January 28, 2022

January 28, 2022

I’ve mentioned before that one of the things always on my mind was how was I going to live/pay for things. You might be surprised to learn that a work at home artist doesn’t rake in the big bucks. I KNOW. I should have told you to sit down first. Tim’s paycheck (and thus, his short term disability, I assumed, if it ever kicked in*) was automagically deposited into his bank account. When we got married, he already had a bank account, I already had a bank account, so we got a joint account but never really used it much – only to pass money back and forth easily. Otherwise, he paid stuff out of his account and I paid stuff out of my account and it worked. Until it didn’t. Because I didn’t know how to get into his account, and his account was the one with the money that would pay the electricity, the mortgage, his credit card bills. I didn’t want any of those to go into default, so… what to do? When this all started, we assumed (HAH) that he’d be at least able to write out some checks or get online and pay bills by now.za

*The short-term-disability was a background stressor that about ground me into a little nub. Jones Edmunds couldn’t do anything without paperwork from the case worker. Our case worker had neither a last name nor a phone number nor an email, so I had no way to get in touch with her about anything. And I’d just found out about her, because I thought we had a different case worker, the one I told Jones Edmunds to get in touch with, the one I thought was doing a shitty job and was ignoring us. Nope, whoops, she was a different floor case worker… they really should tell you when you start talking to them that they change if you change floors. Fuck. This was stressful. Side note? I didn’t actually get Tim’s short term disability until about …. wait for it …. ABOUT A MONTH AFTER HE DIED. Yeah. That shit was STRESSFUL, let me tell you. I can feel my back seizing up just thinking about it now, and it’s been fucking over for six months.

Don’t stay awake for too long, don’t go to bed
I’ll make a cup of coffee for your head
It’ll get you up and going out of bed

Yeah, I don’t wanna fall asleep, I don’t wanna pass away
I been thinking of our future, ’cause I’ll never see those days
I don’t know why this has happened, but I probably deserve it
I tried to do my best, but you know that I’m not perfect

Anyway. On to my post from that day…

When I left yesterday, they were getting ready to put him back on the vent after two hours off, and then overnight, they took him off for another three hours and he did great! This morning, they were getting ready to take him off for a couple of hours, but he had a huuuuuuuge productive cough and was looking pretty winded after that, so they put him back on and will come back in a little while, maybe around 10:30, when PT comes to sit him up in the chair. Right now he’s napping – that coughing fit cleaned him out but tired him out!

What else today….? I think that’s about it. They want to sit him up for a few hours, want to get him off the vent for a few hours, and want him to pee more. That’s pretty much the plan for the day!

I think it was about this time, maybe in the previous week, that Sharon started talking to me about Caring Bridge, and starting to post there. I was texting family. I was texting close friends. Then I was editing that text for Facebook, and I was slowly getting a handful of non-Facebook friends who wanted to be kept in the loop as well, and I wanted them to know what was going on, trust me. But it was starting to get a bit much, trying to remember who I’d texted that day or who I might have forgotten. I’m sure there are some friends who didn’t hear from me for three days and then got the same text four times in one day, haha. I don’t know why I didn’t come and post here. I guess because I had been thinking of shuttering this blog, so why get started on a whole new story, a whole new life chapter? But now I’m using it again, while mostly for compiling everything I posted about this journey in different places… but it’s also making me want to get back to blogging more, in general. So here we are now.

I been praying for forgiveness, you’ve been praying for my health
When I leave this Earth, hoping you’ll find someone else
‘Cause, yeah, we still young, there’s so much we haven’t done
Getting married, start a family, watch your husband with his son

I wish it could be me, but I won’t make it out this bed
I hope I go to Heaven, so I see you once again
My life was kinda short, but I got so many blessings
Happy you were mine, it sucks that it’s all ending

