E-Pals (all)

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E-Pal number 2009-163
Name: Thomasina
Gender: female
Age: 35
Lives in: USA
Years with: 5+
About Me: Hi! I am mother of two and recently diagnosed with Sjogrens. I enjoy life! My interest are camping, hiking, snow tubing and reading.
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E-Pal number 2009-162
Name: Karen
Gender: female
Age: 52
Lives in: Cyprus
Years with: just referred for tests
About Me: I have been treated for Idiopathic Transverse Myelitis for 5 years, now my Neurologist has referred my for tests for Sjogrens. I have some of the symptoms, dry eyes, mouth, nose, stuffy ear, aching joints, fatigue, memory lapses at times, fatigue and i am really worried about how to cope with this. I have a loving husband and wonderful 16 yr old daughter, but unless you understand this syndrome, its difficult to cope and help. Would love to speak to someone in similar position to myself, or anyone who understands.
We really have to live each day to the fullest and face this head on don't we.
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E-Pal number 2009-161
Name: Robin
Gender: female
Age: 55
Lives in: New Jersey, USA
Years with: years? just diagnosed
About Me: I am newly diagnosed, and just beginning my research. Now all of the pieces of my puzzle are fit together. I would love to talk to someone that is experiencing the same and how do you keep a full time job when you feel so horrible, one minute to the next? Thank You!
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E-Pal number 2009-160
Name: Betsie
Gender: female
Age: 28
Lives in: Massachusetts, USA
Years with: around 2 years
About Me: I'm 28 years old and have been diagnosed with SJS. I hate the fact that I know so little about this condition, and would like very much 4 someone 2 talk with.
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E-Pal number 2009-159
Name: Susan
Gender: female
Age: 44
Lives in: Michigan, USA
Years with: diagnosis this year, but I am sure I have had it longer
About Me: Hi, Looking for someone to talk to that as a lot of pain also. Maybe we can figure out together how to cope with it. I have a good husband of 20 yrs and a 10 yr old boy and 11 yr old girl. I am working part-time and hope to continue.

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E-Pal number 2009-158
Name: Wanda
Gender: female
Age: 26
Lives in: California, USA
Years with: 3 months
About Me: I was recently diagnosed with sjs based on blood tests and severe dry eyes. I go through good days, bad days, and worse days. I get dry eyes (still despite the restasis and ATs) have always had dry cracked lips bouts of joint pain, fatigue, headaches, brain fog and those crazy pins and needles feeling. I want to find someone my own age to talk about this with. I'm only 26 and it's hard feeling so much more tired and older most of the time.
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E-Pal number 2009-157
Name: Cindy
Gender: female
Age: 47
Lives in: Alabama, USA
Years with: 2
About Me: I was diagnosed with SS two years ago. My mother had this disease and I assisted with her care. I was probably more informed than most people when they confirmed I have it. I have the regular dry eyes and mouth, achy muscles and fatigue. I still work full time. I have been married two years. I have two step daughters and 3 grand children. I have two cats Kramer and Newman. Would love to have someone to chat with that understands what I go through everyday.
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E-Pal number 2009-156
Name: Linda
Gender: female
Age: 50
Lives in: England
Years with: ??
About Me: I'm waiting for a diagnosis, hopefully on 3/11/09 hen I get my results, have dry eyes, dry mouth, persistent cough and more recently pain in my neck where my glands are. would like someone to chat with about this condition.
I'm a single female, that works part time with no family members that live close to me, I live with my 2 Siamese cats some of my interests are walking, camping, reading and just being out and about.
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E-Pal number 2009-155
Name: Lucy
Gender: female
Age: 24
Lives in: England
Years with: 0
About Me: Hi just been diagnosed feeling pretty lousy to be honest 2 kids 15 and 12 and a hubby who's in Afghanistan so feeling pretty low at the moment. I work as a support worker and love my job would love to chat to anyone.
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E-Pal number 2009-154
Name: Charlotte
Gender: female
Age: 36
Lives in: England
Years with: 1
About Me: Just diagnosed with primary Sjogrens & the extra bonus of an IGG deficiency which apparently makes me more susceptible to infections. I haven't a clue what this really means for the longer term, and I am trying to adopt a 'wait and see' approach but I admit to feeling a little scared by it all. I have two very small children who take up lots of time and energy! I want to be a fit mum for them and for myself. I would really like to be in touch with people in a similar situation. I just started taking hydroxychloroquine today at a low dose. I could really do without all this! But I guess I have to find a way to make the most of what someone has seen fit to give me... Hope to hear from you...!
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E-Pal number 2009-153
Name: Sam
Gender: female
Age: 28
Lives in: England
Years with: 11
About Me: I love musical theatre and meeting up with friends, I would like to talk to people that have the same condition as me, friends and family are very supportive but sometime they don't understand.
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E-Pal number 2009-152
Name: Sheila
Gender: female
Age: 44
Lives in: Ohio, USA
Years with: ?
About Me: I was just diagnosed this week with Sjogrens. I have been sick for the past 18 months. I kept going from doctor to doctor without getting much help. I decided to travel to the Cleveland Clinic for a diagnosis and treatment. That was the best choice I could have made. I have lots of neuropathy, severe fatigue, muscle and joint pain. I am looking for someone to chat with that I really understands what I am going thru. My family understands a little.
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E-Pal number 2009-151
Name: Shauna
Gender: female
Age: 42
Lives in: BC, Canada
Years with: 0
About Me: Newly DX with SS - positive SS-A/B, RA, thyroglobin etc... liver/spleen enlargement, FM DX, T2 DM... looking to share and learn from someone with same. Married, 3 grown children, cardiology technologist, 2 house critters. Good sense of humour.
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E-Pal number 2009-150 *Special Request*
Name: Beth
Gender: female
Age: 40
Lives in:
Years with: 0
About Me: My boyfriend has Sjogrens. It is really hard on him. I need some answers on where we can turn for help. He cant eat solid foods because of no saliva. I puree the food for him. He is starting to get angry because of this disease. Help me please!
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E-Pal number 2009-149
Name: Nichole
Gender: female
Age: 32
Lives in: Massachusetts, USA
Years with: 10?
About Me: Hi, I was diagnosed with sjs about a year ago after many years of mystery symptoms. I am single, no children. Looking for someone around my age to talk to.
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E-Pal number 2009-148
Name: Margie
Gender: female
Age: 61
Lives in: Pennsylvania, USA
Years with: 8+
About Me: I live in Bensalem, PA with my 4 year old Maltese dog. I was diagnosed with SS and CREST Syndrome in 2004, but I had symptoms for at least 10 years before that. I had seen many doctors and finally I saw a dr. at the SS Center in Philadelphia, PA and he knew what was wrong with me. After testing, he confirmed I had SS and CREST Syndrome. Finally I had a diagnosis and could begin to figure out how to live with this on a daily basis. I would love to have some e-mail pals to share our journey. I enjoy reading and the computer. Thanks!
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E-Pal number 2009-147
Name: Robin
Gender: female
Age: 47
Lives in: Arizona, USA
Years with: not sure
About Me: I am still(6 months later) going through the diagnostic phase. Labs are negative.  Had a lip biopsy and the ENT did not take enough glands so it was inconclusive however suggestive of SS. It was painful and took long to heal so I'd rather not have another one. One rheumatologist says I do not have Sjogrens and another says he believes I do.  Have had dry eyes (better with Restasis) and dry mouth (but sometimes it feels almost normal), fatigue and joint and muscle pain (was severe for a few days now barely there). The fatigue still gets bad. Am very frustrated and just want to know if I have it or not so I can begin to deal with it.  Not knowing is the worst.
I am single, in Az , love to hike, read , have two cats.
Anyway, as most of you know we can feel bad and look normal so it's helpful to connect with those in the same boat.
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E-Pal number 2009-146
Name: JoAnne/Joey
Gender: female
Age: 57
Lives in: New Hampshire, USA
Years with: recently diagnosed
About Me: Hi everyone ! I am happily married - and mother of three grown wonderful sons ! Had modeled most of my life and happily quit that about 7 years ago - am currently working in Marketing/Sales and have been loving it, so happy to have evenings and weekends back in my life :))) Although I was just recently diagnosed with primary Sjogrens, like many of you, I suspect I've had it for many years ( blaming my symptoms over the years on my TMJ ) - I don't have the facial swelling/pain or mouth sores etc but do have achey/stiff muscles and joints, stuffy ears, fatigue, and in just recent years, the dry eyes and mouth, etc.
( although the dry eyes and mouth are not extreme right now )- With only recently getting this diagnosis last week ( and having never heard of it before ) i was panicked, have been reading about it...and have just found this wonderful site ! I'm a very active person and am so hoping I can somehow get a handle on it and do my best to keep life as full as possible ! I'd love to be of support if I can - and get some support as well since this is all so new to me - If anyone is going through these similar symptoms around my age ( or any age :) please email as I'd love to hear from you:) I think most of us want to know that we can grow old with this ...with humor and being positive, lol ;)
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E-Pal number 2009-145
Name: Beth
Gender: female
Age: 50
Lives in: Washington, USA
Years with: ?
About Me: Overwhelmed with complications of Sjorgren's. Liver involvement (Primary Biliary Cirrhosis) neuropathy in both arms, fatigue, aches and pains, bladder infections...a long list of side effects. Would like to connect with someone having similar issues.
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E-Pal number 2009-144
Name: Judy
Gender: female
Age: 55
Lives in: Indiana, USA
Years with: ?
About Me: HI, HOPE YOU ARE DOING GOOD! I DON'T KNOW IF I HAVE THIS OR NOT. I DO HAVE IT IN MY NECK AND WRISTS. INDIANA WEATHER IS STARTING TO GET COLD. I FEEL LIKE MY PAST RHEUMATOLOGIST HAS DEFINITELY BEEN HIDING THINGS FROM ME. HOPE YOU CAN HELP! ALWAYS LOVED DOING THINGS OUTSIDE AND GOING PLACES. TAKE CARE, BYE
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E-Pal number 2009-143
Name: William
Gender: male
Age: 54
Lives in: Arizona, USA
Years with: 4
About Me: I am a guy who developed this weird disease 4 years ago. I have the dry eyes,mouth, and I have this tongue that hurts all the time. I would love someone to talk with who understands this strange illness.
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E-Pal number 2009-142
Name: Teresa
Gender: female
Age: 49
Lives in: Tennessee, USA
Years with: less than 1
About Me: Just been diagnosed--just want someone to share with. Maybe someone that has had it awhile. I still work full time but it is getting really hard--but I don't want to give up either. Just someone to chat with about this. :)
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E-Pal number 2009-141
Name: Michele
Gender: female
Age: 55
Lives in: Australia
Years with: 3
About Me: My symptoms began over 6 months period. First dry eyes then burning tongue and sore throat then sore hands and finger tips then sores tops of feet. I am also very lacking in energy and have muscle and joint pain feel anxious and have a real sick feeling like I am getting the flu often. My symptoms fluctuate in intensity, I have good days and bad. I have an ANA 1:160 but a negative lip biopsy one optometrist thinks I have severe dry eyes another just thinks it is blepharitus. I am so confused. A professor of immunology thinks I have ss and another associate professor does not. Please help me to understand. The worst part is my burning tongue. Does anyone have similar symptoms. Would love to chat. Some days I feel like I don't want to go on other days it improves. I have had to cut down my work to cope.
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E-Pal number 2009-140
Name: Carrie
Gender: female
Age: 46
Lives in: Texas, USA
Years with: less than 1 year from diagnosis
About Me: I am looking for someone to talk with. I have been just diagnosed about a month ago. I just got out of the hospital less than a week ago and am now homebound and cannot do anything. I am trying to learn what is happening to me and see if there is someone else out there with the same.
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E-Pal number 2009-139
Name: Stacy
Gender: female
Age: 46
Lives in: Michigan, USA
Years with: 10
About Me: I would like to correspond with someone who has had SS for a while, and just chat about how I'm feeling and dealing with the disease.
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E-Pal number 2009-138
Name: Julie
Gender: female
Age: 55
Lives in: USA
Years with: unknown
About Me: Looking for folks who have Sjogrens or are coping with it, to trade information, coping techniques, treatments options and support.  I am a mental health therapist, a mother, wife and enthusiastic advocate in mental health, head injuries and chronic pain.  I love the rocky mountains, MUSIC, traveling, good friends and Civil War history.
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E-Pal number 2009-137
Name: Helen
Gender: female
Age: 43
Lives in: Alabama, USA
Years with: 9?
About Me: Diagnosed with Sjs in 2000 and treated for 6 years.  Stopped treatment due to worry about eyes and nothing changing.  I now have further disease involvement and am looking for proof of Sjs not just a guess.  Praying about starting treatment again either way.  FYI:  I have a sacral nerve stimulator due to neurogenic bladder.  Looking for someone locally to bounce ideas off of and talk with.  I like movies, family time and home improvement.
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E-Pal number 2009-136
Name: Debbi
Gender: female
Age: 50
Lives in: Wisconsin, USA
Years with: 3
About Me: I am a recently retired Army Vet who's been trying to work through Sjogren's without affecting my career. Married, no kids unless you count the dog and cats! I am hoping just to find someone to talk to about the frustrations associated with this. I do lampworking as a hobby and enjoy the quiet time where I don't have to talk and can just create.
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E-Pal number 2009-135
Name: Jacki
Gender: female
Age: 37
Lives in: Wisconsin, USA
Years with: 2
About Me: Hi, I am married, no kids except the furry kind. 2 dogs and 2 cats. I enjoy riding my motorcycle, ATV, hiking, outdoors, gardening, scrapbooking and making stepping stones. I worry about how long I will be able to do these hobbies. It started with sore joints in my hands and swelling. I have always had other joint pain (back, knee, ankle etc) but I blamed my weight (which doesn't help) I blamed the dry eyes on the computer and dry mouth due to smoking (which I don't do anymore). Who knew there was more too it? I also suffer from depression and anxiety so I am dealing with a lot of stuff and find it hard to talk about it.

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E-Pal number 2009-134
Name: Katharine
Gender: female
Age: 52
Lives in: Pennsylvania, USA
Years with: 1
About Me: I have been diagnosed with Sjogren's this past year and have liver involvement. I would love to talk to someone who has Auto-Immune Hepatitis or anyone who would like to chat about Sjogren's.
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E-Pal number 2009-133
Name: Deb
Gender: female
Age: 46
Lives in: Ohio, USA
Years with: 2
About Me: I am 46 years old, work full time as a nurse, have 3 daughters all in their 20's, a spouse, 2 precious pooches and it appears that I now have Sjogren's too! Joy, Joy!
still awaiting a definite diagnosis, but 2 of my physicians feel certain this is my diagnosis. I see the rheumatologist for the first time on Wednesday. would love to chat with anyone, especially anyone that may live near me in northeastern Ohio.
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E-Pal number 2009-132
Name: Heather
Gender: female
Age: 25
Lives in: California, USA
Years with: 11
About Me: I was diagnosed 11 years ago with Sjogrens, but had only minimal dryness and joint pain until recently. I have been in a flare-up for about six months with extreme joint pain, swelling of the joints, fatigue, and chronic hives. On top of that about every two weeks it was some type of bacterial infection, or sinus or bladder infection, as well as stomach problems caused by all the meds. I do have support from family and friends but just want to talk to someone who understands. I'm trying to be as positive as I can and am interested in natural remedies. I have been taking fish oil and glucosamine and really notice a difference. I am also trying to gain as much knowledge as I can about this disease. Looking forward to getting to know people on here!!
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E-Pal number 2009-131
Name: Jaya
Gender: female
Age: 32
Lives in: Florida, USA
Years with: 1
About Me: I am mother of 2 boys and engaged to be married. I love gardening and cooking. I was diagnosed with Sjogrens in April but have had it longer than that. Finally put a name with what I was feeling. Just looking for someone to chat with to see if what I am feeling is normal for this disease. I feel very alone with this. Family is sympathetic and tries to understand but it's not the same as speaking with some who knows what I am going through. My life has completely changed from two years ago.
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E-Pal number 2009-130
Name: Kathy
Gender: female
Age: 31
Lives in: Texas, USA
Years with: 5
About Me: I am just looking to share experiences and the difficulties that living with SS can bring.
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E-Pal number 2009-129
Name: Amy
Gender: female
Age: 42
Lives in: Australia
Years with: 10 months
About Me: Hi there, my name is Amy and I have been diagnosed with SS recently. Although I have lived with the soreness and fatigue for the last 10 years and have been to many medical practitioners, none could tell me what was wrong with me. I was even told once that it was in my "head"! I am getting the dry eyes and mouth now, but its the difficulty in swallowing, the slurred speech and brain fog that really get to me. I would like to chat and listen to someone going through the same situation.
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E-Pal number 2009-128
Name: Ellen
Gender: female
Age: 43
Lives in: Florida, USA
Years with: 3
About Me: My autoimmune age of onset was 12, but the SS didn't present until 17; my two oldest daughters have suffered greatly from autoimmune, and I find myself currently fighting for my life from the SS. I am looking for to meet someone else whose SS is progressing towards lymphoma and suffers from chronic lymphadenopathy/parotiditis.
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E-Pal number 2009-127
Name: Kylie
Gender: female
Age: 35
Lives in: Australia
Years with: 3
About Me: I'm 35, a psychologist and live with my defacto partner (no children yet). I'm currently working in private practice which has been my dream since I commenced my university studies 7 years ago. Sadly I have had to reduce to part time hours as a result of constant flare up of symptoms (fatigue, headaches, back & neck pain, brain fog). Ironically I am only just coming to terms with the emotional aspects of this disease. I can now see I was in denial for some time, cycling between pushing and crashing. I'm constantly having time off work even with reduced hours. I worry about the future. My partner and I are in the process of buying our first home together and are trying to fall pregnant. I worry about not being able to contribute financially as time goes on. I worry that I won't be able to have kids. I worry that if I do I will pass this disease on to them. I have the most supportive partner but I worry that as the years go by he will become resentful of me and the impact this disease has on our lives. I am interested in talking to someone around my age and at a similar life stage.
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E-Pal number 2009-126
Name: Melissa
Gender: female
Age: 32
Lives in: California, USA
Years with: 3
About Me: I was diagnosed with Sjogren's three years ago. It gets frustrating having to deal with something that a lot of people haven't heard of. I would like to talk to anyone that is around my age who is dealing with the same thing. I just got married a year ago, and do not have children yet. I am applying to grad school for nursing this year.
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E-Pal number 2009-125
Name: Vickie
Gender: female
Age: 58
Lives in: Ohio
Years with: 2
About Me: I was diagnosed with Sjogren's 2 years ago. I was told my the family doc that I had a connective disease over 20 years ago, one Rheumatoligist diagnosed Lupus. I have the extreme sun sensitivity, rash and confusion after being in the sun even for a short time. But the diagnosis of Sjogren's not Lupus was confirmed only 6 months ago. I recently tested positive for hypothyroidism by my Rheumy and am scheduled to see MD next week for meds. My mother died from non-Hodgkins Lymphoma, my sister has Celiac disease (the gluten allergy). My daughter has Raynaud's. Seems we all have some sort of autoimmune condition. Would like to share my experiences and concerns with someone.
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E-Pal number 2009-124
Name: Wendy
Gender: female
Age: 59
Lives in: NSW, Australia
Years with: 10+
About Me: Although I have just been diagnosed officially I have had Sjogren's for over 10 years and been treated for just about every thing else. I am a retired educator and really enjoy being a grandparent. I am new bridge player who is enjoying the challenge and the new friendships I have found will try to master this amazing game.
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E-Pal number 2009-123
Name: Patti
Gender: female
Age: 50
Lives in: Florida, USA
Years with: Diagnosed 2009
About Me: Kidney stones lead me to Renal Tubular Acidosis which lead me to a Sjogren's diagnosis that explained my extreme fatigue, dry eyes, blurred vision, dental problems, dry mouth, lips, and skin, difficulty swallowing, "brain fog", joint pain, muscle weakness, and light sensitivity. Prior to this insanity, I was very physically active and mentally sharp. My ability to work as an accountant has diminished. Would love to share my concerns and get ideas on how to keep this disease at bay.
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E-Pal number 2009-122
Name: Kathy
Gender: female
Age: 49
Lives in: none entered
Years with: 2
About Me: Have Sjogren's and Non-Hodgkin's lymphoma(pulmonary). looking for e-pal with similar medical conditions.~~~~~
E-Pal number 2009-121
Name: Rhiannon
Gender: female
Age: 23
Lives in: NSW, Australia
Years with: 7
About Me: Hi all,
I'm 23, a law student, and I'd never heard of Sjogrens before I was diagnosed. I also have asthma and allergy problems but the biggest problem I've been facing is the roller-coaster emotions. I'd love to hear from anyone, but especially people close in age to me. A problem shared is a problem halved! Lets share some positive thoughts.
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E-Pal number 2009-120
Name: Jen
Gender: female
Age: 35
Lives in: Indiana, USA
Years with: 7
About Me: I have had Sjogrens syndrome for 7 years and was diagnosed with asthma about a year ago. I recently suffered my 3rd miscarriage and wonder if anyone dealing with this type of loss would like to share their experience.
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E-Pal number 2009-119
Name: Cindy
Gender: female
Age: 55
Lives in: Indiana, USA
Years with: 30
About Me: Married, no children, work full-time in construction. I enjoy reading and anything competitive - like golf (although don't play much), traveling to places where we can drive to, friends, dinner out, and MOVIES! I am still pretty active. Would like to have someone I can talk with frequently and who understands what we are dealing with, just to say hey and how are you feeling, and did you notice this symptom recently, etc. Friends and family don't want to be a part of all that. Thanks!
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E-Pal number 2009-118 *Parent of child with Sjogrens*
Name: Amanda
Gender: female
Age: 39
Lives in: North Carolina, USA
Years with: newly diagnosed
About Me: Actually I do not have Sjogren's Syndrome but my 11 year old son just got diagnosed last week. I am learning it is very uncommon for males and children to be diagnosed with Sjogren's so I would love the support of anyone that can help me, my son and our family on our new Sjogren's Journey. It would be so helpful to talk to someone who can give me feedback on how best to support my son. We had never heard of Sjogren's until last week so any feedback and support would be greatly appreciated. Thank you!
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E-Pal number 2009-117
Name: Sacha
Gender: female
Age: 22
Lives in: California, USA
Years with: 1s
About Me: I have been recently diagnosed with Sjogren's and I'm looking for someone about my age to talk with about this disease. I have lots of questions. I'm looking for advice on how to deal with my symptoms while going to school and working. I'm an Illustration major and I work as a graphic designer. The brain fog and chronic fatigue is really frustrating, but I know ultimately that God's got everything under control. Can't wait to meet you!
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E-Pal number 2009-116
Name: Beverly
Gender: female
Age: 51
Lives in: England
Years with: 8 months
About Me: I began to have awful blood shot sore eyes earlier this year. I went to 3 opticians for help. One suggested contact lenses. My mouth was very dry and my vagina had been dry for about 2 years, which I had put down to menopause. I haven't had a proper cold for years now, but always used to suffer with sinus problems. Recently I realised I can't cry anymore. I begged my GP for blood tests. He noticed my rheumatoid level was up and mentioned Sjogrens. I found the specialist via the internet, plus an ophthalmologist specialist at Moorfields hospital and am awaiting a lip biopsy. The blood tests were not conclusive. I think I am at the preliminary stages and get quite nervous reading what this can lead to. My friend in Seattle has NH Lymphoma and has suggested a very good form of Green Tea Tablets.
I would be very happy to talk to anyone as new to this as me to compare notes.
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E-Pal number 2009-115
Name: Gail
Gender: female
Age: 37
Lives in: Mississippi, USA
Years with: a few months
About Me: I am 37 years old woman, and been suffering from SS symptoms for 4 months now. I am not diagnosed yet. I want to talk to some women with this condition, and maybe they can help me understand what is going on. I am very scared and need a friend to talk about this disease. Maybe some guidance in doctor's choice. I just suddenly stopped producing tears and cannot cry. Is it normal? Please contact me. Gail.
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E-Pal number 2009-114
Name: Laura
Gender: female
Age: 52
Lives in: Texas, USA
Years with: 2+
About Me: I have been quite ill since January 2008, and just now beginning to get my life back. I was sick with what I now believe was a virus (3 months), but between doctors they gave me antibiotics and cortisone (3 rounds antibiotics, 1x cortisone) guessing sinus infections, bacterial infection of some sort. I discovered the Sjogren's connection through my own research, and finally got diagnosed by a rheumatologist. I lost 30 pounds not being able to swallow/eat, had my gall bladder removed (that was a mistake), took acid-reflux meds (also a mistake), had untold gastrointestinal tests taken, allergy tests, etc. I am now on pilocarpine tabs for my dry mouth 4x/day and have plugs inserted in my eyes. I take natural herbs for my kidneys and digestive enzymes to help digest my meals. Still experimenting day by day. Would love someone to share the ups and downs of daily living with and to help each other out with new discoveries that may work. I was writing a novel when I began to get sick, and I really want to get back to that daily!
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E-Pal number 2009-113
Name: Patty
Gender: female
Age: 36
Lives in: Alabama, USA
Years with: 2+
About Me: I've been positively diagnosed with FMS. In the past several years, my rheumatologist states he believes I have Sjogren's. Have had positive labs, dry eyes, dry mouth, difficulty swallowing, nose & mouth ulcers. At this point, I'm having kidney problems and am concerned about involvement there. I would love to have someone to discuss it with.
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E-Pal number 2009-112
Name: Patty
Gender: female
Age: 45
Lives in: Tennessee, USA
Years with: too many
About Me: I was told I had Sjogrens in 2008 after a positive test for SSB. I did not believe it, as I felt I had lupus, and had been told I had rheumatoid arthritis 3 years earlier. As my symptoms changed, I tested positive again last month for ANA and SSB. I have terribly dry eyes but not really a dry mouth. I had a photosensitive rash when Spring came. That's why I was retested. I would like someone to talk to about this. I feel very alone.
I hope you will consider me. Thanks.
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E-Pal number 2009-111
Name: Martha
Gender: female
Age: 51
Lives in: Texas, USA
Years with: 4 mos.
About Me: In Feb '09 mouth started burning really bad. April landed in hosp with distal paralysis from kidneys dumping my potassium. Roller coaster since then, high blood pressure, thyroid, Reynaud's, pain in feet and finger tips, no reflexes. Now back to walking dog 45 mins. daily and going full speed. Don't know how I can go from flat on my back to fine again although it took 3 months to get strength back. Lip biopsy negative, blood test negative but dr. says, with dry eyes (lids that stick to eye if crying), burning mouth and tongue, and high ANA, he's sure it's Sjogrens. My husband and sisters, kids, just want there super person back again. Understanding disappeared in 3 weeks. Anyone Tests Negative but really has it??
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E-Pal number 2009-110
Name: Nur
Gender: female
Age: 25
Lives in: Virginia, USA
Years with: newly diagnosed
About Me: Hi, I hope you all are doing well. I am newly diagnosed with Sjogren's Syndrome and in the process of learning about it. I would like to meet other ladies around my age or older to share thoughts and experiences with and hopefully learn more about this connective tissue disorder. I am a nurse, married, and have a 9 month old baby girl. Thank you.
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E-Pal number 2009-109
Name: Francesca
Gender: female
Age: 24
Lives in: Pennsylvania, USA
Years with: 2
About Me: I have been possibly living with Sjogren's for a little longer than two years, but the CNS symptoms didn't show until last summer, and they've been stuck with me ever since. As I mentioned, I'm 24, and no one in my immediate or my extended family has anything like this, so it's hard for them to relate to me. My friends are the same way, but they can be supportive.
In regards to my interests, I love anything to do with music. I am a classically trained singer/musician. I also love the outdoors, reading, knitting, baking, astronomy, gardening, painting, dancing, and anything else that can make me smile!
Overall, I would like to talk to someone closer to my age because I would like to know how this affects his or her life, and how they're coping with it at such a young age.

~~~~~
E-Pal number 2009-108
Name: Audra
Gender: female
Age: 34
Lives in: Pennsylvania, USA
Years with: 10
About Me: I believe I have had the symptoms of Sjogren's for 10 years, but I didn't know what it was until last week. The doctor said it is Sjogren's based on the antibodies and symptoms. I would like to talk to someone who has similar symptoms to me. My symptoms are picky eyes, achy legs, extreme fatigue in the afternoon/evening hours, and frequent headaches. I also notice that I can't drink any kind of alcoholic beverages or I get an instant headache. This really puzzles me because I never got this when I was younger. I am taking medicine hoping it will work but who knows.

~~~~~
E-Pal number 2009-107
Name: Karen
Gender: female
Age: 65
Lives in: North Carolina, USA
Years with: ?? 10 or more
About Me: I guess I would like to share feelings and ideas about living with Sjogren's. Sometimes I feel very alone. I collect Sasha dolls, love to read mysteries, am a retired nurse.
~~~~~
E-Pal number 2009-106
Name: Vivian
Gender: female
Age: 71
Lives in: Georgia, USA
Years with: 6 months
About Me: I live in a small town in Georgia and married to a wonderful man. No one in our small community that I know has ever heard of Sjogren's Syndrome and sometime I feel so alone with having no one to discuss the myriad of symptoms and feelings of being alone in a world of people who are not hurting or tired. Would love to have an e-mail partner who shares these feelings to be a partner with. I would love more information from anyone willing to share with me. I look forward to hearing from a fellow Sjogren's sufferer. Vivian
~~~~~
E-Pal number 2009-105
Name: Kathy
Gender: female
Age: 60
Lives in: New Jersey, USA
Years with: 3
About Me: I haven't been dx'd yet but have had symptoms for the last 3yrs. Dry eye has been confirmed but I can't seem to find an Oral surgeon qualified enough to help me, nor get an appt while I'm having the problems. It's extremely frustrating. I find reading, knitting & quilting small projects comforting and relaxing. Is there an EPal that would share how they were dx'd or how to find doctors knowledgeable about this disease (NJ).
~~~~~
E-Pal number 2009-104
Name: Eva
Gender: female
Age: 53
Lives in: Washington, USA
Years with: few months
About Me: I'm a single 53 yr old, who has had SS symptoms for a few years now, but just this March, it was made possitive. I'm haven a hard time dealing with the dry mouth and eyes. Tried everything.! The headaches and being tired all the time are almost more then I can stand. Still working but less and less as time goes by. I some days feel so alone. My husband passed away many years ago. I truly need someone to talk with about all thats goin on.
~~~~~
E-Pal number 2009-103
Name: Stasia
Gender: female
Age: 43
Lives in: Poland
Years with: 14
About Me: Diagnosed a year ago, but have had symptoms much longer. I take Plaquenil, but not noticing any improvement so far. I have dry eyes, gritty eyelids, burning sensation, joint and muscle pain, fatigue and memory losses. I work in a printing company, unfortunately spending much time in front of a computer screen. To improve my memory I attend adult school on weekends, however it is difficult when my eyes get easily tired from reading. In my free time I like hiking mountains, cycling and sightseeing. I love visiting caves, there is plenty of moisture there :-) I would like to make new friends to help each other and share experiences in fighting SS.
~~~~~
E-Pal number 2009-102
Name: Lorraine
Gender: female
Age: 50
Lives in: Toronto, Canada
Years with: not diagnosed yet
About Me: I was and still am very optimistic, I have had major dryness in my eyes and redness for over a year and a half.  Went to a ophthalmologist about 14 months ago and he gave me an antibiotic and said he was not going to do any testing unless I had $200.00 to do them. Hence they were never done. When I turned 50 I went back to my family doctor and he did a physical and at that time my eyes were not so bad until just recently,  when it is now at the point where I have one eye opened and one eye shut. I where sunglasses all the time even at night when I drive not good.  I do have Arthritis throughout my whole body and a very dry mouth as well.  I was and still am the type of person where when something hurt to just get up and keep going. Well what a mistake that was to my health without even realizing it.  I just took an advil and then got on with what I was doing.  It patched up the pain for the time until the next bought started, does this sound familiar to anyone.  I had always tried to be aware of my body/health I just don't know how all of a sudden this crept up to me.  My family doctor when he saw me last week was quiet concerned because he thought I had a disease called Iritis, and wanted to get me to an ophthalmologist or an optometrist as soon as possible.  I then thought how am I going to do this because I had no money.  Well somehow I thought my eyes were more important than money at this point and I took the money, all that I had and ran to the optometrist.  When I got there the Doc was amazing and extremely quick with all the testing that he had to do.  He told me it was not Iritis but to take the meds and come back in one week.  Well yesterday I went twice to see him and he had a strong hunch that Sjogrens is what He strongly feels that I have.  I went to work with at least some sort of hint of what it might be. He also is making a appointment with an extremely good ophthalmologist to see. At the end of it all in that one week the Doc did not charge me for a thing after all the testing he did not even a dime.  He was just amazing and now from what I have read there is still some testing that I have to go through but why could the very first ophthalmologist not know or even have some sort of clue as to what was going on over a year and a half ago, instead of it progressing to the point of I thought I was going almost blind.  There are many mornings that I wake up and can't see out of my eyes for sometimes about an hour or so, then eventually my right eye opens then my left one most of the time does not.  I have seen a neurologist too who just basically brushed me off because sometimes I fell that because your a woman they think it is all in your head, well when all the testing is done and this comes back positive I will be going back to see these two doctors and giving them a huge piece of my mind.
~~~~~
E-Pal number 2009-101
Name: Caroline
Gender: female
Age: 29
Lives in: Georgia, USA
Years with: 6 months
About Me: My autoimmune journey began when I was 6 with JRA and continued with me dx with multiple sclerosis in 07, followed by SS in 09. My MS is (mostly) behaving. The SS is fierce tho! Married almost 5 yrs and in spite of the medical drama, hoping to have kids someday soon. My eyes are the worst. having corneas involved after only 6 mo. Nuts. love to exchange ideas on symptom management and the fears over being an autoimmune mom! Thanks.
~~~~~
E-Pal number 2009-100
Name: James
Gender: male
Age: 20
Lives in: Texas, USA
Years with: 1 year
About Me: Howdy everyone, my name is James and I was diagnosed with Sjogren's back in 2007. Ironically, I'm an immunology researcher, so if you have questions about Sjogren's or any other autoimmune disease, I can answer them. I've never met any females around my age with Sjogren's, so I guess that's who I'd like to meet.
~~~~~
E-Pal number 2009-099
Name: Wendy
Gender: female
Age: 32
Lives in: Texas, USA
Years with: 15
About Me: Hello, I was recently diagnosed with Sjogren's. After many years of chronic sinus and ear infection and countless other symptoms I finally got a flare which made my hands and feet tingle and at times numb. It took 4 months of kicking and screaming to get 2 neurologist to keep looking. A positive ANA test lead me to a Rheumatologist who found ss-a and ss-b. I have 2 beautiful boys and just want to talk to someone who understands me.
~~~~~
E-Pal number 2009-098
Name: Laney
Gender: female
Age: 36
Lives in: 
Years with: just diagnosed
About Me: Hi, My name is Laney. I was just diagnosed with Sjogren's after some weird years of strange symptoms. My doctors keep telling me I am a "mystery". Not what I want to hear. I am 36 with 3 beautiful boys. I would love to have another child but now I don't know if it is possible. I am scared of what the future might bring but trying to remain positive since I have no symptoms right now. Would love to chat with someone to make it easier to get through. I am definitely a positive, laid back kind of person.
~~~~~
E-Pal number 2009-097
Name: Kristi
Gender: female
Age: 35
Lives in: New Jersey, USA
Years with: just diagnosed
About Me: Hi all. I am 35, and pregnant with my first child. I was just diagnosed with SS today. I have had symptoms though from age 14. No one knew what I had. I am still going though testing to find out if it is primary or secondary. I am looking for someone who can enlighten me, commiserate, and joke with. Humor helps healing.
~~~~~
E-Pal number 2009-096 Updated!
Name: Melanie
Gender: female
Age: 45
Lives in: Pennsylvania, USA
Years with: 1
About Me: Hi, Maybe, maybe not, "very hard dx to make" I have had allot of medical problems, ever since my hyster, when I was 38.
I started with severe face pain that became unbearable, went to see a neurologist who ran numerous tests on me.
It came back with Sjogrens "B" and not positive for Sjogrens "A". I went to see a rheumy, he is very confused I have numerous symptoms, and they have never seen Sjogrens B without A. My ANA titre is also positive. I am on Amitryptiline, to take care of my neural affects, but still have not had a positive dx. My fatigue was unbearable and I had a tough time dealing with a possible diagnosis. The last words from the rheumy was "live your life" I have decided to exercise everyday and not let this get me down. Anyone with similar problems?
~~~~~
E-Pal number 2009-095
Name: Karen
Gender: female
Age: 67
Lives in: Iowa, USA
Years with: dx 1995
About Me: I'd really love to E-Pal with someone about my age and/or in or near Iowa. I'm also dx with Rheumatoid, Mixed Connective Tissue, IBD, vasculitis, pleurisy, poly neuropathy and paresthesia, and on and on...all companions of SjS. I dearly love to garden (now limited) Master Gardener, paint, make cards, crochet, quilt, and enjoy my little dog and all outdoors. I have 3 children, 3 stepchildren, 3 grandchildren. I retired (on disability), have great doctors, but still get frustrated with physician lack of knowledge. I believe I had SjS since about 29 and was diagnosed by my eye-doc who thought I had MS at first. He placed tear duct plugs that really help the dry eyes. I try to keep up with some sort of social life, but fatigue sometimes dictates otherwise. An E-pal would be a great door to the outside world. I have a sunny attitude and am a "grandma who likes to hug" according to my grandkids.
 ~~~~~
E-Pal number 2009-094
Name: Ann
Gender: female
Age: 38
Lives in: California, USA
Years with: 9 years
About Me: Let’s share gripesgrumbles n goodstuff! Dxd 2 yrs – have tried dozens of meds n specialists. Have beau of 9 yrs & 3 fur kids, many single pals! Enjoy films: vintage, animated, comedy, foreign, PBS, NPR, books, tea, walks, nature, retro, meditation, higher power, positive thinking. Crafts TBA: photos, film, paint, finger knitting – to learn: sewing machine, beading. Have some pain: Peripheral Neuropathy, sciatica, joints, insomnia, dryness. Lost with SSI, SSDI, Medi-caid, Medi-care, Medi-cal. Cheers!
~~~~~
E-Pal number 2009-093
Name: Chris
Gender: male
Age: 46
Lives in: Texas, USA
Years with: 7 years
About Me: I am an active mid age man with two wonderful kids and a caring wife.
I love sports and international affairs. I looking for shared experience and e-pals are dealing with the dry mouth.
~~~~~
E-Pal number 2009-092
Name: Marie
Gender: female
Age: 78
Lives in: Pennsylvania USA
Years with: 6 years
About Me: I was shocked to see how many young people are affected with this disease. I only found one ad from a person my age. I was dx in 2003, mainly complaining of severe dry mouth and eyes. It has progressed to joint and muscle pain, vasculitis, and at times, extreme fatigue. I can sleep for hours, at night or during the day. Would like to compare life style and symptoms with someone close in age.
~~~~~
E-Pal number 2009-091
Name: Valerie
Gender: female
Age: 35
Lives in: New Jersey, USA
Years with: 1 year
About Me: I am a 35 year old mother of 2 girls.. I am finding that this whole autoimmune nightmare is like putting a big puzzle together.. I just want to know what to expect.. I am very scared of the unknown? The only symptoms I have now are dry eyes and joint pains in my hands & feet.. I am currently just taking advil for the pain. I feel very alone My family is not supportive at all.. They think I look great so there is nothing wrong with me. Need advice??
Thanks, Val
~~~~~
E-Pal number 2009-090
Name: Amy
Gender: female
Age: 32
Lives in: Texas, USA
Years with: 7 years
About Me: I have secondary ss. Not sure what my primary is, although when initially diagnosed, dr said I had several of the characteristics of lupus and that he didn't want to quite dx me with that at such a young age. I suffer with dry eyes and arthritis. I have a 19 month daughter and struggle frequently with the joint pain and fatigue.
~~~~~
E-Pal number 2009-088
Name: Kerri
Gender: female
Age: 36
Lives in: California, USA
Years with: 7 years
About Me: I was recently diagnosed with SS after 2 years of chronic pericarditis, dry eyes, and dry lips. I have been getting drier as time has passed. I am lucky to have a supportive husband, but I don't know anyone with Sjogrens or any other autoimmune disease. I enjoy hiking and camping, but lately I have been struggling with bouts of fatigue. I would like someone to talk with about the various symptoms of Sjogrens.
~~~~~
E-Pal number 2009-086
Name: Jayme
Gender: female
Age: 35
Lives in: PA, USA
Years with: 1 year
About Me: I have been diagnosed with Sjogren's among other things. I am a mom who has recently received disability benefits and I feel totally alone with this illness. I don't think anyone quite understands what I have been going through for the past 4 years. I would love someone to talk to when there is no one else that understands.
~~~~~
E-Pal number 2009-085
Name: Rita
Gender: female
Age: 52
Lives in: New York, USA
Years with: 1 year
About Me: Hello, I have newly been diagnosed with Sjogren's Syndrome. I am a Speech-Language Pathologist and the only contact I have had with this condition is a patient I have had that was in the late stages of the disease. She had a lot of problems with swallowing. This scared me a little when I found out that I had the same disorder.I would like to connect with people who also have this and may want to talk abnout it.
~~~~~

E-Pal number 2009-084
Name: Karyn
Gender: female
Age: 56
Lives in:  Pennsylvania, USA
Years with: recently diagnosed
About Me: I just found out last week that I have SS. I never heard of it before. I've had the dry eyes and the eye doctor had me using the drops for about 5 years now. A family doctor ran the big blood tests for all things and the SS came up then. I'm reading all I can about it now. Besides the dry eyes, okay I have the achy joints (brushing it off on getting older) a cough (dry house?) but nothing else. Now I'm wondering how to keep it all from progressing? I watch my diet and drink a lot of water anyway so I'm told that's good. And other tips would be so greatly appreciated at this point. Thanks!!
~~~~~
E-Pal number 2009-083
Name: Annette
Gender: female
Age: 55
Lives in: Kentucky, USA
Years with: recently diagnosed
About Me: Am newly diagnosed with Sjogren's and Fibromyalgia. Also have to deal with 24 year history of RSD (I have chronic nerve pain). I am a medically retired RN with experience in critical care and infection control. I enjoy folk art painting (not that I'm very good!), yard sales, antique-ing, and spending time with family, especially grandsons ages 7&8. Of necessity, live quiet lifestyle.
~~~~~
E-Pal number 2009-082
Name: Pat
Gender: female
Age: 65
Lives in:  MO, USA
Years with: 45 years
About Me: I like to read and have two cats that rule the house. I love all kinds of music. Love flowers. Love water color paintings. Wish I could exercise more.ss flares cause me to miss a lot but I try to stay positive I have a good sense of humor.
