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The many people that now use our message board, chat room &
email group only know each other by name. So this page is a chance
for the regulars to introduce themselves, so you can get to know
us a bit better & know who you're talking to.
Any of you can submit info and a photo of yourself (if you wish),
email addresses will only be shown if you ask me to. Please email
the info to me & try to keep the photo sizes small (gif
or jpeg).
 I'm
Joanne Forshaw & I run this site. I live in Wigan, which
is in the North West of England. I was diagnosed with SLE in May
1996 when I was 21. My main symptoms are joint & muscle pain,
fatigue, mouth ulcers, & rashes in the sun. I take Plaquenil,
arthrotec (NSAID), dothiepin, & tramadol (painkiller). I used
to work for the Benefits Agency but I was medically retired a few
years ago; I hadn't worked since becoming ill in January '96. I
studied art & design at college, specialising in textiles. I
recently started up my own business, workingas a textile artist.
I started this site a few year's ago, & I never imagined it
would grow so big! It was Ann who suggested the forum, which initially
was very quiet, but now it seems a small 'community' has grown from
it, which is really great.
 Name
: Ann Lister
Live : Renfrew, Scotland
Age : 48
Birthday :12th December
Diagnosis - MCTD-overlapping Lupus.R,A,Sjorgens Syndrome.- APS
I was dx only 3 years ago although I feel I have had this for
many many years. I had a full blown stroke 12 years ago which was
just put down to an accident but now it is known I have 'sticky
blood' > for this I take aspirin but have in the past and may
again have to take Warfarin.
My symptoms became worst after I had a hysterectomy about 14 years
ago , it was a total one and I thought it was lack of hormones that
was causing stiffness etc. It was discovered I also have osteoporosis
and they put me on HRT which I was promptly taken back off of after
having a stroke. I also have poly arthritis and can't walk very
far. At this time I dont work , receive invalidity and Disability
Living Allowance and have now sought out many new interests.
I have a lovely little dog, Abbe. I cross stitch (when my fingers
allow). I read everything from Oscar Wilde to Catherine Cookson.
I like Jigsaws, Videos, Movies and the Theatre. I also like eating
out and being spoiled. I would love to do something practical to
help other lupies but not sure what I can do but please feel you
can always approach me and i will listen and help if at all possible.
ann.lister@net.ntl.com
My name is Caroline Hamburger ( yes,
it really is! ).
I am not a frequent contributor to the newsgroup, but I am a frequent
reader.
I live in Oxfordshire, Great Britain, in a small village. I have
had systemic lupus for 20 years, but was only diagnosed 8 years
ago. I am 44, female, separated for 4 years and have 2 girls
aged 19 & 17. I also have a dog a cat and 2 horses. I mainly
do carriage driving with my horses although I do sometimes ride
them. I work for 20 hours a week at a software company in the village
( admin., not clever stuff ). My email address ( if you wish to
publish these, Joanne) is carolineox8@hotmail.com
AnnAB's story-
My name is Anna Adams-Buettner; Longo is my family name. I have
three wonderful children, Laura, Curt and Sam, my boys live with
their dad in a small town in Indiana and my daughter lives on her
own in Ohio. I live in Toronto Ontario with my fiancé. I came to
Canada after realizing that I wasn't going to find medical care
in Ohio with no insurance and no ability to work, and after finding
a wonderful man who spent endless hours learning about Lupus and
talking with me on line.
I was a sick child, born w/bone placement problems in my legs,
always had the croup, allergic to everything. I had a stomach ulcer
at 14, which was treated by diet only and was my first experience
with a doc who told me the ever popular, "it's only in your mind".
I became a vegetarian (no meat, no milk, no spice either) and found
myself becoming quite knowledgeable in vitamins, herbs, chemical
exposure, and legal problems of sharing that info w/others as well
as exercise and I grew to love my bicycle and my free weights and
weight bench! Having ADHD school always made me feel tired and bored,
so after high school I left home and moved to California. I spend
the next 3 years getting an education on the differences between
the worker bees and the upper class. I became a great sales person
(I can sell freezers to residents of the Arctic Circle) but always
felt guilty if the product was less then perfect! I was diagnosed
with Lupus in 1996 and I've been without a doctor (insurance or
permanent employment) since 6 months after being diagnosed. I've
tried a lot of alternatives in looking for a cure or remission for
my Lupus. I don't recommend any alternatives to anyone else; it's
very dangerous to be without a doctor. I use Reiki (also called
Healing/Helping Hands) but that I consider to be group prayer. It
helps me, but it's not a cure. I also use meditation, healthy eating
habits, I try to eliminate chemicals from my environment as well
as emotional stress and I cannot eat pork or beef. I've had migraines
since I was in high school; the only treatment I ever got was in
the emergency room. I had two miscarries before my first child was
born and during that pregnancy I had a 7 centimeter cyst on one
of my ovaries that disappeared during the 6 weeks after Laura was
born. It was also during the delivery of my first child that the
Lupus mask appeared on my face, first bright red, and then a brown
color. My OB GYN told me it was from the strain of 24 hours of hard
labor and it would go away. I believed him! 5 months later I developed
blisters from working in my garden in the sun, I used to get a tan
in April that other women were jealous of, I've got that greenish
Italian skin tone that tans easily. I'd never had sunburn before
in my life and thought that's what the blisters were. I still get
blisters from sun exposure, as well as fluorescent lighting.
