siderea | Entries tagged with health

1) My PCP feels that I do not have thyroid cancer. Hooray. He also feels, given that my thyroid function is falling off the cliff, that I should be taking a thyroid hormone, levothyroxine, to replace what it was supposed to be doing for me. Today I started on it.

Iiiiiiii don't think I can be compliant with this. It has to be taken on an empty stomach, with no food in the four hours before and no food or drinks except water in the hour after. Consequently, most people take it on waking and then have to wait before eating or, more crucially, drinking coffee. And you're supposed to take it with a big glass of water. And, no, you can't take it with other medications. In general. And something like half my specific medications (and supplements) have interactions with it.

My doctor said I only have to wait a half hour after taking it to have coffee with milk and sugar, but could take it with black coffee, which is absolutely not what reputable sources on the internet say. See this discussion of "Altered Intestinal Absorption of L-Thyroxine Caused by Coffee" [2008, Thyroid, S Benvenga, L Bartolone, et al] which found (N=8) black coffee reduces the effective dose up to ~50%, and is the basis of the standard recommendation to wait at least an hour after taking the levothyroxine.

But even if I only wait a half hour, I really don't have a spare half hour in my schedule to add to my wake up routine so I can continue to have my coffee and morning meds at an adequate time to get to work on time. And I forgot that drinking water on an empty stomach gives me a stomach ache. And sitting around for a half and hour after I wake up, woozy with a stomach ache waiting to be able to take my wake-up pills (or any NSAIDs for pain) and have my delicious, comforting cup of coffee (which Mr. Bostoniensis has been bringing me in bed) is even more miserable than it seemed in prospect.

The internet tells me there's an alternative, Tirosint, which can be taken with coffee and food, though not with all meds. It's allegedly more expensive, but apparently not that much more expensive, and I would argue I have medical justification.

Weirdly, there's a lot of advice not to take it within 4 hours of taking iron supplements, but none of that advice mentioned multivitamins, which is where I get my supplemental iron, nor using cast-iron cookware, which is how lots of people get their supplemental iron.

2) I checked my email before I was going to settle in to write, and discovered I was the victim of credit card fraud and maybe identity theft. Somebody ordered a ~$12,000 balance transfer from my personal credit card, so I got to spend the afternoon on the phone with my credit card company cleaning that up.

I've heard people say bad things about Elan, but I've only had really good experiences with them. Especially when dealing with problems. There's been times their customer service has dipped down to merely perfectly adequate, but mostly it's been legit fantastic.

They were able to tell me the fraud was perpetrated by someone calling in and representing to be me. So the perp doesn't have my online password. I said, "So they had my SSN?" (because authenticating on the phone typically requires the last four of the SSN) and she said no, not necessarily, there's other ways to authenticate. Which: hmmm.

She's canceled my card and is sending a fresh one. I'll get to spend however long updating all the places I store it online. I also await a call from the fraud department.

This is the card I had as the payment form of record with my life insurance when it was compromised, so that might be where it got got.

3) The biopsy I am getting in November comes in two options. It can be done as an office procedure without anaesthesia, or you can have it done in the hospital under anaesthesia, where while they have you under, the gynecologist can do a more thorough assessment and maybe remove obviously cancerous bits if they present on inspection.

My gynecologist was upfront about this: the office version is much cheaper. I asked her, given I had awesome insurance, what, if price is no object, she would recommend on clinical grounds, and she promptly said the hospital version, observing she would be able to do a more thorough job and also having anaethesia would be much nicer for me. I said I would lean towards the anaesthesia version, but would need to know how much more expensive it was.

Well, I got the estimate today. The nice estimate office – whose vmail has been full for a while and whom I ratted out to the billing deparment – finally got back to me. My share, according to what they could tell of my insurance, is estimated to be about $1,300. I can do that. It is 2x what she said the office procedure is, but it's way less than the $3,500 presently between me and my out-of-pocket-max which I was emotionally bracing to pay. And it seems worth it to me to do it under anaesthesia, if only because of my back.

Also, the total amount estimated to be billed to my insurance is the eye-watering $17,000.

Maybe more if the procedure runs long. If I understand correctly, the anaesthesiologist is paid by the 15 minutes.

The worst-case estimates I found online said $12,000. I'm kinda glad I asked, just from a morbid curiosity standpoint.

Like I said, the estimate is that I only wind up paying about 10% ($1,300) or so of that. Since my co-insurance is 20% and I'm not going to meet my OOPM, I assume that means that on average the allowed was half what they intend to bill.

[Reminder: don't be talking about your health online except under a pseudonym.]

I've been going through a lot with my health recently. Sort of. It's a bit weird and hard to talk about because it's not exactly that I've been in ill health. At least probably not. The waveform has yet to collapse.

I suppose it is fair to say part of what is going on – a substantial part – is about the interaction of being a disabled person and getting medical care: the way I am disabled makes it hard and extra time consuming to go places to meet people, like say going to medical facilities to meet wih medical professionals.

It can also cause exacerbations of my disability. This means a not-huge amount of medical appointments actually works out to be a huge amount of medical appointments for me because it often has a huge impact – sometimes including medically – on me. For instance, it recently took me a week to recover from the consequences of a recent medical exam, where by "exam" I mean "sitting in a chair waiting for the exam to start", and by "consequences" I mean "increased pain the following day, which then fucked up my sleep, which slowed my recovery from the aggravation of my pain, which protracted the disruption of my sleep from pain, lather, rinse, repeat; and also left me exhausted from all the sleep I was missing."

This interacts poorly with the apparent fact that it does not seem possible for me to have any contact with the medical establishment without a medical professional finding a lump or other potential sign of cancer. It has never turned out to be cancer. It just seems that I am... lumpier... than normal. But it means that when I present for medical problem X, not only do I wind up having all the subsequent medical appointments for X, I will also wind up having all the subsequent medical appointments for problem Y, which is Oh Look A Lump Maybe This Is Cancer.

