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Sjogren's Syndrome On-Line Community |
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Sjogren's E-PalsE-Pal Want Ads 2003• 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. ~~~~~E-Pal number 2003-181Name: Diane About Me: I'm a full time education facilitator - finding it increasingly difficult keeping going. Much of my working day involves talking- difficult with dry mouth, constant ulcers, sore, burning tongue. Aching joints - it takes ages to get going in the morning or if I stay in one position for too long. Sleeping through the night is impossible as I ache so badly and have cramp in my legs and feet. I have to get up to use the loo a couple of times a night and constantly visit the loo during the daytime. I have acute pain during cold weather and changes in temperature. I have dizzy spells feeling sick and faint. My blood pressure is low. I'm irritable, depressed and would love to have my energy back. I am very, very, lucky to have a wonderful supportive husband. My hobbies are - Runes, astrology, meditation, visualisation, reading, dogs, travel, board games, computer & am studying for a diploma in Indian Head Massage. Would love to here from like minded people for general support and friendship. ~~~~~E-Pal number 2003-178Name: Linda About Me: Hi my name is Linda I have Raynaud's Syndrome with the on-set of lupus. I now been confirmed to have lupus. I also have sjs probably for years but just diagnosed not too long ago. I am a Christian and have very strong faith. I am now taking plaquenil, and it has been a miracle for me. I have no joint pain now, or very little. I have a wonderful husband who is very concerned about me, but I am very blessed not to have much problems. I have had some problems with my throat, I have tried several times to get a e-pal but have been unlucky. Maybe this time god bless all thanks. ~~~~~E-Pal number 2003-176Name: JOANN About Me: My husband thinks I am lazy, and fake the pain. How do I make him understand my pain, and that it is not in my head, and that I'm not lazy. ~~~~~E-Pal number 2003-172Name: Keli About Me: Looking for someone who also has multiple system involvement. Any solutions to the severe fatigue? I've been on methotrexate, Enbrel, Plaquenil and multiple other medications. Any advice on how to help my spouse deal with this disease? Thanks ~~~~~E-Pal number 2003-163Name: Nena About Me: I'm looking for e-pals in Louisiana. I was thinking about starting a state support group of some type. If not, then just having a penpal in this area would be nice. Someone who understands chronic fatigue. ~~~~~E-Pal number 2003-152Name: Sandra About Me: I'm 44 years old, married with two kids (14). We live on a farm, have 16 horses, 4 pot belly pigs, chickens, ducks and geese too! I live with this horrible syndrome, Sjogren's and I am looking for friends who might like to e-mail or chat with me about it or just everyday things in life too! Don't be shy, send me an e-mail...need to know I'm not a rare bird. Thanks! ~~~~~E-Pal number 2003-146Name: Amanda About Me: Hi, I just came across this site and thought it would be awesome to find someone close to my age that has Sjogren's. I know I have never talked to anyone else with it so it would be interesting to hear about other cases. I suffer from extreme dry mouth and dry eyes also frequent visits to the doctor because I am always sick. It isn't fun because no one really understand how miserable it can be. I would love to talk to someone else going through the same things! ~~~~~E-Pal number 2003-144Name: Diane About Me: I'm a mother of 3 and a grandmother (a very young one) of 1, with another due in April. I've had the dryness since my teens and went undiagnosed for many years. It was quite a battle to finally get diagnosed. I've been on disability for a couple of years now due to the Sjogren's, so I have plenty of time to share. I love pets, movies and books. I have a good ear for listening and can talk about most anything. Would love to share experiences with someone else with this invisible disease. ~~~~~E-Pal number 2003-139Name: Sue About Me: I have recently received a weak diagnosis of Sjogren's disease. I have dual eye plugs and am taking moisture medication and Vioxx. All of my blood work came back negative, my rheumatologists told me the lip biopsy was optional since my severe dry eye problem would be treated the same with or without. He also told me 20% of the people that have Sjogren's, it doesn't show up in the blood. I have all of the symptoms including joint pain, dry eye and mouth etc... I am a married 46 year old with a professional marketing/sales career though right now I am experiencing severe depression over the results of this diagnosis. I would love an e-pal that can offer some experience on dealing with this and having a career and family. ~~~~~E-Pal number 2003-138Name: Donna About Me: I enjoy