Sjogren's E-Pals
E-Pal Want Ads 2006
• 2009 • 2008 • 2007 • 2006 • 2005 • 2004 • 2003 • 2002 • 2001 •
(browse all of them in one plain text file)
Don't forget to read the older ads, the more "experienced" E-Pals from previous years.
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 Sjogren's World 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 2006-140
Name: Kristin
Gender: female
Age: 49
Lives in: Idaho, USA
Years with Sjogren's: 1+
About Me: I am a single mom (was married to a doc for 20 years), already diagnosed with MS, Fibro, Ehlers-Danlos, severe Sleep Apnea, heart problems, as well as pulmonary ones, and a host of other joint complaints. I am an avid reader, I write a blog on myspace, and love movies and brain play, but need a "pal" to help me through this latest disease that was added to my collection. I'm scared - I have two kids who rely on me to be my best, and with vision problems, vertigo, pain and fatigue, that's hard - help? I've lived with the symptoms for some time, but was only recently confirmed. I am a need-to-know person who believes in science, not homeopathic medicine (contrary to my ex's wife). For my personality, think Gilmore Girls.
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E-Pal number 2006-134
Name: Kimberly
Gender: female
Age: 26
Lives in: Canada
Years with Sjogren's: 3
About Me: I am a 26 year old woman who is fighting Sjogren's Syndrome, CREST syndrome, Celiac disease, Reflux disease, and Reynaud's phenomena. I was diagnosed a year ago but have been suffering for about 10 years. I am very tired, very frustrated, and confused as to what I have to do in order to have a good life. I am a graphic designer, illustrator and dog lover. I try to make the most out of what I have. I have a serious boyfriend who loves me but we are both struggling with my health and the idea of me being able to have and care for a baby. I have seen so many doctors I cannot even recall how many anymore. The majority of them did not believe me and said that I had a mental problem even though test results were positive. Some days I just want to scream and others just sleep. I am at a loss as to what I should do. People in my life do not understand. They think I look good, therefore, I am good. I am so sick of feeling isolated and alone in dealing with my health. I would love to chat with someone who is just as frustrated as I am. Look forward to hearing from you.
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E-Pal number 2006-133
Name: Michelle
Gender: female
Age: 30
Lives in: Ohio, USA
Years with Sjogren's: possibly 7+, just diagnosed though
About Me: I've always thought of myself as strong, but I'm looking to others who have SS to help me find ways to cope with my ability to do less. I was a runner and athletic person before this, and now I struggle to keep the extra pounds off. I would like to have kids, but I worry about my ability to take care of them. I may also have SLE. I welcome feedback...especially positive, uplifting, but even the tougher things. I like to make jewelry, listen to music, and play with my dog. Looking forward to having an e-pal!
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E-Pal number 2006-132
Name: Lesley
Gender: female
Age: 50
Lives in: Auckland, New Zealand
Years with Sjogren's: 0 under investigation
About Me: Hi I'm a part time primary teacher, divorced and have 2 wonderful daughters 21 and 19. Ten years ago I was diagnosed with cfs which I have have handled well. Now I am being investigated for Sjogrens. Bloods are negative but Schirmer test was low. I have dry mouth and sensitive parotid glands. I love most things but this has thrown me into a bad depression (which is being treated...more dry mouth!!) Would love to correspond with others support and insights into this.
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E-Pal number 2006-127
Name: Ginger
Gender: female
Age: 46
Lives in: Minnesota, USA
Years with Sjogren's: 6
About Me: Learned I had Sjogrens few years back after a car accident. Have been dealing with fatigue, body aches, eyes and mouth, and digestive problems. Love animals, being outside. Try to get thru the days but get depressed with these problems with the body.
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E-Pal number 2006-124
Name: Kerry
Gender: female
Age: 30
Lives in: Canada
Years with Sjogren's: 0, boyfriend has it
About Me: Hi there,
I am a little different as I do not have Sjogrens, but my
boyfriend does. I need to understand his disease a little
better, as I think it would enable me to help him more. We often
have conflict over the fact that he is unable to do a lot of
things. I really love him, but have a hard time understanding
what this disease is really like. I would love to talk to other
people about what it is like, in particular the fatigue, because
this seems to be the biggest problem for him. I also would love
to talk to other people who have loved ones with Sjogrens. I
find it is difficult for me or him to find people to talk to. He
was diagnosed at 15 years old, which I understand is extremely
rare....anyone else? He is 27 now.
Kerry - looking to understand better.
