Ripping

This week was supposed to be quiet. No one has any doctor's appointments! Because I don't just manage medical stuff for myself, but for the whole family. The kiddo continues to have a daily fever but we don't have any appointments to address it for a while. My usually healthy hubby managed to have an urgent medical thing that's going to take several months to work through. So I've been to the doctor even more than usual because now there's three of us orbiting the medical industrial complex looking for a place to land. 

I'm everyone's medical coordinator.

Momming and marriage are a whole other level when there's medical fuckery.

So I was excited to see I finally didn't need to go within six feet of a stethoscope this week. 

And then...

And then something in my liver started ripping. A ripping sensation generally means it's ER time because a tumor's gone off the rails. I was on pins and needles, texting my husband to be on the alert, dreading the idea of throwing myself into the ER grinder again. I stopped eating completely and was so very very careful about how I moved and what positions I was in. Thankfully, after twelve-ish hours, it seemed to resolve instead of escalate. It went to the line, but didn't cross it.

Unfortunately, I'm still skittish and spooked and more symptomatic than usual. My liver has been irritated since my ultrasound a few months ago. Up to that point, I'd improved a lot. I could pretty much eat consistently. My energy is/was better. My liver didn't constantly feel like it was rotting inside me (a terrible feeling). Car rides stopped causing the bile ducts to painfully spasm (I assume that's what it is that's boinging like it's been zapped with a cattle prod).

Except the ultrasound brought some of that back. I don't know why the hepatologist ordered it. I really can't handle pressure on my liver like that. The tumors have a hair trigger and freak out. We're going to have to discuss it when I see them next. 

I need medicine to not be making things worse. 

And speaking of not making things worse, I'm watching the news on Roe v. Wade and wondering if I should get my tubes tied. I shouldn't be able to get pregnant and we are careful, but never say never. I'm not looking to compound things and risk jail if somehow my bizarre body manages to pull off a pregnancy that, at this juncture, wouldn't end well for anyone involved. And maybe I should do it before even that becomes illegal.

We seem to be determined to live in a dystopian hellscape anymore, don't we?

With regards to the genetics testing, I'm finding people assume there's something dire going on and I can't talk about it without causing some alarm. I know enough now to assume nothing dire until the test results come in. 

There IS actually a point at which you stop worrying about test results. You can only be scared for so long, and in reality, medicine moves so slow, you run out of scared long before they get back to you. (I've also lost all anxiety about anesthesia, but am still terrified of most surgeons...they have a particularly toxic subculture in my experience). 

The most likely culprits will generally just mean more testing and imaging anyway. 

It's not going to be that exciting, as I understand things now. There's no imminent death sentence. At least not from the genetic testing. Even with some of the more serious possibilities, it would appear, from what I've read and the patients I've talked to, that I'm on the mild to moderate end of the spectrum of things. Just my swamp hag age means it's probably not something that's super deadly. Deadly stuff gets you long before the swamp hag stage.

If whatever it is was going to be dangerous, I'd be much worse off than I've been.

This is more about finally having an answer for myself and my family. Finally being able to make sense of my body. Finally having magic words that will hopefully cut through bias and obstructions in the medical system so I can waste less time on this shit. And actively giving my kid a chance for a better outcome.