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JANINE
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 wasn’t what I had.
They
told my mother it was some rare blood disorder they couldn’t 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 wrong.
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 tissue damage.
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 wasn’t really anything
wrong with me. Yet after operations, and countless physical therapy sessions over the course of four years they still didn’t
know why I was always sick.
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 don’t look sick and so everyone believes you are simply faking
it.
I can’t 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 summer.
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 wasn’t 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 work.
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 wasn’t
crazy! I wasn’t a hypochondriac. I wasn’t faking it. After that wore off I realized I had an incurable disease
that at anytime could become life threatening.
That’s 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 didn’t 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 wasn’t 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 wasn’t
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 wasn’t put in the hospital
is because my doctor has found that Lupus patients don’t do well in there. It puts them under more stress. So I was
home. At first it felt strange like somehow I didn’t 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
wasn’t 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. It’s extremely comforting to know you are not alone; you’re not the only one.
I’ve also learned a lot about myself and a lot about life. I’m 21 and I’m still dealing
with many symptoms and remission isn’t in sight yet but I don’t 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.
Janine
Panna
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