~~~~~
E-Pal number 2009-081
Name:  Jill
Gender: female
Age: 38
Lives in: Indiana, USA
Years with: recently diagnosed
About Me: I was diagnosed with a debilitating stroke in June 2004. I have recovered to about 95% but the evidence of stroke in my brain was not there. After years of pain and discomfort, I finally found a neurologist who did some tests. I am now working with several doctors. Because of my age MS has been brought up since 04. Now, I learn that it is Sjogren's. I do not have the dryness yet but the pain in the joints and jaw are definitely there. I am looking for someone to begin my journey with me, who I can be here for and can talk to. I am a single mom and really need someone adult to share with. I am a great listener and would love to know that I am not alone in this.

~~~~~

E-Pal number 2009-080
Special Request
Name: Jonnell (for my daughter Jenna)
Gender: female
Age: 4 years old
Lives in:  New Jersey, USA
Years with: 1 year
About Me: My Name is Jonnell. I am a parent of a 4 year old little girl with Sjogren's named Jenna. I am looking for parents with a child with sjs or a autoimmune disease. It is very hard to find information about children and this disease. I have 3 children daughter 16 son 14 and Jenna. My fiancé Rick is a wonderful supportive man who has helped me reach out to talk to others about this disease. I enjoy helping other people, my children and learning all I can to help Jenna deal with her illness
~~~~~

E-Pal number 2009-079
Name: Dee
Gender: female
Age: 54
Lives in:  Texas, USA
Years with: 1 year
About Me: I have been DX with Primary Sjogren's, Lupus, Fibromyalgia. It has been a year since I was first DX. I suffer with joint, muscle pain, numbing, tingling, GERD, scarring of lungs, liver and now stomach also extreme fatigue. I have multiple doctors, each taking care of different systems. I have not gotten any better in a year in spite of all the medications. I became unable to work this year and was approved for SSDI in 2 months. I have learned a lot about this disease this year and would be willing to e-pal with anyone who would like to. I have gone through many emotions since I learned of this DX, but now I am better emotionally and want to help others with this disease.
~~~~~
E-Pal number 2009-078
Name: Monica
Gender: female
Age: 43
Lives in:  Hawaii, USA
Years with: 5 years
About Me: Aloha,
I am Monica from The Big Island of Hawaii. I have had SS for 5 years now. I am looking for a sincere, outgoing, caring, genuine friend. Must be a good listener. Someone we can support one another through bad times and good times. Share our joys, fears and tears. Count on one another no matter what. Looking VERY forward to finding such a person to share my life's struggles with.
Sincerely, Monica

~~~~~

E-Pal number 2009-076
Name: Vicki
Gender: female
Age: 54
Lives in: GA, USA
Years with: 9 years
About Me: Diagnosed but with no ANA stuff on it in my blood work in 2007 - - but it explains a lot of things going on back to before 2000 (years of IBS- now manageable with diet, merciless chronic pain in cervical lumbar and sometimes thoracic spine, premature facial skin aging, acute hypothyroidism, post menopausal hormone deficits, fibromyalgia, insomnia for one reason or another since early 2000s...).
I 'manage' life with a daily toolkit involving hard learned lessons in nutrition and food sensitivities, HRT, acute awareness of internal and external stress triggers (stress is lethal), weekly acupuncture, modified regular 'doable' exercise, meds, and focusing on remaining joys in my life. I was laid off work last Fall when my health problems had caused me to be only able to work 4 hrs a day. I am fighting for disability insurance and living day to day. Atlanta has a wonderful monthly SS support group which has been an invaluable educational tool...SS patients know far more than most rheumatologists and other specialists about SS and coping with it. I still deal daily with neck back and upper limb pain, fatigue and worsening dry eye and light sensitivity. My hard work has provided me a great med team with rheumatologist, ophthalmologist, holistic specialist, endocrinologist, therapist, dentist (it seems to take a village...it's a full time job dealing with auto immune body). Look forward to meeting others who know what life is life like this...it hurts, is exhausting and lonely. Maybe good company will lighten the load. :)

~~~~~

E-Pal number 2009-075
Name: Lisa
Gender: female
Age: 47
Lives in: South Dakota, USA
Years with: Recently Diagnosed
About Me: I was just recently diagnosed with SS. Still trying to understand everything. I am scared with the future will bring. I have joint and muscle pain. My eyes and mouth aren't effected yet. I have been married thirty years, have two grown sons and a new beautiful baby granddaughter. I'm looking for someone to talk to, maybe in South Dakota, but not necessary. Just so we don't feel so alone in this.

~~~~~

E-Pal number 2009-074
Name: Nathan
Gender: male
Age: 23
Lives in: Arizona, USA
Years with: 1 1/2 years
About Me: I'm a younger guy who's interested in networking with others around the same age. I am a bit of a nerd, and enjoy reading about immunology, rheumatology and microbiology.
I am still studying at college to become a Medical Lab Tech.
Hobbies I enjoy talking about include gaming, anime, movies, the active life (as much as I have, ha!).
~~~~~

E-Pal number 2009-073
Name: Shirley
Gender: female
Age: 51
Lives in: Ohio, USA
Years with: many
About Me: I was diagnosed about age 25 with hasimoto thyroiditis and Sjogren's. Ten years ago I was diagnosed with celiac, rheumatoid arthritis and fibromyalgia. After severe muscle weakness, fatigue, breathing and swallowing difficulties hit me in April of 2009, I was also diagnosed with mixed connective tissue disease and polymyositis. I have pretty much lived in denial most of my life but I can no longer do that. I would like to hear from anyone that would like to correspond with me and offer some positive support. I am married 32 yrs, have two adult children and two precious grandbabies. I love to quilt and paint when I have the strength and energy. Hope to hear from any and all soon.
~~~~~

E-Pal number 2009-072
Name: Tamie
Gender: female
Age: 50
Lives in: NC, USA
Years with: 5 Months
About Me: Recently diagnosed, Interest are our 4 grandkids, Sammy our dog, reading. I work in the school system as a Speech Language Pathology Assistant. would love to e-mail someone about this baffling illness.
~~~~~
E-Pal number 2009-071
Name: Amanda
Gender: female
Age: 33
Lives in: Maryland, USA
Years with: 2 Months
About Me: I was recently diagnosed with Sjogren's Syndrome. I am looking for someone that I can communicate with and work through this disease with. I enjoy reading and spending time with my 4 year old daughter.
~~~~~
E-Pal number 2009-070
Name: Dennis
Gender: male
Age: 40
Lives in: Idaho, USA
Years with:
About Me: One of the few guys here, looks like. I have not been diagnosed with this condition (have a doctor appointment soon), but I am showing the signs; crazy dryness in mouth and eyes, fatigue, constantly feeling like I am coming down with the flu, etc... These specific symptoms have just hit me like a truck in the last week or two. Very worried about how this will affect my life (raising two young boys, working, outdoor activities like whitewater rafting, etc...).
~~~~~
E-Pal number 2009-069
Name: Marie
Gender: female
Age: 63
Lives in: New Jersey, USA
Years with: 13 years
About Me: Grandmother of 3 beautiful grandchildren. Love outdoors, gardening, walking. Anyone have sweet tooth as I, believing it comes from Sjogrens. Can't eat spicy - burns tongue & mouth. Sweets taste better / no burn. Eyes scale of 1-10 measured the worst per test Dr. did when 1st diagnosed, bad, but can be remedied with eye drops. My mouth bothers me more than my eyes. Any advice?
~~~~~
E-Pal number 2009-068
Name: Rachel
Gender: female
Age: 26
Lives in: Florida, USA
Years with: 1 year
About Me: I have just been officially diagnosed with SS and I am looking for all the help, support and information I can get. My older sister has lupus and doctors thought maybe that was what I had. Having a sister with an auto immune disease is helpful and she has been my saving grace. Although this is a scary time for me, I know that God is in control and I have nothing to fear.
~~~~~
E-Pal number 2009-067
Name: Gloria
Gender: female
Age: 48
Lives in: Texas, USA
Years with: 3 years
About Me: In 06 shortly after moving to Texas I was diagnosed with Sjogren's but did not experience problems, so I thought. But seemingly the problems that sent me to the Rheumatologist were some of the symptoms, joint pain and now dry eyes and dry mouth. I know God is a healer and I will seek this daily. I want to be of help to someone else who understands what I am going through.
~~~~~

E-Pal number 2009-066
Name: Mary
Gender: female
Age: 33
Lives in: Pennsylvania, USA
Years with: 2 years
About Me: Had some form of arthritis since teen years, now diagnosed with sjogrens and also "light" form of fibramyalgia. Rheumatologist was no help-said that I am too young to need medication. Not very active right now...Would like to talk to someone my age who has it, or someone who knows about pregnancy and sjogrens. Also, what can I do to cope with pain that is inexpensive? Have no insurance and getting worse every day. Have extreme fatigue, joint pain, and just plain would like to talk to someone!
~~~~~
E-Pal number 2009-065
Name: Nikole
Gender: female
Age: 23
Lives in: Pennsylvania, USA
Years with: 1 1/2 years
About Me: Am I the youngest person on this site w/ ss? My grandmother was diagnosed a few years ago. And she noticed that symptoms I was experiencing was eerily similar to her. My mother does not have it. so maybe it skips generations. I guess the worst part being diagnosed I was a month pregnant with my first child. What really scares me is my memory loss is so bad that parts of my child's first yr. is missing. they found white spots on my MRI brain scan. Now their worried if ss is affecting my spinal chord or CNS. anybody having these type of problems?

~~~~~
E-Pal number 2009-064
Name: Lauren
Gender: female
Age: 40
Lives in: Illinois, USA
Years with: 2 months
About Me: I was recently diagnosed and am thinking about what lies ahead in my future. I'm incredibly active and I LOVE to exercise--biking, golfing, weight training, cardio. I have 4 dogs and love life. This diagnosis has been a blow to me. I don't have bad dryness yet, but my joints were what sent me to the doctor initially. With my "very positive" SS-A result, I know tests and changes are coming my way. Each day is a new set of symptoms. Tomorrow is the first rheumatologist appointment. Looking to talk with experienced people who have been through what I am going through.
~~~~~
E-Pal number 2009-063
Name: Chris
Gender: male
Age: 42
Lives in: PA., USA
Years with: 1 year
About Me: It looks like I am the only Male on this Website? :) I got a diagnosis about 1 year ago. I went to the Mayo Clinc and they said that I do not have Sjogrens. However, everything I read about symptoms it sure seems like I do. I am not sure. Looking for friends to comunicate with and disguss how they live with it, the drugs they take etc. I was once on an olympic team and over night I am living a nightmare.
~~~~~
E-Pal number 2009-062
Name: Heather
Gender: female
Age: 36
Lives in: Texas, USA
Years with: 4 months
About Me: The SS diagnosis came as a surprise, although it explains symptoms I've had for a long time - dry eyes & more recently dry mouth. I am SSA +. I'd like a positive pal who is interested in natural therapies and maybe has something in common with me. I don't take any meds yet and I'm not sure if I want to start just yet. I love photography, hiking, music, and reading (Lois Lowry, J.K. Rowling, Jeanne Duprau). I have a supportive husband and the greatest 2-yr-old little boy.
~~~~~
E-Pal number 2009-061
Name: Amy
Gender: female
Age: 35
Lives in: Pennsylvania, USA
Years with: 2 months
About Me: I am a 35 year old single female that was just diagnosed with Sjogrens this past February. I had been feeling the symptoms for about 3 years but had not gone to the doctor until September to start testing. I am basically looking for someone of any age that is going through the same things that I am. Family and friends try to help but don't really understand how I feel. I'm just looking for someone who can say..."I know how you feel" so that I know I'm not going crazy. :)
~~~~~
E-Pal number 2009-060
Name: Debbie
Gender: female
Age: 52
Lives in: California, USA
Years with: 4 years
About Me: I was diagnosed with Lupus in 2005, and along with that came the Sjogren's. It has gotten worse over the years. My eyes are always red and burning, my teeth are rotting, I can't swallow and I'm losing my voice!!!
~~~~~

E-Pal number 2009-059
Name: Betty
Gender: female
Age: 52
Lives in: Iowa, USA
Years with: Diagnosed 4/2009
About Me: Long time to get SJS diagnosis and have both types A&B. So far only minor symptoms. I also have an underactive thyroid and Reynards in 2 fingers. I was the caretaker to my elderly parents for many years who have since passed.
Personality: Midwest friendly & generally an upbeat person. I use a lot of "old phrases" that get a chuckle. Volunteer for a group that helps the elderly keep their companion pet. I have cats of my own - 2 are rescues. Am 5ft-110lbs.
Interests: Ancient history, genealogy, auctions and reading.
For an E-Pal: Everyone is unique and interesting. I'd like to learn more about SJS and swap stories with others of life's funnies. Easier to get through things with a smile on your face - if anything folks will wonder what you are up to.
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E-Pal number 2009-058
Name: Shonda
Gender: female
Age: 41
Lives in: Florida, USA
Years with: 2 days
About Me: I am a native Floridian. I have been sick for 2 years with newly acquired allergies and constant sinus infections. I was worn out, missing days at work, on antibiotics continuously, memory fog is getting worse, and just trying to get someone to listen to me. I thought I was crazy. Finally, went to a RA doctor. She sent me to ENT for lip biopsy...it came back positive for SS. Now I know why I have dry mouth, nose, skin, and other areas. What can I expect in the future?
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E-Pal number 2009-057
Name: Chiara
Gender: female
Age: 27
Lives in: USA
Years with: possible diagnosis
About Me: I am awaiting extensive testing w/ rheumatology clinic to finally find out what has been going on w/ me for the last few months.
I have experienced fatigue, bladder pain, burning, urgency, heart palpitations and trouble breathing at times.
I have had asthma for years, but that was my only medical problem that was long-lasting.
I was married in January of this year and had plans to start a family this fall after hubby and I got some things situated on the homefront and at the workplace.
I just received a blood test result of positive ssb antibodies, indicative to my doctor that I have been suffering from Sjogren's.
I am absolutely devastated at the fact that I may now consider not having children literally two months after my wedding.
I am having a hard time finding what the actual risks are to an unborn child and if this is something I should even still be considering.
I think my new husband is growing tired of always hearing about doctors appointments and medical problems.
I am looking for someone to give me insight who is perhaps my age and maybe thinking about attempting to have children w/ this disease or who has been pregnant now.

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E-Pal number 2009-056
Name: Monica
Gender: female
Age: 44
Lives in: Iowa, United States
Years with: recently diagnosed
About Me: I was recently diagnosed with SS. I have had symptoms for years but felt like a hypochondriac. Now, at least, I feel peace with the diagnosis and happy to know I am not crazy! I am still waiting on other test results.
I have 5 sons and one daughter-in-law. I've been married for 23 years and have a very supportive husband who is full-time military. I love being active and have biked for years but am finding the fatigue tends to steal my active time now. I love my Bichon Frise dogs and I am an artist in various mediums. I have taught nutrition for the past few years and am very interested in health and diet to help treat this disease.
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E-Pal number 2009-055
Name: Ana
Gender: female
Age: 38
Lives in: Arizona, USA
Years with: 1 year
About Me: Hello Fellow Sjogren's Sufferers. I am a recently diagnosed 38 year-old mother of a beautiful 3 year old daughter. I work part time as a Speech Pathologist and a Ph.D. student. I am unfortunately in the middle of a nasty divorce and custody battle. I got the diagnosis the same week that I left my husband. He wasn't very sympathetic to my symptoms and frequently chastised me for being so exhausted so hurray for those of you with supportive spouses/significant others. I suffer from eye dryness, muscle weakness, body aches, serious fatigue, etc. I got a clue that something was really not right when my eyelid stuck to my eyeball and ripped off some epithelial cells causing a corneal abrasion - OUCH! I take planquenil and other supplements such as fish oil. Am trying to go organic but what a grind. Would like to be in touch with others who understand what it's like!!
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E-Pal number 2009-054
Name: Jessica
Gender: female
Age: 64
Lives in: USA
Years with: 2 years
About Me: Hi Everyone! I am so glad to have found this site! With each operation and new diagnosis, I have tried to be completely optimistic and want to gain some control over all of this. I have been researching nutrition, joined the wellness center, using the heated pool for exercises, and read uplifting books. It would be really nice to communicate with someone that knows all about this and share what works and doesn't work. I am really starting to feel that unless you have these things going on in your life, you truly don't understand. I have been diagnosed with Sjogren's for two years now, however; I believe I have had it since my twenties. In 1998, I started having severe pain in my back which turned out to be different types of arthritis and finally had a fusion in my lumbar spine (L-3/4 to S-1) and in cervical (C-2 to T-1) both with instrumentation.. nuts & bolts). I have since been diagnosed with RA and Lupus. Each month (or day) it seemed like a new pain, symptom or weakness. I did not want to sound like I was a hypochondriac so I didn't mention all the symptoms I was having relating to Sjogren's to my doctors. I now have a positive test for it as well.

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E-Pal number 2009-053
Name: Teresa
Gender: female
Age: 42
Lives in: Ireland
Years with: 3 years
About Me: I live with my boyfriend of 6 years. have two teenage step daughters who live with their mom in England. have no more contact with their dad who i was married to, have pain behind my eye which is sensitive to light so i wear glasses winter and summer i have to wear peak hats. i have found that soaking my feet in mustard powder (one spoon in hot water) helps with my sinus problem.
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E-Pal number 2009-052
Name: Susan
Gender: female
Age: 49
Lives in: Florida, USA
Years with: just diagnosed
About Me: I just was diagnosed with Sjogren's syndrome last week. I am looking for someone to chat with that can tell me what I can expect with this disease. I have done extensive work with the Arthritis Foundation in the Chicago, IL area leading Fibromyalgia support groups. I enjoy cooking and baking, and love kids and dogs. I have 2 grown sons and I am divorced. I do counseling with adolescents in substance abuse treatment for my primary job. I look forward to chatting with anyone

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E-Pal number 2009-051
Name: Angie
Gender: female
Age: 48
Lives in: Texas, USA
Years with: 1 year
About Me: I have been married almost 21 yrs and my children all grown up and married themselves, I have been sick my entire childhood, I was diagnosed with Sjogren's with rheumatoid factor since 2008, but I'm sure I've had it for quiet some time, due to everything going on in my body, it takes yrs to diagnose Sjogren's, I am also a diabetic with hypothyroid. I was told that dry eyes and dry mouth was noticeable but a lot more is effected, it's the entire body, I suffer a lot more then dry mouth and dry eyes, I was told that diabetes and hypothyroid is also an auto immune disease except they are common the others are rare. I could go on and on, there is just to much to post here, looking for others that suffer alone as I do

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E-Pal number 2009-050
Name: MARY
Gender: female
Age: 54
Lives in: Scotland
Years with: not yet diagnosed
About Me: Hi there, I am a 54 year old woman living in Scotland. I am married with a 13 year old son, and I am also a Foster Carer. I enjoy exercise, bike rides and swimming. I take care of Cats for the Cat Protection League. Almost at a diagnosis after not feeling well for a good while. Just looking for someone similar to chat with. Thank you.
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E-Pal number 2009-049
Name: Heidi
Gender: female
Age: 49
Lives in: Oregon, USA
Years with: 12 years
About Me: Symptoms for 12 yrs, but recently diagnosed. I am a mother of 4, very active physically. Always attempting to improve in my life long passion....ice dancing and now understand why all the pain and lack of stamina. Tried Plaquenil for 2 months, but the hair loss and other side effects out weighed the benefits. Now, dry eyes and sinus pressure is a more recent symptom added to the rest. UGH! I would just like to chat with someone who has found some answers. My approach will be boosting my immune system naturally with diet and supplements. Heidi
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E-Pal number 2009-048
Name: Dawn
Gender: female
Age: 46
Lives in: UK
Years with: less then 1 year
About Me: I have been diagnosed with Sjogren's and Mctd in the last 8 months. I am a 46 year old mother of 2 . I am still undergoing many tests and am trying to find out more how to help myself and others stay positive and find a way to cope with all the symptoms. I also have Raynauds Limited Scleroderma and Carpel Tunnel Syndrome and Bronchitasis all which have been diagnosed very recently. I currently take plaquenil and omoprezol. I would like to talk to others near and far.
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E-Pal number 2009-047
Name: James
Gender: male
Age: 33
Lives in: MI, USA
Years with : Pending
About Me: 33 year old male looking for someone to talk to about how to live life to the fullest with sjogrens new to this and i have no family to turn to for advice

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E-Pal number 2009-046
Name: Tera
Gender: female
Age: 32
Lives in: TX, USA
Years with : 3 years
About Me: I am a 32 yr old mother of 2 boys, 10 and 6. I work full time in the automobile industry. I love to watch movies and read magazines, books and newspapers. I am looking for an e-pal who is around my age who would like to share advice, tips and sympathize about this crazy disease.
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E-Pal number 2009-045
Name: Jodi
Gender: female
Age: 41
Lives in: USA
Years with : 5 years
About Me: I don't really know what I want in a "pal". I guess someone my age who I can bounce things off of. I have 2 kids. I home school. I've been married 22 years. I got diagnosed 2 years ago and I feel like I'm just starting to get an idea of what this means...maybe. I try to laugh as much as possible. I'm very blunt sometimes. Maybe that's 75 words??

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E-Pal number 2009-044
Name: Wanda
Gender: female
Age: 35
Lives in: NYC, USA
Years with : recently diagnosed
About Me: I was diagnosed with Rheumatoid Arthritis 2 years ago. Then recently (within the last 2 months) I was also diagnosed with Sjogren's Syndrome and Meniere's Disease. I take many medications for these conditions and I'm looking to communicate with someone who is open to working together to find out ways to deal with this illness, because I'm finding it hard to deal with it alone.
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E-Pal number 2009-043
Name: Elaine
Gender: female
Age: 55
Lives in: Ireland
Years with : 5 years
About Me: I've had Sjogren's for 5yrs, have R/A, thyroid probs & IBS. I moved from England to Ireland 2 yrs ago to my husbands home town. We lived in Cardiff, Wales for4yrs. I have 2 sons 28 & 26& a daughter 23. Id like to write to an e-pal in Wales, England or Ireland.

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E-Pal number 2009-042
Name: Alex
Gender: male
Age: 68
Lives in: Florida, USA
Years with : 1 year
About Me: I am retired, widowed, aerospace engineer and live alone. Since 1994 I have been inundated with autoimmune diseases. First came vitiligo, then pernicious anemia, RA, hypothyroditis, Hashimoto's disease, then secondary SJS. My favorite pass-time is riding my motorcycle, which is severely restricted living in Florida with vitiligo and SJS.
I'm just beginning to learn what living with Sjogren's is all about.
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E-Pal number 2009-041
Name: ES
Gender: female
Age: 32
Lives in: Texas, USA
Years with : 1 year
About Me: Was diagnosed with SS about a year ago. I'm 32 years old a mother of 3 kids. I would like to be able to talk to someone who is right around my age or anyone.
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E-Pal number 2009-040
Name: Cindy
Gender: female
Age: 52
Lives in: Florida, USA
Years with : 6 months
About Me: My name is Cindy and I would really like to talk to someone who lives in Florida and has the same problems as I have. I was just diagnosed with a couple different problems which are Sjogren's, Connective Tissue Disorder and Lupus. Boy, what a mess I am in and I have been healthy all my life until I moved here. I would like to talk to someone who lives in Florida because maybe we could find out why this is happening to us. Maybe its the climate or chemicals they use for plants and all the spraying they do. I had a really bad day today and just thought someone out there could explain to me what's happening to my body. Thank you
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E-Pal number 2009-038
Name: Joel
Gender: male
Age: 56
Lives in: OR, USA
Years with : 30 years
About Me: Recently diagnosed with acute changes last 4 wks in my neurological status (spinal cord involvement). I was placed on ivig for 4 d and then every 4 wks and 10 mg prednisone daily. Does anyone have experience with high dose weekend prednisone? My nephew works at Washington University and that is how they use it there.
 

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E-Pal number 2009-037
Name: Rita
Gender: female
Age: 56
Lives in: SC, USA
Years with : 10 years
About Me: I have Secondary Sjogren's along with Rheumatoid Arthritis and have had many symptom's since my diagnosis in 1999. Dry eye's, corneal ulcers, swollen glands, strawberry tongue, chronic fatigue, fever, flu-like symptoms, Sinusitis, breathing problems etc. I am on Remicade and Methotrexate treatment since 2001 and have gradually done better. I still have flare-ups but God has blessed me with a great sense of humor, faith and friends. Although my friends support me, nobody knows what you are going through until they have been there. I am looking for people to share my experiences with and to try to help someone else like myself.

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E-Pal number 2009-036
Name: Marcia
Gender: female
Age: 41
Lives in: Missouri, USA
Years with : 6 to 8 years
About Me: I have Sjogrens and do not know of anyone else that has it and no doctor even has a clue what it is around my town. What Im looking for is someone that knows what I am going through to talk to. Someone that can help me to understand or just to talk to in my down times. Thank You
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E-Pal number 2009-035
Name: Jean
Gender: female
Age: 56
Lives in: NC, USA
Years with : newly diagnosed
About Me: Have just been dianosed. Dr. recommends I take Plaquenil as I have all the symptoms even though my blood work was negative. Want to correspond with someone about my age/gender who has previously been in good health as I want to know what I can do to help myself through diet, exercise, etc.
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E-Pal number 2009-034
Name: Valentina
Gender: female
Age: 32
Lives in: United Kingdom
Years with : waiting for a diagnosis
About Me: Hi, my name is Valentina, I'm Italian but I have now lived in London for over 10 years.
I have taught English to speakers of other languages for 5 years before leaving my job and re-starting on a Psychology degree. I'm on my second year now. I have started having symptoms in October, dry sinuses, sinusitis etc. As for now hypothyroid and diabetes have been excluded and I'm waiting for a diagnosis. I will join the SICCA project here in London and, hopefully they will be able to diagnose me. I'm looking for someone who is going through the same thing, someone who will listen and that I will listen to.

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E-Pal number 2009-033
Name: Jonnell (mother of 4 year old with Sjogren's)
Gender: female
Age: 4 (child's age)
Lives in: NJ, USA
Years with : Just diagnosed
About Me: I am a parent of a 4 year old little girl diagnosed with Sjogren's I need some help and guidance on how to handle the whining and pain she displays. am also interested on info on asthma and sicca

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E-Pal number 2009-032
Name: Liliana
Gender: female
Age: 27
Lives in: South Carolina, USA
Years with : Just diagnosed
About Me: Hi, my name is Liliana. I have just been diagnosed with Sjogren's. I am experiencing the dry eyes and the dry skin. I have a decreased amount of saliva, but my mouth is not really dry yet. I also have dry lips. I would like to talk to someone that has tried natural alternatives & find out about their experience with that.
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E-Pal number 2009-031
Name: Priscilla
Gender: female
Age: 31
Lives in: Texas, USA
Years with : diagnosed 5 months ago
About Me: Hello, I learned I had Sjogren's a few months ago. I would like to talk to anyone who has some tips on how to overcome the fatigue nothing seems to help me. I am on meds. I have a seven year old son in which I need to have energy. Thanks, hope to hear from you.

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E-Pal number 2009-030
Name: Carol
Gender: female
Age: 56
Lives in: MN, USA
Years with : 1 year
About Me: Newly diagnosed most likely secondary to my auto-Immmune thyroiditis. I am looking for someone to hold my hand and cheer me on, while I do the same for them...especially someone to laugh with, share the stuff we can't seem to share w/family and friends. I need a pal who knows what's next. THANKS!!
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E-Pal number 2009-029
Name: Marsha
Gender: female
Age: 42
Lives in: OH, USA
Years with : 15 years
About Me: Hi all! I've had Sjogren's ,or at least been diagnosed with it, for about 15yrs now. I think I've probably had it my whole life tho. I'm 42 and it feels like the symptoms are getting worse. Usually my approach to it is that's just me and it will get better but I'm starting to think that's not the best way to deal with it. I'm looking to talk to people who are actively managing this so I have fewer days of feeling just plain tired and sore.
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E-Pal number 2009-028
Name: Melissa
Gender: female
Age: 35
Lives in: Nebraska, USA
Years with : many
About Me: I am 35 years old and was diagnosed last year with Sjogren's. I have had symptoms and hospitalizations for many years. I am a nurse and sometimes have difficulty while at work. I am looking for someone to chat with and someone to support and cheer on!
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E-Pal number 2009-027
Name: Vessi
Gender: female
Age: 25
Lives in: Indiana, USA
Years with : newly diagnosed
About Me: Hello,
I am a paramedic, married, no kids. I was born in Bulgaria (Eastern Europe), and moved to the US when I was 17. The SS symptoms started 2 years ago. Until recently I hadn’t heard of Sjogren’s. I had Lasik eye surgery done about the same time my dry eyes began, so my dr. dismissed it as a side effect of the surgery. I have the dry mouth as well, (always have water near by in the ambulance). My dr. is still testing to determine if it is SS or LUPUS, or both. I am determined to live my life to the fullest, and won’t let this disease stop me. Diet changes, lifestyle changes, I will do whatever it takes. Anyone with advice or just looking for a friend is welcome to e-mail me.
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E-Pal number 2009-026
Name: Florine
Gender: female
Age: 22
Lives in: UK, Guildford
Years with : new diagnostic
About Me: Hello!
I'm french and i'm doing an engineering placement in guildford, UK. From february 2008,( it started while i was doing an erasmus exchange in spain..)
I have been through a lot of CNS problems, Optical neuritis, leg weakness >> Wheelchair...Lots of cortisone infusions (40 days)... but fortunately I'm well again after the infusions. Sjogren is my last diagnostic after MS and Devic...I'm waiting to start a treatment. I would be happy to chat with someone who can understand how difficult it is to live without knowing what you have.... If you live in UK next to london it would be even better, we could meet in real life..:-) but if not its also ok I like to travel :-) Hope to talk with you soon ! Cheers
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E-Pal number 2009-025
Name: Debora
Gender: female
Age: 51
Lives in: Idaho, USA
Years with : 3 years
About Me: recently diagnosed, have had symptoms for several years. I am a grandmother and I work full time as a medical coder. It's harder and harder to manage the symptoms and balance family life and work. I don't want to quit, don't want disability - just want to learn how to cope. I'd like friend to talk with that understands the daily struggle

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E-Pal number 2009-024
Name: Joy
Gender: female
Age: 22
Lives in: London, UK
Years with : 5 years
About Me: Hi My name is Joy and I am interested in finding an e-pal who shares the same interests as me and is around the same age group. I was diagnosed last year April but have had symptoms since I was 17. I'm currently in my last year of University, studying Information Systems. I love music, the arts, anime, films and games... If there is anyone out there who wants an e-pal to share experiences with as well as receive and give support to, then I would be happy to be that person :)

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E-Pal number 2009-023
Name: Shas
Gender: female
Age: 40
Lives in: Munich, Germany
Years with : 10 years
About Me: Hi, I have been suffering from SS for at least 10 years and was finally diagnosed 2 years ago. Fed up of doctors asking if the cause of my symptoms are stress. Like many others I have little understanding from other people about my condition, in other words I have to fight to be sick!! I would love to just be in contact with other sufferers. Drop me a line.

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E-Pal number 2009-021
Name: Jackie
Gender: female
Age: 38
Lives in: HI, USA
Years with : 2 years
About Me: Hi my name is Jackie this is the first time I have known of others with my Sjogrens. I feel alone and have 2 other autoimmune disease's. Its hard on my family but i am very blessed to have wonderful friends and family. I just want to talk to someone who knows how i feel and would like any information that i don't know yet.
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E-Pal number 2009-020
Name: JJ
Gender: female
Age: 44
Lives in: IL, USA
Years with : 4 yrs diagnosed
About Me: I would like to find some folks close to where I live just to be able to talk face to face with...but also e-pal folks who can understand what we go through. I love everyone on this site and finding a close personal friend would be so very cool. My BF and I like to ride and attend rallies..and as much as he cares for me cannot seem to wrap his head around it.

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E-Pal number 2009-019
Name: Aurea
Gender: female
Age: 40
Lives in: NY, USA
Years with : 1?
About Me: Hi all. I'm a 40 year old female with sjogrens. I was diagnosed a bout a year ago. I have two wonderful grown kids who are very supportive. I've worked with animals for the last 15 years but had to quit my job because of extreme joint pain and inflammation. Now after some recovery I am able to go to school and hopefully change my career. I only know one other person with sjogrens and her symptoms are different from mine. Sometimes it feels like I'm the only one suffering from this. So if you would like to talk and give each other advise on how to cope and and make this a little easier to live with, please feel free.

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E-Pal number 2009-018
Name: Jackie
Gender: female
Age: 51
Lives in: VA, USA
Years with : 4
About Me: I have had Sjogrens for 4 years now, symptoms are dry eyes, nose, ears, mouth, renal tubular acidosis. Kidney stones, fatigue, aching body, numbness. I'm raising my 9yr old grandson with (ADHD). Until I read about you guys on the internet, I thought my fatigue was in my mind. Now almost 5yrs later and my hair wants to start breaking off. Is there anyone out there that's going though the same as I am, I would like to hear from you

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E-Pal number 2009-017
Name: Beth
Gender: female
Age: 52
Lives in: Iowa, USA
Years with : 11
About Me: I've had all the appropriate symptoms of Sjogren's for close to 11 years now (thinking back), but was not diagnosed until about 2 years ago. My eye doctor had a suspicion because I kept going in with inflamed corneas and my eyes were so dry, so I was sent to a Rheumatologist, who said he was certain I had Sjogren's despite my blood tests coming back negative for all the various antibodies. He put me on Plaquenil and an anti-inflammatory called Sulendac, which I later quit taking because it tore up my stomach so bad. Everything about my body is experiencing dryness (eyes, mouth, lips, throat, vaginal area, skin), I invariably hurt everywhere, and I have experienced fatigue so profound it boggles my mind. The parotid gland on my left side swells so much sometimes that it causes me to bite the inside of my cheek. In the past year my dentist has found 3 cavities and 3 chipped teeth I manage to work full-time, but in front of a computer all day, it does no favors for my dry eyes. I use Restasis as well as OTC eye moisteners (mostly Optive). Just yesterday I passed two kidney stones (same thing last year). Lately, while at work, I have had to use the eye drops as often as every half hour. I'm grateful for an opportunity to communicate with others having the same experiences because even though my friends and acquaintances shake their heads in sympathy and wish me well, I know there's no possible way for them to understand what I'm really going through; ditto my husband. I suspect that, in secret, more than half of them think I'm a hypochondriac, and I would put a few doctors in that same category. My third set of blood tests in two years was run this week, with everything still negative. The doc (a different Rheumy than the one who diagnosed me) says he thinks my type 2 diabetes is the cause of ALL these symptoms and he hates to put me through a lip biopsy "just to rule Sjogren's out." It seems to me that the only ones who DO need the biopsy are those who have all the symptoms but don't have the positive serology. Why waste a biopsy on someone who's already got the proof in their blood work? I can offer a lot of understanding to others going through this, and need some of my own!

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E-Pal number 2009-016
Name: Gayle
Gender: female
Age: 53
Lives in: OR, USA
Years with : newly diagnosed
About Me: Have had symptoms for years but was just diagnosed with Sjogren's today. I'm scared about the future and would love someone to "talk" to. Anyone interested in support and friendship welcome.
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E-Pal number 2009-015
Name: Gayle
Gender: female
Age: 53
Lives in: OR, USA
Years with : newly diagnosed
About Me: Have had symptoms for years but was just diagnosed with Sjogren's today. I'm scared about the future and would love someone to "talk" to. Anyone interested in support and friendship welcome.

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E-Pal number 2009-014
Name: Nancy
Gender: female
Age: 47
Lives in: IN, USA
Years with : 5 years
About Me: Hello. I am looking to talk with others who are suffering from this disease to compare notes on treatments used to try and improve our quality of life. My symptoms have affected my life in a very negative way. I once was a very active, outgoing, energetic and overall happy person. That has all changed for me with this disease. I hope we can help each other.

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E-Pal number 2009-013
Name: Kelly
Gender: female
Age: 32
Lives in: Wales, UK
Years with : 1 1/2 years
About Me: Hi I am a 32 year old single parent who has been afraid and suffering for about a year and a half so far. am seeing various specialists, hospitals, doctors but the more I read about Sjogren's the more definite i am that i have it. The thing that is the worst is feeling so lonely and that friends and family think i may be going mad. Would just love a friend right

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E-Pal number 2009-012
Name: Shelly
Gender: female
Age: 37
Lives in: Oregon, USA
Years with : 7 months
About Me: My name is Shelly I have 3 great boys and a wonderful husband. I love animals, 4H, fishing, hunting, and gardening. Basically anything outside. I haven't officially been diagnosed with Sjogren's however, my RA thinks that is what I have. I am scheduled for more test. I have the symptoms that have been mentioned with Sjogrens.
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E-Pal number 2009-011
Name: Carol
Gender: female
Age: 46
Lives in: Michigan, USA
Years with : tested positive for Sjogrens antibody
About Me: I'm married with no children and recently tested positive for secondary Sjogren's antibody. The primary antibody I tested positive for seems to be SLE (Lupus) although I don't seem to have any symptoms. I believe I am having early symptoms of Sjogrens (dry eyes, mouth, and tingling in arms/legs). Interested in talking to someone to help me understand this syndrome better, how to cope, or anyone newly diagnosed to chat with about their issues with the disease.
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E-Pal number 2009-010
Name: Carol
Gender: female
Age: 46
Lives in: Michigan, USA
Years with : tested positive for Sjogrens antibody
About Me: I'm married with no children and recently tested positive for secondary Sjogren's antibody. The primary antibody I tested positive for seems to be SLE (Lupus) although I don't seem to have any symptoms. I believe I am having early symptoms of Sjogrens (dry eyes, mouth, and tingling in arms/legs). Interested in talking to someone to help me understand this syndrome better, how to cope, or anyone newly diagnosed to chat with about their issues with the disease.
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E-Pal number 2009-009
Name: Karen
Gender: female
Age: 46
Lives in: Canada
Years with : 3 years
About Me: Hi Friends! Just diagnosed with SS; previously had a hyperactive and hypoactive thyroid, but haven't taken thyroid meds in years. Main problem is extremely dry eyes; no tears. Also have dry mouth, swollen glands and other "symptoms of the day". I work full-time, gazing at a computer screen 8 hrs/day. I'm single with a wonderful daughter; enjoy travelling, concerts, piano, playing cards. Want to meet someone for mutual support/tip-sharing. I won't exclude anyone but I'd be particularly interested in hearing from fellow Canadians who've had success with their drug plans covering eye drops; I've been denied and this is getting expensive!!
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E-Pal number 2009-008
Name: Brenda
Gender: female
Age: 44
Lives in: Iowa, USA
Years with : 8 months
About Me: I have recently been diagnosed with Sjogren's. I have 2 teenage children and a wonderful husband. I am having trouble communicating with so many different doctors about so many different symptoms. Symptoms include; migraine hand other unidentified headaches, joint pain, dry eyes, dry mouth, abdominal pain, IBS, asthma type lung problems, foot pain, hair loss, foot, hand and face tingling and intense fatigue. I have wonderful family support but I feel it would be nice to get to know people, like myself, who have to live with all of this. I am curious to find out how people are able to maintain stable employment through all of the medical issues. My interests include trees, flowers, plants, animals, beautiful landscapes and camping.

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E-Pal number 2009-007
Name: Dan
Gender: male
Age: 45
Lives in: Atl. Georgia, USA
Years with : 2 1/2 years
About Me: I am a happily married man. I have ignored this for way to long, so I suddenly am experiencing a barrage of symptoms. I love coaching my kids in sports or chaperoning field trips. I am not working now as the result of a 2 level lumbar spinal fusion. I used to be active working 2 jobs minimum, now I collect Worker's Comp, which Bites. I hope to settle my W/C claim soon and try to get on with whatever kind of life I can have. I look forward to conversing with people that know what this is like.
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E-Pal number 2009-006
Name: Nicolasa
Gender: female
Age: 19
Lives in: New York, USA
Years with : 4+ years
About Me: MY Name is Nicolasa i go by Nikki for Short. I'm gonna be 19 on Jan 26. I have been diagnosed with Sjogren's & 4 other Chronic Diseases. I was fully Diagnosed in may of 2008 (when i say fully i mean the doctors have been scratching their heads for 4 years trying to figure out everything that's wrong with me). I live my life now for god (through the process of diagnoses i stopped believing in god & blamed him for everything that has happened) but now i believe he has a bigger purpose for me. I Love to sing, i am learning to play Guitar, I'm into photography,& when the words come to me i write. I love music & I watch alot of movies. But other then that i am in college for Early childhood Education. i am also a Hockey Fan (Sabres all the way!!). i'm a very Nurturing person, kind, and i love to help people when they need me. Also i'm a good listener. I've always wondered what it would be like to have an E-Pal, But to actually Email someone who is going threw the same things i am going threw, Amazing!! I am looking for someone to talk to that is my age & someone who is going threw the same things i am going threw.
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E-Pal number 2009-005
Name: Brenda
Gender: female
Age: 54
Lives in: Florida, USA
Years with : 7 years
About Me: I was dx's w/SS after seeing several rheumatologists, and also have fibromyalgia and arthritis. My Sjogren's has been getting progressively worse, and this past month has been almost more than I can take at night time. During the day I can take Evoxac, Plaquenil, Restasis, and NSAIDs for pain, but when nighttime comes, I dread going to sleep. I run a warm humidifier and still wake up about every two hrs to drink water, rub my eyes w/water, and take a mouthful of synthetic saliva, not to mention the pain all over my body. Then later of course I have to go to the bathroom, and the cycle continues. I am so depressed. This is the worst it has ever been, and I have found this site hoping for support from someone who understands. I know there is not a cure, but I can hope that God continues to give me the strength to endure. I just need to not feel so alone right now.
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E-Pal number 2009-004
Name: Tanya
Gender: female
Age: 38
Lives in: Tenn., USA
Years with : newly diagnosed
About Me: I am interested in talking with people who have had Sjogren's for some time or recently diagnosed to understand some of their symptoms, doctors, and how to deal with this disease.

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E-Pal number 2009-003
Name: Bridgett
Gender: female
Age: 34
Lives in:
Years with : 3 years
About Me: I am married with three children and a nurse. I feel I have had this most of my life since age 12y I have had chronic left neck gland infection. until recent have had postive testing so I would love to know if my symptoms are real I have so many question and the doctors don't seem to answer so if anyone could help please email me.
