Sibylla Bostoniensis

I had been doing so well. (Yes, that's foreshadowing.)

I had done my own laundry. I had done my first substantive (though still quite basic) cooking project in 1.5 years. I washed my hair by myself. I even went on a small walk in a park on an unseasonably warm day. (Not all at once of course.) I could actually sit up on a chair for a whole half hour. I was getting physical therapy.

I had my follow-up appointment with my physiatrist on February 7th. My previous epidural was mid-September and I was told to anticipate that it would last about 3 months. Here we were at 5 months, and I was still going strong so it looked like maybe whatever was wrong had a chance to heal once the inflammation was controlled by the epidural.

Whelp, it turns out I was not actually getting better, it was the steroid epidural still working. Which it stopped doing a week ago Saturday. Over the course of the last nine days I've steadily regressed from being mostly resuming my life to being almost bedbound with pain. I went from "slightly sorer than yesterday" to "rather achey" to "oh that part of me hasn't hurt in months" to "that is rather uncomfortable" to "oh, fuck" between Sunday and Thursday, whereupon I called in to my physiatrist's office to request urgent assistance. I had asked back at the last appointment, given that we weren't making a further follow-up appointment, what the plan was if I found myself having trouble again, and he told me to just call in and he'd get me right on the schedule for another epidural, he was good to his word: I'm scheduled for next week.

So that's why no Siderea Posts for February. First I was too busy doing all of the things that I hadn't been able to do for over a year, then all my spoons abruptly disappeared, right during the time that I had reserved for writing.

Le sigh.

I suppose the good news is that now I have a lot of things I need to do and can't really do without enormous difficulty, so I am super motivated to procrastinate which is usually hugely motivating to write. Here's hoping.

There's going to be no Siderea Posts for December, sorry. I've been heads down grinding for the last two weeks on a do-or-die technical project with a hard deadline of today. It got done, I did not die, but it was close. I am definitely not planning on doing any writing. I am going to celebrate my IT triumph with fish and NYE kisses with my sweetie.

(Many thanks to the various people who helped me over on Mastodon storting out the migration of Siderea's Island of Obsolete Technologies, most especially dsrtao and hakamadare and various others I will have to look up to name.)

Edit: I posted this from the new server and it worked, yay!

Got my booster, yay!

I found a slot at a sleepy suburban CVS near a restaurant we like, so we made a trip of it and got yummy takeout. I happened to arrive 10 min early (we allowed for traffic, there was none), there was almost nobody in the store, and I was in and out before my official appointment time.

I've been referred for surgery.

Today was the follow up appointment with the physiatrist who did the epidural. At this point, I'm experiencing approximately a 15 to 20% reduction in my initial presenting pain, but I'm now experiencing pain in additional locations, and parathesias that make nerve involvement pretty obvious, and I'm not any less disabled. So I can stand for maybe 5 minutes instead of 3 minutes, which is definitely better, but doesn't actually move the needle on my being able to do things like cook and take showers.

The initial (and at this point only) steroid epidural was in a single location to identify whether or not that was the sole cause of the problem (it turns out it was not). So the next step is I'm going to be getting a second epidural, because it's going to take a little while to get in to see the surgeon, and we hope that it will provide me with a little additional relief, and also it will leave no stone unturned. But the physiatrist does not anticipate it will provide more than temporary relief at best.

I am low-key freaked out about the idea of having back surgery for a whole variety of reasons, including the fact that outcomes are not necessarily very good, per the scientific literature, but mostly I'm not thinking about it too much. I've seen my MRI, and I've read the lit, and it's not like there's really any other treatments that are any better for what I've got. Indeed, the patient education pamphlets / websites from places like the Mayo Clinic about what I've got are kind of disturbing, in how they focus on how this kind of spine problem is typically a side effect of spine surgery gone wrong, and they harp a little too much on the right way to handle the problem is to not have it in the first place, by not having spine surgery done incompetently. Which, doesn't seem particularly helpful to the people who have already had poor surgery and now have the problem, and it's completely irrelevant in my case, having never had any spine surgery whatsoever. This unfortunate focus seems to be a product of there simply not being much to recommend in terms of treatment; they recourse to saying guarded things like, "some patients find relief from physical therapy" and "steroid injections are sometimes helpful". Other than surgery, that's pretty much the entire list of options. There is this one promising experimental approach to physical therapy that is described in this one paper that is... a pair of case studies. Every review article about treating this condition cites this one paper, and as far as I can tell nobody offers this treatment. The physiatrist didn't know about it.

At least I am generally feeling better about the quality of care I am getting where I am now. It's been over a year, but I'm finally now being treated by actual grown ups, which is nice.

