Living with lupus

Living with lupus

BY KIMBERLY BAILEY-TUREAUD

With the largest and most far-reaching epidemiology study ever conducted on lupus showing that black women are disproportionately burdened by the disease, we asked three dynamic black women in Las Vegas to share their stories of survival.

Lady “J” Huston, entertainer, entrepreneur and celebrity spokesperson for the Colors of Lupus organization: It all started this past August, when I had my first seizure that devastated my body and my lupus got worse. I also have fibromyalgia that all ties in with my autoimmune disease. I stayed in the hospital for six days to try to get my body back together, but unfortunately it has taken longer than I expected and I had to go to rehab for extended care. I am still in a state of recovery because I have had several seizures that I now know are associated to my lupus. The doctors think the lupus has gone into my brain and suggest that I go to a higher level medical facility such as a Mayo Clinic or Cleveland Clinic. So, at this point in my life, I have to stop performing, I can’t drive anymore and I need constant care. I am in the process of moving back to St. Louis, where the rest of my family lives. I was first diagnosed with lupus in 2001, but I think I had it earlier. In 1995 I used to take aerobics classes at the gym and I always could keep up with the class. One day I stepped out of the front row of the aerobics class and after a few days found myself in the back row until I couldn’t keep up with the physical demand any more. I went to the doctor back then and that is when the doctor told me I had fibromyalgia that causes muscle pain and weakness. It affects all parts of the body and made me very ill. When I went to the doctor for my fibromyalgia they didn’t reveal to me that they were testing me for lupus. I was asked questions such as: “Do you have sun sensitivity?” I replied, “Yes.”  The doctor also asked if I break out in hives and if I have pain. I replied, ‘yes,’ to all her questions. Most of my symptoms were related more with the lupus disease. I was losing my hair and my DNA test was positive for the disease. They think now I have lupus in my brain, but the doctors are not sure.

, retired legal assistant: I first discovered I had lupus in 2000 because I had a lot of aches and pains. I was initially referred to a rheumatologist and they found out that I had rheumatoid arthritis. The doctors decided to do more testing on me and found that I had symptoms related to lupus. When I first found out I had lupus, many people didn’t know a lot about the disease. That is why you really need to go see your doctor, so you can be referred for all the right testing. Some of the signs of lupus that can also turn into a lot of other illnesses are: aches, pains in the joints, soreness, anemia, low white blood cell count, rashes and sun sensitivity. The bottom line about lupus is that it makes my immune system weak and my body can’t fight off infections. I am very sensitive to the sun and fainted one time at a jazz concert. Lupus is not contagious but if you have lupus you must try to wash your hands regularly and stay away from germs. The thing I want people to know is that you can live with lupus. I am a strong woman — and I’m consciously working to keep my spirit up, because this disease can knock you down.

Angela Britt, interior designer: I can remember getting sick when I was 19 years old, but no one knew what was wrong with me. I was in college trying to be all that I could be and I passed out. The doctor thought I was just fatigued or I had mononucleosis. They told me that I had cancer of the lymph nodes because I was very anemic. I was in the hospital for seven weeks, and they still couldn’t figure out what was wrong with me. So they put me on prednisone, sent me home and told me I had six months to live. This was in 1976 and in 1977. I went back to college — because if I only had a short time to live I wanted to be happy. I was OK until I got married and was pregnant with twins. I didn’t know I had lupus at the time, and I lost the twins. Then I got pregnant again in 1981 and I got real sick and lost a lot of weight. The doctor told me “I have good news and bad news to tell you.” She said I was pregnant, but the bad news was that I had lupus and she suggested I abort the baby. I told her I couldn’t do that, and now I have a healthy daughter who has given me four grandchildren. I have been in remission from my lupus for a while. I decided a long time ago to take care of myself and I changed my diet and refuse to do anything I don’t want to do. I avoid being around people that aggravate me and avoid any arguments. I release myself from anything that makes me sick. I don’t drink coffee or any soda with caffeine because caffeine is a stimulant. I drink a lot of water and if I got more rest. I know I could outrun anybody. I believe that God has touched my body because the doctors have done nothing different. My doctor doesn’t understand why I am not in pain all the time. I only have challenges in my joints when it rains, or when I go back East to the humidity. Currently, my only ongoing obstacle is my memory.