Sjogren's E-Pals
E-Pal Want Ads 2005
An E-pal is an Internet Pen Pal. Living with
Sjögren's
Syndrome can be very difficult, very lonely. Only those who have
Sjögren's
can truly understand how we feel. It’s important to have
someone to "talk" to when no one else understands. An
SjSWorld E-Pal can be that special friend for you.
* To get a
Sjögren's E-Pal you must
first place your
own
E-Pal ad. For more information and to
submit your own E-Pal
Want Ad, click here. Requests are limited to 5
at a time.
"Special Requests"
E-Pals Also:
Parent's of Children with Sjögren's looking for
E-Pals, Caregivers of those who have Sjögren's and Teenagers
with Sjögren's are listed as special requests. Please look for "Special Requests" for these categories.
~~~~~
E-Pal
number 2005-037
Name: MJ
Gender: female
Age: 47
Lives in: USA
Years with Sjogren's: 3
About Me: Almost 48 yrs yikes! Bounced from Dr. to
Dr. from Dr......MS no Lupus no wait , not sure. Maybe just
crazy! I am now just getting a support staff of Drs. that
understand me and the disease or at least that I am not crazy.
SJS with CNS involvement. Supportive family. Hobbies all kind
crafts, sewing, reading (if I can). Want to chat with someone
else who is "crazy" and finds humor in life. MJ
~~~~~
E-Pal
number 2005-036
Name: Mary
Gender: female
Age: 41
Lives in: Iowa, USA
Years with Sjogren's: 36
About Me: I am a CMA, married, 2 sons 11 & 15. I
have has ss all my life. Dx at age 23, it started in parotid
glands, they were removed at age 24. Now I have pancreatitis. I
get severe HA, neck pain spasm, back pain, joint pain. I feel
that I am alone I don't have anyone to talk to that understands.
Can I find a friend to share my pains and thoughts with?
~~~~~
E-Pal
number 2005-035
Name: Nancy
Gender: female
Age: 54
Lives in: Texas, USA
Years with Sjogren's: 7
About Me: I have been fortunate and have only had
the dry eyes and mouth. Eyes improved after I was dx and stopped
taking antihistamines for allergies. One month ago, Jan. 2005, I
was dx with NHL, low grade, and have just completed testing to
see where I go from here. I taught school 20 yrs, returned to
school, earned B.S. in Nursing. Retired as school nurse in 2004.
Love beach, needlework, travel, and 4 grandchildren.
~~~~~
E-Pal
number 2005-034
Name: Pam
Gender: female
Age: 55
Lives in: Texas, USA
Years with Sjogren's: 5
About Me: I was diagnosed with Sjogren's 5 years
ago. I have the dry eyes and mouth, but I seem to have more of a
problem with the dry skin and exhaustion all the time. I am
still working, but every day is a struggle. I am married, my
children are grown and I have 4 grandchildren.
~~~~~
E-Pal
number 2005-033
Name: Chris
Gender: female
Age: 39
Lives in: USA
Years with Sjogren's: ?
About Me: I have been diagnosed with IC, FMS, IBS,
and other disorders. I would like someone to talk to.
~~~~~
E-Pal
number 2005-032
Name: Joy
Gender: female
Age: 26
Lives in: Pennsylvania, USA
Years with Sjogren's: recent diagnosis
About Me: I am currently going to school for a
medical assistant. I have recently been dx with sjogrens, I have
had dry eyes for about a year, I have plugs in my tear ducts,
but now I'm finding out that its not just dry eyes. I have had
continuous headaches for 5 months now, which lead to allot of
tests and now finally some result! I have an appt next week to
see what treatment is right for me. I'm constantly tired no
matter how much I sleep. I'm scared b/c I don't know what to
expect and I don't know anyone who has this, my mom is a nurse
and wasn't very familiar with it.
