Sjogren's E-Pals
E-Pal Want Ads 2008-2009
• 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.
Please remember proper email etiquette and never include your new e-pal's address if you forward email to others.
"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 2009-105
Name: Kathy
Gender: female
Age: 60
Lives in: New Jersey, USA
Years with: 3
About Me: I haven't been dx'd yet but have had symptoms for the last 3yrs. Dry eye has been confirmed but I can't seem to find an Oral surgeon qualified enough to help me, nor get an appt while I'm having the problems. It's extremely frustrating. I find reading, knitting & quilting small projects comforting and relaxing. Is there an EPal that would share how they were dx'd or how to find doctors knowledgeable about this disease (NJ).
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E-Pal number 2009-104
Name: Eva
Gender: female
Age: 53
Lives in: Washington, USA
Years with: few months
About Me: I'm a single 53 yr old, who has had SS symptoms for a few years now, but just this March, it was made possitive. I'm haven a hard time dealing with the dry mouth and eyes. Tried everything.! The headaches and being tired all the time are almost more then I can stand. Still working but less and less as time goes by. I some days feel so alone. My husband passed away many years ago. I truly need someone to talk with about all thats goin on.
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E-Pal number 2009-103
Name: Stasia
Gender: female
Age: 43
Lives in: Poland
Years with: 14
About Me: Diagnosed a year ago, but have had symptoms much longer. I take Plaquenil, but not noticing any improvement so far. I have dry eyes, gritty eyelids, burning sensation, joint and muscle pain, fatigue and memory losses. I work in a printing company, unfortunately spending much time in front of a computer screen. To improve my memory I attend adult school on weekends, however it is difficult when my eyes get easily tired from reading. In my free time I like hiking mountains, cycling and sightseeing. I love visiting caves, there is plenty of moisture there :-) I would like to make new friends to help each other and share experiences in fighting SS.
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E-Pal number 2009-102
Name: Lorraine
Gender: female
Age: 50
Lives in: Toronto, Canada
Years with: not diagnosed yet
About Me: I was and still am very optimistic, I have had major dryness in my eyes and redness for over a year and a half. Went to a ophthalmologist about 14 months ago and he gave me an antibiotic and said he was not going to do any testing unless I had $200.00 to do them. Hence they were never done. When I turned 50 I went back to my family doctor and he did a physical and at that time my eyes were not so bad until just recently, when it is now at the point where I have one eye opened and one eye shut. I where sunglasses all the time even at night when I drive not good. I do have Arthritis throughout my whole body and a very dry mouth as well. I was and still am the type of person where when something hurt to just get up and keep going. Well what a mistake that was to my health without even realizing it. I just took an advil and then got on with what I was doing. It patched up the pain for the time until the next bought started, does this sound familiar to anyone. I had always tried to be aware of my body/health I just don't know how all of a sudden this crept up to me. My family doctor when he saw me last week was quiet concerned because he thought I had a disease called Iritis, and wanted to get me to an ophthalmologist or an optometrist as soon as possible. I then thought how am I going to do this because I had no money. Well somehow I thought my eyes were more important than money at this point and I took the money, all that I had and ran to the optometrist. When I got there the Doc was amazing and extremely quick with all the testing that he had to do. He told me it was not Iritis but to take the meds and come back in one week. Well yesterday I went twice to see him and he had a strong hunch that Sjogrens is what He strongly feels that I have. I went to work with at least some sort of hint of what it might be. He also is making a appointment with an extremely good ophthalmologist to see. At the end of it all in that one week the Doc did not charge me for a thing after all the testing he did not even a dime. He was just amazing and now from what I have read there is still some testing that I have to go through but why could the very first ophthalmologist not know or even have some sort of clue as to what was going on over a year and a half ago, instead of it progressing to the point of I thought I was going almost blind. There are many mornings that I wake up and can't see out of my eyes for sometimes about an hour or so, then eventually my right eye opens then my left one most of the time does not. I have seen a neurologist too who just basically brushed me off because sometimes I fell that because your a woman they think it is all in your head, well when all the testing is done and this comes back positive I will be going back to see these two doctors and giving them a huge piece of my mind.
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E-Pal number 2009-101
Name: Caroline
Gender: female
Age: 29
Lives in: Georgia, USA
Years with: 6 months
About Me: My autoimmune journey began when I was 6 with JRA and continued with me dx with multiple sclerosis in 07, followed by SS in 09. My MS is (mostly) behaving. The SS is fierce tho! Married almost 5 yrs and in spite of the medical drama, hoping to have kids someday soon. My eyes are the worst. having corneas involved after only 6 mo. Nuts. love to exchange ideas on symptom management and the fears over being an autoimmune mom! Thanks.
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E-Pal number 2009-100
Name: James
Gender: male
Age: 20
Lives in: Texas, USA
Years with: 1 year
About Me: Howdy everyone, my name is James and I was diagnosed with Sjogren's back in 2007. Ironically, I'm an immunology researcher, so if you have questions about Sjogren's or any other autoimmune disease, I can answer them. I've never met any females around my age with Sjogren's, so I guess that's who I'd like to meet.
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E-Pal number 2009-099
Name: Wendy
Gender: female
Age: 32
Lives in: Texas, USA
Years with: 15
About Me: Hello, I was recently diagnosed with Sjogren's. After many years of chronic sinus and ear infection and countless other symptoms I finally got a flare which made my hands and feet tingle and at times numb. It took 4 months of kicking and screaming to get 2 neurologist to keep looking. A positive ANA test lead me to a Rheumatologist who found ss-a and ss-b. I have 2 beautiful boys and just want to talk to someone who understands me.
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E-Pal number 2009-098
Name: Laney
Gender: female
Age: 36
Lives in:
Years with: just diagnosed
About Me: Hi, My name is Laney. I was just diagnosed with Sjogren's after some weird years of strange symptoms. My doctors keep telling me I am a "mystery". Not what I want to hear. I am 36 with 3 beautiful boys. I would love to have another child but now I don't know if it is possible. I am scared of what the future might bring but trying to remain positive since I have no symptoms right now. Would love to chat with someone to make it easier to get through. I am definitely a positive, laid back kind of person.
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E-Pal number 2009-097
Name: Kristi
Gender: female
Age: 35
Lives in: New Jersey, USA
Years with: just diagnosed
About Me: Hi all. I am 35, and pregnant with my first child. I was just diagnosed with SS today. I have had symptoms though from age 14. No one knew what I had. I am still going though testing to find out if it is primary or secondary. I am looking for someone who can enlighten me, commiserate, and joke with. Humor helps healing.
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E-Pal number 2009-096
Name: Melanie
Gender: female
Age: 45
Lives in: Pennsylvania, USA
Years with: 1
About Me: I am 45 years old and up until recently was a very driven person, My blood work came back positive for Secondary Sjorgens (ana-la). My mine complaint was not dry mouth or eyes (but have symptoms) my main thing was debilitating face pain, now my hands, feet, and especially my buttocks hurt, I have seen a rheumatologist and of course no answers and I am having a salivary gland biopsy soon, I will be looking for a new rheumatologist after my definite diagnosis. I am looking for an epal that can get me through this and finding out what to expect.
