Being In the Hospital is Exhausting

What sparked the 24 hour ER visit? The lack of response from my neurologist. It was only after I threw a desperately civilized hissy fit and spoke of getting other big cheese department heads (specifically my hematologist) involved that there was rapid response.

I’d become seriously mega desperate for real help. I take my rare bloody-ass disease seriously. I understand now that I’m never gonna be able to walk a few miles, hike a woodland trail or easily climb the big hill leading up to Brattleboro’s shopping district again—got it. BUT If at all possible I’d like to stroll down the seawall once more, even with brace on and a walker.

So, my hematologist and neurologist got together and ordered up a few zillion tests for me to go through during my Olympic level ER stay. I had an ultra sound (no new clots YEA!), blood was taken (I requested that they leave some for me—which they did) and finally, an MRI. Yes, the dreaded claustrophobia machine that I thought I’d never be able to get in again. I did. Turns out, with enough exhausting time spent in ER Land, a few tabs of Atavan and some good ole ‘Well, got no choice now so I gotta buck up and buckeroo this sucker,’ I was able to get through it without freaking out.

Good thing too. We got to the source of my increasing, devastating weakness. Remember that leviathan that was twisting around my thoracic spine? Yeah, the one Doc Barker couldn’t remove all of without turning me into a quadriplegic. The motherfucker’s back—maybe not in full but baby’s grown. I go in for surgery on Tuesday. Yeah, Three days from now.

Actually, the docs and nurses wanted me to stay in hospital until Tuesday’s big event. That’d mean I’d be spending the better part of four days with massively interrupted sleep, limited exercise (not that I can do much now anyway), lousy food and NO Coco. Yes, Jen, Ten, and Oni could visit but, shit, a hospital visit is NOT the same as living together. Their reasoning? They wanted to keep me safe.

Hah! Clearly they had NO clue of what Valhalla life is like. Ten’s had the joint kitted out with a billion grab bars, I can’t leave the bed without at least one spotter. He doesn’t leave the house (for any extended period of time) unless Jen and/or Oni are here to babysit me.He gets me dressed each day. Ten and/or Jen put my brace and ugly sneakers on for me whenever I leave the bed. I’m fucking Cinderella here.

Conversely, the very nice and otherwise competent nurses, who took me to the can one night, neglected to put my brace and shoes on (I told them I needed these on), so I fell. Not badly but a fall nonetheless.

I explained to my morning nurse that I would actually be safer at home. She passed the word on to the docs (not for the first time). They eventually, came in and made it so. Goddamnit, I was in tears. After Tuesday, I’ll be gone a month minimum again. Before this, I don’t want to be fiddling my toes (right foot only) sitting in a hospital bed without my damn cat! Dammit.

This surgery seems like it’ll be a smaller one, just a trim perhaps? It’s not scheduled to begin until noon—so maybe there are fewer risks. This has all moved so fast that I’ve not even had a chance to speak with my surgeon, the lovely and talented Doc  Coumans. It’s been more than 20 years now since Fred saved me from being a quadriplegic. I’m counting on advancements in techniques and shit since then.

So, I’m happily home and fucking exhausted.