Less Aggressive, Still Forward
Okay, okay. That last post was pretty angry, wasn’t it? I get really angry just thinking about the surgery a year ago. But I haven’t talked about what happened on this blog and I probably won’t ever. Definitely won’t ever. It was a nightmare. I still. My brain can’t wrap around how bad the treatment was. It was. It was awful. And that doesn’t even cover it.
I had to have a minor surgery this week, to have my displaced feeding tube fixed. Yeah.. Again. It keeps displacing because Ehlers-Danlos is stupid and that’s sucky. But it is what it is. I will say this: the hospital was a lot better this time. I still had to argue with them in order to have Master Pravus come into the back room with me, but once he came back and they asked the nurse there was a note in my file (heavy, heavy sigh) so they had to let him stay. I mean, I knew that. But the woman escorting me back didn’t believe me of course so. A struggle transpired. There wasn’t yelling or anything. I, of course, know better. But I had to be pretty blatant about “we spoke with the advocate. She SAID.” ::Heavy, heavy sigh:: Good goddamn. It’s. These are the things. And that was a day surgery. Gosh.
The anesthesia was actually good. I don’t remember anything (you shouldn’t)! They were on top of it. Thank goodness! He read my file! Spleesh. I. Good!
In the PACU I asked for my glasses about a hundred times but they wouldn’t give them to me. I guess that was my worst actual hospital complaint. (So overall, it could’ve been worse) And also that some numbnuts tightened my feeding tube bumper sooo much. It’s normally set to a “6” and they set it to a “4.” I haven’t lost any weight since my last surgery so there shouldn’t be any need to tighten it like that. But we didn’t realize it was tightened to a 4 until I got home. The thing is.. I woke up in so much pain it hurt to even just lay there, and I didn’t want to sit up either. And normally.. If they’re fixing a displaced tube.. I mean unless they cut a new hole I wake up in little to no pain. And it’s always tolerable. I couldn’t figure out why this was so terrible.
I even woke up that night in so much pain I couldn’t stand up straight. It was completely unbearable. We considered going to the hospital to figure it out. It felt like something was just wrong. Thankfully we were able to loosen the bumper ourselves. I know I go to a teaching hospital, but I wish someone would have checked the work of the person doing my tube. Because if I didn’t have a pair of forceps at home (yes, yes, my house is pretty much a hospital) that would have been an ER run for sure. It was awful. Bleh. But overall, since this was fixable on our own we didn’t have to escalate. I’m relieved. And I’m also grateful that the nurses were interested in helping my pain despite it being literally a minor day surgery. I think they could tell I couldn’t sit up etc.
So overall. I’m not feeling great about this next surgery. I know I need to do it. I want to do it, I think I’m just stressed because every time I start making any sort of physical progress some sort of major medical intervention overshadows that and sets me back. But I want to get better. And I need to get better. And this is a step I need to take to get better. And I haven’t stared at the wall at all in the last few weeks. I don’t like that I haven’t updated at all except for Day Zero Goals in the last month. So. Here’s a better update. A calmer less angry one. ::Tries to look less stressed:: I do feel less stressed. I might not the day before surgery. But right now, I feel a little better. The only way out in through.