When I got the CT scan of my aorta, they happened to get a look at my thyroid, and, because this was at the same hospital I presented to for the neck infection of 2022, they had a comparator. The radiologist reported that since 2022 the small lump they found on my thyroid then is less small now. So I've been dealing with the follow-up of that (doctor, labs, ultrasound, labs, more doctor).

This raises the obvious question of whether I have noticed any symptoms of thyroid malfunction, for which the answer is: sure, a little – but for decades. Doctors have been running thyroid panels on me forever, and they all come back fine. None of those symptoms have become much worse in the last three years, and one of them has gotten a bit better. The labs are finally showing something a tad off, but not actually that unusual for someone my age.

Then in July, I got a symptom that has nothing to do with my thyroid. It's one of those minor symptoms that they tell people with uteruses who have been through menopause means It's probably nothing. But... call your doctor. Unfortunately, my uterus was already being eyed with suspicion of trying to go rogue with cancer because lumps had already been found there (when my hip was imaged in 2022). I waited hopefully for a week or so for the symptom to go away on its own, and it didn't, so I called my new gynecologist (who is awesome). They weren't able to get me in to see her until mid-September which is just as well because of all the thyroid-related care I needed to show up for. Over the last few weeks the gynecologist (and the lab) ruled out a bunch of less serious problems. I have a ultrasound and a biopsy scheduled for November. This was convenient in that it gave both Mr Bostoniensis and I time to get all our seasonal vaccinations done, which will be useful given how much time it seems I'm going to be spending in medical facilities.

Also, there was a biannual teeth cleaning and a mammogram somewhere in all this.

So that's where things are. I've been dealing with an large amount of medical care which isn't to treat any of the things that have actually been problems for me, but to assess whether I have a problem I don't yet know about. It may all of it be nothing. It is to be hoped that it is nothing. But it has been so far and looks like it is going to continue to be a tiring, stressful, logistically-challenging, and physically painful nothing that hits the out-of-pocket-max on my health insurance.

It's awkward to try to talk about. I have multiple doctors concerned I might have cancer so I am going through tediously much medical care which is all about cancer. But I almost certainly don't have cancer. Just not absolutely certainly. The odds are very low that I do. I probably don't. "Ugh my schedule is all fucked up because of all the medical appointments for cancer my doctors think there is a very small chance I have."

The problem is that the odds just went from one in a hundred to one in twenty. And as we all know, that's a 1 on a 1d20. So this is basically a reasonably easy, but not sure-fire, saving throw.

So: I'm dealing with all doctors all the time, only not really, it's just that it takes very little doctor-visiting to cast a long shadow on my schedule including by causing medical complications of my pre-existing disabling conditions; and none of that medical care is to treat any of those pre-existing disabling conditions; it's not, in fact, to treat any condition at all at this point, since it's all diagnostic (e.g. imaging) or prophylactic (e.g. vaccines); it's to identify whether or not I have a medical condition that, while very bad to have, I am very unlikely to have.

(And no, nobody has done anything futher to investigate the cause of my chest pain back in June. Everybody is too preoccupied by the Oh Look A Lump Maybe It's Cancer question.)

This week, I have a telehealth appointment with my PCP to follow up on whether he thinks I need to do something about the thyroid lump and I have a scheduled flu shot at a pharmacy. In the next month (Nov), I have an ultrasound and a biopsy, the latter of which will be done in an operating room with an anaesthesiologist.

It feels slightly absurd and dramatic, but cancer is bad, so I guess this all makes sense.

The CT scan found my body has "small accessory spleens", which, speaking as a medievalist: oh of course my body turns out to have little ADUs for melancholia. My SCA persona is nodding along – least surprising medical finding ever.

(Apparently this is not all that uncommon, and mostly clinically irrelevant. I'm entirely bemused.)

So, unfortunately, it dawned on me only about ten hours after getting home from the ED (i.e. after I had slept) that the condition my symptoms most match is a thoracic aortic aneurysm, and in the ED I had been asked none of the relevant diagnostic or risk questions for TAA, nor did I, having not had that realization yet, ask them if the tests they had done were indicative of the state of my upper aorta.

Aortic aneurysm is unusual in women under 60, and usually associated with pregnancy. Thoracic aortic aneurysm is the rarer location for an aortic aneurysm, in general.

But the one risk factor other than pregnancy that makes aortic aneurysm much more plausible is a connective tissue disorder.

And here's where the situation gets gnarly: I suspect I have a connective tissue disorder.

I have a lot of reason to think so – I have the kind of injury history that precipitates physicians screening me for EDS. But I don't have EDS. The symptoms I have don't match EDS. I don't stretch, I tear.

But I have multiple medical conditions which are suggestive that there's something wrong with how my body holds itself together. At least one of the conditions I have has been hypothesized to be caused, in some cases like mine, by an as-of-yet undescribed, undiscovered connective tissue disorder.

The thing that triggered the realization that this might be an aortic aneurysm was reviewing the clinical note from the ED visit. They had done a chest X-ray, and there was an incidental finding: I have a very slightly sunken chest, i.e. mild pectus excavatum.

(I kinda always knew there was something slightly non-standard with the shape of my rib cage, from sewing clothes for myself.)

Or more accurately, what triggered the thought was when I looked up what pectus excavatum and its clinical implications were and found out it was a congential condition suggestive of disordered connective tissue, and any of a whole list of known connective tissue disorders.

I of course thought, "Oh, it's not that I'm having a very unlikely (given my age, blood pressure, and blood cholesterol level) cardiac incident, it's that I am very likely having the umpteen-thousandth incident of some connective tissue in my body tearing apart, again. Hmm, let me think, what parts of my body are in the place it hurts which might have given way. ...Oh hell."

So I looked up aortic aneurysm symptoms, and realized somebody at the ED should have asked me if I had had any recent problems with swallowing or history of aneurysms, or, you know, any connective tissue disorders. Because if they had, the answer to all three would have been, "Oh, hey, now that you mention it..."

