Sjogren's E-Pals

E-Pal Want Ads 2004

• 2005 • 2004 • 2003 • 2002 • 2001 • (browse all of them)

An E-pal is an Internet Pen Pal. Living with Sjögren's Syndrome can be very difficult, very lonely. Only those who have Sjögren's can truly understand how we feel. It’s important to have someone to "talk" to when no one else understands. An SjSWorld E-Pal can be that special friend for you.

* To get a Sjögren's E-Pal you must first place your own E-Pal ad. For more information and to submit your own E-Pal Want Ad, click here. Requests are limited to 5 at a time.

"Special Requests" E-Pals Also:

Parent's of Children with Sjögren's looking for E-Pals, Caregivers of those who have Sjögren's and Teenagers with Sjögren's are listed as special requests. Please look for "Special Requests" for these categories.

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E-Pal number 2004-224

Name: Scarlett
Gender: female
Age: 51
Lives in: Florida, USA
Years with Sjogren's: 7+

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

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E-Pal number 2004-222

Name: Patricia
Gender: female
Age: 68
Lives in:
Years with Sjogren's: in process of dx

About Me: I have just had a lip biopsy with inconclusive results after a year of testing which included a MRI and sleep study. I had a diagnosis of carpal tunnel and trigeminal neuralgia 5 yrs ago but added acid reflux, hiatal hernia, osteo arthritis and dry eye syndrome this year. The pain moves around in my body but the burning in my mouth and sore, painful toes cause the most discomfort. I'm extremely tired and because my thinking, memory and speech aren't always clear, I isolate myself from social activities. My husband is very supportive, however. I am involved in church activities and have hobbies but want to find out about peripheral neuropathy and dealing with isolation (self created to avoid having to worry about being articulate). I'm on Actonel AND Restatis, aside from those, I'm avoiding medications - so far.

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E-Pal number 2004-221

Name: Terri
Gender: female
Age: 42
Lives in: Iowa, USA
Years with Sjogren's: 2

About Me: I'm a single woman living alone in a house I own. I primarily have problems with dry eyes, dry mouth, and fatigue. I have good days and bad days, though mostly good. Yet, I'd like someone to "vent" to on the bad days, and likewise, I'd like to help someone through their rough spots. I enjoy yard work, walking, music, movies, theatre, and the ocean. I'm a Christian who has been struggling spiritually but am in the process of joining a new church.

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E-Pal number 2004-220

Name: Valerie
Gender: female
Age: 52
Lives in: California, USA
Years with Sjogren's: just diagnosed

About Me: After thinking I had completely lost my marbles, my dermatologist (of all people) called to tell me that probably had sjs. Now, I am struggling to come to terms with working and the usual demands of everyday life in addition to feeling like I am falling apart at the seams. Most of all, I am struggling with loneliness and depression and would love to walk this path with someone who never leaves home without a water bottle!!!

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E-Pal number 2004-219

Name: Peggy
Gender: female
Age: 45
Lives in: Nevada, USA
Years with Sjogren's: 9 months

About Me: Hi, I am looking for someone to talk to about SS. I want to find out as much as I can and how to deal with the fatigue and denial from my mother and daughter. I am 45, soon to be 46, divorced over 10 years ago, with two children, my son - 20 and daughter, 18. My daughter lives with me in a house I bought three years ago and have slowly been repainting and in some rooms, remodeling. I work three jobs to make ends meet, but am being eaten alive by my medical bills. Any suggestions on how to work with providers would be helpful. Look forward to hearing from you. Peggy

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E-Pal number 2004-218

Name: Rick
Gender: male
Age: 50
Lives in: Seattle, Washington, USA
Years with Sjogren's: 3 months

About Me: I began feeling really awful in mid-September and was diagnosed in early October. I have myositis, joint pain, CNS involvement as well as some Peripheral Neuropathy. Married and a father of a 4 year old daughter this has been a rough time emotionally, but I am working with a Psychologist and am finding purpose in the pain. Especially interested in discussing coping techniques.

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E-Pal number 2004-217

Name: Bernadette
Gender: female
Age: 33
Lives in: South Carolina, USA
Years with Sjogren's: 9 months

About Me: Hi My Name is Bernadette I was diagnosed with Sjogren's 9 mos. ago I have 4 Children who Really needs me And I don't have enough energy, and mouth always dry, and everyday feeling pain in my hands. I take plaquenil and another kind medication. so far I haven't had any serious problem but I don't understand any of this. My life has change dramatic I cant do the things I used to do without having so much pain. and always tired. I would love to talk to someone that understand me and can really help me Through this.

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E-Pal number 2004-216

Name: Suzanne
Gender: female
Age: 58
Lives in: Illinois, USA
Years with Sjogren's: in diagnosis process

About Me: Really want to communicate with any of you who have Sjogren's and what you have been through. I'm in the diagnosis process and don't know how that will turn out. So far, the blood test has come back negative and the lip biopsy is inconclusive because my salivary glands have atrophied, so the oral surgeon wasn't able to get any glands. I've got really dry eyes and mouth upon wakening, and also burning tongue at times. An operation last year seemed to bring all this to the fore-front. This sucks!! Let me hear from you.

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E-Pal number 2004-215

Name: Joan
Gender: female
Age: 51
Lives in: Texas, USA
Years with Sjogren's: 5

About Me: Hi. I have been working on developing my personal coping strategies for this disorder. As a registered nurse I work to keep myself informed about this disorder. As a personal trainer and yoga instructor I work hard to keep moving and maintain function as much as possible. As a spiritual person with a wicked sense of humor I work very hard to keep my attitude, mood and spirits strong. I am looking to communicate with others who are walking this same path.

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E-Pal number 2004-214

Name: Joe
Gender: male
Age: 34
Lives in: Tennessee, USA
Years with Sjogren's: 2-3

About Me: It took me years to find out what was causing my symptoms, first I remember having pain behind my right ear that lasted for months. Pain finally subsided then started experiencing oral symptoms. I developed Geographic tongue had constant sore throats, ENT I went to tried everything in the book to relieve my mouth symptoms. He suspected I had berchet's syndrome and referred me to a rheumatologist. He at first diagnosed me with fibromyalgia. Then on subsequent visits, found I had some kidney and liver problems. was referred to an eye doctor had a shirmer test done which was positive 6 ml of tears from one eye 7 ml from the other. Mouth stayed dry all the time and developed painful tongue ulcers. Then through asking my mother of family history I believe my grandmother and mom have it, along with my brother who has a few symptoms. My great niece has been recently diagnosed with sjogren's it affecting mainly her sweat glands but she is only 4 years old so there seems to be a history of it in my family. My eyes have not been a major problem for me but the oral problems are driving me about crazy. Being male it’s rare to find someone to talk to with similar problems.

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E-Pal number 2004-213

Name: Susan
Gender: female
Age: 51
Lives in: Tennessee, USA
Years with Sjogren's: just diagnosed

About Me: I am a 51 year old female, and I live in East Tennessee USA. I was just diagnosed Dec 2, 2004 with Sjogrens. My parents don't understand the diagnosis ,but my husband is wonderful about it. I look forward to having a special friend to exchange thoughts with. I am a Christian ,and believe God is with all of us. I am a Special Education Teacher .I love to read, listen to good music, and take long walks.

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E-Pal number 2004-212

Name: Jenn
Gender: female
Age: 28
Lives in: USA
Years with Sjogren's: ?-just diagnosed

About Me: I am 28 years old and have been plagued with crazy illnesses for the past 8 years. I was just diagnosed with Sjogren's, which was actually a good thing since it answered a lot of health questions and now there is a name for it all. I also have Rheumatoid Arthritis and a kidney disease. I am trying very hard to get back up and going. Trying to keep positive and want to get back to living life "normal" Just looking for someone to share similar problems and possible solutions with. Married with a 3 year old. My husband just still doesn't understand how difficult this is on me.

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E-Pal number 2004-211

Name: Sean
Gender: male
Age: 32
Lives in: Ireland
Years with Sjogren's: 4-5

About Me: I am a 60 year old missionary priest. I worked for much of my life in the Philippines on the island of Mindanao. There I developed an interest in ecology and have written many books on ecology and religion.
Sjogren's is affecting me through peripheral neuropathy - I have altered sensations in my feet and legs which is very unpleasant. unfortunately it seems to be increasing in extent and in intensity. I am presently taking plaquenil.
Hope to hear from you.

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E-Pal number 2004-210 Has a friend with Sjogren's

Name: Sumiya
Gender: female
Age: 32
Lives in: USA
Years with Sjogren's: 0

About Me: I have a friend who has just been diagnosed and we are trying to find out as much information as possible. Everything from the good to the bad, just so that we can get rid of "foundationless fears" about what to expect and learn how to deal with this lifelong situation.

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E-Pal number 2004-209

Name: Maxine
Gender: female
Age: 52
Lives in: Western Australia
Years with Sjogren's: 3

About Me: I am single, 55, one son, 31, Tafe student, like reading, walking, living in Perth Western Australia. Diagnosed about 3 years ago. Had dry eyes,(2 ptgerium ops.) for years, then 3 yrs ago the dry mouth, sore joints, very tired at times, see immunologist 6mthly. No treatment for this, primary Sjogren's syndrome, only refresh eye drops, mouth gel, toothpaste, regular exercise and plenty of rest, healthy foods as far as I know.
Love to have regular contact with others similar.

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E-Pal number 2004-208

Name: Edie
Gender: female
Age: 65
Lives in: California, USA
Years with Sjogren's: new

About Me: Hi, My name is Edie, I am 65 years of age and recently was diagnosed with SS which I most likely have had for many years. I began researching anything related to the symptoms I was having, both new and old. After a couple years I finally have some answers,,,,,,,Sjogren's. Wow, what an education! Now I would like to hear from any of you with whatever is in your heart about yourself, your health, your friends and family, etc. Simply VENT or whatever you need to do. I always have room in my heart for new friends and I welcome you. Write soon please,,,,,,,,,,I need your input, your understanding, acceptance and anything you learn that might help me and others. Thanks and god bless.

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E-Pal number 2004-207

Name: Pamela
Gender: female
Age: 20
Lives in: New York, USA
Years with Sjogren's: guessing about 4 years although as we all know symptoms started long before..

About Me: After much denial (which I even now sometimes struggle with) I am reaching out in hope that I can offer something and learn from others about this disease. This "uncommon" condition has drastically shifted my life and never stops. It took me about 4 yrs to become "officially" diagnosed after years of dry eye (no where near as bad as now) and joint pain in my hands. I am hoping that I can find some better medical resources, if it had not been for a routine eye check up I would still be in the dark about this. My primary care doctor originally told me I had RA and would be completely crippled by the time I was 35-mind you I was 17. I have complained of a constant sore throat for a year to him and he offered no help-until now I am pretty sure I now have digestive problems GERD or something to that extent. JOY---two months ago my ONLY good DR also told me I have the beginning of filamental cataracts. The salaqen I am taking doesn't work all that well, it can sometimes be extremely uncomfortable to work out, since one must breathe faster and my throat is so dry! Anyway, cheesy as it may sound I hope I can find someone to shares these things with, because at only 20, it has already run my life in a much different path and is often hard to make even love ones understand how much it does affect those of us who have it.

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E-Pal number 2004-206

Name: Debbie
Gender: female
Age: 47
Lives in: Illinois, USA
Years with Sjogren's: 6

About Me: Hello, my name is Debbie. I am a writer and media consultant. I have negative serum Sjogren's syndrome. I have had the Schirmer eye test and I was diagnosed with inflammation and 0 moisture. I have had CNS involvement, vasculitis, lung, colon, and now kidney problems. It has been hard for me because my blood test is negative. I have had a positive ANA and RF in the past, then it went negative. Doctors have been less than kind without the blood work and I got worse, almost fatally worse. I now have a internist who is taking this under control. I started Plaquenil and after 4 months, I am definitely feeling better with regard to joint pain.
I would love to be a part of your group for support. Thanks for listening!

