Trying to Wrap It Up

Saw the PCP  for the annual tap dance show and they felt we should do something with the kidneys given my history and the fact that I think I've been passing small stones here and there (or peeing out bits of razors somehow). Have an ultrasound coming up for that and then I'm done? I think?

Am I done? I think so?

Well, no. Not so fast.

Got boosted. It hit me like a semi on fire. My hips are all inflamed now. Sleep tanked because the hips hurt. Despite the pain, I crawled into bed and didn't move for a century. I completely stopped eating, which...

Someone mentioned, off hand, that ever since Covid, their appetite is all messed up--they're not eating. I'm pretty sure I have too many confounding factors (including medication) to tease out whether Covid is impacting my appetite or not, but after hearing that, I thought it was interesting that I lost all drive to eat after the booster.

And then I mentioned it to someone and they were like 'yeah, I've had people say they lost their appetite after covid.'  Huh. Weird.

The loss of appetite was then followed by an odd episode of pukey stomach flu-y something. Fun.

Anyway, I'd hoped the booster would boost me out of my post Covid funk. So far, no dice. In fact, I feel worse. Way worse. Bah.

I've lost pretty much all the progress I'd made to date. I'm good for about a half a day and maybe one big activity...going to an appointment or making dinner or working. I push the limits but one big thing is about all I can count on. By 3-4 pm I'm done. It's kind of like having mono again. It also reminds me of the pacing I had to do with adrenal insufficiency. Do one thing and rest and either recover enough to do another thing or be stuck resting.

Post booster life has been such a step backwards, I finally broke and called for an appointment at the long haul clinic. It's been over 9 months. I'm so depleted. I'm not recovering on my own. It's ridiculous. I'm so irritated that despite all the vaccines, and perhaps because of them, I still ended up in this hole.

Why is doing the right thing having such a negative ROI?

I mean, sure, I suppose this is better than ending up in the ICU, perhaps the vaccines spared me that, but I've been up to the line of needing to be intubated. I've been pretty damn sick with a lot of lung damage that took forever to heal. I have a frame of reference here. This recovery isn't any easier than that, based on my experience. It's different, but it's not less work or less disruption or less stressful.

I might be breathing better or have less lung damage than someone who ended up in the ICU, but you can't tell that based on how things are going. I'm still benched either way. I still pant like I had a severe asthma episode.

I'm not living a more functional life post covid just because I was vaccinated and stayed out of the ICU. 

Which goes to my big criticism of the vaccines. They aren't doing enough. I mean, I get we have no other option, but better than nothing isn't a level of efficacy that's going to get us anywhere. I know there's efforts to improve the vaccines, which is great, but it's going to come far too late for too many people.

I need a vaccine that prevents covid or at least prevents long haul and also doesn't destroy my baselines in the process. Where is it?

By the way, people get so mad when I criticize the vaccines. I'm fascinated by the fact that the narrative is required to be black or white. You must be either anti vax or pro vax and each extreme must be rabidly and rigidly defended. I had no idea how polarizing this was, that people had no ability to handle any level of gray when it comes to vaccines.

Well, listen, if there was a vaccine that was even just 70% effective at preventing Covid altogether, or hell just prevent long covid reliably on top of preventing hospitalization and death, we all know we'd abandon the current vaccines without a second thought and never look back.

It's not like what we have doesn't have A LOT of room for improvement.

Wanting something better or being unhappy with the vaccines' performance doesn't make me anti vax or not pro vax. I just want better. We all need better. What we have isn't going to get it done.

Meanwhile, ditch the masks and go lick the toilets at your nearest gas station, just lick all the public surfaces, French kiss everyone you meet, you're already inhaling their germs. The pandemic is over. Huzzah. Now everyone can have long Covid to go along with their three jobs that don't even cover rent!

Fucking hellfuck. This era is such an asshole.

