My name is Crystal Bradley and I have been involved with the Lupus Foundation of America, Indiana Chapter for some time now as a support group member, volunteer, committee member and the 2019 Walk to End Lupus Now Chair.
As one of the many faces of lupus, my journey has been just that, A Journey! In the summer of 1991 it started out with me having a month-long body rash and swelling in my hands. That turned into a headache, which turned into a fever and multiple trips to the doctor. After being asked if I had changed laundry detergent, changed my soap or if I was allergic to strawberries, I was sent to a dermatologist where they ran multiple tests and drew blood. From the blood draw I was told I needed to go to the emergency room because I may have hepatitis. It turned out I didn’t have hepatitis, but I ended up staying in the hospital for nine days. My white blood cell count was so low that the doctors, nurses and my family had to wear masks and gowns when they came in my room. They took multiple baby food jars of blood from me, ran test after test but came up with nothing!! I lost ten pounds and had no energy at all! When the swelling went down and stayed down in my hands, I was sent home and told I was stressed out and working and going to school was getting the best of me.
Fast forward to 2006...I had a pain in my left hand between my middle and ring finger that wouldn’t go away. I nursed it for about two weeks with Tylenol, Advil and ice until it woke me up in the middle of the night with the worst pain I had ever felt. I thought my hand was broken, but hadn’t hit it or done anything to bring on that much pain. After x-rays and other tests, more blood was drawn and I was tested for lupus. They ran the test four different times and it came up positive. I had Systemic Lupus Erythematosus or SLE. What was lupus? I didn’t have any knowledge. I had a second cousin that had passed away of it but still didn’t know what it really was. I was sent to a rheumatologist that again gave me the diagnosis and shoved a tall pile of literature in my face and told me to go home and read about it. As I left the doctor's office in tears and full of fear, I begin to wonder what I was going to do. Was I going to die? Will people look at me funny? Will I be able to live a normal life? I had major chronic fatigue and my joints and muscles in my arms and legs hurt. I didn’t want to do anything but lay around. Thinking back, I truly believe that my first initial flare happened in 1991 with my nine-day stay in the hospital. Back then doctors didn’t know to test patients for lupus. I prayed, my family and friends prayed for me, and I knew I had to do something. I had to fight! That’s when my mission began. I began to research and learn all about this “thing” that was trying to take over my life. A short time later I found a lupus support group. We were meeting at a library. The next year I walked in the lupus Walk and then I joined the Walk committee.
I have seen the Foundation grow and evolve, making an impact on the community. It is important, as a lupus patient, to help other patients, be a part of the continued growth, increase financial contributions and build ongoing successful relationships. I am excited to help spread awareness about the disease I fight daily.