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E-Pal number 2006-123
Name: Cheryl
Gender: female
Age: 50
Lives in:
Years with Sjogren's: 9
About Me: Hi! I was diagnosed with SS in 1997 and have since added autoimmune hepatitis, fibromyalgia, hypothyroidism, lichen planus and degenerative back disease to my illness list. I have good days and bad days and continue to search for therapies (meds, exercise, etc.) to help me have more of the good days. I have found faith, good friends, family and especially good doctors are critical to my success and I would love to hear from others coping with the ever changing symptoms of autoimmune disease. I am 50 and widowed. My daughter and 7 year old grandson live with me. I also left a 25 year human resources career last year because of my illnesses and I'm trying to learn to cope with all of these changes. Would love to hear from others who are "coping" too!
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E-Pal number 2006-115
Name: Gayle
Gender: female
Age: 54
Lives in: Florida, USA
Years with Sjogren's: 4, probably more
About Me: I am 54 years old, happily married with 3 terrific grown kids and 1 beautiful grandson. I try and swim as often as possible or at least float, I sew and love to read. I find my life has changed a great deal in the last few years. I was recently diagnosed with Sjogrens and ra. Actually the rheumy changes his mind about my diagnosis quite often. I am looking for a friend to email who would like to exchange ideas on feeling better, discussing different meds, and how they are coping with their health issues and also ideas on dealing with doctors. I think this epal idea is wonderful. I look forward to meeting and having a new friend with so much in common. Talk to you soon I hope. Gayle
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E-Pal number 2006-111
Name: Alesa
Gender: female
Age: 36
Lives in: Texas, USA
Years with Sjogren's: 1
About Me: I was just diagnosed with SJS although I have had symptoms over the past 8-10 years. I have severe dry mouth and dry eyes....LOTS of dental work and no contacts now. As Mommy to 2 young girls (9 and 2), I am hoping to learn as much as I can about the disease. I'd like an e-mail buddy to swap stories re: symptoms/treatments. I love walking (I'm doing the Breast Cancer 3 Day in October!!), scrapbooking, and my friends and family.
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E-Pal number 2006-110
Name: Joan
Gender: female
Age: 52
Lives in: Alabama, USA
Years with Sjogren's: 13
About Me: Greetings from Mobile, AL! I have mild problems
with dry mouth/dry eyes but have experienced extremely painful
flares of parotid gland swelling which pressed on nerves in my
face - this went on for almost 12 years off and on. When this
happened, I just had to wait it out on pain pills. I was dx with
Sjogren's from a lip biopsy back in my late 30's.
About a year ago, I found a wonderful new rheumatologist (Tom
McGee) that knew alot about SS and he said I needed to be on
Plaquenil and Neurontin, not loritab for pain and steroid shots.
After getting a checkup, I got on both and life has been SO SO
much better. Swelling in my face is all but a distant memory. I
hope I can help someone else by listing myself on this website.
I can listen and be a friend and offer encouragement and hope.
Hobbies: love to read, walk, member of Master Gardeners, play w/
our Westie named Buddy (he's 6). Have been married 33 years to
the same great guy (Kenny). We are both very active in our
church (Christ United Methodist). God bless! Joan
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E-Pal number 2006-108
Name: Faye
Gender: female
Age: 65
Lives in: Louisiana, USA
Years with Sjogren's: 4
About Me: I just turned 65 and was so looking forward to my life as a retired person. I wanted to work until 65 but had to give in at 62 due to my lack of energy to continue and do a good job. I was always very active and enjoyed life to the fullest. Was diagnosed 2 years ago finally. Have been sick for longer. Will talk to anyone who can give me more details.
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E-Pal number 2006-107
Name: Lynne
Gender: female
Age: 58
Lives in: Northern Territory, Australia
Years with Sjogren's: 4
About Me: I am married 2 grown children 6 grandchildren and lots of pets. I was diagnosed with SS around 4yrs ago but a very long history of other illnesses including 40+ operations for diseased sinuses, because of the length of time it took for me to get a correct diagnoses I have also developed a lot of other problems, I would love to hear from another SS sufferer.
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E-Pal number 2006-104
Name: Cathy
Gender: female
Age: 44
Lives in:
Years with Sjogren's: 4 months
About Me: Hi I have been diagnosed recently.
Currently, I am suffering mainly from a dry mouth and sinus.
Just discovered that I have bronchitis and Asthma 2 weeks ago.
Very scared when I look at the terrible developments in the
health of some patients in the internet. Life looks bleak and I
really do not know what the future is in store for me or if I
have the courage to push on.
I hold a Senior Marketing position and I love singing, traveling
and antiques. I am finding a lot of solace in Buddhism.