photography, watching sports, shopping for bargains, hanging out with friends, watching movies, and doing fun stuff with my family. I would love to talk to someone that can relate. I have the dry eyes, mouth, etc. Now my feet are tingling. ~~~~~E-Pal number 2003-137Name: Evelyn About Me: I was diagnosed officially with Sjogren's in 2001, but have certainly had it for much longer. I originally thought dry eyes and mouth were a nuisance and that my fibro issues were more of a problem. Over the years sjogren's has become much more challenging as it incapacitates me more often with joint and nerve related issues. I have tried various treatments and have settled on an antibiotic regimen which has provided a remission of many of my symptoms. I am a group leader with the Sjogren's Foundation and run a local support group. I still enjoy emailing people individually or in a group format. We all need support. Hoping to talk with some of you. Wishing you wellness. Evelyn ~~~~~E-Pal number 2003-131Name: Brian About Me: Just looking for someone my age to chat with. I've had SjS for a while but wasn't diagnosed until about 3 years ago. It can definitely be a bit trying being so young with such a rare disorder, already feeling like an old man 'cause of so many doc. visits. anyone is welcome to email me. ~~~~~E-Pal number 2003-129Name: Cheryl About Me: I'm a teacher and a mother of 3 grown children. I've been married for 31 years. My mother had Sjs also. In addition to Sjs, I have Graves thyroid disease, and I'm in remission for non-Hodgkins lymphoma. I would be happy to hear from other patients with advice or those I might be able to help. ~~~~~E-Pal number 2003-126Name: Ande About Me: I've had sle for 17 years and Sjogren's for about 5 years. My symptoms of the Sjogren's seems to increasingly worse with each year. I am married with three children. I am 40 and feel like 80. I really feel isolated with this, and how it makes me feel. I am new to this state and would like to meet "like" people with similar problems. ~~~~~E-Pal number 2003-125Name: Helen About Me: Have suffered with SS since the birth of my daughter six years ago. I was only diagnosed a year ago when I forced my GP to refer me to Dr Hughes at St Thomas's Hospital in London. My symptoms include fatigue, muscle and joint pain, gastro problems, interstitial cystitis, livedo, Hughes syndrome and hypothyroidism. One of the most debilitating symptoms is that my legs ache constantly and I would be interested to know if anyone else suffers from this. It does not appear to be a common symptom. I had to give up work at the end of July because the stress made the flare ups more frequent and worse. It would be nice to communicate with someone that understands what I have been and am still going through. ~~~~~E-Pal number 2003-119Name: Jean About Me: Recently diagnosed with SS. I also have a rare genetic disease called alpha1 anti-trypsin deficiency which is a liver disease that destroys both the liver and lungs. I have emphysema and never smoked due to the alpha1. My SS symptoms are very dry eyes (am on cyclosporin eye drops - they do help), dry mouth, constant sinus infections/inflammation, numbness of hip, muscle pain in rt. arm, tingling and pain in right lung. Immunologist said this was SS nerve involvement - I also have swollen lymph gland in rt. lung on cat scan which lung dr. is watching but can't explain (unable to biopsy due to location), many pleurisy episodes, swollen lymph glands in groin, under arms, insomnia, etc. I recently had lip biopsy and am positive for auto immune diseases - I already have other auto immune dx of hypo-thyroid, pernicious anemia, allergies, asthma, also reflux, hiatal hernia, just plain sick all my life. I would love to hear from someone with SS with similar problems that I have. Dr. put me on Vioxx and plaquenil which makes my stomach problems WORSE! I would like to know meds of others and what seems to help them feel better if that is possible??? Thanks! Jean from NY ~~~~~E-Pal number 2003-115Name: Roberta About Me: Hi I had been sick for about three years and I am looking for someone to talk to and share experiences. I have never met anyone with Sjogren's and it would be nice to meet someone my age. When I first started getting sick, doctors thought I had lupus, because my great uncle died of lupus years ago. I do have a lupus buddy my age, but I really want a Sjogren's buddy my age. I did post a message before, but I can't seem to find it. ~~~~~E-Pal number 2003-112Name: Beej About Me: I was diagnosed with SS and rheumatoid arthritis 3 years ago. I have had the whole range of symptoms - severe joint pain, fatigue, neuropathy, very dry eyes, difficulty swallowing, and most recently, interstitial cystitis. I am a professional musician, although I am now on disability and can only play occasionally. I am house-bound a lot of the time (although I am attending college) and would like to find someone with whom to chat who understands how life-altering SS can be. ~~~~~E-Pal number 2003-111Name: Julie About Me: After over a year of seeing numerous doctors, I was just diagnosed with primary sjogrens. I have had dry eyes, dry mouth and gastrointestinal involvement as well as interstitial cystitis. I would like to find someone with similar symptoms to chat with for support. ~~~~~E-Pal number 2003-109Name: Gill About Me: We emigrated 18 months ago from the UK and love our
