Posted on October 29, 2013
STOP MOVING! Megan gets so frustrated with me every morning. I’d also yell at her to stop moving if she would ever actually move before dawn. It’s annoying. There comes a time when I’m starting to wake up when I can no longer be still. Infuriatingly enough, this usually happens before it’s light outside.
The thing is, I’m not talking about restlessness. I’m talking about the need to move so that I don’t cut off circulation. If I stay in any position for more than a few moments, bye bye blood. Once I readjust, circulation restores, my body thanking me by stabbing me with pins and f’n needles. It’s fantastically uncomfortable. And it not only drives me nuts, it drives my significant other nuts. And oh, she lets me know it (in such sweet ways, ha!).
I have a tendency to write my Neurologist (SuperNeuro) about the mundane details of my life. I even sent this in an email to her a while back:
“I still sort of think there’s a simple explanation to all of this, and then get frustrated because you’re so smart, so it’s like what’s taking you so long? Like how many things do I have to tell you before I tell you the right combination of things?”
So consider me impressed when she suggested I should get a genetic test done for a disorder called HNPP (Hereditary Neuropathy with Liability to Pressure Palsies). I had never heard of it, so I ran home and Googled it (Google is really smart – I bet she’d be Valedictorian).
What I learned is that when someone has HNPP, they are susceptible to nerve injury from the most mundane activities. Take sitting on a bar stool for instance. The average person wouldn’t have to switch positions much. They may occasionally feel discomfort from where their legs draped over the seat, but they’re fine to sit there for a relaxing afternoon or a long drunken night. On the other hand, someone with HNPP would have to frequently move due to blood loss and nerve pressure on the bottom of the thigh where their legs drape over. So you’d think they want to stand. But they probably have leg weakness and drop foot from all of the nerve damage, so standing doesn’t seem like much fun. You could stick them in a bed… but this is where I’ll just remind you of the first paragraph.
Anyway… when I read this, I felt like SuperNeuro was really hearing everything I had been saying. I don’t frequently talk about the blood loss. The funny thing is, when I read this, I immediately thought of my dad. He totes has HNPP and he totes gave that shit to me. Thanks dad.
I haven’t gotten the test yet. I’m going to write another blog post one day about the absurdity of Genetic Testing/Insurance insanity. But I’d be surprised if I didn’t have this. It’s also very likely that if I had HNPP, it could have been exacerbated by an ‘event’. I’ll get into ‘events’ later. I guarantee this event is no party you would want to attend. Hint: it involves needles.
So I picked up the phone and called my dad about this, and we had an interesting conversation. What we’re discovering is sometimes you don’t realize something that you’ve always had or something that has always felt normal to you, may not actually be normal. My desire to do the robot upon meeting strangers – not normal. My urge to clap with one hand – not normal. I wonder if there are any genetic tests for these.
Here is a photo of me with my legs draping over something. I felt some of my million plus readers may need a visual aid. Oh, and that’s Hanky, my son.