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12:30am March 21, 2012

Wow I thought that was never going to end.

Exactly how much phlegm is it possible for lungs to produce? I just spent over an hour coughing. Pretty much straight through. And I appear to have injured something doing so. Again.

And joy. It looks like the pollen count will double in the next few days. Bronchiectasis + seasonal allergies = ~loads and loads of fun~. (Is that the right way to use sarcasm markers? I feel weird doing it – it breaks a few of the rules my brain established for me before I could tell what words were for. But I also love the idea of making sarcasm more readable to people who have trouble spotting it.)

This is another reason it’s important for me to not encounter extra sources of overwork. Longer explanation:

Bronchiectasis means one of my main airways is somewhat damaged, so I simultaneously produce more phlegm than usual, and have trouble expelling it. If I don’t expel enough of it, I get infected. If I get infected, I risk more of the same damage. If I get more of the same damage, I get more infections.

That vicious cycle ends in death if you don’t interrupt it by actually treating it. Actually treating it, in my case, means inhaling lots of 7% saline (which I have to make myself using a pressure canner to sterilize it, because Medicare doesn’t like people who have bronchiectasis without also having cystic fibrosis, and medical companies price the stuff way too high for fancy saltwater). Which thins out the phlegm, which means I don’t have to cough all day just to expel a pinhead worth of phlegm.

But. Even with treatment I still have to cough all day long. And coughing all day long is really fucking exhausting when combined with my stamina impairments. (I also get frequent headaches from the coughing, and those trigger migraines.) I’m glad the bronchiectasis isn’t severe, because the mild kind is bad enough.

It seems sometimes like doctors don’t think of it when you have more than one thing. At last count I had somewhere in the vicinity of 20-30 diagnoses, although doctors have told me that to get a body like that you’ll often have one genetic issue that causes a good number of the diagnoses. It seems like I’m the only person who fully thinks through what this + that + the other thing (or as I have heard it put, this * that * the other thing) actually means in combination.

And right now what it means is that I’d really better stop pushing my luck because coughing all day is already sometimes more of a workout than I should be getting. I keep writing down the reasons because maybe that will make me think twice before jumping at the next chance to torch my body.

Because seriously. After all that coughing just now I’m tired enough that my arms and legs are weak. But I can’t not cough because that’s worse.

And no, I can’t take mucus thinning meds either. Because Medicare categorically denies every medication or treatment in that entire fucking class if you don’t have cystic fibrosis as well. Cystic fibrosis is the most common cause of bronchiectasis in the USA. But this leaves anyone who has it because of lung infections, AIDS and other immune issues, vaccine-preventable diseases, etc. in a tough spot.

Which, yes, means it’s screwing over poor people, people of color, gay people, disabled people, and anyone else any more likely to be in those positions or experience lack of proper medical care. I got it from months of medical neglect. Anyone remember my asthma crisis years ago and all the shitty treatment I got in emergency rooms? That turned out to be because I was sick and nobody noticed because they were too busy yelling at me for failing to feel better from asthma treatment. And after that, suddenly a CT scan showed the damage. After I got a pulmonologist who wasn’t an asshole.

Anyway. Yeah. Everything is exhausting right now. And Medicare sucks donkey balls.