But none of those things are in my medical record. I have been way too busy with other medical concerns to bring up the swallowing thing – over the last six months or so, I have sometimes had trouble with food getting uncomfortably stuck in my esophagus, apparently hung up on an obstruction. I presented my weird spontaneous bruising to my doctors, but they were unconcerned and mostly dismissive. And I have been trying for over twenty years to get a medical professional to take more than passing clinical interest in the possibility I have a connective tissue disorder, instead of treating every single injury and complication as a separate unrelated condition, and it hasn't happened yet, so there is no connective tissue disorder in my chart.

In the ED, I was asked about my family history of heart disease, but nobody asked me about my family history of connective tissue disorder. My sister has been diagnosed with one. And I have an uncle who needed a heart valve replacement due to a bicuspid aortic valve; there is an association still being explored between bicuspid aortic valves and connective tissue disorder (it is common in Marfan syndrome), so these researchers propose that people found with bicuspid aortas should be screened for connective tissue disorder, and offer a screening scale for doing so. (Disappointingly they based it on Marfan symptoms, which I expect will cause problems down the road.)

The thing is, thoracic aortic aneurysm can be a stable and not particularly concerning. Also it can turn into an thoracic aortic dissection, which is when the largest artery in the body tears. Which is absolutely as catastrophic as it sounds like.

So I emailed my PCPs office to suggest I be seen more quickly (there is a whole story here, and I'm not thrilled how it played out, but maybe later) and they got me in on Wednesday at 4pm by telehealth.

My PCP thinks it's probably just something gastrointestinal (or maybe costochondritis, but my symptoms really don't match). But I point-blank said I was concerned with the possibility it was an aortic aneurysm and asked what was necessary to rule it out. He said a CT with contrast.

So I'm pulling an all-nighter to get to my 9:00 a.m. Sunday morning CT appointment on time.

After about three or four days from the ED visit, the pain started remitting; at this point it's about 95% gone, though something still feels... off.

I hope he's right and this returns nothing of significance, but because there's no official diagnosis of a connective tissue disorder in my chart, I can't just rely on his, or any physician's, professional experience. He tried to push back a bit about the CT, but saw I was adamant and wrote the order. It's one of the reasons I keep him – he's not great, clinically, but he'll write the order.

I am... not pleased with feeling like I have to be my own doctor because actual physicians are caught in a self-sabotaging web epistemological idiocy, where because there's not a specific named syndrome to designate my symptoms, they don't document it, and because they don't document it, it stops being a risk factor when evaluating other, potentially life-threatening, presentations.

Update, 9:50 a.m.: no pathology of the upper aorta! Yay! Going to sleep now.

Early Monday morning I went to the emergency department with mild but inexplicable and persistent chest pain and shortness of breath to find out if I was having a heart attack.

Apparently not. I made a point of not going to the closest hospital, but to one I knew from my own patients' experiences takes women's risk of heart attack seriously. I showed up at about 6:30 am and there wasn't a single other person in the waiting room. I had an experience kind of like when a race car has a pit stop, only with a team of people hooking me up to the EKG almost instantly instead of changing tires. They had it completed before Mr. Bostoniensis was done parking the car.

They kept me for a few hours for repeated blood draws and did a chest x-ray. The conclusion the EM doc came to was that he felt it's very unlikely that it was a heart attack, but can't rule out something more chronic and cardiac. X-ray showed my heart is the size it's supposed to be; my lungs seem perfectly fine and there's no evidence of pulmonary anything.

Nevertheless, something is very Not Right in my chest, and I have a follow up appointment with my PCP tomorrow. The discomfort is not severe, but it is persistent and NSAIDs do nothing to it, and that and the attendent anxiety is screwing up my sleep. I keep wanting to press my hand against the sore spot to put pressure on it, but it's right behind my sternum so I can't reach it.

There's a non-zero chance that in 20 hours I'll be in the market for any or all of: cardiologists, vascular surgeons, pulmonologists. If you happen to be a woman or otherwise AFAB in the Boston area who has one or more of those that she likes, feel free to recommend. I have a preference for the BILH system as opposed to MGB, but whatever. Alas, I can only take recommendations from women or people likely to be treated as one, because, fucking hell, it matters.

Irritatingly, my health had been seeing a slight improvement. I'm moving a bit better and tolerating sitting better.

Meanwhile, my personal life has been a huge rollercoaster over the last four months. Mostly good stuff, but... emotionally intense. I had hoped to post about it, but it has proved very difficult to write about. It starts with flabbergastry and then moves through some delicate territory where I've been asked to keep some details private by family and also is a very fast moving target and also involves talking about some intrinsically very difficult to talk about things.

This in turn is in a larger context where I feel less and less comfortable self-disclosing personal details here. As you might or might not have noticed, when I moved two years ago, I took advantage of the occasion to stop talking about where I lived. That's now available only on a need-to-know basis. I'm still in the Greater Boston area. But I think I would rather not be more specific than that.

That's one example. There are others, but I don't feel the need to itemize them.

Unfortunately, this kind of opsec comes with a perhaps surprising downside for me: it absolutely cripples my ability to write. I was, like everybody, struggling with the emotional weight of current events and the downward force it put on concentration and motivation, and there was the ergonomics problem I had last Nov/Dec that stole a lot of my mojo. But on top of those and some other difficulties: my capacity for doing the kind of writing I do here is profoundly tied to a specific kind of social dynamic this kind of reserve frustrates if not completely prevents.

Writing has always felt like lifting heavy things with my mind; doing it without that social context makes everything I try to life about two orders of magnitude more heavy. It's not strictly speaking impossible. But it makes it vastly more difficult and unsustainably stressful – you can smell the motor in the winch start smoking – and is what has been burning me out. Writing this way does not feel like any sort of accomplishment, just something to be grimly endured.

P.S. I feel the need for completeness sake to relate that what I was doing at the moment I noticed, hey, my chest feels funny, was trying to debug an old SPF record. If this takes me out, blame Sender Policy Framework.