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E-Pal number 2009-002
Name: Linda
Gender: female
Age: 56
Lives in: AL, USA
Years with : 14 years
About Me: I am 56 years old and I have six beautiful grandchildren. I was diagnosed with Lupus, Fibromyalgia and then SS. I've had 3 blot clots on my lungs, I have Hyperthyroldism, Diabetes, Severe pain, Depression, weight gain, forgetfulness and I don't sleep. I had to stop work but now I own a business and it has been hard to keep it going.
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E-Pal number 2009-001
Name: Lee Ann
Gender: female
Age: 55
Lives in: Indiana, USA
Years with : 2 years
About Me: I am married with 3 children. One still at home. Five years ago I was diagnosed with Breast Cancer. Then after coming through that I was told I have RA and Sjogren's. In the past year I have had greater than usual trouble in walking and extreme pain. I have muscle weakness and my legs hurt all the time. Until 5 years ago I was very active and fit. Now I am scared of being in a wheelchair which I now have but am fighting not to give in to it. I think something else is going on, and need to check back with my rheumatologist. Any one else having problems like this? I really don't know all the symptoms of Sjogren's. Maybe this is par for the course?

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E-Pal number 2008-158
Name: Lynn
Gender: female
Age: 66
Lives in: Nebraska, Washington & Oregon, USA
Years with : since childhood
About Me: Hello I'm LadyWillow. Had Polio as a child - possible trigger for Fibromyalgia and Sjogrens. Currently married, girls grown and live away from home. Enjoy being creative as a FiberARTist and Photographer, love good movies and interesting books, but miss having the energy to socialize more with others. Officially diagnosed in 1998.
Currently on Plaquenil and Minocin. After being diagnosed and treated for several "stealth" virus, have managed to live a a better quality of life with a strict diet, pacing my energy and high quality supplements. Sleep also improved. Continue to struggle with ongoing fevers, swollen glands, body aches and pains as well as fatigue whenever the body feels stressed.
Willing to share what works for me, and interested in learning about new research. My goal is to maintain and improve my health as much as possible into my "senior" years. /;)
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E-Pal number 2008-157
Name: Julie
Gender: female
Age: 39
Lives in: Illinois, USA
Years with : 3+ years
About Me: Hi There, I am 39 yo, diagnosed with SS along with multiple other autoimmune diseases, my story probably isn't much different than many of yours. I have two young children and work as an RN. looking for people who can relate with all of this non-sense!
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E-Pal number 2008-156
Name: Rafaela
Gender: female
Age: 40
Lives in: NY, USA
Years with : 7 months
About Me: I am a single mother of a seven years old boy, I am from the Dominican Rep. and work as a case manager. This a new condition for me, at this time I feel very depreesed and scare, searching for the right treatment and understanding my condition. I am looking for some support and may be some information that help me understand better this condion.
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E-Pal number 2008-155
Name: Judy
Gender: female
Age: 60
Lives in: NY, USA
Years with : 6 years
About Me: Wish to correspond with someone who has tested negative for SS with blood tests but positive with eye and oral tests including lip biopsy. I am finding it very frustrating to have three drs. tell me "yes" I have SS and one tells me "no" I don't. Also wish to correspond with anyone who is experiencing on-going fatigue, muscle aches, joint pain and numbness in addition to the chronic dry eye and mouth issues
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E-Pal number 2008-154
Name: Catherine
Gender: female
Age: 47
Lives in: Maryland, USA
Years with : 12 years
About Me: I'm a 47 year old mother of two great school age kids. I was diagnosed with Sjogren's about 12 years ago. The worst thing is the fatigue! I try to exercise every day because that helps me to feel better but I'm still exhausted at night. My husband and friends are very supportive, but of course they don't understand. I would love to have a few email pals that I can 'share' with: our good times, our bad times, any helpful hints for making it through the day. Thanks!
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E-Pal number 2008-153
Name: Cathy
Gender: female
Age: 50
Lives in: Texas, USA
Years with : 7 years
About Me: Looking for someone to exchange emails with who have the same condition. Enjoy reading, needlepoint, crocheting, golf and TV
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E-Pal number 2008-152
Name: Vivian
Gender: female
Age: 31
Lives in: Washington, USA
Years with : 3+years
About Me: As of the time of this post, this is my 2nd time being diagnosed with Primary Sjogren's. For the last 2 years I was told I have Lupus with Sjogren's & Raynaud's as secondary syndrome's. Previously, I tried to research Sjogren's online however there really aren't many sites I find engaging. I have a 3 yo son who unfortunately knows all too well of sickness since my symptoms really took a hold of me shortly after his birth. My hope is to find other's who I can learn from and with about this disease
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E-Pal number 2008-151
Name: Mary Ann
Gender: female
Age: 50
Lives in: PA, USA
Years with : unknown
About Me: I was diagnosed with Sjogren's about 4 years ago, but have been suffering with it's symptoms for many, many years....just never knew what to blame it on. Having "phantom smells" about 4 years ago, a small brain stem lesion was found during an MRI. From there I was misdiagnosed with MS, but I do see a neurologist to keep a close watch on the lesion. This is when I was diagnosed with Sjogren's. I have all the typical symptoms of dry eyes, nose, mouth, but a year ago developed severe bilateral tinnitus, which I have spent a lot of time and money trying to get rid of, to no avail. I'm wondering if anyone here has had tinnitus with their Sjogren's, and if anyone has also been diagnosed with Cohn's Disease along with the Sjogren's?
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E-Pal number 2008-150
Name: Barbara
Gender: female
Age: 47
Lives in: Texas, USA
Years with : 3 years
About Me: I have recently been diagnosed with Sjogren’s syndrome. I know now that I have had this disease for about three years. I’m having a lot of trouble adjusting to my illness. I use to be the person that made everyone laugh now I spend most of my time alone. I’m a Commercial Property Manager and use to a great deal of stress. My work requires travel and long hours however lately I find it very difficult to hold up to the pressure. I have tried to research Sjogren’s on line and bought a few books to try to make sense out of all of this, I’m not having much luck. I’m looking for a very down to earth person that may be able to help me understand all of this. I also would like someone to just share experiences with. I have good days and bad days. My main problem at this time is Brain Fog, short term memory and concentration level. I never discuss my situation with anyone; I don’t want to be viewed as poor Barb. Nor do I want to worry my family so I pretend that all is fine. I grew up in the Midwest, Mentor Ohio, relocated to Dallas Texas in the early 80’s. I love my home and I have a house full of animals, Married, going on 20 years, three step sons, no children of my own (except my four legged ones). I found this web page and I’m hoping to find some friends not only to share experiences with and learn more about Sjogren’s but I would also like to find friends that like to joke and laugh.
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E-Pal number 2008-149
Name: Sara
Gender: female
Age: 15
Lives in:
Years with : 5 months
About Me: Hey my name is Sara. I was diagnosed with a mild case of Sjogren's syndrome in June of this year. That is the only thing that I have been diagnosed with so far hope it will be the only one. I have dry mouth, but I have yet had dry eyes. I like to hang out with my friends and family
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E-Pal number 2008-148
Name: Pat
Gender: female
Age: 55
Lives in: Illinois, USA
Years with : newly diagnosed
About Me: I've been in the healthcare field for 35+ years, married and have two married children, ages 29 and 25. Recent symptoms of dry mouth are driving me crazy. I know Sjogren's manifestations can be much worse but how can I get a handle on the dry mouth since it's causing me a lot of anxiety and insomnia. The muscle aches have been around for about 10 years as well as the fatigue and I've had an easier time adjusting to that compared to the dry mouth and eyes. Just looking for a pal to swap stories so I don't feel so alone. ANY AND ALL suggestions will be greatly appreciated.
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E-Pal number 2008-147
Name: Rosemary
Gender: female
Age: 38
Lives in: Fl, USA
Years with :2 years
About Me: I was diagnosed last year after YEARS of tests and unnecessary treatments since the doctors couldn't find out what was wrong with me! After reading the couple of comments below, I think I'm pretty lucky. Besides the dryness which I'm handling quite well, the joint pain is not that severe. I barely wear contacts now 'cause I got an ulcer in my cornea compliments of Sjogren's. Anyways, I really hope they find a cure. Let's spread the word! Good luck!
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E-Pal number 2008-146
Name: Lois
Gender: female
Age: 50
Lives in: Western Australia
Years with :18 years
About Me: I am married living in Perth, work 4 days a week having Wednesdays off. Enjoy playing piano, gardening, nature shows, socializing with friends. Would like to share my Sjogren's journey with someone, particularly in Perth, Australia as I have no contact with SS sufferers. Glyconutrients, a natural product, has been of great benefit to me. Hubby stumbled on this site which I'm hoping will help me find an e-pal.
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E-Pal number 2008-145
Name: Teresa
Gender: female
Age: 47
Lives in: Ohio, USA
Years with : newly diagnosed
About Me: I am an Intervention Specialist in Akron Ohio. I live in Louisvile Ohio, which is a little town just east of Canton. I have my Masters degree in Education and my license in Special Education. My first husband pass away in October of 2003, We have three beautiful and talented children, Ages F-14, F-22(Military, & Married) Son- 25 ( His son, My first Grand baby 8 weeks. I recently remarried and now have two step-children. I would love to have a friend who I could talk to who understands what living with this is all about. I don't want sympathy just encouragement and understanding.
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E-Pal number 2008-144
Name: Maria
Gender: female
Age: 32
Lives in: FL, USA
Years with : 1 year
About Me: I apologize for my very-basic English grammar)
Hi, my name is Maria Iglesias, I am 32 years old, married, mother of 2 kids, and diagnosticated with Sjogrens and RA that affect my entire body, from head to toe, an year ago, I am taking plaquenil, prednisone, naproxen and recently diuretics for my every day worse inflammation-water retention.
My eyes and mouth are dry and affected too.
This illness changed my life, that's why, I want to participate at Sjögren's Syndrome Registry at UCSF.
I APPRECIATE EVERYBODYS FEEDBACK, THANK YOU SO MUCH!!!
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E-Pal number 2008-143
Name: Katherine
Gender: female
Age: 48
Lives in: WI, USA
Years with : 20+ years
About Me: My most concerning issues with Sjogren's are my lung problems, forgetfulness and chronic fatigue or exhaustion. Since I was 16, I remember dentists and hygienists telling me I have poor hygiene (plaque) and brush too hard (receding gums). This contradiction perplexed me for many years before I was finally diagnosed with Sjogren's (light bulb).
My chronic bronchitis, lung infections, exhaustion, coldness, and confusion make me wonder how long I will last. Friends talk about when they want to retire. I just want to live long enough to retire. Often, I feel I won't be around much longer.
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E-Pal number 2008-142
Name: Tracy
Gender: female
Age: 47
Lives in: USA
Years with : 6 years
About Me: Although diagnosed in 2002, I suspect I have been living with SS for about 8 years. Fatigue, dry eyes, dry mouth, and joint pain are the most troubling symptoms for me. Worrying about worse things like lymphoma and major organ involvement are always on my mind. I've just been denied medical insurance coverage because of SS when shopping around for a cheaper premium after husband's group plan increased by 100%. I am thankful to even have coverage now even at a very high cost. My priorities include my faith in God, my family, and my friends. Would love to communicate with someone similar in age and circumstances
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E-Pal number 2008-141
Name: Betsy
Gender: female
Age: 55
Lives in: FL, USA
Years with : newly diagnosed
About Me: I am a clinical associate professor at the University of Florida. Ironically, I teach speech-language pathology. I am married and have 3 grown children. I was diagnosed with mixed connective tissue disease (primarily systemic sclerosis with some symptoms of myositis) in 1988. I have been sick since July, and my dentist and physicians think I have Sjogren's. I'm looking for information and advice from others who have Sjogren's.
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E-Pal number 2008-140
Name: Sue
Gender: female
Age: 47
Lives in: Arkansas, USA
Years with : in process of diagnosis
About Me: I am a 47 yr old grandmother of 5. I have been diagnosed with Sjogren's for 5 years and have recently been diagnosed with Rheumatoid Arthritis. I also have fibromyalgia, depression/anxiety, IBS, Osteoarthritis, degenerative joint disease...and the list goes on. I am looking for someone that I can talk to who understands this illness and can just be a comforter and supporter. I have been married for 8 months and my husband is wonderful. He is always there and tries to understand but unless you actually experience the pain and fatigue and everything else that goes with it you can't fully understand. If you would like an e-pal just drop me a line. I'm a good listener and friend.
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E-Pal number 2008-139
Name: Mia
Gender: female
Age: 43
Lives in: Texas, USA
Years with : in process of diagnosis
About Me: Hi, grandmother had Lupus, Osteo & RA, mom has RA & Osteo. I've been diagnosed with RA. About to start followup visits and see if I have Sjogrens. Very dry mouth, dry, red, gritty feeling eyes, blurry vision, TIRED, achy joints. Wow, there's people out there that think I'm crazy :). Would love to correspond with someone "in the know".
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E-Pal number 2008-138
Name: Anna
Gender: female
Age: 46
Lives in: Australia
Years with : 19 years
About Me: Diagnosed with primary Sjogren's after birth of first child when 27, its been many years of dryness, fatique and swollen glands. Five years ago had chemo for non Hodgkin's lymphoma and everything seems to be going ok at present.
Lots of bad and good days. My wonderful husband and beautiful children are what keep me going.
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E-Pal number 2008-137
Name: Sharon
Gender: female
Age: 50
Lives in: USA
Years with : 14 years
About Me: i am 50 years old w/three children24,21,14. i am always searching for people with sjorgren,s to share informatoon with. i have found a product on line which sounds good. was wondering if anyone has tried it.
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E-Pal number 2008-136
Name: Sarah
Gender: female
Age: 49
Lives in: MA., USA
Years with : diagnosis pending
About Me: After 10 years of illness I was diagnosed with celiac disease, fibromyalgia and thyroid disease. I worked hard to get my health back and enjoyed 3-4 years of comfort. It's all falling apart now - ANA of 5120, debilitating pain, even my dog has lupus! I'm waiting for new test results, researching lupus and Sjogren's. I've been through frustration and fear, I'm lucky my husband understands. I think I could be supportive to someone new to autoimmune conditions.
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E-Pal number 2008-135
Name: Corrie
Gender: female
Age: 38
Lives in: Sacramento, CA
Years with : 15
About Me: Hi, My name is Corrie and I live in Sacramento, CA. I have had SS for about 15 years and am getting more diagnosis everyday, it seems. I also have Renal Tubular Acidosis, Protienuria, Reynauds, Hypothyroidism and of course depression and anxiety. I live with my husband and 3 teenagers who all try their best to help and understand me. However, it would be nice to know some people who actually know what I am going through.
I look forward to hearing from some people who know what it is like to live with SS!
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E-Pal number 2008-134
Name: Chris
Gender: male
Age: 35
Lives in: Laguna hills, CA, USA
Years with : 1?
About Me: 2 years ago, I was admitted to the local hospital with a pulmonary embolism in each lung and a severe lung infection. They never figured out the cause. Almost exactly a year later, I ended up in the hosp for 3 weeks. Learned I have Sjogren's and likely also lupus. Also very high blood pressure. 2nd trip to hosp, had no saliva, could not swallow food hardly, was severely dehydrated. Had a pneumothorax (collapsed lung) month later, and then another hosp visit. Taking anti-coag for clots, anti-malarial for lupus, and hi blood pressure medication, and just drink lots of water for the Sjogren's and use natural tears eye drops a LOT. I would like to talk with others with similar experiences...
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E-Pal number 2008-133
Name: Jay
Gender: female
Age: 66
Lives in: Ontario, Canada
Years with : 10+
About Me: I was diagnosed after 8 years, every test was performed but it was not until I asked my physician if it could be lupus he did not think so but did the test anyway to rule that out Sjogren's showed up. I have had the eye test which also confirmed this and see my dentist on a regular basis. I enjoy quilting, reading, have two dogs and am looking for someone to chap
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E-Pal number 2008-132
Name: Felicia
Gender: female
Age: 35
Lives in: Washington, USA
Years with : newly diagnosed
About Me: I'm a married mother of 3, in the process of quiting my own in home daycare/preschool businees to take care of myself and my family. I've been ill for the past few years but was told it was stress, finally in March 08 my php sent me to a rheumy where i was diagnosed with fibromyalgia. In Sept 08 with new worsening symptoms I had more blood work done and was given the diagnosis of Sjogren's Syndrome. I seem to have lost touch with all of my friends who actually have energy to do things other then work on a regular basis and I don't think they understand the extent of my illness and my limitations. Im looking for friends who understand and whom I can understand and relate with.
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E-Pal number 2008-131
Name: Dawn
Gender: female
Age: 32
Lives in: Ohio, USA
Years with : 2
About Me: I am a wife and mother of twin girls. I got diagnosed in 2007 but have been dealing with it for longer. I also have had to have a double parotidectomy because of my disease. I enjoy music and singing and love movies. Just wanting to talk with someone who has Sjogren's and just have someone to talk with about it and not feel like I am alone.
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E-Pal number 2008-130
Name: Lisa
Gender: female
Age: 42
Lives in: Milwaukee WI, USA
Years with : 2+
About Me: Greetings- I have read over quite a few entries- I am finding that I am blessed. I have Renaulds & Sjogrens. After being extremely active in the US Navy for 21 years- now I can barely hold down a part time job, make dinner, care for our two children, 9 & 5, before I pass out at night! I also have been in ministry- 20yrs- a pastor's wife for the last 5yrs. Would like to encourage and inspire others as the Lord leads and opens doors. Be encouraged- there is a reason for all of this stuff going on in our bodies!
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E-Pal number 2008-129
Name: Kim
Gender: female
Age: 29
Lives in: NJ, USA
Years with : pending official diagnosis
About Me: I have been sick with autoimmune related problems for 18 years. It has been very frustrating, scary and lonely. It's hard for others to understand what you're going through. I would like a friend who I can talk to about my illness and can actually know where I am coming from. My labs are confusing and it's not very reassuring when your own doctor tells you that you're a mystery. I'm in pain all the time and am fatigued...I've lost so much of who I am. My IGG levels have fluctuated since I was 12, after being diagnosed with Mono. They are now about 1000 points over the norm on both the first and second subclasses. My ANA is very high with a titer of 640. I also am positive for BOTH SSa and SSb antibodies! I may also have Lupus. Please e-mail me if you'd like to talk. I could use some support as I'm sure we all could.
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E-Pal number 2008-128
Name: Donna
Gender: female
Age: 54
Lives in: Indiana, USA
Years with : less than 1 year
About Me: I am 54 yr old female have been an LPN for 11 yrs just had to stop working because of Sjogren's and rheumatoid arthritis and lupus. having a lot of bad days right now and trying not to get stressed knowing this is one of my big enemies . needing some one to chat to now and then and hope to get acquainted with others with same problems
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E-Pal number 2008-127
Name: Elisha
Gender: female
Age: 25
Lives in: NJ, USA
Years with : 3 &1/2 years
About Me: I am 25 years old and live in Oceanport, NJ with my pug who is almost 2, named Harley. I have a wonderful boyfriend who is a fireman and currently lives in VA and works in MD. It is hard to be away from him and I have lost all my other friends because they do not understand this illness and could not deal with me anymore being sick. It is hard to live everyday, I won't lie, and I have just attempted suicide last week by overdosing on my pills and wound up in the ICU. I just couldn't take the pain anymore. As you can see I am very lonely and my parents do not understand anything I am going through. I have every single symptom from this terrible illness and so far haven't responded to any treatments thus far. I have had symptoms for three and a half years and was only diagnosed two years ago. I am on pain medicine every 5 hours because the joint and muscle pain is so bad. I have all four of my eye ducts pluged because they are so dry and have dry mouth and nose. I also suffer from kidney stones and have had 30 kidney stones since 2001. I am always dehydrated and am also have nerve pain and numbness and tingling in my arms and legs. I can't sleep at night due to the pain all throughout my body. The worst pain is in my low back, neck and legs. I am looking for someone to talk to who can truly understand what it means to suffer and be a friend. I can not work due to my illnesses and suffer from depression and IBS as well (irritable bowl syndrome). If you can be a friend, please e-mail me and be my e-pal. I am a sweet caring girl who is a great friend
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E-Pal number 2008-126
Name: Millie
Gender: female
Age: 66
Lives in: NE, USA
Years with : 1 &1/2 years
About Me: I am semi-retired but work part time as a baker; usually three days a week. I enjoy reading mystery books and am a home body. I find myself having trouble coping with the Sjogren's effect on my mouth (always tender; hard to eat) and not knowing if other symptoms are related to it or something else. I am looking for information as my Dr does not take a lot of time during visits.
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E-Pal number 2008-125
Name: Duncan
Gender: male
Age: 46
Lives in: Midlands, England
Years with : 1 year
About Me: Hi , My name is Duncan and I live near Nottingham, UK. Really noticed I had a problem last Winter/Spring - dry lips, mouth and eyes. Not official yet but Doctor (number 5!) and Ophthalmologist (number 3!) say Sjogren's and I visit the Rheumatologist soon. Don't mind hearing from anyone but I would be interested in any alternate approaches people have taken and also for eyes if people have coped working in air conned environments and staring at a computer screen all day. I am currently having acupuncture/chinese herbs but not with any success. And me.. divorced, two children, like sport and outdoors generally.
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E-Pal number 2008-124
Name: Jean
Gender: female
Age: 49
Lives in: Wisconsin, USA
Years with : 10 years
About Me: Married, 3 children. Work for husband's masonry business. I love quilting, gardening and long walks. I suffer with trigeminal neuropathy. I would like to chat with someone who might understand what it is like to have facial numbness and burning.....

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E-Pal number 2008-123
Name: Kristi
Gender: female
Age: 27
Lives in: IL, USA
Years with : 1 month
About Me: I was recently diagnosed with Sjogren's. I have been battling ITP, low platelets for 9 months. I am looking for someone to give me advice or information about Sjogren's.
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E-Pal number 2008-122
Name: Joanie
Gender: female
Age: 52
Lives in: Canada
Years with : 8 months
About Me: I am Widowed just 6 years, but now in a relationship. I have 4 Son's and 6 Grandchildren. I have been off work a year due to my health issues, but only got a diagnosis of Sjogren's Syndrome in February of this year,also Osteoarthritis. My Boyfriend is a Blues Musician. I love Blues & Many other genres, I am into the self help books and my computer. I'm looking for an E-Pal with same or similar tastes as me & who has Sjogren's & Osteoarthritis, or just Sjogren's.
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E-Pal number 2008-121
Name: Jackie
Gender: female
Age: 45
Lives in: Arizona, USA
Years with : 5 years
About Me: I was diagnosed with Sjogren's about 5 years ago, as well as RA, fibromyalgia, Lupus. I would like to share my experience and treatments with someone else and would like to hear from others about their experience. I have great drs and have learned a lot. And if I could help someone else that would be great!

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E-Pal number 2008-120
Name: Margot
Gender: female
Age: 65
Lives in: Connecticut, USA
Years with : unknown
About Me: I have Fibromyalgia, Chronic Fatigue Syndrome, Post Traumatic Stress Syndrome, Coronary Artery Disease, and Acid Reflux. I saw my primary doc who sent me for an ultrasound. The diagnosis of which was enlarged parotid glands on both sides. My primary doctor referred me to an ears, nose & throat specialist who performed a lip biopsy & sent me for an MRI. The biopsy and MRI suggests Sjogren's Syndrome. I'm so tired, have joint pain and stomach upset. Can someone tell me what tests were performed, and if this syndrome has caused any other immune system illnesses? I would appreciate any information I can receive from those who suffer from this disease. Thank you.

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E-Pal number 2008-119
Name: Caitlin
Gender: female
Age: 17
Lives in: Massachusetts, USA
Years with : 5 years
About Me: I was diagnosed with Sjogren's Syndrome when I was about 13 years old. I am believed to be the only teenager with it all throughout New England. I have had so many struggles through out these past 5 years, I would like to be able to relate to someone who is about the same age as me.
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E-Pal number 2008-118
Name: Bonnie
Gender: female
Age: 66
Lives in: North Dakota, USA
Years with : 12 years
About Me: I am a grandmother and love to golf and quilt. I am dealing with arthritis, Sjogren's and dentures. Am looking for support on these conditions.
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E-Pal number 2008-117
Name: Kim
Gender: female
Age: 19
Lives in: Florida, USA
Years with : 2 months
About Me: I'm a sophomore in college and I would really like to get to know someone my age who is going through the same thing.
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E-Pal number 2008-116
Name: Maya
Gender: female
Age: 28
Lives in:
Years with : 1 year
About Me: Newly diagnosed and seeking anyone with more information and first hand experiences. I would deeply appreciate anything anyone has to offer in way of what I have described. Thank you in advance and I hope to hear from someone soon.
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E-Pal number 2008-115
Name: Irene
Gender: female
Age: 25
Lives in: USA
Years with : 3 months
About Me: I was diagnosed with Sjogrens in 07/08. I would like to just have someone to talk to who understands what i am going through and who we can share experiences with. I want to learn more about this and want to try to live the most normal life i can.
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E-Pal number 2008-113
Name: Hily
Gender: female
Age: 33
Lives in:
Years with : 6 months
About Me: I was diagnosed to have Sjogren's Syndrome in the April. I went to throught about 1 year. Now, I take Evox for my dry month. I am relief from the dry month. But I can not get relief about my dry eyes. any one has a good idea for the dry eyes relief to share. thank you very much.
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E-Pal number 2008-112
Name: Kala
Gender: female
Age: 41
Lives in: Wisconsin, USA
Years with : 1 year
About Me: It has been a year since I was diagnosed with Sjogren's. My story is probably not unique and many other's may have similar tales. I struggled for over a decade with a variety of symptoms, which were more or less brushed off by the doctors, or left unexplained. It was my dentist who finally gave me a clue and sent me to the right specialist. Recently they have added Rheumatoid arthritis to the growing list of diagnosis. It is good to have some answers, but difficult to face at my age. I would like to share my experience with someone and perhaps learn how they dealt with similar circumstances.
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E-Pal number 2008-111
Name: Jack
Gender: male
Age: 43
Lives in: Kentucky, USA
Years with : 15 years
About Me: Hello, I'm Jack a 43 year old who has been living with Sjögren's for 13 years. I am interested in music, outdoors, and my two great children ages 13 & 11. I am a stay at home dad for the last 10years. Hope to hear from other males with Sjogren's syndrome...Thank You and take care
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E-Pal number 2008-110
Name: Sally
Gender: female
Age: 36
Lives in: Illinois, USA
Years with : 3 months
About Me: I was just recently diagnosed with Sjogrens, Hashimoto's and Raynaud's. I have been on Plaquenil and Naprelan for 3 months and finally getting relief from years of pain. My 8 year old daughter has been having symptoms of an autoimmune disease since she was 5. She is ANA+ and borderline Sjogrens in April and we are waiting for results from recent blood work. She struggles everyday and it breaks my heart, because I know exactly what she's going through. Is there anyone who can relate to having Sjogrens and children with the disease as well?
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E-Pal number 2008-109
Name: Hortencia
Gender: female
Age: 51
Lives in: Texas, USA
Years with : 9 years
About Me: I am a 51 year old female that has had sjogren's for 9 years. It took 2 years for Drs. to finally diagnose me. I have been married for 15 years and have a 14 year old son. My husband does not fully understand my illness and what I am going thru. I would like to have a pen -pal so I can relate to someone else with my illness.
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E-Pal number 2008-108
Name: Gregory
Gender: male
Age: 15
Lives in: California, USA
Years with : 8 years
About Me: Sjogren's has a major impact on my life, and I missed 3rd through 8th grades of school. Now I'm beginning my sophmore year of high school, but my freshman year was REALLY hard because of my disease. I missed 74 days of school last year. There is no one my age I know who has my disease. It would be nice to know if there are others struggling like me.
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E-Pal number 2008-107
Name: Judy
Gender: female
Age: 6o
Lives in: NY, USA
Years with : 5 years
About Me: Married, three grown children. Work in outdoor/environmental education field. Looking for someone to chat with that has been experiencing symptoms of facial numbness/tingling.
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E-Pal number 2008-106
Name: Linda
Gender: female
Age: 65
Lives in: AZ, USA
Years with : 8+ years
About Me: I'm retired from the health care field after 21 years and live in the Southwestern United States with my husband. He's a wonderful and supportive man but is dealing with his own issue of visual loss due to advanced glaucoma. I was diagnosed with Sjogren's about 1 year ago though minor symptoms were present for many years. My current symptoms are dry eyes, mouth, aches and pains all over, peripheral neuropathy, decreased energy and fatigue, etc. These symptoms seem to be progressing slowly as time passes. I suspect most of you can relate here. I try to start every day with a positive attitude and believe a sense of humor is essential in life - especially in times of adversity. Once in awhile the Sjogren's gets on top of me, but not too often. I love to read, tackle minor household projects (when I feel up to it), walk my dog, share a swim with my husband, chat with dear friends (they all live in other states) and enjoy the beauty of nature. I would like to communicate with another person or persons who have Sjogren's so we can exchange feelings, ideas, treatment options, etc. It's good to know there are people out there who can empathize with us.
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E-Pal number 2008-105
Name: Linda
Gender: female
Age: 37
Lives in: New Mexico, USA
Years with : 1 year
About Me: I am a single mom of 2 teenagers (one just started college pre med) and very proud of both of them. I have had a lot of problems over the last year related to ss. I would like to talk to someone who understands. I love going to concerts-usually with my kids, movies, not much for outdoor stuff-too sun sensitive, travel.
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E-Pal number 2008-104
Name: Jeanne
Gender: female
Age: 41
Lives in: MI, USA
Years with : 13 years
About Me: Hi! I would like ever so much to find a friend with Sjogren's. Someone to connect with and share tips and tricks for living with this illness- both mentally and physically. Married for 14 years. My interests include cooking, gardening, reading and yoga. I am always looking for new ways to cope with Sjs and often combine conventional with alternative methods ( Taking Restasis, Lacriserts and fish oils have given me my "eyes" back!) Look forward to meeting you.
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E-Pal number 2008-103
Name: Barbara
Gender: female
Age: 34
Lives in: FL, USA
Years with : recently diagnosed
About Me: I am married with 2 kids. I love horses (I live on a horse farm), I also love scrapbooking. I am looking for someone who understands what I am going through. I am trying to be positive but yet trying to figure out this out. It has slowed me down (fatigue) and just looking for someway to get through this! Hope to find an e-pal! :)
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E-Pal number 2008-102
Name: Kellee
Gender: female
Age: 35
Lives in: NSW, Australia
Years with : 1 year diagnosed
About Me: Hi I am relatively new to serious Sjogren's happenings. I am currently dealing with all this and trying to work at the same time. I am looking for anyone to share this journey with as we all need each other. I am especially interested in corresponding with other dealing with Sjogren's while maintaining a career.

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E-Pal number 2008-101
Name: Les
Gender: male
Age: 44
Lives in: TX, USA
Years with : 1 year
About Me: I was diagnosed using a blood test, in July. I have had symptoms severely since April. I have dry eyes, mouth and very sore muscles. I am 44yo male in TX. I would like a e-pal my age or younger, who may have been recently diagnosed too.
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E-Pal number 2008-100
Name: Annette
Gender: female
Age: 44
Lives in: Scotland UK
Years with : 13 years
About Me: I have had Sjogren's syndrome for 13 yrs, now I also have Rheumatoid Arthritis and Lupus. I am Married with a family who are all very supportive, but would like someone to talk to that can relate to how I feel at times.
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E-Pal number 2008-099
Name: Linda
Gender: female
Age: 57
Lives in: Arkansas, USA
Years with : 7 years
About Me: hi, my name is Linda, I am married to a great guy that is understanding more about this every day. I have Lupus , Raynaud's, and vasculis that is spelled wrong probley. worked all my life seems like but had to retire on disability in 2007.i am taking a lot of meds. but the one that saved me was plaugnil,it was a wonder drug for me .I have had scarring on my lungs just got over pneumonia. i am a Christian and believe in healing ,so i don't let it get me down for long . figure if I am not healed here I will be when I get there god bless you all
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E-Pal number 2008-098
Name: Sherri
Gender: female
Age: 53
Lives in: USA
Years with : 20+
About Me: I have had Sjogren's for all of my adult life. I suffer its affects daily. I have other autoimmune issues and don't really know which is related to what. I move a lot and have never had a doctor who explained exactly how many symptoms are Sjogren's related. I'm going through a rough time and would love to have a pal who knows what I'm going through. So many don't even know what I'm talking about, including some medical professionals. Misery Loves Company. I definitely need some company. What a great sight to offer to us PWC's. Thanks, Sherri
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E-Pal number 2008-097
Name: Natalie
Gender: female
Age: 37
Lives in: Australia NSW
Years with : 1 week
About Me: Hi, my name is Natalie, I am 37. Live in Sydney, Australia with husband and 2 boys. I am an architect and interior designer. I've have had symptoms for about 3 years. My doctor kept on saying nothing is wrong with me and I was becoming a hypochondriac after going to her each fortnight with a different ailment, even suggesting I see a shrink. It was me who discovered what I had over the internet and organized an appointment with an immunologist/neurologist. I have peridontitis, peripheral neuropathy, nail ridges, high blood pressure, muscle spasms, dry eyes, fluid in middle ear, dry eyes, dry skin, major hair loss, rashes, severe allergic reactions, fevers and chills, panic attacks. What is weird I ran the gold coast marathon 4 weeks ago ( but had chills during the event), 2 weeks ago did bloods for immune system which was all over shop, have a MRI on this sat and will be told what drugs I have to take next Tuesday by the professor. I am so glad I found this website with other people in the same situation, as the last 6 days I thought I was going to die from this. I now know there is other people in the world in the same situation. And I am truly thinking of you all.
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E-Pal number 2008-096
Name: Becky
Gender: female
Age: 35
Lives in: Idaho, USA
Years with : less than 1 year
About Me: I have only recently been diagnosed and am feeling very overwhelmed and frustrated. I am young to have the syndrome and am having a hard time dealing with the fact that this is something I will have live with for the rest of my life. I am also having a hard time finding medicines that I can take because of the side effects. I am looking for someone who has had experience with the syndrome and that I can talk to. My husband is also having a problem dealing with me being sick. We could both use some help! Thank you!
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E-Pal number 2008-095
Name: Leticia
Gender: female
Age: 48
Lives in: Texas, USA
Years with Sjogren's: 14 years
About Me: A shoulder to lean on and share various symptoms and medication regimen. I am really feeling down right now. I am a mother of a wonderful 27 year old son, have a supporting family, and partner...but I don't think they Really get it you know?

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E-Pal number 2008-094
Name: Elna
Gender: female
Age: 75
Lives in: Iowa, USA
Years with Sjogren's: 1 &1/2
About Me: I am a christian. I love nature & country. I like to decorate & organize. I would love to have an e-pal with both Sjogrens & Lymphoma which I have. I had my parotid gland removed which had the Lymphoma in it. My greatest struggle from day to day is my dry eyes & dry mouth. God Bless you for this web

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E-Pal number 2008-093
Name: Rick
Gender: male
Age: 52
Lives in: Wisconsin, USA
Years with Sjogren's: 8+
About Me: Fun stuff first. Love to cook, write, shop, photography, and make movies. Good sense of humor. Currently, disability rights advocate. Married, 5 children, 3 through special needs adoptions. 1 granddaughter.
Diagnosed with Sjogrens and peripheral neuopathy June 2008. Symptoms 8+ years. On Plaquenil and Neuronton. Waiting for relief. Good listener. Looking for friends male or female to talk about dealing with Sjogrens, decisions about working, family relationships, changing your lifestyle, and how to have a “life” with Sjogrens

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E-Pal number 2008-092
Name: Delilah
Gender: female
Age: 37
Lives in: Ohio, USA
Years with Sjogren's: 2 months
About Me: Hello, I am a married mother of one who works full time. I was recently told I have "probably" sjogrens. I have dry eyes (extremely positive shirmers test), dry mouth, dry skin, joint and muscle pain, fatigue and digestive issues. My doctor ran blood tests but they were all within normal ranges. The rheumatologist said even though the tests came back negative I still need to be treated for the symptoms and she will continue to test and monitor me every six months. I would like to talk with someone with similar issues concerning both life and disease.

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E-Pal number 2008-091
Name: Robyn
Gender: female
Age: 51
Lives in: Nevada, USA
Years with Sjogren's: 29
About Me: I am 51, divorced, with 2 sons (20,22). I was diagnosed with arthritis when I was 22. At the time, they told me it was lupus. A few years back, they changed the diagnosis to sjogrens syndrome. I am currently taking plaquenil which seems to be working fairly well.

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E-Pal number 2008-090
Name: Wendy
Gender: female
Age: 45
Lives in: UK, Merseyside
Years with Sjogren's: 2
About Me: Hi I'm married with 1 grown daughter and 1 new grand daughter.  Work part-time as a receptionist, enjoy theatre, cinema, eating out and family history. Love to share the fun and good times with someone as well as helping each other on the bad days, I'm a good listener and try to find the positives in life. DXd 2007, but probably had for many years

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E-Pal number 2008-089
Name: Heather
Gender: female
Age: 42
Lives in: California, USA
Years with Sjogren's: 14
About Me: I was diagnosed in 1994 after the birth of my first son: chronic fatigue, memory loss, dropping things, hurting all over. I now have 2 boys and am divorced. Six years ago I was also diagnosed with Diabetes Type 1. This disease is like a roller coaster - up/down, good/bad. I have lost all my bottom teeth and wear a denture. Have RA which inflames at worst times. I am currently suffering from a continual issue with Hives (4 months now). Anyone else suffering from a condition that "turns on" and won't "turn off"? About to start Beta Blockers...

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E-Pal number 2008-088
Name: Lindsay
Gender: female
Age: 26
Lives in: Pennsylvania, USA
Years with Sjogren's: 3
About Me: I was diagnosed with Sjogren's after 5 years + of symptoms. I am still experiencing new symptoms and trying to find the right medications/therapies to help get through day by day. I work full-time, recently married and have an 8 year old stepson. I would like to have children, but know that I am at greater risk due to the positive blood markers. I would like an E-Pal of similar age/situation for general support and to share similar experiences.
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E-Pal number 2008-087
Name: Kim
Gender: female
Age: 51
Lives in: Tevose, Pennsylvania, USA
Years with Sjogren's: pending diagnosis
About Me: I am happily married with 3 grown sons and 5 beautiful grandchildren. I was very active; grandchildren, traveled, skied, hiked, fished with my family. I have been sick for 6 years and about 20 doctors latter. I began with severe headaches, fatigue, brain fog, very bad, and frequent menstruation. Thought it was my uterus - so they took that out - it was diseased, but I continued to get sicker and sicker. Saw so many specialists, some blew me off as a nut. Feb 2006 developed a severe rash- Biopsy was positive for Lupus - Diagnosed with SLE not systemic- Blood work looked great! Started to see a Rheumy in OCT-2006 said I had Fibro or CTD. Fired him in April 08 when I found out I had a SEVERE Vitamin D deficiency- that he missed for 2 years. Have a new Doc that did many tests and a lip biopsy waiting for results tomorrow I am convinced I have sjogrens-My Blood work is always ok except sometimes elevated sed rate. My current symptoms are dry eyes, swollen glands in neck, headaches, fatigue, ulcers in my mouth, throat, nose, PAIN every where, but neck, mid and lower back, ribs are killing me. I take too many meds to list and have been on Steroids for 18 months. They have begun to wean me off which is causing me to feel worse. If that is possible. I would like to talk to someone that can relate. My family is supportive, but they could never get how bad this can be at times. I feel like I am whining! I am working full time, but will not be able to work much longer. I cannot keep this up and I have developed some cognitive issues recently. Hanging in there.
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E-Pal number 2008-086
Name: Linda
Gender: female
Age: 56
Lives in: Texas, USA
Years with Sjogren's: 25
About Me: Hi. I am a mother of 4 grown sons, 17 grandchildren. I am happily married. I was recently diagnosed with Sjogren's but have gone to MANY doctors over the last 25 years to try to find out what was wrong. I literally thought I was going to die before I could find answers. I'd be happy to just chat with someone else with this experience!
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E-Pal number 2008-085
Name: Shanon
Gender: female
Age: 39
Lives in: not specified
Years with Sjogren's: less than one
About Me: Just looking for someone that can understand what I am going through. I have very supportive family, right now, I need someone that understands.
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E-Pal number 2008-084
Name: Stephanie
Gender: female
Age: 44
Lives in: Dallas, Texas, USA
Years with Sjogren's: 3 1/2
About Me: Hello. I wanted to ask some questions about Sjogren's. Specifically, the name of a great rheumatologist in the Dallas area familiar with this syndrome. My experience has been that rheumatologist do a great job of diagnosing the problem but not so much with re: to treatment. Any ideas???
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E-Pal number 2008-083
Name: Stephanie
Gender: female
Age: 31
Lives in: not entered
Years with Sjogren's: not yet diagnosed
About Me: I am 31 years old, married and a mother of four. I have not been officially diagnosed yet. I am looking for someone that has knowledge on Sjogrens and could give me advice. I have have two positive ANA and SS-a positive tests. Dr's do not think Sjogrens but I do. I do not have classic Sjogrens symptoms like dryness but extreme muscle burning and pain. I would love to learn more and make friends in the process.
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E-Pal number 2008-082
Name: Debbie
Gender: female
Age: 48
Lives in: New Jersey, USA
Years with Sjogren's: 2+
About Me: Hi, Was diagnosed with SJS about 2 years ago after being evaluated for MS. Had small white lesions on MRI, abnormal nerve conduction of arms and legs, extreme fatigue and body aches, and heat intolerance. Although my blood work was negative for SJS, other red flags were present and I was diagnosed on my symptoms by a rheumatologist. I also have fibromyalgia (15 years), polyarthritis, osteoarthritis, GERD, dry eyes and mouth, terrible joint and rib pain, brain fog, etc. My lip biopsy was equivicol, but my Schirmer's test and Rose Bengal staining were positive.
I have been married to my best friend and soul mate for 26 years and have 3 grown daughters (23, 21 and 20). All are very supportive and help me out alot. I do what I can when I can. Some days are better than others. I had to quit my job as it involved too much computer work and my eyes and my hands couldn't take it. I love to listen to audio books (since I have blurry vision due to the dryness), sew, collect recipes, bake and cook, and be with my dog Bowser (schnoodle). I try to remain positive from day to day and take things one day at a time. When I can get out of bed, then it's a good day! I would love to chat with someone who understands (as many family/friends don't). If you're interested -- e-mail me!
