This post Rated G[eezer] for health-related whining ⚠️
I was supposed to be having a bowel resection surgery tomorrow, but I will not be. My asthma flare is continuing only marginally abated by prednisone. I talked to my pulmonologist yesterday and he said do another week of prednisone at 40mg, and switch back to the $340 inhaler because it’s the strongest inhaled steroid. Fucking price gouging drug manufacturers who have you over a barrel. There is no alternative, I asked.
Also the prolonged asthma flare is still flaring my mg. Prednisone is helping that flare, but the fatigue from coughing and being short of breath is increasing it.
Prednisone side effects this time: mood nosedive, anxiety spike, insomnia, oily skin, appetite increase, weight gain, round face, red complexion, and general all-around unhappiness.
Silver lining: at least this means we can have @anbu-legacy writing day on Sunday after all, and I don’t have to miss Halloween 🎃
I have been awake a half hour and have already entered anti spoons territory. No spoons left to eat the cheese, so I’m just staring at it while the prednisone eats a hole in my stomach.
And now for something completely different: pneumonia! *slow clap* Antibiotics as of yesterday, and I’ll be starting to taper my prednisone on Tuesday. The MG is playing nice on 40 mg of prednisone, so we'll see what happens when I start dropping it. Wish me luck!
You disconnect your ventilatory assistance long enough to go get something from the kitchen, and by the time you get back to your seat, you are far too breathless to eat it.
Let me explain. I had a chiropractor appointment today. I love my chiro. He’s one of the good ones, who actually listens, doesn’t try to sell you on stuff you don’t need or lots of lengthy treatments, and actually gets my complex medical issues. Like today, I hadn’t seen him since January, and he remembered that my immune deficiency is a B-cell problem. I’ve met MD’s who can’t keep that straight.
So anyway, after we discuss my cast and my achilles tendon issues, and how my cast is throwing my gait off because it makes one leg longer than the other, among other things, and that’s whacking my back out, he does some back adjustments. Then he squeezes my achilles on the left side (the side without a cast), and I just about kicked him in the balls. To his credit, he didn’t know how painful I am there. So then he does some deep pressure things to the back of my knee where the other end of the tendon lies, to release it a bit.
Despite my nearly levitating off the table, I managed to keep my voice down and not swear. This wasn’t the part where I scared people.
The next part was.
As I’m getting up to go sit on the other table so he can adjust my mid back, I mention that, oh yeah, I have a nasty new lung infection thanks to my immune system that doesn’t know how to be an immune system, and that I’ve been coughing really hard, so my ribs and shoulders are sore. @saunterleftside was in the room because he’d had his chiro appointment right before mine, and we explained the airway clearing I’ve been doing with the hypertonic saline nebs and the postural drainage and percussion (PDP). Dr. Thomas then demonstrates he knows all about that.
After the mid back and hip adjustments, I got a little breathless. So he got out this OMG massive two handed vibrating massager thing (this is NOT a sex toy, it’s a medical device. I think it would break your delicate bits if you applied it there) and asked if it was ok if he applied it to my back a bit. I was sitting up while he did this. And wow. OK, that worked. Within 30 seconds of him applying it, I was mobilizing junk from my lungs.
With deep, resonant, painful-sounding, horrible coughs.
I asked if he was sure he wanted to do this, and he said, yes definitely. So he thumped my ribs with his electric thumper and Ryan handed me tissues and I coughed up horrors for a good 15 minutes.
At one point the worried receptionist appeared with a glass of water, which I consumed, and then Dr. Thomas resumed thumping the front of my ribs (he’d moved on from the back) and I resumed coughing.
Afterwards I caught my breath, we chatted about a few things, and when I asked if this meant I could get out of doing tonight’s PDP with DK, he told me definitely not. Oh well.
So anyway, DK and I are like, “Damn, that thing’s effective. We should get one of those for home.” And then we go to leave.
When we’d arrived for our appointments, the waiting room had been empty.
The door from the treatment room I was in goes straight to the waiting room. There are now four or five very alarmed, very serious looking people in there. They all turn to stare at DK and me as we head for the exit, undoubtedly trying to figure out which poor bastard was dying in the other room, and what the hell Dr. Thomas had been doing to him
And that’s how I scared a waiting room full of people today.
Yesterday’s out-of-spoons was the presage to today’s oh-shit-I’m-getting-sick-again. Which I’m really not happy about. Nebulizing a lot and hoping I can get a decent sputum sample out so they can culture it, because the doc said no antibiotics for me without a culture first.
In other news, I feel icky and sorry for myself, and my lungs hurt.
