Personal stories 1
Personal stories 2
Personal stories 3
Personal stories 5
Personal stories 6
"My name is Kim Owen and I'm 18 years old. About
three months ago I was diagnosed with SLE. I went to the doctors
after I collapsed at college, but it was the proverbial last straw.
For months I had been feeling tired most of the time but I had most
of symptoms of flu - high temperature, achy joints, painful chest,
feeling cold most of the time and an aversion to sunlight - so my
family and I went overly worried.
Before the doctor told me that there was a chance that I could have
this disease, I had never heard of it, let alone know how severe
it could be. After then, though, I made up for my ignorance. I surfed
the net and looked in libraries, found out all about the disease
and the treatments and the like. And I happened upon this site.
Since then, the most important thing in my life has been my family
and the few close friends that I have told. I notified the college
that I would be back in within a week, but that turned into two,
due to tests. I was later, on the 7th of February, informed that,
yes, I did have the disease.
I had left it until then to tell my boyfriend, Andy. He was upset
and disbelieving, but since that day we have become closer. On Valentines
Day he took me for a romantic meal, in a posh resturant in town.
After dinner, he proposed. I said yes, and we are currently trying
to plan a wedding for the 12th of December - my birthday. Trying
is the most important word in that sentence, as my mother and sisters
are trying to plan it for me as they don't want me to become too
tired or stressed as this is known to course the flares that I have
read so much about.
All the other people here who have posted are all older than I,
but I know that this disease hits mainly at childbearing age. But
we all go through the same feelings and the same distressing times,
even though we all have our own way of dealing with things. I just
wish that there was more that the doctors could do for me - for
all of us really. To find a cure would be a lot to ask for, but
I think that if the right amount of time and money is spent than
one day there will be no need for liver transplants and the like.
I just thought that I would share my story, to prove to other teens
like myself that life does go on, and there is no need to stop living
a normal and healthy life."
"I have felt pain and
releaf hearing everyones storys. My name is Debbie I am 44 years
old married and we have a 17 tear old son his name is Luke. I was
diagnosed with lupus (sle) and autoimmune hepatitis about a year
ago. I went to the hospital E.R. I couldn't even pull my own pant
down. That happened two times, my doctor just kept doing blood work.
My liver count was really high it was never really normal again.
One day I asked my Dr. what he thought I had and what he was going
to do about finding out? His reply was compared to how I felt in
the hospital and I feel now... what do I want? I told him I knew
something was wrong and I would find out by my self. The thing I
also found out was that I had all of this comming on for at least
14 years. Yes it is a relief knowing I am not a nut case, or at
least not totaly. When our son was a baby I would be in so much
pain in my back I couldn't even turn over in bed I would pull my
self over with the mattress. I would try to pick my baby up and
couldn't even lift him with my hands, I would put my elbows under
his pits ond lift him. I had a lot of pain in my tummy and thought
it was my female organs, so I had a hysterectomy. God is my strength.
My husband is one of my many blessings."
"I recently have been
diagnosed with lupus in September/01 and have had symptoms since
I was 18 and about to give birth to my daughter.I've been fighting
for 6 years and just turned 25 on valentines day,and celebrated
an 7year anniversary. I've been very lucky my husband has been there
for me .He is the one who helped me find your web site.I thank god
every day for a good day . I 'M relived to know I'm not alone and
going insane.Sometimes I don't want my child to see me like this
and don't know how to get the extra support I need. My mother was
just diagnosed with stomach cancer and I'm her support for everything.
Chemo visits ,doctors appt, and moral support. My husband helps
me as much as he can.I can't even drive or walk to the liquor store
to get my little one an ice cream. This has been so hard. I can't
stand the sun it hurts my eye and gives me a migrane.I drive maybe
3 to 5 times a month. I take my mom if I can for her chemo if not
my ! husband drives.I have been waiting for an answer from social
security disability for an answer and hop to get it soon. I can'
t do this alone. I have bills to pay and I never thought I'd consider
doing this now to file so young but if I'm not able to control my
flares and have to ware hand braces to keep my hands for curling
and staying in use I don't know what else to do . I have had finger
splints made for my fingers because they are deforming at the knuckle
to the finger tip and hyper extend to hand. I just want to say that
I'm glad for people such as your self that keep us informed and
that you share your story. I applaud you and keep your head up your
not alone and if I can do deal with my mother illness and mine I
know you can because we are strong even by sharing or reading this
to heal our souls your the value in our lives and our homes.With
much respect to Joanne and whom ever reads this message. I live
in California and you can reach me at [email protected] thank
you."