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E-Pal number 2008-081
Name: Julie
Gender: female
Age: 31
Lives in: CA, USA
Years with Sjogren's: 2
About Me: Hello, My name is Julie. I was diagnosed with sjogrens 2 years ago. I have dry, eyes, dry mouth and some joint pain. Sometimes I feel like I was dragged and hurt all over. I take plaquenil and feel that it works well. I don't talk to anyone about this, I try to hide the pain and put up a Smile thinking that if I don't pay attention to it, it will go away. I have two children 8 and 11, and a wonderful husband that takes care of me and has helped me get through these difficult times of having a disease. What am I to expect in the years to come? I need sjogrens friends to share my questions and answers.

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E-Pal number 2008-080
Name: Michelle
Gender: female
Age: 49
Lives in: Michigan, USA
Years with Sjogren's: 13+
About Me: Hi, my name is Michelle, and I would love to chat with someone who is dealing with the everyday trials of Sjogrens. Each day certainly isn't easy, but I try to find my happiness in my garden and my crafts which include scrapbooking and card making. I also enjoy reading, but have a little trouble with that because of some cognitive troubles, but I keep trying! I will be married 29 years this September. Not able to have kids, but have a wonderful cat named Rascal.

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E-Pal number 2008-079
Name: Gillian
Gender: female
Age: 39
Lives in: UK
Years with Sjogren's: 8+
About Me: I am a mother of 2 children. I don't work, but I am re-training. Looking to correspond with other Sjogrens sufferers to provide support etc. I support two other family members with Sjogrens'.
I have experienced job issues, doctor issues, money issues and ideally would like to hear from anyone who is interested in religious practice or alternative therapies.
My hobbies are: trying to make the most of my life, voluntary work, reading, camping

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E-Pal number 2008-078
Name: Michelle
Gender: female
Age: 53
Lives in: Missouri, USA
Years with Sjogren's: 1 year
About Me: I feel like a whiner...I know my family gets tired of me complaining...since my problem isn't noticeable to the outside world...I have Sjogren's and Psoriatic Arthritis ..At one time I was diagnosed with Chronic Fatigue and Fibromyalgia...but since these last symptoms came up...I don't know if those still pertain to my condition. My biggest problem is with the dry eyes and mouth and sore neck and glands. I have been happily married for 27 years to a wonderful man....we have 5 kids and 9 grandkids. I drive a school bus and sometimes the fatigue is just to much...so I take medication to help me stay alert....it helps a lot. I would like to talk to anyone who is in the same position as I am...thanks.

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E-Pal number 2008-077
Name: Anne
Gender: female
Age: 50
Lives in: Ohio, USA
Years with Sjogren's: 6 months
About Me: I just got diagnosed with Sjogren's last week. I've had the symptoms for about 6 months. I fortunately only suffer from the dry mouth, dry eyes right now and pray it doesn't progress. I also have IC. I firmly believe that most of my problems are hormone related somehow. I feel like I've gone downhill since my hysterectomy.
I have two grown daughters not living with us anymore. I've been married for 29 years to my best friend. I love dogs, birds, gardening, reading and I am also an unsuccessful writer but can't seem to stop myself.


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E-Pal number 2008-075
Name: Karla
Gender: female
Age: 35
Lives in: SD, USA
Years with Sjogren's: 3 years
About Me: Hi, I'm a mother of 4 children; 12, 10, 7, & 3. I have only known that I have Sjogren's for a little over 3 years. I'm sure that I have had it longer, but didn't know it. I also work full time with my husband. I'm looking for someone that can understand the total package of Sjogren's, since I don't have anyone here that has ever dealt with it.

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E-Pal number 2008-074
Name: Elizabeth
Gender: female
Age: 55
Lives in: Illinois, USA
Years with Sjogren's: newly diagnosed
About Me: Newly diagnosed. Married with 3 children and 1 granddaughter. Last child will be off to college. Lost my brother and 2 Aunts this year. Moving in with my Dad to care for him. Hubby is disabled with bipolar. Lots of emotional stuff to deal with on top of Sjogrens. Happily been maternity nurse 30 years. Love arts and crafts- learning stained glass. Just want someone to talk with about Sjogrens. Don't want to burn out my family

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E-Pal number 2008-073
Name: Ashley
Gender: female
Age: 25
Lives in: Pennsylvania, USA
Years with Sjogren's: unknown
About Me: Hi, I was just diagnosed with Sjogren's Syndrome a few months ago. I have had some symptoms for years, more noticeable ones for the past 2 years, after I had my son.
I want to know more about this disorder and how those who have it deal with the symptoms. Especially those who also are young, and those with young children.

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E-Pal number 2008-072
Name: Debbie
Gender: female
Age: 53
Lives in: the weeds of Oregon, USA
Years with Sjogren's: 1 week
About Me: like most I think I have had this for many years. the dry eyes, mouth, I thought there was something wrong with my tongue. the pain in my joints thought it was working to hard on my farm. so many docs , then I found and older doc that put all the symptoms into 1 pot and he told me it is sjogrens. have had 2 of test positive both. need some advice. my other job is driving special needs kids. having trouble with fatigue and brain fog. don't know what to do.

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E-Pal number 2008-070
Name: Kelly
Gender: female
Age: 22
Lives in: UK
Years with Sjogren's: 12 years
About Me: Hi I'm Kelly, and I have had sjogrens for 12 years. Was diagnosed when I was 10 so obviously too young to really understand what was going on in my body, apart from the fact that I was ill. The condition is now progressing and am struggling to deal with this on my own. Would love to chat with someone that understands how Sjogrens works
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E-Pal number 2008-069
Name: Leslie
Gender: female
Age: 56
Lives in: Washington, USA
Years with Sjogren's: 3 ?
About Me: Newly diagnosed. Looking for others to talk to about how they live with this syndrome, i.e. what does it look like day to day ..... Get up in the morning, peel your eyelids open with a hot washcloth...do you have periodic exacerbations... will I always have Lacrilube smeared all over my face??? I have a great sense of humor about this so hopefully there is someone out there who has been able to keep the humor up.

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E-Pal number 2008-068
Name: Angela
Gender: female
Age: 28
Lives in: Oregon, USA
Years with Sjogren's: 3 years
About Me: As everyone else here I have been through tests and more tests. About 3 years ago I had Mono and the tired sick feeling never went away. I was recently diagnosed but have had it for 3 years or more. I am a graphic designer at a dental manufacturing company and I enjoy my work. However sometimes it's hard to get up and go. I struggle with finding the energy to do daily activities often. I would love to get married and have a child but am worried I would not be able to take care of it. Does anyone else feel this way? I would love to chat with someone around my age fighting the same life battle.

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E-Pal number 2008-067
Name: Melissa
Gender: female
Age: 54
Lives in: Alabama, USA
Years with Sjogren's: Many
About Me: I was diagnosed with SS almost 2 years ago. I retired early from teaching middle school due to the extreme fatigue and brain fog. I found I could not work out many math problems for my students. I now teach 12 hours a week at a local college-married 32 years -2 children-1 grand-daughter. I had mono at age five and again about age 35. Since mono is glandular fever, I often wonder if this was the start of my problems. At age 14, I had 12 cavities at one time. I have always experienced dryness but really never paid it much attention. Diagnosed with hypothyroidism 15 years ago - have had numerous bouts of bronchitis and pneumonia-continue to have a dry cough most of the time-recently experiencing heartburn which lasts all day-joint and muscle pain seems to be progressing-my eyes stay red and feel gritty-meds are plaquenil, synthyroid, prilosec, cymbalta, clonidine and zocor-would love to share sjogrens' stories

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E-Pal number 2008-066
Name: Rachel
Gender: female
Age: 38
Lives in: NC, USA
Years with Sjogren's: 3 years
About Me: I am a Mom to 4 children ages 12, 8, 4 & 10 months. I enjoy reading, photography, and hanging out with friends. I am looking for someone who understands the frustrations of raising a young family while dealing w/this disease and the maze of medications and treatments and side effects that come with it all.

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E-Pal number 2008-065
Name: Sharon
Gender: female
Age: 52
Lives in: Tennessee, USA
Years with Sjogren's: 1 year
About Me: I am 52 years old. I have two grown daughters. I am married.
I have been married to the same man for 30 years. He has been very understanding during the hunting for answers. Just need to know does anyone have pain and if so. Where. I am having lots of pain in my ribs "squeezing" and my shoulders are on fire. Please talk to me. P.S. What meds are you on?
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E-Pal number 2008-064
Name: Paula
Gender: female
Age: 50
Lives in: Pennsylvania, USA
Years with Sjogren's: newly diagnosed
About Me: Hi, my name is Paula. I have just finally figured out what is wrong with me after about 40+ doctors' appointments in the last 8 months. I keep falling down and am so very tired. My dogs keep on begging to go go go and I feel like I let them down. My friends and family think I'm feeling sorry for myself. But I did find a young neurologist that is helping me. It would be nice to talk with someone who has an understanding of this crazy muscle pain. Thanx! Paula
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E-Pal number 2008-063
Name: Angie
Gender: female
Age: 32
Lives in: Plainfield, IN
Years with Sjogren's: 3 years
About Me: I am here to try to help my grandmother who is 85 years old. My parents and her currently live in Sarasota, FL. They can't seem to find a doctor that can help my grandmother with the pain that she is experiencing, so we are trying to find a doctor in Indianapolis, IN that can help her. If anyone has recommendations please let me know. I would greatly appreciate it!
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E-Pal number 2008-061
Name: LiliAnn
Gender: female
Age: 33
Lives in: Nevada, USA
Years with Sjogren's: 2 years
About Me: I've had SS for 2 years.. but just now got given a more firm diagnosis.. my diagnosis has continually gone back and forth from RA to Lupus to SS. and back. its been stressful. i think i could deal easier if i just knew for sure what i am fighting. I do have alot of worries but because i feel this need to protect my family i walk around with a "all is ok smile". would love to have others to chat with who understand and can help me to understand. be a friend and a someone to share all the negatives/positives. epals of any age is welcome

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E-Pal number 2008-060
Name: Fran
Gender: female
Age: 54
Lives in: Florida, USA
Years with Sjogren's: 4 months
About Me: I was recently diagnosed with both Lupus and Sjogrens Syndrome. I experience severe joint pain in addition to dryness of my mouth, eyes, etc. I also have Common Variable Immune Deficiency. Every time I go to the doctor, he tells me I have a different condition, sometimes it is primary sjogrens, others it is lupus. How can you tell the difference and is it really important to know which is primary?
Thanks!
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E-Pal number 2008-059
Name: Cindi
Gender: female
Age: 47
Lives in: Alabama, USA
Years with Sjogren's: 2 months
About Me: I have only recently been diagnosed with Sjogren's even though I have had the symptoms for years. I also have other autoimmune diseases (POTS and Raynaud's Syndrome), along with other health issues. I would like to correspond with others about this illness to help me better understand it and to compare "notes". I am being forced to retire this month due to my health, after 26 years of teaching and am worried about how I am going to handle it. I enjoy spending time with my 16 yr old daughter, 21 yr old son and hubby. Christian activities are a big part of my life.
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E-Pal number 2008-058
Name: Lori
Gender: female
Age: 43
Lives in: Orlando, FL
Years with Sjogren's: 6 years
About Me: I was diagnosed with SS 6 years ago but since then I think I am developing Lupus also. I am married and I never had children since I have endometriosis also but I have 3 golden retrievers that are my babies. I am looking to correspond with someone via email that has had SS affect other organs not just dry eyes and mouth. SS is affecting my job, not sure how much more I can work and would love to email with someone for support.
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E-Pal number 2008-057
Name: Christina
Gender: female
Age: 29
Lives in: PA, USA
Years with Sjogren's: newly diagnosed
About Me: After 4 years and 2 normal pregnancy I finally have an answer to my unusual low blood counts-primary sjogrens. I am fortunate to have 2 healthy children and a supportive husband who bring so much joy to my life. My symptoms are mild and if it wasn't for pregnancy blood work I wouldn't even know I had it. At my last dr. appointment he prescribed hydroxychoroquine and I am hesitate about taking it. I don't like to take medication-not even Tylenol for a headache. I am looking for someone who is close in age and possibly from central to share thoughts and share experiences especially regarding treatment and pregnancy.
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E-Pal number 2008-056
Name: Linda
Gender: female
Age: 59
Lives in: Ohio, USA
Years with Sjogren's: 1 year
About Me: I was diagnosed with SS 2 weeks ago, but like many of us, I have had SS for many years. Lived with joint pain, lung problems, insomnia, swollen glands, tendonitis, fatigue. My DO told me "just part of getting old". But just put me on Motrin, and sent me to Physical Therapy, which hurt more than helped. Recently went to Dr. with dry eyes, mouth, and extreme fatigue. My poor eyes looked like they were bleeding from the inside out. I was sent for blood work which proved I had SS. Doc is sending me to Rheumatologist in 2 weeks. I had a very active life before all of this. I ran my own business, loved gardening, painting miniatures, crafting, scrapbooking, reading, playing piano, and playing with my Grandchildren. I'm blessed to have a very understanding, husband, one very precious daughter, and 3 grandchildren, who are the joys of our lives. Would enjoy chatting with anyone that shares this illness, and can give some insight on ways to cope. Been trying to read & research this, but still somewhat scared of what's to come. God Bless!
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E-Pal number 2008-055
Name: Rosemary
Gender: female
Age: 50
Lives in: Wales
Years with Sjogren's: 2 years
About Me: Hello my name is Rosie, I am fifty years old and I live in a small town in Mid WalesI have finally had to give up work due to my Lupus and secondary Sjogren's I am bored!!!I am a single parent and have two boys living at home who are 12 and 14 my other three Children have flown the nest and are doing really well.
I would love to have an e mail pal to communicate with...any offers?
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E-Pal number 2008-054
Name: Linda
Gender: female
Age: 48
Lives in: Maine, USA
Years with Sjogren's: 11 years
About Me: I am a 48 year old lesbian with Sjogren's. I have had the disease for 11 years and am looking for other gay/lesbian people with Sjogren's. I know I can't be the only one out there!
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E-Pal number 2008-53
Name: Stella
Gender: female
Age: 50
Lives in: UK
Years with Sjogren's: 3 years
About Me: Hi I've been married for 27 years and have 3 grown up children 23, 21 & 19. My 2 eldest have now flown the nest and I'm left with youngest son and my lovely Black Lab who are my rocks. Had a normal life upto Dec 2004 when my life was turned upside down with by a major problems to my CNS.
Was diagnosed with SS while having tests to see if I have MS. With 3 years down the line I have MS, SS, Raynauds, possible lupus and many other problems. I try to keep positive and an enjoy life, and would like hear from other sufferers.
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E-Pal number 2008-52
Name: Steve
Gender: male
Age: 50
Lives in: USA
Years with Sjogren's: 1 year
About Me: I'm a 50 year old gay male that was diagnosed this year with Sjogrens, Celiac and Reactive Arthritis. Are there any other gay people with SJS out there that want to chat?
Steve
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E-Pal number 2008-51
Name: Jayme
Gender: female
Age: 49
Lives in: MS, USA
Years with Sjogren's: ? Birth
About Me: I am single, (my soul mate married someone else), I have 4 dogs ( I did not want to have children due to the many diseases I had been dx with and strong family hx and it was not recommended) but: pepper is 6, teddy is 4, tyler is 3 and killer (kk for short) is my baby 6months, all shitzu's. I was very athletic and energetic at one time now I just dream about doing all of the wonderful things I used to be able to do. I do love to swim, but have to swim at night due to light sensitivity, love to watch tv and movies and so do my pets, bike riding( with my pets). I have had to struggle w/ sjogrens and MCTD for many years and would enjoy sharing my experiences positive and negative, lend an ear and try to help others have happen to them what has happened to me. Email me if you want to share your ups and downs
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E-Pal number 2008-50
Name: Jan
Gender: female
Age: 53
Lives in: USA
Years with Sjogren's: 8 months
About Me: Hello. I was diagnosed with Lupus and SS 8 months ago. A double whammy. I can handle the fatigue, headaches, and the other icky things. I just can't handle the dry skin. And the peteki is another bothersome ordeal. I am a sun worshipper and now I've been told to stay out of the sun since I break out in nasty rashes. I am looking for others who are going through the same misery with whom to correspond. Look forward to hearing from you.
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E-Pal number 2008-049
Name: Jean
Gender: female
Age: 41
Lives in: Nebraska, USA
Years with Sjogren's: 10
About Me: I was diagnosed with SS about 3 years ago. I have struggled not only with the disease, but also finding the right Rheumatologist, and FMLA leave issues. Last Fall, I finally decided to get more information on SS. I attended my first Sjogren's Syndrome Foundation Patient's Seminar and found that many of the symptoms that I was experiencing were not in my head, but many others were experiencing the same thing. I am thankful for a strong support system with my family and my faith. They are helping me get through the tough times!
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E-Pal number 2008-048
Name: Susie
Gender: female
Age: 41
Lives in:  IL, USA
Years with Sjogren's: 4 months
About Me: Hi, I a married mother of three boys. We have pets--3 dogs and 3 cats. I am a glass artist: I fuse (melt) it, make glass beads with a torch, do stained glass, do mosaics. I also make jewelry. I am a stay at home mom. I'd like to connect with someone who understands Sjogren's.
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E-Pal number 2008-047
Name: Heather
Gender: female
Age: 44
Lives in: Wales, UK
Years with Sjogren's: 2 years
About Me: I am married, 2 kids, own business which is dying a slow death due to lack of input from sickly owner. Every day seems to present a new health challenge. Unlike most people I am not on any meds.
I mostly cope through diet, exercise, high pain threshold and a sunny disposition, but I am not the village idiot, I do get fed up with my health and the docs. If you would like to chat about SJS, Lupus, Angina or any health issue I will be glad to offer the understanding of a fellow sufferer.
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E-Pal number 2008-046
Name: Becca
Gender: female
Age: 45
Lives in: Nebraska, USA
Years with Sjogren's: 2 years
About Me: I am married and have 3 adult children. I have had a long and frustrating journey to my diagnosis. I also have MCTD. I am looking for an E-pal because I need someone to bounce symptoms off of, someone that understands me and my symptoms, struggles etc. Just looking for a Sjogren friend
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E-Pal number 2008-045
Name: Hartensia
Gender: female
Age: 46
Lives in: Texas, USA
Years with Sjogren's: 4 years
About Me: Hello my name is Hartensia and I live in Houston, Texas. Im a single mom of a 6 year old daughter. I found out I had SS in a visit to the doctor a few years back. I was told time and time again that the only thing that would happen was be the dry mouth and eyes (which I have, my tears hurt), but now I think it effects so much more. Just looking for someone that I can talk to that understands. Nice to meet you.<
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E-Pal number 2008-043
Name: Sandy
Gender: female
Age: 59
Lives in: 
Years with Sjogren's: 5 years
About Me: I am frustrated because I have so much I want to do and my body is not cooperating. My symptoms began when I was 20 with Raynaud's Syndrome and have progressed with hypothyroidism, dry eyes, mouth (causing major dental work), extreme fatigue, joint pain, tenderness of tissues and more- now I feel like a wimp for complaining. I would like someone to talk to who can empathize so I don't have to complain to family! I want to have fun!!!!!!!
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E-Pal number 2008-042
Name: Pacian
Gender: female
Age: 31
Lives in: Louisiana, USA
Years with Sjogren's: Unknown, just diagnosed
About Me: I am new to this diagnosis, but have a sneaky suspicion it has been lurking for a while. Looking for someone closer to my age or in LA who can share with me. i love music and teaching. I play violin, have a loving husband, 14 month old daughter, and a twin with no symptoms. Not miserable except that I have a tendency to overthink and over research. I am really good at scaring myself and want someone to temper this with reality.
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E-Pal number 2008-041
Name: Kathryn
Gender: female
Age: 24
Lives in: PA. USA
Years with Sjogren's: 1
About Me: I am handicapped, I live with my mom, dad still. I LLLLLLLLLLLOOOOOOOOOOOOOOVVVVVVEEEEEEEEEEEEEEEEEE to sing, LLLLLLLLLLLLLLLLLOOOOOOOOOOOOOOOOOVVVVVVVVVVVVVVVVEEEEEEEEEEEEEEEE to horseback ride too. I have Raynaud's, I think I have Sjogren's too but not sure so if there is ANYONE, ANYONE AT ALL out there that can tell me all of the symptoms please write to me thanks.

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E-Pal number 2008-040
Name: Michele
Gender: female
Age: 44
Lives in: Louisiana, USA
Years with Sjogren's: 2 ?
About Me: I have been suffering with symptoms for the last two years, however, have only recently been diagnosed with Sjogren's and RA. I have survived much, including Hurricane Katrina, but feel as though I might loose the fight against this one. I struggle most with the lifestyle adjustments I have had to make and the amount of medication I am on. While I am only 44, I am feeling very old (especially when shopping with my 70-year-old mother who walks beside the motorized cart I must use). I joke often about the disease processes, but am feeling lonely in my battle against the diseases. No support groups in my area. Just looking for someone who knows what I go through.

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E-Pal number 2008-038
Name: Kelly
Gender: female
Age: 60
Lives in: PA, USA
Years with Sjogren's: 4+ years
About Me: It took 5yrs and tons of Dr's to diagnosed me with Sjogrens. Main symptom was swollen parotid glands in my face. Would happen every few days and very painful. Had it under control for years with immunosuppressive meds until now. Now Dr. wants to put me on a cancer medication methotrexate and has serious side effects. Anyone with same symptoms please email and let me know your outcome

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E-Pal number 2008-037
Name: Kelcie
Gender: female
Age: 60
Lives in: Ohio, USA
Years with Sjogren's: 1 years
About Me: I was just diagnosed today. In reading about this syndrome it seems I have had it for years. I have had dry eye since childhood and was always thirsty. I have arthritis and had polio as a child. Also diagnosed with fibromyalgia. I have had a hip and knee replacement and spinal fusion. So pain is a part of my life already. I would like to have someone to talk to about what I learn and what they know already. The support of someone who knows how it feels is a good thing! Thanks.

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E-Pal number 2008-036
Name: Rashel
Gender: female
Age: 38
Lives in: Georgia, USA
Years with Sjogren's: 2 years
About Me: Married with 4-year-old twins, I was "diagnosed" about 2 years ago (blood tests inconclusive, but PCP, opthal and rheum agree there is something there).
At first I just noticed the dry mouth, dry eyes and fatigue. I say "just," but those symptoms sent me into a tailspin of depression. I thought I would never get my life back. However, I AM finally working my way back to the active, happy and engaging person I was a few yrs ago.

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E-Pal number 2008-035
Name: Amy
Gender: female
Age: 35
Lives in: Ontario, Canada
Years with Sjogren's: 6 years
About Me: I have been diagnosed with RA and Sjogrens and the Sjogrens has been my greatest struggle. Finding compassionate health care in this area has been difficult. I wish more people knew about this condition. I am looking for ideas on managing symptoms, especially fatigue! I wish for health and happiness to all those living with Sjogrens.

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E-Pal number 2008-034
Name: Linda
Gender: female
Age: 57
Lives in: USA
Years with Sjogren's: 8 years
About Me: I have been diagnosed with Sjogren's recently this year however, I have had symptoms for the past seven years. I am a Fibromyalgia patient as well (17) years. I create jewelry full time, and quilt part time. I am active but live with pain daily. I'm concerned because summer is extremely hard as I can't seem to handle the heat. I'm hoping someone has experience with this and might have suggestions. Thank you.
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E-Pal number 2008-033
Name: Janet
Gender: female
Age: 52
Lives in: USA
Years with Sjogren's: 1 year
About Me: HI, My name is Janet. I'm looking for new friends who also have Sjogrens. This is all new to me,and I would love to have someone to chat with about symptoms, meds, and what to expect.
I have 3 grown children, 7 Grandchildren. I enjoy animals. I am a Christian. Hope to talk to you soon.
Janet

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E-Pal number 2008-032
Name: Beverly
Gender: female
Age: 65
Lives in: Maryland, USA
Years with Sjogren's: 4 months
About Me: I am newly diagnosed with Sjogren's after having a very active life and few health problems. I am taking each day as it comes but find that each day is very different from the last. Experiencing joint pain & fatigue as main symptoms. Does Physical Therapy help? I am in a health care career still working part time. Interests include gardening, reading, putting together puzzles, & I'm very active in church activities. Hope to share thoughts and experiences with others.

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E-Pal number 2008-031
Name: Judy
Gender: female
Age: 52
Lives in: Washington, USA
Years with Sjogren's: 12 years ?
About Me: I was recently diagnosed 2 weeks ago. My biggest problem is lymph gland swelling and pain. Everything else is secondary to me. I am a Christian and teach quilting, when feeling well and I also sell quilts and dye fabrics. I would like to talk to someone with similar interests and symptoms. I have a great service dog and would like to talk to someone who also has one. I need ideas, too. Thanks!
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E-Pal number 2008-030
Name: Christine
Gender: female
Age: 35
Lives in: New Jersey, USA
Years with Sjogren's: 8 years
About Me: I do not have the normal symptoms of Sjogren's. I work on average 50 hours a week as a veterinary technician and keep busy. I was diagnosed with Myasthenia Gravis 15 years ago, Sjogren's in 2000, based on blood tests and Devic's Disease two and a half years ago. I have a very positive attitude and overcome everything that comes my way.
I am looking for a friend to talk to that understands why some days I just want to rest. I live alone with my dog and it is nice to have some friends who understand how you feel.

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E-Pal number 2008-029
Name: Joanne
Gender: female
Age: 32
Lives in: Australia
Years with Sjogren's: 5 years
About Me: Like most Sjogren's suffers, it probably took over 8 months to be properly diagnosed. During that time in my life I was unable to work and the pain I endured was horrendous.
Prior to my condition, I worked at a University full-time, taught dancing twice a week and competed at National level in kayak marathons. Having to give this all up was heart breaking and I’m sure there are many stories just like mine.
After 5 years I feel like I'm getting back on track, yes I do have my bad days. But I'm back to teaching dancing again. I work full-time too and go out for occasional paddle. I don’t have the energy like I use to and yeps I still have my bad days but I feel like I am now in control of my life. Yay!
My husband and I are thinking of having a child. I am wanting to speak to someone who has had children that can offer coping strategies or any advice would be grateful.
Also, if anyone out there wants to share stories or advice on keeping fit, please drop me a line.

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E-Pal number 2008-028
Name: Rebecca
Gender: female
Age: 55
Lives in: California, USA
Years with Sjogren's: 5 years
About Me: I have been sick most of my life with fatigue and getting sick often. Now I know I am not crazy and it isn't all in my head like my ex husband told me. I have been having weird symptoms lately that are causing me concern. I get agitated and experience anxiety and panic even....also worry about myself getting lymphoma.....reading about Sjogrens sometimes makes it worse! Would love to talk to someone about the worry and anxieties of Sjogrens.

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E-Pal number 2008-027
Name: Kira
Gender: female
Age: 52
Lives in: South Africa
Years with Sjogren's: 8 years
About Me: I enjoy making new friends- some interests are baking, cooking, art, books, exercise, movies, natural remedies. My children have been a wonderful support while learning to adjust & cope with the frustrations, weird symptoms, of life-altering secondary sjogrens. Cant tolerate loads of medications; use natural remedies wherever possible. Sahara Desert on my tongue. Only those who have Sjogrens can truly understand how we feel and I dont know anyone else who has this. It can be very lonely as other people think "you look very well". I want to hear from you-lets work through this together exchanging thoughts, sharing ideas, treatment, good and bad days.
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E-Pal number 2008-026
Name: Maya
Gender: male
Age: 28
Lives in: NC, USA
Years with Sjogren's: unknown
About Me: Other than handling my illness, I need to be professionally active. I will just be starting a career and need to financially support myself. But the journey is tough. What I am looking for is a friend with whom I can not only talk about our illness but more importantly also talk about how we can cope up with this illness and how we can live life as normally as possible. I'm looking for a pal of my age, and ideally who is pursuing an active professional life.

I'm a positive person and have a very good aptitude when to comes to empathizing with people and helping them through the difficult times
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E-Pal number 2008-025
Name: Tracy
Gender: female
Age: 39
Lives in: Ohio, USA
Years with Sjogren's: 2 years
About Me: I really still am trying to learn more, as my symptoms and PAIN are getting progressively worse, some days I think I am going to die in pain. My GP does not know anything about Sjogrens and my rheum isn't real educated in it. I am from a small town and getting no where, I have 3 children 17, 12,and 4..I need someone to talk to...
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E-Pal number 2008-024
Name: Kim
Gender: female
Age: 29
Lives in: Maryland, USA
Years with Sjogren's: 5+
About Me: I have been living with Sjogrens for over 5 years. I am recently married and just moved to Maryland. So, I don't really have a support system for this. I just thought it was dry mouth and dry eyes, but it seems that there is more. I am looking for support from people who understand.

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E-Pal number 2008-023
Name: Pat
Gender: female
Age: 58
Lives in: Mississippi, USA
Years with Sjogren's: 2 1/2
About Me: Hello, I have had an "auto immune disease" for 14 years. Just 2 1/2 years been diagnosed with Sjogrens and Fibromyalgia. I still work although there's days I wish I didn't. I have had more than a few things going on. My main complaint is the fatigue especially when I have a flare. Would love to hear from you and thing s you find that helps.
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E-Pal number 2008-022
Name: Mike
Gender: male
Age: 60
Lives in: England
Years with Sjogren's: 10
About Me: Hi my name is Mike, a motor racing fanatic. I work as a Stores manager purchasing food and beverages for a hotel which is also a conference centre and sports club. After a number of years of various health problems, just 2 days ago I was diagnosed with sjogrens and am in a daze, sat there doctor talking to me and couldn't really take it all in.
Have been married to my dear wife coming up to 38 years, 2 children and 2 grandchildren, love them all so much. Would really appreciate talking to anyone about this syndrome so I can get a grip of my illness

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E-Pal number 2008-020
Name: Lauren
Gender: female
Age: 24
Lives in: California, USA
Years with Sjogren's: 7 years (but have had symptoms my whole life)
About Me: I was diagnosed with Sjogren's about 2 years ago, but I've been really sick for the past 8 years. My Sjogren's is complicated with CNS involvement, peripheral neuropathy, Autoimmune Pancreatitis, Autoimmune Hepatitis, Hashimoto's Thyrioditis, Fibromyalgia, and severe arthritis that currently has me in a wheelchair. I've spent a lot of time in and out of the hospital. I live my my mom and my dog. I also have a full time caretaker who helps me with day to day things.
I love to read and am an aspiring novelist. I'm a film buff and was attending film school before I got sick. I am also a huge computer nerd and spend my free time doing game design and building websites and social networks. I am addicted to scrapbooking and all forms of arts and crafts.
I'm looking for someone to talk to and form a supportive relationship with so neither of us has to go it alone :o)
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E-Pal number 2008-019
Name: Paula
Gender: female
Age: 47
Lives in: Nebraska, USA
Years with Sjogren's: Diagnosed 4 1/2 yrs. ago, though probably had longer
About Me: I suffer from joint pain, dry eyes, dry mouth, fatigue, brain-fog at times, and short term memory loss. I doctor with a wonderful rheumatologist and monitor symptoms regularly; I take several medications. I work at a high school as a paraeducator and part time at a public library...love both jobs. I am a misunderstood Pastor's wife and would love to talk to another Sjogren's patient...one who gets being "me". I love my family, reading, movies, and my chocolate lab.

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E-Pal number 2008-018
Name: Melanie
Gender: female
Age: 41
Lives in: UK
Years with Sjogren's: 1 Month
About Me: Hi, my name is Mel and I'm 41 years old, married with 1 daughter. I was only recently diagnosed with Sjogrens Syndrome and for 18 months now I have been suffering from thyroid, Raynaud's and painful joints, especially in my hands and fingers (rheumatoid arthritis), I also have swollen fingers and over the last couple of months have dry mouth. Would be great to speak with other people about this as lately I have started to feel quite alone with this condition. Look forward to talking to you and sharing thoughts and views.
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E-Pal number 2008-017

Name: Heather
Gender: female
Age: 37
Lives in: NC, USA
Years with Sjogren's: 20 years?
About Me: Believe that I have had Sjogren's since early teens when I ws diagnosed with dry eyes but am only now in progress of being diagnosed with SJS (Dr.'s appt late January 2008). I think I have been in denial a long time and fighting almost all the symptoms since college, particularly fatigue. 'Still manage to work full time as an underwriter at a small local bank and have good days and bad. Would like to talk with others with Sjogren's...

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E-Pal number 2008-016
Name: Karen
Gender: female
Age: 41
Lives in: Wales, UK
Years with Sjogren's: 2 years
About Me: I am a mother of two, a 15yr old son and a 8yr old daughter. I have suffered from the regular symptoms dry eyes, joint pains etc., I am no longer able to wear contact lenses which is a big thing for me as i don't feel comfortable in glasses, I have also suffered from lyphoid insterstatial pneumonia (please excuse spelling) for which I am taking steroids I had to have a lung biopsy to confirm this which was not very nice It would be interesting to know if anyone else has this and if they have been able to get rid of it and come off the steroids completely, I also get a lot of pins and needles in my arms and hands which can last for days on end, and although not really painful can be a problem when in work. Thanks again I was really pleased to find your website as I dont know anyone else with this condition and it does sometimes get me down when I am really tired and unable to talk to someone who would understand why just reading the comments on your site make me feel that I am not alone.

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E-Pal number 2008-015
Name: Nancy
Gender: female
Age: 52
Lives in: Yucca Valley , Ca
Years with Sjogren's: not sure
About Me: Hi, My name is Nancy , and I have just been diagnosed with Sjogren's , although the more I learn about it, the more I realize that I've had symptoms for years and years, just never got it put together until the dry eyes?mouth/nose hit recently. I am in shock , having been "supermom and "super Grandma" for years and suddenly finding it difficult to do anything , and a fearful bundle of nerves as I contemplate my future. I am a Christian and I am a full-time homemaker , married for 37 years . I have two daughters and 12 grandchildren, who are the lights of my life . Just want to chat with someone who can understand what's going on with my body and mind .
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E-Pal number 2008-014
Name: Karen
Gender: female
Age: 53
Lives in: Pennsylvania USA
Years with Sjogren's: 2 months
About Me: I was just diagnosed and have much to learn, I work in a hospital coffee shop as asst manager. I have 2 grown children and 6 grandchildren and a disabled husband, I am 53 years old and have many questions
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E-Pal number 2008-013
Name: Winston
Gender: male
Age: 20
Lives in: Pennsylvania USA
Years with Sjogren's: 1 year
About Me: Just diagnosed. My main symptoms are extreme fatigue, a dry mouth, and body aches and pains. I also suffer from bad allergies, I am not sure if this is related to Sjogrens Syndrome, but I have constant nasal congestion and a sore throat. I am a Junior in college and am just looking for some guidance to cope with my new diagnosis. Looking for information from people my age and others. Thanks

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E-Pal number 2008-012
Name: Linda
Gender: female
Age: 49
Lives in: Seminary, Mississippi
Years with Sjogren's: 2 weeks
About me: I AM A VERY ACTIVE CHRISTAN PERSON, OR USED TO BE ACTIVE!  HAVE BEEN MARRIED 32 YEARS AND HAVE A WONDERFUL 19 YEAR OLD SON I HAVE ALWAYS ENJOYED GARDENING, PAINTING, CRAFTS, FISHING WITH MY HUSBAND, NOW I JUST WANT TO STAY ON THE SOFA. I WORK AS A FLORAL DESIGNER PART TIME, AND LOVE MY JOB, BUT IT IS GETTING DIFFICULT BECAUSE OF HAND  ARM AND NECK PAIN. THEY THOUGHT I MIGHT HAVE LUPUS, BUT NOW MY DR. SAYS HE THINKS ITS SS. I HAVE ALL SYSTEMS OF SS AND LUPUS. JUST NEED TO TALK TO SOMEONE WHO HAS THE SAME AND ABOUT MY AGE.
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E-Pal number 2008-011
Name: Jayne
Gender: female
Age: 45
Lives in: UK
Years with Sjogren's: 2
About me: Hi, I was diagnosed with having Sjogrens 2 years ago but i'm sure i've had it much longer than that. I also have it secondary to Rhumatoid Arthritis, although I am thankfully not too troubled with that (at the moment). I am happily married and working full time and like to always have a sunny nature and I try to think positively and see the funny side of life. It would be just so lovely to chat to others in similar positions who understand what life is like living with Sjogrens.
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E-Pal number 2008-010
Name: Judy
Gender: female
Age: 44
Lives in: Colorado, USA
Years with Sjogren's: 8
About me: was diagnosed in 1999, fortunately living in Denver I was able to go to National Jewish. ( voted best respiratory hospital). I have a great rheumatologist and pulmonologist. I have SS and as a result my lungs have been inflamed. I have been on oxygen for 7 years. Soon I will have to go on the lung transplant list. I really don't want to. I have had all the usual symptoms (dry eyes & mouth, joint pain, fatigue, depression, memory loss) and have worked with alternative therapies to subdue them. Some have been successful, others not so much. I also have anemia, osteopenia, GI problems as a result. My biggest concern is with my lung situation. Would really like to talk to someone who has respiratory problems and someone who is using alternative therapies. I have had success with Chinese herbs, auriculotherapy, and acupuncture. I was a flight attendant for 14 years and have not worked since being diagnosed. So I do love traveling but it is getting harder to do, trying to do yoga again love reading and movies, and love watching my 2 children in sports (ages 10 and 13). Would love to hear from someone with similar problems. I also am a support member for Sjogren's foundation. I could possibly help with someone who needs some information?
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E-Pal number 2008-009
Name: Leanne
Gender: female
Age: 40
Lives in: Australia
Years with Sjogren's: 10 years
About me: I was diagnosed 10 years ago when pregnant with my first child. I now have 3 children (4) if you include my husband, 2 dogs and some fish. Was never given much information by my doctors nor given any medication for it, I also suffer with vasculitis.  Would love to hear from someone so we can share information, offer support and listen to each others concerns/worries etc.
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E-Pal number 2008-008
Name: Elsie
Gender: female
Age: 9
Lives in: United Kingdom, Nottingham
Years with Sjogren's: since I was eighteen months old
About me: Hiya everyone,
i have had sjogrens syndrome since i was eighteen months old. I have had it the most of my life. It started with big whit lumps at the back of my tabs. I then had to have an ear biopsy. Not long after i had to have a lung biopsy. Then i hade to have 2 canulas in my hand and 4 canulas in my legs and feet. When i had my lung biopsy i was put in a room for a few days then i went home. grandad was taking us home but he went the wrong way so it took us 3 hours to get home. When i got home i just layed on the sofa, feeling unwell. I then had bad sickness and diherreoa, i told dad i pooed my pants and he just sighed, put me in the bath, then took me to& bed. Then i went to the hospital and came back home for midnight. Then i had a stumble and sprained my leg so i couldn't walk for 2 months. i have only just started walking again now. I have to have an injection of methetrexete once weekly and methyl pred once a week too which is every friday. I have 40mg of prednisolone every day. i have ameprosol every morning witch is 20mg. i have been told that if i dont have this treatment, i will be in the wheelchair position all of my life. love from elisexxxxx
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E-Pal number 2008-007
Name: Magali
Gender: female
Age: 58
Lives in: Oregon, USA
Years with Sjogren's: 15
About me: I am 58 years old and has suffered from SS for the last fifteen years. I work full time and have a lot of energy. I ignored most of my symptoms (as much as I can!) I love life and try to live it to the fullest. My dentist of 38 years has just passed away and I feel lost. I am due to a new clean up and do not have a dentist. I would like to find a new dentist that has some experience with SS. Any suggestions are welcome.
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E-Pal number 2008-006
Name: Jessykara
Gender: female
Age: 30
Lives in: Massachusetts, USA
Years with Sjogren's: 15
About me: I am 30 years old, diagnosed at age 15, although have had symptoms since approximately age 12. I'm just recently starting to realize how much Sjogren's is affecting my life and looking to talk to others around my age.
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E-Pal number 2008-005
Name: Sarah
Gender: female
Age: 26
Lives in: Tennessee, USA
Years with Sjogren's: 2 months
About me: Hi I am newly DX. I am a mother of: 1 two year old boy, 1 five month old black lab rescue, 1 four year old Arabian gelding, 2 evil kitties, part mother to a broke to death mini paint pony and also a loving wife. My interests involve children, horses, cooking and making new friends. My best friend has been DX with Wegener's Disease (another auto immune) and together we are helping each other, but it is always nice to have some more friends to help through the difficult days.
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E-Pal number 2008-004
Name: Glenda
Gender: female
Age: 54
Lives in: Louisiana, USA
Years with Sjogren's: 3 months
About me: I am 54 years old with 1 child 31 and two grandson's age 8 and6. I've just been married for 4 years to my soul mate. Although we have been together for 8 years. I've just been diagnosed with Sjogren's and really didn't know much about it. I'm trying to do a lot of research but at the same time they don't tell you how fast this progresses. I know I can't do the things I use to do and I feel like I'm going down fast. I stay very very active. But the pain is very bad. I'm starting to get rashes, joint pain, dryness is really bad. I enjoy working, we are members of the amicus club which their soul purpose is to help St.Mary's training school that houses handicapped children. We are also members of the HOG'S (Harley owners group) and really enjoy riding motorcycles. I would just like to talk to someone that can tell me what they are going through and what I can expect as time goes by.
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E-Pal number 2008-003
Name: Tina
Gender: female
Age: 51
Lives in: USA
Years with Sjogren's: 6
About me: Hi, my name is Tina. I have just been told I have Sjogrens syndrome. I have felt very bad for a long time but played it off to age. I started by severe dry mouth with no way to make it feel better. I also have dry eyes. I ended up in the emergency room with pancreatitis. My body aches all the time. I have had thrush, and have had swollen lymph nodes. Constant uncomfortable sharp pains in stomach. Have lost 12 pounds since I first started feeling bad. I have a 2 year old and I can't believe I have to feel like this. Would like ideas on my eating the right foods and on how to help the severe dry mouth. Most of all some hope for the future. Thanks, Tina
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E-Pal number 2008-002
Name: Melissa
Gender: female
Age: 28
Lives in: California, USA
Years with Sjogren's: 6
About me: Hi, I've had Sjogren's for about 6 years, but I was only recently diagnosed with it (You know how that goes). I'd like another female near my age to talk to. I am recently married, hoping to have children soon, and I would like to talk to someone in the same boat. ~Melissa
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E-Pal number 2008-001
Name: Sheila
Gender: female
Age: 38
Lives in: Mississippi, USA
Years with Sjogren's: dx'd a year ago
About me: I'm looking for a compassionate, Christian e-pal. I was diagnosed about a year ago, but never could find much information, especially about the fever and depression. I'm going through a rough personal trial right now, and the depression is worse. I'm a nurse, generally kind-hearted, just hurting right now.
