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.
Fuck the entire concept of money.
So with a cost of living increase in my RSDI(*) payments, I’m a few dollars over the line where they no longer pay my Medicare premiums. So now I have to pay an extra hundred dollars every month. Which means this feeble attempt by the government to adjust for an increased cost of living? In practice, makes me poorer.
In October, I had an IUD inserted. This is because I don’t have my period. And the lining in there just builds up and builds up without coming out. Which is a big risk for cancer, which runs in my family. Oral hormone pills barely create a period at all, and give me horrific migraines. The IUD gave me one huge massive period for a long time — showing the hormones weren’t doing crap before — and then it’s stopped and I feel great.
My gynecologist neglected to tell me that Medicare doesn’t pay for IUDs. Even for serious medical reasons like, oh, preventing cancer.
So now I’m $1400 in debt, in addition to the $100ish a month to Medicare. And I doubt they’ll let me do the payment plan that is actually right for my current income.
Fuck fuck fuck fuck fuck. Fuck the system, fuck money, fuck everything that practically seems to conspire to make sure disabled people can barely afford to eat. I’ve known since I was a kid that this is no way to run the world but it’s only getting worse.
(*) Most people know of SSI and SSDI. I’m in a weird little program with weird little requirements. You had to be on SSI. And have been disabled before the age of 22. And have a parent die, retire, or become disabled. And then you get something called Disabled Adult Child benefits (it has lots of other names). Where no matter how much income you have you still qualify for Medicaid (in certain states), but you have Medicare as well starting after a couple years.
And the income you get is called RSDI — Retirement Survivors and Disability Insurance. And there are weird little sets of rules that apply only to DAC, but most people in the system don’t know them and try to tell me I’m on SSDI. Which has totally different rules. And every once in awhile they try to cancel my Medicaid and I have to sic Legal Aid on them because nobody listens to a retard, even one who tells them exactly what page of the Medicaid manual to turn to. And Medicaid is important because that’s where my services come from. And for a program disproportionally involving people with developmental disabilities it’s ridiculously complicated to understand. And not understanding can get you in trouble.