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E-Pal number 2004-205

Name: Caroline
Gender: female
Age: 41
Lives in: England
Years with Sjogren's: 18 approx

About Me: I have sjns, ra, ibs, gerd and now fibromyalgia, the latest addition! I find it very isolating. It's hard for me at times to understand what's going on, let alone anyone else. I have 2 really gorgeous daughters 13yrs and 18yrs. I'm a singer and am getting married june 2004 to a lovely man.
I sleep 3 hrs a night and have the memory of a very sad gold fish. best wishes. Carolyn

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E-Pal number 2004-204 Special Request

Name: Debbie
Gender: female
Age: 42
Lives in: Massachusetts, USA
Years with Sjogren's: husband has it

About Me: My husband has had Sjogren's for a few years and I believe my 15 yr. old daughter is starting to have some symptoms. I am looking to talk to someone who might be having lip problems (red, sore, puffy).

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E-Pal number 2004-203

Name: Amy
Gender: female
Age: 45
Lives in: Texas, USA
Years with Sjogren's: ?

About Me: I am going through testing to see if I have Sjogren's. Over the past year I have had corneal ulcers, joint pain, Raynaud's, and horrible dry eyes and dry mouth to the point that I have trouble pronouncing certain words at the end of the day. So far tests have all come back negative. I have also noticed trouble concentrating which I attributed to my age and stress...I am frustrated that we can't find out for sure what is wrong and would like to talk to someone who has been through this.

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E-Pal number 2004-202

Name: Patti
Gender: female
Age: 43
Lives in: Cincinnati, Ohio, USA
Years with Sjogren's:

About Me: I am 44 and a mother of 4, ages 23, 21, 18 & 12 (disabled), all living at home, plus a wife. I have pr. sjs with "many" complications along with a lot of trials, physically and emotional! I would love to talk and also feel I can be of great help to those dealing. SJS is a rough road, especially with family in denial, which some are finally coming around. "You look great!" (if only they could see the inside).

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E-Pal number 2004-201

Name: Carol
Gender: female
Age: 43
Lives in: Pennsylvania, USA
Years with Sjogren's: 2 1/2

About Me: I live in South Philly and was diagnosed with Sjogren's, lupus, fibro, insomnia, sleep apnea. I would like to be able to talk to someone for mutual support.

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E-Pal number 2004-200

Name: Chris
Gender: male
Age: 40
Lives in: Minnesota, USA
Years with Sjogren's: Newly Diagnosed

About Me: I'm a newly diagnosed MALE which puts me in a VERY small minority! Married, I have 1 son in 3rd grade. I have had symptoms for 6 years, but only recently was I conclusively diagnosed by my dermatologist.

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E-Pal number 2004-199

Name: Betty
Gender: female
Age: 74
Lives in: Arizona, USA
Years with Sjogren's: 4

About Me: I live alone and get very lonely. I am not allowed to drive very far as the Dry Syndrome really bothers my eyesight. I don't know many of my neighbors as most are married and have their own interests. Living in a big city and not allowed to drive don't leave me much to do . I love gardening and sewing making quilts. I have a son that lives here but don't see him or his wife as they both work. Would love to hear from anyone that has Sjogrens as we can discuss our problems with this terrible disease.

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E-Pal number 2004-198

Name: Margaret
Gender: female
Age: 48
Lives in: Scotland
Years with Sjogren's: 6 months

About Me: Hi, I live in Scotland where there is very limited knowledge on Sjogren's. I have had this condition for six months now. I have complete tear loss and have a lot of eye, mouth and burning throat pain. I have spend considerable time researching this condition with a view to a way ahead. I am very happily married and have two sons. Look forward to hearing from you.

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E-Pal number 2004-197

Name: Anne
Gender: female
Age: 36
Lives in: Bristol, UK
Years with Sjogren's: 12

About Me: I have suffered since I was a child, told years later it is Sjogrens! I have 2 children (teenagers!), have just had my lymph nodes removed, waiting for outcome! and would like to find a e-pal to share problems & solutions with, I work with disabled children part-time and try to be as positive as I can!

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E-Pal number 2004-196

Name: Linda
Gender: female
Age: 53
Lives in: NB, Canada
Years with Sjogren's: diagnosed 1

About Me: My adventure with autoimmunity started 32 years ago with Hashimoto's disease, followed by Sarcoidosis(27 years), osteoarthritis(20 years), and completed with SS, diagnosed one year ago but symptomatic for at least 5 years. Currently unable to work as a critical care nurse, due to overwhelming fatigue, I spend my time looking for treatment alternatives and supportive friends, hopefully in Eastern Canada.

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E-Pal number 2004-195

Name: JJ
Gender: female
Age: 55
Lives in: Arizona, USA
Years with Sjogren's: 1

About Me: I don't know where to begin - I was diagnosed with SS, Fibro, migraines, arthritis plus a few other conditions. I have a great husband and three dogs who put up with my fatigue, aches, and pains. What is surprising to me is one day I feel almost half human and then BAM, I'm down for several days. On those days I try to keep a positive outlook that someone will find a cure. Until then my motto is "Kick Ass and Take No Prisoners". Yet at times all I want to do is hole up because I'm not capable of doing the things I used to do. I'm reluctant to travel, or ride my Harley on a road trip not knowing if I'm capable of making the trip. Looking for positive e-pals with a sense of humor to share experiences and discuss positive outlook about this #@*%@#(^$ disease.

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E-Pal number 2004-194

Name: Altoria
Gender: female
Age: 42
Lives in: South Carolina, USA
Years with Sjogren's: approx. 3

About Me: I have had SS for 3 yrs. I am married and have a son 20 yrs and a daughter 17 yrs. I work for a large firm. I like to read & cook. I presently take plaquenil. I would just like have someone to talk to about some of the ups and downs that we go thru and how I maybe or they may deal with different situations.

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E-Pal number 2004-193

Name: Kimberly
Gender: female
Age: 23
Lives in: Tennessee, USA
Years with Sjogren's: approx. 4

About Me: I have been diagnosed for a year and a half but sick for three or four years. I have primary Sjogren's Syndrome and I find this difficult to deal with at the age of 23. Looking for someone with experience in dealing with their own problems with Sjogren's for advice and support and mutual caring or for other young people with Sjogren's to share our experiences and offer mutual support. My interests are improving my health, relaxation, reading, writing, dancing, poetry, music, movies, and helping others.

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E-Pal number 2004-192

Name: Nettie
Gender: female
Age: 47
Lives in: Arkansas, USA
Years with Sjogren's: not sure

About Me: Hello, I am a grandmother of 47 and have not yet been fully diagnosed with SS. But have been with Fibro. I am looking for someone in Arkansas that can help guide me through my search for answers. My eye Doc feels I have SS as well as my Dentist, but haven't been by a Rhuemy in our state.

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E-Pal number 2004-191

Name: Jennifer
Gender: female
Age: 34
Lives in: Olympia, Washington, USA
Years with Sjogren's: 1

About Me: I am looking for somebody who has either PNS or CNS complications of SS.
At this point in time, my doctors are uncertain of the etiology of my PNS symptoms. So in a nutshell, I am interested in communicated with people who have had to deal with the course of their lives being altered due to this horrific disease. I am having a difficult time coping.

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E-Pal number 2004-189

Name: Gill
Gender: female
Age: 57
Lives in: Canada
Years with Sjogren's: 5

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

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E-Pal number 2004-188

Name: Marcia
Gender: female
Age: 37
Lives in: Pennsylvania, USA
Years with Sjogren's: 1

About Me: I am looking for someone to share information and our daily ups and downs. I have been diag. with RA, Celiac Disease, and SJ. I am looking for friends...

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E-Pal number 2004-187

Name: Elaine
Gender: female
Age: 49
Lives in: New Hampshire, USA
Years with Sjogren's: 10

About Me: I have been diagnosed with Sjogren's Syndrome and the symptoms are becoming more severe. My interests were reading as a very big interest. I have a hard time to read now. I am unemployed as of last year, but was always in the sales field, last as an Assistant Manager of a footwear and sportswear business. I love to cook and bake, but that is getting to be more difficult for me to do. I have been married for 30 years and have a grown daughter and son. Also, I have a beautiful mini schnauzer, Lexus. She and my family keep me from feeling down about this awful illness! I would like to share some communication with someone else who has Sjogren's Syndrome. We could maybe be of some help to one another.

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E-Pal number 2004-186

Name: Mark
Gender: male
Age: 18
Lives in: UK
Years with Sjogren's: uncertain

About Me: Hi, I'm not sure if i have Sjogren's but have experienced dry eye symptoms for a year. I've just begun a law degree and am determined not to let this beat me - even though life is a constant struggle. I'm glad that I've got my family for support but would really like to chat to someone in a position like my own.

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E-Pal number 2004-185

Name: Cristina
Gender: female
Age: 26
Lives in: New Jersey, USA
Years with Sjogren's: 1 1/2 yrs.

About Me: Actually I have 0 yrs with sjs. My daughter which is 7 has it and was diagnosed in August 03. I also have another daughter 2 and a son 6 (both are sjs free) AND a husband. Married 5 yrs, actually together for 10yrs. We travel to A I Dupont Hospital in DE. which is about 2.5 hrs each way once a month. All her dr's are there-Rheumy, Neurologist, eye dr, dentist, and now she has to get a hearing test. Just to name a few. What I am looking for in an E-Pal is someone to go to with Q's. And not to feel so alone and to hopefully make my daughter's easier. Not only does she have sjs, but also severe stress and horrible migraines. Please help. Thank you.

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E-Pal number 2004-184

Name: Cathy
Gender: female
Age: 46
Lives in: Texas, USA
Years with Sjogren's: 6 months

About Me: I was diagnosed with Lupus (SLE) about 10 years ago. I have an 18 year old son. Just recently diagnosed with SS. Also diabetic and have liver damage as a result of lupus. Looking for someone who has SS and understands what we go through trying to cope with it.

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E-Pal number 2004-183

Name: Doris
Gender: female
Age: 73
Lives in: Pennsylvania, USA
Years with Sjogren's: 4

About Me: What are some home remedies for treating my throat (congestion & sinus) Sjogren's disease. Note: Evoxac is not working; it gives me rifting (most of the time); what HOME REMEDIES could I take? Note: I am an RA patient and fairly functional. Again, Evoxac is not working. I am open to other drug therapy, secondarily. Thank you

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E-Pal number 2004-182

Name: Bev
Gender: female
Age: 45
Lives in: NSW Australia
Years with Sjogren's: 3

About Me: Recently moved from UK (Cambridge) to NSW Australia with my husband. Two children in UK at Uni. Had Lupus since 1988, diagnosed with SS in 2001 and gave up work in 2003 due to chronic fatigue and malaise. Have good and bad days and try to pace myself but even after so many years I am SO frustrated at the curtailed lifestyle. Would like positive chats with like minded people. Love music, people, animals, photography.

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E-Pal number 2004-181

Name: Jenn
Gender: female
Age: 29
Lives in: Ohio, USA
Years with Sjogren's: 6+

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

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E-Pal number 2004-180

Name: Maggie
Gender: female
Age: 48
Lives in: New Jersey, USA
Years with Sjogren's: ~10

About Me: I have many autoimmune problems - triggered after environmental spillage in my area (I was pregnant with a son, now 17, who had Hodgkin's 2 years ago). I have 4 children & am currently finishing nursing school - was a computer programmer & social worker in past careers. Used to love to swim & hike, but feel limited in my physical activities. Love to bake - converting to electric as afraid gas may trigger flares. AN e-pal would be great to share Sjo experiences - just realized recently what havoc it's played on my health.