" I was
finally, officially, diagnosed with systemic lupus erythematosus
in 1970 just before I turned 32 years of age. Married and the mother
of three children found me relieved to have a diagnosis that fit
how I had been feeling. Also, grateful for the prednisone that took
the pain away. My rheumatologist had interned at a hospital where
they were studying lupus. He is still my rheumatologist. We have
had our ups and downs over the past 32 years but we have both survived.
I was 10 years old and hospitalized for lumbar pneumonia in January.
In April, I then experienced a rash that was diagnosed as scarlet
fever. I have had joint pain, swollen glands, tiredness (my mother
said I was too young to be tired). But in all sincerity, in 1948
who knew. After I was married and I started seeing a new GP who
had a patient with lupus, but did not diagnose me. I suppose that
over the next 50 years I have acquired enough information to fill
a book. Here I am 63, and still breathing. I take Celebrex for the
OA, Paxil for depression, Darvocet-N-100 and Neurontin for pain,
and a mineral without iron supplement. Also, one Bayer aspirin,
daily, since I have had a quadruple bypass." Carol
"I live in southern
California and was diagnosed with SLE approx. 8 years ago. Same
old story, feeling terrible so you go to the doctor and are told
it's this and that or worse when you are told you probably need
a psychiatrist because they can find nothing wrong with you. Finally,
one astute MD noticed that I had a bad case of shingles on my leg
and off to the rheumatologist I went. I have really been very lucky,
as of this point I have had no kidney involvement, I have had pericarditis
once and my thyroid is virtually non functional. I have some fatigue
and sore joints. My biggest problem probably is my anemia and leukopenia
for which I have had a bone marrow biopsy (ouch). I continue to
work part time as a perinatal nurse and enjoy my family, which includes
six children who are all beginning to leave the nest." Joanne
"I was diagnosed with
lupus when I was 12 years old. I have experienced a lot of pain
and i have been through the ulcers, medication, shingles,arthiritis,
predinsone( as well as other medicines) the weight gain and the
fatigue. Theres more but I try to forget. I am e-mailing you to
let you know that despite all the pain and trials I have been through
my short lifetime, I am still trying my best to get through it.
I know that I am not alone in this world. My family and friends
encourage me to keep doing well in school ( although I miss time
often) This is my senior year and for the first marking period grades
I got 4 A's and 3 B's. I am interested in the health care field
, why not be :) I plan to become an RN, or Nurse practitioner. Right
now i am taking an LPN class at New Horizons Regional Education
Center. And I love it. I plan to study heriditar! y disorders like
lupus. This is one site, among many that I just found and i love
it. I plan to visit often. Thanx for making me feel welcome."
Ashley
"I am 43
years old, have four children aged 13-20 yrs. and a wonderful husband.
The Lupus symptoms have been around for some years but I had never
heard of this disease so didn't know to get tests done. When I have
gone to doctors about the pain and stiffness in my hands, it was
put down to arthritus. A couple years back I went to a doctor after
experiencing such confusion and 'brain fog', I got lost in our local
city - it was a scary thing!! I had blood tests done, he put it
down to ross river fever, depression, stress. (also had aching joints
and headaches for a while) A lot of things make sense now that I
have found this lupus site and read about the symptoms that can
be attributed to lupus. I don't like what I have but it is good
to know what it is. I am tired, exhausted most days and need to
rest every avo and to bed early every night. I thought this was
to do with the depression I have had for many years (have been on
anti-depressants for 8 years) but it is not only due to depression.