So, I, uh, got my RSI/ergonomics debugged!* I then promptly lost two days to bad sleep due to another new mechanical failure of the balky meat mecha and also a medical appointment in re two previous malfunctions. But I seem back in business now. The new keyboard is great.

Patrons, I've got three Siderea Posts out so far this month and it's only the 12th. I have two more Posts I am hoping to get out in the next three days. Also about health insurance. We'll see if it actually happens, but it's not impossible. I have written a lot of words. (I really like my new keyboard.)

Anyways, if you weren't planning on sponsoring five posts (or – who knows? – even more) this month, adjust your pledge limits accordingly.

* It was my bra strap. It was doing something funky to how my shoulder blade moved or something. It is both surprising to me that so little pressure made so much ergonomic difference, and not surprising because previously an even lighter pressure on my kneecap from wearing long underwear made my knee malfunction spectacularly. Apparently this is how my body mechanics just are.

Very shortly after I posted my recent request for pointers on 3D printing education – a request which was occasioned by my getting excited over my new and improved typing capability courtesy of my new NocFree ergonomic keyboard and wanting to make it a peripheral – my shoulder/back went *spung* in the location and way I had had a repetitive strain injury a decade+ previously.

*le sigh*

I'm back to writing ("writing") slowly and miserably by dictation, because all of my other forms of data entry aggravate this RSI. (This explains how rambly and poorly organized the previous post was and this one too will be.)

I'm going to try to debug my ergonomics, but it remains to be seen whether I can resume typing.

Thanksgiving came at an opportune time, because it took me away from computers for a day. But I had wanted to get another post out before the end of the month. We'll see what happens.

So, uh, I had been going to post about how I have worked back up to something like 80%, maybe 90%, of my keyboard fluency on the NocFree. Eit.

Canonical link: https://siderea.dreamwidth.org/1886696.html

Hey, Americans and other people stuck in the American healthcare system. It's open enrollment on the state exchanges, and possibly through your employer, so I wanted to give you a little heads up about preventive care and shopping for a health insurance plan.

I've noticed from time to time various health insurance companies advertising themselves to consumers by boasting that their health plans focus on covering preventive care. Maybe they lay a spiel on you about how they believe in keeping you healthy rather than trying to fix problems after they happen. Maybe they point out in big letters "PREVENTIVE CARE 100% FREE" or "NO CO-PAYS FOR PREVENTIVE CARE".

When you come across a health insurance product advertised this way, promoted for its coverage of preventive health, I propose you should think of that as a bad thing.

Why? Do I think preventive medicine is a bad thing? Yes, actually, but that's a topic for another post. For purposes of this post, no, preventive medicine is great.

It's just that it's illegal for them not to cover preventive care 100% with no copays or other cost-sharing.

Yeah, thanks to the Obamacare law, the ACA, it's literally illegal for a health plan to be sold on the exchanges if it doesn't cover preventive care 100% with no cost-sharing, and while there are rare exceptions, it's also basically illegal for an employer to offer a health plan that doesn't cover preventive care.

They can't not, and neither can any of their competitors.

( So any health plan that's bragging on covering preventive care?.... Read more [2,270 words] )

This post brought to you by the 220 readers who funded my writing it – thank you all so much! You can see who they are at my Patreon page. If you're not one of them, and would be willing to chip in so I can write more things like this, please do so there.

Please leave comments on the Comment Catcher comment, instead of the main body of the post – unless you are commenting to get a copy of the post sent to you in email through the notification system, then go ahead and comment on it directly. Thanks!

I have been dealing with some health stuff. I recently got a somewhat heavy medical diagnosis. It's nothing life-threatening, and of yet I have only had the mildest of symptoms, and seem to be responding well to treatment, but it's a bummer. My new specialist seems to be fantastic, so that's good.

Meanwhile, I have also finally started having a medical problem I've been anticipating ever since my back went wonky three years ago: my wrists have finally started crapping out. Because I cannot tolerate sitting for long, I have been using my laptop on a rig that holds it over me on my bed. But this means I haven't been using my ergonomic keyboard because it's not compatible with this rig. I'm honestly surprised it's taken this long for my wrists to burst into flames again, but HTML and other coding has always been harder on my arms than simple text, and the research and writing I've been doing on Latin American geopolitics has been a lot of that. And while I can use dictation for text*, it's useless for HTML or anything that involves a lot of cut-and-paste. Consequently, I've gotten really behind on all my writing, both here and my clinical notes.

So I ordered a NocFree split wireless keyboard in hopes that it will be gentler on my arms. It arrived last night, and I have been relearning how to touch type, only with my arms at my side and absolutely not being able to see the keyboard.

You would not believe how long it took me to type this, but it's all slowly coming back. Also, I feel the need to share: I'm doing this in emacs. Which feels like a bit of a high wire act, because errors involving meta keys could, I dunno, reformat my hard drive or crash the electrical grid.

Here's hoping I get the hang of this before I break the backspace key from overuse or accidentally launch a preemptive nuclear strike on Russia.

* If, you know, I don't too dearly value my sanity.

I have a question about eye safety, maybe someone here can advise me on.

Apropos of the protests going on, I've seen a lot of helpful pointers about preparing for getting tear gassed or pepper sprayed, such as not to wear contacts and to have tight-fitting chemists' goggles. But not wearing vision correction is not an option for those who need it, and the alternative to contacts is glasses, which are apparently incompatible with most eye protection from gas or particulates.

I am aware of the existence of some models of full-face gas mask that have internal mounting hardware for glasses, but in addition to being expensive themselves, they require getting lenses made and fitted to the gas mask (i.e. not compatible with regular glasses). I'm surmising the existence of these means that other, cheaper, spectacle-compatible eye protection doesn't really exist, but I thought I'd ask.

My personal interest in the topic is less about protecting myself from chemical ordnance at protests – I only wish I could attend protests (though if things got spicy in the right location I suppose I could collect my fair share of tear gas at home) – than from wildfire smoke. The conjunction of the No Kings protests and the local air quality alerts from fires in Canada reminded me I should really be doing some preparation in this space.