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E-Pal number 2004-179

Name: Michelle
Gender: female
Age: 37
Lives in: New York, USA
Years with Sjogren's: 3

About Me: Well we're to begin lol. I have had Sjogren's for 3 years now along with fibromyalgia, intercystitial cystitis and endometriosis. Oh and of course IBS. I have a ten year old daughter also. Would love to talk to anyone with this dreaded illness. Take Care Michelle

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E-Pal number 2004-178

Name: Donna
Gender: female
Age: 39
Lives in: New York, USA
Years with Sjogren's: 1

About Me: Hi, I have been diagnosed with Sjogren's recently. But have had immune problems for about 15 years now. I have fibro, cfids, mcs.
I'd like to chat with someone for info but mostly to bond and be friends for life (hopefull)!
Hope to here from ya!

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E-Pal number 2004-177

Name: Angela
Gender: female
Age: 33
Lives in: Michigan, USA
Years with Sjogren's: just diagnosed

About Me: I am a 33 year old female just diagnosed with SJS. I have had problems with my parotid glands swelling for over 2 years. I had the right parotid removed in 2003, and now need surgery for the left. I am new to the SJS issue and would appreciate any information and advice I can get.

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E-Pal number 2004-176

Name: Leigh
Gender: female
Age: 39
Lives in: Georgia, USA
Years with Sjogren's: 2 1/2

About Me: I am a mother of two sons, married for 18 years, work full time for now and have know I had Sjogren's for 2 1/2 years. When I was told I thought, well that explains the minor problems I'm having. Now I am about at the end of my rope. I have been effected in so many ways that sometimes I can't stand the thought of living another day. I would love to have someone who can relate to me. That's all.

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E-Pal number 2004-175

Name: Cynthia
Gender: female
Age: 31
Lives in: Texas, USA
Years with Sjogren's: 3-4

About Me: I am a younger person with Sjogren's. I have learned many ways to cope, however I lack people in my life who understand this illness. I want to make friends with other empathic and compassionate people who feel as I do. Maybe we can meet or be friends, and attend the SSF meetings together. I am educated in Psychology. I have an interest in counseling, shopping, traveling, and writing poetry, however I am always open to new experiences and ideas.

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E-Pal number 2004-174

Name: Helena
Gender: female
Age: 37
Lives in: Minnesota, USA
Years with Sjogren's: 1 1/2

About Me: Hi, I was diagnosed with Sjogren's last year. I'm looking for someone with Sjogren's, who could share pregnancy experience with me, since I'm planning to get pregnant sometime soon. I'm married and have a 4 year old boy. My hobbies are scrapbooking and stamping.

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E-Pal number 2004-173

Name: Anya
Gender: female
Age: 52
Lives in: East Devon, England
Years with Sjogren's: 10

About Me: I am now not working due to this and the associated Fybromyalgia. I have never met anyone with the same thing and its always nice to find out how others make life work for them. I have a sense of humour on my non flare up days...honest! I recently relocated from London to East Devon where I love to walk in the country and enjoy the peace. Some times it can be too peaceful as my partner works shifts and I don't know anyone here! Sociable and gregarious replies appreciated!

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E-Pal number 2004-172

Name: Terri
Gender: female
Age: 41
Lives in: Springdale, Arkansas, USA
Years with Sjogren's: 6 months

About Me: I'm a mom of 4 children 21, 19, 15, 2 years of ages, and to be a grandma in Dec. I was just found out I have SJS a few mouths ago, I would like to talk to someone who can explain it to me and have children also.
I like to make dream catchers, read and write my thoughts down on paper and crocheting. I like to walk also.
I just feel like my life has been turn up side down, I feel a lone and lost right now and I'm scared.

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E-Pal number 2004-171

Name: Amy
Gender: female
Age: 28
Lives in: Illinois, USA
Years with Sjogren's: 1?

About Me: I was just diagnosed last week (positive SSB). I was still planning on more having more children. I would really like to find someone in a similar situation to discuss the baby factor, medication, alternative holistic approach, symptoms, etc. I'm a 3rd grade teacher who took this year off to stay home with our baby (9 mos.).

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E-Pal number 2004-170

Name: Dot
Gender: female
Age: 55
Lives in: North Carolina, USA
Years with Sjogren's: 1

About Me: I was diagnosed with sjs and this my second outbreak, doctors aren't much help, my glands are so swollen that my throat hurts, my eyes, my ears, my teeth all hurt. What can I do? How long does an episode last? Is there something that triggers it? I know someone out there has these answers, please help me. Thank You

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E-Pal number 2004-169

Name: Alex
Gender: female
Age: 14
Lives in: UK
Years with Sjogren's: 1

About Me: I have had primary Sjogren's for about a year now, finding it very hard to come to terms with it, have had lots of tests and I am in and out of hospital as my face swells up. I would like to chat to other people my age.

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E-Pal number 2004-168

Name: Ramani
Gender: female
Age: 40
Lives in: Madhya Pradesh, India
Years with Sjogren's: 3+

About Me: I am a public health physician whose work involves a lot of travel on bad roads into rural areas, in hot tropical weather. I now find I am unable to cope with my work and have to limit several of the things I do. I am looking for any other physician / person whose work involves / involved a lot of travel / physical stress, who have SS and to learn how they are managing. I was fighting the fatigue for months, hoping to overcome it with sheer will power, but now it is getting a bit difficult to manage. As far as I know, there is no support group in India - or is there?

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E-Pal number 2004-167

Name: Rose
Gender: female
Age: 42
Lives in: Ontario, Canada
Years with Sjogren's: in diagnosis stage

About Me: I live in Ontario Canada. I am married. 2 grown sons.
Toronto doctors. Biopsy of lacrimal gland planned. MRI shows thin roof orbit, mass in lacrimal left. Lots of PAIN!
Want to talk to others of what they went through to get diagnosed and alleviate the pain.

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E-Pal number 2004-166

Name: Sherri
Gender: female
Age: 39
Lives in: Pennsylvania, USA
Years with Sjogren's: 2+

About Me: I am 39 y.o. living in Center City Philadelphia, currently out on disability (albeit unpaid) and interested in chatting with someone else with SS/Lupus. It's been a battle all the way and I fear no one really believes that I am sick as I always get the "you look great" line. That's just my Estee Lauder thick coverage foundation. It does work.

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E-Pal number 2004-165

Name: Roberta
Gender: female
Age: 20
Lives in: Canada
Years with Sjogren's: 4

About Me: I just want to talk to someone my age who is experiencing the same thing as me. what their battles are and what the challenges of having this disease at such a young age.

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E-Pal number 2004-164

Name: Patty
Gender: female
Age: 39
Lives in: Virginia, USA
Years with Sjogren's: 1

About Me: I have been diagnosed with SS and fibromyalgia. I have no one to talk to here since I don't know anyone with SS. I have friends who don't understand. I have a small farm with chickens, horses and etc. I have a wonderful supporting husband and 2 boys and 1 girl. I keep children after school. I love to stamp, scrapbook and read. I would like to talk to someone with similar interest.

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E-Pal number 2004-163

Name: Millie
Gender: female
Age: 65
Lives in: California, USA
Years with Sjogren's: 14

About Me: I want an epal of any age, gender or any part of the world to meet and talk about Sjogren's having this disease as long as I have for 14 years, have not met anyone who has it. Interests are country/western music, line dancing, meeting new people and share interests. I stay active, though, retired and would love to keep in touch with anyone who has Sjogren's.

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E-Pal number 2004-162

Name: Lynn
Gender: female
Age: 44
Lives in: Illinois, USA
Years with Sjogren's: newly diagnosed

About Me: I have just been diagnosed with SS, asthma, and Hypothyroid after many years of symptoms. In the past, I have struggled with GI disorders and also have a GERD/ Hiatel Hernia diagnosis among others. I currently work full time in the field of Developmental Disabilities. I am an animal lover and have 2 dogs and a cat. I consider them part of my family. I am looking for people to talk to about this disease as it can be bring out many emotions when first diagnosed. And as much as some of the people in my life may try to understand, it is very difficult for them to do so unless they have gone through similar feelings/experiences.

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E-Pal number 2004-161

Name: Molly
Gender: female
Age: 37
Lives in: Ohio, USA
Years with Sjogren's: 17

About Me: I have been diagnosed with lupus, Sjogrens, Fibromyalgia, depression, Rheumatoid Arthritis and hypothyroidism. I am married with two children ages 5 and 12. I work full time and between my work and family life, I have no energy. I am having major problems with my memory and I think my husband is cheating on me. I am severely depressed and it is a struggle just to get up in the morning. I used to be energetic and happy. I am just tired and sad most of the time and now all of my lymph nodes are swollen all over my body. The dryness is worse and it seems the older I get the harder it is. I would like to chat w/ someone in a similar situation to see how they cope with it all.

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E-Pal number 2004-160

Name:   Sharon
Gender: female
Age: 48
Lives in: Maryland, USA
Years with Sjogren's: 10+

About Me: I'm a professional photographer, and adoptive mother of two daughters from Russia. I was diagnosed with secondary Sjogren's about 8 years ago, about the same time I was diagnosed with late-stage Lyme Disease. I am currently enduring a relapse of the worst intensity I've yet experienced. I'm very interested in "talking" with others who are living with Sjogren's. I'm determined not to have my life be defined by disease, but it's getting increasingly difficult.

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E-Pal number 2004-159

Name:  Kerri
Gender: female
Age: 54
Lives in: Perth, Western Australia
Years with Sjogren's: 1

About Me: I am looking to correspond with people in Perth Western Australia who have SjS. I was diagnosed one year ago but I am sure I had it before that.
I have sore eyes, dry mouth, painful enlarged parotid glands, fatigue, aching joints, etc I have heard from my Aunt in America that there is a Clare living in Perth WA and I would really like to hear from her. If there are any other Perth sufferers I would be happy to share with you.

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E-Pal number 2004-158

Name:   Sharon
Gender: female
Age: 41
Lives in: North Carolina, USA
Years with Sjogren's: Just Diagnosed

About Me: I am a mother of two boy 13 and a girl 10. My husband is a diabetic and works close to a fifty hour week. I sub. teach in two counties. Since being diagnosed my energy is slowly leaving me, I also have lupus . How do people cope with pain dry mouth, no tears, some days I do not want anything to eat just water, not enough for water in the world for me. Can someone lighten me on coping with this. I am the only one in my family who has ever had this.

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E-Pal number 2004-157

Name:   Dorci
Gender: female
Age: 41
Lives in: Arizona, USA
Years with Sjogren's: 2?

About Me: I haven't been diagnosed with SS yet. I've had the dry mouth/dry nose for about 2 years, and was just diagnosed with dry eyes, thyroiditis, high blood pressure, palpitations and am having possible gallbladder/pancreas problems. Still looking for a doctor who is very knowledgeable about SS and how to diagnose it.

