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Sjogren's Syndrome On-Line Community |
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Sjogren's E-PalsE-Pal Want Ads 2002• 2005 • 2004 • 2003 • 2002 • 2001 • (browse all of them)An E-pal is an Internet Pen Pal. Living with Sjögrens can be very difficult, very lonely. Only those who have Sjögrens 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. "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 Sjögrens are listed as special requests. Please look for "Special Requests" for these categories. * To get an E-Pal you must be listed here with your own E-Pal ad. For more information and to submit your own E-Pal Want Ad, click here. ~~~~~E-Pal number 2002-105Name: Clare About Me: Hi, I was diagnosed with Sjogrens 3 years ago after my left parotid swelled. After I had a biopsy on the lump it seemed to settle down. A week ago (just before Christmas) it swelled up again in a big way. My three girls refer to me as the fat faced mummy. Now I keep running a temperature and feel terrible and I am in constant pain. Is there someone who can make me feel a little less insane? I don't know who to turn to. Is this just another way Sjogrens presents itself? I hope someone can make me feel a little less isolated. ~~~~~E-Pal number 2002-103Name: Cindy About Me: Last April (2001) I was diagnosed with Sjrgren's/Lupus.
My symptoms were/are: extreme pain and numbness on my left side and excruciating
pain behind the left eye. On one website I found they said that one of the
symptoms of Sjogrens is Trigeminal Neuralgia, which is what I have. I take lots
of meds to control the pain, but lately I've had a few twinges on the right..I'm
scared it will go to the right side too! ~~~~~E-Pal number 2002-098Name: Shirley About Me: I am a stay at home grandmother of 3 children and 4 grandkids. Before I became ill a year ago I babysat on a daily basis with some of my grandkids. They brought smiles and laughter into my life. Now I am battling sjogrens' dry eyes, dry mouth, joint pain, fatigue, swelling in fingers and toes, headache and depression at times. Also having urinary difficulties. I miss my old life. I was always busy doing something. Now I have to balance my energy output with
rest (on the bed) everyday. I would like to have someone to talk with and share info about these autoimmune problems. How can we make our lives enjoyable and not worrying all the time what will be the next health problem. I hate taking medicine but am forced to do it. My husband is a pharmacist so I have access to info about any medicine. Its affect on each person is so different that I would like to hear how others are being helped by the medicines or
therapies that are available. ~~~~~E-Pal number 2002-083Name: Suzanne About Me: I am 28 years old and have been dealing with Sjogrens for approximately 7 years. I have RA, vasculitis, raynauds, and a host of other symptoms. I was just married in June and we are looking to start having children. I want to find more information SS, pregnancy, and complications that we need to be aware of. ~~~~~E-Pal number 2002-080Name: Jude ~~~~~E-Pal number 2002-076Name: Cathy About Me: HI, my name is Cathy. I have systemic lupus, raynauds, Sjogrens & neurological prob;s. looking for someone to talk with that understands,,, I like people, chatting , reading , pets... I was a nurse before being ill... thank you,, ~~~~~E-Pal number 2002-074 Name: Ingeborg About Me: Retired from a university. Interest: music, reading/writing, gardening, animals/pets (birds, cats, fish). Was diagnosed with SLE in 1993, but must have lived with it ever since my late twenties. RA, Raynaud's syndrome, SS--all go with the territory, so does chronic thyroiditis. Am interested in someone my age with similar problems. Have recently been suffering from swollen glands (parotid/sub-maxillary salivary glands), along with a slight/but constant rise in temperature. ~~~~~E-Pal number 2002-073 Name: Lisa About Me: I was dx'd with systemic and CNS SS in 2001 but I've had symptoms since I was about 10. I'm all messed up inside and am happy that it doesn't show yet. I would like to chat with anyone who has had hand/wrist, coordination/movement, and or organ involvement. Is anyone out there on Solumedrol, Methotrexate? I am. I started Cytoxan 10 days ago. This whole thing has changes my life completely ; ) ~~~~~E-Pal number 2002-059 Name: Annette About Me: I think back to when I was in my 40's and now know I had symptoms of SJS. I also have Rheumatoid arthritis and stopped weekly injections of Methotrexate 4 months ago. I have been on Plaquenil for 3 months and I don't feel any better. My HMO is not up on SJS! I would like to hear from people in my age group and compare medications and any other good advice. Thanks to a wonderful group of people, I have learned more from all of you than my Rheumy! ~~~~~E-Pal number 2002-055 Name: Colleen About Me: I have several chronic illnesses: Type II Diabetes, neuropathy, glaucoma, lots of arthritis, including left total hip replacement, now I need left knee replacement, Sjogren's and pernicious anemia. However, parts of me are excellent! I would like to hear from someone with some of problems to see how they cope. I work across the street from the Pentagon and injured my left knee during 3 separate evacuations. I have a 26 year old daughter and have been married for 28 years. ~~~~~E-Pal number 2002-054 Name: Tricia About Me: I was diagnosed with Sjogrens 6 months ago but had symptoms for 10 years. I work with data and computers and have 4 boys ages 24, 22,19, and 14. I have had many problems including inflammation of the iris which caused blindness in my right eye for a few months and an upper respiratory infection which lasted for 8 weeks. I am surprised by the severity and duration of these attacks. I wondered if anyone has had similar problems. ~~~~~E-Pal number 2002-051 Name: Synnøve About Me: Fortunately reading is my favorite hobby, even if a I was an active person. After SJS took control of my life there has been a lot of reading. I can endure the pains, but the tiredness is "killing me" and have a very negative influence on my life. Also dx with RA and Raynauds, and more is coming. Laughter has gotten me through a lot of ordeals. I would like to get to know someone around my age, who like me still have a lot of questions unanswered, but is able to remain positive. ~~~~~E-Pal number 2002-047 Name: Helen About Me: I was diagnosed 12months ago, I started taking medication to relieve some of the symptoms but now 12 months down the track the joint pains, fatigue and other symptoms have returned, this time even worse. My rheumy wanted to put me on another drug to help (methotrexate) but I felt that was a bit extreme despite my pain and rheumatoid arthritis which is now significant. So now I have decided it is time to actively research this syndrome and find alternatives. I am only 25 and feel I have lots of life ahead of me yet and want to make the most of it without letting the RA & SjS intrude!!! :) Would love to hear from anyone who could swap tips, ideas and advice. ~~~~~E-Pal number 2002-040 Name: Tainia About Me: Hi, I am newly diagnosed with sjogrens ... still having difficulty spelling it let alone getting my head around it! I would dearly like to speak with someone in the same boat. I have a good sense of humour at present feel very isolated and confused. I have lived in Australia for a year (from England). Seems my whole world is ever changing. I have a son of 13, Flora (a sheep), Tillietat (cat) and Mr Moo (dog)..... and a HUGE painful RASH ...my son calls me rashhhhheeeeeeed!. My interests include meeting people and photography. ~~~~~E-Pal number 2002-035 Name: Cheryl About Me: Hello, I have primary sjogren's syndrome I was diagnosed with it when I was 20 and I'm 32 now. It has progressed to my nervous system and I'm having seizures now so I take anti seizure medication. But enough of that; I am married and have three lovely kids....my hobbies...hmmm ~~~~~Updated!! E-Pal number 2002-020Name: Linda ~~~~~E-Pal number 2002-019Name: Karlen ~~~~~E-Pal number 2002-015Name: Susan ~~~~~More E-Pals: • 2005 • 2004 • 2003 • 2002 • 2001 • (browse all of them)
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