new life. I have had a range of symptoms for years, mainly joint pains, and have
gained a complete new lease of life from a warmer climate! I was diagnosed
almost immediately here in WA after trips over the years to the UK docs for one
thing or another. I am so relieved to find that there is a name to my ails as I
was beginning to feel I was a hypochondriac! I am an RN working in Intensive
Care and am a reluctant visitor of the doc's as I feel that I am being trivial
in comparison to what I nurse. ~~~~~E-Pal number 2003-104Name: Terri About Me: I was diagnosed with SS in March of 2003 but have had symptoms for many yrs. I have a son that is almost 16 and two sisters that are also starting to show signs of arthritis. I just need someone to chat with from time to time. If you live in Oklahoma that would be even better. Thank you. ~~~~~E-Pal number 2003-103Name: Margo About Me: Intelligent, active retiree looking for support
partner (Sjogren's Disease). Having new symptoms and wondering what is and what
is not related to this disease. I look forward to chatting with you. ~~~~~E-Pal number 2003-098Name: Diana About Me: I was diagnosed with Sjogren's three years ago, and Fibromyalgia just recently. I am still trying to learn about this frustrating disease. It is so complicated and the symptoms can get so difficult to deal with. Others don't seem to understand what we are going through because we "look fine". I would like an e-pal to compare notes with. It would be nice to be able to share the ups and downs of this disease with someone who has been there, and I am a good listener. I am married and enjoy reading, gardening, and my dog. ~~~~~E-Pal number 2003-096Name: Bev About Me: Diagnosed in August 2002 with SJS. Since then I have been told that I also have systemic vasculitis with Central Nervous System Involvement. Lupus is strongly suspected. Symptoms are too numerous to list, but range from overwhelming fatigue to burning, fiery, stinging painful neuropathy to MS-Type symptoms. I would like to correspond with someone that is as overwhelmed with all of this as I am. I would like to hear from others on how they are dealing with the life style changes. If you just need someone to talk to, please feel free to ask me to be your E-Pal. I am a good listener and would like to help in anyway that I can. I would welcome anyone with multiple family members that have autoimmune disorders. ~~~~~E-Pal number 2003-095Name: Cynthia About Me: I have recently been diagnosed with Sjogren's but have probably had it a year or longer. It all started with sore, bleeding gums that would not heal. I was diagnosed by an Indiana University Oral Pathologist (Dr. Susan Zunt) to have Cicatricial Pemphigoid. She prescribed brushing and flossing 2X daily and chlorhexadine mouthwash. and drinking over 60 ounces of water daily. On my annual visit to her, she asked me how long I had had swollen parotid glands and I reported about six months. The ANA was negative, but dr. is sure that I have Sjogrens. I have been suffering with an iron deficiency for about a year, dry mouth and some neurological symptoms that are worrying me. I am a trademark paralegal and believe I have contracted SS because of how I react to stress. Am a Catholic, avid quilter, and enjoy reading, my two mini-dachshunds, and making new friendships. Want to correspond with others who can help me develop a positive outlook. ~~~~~E-Pal number 2003-092Name: Melissa About Me: Just looking for someone who might have some insight into what it is that we have to go through on a daily basis because of this disease. There are allot of questions that I know we will never know the answers. But at least we can talk to someone about it. That is what I'm looking for in an E-pal. ~~~~~E-Pal number 2003-088Name: Jim About Me: I'm Jim from Coffs Harbour, Australia. Around 2 years I was diagnosed with Sjogrens Syndrome, due to the dryness of my mouth and the effect it was having on my teeth. I am also an Epileptic and just prior to being diagnosed with SS spent 10 days undergoing constant testing in Sydney by Epilepsy specialists do find out why I was feeling so tired and forgetful. SS was not even mentioned as a cause. After returning I went to see my dentist to fill an appointment I had to postpone due to my tests in Sydney. He couldn't believe how dry my mouth was and the affect it was having on my teeth. He subsequently told me I had SS. It seems that my