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E-Pal number 2004-156

Name:   Freda
Gender: female
Age: 47
Lives in: Southern Califonia, USA
Years with Sjogren's: 7+

About Me:  I have secondary Sjogren's with all that comes with it, insomnia, dry mouth , hypothyroidism, dry eyes, muscles knotting up, joint pain, swelling, and major fatigue now with decreased lung capacity. Married with a wonderful husband who has fibromyalgia and sleep apnea. Both of us were born in Ohio and now live in Ca. Looking to share with some one who not only wants to share hard times due to our illness but also the graces found through it.. :)

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E-Pal number 2004-155

Name:  Elizabeth
Gender: female
Age: 45
Lives in: Pennsylvania, USA
Years with Sjogren's: 10 months

About Me: I am 45 yr. old dx. with S.S. 10 months ago. There are no support groups near where I live. The closest is 1 1/2 hours away. I was an athlete all my life, even on an Olympic level. S.S. has hit me hard physically and mentally. Would like someone my age to share thoughts with about this horrible disease. Thanks

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E-Pal number 2004-154

Name:  Wendy
Gender: female
Age: 54
Lives in: South Australia
Years with Sjogren's: Newly Diagnosed

About Me: Thinking back over the last thirty years or so, I've probably had SS all that time. I have been diagnosed with meniers, migraine, epilepsy, irritable bowel syndrome, depression, anxiety and panic disorders, I have had dry eyes and irritable nose (sinus/hayfever????) forever and the aches and pains that no-one can even begin to understand unless they have experienced them. I am glad to know that it now has a name and that I haven't been overacting to a few minor problems, but I am certainly having trouble coming to terms with it at the moment. I really would like to be able to chat with someone who understands and who can empathise. I work full time and am finding that to be increasingly difficult, as is housework, gardening (non existent now really) and the crafts I enjoy (eyesight seems to be getting much worse). I love my dogs and live on a beautiful property in the hills. I have a warped sense of humour, although it is a bit suppressed at the moment. Hobbies include scrapbooking, genealogy, my dogs, reading, knitting and crochet.

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E-Pal number 2004-152

Name:   Denise
Gender: female
Age: 52
Lives in:  
Years with Sjogren's: 20

About Me: I was diagnosed a few years ago, but looking back, I am pretty sure I had this disease for quite a long time before I knew it. I also have diabetes, hypothyroidism, and fibromyalgia, which I think all stemmed from the Sjogren's. I love to read, would love to be able to walk a lot, but can't and exercise in any form always makes it difficult to do anything for days afterwards.

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E-Pal number 2004-151

Name:   Lynnette
Gender: female
Age: 33
Lives in:   Texas, USA
Years with Sjogren's: 1.5

About Me: I started out trying to shrink fibroids and ended up in a nightmare of pain, agony and premature diabetes. My rheumatologist told me last week that my symptoms were progressing. I am single, no kids and haven't even finished my MPH/MPA yet. Is there a happy ending? I am looking for someone who understands and can wander this maze with me.

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E-Pal number 2004-150

Name:   Barbara
Gender: female
Age: 63
Lives in:   Alabama, USA
Years with Sjogren's: 30, diagnosed in 2002

About Me: I was a young active 60 year old female and all at once I fell apart. My dentist first discovered this. I was diagnosed in 2002 but from the symptoms that I have had since I was 30 I know it has been Sjogren's. I can not tell you the number of doctors that I went to that told me it was psychological. It was hard for me to accept this because I knew I was in pain and I felt terrible.
I am divorced, work in a fast paced office and I live with a Persian cat. Belong to a singles club and we go out dancing when I am able. Some week ends I have to stay in bed because I am exhausted. I want to talk to anyone male or female that understands how devastating this disease can be. Someone that I can relate to. Someone that I can feel sorry for myself and they will know where I am coming from and what I have been through. Most people do not know what this disease is and they think I am crazy when I try to tell them. The joint pain and fatigue is so bad. No one around me knows what this disease is and how ill it can make you.

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E-Pal number 2004-149

Name:   Terri
Gender: female
Age: 47
Lives in:   Alabama, USA
Years with Sjogren's: 1

About Me: I am 47 yr old mom wife nurse with fibromyalgia for several yrs so when new symptoms began, they were pooh poohed as more of the same. In July2003 I had an episode of loss of vision, slurred speech, staggered gait. My employer suspected I was chemically impaired and called my husband to come and pick me up, So begins my long painful, frustrating search for a dx. One yr later I am dx with SS with central nervous system involvement. I would like to chat with others my age, other nurses if possible. I have started Imuran therapy this week. and would like to chat with others that may have tried Imuran.

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E-Pal number 2004-148

Name:   Dee
Gender: female
Age: 36
Lives in:   Maryland, USA
Years with Sjogren's: 7

About Me: Divorced w/3 adult children and 4 grandkids. Spent 15yrs active duty AF, honorably d/c'd in 1994. DX'd w/sjs in 1997. Now at home on disability for uncontrolled hypertension and depression. Physically look like the picture of health, physically feel tired, run down and like I'm a lot older than I look.

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E-Pal number 2004-147

Name:  Maria
Gender: female
Age: 36
Lives in:   AZ, USA
Years with Sjogren's: 4

About me: Hi I'm a mother of 4 children and have been married for 15 years. I used to love to bake and get the house decorated for the fall holidays. It's very lonely not having someone to talk to about Sjogrens. I have a hard time finding people my age with it. Just want to know how they deal with it daily.

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E-Pal number 2004-146

Name:  Dianne
Gender: female
Age: 43
Lives in:  North Carolina, USA
Years with Sjogren's: mother is newly diagnosed

About me: My mother has been diagnosed with Sjogren's Syndrome approx 2 weeks ago. She is very upset. I am currently in nursing school myself and weeks away from obtaining my LPN. I am planning on continuing with school to obtain my RN. After researching this disease I am seriously thinking of going into research.

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E-Pal number 2004-145

Name: Jo
Gender: female
Age: 43
Lives in: Alabama, USA
Years with Sjogren's: 4

About me: I was recently dx w/ Primary Sjogren's. At present I am still trying to find a physician who is knowledgeable in the tx of the disease. My eyesight has been greatly affected and I have not been able to work for 5 months. I was a caterer/event planner. My hobbies are/were photography, scrapbooking, baking, writing 1st cookbook, gardening. I desperately need encouragement and advice on locating right healthcare professionals to help me treat this disease. Thank you for your help!

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E-Pal number 2004-144

Name: Kathleen
Gender: female
Age: 53
Lives in: Canada
Years with Sjogren's: Just diagnosed

About me: I am reading everything I can about this disease. No one in my circle has heard of this. It's difficult to communicate that you feel lousy and that you can't tolerate spicy foods, etc. Have reflux, dry eyes & mouth. Sore knees and lower back. Tired most of the time. Enjoy reading, gardening (just joined a gardening club) and signed up for a horticultural course. Try and get to the gym to lift weights. Wanting to be one of those people who go into remission. Married for 35 yrs. Two married children. Love to hear from someone who is researching Sjogren's and has found some relief.

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E-Pal number 2004-143

Name: Sally
Gender: female
Age: 52
Lives in: 
Years with Sjogren's: possibly 4/5

About me: I am interested in others that may have this syndrome and the many varied symptoms particularly neuropathy and unexplained rashes or hives. Any possible explanations for these mysterious symptoms are also welcome.

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E-Pal number 2004-142

Name: Patricia
Gender: female
Age: 62
Lives in: California, USA
Years with Sjogren's: 15

About me: I have had SJS for many years, but was just recently diagnosed.
I have severe pain, and great difficulty walking. The fatigue is overwhelming, but I have the most amazing husband who takes amazing care of me. I love animals and have 2 macaws. 1 dog, 1 cat. and a fish named Trout. I have a lesion in my spinal cord. I am still working as a Graphic Designer and it takes my mind off the pain, but I know it could be so much worse.

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E-Pal number 2004-141

Name: Ruth
Gender: female
Age: 39
Lives in: Texas, USA
Years with Sjogren's: 4

About me: I am a formerly active single parent now with a 13 year old. I probably had this illness much longer than I know but refused to accept it because from everyone's opinion I looked like I was healthy. I am having trouble breathing: called hyper-inflation of the lungs. Never smoked in my life. I am determined not to give up on recovery and would love to chat with anyone who might have similar symtoms.

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E-Pal number 2004-140

Name: Kathy
Gender: female
Age: 42
Lives in: Ohio, USA
Years with Sjogren's: 14

About me: Hello, I am a 42 yr old woman. Just recently got married to a the best guy in the world..!! I have been dx with lupus (sle), Sjogren's, Raynaunds, and fibromyalgia, etc...plus the crap that goes with it all..;( I have 3 wonderful teenagers, and a new step son of 8 the teens ages are 19, 17, and 15. I am so proud of my children. They have been through so much with me. I have started with a new dr. and he is thinking my Sjogren's is more primary...and the more research I do I think he may be right...but I have been on the roller coasters with drs...and dx...but I can't work because of my health...my husband...I have an understanding one...thank goodness...and says I should just stay home take care of myself and him and the kids...house...etc. and not worry about working...I am now at a time in my life where I am going to apply for disability. hope to talk and become friends with other suffers...and it would be great to find someone in my area.. well gentle hugs to all...I look forward to meeting you...Kathy

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E-Pal number 2004-139

Name: Anna
Gender: female
Age: 47
Lives in: Ireland
Years with Sjogren's: 15

About me: Hi there, I would love to talk with other Sjogren's sufferers. I have had the awful symptoms which really became bad after my youngest of 4 children was born 15 years ago. Since then I have been sent to Physician after Physician with no definite diagnosis as the antibodies do not show up in my blood. I am waiting for an appointment with a Rheumatologist here in Ireland. Would love to share with someone my age. :)

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E-Pal number 2004-138

Name: Lynne
Gender: female
Age: 45
Lives in: Newcastle, England
Years with Sjogren's: newbie

About me: I live in the North East of England, I am looking for new friends who understand what it's like to live with an auto immune illness. I have had Rheumatoid Arthritis for almost 18 years or so, looking back I can now see that the Sjogren's has been coming on over the last few years, I had never heard of it until my GP told me and arranged a review with a rheumatologist. I have a very supportive partner and daughter, I would be lost without them. I have been told that I am too independent for my own good ... lol... I have to admit that it's true! I have varied interests including cross stitch, music, reading etc. I am hoping to get a local support group going in my area for people with auto immune illnesses.

I would like to hear from friends anywhere in the world and anyone who lives in the North east interested in getting a support group going in our local area.

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E-Pal number 2004-137

Name: Dana
Gender: female
Age: 31
Lives in: Canada
Years with Sjogren's: not dx'd yet

About me: Just looking to chat with people who have or are not dx'd yet.
I am married, have one son and work full time. My life has changed in the last year with being dx'd with Fibromylagia and CFS and now I worry about SJS. I am hoping to start next week with testing....have dx'd with very dry eyes.
love to hear from you!

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E-Pal number 2004-136

Name: Mary
Gender: female
Age: 41
Lives in: Florida, USA
Years with Sjogren's: 5

About me: I am a single mother of an 8 year old boy. I work full time with children. I am active and try not to let Sjogren's get the best of me. I was diagnosed 5 years ago, with fatigue, dry eyes, mouth. I work out 5 days a week and try to stay flexible. I am on a lot of medications. Tried punctal plugs but they fell out. Have recently been diagnosed with reflux. I continue to be frustrated by the extreme amount of medications I have to take and the cost of them. My insurance company does not have a great list of Rheumatologists so I am looking for answers on my own. Would love to chat with someone who I can sound off ideas with.

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E-Pal number 2004-135

Name: Willa
Gender: female
Age: 42
Lives in: Texas, USA
Years with Sjogren's: 1

About me: I'm 42 yrs olds / single with a son 9, I love sports, I played softball, basketball and bowled until Sjogren's came along. I'm looking for someone who can help me to better understand what doctor can't, how to live with Sjogren's.

