Sjogren's E-Pals
E-Pal Want Ads 2008
• 2008 • 2007 • 2006 • 2005 • 2004 • 2003 • 2002 • 2001 •
(browse all of them in one plain text file)
Don't forget to read the older ads, the more "experienced" E-Pals from previous years.
An E-pal is an Internet Pen Pal. Living with Sjögren's Syndrome can be very difficult, very lonely. Only those who have Sjögren's can truly understand how we feel. It’s important to have someone to "talk" to when no one else understands. An Sjogren's World E-Pal can be that special friend for you.
* To get a Sjögren's E-Pal you must first place your own E-Pal ad. For more information and to submit your own E-Pal Want Ad, click here. Requests are limited to 5 at a time.
Please remember proper email etiquette and never include your new e-pal's address if you forward email to others.
"Special Requests" E-Pals Also:
Parent's of Children with Sjögren's looking for E-Pals, Caregivers of those who have Sjögren's and Teenagers with Sjögren's are listed as special requests. Please look for "Special Requests" for these categories.
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E-Pal number 2008-58
Name: Lori
Gender: female
Age: 43
Lives in: Orlando, FL
Years with Sjogren's: 6 years
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 2008-57
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 2008-56
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 2008-55
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 2008-54
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 up to 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, Raynaud's, 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 2008-044
Name: Harriet
Gender: female
Age: 65
Lives in: Iowa, USA
Years with Sjogren's: 3 years
About Me: Hi, all you dear Sjogrens victims. I was diagnosed 3 years ago. What a relief just to know. I had to quit working, as stress was overwhelming. Everything has been going downhill since. Most recent diagnosis is Inflammatory Arthritis. Am on Methotrexate and seems to be helping some. Have no problems taking it. I to was told I had Fibromyalgia, Connective tissue disease, IBS, the automatic bowel flush. Dry eyes, nose, mouth and ears. Those are more of a nuisance at present. Just recently acid reflux as attacked me. Had a Nissen done for that in 2000. Now it is back with a vengeance. So hard to get under control. This will take a few Dr. visits. I feel for all of you that have this Sjogrens namesake. The pain keeps us at a low activity. Lets not forget depression. Please write. With this almost anything is worth a try. Maybe we can help each other, even just to keep company via the internet. I have 4 adult son's, 3 grandchildren, and have been a widow for 26 years. Just write young or old, we're in the same boat
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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 over think 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 2008-039
Name: Season
Gender: female
Age: 52
Lives in: USA
Years with Sjogren's: 3 years
About Me: I am 52. I always wanted to be a writer but now I find that I have very little energy to write. I won't give up though. I love reading, all sorts of crafts. I love being out in the sunshine but I don't know how that will work out this spring. My greatest problem is the terrible pain in my eyes. My nose stays painfully dry with swelling in my face. I have constant sinus problems and dry mouth. I am looking to my Father in Heaven for a miracle. I'm having a hard time dealing with this terrible disease
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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 2008-021
Name: Beth
Gender: female
Age: 32
Lives in: Massachusetts, MA
Years with Sjogren's: 3+
About Me: Hi there! I have had SJS for over 3 years now (you know how it is, started years and years ago but finally after a zillion doctors, I know what it is), started with a flare of fatigue and mono, never stopped. Sometimes it really affects my life. I can't move some days, from both pain and fatigue! I have the usual dry skin, mouth, etc and big joint pain that just won't stop and tiredness that is sometimes out of this world. My Rheumy is good but tells me there's not much out there on it. I want to move along in life with SJS, get married and have kids but I am concerned about having/caring for a baby. Looking to chat with someone who is around my age to discuss how to make the most of the best years of our lives!!!
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E-Pal number 2008-020
Name: Lauren
Gender: female
Age: 24
Lives in: California, USA
Years with Sjogren's: 6 years
About Me: I was just recently diagnosed, but I've been really sick for the past 6 years. I'm recovering from a 6 week stay in the hospital and am feeling lonely. I love to read and am an aspiring novelist. I'm a film buff and was attending film school before I got sick. 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 was 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 dont 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
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 CHRISTIAN 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 Rheumatoid 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: Elise
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
had 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.
