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Sticky: Preparing for the Pandemic: Table of Contents [coronavirus2020, COVID-19]
Mar. 8th, 2020 09:06 pmToday was too eventful [bank, health]
Oct. 23rd, 2026 10:15 pm1) 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.
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.
Health update [me, health]
Oct. 20th, 2026 05:31 am[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.
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.
Quiz: the Lotka–Volterra Equations [poll]
Oct. 10th, 2026 07:39 pmUntil 15 minutes ago, I had never heard the name "Lotka–Volterra equations", even though the model showed up in one of my high school science classes, and then again in an internship I did as an engineering undergrad in a department in a field in which the equations are (Wikipedia tells me) particularly important. Surprisingly for this kind of erasure of credit in science, neither Lotka nor Volterra were women.
So I'm curious how widespread this bit of science terminology is. Thus, a poll:
So I'm curious how widespread this bit of science terminology is. Thus, a poll:
Poll #35160 Pop quiz: the Lotka–Volterra equations
Open to: Registered Users, detailed results viewable to: Just the Poll Creator, participants: 118
No looking the answer up! Have you heard of "the Lotka–Volterra equations" (or "the Lotka–Volterra model") by name?
Yes, and if I ever somehow forget what they are, I can refer to the handy tattoo I got of them on an easily examined part of my body.
0 (0.0%)
Yes, I know the equations off the top of my head.
2 (1.7%)
Yes, I know what they are and are for, even if I don't immediately recall how the specific equations go.
6 (5.1%)
Maaaaaaaybe? I think so but would have to look it up to be sure.
5 (4.2%)
No, never heard of them.
86 (72.9%)
I cheated and looked them up, and I absolutely knew about those, but I had never knew they had a name.
16 (13.6%)
I cheated and looked them up, and I recognize the equations mathematically, but I never knew they had a name or that they had that practical application.
2 (1.7%)
I cheated and looked them up, and I thought I knew what they were, but I was wrong, I was confusing them with something else.
0 (0.0%)
Other, I will explain in the comments
1 (0.8%)
Hey, chemists!
My social media feed is abuzz with the news that there's lots and lots of FDA recalls of lead-adulterated cinnamon, mostly cheap brands. I am eyeing the cheap cinnamon in my house with suspicion.
Is there any reason that using a cheap swab test for lead, the kind which is used to test surfaces for lead paint, wouldn't work to detect lead in cinnamon? The instruction for testing surfaces is to moisten the swab then rub on the surface for thirty seconds; I'm envisioning rubbing the cinnamon sample between a moistened swab and a pre-tested plate.
Also same question but turmeric.
My social media feed is abuzz with the news that there's lots and lots of FDA recalls of lead-adulterated cinnamon, mostly cheap brands. I am eyeing the cheap cinnamon in my house with suspicion.
Is there any reason that using a cheap swab test for lead, the kind which is used to test surfaces for lead paint, wouldn't work to detect lead in cinnamon? The instruction for testing surfaces is to moisten the swab then rub on the surface for thirty seconds; I'm envisioning rubbing the cinnamon sample between a moistened swab and a pre-tested plate.
Also same question but turmeric.
Trouble Tickets [p/a/s, Patreon]
Oct. 1st, 2026 02:55 amCanonical link: https://siderea.dreamwidth.org/1905328.html
0.
I presently have open, or closed without resolution, issues with:
Additionally, within the last four months, the following tickets I have opened have been resolved:
Haven't filed yet:
Also:
Off the top of my head. I'm sure I'm forgetting things.
1.
I itemize this first of all to rant and get it off my chest. This is ridiculous, right? Also to marvel at it all.
( Also, to kind of expose it to the light of day.... Read more [6,600 words] )
This post brought to you by the 227 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!
0.
I presently have open, or closed without resolution, issues with:
- Proton, my secure remote drive and office automation - bug reports from both my personal (Sheets: date formatting and cut-and-paste) and professional (Calendar: glitch on event-calendar assignment change and data loss on glitch) accounts.