I have to say: the first two medical organizations I sought specialist treatment from, and which turned out to be terrible, both came highly recommended by friends of mine who are men. Where I'm going now, was a recommendation I got from a female physician and another woman medical professional who treats athletes. Yeah, I think I need to stop accepting medical recommendations from men. I really have to wonder how much of the shoddy treatment that I experienced from the first two places was sexism/ageism/healthism. I mean the first p6lace I went, I wound up seeing a PA instead of a physician, and that dude was pretty clearly contemptuous of me from the first second, and I'm guessing my gender had something to do with it. Not sure about the second place; they seemed to be collectively profoundly disordered in ways that had nothing to do with me. I mean, the fact they had to shut down for a few months because they had a pipe burst definitely was not a personal affront, but given everything else we experienced there, tn3270 and I strongly suspect it was a product of some idiot turning the heat off overnight when it was -20°F and then not taking the resulting leak seriously for 5 days, which would have been in perfect keeping with how they handled prior authorizations and intakes. But I do wonder about the physical therapist I saw who was affiliated with them, who was utterly hell-bent on the idea that pain is psychosomatic and was unconcerned with my physical safety. I suppose "unconcerned" really was their brand.

In retrospect, it's kind of surprising that doctor rating sites don't ask the sex or race of the raters, to allow users to filter to ratings only from people of a certain sex and/or race. That seems like a really obvious value-add.

Anyways, I seem to be under the care of people who actually seem to know what they're doing and actually care about outcomes, and do not consider me beneath treatment. Like I said to tn3270, this physiatrist seems to be to physiatry the kind of therapist I try to be to my patients. So at least if I have to go over this particular fall in this particular barrel I seem to have found the optimal team in the Boston area to do it with.

(Reminder: Americans, when you see me talking about my medical situation on the open internet, do not incorrectly generalize from this to think that I think that discussing one's medical situation on the open internet is an okay thing to do under your actual name. It is a risky thing to do, in general, but if you're going to do it, for the love of all that's holy, at least do it under a pseudonym. Issue and risks you may be unaware of discussed at length here previously.)

Today (Monday, August 7th) was epidural day.

The actual epidural was basically totally fine, if understandably unpleasant, and I adore the physiatrist I have. It is embarrassing, to both me and to the profession of medicine, that when I arrived in the procedure room and the physician went over what the treatment plan was for the day and it actually matched the treatment plan he and I agreed to 3 weeks ago, I just about wanted to burst into tears of relief. But that's where we are in this country.

Unfortunately, not all went as smoothly as it should have between those two appointments because of some things going wrong that should not have gone wrong.

At the initial consultation, he had prescribed me a new prescription strength NSAID, and told me that if it didn't work to let his office know, and they would prescribe me a different prescription strength NSAID. Well, a week after getting prescribed it, I sent a message to his office through the patient portal. Actually I sent two messages, one which was the clinical message about the prescription and another medical issue, the other of which was just about scheduling: in the patient portal I saw my upcoming follow-up appointment, for 2 weeks after the epidural, was with a different physician, which is neither what the physical appointment card they gave me said, nor desirable for reasons of continuity of care. So I sent a separate message through the portal for the logistical question, because I know usually the person who answers that is different than the person who answers the clinical questions.

Well, I got a message back from the scheduler saying, oh, no, that had been a mistake, I should be following up with the same physician, and proposing another appointment time. We also had another round of back and forth, she and I trying to sort that out through the patient portal.

Point being, the patient portal was working well enough for me to correspond with the scheduler person through it.

A week later, I still hadn't heard back from any clinician about how my prescribed medication wasn't working, or my other question about medication interactions with the procedure. At this point it's 5 days from my procedure, which is on a Monday, and I have heard nothing back from them about my clinical issues and also I have accumulated a third one to discuss with them. Between my sleep and work schedules, I cannot get them on the phone. So I write a second clinical message through the portal about my clinical questions, and have tn3270 to call on my behalf and ask what the hell is going on politely for them to check my portal messages. The admin person that he talks to on the phone says she'll have a nurse get right back to me, and as I instructed him to, he explains that they really need to try and reach me in writing because I'm not real available by phone what with being a clinician myself, but if she really can't she needs to leave a voicemail and not assume that she can reach me in person.

I hear back nothing.

That was first thing Thursday morning. So he calls back on Friday morning, and explains we haven't heard anything back, so the nice admin lady opens my chart and finds out that the nurse had in fact written me a response Thursday morning. This response never arrived in my portal inbox. She helpfully read it to him over the phone and he wrote it down and sent it to me, and it was useful intel, but at this point it was the last business day before my procedure, and there was no opportunity to trial me on a new NSAID.

