In 1993, I was a typical young college student at the University of Illinois—going to classes, studying all day, and going out dancing on the weekends. All of a sudden, never having been sick before, I began having random medical symptoms—achiness, anemia, fatigue, rashes, etc. Over the cource of a year, I saw numerous doctors, but was either misdiagnosed or told there was nothing wrong, or worse, that it was all in my head. But then, in the spring of 1994, after a laparoscopy for endometriosis, my life turned upside down when I was hospitalized for a month. My initial symptoms were meningitis and an intestinal infection, but I was eventually diagnosed with Systemic Lupus and Stage IV Nephritis.
My kidneys were functioning at only about 10%, and every possible organ system that could have been affected by inflammation was-I had pleurisy, pericarditis, central nervous system swelling, etc. My parents were told three different times during that month that I had passed away, but each time, I pulled through. I was told that I needed to immediately start on Cytoxan therapy, which is a type of chemotherapy, in order to reduce the inflammation in my kidneys and prevent kidney failure. I was given a 5-year prognosis.
That was over 19 years ago, and clearly, I have survived and surpassed my prognosis! I mainly deal with achiness, pain, and fatigue. Though management of my disease is a full-time job, I am in clinical remission, and I'm lucky to have the unconditional love and support of my incredibly supportive parents, brothers, other relatives, friends, and most importantly, my amazing husband. They are there for me when the lupus is threatening to break my spirit, and they are there to help remind me of the fact that I have survived so much worse.
I actively educate others about lupus and the symptoms, and I am also involved with Lupus Research Institute Chicago. Each spring, I travel to Washington D.C. along with numerous other advocates to educate lawmakers about lupus and to seek much needed funding for the research and discovery of better treatments.
Because I survived, I am determined to do whatever I can to advocate for others—I strive to make sure that my diagnosis and struggle are not in vain. I refuse to let lupus define me. Having been through all that I experienced, I have a unique perspective and insight into what others deal with and can offer suggestions on how to maintain a quality of life and to feel well physically, emotionally and mentally. I am not only blessed and fortunate to be alive, I have been able to maintain a relatively high quality of life despite the lupus, and that is my wish for all others who have been diagnosed with lupus as well.