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E-Pal number 2006-103
Name: Loraine
Gender: female
Age: 52
Lives in: UK
Years with Sjogren's: 5/6
About Me: I am married with no kids but lots of pets. I work in my husbands business so can choose when to work luckily, I would find it impossible to hold down a job. I would be particularly interested in hearing from other ss sufferers who have also had breast cancer, which I had in 1999. I was diagnosed with ss almost by accident in 2005 after numerous tests for persistent abdominal pain (mostly looking for cancer). I have dry eyes and mouth, frequent mouth sores, RA, gastric/bowel problems, chronic heartburn, fatigue, on and off depression. A real barrel of laughs. I feel like screaming sometimes when people say but you look so well! If you don't have ss you can't understand the frustration of feeling grotty most of the time and not being able to make plans just in case its a bad day. I would like contact with others who do know what I am living with for mutual support.
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E-Pal number 2006-099
Name: Bev
Gender: female
Age: 47
Lives in: Temporarily in NSW Australia - return to UK 2007
Years with Sjogren's: 5+
About Me: Currently two years into a 3-4 year
posting in NSW before returning to Cambridge, UK sometime during
2007. Would love to hear from anyone in a bid to keep mutually
cheerful! I have a small network of well meaning friends in
Australia but no one really understands like a fellow sufferer
so I am happy to offer support and compare notes. Diagnosed with
various forms of Lupus since 1988 and SS since 2001 so it has
been a bit of a long struggle (as it would appear to be for most
of us). My husband and I have two young adult children at home
in UK - one at Uni, the other just venturing into London for his
first real job having graduated this summer.
Don't have a great deal of energy for activities since giving up
work in 2003 but I try to keep young at heart and love fashion,
music (the stuff our kids like!), design, photography and have
even attempted a bit of contemporary artwork.
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E-Pal number 2006-098
Name: Maureen
Gender: female
Age: 55
Lives in: South Carolina, USA
Years with Sjogren's: 5
About Me: I was diagnosed with MCTD (Lupus, Sjogren's) about 6 years ago. I have many symptoms of both that "overlap", but the Sjogren's presents as dry eyes, mouth, digestive system...everything!!! mouth sores, enlarged parotid glands and lymph nodes, peripheral neuropathy, fatigue...I take Evoxac for the dry mouth, plaquenil and Mobic. I am an RN working one day a week, married with a combined family of 5 children. 3 grandchildren. I love animals, painting-drawing-writing. would love to hear from someone with similar physical problems to share how you deal with and "conquer!"
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E-Pal number 2006-097
Name: Marcia
Gender: female
Age: 54
Lives in: Florida, USA
Years with Sjogren's: 20
About Me: I would like someone with whom I can trade experiences, helpful tips, and encouragement. I live at a big lake and enjoy boating and traveling. Reading is also a love, but has been more difficult as the dryness progressed. I am a CPCU and former corporate trainer.
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E-Pal number 2006-096
Name: Joyce
Gender: female
Age: 50
Lives in: Florida, USA
Years with Sjogren's: just diagnosed
About Me: I am an educator. I am looking for other
people with this condition to learn how to live as fully a life
as possible.
I am married and have 5 grown children (3 of my own and 2
step-children) 5 grandchildren. I enjoy reading, walking,
swimming, computer stuff and crafts.
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E-Pal number 2006-094
Name: Kathleen
Gender: female
Age: 49
Lives in: Rochester, New York, NY, USA
Years with Sjogren's: Waiting for diagnosis
About Me: Absolutely love to travel, especially to the New England States and outside the country. Love horses and dogs and walks by the lake that I live nearby. Have to wait until November 2006 to get in to see the very popular Rheumatologist where I live. Will be seeing my primary care soon, to enlist some help. Started dry eyes weeks ago and slight dry mouth and dry cough. No fatigue that everyone talks about. Also have some slight female irritation. Would love to hear from anyone who would like to write.
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E-Pal number 2006-092
Name: Valeria
Gender: female
Age: 23
Lives in: Pennsylvania, USA
Years with Sjogren's: 8
About Me: I was only around 16 when I was diagnosed with Sjogren's syndrome. I have a 9 mo. old girl that I can thank god that she is here due to complications with my pregnancy. Just looking to talk with someone who would like to talk and listen to someone else with similarities that don't mind talking about it.
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E-Pal number 2006-091
Name: Deborah
Gender: female
Age: 46
Lives in: California, USA
Years with Sjogren's: 1
About Me: I was finally diagnosed with SjS 1 year ago but had the symptoms for at least 5 years. I have a 7 year old daughter. I enjoy doing crafts, reading- when my eyes let me. Other hobbies were hiking, camping, traveling. I look forward to hearing from people who have this cruel disease.