Furthermore it turned out to have been a good thing that I notified them I was back on ibuprofen, because I couldn't have ibuprofen on the day of the procedure because it causes an increased risk of bleeding.

But that meant the drug I had been using to manage my pain and make me basically ambulatory, or at least as ambulatory as I've been which is admittedly not very much, and allow me to sleep in upto 5 or so hour chunks, I couldn't have on the day that I needed to get to and ride in a car for half an hour, and then make it from the car to the clinical office about a city block's distance away from the parking lot.

They said I could take the NSAID that they prescribed me, because it didn't have the same risk for blood thinning.

But the problems with the NSAID he prescribed were 1) it didn't have much effect on me - not none, but certainly not as much as the ibuprofen, and 2) it was an extended release medication that he prescribed precisely so that I could take it before bed and then sleep through the night and wake up before it wore off, but in practice, it turned out what little effect it had for me wore off in 3 to 4 hours - and then you're not supposed to take any other NSAID for the next eight to nine hours, i.e. the rest of its nominal 12-hour extended-release duration.

I had managed two trials of the new NSAID, one for about 24 hours, the second one having me calling a pharmacist five hours later going, "No really, how soon after having taken this can I take ibuprofen? Okay, but what if I take ibuprofen anyways? I understand you can't actually condone this but what are the actual risks? What's the harm reduction approach to this?"

So for the day of the procedure, I could not take any medication that actually substantially worked, and could only take a medication with modest pain relief, that only works for about 3 to 4 hours, and which I am not supposed to take any other NSAID with for the following 12 hours.

This meant I got to take my last dose of ibuprofen before bed last night, and then when I woke up from the pain, I could not take any more ibuprofen to go back to sleep. I could have then theoretically taken the other NSAID, but then I would have blown its therapeutic value to get some more rest, and have nothing to get me through the car ride and subsequent wheelchair ride and subsequent waiting room wait to get me into the procedure room.

So I got a total of three and a half hours of sleep.

I had the foresight to try to hit the medical literature to find a blood plasma concentration curve for this particular NSAID, diclofenac, to try to figure out when, precisely, I should take it for maximal effect at the point I would be in the car and trying to cross the medical campus, but I discovered that nobody wanted to show me that curve because it wasn't actually relevant. Apparently diclofenac is really weird medication, and its efficacy curve is actually pretty strongly divorced from its blood plasma curve. I am told that it is rapidly absorbed by tissue other than blood, concentrating in the synovial fluid of the joints primarily (which is why it is often recommended for arthritis and I think is why it was prescribed for me, under the working hypothesis that my problem is my spine is f'ed and really the spine is one big joint), and secondarily in muscle, and that what little is left over in the bloodstream is cleared out in about only 3 hours; the extended release effect is because it seeps out of the synovial fluid or directly is in the muscular tissue it affects.

Finding out that it clears out from the bloodstream in about as much time as it stops working on me is certainly suggestive of why maybe it wasn't working on me. I dunno. Maybe it doesn't do that synovial fluid thing on me, or maybe being in my synovial fluid isn't where it needs to be in me to do me any good. Or maybe it just doesn't work on me for some weird ass reason, like I'm an extensive metabolizer of it (note to self: look up its pharmacokinetics for kicks and giggles.)

So from there, I asked around who else had any experience with this, and got some great advice from somebody with a lot of experience with diclofenac, and had compiled exactly the data I was looking for.

So I timed my one diclofenac dose so it would hit right around when I got into the car. This was splendid, but also kind of infuriating; from the front door of my apartment to the front door of the doctor's office was about an hour. They had me arrive half an hour before my appointment, which I spent lying on the concrete floor of their waiting room on a yoga mat. That's an hour and a half; I had had to take the dose 2 hours previous to leaving the house so it would hit while I was getting down to the car. So I was 3 and a half hours in by the time somebody took me in to check my vitals, and that's when it started wearing off. By the time they were asking me to get up on the procedure table, I was in enough pain to be really quite philosophical about someone stabbing a needle into my spine.

After the procedure, while I was being monitored for adverse reactions, I chatted with the staff and asked what had happened with the portal messages. It emerged that there were two problems.

One was that simply, the physician had been out for a week, and apparently it had not occurred to anyone to cover his inbox while he was out. I am inferring because of the fact that I only have one address to send any messages to, and it's labeled the physician's name, and yet the scheduling person got back to me when I sent a message to the physician's address, there's some sort of message triage going on, where schedule questions go to the schedule person and clinical questions default to going to the physician. So the nurse didn't know that there were any questions waiting in his inbox that needed answering, due to failure presumably of this triage process to notify the covering clinician.

