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.

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.

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.

The sucks continues. The pulled muscles in my back are completely healed (yay), but unfortunately that required laying off the compression garments that were managing my hip, which then, after a day or two, regressed considerably (boo). I am back to not being able to sit up, except quite briefly. I no longer find sitting in the car therapeutic but slightly painful, though I can sit in a car seat much longer than any other chair. tn3270 has re-assumed all cooking duties again. I've started wearing the compression garments again, which I'm cautiously optimistic are helping, but I am dealing with a lot of pain, and I'm still doing most of everything from my bed.

Including dictating this to my computer.

Did you know — I certainly didn't — that MacOS has two different speech to text applications? The one everyone knows about, the name of which eludes me at this moment, sends everything you say to Apple for parsing on its servers. An entirely on-board alternative, Voice Control, that does not send anything to Apple and which can be used when there is no Internet connection is buried under Accessibility, through the Accessibility pain [nope, not correcting that error - S.] of the System Preferences.

Honestly, it kind of sucks; it doesn't seem to be adaptive, meaning it doesn't learn to parse your personal speech better over time, and it's unclear to me how much its parsing capabilities are predicated on predictive text or grammar models because it gets homophones wrong a lot. Also, I seem to have very little control over it in frustrating Waze [nope, not correcting that either – S.], such as I have yet to figure out how to control what words it does and does not capitalize. I wind up having to do a lot of correction. And also, I have yet to figure out how to chord keystrokes with this thing, and I'm trying to use it with emacs, which, yes, is hilarious, so I have to manually do all the emacs keystrokes and none of the on board editing commands work. OTOH, it does in fact mostly kind of work, and spares my shoulders the not inconsiderate effort of typing into my computer while it's on my lap desk and I'm in bed.

So apparently this is how I'm gonna try to get writing done.

I realize I have not updated you on what happened with the physiatrist. Or rather, with his practice. I mentioned previously they are a bit of a clown car. Well they've been industriously screwing up getting me another MRI – I am now allegedly scheduled to have one at the end of March – and then they had a pipe burst during that epic cold snap and shut down their office. I am now trying to make an end run around their inability to book me an MRI my insurance will cover by getting one out of my PCP. He was bullish on me having the MRI to begin with so I don't expect it will be difficult, but the appointment is not until next week.

I have discontinued physical therapy for the time being. This is now the second time I have gotten injured doing physical therapy for this injury (now with two different physical therapists) and have the original injury then get much worse. Seems like it's a good idea to stop.

One spot of good news in all of this, between compression garments and over-the-counter meds, I seem to be doing a sufficiently good job of controlling the pain at night that it's not, mostly, interrupting my sleep. There were some rough days in there, but I've been doing better and mostly feel well rested. And energetic. And full of things I want to do. And ideas I want to write about. Aaaaaaaaand I'm still largely stuck in bed. Which is very frustrating. And it's frustrating how slow and effortful getting anything done is, whether it's trying to write something by voice dictation or whether it's trying to do something that involves standing up and moving around, or, worst of all, one of the tasks which I have discovered require sitting at a table, e.g. writing clinical notes longhand, which I am back to being severely behind on. I feel enormous Lee [Really, Voice Control? - S.] behind on everything, and anxious and overwhelmed because of it.

Here, I need to make a confession. Gentle readers, I have been fooling around with another platform. I've been active over on Mastodon, where I have popped off and gone on some tirades, which have gone, uh, slightly viral. I'll see about cutting and pasting them here. If you want to follow me over there, I am @siderea@universeodon.com.

I don't know, long-term, what my relationship to Mastodon and the fediverse going to be. There is a lot that I deeply dislike about Mastodon, but it's much more accessible to me from my phone and also a much richer source of interesting things for me to read than is DW, so it's apparently what I use when I'm in pain, stuck in my bed, and looking for a distraction. The moment my health improves to the point that I have other alternatives, I drop Mastodon like a hot rock. Heck, now that I've got this talking to my computer thing sorted out, here I am talking to you and ghosting Mastodon.

There may be further update to relay, but I think I'm just gonna stop here sort of abruptly, and get on with doing some other slow, difficult task.

Huh.

I think I have figured something out.

