Tuesday, June 2, 2009

My Life on CRaPS

I am starting to think my body has a mind of it's own. I always had soooo many dreams as a kid. When I was in 7th grade a week after my birthday I was walking down the hall and started feeling weird and before I knew it I was on the ground being shook by my math teacher. I had fainted. The called a squad but when they Came they said all seemed fine. This went on and on for months. I would faint 2 sometimes 3 times a day and sometimes they wouldn't call the squad. My fellow students and worst of all the adults and staff at my middle school started saying I was faking it. They thought that I was just a lost little girl trying to get a lot of attention. I even went blind one day and the nurse told me to walk around the office to probe that i was really blind. I walked into a sharp edged table and put a gash in my knee. She still didn't believe me.This went on for 7 months,no help nothing but judgments. I finally went to a neurologist who asked my mom if she knew my pituitary gland was being squished by fluid. He told us to go to a specialist in the matter and she finally told me what I had. Pseudo Tumor Ceribri which is a build up of fluid in the spinal Column and the brain. In my case the fluid was trying to get out and it was trying to go out my optic nerves. I ended up losing my side vision (peripheral) and the pressure on my pituitary stunted my growth and messed with my hormones. I finally got that under control, there isn't a cure for that either but there is a high rate of remission. I went in and out 2 times finally in for a while. Flash forward to 2008 April. I was working at Build a bear and I had just thought about quitting because I went out and got my nose pierced and they threatened my job if i didn't take it out. I almost wished I had walked away but hey....anyways. I was taking out the trash at work and my coworker was behind me and I was pulling the 1/2 ton metal trash kart down a small wheelchair ramp. I found out after that the kart was broken and I had been trained to pull a broken kart....big no no. It went rouge and ran into the back of my left heel....I blacked out and it felt like it hit a nerve and I almost threw up. I hobbled back after throwing the trash out.....blood in my shoe wasn't customer friendly so the let me go home but I went to Urgent Kare. They said i sprained it and might got something else and to follow up with a different Dr. So I did. Went to a mouse of a Dr. he put me in a walking boot. My foot started hurting....more then I would think a torn ligament and a sprain would be. I kept telling the Dr. but he said it was normal. We went back after 14 weeks of being in this boot. He thought I was just being a big baby. He told me that I needed to get out of the boot and into a brace.....he went to look at the swelling in my foot and he barely touched it and i flinched and pulled away. He finally said.....it might be RSD...but nothing was really said after. I stayed pretty laid up for about 5 months. No one said RSD again to me and I thought nothing of it. We did different tests and they all said nothing. I wasn't getting a paycheck so I was stuck at home with my parents. About the 7th month he finally said that I really had RSD. I was so pissed and frustrated by this time that I wanted to spit. My mom talked to a Dr. friend of hers and he pointed us in the direction of the best RSD Dr. in Ohio and he was 10 miles from my House. Dr. Deshpande worked real hard with me. We tried a lot of different things. He did a Sympthetic Nerve Block and did different narcotics. I ended up in the hospital after that with double the pain now. Nothing really helped. So about December he finally said that I should get a Lumbar Stimulator. It is a machine that sends out electronic impulses in hopes that those pulses will block the pain getting to my brain.....It works to a degree but I still got about 50 to 80% pain most days. I got it in January and now it is June and they are talking bout taking it out and starting at square one. My physical therpy dropped me till my dr. figures out what the future will bring. I am praying it will be a lot brighter then it is today. I am one of the lucky few to find out RSD in its first year.


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