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E-Pal number 2007-157
Name: Kristin
Gender: female
Age: 32
Lives in:
Years with Sjogren's: 5 months
About me: I am a 32 year old female who works in the spa industry who enjoys yoga and living a healthy lifestyle. I am looking for someone in an e-pal who is young preferably around my age who has Sjogrens. I would like some who is optimistic and intelligent who knows how to deal with it. Someone who can support me that understands how devastating it is. That has experienced depression in relation to having been dealt with this and who has overcome it and is happy today. Who also has the patience to deal with someone who needs a lot of support and wont give up. Thanks.
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E-Pal number 2007-156
Name: Joyce
Gender: female
Age: 54
Lives in: Illinois, USA
Years with Sjogren's: 1 month
About me: Recently being diagnosed with Sjogren's I am excited to have e-pals to correspond with regarding this syndrome. I have worked in the healthcare field for over 30 years and as a Medical Staff Coordinator for the past 15 years. My interests are quilting, machine embroidery and reading.
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E-Pal number 2007-155
Name: Diane
Gender: female
Age: 66
Lives in: New Zealand
Years with Sjogren's: 10
About me: After ten years have just been diagnosed with Sjogrens. I am still very active but suffer a lot of pain at times. I still work 4 days a week , love the ballet opera and good movies. I have been on my own for 12 years I am saving up to but a camper van so I can see a bit if the country.
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E-Pal number 2007-154
Name: Flora
Gender: female
Age: 61
Lives in: Illinois, USA
Years with Sjogren's: not sure (at least 5)
About me: My doctor's and I are in the process of determining "if" I have Sjogren's Syndrome. I have had a cat scan and many blood tests. I am confused. One says no that maybe it is a neurological disorder. The other has me on Evoxac and Gabapentin saying it is probably Sjogren's. My symptoms are dry mouth, cotton mouth, EXTREME pain in my teeth (I have very good teeth and have always seen a dentist on a regular basis. So it is not my gums.) Hands VERY dry form the inside out (really weird). Fatigue. Confusion at times. I use saliva substitute and artificial tears. Does anyone out there have these symptoms??? Especially the painful teeth and dry hands????
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E-Pal number 2007-153
Name: Sharon
Gender: female
Age: 57
Lives in: Oklahoma, USA
Years with Sjogren's: 8 (approx.)
About me: I have just recently been diagnosed with Sjogren's; however have had the symptoms for about 8 years. I did not have a doctor who seemed to have an answer for me until this past year when I finally found a wonderful new doctor. She ran a series of tests & tests came back positive for Sjogrens.
I am a wife/mother/grandmother who works part time at a hospital. I enjoy life to the fullest. I am interested in hearing from an E-Pal who also suffers from Sjogren's so that we can share info.
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E-Pal number 2007-152
Name: Cynthia
Gender: female
Age: 50
Lives in: Louisiana, USA
Years with Sjogren's: newly diagnosed
About me: I've recently been diagnosed with SS after suffering with parotid swelling and infections for 6 months now, arthritis pain, severe fatigue, among other symptoms. I have gotten to the point of antibiotics and arthritis meds that just plain make me sick to my stomach. Would like to find someone who has experienced SS for several years who will help me to understand just what is ahead.
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E-Pal number 2007-150
Name: Mary
Gender: female
Age: 41
Lives in: Alabama, USA
Years with Sjogren's: newly diagnosed
About me: I have recently been diagnosed with Sjogren's Syndrome. I would like to find a pal to talk to that can understand what I am going through. My family and friends do not. I know that I'm not alone, but it sure feels that way sometimes.
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E-Pal number 2007-149
Name: Michelle
Gender: female
Age: 34
Lives in: Florida, USA
Years with Sjogren's: 11
About me: I have been living with Sjogrens for the past 11 years. I recently had a lip biopsy and should have the result within a few days. I face is swollen on the right side which started a month ago. I have been on two different antibiotics, steroids, and finally the lip biopsy. Until a month ago I was doing o.k. Now I don't know.
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E-Pal number 2007-148
Name: Marie
Gender: female
Age: 51
Lives in: New York, USA
Years with Sjogren's: 7
About me: I am married with three children. We have a dog and a cat. We live on a small, peaceful lake in upstate NY. I am a consultant for interactive gourmet cooking classes which I started doing in Aug 2007. I have other autoimmune illness, scleroderma, RA, lupus. For the first six years I was exhausted beyond imaginable. But I am sure anyone with our illness knows what I mean. This past year, I have started feeling better. However, I do have my days. My skin as softened as far as SD goes, but I have more outbreaks of eczema. I would love to have a friend that I can support and listen to and they could do the same for me.
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E-Pal number 2007-147
Name: Ashley
Gender: female
Age: 22
Lives in: Michigan, USA
Years with Sjogren's: 2-?
About me: I am a 22-yr. old college student at Michigan State University and just recently graduated this past Summer getting a B.S. in Psychology. In October I went to see a rheumatologist because I was having problems with extreme fatigue, muscle/joint pain. The blood test results show that I have SS-A/Ro antibodies. However, I don't feel like I have the typical symptoms of Sjogrens (no dry eyes or dry mouth), but I do have fatigue, dry skin/eczema. I currently live with my boyfriend of 2 years in an apartment and took this past semester off school to figure out what I want in life.
I would like to talk with other young people about their Sjogren's, especially since I don't seem to have many friends anymore and I feel bad constantly talking my boyfriends ear off! Looking forward to a reply!
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E-Pal number 2007-145
Name: Paige
Gender: female
Age: 37
Lives in: California, USA
Years with Sjogren's: 1-7+
About me: I finally got the lip, eye and blood tests that confirm I have Sjogren's - my pain started in my late twenties and dryness in year 2000. I feel very lonely and have a lot of bodily pain. My friends want to plan in advance and I always want to plan "last minute" if I feel good enough! Sharing health finds and laughs would be grand. I have a life partner for 7 years (he is great) and I have 3 children that are dachshunds (I guess having kids with Sjogren's can hurt the baby - I read). Health and happiness to you - in all the ways ya find it!
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E-Pal number 2007-145
Name: Paige
Gender: female
Age: 37
Lives in: California, USA
Years with Sjogren's: 1-7+
About me: I finally got the lip, eye and blood tests that confirm I have Sjogren's - my pain started in my late twenties and dryness in year 2000. I feel very lonely and have a lot of bodily pain. My friends want to plan in advance and I always want to plan "last minute" if I feel good enough! Sharing health finds and laughs would be grand. I have a life partner for 7 years (he is great) and I have 3 children that are dachshunds (I guess having kids with Sjogren's can hurt the baby - I read). Health and happiness to you - in all the ways ya find it!
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E-Pal number 2007-144
Name: Nancy
Gender: female
Age: 51
Lives in: Oklahoma, USA
Years with Sjogren's: 20
About me: I am a mom of four with only one teenager left in the nest. I work full time and enjoy reading, knitting and chick flicks. I had ITP in my early 20's (autoimmune blood disease) which tipped off the docs that I had autoimmune "issues". When I was 30, SjS was diagnosed (sort of) when they found the SS-A, SS-B antibodies. The real symptoms didn't start till my 40's. At that time, I had the "official" diagnosis via lip biopsy. My main symptoms are fatigue, fatigue, fatigue and dry mouth.
I would love to encourage someone newly diagnosed that it's not as scary as it sometimes seems. A pal near my age with a similar history would be great too.
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E-Pal number 2007-143
Name: Dee
Gender: female
Age: 40
Lives in: Texas, USA
Years with Sjogren's: 3
About me: I was diagnosed three years ago, but my doctor thinks I've had it for much longer and managed the symptoms until recently through exercise and lots of rest. After having my son five years ago, symptoms began with chronic fatigue, followed by migratory swelling, then progressed to joint pain, and its been downhill since--chest, back, joint, and muscle pain. Am trying to manage professional career and motherhood, but some days my greatest accomplishment is talking myself out of bed in the morning. Would like to give and receive encouragement from someone in similar circumstances.
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E-Pal number 2007-142
Name: Mia
Gender: female
Age: 53
Lives in: Washington
Years with Sjogren's: unknown
About me: I'm trying to remain optimistic and positive and am finding it to be pretty challenging. I enjoy being as active as I can and I'm learning/trying to find a balance between what my mind wants to do and what my body will allow me to.
I enjoy pottery, cooking, biking, sailing and walking my silly standard poodle. I have a supportive husband and son so I have much to be thankful for. It would be nice though to have someone to correspond with that is living their life with this too.
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E-Pal number 2007-141
Name: Theresa
Gender: female
Age: 38
Lives in: USA
Years with Sjogren's: 10+
About me: I am new to this Sjogren's World. I am not new to the Diagnosis of this illness. Some of my symptoms are dry eye ear pain, tinnitus, Dry sinuses, and dry skin, I have other issues as a result and it is also a secondary diagnosis for me too. I have other AI troubles too. I live to serve the Lord now and I work in a full time in a pharmacy that does nutritional supplements too... Brain Fog too.
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E-Pal number 2007-140
Name: Angela
Gender: female
Age: 35
Lives in: Canada
Years with Sjogren's: 1 month
About me: Hi everyone my name is Angela and I live in Saskatchewan Canada. I started to feel ill with joint pain etc in Dec 2006. Tested positive for ANA 1:2560 and anti-rnp. About one month ago I noticed the excessive dry mouth and itchy scratchy eyes. They tell me it is Sjogrens. Up until this point I was on Plaquenil since 03/07 and my joint pain is pretty controlled. I work full time as a accounting specialist in a job I love but have only had for 6 months. I am single with a new boyfriend. I love to travel and watch movies and read. I looking for anyone who would love to chat with me about this syndrome we all share. I am VERY scared I will not lie afraid of being alone I am an only child from a single parent family. I am very afraid of what the future might hold for me. I have read all the sites I can possibly Google and it sounds very scary. I hope to hear from someone soon. Thanks.
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E-Pal number 2007-139
Name: Gloria
Gender: female
Age: 57
Lives in: USA
Years with Sjogren's: newly diagnosed
About me: I've probably had SS for many years, only now diagnosed. My fatigue and dry everything I dismissed as being related to not having a thyroid due to cancer. April '07 I was hospitalized with dehydration from unknown virus that attacked me. Have had dry eyes, mouth, skin and abnormal looking tongue and back of throat feels like something is growing there, sore at times and hard to swallow. Would like to talk to anyone who has the same symptoms with their throat and get advise as to where to go to get help.
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E-Pal number 2007-138
Name: Maryanne
Gender: female
Age: 48
Lives in: New York, USA
Years with Sjogren's: About 3, I think
About me: Hi My name is Maryanne. I was told I might have Sjogrens. First they said I had MS. Then "Well we think it is Sjogrens". My ANA was very High. My symptoms have gotten worse and my Dr thinks it is definitely Sjogrens. I live on Long Island New York. I would Love to talk with other people in my area about this as I am Looking for a good Rheumy in the NY area.
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E-Pal number 2007-137
Name: Audrey
Gender: female
Age: 54
Lives in: Illinois, USA
Years with Sjogren's: just diagnosed 9-07
About me: My name is Audrey. I am 54 years old. My husband and I share our home with our dog Pickles we live in a suburb of Chicago, IL. I was diagnosed with Sjogren's, fibromyalgia and osteo-arthritis in September of 07. I'd love to have a e-pal that I could talk to learn about Sjogren's.
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E-Pal number 2007-136
Name: Kim
Gender: female
Age: 50
Lives in: Michigan, USA
Years with Sjogren's: 19
About me: I remember when I was first diagnosed with SS I was terrified at the time not much was known about it. Now much more is understood and when I go to a new doctor I don't always get the "what's that" look. I have four kids and 5 grandkids and worry that they will some day have to fight this stupid syndrome.
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E-Pal number 2007-135
Name: Frances
Gender: female
Age: 34
Lives in: Texas, USA
Years with Sjogren's: 3 weeks
About me: I am a mother of three, and was just recently told of my condition. I'm pretty scared, and would like to talk with someone who knows what I am going through. My husband is supportive , but we are both pretty much in the dark with all of this.
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E-Pal number 2007-134
Name: Rhonda
Gender: female
Age: 35
Lives in: Australia
Years with Sjogren's: 3
About me: I was diagnosed 3 years ago and all though my family is loving and supporting it would be nice to talk to someone who knows what I'm going through.
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E-Pal number 2007-133
Name: Courtney
Gender: female
Age: 22
Lives in: Missouri, USA
Years with Sjogren's: 2
About me: I am a college student, getting my BS in engineering. I was diagnosed with Sjogren's at age 19, during my freshman year here. I do have some oral and eye problems, but my main symptoms are fatigue and pain. I am in the process of making a lot of life decisions, and it's scary since I don't know what the future holds and I don't know how my disease will affect it. I am looking for anyone that's been in this similar situation or in general would like to talk about it. Thanks!
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E-Pal number 2007-132
Name: Maria
Gender: female
Age: 31
Lives in: Texas, USA
Years with Sjogren's: 1 week
About me: I would really like to find a friend. I was diagnosed with Sjogren's in October 2007. It would be nice to connect with someone who understands what I am going through. Support is very important, and I would like to offer mine to someone who needs it. Hope to hear from you soon!
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E-Pal number 2007-131
Name: Shirley
Gender: female
Age: 64
Lives in: Pennsylvania, USA
Years with Sjogren's: 10
About me: I'm looking for a friend that has Sjogren's. The doctor are not much help. I come from a small town. I just need someone to I hope you can help me.
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E-Pal number 2007-130
Name: Kim
Gender: female
Age: 46
Lives in: NSW, Australia
Years with Sjogren's: Many
About me: I think I may have had Sjogrens for maybe the past 5 years or even longer, most common in symptoms has been always being so tired. I have dry eyes, mouth, skin, some aches and pains. Got a diagnosis last month have never heard of it before that. I am a single mother and have one son living with me, he also has autoimmune disease which was only diagnosed last December... type 1 diabetic. He has Asberger's as well so I thought being tired was from my busy life with him. I am waiting to see a specialist and am really hoping he can help with the fatigue, I am finding that the hardest thing to cope with. I work 3 to 4 days a week so its hard to function some days. I don't mind who I talk to as long as they can give me some advice about this condition and maybe a bit of support. Thanks.
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E-Pal number 2007-129
Name: Linda
Gender: female
Age: 36
Lives in: New York, USA
Years with Sjogren's: 1
About me: I have been diagnosed with Sjogren's for about a year, but have had symptoms for years. I am a nurse and a mother of 2. I used to be a workaholic. Now I can only work 6 hours a day. I have terrible headaches, slurred speech, difficult time swallowing, generalized pain, facial drooping & swelling, numbness in extremities, slurred speech, mental fog, dry everything. I hope to hear from someone who knows what discomfort I have been going through. I like to walk, read romance novels and spend time with my children. I like movies. I love helping people.
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E-Pal number 2007-128
Name: Joy
Gender: female
Age: 72
Lives in: Georgia, USA
Years with Sjogren's: 7 since diagnosed
About me: Retired RN. Love to travel, read, music, esp. Chopin and Opera, gourmet cooking, grandchildren, and dogs. Not all necessarily in that order. Married for 47 yrs and he's still the best thing that ever happened to me. We have a son and two daughters. One daughter has MS, very sad. My faith in God is the most important thing in my life.
Looking for someone who also has a myriad of unusual symptoms and is not an advocate of prescribed drugs unless absolutely necessary. I am not " a handmaid of the physician". I say "no" to Drs more than I say "OK" especially when they want to "try" a procedure. I always ask, "How will this benefit my condition" and "What are the risks". Right now, I have "erysipelous" and am forced to take massive doses of "Augmentin" so I don't get carditis. What a pain!!!!! Have Scleral lenses, so don't suffer with dry eyes every moment. Still have very dry mouth. I'm upbeat most of the time, and would like to have a friend who is going through the stages of Sjogren's as it's so different for each person.
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E-Pal number 2007-127
Name: Beth
Gender: female
Age: 63
Lives in: Florida, USA
Years with Sjogren's: 5
About me: I've had Sjogren's for 5 years and was disabled by it. I now have 3 other autoimmune diseases with the Sjogren's. I'm frequently in pain and a Sjogren's brain fog, plus very low energy.
I'm married for 46 years and have one son. I love all animals, but have 2 indoor cats. One is a brat and gets the most attention. Be nice to have some Sjogren's friends.
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E-Pal number 2007-126
Name: Sue
Gender: female
Age: 62
Lives in: Georgia, USA
Years with Sjogren's: dx 2002, symptoms all my life
About me: Hi, My name is Sue, I'm a retired 62yr old, married and a mother of two grown children, no grandkids, but we have to fabulous cats.
I've had Sjogren's symptoms as far back as I can remember. Along with Sjogren's I have several other health conditions including fibro, Reynaud's, OA, hypothyroidism and a few more. I live with dry eyes, dry mouth, brain fog, fatigue, pain, neuropathy and the list goes on. However, I believe life is good and we must make the best of it. I try to keep an upbeat positive attitude, though I will admit its hard at times.
I'd like to give and receive caring, understanding support during the painful tearful times and enjoy the craziness and laughter during the good times. So, if you're my age, younger or older and you feel the same way, I'm here.
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E-Pal number 2007-125
Name: Linda
Gender: female
Age: 41
Lives in: South Africa
Years with Sjogren's: 1 month
About me: Am a single mom enjoying the heat and the vibrancy of living in Africa. Love reading and sport and now just reading about sport ! Very new to this game - was diagnosed with Secondary Sjogrens about 3 weeks ago. Was initially very impressed with the fancy martial arts sounding syndrome; am now less impressed after reading all the sad blogs related to this syndrome. My special flavour of SS is around connective tissue issues.
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E-Pal number 2007-124
Name: Tracy
Gender: female
Age: 47
Lives in: Pennsylvania, USA
Years with Sjogren's: 6
About me: I'm 47 yo and have been diagnosed with Sjs for 6 years, but have had it for much longer. I have 2 sons, ages 19 and 22, and have been married for 24 years. I love scrap booking and card making, reading, and needle crafts. I'd like someone to talk to more personally than I do on the list and to help support each other.
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E-Pal number 2007-123
Name: Erika
Gender: female
Age: 43
Lives in: Ontario, Canada
Years with Sjogren's: 1-3
About me: I am a mother of an 8-year old girl, and high school teacher currently on disability because of SJ's. Was diagnosed last year but have had symptoms for more than 10 years including extreme fatigue, migraines, achy muscles, dry everything except mouth. Am seeking positive penpals, with a sense of humour who can be a Sjogren's "sister". Talk soon!
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E-Pal number 2007-122
Name: Terri
Gender: female
Age: 41
Lives in: Illinois, USA
Years with Sjogren's: 9 months
About me: I am 41 yrs. old and married with 4 children(3 special needs). I'm looking for someone who would want to share sjs stories and be there for each other during good times and bad. I like reading, e-mailing, journaling, playing with my pets. I'm currently taking Arthritic swimming classes which is helping me twice a week. I would like to see what medications are working best for their sjs. I have Sjogrens B. My symptoms are dry eyes and mouth, RA, neuropathy of hands and feet, difficulty swallowing, fatigue, twitching of nerves in my body and muscles, brain fog at times, panic and anxiety. I think that's more then enough. I take Klonopin and Motrin. I pray I get e-pals to help get through these hard times with sjs and to help them also! I don't work due to 30 surgeries and now sjs which I have severe due to constant flare ups! I hope to hear from someone who would just like to e-mail and become friends. Terri
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E-Pal number 2007-121
Name: Natasha
Gender: female
Age: 31
Lives in: USA
Years with Sjogren's: 4 months
About me: I've just been diagnosed with Sjogrens due to my severe dry eye. At the moment am uncertain of what the future holds but as I'm 31 I'm looking to have another child in the very near future. I would be interested to hear from anyone who has been through a pregnancy or is looking to do so shortly. Generally I would just like to chat to someone who understands what I'm going through.
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E-Pal number 2007-120
Name: Ann Marie
Gender: female
Age: 54
Lives in: USA
Years with Sjogren's:
About me: I have yet to be diagnosed. I have a bizarre inflammation at the back of my throat. It is NOT a sore throat. The inflammation is so great that eating any food is painful; painful to swallow and also I have developed a hoarse voice. Anyone with some ideas???
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E-Pal number 2007-119
Name: Sara
Gender: female
Age: 49
Lives in: Arizona, USA
Years with Sjogren's: unknown
About me: I read though many stories on this sight and believe me, I can relate. I was recently diagnosed but my detective work indicates that this disease has been present in my life for many years. I finally reached a peak where I was unable to "bounce back." I have found the symptoms to be humiliating, identity threatening, and a constant, painful challenge. The person I used to be, meaning very active with great stamina is now gone. So, in case this is not temporary...
I am re-inventing myself within the unwelcome limitations of this disorder. I also have Reynaud's syndrome and have a history of UTI problems, dental hell, fatigue, extreme pain, frequent headaches and leg aches (walk like a duck some days). I am determined to continue exercising and refuse to give up the "good fight" even when it feels futile to remain active. Special interest in the connection with hormone imbalances to Sjogrens, those were formerly very active and making concessions, aware of a strong spirit, and continue to research and investigate the diagnosis/treatment of this and closely-related diseases/disorders. Keep on keepin' on.
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E-Pal number 2007-118
Name: Sharon
Gender: female
Age: 44
Lives in: Israel
Years with Sjogren's: 1
About me: I was recently diagnosed with SS - my doctor doesn't speak English so it was just 1 item in a long list. I looked up this strange sounding syndrome on the internet and lots of symptoms made sense. I would like an e-pal of any age ,with a sense of humour, to talk to. I also have RA ,OA and Reynaud's. Wondering if I can blame SS for my bad memory? lol.
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E-Pal number 2007-117
Name: Helen
Gender: female
Age: 35
Lives in: Florida, USA
Years with Sjogren's: 10
About me: Hi, I felt lousy 3 yrs ago but took till May of this year to get diagnosed. I had a baby 15 months ago and during the first few months of being pregnant I had tests done for fatigue and now I finally had insurance, that is how I found out. It took until May of this year to get me on medicine; Plaquenil and Salagen. I suffer from chronic fatigue and dry eyes but not dry mouth. I have no energy whatsoever and having 2 kids 1 a tween and one a toddler not a good thing. I would love to hear your story.
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E-Pal number 2007-116
Name: Judith
Gender: female
Age: 35
Lives in:
Years with Sjogren's: 2-5 years
About me: Fairly new to the care and treatment of Sjogrens. Have RA and FMS for years. Would like to converse with others to know what it is like to experience a life with some of these limitations. Would like positiveness to rule in all I do. Like to see how others prevail and go on, happily!
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E-Pal number 2007-115
Name: Sherri
Gender: female
Age: 64
Lives in: Florida, USA
Years with Sjogren's: 10
About me: I lived in Ohio before coming down to Florida a year ago. I live in Spring Hill Fla. Have had Sjogrens syndrome for 10 years. I was recently diagnosed with breast cancer also. Thank goodness in early stages. So I am coping with two problems. I would like to correspond with someone who has had this health problem for a while. Maybe we can help each other cope. I am a very upbeat person who likes to laugh and enjoy life. Hope to hear from anyone who would like to e-mail with me.
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E-Pal number 2007-114
Name: Maree
Gender: female
Age: 36
Lives in: NSW, Australia
Years with Sjogren's: 9
About me: Have been diagnosed with Sjogren's for 9 years. Am looking to write to someone who can understand what I can go through, but also loves similar things to me. I am a 36 yr old mum, I have 2 children, love to scrapbook, learning to knit, gardening , cooking, going to the movies and am owned by many animals!!
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E-Pal number 2007-113
Name: Mary-Therese
Gender: female
Age: 66
Lives in: Australia
Years with Sjogren's: scleroderma 16
About me: I find the trip with scleroderma with Sjogren's a very lonely one and would like some sharing plus ideas time. I am a very smiling type and live my life from a wheelchair. I use public transport and get myself out a lot. I like all sorts of music outings etc. I'm working with exercise to tone and shed those dread kilos. I am into meditation.
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E-Pal number 2007-112
Name: Brenda
Gender: female
Age: 41
Lives in: Ohio, USA
Years with Sjogren's: 15
About me: Hi my name is Brenda. What I looking for is someone who has had sjs for awhile. I didn't know it is as bad as I've been reading. Would like to talk others/ to find out what it is like.
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E-Pal number 2007-111
Name: Nancy
Gender: female
Age: 68
Lives in: Spring Hill, Florida, USA
Years with Sjogren's: 9
About me: I am interested in finding a like person to email with who will understand what I am talking about when I complain about this syndrome. LOL I have found that unless you have actual experience with it, it is useless to try and have a conversation. Want to know what others are doing to work through the bad days. On the good days, I like to read, crochet, do crosswords, cook and bake. I am a positive person who tries to keep a good sense of humor going for the most part. I also am dealing with fibromyalgia, rheumatoid arthritis and have recently tested positive for Lupus.
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E-Pal number 2007-110
Name: Wendy
Gender: female
Age: 37
Lives in: Rhode Island, USA
Years with Sjogren's: 1
About me: Hey there, so this is really new to me....and I am scared. I feel completely fine I have no issues other then some hair breakage...feel great...very nervous with my positive ANA 1:180 speckle pattern. whatever that means. just feelin pretty alone.
I run a large company have two small kids and I am just a worry wart when it comes to my health. anyone that feels the same way with no symptoms I would love to talk with....but also would love to talk to someone that has had this for allot of years to know it is not a death sentence as well...anyway hope to hear from ya....
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E-Pal number 2007-109
Name: Evelyn
Gender: female
Age: 29
Lives in: Cuyahoga, Ohio, USA
Years with Sjogren's: 1
About me: HELLO MY NAME IS EVELYN I GOT DIAGNOSED WITH SJOGREN'S ABOUT A MONTH AGO. BUT I BELIEVED ITS BEEN MORE THEN AT LEAST A YEAR I JUST DIDN'T PAY ENOUGH ATTENTION. WHAT I AM LOOKING FOR INA A AND E-PAL IS SOMEONE THAT IS VERY FRIENDLY AND HAS A GREAT SENSE OF HUMOR BECAUSE I LOVE TO LAUGH AND HAS A WONDERFUL HEART. I AM A VERY QUIET PERSON I LOVES COMEDY MOVIES AND DON'T LIKE SCARY MOVIES. I AM USUALLY ON THE COMPUTER. BUT I AM AND OPEN AND HONEST PERSON AND I WANT TO MEET ALLOT OF PEOPLE LIKE MYSELF.
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E-Pal number 2007-108
Name: Tracey
Gender: female
Age: 25
Lives in: Arizona, USA
Years with Sjogren's: 1
About me: I've recently been diagnosed with Sjogren's. The more I learn the more it makes sense. I am a teacher and finding that I'm struggling a lot with work. I would love to talk with someone else who is living with the same problems. No one seems to understand what I'm dealing with and I'm tired of telling everyone "I'm fine". I'm still learning about what life with Sjogren's means and have a lot of questions.
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E-Pal number 2007-107
Name: Rosanne
Gender: female
Age: 55
Lives in: Pennsylvania, USA
Years with Sjogren's: since March 2007
About me: I have been healthy my entire life. Always worked long hours and I have always been very active. I don't understand how I got Sjogren's. Keep thinking they are wrong. In reading the E-pals, I looked for a common link, but we are different except for stressful lifestyles and poor sleep patterns. Would like to talk with someone who is looking for a way to beat this disease. I don't want to spend the rest of my life (and energy) in doctor's offices. I don't like the effects of medicine and need to find other ways to deal with this.
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E-Pal number 2007-106
Name: Sarah
Gender: female
Age: 69
Lives in: Georgia, USA
Years with Sjogren's: who knows?
About me: I am still waiting on definitive diagnosis. I see the Rheumy on Oct. 19. I retired from teaching on May 29. I am just two tired to do it anymore even though I loved it. My husband died 21 years ago. I had five children, 4 girls & 1 boy. My boy died in an accident on Dec. 22, 2004. I have three grandchildren, a girl 16, and boys 16 and 18. I love to read, cook, spend time with my cats, and my children/grands. I have multiple symptoms and a recent positive ANA. I live alone and feel lonely with all these symptoms that make me sound crazy. I would love to talk to someone. I found this place in the middle of another sleepless night.
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E-Pal number 2007-105
Name: Wendy
Gender: female
Age: 35
Lives in: Arizona, USA
Years with Sjogren's: 13
About me: Hi, I am a mother of 3 kids, who works part-time in childcare. I was diagnosed with SS, and OSTEOARTHRITIS, AND FIBROMYALGIA about 3yrs ago. Looking for anyone to chat with that understands what life is like when in pain, and having to take care of kids.
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E-Pal number 2007-104
Name: David
Gender: male
Age: 66
Lives in: Washington, USA
Years with Sjogren's: 10+
About me: I have never had the biopsy done because when they first told me I had Sjogrens in the 90s, they also said this test will be painful, it is not a positive test & there is no treatment/cure.
Hummm, why do something painful?
Now at 66 I am experiencing extreme dry mouth. One of the medicines I should be taking can promote "dry mouth". So I have had to quit that.
I have decided to become proactive and see if there is any help & support available. I ran across this group & it seems there is at least support.
Who knows maybe some ones home remedy will help me. ;-)~~~~~
E-Pal number 2007-103
Name: Betty
Gender: female
Age: 64
Lives in: Nevada, USA
Years with Sjogren's: 1
About me: Diagnosed 1 year ago, but had symptoms for many years. Always told I look fine. Have 2 daughters, 5 grandchildren. Retired teacher. Formerly high energy, now fatigued, etc. Would like to start sharing with others.
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E-Pal number 2007-102
Name: Annie
Gender: female
Age: 56
Lives in: Texas, USA
Years with Sjogren's: 2+
About me: I have been diagnosed with Primary Sjogrens for about 2 years, but have probably had it for many more. I am looking for somebody close to my age that can share experiences with this disease and its related problems. I have recently developed some neurological problems as well and am not sure what to do about it.
I work full time as a school district superintendent and the stress level of the job has probably attributed to the progression of the disease.
I enjoy my grandchildren, sewing, shopping, etc. I would like to chat and share with someone who understands and can be positive...putting things in perspective.
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E-Pal number 2007-101
Name: Anne
Gender: female
Age: 37
Lives in: Alabama, USA
Years with Sjogren's: formal diagnosis 2007
About me: I'm a musician/music teacher by vocation and a ballroom dancer and photographer by avocation. Probably like for most here, it has been a number of years from onset of recognizable symptoms to actual diagnosis. I would like to join in the fellowship of folks who understand what living with autoimmune diseases is like - the good, the bad, the in-between. I'm also interested in finding more non-prescription ways to improve quality of life. (Aren't we all?! ;) )
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E-Pal number 2007-100
Name: Jody
Gender: female
Age: 29
Lives in: Los Angeles, California, USA
Years with Sjogren's: 1
About me: Just diagnosed with SS had problems my whole life that make sense to SS but I just always dealt with them, and still do. I'm a graphic designer and work for myself which is nice but I don't know what is normal or what is SS, and what to look for in the future. Any communication is appreciated.
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E-Pal number 2007-099
Name: Jennifer
Gender: female
Age: 35
Lives in: Kelowna BC Canada
Years with Sjogren's: 12
About me: I have had some success with treating my symptoms with more natural and alternative approaches. I would love to share this info so that I can help others. I would also love to chat with others as I can have bad days too. I would love to hear from others that live in Canada as well.
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E-Pal number 2007-098
Name: Faith
Gender: female
Age: 48
Lives in: Kentucky, USA
Years with Sjogren's: Too many
About me: I've had dry eyes/mouth/nose for 10-15 years, but my ophthalmologist kept telling me my eyes were fine. I was finally diagnosed (+ Schirmer's and ANA & symptoms) with Primary Sjogren's in 2005 while trying to get an MS diagnosis. I'm still on that path due to multiple lesions on my brain MRI (that don't change in over 10 years). My rheumy says CNS involvement is too rare and my neuro says it's MS, but I am still not convinced it's not Sjogren's. I would like to talk with anyone else who has similar issues. I also have RLS and IBS. Not on any meds except ibuprofen.
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E-Pal number 2007-097
Name: Ingrid
Gender: female
Age: 63
Lives in: Germany
Years with Sjogren's: don't know?
About me: I am looking for some pals where I can talk about my sickness.
I am from Germany and I will come in May 2008 to Portland. My daughter leaves there. I Have a lot of problems with my health, like dryness of the mouth, muscle pains, a have a new hip and knee 1996. Fibromyalgia and arthritis. Also I am in the wheel-chair most of the time. I love to cook and work on my computer.
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E-Pal number 2007-096
Name: Ruth
Gender: female
Age: 67
Lives in: Illinois, USA
Years with Sjogren's: 10 or more
About me: I was officially diagnosed with Sjogren's about 2 years ago. I was diag. with blepharitis 17 years ago. I had 3 miscarriages in my 20's and 30's. I also have Limited Scleroderma. I have 6 children and 16 grandchildren. Looking for someone to exchange experiences and support. My main problem is dry eyes. I am considering cataract surgery, but am a little concerned about how my eyes will react to the sun. Am I going to have to wear sunglasses all the time?
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E-Pal number 2007-095
Name: Nancy
Gender: female
Age: 49
Lives in: Missouri, USA
Years with Sjogren's: 1 month
About me: I am looking for a pal that will coach and support me with information for the syndrome. I am 45 with 4 adult children and work in the field of education. I love to dance but I am limited with the syndrome.
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E-Pal number 2007-094
Name: Kim
Gender: female
Age: 35
Lives in: Tennessee, USA
Years with Sjogren's: newly diagnosed
About me: Hi! I'm Kim a married mom of 2. I was diagnosed in July with SLE and SS. I am looking to talk with people who are in similar sit. I love to be with family, friends, read, and would like to find someone who understands that humor can be found in all situations but that everyday isn't perfect! A new friend who relates and would like to walk on this new path and hopefully we can laugh and if need cry (hopefully not many of those days) together! Hope to hear from you soon! Kim~~~~~
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E-Pal number 2007-092
Name: Kimberly
Gender: female
Age: 25
Lives in: New York, USA
Years with Sjogren's: 3 months
About me: I am a 25 yr old female newly diagnosed looking to communicate with someone around my age who can relate to the questions I may have and hopefully mutually we can assist one another.
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E-Pal number 2007-091
Name: Sue-Ellen
Gender: female
Age: 45
Lives in: Arkansas, USA
Years with Sjogren's: 2
About me: I was diagnosed with SS 2 years ago after I had a dental procedure and my parotid glands swelled up like baseballs. I have been battling the pain in the glands, extreme fatigue and muscle/joint pain. Would like to talk with someone who can help me get through this difficult time.
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E-Pal number 2007-090
Name: Denise
Gender: female
Age: 33
Lives in: Wisconsin, USA
Years with Sjogren's: pending
About me: I have not been formally diagnosed yet, but all signs are "go" for Sjogren's. I have had blood work done a few months ago, and tested positive for ANAs and SSAs. Mostly, I am just looking for people to talk to about this.
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E-Pal number 2007-089
Name: Mary
Gender: female
Age: 35
Lives in: Louisiana, USA
Years with Sjogren's: 4
About me: Life has totally changed for me. I have a very active disease with other related diseases. Cystitis, Fibromyalgia, asthma, costochondritis, auto immune hepatitis, extreme migraines, extreme dryness, pain everywhere, and now kidney stones. I am always extremely tired. I need a miracle that doesn't involve another drug.
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E-Pal number 2007-088
Name: Virginia
Gender: female
Age: 24
Lives in: California, USA
Years with Sjogren's: 1 month
About me: I am a mother of two, who was recently diagnosed with S.S. I have another meeting with a specialist in a couple of weeks. I am really looking forward to talking with someone who is experiencing the same thing. Currently I have dry eyes which has caused me to have Iritis 3 times and I also have dry mouth/nose. I have been so tired and suffer from back pain daily.
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E-Pal number 2007-087
Name: Manon
Gender: female
Age: 43
Lives in: Quebec, Canada
Years with Sjogren's: 10+
About me: I've finally have been diagnosed after 10 years of being told I was probably just depressed and pain was in my head!!! I am a single mother of a 10 year old adopted boy, struggling to keep working. I have primary symptoms (dry eyes and mouth) but also rheumatoid arthritis and neuropathy.. along with the familiar fatigue, lack of energy, no sleep... finding support is hard as most site are for people outdoing one another for worst symptoms of the day!!!! and books are scary!!!! Looking for an eye to read me ( as opposed to an ear to listen to me) . I used to swim, hike, now mostly read. I love any mystery/legal/medical thriller....I also love music, architecture, movies. Can't wait to read from a pal that gets me !!!! I am (or should be) more than this disease!
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E-Pal number 2007-086
Name: Tara
Gender: female
Age: 24
Lives in: Ohio, USA
Years with Sjogren's: 2 weeks
About me: I am a 24 year old female with a 3 year old son. I have recently been diagnosed with SS and Raynaud's and am having a terrible time dealing with it. I currently am experiencing dry eyes and mouth but no pain yet. I am taking Plaquenil 2 times a day. I have good days and days with extreme depression and anxiety. I am looking with someone around my age that will be willing to communicate.
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E-Pal number 2007-085
Name: Emily
Gender: female
Age: 30
Lives in: Massachusetts, USA
Years with Sjogren's: 0
About me: I am 30 years old and have just been diagnosed with Sjogren's Syndrome since late June 2007 (2 weeks ago). For the last 5-6 years, I have been dealing with autoimmune connective tissue disease symptoms such as fatigue, muscle and joint pain, and doctor's initially told me I had fibromyalgia. I knew that I've had that for several years but I felt that I also had something that was getting worse. Originally, all of my blood work was normal except my sed rate and CRP which shouldn't be abnormal. This last year my symptoms have gotten much worse and doctors attributed it to allergies but my ANA, RF, and Sed Rate were all elevated. I felt sick all of the time-my glands felt swollen, my throat scratchy and sore, and my allergies did become worse. I am looking for someone who understands how difficult it is to get diagnosed with this and to cope with it. I also want to talk with someone about my fears because I have been doing research and it can be a little frightening. I haven't had children yet and I am also nervous about how this would effect pregnancy. I have been overweight most of my life so I am nervous about the taking the drugs I may need as well. Currently, I am only taking Evoxac for the dry mouth.
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E-Pal number 2007-084
Name: Kellee
Gender: female
Age: 34
Lives in: NSW, Australia
Years with Sjogren's: pending but likely
About me: I'm looking for someone to write to and share experiences about Sjogren's and AI as well as just life in general. I'm a Registered Nurse. I love music, reading, dogs, just general stuff, I have a wacky sense of humour and would love to just chat and maybe help someone get through the day and make a real friend.
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E-Pal number 2007-083
Name: Kim
Gender: female
Age: 27
Lives in: Midwest USA
Years with Sjogren's: just diagnosed
About me: Hello! I am a married 27 year old CPA that has just been diagnosed by eye/auto-immune specialist by ANA/CBC. I will meet with a rheumatologist in a few weeks for further testing. We are also looking to start a family shortly, so I would love someone who has dealt with this disease and the pregnancy/first year frustrations, as well as a profession. Dealing with dry eyes, mouth, and fatigue more than anything currently. Thank you for your consideration!
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E-Pal number 2007-082
Name: Carol
Gender: female
Age: 44
Lives in: California, USA
Years with Sjogren's: 6
About me: Hi, I'm Carol, and I was hit, like a ton of bricks, with fatigue and 'Hunch Back Of Notre Dame' stiffness 6 years ago. Like all of you, it was all because of me over or under doing it. It was also all in my head. Then one day I came across e-pals. I didn't say much; I just said I was really struggling and needed help. Thankfully, Ande, responded. I've never talked to her, personally, but we have been in contact through the serious and the silly and it has meant everything to, at least, me.
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E-Pal number 2007-081
Name: G. Philip
Gender: male
Age: 60
Lives in: Lancaster, Pennsylvania, USA
Years with Sjogren's: 7
About me: I am a "voracious reader", have "SS" pretty much under control, w/ notable exceptions, looking to "huddle" w/ another "SS" patient to learn from one another. Also have 5 other auto-immune disorders, so life gets interesting. "MS" is the biggest driver in my life, w/ many complications. BUT - No sympathy being sought, NONE at all. Not interested in offering sympathy to anyone else either, just earnest counsel, if I can offer any. Am a "good guy."
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E-Pal number 2007-080
Name: Denise
Gender: female
Age: 45
Lives in: Texas, USA
Years with Sjogren's: 29
About me: I was diagnosed with Sjogren’s when I was just 16. I have never known what it was like to be “normal” having always battled with fatigue, dry eyes, painful joints, and “brain fog”. I am still healthy enough to work full time as an accountant and have been married to a wonderful, supportive man for 9 years. I just want to talk to others who understand what I am going though on those bad days.
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E-Pal number 2007-079
Name: Bev
Gender: female
Age: 50
Lives in:
Years with Sjogren's: 5 (or more)
About me: Diagnosed in August 2002 with SJS. Since then I have been told that I also have systemic vasculitis with Central Nervous System Involvement. Lupus is strongly suspected. Symptoms are too numerous to list, but range from overwhelming fatigue to burning, fiery, stinging painful neuropathy to MS-Type symptoms. I would like to correspond with someone that is as overwhelmed with all of this as I am. I would like to hear from others on how they are dealing with the life style changes. If you just need someone to talk to, please feel free to ask me to be your E-Pal. I am a good listener and would like to help in anyway that I can. I would welcome anyone with multiple family members that have autoimmune disorders.
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E-Pal number 2007-078
Name: Carole
Gender: female
Age: 59
Lives in: Sinaloa, Mexico
Years with Sjogren's: 10 years
About me: Originally from Oregon, I now live in Mazatlan, Mexico . I love the outdoors, especially gardening. I love reading! I have slowly been battling this SS for some time but recently it has been interfering with my life to the point I don't enjoy being outside. I don't like being a slave to my eye drops, the pain, the sunglasses. I feel that there is something I should or can be doing to resolve or alleviate this problem and I am frustrated.
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E-Pal number 2007-077
Name: Mary
Gender: female
Age: 53
Lives in: Florida, USA
Years with Sjogren's: 8 years?
About me: Hello, ya'll. I'm a young-at-heart Nana with 3 grandchildren struggling to keep working (as an accounting manager) and handle home life despite having fibromyalgia, Sjogren's, osteoarthritis, and Hashimoto's Thyroiditis. I have a wonderful husband (10 years) and 2 sweet little dogs. I enjoy reading, gardening, hiking, digital photography, watching movies and community theater, and music (classical to classic rock). Would like advice on how to cope with fatigue, painful glands and joints, vertigo, and of course, dry scratchy eyes and cotton mouth.