Okay, so: the week before Thanksgiving, I suddenly had a bad setback in my hip pain, and I've been trying to recover since.

I've been on high levels of NSAIDs and, concomitantly, high levels of an acid blocker, to keep the NSAID from abruptly chewing its way through my stomach, which is apparently the failure mode of NSAIDs.

Well, I started getting stomach pain when I ate, and I was like, Oh hell no, and started radically reducing the NSAID.

The purpose of the high dose of NSAID – the reason my PCP put me on it – was to reduce inflammation. The presumed inflammation around my spine that all my medical providers are convinced is the problem.

In support of the idea that the problem was inflammation – remember, "NSAID" stands for Non-Steroidal Anti-Inflammatory Drug, precisely because the standard (only other?) anti-inflammatory sort of drug is steroids – was the fact that when I got a juicy iv dose of very steroidal anti-inflammatory drugs, meaning actual steroids, on the first on November to keep my larynx from getting crushed, it resolved all the pain except the pain at the site of what I think the injury is in my hip & butt.

So, I thought: what if I'm right? What if the problem isn't, primarily, or at all, at my spine? What if the problem is that I have an actual goddamned soft-tissue injury that just never heals, and gets swollen, because that's what injuries does, and that's what causes the nerve impingement?

Well, if that's true (I thought) then cold-turkeying the NSAID is going to really suck... if it's actually still doing anything for me. One of the things I know about myself and ibuprofen is that if I take an elevated dose for too long – like 3+ weeks – I rapidly become inured to it. I'm on a different NSAID – naproxen (Aleve) – but I suspect that it's not actually doing all that much for me any more because I've been on it for four months. So maybe I won't miss it.

So what else can one do to manage inflammation? I could pursue getting more steroids, but I have other medical reasons not to want to do that.

I spent some time thinking about pharmaceutical interventions, and then a little lightbulb went on and I was like... oh, right, compression. Like taping up a sprained ankle.

And then I was like... omg, I think I just figured out what the car seat is doing for me.

It's not just the bucket-shape, front to back: it's the side. It's putting even continuous pressure not just on the underside of my butt and thigh and up my back, but wrapping up slightly on the side of the hip and putting pressure there.

So I spent some time pondering how to wrap one hip/butt up like a sprained ankle when I remembered that compression garmets are a thing. And then I remember that early on in the pandemic, to make sure that even if there were stock outs, my Amazon Subscribe and Save order, which contained my necessary OTC medications, wouldn't dip below the five items required to ship, I had padded it out with some cheap other purchases, including a $2.50 pair of off-brand panty hose I figured I could use to kludge masks out of, if it came to that. A $2.50 pair of off-brand control top panty hose.

Holy shit, it worked.

I won't kid you: it's pretty uncomfortable. It squeezes down on the injury, and it's pretty sore. Also, there's no "control top" anything that doesn't also put quite a bit of strain on the lower back, and my lumbar process is pretty cranky about this.

But by god I am typing this sitting in a goddamned chair at my desk, where I have been for some hours. I have been walking around the house without a cane (until I kind of over-did it in the kitchen, as is traditional for Wednesdays). I have been able to sit at my desk now for three days. It's sore and uncomfortable to do, but doesn't make my pain worse.

And I am down to one 220mg dose of naproxen before bed every night.

I dug up some old bike shorts I had which are now compression garments solely by virtue of my having outgrown them; they're not as effective as the hose, but they are definitely helping, and give me a change of clothes. I've got several of them, and I've now ordered more control-top hose and other plausibly useful compression garments off the internet. Unfortunately, it's hard to find compression garments for the hips that aren't either about "slimming" (compressing the abdomen) or supporting groin pulls (has the bits in the wrong locations) – the former is hard on my back and the latter looks just to be useless for my specific problem. Further experimentation is forthcoming. But if I can get this far out on a pair of $2.50 (now $5) panty hose, this is a solvable engineering problem, even if I have to fire up my sewing machine to solve it.

I do have to wear them pretty continuously, which means sleeping in them, which has its own challenges, mostly thermal.