I am afraid of getting major flare ups - chronic pain and organ
troubles but I pray that God will get me through in His strength
if it comes to that. The pain at the moment is bearable although
consistent, it hurts to turn off stubborn taps, pull windows closed,
open cans, etc etc. I used to love to write letters but now I have
to take breaks - I love to talk on the phone, too but even that
hurts the hands if in the one position for a while. Such pain and
stiffness, but as I said, bearable - I am only taking panadol occassionally,
I guess I don't want to be addicted to major pain killers yet. Does
that make sense to anyone out there? If anyone would like to write
to me, my email address is [email protected]. I am looking at
stepping back from the work I have been doing - mostly voluntary
- and encouraging other able-bodied people to help. I can still
pray and plan to do more of that this year. God bless." Julie
"i just discovered it
today.I want to share my story with you all and i hope i can have
more information to help myself because i have suffered alot and
i want to live anormal life.I am now 33 and was diagnosed with lupus
13 years ago I live in Amman Jordan and i think i am lucky enough
to only have mild lupus I had an attac 6 years ago and since then
only the usual flares which are accompanied by jont pain, inflammation
and the neverending depressions.I am married and have two beautiful
children 6and5.Ever since the last attack i have been taking prednisone
regularly and on high doses 35,25.and i can never go under 12.5.
My body seems to have become addicted to cortisone.Now i take 20mgs
as well as plaquenil,and any antiinflammatory drug available on
the shelf , last one was celebrex but i stopped it because i was
afraid of its side-effects.I also discovered that i have osteoporosis
three years ago, no one told me to take calcium supplements with
cortisone ,anyway i am being treated for that too and feel fine.My
only problem is with the steroid treatment how can i reduce the
dose without any problems? I tried immuran but my doctor is scared
i might have problems with my wbcs.I have developed a sort of pleuritis
thing recently ,to be exact 2 months ago and that is why my doctor
increased the dose.I am only worried about the side effects, i have
developed atrophy in my legs and i wonder what next. We do not have
support groups in my country i am trying to establish one soon.I
sometimes feel that our doctors lack enough education and that is
why i think i was not treated properly, plus a husband who is unfortunately
tired of the continuous complaints.I am in this all alone I want
to help those less fortunate enough to know about their disease
and i would really appreciate any suggestions for my queries. Thanks
for your attention.Here's my e-mail for any suggestions [email protected]."
"My name is Deborah,
I am 31yrs old and live in Ireland. I am married to Brian for 9
yrs, and we have two lovely children, Kurt and Kirsty, aged 7 and
9. I was diagnosed with SLE one year ago, but like many of you I
feel I may have had it for much longer. In the weeks prior to being
diagnosed ( july-august of 2000) I was very debilitated, it started
out with pain and stiffness in my shoulders wrists and basically
all my joints. It then got to the stage where I couldn't walk or
sleep because i was in so much pain. my G.P said that I had a virus,
but I knew it was much worse than this because only I knew the extent
of the pain.I returned to my G.P for the second time and she still
insisted it was a virus and would go away, but I asked her if there
was a possibility it might be rheumatoid arthritis, and she totally
dismissed this. Eventually I was admitted to hospital, where several
tests were carried out and I was diagnosed with rheum. arthritis.
I was put on a course of steroids, arthrotec, painkillers, pariet-(
to prevent me from getting a tummy ulcer). I was then referred to
a rheumatolagist and he did more tests and found out that I had
in fact SLE. The symptoms I have had in the past have been severe
joint pain, pain in my rib cage all the time, a prolonged sore throat,
hair loss and tiredness. Presently the joint pain has diminished
since I started Plaquenil 10 months ago, I still have the hair loss
and am currently wearing a wig, but overall I am alot better than
I was 11 months ago, even though I do feel down a lot, I was once
considered to be a pretty lady and with all I've been through in
the past year, I look in the mirror and feel I've turned into an
ogre, but when I'm feeling low like this I look at my two children
and my husband who has been absolutely brilliant and I'm glad that
I'm still here. I think its great to have this page to be able to
read about other people with Lupus and what they have been through,
and hope all of you have a long and happy life."
" My name is Nallely,
I am 19 years old and was diagnosed with lupus in Jan.of 2001. It
all started when the bones in my hands started hurting very bad
to the point where I could'nt brush my hair. I started becoming
very week and tired. I also got ulcers in my mouth. At first I thought
it was noyhing and that I would get better in no time, but I was
wrong. I was a 12th grader in High School which was supposed to
be one of my best years, but it was not. I started missing a lot
of school because I did'nt have the energy to get up and go to school.
