Personal stories 1
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Personal stories 6
"I am 52 yrs old and have had SLE for 11 yrs, diagnosed after
my son's birth. Initially, the disease manifested itself as nephritis
and nephrotic syndrome. My kidney biopsy showed mesangial nephritis
and it responded well to steroids. Since then I have been on oral
prednisone no less than 20 Mg. I;ve tried just about every immune
supressant, the latest Imuran which doesn't seem to control my flares
which occurr about every 4-6 months. I did try an experimental drug
trial CD4 ligands at UCLA and felt better on it but developed Enterococcal
Sepsis and almost died. My Rheumatologist, a woman, is very understanding,
she's going to try me on Cellcept a new drug for transplant patients,
a strong immune suppressor. I hope it works and allows me to wean
low or off the Prednisone. I am starting to show changes in my hip,
which could be avascular necrosis so I would love to be rid of Prednisone.
Last summer I developed shingles and 6 months later myelitis. Since
then I have had flares which CNS symptoms including myelitis, extreme
weakness and paresthesias in my legs. I've worked part time since
my diagnosis and would like to continue working but don't know if
this will be possible with these new developments. I'm praying and
hoping for the best. It's very difficult to deal with a diagnosis
of Lupus, so unpredictable. My 13 yr old son and husband have gone
through a lot with me and I am so thankful for their love and support.
I pray daily for a cure for this devastating disease and the strength
to get through every day the best I can. Thanks so much for allowing
me to share my story with you all."
"Hello,
I am new to this site and I wanted to come and share my story with
you all. My name is Brittny and I am 23 yrs. old. I was diagnosed
with Lupus 5yrs ago. I was 15 when signs started to appear. At 15
I never thought that I would become sick, I was living a great life
and knew I had the world ahead of me to enjoy. I was a freshmen
in high school looking to make it on the varsity basketball team
in hopes that I could fulfill part of my dream. I hope to go through
high school and succeed at basketball and make it my life but then
in a single second it was all taken away from me. I was at tryouts
and we had to run, so I started to run around the gym like everyone
else, but I could tell something was different about me but I didn't
know what. From I was told I was running around the gym and passed
out. I don't remember an of this at all but I do remember waking
up and seeing my father and wondering what was wrong. I was taken
to the hospital and told that I had a cold but that there were still
some test they wanted to run to make sure that's all it was. They
came back and told me that I had a very low blood count and that
I would need to take some iron and find a doctor who specializes
in pediatric anemia. For 2yrs I went through my life only having
the anemia and nothing else. I must say though that when my doctors
told me I was unable to continue my basketball career after several
tries of begging and pleading I honestly just didn't want to live
anymore. I got my first job in the fall of 1996. I was so excited
to finally be able to make my own money. It wasn't till the summer
of 1997 that I began to feel different. I started having a lot of
joint pain and swelling throughout my body. I was tired a lot more
than normal. At first I thought it was from working several hours
at my job but when it became unbearable I knew I had to say something
to my mom. On the Monday before my first day of my senior of high
school, I went to the doctor to see if I could find out what was
wrong. After only running a few a blood test he came back in and
told my mom to take me straight to the hospital and that he hoped
it wasn't what he thought it was. At that point I was scared and
terrified, all I could think about was that I was going to die.
I was admitted to the hospital and immediately taken to run test.
After being poked and pulled all day I finally got a little relief
but that didn't last for long cause the next morning I was told
that I had Lupus an uncurable disease. I cried for days and questioned
"Why Me?" I wanted someone to blame but there was no one I could
blame. My stay in the hospital lasted a week but it felt like eternity.
I was missing out on my senior of high school and I was truly devastated.
That was only the beginning of the turmoil that I went through.
I was back in the hospital within 3 weeks due to a flare and had
to stay for two weeks. My next visit came during Thanksgiving where
I had to stay in the hospital for two weeks due to pneumonia. Once
again I went into the hospital 2 weeks before Christmas due to pneumonia
and I got lucky cause I was out 2 days before Christmas. I prayed
and I prayed that 1998 was going to be a better year, but my prayers
fell on deaf ears. I was taken out of school and put into a home
school program and had to quit my job. Just when I thought I was
getting a small break it all started up again. I was home on this
Monday as I was everyday but I knew there was something different
about this day. I woke up seeing yellow spots but not knowing what
it meant. I brushed it off thinking it was a reaction to one of
the many pills I was taking. I was laying around watching TV when
I tried to get up but legs wouldn't let me. I felt so helpless and
confused. In all my 18 years I never felt more embarrassed to ask
my father to help me out of bed and to the bathroom and worse of
all to help me use the bathroom. At that point I had had enough.
