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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 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 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 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 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 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 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 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 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 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 threatening.

       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.


Janine Panna
© 2004