March 11, 2014

Did You Drive Here Today?


April 2001
I was having constant headaches and really becoming so sensitive to light, especially the sun. One morning I was driving to school in the rain (it was still dark out) and hit the curb (median) and blew a tire. The glare was just killing me. I never did go for that check up to see if I needed a new script, and you know driving was beginning to make me nervous. A few months go by...
June 2001
The school I was teaching Music at just laid me off - they had budget cuts of course. I was feeling pretty depressed to begin with, starting over with the whole interview process. Then I decided, ok, I will make an appointment with my husband's grandma's eye doctor, just for a routine visit. 
August 2001
I drove myself to his office in South Buffalo and walked in with the notion of needing a new pair of glasses. What happened next was unthinkable….
The doctor looks at my eyes and has me read the eye chart on the wall. I can only read the E at the top. He looked at me and said try again. I said, "I can't read anything but the E", seriously. I even surprised myself and was in a bit of disbelief. He then looked at my eyes through his machine, tested me for glaucoma with the puff of air, and then sat back with a look of complete shock and disdain. 
He said, "Did you drive here today? By yourself?" I replied, "Yeah, why?"  He then shook his head and said, "You should not be driving - especially alone" and he sighed.  I didn't quite comprehend what he was saying. I said, "Are my eyes THAT bad?" He replied, "You need to call someone to come get you and I am going to call a retinal specialist to see you today." 
About 30 minutes later, my mom and Billy showed up and we were told to go to see Dr. Steven Awner, a pediatric retinal specialist who also deals with adults. So, I rode with her overt Our Lady of Victory Hospital who had an eye center at the time (they are now closed). I was examined by Dr. Awner, who then asked for a second opinion by Dr. Olitsky, another specialist. Then….after waiting for a bit, eyes dilated good with numbing drops and all, he said you need to see Dr. Sara Notaro (now Reitz) who was another specialist. 
At this point my eyes were a bit tired and we were already there for a few hours. She made me take a visual field test, where I had to follow a little light and beep when I would see it. It was up against a white background in a kind of box. Then she wanted pictures of my retinas so they did what they call a Fluorescein angiography, where they inject fluorescent dye to make your retinas light up so to speak. They she took some CT scans called ocular scans of my eyes to see if any damage was done and war was going on. 
After hours of testing, she sat down for a consult with my parents and me. The diagnosis….not good. She said basically I am considered legally blind which is when your vision is less than 20/200 in both eyes. Mine was 20/200 in one eye and 20/400 in the other. She said I had some type of retinal degeneration and that it is a type of disease where it slowly decreases central vision. She suspected maybe Cone Dystrophy but needed more tests. 
Later that month, I had an ERG (Electroretinography), which measure the activity in the retina and sees if there is any abnormal function. The test is quite painful and uncomfortable to say the least. I had to go to ECMC for this test, for at the time, it was the only facility that had the machine to perform this diagnostic test. 
I then had a follow up with her and she said that the activity measured to be normal, but that clearly was not what I was seeing. She ordered another test. 
I didn't go for that test until November….results….the same. She did however, due to all other test results, deemed me to have Cone Dystrophy, which affects mostly the cones in your retina. 
As the news sunk in, it became more apparent that my career as a Music teacher might suffer. As a performer, it would be tough to read my music and continue practicing. I guess the most devastating ewe to me, was that I could no longer drive and that I had to pull myself off the road. I had to sell my new little Escort Sport and I felt so defeated. Robbed of my independence, not to mention possibly my career as a musician. Not to mention, the medical bills came in for all my testing, and little did I know, the school had cut off my health insurance benefits. They had told me they would go through the summer, so the money I got from selling my car I had to use to pay my bills.  Just so annoying and depressing. Now what?



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