Personal stories 1
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"I'm 27 yrs. old and a wife and a mother of two wonderful boys
ages 4 and 7. I was diagnosed with lupus�1 year ago. I still
don't�have a good�understanding of it. But, I feel that
this a start for me to understand and to know that I am not alone
in this battle for a new hope on this lupus. I to have a hard time
with stress, depression, joint pain, fatigue, etc. Right now they
have me on is plaquenil, but I also take alot of other medication
for it to for the swelling in my body. I'm not in remission and
I hope for the better. I go to U of M in michigan to see my doc's,
but they seem to be just as confused as me. I try to keep a smile
on my face everyday but I realized that it can be very hard at
times, but I manage to get by. My husband is in the military and
he is stationed in korea right now�and will soon be coming
home. He is such a great and loving person (father. too)�and
I can't ask for nothing�more. He has help me in alot of ways
that! he has no idea of what he has done for me, and I love him
for that. So I hope everyone that is out there, feeling the way
I feel to remember that God has a plan for us and he will not let
us down. Thank you for reading my story." Marsha
"My name is Andrea Kelley and I'm 50 years old. �I have
had Lupus since I was 14, 36 years.� Back then when I was
diagnosed even less people knew what it was.� I've had to
put up with a lot of negative people since that time.� Even
friends and family had a hard time believing�I were really
sick.� I couldn't talk about it because no one believed�me
and if�they did they thought�I was�just looking
for attention.� I still deal with this today, so you can imagine
how angry it makes me.� But, all in all I have an excellent
attitude and enjoy being alive and try very hard to not let this
illness control my live. Which is not always easy.
��� When
I was first diagnosed I was getting headaches and had� several
bouts of Pneumonia. Then one year later I had Pericarditis and
joint problems.� Which lead to
Nephritis and kidney disease by the time I was 19. Steroids were
used at that time and� they helped a little.�I've been
on them for 31 years.
��� For the next 15 years
I went in and out of the hospital for Nephritis and every other
weird aliment you can think of.
��� I was told I
should never have children but in my heart I knew anything can
happen.� When I was 34 years
old I gave birth to my daughter Marjorie.� It was clearly
a miracle. It really messed up my kidneys and my doctor� wanted
to try Cytoxin chemotherapy for two years, (loved that).� I
was in collage at the time getting my teaching degree.� After
one year of teaching a developed Gout while on summer vacation.
My doctor gave me Alpurinal and I got Steven's Johnson's Syndrome
from the drug reaction.��I had 2nd degree burns inside
and outside of�my body.�My skin peeled off,��I
lost�my nails and�I almost lost my eye sight. I made
it thorough that but I have eye problems and my mouth is hard to
open. I finished out the year and was let go by the school.
��� I
taught for 5 more years remarried and 4 months later had a heart
attack.� This past June I had a Pericardictomy
and two by-passes.� I'm in the third stages of Gout and I
have trouble walking.� Even though�I lose a little everytime
I get sick I was always able to bounce back.� I just haven't
been able to this time. If I can help anyone just let me know.
��� And
that is my story!!"
"Hello, my name is Thressa. I am fifty
years old but have battled autoimmune disease for at least
20 years. I was first diagnosed with attachment arthritis after
my daughter was born. It was a relief to know what I was feeling
was real. About five years ago I had an increase in fatigue,
flu like symptoms, and weird skin rashes. In addition I started
having extreme cold in my feet. My dentist, not Rheumatologist
diagnosed Sjogren’s syndrome. I have had a positive ANA
test, anemia that doesn”t respond to iron supplements,
and most recently MRI indicated I have had a series of “mini
strokes”. I also have Raynaud”s and several discoid
like sores. Yet my Rheumatologist will not call it lupus. Some
days I feel like I am walking through water knee deep every
step I take. I take celebrex, plaquenil, methotrexate, minocycline,
norpramin , darvocet, folic acid, and two heart medications.
And I have sleep problems which have acerbated since I started
working third shift. I think every joint in my body has some
type of arthritis but god �forbid the doctor should call
it lupus. He says I have “autoimmune disease of no specifity
awaiting further tests. I also get migraine headaches and have
to fight depression constantly. Yet with God all things are
possible so add my name to your prayer lists as I need all
the help I can get to continue to work and enjoy my two wonderful
grandchildren, Adam and Trey. �This is a puzzling disease
and gets little understanding and sympathy from the public
as we don’t usually look sick. I heard one lady at the
doctors office ask if I would really
want �to look like I feel. A very loud NO God
bless you all. Validation really helps Thressa. In Va.."