testing in Sydney was a waste of time. I would love to swap emails with someone who can empathise with a fellow SS sufferer. Not many people know what we're going through, so get in touch whenever you like. Jim. ~~~~~E-Pal number 2003-087Name: Char About Me: I am 55 and retired and was diagnosed with sjs and ostio in my neck in Nov. 2002. I have been going through 3 yrs mis-diagnosed with chronic pain and multiple problems including deafness in one ear. I would like to chat with others who experience life with sjs. My hobbies are genealogy, gravesites, antiquing etc. My outlook on life as a cancer survivor is still positive and my spirit unbroken. ~~~~~E-Pal number 2003-086Name: Donna About Me: Hi - I am 4 months pregnant and receiving so much confusing and contradictory information about Sjogren's and how it will effect my baby's health. Recently, I was tested for anti-RO and Anti LA proteins and both came back positive. I'm concerned for my baby and myself. I would love to hear from anyone who has Sjogren's and has had a baby. Thanks. ~~~~~E-Pal number 2003-079Name: Robyn About Me: I am new to SS although have been diagnosed with a
bone marrow disease (Essential Thromboycthemia) and Discoid Lupus in 1994. ~~~~~E-Pal number 2003-075Name: Veronica About Me: Hi, my name is Veronica, and I am 55 and have had SS
symptoms for ever it seems, although I was not diagnosed until early 70's and
have also been diagnosed with Lupus ('96). I live a full and busy life, and have
always had a very positive attitude, but sometimes feel it would help to talk to
other SS patients, especially when faced with occasional seemingly impossible
problems. Right now my teeth and soft tissue are the big issue! ~~~~~E-Pal number 2003-073Name: Laura About Me: We have no SS support group in our city. It sure would be nice to hear from others who are coping with this. Have never even met another person with Sjogrens during the ten years I've known what was wrong with me. (Keep going by focusing on all that is right though!) Retired last year after 38 yrs of teaching. On good days, am still active...hike, bike, camp, tap dance. Love reading and answering e-mail! ~~~~~E-Pal number 2003-068Name: Elaine About Me: I was diagnosed with 'Sjogrens' over a year ago but
have had
poor health for a good 10 years.
I have very dry eyes, eye pain, itchy eyes, light sensitive,
swollen glands, fatigue, joint pain, eye allergies too and
swollen eye area, endometriosis, interstitial cystitis, swallowing
trouble and breathing trouble. All these symptoms came on after
a period of stress. ~~~~~E-Pal number 2003-066Name: Marsha About Me: I am a 50-year old professional who loves the outdoors, hiking, walking, running, etc. I am also a musician on the side and I love all kinds of music, esp classical. I was a single parent of 2 autistic children for 13 years until I got married in June, 2002. In Dec.,2001, the month after I got engaged, my life was turned around by Sjogrens with neurological involvement. I can no longer run, hike, sing, or work. Although my spirits are high usually, I have lost many things that I love. In addition, my new husband is very stresses and my children do not understand why their mom cannot do what she used to do. I am hoping to find someone to chat with who understands. We can explore together. ~~~~~E-Pal number 2003-064Name: Mary Ann About Me: I was recently diagnosed with Sjogren's. I just
started taking Plaquenil and steroids for the extreme fatigue. It seems like I
have lots of symptoms and would be interested in talking to others about ways to
cope with various symptoms. I also would like to hear how others have dealt with
the emotional aspects of having a chronic disease, especially when you have a
home and family to take care of. ~~~~~E-Pal number 2003-054Name: Kate About Me: Hi I was just diagnosed today (April 16th 2003) & told I have been going for 4yrs undiagnosed - I'm not sure what to make of this diagnosis - I have had a lot of pain for years and am hopeful my rheumatologist and new meds will help- I would like to talk with other who know and/or experience this. Hope to hear from you soon. Kate ~~~~~E-Pal number 2003-040Name: Cathy About Me: I am a grandmother with 6 grandchildren. I work part-time and love to travel, read, and gardening. I have problems with fatigue and trying to balance my activities and grandchildren with getting enough rest. I also have frequent flares with more severe dry eyes and mouth and fatigue during these episodes. I would like to hear from others my age and hear how they manage living with this illness and depression from not being able to do what you used to do. ~~~~~E-Pal number 2003-039Name: Angie About Me: I am 33, soon to be 34 years old. I was diagnosed with Sjogren's in Nov. 2002 and started plaquenil. I have not been able to work since I been very ill with the disease over years ago. The plaquenil has resulted in me having improvement