I'm allergic to smoke. (It turns out it wasn't con crud I kept getting at Pennsic.) My reactivity to smoke only seems to be gradually getting worse over time. So when I've heard reports or seen pictures from the left coast of the sorts of wildfire smog they have there, I'm like "...not enough steroids in the world." I mostly manage this threat by not crossing the Mississippi, but it could happen here. Or upwind of here. It has. If not quite so "blot out the sun" bad, certainly bad enough for me to feel it.

So I've been looking at half-face elastomeric respirators, but that leave eyes unprotected.

Any suggestions?

Edit: I'm getting a lot of suggestions that aren't really helpful because:

1) Most safety goggles are for protection against impact or splashes, and as such literally have vent holes that make them useless against gases and airborne particulates.

2) Involve buying a prescription eyepiece. The whole point of my question was looking for alternatives to buying additional prescription lenses. Like I said, I am already aware of options that entail ordering custom lenses, I am looking for alternatives that don't involve that and are compatible with regular glasses the wearer already has.

There may not be any*, which would be good to know, but that is the question.

Allow me to put a finer point on this. If there is no affordable, readily available option for eye protection against gas/powder attacks for people who are dependent on vision correction, then that implies something important about protest safety that is entirely missing from all of the discourse of the sort that recommends having a gas mask to go to a protest.

* Since posting, I learned the term PAPR, and am now wondering why they're so expensive and whether that's a technology ripe for DIY.

Got my steroid epidural today. Because of the insufficient response to the previous one, this one was administered differently and rather hurt more. Turns out the new more round-about route through my back they were taking into my spine was through some squishy bits that were already very sore and tender and not okay before driving the needle through them.

The first appointment they offered me was like six weeks out, and the second appointment slot of the day. Since I didn't want to wait any longer than I had to for it, I took the offered time, and given that it meant I would be participating in A.M. rush hour, which would add up to 40 minutes to get there, just pulled an all-nighter to show up on time. Though, for me, "all-nighter" just means "staying up a few hours longer than usual".

The good news was that we ran into no traffic and arrived 50 minutes early and the patient with the first appointment no-showed, so they took me early. This wasn't an unalloyed joy as it meant everyone was still booting for the day and everything went a bit slower – I discovered that somebody is making radiological lead PPE suits that are purple on the outside with a matching vivid purple-orange paisley patterned lining – but I did get out of there a mere 20 minutes after my assigned appointment time, a good ten of which were babying me after the procedure and wrestling with Epic which apparently doesn't do concurrency.

I came home and managed to get about six hours of sleep, but then it was so late in the day, I decided it was unwise to take my wake-up medications.

So I am exhausted and my brain is under-resourced and I'm in more pain than I have been previously after these. My brain is now throwing little pop-up alerts that it is on 5% battery and I should plug it in urgently.

I expect to be considerably better tomorrow, assuming nothing untoward happens between me and getting a good night's sleep.

ETA: now on my fourth attempt to post this bc typing hard

Things are being a bit too eventful in the Bostoniensis household.

But first: I'm ambulatory again. Starting about starting about two weeks ago my pain finally started ebbing – a mere five weeks after my epidural – and by about a week ago I was better enough to start doing some things for myself again and also wash my hair.

I'm not actually certain how much of this benefit is from the epidural; I'm also using compression garments again, and they worked previously to my getting any epidural.

[ETA: My epidural was on the 5th of August; the follow-up appointment was supposed to be about 3 or 4 weeks later, but the earliest they could book it was September 18th. At the end of August, having not seen much of any improvement I emailed to ask whether I should be scheduled for a second epidural or wait to discuss the issue at my follow-up appointment; the staff replied since my follow-up was only in 2 weeks, I should wait for it and discuss it with the doctor.

A week later, I got a call that they had to cancel my follow-up appointment due to some issue the doctor was having and to call in to reschedule. The earliest they could get me in was October 25th.

Given how much trouble I had scheduling the epidural of Aug 5, while I was there I asked the doctor if I could just be put on the schedule for my next epidural sometime around November when it should be wearing off. He informed me that that was not possible because insurance no longer allows it: to establish medical necessity to justify the expense, we have to wait for the epidural to wear off. I pointed out that they could put me on the schedule and if I didn't need it I could cancel the appointment, but he was unwilling to play ball. So it looks like, thanks to insurance company policy, my life is going to consist of 2/3 being kinda able to walk and 1/3 not really being able to walk and either waiting to get the shot that will allow me to walk or waiting for the shot that will allow me to walk to finally kick in.]

[ETA2: oh, in other health related news, I had been prescribed HRT for menopause early in July. But I didn't want to do anything that might further disrupt my sleep, which was already made difficult by the amount of pain I was in. So I decided to wait on starting it until my pain levels were better under control. I finally started it on September 16. My PCP reasonably wanted me to get a (extremely overdue) mammogram to baseline me in case the hormones start giving me cancer. The earliest the facility at the hospital could book me was next March. They used to have a clinic that did them in the same town that I now live in, but it closed at the end of 2023. Given they were booking into March, I made an appointment for May, figuring I would probably need a follow-up appointment around then and whatever COVID vaccination I get in March or April would have had a chance to kick in by then. I called the practice I used to get my mammograms through and they were able to offer me an appointment in November, and I was glad of it.

I was embarrassingly pleased that the online mammogram appointment request platform actually asked whether one has a mobility impairment. And when I was on the phone to schedule, the scheduler noticed that and discussed it with me, and booked me for a double length appointment to accommodate the difficulty this would add.

So far, it's been one week and I don't know that I've noticed any effects. On the other hand I slept a lot better last night and I was not woken by any hot flashes. Here's hoping. I was told to give it a month or two before expecting anything.]

I've been able to do some further unpacking, which is good, because, for one thing, I have been getting very stressed out about the fact that I don't have my stuff with me and haven't actually entirely moved in, and also, secondly, because the storage unit I am renting increased its price something like 80%. I called them up and got them to reduce the increase to something like 60% of what it was previously paying. I am obviously not thrilled by this. I'd hoped to have moved all of my books home by now.