The other problem seems to be just a good old-fashioned IT snafu. I now have a printed out copy of the message that the nurse wrote in response to me last Thursday, which still has not arrived in my patient portal inbox. They were gobsmacked to find out that it hadn't been delivered. "You mean you hadn't received an email notification you had a message?" "Oh, I hadn't received the message in my portal inbox at all - I've been logging in to check the inbox everyday."

It turns out to have been incredibly useful, diagnostically, in the IT sense, that I had successfully corresponded with the schedule person, demonstrating that when I use the patient portal I can both send and receive email with the office of my physician correctly, in the exact same time frame this problem happened, even.

This is all terrible of course, but they're still head and shoulders above the fiasco that was the last physiatrist's office, so I'm going to keep them.

I learned many interesting clinical things during this procedure. They told me that if I experienced immediate relief, that's not the treatment per se, that's the local anesthetic they used on me to perform the treatment, and it would be wearing off in a few hours. (I did not experience immediate relief. I got one of the other less pleasant possibilities, though not an awful one. "You could sit up now if you want." "DO NOT WANT.")

It was explained that I might start experiencing relief in as soon as 3 days (Wed?), probably within 5 days (Fri?) if it was going to work at all, possibly in as many as 14 days, at which point if there's no benefit we decide this didn't work, and try something else. That's the day of my follow-up appointment, which is mercifully telehealth so if it didn't work I don't have to have another excruciating commute.

Also interestingly, since what I got was my spinal canal filled up with dexamethasone, it was explained to me that one of the side effects of getting a whole lot of steroid is that it can cause a facial flush. Which puts a different spin on what I observed happening last November, when I was given emergency IV steroids (along with antibiotics) in the ER for the face and neck infection. The next day my face and neck were quite red, and I thought that was the infection running rampant. The whole point of giving me the steroids, after all, was to keep me from being asphyxiated by the swelling in my neck before the antibiotic had a chance to do any good, so I just thought the redness was the microbe that was munching on me temporarily having the upper hand. But no, apparently, it was the steroid itself doing that.

Another thing I learned was that there is no reason not to take ibuprofen after the procedure, except for the fact that you're not supposed to take it to the same time as the diclofenac. Since by the time I was back in the car it was more than 4 hours after I taken the diclofenac in the first place, and it had long since worn off, and the risk of taking both is gastrointestinal, and the diclofenac is presumably long since out of my gastrointestinal system at that point, and also I was on prescription strength famotidine which had initially been prescribed to me entirely for the purpose of buffering my gastrointestinal system against heroic doses of NSAIDs, and I don't generally get gastrointestinal problems from NSAIDs, I took ibuprofen in the parking lot before we left.

The car ride back was actually kind of fine, which I think maybe had to do with the local anesthesia. The actual walking bits, and riding in the wheelchair, and waiting in the lobby for the car to come around, and getting out of the car and getting back into my apartment and getting my shoes off: not fine at all.

I spent then till now pretty much just laying on my bed; my next big adventure will be going to the bathroom and getting dinner. My back is, not unexpectedly, sore, but not in the location that they stabbed me. My middle back does not feel great, and the shot was very low lumbar. But I gather this is within parameters.

My shoulders hurt, but that precedes the procedure: I had to spend a lot of time - like almost all of it for a while there - lying on my side, because no other physical position was tolerable.

Anyways, now we wait and see if it works.

When I randomly got a massive IV dose of dexamethasone in November due to an unrelated condition, it temporarily relieved almost all of my hip/leg pain - except the initial site of pain that started 10 years ago, which I am convinced is actually something wrong with my actual hip, and not my spine at all. That's kind of my bet what's going to happen this time, too. But that would be something of a win, if it allows me to get physical therapy for the hip.

I'd started trying to book medical and other appointments that I've had to miss over the last year because I can't sit in a chair, e.g. dental care & eye care, in the hopes that this is going to work and I will be able to keep them. I figure if it doesn't work I can cancel the appointments.

Tap tap tap is this thing on? Okay back to dictation. Only now I'm using the fully privacy-violating Google Assistant speech to text functionality of my Android phone, because I am not quite at this moment up to using my computer for reasons that will shortly become clear.

Last week was pretty exciting. The beginning part of the week was exciting because of good things, about which I'm not at liberty to tell you, but then, in some order that at this juncture is hazy, one of my hosting companies' data centers caught literal fire, and also tn3270's employer had a round of layoffs which he survived but was unnecessarily exciting and stressful, and also a literal fire alarm in my apartment building, requiring me to grab my cane and hump out of the building as fast as I could manage and then not having anywhere to lie down while waiting for the all clear.