~~~~~
E-Pal
number 2005-031
Name: Valerie
Gender: female
Age: 44
Lives in: England
Years with Sjogren's: 2+
About Me: Hi I am 44 years old and have not been
well for some time and am having problems at work and at home, I
have confirmation that I have Fibromyalgia ang Raynauds but am
still waiting for results from sjs. I work and have 3 grown up
children and a grandson. Would love to talk to anyone especially
in UK with sjs.
~~~~~
E-Pal
number 2005-030
Name: Amelia
Gender: female
Age: 45
Lives in: Georgia, USA
Years with Sjogren's: recent diagnosis
About Me: I have recently been diagnosed with
Sjogren's syndrome and would love to have someone to talk with
about it. I am a college graduate, recently divorced with one
child. I enjoy swimming, reading and traveling.
~~~~~
E-Pal
number 2005-029
Name: Christie
Gender: female
Age: 37
Lives in: Georgia, USA
Years with Sjogren's: 2
About Me: I've been diagnosed for 2 years with SJS,
but I've had it much longer. I'm on 12 or 13 meds a day, always
tired, and starting to have kidney problems. I stay at home,
unable to work. I love to dabble in photography and my passion
is to write. SJS really sucks, but life is what you make of it.
~~~~~
E-Pal
number 2005-028
Name: Lynn
Gender: female
Age: 39
Lives in: Georgia, USA
Years with Sjogren's: 6 months
About Me: I was recently diagnosed with sjs. I
also have been diagnosed with IBS, Fibromyalgia, and a weakly
positive result for Lupus. I am a 7th grade teacher and this
disease is causing me a lot of problems at work and at home. My
family is supportive most of the time, but they do not really
understand. I would like to have an E-Pal to discuss all the
problems. I have found it difficult to find anybody near me that
has this same disease.
~~~~~
E-Pal
number 2005-027
Name: Bob
Gender: male
Age: 55
Lives in: Pennsylvania, USA
Years with Sjogren's: 13
About Me: I am a registered nurse, married, 3
young men as children ages 25, 22, and 20 years and 1 mutley old
dog. Sjogren's has progressed slowly over the years including
dry eyes & mouth but also removal of a parotid gland with
Non-Hodgkin's Lymphoma, radiation & chemotherapy, bacterial
pneumonia, dry skin, and GI issues; looking to share info and
mutual support in this journey with the remaining 5% men who
have the problem.
~~~~~
E-Pal
number 2005-026
Name: Shirley
Gender: female
Age: 57
Lives in: USA
Years with Sjogren's: 2 1/2
About Me: I've had sjs since 2002 as of late
summer and had the dry eye and mouth syndrome starting at the
same time, I've learned to deal with that part of sjs, but of
last year Lymphoma of the stomach and the lungs came about as a
result I'm one of the ten percent to have this condition with
sjs. i've had rituxan treatments last August and now I may have
to undergo more treatments plus chemo, is anyone else
experiencing this situation with sjs? Thanks, I sure would like
to have someone else's story on how sjs effects them too with
lymphoma.
~~~~~
E-Pal
number 2005-025
Name: Barbara
Gender: female
Age: 51
Lives in: Tennessee, USA
Years with Sjogren's: 5-7
About Me: I was diagnosed with Sjogren's in 2000
via a lip biopsy and also have connective tissue disorder. I am
looking for a lady, approximately my age (51) who has this
disease to share our own personal survival strategies in dealing
with the many manifestations of the disease. Right now, I am
wrestling with my skin which is always dry no matter how much
lotion or oil I use on it. I also have rosacea on my face and
the elasticity of my facial skin is seemingly not there anymore.
~~~~~
E-Pal
number 2005-024
Name: Juanita
Gender: female
Age: 38
Lives in: Canada
Years with Sjogren's: 9
About Me: I Have pain and fatigue with kidney
problems. I need help with understanding how to deal with the
pain and the fatigue that comes with this disease. Also I am
looking for someone who becomes very agitated due to being tired
and not being able to think. Do you think sleep helps us?