Okay. Anyway. Can't do shit about it so let's circle back to weight for a moment. PCP weighed me and I was convinced the scale would show I'd gained a bunch of weight. The week before (pre booster) I'd had a really crazy appetite that only wanted sugar, sugar, sugar. No matter what I ate, I wanted more sugar. It was really atypical. I had a hard time controlling it...which is beyond abnormal.

 My control has been ironclad for years at this point because the tumors never allow any other option. (And yes, I eat all sorts of stuff but it's spaced out and the portions are small...I'm always tiptoeing around the liver. Yes, I've talked about having ice cream for dinner, but that's all I'll eat. I can't do a huge meal and ice cream frex. I could eat lunch and then do ice cream for dinner or skip food most of the day, eat very very lightly, so I can handle a small meal with ice cream after...that would work, but I can no longer eat like regular people. Haven't been able to for some time.)

(Things I don't mention much...the number of times I still hand half to all my food over to hubby. The meals I try to eat and suddenly find I can't. It's better than it was. I do eat, sometimes decent amounts even, for decent periods of time even, but it's not reliable. I have to be careful. And, as you've witnessed, if other health things go sideways, that just disrupts my intake even more. See also: Why I started Ozempic. Because I should've been losing weight and I wasn't.) 

This feral drive to eat eat eat was something I hadn't seen before. I actually struggled to stop eating. I just wanted to stuff stuff stuff myself with sugar sugar sugar no matter how liver felt about it. I was screwing myself.

Turns out my body wanted to attempt a period and it was all some kind of fucked up hormonal swing. Just what I needed. 

On the day of the appointment, I was super bloated and dreading the scale. I felt overstuffed, like bad taxidermy. My pants were tight. My liver was at a dull roar, irritated by the things I'd made it deal with.

Aaaaand I lost weight. Ha. WTF? I still haven't dropped a size though. I don't know. Maybe it's just muscle mass loss from not being as active since Covid. But I'm officially about 20ish pounds from--a no doubt very jiggly low muscle mass--goal weight now. 

It's just all weird. All weird all the time. I have no explanation. I am pretty certain that I really am violating the law of thermodynamics though. Like, it's not hyperbole.

Moving on...Teen has her knee braces. She seems happy, but I'm not sure how functional they are. I'm a little skeptical on how well it's all going to work. They look uncomfortable and difficult. If it was me...they'd be discarded in a dark corner somewhere. We'll see. If it helps her be more active, I'll be pleased. The jury is still out on whether that's the impact.

She says she's feeling better. Her joint pain is improving (although the hypermobility remains). The fever has gone down and stayed down. The medication seems to be working. Her heart is more stable. She's not back to normal yet, but at least she feels she can say things are improving.

However, we can't seem to escape the doctor appointments! We had another week with 5. I managed to cancel one and wrestle it down to 4. BUT NOW we're starting to put more pieces of the puzzle together and she needs to see another specialty. Oy. (And by the way, this was all the same week I was puking. OMG. It sucked!) Hopefully this next thing will just be a one and done spot check to rule stuff out.

The one really nutty prof now loves her and she magically has all As now and they want her to be in the Honors program. Which cool...but the teen's work quality didn't change, I just coached her through how to manage up. I'd rather there be more impartial grading going on, but I guess this is a good introduction to the real world. 

Sometimes it's not what you do, but how your boss feels about you. (I guess you could say the same about vaccines. Ha.)

Unfortunately, I didn't have anyone to explain this to me and I spent my early career focused on doing things well and being very confused as to why the boss was a huge dick lol. I eventually caught on, but I never liked it. See also why I'm self-employed. It's not just because of the health chaos. The difference is, if I wasn't interrupted by my health so much, I'd have taken everything way farther.

Co-op seems to be going better. She says they think she's funny (which she is, she has great comedic timing) and that the kids are "capable of doing group projects." They did a hacker competition thing and had a blast. 

The bigotry is in and out, but she's unflappable and has been learning to confront it head on. One of the kids came out as trans and her class group was ewww. She just looked at them and said 'how does what they do even affect you?' And they had no answer...

If we can get her health to stop yanking her around, this kid is going to absolutely slay.