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1:50pm March 24, 2013

At least I’m going to see my pulmonologist tomorrow.

My DPA wants to ask her to put me on oxygen. That would let me get more air when my breathing is weak, without using the bipap during hours I’m more likely to aspirate. And I could take it with me to doctors appointments and maybe be less weak when I get home.

Might need a continuation on this course of antibiotics too. My lungs hurt like hell and my phlegm turned a deep, bright green much darker than last time. I’m afraid going off my antibiotics when my old prescription stops, will be the equivalent of stopping in the middle of antibiotics and breeding resistant bugs.

I know I’ve been talking a lot about medical stuff. But it’s unfortunately a big part of my life. And I very much want to get out the idea that things like this are actually pretty normal in a lot of people’s lives. And that there’s nothing about us that somehow warrants assuming we won’t get better and are therefore worthless. Two assumptions in a row the first one sometimes inaccurate the second one always.

And my DPA and some of my other friends have worried that this is exactly the problem with my doctors — not getting oxygen, not going faster with treating the gastroparesis, lots of things. That basically they have little superstitions about disabled people whispering in their ears whether they like it or not — “you might as well let people like this die, they have low quality of life” “things may as well take their course”, “they get sicker and die anyway no matter what you do,” piled under a mountain of denial that makes it impossible to directly confront.

But I can at least confront ideas like that here. It’s what I’ve been trying to do one way or another since I began blogging but it’s become more personal because less energy means less way to control subject matter. Those ideas are totally false. My life hasn’t ended just because I’m in bed all the time and get sick a lot with nausea and lung infections.