Two years later I noticed I couldn't hear well and was dizzy often
and had massive headaches that nothing helped! I had an MRI done
(looking for a tumor) and was diagnosed with Meiners disease and
told I was allergic to salt and that it was causing pockets of water
to form behind my brain. Told me I'd be deaf in 5 years and in a
wheel chair. Given scripts for potassium and a water pill. The scripts
hurt my stomach, badly, and so I turned once again to diet and vitamins
in food sources. Now I have perfect hearing, so I think it was the
Lupus.
Over the years with this disease I have developed muscle swelling,
brain fog, seizures, Hughes Syndrome, nerve pain and swelling. I
have IBS problems (that's why I don't eat beef or pork, eww, messy!)
and I have been so disabled that I have been unable to walk a 5-foot
distance. My lupus tends to move throughout my body, like a wave
but I have been lucky enough to recover after each flair, even the
one that lasted for several years.
I try to stay positive, stay strong, give more than I get and I
try to remember that each day counts. I hope this letter helps.
Live for the moment. annablongo@yahoo.com
Name: Sandy Berlingo
Address: Greenwich, CT USA
I am 56 years old, married, with two grown daughters (one married
and one engaged to be married in September 2000), I also have a
13 month old granddaughter who makes me forget my aches and pains.
I am not employed but I volunteer at Greenwich Hospital one day
a week. I was playing golf until this summer when I started to feel
so awful. I also enjoy gardening a lot.
Diagnosis: Auto-immune Lupus also Chemical Lupus (positive-ANA,
Anti Ro and Anti Histone). Diagnosis in early August, 1999 after
not feeling well for about a year. I suffer from migraine headaches
and it was thru a MRI that a neurologist first suspected I might
have lupus and checked out the ANA. My complaints are fatigue, sore
muscles and joints and costochondritis (sore ribs) I am currently
taking plaquenil and inderal (for migraine headaches the plaquenil
gives me) also celebrex or vioxx for soreness. I also have had Raynauds
for about 30 years and was diagnosed hypo-thyroid about four years
ago.
Hi my name is Clare
Palmer I am 32 been married for 15 years and have 2 children one
girl(14) and one boy(10). I live in Perth Western Australia with
my Parents and siblings close by. My parents are English and all
our family live in England but my parents moved here before all
us kids were born. I used to be a fitness fanatic until I had my
second car accident and was diagnosed with lupus which has made
it very hard to get back to aerobics (which Ilove) and to the gym.
At the moment I play Badminton once a week which i cope with O.K.
love Motorbikes and we have a couple of 3 wheelers which I play
around on a lot which is relaxing and I get heaps of enjoyment from.
I was diagnosed with lupus some 15 months ago and still coming to
terms with but finding this site has been great and I met Denise
on the forum who only lives 5 mins away so that was great. I don't
have any organ damage but have lots of other symptoms which are
still popping there ugly heads up. I have severe joint pain, hair
loss, swelling, bruising, fatigue, depression, mood swings, rashes
and other ailments but u get the picture. I have a very loving family
who gives me heaps of support and my parents are great, my mum is
my best friend and I couldn't get though this without her she has
been my rock and I love her more than life itself along with the
rest of my family. I have 3 brothers and one sister and my husband
has 6 brothers (mother was mad LOL) so between us we have a big
family. I also have 3 maltese shitzu dogs a 15 yr old cat and 3
ducks., I love my dogs (absolutely love animals) one of them is
my baby called Toby he is my little hunk as I call him and we are
never far apart for long, he's worse than a kid. The other 2 dogs
are my daughter's and sleep with her but they are my babies also.
I would like to say thank you to Joanne for this site and to all
you wonderful people who write on this forum its the best thing
I have done by finding this site and imagine it helps everyone who
is coping with this disease. thank-you, Love Clare Palmer xxx
My name is Jane Robinson.
I am 30 and have been diagnosed with lupus for nearly 7 years. Since
then diagnosis of Raynaud's and fibromyalgia have followed. Hughes
Syndrome is also suspected. My rheumatologist thinks that my lupus
has been with me since puberty when I first showed signs of a malar
rash and joint pain. Fatigue was the next symptom. I have had lung
involvement as well as problems with my kidneys. More recently I
have had cerebral involvement with periods of lack of coordination
and cognition. Migraines and persistent headaches are also a frequent
symptom. I take prednisolone (corticosteroids), hydroxychloroquine
(plaquenil), azathiaprine for immuno suppresssion and dihydrocodeine
for pain. I am also an asthmatic.
I am too stubborn to admit that perhaps I should "retire" but
do think that it is too important for my mental health to still
have something to get up for in the morning as well as an income!
I work for the NHS as an information analyst. Generally speaking
they are very sympathetic to my health needs which is comforting
considering that ultimately, we are all in the profession of providing
care!
I live on my own in Peterborough with a neurotic cat called Flossie.
She knows when I am not well and gives me a lot of attention!
My parents live in Kent, my sister in Warsaw, Poland. I have a
lot of friends locally that know the warning signals and take good
care of me when I am "off my feet".
My hobbies include travelling, visiting my family in Poland as
well as friends that I have found all over the world from various
trips, keeping in touch with family and friends, eating out, swimming,
yoga (I like to keep as many muscles and joints working as much
as possible) and reading. I edit the Cambridgeshire Lupus UK braanch
newsletter as a small contribution towards helping the charity and
fellow sufferers.
