Wednesday, July 11, 2012

My New Perspective

Picture originally taken 06/2012 at the train station in my town - Modified in Picasa editor
 So if you read my previous post (Hello) you might be curious about what my mysterious life changing diagnosis is. Well that's what I'm going to explain here.

It started a few months ago on April 2, 2012. That was the date of my appointment with the eye doctor. I was able to schedule the appointment after the long and arduous process of getting new health insurance. I had been noticing some very slight vision changes over the past couple of years. This vision issue becoming more evident at a temp job assignment where my boss was asking if I needed glasses. I did get reading glasses but they really didn't help me much.



So back to the morning of April 2nd. I went to the optometrist to get checked out. I was so relieved at the prospect of getting glasses and solving this vision issue. The doctor did the routine examinations on my eyes and asked questions. He told me to wait as he wrote out my prescription. It wasn't for a new pair of glasses but to see a specialist. He said that he saw something in the back of my eyes that needed expert examination.


So I went home and scheduled the appointment with the specialist and they had me come in that afternoon. Later that afternoon I'm waiting nervously to be called in to be examined by the doctor. After waiting for about 15 minutes the nurse called me in and started to do the preliminary eye examination. Then the doctor started to ask me questions and continued with more tests. He showed me a picture of a "normal" eye compared to mine. I was so nervous and didn't really know what I was seeing, I just knew it didn't look good. Then he asked me "You were able to get your driver's license?" the tone of his voice sounded confused. I said yes, then he left the room. That question made me even more nervous, "why wouldn't I be able to get my driver's license?" I got my permit when I was 16 and I'm 27 now.


He came into the room and told me he wanted to perform one more exam. He led me out of that room into another room on the other side of the building. Before he could do the exam I needed to sign of waiver confirming that I wasn't pregnant and understood the procedure. Then a nurse came in to put an IV in my arm. The doctor was behind a camera and told me to look at a blue LED light while the nurse put dye into the IV in my arm. After a few minutes the doctor yelled out "Got It!!" then left the room. 


He returned and said that he came to the conclusion that I had a rare genetic form of juvenile Macular Degeneration called Stargardt's Disease. This disease is what's been causing the changes in my vision and will continue to destroy my central vision until I become severely visually impaired (blind) and at present there is no cure. I left the room, went to the front desk to schedule my follow-up for the following week and left.


I approached my car, sat down, closed the door and broke down in tears. I grabbed my purse and fumbled around looking for my phone to call my mother. She and my Father were out of town and would be coming home (I live with my family) later that night. Trying to fight back my tears and the trembling in my voice, I told her that the doctor's visit didn't go so well. I didn't tell her anymore, but I knew I had worried her. As I drove home with the tears streaming down my face all I could think about was my future eroding away from me. All the things I wanted to do now gone. What's going to be my life now? How am I going to provide for myself? How will I be able to pay my debts? Will I ever get married?  And how long until I go completely blind?


When I got home I told my two younger sisters about my diagnosis and they hugged me. We haven't always been close but I never felt closer to them in that moment in my life. I'm normally the strong one and the one that everyone turns to and now I'm the one in need.


While waiting on my parents to get home. I immediately started researching everything I could find on the disease. The more I researched the more empowered I became. The more accepting I was becoming of my illness. My mindset was "it could be worse." With this new form of comfort I was able to tell my parents without breaking down. Their reaction was what I expected, my father was stoic and silent, my mother was disappointed. 


I went to my room and continued to research online about my diagnosis. I was determined to learn everything I could about my new perspective.


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