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One day in July, I convinced my mother to let me accompany friends to a community swimming pool. The mile-long trek in the blistering sun tired us, and we were looking forward to the cooling water. But at the pool, an inhospitable attendant shouted at me, "you've got some nerve expecting me to let you swim here. Go home until that rash clears." The mirror in the change room revealed a mask-like, scaly rawness on the bridge of my nose and across my cheeks. (I now know that this butterfly configuration which itches and burns is a symptom of lupus caused by the sun. It meant that my lupus was not under control. My parents phoned the doctor immediately. He referred me to a dermatologist who discovered that I was anemic and arranged for me to have a bone marrow test. We went back to the dermatologist's office a few days later to hear the results of the test. He was convinced that my rash and kidney problems were caused by systemic lupus erythematosus. There was no known treatment for lupus, or information for patients. Dr. White could only hope that in time my body would recover on its own, and he prescribed what he thought best - another year of complete bed rest. (Long-term bed rest is no longer viewed as the cure-all that it was believed to be in the 1950s and earlier. In fact, 'weightlessness' is a factor in slowing growth and bone development in children.) The following September I was able to return to school. I was excited but also nervous at the prospect of entering Grade Eight, a long way from Grade Five where I had left off. I looked so healthy that my family and doctor began to think that I might be over my kidney problems - and as for lupus, it was never mentioned. My parents later said that they thought the diagnosis had been wrong. Nobody mentioned the probability of lupus being in remission, which actually was the case. As for me, now in high school, I simply reveled in the wonderful feeling of being back to normal. However, soon I began to find the pace of school exhausting. My eyes and ankles were puffy in the morning, symptoms of kidney problems that I tried to conceal from my parents. The thought that I might have to put my life 'on hold' again hung over me like a dark cloud, and I ignored the fact that I was in trouble again until I had no choice. One night, I awoke to find my parents standing over me. They were startled when I opened my eyes, and their reaction made me run to the mirror. It was clear that my pretense of being well was over - the swollen face with mere slits for eyes signaled kidney problems - the lupus was back! We called Dr. White's office but he was out of town. This turn of fate brought us to meet Dr. Ronald Elliott and, in retrospect, I doubt that I would be here today if I had not. Dr. Elliott became my doctor, friend, and confidante for many years. After he examined me, he told my mother privately that I was close to death. He said if I were to recover from the near heart failure I was experiencing (from kidney damage), it would be the beginning of a long, difficult road ahead for all of us. Sympathetic to my fear of being hospitalized and away from my family, Dr. Elliott visited me at home instead. In fact, he kept me out of hospital for the next 20 years, although I had several severe flare-ups of lupus to contend with. Dr. Elliott knew about cortisone from current literature, and he read everything he could find on lupus. Rather than 'non-treatment,' his approach was aggressive intervention. He used cortisone, antimalarials and A.C.T.H. hormones, which stimulated the adrenal gland's production of natural cortisone. In the late 1950s, cortisone was being hailed as a miracle drug, but not much was known about the side effects it produced. I was 13 years old, again feeling well, but embarrassed about a huge and rapid weight gain, a side effect of the medications, and which created what was called 'moon face.' My facial features changed so much that no one who had not seen me for a while recognized me. I was very sensitive about my appearance, which I thought was freakish, and I dreaded having to pass other children on the street because they would make fun of me. Finally, after a year and a half, I was 'weaned off' cortisone and most of the side effects disappeared. I was well enough to return to high school, graduating without any further interruptions. I had learned to avoid demanding situations whenever I could and I decided to put off university for a few years. Instead I accepted a secretarial position at a company in Hamilton. I entered this stage of my life full of hope. However, one year later, the joints in my legs and arms were stiff and painful again. My sister, Lynn, had to help me get into and out of my clothes. Although a hot bath and some aspirin in the morning got me through the workday, by early evening I was in agony again. I generally went to bed very early for some relief from the pain. My hair started falling out too. It was a shock to find clumps of it on my pillow in the morning. Although I did not actually go bald, my normal abundance of long, think hair thinned out to barely cover my scalp. Of course, this completely sabotaged my attempt to hide my illness. I felt I had no choice but to quit my job to recuperate. After just six months, my hair returned to its natural state, and once again I looked the picture of health. I found a new job and returned to work. In 1970 I met my husband, Ian. When our daughter Jennifer was born in 1973, I was happier than I had ever dreamed I could be. I thanked God for a healthy child, and we felt truly blessed. I knew that I was lucky to have come through this pregnancy without any problems in view of the long-standing and severe episodes of lupus I had endured in the past. I was less fortunate two years later with a second pregnancy. I had a miscarriage, something that occurs frequently in women who have lupus and who have an anti-coagulant factor in their blood. Such women may also have problems after a successful pregnancy due to hormonal changes. Up until the 1970s, women with lupus, not in remission, were advised against becoming pregnant. (There are now obstetricians who specialize in 'high-risk' pregnancies and specialists in lupus to monitor a woman throughout her pregnancy and afterwards.) Jennifer was just over two years old when my world began to fall apart. Once again, I became victim to a long and vicious assault of lupus. Physical exhaustion was so great that I had no energy to look after her, and managing my home became an insurmountable task. I went to bed as early as I could, and got up as late as I could. In between I was a zombie. It was all I could do to get through to 5:30 p.m. when Ian returned from work to take over. He became surrogate mother, cook, cleaner, nurse, as well as father in our home. Once again I was prescribed high
doses of prednisone, a derivative of cortisone, which causes
'cushingoid syndrome,' a factor in the development of early osteoporosis.
I was in a catch 22 situation. I needed the prednisone to hold
back my immune system's attack on my own cells, but the drug
had devastating side effects. Continued |