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.

This is so damn confusing

And I feel bad for webmuskie. Like I know I’m not the cause of this but this whole thing has raised her blood pressure and made her puke and I can’t help feelings partially responsible even though I didn’t cause any of this.

What’s really confusing is the way they talk to me. They say things and I never know how to take them. Is what they say a change in the plan, or a difference in wording? And when I’m this sick and tired and everything it all becomes a jumble of words and I can’t adequately report things to webmuskie and then things get weird.

She’s talked to patient relations and they’re apparently going to try to teach the doctors how to communicate clearly, or something. I hope they actually mean to communicate clearly. It’s all really … Oh no I know what’s happening. Part of this is the cognitive dysfunction I always get in hospitals. I just realized because everything was starting to go all white in my head. That’s really bad. I need to find ways to keep my brain active other than trying to pick apart the words of doctors to determine what the fuck is actually happening.

The weirdness of being told that the death alternative is the one I should consider.

So here’s some of what’s been going on.

As my gastroparesis has gotten worse, I’ve been aspirating more food from my stomach because of the gas bubbles caused by the gastroparesis. I also haven’t been able to maintain even the minimal Iiquid diet I need to get enough nutrition in a day. When I aspirate the stomach contents, they cause lung infections every time, which aggravates my bronchiectasis and often turns into pneumonia. I’ve had five lung infections or so in the past three months and even more aspirations.

The main solution to this is to get a feeding tube called a g-j tube. The g tube would be used to vent gas from my stomach and the j tube would allow me to feed food directly into my intestines, bypassing the stomach. There’s not a lot of other options for me right at the moment when I’m hospitalized for pneumonia and I’m in danger of aspirating again at any time, it happens several times a month. We have to get the problem under control before we can do anything else because you can’t just keep on getting pneumonia without running a high risk of dying.

Every doctor since I got here has been talking about feeding tubes. I discussed it with them and chose the g-j tube. In reality I chose it months ago. There’s been talk about feeding tubes since I was diagnosed with gastroparesis last fall and again when the diagnosis was confirmed this winter. This talk isn’t new or scary. I’m more comfortable with the prospect of a feeding tube than anyone else in the room, aside from being a little afraid of the pain early on after the operation.

I was told that I would need a consult with a gastroenterologist in order to be sure what kind of feeding tube to get. I had a consult with a gastroenterologist with other people including my case manager and durable power of attorney for healthcare present either in the room or by phone. The gastroenterologist was not an expert on gastroparesis.

What became really disturbing was the gastroenterologist’s attitude towards my treatment. He kept trying to find ways to persuade me that I didn’t want a feeding tube. He said I had to consider alternative options. My DPA pointed out that the current alternative option was death from pneumonia. The gastroenterologist confirmed that he knew that was the only current alternative. Then he went back to what a big scary decision a feeding tube was, and other things intended to dissuade me from what’s known both with gastroparesis and other neurological problems causing these problems, to be commonly the next course of action.I simply can’t continue aspirating like this, getting pneumonia this often is a very bad thing. I’ve had a number of close enough calls I’m not interested in getting any closer.

But apparently this guy, even after “the alternative is death” was spelled out, not only agreed to this, but still kept pushing “the alternative”. And he was not the only person who appeared to know my life was in danger yet kept asking me to reconsider getting the tube, they’ve tried all kinds of ways.

I wanted to make especial note of this because its not a case of someone making a mistake. The alternative was spelled out, he knew what it was, yet he continued to push it and try to keep me from deciding on a feeding tube. He only gave in when it was clear I had decided I wanted to live awhile longer. There’s been a lot of grudgingness.

Not everyone here has been that awful. Some of them don’t seem to see their biases. Some of them seem to be really flagrant. Some of them tell me it’s good I stick up for myself every step of the way because only I know my own body. But there’s been a disturbing parade of people trying to convince me not to do this.

They tell me it’s hard to live on a feeding tube. It’s hard to live with eating so bad you feel like throwing up when you drink three Ensures a day, too, and it’s impossible to live indefinitely with getting pneumonia over and over.

They give me crap about what’s required for the procedure and whether I’ll be able to take it.

They try to tell me that it may not work. Every procedure may not work. This is the least invasive option in this situation. Cutting my stomach out could be done too but that’s far more invasive. Getting a G-J tube is totally reversible if it doesn’t work and it doesn’t prevent me from eating food if I want.

They play up the risks. There are risks. I’ve considered them. I’ve decided they’re less risky than aspirating every week or two. But overall in this day and age the risks are minimal compared to the potential benefits.

Luckily I have a DPA who is well versed in all of the medical terminology and can argue for me when I’m lost, or for that matter just too weak and confused and vulnerable to handle these conversations. Where every single time I have to push forward against this invisible force that seems to want me killed, and say “Yes I want to live, give me the feeding tube” no matter what I’ve been told just beforehand.

And luckily some doctors have been on the side of the feeding tube since the day I walked into the ER with pneumonia and a really ugly CT scan of my lungs from a few days prior.

But there are those who aren’t. And there are those who actually seem to, given explicitly the option of me dying, want me to choose that option. And that is scary. And I think how many other people in the hospital are getting treated like this.

Other evidence of disability discrimination is simply what happened when I was admitted. They at first refused to admit me without a 24/7 escort from the local developmental disability services agency. That basically meant they were willing to admit on the basis of disability rather than on the basis of who is sick and needs treatment. There are very strange things going on here.

They must be getting calls though because they’ve become a lot more conciliatory in the past few hours. They’ve said I’m definitely getting the tube now, the same guy who tried to talk me out of it before. I don’t understand this but I think they may understand people are watching their every move. What I worry about are the ppl here without those connections to call on.

I swear it seems like they want to add every possible obstacle to me actually, you know, living.

Of course I plan to stay living. And that in itself pisses some of them off. But WTF is so Fing hard about placing a feeding tube that they have to do it in the hardest possible way for someone with autism and gastroparesis!?? (Involving swallowing and keeping down contrast liquid, and a nasogastric tube just for more fun at trying not to rip my own face off trying to get it out.) Meanwhile pushing the day of the procedure forward a little every day and just looking faintly fidgety when I say “Every extra day is a day I could aspirate.” I don’t always know whether to scream at them or cry. Probably neither but they’re maddening beyond belief and I’d say at least half of them don’t care if I’m alive. If not all.

My Skype description of my liquid antibiotics that are supposedly cherry flavored

Ok so.
In order to find the cherry.
You have to be looking for the single little cherry under the mound of rotten cabbage.
That’s fucking just vile disgusting WTF why do they do this to sick people?