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8:36pm April 3, 2013

So today was interesting

By which I mean I still can’t get out of bed. Meaning I need a bedpan. In order to get on a bedpan I need to be rolled by other people while I hug a pillow to my abdomen to keep it from horrible pain. Like even at my best pain control, if I actually move the pain jumps up to a nine.

So at some point today the nurses and LNAs decided I was much more healed than I actually am. And began to demand that I turn myself in bed. Due to a combination of hypermobility and the fact that all my muscles in my abdomen seem attached to the painful hole through those muscles, this means that I ended up:

1. Injuring my shoulders
2. Clinging to the side of the bed in agony while uncontrollably crying

While the nurses and stuff exclaimed how well I was doing and to keep it up. I said I couldn’t brace my abdomen properly without two hands on my pillow, and they said that it was really really important for me to become super independent as fast as possible so they wouldn’t roll me.

This was actually completely inefficient too. We all had a harder time with the entire process and the bedpan spilled a bunch of times. And other various problems. Besides the excruciating pain. It takes a lot of pain to make me cry.

Mind you this was after I talked them into letting me use the bedpan at all. I had, injuring myself along the way several times, once made it to the commode alone. And another time done it with help. With help, I basically screamed bloody murder in the middle of the night and woke up other patients I’m sure. But they decided I’d done it twice so I ought to be able to do it over and over and over again whenever I wanted and damn the consequences. One nurse even told me that I was obviously able to do it BECAUSE SHE HAD SEEN ME DO IT BEFORE THE SURGERY EVEN HAPPENED.

So they seemed to be wanting me to do all these things that both impede healing and ratchet my pain up to extreme levels. Uncontrolled pain by the way, makes surgical healing much worse. So both all the twisting and turning and the pain are probably making it take longer to heal. But they seem to think if I’m off my feet for a few days then I’ll never be able to get out of bed again for life. Which has not been my experience ever.

So we talked to the head of nursing and she saw the problem right away and talked to people. Now they roll me and the entire process is fast and almost painless very efficient and easier for both me and the nurses involved. The lack of arguing when I have to pee is a plus too.

They seem to think that if they don’t push me then I will always want a bedpan. Who the hell wants a bedpan? When I pee it makes my entire butt wet,and them someone else has to wipe the whole thing down. It’s really unpleasant and I would never use it if I didn’t have to.

This wasn’t the only or biggest issue today but its turned into a huge problem. This morning my pain was almost controlled. Now it’s very uncontrolled. I spent a couple hours delirious. Even the heavy duty pain meds aren’t knocking it back far enough to be anything but incredibly uncomfortable the vast majority of the time. This is a problem not just for surgical healing, but for delirium prevention and for my sanity as well. It’s never below seven. Never. Not anymore. Not since many agonizing attempts at bed mobility that ended up in screaming or crying uncontrollably.

Oh and the other ridiculous thing about discharging me tomorrow? Besides the fact that pain this bad requires IV pain meds mixed carefully with lots of nausea meds in a way only a doctor can prescribe?

We are still working out what rate to tube feed me at. This takes a really long time to get right. As in, they start really slow, then go faster and faster at tiny, cautious increments of hours at a time. They would not have time to reach the optimum speed before discharging me if they discharged me tomorrow.

Plus the people who provide my services, even without all this other stuff, need to be trained by doctors and nurses how to use the feeding tube before I can go home. And that includes weekend people and anyone else coming into contact with me through services.

Current word is that they’re not throwing me out. But I don’t trust it. I don’t trust a word they say. Just this morning a doctor told me that I would lead the way to saying when I needed to be discharged based on what I said my body was ready for. Next thing I knew my case manager at the hospital told me I was going home tomorrow afternoon and the team who meet without consulting me had decided without me. Now they’ve backtracked again. And I don’t know what is going to happen next. No idea. Because I have no control over anything and whenever they promise me something they break that promise with some lame excuse for why, if any.

Worse, with my pain going out of control, I can’t fight anymore. At least, not like I could before. I was delirious before and I may become delirious again. Delirium is terrifying. And it renders me completely useless at fignting. Webmuskie says she will do the fighting for me if if comes to that and that she’s shocked I held out this long. But I’m becoming increasingly incapacitated by pain.

How hard is it for a hospital to wait until I’ve healed before sending me home? I can’t even get out of bed. At all. And for that they talked about sending me to a rehab or a nursing home. Because after a surgery that will heal quickly (IF ALLOWED TO IN ITS OWN TIME), I can’t get out of bed. Nursing home. Makes no sense in this context. And I’d stand a good chance of dying, or of popping up back in the.emergency room with pain up to the level of ten. Because only a combination of pain meds and nausea meds and stuff will even allow me to stay below nine. (And it goes up to nine if I move.)

So I hope webmuskie can fight this for me because I’m so close to being all out of fight. She’s right that I’ve lasted a long time but I’m not superhuman. It’s not that I’m giving up, it’s that I’m becoming too incapacitated to do the stuff that needs to be done.

And they’re not discharging me for my own good as they claim so commonly. They’re trying to discharge me because they want to open up beds here so they do that by sending very sick people home with no support or sending people to nursing homes and other fun stuff like that. And that’s how easy it is to lose your freedom.

We will see what decisions tomorrow bring. I’m tired of a new fight every single day. I’ve never had a hospital stay so full of bitter pointless soul wrenching fighting.