One of my other main interests is patient education and partnership.
I believe strongly in it and believe that there is a lot more that
the NHS could and should be doing. I am involved with patient partnership
projects professionally and am trying to work with Lupus UK to establish
a self management course for lupus sufferers. I think that there
is an awful lot of useful information available on the world wide
web but there is also a lot of poor information as well and we must
be able to work this out for ourselves, learning about good research
methodologies and how to interpret professional articles.
My name is Sharron Lee,
I am 54, married with 3 children ages 35, 34, and 25. We recently
sold our house in West Virginia and moved to Eugene Oregon. I was
diagnosed with Lupus in June 1999 after years of symptoms that the
doctors all said that it was nerves and put me on tranquilizers,
muscle relaxes and have sent me to psychiatrists and counselors
with a dx of manic depression. I was in so much pain 3 years ago
that I could hardly walk, with the urging of a friends mother who
has Lupus, I went to her doctor and was told you have all the symptoms
but not the disease..that just convinced me that it was all in my
head so I denied anything was wrong but when my friends mother seen
the report she said Sharron, you do have Lupus. Finally my legs
started burning really bad and I was so tired couldn't even eat
cause it was a chore to lift the fork. I went to a nurse practitioner
and she ran the tests and confirmed that I do have SLE. My husband
is very supportive, but of course frustrated cause he can't fix
it so I don't let him know how I feel. That is why this forum is
so comforting to know there are others out there and I am not alone.
I have had problems with my legs aching since I was a child which
the doctors all said it was growing pains.In my early 30's there
was a year that I was on crutches and I kept telling the doctor
it feels like the bones in my legs were on fire but after 3 days
in the hospital and all kinds of tests they could not find anything
wrong then it just went away. Thank you Joanne for starting this
web page for all of us and especially for those of us who suffer
in silence in our everyday life. At this time I am in a flare and
can not afford to go to a doctor until I get a job which I have
been looking everyday. Hopefully one will come up soon. My husband
is on social security disability so is unable to work. I try to
keep a positive outlook and if anyone would like to email me that
would be fine. Maybe I can help someone else just by listening and
giving some encouragement." softseabreeze@uswest.net
 Name:
Mrs. Linda Nowaczyk
Live: Shelton, Ct. USA
Age: 56
Dob: 2/14/43
"I am married (2nd.) to Joseph, age, 53, a plumber, have one daughter,
Kelly, age 32, who may also have Lupus. I have been "sick" almost
a lifetime going from doctor to doctor complaining of many symptoms
that were debilitating, with a lot of pre-period "flu" like symptoms,
was a sun-worshiper for years, but used to get very sick after,
1st. marriage ended with the birth of my only child. Symptoms got
worse, and the fatigue monumental. I floundered for many years,
having "nervous breakdowns", and being told "everything is in your
head". Married my second husband at age 36, six months into marriage
started to get severe pains mostly at night in my shoulders and
hips.(note: I did have joint pains as a child; and was told it was
growing pains!), thought I could be getting M.S. Again, going from
dr. to dr., but this time, my husband was on my side and went with,
and I noticed my drs. started to listen to "me" (as women are not
taken seriously many times) and finally in 1991 was diagnosed with
SLE by rheumatologist. Was put on steroids, methotrexate, placqenil
and pain drugs. Also went for physical therapy for many years prior
to actual diagnosis - thought to have fibromyalgia. (One Dr. said
I had "psychogenic rheumatism - in other words, "all in your head"!).
In 1992 was diagnosed with breast cancer. Could not undergo chemo.
because of the Lupus, so had mastectomy without reconstruction.
Also the day before my mastectomy, July 1992 had to go before a
judge to fight for SSDI and won. Have now been on disability since
then. But have to be reviewed every 3 years. My disease has progressed
and have Lupus-cross/over with Scleroderma symptoms and Sjogren's.
The pain is myositis and I am now on a patch given to cancer patients
for pain. Also on many other drugs. I get esophageal ring spasms
that mimic a heart attack, and rectal spasms also. I haven central
nervous systems damage; causing major depression, anxiety and panic
attacks. I just learned to use the computer a year ago and it has
been wonderful to talk to others who suffer the same. I know have
a 5 year old granddaughter too. I try to get through each day. I
get dressed, still drive (as little as possible), play some bingo
with the seniors. My husband is a train enthusiast, so I go to train
shows with him; but now have a wheel chair, as I can't walk, stand,
or sit in any one position too long without causing severe pain.
I have chronic rhinitis (inflammation of the mucus membraines of
the sinuses - a symptom of Lupus also), a hyptonic bladder, that
means there is nerve and muscle damage and I cannot properly void,
and rectum damage that causes the bowels to backup. My eyes are
constantly dry, blurry and sometimes very painful; use special eye
lubricants. Have not had too much support from extended family or
friends; as they don't believe I am sick because "I look good".
So the support I get here really helps to keep me going. I used
to be gourmet cook, but now any lengthy exertion is too painful,
so I just watch the cooking shows on TV. now. I like poetry and
have written some, and a few were published. I like to keep up with
current events. I have several pen-pals; and one in England for
almost 11 years now. We plan to meet one. Well, I guess I have said
enough. Please write me - we can learn from each other and maybe
the world will begin to learn more about this life-altering, and
sometimes devastating disease. Thank you for taking the time to
read this. Sincerely, Linda :0)'s."