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E-Pal number 2006-090
Name: Valerie
Gender: female
Age: 47
Lives in: Wisconsin, USA
Years with Sjogren's: 7
About Me: I am a wife and mother of three wonderful daughters, a naturalist and avid outdoorsy person and a volunteer. Recently diagnosed with Sjogrens after years of vague symptoms. I'm looking for comfort and tips on living with these wacky and unpredictable symptoms. My goal is to spend more time doing things I like to do, IE. gardening, exercising, skiing, boating, traveling, reading and less time complaining!
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E-Pal number 2006-089
Name: Christina
Gender: female
Age: 35
Lives in: Greece
Years with Sjogren's: Feb 2006
About Me: I'm a Dutch girl living in Greece. Since Feb this year I have all sorts of problems with my health and my rheumatologist thinks it's ss. Going through many websites, I'm convinced he's right and I also think I've had it for a number of years already without realizing. I'm still puzzled about the whole thing. why, how, what now?!? I take 200mg plaquenil per day at the moment. I'm though not too keen on medication. I hope there are others out there that can help me find alternative ways to improve. I stumbled onto 'body-mirroring' and the meditation helps me a lot. I'm a positive person and like to email with other positive ss-patients. My slogan "life goes on" (okay, I now, it doesn't always feel that way!!!!)
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E-Pal number 2006-087
Name: Jeanine
Gender: female
Age: 57
Lives in: Michigan, USA
Years with Sjogren's: 11
About Me: My doctor diagnosed me with high rheumatoid factor. I got a rheumatologist and said I have mixed connective tissue disease. Then the syndromes came on; severe Reynaud's, then scleroderma and now Sjogrens. I have lost teeth, had work on my eyes. Really hate the dry mouth and would like to talk with each and everyone of the sufferers. I nearly died in December my platelets dropped down to 2000 being we need 150,000 I was lucky I got in when I did. I had a rash and my rheumatologist made me get a blood test. Anyone else have this problem? Write me.
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E-Pal number 2006-086
Name: Lia
Gender: female
Age: 56
Lives in: Maine, USA
Years with Sjogren's: 6
About Me: I wonder if anyone else is experiencing extremely enlarged parotids, and of any positive experiences with Sjogrens clinics. I expect my next step will need to include a specialist, and am uncomfortable pulling a name out of the hat. I am using several alternatives to dry eye, mouth and fatigue with good results, willing to exchange ideas.
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E-Pal number 2006-085
Name: Edith
Gender: female
Age: 69
Lives in: California, USA
Years with Sjogren's: unknown
About Me: My name is Edie. I am an artist and enjoy all kinds of crafts. My life is being limited by this illness, and continues to restrict me more and more as the symptoms worsen. I have never met another person with Sjogrens and feel alone. I am looking for someone who relates to my situation, with whom I can share feelings and not feel so isolated.
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E-Pal number 2006-083
Name: Della
Gender: female
Age: 53
Lives in: Pensacola, Florida, USA
Years with Sjogren's: 3
About Me: I was diagnosed with Sjogren's in 2003. I retired last year. I read allot about Sjogren's and monitor my treatments closely. I have a good Rheumatologist, and a supportive husband. It is tough dealing with the changes in my life since I was always the "I can do it all" type of person. I think it would be nice to talk to someone in the same situation as me. I have Primary Sjogren's and CREST symptoms.
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E-Pal number 2006-082
Name: Sandi
Gender: female
Age: 52
Lives in: Tennessee, USA
Years with Sjogren's: 4
About Me: Presently dealing with Sjogren's, Fibro, Depression (surprise, surprise), and RA. Life is changing daily and very difficult to accept. Looking for someone close to my age who is experiencing this downward spiral. Interested in quilting, cross-stitch, and reading. Have become very limited in doing quilting and cross-stitch which is disappointing also.
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E-Pal number 2006-081
Name: Renae
Gender: female
Age: 33
Lives in: USA
Years with Sjogren's: 1 month+
About Me: Hi I have been newly diagnosed with SS but have had symptoms for about 4 years now. Though I work in the medical field I had never heard of SS. I am still doing a lot of research but would like to hear from people that live with it everyday and not some doctor who is clueless. :) Thanks for the input!
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E-Pal number 2006-079
Name: Shannon
Gender: female
Age: 22
Lives in: Pennsylvania, USA
Years with Sjogren's: 13 months
About Me: Hi, I have a fairly new diagnosis of Sjogren's along with a Mixed Connective Tissue Disease that has not been figured out yet. I have many books on this disease but would like to speak to other sufferer's. I have been to several different Rheumatologists and have recently found one that I am happy with. I've also tried many different medications and have now been on the same one for 2 months with some success. I am currently a Medical Assistant but I am also a Nursing student, which can be very stressful but I've learned to pace myself. I would love to chat with anyone that has some spare time!
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E-Pal number 2006-075
Name: Karen
Gender: female
Age: 47
Lives in: Connecticut, USA
Years with Sjogren's: 7 months
About Me: Hi! I am a Mom of twin boys and an RN.
