Remembering my messed up school.
Full of messed up rich kids. Or upper middle class kids. Or whatever the hell they were. Small number of middle class or working class kids, but not many in comparison.
I was supposed to give a report on a state, and dress up as something from that state. And fishing was one of the state’s big industries. So I dressed up like a fisherman. Wearing what I thought were pretty normal clothes for being out on a boat. That I got from my own closet.
Kid in my class, who knows about the reports, sees me. Does a double take. Says “So, are you supposed to be a junkie, or are you a bum?”
I’m guessing he’d never seen normal working clothes in his life?? Idk. Everyone there seemed to have parents who were CEOs, executives, doctors, lawyers, etc. Not technicians and respiratory therapists. Certainly not fishermen.
Feeding tubes aren’t pitiful or scary. Stop it.
Every time an LNA comes in for the first time since seeing me before I went to the hospital, she always says “You have a feeding tube?!” Without bothering to disguise the horror or pity in her voice. I always get so pissed off it’s hard to even say yes. This feeding tube is extending my life — I could easily have been dead by now without it, the way things were going, it would only have taken another couple bad infections. And you expect me to feel bad about having it???
Of course they never felt bad for me when I had to choke down the same exact kind of Ensure and meds every day while fighting pain and nausea to keep it all down, and still was losing weight really fast.
Not that pity would have felt good to me then either. But at least they would have been expressing bad emotions about something that actually felt bad to me. The feeding tube doesn’t feel bad. It feels like freedom from all those bad things that happened before. Not that they entirely go away — I can still aspirate, I still have nausea and stomach pain, I still have gastroparesis and reflux after all and still have to work hard managing it — but they’re much improved.
I am sick to death of people telling me what to do.
So now the visiting nurse says some doctor I’ve never met in my life says I’m not allowed to have ginger ale. And the same doctor wants my feeding speed to go from 24 hours a day up to 12 hours.
I point out that she has messed up priorities given that the ginger ale and slowing the feeding speed down probably saved my life or at least kept me out of the hospital.
She says its her job to educate me. Like I need any further educating. But apparently according to her every single thing my body screamed at me to do on Saturday was bad bad bad and I need to stop and obey people who don’t even know me, never even met me.
I tried to educate her about how with gastroparesis, you do orally as much as you seem to be able to tolerate.
But no, apparently if I do anything by mouth I could aspirate it.
Except I don’t seem to be aspirating. At all. And by now I would have noticed. Given that I was aspirating up to several times of week before the tube was placed. And now I’m not aspirating at all. Not even once.
What I was told to do in the hospital was do the feeding speed as fast as I would tolerate. If I experienced any of several disturbing symptoms I was supposed to turn down the speed.
Which is exactly what I did.
But now some nurse who thinks I’m stupid or something, thinks I’m doing it all wrong, because some doctor I’ve never met who thinks I’m stupid or something, says so.
Somehow I feel like this is more about covering their asses should I keel over dead one day, than anything about helping me.
These are of course doctors from the same system that tried to convince me not to get the feeding tube at all, because “the alternative” (dying) was better. And now they are acting all concerned about my health.
I don’t get it.
The nurse is terrified of twenty four hour a day feedings. Even though my body seems suited to them. Even though I was told its totally acceptable.
She seems to think I am going to lose weight and lose muscle and WTF why weren’t they worried about this back when I really was losing weight and losing muscle.
I’m getting more than enough calories in twenty four hours. I don’t get it.
I was told the twelve hour feedings are a matter of convenience. It’s a luxury thing. The ability to stop for twelve hours and do whatever you want, not tied to the IV pole. It’s not a necessary thing.
She believes the twelve hour feedings are a matter of necessity, that anything less will cause me to drop tons of weight and maybe die.
I don’t even know how to communicate with this person. She is so strange. She doesn’t trust anything I say.
And I don’t trust her. Her priorities are all wrong. She’s all about making sure I don’t get a bedsore sometime in the future from twenty four hour feedings (never mind that they don’t change my positioning in bed at all from what it is on twelve hour feedings), but doesn’t seem to care if I dehydrate in the present.
Oh and apparently. See. I took all these steps to stop the horrible dehydration I was experiencing last week. And it was horrible. And it was dehydration.
But I was measured. After taking those steps. And now I’m not dehydrated. So apparently this means I was never dehydrated. So apparently that means I don’t really need to do all the things I did to stop the dehydration and prevent more of it.
It’s so damn circular I don’t know where to begin.
And she thinks I’m the one who doesn’t know what I’m doing.
Okay that really didn’t work.
I was going to tell a story about a conversation between me and a friend about my new assistive tech, but I literally just started typing nonsense. Like the sentence structure made sense but the words were just random. Seems my brain has decided it is going to make it really hard to use the right words. So I’ll save that post for another time. Grrrrrrrr.
As an illustration to my last post. This is a fairly typical facial expression for a high 7 on the 1-10 pain scale. My friends can all see it instantly and even guess the number with decent accuracy. For some reason it’s invisible to lots of nonautistic people. It’s pretty clear even to me if I look on my face picture here. But somehow lots of people can’t see it. I don’t get how something so obvious is invisible to them to the point they’ll swear up and down its not there as if they can read my mind.
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
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?