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E-Pal number 2004-134

Name: Barbara
Gender: female
Age: 52
Lives in: New Hampshire, USA
Years with Sjogren's: don't know

About me: Hi- I am Barbara. Have had dry mouth off and on for a couple of years. I never thought much about it an it just sort of came and went. When I went into menopause I developed these hives that would come and go whenever they felt like it. I took medicine that gave me dry mouth but I had to take it for the hives. Then I stopped taking all the allergy meds because I couldn't stand the dry mouth! I then discovered I had dry mouth no matter what!!! I went to a DR. in Boston I had blood work done- no other autoimmune diseases according to the blood work. I am no sure what I have. Now I feel the dry mouth is worse then the hives. I have two grown children and I am in the education field so I have to talk allot. I am out for the summer and was quite upset to hear about Sjogren's! I don't know if I have it or not. I would love to talk with someone. I do take Salagan and it does help but only lasts for a couple of hours. Also concerned about my Teeth. Looking for any help or advice I can get. Please write!

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E-Pal number 2004-133

Name: Cathy
Gender: female
Age: 38
Lives in: Michigan, USA
Years with Sjogren's: 2 months

About me: Hello out there...
Newly diagnosed with SjS and am currently seeing 4 different Dr.s at the same time. Sometimes 2 visits a week. Seems I'm having a reaction to Plaquenil. Just had punctal implants for dry eyes which seems to help. My first symptom was alopecia which started last October for which the biopsy was positive for lupus characteristics although not confirmed yet. Having many symptoms as of late but not sure of they are related to the medication reaction. I have been married for 22 years now and have four children and a grandson. I currently work as A Director of Nursing in a long term care facility and am having some trouble with the commute and just staying focused. My family is very worried about me and I'm not sure how to make them feel better as I have always been the strong one and organizer. I have a great sense of humor and actually don't have any current hobbies as I have very little time. I guess my current hobby is going to the Dr. Ha, Ha.. I would like to find an E-Pal to exchange information with and share everyday experiences with as there seems to be much more to this diagnosis than I first thought.

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E-Pal number 2004-132

Name: Jasmin
Gender: female
Age: 19
Lives in: Colorado, USA
Years with Sjogren's: recently diagnosed

About me: I am just looking for someone close in age who can tell me what it is like to live with Sjogren's.

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E-Pal number 2004-131

Name: Gina
Gender: female
Age: 34
Lives in: Texas, USA
Years with Sjogren's: not yet diagnosed

About me: I haven't been diagnosed with Sjogren's Syndrome yet. I've been seeing a rheumatologist for seven years and the diagnosis is either RA, SS, or Lupus. I could go years without an actual diagnosis or my bloodwork can one day show something - so for me it's day to day with not knowing if or what I have. I take plaquenil which greatly helps.

I'm married with a seven year old son. My interests include reading, walking, scrapbooking, and playing board games. I would love to chat with anyone who wants to. Thanks!

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E-Pal number 2004-130

Name: Phyllis
Gender: female
Age: 68
Lives in: Pennsylvania, USA
Years with Sjogren's: 7

About me: I have had SS for 12 years or more. Five years trying to find out and 7 years in treatment. I love to read mysteries and I sew, knit, crochet and when possible care for my 1 yr. old Great-grandson Steven. I am active in our local kennel club, serving on the board and as trophy chairman for our big show in July. I have been having a problem with walking lately and find it is getting worse. I feel as though I should walk right, but I keep staggering like a drunk. I try to explain to my friend what is going on, but I'm sure she doesn't know. She just keeps telling to stay off the bottle. Of course I have an allergy to alcohol and caffeine. I have 4 children, 8 grandkids, and 6 great-grandkids. My husband Dick just retired at age 70. I would like to talk to SS people who can understand and maybe help me cope better. I'm so tired of being told, every time something comes up, that oh. it's just the Sjogren's. Thanks you and I look forward to e-mailing anyone who will talk to me.

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E-Pal number 2004-128

Name: Pat
Gender: female
Age: 52
Lives in: Florida, USA
Years with Sjogren's: 7

About me: I've been diagnosed with Sjogren's/fibromyalgia/IBS/GERD for seven years.
I try to work around it, when it acts up, I don't do as much.
I like gardening, working around the house, cooking and baking for my husband of 33 years Dave.
Have two sons, who are married, and one grandson age 2 who is the apple of my eye.
I used to be signed on to the email, but have been away from my computer off and on due to helping my parents who have had poor health and live next door to us.
Am not working outside the home right now, and would enjoy having someone to chat with online and compare notes with. Feel free to write.

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E-Pal number 2004-127

Name: Laura
Gender: female
Age: 43
Lives in: Pennsylvania, USA
Years with Sjogren's: 10

About me: I'm a 43 year old married mother of two teens and I work full-time as a defense medical malpractice paralegal. I have S.S., Rheumatoid arthritis AND Polymyositis. I love politics - I'm conservative - and current events. I am struggling to keep working full time despite increasing muscular weakness and exhaustion. I don't know how long I can keep doing this. I would like someone of similar interests, if possible, who may have some insight on how to keep on working or how to know when it's time to quit, and would enjoy venting about stupid insensitive people who stare and say rude things when my husband or kids have to help get me out of a chair in a restaurant, etc. We all just need somebody to lean on.....I also have a twisted sense of humor, thank God, to get through this and would be thrilled to find someone whom I can make laugh once in a while.

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E-Pal number 2004-126

Name: Leah
Gender: female
Age: 68
Lives in: Washington, USA
Years with Sjogren's: ?

About me: Just had my first blood test to find out for sure if I have Sjogren's. Do have dry mouth symptoms and lately have noticed dry eyes in the morning. Have been having shoulder pain which I had decided was old age and ignored - now I wonder. Am a widow with one grown daughter and two granddaughters. Did have breast cancer 3 years ago and am doing great and figure it is gone. Since I have never heard of this disease before am interested to find out what it is and if the tests are positive what will help me stay well as so far am pretty healthy.

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E-Pal number 2004-125

Name: Kathy
Gender: female
Age: 48
Lives in: New Jersey, USA
Years with Sjogren's: 20

About me: I have been married for 24 years and have 4 children (22,19,18 and 14). I am still able to work full time as a legal secretary. I enjoy my garden and genealogy research. Looking for someone who understands SS and taking care of a family with a sense of humor.

~~~~~

E-Pal number 2004-124

Name: Norma
Gender: female
Age: 32
Lives in: Scotland, UK
Years with Sjogren's: 2+

About me: Am a very tired and bored mum of 2 girlies looking for someone to share laughs and experiences with. Love reading and music. Miss not being able to work due to SJS it is fairly uncommon here in Scotland!!

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E-Pal number 2004-123

Name: Kristina
Gender: female
Age: 30
Lives in: Texas, USA
Years with Sjogren's: 3

About me: I am a stay-at-home mom to a lovely 5 year old daughter. I have been married to my wonderful husband for 10 years. I was diagnosed with Lupus 3 1/2 years ago and Sjogrens 3 years ago. I had dry eyes and mouth, until March 2003 when the left side of my body began twitching. Then my left leg became so painful I could not walk. I still use a cane. I continue to get worse. My Doctor thinks that my Central Nervous Systems is being attacked. That I might not have Lupus just Sjogrens. I would love to talk about Sjogrens, kids, hobbies, Lupus or other Chronic illness. Give my husbands ear a break. :)
I hope to hear from you.

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E-Pal number 2004-122

Name: Lisa
Gender: female
Age: 26
Lives in: Leicester England
Years with Sjogren's: 2

About me: HI! I have a 6 yr. old son who is a star and I live with my partner. I'm between doctors at the moment as I sought a second opinion because of his 'Go home and get' on with it attitude. My symptoms seem to be getting worse. Especially the joint pain, fatigue, dry eyes/skin. Would like to talk to people around my own age and/or with similar problems. Would also like know, if anybody just falls down because of their legs giving way, it has been a problem for me for quite few years and wondered if any other sufferer has this problem.

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E-Pal number 2004-121

Name: Debbi
Gender: female
Age: 46
Lives in: Massachusetts, USA
Years with Sjogren's: 5+

About me: I have a wonderful husband of 19 yrs. 3 children and 1 grandson. I work full time. I've had sjs for a number of years however not confirmed until 5 yrs ago. I couldn't open my eyes. My ophthalmologist is my best friend. He told me the tests to have done and hooked me up with my rheumatologist. Lots of annoying ailments. I'm generally an active happy person but sometimes this really gets me down. I hate to complain. My hobbies are bingo, the gym, yard work (kills me but I do it anyway), movies, the beach and then some. I'd love to have some on-line friends to relate with.

~~~~~

E-Pal number 2004-120

Name: Joyce
Gender: female
Age: 52
Lives in: East Hampton, NY, USA
Years with Sjogren's: newly diagnosed

About me: I am a disabled grandmother and mother, I love being with my grandchildren. I do ceramics and like to paint on fabrics and write poetry. I crochet, badly LOL. I have been married for 35 yrs. I have been very ill for about the past five yrs. Just recently my neuro dr., did the blood work that found the Sjogrens. I have fibromyalgia and diabetes already also osteo arthritis and stenosis. I live in pain daily, I would dearly love to talk to someone who can help me cope with this disease and help me get help and to understand what's happening to me. I have a good sense of humor and I think that helps me get through most days. Hope to hear from someone soon. Joy

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E-Pal number 2004-119

Name: Deb
Gender: female
Age: 43
Lives in: Australia
Years with Sjogren's: recent diagnosis

About me: I would love someone with a sense of humour to chat to about symptoms of sjogren's. I love reading, art and music. I have been married for 22 years and have 3 children ages 21, 18 and 12. Just finding out more about sjogren's and sharing experiences with someone else would be great!

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E-Pal number 2004-118

Name: Anita
Gender: female
Age: 62
Lives in: Pennsylvania, USA
Years with Sjogren's: diagnosed 3 mo' ago