over the last few months. My worst symptom is swallowing difficult and pain. My throat often feels swollen and sore, but is better than it was now that I am on plaquenil and evoxac to stimulate saliva. I am very interested in finding an e-pal with the illness and would enjoy writing to that person. ~~~~~E-Pal number 2003-031Name: Ron About Me: I've been though it all. Many different med's and doctors. Would like to share with others and exchange feelings both good and bad ~~~~~E-Pal number 2003-030Special Request Name: Jen About Me: My mom just found out today that she has Sjogrens. She is scared to find out what it is (she also has rheumatoid arthritis), so she didn't ask for details from the nurse. I want to know what it is if someone could tell me. From what I have read, it isn't life threatening or anything, so that makes me happy. Thank you. ~~~~~E-Pal number 2003-026Name: Janyce About Me: I am a single mom of three, Adam 20, Mark 18 Kim 17. I
have had health problems all my life. Which has impacted the quality of life
with my family. ~~~~~E-Pal number 2003-015Name: Kay About Me: I have just been recently diagnosed with Sjogren's (or
should I say, recently diagnosed myself), with the aid of various websites and
an ophthalmologist who was prepared to listen to me. I am keen to talk with
someone in Australia with this condition. I am at present on holiday in the UK
and getting as much info. as I can. My aim would be to set up a support group in
Australia and to promote awareness for this disease. ~~~~~E-Pal number 2003-013Name: Ron About Me: I like to archery deer hunt, play golf and research on the net, also active in my church. I would like to exchange notes with someone who has peripheral neuropathies with their sjo. ~~~~~E-Pal number 2003-012Name: Julie About Me: I am married with 3 children, 15, 13, 9. For 2 years I was dealing with paralysis from waist down, confusion, memory lapses, joint pain, extreme fatigue. I thought maybe MS. So my search began. Not MS, but fibromyalgia. Now definite Sjogren's and possibly Lupus. I am on disability and have lost my adventurous and extreme love of life. How can one not be depressed? E-pal with anyone interested. ~~~~~E-Pal number 2003-011Name: Helena About Me: I have had health problems for 5 years with neurological problems being the first thing I had (peripheral neuropathy). SS was diagnosed mid 2002 as the explanation for all the problems I have had. The last few months have been very tough with thyroid problems, pancreatic insufficiency and now a severe exacerbation along with a bad respiratory infection that is taking weeks to clear. I am a physician myself (paediatrician) - think that makes it worse rather than better! I have needed allot of treatment with immunosuppresives. I have always been very sporty and am desperately missing my biking and running but am unable to do anything much at all at the moment. I would be keen to link up with anyone else who has allot of systemic problems - and especially anyone with positive ideas about how to cope! ~~~~~E-Pal number 2003-006Name: Kathy About Me: I was diagnosed by a rheumatologist through symptoms and blood tests four years ago, but had most symptoms for several year before that. I deal with the usual dry eyes, mouth, etc., and serious fatigue and insomnia. Haven't had swollen parotids in several years, and severe rash and itching have improved greatly since I began taking plaquenil, and moved to a more humid part of the country. I am a freelance journalist, professional musician, substitute teacher and like horses . Last year I moved back to the rural area of my childhood to raise my six-year-old son and enjoy family life with my husband. Before that, I traveled the country for many years, living a "responsible" bohemian life-style, making my living in the music industry and having many adventures. I would like to correspond with someone of like background, who is also trying to understand the challenges Sjs has brought to their life. It has sure "taken the wind out of my sails," and I struggle daily to recover that upbeat, adventuresome person I was/am! ~~~~~E-Pal number 2003-005Name: Mark About Me: I am married with 3 children, 24, 21,and 15. I am interested in reading, computers, web design and have recently put together my own SJS resource site. I suffer from the classic symptoms of swollen glands, blocked saliva ducts, pain, fatigue, etc. I have had numerous operations to clear my blocked ducts, and have had a gland removed. It is clear to me that I have add SJS for some years but I was only diagnosed a two years ago. I welcome chat with anyone that simply wants to talk. Talking is good, and can help. I am not looking for any virtual relationship, or meeting in person. I am happily married, however I realise that sometimes people with SJS need someone to talk to. I am happy to chat. ~~~~~
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