I was ready to give up and take my life and get rid of how I was
feeling. I guess that was the worst thing I could say because what
happened next was what I had asked for in a way. I lay there feeling
sick and wanting to vomit and when I bent over to do so I have no
idea what happened next. From what I was told I fell to the floor
and began to have a gran mal seizure. I was rushed to the hospital
but on the way there I stopped breathing and had to be intubated.
I was in a drug- induced comma for 4 days. Due to being the comma
I gained 60lbs of fluid on my body which made it difficult to walk
or even move in the bed. In my second week of my stay I was hooked
to a machine that took my plasma and redistributed it cause me to
go from 190lbs down to between 105-110lbs in 4days. I was also put
on dialysis. I ended up staying in the hospital for a month because
my kidneys had failed, my lungs became full of fluid, and my heart
was enlarged. I also began having ascities in my stomach. My condition
had gotten too be so unbearable that I once again wanted to give
up. After my month stay things got somewhat better but I started
having seizures here and there and the ascities was still going
on. I was able to go to my senior prom and to graduate from high
school. I was considered for a bone marrow transplant that took
me to Chicago for a few days but I was too sick to undergo the procedure.
My days have since gotten better. I still have the seizures here
and there but everything else seems to be doing better. My condition
is under control now and things are looking up. I graduated from
the community college in my hometown this past May getting my Associates
Degree. Though I am still considered disabled right now I plan to
continue my education in the spring and work towards my Bachelor's
degree. I know my message is long but I wanted to share with everyone
what I went through and that no matter what you can make it through
all the hard times. I know there were times when I wanted to give
up but I chose to continue my fight to win the battle and get to
where I am today. If anyone would like to contact me my email addy
is [email protected]."
"Hi My
name is Steven I am now 22 and got lupus when I was 16. I seem to
go through good and bad stages. Often very long stages of good when
the illness does not really effect me at. But when it does it seems
to hit very bad. I seem to find that it is not always the lupus
that trickers things. For example it seems that when I lose some
one close it starts the rollercoaster ride. This started last September
when I split from my girlfriend. This trickered depression I loss
interest in everything I was just about to start a new job and even
now I can't believe I still have the job the way I was the people
I worked with. I did't care what happen at work what I did I hated
everything and did not want to do anything. This went on and on
Christmas came I hated it. I didn't care about anything and would
do anything to have been happy again. It got so bad that in Janurary
2002 I attempted to kill myself and took an overdose. This put me
in hospital for about 6 weeks, which made me more depressed. I had
lots of counciling and have slowly coming back to be normal again.
However I have lost a great deal of confidence and often feel lonely.
I see when reading the other stories on the site that people would
not know what they would do if they did not have the boyfriend /
girlfriend. and thats what I hate the most about my life I am so
lonely and find it very hard to try and get to know people. I can't
see my ever meeting someone due to my lack of confidence which I
believe has been lost I believe through lupus and depression. I
often now still think back and wish I had died or think is there
any point to my life. Life should be fun and something you can share
with someone. If you don't have that then whats the point of it
all. All I want to have is someone to care for and make happy but
I can't ever see that happening not now. You can have all the things
in the world but if you don't have happiness I believe you don't
really have anything at all. If any one wants to talk to me then
email me [email protected] "
"My mom
has lupus, and all my life I never knew the pain and suffering she
truly went through. My sister and I thought she was crazy for always
sleeping, complaining she didn't feel well, etc. She had to quit
work and stay home b/c she was so sick, and we did not understand
why?? I remember when she had a stroke my senior year of high school,
and how upset we all were. We then knew how serious this disease
was....we almost lost her. Four years later, my senior year of college,
I started to get really sick. I was constantly tired, and I figured
it was the stress of my senior projects. Well day by day I could
feel myself getting worse. I starting losing weight, had uncontrollable
fatigue, and unbearable joint pain. After two weeks of not being
able to take a shower by myself, I had to go to the doctor. They
gave me arthritis pills at the emergency room, but that is about
all. I had to wait 2 months to get into see a Rheumatologist, b/c
there was only 1 in the town that I went to school. So for two months,
I would cry myself to sleep b/c I was in so much pain. It was horrible.
