Thursday, December 6, 2012

Lupus - a brief look at its beginnings in me

the perfect storm

I believe the early 1960’s created a perfect storm and environment to develop Lupus symptoms when I was 12 years old.

When I was 12 (Aug 1963), I woke in the morning to discover my whole body was covered in weeping sores. Some of them had dried and so my pj’s were stuck to my body. Mom filled a tub with lukewarm water and baking soda. I soaked for a while until my jammies came loose and the itching subsided. The doctor thought it was a viral infection but could never pin it down. From that time forward, I had episodes of severe fatigue, sore joints, and low-grade fever. Often my body was covered in bruises, which are very hard to get when one is flaked out on the couch for weeks at a time.

The next part of the triad came in Dec 1964 when I was gang raped by four men in the park on the way home from school. This event completely changed my personality and no one could understand what was happening to me, least of all me. Why had I flipped literally overnight? I had mentally blocked the event for a few years but that didn’t seem to matter; it still changed me. I became completely self-destructive – took up smoking, began drinking alcohol, and started to run around with boys. Three months later, I tried to commit suicide because I didn’t even recognize myself anymore. The cops pulled me down from the bridge railing and I went into the system, becoming a foster child to a minister and his wife. I was there for three and a half years.

In 1965, I was lying in the backyard of my foster home and fell asleep, burning my back and legs to a crisp. Apparently, I was not responsive and was taken to the Royal Columbian Hospital to recover.

In 1967, I was diagnosed with Mono due to the symptoms I was experiencing (tired, sore throat, swollen glands) and had to recover at home for a few months.

From 1970 to 1972, I lost four little boy babies at around four months each. When I was diagnosed with Lupus in 1998 by Dr. L. Jones in Port Coquitlam, it was this fact and my history of pain and fatigue that tipped him off to the Lupus. The medical tests that followed confirmed his suspicions. When he told me it was the disease of 1,000 faces, I immediately forgave the dozens of doctors I’d seen over the years. It wasn’t all in my head after all.

I think that all of the stress of those early years, the infections, and over-exposure to the UV rays caused my body to turn on itself and develop this cruel disease.

Throughout my life, I’ve had long stretches of being quite ill and not able to get around very well and really not wanting to as I was in so much pain and was so very tired. At other times, I was thoroughly ensconced in life, enjoying family, friends, work, and play. It’s a maddening disease as it is hard to make and follow through with plans that are made. All this being said, I’d rather have my issues than some of the other ones I see folks struggling with today.

© 2012 Lyn E. Ayre, Ph.D.

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