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E-Pal number 2007-076
Name: Michele
Gender: female
Age: 38
Lives in: Illinois, USA
Years with Sjogren's: 1 year
About me: I have been diagnosed with Sjogren's since Nov of '06. I am looking for an e-pal to chat with regarding Western and Alternative treatments for Sjogren's. Also need to hear from others who are living with fatigue, trying to work and raise children.
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E-Pal number 2007-075
Name: Sharon
Gender: female
Age: 64
Lives in: Washington State, USA
Years with Sjogren's: 10 years
About me: I am a 64 year married old female, living in the country in the Pacific Northwest. Probably have had Sjogrens for at least 15 years. It is pretty much under control (with medication) to the point where I can live with it, except for occasional flares. I enjoy crafts camping, photography and animals, especially my foster dogs.
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E-Pal number 2007-074
Name: Lynn
Gender: female
Age: 60
Lives in: Ca, USA
Years with Sjogren's: 2 1/2 years
About me: I have been dealing with painful symptoms and off. I did have serious depression when I was diagnosed with Interstitial Cystitis I.C. and then a serious bronchial infection. I hit the floor and was hospitalized for depression. I am better thanks to counseling and Wellbutin. I get so down when my glands swell because of the pain. My eyes aren't bad, but I suffer with dry mouth and I had to have gum surgery. I would just like to build someone else up and correspond with about different ways to cope. I hate being the victim when I have a flare up!
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E-Pal number 2007-073
Name: Brenda
Gender: female
Age: 57
Lives in: Arkansas USA
Years with Sjogren's: 12 years
About me: Diagnosed 12 years ago but have probably had illness longer. Conducted clinical trials on EVOXAC and interferons. Have remained on interferon orals 9 years My saving grace for moisture. Seem to be getting more and more different symptoms. Lungs, nerves etc. Looking for answers to disease progression.
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E-Pal number 2007-072
Name: Michael
Gender: male
Age: 34
Lives in: Ohio, USA
Years with Sjogren's: 4 months
About Me: Confirmed RF and SSA Primary SS Feb 07. On Plaquenil (generic) since then. No joint pain, some fatigue, anxiety depression appears to be the worst. Most difficult seems to be what to expect with this some days are good some days are ok. Overall I am just blessed with what I have. I am at the Cleveland Clinic and I think my Rhume thinks I am crazed hypochondriac. Anyone who wants somebody to listen I am here.
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E-Pal number 2007-071
Name: Mary
Gender: female
Age: 34
Lives in: Australia
Years with Sjogren's: newly diagnosed
About Me: Hi! I am 34 years old and have been under investigation for nearly 3 years. Six months ago a specialist clinically diagnosed me with Sjogren's and I will get confirmation on Friday (Results of all tests. In the last 6 months my symptoms have gotten worse. After nearly 3 years, I started believing I was going crazy, my GP tells me that I am in the Grieving Period. Would love to communicate with people who understands what I am going through.
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E-Pal number 2007-070
Name: Heather
Gender: female
Age: 30
Lives in: Illinois, USA
Years with Sjogren's: newly diagnosed
About Me: Hello.....Towards the end of last month I went to the doctor with what I thought was poison oak or ivy or a side affect to a new medication. My Dr. told me that I had arthritis and the lumps and pain in my hands was caused by it. (I thought she may have been crazy). I went through a bunch of blood tests. On Wednesday of this month my Dr. told me that she thought I had Sjogren's, she gave me a handout which was very vague and now here I am. I guess I could have had this for a long time and just shrugged all the symptoms off to something else (who knows!!) Anyway the more I read on the Internet the more concerned I get. I am wondering if I should get a second opinion or see a specialist.
God bless!!
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E-Pal number 2007-069
Name: Karen
Gender: female
Age: 53
Lives in: Indiana, USA
Years with Sjogren's: 0 years
About Me: I need to talk with someone that understands and has been able to live & comfortably with Sjogren's. I just learned I have Sjogren's. I have lived a productive life with Lupus for 37 years. Now, I am a little disgruntled and confused about dealing with Sjogren's.
My main objective is to stay healthy so I can enjoy my personal life as well as keep my job. I work as a recreation therapist with a strong art background. I enjoy drawing, crafts and country living in rural Indiana.
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E-Pal number 2007-068
Name: Zsuzsa
Gender: female
Age: 42
Lives in: IL, USA
Years with Sjogren's: 0 years
About Me: I was just diagnosed with Sjogren's. Would like to find out about preventing and beating fatigue and about alternative therapies.
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E-Pal number 2007-067
Name: Nancy
Gender: female
Age: 43
Lives in: Wisconsin, USA
Years with Sjogren's: 9 years
About Me: I will be 44 in August. I have been very happily married for 25 years and have two daughters; one married, one engaged. I was diagnosed with Sjogrens nine years ago after 2 1/2 years of trying to figure out what was wrong. I recently discovered Sjogrens World while trying to get answers about migraines that have increased over the last year to more than one a week. The site opened a whole new world of information and support and has already answered many questions and caused me to ask many more. It turns out my Rheumatologist hasn't been very informative over the years and I'm now looking for a new one. I'm not looking for any particular type of e-pal. I'm pretty open; hoping to find someone to share the daily challenges of living in a body that you can't trust from day to day or hour to hour.
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E-Pal number 2007-066
Name: Suzana
Gender: female
Age: 42
Lives in: New York, USA
Years with Sjogren's: 1 month
About Me: I have just been diagnosed less than a month ago. It was a 6 months ordeal. Since February I have suspected I have Sjogren's and went to the best DR. in New York. Had a lip biopsy which came back equivocal, sialogram which was negative and negative blood results. Go figure. Finally, a rheumatologist with the experience in Sjogren's had diagnosed me. I have a 7-year old boy which is the light of my life. Even though I am married my husband works in Washington D.C. and does not understand and/or care. I just started on Plaquenil and Evoxac and would like to talk to someone with experience with this medication. Also, anyone fighting this horrible disease alone (I have no family members) please contact me. I also have terrible sleep problems. Cannot fall or stay a sleep. Mornings are just horrible.
God bless you all
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E-Pal number 2007-065
Name: Wendy
Gender: female
Age: 39
Lives in: Florida, USA
Years with Sjogren's: 2
About Me: I am 39 years old, full time stepmother to two teenage girls and married to a great person. In addition to Sjogrens I also have Vitalgo and Hashimotos Thyroid. I live in constant fearing of dying and getting Lymphoma as a result of the Sjogrens. I am in desperate need of a good support person. Hope there is someone willing to help.
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E-Pal number 2007-064
Name: Heather
Gender: female
Age: 56
Lives in: British Columbia, Canada
Years with Sjogren's: 11
About Me: Hello, I've had SjS for over 11 years now. When I was first diagnosed didn't know much about it. Read up on it and learn't a lot. Also started a SjS support group. Would like to meet someone around the same age as myself. I find that as the years go on this illness does not get any better and in my case is progressing. Would like to hear from others who think this as well.
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E-Pal number 2007-063
Name: Julie
Gender: female
Age: 49
Lives in: UK
Years with Sjogren's: 1
About Me: I am 49 years old from the UK and was diagnosed 2 weeks ago after 15 months of experiencing symptoms. My symptoms include muscle pain from my neck to my toes, dry mouth, which has improved after acupuncture, sore glands and general fatigue.
I am still working as a classroom assistant but rest more at home, thank goodness for school holidays! I was an active person but I have had to slow down. - Julie
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E-Pal number 2007-062
Name: Kelly
Gender: female
Age: 25
Lives in: North Carolina, USA
Years with Sjogren's: 6 mos.
About Me: I was diagnosed 6 mos. ago by a physician who told me nothing about the syndrome except that it only causes dry mouth. Ha! Eventually I saw a rheumatologist who straightened that out for me. Mainly I experience fatigue, migraines, and back and neck pain. I am not as active as I used to be, but thankfully have not had any major issues yet. Just looking for someone around my age to chat with about the syndrome!
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E-Pal number 2007-061
Name: Lisa
Gender: female
Age: ?
Lives in: California, USA
Years with Sjogren's: 2
About Me: I was diagnosed almost 2 years ago. I am starting school in a few weeks to obtain a degree in accounting. I would love to talk to anyone with information on dealing with pain, trouble walking and if you know if it is possible to get disability benefits with a Sjogren's syndrome diagnosis.
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E-Pal number 2007-060
Name: Karen
Gender: female
Age: 37
Lives in: California, USA
Years with Sjogren's: 12
About Me: For almost the past 2 years, I have been going through a severe Sjogren's flare-up, along with Fibromyalgia. I’m a single 37 year old woman with ALL the Sjogren’s symptoms (fatigue, major dryness, neurological & some organ involvement). I haven’t worked in over a year because of my symptoms. I’m looking to meet some good people who can relate to me. I’ve found this disease to be VERY lonely… and have lost many friends because of it. I want to be an understand friend who truly gets you!
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E-Pal number 2007-058
Name: Denise
Gender: female
Age: 62
Lives in: USA
Years with Sjogren's: 1
About Me: I was diagnosed last year with Sjogren's - I am still at a loss to understand how it happened - I had the flu shot and the next day both sides of my face were so swollen - the doctors thought I had the mumps - it took almost three months to diagnose this disease - just feel so lonely. My children (4) don't really understand the disease - I am still working and on medication - I would like to relate this disease with somebody who has it.
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E-Pal number 2007-057
Name: Julie
Gender: female
Age: 56
Lives in: California, USA
Years with Sjogren's: 10
About Me: Hi, I am Julie and I have Primary SS. My mouth dryness is extreme. Would like to know some one with PSS to exchange ideas, thoughts, natural remedies to alleviate symptoms. I have lots of suggestions. Happy to share info. with anyone. Want to make friends. I am a very friendly and loving person. SS really is a tough one to deal with, therefore we need each other's shoulders to lean on.
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E-Pal number 2007-056
Name: Lois
Gender: female
Age: 61
Lives in: Arizona, USA
Years with Sjogren's: 30+
About Me: Hi, I am a retired ER nurse, retired at 58 due to my illness. I am going to college for fine arts degree. I have had a great range of symptoms, having been sick with the beast so long. Take plaq, MTX and will be starting Enbrel. Have learned to work around my Sjogrens, with the help of my doctors and good friends in the medical field. Still this illness is a bummer any way you look at it. Have learned that if I treat my Sjogrens well it will be livable. It is all about balance. Looking for up beat funny survivor spirit to write to. Will answer any questions on how I cope, and tricks from my background.
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E-Pal number 2007-055
Name: Lisa
Gender: female
Age: 50
Lives in: Colorado, USA
Years with Sjogren's: 15
About Me: Hi there my name is Lisa. I was diagnosed with Sjogren's Syndrome about 15 years ago, also I have been diagnosed with Polymyositis. I work a full time job 12 hr shifts this is very hard with my joint pains very fatigue, with this disease dry mouth I have lost all my teeth now with dentures. I'm having a problem eating with the dentures, is there anyone with this problem I would like to hear from you. I have been told about Implants but there too expensive.. can we get insurance to help pay for this problem. I have two children age 28 and 30, three grandchildren whom I know this is why I have to fight this disease. Would like to hear from you.
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E-Pal number 2007-054
Name: Dina
Gender: female
Age: 42
Lives in: Iowa, USA
Years with Sjogren's: 5
About Me: Was diagnosed 5 1/2 years ago but as always have had this for way longer. Total of 4 autoimmune diseases- Secondary Sjogren's, boarder-line Lupus, RA, and Diabetes. Side labels are Osteoporosis, Osteoarthritis, Degenerative disk disease, IBD, GERD, Neuropathy, depression, and fibromyalgia. As always I look great, like I'm in my late 30's and as always feel like heck! I started all this at 18 when I was put in the hospital for Mono, pneumonia, strep, tonsillitis and dehydration. After that it was one thing after another till was diagnosed 12 years ago with general connective tissue disease. Found a treatment that worked had it for 3 years and became allergic to the drugs but had remission for 5 years. It was heaven! This time started out slow and is building up speed quicker that I had hoped. It is a lonely disease with even family not understanding it all. Was hoping to find some one around my age that is bored and likes to talk and share ideas.
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E-Pal number 2007-053
Name: Krystal
Gender: female
Age: 23
Lives in: Texas, USA
Years with Sjogren's: one month
About Me: Hello, I was just diagnosed and so far, I have only had more pain. I'm going for a second opinion, for one cuz the doctor said I should and another I dislike my doctor. But I am excited that they finally know or think they know what has been wrong with me for years. I'm just worried about job and money problems. I work retail and well the steroids I am taking right now cause my arms and legs to hurt. I would like to work at home, but you know now how that can be. I don't want to me a home body. Anyways I can't wait to talk to others. Thank you.
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E-Pal number 2007-052
Name: Michael
Gender: male
Age: 57
Lives in: Rhode Island, USA
Years with Sjogren's: 11
About Me: Hello, I'm a single male and was diagnosed with Sjogren's by lip biopsy in December 1996. First 10 years were not bad with Sjogren's, most symptoms were under control but I noticed lately more joint/muscle involvement, which I am getting checked out in a few weeks. I'm looking for a another Sjogren's E-Pal to find out how we are managing the disease together.
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E-Pal number 2007-051
Name: Betty
Gender: female
Age: 63
Lives in: (not stated)
Years with Sjogren's: not yet diagnosed
About Me: I am still working full time but have diabetes, arthritis, Reynaud's, dry mouth and eyes and joint pain I have all of the symptoms of Sjogrens and would like to have someone with this problem to email and learn more about the disease. I would enjoy hearing someone whom has tried any alternative medicine as I have problems with prescription drugs.
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E-Pal number 2007-050
Name: Jeanne
Gender: female
Age: 55
Lives in: Arizona, USA
Years with Sjogren's: just diagnosed
About Me: I am new to Sjogrens and would like to have an e-pal who has lived with this for awhile. I have some questions and need someone to discuss these symptoms with. I would also like to hear from people who have also just be diagnosed. I am a grandma of 6 and like to fish and read and go to church.
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E-Pal number 2007-048
Name: Patty
Gender: female
Age: 36
Lives in: Pennsylvania, USA
Years with Sjogren's: 10
About Me: Divorced mother of 3 boys, my youngest is 5 and autistic, which can sometimes be just as challenging, diagnosed almost 10 yrs ago, current getting no medical due to no insurance. My worst problems are sleepless nights and pain. Self employed. I don't like to moan but sometimes you just have too. Need to find someone who understands.
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E-Pal number 2007-047
Name: Maureen
Gender: female
Age: 28
Lives in: Canada
Years with Sjogren's: 2
About Me: I was given this site by a friend of mine who also has Sjogrens. She is 1 of the reasons I am still kicking around. I have primary SLE with a lot of organ involvement (extensive CNS, cardio, and nephritis (kidney. I have a secondary dx of Sjogrens, APS, Reynaud's and celiacs). When I am healthy enough I work with individuals with autism and children who are medically fragile...biggest wish is that I can work more - be sick less...
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E-Pal number 2007-046
Name: Kathy
Gender: female
Age: 17
Lives in: Tennessee, USA
Years with Sjogren's: not yet diagnosed
About Me: I have been told SS is suspected by my DO and have an appointment with an opthamologist on May 4th. (Thank Goodness!) I also suffer from fibromyalgia, connective tissue disorder, TMJ, cluster migraines, and CFS.
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E-Pal number 2007-045
Name: Katie
Gender: female
Age: 26
Lives in: Wisconsin, USA
Years with Sjogren's: recent
About Me: Dx'd with Sjogren's Syndrome due to re-current inflamed parotid glands. Along with this, I have been dealing with several other auto-immune type symptoms which have basically turned my world upside down. Up until now I lead a very active lifestyle (working out daily, sports...), but due to fatigue and joint pain, this has been limited. I am looking for someone around my age who also is very physically active and is willing to chat about symptoms, motivate...
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E-Pal number 2007-044
Name: Lyn
Gender: female
Age: 39
Lives in: New Jersey, USA
Years with Sjogren's: 1
About Me: Hi, I have been recently diagnosed with Secondary Sjogren's. I have primary connective tissue disease (Polymyositis) as well as Vasculitis, Fibromyalgia, Osteopenia, Neuroma, Raynauds, and who knows what else :-). I'd like to find an E-Pal that also has a connective tissue disease and or any other similar diseases.
Thank you very much and have a pleasant day! Lyn
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E-Pal number 2007-043
Name: Donna
Gender: female
Age: 55
Lives in: Indiana, USA
Years with Sjogren's: n/a
About Me: I am writing for a friend who does not own a computer. She is in her 50's and just diagnosed with Sjogrens. She is interested particularly in hearing from people who also suffer with rheumatoid arthritis. She's very fearful and any encouragement is appreciated. I am her "maillady".
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E-Pal number 2007-042
Name: Donna
Gender: female
Age: 60
Lives in: Portland, Oregon, USA
Years with Sjogren's: not yet diagnosed
About Me: My name is Donna and I am new to Portland. For 50 plus years I have asked Dr. why do my bowels not work without dynamite. ( oh some people are just that way, get used to it. ..why do I always have bad breath... an a clabbered tongue lots of dental problems.. Oh some people are just that way deal with it. Teeth replaced with dentures. Nearly died in 1998.. I had emergency appendectomy .. an since the lab works showed 'NO' increase in Blood count.. they finally went for exploratory.. only to retrieve a nearly blown appy..." HELLO abnormal blood work. I tore the internet apart researching DRY MOUTH.. found the sjogrens site of "10 signs" Jack pot.. I had 9.9.. all I needed was a Dr to "LISTEN" to ME.. I tested positive.. an collapsed.. WHY. WHY. WHYYY do they refuse to listen. Salagen became a miracle drug.. an I was elated beyond. But short lived, made heart thump.. cholestrol is off charts.. meds caused extreme muscle weakness within 24 hr.. HELL-O.. Hell-o my labs are abnormal...so for now...I have found that if I take in at least 32 oz of water I start to hydrate.. an eating one grapefruit a day certainly helps the bowels to work daily. Extreme withdrawal only adds to depression.
Does any one draw disability for this. P.S. I like to fish, dance, visit.
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E-Pal number 2007-041
Name: Mary
Gender: female
Age: 46
Lives in: Alabama, USA
Years with Sjogren's: not yet diagnosed
About Me: I HAVE NOT GOT A FINAL DIAGNOSIS YET. BUT I HAVE ALL SYMPTOMS. EXTREME DRY MOUTH, DRY EYES, FATIGUE, LUNG & KIDNEY PROBLEMS. ALSO I WAS RECENTLY DIAGNOSED AS A DIABETIC. I HAVE BEEN TO SEVERAL DOCTORS ANY HAD THE BLOOD TESTS AND LIP BIOPSY. ALL OF WHICH IS NEGATIVE. I DO NOT KNOW WHERE TO GO NEXT. I ALSO HAVE COPD AND COULD NOT TAKE THE SALAGEN. I USE OVER THE COUNTER EYE DROPS AND BIOTENE, ALSO OASIS MOUTH SPRAY AND RINSE. I WOULD LOVE TO HEAR FROM SOMEONE WHO HAS HAD TROUBLE GETTING FINAL DIAGNOSIS.
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E-Pal number 2007-040
Name: Chris
Gender: male
Age: 23
Lives in: Tampa, Florida, USA
Years with Sjogren's: newly diagnosed
About Me: Hey there I'm 23, about to be 24 on June 20th, was dx with Sjogrens at end of January, have a tough time dealing with it sometimes. I am really into reading, music and art. I'm going to school for graphic design and work full time as a aol tech support.
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E-Pal number 2007-039
Name: Donna
Gender: female
Age: 44
Lives in: Ranger, Georgia, USA
Years with Sjogren's: newly diagnosed
About Me: I've just recently been diagnosed after going to countless doctors, a rheumatologist who diagnosed me from my symptoms, all my blood work comes back normal, dry eyes and mouth, skin and swollen parotid gland, fatigue, aches, I had to quit my job of 17 years and I am so tired all the time. I have 2 grown children 25 and 21 and a wonderful, caring and understanding husband. If anyone else is going through the same thing I would love to talk with you.
God bless each and everyone us.
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E-Pal number 2007-036
Name: Donna
Gender: female
Age: 42
Lives in: Illinois, USA
Years with Sjogren's: 10, 2 diagnosed
About Me: I am 42 years old with 2 very active little boys (ages 5 and 2). I would love to hook up with a parent of young children who also has professional goals and is struggling with the physical! My primary symptoms are tendonitis, joint pain/stiffness, and terrible fatigue. I also have itching skin, occasional dry eyes, and dental issues.
My past was very active with running and hiking and I was definitely Type A with professional goals. In the last 4 years I have been greatly limited by fatigue, joint pain, and tendonitis from Sjogrens. I have been struggling with the healthier mindset of moderation and that, for people with Sjogrens, sometimes NOT going to the gym is as necessary as going. I am now at home with my kids, which is a struggle in that my limitations seem very amplified--I'm too tired to play, I can't squat down to their level, it's hard to get up and down, and on it goes. Although I look forward to rejoining the workforce, I am very worried about being able to get through the day.
I'm not a whiner, but sometimes I think a good "whine" is deserved! Why not? But I like to look for solutions and sometimes simple support can get one through some rough times. A good saying someone recently related has really helped--"you can't do everything, but you can always do something."
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E-Pal number 2007-035
Name: Debbie
Gender: female
Age: 42
Lives in: Pennsylvania, USA
Years with Sjogren's: 9
About Me: I have been able to live with it with out much problems but of late it has been getting worse and would like to talk with someone with more advanced stages more or less to learn how to deal with it better. I am single and like to travel. I also have fibromyalgia and other health issues.
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E-Pal number 2007-034
Name: Lynne
Gender: female
Age: 57
Lives in: NSW, Australia
Years with Sjogren's: Approx. 8 years
About Me: Hi,
I have now retired from the workforce and spend most of my time with my daughter, son and 6 grandchildren who live nearby! My interests are reading, searching the net, movies and TV, swimming and travel when finance permits!
An E-Pal either in USA, Australia or UK would be great as we can compare notes on latest SS treatments etc. Around my own age would be good as well!
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E-Pal number 2007-033
Name: Holly
Gender: female
Age: 34
Lives in: Minnesota, USA
Years with Sjogren's: 3
About Me: Hello, I was dx in 2004, have dry eyes, mouth, joint pain and dry skin with a rash now. I am married with 2 sons (3yrs and 3mos)I was dx shortly after the first one was born. I have had a horrible 2006. I was pregnant and hospitalized for 2 mos with encephalitis. I was in a med induced coma for 6 wks and spent the rest of the yr recuperating and had my 2nd son, which am very lucky he is here and health. Dr.s had told my husband he may have to make a decision of who to save me or our unborn son. Then luckily I woke up and now am back working as a daycare provider as of 3 wks ago. would like to find someone to talk to about this fun disease.
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E-Pal number 2007-032
Name: Lucy
Gender: female
Age: 62
Lives in: Michigan, USA
Years with Sjogren's: 1
About Me: I was diagnosed with primary Sjogrens in the summer of 2006. Had taken disability from job because of ongoing problems with vision and eyes, including dryness and several eye surgeries.
I noticed several new people from Michigan signing on in early 2007 and enjoy emailing with others. Although I am new to Sjogrens, I am 7 years into eye problems beginning with lasik surgery. My rheum thinks I've had the disease 7 years. This is, indeed, a new chapter in my life. Being older has advantages and makes it a little less threatening. Sjogrens is certainly a weird disease as I'm finding out.
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E-Pal number 2007-031
Name: Deborah
Gender: female
Age: 55
Lives in: Illinois, USA
Years with Sjogren's: newly diagnosed
About Me: I am a special education teacher and was just diagnosed this January. I am looking forward to communicating with someone who has valid medical information regarding Sjogren's. I am sure that I will have many questions as time goes on. I am a strong person, am not isolated, and do not tolerate whiners. However, I do have a need to communicate with others who share this syndrome for support and information.
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E-Pal number 2007-030
Name: Fran
Gender: female
Age: 52
Lives in: Michigan, USA
Years with Sjogren's: 10
About Me: Hi, I have Sjogrens, CTD, and Diabetes, each with their own symptoms. I
don't get out a lot anymore since my smile( teeth), gait, energy, etc. are not what they were. I'd like an E-Pal, someone that understands. I have a support system and they try but they really don't understand what it feels like to live a day like we do. I used to love gardening, and keeping busy. Would love to hear from you.
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E-Pal number 2007-029
Name: Sue
Gender: female
Age: 46
Lives in: Washington, USA
Years with Sjogren's: 1
About Me: I recently diagnosed with this disease, although have been experiencing symptoms for over a year. I am struggling with dry eyes, mouth, joint pain, and terrible fatigue. Would very much like to correspond with someone in this same spot.
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E-Pal number 2007-027
Name: Bonnie
Gender: female
Age: 54
Lives in: Michigan
Years with Sjogren's: 1
About Me: I am recently diagnosed with Sjogrens along with Sarcoidosis and Fibromyalgia. I am a caretaker for my elderly parents. I have no children and am not married. I recently retired due to my illness and would love to talk to someone who really understands the extreme upper back pain. If anyone has any ideas on how to relieve this let me know.
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E-Pal number 2007-026
Name: Sandy
Gender: female
Age: 36
Lives in: Illinois USA
Years with Sjogren's: 1
About Me: I was diagnosed with primary Sjogren's 1 yr ago, and being watched for lupus thus far those test have come back negative, but believe I've had Sjogren's for 10yrs or more. I am married to a wonderful man who is very understanding on days I don't feel well, I enjoy spending time with my "furbabies" 1 dog & 1 cat, and enjoy sewing on the side, I am elf employed and have a very hard time getting thru the days with the fatigue, muscle/joint pain and just overall not feeling well, would love to communicate with others going thru the same.
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E-Pal number 2007-024
Name: Carol
Gender: female
Age: 30
Lives in: Arkansas, USA
Years with Sjogren's: unknown
About Me: Well I haven't been dx'd except by my self, my doctor thinks I am just crazy and drug seeking. I have noticed some trends on here 1.I am a Nurse,2.I have a cat 3.I come from a military family 4.I think it started around 13-14 with a bout of mono. I have severe migraines, dry eyes, ear/sinus inf.,asthma,IBS,5 kidney stones removed, unexplained kidney pain/blood in urine, dry skin/rashes, RLS, Reynaud's, Hypothyroidism, testing for celiac dz?, depression oh and FATIGUE,( LPN, RN student, wife, mom of 2(4&10),Girl Scout leader, caretaker of aging parents and 2 siblings that wont age) so in my spare time I would like to find some that can at least relate even if I am just crazy.
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E-Pal number 2007-023
Name: Barbara
Gender: female
Age: 50
Lives in: New Jersey, USA
Years with Sjogren's: 10+
About Me: Told I had Sjogren's over 10 years ago. Have cysts in both parotid glands, recent biopsy showed HIV like cells and had to have HIV test done. Very scary. Have done my research but still need more information. Have 3 children, 3 grand children and one on the way. Work full time, very fatigued, excessive dry mouth and hoarseness. No one quite understands what I'm going through, just need to talk to someone who knows.
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E-Pal number 2007-022
Name: Ina
Gender: female
Age: 53
Lives in: Kentucky, USA
Years with Sjogren's: 8
About Me: I have Sjogrens along with fibromyalgia, IBS, and Interstitial Cystitis. Just need to correspond with someone who has to live daily with chronic pain and understands what we have to go through. I think sometimes it is best to talk with someone that experiences some of the same symptoms since can relate as to what you are trying to say.
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E-Pal number 2007-021
Name: Lola
Gender: female
Age: 47
Lives in: California, USA
Years with Sjogren's: 1
About Me: Hi! Seeking to find someone who understands the challenges of living with this disease. I was diagnosed in Feb. 2006, though had symptoms for years prior. Suffer from dry mouth, eyes, throat, cough, body aches and memory loss. Lots of fatigue and mood swings. Love animals. A wife and mother of a teenager girl. On Plaquenil. Have good days and not so good days. Work full time. Per-menopausal. Trying to figure things out. Feel lost, lonely, sad and have no friends, most people who know me don't know I'm ill. Learning to deal with multi doctors and new symptoms. If you need a cup of empathy or support, I'm here for you. Don't like to burden ones closest to me.
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E-Pal number 2007-019
Name: Kathy
Gender: female
Age: 48
Lives in: Florida, USA
Years with Sjogren's: 5
About Me: I was first diagnosed with Sjogren's in 2002 when I was experiencing dry mouth. The first Dr. I saw laughed at me. Fortunately I switched doctors and found one that ran blood work and found out the problem. My eyes had been dry for years prior which I always thought was from allergies or a result of Lasik surgery. My current symptoms are dry eyes, constipation, pain during sex, dry mouth and some joint pain. I have had some relief from Restasis, plugs and Flaxseed oil for the eyes. I'd like advice for the painful sex and constipation if anyone has found relief. I'm married, work full time and have two cats. I would like to talk to others that are experiencing similar symptoms.
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E-Pal number 2007-018
Name: Linda
Gender: female
Age: 61
Lives in: Canada
Years with Sjogren's: 5
About Me: Since I'm no longer taking Celebrex my eye problems have almost disappeared. I still use Liposic and Systane regularly but the infections are not as frequent. My main problem is my mouth! Over the last five years I've had many fillings and extractions. I now have more cavities and the dentist is recommending implants so the plate can rest on something other than my gums because they are so sensitive. I use Powell Solution (tetracycline) mouth rinse. Is there anyone out there that has had the same problem?
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E-Pal number 2007-015
Name: Kathryn
Gender: female
Age: 33
Lives in: Pennsylvania, USA
Years with Sjogren's: 2 weeks diagnosed
About Me: I am a mom of 3 (8, 5, 9 months), work full time. I was just diagnosed even though I have probably had it for years. Don't quite understand what is going on with me and what I need to do, learn, I guess you could say I am lost with this. I need help figuring out everything. I have so many questions. I just need someone to "talk to".
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E-Pal number 2007-009
Name: Becky
Gender: female
Age: 47
Lives in: Washington, USA
Years with Sjogren's: 37
About Me: Hi my name is Becky and I have had Sjogrens since I was 10. All though I never knew it. I was told I had hypergammagloblinanemipurpra until I was sent to an Rheumatologist just a month ago. He told me I had Sjogrens and since than I have done so much research. I couldn't believe what I was reading, it was explaining exactly how I have been feeling for years. It was comforting to know that my feeling and illness were real and not in my head and I wasn't a lazy person who was sick all the time. I wish I had known about this sooner I could of taught myself how to live with this instead of always pushing myself and blaming myself for how I felt. I would love to talk to someone who has experience the same as I have. I know of no one who feels the same as I so there has been no one who can relate to the same as myself.
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E-Pal number 2007-007
Name: Tam
Gender: female
Age: 48
Lives in: Virginia, USA
Years with Sjogren's: 1
About Me: I'm new this illness, I have lots of questions and grieving concern, please help! God Bless
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E-Pal number 2007-006
Name: Elisha
Gender: female
Age: 23
Lives in: New Jersey, USA
Years with Sjogren's: 2
About Me: I am a 23 year old female, going on 24 in March who was misdiagnosed for the last two years. I was told that I had fibromyalgia, and it wasn't until this past week that I was correctly diagnosed with Sjogrens. It took about 17 doctors until I found the right one. I am in extreme pain 24/7 and my entire life has been disrupted. My family doesn't understand me and the only person who cares besides my doctor is my boyfriend, but the disease affects both of us. I cry endlessly because I just want to live a normal life, but nothing I do seems to take the pain away. Everyone thinks I look fine, but they don't understand the pain I am feeling along with all of the other terrible symptoms. I can't work and am going to school online because of the pain. I have a 3 year old chocolate lab named Hershey and without her and my boyfriend I wouldn't want to be here. I just want to be friends with someone who understands what it is to be me. I don't have any other real friends.
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E-Pal number 2007-005
Name: Sandy
Gender: female
Age: 44
Lives in: Pennsylvania, USA
Years with Sjogren's: Diagnosed 5 years ago.
About Me: I am a computer graphic artist, working full-time (which is a struggle with SS); married 23 years with 5 kids (ages 21, 19, 18, 7, 5); I enjoy flower gardening (annuals and perennials, recently I've experimented with roses; I like to draw and paint but rarely get a chance to do so. I love taking rides into the country to see nature and beautiful scenery.
I am looking for somebody that struggles with some of the same issues that I do: neuropathy, brain fog and head pressure, fatigue, mental dullness, random circulating pains; I want to stay upbeat as much as possible. I would love to hear how others cope and try to live as normally as possible! Please share your experience with me.
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E-Pal number 2007-003
Name: Joyce
Gender: female
Age: 50
Lives in: Oregon, USA
Years with Sjogren's: 1
About Me: It would be nice to correspond with others who have this autoimmune disease and to see how they cope with family, work, and regular life. Also how to communicate well with the multiple Dr.s that are now taking care of me. I am employed with a job I love, and have a very active family. Love the outdoors, skiing, travel, books, and life!
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E-Pal number 2007-001
Name: Donna
Gender: female
Age: 39
Lives in: Tennessee, USA
Years with Sjogren's: 10 months
About Me: I am a single mom with two teenagers, three dogs, and two cats. I ship hazmat for a living. I love kids, animals, and life (most of the time). I was diagnosed in March with SS and jumped in at the deep in with ALL the yucky symptoms. Used to being very active and very focused, although currently struggling to be either. Looking for a friend who’s looking for a friend.
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E-Pal number 2006-140
Name: Kristin
Gender: female
Age: 49
Lives in: Idaho, USA
Years with Sjogren's: 1+
About Me: I am a single mom (was married to a doc for 20 years), already diagnosed with MS, Fibro, Ehlers-Danlos, severe Sleep Apnea, heart problems, as well as pulmonary ones, and a host of other joint complaints. I am an avid reader, I write a blog on myspace, and love movies and brain play, but need a "pal" to help me through this latest disease that was added to my collection. I'm scared - I have two kids who rely on me to be my best, and with vision problems, vertigo, pain and fatigue, that's hard - help? I've lived with the symptoms for some time, but was only recently confirmed. I am a need-to-know person who believes in science, not homeopathic medicine (contrary to my ex's wife). For my personality, think Gilmore Girls.
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E-Pal number 2006-134
Name: Kimberly
Gender: female
Age: 26
Lives in: Canada
Years with Sjogren's: 3
About Me: I am a 26 year old woman who is fighting Sjogren's Syndrome, CREST syndrome, Celiac disease, Reflux disease, and Reynaud's phenomena. I was diagnosed a year ago but have been suffering for about 10 years. I am very tired, very frustrated, and confused as to what I have to do in order to have a good life. I am a graphic designer, illustrator and dog lover. I try to make the most out of what I have. I have a serious boyfriend who loves me but we are both struggling with my health and the idea of me being able to have and care for a baby. I have seen so many doctors I cannot even recall how many anymore. The majority of them did not believe me and said that I had a mental problem even though test results were positive. Some days I just want to scream and others just sleep. I am at a loss as to what I should do. People in my life do not understand. They think I look good, therefore, I am good. I am so sick of feeling isolated and alone in dealing with my health. I would love to chat with someone who is just as frustrated as I am. Look forward to hearing from you.
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E-Pal number 2006-133
Name: Michelle
Gender: female
Age: 30
Lives in: Ohio, USA
Years with Sjogren's: possibly 7+, just diagnosed though
About Me: I've always thought of myself as strong, but I'm looking to others who have SS to help me find ways to cope with my ability to do less. I was a runner and athletic person before this, and now I struggle to keep the extra pounds off. I would like to have kids, but I worry about my ability to take care of them. I may also have SLE. I welcome feedback...especially positive, uplifting, but even the tougher things. I like to make jewelry, listen to music, and play with my dog. Looking forward to having an e-pal!
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E-Pal number 2006-132
Name: Lesley
Gender: female
Age: 50
Lives in: Auckland, New Zealand
Years with Sjogren's: 0 under investigation
About Me: Hi I'm a part time primary teacher, divorced and have 2 wonderful daughters 21 and 19. Ten years ago I was diagnosed with cfs which I have have handled well. Now I am being investigated for Sjogrens. Bloods are negative but Schirmer test was low. I have dry mouth and sensitive parotid glands. I love most things but this has thrown me into a bad depression (which is being treated...more dry mouth!!) Would love to correspond with others support and insights into this.
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E-Pal number 2006-127
Name: Ginger
Gender: female
Age: 46
Lives in: Minnesota, USA
Years with Sjogren's: 6
About Me: Learned I had Sjogrens few years back after a car accident. Have been dealing with fatigue, body aches, eyes and mouth, and digestive problems. Love animals, being outside. Try to get thru the days but get depressed with these problems with the body.
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E-Pal number 2006-124
Name: Kerry
Gender: female
Age: 30
Lives in: Canada
Years with Sjogren's: 0, boyfriend has it
About Me: Hi there,
I am a little different as I do not have Sjogrens, but my boyfriend does. I need to understand his disease a little better, as I think it would enable me to help him more. We often have conflict over the fact that he is unable to do a lot of things. I really love him, but have a hard time understanding what this disease is really like. I would love to talk to other people about what it is like, in particular the fatigue, because this seems to be the biggest problem for him. I also would love to talk to other people who have loved ones with Sjogrens. I find it is difficult for me or him to find people to talk to. He was diagnosed at 15 years old, which I understand is extremely rare....anyone else? He is 27 now.
Kerry - looking to understand better.
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E-Pal number 2006-123
Name: Cheryl
Gender: female
Age: 50
Lives in: 
Years with Sjogren's: 9
About Me: Hi! I was diagnosed with SS in 1997 and have since added autoimmune hepatitis, fibromyalgia, hypothyroidism, lichen planus and degenerative back disease to my illness list. I have good days and bad days and continue to search for therapies (meds, exercise, etc.) to help me have more of the good days. I have found faith, good friends, family and especially good doctors are critical to my success and I would love to hear from others coping with the ever changing symptoms of autoimmune disease. I am 50 and widowed. My daughter and 7 year old grandson live with me. I also left a 25 year human resources career last year because of my illnesses and I'm trying to learn to cope with all of these changes. Would love to hear from others who are "coping" too!
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E-Pal number 2006-115
Name: Gayle
Gender: female
Age: 54
Lives in: Florida, USA
Years with Sjogren's: 4, probably more
About Me: I am 54 years old, happily married with 3 terrific grown kids and 1 beautiful grandson. I try and swim as often as possible or at least float, I sew and love to read. I find my life has changed a great deal in the last few years. I was recently diagnosed with Sjogrens and ra. Actually the rheumy changes his mind about my diagnosis quite often. I am looking for a friend to email who would like to exchange ideas on feeling better, discussing different meds, and how they are coping with their health issues and also ideas on dealing with doctors. I think this epal idea is wonderful. I look forward to meeting and having a new friend with so much in common. Talk to you soon I hope. Gayle
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E-Pal number 2006-111
Name: Alesa
Gender: female
Age: 36
Lives in: Texas, USA
Years with Sjogren's: 1
About Me: I was just diagnosed with SJS although I have had symptoms over the past 8-10 years. I have severe dry mouth and dry eyes....LOTS of dental work and no contacts now. As Mommy to 2 young girls (9 and 2), I am hoping to learn as much as I can about the disease. I'd like an e-mail buddy to swap stories re: symptoms/treatments. I love walking (I'm doing the Breast Cancer 3 Day in October!!), scrapbooking, and my friends and family.
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E-Pal number 2006-110
Name: Joan
Gender: female
Age: 52
Lives in: Alabama, USA
Years with Sjogren's: 13
About Me: Greetings from Mobile, AL! I have mild problems with dry mouth/dry eyes but have experienced extremely painful flares of parotid gland swelling which pressed on nerves in my face - this went on for almost 12 years off and on. When this happened, I just had to wait it out on pain pills. I was dx with Sjogren's from a lip biopsy back in my late 30's.
About a year ago, I found a wonderful new rheumatologist (Tom McGee) that knew alot about SS and he said I needed to be on Plaquenil and Neurontin, not loritab for pain and steroid shots. After getting a checkup, I got on both and life has been SO SO much better. Swelling in my face is all but a distant memory. I hope I can help someone else by listing myself on this website. I can listen and be a friend and offer encouragement and hope.
Hobbies: love to read, walk, member of Master Gardeners, play w/ our Westie named Buddy (he's 6). Have been married 33 years to the same great guy (Kenny). We are both very active in our church (Christ United Methodist). God bless! Joan~
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E-Pal number 2006-108
Name: Faye
Gender: female
Age: 65
Lives in: Louisiana, USA
Years with Sjogren's: 4
About Me: I just turned 65 and was so looking forward to my life as a retired person. I wanted to work until 65 but had to give in at 62 due to my lack of energy to continue and do a good job. I was always very active and enjoyed life to the fullest. Was diagnosed 2 years ago finally. Have been sick for longer. Will talk to anyone who can give me more details.
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E-Pal number 2006-107
Name: Lynne
Gender: female
Age: 58
Lives in: Northern Territory, Australia
Years with Sjogren's: 4
About Me: I am married 2 grown children 6 grandchildren and lots of pets. I was diagnosed with SS around 4yrs ago but a very long history of other illnesses including 40+ operations for diseased sinuses, because of the length of time it took for me to get a correct diagnoses I have also developed a lot of other problems, I would love to hear from another SS sufferer.
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E-Pal number 2006-104
Name: Cathy
Gender: female
Age: 44
Lives in:
Years with Sjogren's: 4 months
About Me: Hi I have been diagnosed recently. Currently, I am suffering mainly from a dry mouth and sinus. Just discovered that I have bronchitis and Asthma 2 weeks ago. Very scared when I look at the terrible developments in the health of some patients in the internet. Life looks bleak and I really do not know what the future is in store for me or if I have the courage to push on.
I hold a Senior Marketing position and I love singing, traveling and antiques. I am finding a lot of solace in Buddhism.
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E-Pal number 2006-103
Name: Loraine
Gender: female
Age: 52
Lives in: UK
Years with Sjogren's: 5/6
About Me: I am married with no kids but lots of pets. I work in my husbands business so can choose when to work luckily, I would find it impossible to hold down a job. I would be particularly interested in hearing from other ss sufferers who have also had breast cancer, which I had in 1999. I was diagnosed with ss almost by accident in 2005 after numerous tests for persistent abdominal pain (mostly looking for cancer). I have dry eyes and mouth, frequent mouth sores, RA, gastric/bowel problems, chronic heartburn, fatigue, on and off depression. A real barrel of laughs. I feel like screaming sometimes when people say but you look so well! If you don't have ss you can't understand the frustration of feeling grotty most of the time and not being able to make plans just in case its a bad day. I would like contact with others who do know what I am living with for mutual support.
