Out of Order

 Ha. Some of my posts are posting out of sequence. I think.

I don't know.

I do try to have the posts be sequential even if they aren't tied to a finite timeline. I don't want to give you X before A, but I think I did?

I'm pretty drunk on lack of sleep and low oxygen from the asthma so who the hell knows which end is up anymore.

Not me. Well, if you see anything weird...I'm not 100% despite my best efforts.

Okay. Let me go check the last thing I wrote so I don't repeat myself or forget something or screw this up. One second...

All right. I'm back. Pulmo tweaked settings. We all hoped that would work.

And meh.

Not so much.

The asthma isn't as severe, but I'm not able to do much. I'm too short of breath for much activity. Even talking will get me. It's not really tenable.

But the fact it's not as severe maybe gives weight to my theory of a contaminated machine or maybe even off gassing of new plastic parts.

Pulmo says to give it a few more days and see. I'm probably going to take a night off here soon just to give my lungs a break.

And sadly, surgery sounds heavenly at this point. This is miserable. I'm absolutely exhausted. I've started losing weight again because I'm too tired to have much appetite. I also have no sense of time so I forget to eat on top of that. 

Just what I need. More illness associated weight loss. That's always healthy, right? Argh. (For those who don't remember, I mostly lose weight to illness and then regain it once I'm better and then struggle to lose it when I'm healthy. Maybe the Ozempic will trump that pattern, I don't know. But I really really really do not want to lose weight like this. It doesn't end well in my experience.)

Anyway, I'm in a holding pattern. We'll see what happens next.

I met with the dietician and we tabled the whole thing because everything else is too much chaos. I don't have the energy to cook or shop so it's kind of pointless until I regain some stability. They just urged me to eat so I don't tank my metabolism. I'm trying... I like food...I'm just in an appetite suppressed fog.

And the geneticist is calling asking follow up appointment. Not sure what's going on there. Probably nothing with the way it's been going so far lol. But I keep forgetting to call them back until after hours...see also, the aforementioned no sense of time right now.

The teen...PT is now matchmaking between patients. Which is nice but kind of odd. We've got numbers and names of other kids to meet up with. So that's cooking. We'll see where it goes. The school year's about to start and the teen is going to be busy so... 

The thing is, we're being lumped in with connective tissue disorder folks but we have no diagnosis. I don't know. Maybe they'll know a doctor who can diagnose whatever it is that's going on here. This is so frustrating.