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E-Pal number 2009-095
Name: Karen
Gender: female
Age: 67
Lives in: Iowa, USA
Years with: dx 1995
About Me: I'd really love to E-Pal with someone about my age and/or in or near Iowa. I'm also dx with Rheumatoid, Mixed Connective Tissue, IBD, vasculitis, pleurisy, poly neuropathy and paresthesia, and on and on...all companions of SjS. I dearly love to garden (now limited) Master Gardener, paint, make cards, crochet, quilt, and enjoy my little dog and all outdoors. I have 3 children, 3 stepchildren, 3 grandchildren. I retired (on disability), have great doctors, but still get frustrated with physician lack of knowledge. I believe I had SjS since about 29 and was diagnosed by my eye-doc who thought I had MS at first. He placed tear duct plugs that really help the dry eyes. I try to keep up with some sort of social life, but fatigue sometimes dictates otherwise. An E-pal would be a great door to the outside world. I have a sunny attitude and am a "grandma who likes to hug" according to my grandkids.
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E-Pal number 2009-094
Name: Ann
Gender: female
Age: 38
Lives in: California, USA
Years with: 9 years
About Me: Let’s share gripesgrumbles n goodstuff! Dxd 2 yrs – have tried dozens of meds n specialists. Have beau of 9 yrs & 3 fur kids, many single pals! Enjoy films: vintage, animated, comedy, foreign, PBS, NPR, books, tea, walks, nature, retro, meditation, higher power, positive thinking. Crafts TBA: photos, film, paint, finger knitting – to learn: sewing machine, beading. Have some pain: Peripheral Neuropathy, sciatica, joints, insomnia, dryness. Lost with SSI, SSDI, Medi-caid, Medi-care, Medi-cal. Cheers!
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E-Pal number 2009-093
Name: Chris
Gender: male
Age: 46
Lives in: Texas, USA
Years with: 7 years
About Me: I am an active mid age man with two wonderful kids
and a caring wife.
I love sports and international affairs. I looking for shared
experience and e-pals are dealing with the dry mouth.
~~~~~
E-Pal number 2009-092
Name: Marie
Gender: female
Age: 78
Lives in: Pennsylvania USA
Years with: 6 years
About Me: I was shocked to see how many young people are affected with this disease. I only found one ad from a person my age. I was dx in 2003, mainly complaining of severe dry mouth and eyes. It has progressed to joint and muscle pain, vasculitis, and at times, extreme fatigue. I can sleep for hours, at night or during the day. Would like to compare life style and symptoms with someone close in age.
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E-Pal number 2009-091
Name: Valerie
Gender: female
Age: 35
Lives in: New Jersey, USA
Years with: 1 year
About Me: I am a 35 year old mother of 2 girls.. I am finding
that this whole autoimmune nightmare is like putting a big
puzzle together.. I just want to know what to expect.. I am very
scared of the unknown? The only symptoms I have now are dry eyes
and joint pains in my hands & feet.. I am currently just taking
advil for the pain. I feel very alone My family is not
supportive at all.. They think I look great so there is nothing
wrong with me. Need advice??
Thanks, Val
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E-Pal number 2009-090
Name: Amy
Gender: female
Age: 32
Lives in: Texas, USA
Years with: 7 years
About Me: I have secondary ss. Not sure what my primary is, although when initially diagnosed, dr said I had several of the characteristics of lupus and that he didn't want to quite dx me with that at such a young age. I suffer with dry eyes and arthritis. I have a 19 month daughter and struggle frequently with the joint pain and fatigue.
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E-Pal number 2009-089
Name: Nichole
Gender: female
Age: 32
Lives in: Massachusetts, USA
Years with: 15 years
About Me: I was diagnosed about a year ago after a very bad flare, when I just couldn't ignore my symptoms anymore and had to find out what was happening to my body. Since then I've been trying to be proactive by living healthier and taking better care of myself. I just started acupuncture and am having good results. I try to stay positive and not think to far ahead. I am single with no children. I don't know anyone who has SS and would like someone to relate to and share with.
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E-Pal number 2009-088
Name: Kerri
Gender: female
Age: 36
Lives in: California, USA
Years with: 7 years
About Me: I was recently diagnosed with SS after 2 years of
chronic pericarditis, dry eyes, and dry lips. I have been
getting drier as time has passed. I am lucky to have a
supportive husband, but I don't know anyone with Sjogrens or any
other autoimmune disease. I enjoy hiking and camping, but lately
I have been struggling with bouts of fatigue. I would like
someone to talk with about the various symptoms of Sjogrens.
~~~~~
E-Pal number 2009-086
Name: Jayme
Gender: female
Age: 35
Lives in: PA, USA
Years with: 1 year
About Me: I have been diagnosed with Sjogren's among other
things. I am a mom who has recently received disability benefits
and I feel totally alone with this illness. I don't think anyone
quite understands what I have been going through for the past 4
years. I would love someone to talk to when there is no one else
that understands.
~~~~~
E-Pal number 2009-085
Name: Rita
Gender: female
Age: 52
Lives in: New York, USA
Years with: 1 year
About Me: Hello, I have newly been diagnosed with Sjogren's
Syndrome. I am a Speech-Language Pathologist and the only
contact I have had with this condition is a patient I have had
that was in the late stages of the disease. She had a lot of
problems with swallowing. This scared me a little when I found
out that I had the same disorder.I would like to connect with
people who also have this and may want to talk abnout it.
~~~~~
E-Pal number 2009-084
Name: Karyn
Gender: female
Age: 56
Lives in: Pennsylvania, USA
Years with: recently diagnosed
About Me: I just found out last week that I have SS. I never
heard of it before. I've had the dry eyes and the eye doctor had
me using the drops for about 5 years now. A family doctor ran
the big blood tests for all things and the SS came up then. I'm
reading all I can about it now. Besides the dry eyes, okay I
have the achy joints (brushing it off on getting older) a cough
(dry house?) but nothing else. Now I'm wondering how to keep it
all from progressing? I watch my diet and drink a lot of water
anyway so I'm told that's good. And other tips would be so
greatly appreciated at this point. Thanks!!
~~~~~
E-Pal number 2009-083
Name: Annette
Gender: female
Age: 55
Lives in: Kentucky, USA
Years with: recently diagnosed
About Me: Am newly diagnosed with Sjogren's and Fibromyalgia.
Also have to deal with 24 year history of RSD (I have chronic
nerve pain). I am a medically retired RN with experience in
critical care and infection control. I enjoy folk art painting
(not that I'm very good!), yard sales, antique-ing, and spending
time with family, especially grandsons ages 7&8. Of necessity,
live quiet lifestyle.
~~~~~
E-Pal number 2009-082
Name: Pat
Gender: female
Age: 65
Lives in: MO, USA
Years with: 45 years
About Me: I like to read and have two cats that rule the
house. I love all kinds of music. Love flowers. Love water color
paintings. Wish I could exercise more.ss flares cause me to miss
a lot but I try to stay positive I have a good sense of humor.
~~~~~
E-Pal number 2009-081
Name: Jill
Gender: female
Age: 38
Lives in: Indiana, USA
Years with: recently diagnosed
About Me: I was diagnosed with a debilitating stroke in June 2004. I have recovered to about 95% but the evidence of stroke in my brain was not there. After years of pain and discomfort, I finally found a neurologist who did some tests. I am now working with several doctors. Because of my age MS has been brought up since 04. Now, I learn that it is Sjogren's. I do not have the dryness yet but the pain in the joints and jaw are definitely there. I am looking for someone to begin my journey with me, who I can be here for and can talk to. I am a single mom and really need someone adult to share with. I am a great listener and would love to know that I am not alone in this.
