Scoliosis

I was diagnosed as having scoliosis (a sideways "s" curve of the spine) when I was in eighth grade. My parents drove me two and a half hours to Shriner's Hospital in Lexington KY. every six months for two years, for check ups, to see if the condition was worsening.

When I was fifteen the doctors there told them that, from the information they were getting from the x-rays, I would either have to have corrective surgery or spend most of my life in a brace or in bed. After much discussion, we decided on the surgery. I spent months in the hospital. I was there for Thanksgiving, Halloween, and Christmas.

My back had to be stretched, electrodes glued to my scalp, and all of the usual pre-surgery fun. My heart was looked at to be sure I could withstand the stress, and that was when we found out that I have a little hole in my heart. They said it wouldn't bother me until I was "older". The surgery involved fusing eight of my vertebrae. A little piece of my hip was removed and ground into a "cement" which was put between my vertebrae, then hooks, nuts, bolts and long steel rods were attached to hold it in place while the bone healed and fused. I wore a body cast for six months. The rods weren't removed until I was 21.

After the surgery I was told that I couldn't do any repetitive bending, twisting, squatting, leaning, climbing, or lifting. I can't life over 15 pounds. And I was advised that "if it hurts, don't do it". What job could I possibly expect to have with medical advice like that? So I applied for Social Security Disability.

They of course gave me appointments with their doctors, who did not find enough wrong with me to justify granting me disability. I found a lawyer and appealed the decision twice, but I was still denied. The appeals took years, and I had to have an income somehow, so I kept living with my parents and got a Pell grant to go back to college. Now I'm trying to work at home. I paint and I'm putting together a website to try to sell my art. My husband works, but he can barely pay the bills. I don't know if I want to face the government again.

My brother is on Social Security Disability for severe rheumatoid arthritis, but he was in appeals for seven years to get it! And what he receives for all of his trouble isn't much. He lives in low income housing. There's a well known story in my family about my maternal grand mother. She was diagnosed with cancer in her neck. She applied for disability immediately after she found out. The letter saying that she'd been approved arrived three days after she died. Frankly, if I could afford it, I'd seriously consider moving to Canada.