Month: June 2019

Friday Night Panic

tragerstreitLeave a comment

(It’s Friday night. J is over, we’re playing Horizon Zero Dawn. It’s late. We’ve been playing for hours and my back is a little cramped from sitting weird on the bed. Things quickly went sideways.)

we need to move

Ok, Body, we’ll shift a bit.

no, like, we need to move right now. right now. move. need.

Move where?

the chair i don’t give a fuck need to move now it’s kinda hard to breathe

Ok, I’ve asked J to let us out. We’ll sit in the wheelchair for a little bit. He’s gotten up to go to the bathroom. Let’s take our time.

HEY WHY CAN’T WE BREATHE RIGHT NOW

We can, Brain, but it’s always a little hard to catch our breath when trying to scoot across the bed. It’s an awesome bed, holy crap so comfortable, but damn is it hard to move around in. We’re just short of breath from trying to haul ourselves to the edge. It’s ok.

it’s absolutely not ok

OK YAH SERIOUSLY? WE CAN’T GET AIR IN. LIKE AT ALL.

I can reach the breath stack exerciser. Let’s use that to get a proper breath and then we’ll move some more.

it’s not working can’t breathe

WHY IS IT NOT WORKING WHAT’S GOING ON WHY CAN’T WE BREATHE HOLY SHIT

Calm. We’re just tired, let’s get to the edge of the bed and sit up straight. Expand the lungs.

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

Ok, how about the AVAPS machine? It’ll help. It’s designed to breathe when we can’t.

IT WON’T POWER ON WHY WON’T IT POWER ON??? HOLY FUCK!! ARE WE GOING TO DIE RIGHT NOW?! WHY WON’T IT POWER ON? WE ARE DYING!!

No, just..

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

J IS GOING TO COME BACK AND FIND US DEAD ON THE FLOOR IF WE DON’T START BREATHING!! RIGHT NOW!!

Maybe we can call him for help.

not enough breath to yell can’t breathe can’t breathe can’t breathe

WE ARE GOING TO DIE RIGHT NOW

Oh god. We really can’t breathe. What do I do?

You Calm Down. You’re Not Dying.

Um…you’re new. Hello? You are?

Hello. I Am Your Higher Brain.

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

YOU KNOW WHAT IF WE DIE RIGHT NOW IT WOULD TOTALLY BE OKAY IF THIS IS WHAT IT’S GOING TO BE LIKE ALL THE TIME BECAUSE WE CAN’T BREATHE

I have a Higher Brain?

Sure. You Know How When You’re In A Crisis, You Get Really Pragmatic And Don’t Panic But Just Do What Needs Doing? That’s Me. I’m The Opposite of Lizard Brain, Your Primal Instincts.

sssssUP, hOW’SSSS iT gOING?

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

HEY WE SHOULD TOTALLY CALL 911 RIGHT NOW. TRY TO STAND UP, GET SOME AIR IN HERE?? WE ARE GOING TO DIE. LITERALLY DIE.

I’m standing but it isn’t helping!

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

Listen. Calm The Fuck Down. If You Can’t Breathe, You’ll Pass Out. That’s Not Dying. You’ll Have More Than Enough Time For An Ambulance To Arrive. This Is OK.

BUT EVEN IF THEY COME IN TIME THIS IS JUST GOING TO HAPPEN AGAIN AND AGAIN. MAYBE WE SHOULD DIE AND BE DONE WITH IT. THIS IS THE WORST THING THAT’S EVER HAPPENED.

J is here, let’s have him call an ambulance. I’m standing here gasping like a fish and I can’t tell him what’s wrong. Oh no, he’s ..kinda panicking.

Then Don’t You Think We Should Stop?

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

STOP WHAT? DYING?

Panicking. If We Calm Down, We Will Be Able To Breathe.

Wait, is that what’s going on? …Is that why we can’t breathe?

ALS Isn’t A Switch. It’s Gradual. You Don’t Suddenly Lose Use Of Your Hands, Why Would You Suddenly Stop Being Able To Breathe?

Oh. Ohhhhhhhhhhh. Shit. OK. Yeah. J even just asked us if that’s what this is. That’s exactly what’s happening. This is a panic attack. This is the worst panic attack I’ve ever had in my entire life, but it is just a panic attack.

can’t breathe can’t breathe can’t oh…ok..i think i remember how to. ok. gonna try to pull in breaths nice and slow. ok. i think we are ok.