1Lindylou@snet.net
"HI well I am 37 years old
am from the UK and was diag with s l e 21 years ago,although looking
back they think I have had it since Iwas about 12. My other problems
are sjogrens, raynauds, fibromyalgia, lots of strange symptoms I suffer
very badly with joint and muscle pain, tiredness, insomnia, numbness
and in Dec 98 had a pulmonary embolism for which I now take warfarin.
My other meds are dothiepin, nifedipine, cisapride, plaqunil, artificial
eye drops and saliva spray, and pain killers. I am a very positive
person (well most of the time) I am married and have two lovely
children ages 11 and 8 I have a very close family and some very
good friends, I am told I am too stubborn for my own good!! but
I feel that is not a fault.I try to be very independant, and I have
a very high pain level, which is a good job really!! things have
to be just right I can't stand mess and think everything should
be in its place. I as most of you too are a medical students dream
and at the hospital I used to go to I was the one they made a beeline
for, but I dont mind, anything that can help other sufferers I am
all for. I think its high time the government recognised lupus
if one of there own had it I am sure it would then be put on the
map!!. I have had my Lupus mimic many things including meningitis
when I was 19, I was told I would not have children,or not be able
to carry full term,both my babies were overdue!! when I was pregnant
with my daughter at 7 weeks I had chickenpox but had them on
the lining of my brain which made me very ill, well I could go on
as I am sure we all could, please feel free to e mail me anytime.
hugs" Christine.
 "My
name is Brigitte Pedersen and I live in Fort Erie, Ontario,
Canada. I was born October 23, 1971; currently 28. I took sick in
1996 starting with recurring throat and ear infections that I just
couldn't seem to fight off. Early summer 1997 is when it hit hard
with some kind of brownish coloured rash spreading all over my hands,
between my fingers and up my arms. The doctor said it was some type
of auto-immune, conncective tissue disorder and focussed on 'Scleroderma'.
The blood work ANA Titre was 1:80 with a speckled pattern that coincided
with connective tissue disorder Scleroderma but was never diagnosed.
Lupus was thrown around a lot and thus far they've figured that's
what it could be; everybody bit the Rheumatologist that is!! Isn't
that always the case though! Along with possible Lupus I've recently
been diagnosed with having the early stages of colon cancer; Proctitus
along with IBS. As long as I'm diligent with my meds (which is a
big challenge for me), I should be okay but the thought of having
to take these meds for the rest of my life gets me annoyed! My main
ongoing symptoms of Lupus include: chronic joint pain, migraines,
chest pain, mouth sores leaving the inside of my mouth feeling raw,
hair loss at times, little water blisters on my fingers and hands
from time to time, VERY sensitive to sunlight and become very sick
with any sun exposure, emotional and very moody (my kids suffer
because of that one!) and shortness of breath. There are many other
symptoms but I won't bore you to death with them! :-) I have two
children; Shenelle is 9 and Zhavion, my son will be 5 in April.
I'm a single parent who had a career in the Marketing Industry with
Casino Niagara in Niagara Falls, Ontario until a new director came
along who was not tolerant of the accomodations that were made for
me at work due to being sick and he put me through living hell with
mental and verbal harrassment. I exercised my legal rights and they
ended up buying me out. I feel that 'Lupus' has really given my
life a lot of problems but I refuse to succomb to it. I passed through
the rigorous application process to become a Canadian Mounted Police
Officer that took a year and then when I was accepted to the force,
had to forfeit because I became so ill. I'm actively searching for
a new career and am looking into taking a course and teaching 'English
as a Second Language'. I'm a youth basketball coach and a soccer
for my daughter's team and a leader with Girl Guides of Canada (comparable
to Girl Scouts). I'm also looking into becoming a Foster Parent.
I like to keep busy because it keeps my mind off being sick and
hate sitting around and feeling sorry for myself. I will continue
to plug away and push the doctors until they finally come up with
a diagnosis and then I'll prove to them that there really is something
going on with this body! Thank you for taking the time to read my
story and should you care to e-mail me, you can reach me at: blp@iaw.on.ca
"
Debbie Coffman. "I
was diagnosed with antiphospholipid antibody syndrome in January
of 1997. It all began when the left side of my body started to malfunction
the arm tingled, I lost strength in the left hand and fingers, the
left hip joint began to be stiff and the left leg was dragging.
I also experienced major chest pains and thought maybe it was all
heart related. Our family practice dr. thought at first it was MS
& sent me for a cat-scan, an MRI, and EEG and lots of blood work.
All came back negative. Then he referred me to a neurologist who
did another MRI and other neurological tests. These, too, came back
negative. He then referred me to a rheumatologist who did additional
blood work and descovered the anticardiolipin antibody. He asked
about my pregnancy experience and when I described! the complications
I had then (1988) he suspected that I had had the disease in its
latent form as far back as then. I have lost sensation on the left
body side, I have muscle aches and fatigue chronicly, I have migraine
headaches, and my psychological tests reveal that I have cognitive
function disruptions in the area of language, cognitive reasoning,
and short term memory loss. One of my neurologists feels that I
probably have had a small stroke, even though the MRI and CAt scans
don't show it. I take Plaquinil for the syndrome, I take Soma for
the muscle aches and pains, I take Ticlid for blood thinning, Effexor
as an anti-depressant, Ambien for sleep, and either fioricet or
midrin for the migraine headaches. I also have GERD problems & I
take Prilosec for that. I was awarded disbility this year, so I
no longer work full time. I was a church secretary and pianist before
this. I have an 11 year old son and 3 step-sons. I am married to
the most wonderful man in the wo! rld. If not for him, and the Lord's
good grace, I never would have made it this far. I have a siamese
cat that I love, I read like a maniac, I like music, and this disease
restrains me more than I was ever used to before. That's why I'd
love to be able to chat with some of you! Thanks for listening.
