Surreal

Man, what even IS my life anymore.

I got a voice mail the day after that last post from my awesome nurse. “Hi, I read your blog, and I have some ideas about the AVAPS.”

Uhhhhh..hi there. I forget that people read this, sometimes. I have the best freaking care team ever, you guys. I got contacted from three different folks to ABSOLUTELY ASSURE ME that the machine would get paid for, the rules are more bendy for folks with ALS so please don’t stress about it. And then thanks to Nurse Awesome, I was contacted yesterday by Providence Respiratory to adjust my settings remotely to ramp that sucker down.

OMG SO MUCH BETTER GUYS.

It had previously been forcing air down my throat so hard my ears were popping. Seriously. I can handle it now. I might even get compliance on my own without my awesome peeps having to argue for leeway. It’s still not exactly comfortable, but it’s so much more manageable.

Thursday was noooooooot a good day, there were a million things going wrong, including hurting myself by trying to lean over in the chair to pull something out from under my wheels. I felt and heard something go POP, and owowowowowow. Not a crack, though, and breathing was still ok, so I just rode it out and after a few days’ soreness I’m alright. Then Thursday night someone said something a bit unkind and I kinda completely lost my shit for awhile. Occasionally there’s a trigger and I mourn the person I don’t get to become. Five years ago, I had my very own house, I had just lost a lot of weight and was fitting in all my cute clothes again, I was going to school to further my career, I had all my shit sorted out and my life was pretty fucking great, actually. Thursday night I let myself grieve for her, because that future is dead, and I let myself be angry at people who say really stupid shit.

Friday I had the distinct displeasure of taking the sodding van in for repair. It cost me $919. I’m extremely grateful to Intel for their short term disability benefit easing me out of the workforce, because fortunately I HAVE that money. For now. Although now the brake light’s coming on. So that’ll be fun.

Saturday I did nothing but sleep and fuck around on the internet.

Sunday I did something SUPER COOL but is not my story to tell, so just believe me when I say it was amazing.

This morning my cat woke me up because I could hear him chewing on plastic. When I located him, he had a huge long piece of cellophane coming out of his mouth, and was choking on it a little. I could not get him to come to me for ANYTHING, and when I stood up and tried to get to him, of course he backed away. I took another step towards him and fell right on my ass. It didn’t hurt, even though I’ve kinda got no muscle in my ass to cushion the fall anymore, but it knocked a bit of breath away.

And then since I was on the floor, my fucking cat decided to come check me out and I was able to get the plastic out of his mouth.

Motherfucker.

The fall didn’t hurt, but getting off the floor did. I wound up sitting on my foot rests and using that wheelchair lift feature to get myself up off the ground, but even with the grab bar on my bed, the chair to push off of, and my walker on standby, I wasn’t able to get over up on the bed. I had to lower myself back to the floor and let myself catch my breath before I tried again, and was very, very grateful to the Depends company for their fine product and my forethought to start wearing them to bed otherwise I’d have exacerbated my situation by having to catch my breath sitting in a puddle.

Welcome to the TMI Show.

Now, I have my awesome watch, so I was never stranded. I always had options. I’m just stubborn as fuck. I texted J but he was not immediately responding, so I tried the wheelchair lift again, and used it to ALSO steer myself right up against the bed this time, and was able to get in bed. And then after catching my breath, getting up to go to the bathroom to change my disposable shorts. I cried for like half a second, but realistically I know this is definitely going to happen again. Probably not the cat part, but there will definitely be another fall, and next time I very probably will not be able to get myself up. It’s twelve hours later and even though I’ve been in bed all day I’m still exhausted from the ordeal. So that sucks. If I hadn’t had such a huge meltdown Thursday, it would have happened today.

So that’s my life, this last week. Kinda a shit show, but there were definitely some good bits in there.

Also I wanna restate that my care team is amazing, especially my nurse. <3

Awww yeah, she’s a Sleep Machine!

So I got the CPAP machine yesterday! It’s pretty. It’s The AirSense 10 Autoset by ResMed. Or maybe the Elite. I don’t remember. It’s a lot smaller than I expected it to be. The sleep study put this expectation in my brain that it was going to be this massive machine next to my head, when it turned out to be the size of an alarm clock. With a hose.

That heats up!

My respiratory therapist (I have a respiratory therapist! I forget how many that makes in my Medical Posse) showed me how everything works, how to run the morning report, how to clean everything, how often to clean it, when to reorder supplies. And then I signed a contract that said yes I promise I will use this at least 21 days over the next 30 to show I’m SRS BZNS about CPAPpage. No, really, I had to do that. Or pay for the whole thing out of pocket ($1900!) after 30 days or return it to Providence. Weird. And then we fitted me for a mask, and I got one called “Wisp” because it was less strappy-constraint around my noggin. I’m at a relatively low pressure setting, I guess, which is good for beginners. Yay for me. The whole thing fits into a small case, like, I had school binders bigger than this thing, probably. I could put a vandalized Pee-Chee in here and feel nostalgic. But for now it’s just a softcover case, totally would fit in my backpack like it ain’t no thang when I travel.

The first night was challenging as I expected. I took an ambien to make sure I was able to sleep at all. It took a long time to stop feeling like I was suffocating and forcing myself to breathe out. The cats flipped out. I knew they would. When I laid down to sleep, Molly crawled up my torso like she was stalking a beast, pupils wide as saucers, jumping away when I touched her. Ianto was having NONE of that thank you very much, and slept in the hallway, and Parmesan, well. He’s 22 years old. He settled in next to my face as usual. And the awesome thing about the CPAP is that he was flopped over on my face and I could still breathe for a change! It was like…kitty scuba diving. With the only fishes being the ones on his breath. That I couldn’t smell. Because CPAP! It’s MAGIC!

I slept pretty hard, but I don’t know if that was CPAPpage or Ambien-ce. I took the mask off at like, 5:30, I think. I don’t remember. I remember being glad it has auto shutoff. My morning report said I used it for 7 hours and had an average of .4 ‘incidents’ an hour. Which I guess meant I stopped breathing? All of this will be sent to my doctor. By the built-in cell modem. Which I will be honest? Freaks me out a little. It’s like, Big Brother is Watching You Sleep. Fantastic if it helps, but it still feels like I’ve got a little snitch on my bedside. With a heated coil tube and a humidifier. Snitches…have switches?

I don’t even know where I was going with that.

ANYWAY. So I have this thing now, and it’s probably going to be part of my life from here out. Until it’s swapped out with a different breathing machine, I expect. It will eventually become routine to me. I can teach myself to get used to this.

Not sure about the cats, though.