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E-Pal number 2006-099
Name: Bev
Gender: female
Age: 47
Lives in: Temporarily in NSW Australia - return to UK 2007
Years with Sjogren's: 5+
About Me: Currently two years into a 3-4 year posting in NSW before returning to Cambridge, UK sometime during 2007. Would love to hear from anyone in a bid to keep mutually cheerful! I have a small network of well meaning friends in Australia but no one really understands like a fellow sufferer so I am happy to offer support and compare notes. Diagnosed with various forms of Lupus since 1988 and SS since 2001 so it has been a bit of a long struggle (as it would appear to be for most of us). My husband and I have two young adult children at home in UK - one at Uni, the other just venturing into London for his first real job having graduated this summer.
Don't have a great deal of energy for activities since giving up work in 2003 but I try to keep young at heart and love fashion, music (the stuff our kids like!), design, photography and have even attempted a bit of contemporary artwork.
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E-Pal number 2006-098
Name: Maureen
Gender: female
Age: 55
Lives in: South Carolina, USA
Years with Sjogren's: 5
About Me: I was diagnosed with MCTD (Lupus, Sjogren's) about 6 years ago. I have many symptoms of both that "overlap", but the Sjogren's presents as dry eyes, mouth, digestive system...everything!!! mouth sores, enlarged parotid glands and lymph nodes, peripheral neuropathy, fatigue...I take Evoxac for the dry mouth, plaquenil and Mobic. I am an RN working one day a week, married with a combined family of 5 children. 3 grandchildren. I love animals, painting-drawing-writing. would love to hear from someone with similar physical problems to share how you deal with and "conquer!"
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E-Pal number 2006-097
Name: Marcia
Gender: female
Age: 54
Lives in: Florida, USA
Years with Sjogren's: 20
About Me: I would like someone with whom I can trade experiences, helpful tips, and encouragement. I live at a big lake and enjoy boating and traveling. Reading is also a love, but has been more difficult as the dryness progressed. I am a CPCU and former corporate trainer.
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E-Pal number 2006-096
Name: Joyce
Gender: female
Age: 50
Lives in: Florida, USA
Years with Sjogren's: just diagnosed
About Me: I am an educator. I am looking for other people with this condition to learn how to live as fully a life as possible.
I am married and have 5 grown children (3 of my own and 2 step-children) 5 grandchildren. I enjoy reading, walking, swimming, computer stuff and crafts.
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E-Pal number 2006-094
Name: Kathleen
Gender: female
Age: 49
Lives in: Rochester, New York, NY, USA
Years with Sjogren's: Waiting for diagnosis
About Me: Absolutely love to travel, especially to the New England States and outside the country. Love horses and dogs and walks by the lake that I live nearby. Have to wait until November 2006 to get in to see the very popular Rheumatologist where I live. Will be seeing my primary care soon, to enlist some help. Started dry eyes weeks ago and slight dry mouth and dry cough. No fatigue that everyone talks about. Also have some slight female irritation. Would love to hear from anyone who would like to write.
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E-Pal number 2006-092
Name: Valeria
Gender: female
Age: 23
Lives in: Pennsylvania, USA
Years with Sjogren's: 8
About Me: I was only around 16 when I was diagnosed with Sjogren's syndrome. I have a 9 mo. old girl that I can thank god that she is here due to complications with my pregnancy. Just looking to talk with someone who would like to talk and listen to someone else with similarities that don't mind talking about it.
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E-Pal number 2006-091
Name: Deborah
Gender: female
Age: 46
Lives in: California, USA
Years with Sjogren's: 1
About Me: I was finally diagnosed with SjS 1 year ago but had the symptoms for at least 5 years. I have a 7 year old daughter. I enjoy doing crafts, reading- when my eyes let me. Other hobbies were hiking, camping, traveling. I look forward to hearing from people who have this cruel disease.
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E-Pal number 2006-090
Name: Valerie
Gender: female
Age: 47
Lives in: Wisconsin, USA
Years with Sjogren's: 7
About Me: I am a wife and mother of three wonderful daughters, a naturalist and avid outdoorsy person and a volunteer. Recently diagnosed with Sjogrens after years of vague symptoms. I'm looking for comfort and tips on living with these wacky and unpredictable symptoms. My goal is to spend more time doing things I like to do, IE. gardening, exercising, skiing, boating, traveling, reading and less time complaining!
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E-Pal number 2006-089
Name: Christina
Gender: female
Age: 35
Lives in: Greece
Years with Sjogren's: Feb 2006
About Me: I'm a Dutch girl living in Greece. Since Feb this year I have all sorts of problems with my health and my rheumatologist thinks it's ss. Going through many websites, I'm convinced he's right and I also think I've had it for a number of years already without realizing. I'm still puzzled about the whole thing. why, how, what now?!? I take 200mg plaquenil per day at the moment. I'm though not too keen on medication. I hope there are others out there that can help me find alternative ways to improve. I stumbled onto 'body-mirroring' and the meditation helps me a lot. I'm a positive person and like to email with other positive ss-patients. My slogan "life goes on" (okay, I now, it doesn't always feel that way!!!!)
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E-Pal number 2006-087
Name: Jeanine
Gender: female
Age: 57
Lives in: Michigan, USA
Years with Sjogren's: 11
About Me: My doctor diagnosed me with high rheumatoid factor. I got a rheumatologist and said I have mixed connective tissue disease. Then the syndromes came on; severe Reynaud's, then scleroderma and now Sjogrens. I have lost teeth, had work on my eyes. Really hate the dry mouth and would like to talk with each and everyone of the sufferers. I nearly died in December my platelets dropped down to 2000 being we need 150,000 I was lucky I got in when I did. I had a rash and my rheumatologist made me get a blood test. Anyone else have this problem? Write me.
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E-Pal number 2006-086
Name: Lia
Gender: female
Age: 56
Lives in: Maine, USA
Years with Sjogren's: 6
About Me: I wonder if anyone else is experiencing extremely enlarged parotids, and of any positive experiences with Sjogrens clinics. I expect my next step will need to include a specialist, and am uncomfortable pulling a name out of the hat. I am using several alternatives to dry eye, mouth and fatigue with good results, willing to exchange ideas.
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E-Pal number 2006-085
Name: Edith
Gender: female
Age: 69
Lives in: California, USA
Years with Sjogren's: unknown
About Me: My name is Edie. I am an artist and enjoy all kinds of crafts. My life is being limited by this illness, and continues to restrict me more and more as the symptoms worsen. I have never met another person with Sjogrens and feel alone. I am looking for someone who relates to my situation, with whom I can share feelings and not feel so isolated.
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E-Pal number 2006-083
Name: Della
Gender: female
Age: 53
Lives in: Pensacola, Florida, USA
Years with Sjogren's: 3
About Me: I was diagnosed with Sjogren's in 2003. I retired last year. I read allot about Sjogren's and monitor my treatments closely. I have a good Rheumatologist, and a supportive husband. It is tough dealing with the changes in my life since I was always the "I can do it all" type of person. I think it would be nice to talk to someone in the same situation as me. I have Primary Sjogren's and CREST symptoms.
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E-Pal number 2006-082
Name: Sandi
Gender: female
Age: 52
Lives in: Tennessee, USA
Years with Sjogren's: 4
About Me: Presently dealing with Sjogren's, Fibro, Depression (surprise, surprise), and RA. Life is changing daily and very difficult to accept. Looking for someone close to my age who is experiencing this downward spiral. Interested in quilting, cross-stitch, and reading. Have become very limited in doing quilting and cross-stitch which is disappointing also.
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E-Pal number 2006-081
Name: Renae
Gender: female
Age: 33
Lives in: USA
Years with Sjogren's: 1 month+
About Me: Hi I have been newly diagnosed with SS but have had symptoms for about 4 years now. Though I work in the medical field I had never heard of SS. I am still doing a lot of research but would like to hear from people that live with it everyday and not some doctor who is clueless. :) Thanks for the input!

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E-Pal number 2006-079
Name: Shannon
Gender: female
Age: 22
Lives in: Pennsylvania, USA
Years with Sjogren's: 13 months
About Me: Hi, I have a fairly new diagnosis of Sjogren's along with a Mixed Connective Tissue Disease that has not been figured out yet. I have many books on this disease but would like to speak to other sufferer's. I have been to several different Rheumatologists and have recently found one that I am happy with. I've also tried many different medications and have now been on the same one for 2 months with some success. I am currently a Medical Assistant but I am also a Nursing student, which can be very stressful but I've learned to pace myself. I would love to chat with anyone that has some spare time!
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E-Pal number 2006-075
Name: Karen
Gender: female
Age: 47
Lives in: Connecticut, USA
Years with Sjogren's: 7 months
About Me: Hi! I am a Mom of twin boys and an RN. Just diagnosed with Sjogren's.
Did not even know I was ill at the time. Had a routine Chest X-ray and found multiple pulmonary nodules. Had an open lung biopsy done before Christmas, they thought it was lung cancer. Thank God it was not! It is Sjogren's...primary. I have the dry eyes and mouth and a positive lip biopsy. Now looking back I really have not felt like myself for the past 2 years but I am good at not giving in and noticing things. I have been on Prednisone for the past 3 months...hate the side effects.
May be going to Imuran or Rotuxin. Not sure yet. Anyone out there with similar pulmonary problems?
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E-Pal number 2006-074
Name: Sylvia
Gender: female
Age: 57
Lives in: not disclosed
Years with Sjogren's: over 20 years
About Me: I have Rheumatoid Arthritis and have had it since juvenile about age 11. It has been a struggle I am now confined to a wheelchair and have tried all kinds of drugs and medications, later I developed Sjogrens syndrome which no doctor knew what I had at that time so I suffered for about a year before it finally had a name. After that I went to all this eye doctors and they tried all sorts of things but nothing really helped although one of the things that helped was a vaporizer at night but I used to cry from all the pain all the time.
Recently I found a nutrition Dr. that has helped me a whole lot with the pain of arthritis and also with my painful dry eye problems if interested email me and I'll tell you about it.
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E-Pal number 2006-072
Name: Julie
Gender: female
Age: 43
Lives in: Idaho, USA
Years with Sjogren's: unknown
About Me: I am a student practical nurse. I have had a lip biopsy that was inconclusive. I have dry eyes, dry mouth, dry everything. I have had gallbladder removed, have irritable bowel, neck pain, migraines, edema, palpitations and the list goes on. I am 43. Love gardening, riding the harley with my husband of 23 years, have 2 great kids. I am looking for some support for the feelings and pains. Thanks, Julie in Idaho
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E-Pal number 2006-065
Name: Kris
Gender: female
Age: 39
Lives in: Tennessee, USA
Years with Sjogren's: 5
About Me: I'm a drug and alcohol counselor and have been one since about the time I was diagnosed with sjs. I'm married with no children. We decided not to when I got sick do to all the meds I take. We have 4 wonderful cats. I enjoy reading, sports, spending time with family and friends. I would like an e-pal who is interested in similar interests or who just wants support as I do.
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E-Pal number 2006-063
Name: Brenda "Gail"
Gender: female
Age: 52
Lives in: Nova Scotia, Canada
Years with Sjogren's: not sure
About Me: Hi, I was diagnosed with Sjogren's 2 yrs. ago but fully enjoy life as
it is! Have 6 indoor cats, an aquarium and love nature and all critters. Enjoy reading, quiet times... not much for wild parties. I do enjoy music and dancing though. I'm very kind and considerate of other people and would expect the same. Don't know what to say.. Lacy
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E-Pal number 2006-062
Name: Kira
Gender: female
Age: 25
Lives in: Indiana, USA
Years with Sjogren's: 15
About Me: Hi! I would like an e-pal who is close to my age (20s) and preferably has primary Sjogren's. I was diagnosed with primary Sjogren's 6 years ago but have had symptoms since age 10. My symptoms are fairly mild. Even after 15 years am still learning to live with the disease and accept that I have something wrong with me - I only very recently started seeing an ophthalmologist and a rheumatologist. I would also be happy to correspond with any parents of kids with Sjogren's since I developed it at such a young age.
Thanks!
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E-Pal number 2006-061
Name: Ann
Gender: female
Age: 50
Lives in: Washington, USA
Years with Sjogren's: 2
About Me: Hi to all my fellow SS club members! I am looking forward to hearing from others who are living with Sjogren's Syndrome. I am married and have three kids ages 20, 21, and 24. I love dogs, cats, gardening, travel, and reading. I am an RN, and resigned my job as a nurse educator two years ago. So far Sjogren's has "blessed" me with sicca symptoms, severe fatigue, hypothyroidism, peripheral neuropathy, chronic parotid enlargement, and IBS. I would love to make new friends to understand and share the struggles that Sjogren's disease brings.
~~~~~
E-Pal number 2006-059
Name: Joan
Gender: female
Age: 66
Lives in: Nova Scotia, Canada
Years with Sjogren's: many
About Me: My Sjogrens has cause peripheral neuropathy to develope and is attacking my muscle causing weakness to develope. I am a retired nurse who was once very active and loved to travel... I am interested in crafts and do crocheting and knitting.. I also have MdDDS for 12 yrs now. I would like to find someone who is living with this condition... the Sjogrens I mean.
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E-Pal number 2006-057
Name: Amy
Gender: female
Age: 43
Lives in: USA
Years with Sjogren's: Still getting a diagnosis
About Me: I have a special needs girl, 9 and a boy, 5. I work part-time and have a spouse that works so much he's barely home. We also have huge marital problems. I have been having symptoms for years and finally an Adrenal crisis early this year which has put me in a tailspin. I would love to talk with someone who understands what it's like to have no support from their spouse as well as someone who can empathize about mourning the loss of our health.
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E-Pal number 2006-056
Name: Moira
Gender: female
Age: 42
Lives in: United Kingdom
Years with Sjogren's: 5
About Me: Hi there, married, 1 child, read a lot, enjoy exercise, work in a primary school, love cats, looking for someone who knows how grotty we feel even though we look fine most of the time.
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E-Pal number 2006-054
Name: Patricia
Gender: female
Age: 47
Lives in: North Dakota, USA
Years with Sjogren's: 16
About Me: I am living with SS and find the progression to be slow but am interested in any ideas of what the future will hold. I was diagnosed in 1990 on Aprils Fool day, thought it was a joke. I went directly to Mayo Clinic to no avail. I have found some wonderful help with keeping eyes moist. Mouth dryness just began. Would like to hear from anyone who has similar circumstances. I have no Arthritis but have leg tingling. I am wondering if I am the only one in my State to be afflicted.
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E-Pal number 2006-051
Name: Uma
Gender: female
Age: 48
Lives in: Texas, USA
Years with Sjogren's: not sure
About Me: I was diagnosed with Sjogren's just a couple of months ago. I started having symptoms of dry eyes occasionally and dry mouth in the morning. My left arm is stiff when I wake up in the morning. My parotid gland also swells up and down over the past 6 months. I also was diagnosed as having Thyroid. I have ANA and SSB positive - I believe I had these blood titers over 10 yrs ago but no diagnosis was made or I just did not give the Dr's a chance. I am ready to face the reality and need to talk to someone who have Sjogrens and what the future entails for me. Thanks for listening. Umat
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E-Pal number 2006-049
Name: Lizzie
Gender: female
Age: 44
Lives in: Sydney, Australia
Years with Sjogren's: 1
About Me: Hi, I've been told I've got SS, yet have no blood markers, pain or fatigue (apart from lack of sleep!). However I do have deteriorating dry eyes, nose and mouth. I am a lawyer with two school age children, and looking to correspond with someone who also has just mainly dryness as a problem and whose focus is keeping a busy career and family life as normal as possible.
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E-Pal number 2006-048
Name: Jackie
Gender: female
Age: 44
Lives in: New Jersey, USA
Years with Sjogren's: 3
About Me: I was diagnosed with Sjogren's about 3 years ago, although this disease is still a mystery to me. There are plenty of days I feel fine, and then days I feel so bad. It's depressing not knowing what the future holds. I'd love to correspond with others who deal with this disease. I'm married with two teenage children and work full time. I also take online classes - working on a degree. I'm looking forward to hearing from others.
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E-Pal number 2006-047
Name: Michelle
Gender: female
Age: 35
Lives in: UK
Years with Sjogren's: ? dx in Feb ‘06
About Me: Hi. Not sure how long I have had sjs but dx in feb, still trying to get my head round it and understand it all, have the dry eyes mouth, swollen glands in neck regularly, anxiety, depression, and pain mainly in right knee and right hand, pins and needles. would really like e-pals to talk to regularly to help each other thought it all. Chell.
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E-Pal number 2006-046
Name: Francine
Gender: female
Age: 44
Lives in: Illinois, USA
Years with Sjogren's: 2
About Me: I am looking for someone to talk through this disease. I have extreme fatigue. the dryness is not so bad - yet. My muscle and joint pain inhibits me from daily activities. This can be very difficult with a family and spouse. I am trying to cope with working (part-time) and daily household activities. People see me as a healthy individual but they don't know the half of it - this is very discouraging at times. I would like to talk to someone who shares my same experiences.
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E-Pal number 2006-045
Name: Jean
Gender: female
Age: 45
Lives in: 
Years with Sjogren's: 3 months diagnosed
About Me: I was diagnosed with Sjogrens in January, yet have experienced symptoms for a few years and I had no idea what they were. So far things aren't too bad, just real dry eyes and mouth. Now that I am diagnosed I have a great doctor to help me and there is no more damage at this point. But the whole road ahead is intimidating and the prognosis for the rest of my life. There is a support group where I live, yet due to my schedule and some health issues I haven't been able to attend. It would be nice to have a contact.
~~~~~
E-Pal number 2006-041
Name: Barbara
Gender: female
Age: 46
Lives in: Illinois, USA
Years with Sjogren's: 11
About Me: I have had Sjogren's for the past 11 years. I would like to email someone who has had fairly successful treatment, I have a great deal of fatigue...it is the prevailing symptom. I am on Plaquenil and have had a partial response. Just would like to communicate with someone else who is going through this and is feeling better.
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E-Pal number 2006-039
Name: Nita
Gender: female
Age: 50
Lives in: Melbourne, Australia
Years with Sjogren's: just diagnosed
About Me: Hi just been dxs with sjs but have been sick for years recently gave up part time job due to fatigue depression etc. This is all new to me and am trying to find out as much as I can am so tired and find it hard to get through a day. I haven't found any meds for my eyes with much relief and mouth as yet. I have twin boys 22 and daughter 28 and a wonderful hard working hubby but would love to correspond with a friend that knows how I'm feeling had lots interests but hard at moment to enjoy anything just trying to survive a day at a time right now love to hear from you. regards, Nita
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E-Pal number 2006-036
Name: Corrie
Gender: female
Age: 35
Lives in: California, USA
Years with Sjogren's: 13
About Me: Hi! I was diagnosed with SS right after the birth of my 14 year old son. I worked full time for a medical corporation until about a year and a half ago when my doctor put me on disability. I am tired all the time and sick a lot. I have been on methotrexate and prednisone but have decided against those for right now (too many side effects). I have never met anyone with SS and would really like to talk to someone. It's so hard for my family to understand. I feel like I am falling apart.
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E-Pal number 2006-033
Name: Rebecca
Gender: female
Age: 36
Lives in: West Midlands United Kingdom
Years with Sjogren's: 6
About Me: I have suffered with fatigue, headaches, pins and needles with numbness to hands and feet, aching muscles and joint pains for 6yrs. 2yrs ago I suffered with dry eyes and now I am finding the dry mouth a real problem. I am undiagnosed as yet but started on salagen this week from my GP for the dry mouth. I am now finding out about Sjogrens and it seems to fit my symptoms.
I am also a registered nurse - it is weird how many of us there are on this E-pal list. Anyway, I work in theatres but have had to be on admin duties the past 2 years due to the fatigue. I would like to hear from others with similar problems for support and friendship.
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E-Pal number 2006-031
Name: Kathy
Gender: female
Age: 52
Lives in: 
Years with Sjogren's: recently diagnosed
About Me: I was just recently diagnosed and would like to talk with someone who understands what this feels like. I am a registered nurse and my hobbies include various arts and crafts, gardening, and working on projects around my house.
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E-Pal number 2006-030
Name: Lisa
Gender: female
Age: 37
Lives in: Georgia, USA
Years with Sjogren's: 8+
About Me: I am a 37 year old female. I was diagnosed with ss approximately 8 years ago. I have a very supportive husband and 3 wonderful boys. I find that they are many days I am unable to hold down my full time job and keep up with 3 boys. Due to my medical condition my physician wants me to cut my work hours back, possibly stop working. I am very depressed, but know that I need to try to keep my condition stable by following the doctors advice. Have high blood pressure, chronic kidney disease, arthritis, chronic fatigue and more problems all due to the Sjogren's. I was just wandering if anyone else was going through this and would like to share information with me. Would like to be able to view others opinions and share my strengths also. Remember though to stay positive and do not give up even though your bad days may out number the good days!
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E-Pal number 2006-029
Name: Gill
Gender: female
Age: 37
Lives in: NSW Australia
Years with Sjogren's: 3
About Me: I have been sick for the past 3 years with joint and muscle pain, fatigue, back pain and what seemed to be permanently swollen glands. I have just been diagnosed with Primary Sjogrens and am due to discuss treatment and management next week with specialist. People find it hard to understand why I'm so tired all the time. I live a relatively normal life and train in self-defense twice a week.
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E-Pal number 2006-027
Name: Trish
Gender: female
Age: 51
Lives in: United Kingdom
Years with Sjogren's: Approx 7
About Me: Happily married, one son, two lovely grandsons aged 3 and 9 months. Used to be an Assistant Company Secretary until April 05. Unable to work due to Sjogrens as the fatigue has been so debilitating. Looking for someone I am able share experiences with, as in the UK support is limited. Sjogrens has dramatically affected the quality of my life and it would be so comforting to have someone who understands.
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E-Pal number 2006-026
Name: Kelly
Gender: female
Age: 42
Lives in: Canada
Years with Sjogren's: at least 5 not official
About Me: I am a single mom of two teenagers. finding the challenges of dealing with SS, working and single parenthood .. a little hard at times.. I love flowers, old houses and second hand stores. I really like to garden( when my body allows me to), write poetry and to find inspiration in the smallest of things. At present trying to figure out what my own limitations are.
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E-Pal number 2006-023
Name: Louise
Gender: female
Age: 51
Lives in: USA
Years with Sjogren's: 1
About Me: I was diagnosed with Lupus and Sjogrens last year (2005). Before that I had thyroid cancer (2004). I had both of my thyroid taken out. I seem to have more problems with the Sjogrens. I have both dry eyes and mouth plus joint pain on my shoulder blade. I also have some dry cough that every time I cough it closes my windpipe and I can't breath for a few seconds this is scary. I went to the doctor ( saw 3 different doctor's and they look at me like I am crazy . I would love to know if anyone out there have this problem.
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E-Pal number 2006-021
Name: Nicki
Gender: female
Age: 31
Lives in: California, USA
Years with Sjogren's: 5+
About Me: Hello, I am mother of three who works full time and has lupus as a primary disease and Sjogrens as a secondary but lately I feel as if my Sjogrens has taken over. I am so tired of being sick. I don't let my diseases take over ( I don't have time) I am very active, I love to play sports!
I would love to chat with another female who is going through the same things & can relate so that I don't feel like such a hypochondriac.
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E-Pal number 2006-020
Name: Teresa
Gender: female
Age: 51
Lives in: B.C. Canada
Years with Sjogren's: 1 month
About Me: I have been diagnosed with SS only one month ago. I am a registered nurse working NICU. There are several aspects of my job that I am having to deal with that effect my eyes like standing under radiant warmers for hours at a time. Its brutal on already super dry eyes. I would really like to hear from someone who might understand the nature of my work and who may have found ways to deal with the challenges this type of work has on SS.
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E-Pal number 2006-018
Name: Nancy
Gender: female
Age: 67
Lives in: Washington, USA
Years with Sjogren's: 6 months
About Me: Not yet diagnosed. Doctors blame lots of causes for my symptoms. Need to chat with others - also need to find a doctor who specializes in Sjogren's or at least is familiar enough to diagnose and treat. Avid reader both print and audio. Love gardening and the web.
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E-Pal number 2006-014
Name: Marie
Gender: female
Age: 58
Lives in: England
Years with Sjogren's: having tests done
About Me: Hi I have a blocked saliva gland but because of having rheumatoid arthritis and being diabetic...I'm being tested for Sjogrens ..trying to get all the info I can...about it .can anyone please help?
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E-Pal number 2006-012
Name: Donna
Gender: female
Age: 65
Lives in: USA
Years with Sjogren's: 3
About Me: I am a 65 year old retired lady living in Utah. I am a military retiree's wife. I have lived all over the US and Europe, Italy and Germany. My passion is gardening and travel. I would like to get to know someone with Sjogrens and trade information on this disease. I believe my grandmother had Sjogren's also.
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E-Pal number 2006-011
Name: Mary
Gender: female
Age: 59
Lives in: Wisconsin, USA
Years with Sjogren's: 5
About Me: Hi, I'm Mary from Wisconsin. I am 59 yrs. old. I have Sjogren's and would like to talk with and share hard times with someone. I am a good listener and will share what I know about this disease.
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E-Pal number 2006-008
Name: Mary
Gender: female
Age: 52
Lives in: Springfield, Oregon, USA
Years with Sjogren's: 4+
About Me: I have had the symptoms of Sjogrens for a number of years but have just been recently diagnosed. My dentist was the one to suggest that I have the blood tests. They came out very positive, so much so that the Rheumatologist didn't even have any question to what it was. I am presently working full time. My family doesn't really understand what it is. They still think it is partially in my head and that if I try hard enough to ignore the symptoms that it will just go away. I am looking for someone to correspond with that understands some of the things that are going on.
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E-Pal number 2006-002
Name: Daniel
Gender: male
Age: 40
Lives in: Oregon, USA
Years with Sjogren's: 5
About Me: Diagnosed end of 2005 with Sjogren's Syndrome after being hospitalized over & over for infected Parotoid glands. From week to week it would travel from left to right side. Severe pain. Also got painful dry eyes. After routine cat scan, Dr found Corneal Lesions. I also have RA and if anyone can relate, I would love to hear it.
E-Pal number 2006-001
Name: Shannon
Gender: female
Age: 34
Lives in: Louisiana, USA
Years with Sjogren's: 2
About Me: I was diagnosed 2 years ago. I am a registered nurse and work in the NICU. I am married with twin 15 year old boys. I am looking to have someone to talk to because I do not know anyone with Sjogren's and I feel like allot of times when I tell others how I feel they think I'm lazy, or acting as a hypochondriac. Some days are great, some days are really bad and it makes me depressed and lonely because I don't want to lay down all day. I want to be able to go do things.
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E-Pal number 2005-121
Name: Elaine
Gender: female
Age: 46
Lives in: Scotland
Years with Sjogren's: 20
About Me: I am married with 2 teenagers. Work as a secretary in a school. I enjoy walking, theatre, reading and traveling. Would like to get in touch with someone who appreciates what it's like to live with this condition.
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E-Pal number 2005-114
Name: Sarah
Gender: female
Age: 40
Lives in: UK
Years with Sjogren's: 2
About Me: Hello. I would love to chat with someone who knows exactly how I feel, constantly tired, no energy and achy. I am single and have two teenagers, sometimes life can be very hard and other times I feel great, difficult to plan anything as I have to play it by ear most of the time.
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E-Pal number 2005-111
Name: Elaine
Gender: female
Age: 45
Lives in: not divulged
Years with Sjogren's: 1 year
About Me: I work in a lunch room at a high school. I also work at the concession stand in winter during hockey games and during summer during baseball games. Have been married for 28 years. We have 2 cats. Which we got in Feb. after losing our other one. I love to read, do crafts, sew, stamp on cards. pen pals, cook, go out to eat. meet new people. I have been diagnosed with other arthritis as well and would just like to be able to talk to someone who has the same symptoms as me. Elaine/weebill
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E-Pal number 2005-108
Name: Christa
Gender: female
Age: 24
Lives in: Pennsylvania, USA
Years with Sjogren's: 4
About Me: Well, I'm 24 years old, and was dx'd with Sjogren's at age 20. I'm pretty active at this point...I give tours at Fallingwater and that keeps me busy. I also love music and enjoy going to live shows. I would like an E-pal who's kinda close to my age, because I don't know anyone else who has Sjogren's and would like someone that I can relate to. Hope to hear from ya. :-)
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E-Pal number 2005-095
Name: Terri
Gender: female
Age: 53
Lives in: Illinois, USA
Years with Sjogren's: most of my life
About Me: Dx without positive results, could be lupus too. I used to be so active, artist, woodworker, seamstress, antique collector, re-finished furniture, made people out of pvc piping and sculpted faces, hands and feet. Late hubby owned a flooring business that I ran from the inside. Since sjs took over me completely 8 months ago brain fog sent in and I can't enjoy my hobbies any more. Pretty must confined to my house now except for visits to docs. Agoraphobic too, besides all my health problems from sjs or lupus. I really don't understand at lot of the medical terms but I'm trying everyday to learn something new. Once my disability papers are put through I will seek every doctor for all my illnesses. Would love to talk to someone like me fairly new to this sjs world. Share and learn together seems would be easier for me. lol-hope someone wants me. Love and prayers, Ter
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E-Pal number 2005-091
Name: Janice
Gender: female
Age: 45
Lives in: South Wales, UK
Years with Sjogren's: 26
About Me: I started to have infections in my eyes 26 yrs ago, was referred to a specialist who ran tests and diagnosed SS.
Over the years I have suffered from dry eyes and mouth, respirative and digestive problems, dry skin and extreme fatigue, and now, recent blood tests detect problems with my liver. Sometimes I wonder if the doctors are connecting these symptoms with SS, my dentist seems to know more about it than they do!
I have been married for 27 yrs, with 3 children and 4 grandchildren, I work, and have a fairly busy life until the fatigue gets to me, that is! Would like to chat to similar sufferers.
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E-Pal number 2005-090
Name: Sandra
Gender: female
Age: 42
Lives in: Texas, USA
Years with Sjogren's: 12
About Me: After being misdiagnosed numerous times, it was finally determined I had Sjogrens. The initial symptoms were dry cough and swollen parotid glands. This has changed over the years to include fatigue, muscle aches, dry mouth, dry eyes. I recently had tubes placed in upper/lower tear ducts, can feel little difference in level of moisture. I'm battling dental care now. I have severe pitting in the enamel and numerous ridges are forming at the gum line. I've had over 6 fillings this year to preserve my teeth. Dentist mentioned I may eventually need crowns on all my teeth. It was difficult to find a dentist who even knew how to treat Sjogren's or even what affect it had on dental wellness.
I do work fulltime. Had to stop yoga because of neck surgery, but found it to be the most helpful form of exercise. I enjoy boating and fishing with my family.
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E-Pal number 2005-088
Name: Rose
Gender: female
Age: 50
Lives in: New Zealand
Years with Sjogren's: 4
About Me: Hi. I was diagnosed with s/s when I developed dry eye syndrome My eyes are extremely dry using drops every 1/2 hour. Plugs etc do not seem to help. I also have rh/a but feel the dry eyes are my main concern for the moment as the rh/a seems to be under control taking cartier. I am happily married to Tony a very supportive husband and have four grown up children who are all studying at university. I lead a normal life, very busy at times, love travelling, music, reading and walking. It would be great to talk to someone who shares the same problems i.e. severe dry eyes as so many people have never heard of s/s.
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E-Pal number 2005-085
Name: Sandy
Gender: female
Age: 58
Lives in: California, USA
Years with Sjogren's: 1 month
About Me: I'm a real estate agent in the Napa Valley area, with 2 grown sons, 2 Boston Terriers, and a very supportive husband. Although, I've just been dxed, I've actually had Sjogren's for about 18 years. I thought I was going to die this past winter when Sjogrens affected my respiratory system along with a frozen shoulder. Then it affected my digestive system and I lost down to 93 pounds. I am now feeling very well. I have my good days and my rough days like everybody else. I am very interested in E-mailing with anyone that has the experience to help guide me along this journey. Although it can be rough, it has made me aware to take time to enjoy the special moments in life.
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E-Pal number 2005-083
Name: Sandra
Gender: female
Age: 39
Lives in: Texas, USA
Years with Sjogren's: 2
About Me: Hi, I've been dealing with Sjogrens Syndrome, Rheumatoid Arthritis now for 2 years. I've had a great deal of stress and fatigue over this illness. I'm trying to understand what is happening with my body. I love to read, work on my lawn, and enjoy family outings when I'm not feeling so tired. I really would like to converse or email with anyone that can possibly share what they have experienced with Sjogrens and maybe shed some light as to how they have dealt with the illness. Sometimes I'm at my wits end.
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E-Pal number 2005-082
Name: Sherilynn
Gender: female
Age: 35
Lives in: Sydney, Australia
Years with Sjogren's: 15
About Me: I have Sjogren's, Lupus, Reynauds and Rheumatoid arthritis, BUT I actually have a great life. A great husband and 14yr old twin boys. I'd love to be able to talk about the things you can't tell others with these diseases and to share in someone's life too.
I LOVE the movies, reading, cooking and travel. Talking and sharing is a passion too. I would like to make a real friend here, someone who wants to 'go the distance' with me. Thanks :>)
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E-Pal number 2005-079
Name: Kev
Gender: male
Age: 28
Lives in: Yorkshire, England
Years with Sjogren's: 3
About Me: I am 28 and living in Yorkshire, England. Diagnosed just over 3 years. I enjoy
motorsports and riding my bike and playing with my gecko... Would like to hear
from other male sufferers as we seem to be quite a rare breed! Just need to
know I'm not the only one...
~~~~~
E-Pal number 2005-078
Name: Brenda
Gender: female
Age: 47
Lives in: Minnesota, USA
Years with Sjogren's: Diagnosed 3 months ago, symptoms started about 8 years ago.
About Me: I am a mother of two. A daughter 19 and a son 16. Have been married for 23
years. I feel relieved to know there is a name for why we feel the way we do,
but others still think there is a cure or miracle pill to to make it better. I
think, just so it doesn't get any worse. I focus on my job and family but it's
always in the back of my mind and it's sometimes hard to watch everybody around
you moving forward when you feel like you are standing still or taking two steps
back. I work in a physically demanding job and some days wonder how long I can
keep doing it. More sick days than ever. Kind hearted boss though. I've always
relied on myself, so leaning on people is hard for me. Enough of that, like
everyone else knows it is easier to talk about sjs with someone who can relate.
Just need to relate.
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E-Pal number 2005-075
Name: Lacey
Gender: female
Age: 40
Lives in: Georgia, USA
Years with Sjogren's: 9 months
About Me: Hi, I found out I had Sjogrens about a 9 months ago. I Had many symptoms for years. I had RAI post Graves Disease when I was 26. I'm looking for someone around my age to talk to about Sjogrens and how it affects our lives. I want to remain positive for the future but realize there will be problems along the way. I'm married, love to walk everyday, read a lot, work full time and spend time with my little dog! I have a few best friends to talk to but they have no clue as to what's going on with me on certain days. Would like to have the chance to talk to someone else with Sjogrens. Besides the dye eyes and mouth-I have a very hard time sleeping. Thank you
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E-Pal number 2005-071
Name: Sally
Gender: female
Age: 56
Lives in: Canada
Years with Sjogren's: 5
About Me: I have been living with Sjogren's for 5 year's now and finally got diagnosed. It has been a long haul trying to find out what was wrong with me. I am looking for an e-pal that we can exchange idea's and just be a support for one another.
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E-Pal number 2005-070
Name: Karen
Gender: female
Age: 43
Lives in: England, Manchester, UK
Years with Sjogren's: 3 months diagnosed
About Me: Hi I'm Karen, 43 years old teaching assistant in a primary school. I have a daughter 18 and a son 15, have been married for 20 years. I have recently been diagnosed with Sjogrens after many years of feeling like a hypochondriac. Although my family is supportive they do not understand how I am feeling - they presume I will be cured now I'm having treatment. I would like to talk to somebody of around about the same age and recently diagnosed.
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E-Pal number 2005-065
Name: Krista
Gender: female
Age: 28
Lives in: Georgia, USA
Years with Sjogren's: 5
About Me: I am a nurse practitioner. I was diagnosed with SS about 5 years ago. It seems sometimes to be an uphill battle. Most of the time I feel fine, just fatigued. Would love to hear from others and share tips for coping.
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E-Pal number 2005-056
Name: Diana
Gender: female
Age: 44
Lives in: Illinois, USA
Years with Sjogren's: 15
About Me: I have had Sjogrens for 15 years now. Would like like to find some one to talk to. I have no children, but allot of nieces and nephews. Family still lives close but, after a while, they just don't want to listen to me. Husband thinks now that I am feeling OK, (As OK as we can be), I no longer need my doctors or medications.
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E-Pal number 2005-055
Name: Kathryn
Gender: female
Age: 40
Lives in: England
Years with Sjogren's: just diagnosed
About Me: I am married with two teenage sons. I work for the ambulance service. I love to go to the cinema with my friends and go for a drink in my local pub! I would love to be contact with someone who understands what I am going through. To be able to support each other, and share experiences.
~~~~~
E-Pal number 2005-054
Name: Beverley
Gender: female
Age: 52
Lives in: Cornwall, UK
Years with Sjogren's: not sure. Dx last month
About Me: Happily married, two adult boys, teacher (primary) and tutor for teacher training, love gardens, books and writing. Love travelling and horse riding, dogs, cats and the world in general. Usually jolly but pretty fed up right now (bad back!) Overworked and usually exhausted.
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E-Pal number 2005-051
Name: Lee
Gender: female
Age: 53
Lives in: Phoenix, Arizona, USA
Years with Sjogren's: one month
About Me: I have had a long journey until finally diagnosed one month ago. Am plagued with overwhelming fatigue, joint pain, GI disturbances, and loss of concentration and memory. Had to leave my job as a researcher. Additionally, have been diagnosed with a rare form of lung cancer, thyroid cancer and also Hashimoto's. I am 53 years old and would love to correspond with others about coping and adjusting to new lifestyles.
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E-Pal number 2005-049
Name: Barrie
Gender: female
Age: 44
Lives in: Florida, USA
Years with Sjogren's: 1
About Me: I was dx with Sjogren's last year, but was told by my physician that I probably had it for a lot longer. Besides Sjogren's, I also deal with IBS, anticardiolipin syndrome, and asthma. My true passions are reading, writing, watching old movies and animals. Looking forward to hearing from you!!
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E-Pal number 2005-047
Name: Carol
Gender: female
Age: 62
Lives in: Texas, USA
Years with Sjogren's: 2+
About Me: I am an RN living in Texas who was finally diagnosed with Sjogrens in 2004 after seeing numerous specialists. I also have hypothyroid as a result and have undiagnosed muscle and joint involvement. I also had breast cancer in 2003. I am working, but don't know how much longer. Would love to talk with Texans and others about coping.
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E-Pal number 2005-046
Name: Tamme
Gender: female
Age: 46
Lives in: Pennsylvania, USA
Years with Sjogren's: 5+
About Me: I am a mother of 3 (ages 26 son, 26 stepson, and a 20 yo daughter, and also 2 grandchildren ages 9 & 2. This disease is a terrible thing to handle. The pain everywhere, blurred vision, dry eyes, dry mouth, trouble standing and sitting, I have a very sweet and loving husband that helps me allot. He feels helpless sometimes because he can't do much to really help me. I feel bad for him. Anyone who would like to write back in forth to give each other support I would appreciate it. Sometimes with this Sjogren's it gets depressing and you need to talk to or with someone that can understand what you are going through.
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E-Pal number 2005-045
Name: Kate
Gender: female
Age: 36
Lives in: Georgia, USA
Years with Sjogren's: 3
About Me: Blood tests negative, have constant muscle pain, kidney problems, burning in mouth, sometimes feel like body is on fire too. Terrible taste in mouth like metallic. Had to quit work becoz I can't walk more than 100 feet w/o exhaustion. Try to exercise - started walking 5 minutes on treadmill - hard to keep up - depression kicks in - I would like someone who knows what this is like to talk with - Nyquil is the only thing that helps the pain but the alcohol hurts my stomach. Believe it or not I try to stay positive esp for my family.
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E-Pal number 2005-043
Name: Brigitte
Gender: female
Age: 56
Lives in: Germany
Years with Sjogren's: 1
About Me: I am 56, 4 grown-up children, studied physics, doing counseling about EMF pollution in homes, my interests are spirituality, especially subtle energy, nature medicine and biophysics. I was diagnosed early with Sjogren's by accident and I would like to share my attempts to stop this process with other Sjogren's people.
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E-Pal number 2005-041
Name: Audrey
Gender: female
Age: 77
Lives in: Memphis, Tennessee, USA
Years with Sjogren's: 17
About Me: I am a 77 year old female, very lonely and have many health problems other than Sjogren's Syndrome. Enjoy using my vtech companion for email. It is not like a computer so I cannot see pictures or funny jokes, just receive words and am able to send words. It does provide me with some company. Would love to hear from others with this Syndrome.
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E-Pal number 2005-040
Name: Elizabeth
Gender: female
Age: 34
Lives in: Oklahoma, USA
Years with Sjogren's: 4
About Me: Dx 4 years ago, after extensive workups for MS, Fibromyalgia, Neuropsychiatric Testing (Psych told me all my symptoms and feelings were basically in my head). I have Raynauds, Seizures, Dryness. Lost a kidney last year to chronic pyelonephritis (unrelated to SS), cannot take meds due to kidney status was causing problems with other kidney. Just worn out with the fatigue and the pain. Wanting someone to visit with that has been around the block with this and told it was all in their head before finally a diagnosis.
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E-Pal number 2005-037
Name: MJ
Gender: female
Age: 47
Lives in: USA
Years with Sjogren's: 3
About Me: Almost 48 yrs yikes! Bounced from Dr. to Dr. from Dr......MS no Lupus no wait , not sure. Maybe just crazy! I am now just getting a support staff of Drs. that understand me and the disease or at least that I am not crazy. SJS with CNS involvement. Supportive family. Hobbies all kind crafts, sewing, reading (if I can). Want to chat with someone else who is "crazy" and finds humor in life. MJ
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E-Pal number 2005-036
Name: Mary
Gender: female
Age: 41
Lives in: Iowa, USA
Years with Sjogren's: 36
About Me: I am a CMA, married, 2 sons 11 & 15. I have has ss all my life. Dx at age 23, it started in parotid glands, they were removed at age 24. Now I have pancreatitis. I get severe HA, neck pain spasm, back pain, joint pain. I feel that I am alone I don't have anyone to talk to that understands. Can I find a friend to share my pains and thoughts with?