We were talking about having Mr Bostoniensis drive to my storage unit and put a bunch of boxes of books in his car and drive them here for me to shelve.

But that's not going to be happening in the short term, because yesterday his car abruptly made a horrible noise and died in traffic. There are a lot of things that could have made this worse: he wasn't far from home, he has AAA, he has a new favorite repair place walking distance from our new home, and I wasn't with him. Still this sucks. He has some important medical appointments coming up. We expect to be learning a lot about Uber in the near future. He has attempted to sign up for Zipcar, but for some reason they have decided that his Massachusetts driver's license was issued by Arizona, and that is why they can't validate it.

Speaking of insane validation problems with online services: Experian.

Re the previous, we both endeavored to put freezes on our credit reports. Mostly it went swimmingly, except for me and Experian. Experian wouldn't let me create an account until it could validate that I was me. Unfortunately, it couldn't do that for some reason. I think part of the problem was that the UI kept asking what my address was to verify my identity, and I couldn't figure out what address they had on record for me, and this was complicated by the fact I just moved, but that another part of the problem is clearly that Experian just sucks.

My attempts to create an account on the Experian website kept resulting in the error message that "We're sorry we can't validate your identity, please call customer service at this special number to do so." So I called in, to be greeted by a phone menu, that you can't get past until you can validate your identity by the same method as on the website. That didn't work either, and they won't let you talk to a customer service agent until you have done so.

I called every phone number I could find on the Experian website to try and reach a human being. I used all the tricks I knew to try to get through the phone tree to an agent, and that didn't work.

I called the Consumer Financial Protection Bureau, and they were almost perfectly unhelpful.

I was figuring my next to last last option was to actually file a complaint with the CFPB against Experian to see if that could provoke them sharing a phone number with me that I could call to reach a human.

But then for some reason last night on Mastodon Brian Krebs went on a tear about how much Experian"s security sucks.

Look, if you have a sign in the waiting room that says "ring bell for service" and I ring the bell for service and nobody ever shows up, I don't necessarily feel the need to only go through the front door, if you know what I mean. I may wander through the doors marked "Employees only beyond this point", calling out, "Yoo-hoo! Anybody here?"

So. One of Brian's linked articles mentioned how completely inadequate the identity vetting was on Experian's "Show me my credit report" account creation page. Now, I was having a different user experience than he described having in late 2023; notably, he was describing getting dumped there by annualcreditreport.com upon requesting a credit report, instead of the way I came in which was looking for a credit freeze. Since I suspected the reason I was having trouble authenticating was I didn't know what address they had me at, I figured that if I could see my Experian credit report, it could make it a lot easier for me to authenticate for an Experian account. So I figured I would try the security hack he uncovered by requesting one's credit report.

I didn't get as far as attempting the hack: I had no problem authenticating via that route. I'm not sure what occasioned the difference of this time. Maybe they fixed the website between when I tried this last week and now? Maybe when you come in looking for a credit freeze you get a different UI/UX than when you come in looking for your credit report, even though you're signing up for the same thing? Maybe something about my multiple trials timed out?

But, for whatever reason, this time I was not asked for my address at all on signing up, so I didn't even have to guess. Like Brian Krebs described last November, they were willing to let me in on the basis of my phone number and a social security number.

Which, um.

Well.

I'm in anyways. And I've got the credit freeze on. For all the good that will do me.

I am amused to discover that my credit score on Experian is way higher than on the other two bureaus. Also they have an employer of record, but it's a temp agency I haven't worked for for two decades. Literally an employer I had before Gmail existed.

Also while the other two bureaus only list my own personal credit cards, Experian knows that I am an authorized user of a card on one of Mr B's credit accounts. So for whomever needs to know this: apparently being the authorized user for somebody else's credit card will impact your credit rating only on Experian, not the other two bureaus.

I am still waiting for my epidural of almost three weeks ago to kick in. Immediately after, I got five good days of reduced pain from the anesthesia which I celebrated by bathing, but then I was back to where I was when I got it, which is where I've been ever since.

I'm trying not to be too nervous about this, because prior experience seems to indicate I am very slow responder to steroid epidurals, but I do get there eventually.

In fairness, sitting up and walking aren't anywhere as bad as they were before my last two epidurals, but that's largely because I don't try to do either. I am doing zero food preparation, so I am mostly just staying in my bed. Mr. Bostoniensis is bringing me my meals that I eat at my desk in my room. My other big adventures each day are making it to the bathroom and back.

Except yesterday. While I was still asleep and Mr B had just stepped out to go on a walk, the fire alarm went off.

Le sigh.

It was a false alarm, but probably good practice. Also it is nice to validate that the fire department gets to the new place in about 3 minutes. Unfortunately, running out of buildings is not good for me. Ow.

We were both suitably freaked out by the experience. Mr B because, for one thing, he left me unattended for five whole minutes and I somehow managed to wind up in apparent mortal peril, and, for another, when he got here – I called him to tell him the fire alarm was going off and that I was evacuating, and he ran back – he couldn't find me for an alarming minute because I'd gone looking for a place outside to prop my sorry carcass. Me because 1) very sleeping and 2) god damn that alarm is loud. No, like, unsafely loud: the klaxons in the back stairs (and presumably the front stairs) were so loud, my ears were ringing for a literal hour after, just from having run past them. I was not in that stairwell more than 10 seconds; maybe less than five. I'm pretty sure that was over a hundred decibels. I think maybe over 120.

The glitching smoke detector was in the basement, and the alarm company came out to check it out, and hopefully it is now all okay, but the dude apparently told Mr B that sometimes old school optical style smoke detectors like that get set off by bugs getting in them. Like spiders. "How do you keep spiders out of a smoke detector?" [That's_the_neat _thing_you_don't.gif]

So yesterday was kind of fired. Not that the whole week was going particularly well, in a pretty challenging month. I enjoyed the parts of the DNC I took in, I may have things to say about it. Unfortunately, trying to write things in bed by dictation or with my lap desk is kind of terrible ergonomics, and pretty frustrating.