"Hi I am 28 years old and have had the symptoms of lupus for about
5 years.�
I was dignosed about 1 year ago while I pregnant with my first
child.� My
symtoms started 5 years ago on a visit to the ER.� I had sever
abdominal
pain.� They did all the blood and urine tests and found that
the protine in
my urine was very high.� The DR told me to see my DR as soon
as possible. I
did, and nothing was really found or the DR didn't make a big issue
of it.�
At that time I had alot of tust in DR's and went along thinking
it wasnt a
big issue.
Then about 1 year later I was stating feel tired alot I would come
home
after work and go straight to bed.� My boyfriend (husband now)� was
getting
worried I was sleeping up to 14 hours a day and I was still tired, and then
I started to notice swelling in my face, hands and legs and it prgressivly
got worse.� I went to a new DR and of course they found the high protine
again.� The DR did some tests and found that my kidneys were the culprit.��
They were leeking protine into my urine and my tisse which was causing the
adema (swelling). At this time I was sent to have a kidney biopsy.� And
still all they could tell me was that my kidneys were leeking protine. They
couldnt tell me why.
Then abot 6 months after that I found that my throyed was under active.� So
I was put on thyroid pills. And I find out now that they had me on all the
drugs that they would put someone on if they had lupus, but never said one
word to me about it or what it was.�� So I went 3 years on all the
meds.��
eventually just being on the meds every day were getting draning.
well then I moved and got a new DR.� I went to see him to get a presription
for my meds and in that visit he told me that I was on all the meds for some
one who had Lupus??? I was in shalk.� I didnt know that was the problem.� He
sent me for some tests they all come back negitive for lupus.� Finally after
a year of testing he found something.� And he sent me to a specialist who
confirmed I had lupus.� I was 4 months pregnant.� I was never so scared
in
all my life. they told me that it was possible for me to lose the baby due
tio some antibody. The DR did all the tests and thank GOD I was not
carrieing that antibodie.
I had a very long pregnancy, the first few months were great!!!!� But by
my
7th month I was having some majour problems.� High blood pressure, severe
swelling in my legs to the point that I could not walk, or even open my eyes
some days cause my face was so swollen.� They wanted to take him out but
to
enduce labour they have to give you more fluid and the same with a
c-section. I couldn't handle anymore fluid. so I was admitted to the
hospital on bed rest for the rest of my prgnancy.� Eventually my swelling
went down enough for the DR'S to do a C-section.� And I had a beautiful
baby
boy!!!!!
After my pregnancy all my symtoms went into remission.� I was feeling GREAT.� Now it seems 9 months after his birth,� I
am getting joint, and muscle pain very bad.
Well that is my story.� I pray for all the lupus patients."
"How do I look? I hope we win our basketball game.
These are the things that I used to worry about until Lupus entered
my life. My name is Scott and I am a 19 year old MALE who was diagnosed
with Lupus two years ago to the day.
My mom moved to the Hawaii when I was a freshmen in high school
and I decided to move their because, hey, it's Hawaii. After three
awesome years in high school playing basketball and baseball I was
ready to graduate from Konawaena High school and enjoy my senior
year. At the time I cherished the sun and the beach; how could I
not, I was in Hawaii. As I began my senior year I was playing basketball
for my high school, working, going to school, and still finding
the energy to hang out and party with my friends. I started feeling
extremely tired, sore, and sick during the second month of my senior
year. As my basketball physical appointment came around I feared
that I would not pass it. I loved basketball and figured that I
was merely sore and tired from work and school. I lied my way through
the physical and began to play basketball. My dream was to lead
my varsity team to the state championship and play basketball in
college. However, during my first practice I wondered why everybody
else seemed so in shape and I was out of shape. My legs felt like
tree trunks and I threw up during our first run session. My mom
was "sick" of my feeling sick and dragged me to the hospital.
At first they said that I had mononucleosis and needed at least
two weeks of rest. I was sad, but figured that I would be right
back on the court. Two weeks, one month, two months, - things were
not getting better. Finally, my family and friends were getting
scared. I was sent to San Diego to see my father and the professional
medical center at Kaiser Permanente. They eventually diagnosed me
with Lupus. At first I was stoked because I did not have cancer,
aids, or any of the other life threatening diseases. But eventually
I to became depressed. The things I used to love doing all the time
were now limiting activities. Conversely though I began to appreciate
every aspect of life and I grew spiritually as a person. I never
judge people anymore because you never really know what somebody
has gone through. I thank god that I am alive and thank all of my
extrodinary friends who supported me throught my ordeal. But most
of all, I now have a eternal love with my family that goes deep
into my heart and will last forever. I now feel better than ever
and I'm only on 5mg prednisone a day. In addition I take 4 cell
cept and 2 plaquenil a day. I now have fell in love with swimming,
drawing, and life itself. I attend Palomar College and work a Albertsons
video department. E- mail me at [email protected]."
