March 6, 2022

We’re getting near the end, here, and I don’t really know what to say now any more than I did then. I think by this point I had given up hope, although I’m not sure if I was admitting it to myself. Yet.

That some bright morning when this life is over
I’ll fly away (fly away, fly away)
To that land on God’s celestial shore
I’ll fly away (fly away, fly away)

Not much change for Tim from yesterday, either in activity or things happening at Select. I turned his TV back to news and his eyes are open now, but I don’t know how much of it he’s really following – it could just be colors and movement. He’s still on light tube feeds, but his nausea appears to be taking a vacation, so that’s good. He’s still having some other GI issues, though. I did some PT with him yesterday and I’ll do a little more today, since Therapies don’t work on the weekends. Any range of motion helps, right?

Other than that, not much is going on. They’re getting ready to lower his blood pressure medication a little, to evaluate how he does on it (they want him totally off it, but it has to go down and go down, not just get turned off). I don’t really understand how someone can have both a high heart rate AND low blood pressure, but that’s why I’m not the doctor, I guess. 😉

Other than that….?

I’ll fly away, o glory
I’ll fly away in the morning
When I die, Hallelujah, bye and bye
I’ll fly away (fly away, fly away)

The last of the goodies that a friend sent to me for the Valets came in yesterday, so tomorrow I’ll figure out how many paper bags I can put them in (it looks like there’s maybe enough for three bags), and then bring in, like, one a week.

Also in? The last of the things I needed to put together a gift basket for the nurses and staff here in Select. Which I brought one of in today (I got enough to do two baskets). Now. Uhm. So. I brought in the gift basket, and… I’m trying to figure out the response I got, which was basically…. staring, and a mumbled “uh, thanks?”. Did they …. not like my offerings? Tea, chewy granola bars, and hand lotion. Was it … not good enough? Not enough? The wrong kind? Or… do they just never get given thank-you gifts, and they didn’t know what to do? Surely I can’t be the first person who brought something in here for the staff? I mean, granted, unlike my previous gift baskets to the nurses on 4 and 7, this basket was actually less of a “thank you for everything you’ve done so far” and more like bribery so that we stand out as being grateful if they do actually ever do anything worth thanking them for. But .. did that bad energy come through in the gift? Is that why nobody was enthused? Meh. Ugh.

And why didn’t I ask for help with this round of gift baskets, you ask? Because the last time I aske for help, with getting Tim some new Rubik’s Cubes, he then tanked right after and hasn’t been able to do more than even just look at the first two I brought in, and I don’t want to keep bringing in new ones if he’s not playing with them, and I feel bad that y’all bought all the ones I wanted for him so quickly, and not he’s not even able to play with them. So I didn’t ask for help with these gift baskets because I felt bad about that.

I wonder now – another “what if” – if I had been able to let people around more, if Covid wasn’t a thing? It would all have been different, right? Maybe. Maybe not. “What if” is a spiral I don’t need to go off on. And yet I do.

When the troubles of this life are over
I’ll fly away (fly away, fly away)
To that land on God’s celestial shore
I’ll fly away (fly away, fly away)

Which reminds me; talk about what people can do to help! People ask me a lot, “what can I do” or “let me know what I can do to help” and … y’all, I don’t know how to answer that, I have to be honest. What I hear when someone says that, is that they want me to give them a task or a job. But what if the task or job I need done isn’t in their wheelhouse? Can you put together a Catio? Can you screen a window? Can you chop down some trees? I don’t know how to think of something that needs doing, if I don’t know what you can do.

I mean, I’m never going to turn down someone cleaning out my cat boxes (or now, the floor of the Catio, haha), or watering all of my houseplants, or cleaning poop out of the tortoise habitats… but all of those things are at my house, and my house is half an hour outside of Gainesville, and to arrange getting a key made for someone and getting the key to them and explaining where I live, and where all of the cat/tortoise/plant supplies are… after the time spent doing that, I might as well just do the thing myself. Does that make sense?

Do I need things picked up for me? Not really. I don’t have money to just randomly buy things, and after two years of the pandemic, if it’s something I need on a regular basis I most likely get it shipped to my house on a schedule (again, living in the middle of nowhere, not even close to a HellMart). The few things I “need” from in town, I can now get because I’m in town every day — and most places have online ordering with curbside pickup. I can throw an order together for bird seed and houseplant soil and cat litter and swing by WalMart and pick it up curbside on my way home. Same thing with CVS, or groceries. The one thing I really needed someone to do for me, take my car to Jiffy Lube for an oil change because of all the miles that I’m putting on it (Google Maps tells me I drove 1402 miles in February), Sharon took care of that while she was down. I’m good on that for another … six weeks, or so. And when Sharon was here and took care of that for me, I was still spending most daylight hours in the hospital. Now I’m trying to leave between 1 and 3 every day, so if that’s still the same when I need my next oil change, I can just go by Jiffy Lube on my way home.