I went to a doctor who told me I was only anemic and started taking
a lot of iron pills which did not work for me. I got to a point
where I could barely walk because I was sick. I then went to the
hospital to get checked. I was ther for about 15 days where I got
a lot of test done and a blood transfer.. This is when I was told
I had lupus. I was overload! ed with IV and had my feet and back
swollen to the point where I could not walk. I thought that the
swelling would go away by itself , but it did'nt. This is was caused
my second flare. I was back in the hospital because I could not
breath. This time I was injected with something to take the water
out. I was extremely determined to get out of the hospital as soon
as possible but the doctors did not know how to treat me and I got
worse. I was then transferred to another hospital where I got much
better, thanks to all of those doctors and nurses at UCLA Harbor.
iI lost about 40 pounds and lost all of my hair because I went through
quemo. I cried so much because I was so ugly now. My skin wsa all
burned also because of quemo. and I got the most ugly strech marks
all over my legs and stomach. I prayed a lot to my god so I could
get through this and so far I have. I was on a high dosage of prednisone
and now it is cutting down. I honestly don't have a lot of faith
in medication. I ! started to drik a juice called NONI which helped
me a lot because it is natura. I also started taking Nutrilite vitamins
which helped me even more . I have been out of the hospital for
about 6 months ago and I am doing so going , I am really thankful.
I have read a lot of the stories and I felt like crying because
I want to share my wellness with all of the lupies. I really hope
that I can help if you think you can trust what I am writting and
taking. I never stopped taking my medication, I only added some
natural vitamins that have helped me a lot. Please write to me at
[email protected] if you need a friend or are interested in
learning more about what I used to get better and feel better. God
Bless you all."
""Hello folks!" My name
is Melane and I am 26 years old and was diagnosed with Lupus SLE
when I was 13 years old. I had 11 years with no problems and thought
it was a miss diagnosis not wanting to live wearing sun tan lotion
and miss laying in the sun with friends. Well 2 years ago my symptoms
of joint pain started again. So I went to the doctor for a check
up and he stated you are fine. Well I was not the pain over that
year kept getting worse and worse I could barely go to work or do
my job. Went to the doctor again gave me some pills no lab work
and sent me on my way. Well my knee this year 2001 had so much fluid
build up I went in and thats when the doctor a( different one) ran
lab work and found out my blood levels were so elevated he put me
on Predinisone now for 2 months I feel like a new person minus the
tiredness but no pain. Thank god. I forgot to say that the doctor
did try getting me off the pills but it didn't work the pain came
back so i am back on it no! ! w till my next doctor visit. The we
will see what happens. The only thing bad in Minnesota is the insurance
company's. My husband was layed off from his job and so we lost
our medical and in Minnesota to get insurance threw the state you
have to go 4 months with no insurance so I have 4 months plus back
3 months in medical bill to pay and at the best time when I'm having
trouble. Nice state I live in!! I have a daughter who is 6 years
old and I pray she does not get this disease the say she won't but
I don't know how they can say this? Email if you would like to talk.
[email protected]"
"My name is Robbie Fetters,
I am from Macon, Georgia and was diagnosed with Lupus over a year
ago. Before that I was diagnosed with Rheumatoid Arthritis. I just
got realeased from the hospital today, July 4th. I have Lupus Pnuemonitis
and Chronic Interstitial Lung Disease. They gave me a three day
1000mg. of Solu Medrol Iv for three consecutive days. I am on a
nebulizer four times a day at home. I am currently under the care
of the most wonderful Rheumatologist and Pulmonary Specialist. I
also have Osteonecrosis in both my ankles. I am a General Sales
Manager of three radio stations but have had to be out of work since
June 12 and was just told by my two docs that I must be out of work
at least another one month to three months and maybe forever. I
love working and this is very hard for me but my pulmonary doc has
told me that the lung involvment is very serious and that my diffusion
is 42 and is should be 80. He says we have to treat it very aggressively
right now and that he cannot assure me that it will be a favorable
outcome. I am a very positive upbeat person and I know that with
a positive attitude and my faith in God that alot can be overcome.
