Sjogren's E-Pals

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 2004-198

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 2004-191

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 2004-181

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 2004-179

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, interstitial 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 2004-177

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 2004-175

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 2004-165

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 2004-152

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 2004-147

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 2004-136

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 2004-134

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 2004-130

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 2004-126

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.

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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 2004-122

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 2004-120

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 2004-108

Name: Jan
Gender: female
Age: 53
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.

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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 2004-080

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 2004-077

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 2004-064

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.

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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 2004-042

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 2004-036

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 2004-027

Name: Deanna
Gender: female
Age: 46
Lives in: Florida, USA
Years with Sjogren's: 3 1/2

About Me: I am 46 years old and married with two grown children ages 26 and 23 yr and have 3 beautiful grandchildren. I also have 3 dogs I adore! I work full time as a office manager for a busy Psychology Practice. I am looking for someone to share the ups and downs of this frustrating disease! I suffer from dryness issues, fatigue, and allot of muscle and joint pain and stiffness and weird rashes to name a few things! While I do mourn my "old Self" I try to keep a positive attitude and take things one day at a time. I also try to keep active in my care and am always seeking new information. Would love to hear from anyone who like me just keeps on going..... even though some days it's hard! I enjoy reading, music, animals, walking, shopping, baking and antiques.

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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 2004-009

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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