I rolled up on the end of the week feeling enormously satisfied with everything we had achieved and soldiered on through. I was pretty tired with accumulated sleep debt; I had several days of poor sleep due to reasons like the upstairs neighbor being noisy, a new minor medical problem that took me a couple of nights to figure out how to disarm, and my neurology just deciding to pitch a (non-literal) fit for no obvious reason. But I was guardedly optimistic about my musculoskeletal health, which had been slowly improving, to the point I had suggested to tn3270 midweek that maybe I resume one of the cooking duties the following week.

Then, getting ready for bed Friday night, I apparently did something terrible to my back. Heretofore, while various doctors had opined that some or all of my pain in my leg and hip where due to bad!wrong things happening in my spine that are manifestly obvious on the MRIs, none of the pain had presented at the location of my spine; this new development, however, was very much where my spine is, and it made walking - already pretty darn challenging - excruciating, and sleep extremely difficult.

Also, my body decided to respond to the stress of all of this by initiating menstruation on Saturday, and, for what reason I don't know, I proceeded to have the most ghastly, painful period I have had since I was an adolescent. So: original crippling hip pain, new catastrophic back pain, and the worst menstrual cramps I've had in almost 40 years.

Come Monday, I could not figure out a physical position to get into whereby I could actually get my face on camera to see patients that I could tolerate for more than 5 minutes, but it didn't matter because I was so wrecked from at that point about a week's worth of sleep debt, that I was in no condition to be practicing psychotherapy, and had to cancel full day of patients.

Whatever it was I did to my back, it seems to be improving with rest, but it also seems to have undone all my progress in my hip, which is now worse than it's ever been.

Fortunately, back when I got that second opinion, I promptly (or at least, as promptly as I could given the insanity that is my insurance company's directory of providers) booked an appointment with a new physiatrist. It was a 5-week wait, but that means I saw him today.

The good news is he seems excellent. I like how he practices medicine, I like how he communicates, and I like his treatment plan for me. I only discovered when I got home and looked at the follow up appointment card, which is also his business card, that I had randomly been assigned the head of the department, and I was like, "OooooOOOOoooh, no wonder he was so good, he's the king physiatrist."

Also, the department seems to have great staff, by which I mean they actually know how to do things like put in referrals for procedures to my insurance.

Since the only day of the week that the doctor does procedures - in my case an epidural - is the day that I also see patients, I asked the medical assistant who was doing the scheduling what sort of condition I would be in after I received it, and explained that I saw patients of my own in the evening and was trying to figure out if I needed to cancel my patients for that day. She took this very seriously, and escalated the question to her boss; her boss came into the exam room with us, and offered me an appointment in only 3 weeks, saying something that indicated that I was being given preferential treatment as a professional courtesy to a fellow medical professional.

I have very mixed feelings about this. On one hand I feel a little bit guilty about that; on the other hand, I kind of feel like I qualify just on the basis of how debilitated and in pain I am to be seen somewhat urgently. So if playing the medical professional card gets me to the front of that line, I guess I'm okay with that. I'm certainly not refusing the appointment.

(And by the time the medical assistant's boss came in, I had already decided that prudence and responsibility dictated I cancel my patients on epidural day because I wouldn't know what sort of state I would be in, and said so. And they were like yeah, if you think best, but we're still getting you in soon.)

So it turns out, I'll be getting the epidural almost a year to the day all this started.

The follow-up plan is a telehealth appointment, which is excellent.

The bad news is, the place I went for care today was a half hour away (tn3270 drove me, with me laid out in the passenger seat with the back all the way down), each way, plus is a huge enormous complex of buildings with a large parking lot, most of the handicap parking spaces of which were full by the time we arrived. They scared up a wheelchair to get me from the front door to the office where I was being seen, which was also excruciating, but more efficient than walking. I did the yoga mat trick (now with back pillow) and camped out on the floor of the waiting room until they were able to move me into an exam room - which to their credit they did exactly on time - and then there was another excruciating wheelchair ride back to the front door to leave, and once in the car, two stops, one to pick up dinner, one to pick up the prescription at the pharmacy*. All of this, on approximately 3 hours of sleep, because of how much pain I was in all night, due to pushing myself too hard before bed, trying to get everything ready for today. Eit.

So now, I am in a world of hurt. I feel like someone has taken a baseball bat to my hip, and standing up feels like crushing something in my back.