I will not ever give up the fight and I will strive to get back
to work. I am 48 years old have a wonderful husband of two years,
two children ages 25 (a nursing student at Emory University in Atlanta)
and a 19 year old married son. Two wonderful step-children ages
9 and 5. My Rheumatologist has become a very dear friend, she prays
with me and is an awesome person. I am so fortunate because I talk
to people everyday who do not have open, compassionate, knowledgeable
doctors. I also have a fabulous primary care physician who hooked
me up with all my great specialist. I will say the lung involvment
has taken a toll. In the past I have had severe joint pain and muscle
pain and eye problems but my major organs were not affected. My
liver enzymes are always out of whack and my breathing is very labored
especially with any exertion. The one thing I don't want to project
is doom and gloom though. God has brought me through alot of things
in my life and this too is one more thing. Whatever the outcome
I am a truly blessed person in so many ways. I wish for everyone
out there suffering with Lupus peace and rest."
"I was diagnosed with SLE in 1982 at the age of 21
after spending several days sunbathing and developing flu-like symptoms
and a body rash including the butterfly rash. I saw my GP immediately
and he diagnosed me with SLE at that time, so I didn't have to go
through years of struggling with a diagnosis. I'm thankful. I was
hospitalized with a severe lupus flare with painful joints, enlarged
spleen, hepatitis, high fever, extremely high white count. I had
several flares over the next few years and was hospitalized several
times. In 1985, my health began to stabilize. Except for fatigue
and joint pain, I've had no major flare-ups since. In 1990, I developed
a throid problem and have taken medication for it since then. In
1997 and 1998 I had two miscarriages. We've given up on pregnancies
since I had many complications with the last miscarriage however,
we plan to adopt, so I feel very positive about it. I take good
care of myself and get plenty of sleep and rest. It's been 17 years
since I was diagnosed I'm now 38 and I have a lot to be thankful
for. Lupus can be tough but so can life without Lupus. I have a
wonderful husband, family and friends. One question, "Does anyone
out there have severe allergies and/or has anyone been on allergy
shots?" If so, please share your experiences."
"Hello. My
name is Stacy Myers. I am 17 years old. I was diagnosed Dec.13,
1996. I had been having syptoms since Oct. of that year, just shortly
after my 14th birthday. I had only mild joint pain, and I was doing
well for quite sometime, but then in the fall of 1998 I had such
severe spinal pain that I was taken out of school for two months.
During this time I became greatly depressed. At one point I was
suicidal. I didn't want to talk with my friends or family about
it for fear of worrying or upseting them, but then one day God reached
out to me. I was watching tv and a well known performer began talking
about how his sister had just died from lupus, and he had created
a lupus fund in her name. He said that he hoped that no family would
ever have to suffer the loss that he and his family had. It completely
changed my attitude. Thanks to my new mental outlook I began feeling
much better. In early December I went to Columbus OH to Children's
Hospital to see a "very prominent" rheumetologist, who ended up
accusing me and my mother (who is an RN) of not knowing the difference
between a lupus rash and acne, and then incinuated that I was just
trying to get out of school. I am a very dilligent student and have
never once been off of the honor roll. He then re-did the lupus
testst saying that there was the possibility that I had been misdiagnosed.
I left with new hope. Later, Dec. 13, 1999, His office called and
said that all of the lupus test had come back negative. I had this
ray of light in front of me and I could not force myself to believe
that there was the chance that it wasn't true. My mom tried to tell
me that it may just be in remission, but I wouldn't hear of it.
The dr. finally called about a week later to tell me that I did
have lupus, it was just in remission, and that I had something else
on top of it. He ordered and MRI in Feb., 1999, and to date he still
has not called to give us results, but mom called and had a lab
technician tell her the results, which showed nothing. I feel that
it had gone into remission before he ran the tests, but since I
don't have a ph.d. what I think doesn't matter. At any rate, I have
been doing so much better. I have decided to write a book about
being a teen with lupus, in the hopes that it may help others. I
hope to include the stories of other teens in it as well. I have
found in my life that you can take nothing for granted. Life is
a gift that should be enjoyed to the fullest, and you should never
be afraid of anything, because fear is a waste of energy. Don't
put up with people who don't have your best interest at heart. And
never forget to smile. It can brighten up anyones day and most people
are eager to return the favor. Take care everyone, and if anyone
would like to talk please e-mail me at [email protected]. Love ya!
Stacy :)"
"I just found
this "site" and I'm touched by all the stories that are printed.