I'm both pleased at my own cleverness here and re-exasperated with my medical professionals. I'm only more convinced I have an injury – possibly one that would require some sort of surgery to repair – that has been completely ignored. Compression garments probably won't fix it, and may make it worse, long term; they are a partial solution to my basic mobility problem, but don't solve the fundamental medical problem.

P.S. Still looking for chair solutions. Car is still much more comfy than desk chair.

I have this here hip (and back, it seems) injury. I am doing pretty good at standing and walking, and I am doing pretty good at lying down. Sitting is terrible.

Except in the passenger seat of my sweetie's Honda Civic.

So far the rule has been, the longer I sit on any surface or in any chair, the more pain I'm in, and the worse my pain and debility is the next day. Not only can I sit with relative comfort in my sweetie's car, it's apparently therapeutic: I wind up in less pain, and with more mobility afterwards, and I am none the worse for wear the next day (assuming I don't also then use my new improved mobility to over-do it).

(This has, as a side note, made doing my jobs extremely hard, both the sitting with psychotherapy patients and operating a computer: I've been doing both from my bed, which has it's own challenges, some of which I'm starting to feel in my neck.)

So I'm trying to figure out how to bring the comfort and therapeutic benefit of the passenger seat of a Honda Civic into my home.

I could use some help here.

( This got long. Cut for length. )

Regarding my various health crises and mysteries:

1) The infection seems gone. I feel fine. My last day of antibiotics is tomorrow (Sunday Nov 13).

2) My left hip and leg (and by implication, back) are back to being largely functional. I'm still using a cane when I leave the house, but mostly to have it with me if I need it; I still sometimes use it in the house in the morning when I get up, because that's when it's most painful and uncooperative.
There were about three really glorious days there, when the steroid I was given to keep the infection in my neck from asphyxiating me also worked its magic on whatever part of me is causing the back-of-left leg problem (presumed spine) and while my hip wasn't perfectly pain free, I was more mobile – by far – than I was in months. I'm now back to below baseline, alas, with very occasional pain in more distal parts of the leg and also parathesias, as well as the low constant pain in my hip and buttock which don't seem to be nerve-based.

I'm resuming some of the household cooking duties from tn3270. Right now my limiting factor is working at the counter, standing. I can only do that for limited spans of time. Longer if the thing I'm working on is close to me, less long if I have to reach forward toward the back of the counter (it's a center-of-mass problem), so the thing this really gets in the way of is laying out big batches of things on the counter, primarily the eggloaves, when the fillings are fiddly. But the simpler fillings should be fine, so I'll be returning to soloing those next week.

This is nice timing, because we're rolling on up on Thanksgiving, and I'm pretty excited about cooking for it. I'm responsible for all of one dish (that's very simple), three fifths of another and half of a third, plus possible bird-wrangling.

I've fallen off the physical therapy bandwagon because of the medical excitement of last week and the scheduling conflict with....

3) Next up: dealing with the incidentaloma found during my MRI of my hip. It's very unlikely to be cancerous, both because uterine fibroids generally aren't, and also because nobody in my family gets cancer, but nobody has felt like ruling that out quite yet. I had the follow-up ultraound last Wednesday, and, actually it's three incidentalomas, two quite small; I will be meeting with my PCP for the follow-up in a few days.

There are people in the world who when they learn they have a horking large fibroid in their uterus are all, "So THAT'S why my periods...." Not me. I haven't got any menstrual mysteries in need of explaining. My periods have basically never given me any trouble; they've all been (at least till last year) reliable, mild, and if not pain free, entirely susceptible to ibuprofen.

I asked at least two physicians and my physical therapist whether this rather sizable tumor might have something to do with my hip pain and was assured it wasn't possible, and when I google "symptoms of uterine fibroids" they all say back pain, and someone on my friends list back on LJ had a large fibroid removed which immediately resolved her back pain, and, you know, my back is where I keep my spine, so if the theory is that my leg pain (or some of it, anyways) is being caused by something wrong with my spine, it seems kind of plausible that there's some sort of nerve impingement either from the tumor directly or because the tumor is leaning on something else that is impinging on a nerve.

I am very unconcerned with the thing on its own merits, but if it's why I wasn't able to walk for two months, it's gotta go.

4) In all this, something far out happened wrt my neurological mystery/ies.

