A Day in the Life of Recovery

The strange thing about my condition is how suddenly it changed everything about me and my daily experience. Four months ago, though I was sick, you wouldn’t have known it—unless you happened to notice me nodding off in class, day after day, after consistent eight or nine-hour nights of sleep—or if you noticed the ever-increasing amount of dents in my car from suddenly not being able to tell where the edges of my car were. But now, with one look at me trying to walk across a room, it’s extremely obvious that something is going in my brain that I have no control over. Welcome to my new world of PANDAS.

One of the hardest things about recovery is learning to be honest with yourself by being willing to admit how hard everything still is. It’s often difficult for me to explain to my friends and family just how challenging each day can be, so I decided that instead of explaining, I would tell you about what it takes to get through a typical day…

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Is Looking at My Medical Records Really Too Much to Ask?

This week, I’m going to be seeing three neurologists including one PANDAS specialist. As you can imagine, I’m very nervous but also excited about the possibility of figuring out what has gone on with me for the past eight years. In order to prepare for the appointments, I’ve been trying to get my hands on my own medical records for awhile—with little success.  Forgive me, because I need to vent… Continue reading “Is Looking at My Medical Records Really Too Much to Ask?”

“You’re Just Tired”

So I tried Xyrem for a week, and I did sleep like a baby. It was actually wonderful—I would wake up in the morning feeling completely rested and not feeling like I needed twenty more hours of sleep. I hadn’t felt that way for eight years. But it upset my stomach so badly that I lost even more weight because I was unable to eat anything. I’m down to a hundred pounds. I was around 111 before this summer…

My doctor is just plain flummoxed by my strange reactions to meds, so he made me stop everything over the weekend—even my anti-depressant. As would be expected, I felt horrible in every way. But one of the worst parts was what someone said to me about how I would be off my meds: Continue reading ““You’re Just Tired””

De(pressed)ad Again…

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.

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Why I Can’t Stand All These Meds

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…*

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My 8 Year Journey Into the Wormhole of Rare Diseases

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”