I do not have Lupus and I do hope that I never will get it. My heart
goes out to all of you and I pray to God to keep you well and to
help you and your loved ones go through the battle of this illness
with love, understanding, support and courage. 10 days ago, I lost
my nephew to lupus. Neither myself nor our whole family knew what
this desease was all about. My nephew even though he had been diagnosed
with lupus at age 16, he never did led on to any family member of
his suffering. His kidneys failed him 4 years ago and was on dialysis
3 times a week. Approximately 7 weeks ago he was admitted in the
hospital with severe abdominal pains. George underwent numerous
tests and 2 weeks before he died he was scheduled for heart surgery.
He gave the impression to all family members that this surgery will
help him become a new man and also place him in the list for kidney
transplant. The operation was performed and unfortunately, my George
never came out of the operation room. I cannot forgive myself for
not knowing about this desease. I need to know how it is contacted
and what symptoms to look for should any other family member or
myself ever get this. George's sister has very bad arthritis, does
this mean she has it too? Please help me understand this. George
had been given 2 weeks to live and yet to his last day in this world,
he was with a smile, a joke and such an enthusiasm for life and
future. I have never known such a brave and positive person reading
your stories, I see that all of you are as brave and positive as
he was. From the bottom of my heart, I wish you well and may God
be with you. / Ifigenia"
"I'm glad I
found this site. After listening to myself at the doctors office
recently, I thought myself that I must be crazy. How can someone
feel that bad and have that many problems at once. I am a nurse
and tend to downplay most symptoms. The fatigue and joint pain are
the worst. I used to be so active, but now an hour after getting
up, I'm ready for a nap. I was told over a year ago that my lab
work came back "borderline". I was told not to worry about it. I
was a good patient. I didn't worry about it until I was almost non-functioning.
My husband looked at me one day and asked, "What's the matter with
you?" I made another doctor appt. that day. Why is it that so many
of us are treated as if we are crazy? Anyway, I'm glad I found others
who understand. Thank-you. RG"
"I am a college
student who was in search for information for my upcoming paper.
My mother suffers from Lupus and I know all of her struggles she
goes through every day. There is not a day that goes by though,
that she doesn't continue to do her very best in all that she does.
I guess reading some of these stories puts a whole new meaning in
the eyes of others. Keep fighting and have faith. :-)"
"Hello,
i have had lupus for 7 years and i always have had a bad rash people
look at me very funny because it is very noticable on my face and
arms i get embrassed and i shy away from people because of it, i
have tried makeup to cover it up but it seems to make it look worse.
I sleep to much is what my family says get out and do something
you might feel better ya right i just feel more tired. and as for
my children i get very depressed in the summer because i can't do
what most mom's do like go out in the sun and play with them . i
am very glad that there is other people to talk with about my problems.
people how can relate thanks"
"I am a
44 year old male and I started this adventure with Thrombocytopenia,
had my spleen removed, and have extreme joint pain, possibly RA,
butterfly face rash, extreme muscle spasms, and have been refractory
to most medications my Rheumatologist has tried. I have experienced
adverse drug reactions since this started. I took one dose of penicillin
after dental work, and had an anaphylactic reaction, have had penicillin
many times in the past. My Rheumatologist started a regimen of Imuran
for autoimmune hepatitis in November 99, and I ended up in the hospital
for a week with drug fever. I am experiencing allergic reactions
to all medications that my Rheumatologist is prescribing. Since
the hospitalization in November I have been experiencing cycles
of high fever 105+ lasting about 7 days, then "cooling off" for
2 days, then repeating the cycle. My Rheumatologist says she doesn't
know whats causing the fever and doesn't know how to treat it! They
suspect it may be ! "my" disease, which to this date has not been
diagnosed. Possibly Lupus, possibly Still's disease(junvenile form
of RA). My Hematologist disagrees with the Rheumatologist and says
I don't have Lupus and never will because you must have the genetic
markers for get the disease, which he claims through blood tests
that I do not possess the genetic makeup. This can be so frustrating,
to here two specialists with such contradicting conclusions. My
history is as follows I am a printer by trade, and bath in products
based with Benzenes and Xylenes, I had many days where I would get
so sick from the chemical exposure, flu like symptoms, headaches,
nausea and after leaving the shop for the day my symptoms would
subside, only to surface again the next day, after working with
these chemicals for a couple of hours. My Rheumatologist says the
potential for chemical exposure to trigger this disease is probable.