I’ll fly away, o glory
I’ll fly away in the morning
When I die, Hallelujah, bye and bye
I’ll fly away (fly away, fly away)

Many people have offered to come by and sit with me, and that’s the thing that makes me the saddest that I have to say “no” to. Covid makes things so much more difficult.

If someone wants to come by to sit with me, and they’re not on the very small list of people who are approved to come into his room (basically, me and Jenn, because I’m holding spots 3 and 4 for his family members, if any come back down while he’s still in here), then I would have to come out of Tim’s room and sit in the waiting room with you. Which, I have to be baldly honest here, my anxiety will NOT let me do. I can’t be here and not be HERE. One of the reasons I come here is so that I can be here to witness things that are happening, so that I can talk to nurses and doctors to see how his time after I left the day before and got here this morning was, so that I can talk to them about any procedures he needs done that day, any plans they have for PT/OT/Speech. I can’t do that from the waiting room, or from any of the lovely little garden seating areas outside.

And again, Covid. Yes, I am masked, vaxxed, and boosted, but I’m in a hospital for hours a day. Yes, I wash my hands all the time, and sanitize after I touch Tim or help the nursing staff and on my way into and out of the building. But that doesn’t mean I absolutely can’t carry anything around with me. The last thing I need is to be responsible for getting a loved one sick. So I’m trying not to spend a lot of concentrated one-on-one time with a lot of people, I’m trying not to expose my loved ones to anything I might pick up here in Shands, and I’m trying not to get exposed to anything outside of the hospital that I then wind up bringing in with me and giving to someone here who’s already more than ill. I know the CDC is saying we can relax our mask standards, but… the nurses and doctors on this floor are double-masked and have face shields on when they come into the room. How can I ask them to take those precautions and then not be careful about where I go and what I do?

Like a bird from prison bars flown
I’ll fly away (fly away, fly away)
To a land where no sorrows are known
I’ll fly away (fly away, fly away)

Which is my long-winded way of saying that I don’t know how you can help me. That I very much appreciate and hold close that there are so many people who love us who want to do things for us, but that I don’t know what to tell you to do. I don’t know how to tell you how to help. I don’t have children I need help caring for. I don’t have dogs any more (but I did tell Tim that I get a puppy for every thirty days he’s in the hospital… shit, next week I can get three of them!). I don’t live close enough to anyone but Denise and Tarrant for running over to my house and taking care of … I don’t know, garbage pickup, or recycling, or whatever.

I think I got this letter four or five times when he was in the hospital. What a bunch of bullshit. Does anyone human actually work for health insurance companies? How do they sleep at night?

Anyone need any ceramics? Or soap? Yarn? HaldeCraft is still open, although there might be a 24-48 hour delay in shipping, and I’m not open for custom orders at the moment. I have a Patreon account where I write blog posts, Meme Church on Sundays, and am allegedly writing a book although I’m behind in my chapters (and I can just feel Burgess shaking his one good fist at me, wanting me to fucking get on with it, already, could I have dropped the ball on more of a cliffhanger?!). I kind of need to get back to both those things soon (regular chapters, regular HaldeCraft restocks) because it’s either get back to that and make some monies …. or go out and find a “real job” soon.

OK, I think I’ve rambled on enough for today. Have some photos. And tell someone you love, today, how much they mean to you.

xoxo y’all

Tomorrow, everything changed. Again. For the worse. Again.

What I’m a little surprised I didn’t mention on this day, is that he was filling up with air again. Remember that pneumothorax I mentioned the other day? And the chest tube? I noticed that he looked puffy. I asked the respiratory guy when he came in, could this be another pneumothorax or something, and he said that sometimes air does escape but it should be fine. We asked Tim if he was in any pain, and he shook his head and looked bemused. Confused? I wonder now if I had pressed the issue, what would have happened. Another “what if”. Another event that I feel like, well, I brought it to the attention of a professional and they didn’t see an issue, so I feel like I did what I could, but what if I had brought it up with someone else? What if I had asked for a second opinion? Would that have changed anything? Would I have been able to change things? Would I have been able to save him? Or was everything else going on with his body, just too much? Would it had made a difference?

I’ll fly away, o glory
I’ll fly away (In the morning)
When I die, Hallelujah, bye and bye
I’ll (fly away) fly away

Lyrics by Albert Brumley
I’ll Fly Away