I'll do my best to reply to as many e-mails as I receive."
ccoffman@lwol.com
 My
name is Brenda DeRidder (although I prefer Brynn and have
to repeat it twice to anyone I introduce myself to!) This could
get pretty lengthy if I'm not careful so I will try to contain myself
a bit. I have always been an "open book" type of person. Grew up
in a small town in Michigan right on the lake (love being near the
water even though I don't go in that often), married at 17 as most
did in that area (graduate high school, kids, station wagon, dog)
and had two beautiful children, Joel is now soon to be 22 and still
lives up there, and Stacy is 19 and joined the U.S. Coast Guard
at 17. She lives on the east coast of Florida (I live on the west)
and is my best friend. First marriage lasted 12 years and remarried
right away (we all make mistakes!) which lasted 4. Second husband
and I moved to Florida which was one of the best things I have ever
done. I love it here. I am now 41, single, living on my own this
past year for the first time in my entire life (and loving it) now
with kids and ex's gone. So strange not being "answerable" to someone.
I work my regular 40 at a large cardiology office as a medical transcriptionist
and also a second job at home for a rheumatology practice (on line
ALOT while I'm working to break the monotony!). I never dreamed
that the rheumatologist that I was typing for would end up being
my doctor and I'd be typing my own office notes! I was diagnosed
with SLE in Nov. of 1998 a month after my father was diagnosed with
pancreatic cancer. They say God gives us diversions sometimes and
that was sure a doozey! I spent 3 months this last spring living
with him and my step-mom, helping to care for him until he passed
away in April. Seeing his suffering sure minimized what I was going
through. The strange thing about all this is that in retrospect,
I obviously had symptoms for years before I was diagnosed (apparently
mild flares) but I do have quite a high pain tolerance (and self
worth that was in the toilet) so I just kept trudging on, thinking
"boy, as I get older my body sure just doesn't feel very good" and
by the time I hit 40 I couldn't figure out how anyone could ever
make it to 70! It's kinda like when I was in my teens and 20's,
I thought my hearing didn't seem very good but you have nothing
to compare it to. Turns out I had otosclerosis and would have eventually
been deaf had it not been for surgery and otic implants. (Now I
say I have bionic ears!) It seems the same with the fatigue and
just plain feeling SICK and ACHY. I thought that was just how I
was supposed to feel. What finally brought it all to a head was
changing family doctors because of insurance changes at work and
doing the "new patient physical thing". I mentioned that I seemed
to be losing my hair (which I had TONS of) and even though he had
doubts about me saying 1/3 of it was missing at that point because
there was still so much, he threw an ANA and thyroid panel along
on my new patient labs. The rest is history. I was informed that
I had an appointment with the very rheumatologist that I typed for
and soon after was sick as a dog. My rheumy is good and knows her
stuff, but as far as empathy or being informative to me, forget
it. I have learned what I know in my own searches for info. I report
symptoms to her such as the hair loss, low grade fever for six weeks,
PAIN, swollen lymph nodes, a few migraines and FATIGUE, and she
makes note of them (but only some) and never comments much except
to say they are general symptoms and could be related to any number
of things. If that is the case, why do I have SLE then!? She's the
best in the area, but there is a major part of my care (mostly the
mental parts) that I feel is very lacking. Started with a therapist
who urged me to find a support group. Thank God I have found you.
My family is mostly located in Michigan and are very afraid but
at a loss as to what to do for me. I have felt VERY alone and scared.
My latest problem has been fatigue (the prednisone seems to be controlling
the pain lately) and I couldn't work an 8 hour day all last week.
Also behind in my second job at home. I don't know what I'm going
to do without enough pay coming in to make my bills. I am out of
sick time at work. My mom keeps saying to go on disability but I
know that is nearly impossible and when I am well I am TOO well
and know I would not get it. If I could only take ONE month and
rest and get caught up in my life and organized a bit I think that
would be the ticket. As for the positive aspects of my life besides
my kids, I have an African Gray parrot who talks more than I do
if that's possible, and the joy of my life, my little 3 pound Yorkie,
KayDee. (stands for killer dog!) She is always at my side and knows
when I'm not well. As far as hobbies, my biggest joy and source
of pride is my Harley. I waited SO LONG to get it and finally did
this last fall. When I'm riding, I'm not sick and it gives me such
a sense of power (not to mention the looks you get and hearing "hey,
that's a gal on there!) haha!! I took a riding course previously
and was the only gal who passed! It makes me very proud. Well I've
bored you all long enough. Would love hearing from any and all of
you. I have lots of love to give and lots of room in my heart for
anyone looking for an honest friend. Thanks for being here, Brynn
"My name is Maria Mason
and I'm not working at present. I was diagnosed with Lupus in 1996,
at the age of 41. I see a dermatologist at the hospital about three
times a year and I see my own GP whenever. I have had 2 flare-ups,
but not much chance to rest as I have been my husbands carer since
1991. My husband has now passed away.
In 1983 I had 2 epileptic fits - for no known reason. So I started
taking Tegretol. I had an EEG which was 'clear', but I had been
seen having a fit. It was decided that I have fits when I get over-tired.