Just diagnosed with Sjogren's.
Did not even know I was ill at the time. Had a routine Chest
X-ray and found multiple pulmonary nodules. Had an open lung
biopsy done before Christmas, they thought it was lung cancer.
Thank God it was not! It is Sjogren's...primary. I have the dry
eyes and mouth and a positive lip biopsy. Now looking back I
really have not felt like myself for the past 2 years but I am
good at not giving in and noticing things. I have been on
Prednisone for the past 3 months...hate the side effects.
May be going to Imuran or Rotuxin. Not sure yet. Anyone out
there with similar pulmonary problems?
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E-Pal number 2006-074
Name: Sylvia
Gender: female
Age: 57
Lives in: not disclosed
Years with Sjogren's: over 20 years
About Me: I have Rheumatoid Arthritis and have had
it since juvenile about age 11. It has been a struggle I am now
confined to a wheelchair and have tried all kinds of drugs and
medications, later I developed Sjogrens syndrome which no doctor
knew what I had at that time so I suffered for about a year
before it finally had a name. After that I went to all this eye
doctors and they tried all sorts of things but nothing really
helped although one of the things that helped was a vaporizer at
night but I used to cry from all the pain all the time.
Recently I found a nutrition Dr. that has helped me a whole lot
with the pain of arthritis and also with my painful dry eye
problems if interested email me and I'll tell you about it.
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E-Pal number 2006-072
Name: Julie
Gender: female
Age: 43
Lives in: Idaho, USA
Years with Sjogren's: unknown
About Me: I am a student practical nurse. I have had a lip biopsy that was inconclusive. I have dry eyes, dry mouth, dry everything. I have had gallbladder removed, have irritable bowel, neck pain, migraines, edema, palpitations and the list goes on. I am 43. Love gardening, riding the harley with my husband of 23 years, have 2 great kids. I am looking for some support for the feelings and pains. Thanks, Julie in Idaho
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E-Pal number 2006-065
Name: Kris
Gender: female
Age: 39
Lives in: Tennessee, USA
Years with Sjogren's: 5
About Me: I'm a drug and alcohol counselor and have been one since about the time I was diagnosed with sjs. I'm married with no children. We decided not to when I got sick do to all the meds I take. We have 4 wonderful cats. I enjoy reading, sports, spending time with family and friends. I would like an e-pal who is interested in similar interests or who just wants support as I do.
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E-Pal number 2006-063
Name: Brenda "Gail"
Gender: female
Age: 52
Lives in: Nova Scotia, Canada
Years with Sjogren's: not sure
About Me: Hi, I was diagnosed with Sjogren's 2 yrs. ago but fully enjoy life as
it is! Have 6 indoor cats, an aquarium and love nature and all critters. Enjoy reading, quiet times... not much for wild parties. I do enjoy music and dancing though. I'm very kind and considerate of other people and would expect the same. Don't know what to say.. Lacy
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E-Pal number 2006-062
Name: Kira
Gender: female
Age: 25
Lives in: Indiana, USA
Years with Sjogren's: 15
About Me: Hi! I would like an e-pal who is close to my age (20s) and preferably has primary Sjogren's. I was diagnosed with primary Sjogren's 6 years ago but have had symptoms since age 10. My symptoms are fairly mild. Even after 15 years am still learning to live with the disease and accept that I have something wrong with me - I only very recently started seeing an ophthalmologist and a rheumatologist. I would also be happy to correspond with any parents of kids with Sjogren's since I developed it at such a young age.
Thanks!
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E-Pal number 2006-061
Name: Ann
Gender: female
Age: 50
Lives in: Washington, USA
Years with Sjogren's: 2
About Me: Hi to all my fellow SS club members! I am looking forward to hearing from others who are living with Sjogren's Syndrome. I am married and have three kids ages 20, 21, and 24. I love dogs, cats, gardening, travel, and reading. I am an RN, and resigned my job as a nurse educator two years ago. So far Sjogren's has "blessed" me with sicca symptoms, severe fatigue, hypothyroidism, peripheral neuropathy, chronic parotid enlargement, and IBS. I would love to make new friends to understand and share the struggles that Sjogren's disease brings.
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E-Pal number 2006-059
Name: Joan
Gender: female
Age: 66
Lives in: Nova Scotia, Canada
Years with Sjogren's: many
About Me: My Sjogrens has cause peripheral neuropathy to develope and is attacking my muscle causing weakness to develope. I am a retired nurse who was once very active and loved to travel... I am interested in crafts and do crocheting and knitting.. I also have MdDDS for 12 yrs now. I would like to find someone who is living with this condition... the Sjogrens I mean.