This exposure was over a 10 year period of time, and my symptoms
started about a year before I sought a medical specialist. I had
been in and out of my GP office many times with the flu like symptoms
and nose bleeds, only to be told I must be getting old and my blood
must be thinning and I bruise easily. Subsequently, my story starts
with the Thrombocytopenia as started in my story. Primarily the
incidence for Lupus diagnosis is by far more common in females than
in males, I am looking for information on chemically induced Lupus,
or Chemical triggers that can cause Lupus. Are there any guys or
gals out there with a similar story? My research has just begun,
and am gratefull for any information that anyone can post on this
forum that would help educate myself and any others that may be
interested. Thanks to all of you."
"I myself
do not suffer from Lupus....but my best friend and roommate does.
I always new it was hard for her...but never really knew how hard
as she always kept a brave face and enjoyed life like any of the
rest of us.....until recently that is. Now I am terrified for her.
Just before Christmas she spent a while in hospital.....I visited
her almost everyday but it was so upsetting.This is why I am writing
this.....I suppose to get it off my mind. She is only 20 and was
lying in that hospital bed barely able to move and certainly unable
to make conversation to us. Nothing that came out of her mouth made
sense to us....and I know her very well. I am still not quite sure
whether she knows what she said in that hospital...but some of the
things said were just so out of line. Doctors said it was the steroid
therapy that she was on...but she refused to believe them. Now just
2 weeks later she is perfectly fine and acts normal around everyone
except myself and her parents. I am not sure if this makes sense
to anyone...but it helps me to say it all..... This girl is one
of my very best friends and without her I don't think I could survive....We
have been through alot together and I just hope that she gets better
as she has so much going for her and the rest of her life ahead
of her. Now I realise what a hard time she has been hiding all these
years but up to this she seemed so healthy....I just wish for her
to feel better soon so we can once again enjoy ourselves.......and
I wish all who come to this site the very best for the years to
come. Sorry if this did not make sense...:) "
"I am a 37
yr. old wife and mom. I was diagnosed with lupus about 1 1/2 yrs.
ago, and, like many of you, it was a loooong process to finally
get diagnosed. We're a military family, and I wish I had a nickel
for every time I was told it was either a virus or stress-no matter
what the symptoms. Finally, I ended up at Johns Hopkins, and the
diagnosis came pretty quickly, especially when I ended up with scleritis/iritis
of my eyes. I have been doing much better since this last june,
only on Plaquenil, but when the disease rears it's ugly head, it
can cause the joint pain, dizziness, Sjogren's syndrome(that's daily),
chest pain, fatique, and the burning sensation with or without redness.
As a matter of fact, I don't get the traditional lupus rash, though
during flares, I'll look like I am blushing sometimes. There are
the long litany of other symptoms, and I am not in remission, but
life has been a heap better. I'd like to pen-pal with other women
in the same boat. Pep-talk each other, problem solve, and empathize.
Anyone out there want to talk? Lori: [email protected] Hope to
hear from you."
"First I would
like to say thank you to all of those who have provided such information
about a disease I know nothing about. My eyes have been opened,
and I can not adequately express my gratitude.
I am a 20 year old female in college. I am searching
the internet at 3 am because I am suffering from insomnia, which
mysteriously reappeared in my life a week ago, when I started taking
oral contraceptives again. I had been on the pill for three years,
after doctors failed to find any other method of treatment for my
migraines. I began getting severe migraines in high school (1 every
2 weeks) after being date raped. Over the last four years, every
since the rape, I have experienced periods of depression, asthma,
allergies, fatique, frequent migraines, hip and knee pain. My doctors
have always diagnosed it as depression and post traumatic stress
syndrome, but now I have hope. You see, the last seven days of my
life have been an emotional roller coaster coupled with fatigue,
rashes, several strange sores/moles, and mental instability. I thought
I was "relapsing" into depression, as a result of the rape. I have
been quite disappointed in myself, as I thought I had dealt with
the incident in a positive manner. Now that I have searched this
website, I feel that my symptoms may have something to do with the
pill, and not my psyche. The relief is enormous. Although reading
about lupus has put a new fear in me, I hear the sound of hope and
positive thinking in many of your messages. I guess I would like
to say thank you again. I wish you all well and better health."
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