The first doctor I went to see told me I didn't have Lupus and it
is some virus that I had. I knew better. My mom knew better. She
was convinced that I was blessed with her misfortune! It did get
better for awhile. A year later it all started over again. Finally
last august, my new doctor told me that I did have lupus. I feel
all right most days, meaning there really never is a good day, but
none are too bad. It is a depressing disease b/c you look all right
on the outside to a normal person, but feel so horrible on the inside.
I am only 22 years old, and I missed out my entire senior year of
college b/c I was sick. None of my friends understood that when
I said I didn't feel well, I really didn't feel well. No one understands
what fatigue feels from lupus, the word tired becomes an understatement.
No one understands the pain in having Rayneuds Phenomenon, when
my fingers and toes are so cold I cry on my way to my car in the
morning when walking outside. No one understands that even thinking
sometimes is so strenuous you get a headache. No one understands
what it feels like be nauseous 24/7 due to all the medications we
take. Only lupus patients experience all these. I know that I have
a very mild case of lupus, and pray to God that mine does not worsen
into what my mom has. The saddest part of my day to day life is
thinking that my mom will someday die from the disease, like she
almost has in the past. I don't ever want to go through that. I
give people like my mom the utmost respect and love for being so
strong and courageous when battling this awful disease. I know the
reason I am strong is from watching her live. I also know that I
will be all right b/c of my husband Jeff, who goes out of his way
to take care of me every day. I know he loves me when he gives me
a piggy back ride to bed sometimes b/c I am so sick I can't make
it upstairs....now that is love!!"
"I was
diagnosed with SLE after 10 years of joint pain, weight loss, hair
loss and eye problems. Being the mother of two small children at
that time the doctors kept putting my symptoms down to just that....being
a mother! I thought I was going mad at times when the pains in my
head was almost too much to bear. One particularly bad time was
when I was hospitalised and constantly drugged to keep me quiet
as the headaches I was suffering at the time were making me cry
and walk as though I was drunk. I was very frightened. Eventually
I started having small seizures, mainly at night where I would lay
on the floor, wrapped in warm towels having lucid dreams and feeling
very ill. Being diagnosed came about by my waking up one morning
and losing the feeling down the side of my face and left side of
my body. I thought I had had a stroke at the age of 34. Blood tests
showed that I had SLE and I was again back in hospital, but this
time was different. I was listened to and although the diagnosis
was not a happy one, I felt relief that I was not as mad as everyone
had previously thought. I have been in hospital every year since
my diagnosis mainly due to illnesses I have been unable to fight
off...the most dangerous one being pneumonia in both lungs while
having a major flare. I have recently had a hysterectomy due to
cancer and since that operation two years ago I have only had two
flares that have been containable...for me there did seem a link.
I take Methotrexate and prednisolone now and feel pretty well most
of the time. I just wish that I had been helped earlier as the diagnosis
of SLE meant the start of my life again and not the end....I have
learned to live side by side with SLE, as have my wonderful family...best
wishes" Sally
"I live
in Johannesburg although Scottish by birth and my family still live
there. I am 42 years old and was diagnosed with SLE just over six
years ago but on reflection I was probably about 17 when the symptoms
really started. Over the last three years I have not been given
much of a break and am now at the point where I take Methotrexate
(a form of chemo therapy) weekly together with daily doses of Plasmoquin
for inflammation, Tryptanol to help me sleep, Rivotril for absent
seizures, Vioxx or Celebrex for pain and occasional massive doses
of intravenous cortisone for Optic Neuritis and injected cortisone
in my hips and knees for joint pain. I feel very fortunate that
I have such wonderful health care in what is considered a third
world country. My one big problem is depression which seems to come
in waves and can be quite overwhelming at times. I used to be an
aerobics instructor, teaching up to four classes a week, and now
battle to get in and out of our swimming pool although grateful
for the freedom the water gives me. I have found that although Shiatsu
is painful at the time I do then get a bit of relief for a couple
of weeks and there is nothing better than treating myself to a pedicure,
especially given that I often can't even put my own socks on let
alone cut my own toe nails. My biggest blessing is my husband who
I truly believe is one in a million. He is always there for me and
makes me see the funny side of things when all my walls are tumbling
down. Never being able to have children has been thing that was
difficult to come to terms with but we were lucky enough, when I
was able to look after him, to be foster parents to a wonderful
little African boy called Luke. I still work full time for a firm
of Attorneys and hope that I will be able to continue with what
is a very demanding but very rewarding job for a long time to come,
it is what keeps me sane although others may say that is impossible.