At about the same time I developed asthma, for which I take 4 inhalers
and a tablet,daily. Apart from this, I have had good health all
my life.In 1995 I had to have a hysterectomy. And it's been downhill
all the way since then! In 1996 I had a 'lump' (extra large spot)
on my body which my GP immediately diagnosed as Ringworm, add he
gave me some cream and said see you in 2 weeks. When I went back,
I saw a different doctor who said it's not ringworm, don't know
what it is. By now, I was virtually covered in these lumps, even
on my scalp. And boy, did they itch! Within a week I was at a dermatology
clinic, where I was told 'don't know what it is, never seen it before'.
A biopsy was done, and a week later I was told SLE.
I now see a dermatologist, a rheumatologist - I have pains in my
ankles, knees and hips for which I take co-proximol, and my GP.
I was on antimalarials for a while, but was advised to stop them
as they were affecting my vision. I now know more about lupus than
all 3 of them put together!
I am hoping to be starting a course soon to update my computer
skills, with the hope of getting a job within my limitations. I
get tired very easily, and in the last 9 months I've had antihistamines
because I've been producing too much histamine - again, for no know
reason. My e-mail address is mariam@eidosnet.co.uk."
My name is Ann Gay.
I live in Nassau, Bahamas, and have been here for 18 years. I'm
44 years old, working as a medical assistant to a wonderful gastroenterologist.
My husband, Lloyd, is a Bahamian. He runs a small guest house which
provides us with a comfortable living. We have both been married
before, and have five children between us, mine: Claire age 20 and
Christopher age 18, his: Joyanne age 34 (with three duaghters),
Sean age 32, and Lincoln age 19. Claire and Chris are in school
in the UK.
I was given a sort of diagnosis in 1997 of MCTD/lupus, after an
ANA done because I was having servere, crippling joint pains all
over, with headaches, Raynaud's symptoms, skin rashes, and a mysterious
rash on my cheeks that came and went a couple of times, came back
1:1280. There were some other tests, can't remember them all now.
I have psoriasis as well. Unfortunately, there are no doctors here
that I can turn to for any real help, as we only haveone rheumatologist,
and I don't have much faith in him after he tried to brush off my
symptoms as being psoriatic arthritis. My ANA was speckled pattern
by the way. Another doctor suggested MCTD, but he is only a GP,
and so I don't feel I have anyone to turn to. My brother in law,
also a doctor, and my boss study anti-aging medicine, so I am trying
a lot of alternative stuff, and am on DHEA 50mg daily, which seems
to have helped tremendously. Lloyd and I now play tennis 2-3 times
a week, I can drive again, and am studying for my B.Sc. in nutrition.
My e-mail address is: wildbutterfly@iboxtv.com,
and I welcome new friends any time.
"My name is Tanya
Busse. I live in Southern California USA (great place for staying
out of the sun huh? :).)
I was diagnosed when I was 14. I was always sick. I went 2 years
of having the "flu" before someone suggested to my mother to get
me tested for Lupus. I have been diagnosed by at least 6 doctors.
I has been hard on me. My family really doesn't understand. My father
has rheumatoid arthritis and we go through some of the same things.
So he is the only one. Half of my family has always thought I was
faking being sick because I did not physically look sick.
When I was younger, my mother (my parents are divorced & I lived
with her) would always get angry and yell at me when I was sick,
as if I was doing it to upset her life. I had 2 operations when
I was in high school (age 15 & 17) and I was made to feel guilty
because of them. Though that that I'm older (28), she is better
trying to understand. Note the word "trying", but I have to give
her some credit. I suffer from fibromyalgia, severe depression (bi-polar)
and panic disorder. Oh, and I have a very high stress job. So it
makes life interesting. Now I have a wonderful man who does his
best to help and understand me. He goes to the doctor's with me
and asks them what he can do to help me. I feel very greatful that
I found him.
My only worry is that he will go away, like so many of my "friends"
and the few other boyfriends I have had did. My psychologist says
that I need to learn to accept that I do have Lupus. It's been 14
years and I just don't want to, though I know I need to. I am going
to school to become a marine biologist. The doctors have all told
me to change my mind, but it is something I have wanted since I
was a little girl. So I will try to work in an aquarium. I still
get very angry when I get sick. I'm sure you all understand that.
I just can't (nor have I ever) been able to do the things other
people my age could do.
I suppose all we can do is hope that someone finds a better way
to help us or a cure. If anyone would like to contact me, please
feel free to do so. I don't really have anyone to talk to that understands,
so it would be a great help to me. My e-mail address is noras_shadow@yahoo.com."
 "Hi,
my name is Linda Tavernise. I am divorced and live by myself
in Greensboro, NC, USA. My handsome son, Paul, 31, lives with his
architect girlfriend, Jenny, and works as a web consultant in Boston.
(I recently gave him my medical power of attorney & our relationship
has never been better). I still work as a graphic designer creating
logos, brochures and P.R. material on my Mac for a major pharmaceutical
firm. I earned an MFA in painting from the University of North Carolina
in Greensboro in 1985 and have gallery connections throughout the
state of North Carolina. (You can view my paintings on www.GUILD.com.)