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E-Pal number 2009-080
Special Request
Name: Jonnell (for my daughter Jenna)
Gender: female
Age: 4 years old
Lives in: New Jersey, USA
Years with: 1 year
About Me: My Name is Jonnell. I am a parent of a 4 year old
little girl with Sjogren's named Jenna. I am looking for parents
with a child with sjs or a autoimmune disease. It is very hard
to find information about children and this disease. I have 3
children daughter 16 son 14 and Jenna. My fiancé Rick is a
wonderful supportive man who has helped me reach out to talk to
others about this disease. I enjoy helping other people, my
children and learning all I can to help Jenna deal with her
illness
~~~~~
E-Pal number 2009-079
Name: Dee
Gender: female
Age: 54
Lives in: Texas, USA
Years with: 1 year
About Me: I have been DX with Primary Sjogren's, Lupus,
Fibromyalgia. It has been a year since I was first DX. I suffer
with joint, muscle pain, numbing, tingling, GERD, scarring of
lungs, liver and now stomach also extreme fatigue. I have
multiple doctors, each taking care of different systems. I have
not gotten any better in a year in spite of all the medications.
I became unable to work this year and was approved for SSDI in 2
months. I have learned a lot about this disease this year and
would be willing to e-pal with anyone who would like to. I have
gone through many emotions since I learned of this DX, but now I
am better emotionally and want to help others with this disease.
~~~~~
E-Pal number 2009-078
Name: Monica
Gender: female
Age: 43
Lives in: Hawaii, USA
Years with: 5 years
About Me: Aloha,
I am Monica from The Big Island of Hawaii. I have had SS for 5
years now. I am looking for a sincere, outgoing, caring, genuine
friend. Must be a good listener. Someone we can support one
another through bad times and good times. Share our joys, fears
and tears. Count on one another no matter what. Looking VERY
forward to finding such a person to share my life's struggles
with.
Sincerely, Monica
~~~~~
E-Pal number 2009-076
Name: Vicki
Gender: female
Age: 54
Lives in: GA, USA
Years with: 9 years
About Me: Diagnosed but with no ANA stuff on it in my blood
work in 2007 - - but it explains a lot of things going on back
to before 2000 (years of IBS- now manageable with diet,
merciless chronic pain in cervical lumbar and sometimes thoracic
spine, premature facial skin aging, acute hypothyroidism, post
menopausal hormone deficits, fibromyalgia, insomnia for one
reason or another since early 2000s...).
I 'manage' life with a daily toolkit involving hard learned
lessons in nutrition and food sensitivities, HRT, acute
awareness of internal and external stress triggers (stress is
lethal), weekly acupuncture, modified regular 'doable' exercise,
meds, and focusing on remaining joys in my life. I was laid off
work last Fall when my health problems had caused me to be only
able to work 4 hrs a day. I am fighting for disability insurance
and living day to day. Atlanta has a wonderful monthly SS
support group which has been an invaluable educational tool...SS
patients know far more than most rheumatologists and other
specialists about SS and coping with it. I still deal daily with
neck back and upper limb pain, fatigue and worsening dry eye and
light sensitivity. My hard work has provided me a great med team
with rheumatologist, ophthalmologist, holistic specialist,
endocrinologist, therapist, dentist (it seems to take a
village...it's a full time job dealing with auto immune body).
Look forward to meeting others who know what life is life like
this...it hurts, is exhausting and lonely. Maybe good company
will lighten the load. :)
~~~~~
E-Pal number 2009-075
Name: Lisa
Gender: female
Age: 47
Lives in: South Dakota, USA
Years with: Recently Diagnosed
About Me: I was just recently diagnosed with SS. Still trying to understand everything. I am scared with the future will bring. I have joint and muscle pain. My eyes and mouth aren't effected yet. I have been married thirty years, have two grown sons and a new beautiful baby granddaughter. I'm looking for someone to talk to, maybe in South Dakota, but not necessary. Just so we don't feel so alone in this.
~~~~~
E-Pal number 2009-074
Name: Nathan
Gender: male
Age: 23
Lives in: Arizona, USA
Years with: 1 1/2 years
About Me: I'm a younger guy who's interested in networking
with others around the same age. I am a bit of a nerd, and enjoy
reading about immunology, rheumatology and microbiology.
I am still studying at college to become a Medical Lab Tech.
Hobbies I enjoy talking about include gaming, anime, movies, the
active life (as much as I have, ha!).
~~~~~
E-Pal number 2009-073
Name: Shirley
Gender: female
Age: 51
Lives in: Ohio, USA
Years with: many
About Me: I was diagnosed about age 25 with hasimoto thyroiditis and Sjogren's. Ten years ago I was diagnosed with celiac, rheumatoid arthritis and fibromyalgia. After severe muscle weakness, fatigue, breathing and swallowing difficulties hit me in April of 2009, I was also diagnosed with mixed connective tissue disease and polymyositis. I have pretty much lived in denial most of my life but I can no longer do that. I would like to hear from anyone that would like to correspond with me and offer some positive support. I am married 32 yrs, have two adult children and two precious grandbabies. I love to quilt and paint when I have the strength and energy. Hope to hear from any and all soon.
~~~~~
E-Pal number 2009-072
Name: Tamie
Gender: female
Age: 50
Lives in: NC, USA
Years with: 5 Months
About Me: Recently diagnosed, Interest are our 4 grandkids,
Sammy our dog, reading. I work in the school system as a Speech
Language Pathology Assistant. would love to e-mail someone about
this baffling illness.
~~~~~
E-Pal number 2009-071
Name: Amanda
Gender: female
Age: 33
Lives in: Maryland, USA
Years with: 2 Months
About Me: I was recently diagnosed with Sjogren's Syndrome.
I am looking for someone that I can communicate with and work
through this disease with. I enjoy reading and spending time
with my 4 year old daughter.
~~~~~
E-Pal number 2009-070
Name: Dennis
Gender: male
Age: 40
Lives in: Idaho, USA
Years with:
About Me: One of the few guys here, looks like. I have not been diagnosed with this condition (have a doctor appointment soon), but I am showing the signs; crazy dryness in mouth and eyes, fatigue, constantly feeling like I am coming down with the flu, etc... These specific symptoms have just hit me like a truck in the last week or two. Very worried about how this will affect my life (raising two young boys, working, outdoor activities like whitewater rafting, etc...).
~~~~~
E-Pal number 2009-069
Name: Marie
Gender: female
Age: 63
Lives in: New Jersey, USA
Years with: 13 years
About Me: Grandmother of 3 beautiful grandchildren. Love
outdoors, gardening, walking. Anyone have sweet tooth as I,
believing it comes from Sjogrens. Can't eat spicy - burns tongue
& mouth. Sweets taste better / no burn. Eyes scale of 1-10
measured the worst per test Dr. did when 1st diagnosed, bad, but
can be remedied with eye drops. My mouth bothers me more than my
eyes. Any advice?
~~~~~
E-Pal number 2009-068
Name: Rachel
Gender: female
Age: 26
Lives in: Florida, USA
Years with: 1 year
About Me: I have just been officially diagnosed with SS and I
am looking for all the help, support and information I can get.
My older sister has lupus and doctors thought maybe that was
what I had. Having a sister with an auto immune disease is
helpful and she has been my saving grace. Although this is a
scary time for me, I know that God is in control and I have
nothing to fear.
~~~~~
E-Pal number 2009-067
Name: Gloria
Gender: female
Age: 48
Lives in: Texas, USA
Years with: 3 years
About Me: In 06 shortly after moving to Texas I was diagnosed with Sjogren's but did not experience problems, so I thought. But seemingly the problems that sent me to the Rheumatologist were some of the symptoms, joint pain and now dry eyes and dry mouth. I know God is a healer and I will seek this daily. I want to be of help to someone else who understands what I am going through.