My PCP prescribed me prescription strength naproxen (Aleve), and what makes it prescription strength is that is will try to claw its way directly out of your stomach, so my PCP also prescribed me prescription strength famotidine (Pepcid), a drug I had never previously taken and which I was only taking in this case prophylactically because of the other prescription. I had no GI problems of the sort famotidine treats.

Famotidine is an "H2 blocker": H here stands for histamine, of which there are three varieties (at least, that we know about). Apparently, the way your body expresses stomach acid is by histamine signaling, so famotidine reduces how much stomach acid one has by blocking the action of histamine #2 on the stomach acid-producing glands (by being a H2 receptor antagonist, I think).

Famotidine is generally not thought to cross the blood-brain barrier, much or really at al. It is not a CNS depressant and it carries no warnings about making one sleepy or an impaired driver. Indeed, it has no official regular-population side effects that are at all neurological or psychiatric. The FDA cautions [PDF] are not to use in patients that are allergic to it or to other H2 blockers, and also it has a pharmacokinetic interaction on CYP1A2 with Tizanidine, a muscle relaxant, which I am not taking. Really, the big concern with it is that one of the things that can cause the symptoms the product treats is stomach cancer, so you're not supposed to assume everything is fine just because the product works: "symptomatic response to therapy with PEPCID does not preclude the presence of gastric malignancy". The secondary concern is that the reduction of stomach acid it causes can cause other pills to not be digested as well, thus interfering with the absorption of other oral medications.

There is a special warning for use in the elderly (which I am not) and the renally impaired (which, as last I checked, this summer, I am not), that in a tiny percentage of users, there's been reported neuropsych adverse events: "Central nervous system (CNS) adverse reactions, including confusion, delirium, hallucinations, disorientation, agitation, seizures, and lethargy, have been reported in elderly patients and patients with moderate and severe renal impairment treated with PEPCID".

Yeah, so: famotidine substantially improves my quality of sleep.

I sleep more deeply; I am woken less easily; when I am wakened, I fall back asleep quickly; and my overall sleep efficiency is improved, as evidenced by the fact I'm feeling better rested with less sleep.

I have no idea why this would be the case. It's not like I've been being woken up by stomach pain or indigestion. Indeed, since going on it, my digestion seems to have been worse (but hard to tell with all the other digestion-challenging things I've been throwing down my alimentary canal, such as antibiotics.)

It is possible that it's changing the behavior of some other medication I'm taking, but it's not clear how that would be possible and have this effect. There's nothing I'm taking that would impair my quality of sleep, such that digesting it less would improve my sleep; it could impair the digestion of things that help me sleep, but that seems unlikely to make me sleep better. In particular, the thing that the effect of taking famotidine is most like is the Magnesium Oxide I take, and it could be that somehow it's making the MgO more effective. But the whole irritating (both literally and figuratively) thing about MgO is that the more of it you absorb higher in your GI system, the more psychoactive it is, and the less there is to wind up in your small intestines, which is where it has its notorious laxative effects. If you get serious about supplementing with magnesium, there's a whole little world on the internet of fans discussing different compounds and preparations and their various absorption profiles in an attempt to minimize GI distress. The idea that something that could make your MgO pill digest less, and therefore more of it pass into the small intestine, and that this would make it more effective is... uh, not obviously plausible.

The OTC max dose (20mg) is not sufficient for the effect on my sleep; it takes the prescription dose, 40mg. I no longer have the presciption, so I've just been taking two regular pills.

Long-term use at 40mg is discouraged because 1) it hasn't been studied, and 2) it's presumed you're taking it for stomach pain, and if your stomach pain is so severe and refractory you think you need to be 40mg long-term, clearly you need to be checked for stomach cancer, instead, and 3) nobody knows what high-dose long term use does to your kidneys or liver. I have concern about not being able to digest things because no stomach acid.

But the effect on my sleep has been dramatic and so beneficial, that after a week at 20mg in an effort to titrate off it, I went back up to 40mg.

What the actual fuck I do not know.

Boy, this is going to be an interesting conversation with my PCP. More looking forward to telling my neurologist, but I don't even have an appointment scheduled with her.