I've been trying to write a big post, that I might ultimately serialize, but it has not been going as well as I would like. I might have to stop and work on something else for a while.

In other related discouragements, more bad news from Patreon, about which I intend make a separate post.

I am behind in my correspondence, and will be trying to catch up soon. Apologies if you've written to me and I haven't gotten back to you.

This sounds gloomier than I feel at the moment, but it has been a trying time.

Eeeee, my epidural was just moved up two weeks to this Monday! I'm so thrilled I'd be dancing if I could, you know, stand.

I've been messaging them Wednesday nights such that they'd get the message on arriving Thursday mornings that I'd be happy to move up to any cancelation slot, because they don't keep a list. And it worked! We got the call at 4 p.m. today (Friday).

The bad news first: I seem to have run off the end of my epidural, alas, and am back to being in a lot of pain. My physiatrist's office is being hard to deal with, and Mr B basically laid siege to their phone line to get me an appointment. Turns out, they lost one of their radiologists and now are only able to do epidurals one day a week. The earliest they could get me in is in the third week of August. Eit.

I don't feel I can complain about the timing very much though: between the last shot and now, I had a destination wedding, found a new place to live, and moved, and helped move my spouse, and went away for a week of vacation. Well, mostly moved.

Everything was so precipitous, I mostly focused on moving out; I was not entirely successful at doing everything I needed to do to be able to move in. In particular, I didn't manage to nail down either the rug situation or the flatheaded power strips plugged in behind the bookcases situation. Fixing either of these meant moving a lot of furniture, and moving a lot of furniture meant not unpacking into them. Had I been able to lift things, Mr B and I would have been able to handle it, but I am an absolutely no position to be lifting furniture. So pretty much all the unpacking I have done has been in the kitchen, because Maslow's Hierarchy of Needs, and to a lesser extent the bathroom, but that, too, has been thwarted by the fact that I need to find a solution for not having a medicine chest, and my over the toilet cabinet not fitting.

So I have been living out of boxes since the middle of June. Except for the week I was living out of my luggage.

Today, I hired in movers to do all the furniture moving necessary to fix the rugs, deploy the power strips, and install my new headboard. Then we changed the bed linens, and I had a shower. I am now in a world of hurt but omg my room is starting to come together and as soon as I feel like trying to stand I can start unpacking. Maybe in a few days.

Meanwhile, one of the closets I was going to use has been occupied with something we're getting rid of, and that's been scheduled for Friday, so I get to do that unpacking finally as well, too.

Since I'm not too good at walking right now, we're thinking about putting a mini fridge and a microwave in my room, so I can feed myself when Mr B is asleep.

There's more, but I am super tired.

P.S. Oh, right: if anybody has some words of wisdom (or pointers to same) about how to illuminate a garret bedroom, I could use some inspiration. My bedroom has a very effective ceiling light. Too effective: great for finding things I've dropped on the floor, a little too bright for just about anything else. And because I spend a lot of time lying in my bed looking up, overhead lights are rather uncomfortable on the eyes, even when they aren't blinding. But because of the slope of the ceiling and the low walls, floor lamps aren't very compatible with my space, and even desk lamps don't really have any room to exist on most of my furniture. Ideas? The height of the walls where the ceiling meets it is 48" (1.2m).

So, I got the epidural (my third) in mid-March, and that started kicking in much faster than the previous two. And that allowed me to manage the whole wedding/eclipse thing.

Today was the follow-up appointment. The plan is there is no plan, and if I want another shot, to call in and book it. At this moment, I am not pursuing surgery, but moving in with Mr. Bostoniensis makes that way more possible if I do decide to do that.

Interestingly, I seem to be an extremely slow boot with the steroids. My first didn't kick in until weeks after I was told the evaluation deadline was, and likewise my second did nothing much for me for over three weeks. But then my condition started improving slowly and gradually but continuously for months. I got two more months out of that second shot than we expected.

Likewise this time, I have been continuing to improve even to now, almost two months later. I'm still having to take a lot of breaks to lie down due to back pain, but I am much more mobile – I can walk more or less normally putting full weight on my left leg without associated pain – and generally able to do things in short bursts. Sitting is still an issue.

Hopefully I'll have the whole move done before the epidural wears off, and that nothing I do as part of the move sets me back. My physiatrist is a big fan of my doing as much physical activity as I can stand, to improve my conditioning, which has no doubt taken a bit hit.

Previously, I wrote:

the fact is, I myself, if I get Covid – or any other upper respiratory illness – I absolutely will be using some such interventions. [...] I would feel bad if I didn't mention. I think you should have the choice to do so too, which is why I am explaining all this.

. Welp, here we are.

A week ago, I had an appointment at a hospital to get the aforementioned steroid epidural – literally the only time I left my house in the six days previous or two days following, and the only human contact besides my sweetie, who remains asymptomatic. Two days later, the area in the back of my nose around my adenoids started burning fiercely. This is how approximately 95% of my colds start. By the next morning, it was unambiguous that I had an upper respiratory infection coming on.

I'm not sure what it is. I don't think it's bacterial, because my snot ain't green; I don't think it's allergies because nothing I'm allergic to is blooming yet, and also my eyes aren't burning. I'm thinking it's probably viral. I have consistently tested negative for Covid, but false negatives are a thing, especially with the current wave, and also extra specially for what I've been up to treating this thing, whatever it is.

Because, as I mentioned I would, I'm doing something to try and drive down my viral load.

Knowing that I had an appointment coming up at a hospital and that I was going to have to take my mask off at least briefly while I was there, I had bought a bottle of Covixyl.

