Throughout my childhood I suffered from many infections and unexplained pain but doctors seemed unable to provide answers. At age 18, an astonishing new symptom appeared. Bruising all over my body with no corresponding injuries to explain how the bruises occurred. Our family doctor referred me to a haematologist and I was immediately admitted to the hospital. Following a battery of tests, I was diagnosed with leukemia. This was back in 1971 and lupus was still a veritably unknown disease. Six months and a variety of treatments later, my blood tests showed no improvement. The next seven years were consumed with visits to specialists, tests and periods of hospitalization.
Finally in 1978, I was referred to a rheumatologist specializing in autoimmune diseases. The rheumatologist ordered special blood tests that were cultured in the United States. A few weeks later, I received the diagnosis of lupus. I felt a tremendous relief at finally being able to give a name to what was causing all my problems. Accompanying the relief, however, was trauma as I was told that my life expectancy would be about 30 years of age. Information obtained through my personal research was unequivocal. The disease was fatal. My rheumatologist started me on treatments of large doses of Solu-Medrol intravenously introduced to my blood stream. This procedure was called 'pulse therapy'. The 'pulse' treatments meant going to the hospital every two days and the therapy lasted 2-3 hours. The 'severe flares' I had been experiencing every few months were reduced. The rheumatologist also prescribed an anti-malaria medication called Plaquenil in an effort to control the frequency and severity of my flares. Each time I had a severe flare it affected another organ of my body but the symptoms were never the same.
At this period in my life I was trying to work full-time and raise our young son. There were many days I believed this disease would ultimately win the battle. In the early 1980's, the lupus attacked my liver and heart. In 1984, I was hospitalized and scheduled for a liver biopsy. This should have been a routine procedure but as many lupus patients know firsthand, "routine" is seldom found in the vocabulary of those dealing with "The Disease of a Thousand Faces". Complications after the biopsy caused the abdominal cavity to fill with bile. Lloyd, my husband stayed with me day and night, sleeping on a chair at my bedside. After the third day, I was experiencing severe pain and tightness in my chest. Many doctors were consulted, as I slipped in and out of consciousness, occasionally peering at the "bright light" that hovered near me. Lloyd was advised to call in the family. My heart was racing at an uncontrollable rate (in excess of 250 beats per minute). Because of the trauma to my heart, I could not withstand anaesthetic for the next procedure. Making a cut in my left shoulder area, a tube was inserted directly into the heart to allow large amounts of liquids to be pumped out to encourage conversion of my heart rate. Even after successful conversion my status remained too unstable to risk anaesthetic or pain control medication.
During this time my stomach cavity had increased in size by over 4 inches, creating a desperate need to drain the bile that was invading my body. An incision was made on each side of my belly to drain the seven litres of bile. Tubes were inserted into the incisions to allow continued flushing and drainage of the abdominal cavity while the liver healed over. Two weeks later, I was finally allowed home. Because of my body's extreme exhaustion, I had many severe flares over the next few years. The liver was permanently damaged, but the doctors believed the heart was fine.
I continued on with the conviction that if I did more and stayed active, I would be taking charge of the disease, rather than the disease taking charge of me. Once I passed my 30th birthday, I was convinced I had won the "big battle". I made a pact with God, 'if I lived a very disciplined and healthy life style, he would aid me in continuing to take control of my own life and thereby my future'.
In the early 1990's, I was asked to take part in a research study for autoimmune diseases. After a number of months on new medications, I finally experienced a good night's sleep! Life improved and I was able to return to work and even take on a management position. For a number of years, I managed the 'flares'. In 1995, the loss of my father triggered increased trauma. Again the disease took over and I finally had to resign from my job. Luckily God had given me my first grandchild in December 1994. I realized how special this new life was to me. I had a strong desire to watch him grow up. Soon two more grandchildren arrived and they taught me how to enjoy my 'retirement'. We explained that Grandma had 'little muscles' and therefore was unable to lift them. They were so wonderful and understanding as they crawled onto my lap with just a steadying hand rather than a bold lift from the floor.
In 2004, my heart began to have problems, and in 2006 I went to Calgary for a procedure called 'electric heart ablation'. The ablation was a resounding success. So I have learnt over the years, never take life for granted and enjoy the 'special things' in life, and cherish the love and support of family and friends.
I am now able to expend some energy on helping other people with lupus. Over the last ten years, I have seen the research results for lupus expanding and the ability to maintain a quality lifestyle increase through earlier diagnoses. The future continues to hold new promise and the day is coming when we will know be able to access "the cure for Lupus". God Bless all who read this.