5) Somewhere in all this, I need to get in for an eye exam, because I am overdue and they're supposed to be monitoring me for liver cancer – sic – and also washing my glasses no longer is sufficient to make onscreen text less fuzzy; also I am overdue for a teeth cleaning. Also getting back to seeing my physical therapist. Oy.

Okay, so:

I saw the ENT today. He was great.

Before that, I woke up feeling better, but was objectively clearly worse.

Before that, I did super good sleeping.

So:

I wound up not getting to bed until 6am, largely because of my anxiety about breathing while lying down and also everything, but I needn't have worried. I got settled in bed, turned out the light, and passed out in the middle of thinking, "Well, this seems okay".

My sleep efficiency and consolidation, unsurprisingly, couldn't be beat. I had one microwake to roll over, and noted that I was in remarkably little pain from my hip – yay dexamethasone! – and sunk back below the waves again. And otherwise slept like a log. Woke up after only seven hours for unknown reasons, but okay. Still weary from sleep debt, but feeling well rested; breathing okay, clearly less swollen, still some throat impingement, but less.

Get up go into the bathroom, and discover in the mirror that my left cheek is indeed now less swollen, but now looks like it has a sunburn. It is red. Also, to a lesser extent, but even more alarming, so does my right cheek, both sides of my neck, my upper chest at the base of my neck, and my upper back at the base of my neck. Oh, yes, this is an infection, and it has spread.

But I feel much better.

Also, in addition to the infection feeling improved, my hip of course feels fabulously better on all this steroid. I'm moving better than I have in months.

tn3270 collects me and we go to my ENT appointment. The ENT MD was great. Yes, the prescription for the antibiotic was inadequate, so he upped me 300mg/day, and also tacked some days on the end. No, he didn't feel the colitis thing was an issue. He said he wanted me "in close contact", and if it got at all worse to call in, any time day or night, and that he would apprise another (the other?) doctor in the practice about my case so he could pinch hit if necessary. He warned me that if it continued to worsen, I might need to be hospitalized for a few days for IV antibiotics and close monitoring.

I get the impression that four years ago, I would have just been hospitalized when I presented at the ER – or would be when I showed up red at the ENT's office – but, under the circumstances, they're trying to handle on an outpatient basis things that normally wouldn't be. I'm fine with this plan – I hate trying to sleep in hospitals, and also germs.

This impression was strengthened by the fact that the ENT MD didn't do that thing that physicians tend to do with female patients and try to be reassuring. Instead he validated, in a low-key way, how serious this was. He didn't come out and say "this is potentially life-threatening", but he did volunteer that back before antibiotics people used to just up and die of this sort of thing "all the time". And not in the context of "but now we have abx it's nbd."

I liked a bunch of things about the appointment, starting with the fact that it started on time, and, even more impressively, he walked in the room already familiar with my case, and clearly having reviewed the CT scan. I was able to given him my account very concisely because I needed add so little to what he knew.

Thank you, Meddit: because of all my time on r/Medicine arguing with physicians, I was able to have brief, entirely between-the-lines conversation with him the upshot of which was:

Me: The ED had a PA treat me, and I would like some grown-up supervision of the prescribed tx.

MD: Absolutely. I rather extremely disapprove of how they are using PAs down there in the ED, and kind of can't believe they let one treat a condition as serious as yours, but I'm not going to criticize them, given the circumstances.

Me: I entirely agree.

MD: Not surprised the abx prescription is wrong. Here let me fix that for you.

None of which was actually said (except maybe I did say that thing about "grown-up supervision"), but which was all splendidly clear to me in what was said.

tn3270 was particularly enchanted by – and can't entirely get over – the fact the ENT actually examined me (given how the orthopedists behaved). He was kind of giddy I got actual medical care.

When I got the appointment and saw it was only 15 minutes, I was dubious that it would be remotely enough time, but he talked fast, was super efficient – even while being affable and chatty – and saved lots of time by just listening to me when I had info for him.

He did a quicky nasal endoscopy, wanting to check out my larynx and make sure my windway was okay. I assume the squirt-it-up-your-nose novocaine was for the comfort of the MD, because (for me at least) it takes 20 minutes to work and the appointment is only 15 minutes long, so it had no medical benefit: the procedure was effectively without anaesthesia and somewhat painful therefore, and it was while I was walking out to the car the anaethesia hit. But I don't mind, needed to be done.