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E-Pal number 2006-057
Name: Amy
Gender: female
Age: 43
Lives in: USA
Years with Sjogren's: Still getting a diagnosis
About Me: I have a special needs girl, 9 and a boy, 5. I work part-time and have a spouse that works so much he's barely home. We also have huge marital problems. I have been having symptoms for years and finally an Adrenal crisis early this year which has put me in a tailspin. I would love to talk with someone who understands what it's like to have no support from their spouse as well as someone who can empathize about mourning the loss of our health.
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E-Pal number 2006-056
Name: Moira
Gender: female
Age: 42
Lives in: United Kingdom
Years with Sjogren's: 5
About Me: Hi there, married, 1 child, read a lot, enjoy exercise, work in a primary school, love cats, looking for someone who knows how grotty we feel even though we look fine most of the time.
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E-Pal number 2006-054
Name: Patricia
Gender: female
Age: 47
Lives in: North Dakota, USA
Years with Sjogren's: 16
About Me: I am living with SS and find the progression to be slow but am interested in any ideas of what the future will hold. I was diagnosed in 1990 on Aprils Fool day, thought it was a joke. I went directly to Mayo Clinic to no avail. I have found some wonderful help with keeping eyes moist. Mouth dryness just began. Would like to hear from anyone who has similar circumstances. I have no Arthritis but have leg tingling. I am wondering if I am the only one in my State to be afflicted.
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E-Pal number 2006-051
Name: Uma
Gender: female
Age: 48
Lives in: Texas, USA
Years with Sjogren's: not sure
About Me: I was diagnosed with Sjogren's just a couple of months ago. I started having symptoms of dry eyes occasionally and dry mouth in the morning. My left arm is stiff when I wake up in the morning. My parotid gland also swells up and down over the past 6 months. I also was diagnosed as having Thyroid. I have ANA and SSB positive - I believe I had these blood titers over 10 yrs ago but no diagnosis was made or I just did not give the Dr's a chance. I am ready to face the reality and need to talk to someone who have Sjogrens and what the future entails for me. Thanks for listening. Umat
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E-Pal number 2006-049
Name: Lizzie
Gender: female
Age: 44
Lives in: Sydney, Australia
Years with Sjogren's: 1
About Me: Hi, I've been told I've got SS, yet have no blood markers, pain or fatigue (apart from lack of sleep!). However I do have deteriorating dry eyes, nose and mouth. I am a lawyer with two school age children, and looking to correspond with someone who also has just mainly dryness as a problem and whose focus is keeping a busy career and family life as normal as possible.
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E-Pal number 2006-048
Name: Jackie
Gender: female
Age: 44
Lives in: New Jersey, USA
Years with Sjogren's: 3
About Me: I was diagnosed with Sjogren's about 3 years ago, although this disease is still a mystery to me. There are plenty of days I feel fine, and then days I feel so bad. It's depressing not knowing what the future holds. I'd love to correspond with others who deal with this disease. I'm married with two teenage children and work full time. I also take online classes - working on a degree. I'm looking forward to hearing from others.
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E-Pal number 2006-047
Name: Michelle
Gender: female
Age: 35
Lives in: UK
Years with Sjogren's: ? dx in Feb ‘06
About Me: Hi. Not sure how long I have had sjs but dx in feb, still trying to get my head round it and understand it all, have the dry eyes mouth, swollen glands in neck regularly, anxiety, depression, and pain mainly in right knee and right hand, pins and needles. would really like e-pals to talk to regularly to help each other thought it all. Chell.
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E-Pal number 2006-046
Name: Francine
Gender: female
Age: 44
Lives in: Illinois, USA
Years with Sjogren's: 2
About Me: I am looking for someone to talk through this disease. I have extreme fatigue. the dryness is not so bad - yet. My muscle and joint pain inhibits me from daily activities. This can be very difficult with a family and spouse. I am trying to cope with working (part-time) and daily household activities. People see me as a healthy individual but they don't know the half of it - this is very discouraging at times. I would like to talk to someone who shares my same experiences.
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E-Pal number 2006-045
Name: Jean
Gender: female
Age: 45
Lives in:
Years with Sjogren's: 3 months diagnosed
About Me: I was diagnosed with Sjogrens in January, yet have experienced symptoms for a few years and I had no idea what they were. So far things aren't too bad, just real dry eyes and mouth. Now that I am diagnosed I have a great doctor to help me and there is no more damage at this point. But the whole road ahead is intimidating and the prognosis for the rest of my life. There is a support group where I live, yet due to my schedule and some health issues I haven't been able to attend. It would be nice to have a contact.