NOT DYING! WOOOOOO!! HEY, OUR BAG JUST CAME UNDONE AND WE ARE SECONDHAND PEEING ALLLLLLLL OVER THE CARPET!

My Job Is Done. Later, Guys.

Cool, only now what do I do about calming J down and dealing with the pee going everywhere?

Not My Department.

HEY IT PROBABLY CAME UNSCREWED A BIT WHILE WE WERE SCOOCHING ACROSS THE BED, YEAH? THAT WAS LUCKY.

Wait, what?

yeah what, how is this helpful?

WE’RE NOT PANICKING ANYMORE. NOW WE’RE WORRIED ABOUT THIS. THAT WAS A USEFUL DISTRACTION. J’S WORRY AND THIS MINOR CRISIS HELPED PULL US OUT OF THE WORST PANIC ATTACK OF OUR LIVES. OH ANDI GUESS HIGHER BRAIN HELPED A BIT. BUT NOW WE CAN BREATHE. HOLY SHIT THAT WAS SCARY.

You make several fair points.

COURSE. THAT’S WHY I’M THE SMART ONE.

…Whatever You Say.

Aftermaths

tragerstreit6 Comments

Well hello. I survived the surgery, it went really well and I am recovering nicely.

…Except for the part where the nurse used chlorhexidine on my hand when starting my IV. Despite the bright red wristband stating I am allergic to chlorhexidine and latex. So that was a weeks worth of itchy fun.

…Except for the part where the IV came out of my hand during surgery so they had to start a new one on my other hand.

…Except for the super nasty UTI that happened and went undiagnosed for a couple of days because I figured it was just irritation from the catheter during surgery. That sucked, really really bad. PROTIP: urine should not be dark and cloudy with red bits floating in it. Get that checked out.

…Except for the doctors really, really not fucking around when they say OxyContin causes constipation. Do not ignore this advice when they tell you to get lots of fiber.

…Except for my hands being unable to fasten and unfasten the elastic bands that keep the bag strapped to my leg. So the bag just kind of kicks it with me in bed.

…Except for the night before last when somehow the bag became unscrewed? And I secondhand peed the bed?

…Except for my body apparently deciding overnight that since I don’t HAVE to use the toilet to pee anymore, getting up off of the toilet is not a thing we get to do. Not easily. Helluva thing to discover at 1 AM due to getting stuck sitting on the toilet for 45 minutes until I finally managed.

All sarcasm and bitterness aside, this thing is fucking amazing. I wore proper underwear for the first time in almost a year. I did not have to put on a pee pad for the first time since October 2017. It’s taking some getting used to, of course – being able to feel balloon inside my bladder has taken some serious adjusting. I also wasn’t really expecting it to be literally a slit cut in my belly with a tube shoved in. There is no connector, no futzy plastic anything, literally a slit with a rubber tube sticking out of it. Thank your lucky stars I’m not about to show that to you. I now have the most hardcore body piercing EVER.

There’s a couple of things I have to do to fully adjust, including hitting up my seamstress friends to help me build some kind of a cover for this thing – so that it doesn’t accidentally become unscrewed again, I don’t get super sweaty having this plastic thing that doesn’t breathe sitting against my skin, and I don’t have to look at a literal bag of urine sitting next to me all the time. I want to get some fat quarters of spooky fabrics and make cute little bags to stick the bag in and disguise it somewhat. Anything to make it look even a little less than exactly what it is.

For now though, I am obscenely grateful for having only to get up once or twice to empty this thing a day, which only involves me getting in the wheelchair and rolling up to the toilet to dump it. I don’t have to transfer all if I really didn’t want to, I have a receptacle to empty the bag into while still sitting in bed. But so far it hasn’t been a problem. I’m not sitting in my own pee right now. I can’t tell you how amazing it feels to be DRY. How awesome it is to be able to wear my cute underwear again. It was worth it. Absolutely no question about it. I’m so glad I did this.

And I’m sure you’re super glad too, because this is hopefully the end of my urine stories. I’m not even gonna make the title a pee pun. You’re welcome.