I don’t even know where to start since I last wrote. I seriously think I’m going crazy.
The other night, I got in a really bad way. During the day, I would just sit down and stare into space, because that was all I could do. I had no concentration whatsoever. Whenever I tried to do homework, I found myself just staring, thinking about nothing. I tried to make myself focus, but then I’d just start staring again before I realized I was doing it.
So, my Xyrem finally came.
For my non-narcoleptic readers, Xyrem is one of the meds used to treat narcolepsy and cataplexy, but it’s a controlled substance with only one pharmacy in the US that makes it. After getting a prescription from the doctor, I had to go through two weeks of phone calls from nurses and pharmacists at that pharmacy. The best part of one conversation went like this:
Nurse: Do you have cataplexy in addition to narcolepsy?
Me: *falls to the ground…*
Hello world! Welcome to my recovery blog.
I’m a teenager that has Narcolepsy with Cataplexy, OCD, and another undiagnosed illness that is suspected to be PANS (Pediatric Acute Neuropsychiatric Syndrome) or PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus).
I’m writing this blog to raise awareness for my conditions and hopefully, to inspire others to not give up. There may or may not be a cure for my illness, but I’m on a journey to take back my life, and this blog is for recording that journey.
Once upon a time, I was completely healthy and fit. But in the summer of 2006, I came down with a mystery illness that tore apart everything I knew. Continue reading “My 8 Year Journey Into the Wormhole of Rare Diseases”
