|Queen of pain
Wednesday, April 18 2007
click on pic to zoom inAgnes James-Bazil determined to live. ...IMAGINE having to battle a rare disease that cripples your life, mutilates your body and pelts you into severe depression with thoughts of suicide. On top of that, imagine having to wait years for a correct diagnosis, while your body suffers with the intolerable pain.
In the early 1980s, Agnes James-Bazil discovered that her body would swell, itch and hurt. She had consulted with many medical practitioners but still the pain persisted.
“I was desperate and needed help. I went to everybody. There was nothing I wouldn’t do for a cure. I tried everything. I even drank a mixture that looked like it came straight from the dirtiest canal. If anybody told me to try anything, I would have done it,” a tearful Agnes said.
“I always felt so tired, and I seemed to suffer colds much worse than anyone else. When I got married I was swollen and my skin was egg-washed. My husband said he would marry me even if my skin was pink or purple,” she said.
Agnes recounted a tale of pain, pain, and more pain for many years.
“I was diagnosed with everything, from lupus to kidney disease, until they didn’t even know what to diagnose me with anymore,” she said. “My mouth would twist sideways, I couldn’t walk, and my muscles would fail to function. My skin would get like leather — hard and rough. I was always falling and there were times when I couldn’t swallow anything. I almost died once because I stopped breathing properly,” she said.
Eventually, Agnes got the truthful, grim news from her doctor. “Well girl, that’s it. You going to die. You will live up to 50 years of age. They were so cold, the way they told me that I was going to die,” she said. With the news of an early death came the fact that she was suffering with Scleroderma.
With the diagnoses, Agnes became very unsure about her future. “I started to prepare because I had 18 years again to live. I had a time slot in which I wanted to get everything done before I died, “ Agnes said.
Like any desperate person, hoping against all hope, and after years of misdiagnosis, Agnes went abroad for a second opinion. Experts at John Hopkins Hospital in Baltimore confirmed that she did in fact have Scleroderma, a rare disease which thickens and hardens the skin.
Proper diagnosis of Scleroderma is often long and difficult, since it is a rare disease which few doctors are properly versed in, and in the early stages it may resemble many other connective tissue diseases, such as Systemic Lupus Erythematosus, polymyositis, and rheumatoid arthritis, just to name a few. Because of this, Agnes felt like she waited an eternity before finally getting the proper diagnosis. Simply getting a name for her ailment was a breakthrough in itself.
Besides suffering with Scleroderma, Agnes received a double blow when she was told she also had another rare disease called Myasthenia Gravis, which is an autoimmune neuromuscular disorder, another disease which is not often diagnosed properly. Doctors told her it was extemely rare for a person to have the two diseases. The experts, who were facinated with Agnes’s rare prognosis, decided to treat her, with all expenses paid by the hospital.
“When they went through the tablets I was taking, they stopped many of them. I was on 85mg of steroids a day in addition to all the other tablets I had to take. I even became addicted to the tablets,” she said. “The thing about this evil disease is that the tablets don’t work for long. There are times I would rip up curtains in pain. My daughter had to miss school and my husband had to hide the tablets from me because of my addiction to them,” she said.
Currently, Agnes is a fighter and a survivor, although there are times when her muscles would tremble with pain beyond tolerance and she feels as though she would not be able to make it.
Despite being told that she would be dead at 50, Agnes is now 51. Her symptoms have become worse, and eating is difficult because she also has problems with her oesophagus. Agnes is frightened as she sees the signs on her body that the disease is fast progressing.
“I want 20 more years to live because I really want to see my grandchildren and I want to finish build my house. I know I am lucky because I have a very supportive family,” she said. When asked what she has changed about her lifestyle since her fatal diagnosis, Agnes said she eats everything and is closer to her family.
“I used to be on a strict diet, but now I’m eating everything because I want to enjoy my life. I’m not giving up on any of the foods I enjoy,” she said. “I try to remember how I use to be.
“I can’t be that person again. I want to concentrate on being free, having nothing to think about. I want to sleep at nights without pain and I want to live. I am determined to live because I know I am strong,” she said.