~~~~~
E-Pal
number 2005-023
Name: Kristi
Gender: female
Age: 28
Lives in: Ft. Hood, Texas, United States
Years with Sjogren's: 1
About Me: Hello my name is Kristi. I am an army
wife and mother of 3 little stinkers. I have had symptoms of
Sjogren's for a while now but just last year diagnosed with the
disease. I am very active as you can imagine with 3 kids, but
mostly I love to sit and chat over coffee, love yoga and hate to
exercise even though I do it anyways. I t would be great to find
someone to who I can share tough times with. Thanks so much.
Kris
~~~~~
E-Pal
number 2005-022
Name: Lindsay
Gender: female
Age: 23
Lives in: New York, United States
Years with Sjogren's: recent
About Me: I'm a very active 23 yr old female, and
was recently diagnosed with Sjogren's Syndrome, though I have
had symptoms for years. I am looking to contact people to help
me to understand this illness better and also to give me some
insight to what kind of long term affects I have to look forward
to. My greatest fears are that it will affect my career and
pregnancy later down the road.
~~~~~
E-Pal
number 2005-021
Name: Vicki
Gender: female
Age: 42
Lives in: Georgia, USA
Years with Sjogren's:
About Me: I am a 42 year old single woman who has
been experiencing many signs of Sjogren's. I am in the process
of being diagnosed and would like to talk to others who have
this syndrome. Can you lead a semi "normal" life and how do you
cope with the symptoms? Nobody I know has even heard of it and I
feel very alone.
~~~~~
E-Pal
number 2005-020
Name: Connie
Gender: female
Age: 52
Lives in: Nebraska, USA
Years with Sjogren's: 4 months
About Me: I would like someone my age. I haven't
had Sjogren's long. And would like someone who can help me
understand what I is happening to me. I like all kinds of
Crafts. Quilting, Sewing, Hooking Rugs, Crocheting, and board
games.
~~~~~
E-Pal
number 2005-019
Name: Kathy
Gender: female
Age: 35
Lives in:
Years with Sjogren's: symptoms for 12 years but, not yet dx.
About Me: I am a mother of 3 ..I have been married
for nearly 13 years...just wanting a friend...just someone to
talk to about symptoms they are having...and just day to day
stuff.
~~~~~
E-Pal
number 2005-018
Name: Helena
Gender: female
Age: 49
Lives in: Rio de Janeiro, Brazil
Years with Sjogren's: 7
About Me: I don't speak English very well. I'd
like to know more about SS, because I'm frightened with this
diagnostic and, in my country, almost nobody knows about it. I'm
using Plaquenil and Prednisone. My SPECT showed severe
hypoperfusion bilateral in parietal lobes, my ANA is I:320, IgG
increase and C3 and C4 decrease, leuchopenya, mesenteric nodes,
Raynaud's phenomen, Schirmer and Bengal Rose positives, BUT,
dysautonomia, malaise, etc. I'm a physician (pediatrist). I have
a history of prolonged fever (mild) and intermittent fatigue
about 7 years. I'm asplenic (trauma), and, for this reason,
everybody thought that my health problems were for this reason.
My diagnosis was confirmed in the last October.
~~~~~
E-Pal
number 2005-017
Name: Patricia
Gender: female
Age: 54
Lives in: Prestatyn, N Wales
Years with Sjogren's: 3
About Me: Actually had many diagnoses before
Primary Sjogrens, from fibromyalgia to possible MS - in fact MS
is STILL being investigated! Being treated at St Thomas, Lupus
Clinic in London. Professor Hughes and his team are wonderful.
Sjogren's has effected my nervous system quite badly - find
difficulty in walking. Being treated with prednisolone, baclofen
among other things. I know it can be a very lonely
existence because most people haven't heard of Sjogren's or how
it effects people (that's just dry eyes and mouth isn't it?) and
I would be pleased to hear from anyone who just needs a chat.