He answered all my questions, including saying he didn't know as appropriate. What caused this? No idea, and we may never figure it out. Seems to be bacterial, could be viral. (He didn't say, but I know that on the rule-out list was mumps, but I don't have a fever and my parotid glands don't seem involved, and now it seems to pretty clearly be something else.)

After the appointment, we decided to head back to my place by way of the pharmacy in case the rx for additional abx were ready. On the way, sure enough I got a text from the parmacy... unfortunately it was notifying me that my insurance objected because I had just got an rx for that abx, and it was "too soon". I called the pharmacy, and talked to someone to find out what was up, and explained what was happening. She said that the insurance wasn't being wholly unreasonable, they were willing to fill the new rx when I finished the old rx at the new rate, which would be on next Monday. I explained I didn't have transportation Monday, and could they deliver it to me then? And she said they would be happy to mail it to me. I pointed out that then I would have no antibiotic and be waiting to receive more in the mail and this was obviously unacceptable because antibiotic. I offered to fix this problem by paying out of pocket and she quoted me the price, and I said that was fine.

Then I got off the call with the pharmacy, and called my insurance. I explain to the nice insurance agent that they just denied a prescription for an antibiotic for a life-threatening condition. We pull into the pharmacy parking lot, and I explain what is going on to the agent who is... reasonably understanding of the gravity of the situation. I explain the transportation problem, what with being mobility impaired (and thinking loudly enough she could probably hear it, "Are you imagining that I'm going to be selling this on the street?"), and how I needed to be able to collect it today. She takes a lot of information from me and agrees to submit an appeal and get it expedited. She tells me they'll call me back tonight – as soon as possible. I confirm that this means I have time to run another errand, and she agrees.

So we order takout BBQ across town, and set out. We park in the Stop and Shop grocery store parking lot across from the BBQ joint, and while tn3270 is picking up our brisket, I check my messages and learn from lauradi7dw about kimchi being a probiotic food and the availability of kimchi at... Stop and Shops. So we go in and buy kimchi. At this point we are very hungry; tn3270 proposes we go get the antibiotic regardless of who is paying for it, and fight with the insurance later; I concur, and we head back to the pharmacy. It's now been more than an hour, so on the drive over, I call my insurance. While I am waiting on hold for the next available agent... a call comes in from my insurance company. The override had been approved. So we pull into the pharmacy, and get my antibiotic for about a tenth the price as out of pocket.

Then we go home and eat BBQ brisket. Over dinner, tn3270 tells me that the redness of my skin has gone down some.

I throw away all the Chinese food in the fridge. I realize I hadn't previously mentioned, I don't think: We got the Chinese food on Saturday, and I got three things. One I ate from on Saturday, and Sunday, I woke up with stomach and abdominal pain, bad enough to pretty much ruin the day. I didn't get nauseated, but I did get diarrhea. It resolved after about six hours, and I figured I had got a light dose of food poisoning. I didn't touch that dish again, planning on trying a little on Tuesday to see if were the culprit. On Monday night, I ate from the other two dishes right before bed, and then I awoke with the infection three hours later. So I don't know if there was something wrong with that food, but I'm not in any position now to be gingerly sampling anything that could make me sicker, and I'm honestly frightened of it, so, tragically, it all went out in the trash.

So where I'm at: I have a potentially life-threatening infection raging, and might yet have to be hospitalized, but thanks to the massive dose of steroid as an anti-inflammatory, I'm feeling better than I have in months. After dinner and after getting my grocery delivery put away, I volunteered to help tn3270 take my trash out, and then was feeling so spry, I proposed a little walk around the building. I haven't been out on a walk since July.

As a random note, when I got dressed to go to the ENT appointment, I discovered my pants were loose, and I had to advance my belt from the second hole to the last. I can't imagine that I've actually lost weight in the last 24 hours but apparently I've abruptly lost girth. I assume due to the anti-inflammatory, and that makes me go hmmmmm. I wonder what that's about.

I think that's everything. I'm very tired. (A walk! Woo!)