About me: I've had a positive test for Sjogrens 2 months ago, after years of knowing something definitely was wrong. I finally found a sympathetic doctor who tested me immediately after realizing I had a family history of "Lupus". What a relief to know I was right all along. I suffer from "neuropathy", mouth sores, fatigue. Would like to hear from others what resources help. On good days I enjoy "watercolors, gardening, and grandchildren. Seems like an awful lot of us like "gardening", since they claim this "syndrome" is possibly caused by the "environment", maybe there's a connection.

~~~~~

E-Pal number 2004-117

Name: Doris
Gender: female
Age: 48
Lives in: Scotland
Years with Sjogren's: 14

About me: I have been a single parent of 4 daughters (19, 17, 16, 12) for 12 years. I am self-employed and work from home which makes life a bit easier. The isolation is unbearable. I now have time for me but no energy. I said 14 years with Sjogren's as this is how long I have had problems. Doctors said it was stress related until 7 years ago when they diagnosed Mixed Connective Tissue and Raynaud’s now it’s Sjogren's.

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E-Pal number 2004-116

Name: Agadir
Gender: male
Age: 40
Lives in: Morocco
Years with Sjogren's: newly

About me: First! l thank so much for all help u give to us.
I'm from morocco and live in Agadir City, my age 40 years old,  looking for E-Pal from any country.
hobbies collect stamps of all the world I've 10000 ones, l like to cook, to movie get new friend ship and also l like to travel.
I am looking for someone who understands Sjogren's and learn me. sorry my English is poor.

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E-Pal number 2004-115

Name: Vicki
Gender: female
Age: 55
Lives in: New York, USA
Years with Sjogren's: Unsure, feels like forever

About me: A bit about me, I'm 55, 2 grown sons, a grand daughter and been feeling lousy for several years now. Had no idea what the problem was until this week. Always seemed to be a "reason" for the symptoms I was having, i.e., dry eyes due to no ventilation at the office, dry mouth, well my work is talking and listening all day, aches and pains, must be arthritis or nerve related, etc. etc. Was beginning to feel it was all stress related and in my head. The doctor tells me it's not, he's got the proof now. Part of my problem is I don't look or act like someone who feels as lousy as I do. Seems pointless to complain. Seems difficult for others to understand chronic pain from someone who looks "like a teenager" and is so upbeat most of the time. I try to motivate and inspire others to have a positive mental attitude so I try and practice that every day. Some days it's harder than others as you know. It would be great to make some friends who understand chronic discomfort, pain, etc. who also try to maintain a positive attitude. The more pain I'm in the more I need to make others laugh. Keeps me from crying. I'd like to know the "tricks" if there are any for coping with this thing as effectively as I can. So how are you all doing? What can I expect? I get the feeling from what I've read this is very different for each of us with a lot of commonalities. Thanks for your help and interest.

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E-Pal number 2004-114

Name: Carolyn
Gender: female
Age: 62
Lives in: North Carolina, USA
Years with Sjogren's: 8

About me: Had symptoms of Sjogren's for six years; diagnosed in 2002 with Primary Sjogren's Syndrome. Have dry eyes, mouth,
pain in salivary glands but is controlled well by Evoxac.
I count on my faith to pull me through; I am a Catholic.
At the present time I have trouble driving, especially at night. Otherwise, I'm O.K. I know there are people a lot worse off than me.
My mother had Lupus. There may be a genetic cause although I'm wondering if it is viral. I had H. Pylori virus for almost twenty years.
I'd like conversing with anyone at all that I might help.

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E-Pal number 2004-113

Name: Brenda
Gender: female
Age: 49
Lives in: USA
Years with Sjogren's: not confirmed

About me: I am looking for an E-Pal in N.C. that can direct me to a good doctor. I have a possible diagnosis of Sjogrens, everything else has basically been ruled out. The doctors in my area just don't seem to have any answers. I would appreciate any suggestions. I just want to know what might work for the dry mouth and fatigue. I have been financially drained going from one doctor to another without answers. Any information you can share would be helpful since I don't know very much about the disease. I would love to hear from anyone with suggestions or advice on what type of doctor to consult next. thanks

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E-Pal number 2004-112

Name: Suzanne
Gender: female
Age: 49
Lives in: Pennsylvania, USA
Years with Sjogren's: recently diagnosed

About me: I am looking for someone to share information on ss and to be an e-mail friend. I am interested in family, world politics, and music. I am forty-nine years old and female. I am divorced many years with two grown children. My son is in Germany, he is in the Army. My daughter presented me with my first grandchild, Abbigail, two years ago. I used to be able to garden, which I still like to do when I am feeling okay.

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E-Pal number 2004-111

Name: Michele
Gender: female
Age: 48
Lives in: Iowa, USA
Years with Sjogren's: 2 months

About me: I am looking for someone or anyone who might know how I am feeling. I am a very caring individual and a good listener. I care about everyone. I live on the border line of Iowa/Minnesota on and acreage with my hubby and 4 terriers. I love country living. I watch a lot of Court TV and CNN. Enjoy reading and relaxing. Now. I am extremely exhausted all the time. I am just looking for someone who understands how much pain I am in.

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E-Pal number 2004-109

Name: Tina
Gender: female
Age: 33
Lives in: New Jersey, USA
Years with Sjogren's: 8

About me: Hi, I was diagnosed 8 years ago w/ SS, RA, and Raynauds. I live a slower life than what I was used to but I live each day as well as I can. I work full time and try to workout at least 4 times a week, even if it's a 1/2 hour walk on the treadmill. The exercise helps w/ fatigue and joint pain. I suffer mostly from severe dry eyes, dry mouth and swollen salivary glands. I found that when I cut sugar out of my diet, the dry mouth and improved slightly and I haven't had thrush in 2 years. I'd love to talk w/ anyone who wants to swap remedies or just vent about the illness, I know how stressful and depressing it all can be but staying positive does help. I'd love to hear from you.

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E-Pal number 2004-108

Name: Jan
Gender: female
Age: 51
Lives in: Spokane, Washington USA
Years with Sjogren's: 13+

About me: Hi, I was diagnosed in 1991 but had so many symptoms before that. I will briefly list what I have: Sjogren's, fibro, cfs, diabetes, neuropathy in feet/legs/arms & hands, narcolepsy, hypo-thyroid, asthma, Meniere's ear syndrome, reflux, and panic disorder. I'm homebound most of the time but I'm out-going, friendly, and have a great sense of humor. I love Scrap booking, Writing, Reading, and all the time I can spend with my 6 gr. girls. And married almost 33yrs.

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E-Pal number 2004-107

Name: Nancy
Gender: female
Age: 61
Lives in: Pennsylvania, USA
Years with Sjogren's: not fully diagnosed

About me: I have not been fully diagnosed yet. Had a positive ANA. Dr. wanted to put me on a anti-depressant/sleeping pill. At the present I have severe dry skin (keratosis pilaris) joint pain, muscle aches, fatigue, sometimes severe. I am having dental problems and some facial pain around lower jaw and around my ear. The worst of my pain is in my spine, neck hands and feet, and a lot of pressure in my head. I have thick tendons in my palm side of my hands. If anyone would like to e-mail me I would appreciate it.

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E-Pal number 2004-106

Name: Allison
Gender: female
Age: 22
Lives in: Florida, USA
Years with Sjogren's: 3

About me: It took me 11 frustrating years to finally get diagnosed with Sjogren's Syndrome. I was 19 years old, in my second year of college when someone finally gave me the answers to the dry eyes, joint pain, and fatigue I've had most of my life. I would like to talk to someone around my own age who is dealing with this same battle. I look forward to hearing from you!

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E-Pal number 2004-105

Name: Kim
Gender: female
Age: 37
Lives in: Nevada, USA
Years with Sjogren's: just diagnosed

About me: Hi, my name is Kim and I have just been diagnosed. I would like to find someone I can chat with regarding this-talk about the good days and the bad days. I love to read, hike, travel, garden, and shop. I am married and we have 4 dogs-these are our kids.

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E-Pal number 2004-104

Name: Holly
Gender: female
Age: 31
Lives in: Minnesota, USA
Years with Sjogren's: newly dx

About me: Hi, I am Holly I just found out I have sjs. I am married with a 10 month old son. I work part-time. I am looking for someone to talk to because I am so confused about sjs.

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E-Pal number 2004-103

Name: Angela
Gender: female
Age: 50
Lives in: Alberta, Canada
Years with Sjogren's: 8

About me: I am the mother of 4 almost grown children, a disabled teacher. I still garden, play flute, and surf the internet. I love to read, esp, sci. fiction and fantasy. My boys play hockey, my daughter figures skates. Besides secondary SS, I have RA, asthma, hypothyroidism, IBS, and Bipolar Disorder. Most diseases are under control, except the dry mouth.

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E-Pal number 2004-102

Name: Heather
Gender: female
Age: 53
Lives in: Canada
Years with Sjogren's: 7

About me: I have primary SJS for over 7 years now would like to hear from a positive fellow sufferer to chat and share knowledge about this illness. I enjoy reading autobiographies, gardening, crafts, watching good movies and taking care of my 2 furry friends {dogs}.

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E-Pal number 2004-101

Name: Anthony
Gender: male
Age: 36
Lives in: UK
Years with Sjogren's: 4.5

About me: I have had dry eyes for about 4 years without any other symptoms but recently I have been diagnosed with SS and have developed a whole lot more. I now have aching joints, dry mouth, fatigue and feel yucky all the time.
I am married with 2 boys 4 and 2 and we are expecting our third child middle June. I find it very hard to talk of my illness I feel like a hypochondriac. I would like to chat with anyone about SS and hope to get some help with symptoms.

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E-Pal number 2004-100

Name: Lorena
Gender: female
Age: 60
Lives in: South Carolina, USA
Years with Sjogren's:

About me: In Jan. 2004, Drs' put the name Sjogren's to what I have been suffering with in various stages for approximately 12 years along with osteoarthritis. I am now showing symptoms of what I'm guessing is peripheral neuropathy. I care for my husband who has Parkinson's syndrome and work full time. I enjoy reading and playing with my three (four-legged) children (dogs) the boys are Gordon, Taylor. Tatum is our baby girl, she believes she is human. We live in a small southern town and especially enjoy this time of year with the flowers blooming. We have a garden in our back yard with over 400 varieties of daylilies. I am interested in an E-pal who shares similar interest and who can advise me as to some of their experiences with Sjogren's.

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E-Pal number 2004-099

Name: Catherine
Gender: female
Age: 43
Lives in: Maryland, USA
Years with Sjogren's: 7+ years

About me: I was diagnosed with Sjogren's several years ago. Fatigue, muscle aches, and hair loss are my newer symptoms. Suspect other autoimmune but no dx yet.
Have two kids, ages 7 and 4; work part time.
I try to exercise every day and that does really help. I'd love to hear from others about how to make the most of my limited energy, and how to stay positive when this disease can be so frustrating!

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E-Pal number 2004-098

Name: Sue
Gender: female
Age: 50
Lives in: VIC Australia
Years with Sjogren's: I am a relative of a sufferer -4years

About me: My cousin Anne is 50 she has primary Sjogren's and is suffering badly at the moment. She has suffered from chronic eye problems among others In the past 6 months her condition has deteriorated, she has little or no feeling in her feet and terrible pain in all joints and now her hands and fingers are losing feeling. Diagnosis is peripheral sensory nerve damage that cannot be recovered and Drs do not know what to do to arrest it short of keeping her comfortable. This is a depressing and bleak outlook and she seeks someone to talk to.

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E-Pal number 2004-096

Name: Raymond
Gender: male
Age: 60
Lives in: OREGON, USA
Years with Sjogren's: 25 years

About me: I just moved to Portland, Oregon with my wife. I work at a great non profit with a wonderful staff. I have both RA and SJS. The SJS has only affected my eyes. I'm looking to correspond with an upbeat person who wants to talk about living with limitations. Talk about home remedies, successful experimentation, etc. would be welcomed. I hope to lend an ear and borrow one in return.

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E-Pal number 2004-092

Name: Barbara
Gender: female
Age: 57
Lives in: Texas, USA
Years with Sjogren's: 1

About Me:  This is all new to me and I want to find a pal that can relate to the problems without being depressing. I work full time (sorta) and try to be healthy and need to know more about what is and is not related to the SjS.

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E-Pal number 2004-091

Name: Jenny
Gender: female
Age: 25
Lives in: New York, USA
Years with Sjogren's: Just Diagnosed

About Me:  I am 25 years old, and I am getting married 5/28/04. I was just diagnosed with Sjogren's and I am very concerned. The symptoms I have been having are infections in the parotid glands. I'm looking for someone who is having the same symptoms as me and someone that can assure me that having this condition can tell me we can live normal lives. :O( 

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E-Pal number 2004-088

Name: Wendy
Gender: female
Age: 32
Lives in: California, USA
Years with Sjogren's: 6 months

About Me:  Hello, my name is Wendy. I am 32 years old with a 7 year old little boy. I am a freelance court reporter. I love my job, but I haven't been able to work lately because I have been feeling so yucky. I am hoping to get this under control so that I can get back to a regular routine. I love to ice skate, take walks, and spend time with my family. I was recently diagnosed with Sjogren's Syndrome. I am looking for a pal to share things with, not just about our disease but about life too. Hope to hear from you soon.

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E-Pal number 2004-087

Name: Jo
Gender: female
Age: 61
Lives in: North Dakota, USA
Years with Sjogren's: 3

About Me:  I live alone with my dog and 2 cats. I work full time as a nurse with the mentally challenged. I have osteoarthritis, fibro, and now this. I was recently dx with s.s. 3 yrs ago I started having this sores in my mouth. I thought it was thrush but it didn't go away after the antibiotics it continued with the sore mouth and burning tongue. I haven't been able to enjoy a meal since. I've seen several drs with no results. I finally found one. He started me on this med Evoxac. I got immediate results and am now able to at least talk without the cotton mouth. I sleep better. It's nice to not wake up with the dry mouth. My passion is golf, home projects and crocheting. Looking for a pen pal to share with.

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E-Pal number 2004-086

Name: Melissa
Gender: female
Age: 50
Lives in: Michigan, USA
Years with Sjogren's: 1

About Me:  I have been diagnosed with Sjogren's, RA, and Fibromyalgia.
I have been single most of my life, with a 24 year old daughter. I am employed as a special education teacher, and hopefully I will be able to continue. I have always been an independent caretaking type and this illness has blown my mind. Am looking to communicate with someone who really understands what living with this is like, and maybe to support each other along the way.

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E-Pal number 2004-085

Name: Hermes
Gender: male
Age: 30
Lives in: Brasil
Years with Sjogren's: +1

About Me:  I have dry eyes , they are always red. That's make me feel bad. Know I discovered the diseases and I don't know what can happen, and I don't know how to treat this disorders, if you can help me, please contact.

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E-Pal number 2004-084

Name: Christina
Gender: female
Age: 40
Lives in: 
Years with Sjogren's:

About Me:  My interests are doing things with art and music. I have been limited to those things now having some symptoms of Sjogren's disease. I am looking for someone to share symptoms with. I have problems with dry mouth and eye, throat and also very underweight, extreme fatigue and some joint pains.

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E-Pal number 2004-082

Name: Sherry
Gender: female
Age: 48
Lives in: Michigan, USA
Years with Sjogren's: 1

About Me:  Would like to share information and find out more information with someone else who has this disease. I sew, craft and quilt. Live on a mini-farm and am a wife, mother and grandmother.

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E-Pal number 2004-080

Name: Sharon
Gender: female
Age: 57
Lives in: New York, USA
Years with Sjogren's: 5

About Me:  Hi, I've had a rough passage with Sjo. in my lungs &liver, SLE, Lupus, RA, Osteoporosis from meds, i.e. Prednisone & Methotrexate, debilitating fatigue/pain that has changed my life and I am trying to fight it (LOL), but sometimes I can't. Before diagnosis, I was very active and had a good life. I had a very pressured job as a paralegal but had to stop working. I try to exercise, I have a treadmill, but don't seem to use it as often as I should. I run out of energy. (I'm too tired to go clothes shopping and that used to be my #1 pastime). I am thinking about buying the Pilates machine, but hear that it's not too good for atrophied muscles. I give up lol. Hobbies: I love Broadway shows, used to love tennis, was a new golfer play the piano/keyboard by ear, avid reader. I hope to find people in similar situations where we can motivate each other and give one another good advice, I enjoy helping others.

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E-Pal number 2004-078

Name: Nancy
Gender: female
Age: 53
Lives in: Colorado, USA
Years with Sjogren's: 20

About Me: I love gardening, reading, p/cards, cross stitch, horseback riding, playing jokes on family and friends. Brian, our son is married w/3 kids, Tracy is engaged. "Silky" our Shihzu loves "Animal Planet" & "America's Funniest Home Videos". It's a real hoot to watch her watching her shows. That would put anyone in a good mood.

My diagnosis: I got bored being normal....so I ran after fevers and caught them; ran on and found dry mouth (salagen), sped on with my love of life but didn't see the brick wall ahead of me....fatigue, pain, sleep deprivation, neuropathies, vision changes and dry eyes....(broke down some of the bricks with (neurontin yeah!!!!) I had tear duct plugs put in and dove into the liguid gel pool for my eyes and I was in ecstasy;) Tried to run again but I had tuned into the tortoise not the hare. I dread any twinge, hickup, or burp because just like the rest you, I think now what's happening? Lets talk, compare, whine, cry, perservere and always lastly laugh!

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E-Pal number 2004-077

Name: Sandra
Gender: female
Age: 40
Lives in: New Zealand
Years with Sjogren's: 4

About Me:  I am a positive person making the most of my life, and not allowing my diseases (SS, SLE, RA, pernicious anaemia) to control what I want to do. I would love to hear from others who are not letting their illness beat them. I am currently working as a High School Librarian but plan of moving overseas to teach English as a foreign language.

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E-Pal number 2004-072

Name: Maria
Gender: female
Age: 53
Lives in: Portugal
Years with Sjogren's: 4

About Me: I would like to be able to talk to someone who understands this problem and cares. I love my job and I love traveling. I don't do it so much now. I have a house in the beach and I love to be there. I have a little she dog . I enjoy reading, swimming and going for walks.

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E-Pal number 2004-070

Name: Jane
Gender: female
Age: 53
Lives in: Alberta , Canada
Years with Sjogren's: 6 months

About Me: Hi. I am a single female recently diagnosed with primary Sjogren's. My main problems are dry mouth and dry eyes. My passions are playing golf and spending time with my dog, Jay. It would be great to chat with others who have primary Sjogren's and hear how you are dealing with the uncertainties of this chronic disease.

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E-Pal number 2004-068

Name: Zulma
Gender: female
Age: 64
Lives in: Key Largo, Florida, USA
Years with Sjogren's: 5

About Me: Widow, work fulltime, religious, enjoy writing, reading, gardening, drawing, painting, grandmother, like to spend time with my family once/week. My main problem with Sjogren's is dry mouth, use eye lubricants for light dry eyes. My diet changed - have problem with some foods - would like to communicate with anyone who would like to communicate with me.

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E-Pal number 2004-064

Name: Arlene
Gender: female
Age: 53
Lives in: New York, USA
Years with Sjogren's: 3

About Me: I am a happily married mother and farm wife. I wish to be supportive for others and to be supported. I live in NY State on a farm. I like reading, canoeing , meditating, and gardening. My age is 53 . My life is much more limited now but I try to be positive.
I will answer all e mails that I receive.

~~~~~

E-Pal number 2004-063

Name: Joan
Gender: female
Age: 50
Lives in: Alabama, USA
Years with Sjogren's: 12

About Me: Greetings! I have mild problems with dry mouth/dry eyes but experience very painful flares of parotid gland swelling which presses on nerves in my face. When this happens, I just have to wait it out on pain pills. Anyone else have similar experience? I'm hoping for a pal who is experiencing parotid gland pain or facial pain. Does anything help? My hobbies: play piano, sing, write songs, love to read, walk, flower gardening, playing w/ our Westie, Buddy. Have been married 31 years to a great guy....we are both very involved in our church. We co-teach an adult S.S. class and I edit our church newsletter monthly. I was dx with Sjogren's from a lip biopsy. Last week a NEW rheumatologist did a tearing test "just to be sure".....I wanted to bite him!

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E-Pal number 2004-062

Name: Jackie
Gender: female
Age: 48
Lives in:  Ontario, Canada
Years with Sjogren's: 2

About Me: I've been married for 26 years with two girls 15 and 18. I have been volunteer at my kids school for the past 13 years. I work, enjoy sewing, reading, crafts, exercising and much more. I 'm always in a good mood and enjoy helping people. I was diagnosed with Sjogren's 2 years ago. I had problems 3 years prior to my diagnose. I've had severe problems with my eyes and right side of my face. I have joint pain and fatigue and forget names, or things or words. Last November I had radiation in my eyes to help swelling that damaged my optical nerve in both eyes. I would like e-pals to talk to about what they are going through and share my experience. I do not know anyone who has Sjogren's so I would enjoy making new friends. Thanks Jackie

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E-Pal number 2004-061

Name: Denise
Gender: female
Age: 44
Lives in: Redditch England
Years with Sjogren's: 5

About Me: Hi, my name is Denise I am married to Andy for twenty-one years and have two children James 14 and Paul 10. I am looking for someone to chat to that as Sjogren's syndrome dry eyes dry mouth fatigue and muscle pain to see how they cope with it.

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E-Pal number 2004-060

Name: Debbie
Gender: female
Age: 45
Lives in: Texas, USA
Years with Sjogren's:

About Me: I'm married and we have 2 daughters & 2 grandkids. I like to garden. We have a small yard and it takes a while to get it nice but its coming along .we also have 3 dogs and 4 cats. I also have numb hands, legs, and some toes. I would like to have a pen pal that I can relate to.

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E-Pal number 2004-058

Name: Nora
Gender: female
Age: 50
Lives in: New York, USA
Years with Sjogren's: 1

About Me: I am a single woman, very young at heart, enjoys being active. A Mom of a wonderful 22 yr old daughter. Up until recently, I had a full time job and went to school 4 nights a week. As much as I want to believe that I am still a young woman, I have begun to feel in a short period of time that I have limitations and that I have to cut back. I am struggling to adapt to the changes that Sjogren's has given to me. My mouth is unbearably dry and so are my eyes. I find myself to be depressed allot lately. I have been single most of my life and finally when I am ready to put myself out there and start looking for a lifetime partner I am struggling with this syndrome and concerned how I would be accepted and loved living with this syndrome. During the night, I wake up to change my chewing gum because I cannot deal with the dryness.

I would like to meet someone that has the same issues as a single woman wanting to meet someone while dealing with this problem.

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E-Pal number 2004-057

Name: Betsy
Gender: female
Age: 53
Lives in: Maryland, USA
Years with Sjogren's: just diagnosec

About Me: My name is Betsy and I am an active happy woman who is grateful that at last I have a reason for all these seemingly unrelated symptoms. Everyone has always said that everything is in my head and at last I can prove that I'm not a hypochondriac. I am an artist who, because of other physical problems, will have to drastically change the things I do. I am looking for friends who can share helpful info and to offer a shoulder to those who need it. I know that my positive outlook on life will help me get through this and am willing to help others deal with it too.

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E-Pal number 2004-055

Name: Linda
Gender: female
Age: 50
Lives in: New York, USA
Years with Sjogren's: recent dx

About Me: Hi Ya!
I am a fun loving happy go lucky individual who is looking for a pen pal to share a few laughs and support in coping with life's challenges we have been given. I try to focus on my blessings in life and take things one day at a time and just keep plugging along as best I can. I hope to make some new and wonderful friends. :)

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E-Pal number 2004-054

Name: Nilsa
Gender: female
Age: 27
Lives in: Texas, USA
Years with Sjogren's: 2+

About Me: I was dx with Sjs about 2 years ago, but I know I've had it longer. Also have RA, fibromyalgia, carpel tunnel in my left hand, and keratitis sicca (eyes). I found all this out the last year of working on my master's degree. It was a blow to me and I still feel I struggle between the depression-acceptance stages. It's the pain that gets to me. I would like to talk to someone who perhaps is feeling the same. I haven't met anyone with else with this syndrome and talking to people who don't have it don't seem to understand.

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E-Pal number 2004-049

Name: Anna
Gender: female
Age: 51
Lives in: Canada
Years with Sjogren's: 0

About Me: I am writing on behalf of my sister Maria who is 57, lives in Slovakia and doesn't speak any English. She has been recently diagnosed with sjs and feels very depressed. Do you know any support group there or anybody who speaks Slovak/Czech. I would be grateful. Anna

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E-Pal number 2004-045

Name: Sheila
Gender: female
Age: 39
Lives in: Texas, USA
Years with Sjogren's: 10

About Me: I am married with one child she is 6 years old. I am a stay at home mom. and I help out at the local elementary school. I was original told I had lupus when I was 25. then after the birth of my daughter I was told that I had Sjogren's. I am looking for someone who understands Sjogren's.