Also exhaustion. So much exhaustion. Also my gastrointestinal system is extremely mispleased by all these goings on, and decided to get in on the riot.

And I'm going to get to do it all again in 3 weeks. I understand the whole driving a needle into your spine thing isn't too pleasant, but I'm way more worried about the toll on my body of getting there and back. Though by "worried" I mean grimly resigned to, because I need to do something about this and this seems like a reasonable something to do. And in that I'm feeling pretty optimistic. I feel like finally I'm in good hands, and even if our first approach doesn't work, we've already mapped out an approach for what we'll try next if so.

Something I liked about this physician is that after getting up to speed on my case, it was really clear that ultimately surgery may be on the table. This department has a bit of a specialty in avoiding surgical interventions and being conservative about treatment, but the approach that he proposed was very informed by, "if it subsequently turns out you need surgery, it will have been good to have done it this way". And if it comes to that, they're apparently attached to some famously good surgeons.

* Which they screwed up, a fact we only discovered upon returning home, so tn3270 went out again without me to get it corrected. The answer to the question of how I've been managing has been he's been taking care of me: he's doing all of the cooking, all of the cleaning, all of the laundry, hauling my carcass around to medical appointments, running my errands, bringing me treats, so on and so forth. ❤️

PS, oh and yesterday I got an email from the landlord asking if I had, perhaps, sent the rent? I use an auto bill pay service and apparently the check never got there, so last night and today was also dealing with that. Wee.

As you might have noticed I've not been around here much. I haven't been able to sit up at a computer for more that a few minutes at a time since January.

My health has been highly variable of late, in ways which impact my ability to operate a computer; also I have a lot of things on my plate lately, which in addition to being an intrinsic muchness, is exacerbated by my poor health making everything I do take much, much longer. Le sigh.

One can kinda tell my pain level by how active I am on Mastodon: it's my internet venue of last resort, and I can operate it on my phone, lying on my side. Because it's short form, and, I guess because it's construed as a Twitter substitute, it doesn't seem to have any norms around thinking before posting, cogency of argument, or substantiating, it fits better with my straitened capacities.

A small toot-storm I posted about AI some moons ago has gone viral for a second time. My readers here might enjoy it: https://universeodon.com/@siderea/109883198218504351

Other than the general suck of my health and some technical debt I am dealing with, and the stress of trying to do more with even fewer spoons, things are mostly pretty good.

In no particular order:

1) Google Maps' route to the hospital included a very illegal left turn, which we declined to take, and which proved one of those very Massachusetts, very hard to recover from errors. We still made it five minutes early.

2) There was nobody there, at the MRI check-in desk. After five minutes - at my appointment time - I called the hospital switchboard.

3) When the check-in person returned, and checked me in, I explained I can't sit to wait (I am standing there on crutches, and when she offered me a seat, I'd explained), and she offered to scare up a gurney for me to lay on. I don't know if she did or not, but no gurney ever manifested, but, okay, I brought a yoga mat any laid down in the hall.

Pro disability tip: tis better to ask for forgiveness than permission. I had tried to talk to them about this issue in advance and they got shirty with me, so I said, well, I guess I will just bring a yoga mat and lie on the floor, and the person got all upset about blocking traffic, so I said, oh, okay, and then did it anyways. The check-in person was the same way, saying I couldn't bc it would block other patients. (There was literally nobody else there.)

She also said tn3270 couldn't come with me and would have to wait in the waiting room, and I said I needed his help to disrobe, so she then let him enter with me, and then the tech was fine with him waiting at the changing area. (*rolls eyes*)

So yeah, I changed, and then lied on the mat in the hall. A passing medical person said, "looks comfy". I replied, "my disability was not accommodated, so I handled it myself." I think he had the grace to look abashed, but it was hard to tell from the floor.

4) The tech brought me to the door of the MRI room and said, you can put your crutches against the wall here and I'll take your glasses when you get to the machine. "...You can take my crutches when I get to the machine, too." Nope, he absolutely insisted I couldn't bring the crutches into the room, and his proposed solution to getting me there was I could lean on him instead. No idea why. I declined his offer and just staggered there under my own power.

5) I was in the literal same MRI room as last time, but for some reason this tech had a completely different set of resources to work with. This time there was a bolster-thingy for my knees that actually worked, and a mesh gizmo (that I had to argue him into using) to support my injured leg.

My baseline level of pain is pretty high these days, so I'm thankful this time, the MRI didn't make it worse.

6) Something was very strange about the frequency response curve of the headset they gave me, to pipe in distracting music: the bass was painfully loud, and the midlevel and treble was so quiet as to be inaudible while the MRI was going.

