About a year later with more of a tremor and something also now effecting my speech I sought out a neurologist. I got no answers. So I found another neurologist who seemed more interested in helping me. I was misdiagnosed and pumped full of medicine I didn't need that didn't even help.
As I continued to dutifully attend my appointments my tremor had spread. Now not only did my hands shake but now my legs and head as well. I had started choking on things. My neurologist in Syracuse wasn't cutting the mustard. Then someone near and dear suggested the movement center in Rochester.
Work got increasingly difficult. My bosses were very tolerant of a waitress who could barely serve coffee in a diner but as a result I couldn't work anywhere but the counter. I got a second job delivering flowers for the most wonderful people!! Who doesn't love bringing sunshine to someone everyday!
Finally I made it to Rochester after a 4 month wait! They were absolutely determined to find answers for me! I was ecstatic! I've been a lab rat since January. My doctors pulled me out of work in early March. I had to give up two jobs I loved to focus on my health. I'll receive my first round of Botox in my neck this week. I've had extensive blood work, MRIs, Ct scans, sonograms, and a spinal tap. I have to have genetic testing next week and attend 2 additional doctors appointments as well.
I applied for disability and was denied despite my medical condition. Since I appealed their decision it can take up to 2 years for a hearing. I was denied unemployment and temporary assistance offered me $300/month if I put a lean on my house.
I have a 16 year old beautiful daughter. I'm doing everything in my power to keep things going for us. My family is my rock but even they can only do so much. Funds are depleted quickly when you haven't worked in 5 months and your family does everything they can.
As I continue to fight this uphill battle of the body and the broken system I appreciate everyone who at least takes the time to read this.
All my best to you and yours,
- Tracy Deyo
- Molly Pepe
- Amy Farino
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