"I was diagnosed with Lupus August 2004, I was diagnosed with
Lupus after I joined the United States Army. I joined the military
for many reasons but particularly for the love of another, I thought
to myself I was a young 18 year old healthy young man who can handle
anything I was thrown at. I am currently 19 and stationed in korea.
I realized that during my training in Boot Camp I was feeling a
bit diffrent I thought nothing of it except the stress of the training
itself, I took pain medication and continued on, It was only when
I reached my station of Job Training that within 6 months the symptoms
got worse and worse and as the symptoms got worse I would Increase
the amount of medication I took to deal with it, as being i the
militray anything that slows you down makes you a target, and thats
exactly what happened things got really bad one day I decided to
head to visit one of the military doctors who thought I was making
the whole situation up they gave me some Pain medication and sent
me on my way I too thought It was all in my head I completed my
training only after much ridicule from my peers, i reached my first
duty station Being Korea and realized that though I still didnt
feel well It would just go away like it usually occured it came
and left, the swelling, stiffness, fatigue, I being hard headed
myself decided that ill deal with this as I usually deal with things,
by myself, a young teenage way of looking at things but I realized
I needed to seek help after I couldnt perform one my soldierly duties
which significantly hurt my self esteem and pride I knew something
more was wrong and I needed to seek help, Now with constant pressure
from my familiy i realized the end result was Lupus, and I am currently
trying to find out as much info as i can to stay in the military
even with my disease, I suppose I am not trying to make myself a
special cause or anything I would just like to pint out that I not
only sympathize with everyone who has this disease but I understand
the troubles it brings I have noticed a sharp decline in my social
activity with my lupus flares which has led me to be a more solitude
person even the person for whom I joined the military for has decided
that it wasnt a good idea to stay together, I suppose true love
isnt alway true lol! Well I hope my story may be of some use Great
site very informative for me Thank you! Ken"
"My name is Victoria, and am 40 years old. I was diagnosed
with lupus 15 years ago. I have been very fortunate to give birth
to 4 healthy wonderful children. I made it a point to deny that
I have a chronic decease. I proudly went on doing more than even
a healthy person should. There was no way I would let my children
or my husband know how tired I was. Well, past June I started to
have blinding headaches and dizzy spells. On July 28 my husband
took me to the emergency room, and I told the doctors about my illness
as well as APLA that came as a part of lupus. I had an MRI that
was read as normal by the radiologist, and was told that I have
vertigo. Next week I was hospitalized again for the same problem.
After staying in the hospital for 5 days the new diagnosis was anxiety
and In went home with a number of pills, but no answer. I flew to
visit my son in Israel a week later, thinking that my anxiety will
subside after I spent time with him. A week later I suffered a stroke
in Israel. With no insurance there I ended up in the hospital where
finally the radiologist told me that it was a second stroke. The
first was back home, and the doctors misread the MRI. Now am on
blood thinners, steroids, Neurontin, Baclofen, and the list goes
on. My right side is numb, and the spasms are very severe. My life
will never be the same, but I thank G-d for every day with my family.
My story should tell all of you that the doctors are not always
right. If you believe that there has been a mistake go for a second
opinion. Do not be afraid to ask, because yo deserve it. It is a
vicious disease that afflicts us for no reason. Please, be aware
that there are many doctors that are just nor aware of all the complications
that lupus causes, and yo have to be your own advocate. Be well,
and G-d bless."
Hi! My name is Ornella and I am 55. I was diagnosed with Lupus
(DLE) in November 2003 after a biopsy on my face and back. I had
only one small, scaly, red lesion in my cheek and others in the
neck. Illness began almost years before (6-7??) in my back and that
time I was on EVISTA because of menopause. On the net I have read
something about it: extrogen and testosterone enhance and reduce
antibody production. High stress may provoke LUPUS, too. I didn't
feel bad, only sometimes tired, stressed or depressed. After the
biopsy and blood tests the dermatologist cured me only with Plaquenil
but the rash continued to cause itching, so I went to an immunologist
who gave me corticosteroids for 5 months, I was loosing hair, but
the rash on
my cheek and neck disappeared. After a month I was fatter and fatter,
so I stopped the treatment.
I refused it and became depressed. I went to a Homeopath who reassured
me and confirmed that it is not possible to get corticosteroids
for such a long period. He gave me homeopath pills.
Traditional medicine does not approve this kind of treatment and
I dont know if it really cures LUPUS.
I am going to repeat blood analysis and I Will compare the exams.
I feel rather good (my back hurts and I must avoid the sun), I am
only fatter than before.
I am worried about LUPUS and our family doctor wants me to go on
corticosteroids otherwise I might be on a dialysis machine. I dont
want to feel like a diseased person and I am always busy with my
work, family and crafts. On the other hand my brain thinks?.
All happened with EVISTA! I was really touched by the stories I
read on the net about people affected by LUPUS. We will get through
it if God helps us.
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