Living With Systemic Lupus

 Lupus? In 1995, I had heard of lupus but I really did not have a clue what it was! One of my co-workers had been diagnosed with lupus, and I watched her take her many medications each day after she ate her lunch. She looked well, there was nothing different about her which I could tell.  We were both Nurses, working together in a mid-size Hospital on a Medical-Surgical floor. No one ever asked her about her lupus, and it did not seem to affect her performance at work.

As I look back now, I know my co-worker must have had some days at work when she could barely get through the day. I have lost touch with her, but her strength lives on with my determination to educate the Public about Lupus.

We moved from the East Coast to the Midwest in 1993. Our move was based on my health, and the fact that my entire family had relocated to Oklahoma a few years earlier. In 1993, I was doing my usual job of working at the Hospital as a Nurse. One particular evening I was hit with a very bad stomach flu after I ate dinner at home. As the evening wore on, so did my symtoms of stomach issues and pain ! After three hours of esculating symptoms and abdominal pain, I decided to visit the Emergency Room where I worked. This was the beginning of my journey with systemic lupus. I was quickly admitted to the Hospital that evening. Many tests and x-rays were done during the night, and my Doctor came in with the results very early the next morning. I had a twisted large intestine, causing a blockage and I needed emergency surgery!

The surgery went well but my recovery was a different story. Oddly, I had many unknown  allergies to medications and my entire body broke out in a rash from the pain medication which was being delivered through my intervenous bag. Something was not right, and the Staff was on track to figure out what was going on. I had many blood tests within the next twenty-four hours, and it was the lab. attendant that I questioned about the blood tests. Since we knew each other, I believe she felt it was appropriate to be honest with me. She told me the Staff felt I was showing signs of systemic lupus! The tests came back fairly quickly, but it seemed like a lifetime to me. Some results were positive, some were borderline, and then there were the tests that came back negative. The experience was bittersweet. I had been feeling fatigued during the weeks before the surgery, even running a low grade temperature at times. But I was too busy to pay attention, and kept pushing myself everyday. Now I did not have an option. I had to heal, and the healing process with lupus is slow. My life changed that week, and I had some heavy decisions to make. After ten days in the Hospital, the Doctor discharged me with instructions to stay home for six weeks. My Mother came to stay with me and help with my children for two out of the six weeks. While Mom was at my home she suggested we all go back to her home in Oklahoma and rest. She told me how peaceful it was there, no sirens blasting, a totally different way of life. I thought about it, and I knew she missed my Dad. We left for Oklahoma within three days. Mom was right, it was extremely quiet in Oklahoma, and just what I needed to de-stress and heal.  I loved the peacefulness, the small town, and the friendlyness of the people. During my stay, I decided it would be best to be closer to my family...now that I had lupus. I purchased a home, and put my home on the East Coast on the market during my visit. Everything fell into place and I moved within two months.

I have learned a lot about lupus since my diagnosis. Years ago, it was considered fatal. Now there are medications to assist with the complications lupus brings. The internet has played a huge role in educating people about lupus, and there are more people being diagnosed now. There are more people diagnosed with lupus than there are people with aids, multiple sclerosis, and muscular dystrophy all together! About 1.5 million people have been diagnosed with lupus in the U.S., and there are many more people waiting for a diagnosis. Lupus is difficult for the medical profession to diagnose because it waxes and wanes. Sometimes it will show up in a blood test and other times it won't. There are specific blood tests that are done to find lupus. More women at child-bearing age are being diagnosed now. Many of these women have had misscarriages, and don't know they have lupus. Once they are diagnosed, the outcome is good today. Many women with lupus do have children, but they must be monitored during their pregnancies. There have been many advances in the medical world since my diagnosis in 1995, and I hope there will be even more in the years to come! Lupus is a complicated disease, which may effect the lungs, skin, heart, brain, kidneys, and eyes. The disease is insidious, and each patient must have a good working relationship with their team of Doctors.

Lupus is an autoimmune disease, in simple terms, it develops when the body becomes allergic to itself, making too many antibodies and directs them against body tissue. There are six known types of Lupus. Seventy percent of people diagnosed have Systemic Lupus, of which 35% have Non-Organ threatening disease and 35% have Organ threatening disease, 10% of the Lupus population have Cutaneous (Discoid) Lupus, 10% have Drug-induced lupus, and 10% have Mixed Connective Tissue Disease.

www.Lupus Foundation of America (LFA), 800-558-0121

www.Arthritis Foundation 800-283-7800

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