~~~~~
E-Pal number 2009-066
Name: Mary
Gender: female
Age: 33
Lives in: Pennsylvania, USA
Years with: 2 years
About Me: Had some form of arthritis since teen years, now
diagnosed with Sjogren's and also "light" form of
fibromyalgia.
Rheumatologist was no help-said that I am too young to need
medication. Not very active right now...Would like to talk to
someone my age who has it, or someone who knows about pregnancy
and Sjogren's. Also, what can I do to cope with pain that is
inexpensive? Have no insurance and getting worse every day. Have
extreme fatigue, joint pain, and just plain would like to talk
to someone!
~~~~~
E-Pal number 2009-065
Name: Nikole
Gender: female
Age: 23
Lives in: Pennsylvania, USA
Years with: 1 1/2 years
About Me: Am I the youngest person on this site w/ ss? My grandmother was diagnosed a few years ago. And she noticed that symptoms I was experiencing was eerily similar to her. My mother does not have it. so maybe it skips generations. I guess the worst part being diagnosed I was a month pregnant with my first child. What really scares me is my memory loss is so bad that parts of my child's first yr. is missing. they found white spots on my MRI brain scan. Now their worried if ss is affecting my spinal chord or CNS. anybody having these type of problems?
~~~~~
E-Pal number 2009-064
Name: Lauren
Gender: female
Age: 40
Lives in: Illinois, USA
Years with: 2 months
About Me: I was recently diagnosed and am thinking about what lies ahead in my future. I'm incredibly active and I LOVE to exercise--biking, golfing, weight training, cardio. I have 4 dogs and love life. This diagnosis has been a blow to me. I don't have bad dryness yet, but my joints were what sent me to the doctor initially. With my "very positive" SS-A result, I know tests and changes are coming my way. Each day is a new set of symptoms. Tomorrow is the first rheumatologist appointment. Looking to talk with experienced people who have been through what I am going through.
~~~~~
E-Pal number 2009-063
Name: Chris
Gender: male
Age: 42
Lives in: PA., USA
Years with: 1 year
About Me: It looks like I am the only Male on this Website? :) I got a diagnosis about 1 year ago. I went to the Mayo Clinc and they said that I do not have Sjogrens. However, everything I read about symptoms it sure seems like I do. I am not sure. Looking for friends to comunicate with and disguss how they live with it, the drugs they take etc. I was once on an olympic team and over night I am living a nightmare.
~~~~~
E-Pal number 2009-062
Name: Heather
Gender: female
Age: 36
Lives in: Texas, USA
Years with: 4 months
About Me: The SS diagnosis came as a surprise, although it explains symptoms I've had for a long time - dry eyes & more recently dry mouth. I am SSA +. I'd like a positive pal who is interested in natural therapies and maybe has something in common with me. I don't take any meds yet and I'm not sure if I want to start just yet. I love photography, hiking, music, and reading (Lois Lowry, J.K. Rowling, Jeanne Duprau). I have a supportive husband and the greatest 2-yr-old little boy.
~~~~~
E-Pal number 2009-061
Name: Amy
Gender: female
Age: 35
Lives in: Pennsylvania, USA
Years with: 2 months
About Me: I am a 35 year old single female that was just diagnosed with Sjogrens this past February. I had been feeling the symptoms for about 3 years but had not gone to the doctor until September to start testing. I am basically looking for someone of any age that is going through the same things that I am. Family and friends try to help but don't really understand how I feel. I'm just looking for someone who can say..."I know how you feel" so that I know I'm not going crazy. :)
~~~~~
E-Pal number 2009-060
Name: Debbie
Gender: female
Age: 52
Lives in: California, USA
Years with: 4 years
About Me: I was diagnosed with Lupus in 2005, and along with
that came the Sjogren's. It has gotten worse over the years. My
eyes are always red and burning, my teeth are rotting, I can't
swallow and I'm losing my voice!!!
~~~~~
E-Pal number 2009-059
Name: Betty
Gender: female
Age: 52
Lives in: Iowa, USA
Years with: Diagnosed 4/2009
About Me: Long time to get SJS diagnosis and have both types
A&B. So far only minor symptoms. I also have an underactive
thyroid and Reynards in 2 fingers. I was the caretaker to my
elderly parents for many years who have since passed.
Personality: Midwest friendly & generally an upbeat person. I
use a lot of "old phrases" that get a chuckle. Volunteer for a
group that helps the elderly keep their companion pet. I have
cats of my own - 2 are rescues. Am 5ft-110lbs.
Interests: Ancient history, genealogy, auctions and reading.
For an E-Pal: Everyone is unique and interesting. I'd like to
learn more about SJS and swap stories with others of life's
funnies. Easier to get through things with a smile on your face
- if anything folks will wonder what you are up to.
~~~~~
E-Pal number 2009-058
Name: Shonda
Gender: female
Age: 41
Lives in: Florida, USA
Years with: 2 days
About Me: I am a native Floridian. I have been sick for 2
years with newly acquired allergies and constant sinus
infections. I was worn out, missing days at work, on antibiotics
continuously, memory fog is getting worse, and just trying to
get someone to listen to me. I thought I was crazy. Finally,
went to a RA doctor. She sent me to ENT for lip biopsy...it came
back positive for SS. Now I know why I have dry mouth, nose,
skin, and other areas. What can I expect in the future?
~~~~~
E-Pal number 2009-057
Name: Chiara
Gender: female
Age: 27
Lives in: USA
Years with: possible diagnosis
About Me: I am awaiting extensive testing w/ rheumatology
clinic to finally find out what has been going on w/ me for the
last few months.
I have experienced fatigue, bladder pain, burning, urgency,
heart palpitations and trouble breathing at times.
I have had asthma for years, but that was my only medical
problem that was long-lasting.
I was married in January of this year and had plans to start a
family this fall after hubby and I got some things situated on
the homefront and at the workplace.
I just received a blood test result of positive ssb antibodies,
indicative to my doctor that I have been suffering from
Sjogren's.
I am absolutely devastated at the fact that I may now consider
not having children literally two months after my wedding.
I am having a hard time finding what the actual risks are to an
unborn child and if this is something I should even still be
considering.
I think my new husband is growing tired of always hearing about
doctors appointments and medical problems.
I am looking for someone to give me insight who is perhaps my
age and maybe thinking about attempting to have children w/ this
disease or who has been pregnant now.
~~~~~
E-Pal number 2009-056
Name: Monica
Gender: female
Age: 44
Lives in: Iowa, United States
Years with: recently diagnosed
About Me: I was recently diagnosed with SS. I have had symptoms
for years but felt like a hypochondriac. Now, at least, I feel
peace with the diagnosis and happy to know I am not crazy! I am
still waiting on other test results.
I have 5 sons and one daughter-in-law. I've been married for 23
years and have a very supportive husband who is full-time
military. I love being active and have biked for years but am
finding the fatigue tends to steal my active time now. I love my
Bichon Frise dogs and I am an artist in various mediums. I have
taught nutrition for the past few years and am very interested
in health and diet to help treat this disease.
~~~~~
E-Pal number 2009-055
Name: Ana
Gender: female
Age: 38
Lives in: Arizona, USA
Years with: 1 year
About Me: Hello Fellow Sjogren's Sufferers. I am a recently
diagnosed 38 year-old mother of a beautiful 3 year old daughter.
