Sidequesting for Treatment

I'm trying not to get ahead of myself because nothing's final until I have the foot MRI, but I'm guessing I have another growth that needs to be removed.

And in my quest to feel better or find anything at all I can do that will help, I've gotten into the patient groups.

I hate it. 

Because I have to sift through so much information. 

Because I'm looking at all the information on surgeries.

And I'm reading it all because I'm probably going to need to know it.

It's the same bullshit, different diagnosis.

There's often a discrepancy between what's considered the gold standard by patients vs. what doctors say is the gold standard of care. So you have to read about a bunch of shit you never wanted to learn about in the first place in order to advocate for yourself and to make sure your doctor does a good job (if you've got the kind of brain I do or even care...I envy people who don't care). And you have angst about the care plan when it doesn't fit the patient gold standard.

Do patients even know best? Often they actually do. Especially on serious stuff. On surgeries...they're pretty good overall. They know the pitfalls and the traps and how to optimize outcome. They tend to be up-to-date faster than doctors on the latest treatments and care options. They're motivated by acute suffering, something their doctors (with some exceptions obv) don't have to personally do battle with. 

Patients will move mountains with wet noodles to escape the misery their bodies are churning out. 

So ignore patients at your own peril. But it's a lot of hustling to navigate and match up the patient expertise with the doctor expertise to where you feel you've got a good plan of care. It's hard to be confident in your care sometimes because the doctor's training and limitations and even experience doesn't always mesh. Or they want to be more conservative. Or they're better than the patients but aren't good at showing it.

On my liver surgery, there were less invasive options with easier recoveries, but my surgeon didn't even mention them because they weren't trained in the techniques. I had a butchery of an operation because that's all they knew how to do. The patients knew better, but the skills weren't there and supposedly I didn't have time to travel. Moot.

You can start to feel like there's no way to know what the best decision is. Everything seems tenuous and untrustworthy with arbitrary hard limits. It all sucks. It's all dangerous. It's all too risky. And you can't dictate any of it. You have little to no control.

Yeah, yeah...trust the doctor. But can you really? Not if you've been burned a lot. I've seen too many surgeons ghost and flake to be chill. Sorry. The good doesn't cancel out the bad.

The things is...you have no idea if your surgeon is going to be good until it's too late. You go in blind. They love bomb you to get you into the operating room, a song and dance that has no correlation to how they behave when the healing gets hard. 

You don't really know how good or bad your surgeon is until after they cut you.

On my spine surgery, they gave me meds that were fatal if combined, that even the pharmacist couldn't figure out how to tell me to take safely and they ghosted on post surgical pain. And they should've done a fusion. I'm probably going to need a fusion at some point to avoid full disability anyway. I'm not escaping it. My spine is crumbling and I've got extra spine in there that doesn't help. But the surgeon didn't wanna. They got scared off by the asthma. Then insurance jerked me around on the surgeon who did want to do a fusion.

So I didn't get a fusion. Which would've been better to do before getting covid than after. Now my lungs are even worse snowflakes than what scared the surgeon. I don't know if I'll be a good surgical candidate for anything major going forward.

It sucks. Here I am again. Figuring out the ins and outs so I have a shot at being mobile again. I like the podiatrist a lot. But that doesn't mean anything either in my experience. I've liked a lot of doctors who ultimately did me dirty. There are never any guarantees when it comes to surgery. It's all a crapshoot.

And I hate it. 

Lungs are edgy but better. Oxygen has improved finally but not back to normal yet. Maybe I'm past the hump. We'll see. Off the prednisone, but still sucking on every inhaler I own.

As for my stupid fucking foot...planning on a wheelchair for the traveling we're doing. Or just staying at the hotel. I can only handle about a half hour on my feet right now.