I would be very happy to communicate with anyone who would like
to share ideas, swop tips or just generally chat. I can be contacted
at [email protected]."
"My mother
has had lupus since I was about 15 years old. ( I'm now 22) I remember
my 15 birthday my mother was chubby and full of life and full of
spirit. But shortly after I saw a change. Her hair had started to
fall out. She developed many rashes and was always saying she was
in pain. Within what seemed like 3 months my mother had lost nearly
all her hair. There was days she couldn't get out of bed and all
she wanted was for me to help her with the chores. But being the
stubborn young teen i was i would not help her because i thought
if she would only get out of bed she would be fine. I know that
I hurt her because i refused to believe she was in pain. It took
me a lot of years to realize it was not in all my mothers head.
Anyways while reading everyones stories i started to understand
my mother more. Why sometimes she doesn't want to go anywhere or
see the family. I took me a long time to understand the pain my
mother was in. It was about 3 years after it all began and i was
explaining my mothers illness to a friend and it finally hit me....my
mother is ill! She has lupus..and all i could do was cry because
i realized what a horrible person i was for ignoring my mothers
pain and likely making it worse. my mother is doing much better
now. She has a 11 month old grandson who keeps her on her toes.(my
son) and it seems like all these years she was in a depression and
with my son she has finally come out of it. i just think these stories
are awesome and I think anyone who has lupus and a teen should sit
down and read these stories. they are like all the things my mother
was shouting at the top of her lungs , but no one could hear her
and she was to embarressed to tell anyone."
"My name
is Vicki Anderson. I'm 15 years old and have been diagnosed with
lupus just this year. When I first heard the news I was thinking,
"what's lupus?". I had no clue what it was. All I new was that my
joints were cracking and snapping and were extremely painful, I
was getting the most horrible rashes, I was have bad intestinal
problems, my hair was falling out, and I was losing quite a bit
of weight. The weight part wasn't so bad since I'm down to 5 in
pants. I'm extremely worried about my family since I don't want
them to get lupus either. My older brother is showing quite a few
symptoms and signs of this disorder also. I live in London, England
with my seven other brothers and sisters. Luckily I'm not on steroids
yet but I'm on three different medications which don't make me feel
well at all. I'm learning to cope with the fact that I don't get
to do sports! and don't get to lead the normal life. But like I
said, I'm learning to deal and I think that that makes me a stronger
person."
"i Just
Stumbled upon your site this evening. And i found alot of interesting
stuff on here i also found that there are alot of people mostly
women that are suffering from SLE Such as myself which makes me
glad 2 know im not alone in this. I'm An 18 yr old Girl that has
had lupus since the age of 13. it was very hard 2 diagnose my diease.
i mean i wokeup one morning with terrible joint pains that i figured
were the cause of a flu coming on. but after waking up everyday
with the same pain that seemed 2 be getting Worse and worse where
it got to a point that my finger joints littrelly went stiff and
if you tried 2 touch me with ur finger i would scream and cry from
the pain. it got so bad i couldent move cuz the slightest movement
would cause me 2 cry from the pain i was experiencing. My joints
werent the only thing that was the problem i was also loosing my
hair and completly lost my appetite . When i went 2 the doctor they
said it was stress and the way i was sleeping. i ! Was so upset
cuz i knew it was strange it had 2 be something else so i underwent
MRIS blood tests you name it. Till oneday they finally told me the
news i had SLE i couldent believe it i started cryingggg i hated
it. i was only 13 trapped in a 50 yr olds body it wasent fair. This
Changed my life completly. i used to have 2 take predinsone and
plaquanil but now i only have 2 take plaquanil. Right now my lupus
is on remisson so i was told the lasttime i went to see my Ruemotologist.
Anyway i just wanted 2 share my story with Fellow SLE Sufferers!!!!!.
the thing that makes me sad the most is that my joints are now weak
n i cant do alot of stuff when i was 13 cuz i get tired easily and
all. IF you want to chat you can e-mail me At [email protected]
i'd love 2 chat with others who are going through what im going
through!"
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