So as most of you already know, I was rudely awakened at 3:45am with the arrival of my first roommate. One of only three such roommates I’ve ever had in my life who were not related to me in some way.
It was rude. Bright lights. Outside voices asking about symptoms, the ins and outs of advanced directives, the ordering of snacks, the assemblage of various monitors and beeping apparatus. So. Yeah. No sleep again for this girl. My roomie is really nice. But now I have to hate her extra large because she’s getting out of here at 2pm. Today. Why?!? Why not ME?!? And yes. I am a bad person. But at least I admit it.
I made some progress today, however. I posed what I thought was a perfectly logical and valid point to my neuro attending team. Why in the world would anyone give any human being a mega dose of Solumedrol at midnight? I mean, that practically ensures a sleepless night when sleepless nights are already likely based on my random self inflating bed with a motor located right under where my head lays each night. It’s like a water bed but with air. It gives me straight up motion sickness. But that is neither here nor there. Solumedrol at midnight! I’m no doctor. But that just seems like every kind of bad medical idea anyone’s ever had.
The answer? Well. Because that’s what time the order went in. Oh. Right. That makes total sense then.
My answer? So change the mother humping order you fools! I want my mega roids at 6am and 6pm. Period. There will be one day where I’m on a little extra roid juice, admittedly that’s not ideal. But want to know what’s an even worse idea? Getting pumped full of steroids and also expecting to sleep. Want to know what makes all MS symptoms worse? Two things. The horrible relentless heat. And, lack of proper rest.
Proper rest tonight, in particular, is critical.
Tomorrow I am being evaluated by the PT team. It’s up to them entirely whether or not I get released after my last Solumedrol infusion tomorrow at 6pm OR if they decide I am a danger to myself, they will keep me here until they can find me a room with an in-patient rehab unit.
Oh. Hells no. Hell hell hell NO. I am not allowing that to happen. I’m adamantly opposed to in-patient anything after this debacle. No way. I’ll use my roid induced strength to stage a violent coup resulting in me wobble walking to the nearest exit and flagging me down a damn Uber.
So I’m gonna take as many drugs as I can to help me sleep, even if I have to have family members sneak them in via body cavities, so I am well rested and not quite so wobbly tomorrow for my big test. I’m definitely doing better. I mean I can probably walk to the bathroom myself if they’d just let me. I haven’t thrown up in 24 hours at least. I’m practically an elite athlete right now in MS terms. Maybe ginger ale is some kind of magical life elixir and I just never knew about it before.
I’m making up a new song. It’s by Beth Street and it’s called “No Wobbly” and it goes a little something like this…
I like the way you work it (no wobbly), girl ya got to walk it out. I like the way you work it (no wobbly) girl ya got to balance out. She’s got dirty hair rolling with the phatness. Solumedrol giving her the head fits. Street knowledge by the pound. Seen ’em close up with her face on the ground. But got to get her home stat so no wobbly’s where it’s at.
My most sincere apologies to Blackstreet. But shorty’s got to get home before she loses her damn mind and Wobblies stand between me and that goal. All no wobbly vibes coming my way will be graciously accepted.
I will not be an in-patient anywhere ever again as god is my witness.
So I have to roll now. I have to plan this going away party for my roomie. Drink ALL the ginger ale. Load up on roids. (I was told I may require a xanax after my short term roid loading that has to happen today to get me on my new schedule. That should be interesting.)
And tonight is turkey dinner. I mean who’s really winning here? Turkeys are great walkers! It’s gotta be a good sign.
#nowobblies
Sing it with me, folks. The puffy village is calling my name and I must get back to my precious before I go all Gollum on some PT hobbits tomorrow.
Miesa Murphy
July 23, 2017 2:36 pmAre you out of that hell hole yet?
bethnigro0212@gmail.com
July 23, 2017 2:42 pmNope. Still in the seventh pit of hell. Fingers crossed I get sprung tomorrow. But I have to be approved by the PT people to be released. Damn I hope they don’t try to send me to inpatient PT. That was the threat. I don’t like that idea at all. Not. One. Bit. ?
Dawn
July 23, 2017 2:45 pmGreat post seems so wrong… wonderful insight into this awful disease, yes, that’s a bit better. I’m available, just like my sissy, if you ever need anything. I know that sounds trite, but is is sincere as it gets. Love you!
bethnigro0212@gmail.com
July 23, 2017 2:48 pmLove you back!! ❤️❤️❤️
Julia Harden
July 23, 2017 3:39 pmOh no Beth!!! So sorry to read about your horrible vertigo and subsequent incarceration. Sending you lots of good wishes and unwobbly walking vibes but if in doubt just say someone will stay with you xx
bethnigro0212@gmail.com
July 24, 2017 1:39 amTotally my plan! I will beg, steal, borrow and lie my ass off to get out of here tomorrow by hook or by crook. Trust this. I’m ready for them. Though I’m actually not sleeping, as is typical, I’m gonna fake the shit out of PT evaluation tomorrow. ????