Holding On

 Holding on. Hanging in. Still tired af. Still lots of nerve and joint pain. Still pt-ing and stretching my ass off. Still getting some oxygen drops, although they aren't too severe...around 95. Trying, trying, trying.

And looking for a cut off point for medical appointments this year. I am hoping by September we can be done for a while. I would like a break. I'm ready to be done. A lot of it is basic stuff, nothing special. Maintaining relationships with different specialists. Setting up care to replace those I've lost. A little bit of extra cancer screening because of CHEK2. Nothing exciting but oh so very time consuming.

Things that are going well...

I am easing back into regular activities. I just tire out quickly. I had an interesting resurgence of the inappropriate fight or flight response during a really stressful doctor's appointment. It was way too hot, the office had moved and not told me leaving me scrambling to navigate a massive medical campus in order to arrive on time. Suddenly I was jumping and flinching at every little noise and my heart turned into a jackhammer. I haven't had that since the 2nd week of covid. Interesting to see it flare back to life to kick my ass due to stress. I was useless the rest of the day after that--to be fair the stupid appointment took five hours from start to finish, there wasn't much day left anyway. (Also this can just go away already. K? Thx. Byeeee.)

But I am overall more active. So that's moving in the right direction.

My mental capacity is good though. Wrote ~1/2 a book in two days. My hands are about to fall off, but the productivity is awesome. Sometimes stories show up and just need me to type. This was one of those times. I love it because the story is usually pretty clean when this happens. It's like it marinates in my subconscious and then surfaces all at once, almost fully formed.

I just don't know what goes on in the other half of the book yet lol. I have vague ideas though. It'll work out. Books that start like loose fire hoses, tend to keep spewing even if they sputter here and there.

Got the teen volunteering with the city so they've got something to do this summer. They're also going to help out an antique dealer with an eye to maybe doing a paid internship.

If you recall, they have their health stuff too. I am trying to keep them oriented with regards to illness only adds work, not removes it, you still have to build a life, do the work, move forward and also take extra special care of yourself. No one is coming to save you. Illness isn't a fairytale. It's a clusterfuck and you still have to pay taxes.

And then I attempt to balance that with whatever accommodations they need. The tricky part is teens are pretty emo (our exchange students were a master class in this and one will forever hate me because I wouldn't let them get into cars with kids I didn't know) and I've noticed this generation likes to wallow in dysfunction and hyperfocus on illness as a status symbol. It's a huge part of online culture for teens. We don't want to feed that, but we don't want to be giant dicks either.

So that's a fun new parenting game. Are they channeling the internets or do they actually need some help? If you get it wrong, your kid hates you forever. No pressure!

We had a good consult with Infectious Diseases and there's a treatment plan coming. I am not sure I agree with the diagnosis but it doesn't matter. The treatment is going to be pretty one size fits most things anyway. I think the kiddo is betwixt and between. Not sick enough to get a good diagnosis, not healthy enough to sail off into the sunset.

The fever has been going up, though. I am guessing it'll hit 101 soon. At that point I wonder what they will think. They've made a cognitive error imo in the decision tree. They forgot the fever has been going up. They've been telling us the set point changed. Except...it's not set. Not at all.

The kiddo was rather upset with the diagnosis, they also felt it missed the mark, and I told them 'Your doctor is really sincere and really trying so I don't know that we benefit from jumping to someone else right now. Your job now is to do everything they ask of you so that when you're back in their office and the fever is going up and nothing has improved, they know you did the work and they'll start thinking about what they might have missed. And we'll re-evaluate too and see if there's something else we need to do on our end.'

And there's something going on with their heart. I'm guessing it'll be benign? Maybe Covid enhanced dysautonomia...although the cardiologist says the data history predates our covid infections. So I'm not totally sure just yet. We have more testing to do. More serious stuff would have been serious by now, so I'm fairly optimistic about it. Or naive. Time will tell.