Oh! Oh! Endocarditis podcasts! I’ve downloaded, like, hours and hours of them and am slogging through, and trust me, some of them are A SLOG. The one I tried to listen to this morning, I was telling some friends, the guy doing it sounded JUST LIKE Nandor from “What we Do in the Shadows” and it was legit impossible to take him seriously. There is a similar theme in the podcasts, which I find really, super interesting, and that’s that… Endocarditis is almost always misdiagnosed at first. It can present as general malaise, low-grade long-term fever, and fatigue. And honestly, who doesn’t have general malaise and fatigue?! Especially these days?! So it’s just fascinating to me that almost every one of these podcasts is saying “do not, especially if you’re an ER doc, take any of these lightly, and if you have any of these odd, light symptoms and no direct cause, always, always do blood cultures and never send your person home.” It seems that the #1 cause of Endo is dirty or shared needles, and sure, while you never really completely 100% know another person, I am reasonably certain Tim does not have a hidden life as an IV drug user. Second leading cause is dental work, and he did have a crown fall off (and he got a temp, and the temp fell off, and he got the permanent put back in) over the course of five or six days back in August (I double-checked the dates yesterday). I’ve talked a lot with the ID (Infectious Disease) people over the course of this, because naturally we’re all curious as heck… but they really think August is too far back in the past for Endo. That it usually shows up in 2-4 weeks, which from the onset of the first time he mentioned “I don’t feel well” (Sunday, December 12th) puts him contracting it November 14-28, if we’re looking at 2-4 weeks. ANYWAY. None of that is super important, I guess, in the grand scheme of things – the doctors have said we might never know where it came from, but the important thing is that we know what it is and how to treat it. But y’all know me and my love of mysteries… I still want to know. I’ll put the couple of podcasts I did like in the comments, if anyone is curious, but honestly the best one (by Sickboy), I don’t know that I want Tim to listen to, because the guy talks about how he left AMA one weekend from the hospital, and I don’t want to give Tim any ideas!

Learning about Endocarditis, and thinking about, pouring over in my head how he might have gotten it… I was treating learning and thinking LIKE A JOB. Every time I would hear a different timeline (two weeks, three days, whatever) I would go over and over what he was doing x-number of days before he started saying he felt weird. But then… he was stoic. Who’s to say that the day he first said he felt weird, really was the first day he felt weird? Maybe it was going on for days before then. Or weeks. And he just never said anything. But that didn’t stop me from obsessing over how he might have gotten it. I still don’t know, and while it doesn’t keep me awake at night, I can go down a rabbit hole of thoughts. Did he contract it while travelling at Thanksgiving? Before? After? Did it have anything to do with burying one of our dogs the day before he left for that Thanksgiving trip? Did it have anything to do with getting our septic tank pumped after GLAM? Did it have anything to do with GLAM? He helped a lot of other vendors, did he scratch his hand or something and…..??? How? How did he get it? Is it something I have to worry about out here? Is it something I have to be on the lookout for? Is it something that I could have prevented? I can only go down that rabbit hole for so long, though. It’s… I’ve dug out that hole. I’ve examined everything, and found nothing. I have no idea how he got it, or when. Unless I go see a medium in Cassadaga, I’ll probably never know. And I have to live with that and not allow it to drive me insane.

Don’t stay awake for too long, don’t go to bed
I’ll make a cup of coffee for your head
It’ll get you up and going out of bed (yeah, ayy, ayy)

I’m happy that you here with me, I’m sorry if I tear up
When me and you were younger, you would always make me cheer up
Taking goofy videos and walking through the park
You would jump into my arms every time you heard a bark

In other news… I am loved, Newt’s new favorite movie is Knives Out, and I got my favorite parking space today.

Happy day that ends in “y” ❤

OK; but here’s a thing that happened that day that I didn’t write about, on Facebook or to family. This was the day that my friend Laura, a notary, came over to the hospital, bringing our mutual friend Shanti to witness as I signed the paperwork that would give me Power of Attorney for Tim. Which meant that I could get into his bank account and pay bills. Which was both a relief (yay, electricity!) and also terribly, terribly stressful. I didn’t want him to get mad at me for taking money from him – this is how brain dead I was, y’all. I more thought he’d be mad at me for trying to get into his account than I thought he’d be glad that I paid the damn bills. This is what stress does to you.

I wound up leaving the hospital a little early that day and driving over to our bank where I could get everything taken care of ASAP. I didn’t want to put it off and then have something happen and not be able to get down there for a few days. No thank you! I think I did pretty well, in that I didn’t cry while I was explaining to the bank person what I was asking for. There’s a process for it so it’s not like she had never done this before, although not a lot. It turned out that her husband works at Shands, so we had a good conversation about how things were run over there and that made it seem a little less… dire.

And with that, I started to pay the bills.

Cuddle in your sheets, sing me sound asleep
And sneak out through your kitchen at exactly 1:03
Sundays, went to church, on Mondays, watched a movie
Soon you’ll be alone, sorry that you have to lose me

Don’t stay awake for too long, don’t go to bed
I’ll make a cup of coffee for your head
It’ll get you up and going out of bed

Lyrics by Lang / Faber / Laus / Klosterman
Death Bed (Coffee for your Head)

If you like the lyrics that I add into these posts, I’m putting them all into a playlist on Spotify that you can follow and listen to if you’d like. I don’t believe you have to have a Spotify account to listen (although you might get ads) (I don’t know how Spotify works) (I stopped paying attention when Napster died).

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