I am also an avid environmentalist and have been active for many
years on the board of a major state-wide organization, the Conservation
Council of North Carolina, one of the most active environmental
groups in the state. Wherever there is dirty air, water or pollution,
I am involved in protest! Every citizen should be guaranteed an
environment free of pollution with clean air & water. It's hard
enough to breathe with good air! Talk to someone with asthma.
I have had SLE since I was 30 years old, but started my auto-immune
history with myasthenia gravis at 23. (I am now 57). After the birth
of my son, I had a thymectomy which gradually diminished the myasthenia
symptoms over a period of 10 years, and then, lupus set in with
pleurisy 3 times in 1 winter. In each crisis I have managed to adapt
& deal with the situations given me: optical neuritis 3 times, pleurisy,
pain, arthritis, migraines, extreme fatigue, infections & surgery...but
lately I have been diagnosed with pulmonary fibrosis and am left
with only 40% lung capacity. This has really cramped my lifestyle.
I can't do all I used to do for what I believe in. I sure am glad
I have a career that involves sitting! I take prednisone, titrated
to my needs. Currently I am on chemotherapy: 1000mg cytoxan once
a month...for however long it takes to make any impact on the activity
of my immune system. I have to be on oxygen for anything slightly
aerobic.
To keep myself sane, I do yoga, see a wonderful therapist, have
3 cats, read and see as many friends as time will allow, and I hope
to gather more friends on this site! I have a generous, loving family
who has saved me from many financial disasters, not to mention the
hugs they give! I belong to the Unitarian Universalist Church whose
pastoral care program has kept me feeling loved. Painting is my
form of meditation...a power higher than myself is in charge when
I paint, not me.
I am looking for other people to talk to who have lupus AND pulmonary
complications and/or chemotherapy. I really need some idea about
what I am facing in the future. Is there anyone on this site who
has had similar problems? I know each person is unique, but we certainly
can share our experiences!
Please feel free to e-mail me : ltav@mindspring.com...I have a
lot of experience with loving & caring. I've been a Hospice volunteer
for 3 years and I have a broad shoulder!"
 "My
name is Linda Hess and I am 51 years old. I was diagnosed
at the ripe old age of 30, I was married to an alcoholic and had
two wonderful children, Tru was only 11 years old and my daughter
Tara ,who passed away May of 1999 at the age of 30 was only 10.
I was a Baltimore City Police Officer and when I started having
severe knee and joint pain it was hardly possible to do my job.
I was always an active person and I could not understand why my
energy level was so low. My daughter had Spinal Bifida and I never
really had time to pay attention to my symptom, but being the sun
worshiper I was I also could not understand why lying in the sun
made me feel so terrible, and I could not achieve the normal sun
tan that I had in previous years. Because my daughter had a wonderful
orththopedic named Dr. Edward Reahl, he knew my normal activities
and personality and was very concerned when I told him how I was
feeling. By now I could not get my clothes on in the morning without
the held of my son, I had already started experiencing numbness
in my right fingers and they would turn completely white then purple.
After two weeks in the hospital I was told in 1980 that I had SLE.
I had never even heard of it. The doctor who diagnosed me told me
I had to stay out of the sun, leave my job as a police officer and
where protective clothing all t he time. At the age of 30 I thought
he was nuts, I would rather have died then stayed in the house and
shiviled up. I was on prednosone for a few weeks and as vain as
I was I could not stand the weight gain. I decided to quite the
police force, leave my husband and reduce my stress level. I took
mega doses of plain old aspirin and made sure I was in bed every
night at a decent hour. Looking good has its drawbacks when you
are sick, hardly anyone except my sister thought I was ill. I use
to think thank God I don't look bad, but then you never got the
support you need. I use to think why me, and how me? I think I finally
found it out, but no one will listen to me. When my daughter had
a major operation in Boston, Mass, I brought her home and was told
she had to be kept in a sterile bedroom, all hospital equipment.
One day I put her bed pan and all the equipment in my bathroom,
put on the hot shower and poured bleach and ammonia together. To
this day I have no idea how long I laid on the floor in the hall
way, but it was two weeks later that I had my first flare up. It
was so bad that even my dog, who loved to sleep with me and weighted
only 5 lb. was sent away because if she moved on the bed it made
my body hurt. I really believe that the chemicals in cleaning products
could be a contributing factor to triggering this disease. Also,
I was one of the few persons who got Toxic Shock Syndrome a few
years earlier from using the tampons, Rely. At the age of 32 I had
to undergo a full hysterectomy. It has been many years since then,
I remarried and moved to the shore, Ocean City, Maryland. I write
a weekly column and only work part time. I know I have Lupus, even
though I never have any flare ups anymore. I do have terrible sinus
problems, I always ache in the evening, (you just get use to it),
my Raynauds is always occurring and my face is so red without makeup
that I look like I have sun burn at all times. I still love boating
and use a sun screen. I do believe that you get use to certain pains,
that the average person would be complaining about. Loosing my daughter
was about the worse thing to happen to me. I use to think all her
30 operations during the course of her lifetime was terrible, but
death is the worse thing for a Mom to face. I have had two major
bladder operations and I have shortness of breath whenever I walk
steps or run. I am one of the lucky ones, I am able to work, play
and enjoy life. I hope it remains that way, but as I get older and
read all the new literature on Lupus, I see small signs of this
horrible disease creeping up on me. Thanks for reading my story.