I work part time as a Speech Pathologist and a Ph.D. student. I
am unfortunately in the middle of a nasty divorce and custody
battle. I got the diagnosis the same week that I left my
husband. He wasn't very sympathetic to my symptoms and
frequently chastised me for being so exhausted so hurray for
those of you with supportive spouses/significant others. I
suffer from eye dryness, muscle weakness, body aches, serious
fatigue, etc. I got a clue that something was really not right
when my eyelid stuck to my eyeball and ripped off some
epithelial cells causing a corneal abrasion - OUCH! I take
planquenil and other supplements such as fish oil. Am trying to
go organic but what a grind. Would like to be in touch with
others who understand what it's like!!
~~~~~
E-Pal number 2009-054
Name: Jessica
Gender: female
Age: 64
Lives in: USA
Years with: 2 years
About Me: Hi Everyone! I am so glad to have found this site!
With each operation and new diagnosis, I have tried to be
completely optimistic and want to gain some control over all of
this. I have been researching nutrition, joined the wellness
center, using the heated pool for exercises, and read uplifting
books. It would be really nice to communicate with someone that
knows all about this and share what works and doesn't work. I am
really starting to feel that unless you have these things going
on in your life, you truly don't understand. I have been
diagnosed with Sjogren's for two years now, however; I believe I
have had it since my twenties. In 1998, I started having severe
pain in my back which turned out to be different types of
arthritis and finally had a fusion in my lumbar spine (L-3/4 to
S-1) and in cervical (C-2 to T-1) both with instrumentation..
nuts & bolts). I have since been diagnosed with RA and Lupus.
Each month (or day) it seemed like a new pain, symptom or
weakness. I did not want to sound like I was a hypochondriac so
I didn't mention all the symptoms I was having relating to
Sjogren's to my doctors. I now have a positive test for it as
well.
~~~~~
E-Pal number 2009-053
Name: Teresa
Gender: female
Age: 42
Lives in: Ireland
Years with: 3 years
About Me: I live with my boyfriend of 6 years. have two teenage step daughters who live with their mom in England. have no more contact with their dad who i was married to, have pain behind my eye which is sensitive to light so i wear glasses winter and summer i have to wear peak hats. i have found that soaking my feet in mustard powder (one spoon in hot water) helps with my sinus problem.
~~~~~
E-Pal number 2009-052
Name: Susan
Gender: female
Age: 49
Lives in: Florida, USA
Years with: just diagnosed
About Me: I just was diagnosed with Sjogren's syndrome last
week. I am looking for someone to chat with that can tell me
what I can expect with this disease. I have done extensive work
with the Arthritis Foundation in the Chicago, IL area leading
Fibromyalgia support groups. I enjoy cooking and baking, and
love kids and dogs. I have 2 grown sons and I am divorced. I do
counseling with adolescents in substance abuse treatment for my
primary job.
I look forward to chatting with anyone.
~~~~~
E-Pal number 2009-051
Name: Angie
Gender: female
Age: 48
Lives in: Texas, USA
Years with: 1 year
About Me: I have been married almost 21 yrs and my children all grown up and married themselves, I have been sick my entire childhood, I was diagnosed with Sjogren's with rheumatoid factor since 2008, but I'm sure I've had it for quiet some time, due to everything going on in my body, it takes yrs to diagnose Sjogren's, I am also a diabetic with hypothyroid. I was told that dry eyes and dry mouth was noticeable but a lot more is effected, it's the entire body, I suffer a lot more then dry mouth and dry eyes, I was told that diabetes and hypothyroid is also an auto immune disease except they are common the others are rare. I could go on and on, there is just to much to post here, looking for others that suffer alone as I do
~~~~~
E-Pal number 2009-050
Name: MARY
Gender: female
Age: 54
Lives in: Scotland
Years with: not yet diagnosed
About Me: Hi there, I am a 54 year old woman living in Scotland. I am married with a 13 year old son, and I am also a Foster Carer. I enjoy exercise, bike rides and swimming. I take care of Cats for the Cat Protection League. Almost at a diagnosis after not feeling well for a good while. Just looking for someone similar to chat with. Thank you.
~~~~~
E-Pal number 2009-049
Name: Heidi
Gender: female
Age: 49
Lives in: Oregon, USA
Years with: 12 years
About Me: Symptoms for 12 yrs, but recently diagnosed. I am a mother of 4, very active physically. Always attempting to improve in my life long passion....ice dancing and now understand why all the pain and lack of stamina. Tried Plaquenil for 2 months, but the hair loss and other side effects out weighed the benefits. Now, dry eyes and sinus pressure is a more recent symptom added to the rest. UGH! I would just like to chat with someone who has found some answers. My approach will be boosting my immune system naturally with diet and supplements. Heidi
~~~~~
E-Pal number 2009-048
Name: Dawn
Gender: female
Age: 46
Lives in: UK
Years with: less then 1 year
About Me: I have been diagnosed with Sjogren's and Mctd in the
last 8 months. I am a 46 year old mother of 2 . I am still
undergoing many tests and am trying to find out more how to help
myself and others stay positive and find a way to cope with all
the symptoms. I also have Raynauds Limited Scleroderma and
Carpel Tunnel Syndrome and Bronchitasis all which have been
diagnosed very recently. I currently take plaquenil and
omoprezol. I would like to talk to others near and far.
~~~~~
E-Pal number 2009-047
Name: James
Gender: male
Age: 33
Lives in: MI, USA
Years with: Pending
About Me: 33 year old male looking for someone to talk to about how to live life to the fullest with sjogrens new to this and i have no family to turn to for advice
~~~~~
E-Pal number 2009-046
Name: Tera
Gender: female
Age: 32
Lives in: TX, USA
Years with: 3 years
About Me: I am a 32 yr old mother of 2 boys, 10 and 6. I work full time in the automobile industry. I love to watch movies and read magazines, books and newspapers. I am looking for an e-pal who is around my age who would like to share advice, tips and sympathize about this crazy disease.
~~~~~
E-Pal number 2009-045
Name: Jodi
Gender: female
Age: 41
Lives in: USA
Years with: 5 years
About Me: I don't really know what I want in a "pal". I guess someone my age who I can bounce things off of. I have 2 kids. I home school. I've been married 22 years. I got diagnosed 2 years ago and I feel like I'm just starting to get an idea of what this means...maybe. I try to laugh as much as possible. I'm very blunt sometimes. Maybe that's 75 words??
~~~~~
E-Pal number 2009-044
Name: Wanda
Gender: female
Age: 35
Lives in: NYC, USA
Years with : recently diagnosed
About Me: I was diagnosed with Rheumatoid Arthritis 2 years ago. Then recently (within the last 2 months) I was also diagnosed with Sjogren's Syndrome and Meniere's Disease. I take many medications for these conditions and I'm looking to communicate with someone who is open to working together to find out ways to deal with this illness, because I'm finding it hard to deal with it alone.
~~~~~
E-Pal number 2009-043
Name: Elaine
Gender: female
Age: 55
Lives in: Ireland
Years with: 5 years
About Me: I've had Sjogren's for 5yrs, have R/A, thyroid probs & IBS. I moved from England to Ireland 2 yrs ago to my husbands home town. We lived in Cardiff, Wales for4yrs. I have 2 sons 28 & 26& a daughter 23. Id like to write to an e-pal in Wales, England or Ireland.
~~~~~
E-Pal number 2009-042
Name: Alex
Gender: male
Age: 68
Lives in: Florida, USA
Years with: 1 year
About Me: I am retired, widowed, aerospace engineer and live
alone. Since 1994 I have been inundated with autoimmune
diseases. First came vitiligo, then pernicious anemia, RA,
hypothyroditis, Hashimoto's disease, then secondary SJS. My
favorite pass-time is riding my motorcycle, which is severely
restricted living in Florida with vitiligo and SJS.
I'm just beginning to learn what living with Sjogren's is all about.
