1:46pm March 31, 2013

So I get woken up at seven someting innthenmorning

youneedacat:

adelenedawner:

youneedacat:

So that this med student from hell can try to talk me into not having the procedure or something.

What. The actual. Fuck.

Apparently the rationale is that I might as well not do anything because there’s a chance the procedure might not work. Of course there’s a chance it might not work. But this procedure is standard for this particular complication of gastroparesis along with other complications I’m having. I know people with way less severe gastroparesis than me who have this procedure done.

He stopped double talking only when I got my DPA on the phone with him. Then he started telling her how it wouldn’t work. But also how she’d obviously done her research and yes it’s best practice but I shouldn’t do it or I don’t even know what the fucking hell.

He of course is not a gastroparesis expert nor is anyone who’s been consulted on my case. But ever since I was in the emergency room people have recommended exactly this procedure because they saw what was happening and it’s the least invasive option to save my life at the moment. (There are really intense invasive things that can be done if this doesn’t work. I’d rather not start with those, thank you, considering they involve things such as cutting out my entire stomach. Which is permanent. If this procedure doesn’t work it can be reversed. I know all the many ways it might not work both from doing the medical research and looking at people’s actual experiences. It’s still my best fucking bet for not aspirating as often.)

WTF do these people want me to do? Oh yeah I forgot. Retards don’t need feeding tubes. I still remember the way the nurse laughed a little when I said my wishes were for all measures to be taken to save my life. This place is hell. What scares me are all the people without a good advocate to protect them. And they die. I know they die because I know people who quit working here because they couldn’t stand it anymore.

What the everloving fuck is going on at that place??? Is this the same place that’s trying to limit access to social media???

Same place but turned out that was a program designed to limit employee web surfing that ended up on the wrong wifi. But this place sucks. Most hospitals do. Understaffed even when there’s good people. Messed up. Too sick to explain this moment. But culture of death here? Disability hate? Yes. This is the same place that tried to refuse me entry because I didn’t have a 24-hour staffer willing to stay with me from my DD services agency. That says it all. And they think its better sometimes when ppl die. Healthcare professionals don’t admit their bias but they’ve found they think our quality of life is terrible at the same Time we think ours is fine. It influences them. This is why I got into disability activism. I somehow never thought it would be me again, in the position of being treated as better to let me keep aspirating than try a G-J feeding tube.

They’ve talked to me what a huge choice it is. I made the choice easily months ago. They been talking feeding tubes since I was first diagnosed. No surprise here. They tell me it might not work. They tell me consider alternatives. The alternative right now is pneumonia and death. They tell me all this bullshit. Underneath the bullshit is ideas they aren’t willing to admit they have.

Ideas like: No quality of life. Better off dead. Let things take their course. No matter what we do she’ll get sicker and sicker and die. So might as well do nothing. Pretend it’s not happening. Pretend the ground glass appearance of my cat scan is just a sensation I imagined. Pretend pretend pretend.

But I am a real person. If I have any say left in anything I won’t let this happen. Not directly. Not indirectly. I am real and that means I am worth something. Regardless of disability. Regardless of health status. Worth the same as anyone else. That’s what I been saying for years. I’ll keep saying it forever. Whether its me, Ashley X, anyone.

Hell I explained it without trying. Because I’m mad. These ppl are horrible. Both the blatant liars and the ones who can’t see their bias killing sick and disabled ppl, as well as any of the myriad other ppl worth less to them than their generally white male able bodied selves.

It sucks donkey balls to fight this when you’re sick tired and vulnerable. I understand why ppl give in. But I won’t. Can’t. Not for me. Not for anyone. And webmuskie is my power of attorney. So if I lose my say she calls the shots and she is working damn hard to keep me alive in this mess. I worry for hose who don’t have a webmuskie.

Notes: