By the time I had finished with Voc. Rehab., I had been to Iowa City to the genetic lab. I had many tests and my health insurance had run out because I was not working. I asked them where to get help to pay the bills and they directed me to Polk County Human Services. I went there and was told I possessed too much to recieve any help. Strike one. So the only thing I could do was throw the bills on my credit card.
The R.A. doctor had told me to file for S.S., I was denied. Strike two. So I started throwing my groceries on my credit card.
The R.A. doctor also suggested that work had a factor in my injuries. Also the genetics specialists agreed.
So I had to hire an attorney and file a lawsuit. All this was completely new to me. I had never sued anyone....never had too. Then the doctor asked if I had hired an attorney for S.S.? This was getting ridiculous. I had three specialists saying I needed to get Social Security yet I had to pay a friggin lawyer to get it? When I found a lawyer for S.S. he matter of factly said when he would get it for me. Then why did I get turned down twice?
All this is going on while you are feeling bad physically, then the feeling of being an outcast sets in. I actually thought I could end up a homeless person. My feelings towards some of them changed because now I see how it could happen.
I had disability insurance on my pickup loan....guess what. They denied my claim. Strike three. Next batter. My union had disability insurance but it hinged on getting Social Security. Steeeerike!
No income for a year and a half, no help whatsoever. Credit card ballooning. This was getting worse by the hour. The worst thing about it is there is nothing you can do but wait and go further into depression. This was the nightmare, the help that was supposed to be there was not there. Excuse me, didn't I pay my taxes or something?
I understand Social Security balking on some claims but I could not change my genetic makeup or pay three specialists to lie. I mean come on people get real. Even Voc. Rehab. could not find me anything.
Life with Hunter's Syndrome
I am going to try and describe what the genetic problem does to a person. Hopefully, I will help someone in advising how to deal with the physical aspects......also some of the emotional and economic things that will affect anyone that has to get help. These physical problems definitely will change and alter your lifestyle. I am not going to get technical because with all the technical input from all the doctors I have seen never meant anything to me.(I know they are trying to help but I need layman's terms.) All I knew is I was way too young to be feeling this way.
Hunter's Syndrome is a rare disease in which some enzymes are missing. While most people's joints heal the basic ingredient to heal is missing. In other words you age much faster than a normal person. It has affected my hearing, eyesight and many other parts of the body. Actually I am lucky too have a such a mild case as I am now 46 years old.
The story starts at the bottom post and works its way up.
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