Are You There Science?

Spent some time with the sane side of my family for the last Christmas event. Yep. It is kind of late. Listen, between divorce and X number of siblings with spouses who have parents who are also divorced there's something like 15 Christmas get togethers and it's hard to coordinate. Oh, and there are holiday adjacent birthdays a few times over. So it's up to like almost 20 different family events between everyone. 

So. I try to just roll with it and find an opening that works for folks.

It was lovely. The teen got some 1:1 time with cousins. She's lucky enough to have a good crowd of cousins who all mesh well.

Unfortunately, she's not feeling well. Still. She's just having a lot of issues. She's on the 11th med now and has taken every possible chemical available now. Another one is out of stock so she's getting the full brunt of those symptoms on top of everything else.

 No one has any answers. Not even Dr. Google...she's either got some bizarre beyond extreme form of normal body whackiness or has something really weird going on. We can't tell which. And neither can the doctors. And some of this has major quality of life implications. It has to get fixed. Has to. Any kind of a normal life won't be possible otherwise. 

We're doing what we can. We were offered Chinese herbs and we're desperate enough to take them now. We've triggered some second opinions and we've got some follow up appointments coming as well, that hopefully (please please please) will stabilize other things that decided to yeet themselves off the rails.

And we're having conversations about how we get off this hamster wheel. She hates this. I hate it for her. Can we optimize? What do we have to do vs what we like to do? What's working vs. what's not?

 I've suggested we take PT down to once a month. She's doing her exercises largely on her own steam now and probably doesn't need weekly appointments. And the thing is, PT is useful but it's not really changing anything. It's not increasing her functionality. So if the impact isn't there, why are we going every week? 

And we're hoping to replace the infusions with medication. Infusions are nice. The extra fluids are helpful, but it doesn't sustain and it's a lot of driving and a lot of time to go every week. Is the value there? Could something else work better? We're going to find out.

This schedule of constant appointments is unsustainable. Half the time we are at the doctor or at pt or at an infusion anymore. Half. The. Time. The specialists all want to follow her closely, but then don't have any good solutions. I'm ready for hubby to pull FMLA and start handling some of this. I don't have time for my appointments that need to be done and my post covid/living with tumors/spine not letting me sleep energy is struggling to keep up. Oh, and I'm supposed to be working too. And cook dinner. And clean. And organize the household and, and, fucking and. I'm drowning. 

I can't believe that I have a kid with objective abnormal stuff and no one can figure any of it out. That it's so damn hard to stabilize. Like, they can see there are problems. We aren't running into issues on that side. They see it. It's tangible for the most part so we don't get blown off, we're all on the same page. It's the complete lack of effective treatment that's the pisser. 

Come on, Science. Where are you? My kid needs you.