Hobbies are embroidery and quilting - hands permitting. Still
have good sense of humour!!!
~~~~~
E-Pal number 2005-016
Name: Cheryl
Gender: female
Age: 58
Lives in: Canada
Years with Sjogren's: 3
About Me: Hi. I just moved back to Canada from the states a year
ago. I have had problems with dry eyes, mouth, fatigue, lung and
g.i. problems. I take plaquenil for the fatigue which has helped
a great deal. enjoy all types of crafts, reading, music and
computer. live with my husband and cat. I would love to hear
from other sjs members. Cheryl
~~~~~
E-Pal number 2005-015
Name: Ronnie
Gender: female
Age: 37
Lives in: Louisiana, USA
Years with Sjogren's: 2+
About Me: I'm married w/ 5 yr old, wanting to meet others who know
and understand what we are going through. I love to ride my
horse and read books by Nora Roberts, when I have the energy, of
course! Hate to clean house. I'm tired of being tired alone!
Looking for a SJS Pal.
~~~~~
E-Pal number 2005-014
Name: Robin
Gender: female
Age: 35
Lives in: Louisiana, USA
Years with Sjogren's: 4
About Me: I was diagnosed with Sjogren's about four years ago. I
am a married mother of two girls. I have taken a leave from
teaching this year but may go back. I want to talk to others who
know what it's like to live with joint pain and fatigue, etc.
Someone to compare notes with and share about meds.
~~~~~
E-Pal number 2005-013
Name: Brooke
Gender: female
Age: 25
Lives in: USA
Years with Sjogren's: 2
About Me: I am a 25 years old and I have two children 5 and 2. I
would like to talk to some one who is like me. After two months
of having Sjogren's I realized that no one can understand what
its like to live day to day with this illness but someone else
with it. So finally after two years I am trying to find some
other people who have Sjogren's.
~~~~~
E-Pal number 2005-012
Name: Sandy
Gender: female
Age: 29
Lives in: Ohio, USA
Years with Sjogren's: 3 months
About Me: I am a 29 year old mother and student, who was just
diagnosed with this disease. None of my family or friends
understand what I am going through on a day to day basis. I
would like to find another person around my age to talk with
about our symptoms.
~~~~~
E-Pal number 2005-011
Name: Rosario
Gender: female
Age: 22
Lives in: Guatemala
Years with Sjogren's: 6
About Me: I want to find a young woman who suffers from Sjogren's
Syndrome and who can understand me. It is difficult to find
young sufferers of the Syndrome. I would like to compare
symptoms, thoughts and feelings.
~~~~~
E-Pal number 2005-010
Name: Iris
Gender: female
Age: 36
Lives in: Washington, USA
Years with Sjogren's: 2 ?
About Me: I was dx'd with sjs 2 years ago. May possibly have RA as
well. Am doing well with things except the fatigue. Am looking
for someone to chat with who understands what's going on, and
doesn't think it's all in my head.
~~~~~
E-Pal number 2005-009
Name: Ann
Gender: female
Age: 29
Lives in: Euclid, Ohio, USA
Years with Sjogren's: 2 weeks
About Me: I have been diagnosed with Sjogrens very recently and
all I know about it is the few things I've read on the internet
and the ONE brochure my doctor gave me. I just really want to
chat with someone to compare notes and feelings and I'd like to
know what to expect in the future. Tomorrow will be my 1st day
taking Plaquenil....not looking forward to it. Please give me
any insight on the disease that I've just been told I have.
~~~~~
E-Pal number 2005-008
Name: Redetha
Gender: female
Age: 55
Lives in: Alabama, USA
Years with Sjogren's: less than 1
About Me: I was dx with ssj October 2004 - I am married (32 years
to a supportive husband) with 1 son (married) and two four
legged grandkids-one dog and one cat. I hate the pain, dry
mouth, burning tongue, and swollen face. I try and not be a
whiner - so hard. Seeking pal to share info. Recently started new
med which has helped neuropathy. - Cymbalta. I teach Special
Education -- tiredness and vision a problem at job.