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E-Pal number 2005-025
Name: Barbara
Gender: female
Age: 51
Lives in: Tennessee, USA
Years with Sjogren's: 5-7
About Me: I was diagnosed with Sjogren's in 2000 via a lip biopsy and also have connective tissue disorder. I am looking for a lady, approximately my age (51) who has this disease to share our own personal survival strategies in dealing with the many manifestations of the disease. Right now, I am wrestling with my skin which is always dry no matter how much lotion or oil I use on it. I also have rosacea on my face and the elasticity of my facial skin is seemingly not there anymore.
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E-Pal number 2005-020
Name: Connie
Gender: female
Age: 52
Lives in: Nebraska, USA
Years with Sjogren's: 4 months
About Me: I would like someone my age. I haven't had Sjogren's long. And would like someone who can help me understand what I is happening to me. I like all kinds of Crafts. Quilting, Sewing, Hooking Rugs, Crocheting, and board games.
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E-Pal number 2005-019
Name: Kathy
Gender: female
Age: 35
Lives in:
Years with Sjogren's: symptoms for 12 years but, not yet dx.
About Me: I am a mother of 3 ..I have been married for nearly 13 years...just wanting a friend...just someone to talk to about symptoms they are having...and just day to day stuff.
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E-Pal number 2005-017
Name: Patricia
Gender: female
Age: 54
Lives in: Prestatyn, N Wales
Years with Sjogren's: 3
About Me: Actually had many diagnoses before Primary Sjogrens, from fibromyalgia to possible MS - in fact MS is STILL being investigated! Being treated at St Thomas, Lupus Clinic in London. Professor Hughes and his team are wonderful. Sjogren's has effected my nervous system quite badly - find difficulty in walking. Being treated with prednisolone, baclofen among other things. I know it can be a very lonely existence because most people haven't heard of Sjogren's or how it effects people (that's just dry eyes and mouth isn't it?) and I would be pleased to hear from anyone who just needs a chat. Hobbies are embroidery and quilting - hands permitting. Still have good sense of humour!!!
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E-Pal number 2005-016
Name: Cheryl
Gender: female
Age: 58
Lives in: Canada
Years with Sjogren's: 3

About Me: Hi. I just moved back to Canada from the states a year ago. I have had problems with dry eyes, mouth, fatigue, lung and g.i. problems. I take plaquenil for the fatigue which has helped a great deal. enjoy all types of crafts, reading, music and computer. live with my husband and cat. I would love to hear from other sjs members. Cheryl
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E-Pal number 2005-008
Name: Redetha
Gender: female
Age: 55
Lives in: Alabama, USA
Years with Sjogren's: less than 1

About Me: I was dx with ssj October 2004 - I am married (32 years to a supportive husband) with 1 son (married) and two four legged grandkids-one dog and one cat. I hate the pain, dry mouth, burning tongue, and swollen face. I try and not be a whiner - so hard. Seeking pal to share info. Recently started new med which has helped neuropathy. - Cymbalta. I teach Special Education -- tiredness and vision a problem at job.
Update Nov...I have found that the Rx Foltex has helped me with the fatigue.
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E-Pal number 2005-004
Name: Betty
Gender: female
Age: 37
Lives in: New York, USA
Years with Sjogren's: 7 months

About Me: Hi, I am a mother of four young children. I have been taking hydroxychloroquine for 5 months, and I actually feel worse than better. For me the worst part is the extreme fatigue , hair falling out and the aches and pains. So far I can deal with the dryness although it is annoying. I would like to find some people to talk with to see what is working for them and to just vent with someone who knows what it's like to live with this syndrome. Thanks. Sjogren's bites!
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E-Pal number 2004-224
Name: Scarlett
Gender: female
Age: 51
Lives in: Florida, USA
Years with Sjogren's: 7+

About Me: I would like to have a 'pal' to speak to about all of stuff we feel, good and bad. I'll be 52 in a couple of weeks, single with 3 grown children and 13 grandchildren, just recently quit working so I could spend more quality time with my family. I enjoy being a homebody but have lonely or bad days with only myself to grumble to. I am seeing a really nice man but like everyone else they just don't quite understand what we're dealing. I also enjoy movies traveling, good food, shopping, antiquing and just trying to keep positive about life and my spirituality.
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E-Pal number 2004-220
Name: Valerie
Gender: female
Age: 52
Lives in: California, USA
Years with Sjogren's: just diagnosed

About Me: After thinking I had completely lost my marbles, my dermatologist (of all people) called to tell me that probably had sjs. Now, I am struggling to come to terms with working and the usual demands of everyday life in addition to feeling like I am falling apart at the seams. Most of all, I am struggling with loneliness and depression and would love to walk this path with someone who never leaves home without a water bottle!!!
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E-Pal number 2004-218
Name: Rick
Gender: male
Age: 50
Lives in: Seattle, Washington, USA
Years with Sjogren's: 3 months

About Me: I began feeling really awful in mid-September and was diagnosed in early October. I have myositis, joint pain, CNS involvement as well as some Peripheral Neuropathy. Married and a father of a 4 year old daughter this has been a rough time emotionally, but I am working with a Psychologist and am finding purpose in the pain. Especially interested in discussing coping techniques.
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E-Pal number 2004-213
Name: Susan
Gender: female
Age: 51
Lives in: Tennessee, USA
Years with Sjogren's: just diagnosed

About Me: I am a 51 year old female, and I live in East Tennessee USA. I was just diagnosed Dec 2, 2004 with Sjogrens. My parents don't understand the diagnosis ,but my husband is wonderful about it. I look forward to having a special friend to exchange thoughts with. I am a Christian ,and believe God is with all of us. I am a Special Education Teacher .I love to read, listen to good music, and take long walks.
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E-Pal number 2004-201
Name: Carol
Gender: female
Age: 43
Lives in: Pennsylvania, USA
Years with Sjogren's: 2 1/2

About Me: I live in South Philly and was diagnosed with Sjogren's, lupus, fibro, insomnia, sleep apnea. I would like to be able to talk to someone for mutual support.
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E-Pal number 2004-198
Name: Margaret
Gender: female
Age: 48
Lives in: Scotland
Years with Sjogren's: 6 months

About Me: Hi, I live in Scotland where there is very limited knowledge on Sjogren's. I have had this condition for six months now. I have complete tear loss and have a lot of eye, mouth and burning throat pain. I have spend considerable time researching this condition with a view to a way ahead. I am very happily married and have two sons. Look forward to hearing from you.
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E-Pal number 2004-197
Name: Anne
Gender: female
Age: 36
Lives in: Bristol, UK
Years with Sjogren's: 12

About Me: I have suffered since I was a child, told years later it is Sjogrens! I have 2 children (teenagers!), have just had my lymph nodes removed, waiting for outcome! and would like to find a e-pal to share problems & solutions with, I work with disabled children part-time and try to be as positive as I can!
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E-Pal number 2004-191
Name: Jennifer
Gender: female
Age: 34
Lives in: Olympia, Washington, USA
Years with Sjogren's: 1

About Me: I am looking for somebody who has either PNS or CNS complications of SS.
At this point in time, my doctors are uncertain of the etiology of my PNS symptoms. So in a nutshell, I am interested in communicated with people who have had to deal with the course of their lives being altered due to this horrific disease. I am having a difficult time coping.
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E-Pal number 2004-189
Name: Gill
Gender: female
Age: 57
Lives in: Canada
Years with Sjogren's: 5

About Me: I have the usual symptoms of SS but am very active still walking my dog and gardening.. My mump glands are very large and get painful and swollen with a cold and have to go on antibiotics. I suffer terribly with yeast infections internally and externally so the antibiotics do not help this situation. Have very dry mouth and have had one bout of weight loss of about thirty pounds but have regained 10. Appetite is not good at times. Menopause very young after having three children via C section. Times when my mouth is ok but sialor not helpful. Any suggestions, Aches and pains like an attack and then feel better with celebrex. Tips of fingers numb. Any one who would like to communicate with me with SS is welcome.
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E-Pal number 2004-188
Name: Marcia
Gender: female
Age: 37
Lives in: Pennsylvania, USA
Years with Sjogren's: 1

About Me: I am looking for someone to share information and our daily ups and downs. I have been diag. with RA, Celiac Disease, and SJ. I am looking for friends...
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E-Pal number 2004-181
Name: Jenn
Gender: female
Age: 29
Lives in: Ohio, USA
Years with Sjogren's: 6+

About Me: Hello, my name is Jenn. I am an RN diagnosed with Sjogren's about 6 years ago. My symptoms have been showing themselves for many years before this though. I also have Fibromyalgia diagnosed 1 year before the Sjogren's. I have also recently been diagnosed with antiphospholipid antibodies. My current meds include Plaquenil and Relafen (for breakthrough joint pain). I also take Trazadone for the chronic muscle pain with the Fibromyalgia. I was just married 8 months ago and hope to start a family soon, but I am very nervous with the Sjogren's and antiphospholipid antibodies. Anybody in the same boat as me and need someone to talk to?
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E-Pal number 2004-179
Name: Michelle
Gender: female
Age: 37
Lives in: New York, USA
Years with Sjogren's: 3

About Me: Well we're to begin lol. I have had Sjogren's for 3 years now along with fibromyalgia, intercystitial cystitis and endometriosis. Oh and of course IBS. I have a ten year old daughter also. Would love to talk to anyone with this dreaded illness. Take Care Michelle
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E-Pal number 2004-177
Name: Angela
Gender: female
Age: 33
Lives in: Michigan, USA
Years with Sjogren's: just diagnosed

About Me: I am a 33 year old female just diagnosed with SJS. I have had problems with my parotid glands swelling for over 2 years. I had the right parotid removed in 2003, and now need surgery for the left. I am new to the SJS issue and would appreciate any information and advice I can get.
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E-Pal number 2004-175
Name: Cynthia
Gender: female
Age: 31
Lives in: Texas, USA
Years with Sjogren's: 3-4

About Me: I am a younger person with Sjogren's. I have learned many ways to cope, however I lack people in my life who understand this illness. I want to make friends with other empathic and compassionate people who feel as I do. Maybe we can meet or be friends, and attend the SSF meetings together. I am educated in Psychology. I have an interest in counseling, shopping, traveling, and writing poetry, however I am always open to new experiences and ideas.
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E-Pal number 2004-174
Name: Helena
Gender: female
Age: 37
Lives in: Minnesota, USA
Years with Sjogren's: 1 1/2

About Me: Hi, I was diagnosed with Sjogren's last year. I'm looking for someone with Sjogren's, who could share pregnancy experience with me, since I'm planning to get pregnant sometime soon. I'm married and have a 4 year old boy. My hobbies are scrapbooking and stamping.
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E-Pal number 2004-165
Name: Roberta
Gender: female
Age: 20
Lives in: Canada
Years with Sjogren's: 4

About Me: I just want to talk to someone my age who is experiencing the same thing as me. what their battles are and what the challenges of having this disease at such a young age.
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E-Pal number 2004-152
Name: Denise
Gender: female
Age: 52
Lives in:
Years with Sjogren's: 20

About Me: I was diagnosed a few years ago, but looking back, I am pretty sure I had this disease for quite a long time before I knew it. I also have diabetes, hypothyroidism, and fibromyalgia, which I think all stemmed from the Sjogren's. I love to read, would love to be able to walk a lot, but can't and exercise in any form always makes it difficult to do anything for days afterwards.
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E-Pal number 2004-151
Name: Lynnette
Gender: female
Age: 33
Lives in: Texas, USA
Years with Sjogren's: 1.5

About Me: I started out trying to shrink fibroids and ended up in a nightmare of pain, agony and premature diabetes. My rheumatologist told me last week that my symptoms were progressing. I am single, no kids and haven't even finished my MPH/MPA yet. Is there a happy ending? I am looking for someone who understands and can wander this maze with me.
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E-Pal number 2004-147
Name: Maria
Gender: female
Age: 36
Lives in: AZ, USA
Years with Sjogren's: 4

About me: Hi I'm a mother of 4 children and have been married for 15 years. I used to love to bake and get the house decorated for the fall holidays. It's very lonely not having someone to talk to about Sjogrens. I have a hard time finding people my age with it. Just want to know how they deal with it daily.
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E-Pal number 2004-136
Name: Mary
Gender: female
Age: 41
Lives in: Florida, USA
Years with Sjogren's: 5
About me: I am a single mother of an 8 year old boy. I work full time with children. I am active and try not to let Sjogren's get the best of me. I was diagnosed 5 years ago, with fatigue, dry eyes, mouth. I work out 5 days a week and try to stay flexible. I am on a lot of medications. Tried punctal plugs but they fell out. Have recently been diagnosed with reflux. I continue to be frustrated by the extreme amount of medications I have to take and the cost of them. My insurance company does not have a great list of Rheumatologists so I am looking for answers on my own. Would love to chat with someone who I can sound off ideas with.
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E-Pal number 2004-134
Name: Barbara
Gender: female
Age: 52
Lives in: New Hampshire, USA
Years with Sjogren's: don't know
About me: Hi- I am Barbara. Have had dry mouth off and on for a couple of years. I never thought much about it an it just sort of came and went. When I went into menopause I developed these hives that would come and go whenever they felt like it. I took medicine that gave me dry mouth but I had to take it for the hives. Then I stopped taking all the allergy meds because I couldn't stand the dry mouth! I then discovered I had dry mouth no matter what!!! I went to a DR. in Boston I had blood work done- no other autoimmune diseases according to the blood work. I am no sure what I have. Now I feel the dry mouth is worse then the hives. I have two grown children and I am in the education field so I have to talk allot. I am out for the summer and was quite upset to hear about Sjogren's! I don't know if I have it or not. I would love to talk with someone. I do take Salagan and it does help but only lasts for a couple of hours. Also concerned about my Teeth. Looking for any help or advice I can get. Please write!
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E-Pal number 2004-133
Name: Cathy
Gender: female
Age: 38
Lives in: Michigan, USA
Years with Sjogren's: 2 months
About me: Hello out there...
Newly diagnosed with SjS and am currently seeing 4 different Dr.s at the same time. Sometimes 2 visits a week. Seems I'm having a reaction to Plaquenil. Just had punctal implants for dry eyes which seems to help. My first symptom was alopecia which started last October for which the biopsy was positive for lupus characteristics although not confirmed yet. Having many symptoms as of late but not sure of they are related to the medication reaction. I have been married for 22 years now and have four children and a grandson. I currently work as A Director of Nursing in a long term care facility and am having some trouble with the commute and just staying focused. My family is very worried about me and I'm not sure how to make them feel better as I have always been the strong one and organizer. I have a great sense of humor and actually don't have any current hobbies as I have very little time. I guess my current hobby is going to the Dr. Ha, Ha.. I would like to find an E-Pal to exchange information with and share everyday experiences with as there seems to be much more to this diagnosis than I first thought.
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E-Pal number 2004-130
Name: Phyllis
Gender: female
Age: 68
Lives in: Pennsylvania, USA
Years with Sjogren's: 7
About me: I have had SS for 12 years or more. Five years trying to find out and 7 years in treatment. I love to read mysteries and I sew, knit, crochet and when possible care for my 1 yr. old Great-grandson Steven. I am active in our local kennel club, serving on the board and as trophy chairman for our big show in July. I have been having a problem with walking lately and find it is getting worse. I feel as though I should walk right, but I keep staggering like a drunk. I try to explain to my friend what is going on, but I'm sure she doesn't know. She just keeps telling to stay off the bottle. Of course I have an allergy to alcohol and caffeine. I have 4 children, 8 grandkids, and 6 great-grandkids. My husband Dick just retired at age 70. I would like to talk to SS people who can understand and maybe help me cope better. I'm so tired of being told, every time something comes up, that oh. it's just the Sjogren's. Thanks you and I look forward to e-mailing anyone who will talk to me.
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E-Pal number 2004-126
Name: Leah
Gender: female
Age: 68
Lives in: Washington, USA
Years with Sjogren's: ?
About me: Just had my first blood test to find out for sure if I have Sjogren's. Do have dry mouth symptoms and lately have noticed dry eyes in the morning. Have been having shoulder pain which I had decided was old age and ignored - now I wonder. Am a widow with one grown daughter and two granddaughters. Did have breast cancer 3 years ago and am doing great and figure it is gone. Since I have never heard of this disease before am interested to find out what it is and if the tests are positive what will help me stay well as so far am pretty healthy.
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E-Pal number 2004-125
Name: Kathy
Gender: female
Age: 48
Lives in: New Jersey, USA
Years with Sjogren's: 20
About me: I have been married for 24 years and have 4 children (22,19,18 and 14). I am still able to work full time as a legal secretary. I enjoy my garden and genealogy research. Looking for someone who understands SS and taking care of a family with a sense of humor.
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E-Pal number 2004-124
Name: Norma
Gender: female
Age: 32
Lives in: Scotland, UK
Years with Sjogren's: 2+
About me: Am a very tired and bored mum of 2 girlies looking for someone to share laughs and experiences with. Love reading and music. Miss not being able to work due to SJS it is fairly uncommon here in Scotland!!
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E-Pal number 2004-122
Name: Lisa
Gender: female
Age: 26
Lives in: Leicester England
Years with Sjogren's: 2
About me: HI! I have a 6 yr. old son who is a star and I live with my partner. I'm between doctors at the moment as I sought a second opinion because of his 'Go home and get' on with it attitude. My symptoms seem to be getting worse. Especially the joint pain, fatigue, dry eyes/skin. Would like to talk to people around my own age and/or with similar problems. Would also like know, if anybody just falls down because of their legs giving way, it has been a problem for me for quite few years and wondered if any other sufferer has this problem.
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E-Pal number 2004-120
Name: Joyce
Gender: female
Age: 52
Lives in: East Hampton, NY, USA
Years with Sjogren's: newly diagnosed
About me: I am a disabled grandmother and mother, I love being with my grandchildren. I do ceramics and like to paint on fabrics and write poetry. I crochet, badly LOL. I have been married for 35 yrs. I have been very ill for about the past five yrs. Just recently my neuro dr., did the blood work that found the Sjogrens. I have fibromyalgia and diabetes already also osteo arthritis and stenosis. I live in pain daily, I would dearly love to talk to someone who can help me cope with this disease and help me get help and to understand what's happening to me. I have a good sense of humor and I think that helps me get through most days. Hope to hear from someone soon. Joy
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E-Pal number 2004-119
Name: Deb
Gender: female
Age: 43
Lives in: Australia
Years with Sjogren's: recent diagnosis
About me: I would love someone with a sense of humour to chat to about symptoms of sjogren's. I love reading, art and music. I have been married for 22 years and have 3 children ages 21, 18 and 12. Just finding out more about sjogren's and sharing experiences with someone else would be great!
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E-Pal number 2004-108
Name: Jan
Gender: female
Age: 53
Lives in: Spokane, Washington USA
Years with Sjogren's: 13+
About Me: Hi, I was diagnosed in 1991 but had so many symptoms before that. I will briefly list what I have: Sjogren's, fibro, cfs, diabetes, neuropathy in feet/legs/arms & hands, narcolepsy, hypo-thyroid, asthma, Meniere's ear syndrome, reflux, and panic disorder.
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E-Pal number 2004-092
Name: Barbara
Gender: female
Age: 57
Lives in: Texas, USA
Years with Sjogren's: 1
About Me: This is all new to me and I want to find a pal that can relate to the problems without being depressing. I work full time (sorta) and try to be healthy and need to know more about what is and is not related to the SjS.
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E-Pal number 2004-091
Name: Jenny
Gender: female
Age: 25
Lives in: New York, USA
Years with Sjogren's: Just Diagnosed
About Me: I am 25 years old, and I am getting married 5/28/04. I was just diagnosed with Sjogren's and I am very concerned. The symptoms I have been having are infections in the parotid glands. I'm looking for someone who is having the same symptoms as me and someone that can assure me that having this condition can tell me we can live normal lives. :O( 
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E-Pal number 2004-080
Name: Sharon
Gender: female
Age: 57
Lives in: New York, USA
Years with Sjogren's: 5
About Me: Hi, I've had a rough passage with Sjo. in my lungs &liver, SLE, Lupus, RA, Osteoporosis from meds, i.e. Prednisone & Methotrexate, debilitating fatigue/pain that has changed my life and I am trying to fight it (LOL), but sometimes I can't. Before diagnosis, I was very active and had a good life. I had a very pressured job as a paralegal but had to stop working. I try to exercise, I have a treadmill, but don't seem to use it as often as I should. I run out of energy. (I'm too tired to go clothes shopping and that used to be my #1 pastime). I am thinking about buying the Pilates machine, but hear that it's not too good for atrophied muscles. I give up lol. Hobbies: I love Broadway shows, used to love tennis, was a new golfer play the piano/keyboard by ear, avid reader. I hope to find people in similar situations where we can motivate each other and give one another good advice, I enjoy helping others.
~~~~~
E-Pal number 2004-077
Name: Sandra
Gender: female
Age: 40
Lives in: New Zealand
Years with Sjogren's: 4
About Me: I am a positive person making the most of my life, and not allowing my diseases (SS, SLE, RA, pernicious anaemia) to control what I want to do. I would love to hear from others who are not letting their illness beat them. I am currently working as a High School Librarian but plan of moving overseas to teach English as a foreign language.
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E-Pal number 2004-072
Name: Maria
Gender: female
Age: 53
Lives in: Portugal
Years with Sjogren's: 4
About Me: I would like to be able to talk to someone who understands this problem and cares. I love my job and I love traveling. I don't do it so much now. I have a house in the beach and I love to be there. I have a little she dog . I enjoy reading, swimming and going for walks.
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E-Pal number 2004-064
Name: Arlene
Gender: female
Age: 53
Lives in: New York, USA
Years with Sjogren's: 3
About Me: I am a happily married mother and farm wife. I wish to be supportive for others and to be supported. I live in NY State on a farm. I like reading, canoeing , meditating, and gardening. My age is 53 . My life is much more limited now but I try to be positive.
I will answer all e mails that I receive.
~~~~~
E-Pal number 2004-057
Name: Betsy
Gender: female
Age: 53
Lives in: Maryland, USA
Years with Sjogren's: just diagnosec
About Me: My name is Betsy and I am an active happy woman who is grateful that at last I have a reason for all these seemingly unrelated symptoms. Everyone has always said that everything is in my head and at last I can prove that I'm not a hypochondriac. I am an artist who, because of other physical problems, will have to drastically change the things I do. I am looking for friends who can share helpful info and to offer a shoulder to those who need it. I know that my positive outlook on life will help me get through this and am willing to help others deal with it too.
~~~~~
E-Pal number 2004-055
Name: Linda
Gender: female
Age: 50
Lives in: New York, USA
Years with Sjogren's: recent dx
About Me: Hi Ya!
I am a fun loving happy go lucky individual who is looking for a pen pal to share a few laughs and support in coping with life's challenges we have been given. I try to focus on my blessings in life and take things one day at a time and just keep plugging along as best I can. I hope to make some new and wonderful friends. :)
~~~~~
E-Pal number 2004-054
Name: Nilsa
Gender: female
Age: 27
Lives in: Texas, USA
Years with Sjogren's: 2+
About Me: I was dx with Sjs about 2 years ago, but I know I've had it longer. Also have RA, fibromyalgia, carpel tunnel in my left hand, and keratitis sicca (eyes). I found all this out the last year of working on my master's degree. It was a blow to me and I still feel I struggle between the depression-acceptance stages. It's the pain that gets to me. I would like to talk to someone who perhaps is feeling the same. I haven't met anyone with else with this syndrome and talking to people who don't have it don't seem to understand.
~~~~~
E-Pal number 2004-049
Name: Anna
Gender: female
Age: 51
Lives in: Canada
Years with Sjogren's: 0
About Me: I am writing on behalf of my sister Maria who is 57, lives in Slovakia and doesn't speak any English. She has been recently diagnosed with sjs and feels very depressed. Do you know any support group there or anybody who speaks Slovak/Czech. I would be grateful. Anna
~~~~~
E-Pal number 2004-042
Name: Linda
Gender: female
Age: 39
Lives in: England
Years with Sjogren's: 4
About Me: Have only just found out that I may have this syndrome, i had suspected for a while. Am happy easy going person, married with 3 cats. I love to laugh, and have fun. Love films, and my passion is the history of Titanic. I like to read, mostly biographies, some fiction. I like gardening, and I love using the internet and emailing my friends and family.
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E-Pal number 2004-041
Name: MJ
Gender: female
Age: 63
Lives in: Florida, USA
Years with Sjogren's: 17
About Me: I know no one with this condition. Even the doctors I have gone to only know about the dry mouth and dry eyes aspect of the disease. Perhaps someone I can speak to who can understand my suffering and maybe give me some ideas. I try to maintain my spirited attitude when with others and love to read, travel which is becoming increasingly difficult. Love watching sports, and need to correspond with some who have learned to overcome this condition. On a medical disability from teaching secondary sciences. Sometimes I get very depressed over it. I am a young 60's lady with a 100 year old body.
~~~~~
E-Pal number 2004-036
Name: Terry
Gender: female
Age: 46
Lives in: Scotland
Years with Sjogren's: 15
About Me: I was dx with ss and vasculitis 5 yrs ago, but I have had it maybe 15 yrs. I am married with a son and a daughter 25 and 24 yrs, and I work part time, its about all I can manage, I have joint pain and tiredness and sometimes feels very old, I also have very dry eyes, I have had my tear ducts closed 3 times I won't be getting it done again, its not been very good this time. Would like to hear how others cope with this disease.
~~~~~
E-Pal number 2004-035
Name: Diane
Gender: female
Age: 53
Lives in: Mississippi, USA
Years with Sjogren's: recently diagnosed
About Me: Greetings! This is all new to me and my doctor is not being very informative about it even though I have trusted him completely until now with my other autoimmune disorders; i.e., fibromyalgia, Hashimoto's thyroid and now SS. First it was my mouth burning and no moisture, now it is my eyes burning and pain so bad I cannot function. Then I have days with both so painful. I have put up with the aches and pains due to the Fibromyalgia, but it is getting worse, so I don't know what is Fibro and what is SS. I have over the last few years turned my life around and now look to God and our relationship to help me through; but each and every day, I feel bad and it becomes quite depressing. Especially living alone. My children are grown and I was so looking forward to these years, but the pain is relentless. I don't know what to take and what will help. So if I could have a pen pal to chat with and to keep each other positive, it would mean a lot. I enjoy some yoga, crafts, beading, painting, reading, home projects, travel and church and/or community activities.
~~~~~
E-Pal number 2004-032
Name: Michelle
Gender: female
Age: 32
Lives in: Staten Island, NY, USA
Years with Sjogren's: 8
About Me: Hi, I'm 32 yrs old. I was diagnosed 8 years ago. I have very bad fatigue, arthritis, dry eyes and mouth, a bad hip, which is from the prednisone, I had hip surgery. It's a lot better than it was but not 100%, I would say 90% better. I'm married but I have no children. I'm very afraid to because of the Sjogren's. My interests are sewing, computers and reading. I'm looking for an E-Pal with similar interests and someone who won't let this disease take over their life cause I won't.
~~~~~
E-Pal number 2004-030
Name: Tina
Gender: female
Age: 42
Lives in: UK/NEWCASTLE
Years with Sjogren's: 10
About Me: Newly diagnosed after initial diagnosis of in chronological order: glandular fever, chronic fatigue syndrome, depression (ridiculous if you know me), lupus, polyarthritis, fibromyalgia, at times felt like a hypochondriac!!! I've not been able to work for almost 4 years. Just couldn't cope with the Northern Line anymore, all Londoners know what I mean. Moved to Newcastle, almost 2 years ago. Would love to share information & inspiration & to spread some cheer.
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E-Pal number 2004-027
Name: Deanna
Gender: female
Age: 43
Lives in: Florida, USA
Years with Sjogren's: 2
About Me: Hello! I am 43 yr old newly diagnosed with Sjogren's. I have been seeking an answer for about 2years and was recently diagnosed, Finally! I suffer from mild dry eyes, very dry mouth and lots of joint pain and fatigue. Despite everything I am trying to keep a positive attitude and learn as much as I can about the disease so I can feel informed and stay on top of myself and the best treatments. I work full time as a office manager for a Psychology Practice. I am married and have a 23 daughter with 2 grandchildren and a nineteen year old son. I love to read, walk, antique and shop!!
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E-Pal number 2004-025
Name: Diane
Gender: female
Age: 46
Lives in: NSW Australia
Years with Sjogren's: 10+
About Me: Hello, I have ra plus ss and recently diagnosed with peripheral neuropathy after many years of symptoms. I am having trouble dealing with the meds I have to take, would love to talk to others who may have tips on coping with all these probs. I live in the country so I do not have much in the way of available health support in these areas. I am married with 2 children, one still at home and 2 spoilt cats. I am a textile artist and love all types of hand work.
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E-Pal number 2004-009
Name: Karen
Gender: female
Age: 50
Lives in: Michigan, USA
Years with Sjogren's: recently diag.
About Me: I am married, have no children, have a schnauzer, that we spoil. I am active, work part time, play golf, and exercise, ride bike, and walk. I have had dry eyes for about 3 years, have been told I have acid reflux. I currently don't have joint pain. I am wondering how long before you notice life changing systems, and what treatment seems to be working for people. I try to keep positive. would like to hear from anyone with suggestions.
~~~~~
E-Pal number 2003-172
Name: Keli
Gender: female
Age: 42
Lives in: Texas, USA
Years with Sjogren's: 6
About Me: Looking for someone who also has multiple system involvement. Any solutions to the severe fatigue? I've been on methotrexate, Enbrel, Plaquenil and multiple other medications. Any advice on how to help my spouse deal with this disease? Thanks
~~~~~
E-Pal number 2003-137
Name: Evelyn
Gender: female
Age: 48
Lives in: Ohio, USA
Years with Sjogren's: 12
About Me: I was diagnosed officially with Sjogren's in 2001, but have certainly had it for much longer. I originally thought dry eyes and mouth were a nuisance and that my fibro issues were more of a problem. Over the years sjogren's has become much more challenging as it incapacitates me more often with joint and nerve related issues. I have tried various treatments and have settled on an antibiotic regimen which has provided a remission of many of my symptoms. I am a group leader with the Sjogren's Foundation and run a local support group. I still enjoy emailing people individually or in a group format. We all need support. Hoping to talk with some of you. Wishing you wellness. Evelyn
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E-Pal number 2003-129
Name: Cheryl
Gender: female
Age: 50
Lives in: Tennessee, USA
Years with Sjogren's: ? Many
About Me: I'm a teacher and a mother of 3 grown children. I've been married for 31 years. My mother had Sjs also. In addition to Sjs, I have Graves thyroid disease, and I'm in remission for non-Hodgkins lymphoma. I would be happy to hear from other patients with advice or those I might be able to help.
~~~~~
E-Pal number 2003-126
Name: Ande
Gender: female
Age: 40
Lives in: Tennessee, USA
Years with Sjogren's: 5
About Me: I've had sle for 17 years and Sjogren's for about 5 years. My symptoms of the Sjogren's seems to increasingly worse with each year. I am married with three children. I am 40 and feel like 80. I really feel isolated with this, and how it makes me feel. I am new to this state and would like to meet "like" people with similar problems.
~~~~~
E-Pal number 2003-125
Name: Helen
Gender: female
Age: 41
Lives in: England
Years with Sjogren's: 6
About Me: Have suffered with SS since the birth of my daughter six years ago. I was only diagnosed a year ago when I forced my GP to refer me to Dr Hughes at St Thomas's Hospital in London. My symptoms include fatigue, muscle and joint pain, gastro problems, interstitial cystitis, livedo, Hughes syndrome and hypothyroidism. One of the most debilitating symptoms is that my legs ache constantly and I would be interested to know if anyone else suffers from this. It does not appear to be a common symptom. I had to give up work at the end of July because the stress made the flare ups more frequent and worse. It would be nice to communicate with someone that understands what I have been and am still going through.
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E-Pal number 2003-098
Name: Diana
Gender: female
Age: 55
Lives in: USA
Years with Sjogren's: several
About Me: I was diagnosed with Sjogren's three years ago, and Fibromyalgia just recently. I am still trying to learn about this frustrating disease. It is so complicated and the symptoms can get so difficult to deal with. Others don't seem to understand what we are going through because we "look fine". I would like an e-pal to compare notes with. It would be nice to be able to share the ups and downs of this disease with someone who has been there, and I am a good listener. I am married and enjoy reading, gardening, and my dog. 
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E-Pal number 2003-088
Name: Jim
Gender: male
Age: 36
Lives in: Australia
Years with Sjogren's: 2 years
About Me: I'm Jim from Coffs Harbour, Australia. Around 2 years I was diagnosed with Sjogrens Syndrome, due to the dryness of my mouth and the effect it was having on my teeth. I am also an Epileptic and just prior to being diagnosed with SS spent 10 days undergoing constant testing in Sydney by Epilepsy specialists do find out why I was feeling so tired and forgetful. SS was not even mentioned as a cause. After returning I went to see my dentist to fill an appointment I had to postpone due to my tests in Sydney. He couldn't believe how dry my mouth was and the affect it was having on my teeth. He subsequently told me I had SS. It seems that my testing in Sydney was a waste of time. I would love to swap emails with someone who can empathise with a fellow SS sufferer. Not many people know what we're going through, so get in touch whenever you like. Jim.
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E-Pal number 2003-079
Name: Robyn
Gender: female
Age: 49
Lives in: W.A. Australia
Years with Sjogren's: 2
About Me: I am new to SS although have been diagnosed with a bone marrow disease (Essential Thromboycthemia) and Discoid Lupus in 1994.
I live in Perth and find it very hard to get a Doctor who knows about SS. Would love to hear from others from Australia. I have to daughters 21 and 17 and a partner who has helped me with alternative treatment for my other 2 diseases.
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E-Pal number 2003-075
Name: Veronica
Gender: female
Age: 55
Lives in: British Columbia
Years with Sjogren's: 33 years
About Me: Hi, my name is Veronica, and I am 55 and have had SS symptoms for ever it seems, although I was not diagnosed until early 70's and have also been diagnosed with Lupus ('96). I live a full and busy life, and have always had a very positive attitude, but sometimes feel it would help to talk to other SS patients, especially when faced with occasional seemingly impossible problems. Right now my teeth and soft tissue are the big issue!
Hope to talk to some of you soon! Veronica
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E-Pal number 2003-068
Name: Elaine
Gender: female
Age: 34
Lives in: Coquitlam, B.C, Canada
Years with Sjogren's: 2+ years
About Me: I was diagnosed with 'Sjogrens' over a year ago but have had poor health for a good 10 years. I have very dry eyes, eye pain, itchy eyes, light sensitive, swollen glands, fatigue, joint pain, eye allergies too and swollen eye area, endometriosis, interstitial cystitis, swallowing trouble and breathing trouble. All these symptoms came on after a period of stress.
I don't know anyone with this problem and would to have someone to chat with who can relate. I do allot of my own research and am constantly trying new things to help improve my health, such as foods, exercise and supplements. Really hope to find an e-pal to share stories with.
~~~~~
E-Pal number 2003-054
Name: Kate
Gender: female
Age: 34
Lives in: Georgia, USA
Years with Sjogren's: 4 years
About Me: Hi I was just diagnosed today (April 16th 2003) & told I have been going for 4yrs undiagnosed - I'm not sure what to make of this diagnosis - I have had a lot of pain for years and am hopeful my rheumatologist and new meds will help- I would like to talk with other who know and/or experience this. Hope to hear from you soon. Kate
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E-Pal number 2003-040
Name: Cathy
Gender: female
Age: 54
Lives in: Maryland, USA
Years with Sjogren's: 2 years
About Me: I am a grandmother with 6 grandchildren. I work part-time and love to travel, read, and gardening. I have problems with fatigue and trying to balance my activities and grandchildren with getting enough rest. I also have frequent flares with more severe dry eyes and mouth and fatigue during these episodes. I would like to hear from others my age and hear how they manage living with this illness and depression from not being able to do what you used to do.
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E-Pal number 2003-039
Name: Angie
Gender: female
Age: 33
Lives in: North Carolina, USA
Years with Sjogren's: 4 years
About Me: I am 33, soon to be 34 years old. I was diagnosed with Sjogren's in Nov. 2002 and started plaquenil. I have not been able to work since I been very ill with the disease over years ago. The plaquenil has resulted in me having improvement over the last few months. My worst symptom is swallowing difficult and pain. My throat often feels swollen and sore, but is better than it was now that I am on plaquenil and evoxac to stimulate saliva. I am very interested in finding an e-pal with the illness and would enjoy writing to that person.
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E-Pal number 2003-026
Name: Janyce
Gender: female
Age: 43
Lives in: Lethbridge, Alberta Canada
Years with Sjogren's: 2 years
About Me: I am a single mom of three, Adam 20, Mark 18 Kim 17. I have had health problems all my life. Which has impacted the quality of life with my family.
Twelve years ago I was diagnosed with Celiacs Disease (gluten intolerance). Two years ago I was admitted to the hospital on New Years Eve with what they thought was a gall bladder attack. I spent a week in the hospital, but nothing was found. My family doctor decided to send my to my gastroenterologist in Calgary AB. He decided to run a whole gamut of blood work. My A.N.A. was positive. Further test were done by a rheumatologist, who diagnosed me with Primary Sjogren's Syndrome.
My symptoms include extreme fatigue, which can hit me slowly or it can hit in an instant. It is as if someone came up and unplug my energy. I have dry eyes, dry skin, dry nasal lining, unexplained severe abdominal pain, bowel spasms, muscle fatigue, joint pain , trouble with thyroid, and periodic edema of my hands and legs.
Submit: Send in Your Want Ad
~~~~~
E-Pal number 2002-105
Name: Clare
Gender: female
Age: 38
Lives in: Australia
Years with Sjogren's: 3 years
About Me: Hi, I was diagnosed with Sjogrens 3 years ago after my left parotid swelled. After I had a biopsy on the lump it seemed to settle down. A week ago (just before Christmas) it swelled up again in a big way. My three girls refer to me as the fat faced mummy. Now I keep running a temperature and feel terrible and I am in constant pain. Is there someone who can make me feel a little less insane? I don't know who to turn to. Is this just another way Sjogrens presents itself? I hope someone can make me feel a little less isolated.
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E-Pal number 2002-098
Name: Shirley
Gender: female
Age: 57
Lives in: Kansas, USA
Years with Sjogren's: dx'd 3mos but had symtoms many years earlier
About Me: I am a stay at home grandmother of 3 children and 4 grandkids. Before I became ill a year ago I babysat on a daily basis with some of my grandkids. They brought smiles and laughter into my life. Now I am battling sjogrens' dry eyes, dry mouth, joint pain, fatigue, swelling in fingers and toes, headache and depression at times. Also having urinary difficulties. I miss my old life. I was always busy doing something. Now I have to balance my energy output with rest (on the bed) everyday. I would like to have someone to talk with and share info about these autoimmune problems. How can we make our lives enjoyable and not worrying all the time what will be the next health problem. I hate taking medicine but am forced to do it. My husband is a pharmacist so I have access to info about any medicine. Its affect on each person is so different that I would like to hear how others are being helped by the medicines or therapies that are available. 

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E-Pal number 2002-076
Name: Cathy 
Gender: female
Age: 36
Lives in: USA , ILLINOIS 
Years with Sjogren's: 6yrs
About Me: HI, my name is Cathy. I have systemic lupus, raynauds, Sjogrens & neurological prob;s. looking for someone to talk with that understands, I like people, chatting , reading , pets... I was a nurse before being ill... thank you,, 
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E-Pal number 2002-073
Name: Lisa
Gender: female
Age: 47
Lives in: California, USA
Years with Sjogren's: 35+
About Me: I was dx'd with systemic and CNS SS in 2001 but I've had symptoms since I was about 10. I'm all messed up inside and am happy that it doesn't show yet. I would like to chat with anyone who has had hand/wrist, coordination/movement, and or organ involvement. Is anyone out there on Solumedrol, Methotrexate? I am. I started Cytoxan 10 days ago. This whole thing has changes my life completely ; )
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E-Pal number 2002-059
Name: Annette
Gender: female
Age: 76
Lives in: California, USA
Years with Sjogren's: 10
About Me: I think back to when I was in my 40's and now know I had symptoms of SJS. I also have Rheumatoid arthritis and stopped weekly injections of Methotrexate 4 months ago. I have been on Plaquenil for 3 months and I don't feel any better. My HMO is not up on SJS! I would like to hear from people in my age group and compare medications and any other good advice. Thanks to a wonderful group of people, I have learned more from all of you than my Rheumy!
~~~~~
E-Pal number 2002-051
Name: Synnøve
Gender: female
Age: 40
Lives in: Norway
Years with Sjogren's: 2+
About Me: Fortunately reading is my favorite hobby, even if a I was an active person. After SJS took control of my life there has been a lot of reading. I can endure the pains, but the tiredness is "killing me" and have a very negative influence on my life. Also dx with RA and Raynauds, and more is coming. Laughter has gotten me through a lot of ordeals. I would like to get to know someone around my age, who like me still have a lot of questions unanswered, but is able to remain positive.
~~~~~
E-Pal number 2002-047
Name: Helen
Gender: female
Age: 25
Lives in: Tasmania, Australia
Years with Sjogren's: 1
About Me: I was diagnosed 12months ago, I started taking medication to relieve some of the symptoms but now 12 months down the track the joint pains, fatigue and other symptoms have returned, this time even worse. My rheumy wanted to put me on another drug to help (methotrexate) but I felt that was a bit extreme despite my pain and rheumatoid arthritis which is now significant. So now I have decided it is time to actively research this syndrome and find alternatives. I am only 25 and feel I have lots of life ahead of me yet and want to make the most of it without letting the RA & SjS intrude!!! :) Would love to hear from anyone who could swap tips, ideas and advice.
~~~~~
E-Pal number August06
Name: Jill
Gender: female
Age: 39
Lives in: Victoria BC, Canada
Years with Sjogren's: 3

About Me: I have many interests - bridge, games, reading, walking, travel, crafts, movies, theatre among others - but am finding that this illness keeps me from a lot of the activities I once enjoyed. I would like to compare notes with an E-Pal about symptoms and am particularly interested in finding out if there are any Canadian medical centres who are looking into this illness.
~~~~~
E-Pal number June33
Name: Pam
Gender: female
Age: 53
Lives in: USA
Years with Sjogren's: 15?

About Me: Hello! I am looking for a fellow Sjogie that also has interstitial cystitis. We can compare notes! thanks. Pam.
 

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Sjogren's Syndrome...

is a chronic, slowly progressive autoimmune disease that affects the "exocrine" (moisture producing) glands of the body.

It is classified as a "connective tissue disease."

Sjogren's Syndrome causes dry eyes, dry mouth, and it can also affect other major organ systems. Uncommonly, it can affect the central nervous system. Read more here.