SHE IS ALIVE!

Had my two big back to back doc appointments this week and the good news is that I’m getting old. That is, of course, also the not so awesome news. I’m now increasingly suffering the slings and arrows of maybe not so outrageous decrepitude. More or less. Kinda, sorta. All things considered and shit.

That swelling in my ankle? It’s something about my veins. Or Venus or Venus de Milo or some such. Dunno, I was kind of distracted by my new PCP’s flagrant youth and his astounding resemblance to a younger, dewy version of Matthew McConaughey (who is, by the by, 55 years old now – sheesh!).

Anyway, ankle diagnosis – something, something, something, venous insufficiency, neurogenic dependent edema and sensory loss secondary to peripheral neuropathy or autonomic dysfunction associated with NF2, or secondary lymphedema. Nothing to write home about. 

So, I’m getting compression socks (joy – those things are SO fucking homely!), changing up and expanding my workout routine, going up a half size on my damn sneaks and otherwise keeping an eye on things. I’m in no pain and my strength is unaffected – I’m good to go.

Jen and I came up with a great idea to make my walks a little easier. Our driveway and the sidewalk leading down to the seawall are tremendously uneven. They’re broken up by the tree roots who’ve triumphantly broken free of the cement and asphalt. While I totally applaud the trees’ persistence and success over man, the fucked up path is a wicked fall risk for yours balance-impaired truly. 

The solution? A human sized hamster ball that’s also a hovercraft. My running, within the ball, would generate electricity to power fans which would create a cushion of air between the ball and uneven ground. Once I reach the smooth surface of the seawall path, I could retract the fans and just walk (still within my hamster ball). This would also eliminate the problem of being in the same airspace as potential COVID and other assorted disease carriers.

Fab notion, eh?! (NB: Hamster balls are NOT a good idea for hamsters!)

When I met with Plotkin, we briefly talked about Michie, who had once been a patient of his (she switched to another neurologist in the same department at some point). She came up in part because I wanted to let him know that she’s gone but also because he always asks about my moods – my emotional health. This is an important aspect of managing a nasty-ass disease like NF2. If I’m sad, angry or otherwise in my feels all the time, I’m not doing all the things to make life with this curse happy, easier or, at least, less stupid, painful, and debilitating.

Naturally, Doc P couldn’t say much about Michie but he did tell me that my case, my curse, is not at the same level as hers was. I’m relieved AND I feel guilty about that relief. Of course I do, I was raised Catholic. I feel guilt about just about everything whether it makes any damn sense or not – usually it doesn’t.

Godzilla? Grim Reaper?
…close enough.

He also said that it’s normal to fear you’re next when another NF2 sufferer, a friend croaks. This, with Michie, is the first time I’ve honestly had the look-over-my-shoulder-to-see-if-the-Reaper-was-behind-me vibe. 

Anyway, Plotkin gave me a clean (for me) bill of health, has me down for another zillion MRIs (six months from now though), and talked with me about a test run for some new closed captioning eyeglasses. Something like this, I believe. He’s signing me up!

And once again, I’ve got Dylan playing on the old internal turntable. This morning’s selection is, unsurprisingly, It’s Alright, Ma (I’m Only Bleeding), specifically the line:

…he not busy being born is busy dying 

‘scuse me now – I gotta get busy being born...get busy staying in the process of being born? EWWWWWWW, sounds messy!