fatigued, but I also was losing my hair and my appetite. Cecil called his cousin who is a physician and asked for referrals for physicians. The young doctor he recommended assured me that he would find out what was wrong with me. After a battery of tests, he initially thought I had sarcoidosis, a disease that causes inflammation in the lymph nodes, lungs, liver, eyes, skin and other tissues. But he wanted to do one more test. That test confirmed that I had lupus.
Almost too late
My diagnosis almost came too late. After my primary care physician diligently researched the few facts available about lupus, my symptoms, and laboratory results, he referred me to a rheumatologist who specializes in the care and research of lupus patients. I had an appointment scheduled for February 14, 2006, Valentine’s Day. The Sunday before my appointment, I was in pain and
To living with purpose
What is lupus?
Lupus is a chronic and unpredictable autoimmune disease that may cause inflammation and tissue damage to virtually every organ system in the body. In lupus, something goes wrong with the immune s ystem, which is the part of the body that fights off viruses, bacteria, and germs. The immune system goes into overdrive, and instead of providing protection for the body, it attacks healthy tissues and organs. There is no one test for lupus. Doctors look for a combination of symptoms, family history and other “markers.” Two of my nieces were diagnosed with lupus. Both died at an early age. According to the Lupus Foundation of America, at least 1.5 million Americans have lupus. It is believed that 5 million people throughout the world have a form of lupus. Lupus strikes mostly women of child bearing age (15-44), but men, children and teenagers can also develop lupus. People of all races and ethnic groups can develop lupus. But women of color are two to three times more likely to develop the disease. I was relieved that I finally had a name for what I had been experiencing for years. coughing up traces of blood. I stayed in bed all day, curled up in a ball. That Monday morning my husband took me to the emergency room. After an examination, doctors suspected that there was fluid around my heart and lungs. I was admitted to the hospital. I had been diagnosed with lupus a week before. At around 2 that morning, I experienced acute respiratory distress, coughing up blood, hypotension, presumed seizure, and loss of consciousness. The medical staff ordered a respiratory code (breathing and possible airway blockage emergency). They sedated me and put me on a breathing tube. For 65 days, this was my existence in the intensive care unit. Because of the tube, I couldn’t talk. Much of the time, I was sedated. My husband and daughter became my voice. My husband stayed by side day and night, writing down everything and questioning doctors. My daughter, Carla, a speech pathologist, realized I needed a way to communicate with the hospital staff and gave me a tablet to type my thoughts. I was given chemotherapy. In addition to corticosteroids, lupus can be treated with non-steroidal anti-inflammatory drugs and chemotherapy drugs. CONTINUED ON PAGE 28 9 Winter 2012 / The Well Magazine
2011: Preparing for the Chicago area South Suburban Lupus Walk.