~~~~~
E-Pal number 2009-041
Name: ES
Gender: female
Age: 32
Lives in: Texas, USA
Years with : 1 year
About Me: Was diagnosed with SS about a year ago. I'm 32 years
old a mother of 3 kids. I would like to be able to talk to
someone who is right around my age or anyone.
~~~~~
E-Pal number 2009-040
Name: Cindy
Gender: female
Age: 52
Lives in: Florida, USA
Years with : 6 months
About Me: My name is Cindy and I would really like to talk to
someone who lives in Florida and has the same problems as I
have. I was just diagnosed with a couple different problems
which are Sjogren's, Connective Tissue Disorder and Lupus. Boy,
what a mess I am in and I have been healthy all my life until I
moved here. I would like to talk to someone who lives in Florida
because maybe we could find out why this is happening to us.
Maybe its the climate or chemicals they use for plants and all
the spraying they do. I had a really bad day today and just
thought someone out there could explain to me what's happening
to my body. Thank you
~~~~~
E-Pal number 2009-039
Name: Tammy
Gender: female
Age: 49
Lives in: Florida, USA
Years with : 2 years
About Me: I have been "officially" diagnosed with SS for two
years, but like almost everyone else, I had it for years prior.
I am looking for someone, hopefully in Florida to talk with. I
have incredible fatigue, dry eyes, desert mouth, arthritis in my
hands, forgetfulness, and I just entered MENOPAUSE!! I have a
lot of positive qualities, I love cats, estate sales, Survivor,
my husband and my family. I just really want to share with
someone who knows how WE feel.
~~~~~
E-Pal number 2009-038
Name: Joel
Gender: male
Age: 56
Lives in: OR, USA
Years with : 30 years
About Me: Recently diagnosed with acute changes last 4 wks in my neurological status (spinal cord involvement). I was placed on ivig for 4 d and then every 4 wks and 10 mg prednisone daily. Does anyone have experience with high dose weekend prednisone? My nephew works at Washington University and that is how they use it there.
~~~~~
E-Pal number 2009-037
Name: Rita
Gender: female
Age: 56
Lives in: SC, USA
Years with : 10 years
About Me: I have Secondary Sjogren's along with Rheumatoid
Arthritis and have had many symptom's since my diagnosis in
1999. Dry eye's, corneal ulcers, swollen glands, strawberry
tongue, chronic fatigue, fever, flu-like symptoms, Sinusitis,
breathing problems etc. I am on Remicade and Methotrexate
treatment since 2001 and have gradually done better. I still
have flare-ups but God has blessed me with a great sense of
humor, faith and friends. Although my friends support me, nobody
knows what you are going through until they have been there. I
am looking for people to share my experiences with and to try to
help someone else like myself.
~~~~~
E-Pal number 2009-036
Name: Marcia
Gender: female
Age: 41
Lives in: Missouri, USA
Years with : 6 to 8 years
About Me: I have Sjogrens and do not know of anyone else that has it and no doctor even has a clue what it is around my town. What Im looking for is someone that knows what I am going through to talk to. Someone that can help me to understand or just to talk to in my down times. Thank You
~~~~~
E-Pal number 2009-035
Name: Jean
Gender: female
Age: 56
Lives in: NC, USA
Years with : newly diagnosed
About Me: Have just been dianosed. Dr. recommends I take
Plaquenil as I have all the symptoms even though my blood work
was negative. Want to correspond with someone about my
age/gender who has previously been in good health as I want to
know what I can do to help myself through diet, exercise, etc.
~~~~~
E-Pal number 2009-034
Name: Valentina
Gender: female
Age: 32
Lives in: United Kingdom
Years with : waiting for a diagnosis
About Me: Hi, my name is Valentina, I'm Italian but I have now
lived in London for over 10 years.
I have taught English to speakers of other languages for 5 years
before leaving my job and re-starting on a Psychology degree.
I'm on my second year now. I have started having symptoms in
October, dry sinuses, sinusitis etc. As for now hypothyroid and
diabetes have been excluded and I'm waiting for a diagnosis. I
will join the SICCA project here in London and, hopefully they
will be able to diagnose me. I'm looking for someone who is
going through the same thing, someone who will listen and that I
will listen to.
~~~~~
E-Pal number 2009-033
Name: Jonnell (mother of 4 year old with Sjogren's)
Gender: female
Age: 4 (child's age)
Lives in: NJ, USA
Years with : Just diagnosed
About Me: I am a parent of a 4 year old little girl diagnosed with Sjogren's I need some help and guidance on how to handle the whining and pain she displays. am also interested on info on asthma and sicca
~~~~~
E-Pal number 2009-032
Name: Liliana
Gender: female
Age: 27
Lives in: South Carolina, USA
Years with : Just diagnosed
About Me: Hi, my name is Liliana. I have just been diagnosed
with Sjogren's. I am experiencing the dry eyes and the dry skin.
I have a decreased amount of saliva, but my mouth is not really
dry yet. I also have dry lips. I would like to talk to someone
that has tried natural alternatives & find out about their
experience with that.
~~~~~
E-Pal number 2009-031
Name: Priscilla
Gender: female
Age: 31
Lives in: Texas, USA
Years with : diagnosed 5 months ago
About Me: Hello, I learned I had Sjogren's a few months ago. I would like to talk to anyone who has some tips on how to overcome the fatigue nothing seems to help me. I am on meds. I have a seven year old son in which I need to have energy. Thanks, hope to hear from you.
~~~~~
E-Pal number 2009-030
Name: Carol
Gender: female
Age: 56
Lives in: MN, USA
Years with : 1 year
About Me: Newly diagnosed most likely secondary to my auto-Immmune thyroiditis. I am looking for someone to hold my hand and cheer me on, while I do the same for them...especially someone to laugh with, share the stuff we can't seem to share w/family and friends. I need a pal who knows what's next. THANKS!!
~~~~~
E-Pal number 2009-029
Name: Marsha
Gender: female
Age: 42
Lives in: OH, USA
Years with : 15 years
About Me: Hi all! I've had Sjogren's ,or at least been diagnosed with it, for about 15yrs now. I think I've probably had it my whole life tho. I'm 42 and it feels like the symptoms are getting worse. Usually my approach to it is that's just me and it will get better but I'm starting to think that's not the best way to deal with it. I'm looking to talk to people who are actively managing this so I have fewer days of feeling just plain tired and sore.
~~~~~
E-Pal number 2009-028
Name: Melissa
Gender: female
Age: 35
Lives in: Nebraska, USA
Years with : many
About Me: I am 35 years old and was diagnosed last year with Sjogren's. I have had symptoms and hospitalizations for many years. I am a nurse and sometimes have difficulty while at work. I am looking for someone to chat with and someone to support and cheer on!
~~~~~
E-Pal number 2009-027
Name: Vessi
Gender: female
Age: 25
Lives in: Indiana, USA
Years with : newly diagnosed
About Me: Hello,
I am a paramedic, married, no kids. I was born in Bulgaria
(Eastern Europe), and moved to the US when I was 17. The SS
symptoms started 2 years ago. Until recently I hadn’t heard of
Sjogren’s. I had Lasik eye surgery done about the same time my
dry eyes began, so my dr. dismissed it as a side effect of the
surgery. I have the dry mouth as well, (always have water near
by in the ambulance). My dr. is still testing to determine if it
is SS or LUPUS, or both. I am determined to live my life to the
fullest, and won’t let this disease stop me. Diet changes,
lifestyle changes, I will do whatever it takes. Anyone with
advice or just looking for a friend is welcome to e-mail me.