So I couldn't tell you what I was listening to, bc all I could hear was the bass, which was competing pretty directly with the thumpier noises the MRI was making.

Hilariously, for three or so glorious minutes of surreal synchronicity, the MRI was both in tune and in time with the music, and I was reposed in a stereophic cylinder of "IV-I-I-I, IV-I-I-I". (Or more correctly " IV ||: I I I IV :|| ")

7) Completely unexpectedly, the film library dude proved true to his word despite how late in the day it was, and we were able to leave with two copies of not only that day's MRI, but the earlier MRI, two CT scans, three ultrasounds, and a set of xrays. I camped out on the yoga mat in the lobby while tn3270 handled it.

8) Film dude also said he could send the imaging directly to the other system, so we're doing both: online transmission and tn3270 hand delivering the disk.

This is good bc I am nervous the physiatrist's practice told me to send it to the reception desk at their closed location. Reception's still open bc the physical therapy practice is still open, but the physiatrists have all decamped somewhere else less moist while the burst pipe is (still) being remediated. I'm a little worried about it actually getting to the relevant party.

9) We actually checked the disks to make sure they had the right things on them. Mac users! Did you know there's a free app in the app store for looking at medical imaging? "Bee DICOM viewer". Flaky as hell, but basically works. I'm advised the "open" item on the "File" menu doesn't work so follow the on-screen instructions to load files by drag-and-drop.

If I can figure out a physical position that allows it (I am typing this on my phone, in bed), I will probably spend hours squinting at videos of my innards.

('pologies, I am finger painting this post on my phone, through an ssh client to my usual emacs environment, so all the finger spelling of a cli, but none of the autocorrect of a phone.)

I'm back to being largely confined to my bed, and using crutches when not. Sitting is v hard.

Apparently I over-did it with physical therapy and pulled muscles in my back. The previous hip problem is actually holding up great. I just can't do anything you need your lumbar process for, which is everything, including coughing and every part of going to the bathroom.

I am being well cared for, and because I've wanted to stay out of stores bc pandemic, my home is pretty well stocked with everything I need. I even, fortunately, roasted the pork for dinner this week the night before this happened. tn3270 did my last few cooking tasks for the coming week for me today.

My access to the internet is erratic. There's no position I can get into which doesn't stress my back which doesn't then stress my shoulders to use my phone or computer or read a book.

I am v bored. Also, being in pain is tiring. Or maybe not having working baco muscles that can hold you upright so you have to compensate with all you other muscles especially arms is tiring.

Anyway, expect me when you see me.

0.

So, the straw-that-broke-the-camel's-back reason I fired my physical therapist earlier in December is that I expressed concern to him about the safety of two things, both of which he blew me off about. One of them was the safety of using NSAIDs to reduce inflamation of injured tissue, and then doing PT while thus medicated. He said that wasn't a concern, and I said I knew people who had used NSAIDs to work through the pain of repetitive strain injuries and made them much, much worse. He said "that's not a thing" and he knew of no cases where anybody ever hurt themselves by using NSAIDs, short of the standard GI problems or choking on the pills.

Uh-huh.

2022 Dec 27: Prevention.com: "Using Painkillers Like Ibuprofen May Worsen Joint Inflammation in Knees, Study Says" (by Arielle Weg) "Researchers found arthritis progressed after four years. ":

A recent study found that taking non-steroidal anti-inflammatory drugs (NSAIDs) such as over-the-counter pain relievers like ibuprofen or naproxen for joint pain due to osteoarthritis, a type of arthritis, may actually increase inflammation. [...]


Researchers set out to see how NSAIDs impact synovitis, the inflammation of the membrane lining the joint that has been found to play a role in progressing osteoarthritis. [...] They followed 277 participants from the Osteoarthritis Initiative Cohort with moderate to severe osteoarthritis who used NSAIDs as their treatment for at least one year between baseline and a four-year follow-up. These participants were compared to 793 control participants not treated with NSAIDs.

All participants in the study had an MRI of the knee, initially and during a four-year follow-up, to track cartilage thickness, composition, and other measurements to evaluate arthritis progression. The scientists found that long-term use of NSAIDs had no benefit, and joint inflammation and cartilage quality were worse at a four-year follow-up, compared to the control group.
[...]

The study’s lead author Johanna Luitjens, M.D., [...] hypothesized that those who are taking NSAIDs may be more physically active due to the pain relief, which could potentially lead to the worsening of synovitis. But, she noted that her research did adjust for physical activity in results. Additionally, it could simply be that though NSAIDs have anti-inflammatory effects, they cannot prevent synovitis. She added that more research is needed in the future.

