I have never done anything
like this before. I have never actually told anyone the
whole story. So many things started swirling in my head I
barely know where to begin. I figure the best place is the
very beginning, my birth on February 2, 1983.
When I was born I had jaundice
and ended up being allergic to every formula on the market
at the time. I lost an entire pound a day after I was born.
I recovered from this only to suddenly run a high fever
and become limp. I had all the symptoms of meningitis but
when the doctors did tests it wasnít what I had.
They told my mother it was some
rare blood disorder they couldnít identify. I know now
that there is a symptom of Lupus known as Aseptic
Meningitis, in which the immune system attacks the brain
stem mimicking meningitis. The doctors wanted to give me a
complete blood transfusion but luckily my mother would not
allow them to due so. Looking back, a complete blood
transfusion probably would have killed me. After being
pumped full of the strongest antibiotics available I
recovered with out brain damage. What I know think was as
Aseptic Meningitis happened two more times before I was
seven. But no one could tell my mother what was
I spent my childhood usually
sick with constant bronchitis and urinary tract
infections. When I was ten I was in a car accident that
should have killed me. While riding my bicycle I was hit
from the side and dragged under a pickup truck for 15
feet. By some miracle of God I escaped the accident with
only road burn, a broken finger in my left hand and soft
My mother had to fight tooth
and nail to get the doctors to listen to me. They decided
I was just a kid trying to get attention and there wasnít
really anything wrong with me. Yet after operations, and
countless physical therapy sessions over the course of
four years they still didnít know why I was always
During high school I was
consistently having trouble due to numerous absences from
school. I also serious kidney infections and had several
ultrasounds, which also showed nothing. As a freshman I
had moved to a new school and began seeing a new general
practitioner. But she sent me to a psychologist because
she believed I was a hypochondriac and my mother was just
giving in to me. I was beginning to believe it myself.
Then I had to get a vaccination for school in my junior
year and I became extremely ill, which mirrored the same
reaction I had to the vaccines as a toddler. Half way
through my senior year of high school I had to go on home
schooling because I was too sick to attend regularly. The
doctor was starting to change her opinions. My school was
shocked when the doctor signed the forms. You see when
you have lupus or undiagnosed lupus you donít look sick
and so everyone believes you are simply faking it.
I canít even remember now how
many doctors I was actually sent to. I was finally sent to
an orthopedic specialist in Philadelphia. After actually
listening to me he suggested I see a rheumatologist. I was
able to get an appointment for later that year. I
graduated from high school and was feeling better over the
Going to college to become an
anthropologist has been my dream for quite a long time.
When I got into the college of my choice I was so excited
that I decided to go that year even though I still wasnít
feeling my best and against the advice of my mother. The
week before I was going away to college I went to see the
rheumatologist and she sent me for some blood
A week later, eight hours away
at college I called her office to find out the results.
She called me back personally to tell me know I had Lupus,
with a positive ANA.
At first I was relieved, they
finally put a name to everything that had been happening
to me. I wasnít crazy! I wasnít a hypochondriac. I wasnít
faking it. After that wore off I realized I had an
incurable disease that at anytime could become life
Thatís when it really hit me. I
would be dealing with this the rest of my life. The
rheumatologist prescribed Plaquenil for me and it made a
big difference in how I felt.
That first semester of school
I did really feel well, getting a B for my anthropology
class. I even got a great roommate. Second semester things
changed despite the medication. During my second semester
winter as was setting in and I started not feeling so
great. The pressure of the financial troubles I was
having didnít help either. First there was the persistent
sinus infection and I was on antibiotics for two weeks
longer than I should have had to have been. Then I started
losing weight, 70 pounds over only a few months. I wasnít
hungry and constantly nauseas. I started throwing up even
when there was nothing in my stomach. It got to the point
where I would have to leave class to run to the nearest
rest room to throw up. I started missing classes and got
behind in my work. I was having severe back pain, I
wasnít sleeping and I ended up at the hospital.
Finally near the end of January
2002 my mother, the doctor and the school decided I should
go home on a medical leave.
I was crushed. All of my dreams
were crashing down around me.
The only reason I wasnít put in
the hospital is because my doctor has found that Lupus
patients donít do well in there. It puts them under more
stress. So I was home. At first it felt strange like
somehow I didnít belong there. I fell into a deep
depression. I spent my days in bed at times too sick to
even make it to the bathroom without help. In March of
that year I was also diagnosed with Fibromyalgia and put
on even more medications. It is very common for Lupus
patients to also have Fibromyalgia.
I slowly began improving. It
took me almost a year and a half to accept my disease and
how it had changed my life. It wasnít easy. I began
reading and researching everything I could on the subject.
I found that the more information I acquired the more I
was able to learn to live with Lupus instead of being
simply dominated by it. I also found that there are others
out there like me. Itís extremely comforting to know you
are not alone; youíre not the only one.
Iíve also learned a lot about
myself and a lot about life. Iím 21 and Iím still dealing
with many symptoms and remission isnít in sight yet but I
donít take things for granted anymore. My friends always
ask how I can be so positive after all of this. I tell
them that Lupus may challenge my faith, my hope, my
courage, my love and my conviction but it only makes me
more certain that I am truly alive. I may not win this
battle but I will always rise to meet the challenge and
maybe it will be a tie instead of a loss.