Endless Circles of Dysfunction

 One of my favorite specialists is leaving. The really smart specialist in a specialty that generally has a lot of dumbasses. Leaving. Sigh.

I'm sure it won't be the last. I know one of my other favorite specialists is hanging on by a thread. They've been in the thick of it with Covid and are beyond over it. 

I'm still spinning in circles with genetics. The level of administrative incompetence in the world is...a lot to deal with. Systems and processes don't work anymore. People don't do what they're supposed to. Just basic stuff isn't happening. It takes even more phone calls to get nowhere these days.

I spent weeks chasing the genetics appointment I was supposed to make next. The one the genetics department themselves told me to make. Ha. I couldn't get past the receptionist. I wasn't allowed to make the appointment. 

The other weird thing, when I told them the name of the Doctor I was supposed to see, they said crap like 'you must be special' and 'you must be a hard case.' On what planet does anyone in my shoes want to hear that? 

You know what I want to be? Free. Healthy. Done. I do actually have better things to do with my life. It'd be great if I could do them.

But instead I make phone calls and can't get any appointments.

So much for being 'special.' 

My hepatologist ordered a liver ultrasound and it looks like I have a new tumor somehow. Hep says don't worry about it. The MRI is more accurate and I just had on in Sept 2020, so we default to that, not the ultrasound. 

Hep is right. I know they are. BUT...there was something about the way the report was written that concerns me. The attention to detail was above and beyond. Whoever looked at the u/s really looked and they were very careful. I don't like that they saw anything. It makes me nervous when someone being so diligent sees something. 

But Hep is waiting for genetics now. So I'm in a holding pattern when it comes to discussing whether we should do another MRI or not. Hopefully I'm just insane. I'd love to be insane. It would be easier.

Meanwhile the kiddo's fever is back. I'm not sure what to do for her. We've been managing this as Lyme (again classic presentation--we had a picture of the bullseye, diagnosis made at a major medical center) but it's not acting like Lyme. 

Lately, I take her to as many doctor's appointments as I go to. 

It's heart breaking. 

It wouldn't be so bad if at least we were making some inroads, but that's not happening. At this point we have no diagnosis, no treatment, and a lot of difficulty making appointments. In the one hospital system, there are no specialists at all. We have referrals from the ped, but the hospital doesn't have the specialists on staff...something weird is going on with their staffing. 

So she's getting screwed now too. 

She fell down the stairs again this past weekend. She couldn't tell us how or why, but she's been asking for a cane so it's easier to catch herself.

I guess I'm ordering my kid a cane. 

Jesus.