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E-Pal number 2006-041
Name: Barbara
Gender: female
Age: 46
Lives in: Illinois, USA
Years with Sjogren's: 11
About Me: I have had Sjogren's for the past 11 years. I would like to email someone who has had fairly successful treatment, I have a great deal of fatigue...it is the prevailing symptom. I am on Plaquenil and have had a partial response. Just would like to communicate with someone else who is going through this and is feeling better.
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E-Pal number 2006-039
Name: Nita
Gender: female
Age: 50
Lives in: Melbourne, Australia
Years with Sjogren's: just diagnosed
About Me: Hi just been dxs with sjs but have been sick for years recently gave up part time job due to fatigue depression etc. This is all new to me and am trying to find out as much as I can am so tired and find it hard to get through a day. I haven't found any meds for my eyes with much relief and mouth as yet. I have twin boys 22 and daughter 28 and a wonderful hard working hubby but would love to correspond with a friend that knows how I'm feeling had lots interests but hard at moment to enjoy anything just trying to survive a day at a time right now love to hear from you. regards, Nita
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E-Pal number 2006-036
Name: Corrie
Gender: female
Age: 35
Lives in: California, USA
Years with Sjogren's: 13
About Me: Hi! I was diagnosed with SS right after the birth of my 14 year old son. I worked full time for a medical corporation until about a year and a half ago when my doctor put me on disability. I am tired all the time and sick a lot. I have been on methotrexate and prednisone but have decided against those for right now (too many side effects). I have never met anyone with SS and would really like to talk to someone. It's so hard for my family to understand. I feel like I am falling apart.
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E-Pal number 2006-033
Name: Rebecca
Gender: female
Age: 36
Lives in: West Midlands United Kingdom
Years with Sjogren's: 6
About Me: I have suffered with fatigue, headaches,
pins and needles with numbness to hands and feet, aching muscles
and joint pains for 6yrs. 2yrs ago I suffered with dry eyes and
now I am finding the dry mouth a real problem. I am undiagnosed
as yet but started on salagen this week from my GP for the dry
mouth. I am now finding out about Sjogrens and it seems to fit
my symptoms.
I am also a registered nurse - it is weird how many of us there
are on this E-pal list. Anyway, I work in theatres but have had
to be on admin duties the past 2 years due to the fatigue. I
would like to hear from others with similar problems for support
and friendship.
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E-Pal number 2006-031
Name: Kathy
Gender: female
Age: 52
Lives in:
Years with Sjogren's: recently diagnosed
About Me: I was just recently diagnosed and would like to talk with someone who understands what this feels like. I am a registered nurse and my hobbies include various arts and crafts, gardening, and working on projects around my house.
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E-Pal number 2006-030
Name: Lisa
Gender: female
Age: 37
Lives in: Georgia, USA
Years with Sjogren's: 8+
About Me: I am a 37 year old female. I was diagnosed with ss approximately 8 years ago. I have a very supportive husband and 3 wonderful boys. I find that they are many days I am unable to hold down my full time job and keep up with 3 boys. Due to my medical condition my physician wants me to cut my work hours back, possibly stop working. I am very depressed, but know that I need to try to keep my condition stable by following the doctors advice. Have high blood pressure, chronic kidney disease, arthritis, chronic fatigue and more problems all due to the Sjogren's. I was just wandering if anyone else was going through this and would like to share information with me. Would like to be able to view others opinions and share my strengths also. Remember though to stay positive and do not give up even though your bad days may out number the good days!
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E-Pal number 2006-029
Name: Gill
Gender: female
Age: 37
Lives in: NSW Australia
Years with Sjogren's: 3
About Me: I have been sick for the past 3 years with joint and muscle pain, fatigue, back pain and what seemed to be permanently swollen glands. I have just been diagnosed with Primary Sjogrens and am due to discuss treatment and management next week with specialist. People find it hard to understand why I'm so tired all the time. I live a relatively normal life and train in self-defense twice a week.
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E-Pal number 2006-027
Name: Trish
Gender: female
Age: 51
Lives in: United Kingdom
Years with Sjogren's: Approx 7
About Me: Happily married, one son, two lovely grandsons aged 3 and 9 months. Used to be an Assistant Company Secretary until April 05. Unable to work due to Sjogrens as the fatigue has been so debilitating. Looking for someone I am able share experiences with, as in the UK support is limited. Sjogrens has dramatically affected the quality of my life and it would be so comforting to have someone who understands.
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E-Pal number 2006-026
Name: Kelly
Gender: female
Age: 42
Lives in: Canada
Years with Sjogren's: at least 5 not official
About Me: I am a single mom of two teenagers. finding the challenges of dealing with SS, working and single parenthood .. a little hard at times.. I love flowers, old houses and second hand stores. I really like to garden( when my body allows me to), write poetry and to find inspiration in the smallest of things. At present trying to figure out what my own limitations are.