I am always here for anyone who wants to write to me about their
illness. LHess1790@aol.com."
"I'm Lorna Buenrostro.40,
wife & mother of 3 Beautiful children, I live in Baytown, Texas
for the past 23 yrs. I was dx S.L.E. 10 yrs. ago. Diagnosed by my
family physician ( surprising huh! ) Well during a fishing trip
I became severly nauseated & weak and couldn't place one foot in
front of the other my husband took me straight home per my request,
It was imparative for me to lay down after numerous attempts to
wake me failed,he loaded me up in the car and off to the DR's we
went, with the symptoms of sever joint stiffness and pain,muscle
pain nausea,light sensativity, the doc ran a few blood test and
gave me meds to help with the pain and stiffness, then spoke with
us on his suspisions about what we were most likley facing and on
our way home we went just as numb with what could be affecting me/
us. At the time I had a close friend with Lupus, which was both
a Blessing and a Curse. The blessing part was all the information
that was forthcomming by FRIEND as well as the compasion and a understanding
shoulder to cry on, Which was such a necessary part if I was to
get a GRIP on what was GRIPPED on me. Comming from a family background
that had no time for personal pity, was a attribute of sorts now
that I reflect back. It was time to get a stiff upper lip and step
forward. I armed my self with as much knowledge as I could get my
hands on first heading off to the library loaded down with books
pertaining to Lupus as I could carry, I was homeward bound to READ
!!!!! My thoughts were Knowledge is AMMUNITION !!!! and I find It
very necessary to load my self up, It sure helped the Helpless feeling
at the time. As it's been said ya learn something new everyday,
To date I've been diagnosed with SLE, Neuropathy , Sjogrens Syndroma
, Chronic Rhinits, I've been hospitalized for swelling on the Brain
which deterorated my short term memory,they show me a black spot
on the CT scan/MRI where the short term memory WAS and the for the
latest which is Heart damage , for which I'll need (2) Valves replaced.
As a lot of you have experienced numerous surgerys. The latest ones
being for Tendons that snapped like rubber bands, and polyps and
tumors springing up all over inside and out . It seems like what
the Lupus don't destroy the Dr's need to remove, Never a dull moment
HaHa!!! To explain the CURSE part of having a friend with LUPUS,
well, It scared to fire out of me to think I was going to end up
in such shape as she was 10 years ago was more than I could bare.My
mother also has Lupus (SLE & Discoid Lupus),My twin daughter has
developed rhuematory arthritis at the tender age of just 17. This
is truly a mothers Heartbreak She's on Celebrex now, I pray it's
not lupus, she's being tested. Through it all I''ve had the support
of a wonderful loving & caring man that Iv'e shared 23 years of
marriage with I will amit I don't know how he has stood me in my
crazy phases !! Feel free to e-mail me at Major369@aol.com
"My name is Porsche
Buchanan and I was diagnosed in 2000. I experienced symptoms at
the age of 15 , but they were dismissed by many doctors as being
rheumatoid arthritis. The symptoms kept worsening through the years,
with the notable development of extreme photosensitivity, kidney
pain and severe migraine headaches. In the summer of 2000, my life
nearly came to a standstill with overpowering fatigue, recurring
migraines, and swollen lymph nodes. After many yers of misdiagnoisis,
the culprit was found. I had been diagnosed with the same disease
as my grandmother had in 1976.
I am very determined to see a cure in my lifetime, since moments
without pain are fleeting and remission seems to get shorter each
time. I will not let this disease ruin my life, and ,with the help
of specialists,intend to live my life to the fullest. I am 28 years
old, and am pursuing my Bachelors degrees in Computer Science and
Civil Engineering at California State University, Northridge. I
plan to run my own engineering firm when I graduate next May and
lobby the United States Government for more money to find a cure.
I have been through it all!!!
If I can be of help or advise someone, please don't hesitate to
write me : bombshellter@hotmail.com
"I am 54, single, live
outside Bryan, Texas. I live on 180 acres with my 91 year old mother,
my son, daughter-in-law and grandson, 26 horses, two lovely white
donkeys, five dogs, and two cats. I work and garden. I was diagnosed
with "mixed connective tissue disease" in November of 1990 (I had
a positive ANA, anti-phospho-lipid .... and something else I can't
recall). My symptoms were joint pains and debilitating fatigue.
As with most of the ladies, in hindsight there were other symptoms
that cropped up every so often: I had early migraines, strange migratory
joint pains, "nervous stomach" problems, etc. And now I can rock
along for a while, seemingly OK - almost forgetting I have a problem
and then Wham -- it hits me! But I do tend to push the envelope
... and what makes it hard is that lupus, for the most part, is
not a disease that has an obvious outward appearance.
I've taken plaquenil since the onset - and I hate the stupid field
vision tests. I have prednisone on hand for flare-ups (which I'm
currently having now), and I have at times taken Sonata for sleeping,
Celexa, Neurontin (for fribromyalgia) ... sometimes I get intensely
interested in taking care of myself ... other times I think "gee,
it doesn't really matter in the long run, the flare-ups don't seem
to have any kind of pattern" and I stop driving myself crazy!
But I think this condition makes me independent minded ... and I
got the same sense about the rest of you from reading your bios.
Feel free to contact me at rbright@crai.com" Dede Bright
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