~~~~~
E-Pal number 2009-026
Name: Florine
Gender: female
Age: 22
Lives in: UK, Guildford
Years with : new diagnostic
About Me: Hello!
I'm french and i'm doing an engineering placement in guildford,
UK. From february 2008,( it started while i was doing an erasmus
exchange in spain..)
I have been through a lot of CNS problems, Optical neuritis,
leg weakness >> Wheelchair...Lots of cortisone infusions (40
days)... but fortunately I'm well again after the infusions.
Sjogren is my last diagnostic after MS and Devic...I'm waiting
to start a treatment. I would be happy to chat with someone who
can understand how difficult it is to live without knowing what
you have.... If you live in UK next to london it would be even
better, we could meet in real life..:-):-)
but if not its also ok I like to travel :-) Hope to talk with
you soon ! Cheers
~~~~~
E-Pal number 2009-025
Name: Debora
Gender: female
Age: 51
Lives in: Idaho, USA
Years with : 3 years
About Me: recently diagnosed, have had symptoms for several years. I am a grandmother and I work full time as a medical coder. It's harder and harder to manage the symptoms and balance family life and work. I don't want to quit, don't want disability - just want to learn how to cope. I'd like friend to talk with that understands the daily struggle
~~~~~
E-Pal number 2009-024
Name: Joy
Gender: female
Age: 22
Lives in: London, UK
Years with : 5 years
About Me: Hi My name is Joy and I am interested in finding an e-pal who shares the same interests as me and is around the same age group. I was diagnosed last year April but have had symptoms since I was 17. I'm currently in my last year of University, studying Information Systems. I love music, the arts, anime, films and games... If there is anyone out there who wants an e-pal to share experiences with as well as receive and give support to, then I would be happy to be that person :)
~~~~~
E-Pal number 2009-023
Name: Shas
Gender: female
Age: 40
Lives in: Munich, Germany
Years with : 10 years
About Me: Hi, I have been suffering from SS for at least 10 years and was finally diagnosed 2 years ago. Fed up of doctors asking if the cause of my symptoms are stress. Like many others I have little understanding from other people about my condition, in other words I have to fight to be sick!! I would love to just be in contact with other sufferers. Drop me a line.
~~~~~
E-Pal number 2009-021
Name: Jackie
Gender: female
Age: 38
Lives in: HI, USA
Years with : 2 years
About Me: Hi my name is Jackie this is the first time I have known of others with my Sjogrens. I feel alone and have 2 other autoimmune disease's. Its hard on my family but i am very blessed to have wonderful friends and family. I just want to talk to someone who knows how i feel and would like any information that i don't know yet.
~~~~~
E-Pal number 2009-020
Name: JJ
Gender: female
Age: 44
Lives in: IL, USA
Years with : 4 yrs diagnosed
About Me: I would like to find some folks close to where I live just to be able to talk face to face with...but also e-pal folks who can understand what we go through. I love everyone on this site and finding a close personal friend would be so very cool. My BF and I like to ride and attend rallies..and as much as he cares for me cannot seem to wrap his head around it.
~~~~~
E-Pal number 2009-019
Name: Aurea
Gender: female
Age: 40
Lives in: NY, USA
Years with : 1?
About Me: Hi all. I'm a 40 year old female with sjogrens. I was diagnosed a bout a year ago. I have two wonderful grown kids who are very supportive. I've worked with animals for the last 15 years but had to quit my job because of extreme joint pain and inflammation. Now after some recovery I am able to go to school and hopefully change my career. I only know one other person with sjogrens and her symptoms are different from mine. Sometimes it feels like I'm the only one suffering from this. So if you would like to talk and give each other advise on how to cope and and make this a little easier to live with, please feel free.
~~~~~
E-Pal number 2009-018
Name: Jackie
Gender: female
Age: 51
Lives in: VA, USA
Years with : 4
About Me: I have had Sjogrens for 4 years now, symptoms are dry eyes, nose, ears, mouth, renal tubular acidosis. Kidney stones, fatigue, aching body, numbness. I'm raising my 9yr old grandson with (ADHD). Until I read about you guys on the internet, I thought my fatigue was in my mind. Now almost 5yrs later and my hair wants to start breaking off. Is there anyone out there that's going though the same as I am, I would like to hear from you
~~~~~
E-Pal number 2009-017
Name: Beth
Gender: female
Age: 52
Lives in: Iowa, USA
Years with : 11
About Me: I've had all the appropriate symptoms of Sjogren's for close to 11 years now (thinking back), but was not diagnosed until about 2 years ago. My eye doctor had a suspicion because I kept going in with inflamed corneas and my eyes were so dry, so I was sent to a Rheumatologist, who said he was certain I had Sjogren's despite my blood tests coming back negative for all the various antibodies. He put me on Plaquenil and an anti-inflammatory called Sulendac, which I later quit taking because it tore up my stomach so bad. Everything about my body is experiencing dryness (eyes, mouth, lips, throat, vaginal area, skin), I invariably hurt everywhere, and I have experienced fatigue so profound it boggles my mind. The parotid gland on my left side swells so much sometimes that it causes me to bite the inside of my cheek. In the past year my dentist has found 3 cavities and 3 chipped teeth I manage to work full-time, but in front of a computer all day, it does no favors for my dry eyes. I use Restasis as well as OTC eye moisteners (mostly Optive). Just yesterday I passed two kidney stones (same thing last year). Lately, while at work, I have had to use the eye drops as often as every half hour. I'm grateful for an opportunity to communicate with others having the same experiences because even though my friends and acquaintances shake their heads in sympathy and wish me well, I know there's no possible way for them to understand what I'm really going through; ditto my husband. I suspect that, in secret, more than half of them think I'm a hypochondriac, and I would put a few doctors in that same category. My third set of blood tests in two years was run this week, with everything still negative. The doc (a different Rheumy than the one who diagnosed me) says he thinks my type 2 diabetes is the cause of ALL these symptoms and he hates to put me through a lip biopsy "just to rule Sjogren's out." It seems to me that the only ones who DO need the biopsy are those who have all the symptoms but don't have the positive serology. Why waste a biopsy on someone who's already got the proof in their blood work? I can offer a lot of understanding to others going through this, and need some of my own!
~~~~~
E-Pal number 2009-016
Name: Gayle
Gender: female
Age: 53
Lives in: OR, USA
Years with : newly diagnosed
About Me: Have had symptoms for years but was just diagnosed with Sjogren's today. I'm scared about the future and would love someone to "talk" to. Anyone interested in support and friendship welcome.
~~~~~
E-Pal number 2009-015
Name: Gayle
Gender: female
Age: 53
Lives in: OR, USA
Years with : newly diagnosed
About Me: Have had symptoms for years but was just diagnosed with Sjogren's today. I'm scared about the future and would love someone to "talk" to. Anyone interested in support and friendship welcome.
~~~~~
E-Pal number 2009-014
Name: Nancy
Gender: female
Age: 47
Lives in: IN, USA
Years with : 5 years
About Me: Hello. I am looking to talk with others who are suffering from this disease to compare notes on treatments used to try and improve our quality of life. My symptoms have affected my life in a very negative way. I once was a very active, outgoing, energetic and overall happy person. That has all changed for me with this disease. I hope we can help each other.
~~~~~
E-Pal number 2009-013
Name: Kelly
Gender: female
Age: 32
Lives in: Wales, UK
Years with : 1 1/2 years
About Me: Hi I am a 32 year old single parent who has been afraid and suffering for about a year and a half so far. am seeing various specialists, hospitals, doctors but the more I read about Sjogren's the more definite i am that i have it. The thing that is the worst is feeling so lonely and that friends and family think i may be going mad. Would just love a friend right now.
