E-Pals (all)

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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: 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 2008-057
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 2008-044
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 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 2008-039
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 2008-020
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 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~~~~~
E-Pal number 2007-093
Name: Shannon
Gender: female
Age: 25
Lives in: South Australia, Australia
Years with Sjogren's: 1
About me: I was diagnosed about a year ago and have just started to have real symptom. I would love have someone to to chat to who really understands.
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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 2007-059
Name: Kay
Gender: female
Age: 18
Lives in: Maine, USA
Years with Sjogren's: unknown
About Me: I live in a small town. I love to walk sometimes up to 15 miles a day however that has not been possible for me this last year. I got very sick and have been tested for a number of things. today I found out my doctor believes I have Sjogrens. I don't really understand and just want to talk to some one who has gone through this.
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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 2007-049
Name: Linda
Gender: female
Age: 56
Lives in: Arkansas, USA
Years with Sjogren's: 5
About Me: I am a mother and grandma of 2. I was told in 2001 with Reynaud's syndrome with the onset of lupus which now I have. I also have vasculitis. I been trying for disability, finally got a hearing may 14. I still work 15 hours only, barely can do that but need my insurance. Would like someone to compare notes with.
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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