6:17pm June 2, 2013

So much anxiety.

Part of it is lorazepam withdrawal probably, since I always go on lorazepam in the hospital to keep from climbing the walls with panic attacks. But part of it is real legit fears about the feeding tube.

One reason I actually take care of it so well is I’m constantly afraid of doing something to it so I nitpick to death what is allowed to be done to it and what is not. And today I was so sleep deprived that I almost yanked up my shirt which is pinned to it. So I decided I can’t pin it to my shirt anymore, period.

So my friend had this giant tube of t shirt material that happens to fit around my belly perfectly when I’m in a sitting position, which I’m in most of the time, either in bed or the wheelchair, I never lie flat because of aspiration issues and I don’t walk much. So she cut off a small tube of t shirt material, I took my shirt off and put it around my midriff, tied the tube to it, and got some safety pins in case I’m standing and need it to be tighter. (When I’m sitting with it pinned, it’s so tight it hurts my stoma. We are thinking of adding some drawstrings eventually.) So the safety pins are attached to the strap on my tank top right now. And for good measure I pinned the front of my tank top to my skirt so that I can’t possibly pull it upwards very far.

I take more precautions more of the time than most people with tubes probably do. I’m with Mad-Eye Moody, constant vigilance. It’s the only way.

Yet I’m being treated like I’m a kid who doesn’t know any better and can’t take care of a tube. I’m going to get my case manager to write them a detailed letter telling them everything I do to take care of my tube and that I am under constant supervision when I use it, and I follow every possible instruction the doctor gives unless it’s totally impossible. (I can’t fricking take meds through the g tube. Totally impossible. The idea that taking meds through my j tube is what clogs it is really a remote chance given the clogs I get out are always food clogs, which I don’t know how they form but they do. I flush it constantly with hot water and sometimes with coke followed by lots of hot water to remove the stickiness. Hot water has been shown to be as good as coke in studies.)

I read books on how to take care of my tube. Books the doctors haven’t even read. I read scientific studies about GJ tubes, J tube care, and feeding tube care in general. I go way above and beyond anything a feeding tube user should ever be expected to do, and what do I get? I’m just too stupid to have a tube and don’t understand how to use one. Never mind the research shows that J tubes clog constantly and GJ tubes are sketchy enough to still be controversial because they develop all kinds of problems. It’s all my fault. Somehow.

I’ve got to fight them or next time it clogs, and it will clog, they won’t replace it, they will tell me I’m too expensive and too incapable of caring for a tube and I will die or something. That’s my fear. People around me tell me that despite my high anxiety levels, the concern itself is totally justified 100% based on the behavior of some of these people. I hate the unfairness of it. It just galls me. I am not doing anything to my tube that a person without cognitive impairments wouldn’t do to it.

But I do have another fear that I’m almost afraid to voice. I’m very prone to delirium. The more often you have it the more often you get it, because it’s basically a form of brain damage. I’ve learned all kinds of ways to fight mild delirium. But severe delirium… I once tried to pull out a Foley catheter when I was delirious. And they refused to restrain my arms because they said if I could ask to be restrained I was of sound mind, even though it was one of those blips into semi-lucidity that are actually a normal feature of delirium and I was still hallucinating wildly and having seizures and disoriented.

I’m hesitant to voice the what if I get sick enough to get delirious question because on the surface it confirms all their fears that I would pull out my tube and stuff. But of course people without cognitive impairments become delirious when they’re sick too. But I know I’m treated different already so it’s scary to talk about.

I’ve been a wreck today. What happened to my roommate in the hospital was really triggering and once I became triggered and somewhat disoriented from anesthesia and meds, they treated me like shit instead of reassuring me that things were fine. I mean the nurses were mostly great but some of the doctors were being horrible. You know, the thing where they have impossible expectations about autistic people’s social skills when we are at our worst cognitively and can’t modulate anything not all or figure out WTF they think we are doing wrong or predict when they will suddenly get furious at us for innocent statements and stuff. Plus a heaping dose of other WTFery.

I am so scared of hospitals.

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