~~~~~
E-Pal number 2009-012
Name: Shelly
Gender: female
Age: 37
Lives in: Oregon, USA
Years with : 7 months
About Me: My name is Shelly I have 3 great boys and a wonderful husband. I love animals, 4H, fishing, hunting, and gardening. Basically anything outside. I haven't officially been diagnosed with Sjogren's however, my RA thinks that is what I have. I am scheduled for more test. I have the symptoms that have been mentioned with Sjogrens.
~~~~~
E-Pal number 2009-011
Name: Carol
Gender: female
Age: 46
Lives in: Michigan, USA
Years with : tested positive for Sjogrens antibody
About Me: I'm married with no children and recently tested positive for secondary Sjogren's antibody. The primary antibody I tested positive for seems to be SLE (Lupus) although I don't seem to have any symptoms. I believe I am having early symptoms of Sjogrens (dry eyes, mouth, and tingling in arms/legs). Interested in talking to someone to help me understand this syndrome better, how to cope, or anyone newly diagnosed to chat with about their issues with the disease.
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E-Pal number 2009-010
Name: Carol
Gender: female
Age: 46
Lives in: Michigan, USA
Years with : tested positive for Sjogrens antibody
About Me: I'm married with no children and recently tested positive for secondary Sjogren's antibody. The primary antibody I tested positive for seems to be SLE (Lupus) although I don't seem to have any symptoms. I believe I am having early symptoms of Sjogrens (dry eyes, mouth, and tingling in arms/legs). Interested in talking to someone to help me understand this syndrome better, how to cope, or anyone newly diagnosed to chat with about their issues with the disease.
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E-Pal number 2009-009
Name: Karen
Gender: female
Age: 46
Lives in: Canada
Years with : 3 years
About Me: Hi Friends! Just diagnosed with SS; previously had a hyperactive and hypoactive thyroid, but haven't taken thyroid meds in years. Main problem is extremely dry eyes; no tears. Also have dry mouth, swollen glands and other "symptoms of the day". I work full-time, gazing at a computer screen 8 hrs/day. I'm single with a wonderful daughter; enjoy travelling, concerts, piano, playing cards. Want to meet someone for mutual support/tip-sharing. I won't exclude anyone but I'd be particularly interested in hearing from fellow Canadians who've had success with their drug plans covering eye drops; I've been denied and this is getting expensive!!
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E-Pal number 2009-008
Name: Brenda
Gender: female
Age: 44
Lives in: Iowa, USA
Years with : 8 months
About Me: I have recently been diagnosed with Sjogren's. I have 2 teenage children and a wonderful husband. I am having trouble communicating with so many different doctors about so many different symptoms. Symptoms include; migraine hand other unidentified headaches, joint pain, dry eyes, dry mouth, abdominal pain, IBS, asthma type lung problems, foot pain, hair loss, foot, hand and face tingling and intense fatigue. I have wonderful family support but I feel it would be nice to get to know people, like myself, who have to live with all of this. I am curious to find out how people are able to maintain stable employment through all of the medical issues. My interests include trees, flowers, plants, animals, beautiful landscapes and camping.
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E-Pal number 2009-007
Name: Dan
Gender: male
Age: 45
Lives in: Atl. Georgia, USA
Years with : 2 1/2 years
About Me: I am a happily married man. I have ignored this for way to long, so I suddenly am experiencing a barrage of symptoms. I love coaching my kids in sports or chaperoning field trips. I am not working now as the result of a 2 level lumbar spinal fusion. I used to be active working 2 jobs minimum, now I collect Worker's Comp, which Bites. I hope to settle my W/C claim soon and try to get on with whatever kind of life I can have. I look forward to conversing with people that know what this is like.
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E-Pal number 2009-006
Name: Nicolasa
Gender: female
Age: 19
Lives in: New York, USA
Years with : 4+ years
About Me: MY Name is Nicolasa i go by Nikki for Short. I'm gonna be 19 on Jan 26. I have been diagnosed with Sjogren's & 4 other Chronic Diseases. I was fully Diagnosed in may of 2008 (when i say fully i mean the doctors have been scratching their heads for 4 years trying to figure out everything that's wrong with me). I live my life now for god (through the process of diagnoses i stopped believing in god & blamed him for everything that has happened) but now i believe he has a bigger purpose for me. I Love to sing, i am learning to play Guitar, I'm into photography,& when the words come to me i write. I love music & I watch alot of movies. But other then that i am in college for Early childhood Education. i am also a Hockey Fan (Sabres all the way!!). i'm a very Nurturing person, kind, and i love to help people when they need me. Also i'm a good listener. I've always wondered what it would be like to have an E-Pal, But to actually Email someone who is going threw the same things i am going threw, Amazing!! I am looking for someone to talk to that is my age & someone who is going threw the same things i am going threw.
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E-Pal number 2009-005
Name: Brenda
Gender: female
Age: 54
Lives in: Florida, USA
Years with : 7 years
About Me: I was dx's w/SS after seeing several rheumatologists, and also have fibromyalgia and arthritis. My Sjogren's has been getting progressively worse, and this past month has been almost more than I can take at night time. During the day I can take Evoxac, Plaquenil, Restasis, and NSAIDs for pain, but when nighttime comes, I dread going to sleep. I run a warm humidifier and still wake up about every two hrs to drink water, rub my eyes w/water, and take a mouthful of synthetic saliva, not to mention the pain all over my body. Then later of course I have to go to the bathroom, and the cycle continues. I am so depressed. This is the worst it has ever been, and I have found this site hoping for support from someone who understands. I know there is not a cure, but I can hope that God continues to give me the strength to endure. I just need to not feel so alone right now.
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E-Pal number 2009-004
Name: Tanya
Gender: female
Age: 38
Lives in: Tenn., USA
Years with : newly diagnosed
About Me: I am interested in talking with people who have had Sjogren's for some time or recently diagnosed to understand some of their symptoms, doctors, and how to deal with this disease.
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E-Pal number 2009-003
Name: Bridgett
Gender: female
Age: 34
Lives in:
Years with : 3 years
About Me: I am married with three children and a nurse. I feel I have had this most of my life since age 12y I have had chronic left neck gland infection. until recent have had postive testing so I would love to know if my symptoms are real I have so many question and the doctors don't seem to answer so if anyone could help please email me.
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E-Pal number 2009-002
Name: Linda
Gender: female
Age: 56
Lives in: AL, USA
Years with : 14 years
About Me: I am 56 years old and I have six beautiful grandchildren. I was diagnosed with Lupus, Fibromyalgia and then SS. I've had 3 blot clots on my lungs, I have Hyperthyroldism, Diabetes, Severe pain, Depression, weight gain, forgetfulness and I don't sleep. I had to stop work but now I own a business and it has been hard to keep it going.
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E-Pal number 2009-001
Name: Lee Ann
Gender: female
Age: 55
Lives in: Indiana, USA
Years with : 2 years
About Me: I am married with 3 children. One still at home. Five years ago I was diagnosed with Breast Cancer. Then after coming through that I was told I have RA and Sjogren's. In the past year I have had greater than usual trouble in walking and extreme pain. I have muscle weakness and my legs hurt all the time. Until 5 years ago I was very active and fit. Now I am scared of being in a wheelchair which I now have but am fighting not to give in to it. I think something else is going on, and need to check back with my rheumatologist. Any one else having problems like this? I really don't know all the symptoms of Sjogren's. Maybe this is par for the course?