Also, presented at the same conference, two different studies that found the same damn thing with corticosteroid injections in knee osteoarthritis:

2022 Dec 28: SciTech Daily PR from Radiological Society of North America: "Common Arthritis Treatment May Actually Accelerate Disease Progression" (unattributed):

Two recent studies have shown that corticosteroid injections, which are commonly used to treat the pain associated with knee osteoarthritis, may actually contribute to the progression of the disease. These findings were recently presented at the annual meeting of the Radiological Society of North America (RSNA).

[...]

In the first study, researchers at the University of California, San Francisco included 210 Osteoarthritis Initiative participants, 70 of whom received intraarticular injections, and a control group of 140 who did not receive injections during a two-year period. Of the 70 patients who received injections, 44 were injected with corticosteroids, and 26 were injected with hyaluronic acid. The treatment and control groups were matched by age, sex, body mass index, pain and physical activity scores, and severity of the disease.

MRI was performed on all patients at the time of the injection and two years before and after. The MRI scans were assessed using whole-organ magnetic resonance imaging score (WORMS), a grading system for knee osteoarthritis that focuses on the meniscus, bone marrow lesions, cartilage, joint effusion, and ligaments. The researchers identified osteoarthritis progression by comparing the imaging scores from the initial scans and two-year follow-up scans.

[...]

Statistical analysis showed that corticosteroid knee injections were significantly associated with the overall progression of osteoarthritis in the knee, specifically in the lateral meniscus, lateral cartilage, and medial cartilage.

But! Some good news:

Hyaluronic acid knee injections were not significantly associated with the progression of osteoarthritis in the knee. Compared to the control group, the group who received hyaluronic injections showed a decreased progression of osteoarthritis, specifically in bone marrow lesions.

“While both corticosteroid and hyaluronic acid injections are reported to help with symptomatic pain relief for knee osteoarthritis, our results conclusively show that corticosteroids are associated with significant progression of knee osteoarthritis up to two years post-injection and must be administered with caution,” Dr. Upadhyay Bharadwaj said.

“Hyaluronic acid, on the other hand, may slow down the progression of knee osteoarthritis and alleviate long-term effects while offering symptomatic relief.”

The second study was very similar, and used x-rays instead of MRIs, and found the same thing:

Compared to patients who received an injection of hyaluronic acid or no treatment at all, patients injected with corticosteroids had significantly more osteoarthritis progression, including medial joint space narrowing, a hallmark of the disease.

“Even though imaging findings for all patients were similar at baseline, the imaging hallmarks of osteoarthritis were worse two years later in patients who received corticosteroid injections compared to patients who received hyaluronic acid injections or no treatment at all,” Darbandi said.

1.

Months ago I had occasion to throw down with a bunch of fat-phobic physicians (not mine) over their misuse of thermodynamics a la "calories in, calories out". As best I can tell, none of these people had ever actually taken a thermodynamics class? Do physicians typically take classes in thermodynamics?

Anyways, I yanked their bad physics out of their hands and beat them with it, explaining that is not how thermodynamics works, pointing out what they were saying was effectively modeling humans as both perfectly efficient machines and consistently efficient machines, both of which were, given thermodynamics, wildly implausible, and that difference between humans in efficiency extracting calories from food is a very obvious explanatory hypothesis for differences in propensity to obesity, and that given the cases where fecal transplants from obese donors to non-obese recipients results in novel obesity in the recipient (observed in humans, reproduced experimentally in mice), it would seem that an obvious culprit is the GI microbiome.

This, uh, blew a few minds and upset some people.

Anyways:

2022 Dec 25: EurekAlert.org (AAAS) PR University of Copenhagen Faculty of Science: "Some guts are better than others at harvesting energy" (unattributed):

New research from the University of Copenhagen suggests that a portion of the Danish population has a composition of gut microbes that, on average, extracts more energy from food than do the microbes in the guts of their fellow Danes. The research is a step towards understanding why some people gain more weight than others, even when they eat the same.
[...]

The results show that roughly 40 percent of the participants belong to a group that, on average, extracts more energy from food compared to the other 60 percent. The researchers also observed that those who extracted the most energy from food also weighed 10 percent more on average, amounting to an extra nine kilograms.

Like I had said:

The new study in humans confirms earlier studies in mice. In these studies, it was found that germ-free mice that received gut microbes from obese donors gained more weight compared to mice that received gut microbes from lean donors, despite being fed the same diet.

Even then, the researchers proposed that the differences in weight gain could be attributable to the fact that the gut bacteria from obese people were more efficient at extracting energy from food.

More information about this study and its other interesting findings at that link.