~~~~~
E-Pal number 2005-007
Name: Jessica
Gender: female
Age: 25
Lives in: California, USA
Years with Sjogren's: 2
About Me: I am a first grade teacher living pretty well with
Sjogren's. I am still learning how to live comfortably and get
along with doctors. I go through many ups and downs and I often
feel angry and frustrated because of my illness and the lack of
my doctors' understanding. I do a lot of my own research, and I
actually ordered the blood tests for an autoimmune disease. I
would like to talk to another young woman who is dealing with
the working world, dating, and keeping up with friends. The
future is hazy, and I would be nice to talk to someone who is in
the same place in their lives to support each other through
life.
~~~~~
E-Pal number 2005-006
Name: Valerie
Gender: female
Age: 47
Lives in: New York, USA
Years with Sjogren's: 2
About Me: I was diagnosed about 2 years ago after going from
doctor to doctor that tried to tell me that my joint pain was
"just arthritis" I have the dry eye and mouth but find the other
symptoms much worst. My join pain gets unbearable. I also have a
lot of trouble with my palms and bottom of feet tingling and
burning. Another new problem is muscle spasms. Do any of you get
them. I get them my my calves, biceps and lower back. Any
insight from anybody will be much appreciated.
~~~~~
E-Pal number 2005-005
Name: Dina
Gender: female
Age: 40
Lives in: Iowa, USA
Years with Sjogren's: 2
About Me: I am a stay at home mom of a 14 and 16 year olds. Been
married for 18 yrs. I have been fighting some form of RA for 12
yrs. Right now my diseases stand as these, SJS, RA, Fybromyalgia,
degenerative bone disease, OA, Diabetes, High blood pressure,
Depression, Edema, Low Calcium, iron, potassium. I need a friend
who understand all this, I look normal on the out side but the
inside is deteriorating like I was a 100. :)
~~~~~
E-Pal number 2005-004
Name: Betty
Gender: female
Age: 37
Lives in: New York, USA
Years with Sjogren's: 7 months
About Me: Hi, I am a mother of four young children. I have been
taking hydroxychloroquine for 5 months, and I actually feel
worse than better. For me the worst part is the extreme fatigue
, hair falling out and the aches and pains. So far I can deal
with the dryness although it is annoying. I would like to find
some people to talk with to see what is working for them and to
just vent with someone who knows what it's like to live with
this syndrome. Thanks. Sjogren's bites!
~~~~~
E-Pal number 2005-003
Name: Nancy
Gender: female
Age: 52
Lives in: Oklahoma, USA
Years with Sjogren's: 16
About Me: Living with Sjogren's Syndrome for 16 years. Wanting to
compare symptoms, treatments, etc with others. Working on
Masters in Education. Have two children with disabilities,
multi-handicapped son and daughter with bilateral cleft palate.
~~~~~
E-Pal number 2005-002
Name: Marjorie
Gender: female
Age: 57
Lives in: USA
Years with Sjogren's: 5
About Me: I'm a working woman with a husband, two grown children
and two extraordinary granddaughters. (Don't we all think our "grands"
are the cutest/smartest/most amazing creatures on the planet???)
I was diagnosed with primary SJS and fibromyalgia about 8 years
ago. In reading about SJS, I've read that organs of the body
(kidney, lungs, blood vessels) can be affected, but they don't
say HOW. Anyone out there know?
~~~~~
E-Pal number 2005-001
Name: Patricia
Gender: female
Age: 34
Lives in: Brazil
Years with Sjogren's: 1 month
About Me: I'm a 34 y-o mother of two little boys (ages 1 and 4).
Used to be very good-mooded person, now living on a day-by-cay
surviving basis. Really in need of some talking to find my way
back to a happy life. Have a little bit of eye symptoms, but
great thirst and mouth dryness. Seems I have the Sahara Desert
on my tongue.
~~~~~
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