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E-Pal number 2006-023
Name: Louise
Gender: female
Age: 51
Lives in: USA
Years with Sjogren's: 1
About Me: I was diagnosed with Lupus and Sjogrens last year (2005). Before that I had thyroid cancer (2004). I had both of my thyroid taken out. I seem to have more problems with the Sjogrens. I have both dry eyes and mouth plus joint pain on my shoulder blade. I also have some dry cough that every time I cough it closes my windpipe and I can't breath for a few seconds this is scary. I went to the doctor ( saw 3 different doctor's and they look at me like I am crazy . I would love to know if anyone out there have this problem.
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E-Pal number 2006-021
Name: Nicki
Gender: female
Age: 31
Lives in: California, USA
Years with Sjogren's: 5+
About Me: Hello, I am mother of three who works full
time and has lupus as a primary disease and Sjogrens as a
secondary but lately I feel as if my Sjogrens has taken over. I
am so tired of being sick. I don't let my diseases take over ( I
don't have time) I am very active, I love to play sports!
I would love to chat with another female who is going through
the same things & can relate so that I don't feel like such a
hypochondriac.
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E-Pal number 2006-020
Name: Teresa
Gender: female
Age: 51
Lives in: B.C. Canada
Years with Sjogren's: 1 month
About Me: I have been diagnosed with SS only one month ago. I am a registered nurse working NICU. There are several aspects of my job that I am having to deal with that effect my eyes like standing under radiant warmers for hours at a time. Its brutal on already super dry eyes. I would really like to hear from someone who might understand the nature of my work and who may have found ways to deal with the challenges this type of work has on SS.
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E-Pal number 2006-018
Name: Nancy
Gender: female
Age: 67
Lives in: Washington, USA
Years with Sjogren's: 6 months
About Me: Not yet diagnosed. Doctors blame lots of causes for my symptoms. Need to chat with others - also need to find a doctor who specializes in Sjogren's or at least is familiar enough to diagnose and treat. Avid reader both print and audio. Love gardening and the web.
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E-Pal number 2006-014
Name: Marie
Gender: female
Age: 58
Lives in: England
Years with Sjogren's: having tests done
About Me: Hi I have a blocked saliva gland but because of having rheumatoid arthritis and being diabetic...I'm being tested for Sjogrens ..trying to get all the info I can...about it .can anyone please help?
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E-Pal number 2006-012
Name: Donna
Gender: female
Age: 65
Lives in: USA
Years with Sjogren's: 3
About Me: I am a 65 year old retired lady living in Utah. I am a military retiree's wife. I have lived all over the US and Europe, Italy and Germany. My passion is gardening and travel. I would like to get to know someone with Sjogrens and trade information on this disease. I believe my grandmother had Sjogren's also.
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E-Pal number 2006-011
Name: Mary
Gender: female
Age: 59
Lives in: Wisconsin, USA
Years with Sjogren's: 5
About Me: Hi, I'm Mary from Wisconsin. I am 59 yrs. old. I have Sjogren's and would like to talk with and share hard times with someone. I am a good listener and will share what I know about this disease.
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E-Pal number 2006-008
Name: Mary
Gender: female
Age: 52
Lives in: Springfield, Oregon, USA
Years with Sjogren's: 4+
About Me: I have had the symptoms of Sjogrens for a number of years but have just been recently diagnosed. My dentist was the one to suggest that I have the blood tests. They came out very positive, so much so that the Rheumatologist didn't even have any question to what it was. I am presently working full time. My family doesn't really understand what it is. They still think it is partially in my head and that if I try hard enough to ignore the symptoms that it will just go away. I am looking for someone to correspond with that understands some of the things that are going on.
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E-Pal number 2006-002
Name: Daniel
Gender: male
Age: 40
Lives in: Oregon, USA
Years with Sjogren's: 5
About Me: Diagnosed end of 2005 with Sjogren's Syndrome after being hospitalized over & over for infected Parotoid glands. From week to week it would travel from left to right side. Severe pain. Also got painful dry eyes. After routine cat scan, Dr found Corneal Lesions. I also have RA and if anyone can relate, I would love to hear it.
E-Pal number 2006-001
Name: Shannon
Gender: female
Age: 34
Lives in: Louisiana, USA
Years with Sjogren's: 2
About Me: I was diagnosed 2 years ago. I am a registered nurse and work in the NICU. I am married with twin 15 year old boys. I am looking to have someone to talk to because I do not know anyone with Sjogren's and I feel like allot of times when I tell others how I feel they think I'm lazy, or acting as a hypochondriac. Some days are great, some days are really bad and it makes me depressed and lonely because I don't want to lay down all day. I want to be able to go do things.