Covixyl is an OTC nasal spray, which is marketed as a way to prevent infection by airborne viruses. Its active ingredient is ethyl lauroyl arginate HCl, often rendered "ELA" or "ELAH". ELA has two mechanisms of action against infection by airborne viruses. The basis of their advertising is that apparently it provides a protective coating of your nasal mucous membranes, such that viruses can't bind to the cells. ("Covixyl® creates a physical barrier in the nasopharynx which prevents airborne respiratory viruses from attaching to the cell walls".)

But the reason they can sell it to you to spray up your nose is that ELA is already known and acceptable to the FDA. It's considered "GRAS": Generally Recognized As Safe. It's used as a preservative in food. If you're an American, you've probably already eaten a whole big bunch of it across your lifespan. (Dunno about elsewhere.)

And the way it works as a preservative is by just straight up being a viricide and an antibiotic. It's not just a barrier: it kills viruses by just dismantling them on the petri dish.

Now, clearly, it failed to prevent me catching an upper respiratory infection, if indeed that is what I have, because I did indeed squirt it up my nose before going to the hospital.

But, hey (I figured) if it's a GRAS viricide... it should also work to treat an infection, because of the aforementioned dose-response relationship.

So I applied more Covixyl to the inside of my face. In about a minute, possibly less, the burning irritation in the back of my nose was gone. Covixyl itself is a little bit irritating, but I find that passes in just a couple of moments; I figured I was running the risk it might actually make the burning in the back of my nose worse. It was rather striking how it did the opposite.
About six hours later the irritation in the back of my nose returned, so I hit it with Covixyl again, and again the sensation I associate with viral infection was gone in about a minute.

Now, over the first 24 hours from symptom onset, I was still beginning to develop some other cold symptoms: my nose started getting congested, and a smidge more moist, with a little post nasal drip. But I continued using Covixyl around the clock, roughly every 6 hours (including when I woke up to take more ibuprofen), and each time, my symptoms would lessen for about 5 or 6 hours. My overall sickness never progressed past that point of severity. I never really developed a runny nose, I never started sneezing, I never got so congested I couldn't breathe through my nose, my skin never got chapped, I never developed a cough, and I never developed any symptoms outside of my upper respiratory tract. I'm now about four days in, and all I have at this point is a very slightly congested nose; I've only felt like I am on the cusp of getting sick. This is, like, the least sick I've ever been when sick.

I don't know whether I can attribute this to the Covixyl, and even if so whether any beneficial effect is specific to Covixyl. For instance, it may be possible that any benefit I experienced was simply from the lavage of my nasal passages with a fluid. Maybe it would have been just as effective to use salt water. I did in fact buy a salt water rinse product, but it just arrived today and I haven't had a chance to actually use it.

But my impression is it has had much more of a positive effect then I would get with salt water – certainly I've never had such a dramatic effect from using a neti pot, which I've done when I've had colds – so I suspect the effect is due to the active ingredient. I definitely intend on continuing to use it, both as prophylaxis (in addition to an N95 or KN95) and as treatment of any apparently viral URIs I get.

Before using this product, I strongly recommend actually reading the ingredient list and making sure you're not allergic to any of the other things in it. Somebody didn't do that, and then posted very edifying pictures to the relevant Amazon page of what happens when you have a copper allergy and squirt a nasal spray that has a copper solution in it up your nose.

You can't see this for yourself because for some reason you can no longer buy Covixyl from Amazon, and the page is gone. You can still get it directly from the manufacturer or a bunch of other retailers that deliver. I'm guessing the vendor got fed up with Amazon for some reason.

So where I am with this is: reasonably enthusiastic about this product, but reserving my right to abruptly change my mind with further evidence and information.

P.S. I'm walking much better now, thanks to the epidural.

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.

For well over a year now, I've been managing presumed-perimenopausal sleep time hot flashes by means of an herbal supplement, black cohosh. I take one capsule before bed.

Since it had been a long time since I had any actual hot flashes while I slept, I was wondering if I actually still had, or would have, hot flashes in my sleep if I weren't taking it; I wondered if when they remitted, it had really been from the black cohosh or whether that was just a coincidence of timing.

I've been through many bottles of the stuff by now; I've always used the same brand, Nature's Bounty, because it seems to be reputable. Like one does, I got to the end of one bottle last Sunday, and opened another to populate my weekly pill case.

All last week, my sleep has been fubarred by one hot flash after another waking me up.

Yesterday I acquired another bottle of the same product, same brand from the same vendor, and took a capsule from that bottle.

No hot flashes last night.

Okay, so, apparently,

1) Yes, I am still prone to hot flashes while I sleep,

2) Yes, black cohosh is being effective at making them not happen,

3) No, it's not the placebo effect,

4) Something is wrong with this here specific bottle of black cohosh.

Dang, I would like last week back. I've been dragging my ass all week from exhaustion from being woken up so much.

In not unrelated news,

tn3270 is SUPER excited to learn that black cohosh, Actaea racemosa L., is a fast-growing showy ornamental flower that grows up to 8 feet tall in shade, in a wide spectrum of USDA hardiness zones of which we're in the middle. Speaking as someone with a lot of childhood experience of skunk cabbage, I'm a little concerned that it's also called "bugbane" and described as "fragrant". Anyone know what the flowers of the black cohosh smell like?

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.

Sibylla Bostoniensis

All I have is a voice to undo the folded lie

Today was too eventful [bank, health]

Health update [me, health]

PS [me, health]

Update (aten't dead) [me, health]

Update [me, health]

Update [me, health, Patreon]

Update [me, health]

Choosing Health Insurance: Preventive Care [US, healthcare, Patreon]

Update, Or: J? Where the hell is the j? [me, heath]

Tear gas safety for glasses wearers? [curr ev, health]

Siderea Availability Advisory: Gimme a Day [me, health]

Update [me, health, tech, banking]

Update [me, health, domesticity]

The sqeeky wheel gets the steroid [me, health]

Update [me, health, domesticity]

Health Update [me]

Update, follow-up personal URI tx [me, health]

Update [me, health]

Okay, so not the placebo effect [me]

Boosted [me, Covid]

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October 2026

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