6:17am June 1, 2013

Okay I’m home

But I feel like utter hell. It’s no thanks to the asshole doctors who basically pushed me out of the hospital without even transitioning me from IV meds to j tube meds. So I’ve had to do that on my own and it’s a rough transition.

I think some of these might be the doctors who fought so hard against me getting the feeding tube in the first place. Because they’re now trying to make a case that… Well to them, I’m a ree-tard, and yes I get to use that word, it’s a concept applied to me every single day. Nobody really fits that word, but it’s applied to a wide variety of DD people, including me. And that’s how the doctors think of me. It’s not a pretty word because their thoughts about me aren’t pretty and never have been.

The ER nurse told me that j tubes clog a lot, and that they pull out even more often than they clog, and that they get people with clogged or pulled out tubes in there several times a week. The doctors on the other hand are trying to say that I don’t know how to take care of a feeding tube and have implied that maybe I shouldn’t be allowed to have one. They want a social worker to “investigate psychosocial factors” making it hard for me to take care of a feeding tube. Meanwhile I’ve done tons of research on feeding tubes, I know more about them than some of these doctors do, I am better at taking care of them than my staff are, and I am the one constantly forcing staff to treat my tube properly instead of screwing around. But I get blamed if it clogs or pulls out, even though that’s just what j tubes

But anyway that’s not what I intended to write about.

So I just went to sleep for the longest I’ve slept since I have been in the hospital. I had roommates who never slept and never stopped making noise. One of them had dementia so it wasn’t her fault, she just talked constantly and had been awake for eight days. The other one on the other hand just didn’t sleep, and made no effort to turn down the TV at night, and talked loudly to her sitter (I think they had her on suicide watch) all night long. So I practically never slept.

So I just finally slept. And woke up. And discovered a problem.

I’ve never had much of an ass. As a kid people told me I had no butt at all. When I got fat, I developed a little bit of a butt, but nowhere near what it should be for my weight. The battery for my Interstim device is in my butt. It’s a big bulky battery that they put there because for most people that’s a nice padded region. Well I lost some weight in the hospital because I couldn’t eat without my tube. I am already gaining it back but it was enough to leave my butt more loose skin than fat in many places. So I woke up with the entire area around my butt battery hurting a lot, and right now I’m lying on my left buttock and my side sort of, to try to take the pressure off my right buttock.

I’m going to have the battery replaced soon, likely. I wonder how that will go.

Meanwhile I’m still really nauseated because my body isn’t used to food anymore. So I just got up and gave myself Phenergan, Benadryl, and Zofran combined and I feel almost a little better. My feeding speed isn’t even up to normal yet, but all night I felt like it used to feel at 90 – that sense of waves of liquid flowing through my intestines. Probably something about peristalsis gone wild.

I at least feel better at this instant than I did when I got home, but that’s not hard to do. I was furious at the doctor I’d just talked to (who had pronounced me incurably rude because he didn’t like the tone of my speech synthesizer’s voice, I wish I was making this up, and who seemed to be punishing me for having a clogged tube and having a tube that came out, even though those are common complications with feeding tubes) and I itched all over because I was allergic to the hospital blankets and they were out of hypoallergenic ones, and I was in horrible pain everywhere because of being off of Lyrica and Trileptal while in the hospital. The itching is better now, and the pain is still there but not as bad.

Oh and please don’t write to me giving me medical advice about every single medical situation I write about on here. I don’t need medical advice about allergies or pain right now. I know how to treat them. I don’t need to be told reasons that the Mestinon might not have been working while I was in the hospital when I wasn’t even ON Mestinon in the hospital.

That’s another problem is I came home really weak and exhausted because they hadn’t bothered to continue me on Mestinon while I was there. It’s a medication that helps muscle weakness and it clearly helps me a good deal. I became very unsteady on my feet without it. I’m on it again and already beginning to feel stronger. It seems to really help my neuromuscular condition, whatever it is (hereditary myasthenia or otherwise).

Anyway I feel like hell and now I’ve got the magical disappearing buttock problem. My dad has no butt at all (he refers to himself as “ole buttless” and has trouble sitting for any length of time), I have very little butt for being fat and female. And that’s starting to be trouble. Hopefully when they replace the battery they will take that into account, because I’ve lost so much weight you can actually see the square outline of the battery on my butt now.

I haven’t even had a good chance to greet Fey because I was feeling too lousy and allergic to snuggle before, and I’m still feeling pretty awful. I’m sure I’ll make it through this, but it’s no thanks to the doctor who basically seemed to be trying to punish me for existing. The nurses were as usual excellent, it was the doctors as usual who were jerks. They don’t seem to think a ree-tard should be allowed a feeding tube, they tried to blame me for problems I didn’t create, and they made no allowances for autistic communication styles, choosing to portray me as a rude ingrate because on no food and no sleep and messed up meds and post-anesthesia mild delirium I couldn’t communicate perfectly. (Actually there was a long period after anesthesia when I lost the ability to type at all and could only use picture symbols, thank the gods for Proloquo2go and its most advanced interface that gave me the ability to say whatever I needed. Then when I became able to type I couldn’t alter my standard autistic communication style in the slightest. And I was punished mercilessly for my so-called rudeness, they made no allowances whatsoever for being autistic and heavily drugged and sleep deprived and half delirious and no explanation would suffice. Plus anyone who says the tone of a synthesized voice sounds rude to them therefore the person who uses it is rude, is someone who is spoiling for a fight, not someone who is trying to make any effort to be understanding. I hate when some autistic people try to act like an appearance of rudeness isn’t ever part of autism for anyone, because with language problems yes it is yes it is yes it is and it allows people to treat you like dirt with impunity.)

Oh and some of these doctors knew so little of gastroparesis that they actually told me I wouldn’t need nausea meds because I wouldn’t be eating. Hahahahahaha no. I wish it was that simple. I am always, always nauseated. Always. And being on antibiotics for pneumonia with no way to get probiotics into me didn’t help. Every bit of treatment I got from them was reluctantly given and I was expected to be endlessly grateful that they would treat me at all. And I apparently wasn’t allowed to ask questions or stumble over words, and what words I did use were later used like weapons against me. As in not just misunderstandings but deliberately twisted meanings and head games. It was horrible.

Plus my PTSD was constantly being triggered by what they were doing to my roommate, who they were trying to talk into electroshock treatment because she had severe chronic pain and they were treating it as largely psychiatric.

Fey is on me now giving me the snuggling I wouldn’t accept when I first got home. I feel awful in nearly every way but I think it’s getting better. Getting sleep at all probably helps.

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