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E-Pal number 2004-044

Name: Sarah    Updated!
Gender: female
Age: 47
Lives in: South Australia
Years with Sjogren's: 12

About Me: Was diagnosed 12 years ago, but know it was there some years before & try to keep positive thoughts & outlook. Hobbies include music, scrapbooking, art, crafts, geneology, my dog, plants and gardens, chess, internet, walking, horses, Avon, shopping, photography. Would like to hear from persons of any age and location who are positive in their outlook in life & who may have similar interests and hobbies. Would like to find out how other SS persons cope & manage their symptoms of Sjogren's Syndrome.

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E-Pal number 2004-042

Name: Linda
Gender: female
Age: 39
Lives in: England
Years with Sjogren's: 4

About Me: Have only just found out that I may have this syndrome, i had suspected for a while. Am happy easy going person, married with 3 cats. I love to laugh, and have fun. Love films, and my passion is the history of Titanic. I like to read, mostly biographies, some fiction. I like gardening, and I love using the internet and emailing my friends and family.

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E-Pal number 2004-041

Name: MJ
Gender: female
Age: 63
Lives in: Florida, USA
Years with Sjogren's: 17

About Me: I know no one with this condition. Even the doctors I have gone to only know about the dry mouth and dry eyes aspect of the disease. Perhaps someone I can speak to who can understand my suffering and maybe give me some ideas. I try to maintain my spirited attitude when with others and love to read, travel which is becoming increasingly difficult. Love watching sports, and need to correspond with some who have learned to overcome this condition. On a medical disability from teaching secondary sciences. Sometimes I get very depressed over it. I am a young 60's lady with a 100 year old body.

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E-Pal number 2004-040

Name: Brenda
Gender: female
Age: 41
Lives in: Ohio, USA
Years with Sjogren's: 1

About Me: I have just been diagnosed with Lupus & Sjogren's although my doctor suspects I have had it for many years. I was hospitalized in August with severe abdominal pain, no cause could be found (appendix, etc.) They finally did some blood work looking for autoimmune disease and it was then discovered. I love reading, walking and puzzles. I would like to discuss symptoms, coping strategies, treatments with someone.

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E-Pal number 2004-036

Name: Terry
Gender: female
Age: 46
Lives in: Scotland
Years with Sjogren's: 15

About Me: I was dx with ss and vasculitis 5 yrs ago, but I have had it maybe 15 yrs. I am married with a son and a daughter 25 and 24 yrs, and I work part time, its about all I can manage, I have joint pain and tiredness and sometimes feels very old, I also have very dry eyes, I have had my tear ducts closed 3 times I won't be getting it done again, its not been very good this time. Would like to hear how others cope with this disease.

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E-Pal number 2004-035

Name: Diane
Gender: female
Age: 53
Lives in: Mississippi, USA
Years with Sjogren's: recently diagnosed

About Me: Greetings! This is all new to me and my doctor is not being very informative about it even though I have trusted him completely until now with my other autoimmune disorders; i.e., fibromyalgia, Hashimoto's thyroid and now SS. First it was my mouth burning and no moisture, now it is my eyes burning and pain so bad I cannot function. Then I have days with both so painful. I have put up with the aches and pains due to the Fibromyalgia, but it is getting worse, so I don't know what is Fibro and what is SS. I have over the last few years turned my life around and now look to God and our relationship to help me through; but each and every day, I feel bad and it becomes quite depressing. Especially living alone. My children are grown and I was so looking forward to these years, but the pain is relentless. I don't know what to take and what will help. So if I could have a pen pal to chat with and to keep each other positive, it would mean a lot. I enjoy some yoga, crafts, beading, painting, reading, home projects, travel and church and/or community activities.

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E-Pal number 2004-032

Name: Michelle
Gender: female
Age: 32
Lives in: Staten Island, NY, USA
Years with Sjogren's: 8

About Me: Hi, I'm 32 yrs old. I was diagnosed 8 years ago. I have very bad fatigue, arthritis, dry eyes and mouth, a bad hip, which is from the prednisone, I had hip surgery. It's a lot better than it was but not 100%, I would say 90% better. I'm married but I have no children. I'm very afraid to because of the Sjogren's. My interests are sewing, computers and reading. I'm looking for an E-Pal with similar interests and someone who won't let this disease take over their life cause I won't.

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E-Pal number 2004-030

Name: Tina
Gender: female
Age: 42
Lives in: UK/NEWCASTLE
Years with Sjogren's: 10

About Me: Newly diagnosed after initial diagnosis of in chronological order: glandular fever, chronic fatigue syndrome, depression (ridiculous if you know me), lupus, polyarthritis, fibromyalgia, at times felt like a hypochondriac!!! I've not been able to work for almost 4 years. Just couldn't cope with the Northern Line anymore, all Londoners know what I mean. Moved to Newcastle, almost 2 years ago. Would love to share information & inspiration & to spread some cheer.

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E-Pal number 2004-029

Name: Cherie
Gender: female
Age: 38
Lives in: USA
Years with Sjogren's: 4+

About Me: I have Sjogren's and Lupus. I have had problems with very dry eyes, however, plugs and Restasis seem to be taking care of that. (for the past 2 years) I have extensive problems due to the Sjogren's-GI troubles that seem endless, cognitive impairment, problems with my nervous system, and my joints to name a few. I have a wonderful team of physicians whom I am truly thankful for. I am beginning to learn what works and what does not for me as far as meds go. I have the most wonderful husband God could have ever given me, 4 children ages 19, 17, 13 and 10, a poodle and 2 cats. I am a kindergarten aide-a job I dearly love. I enjoy exercise, working in my yard when I am feeling well enough, spending time with my kids and other family, camping, and scrap-booking. I am a strong Christian and though sometimes this disease may bring me down, I do to try to find the humor in it.

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E-Pal number 2004-027

Name: Deanna
Gender: female
Age: 43
Lives in: Florida, USA
Years with Sjogren's: 2

About Me: Hello! I am 43 yr old newly diagnosed with Sjogren's. I have been seeking an answer for about 2years and was recently diagnosed, Finally! I suffer from mild dry eyes, very dry mouth and lots of joint pain and fatigue. Despite everything I am trying to keep a positive attitude and learn as much as I can about the disease so I can feel informed and stay on top of myself and the best treatments. I work full time as a office manager for a Psychology Practice. I am married and have a 23 daughter with 2 grandchildren and a nineteen year old son. I love to read, walk, antique and shop!!

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E-Pal number 2004-026

Name: Jan
Gender: female
Age: 60
Lives in:
Years with Sjogren's: 9

About Me: Well, looking for someone else who has dealt with severe pain and who has found a doctor that has helped with that. Gosh, not having much luck! Lots of tests, many doctors, but only a few that have helped with some of the many symptoms of Sjogren's. Some days are great! On others, I would like to run away from" this body". I would like someone to swap ideas with, on what works for them, and would like to share my successes too; maybe we could each help the other to deal more successfully with this "yucky stuff".

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E-Pal number 2004-025

Name: Diane
Gender: female
Age: 46
Lives in: NSW Australia
Years with Sjogren's: 10+

About Me: Hello, I have ra plus ss and recently diagnosed with peripheral neuropathy after many years of symptoms. I am having trouble dealing with the meds I have to take, would love to talk to others who may have tips on coping with all these probs. I live in the country so I do not have much in the way of available health support in these areas. I am married with 2 children, one still at home and 2 spoilt cats. I am a textile artist and love all types of hand work.

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E-Pal number 2004-020

Name: Jennifer
Gender: female
Age: 34
Lives in: Kansas, USA
Years with Sjogren's: 2+

About Me: Hi, I am a married, stay-at-home mom with a toddler and a kindergartener. I have degrees in nursing and psychology, and worked in both fields before deciding to stay home 2 years ago. I was diagnosed with Sjogren's and Hughes Syndrome (antiphospholipid antibodies) when I was pregnant with my last child. I have a long family history of autoimmune diseases. My dry eyes and mouth are mild at this point, but I do have fatigue, joint pain, and peripheral/facial neuropathy that have affected my daily activities. I would like to chat with people who still are raising kids and battling this disease, for ideas on getting through the bad days and mutual moral support.

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E-Pal number 2004-013

Name: Laurie
Gender: female
Age: 47
Lives in: New York, USA
Years with Sjogren's: 20+

About Me: I am a single mother with 2 daughters, 14 13. I work full time, attend college part time and run a small business. I was diagnosed in 1985 with Sjogren's Syndrome but had symptoms for a few years prior. When I was diagnosed there was not allot of knowledge about this disease. I have had primary stage for all these years. I use artificial to alleviate dry eyes and drink allot of water!! I have only experienced a few problems related to Sjogren's over the years. I consider myself fortunate that this has not progressed further. I'd be happy to share my experiences, particularly with someone who has been recently diagnosed. There is allot of frightening information out there, which doesn't necessarily apply to all people with Sjogren's.

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E-Pal number 2004-012

Name: Andrea
Gender: female
Age: 39
Lives in: Tennessee, USA
Years with Sjogren's: 1

About Me: I have been dg with Sjogren's this year, have had undiagnosed with something for 5 years, and have had problems as long as I can remember. I have been married 19 years and have a wonderful 13 year old son, 2 dogs and a cat. I Substitute Teach. I have a strong faith and God, and am very family oriented. My Auto Immune Disorder Is kind of mine non understood section of my life. I need to see talk to someone who understands this thing more than I do, I am on tons of meds for underlying non-dg autoimmune symptoms other then Sjogren's.

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E-Pal number 2004-009

Name: Karen
Gender: female
Age: 50
Lives in: Michigan, USA
Years with Sjogren's: recently diag.

About Me: I am married, have no children, have a schnauzer, that we spoil. I am active, work part time, play golf, and exercise, ride bike, and walk. I have had dry eyes for about 3 years, have been told I have acid reflux. I currently don't have joint pain. I am wondering how long before you notice life changing systems, and what treatment seems to be working for people. I try to keep positive. would like to hear from anyone with suggestions.

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E-Pal number 2004-006

Name: Jen
Gender: female
Age: 21
Lives in: Alberta, Canada
Years with Sjogren's: Recently Diagnosed With Celiac Disease

About Me: Hi! I just recently learned about this web site and come here to chat with others that also have Celiac Disease. I have been married for about 1 and a half years. We have been trying to conceive since we got married and no luck yet. Wondering if anyone else in my boat is having the same trouble. I would like to talk to anyone with Celiac Disease. I look forward to hearing from you!

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E-Pal number 2004-004

Name: MaryLou
Gender: female
Age: 56
Lives in: North Carolina, USA
Years with Sjogren's: 6 months

About Me: Just recently diagnosed...not able to wear contacts anymore..very sensitive to light. Coping with fibromyalgia and related problems. Not willing to let any of this get me down ...I know Christ is my Help. Need to learn how to cope with this new disease in my life. I have lived with fibromyalgia and severe IBS for 20 years so was really amazed at how awful Sjogren's could be!!..my vision and painful eyes, extreme thirst and even more fatigue than I could imagine have come to move in with me. I have a wonderful husband, two labs and a mini-schnauzer, one grandchild and one on the way. My faith in Christ is the reason for the peace in my soul..no matter what's going on in my body or around me that I don't comprehend fully. Sjogren's is another challenge to learn about so that I can live the life that I have been given and cheer others along the way.

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E-Pal number 2004-001

Name: Garet
Gender: female
Age: 39
Lives in: USA
Years with Sjogren's: 10+

About Me: Hi! Looking for other like myself. I have the Sjogren's that affects my whole body. I have allot of friends but not any who really understand what I have. I would love to chat with someone who does. I love movies and crime shows on TV.
I also have 13 pets who help me deal with day to day problems. Hope to hear from you soon, Take Care, Garet