Since I talk about being sick so often, here's the list of reasons I have so few spoons to play with:
CVID — Common Variable Immune Deficiency. This is a Primary Immune Deficiency, something fundamental in my immune system that just doesn't work right. I was probably born with it, although I wasn't diagnosed until I was over 30. In the immune system, B cells in the bone marrow make antibodies called immumoglobulins, or Igs. This is how your body recognizes and fights infection. They are the bouncers that check IDs to see if, for example, pneumococcus bacteria are on the banned-for-life list. There are several types of Igs, like IgA, IgM, IgG, and IgE. My B cells make defective antibodies, especially defective IgG, and it doesn't make enough of them, so my bouncers are either off having a cigarette, or they are taking bribes, or they just can't be assed to check the list. They are like, "Sure, bro, party is down in the lungs, go on in," when they ought to be calling the cops. Because of this, I don't make antibodies to a lot of vaccines, and I get a lot of infections, especially in my lungs and sinuses. I have done so all my life. I have scarring in my lungs as a result. CVID also causes chronic fatigue and joint pain, often pals around with autoimmune diseases but makes it hard to detect them, and can make you susceptible to lymphatic cancers.
Bronchiectasis — Scarred areas in my lungs from repeated infections where mucus collects and becomes a reservoir for further infection.
Tenacious Sputum — Sounds like a nasty MC, but really it just means the mucus in my lungs is particularly sticky and hard to clear. When I was a baby they thought I had cystic fibrosis, but I tested negative for it. Yet another factor in my many lung infections.
Asthma — Diagnosed when I was only 9 months old. Complicated by the CVID, because every time I get a chest infection I also get an asthma flare, and every time I get an asthma flare it takes weeks to recover.
Bronchomalacia — Weak, flimsy cartilage in my lungs, so when I exhale the small airways don't hold their shape. It's like having to use cooked spaghetti as a straw with your juice box. Contributes to infection because it makes airways harder to clear. Causes occasional lung pain.
Allergies — Because while my IgGs might be shit, my IgEs, which have basically no use in most modern humans, are in overdrive, declaring all kinds of innocuous things to be dire threats. They are like the FOX News of the immune system. OMG pollen! OMG bell peppers! OMG shellfish! OMG cat dander! OMG dust mites! OMG mold spores! OMG sulfa drugs! We're all gonna die! Panic! Panic now!
Fibromyalgia — Widespread chronic pain and fatigue. Recent science suggests it's a nerve disorder. Comes with brain fog that makes me forget words and space out mid-sentence, and generally makes my tendency to distractibility worse.
Joint problems — Some kind of arthritis that causes redness, pain and swelling, but since I have CVID, which causes false negatives on a lot of tests for autoimmune problems, it's hard to diagnose. Plus it could be the CVID itself causing it, as CVID is a known cause of joint pain. Worst joints: hands, feet, shoulders, hips, and knees. I also have damaged cartilage and osteoarthritis in some joints, because why have only one problem when you can have two or three?
Migraines — Headaches with, in my case, some really irritating related symptoms like blurred vision that lasts for days, nausea, or the phantom smell of stale cigarettes. I don't get bad ones often, but when I get one with all the trimmings, it can be disabling.
Hypothyroidism — Maybe autoimmune, maybe not. I've had it for years and am on a stable dose of replacement thyroid hormone, so I mostly don't worry about it.
Sleep Apnea — I sleep with a CPAP. It's unsexy, but it's better then snoring so loud you wake your housemate on a different floor.
SSS-type dyslexia — I see moving letters, and black text on a white background tends to get weird colored shadows. Especially bad when I'm tired. When the words start turning blue as I'm reading them, that's when I know it's time to close the book and go to bed. It means I have a really slow reading speed, and reading is tiring. Ironic in a writer who loves to read.
Endometriosis — it was extremely bad when I was living in my birth-assigned sex. It ate through my large intestine, so I have had a couple of bowel resections. It destroyed my ovaries and fallopian tubes and uterus, and damaged my bladder. It's even on the exterior of my left lung. Four laser surgeries and a hysterectomy later, I transitioned to male. Testosterone seems to have helped a lot, but I still get pelvic pain.
Also I often get light-headed when I stand up, and get a racing heart, so that is probably something I ought to get looked at but so many other problems take precedence, and it's mostly a minor annoyance.
Also I'm kind of ADHD, but I've never been formally diagnosed. Pretty sure I'd meet the criteria if I wanted to get treatment, but I'm on disability due to all of the above, so I can sort of live with being distractible and scattered. Even if it annoys my friends.
Anyway, that's what's wrong (medically) with me. Now you know. Feel free to ask if you have questions.