- Stripe, my payment processor – [redacted]
- Doxy, my telehealth provider - session closing bug on payment. [ETA: allegedly fixed and ticket closed since I started writing this, but see below.]
- My healthcare system - naked discrimination against the disabled in the online booking platform; trying to get CPT codes for a recommended procedure to evaluate the cost; waiting on a prior authorization request. [ETA: Oh, right: a confidential email address I had shared with them had been compromised, presumably on their end, possibly as part of the Change Healthcare breach.]
- My bank - Disappearing scheduled payments UI bug.
- My health insurance – EOBs show two different mailing addresses for me; cryptic coding for PBM entries.
- My health insurance's PBM – Non-payment for meds, awol formulary.
- My life insurance company - Okay I didn't actually file a report, they know they had a catastrophic "cyber attack" and that's why I can't log in.
- My life insurance agency - Sent nastygram that I was in arrears despite the life insurance company managing to charge my credit card against all odds – apparently they can't log in either.
- CVS, my pharmacy – their inventory checker says they have Nuvaxovid 2026-2027 in stock near me, but their website vaccination booking platform provide no way to book it (Reddit tells me the CVS app allows customers to book Nuvaxovid shots... including at pharmacies that don't actually have it.)
- Mr B's employer's HR department – the health insurance said to take the address problem to the HR department which, lol.
- My state Department of Revenue – failed to send me the documents they said they would [ETA: since I started writing this, I got someone on the phone who insisted they don't send those documents and whomever told me they would was mistaken, so this converts to "DOR doesn't seem to have any documentation for this program they administrate or for its web UI"].
- My grocery delivery service – a product was OoS for three weeks, despite being on sale for the middle week, suggesting a technical glitch with website not actual OoS [ETA: this may be fixed? product back in stock]; when I reported a bug to support at grocery store X from my account associated with email address A, I get a reply from grocery store Y to email address B.
- Amazon – price display weirdness that is probably a bug, and also probably illegal.
Additionally, within the last four months, the following tickets I have opened have been resolved:
- One of my hosting companies – A routine upgrade they applied broke my outgoing email; also not complaining but did you mean to stop charging me the surtax? (Yes.)
- A CEU vendor – Billed me for a subscription I had canceled a year ago, didn't respond to emails or phone messages.
- My business credit card – disputed the charge from the CEU vendor.
- My business mailbox service – not providing a service I tried to sign up for.
- The household credit account - compromised three times in five weeks (once my card, twice Mr B's card) (in fairness, Mr B mostly handled these because he's the primary on the account and when I tried to call in, they wouldn't talk to me without a verbal assent from him)
- My life insurance agency - told me to email them proof of the credit card payment, but the email address they told me to use replied to my emailed screenshot with an automated message they don't provide support through email; the alternative email just bounced. Resolved by my calling in to ask how to submit the proof to them and them replying they had in fact gotten it despite the automated message, but it didn't matter bc they had a new policy that made the payment not count.
- Doxy, ibid – Fixed a design/policy problem; fixed the aforementioned bug for the first time though it didn't stay fixed and I had to open a new ticket.
- My grocery delivery service - "boneless chicken things".
- My meal delivery service – had to change the email address on the account (which is the account username (sigh)) because they were compromised, and now we get fraud emails to the previous address from scammers pretending to be them.
Haven't filed yet:
- A different bank – has an error in my email address, online interface for changing email address doesn't work. Haven't called in yet bc it's typically a 45 min wait.
- My grocery delivery service – hard to prove, but it seems like occasionally things get dropped from my cart.
Also:
- I am working on a collaborative project involving contracts and yet another insurance company and stuff, and I had to spend a bunch of time reading legalese and consulting with a lawyer on the question of "is this insurance company being unreasonable" (lawyer: yes); as of right now, we're waiting to hear back from the insurance company with our latest proposal, and one of the other collaborators is all "f these clowns, shopping for a new insurance company", which: better him than me. [Update: after six weeks of this, underwriting came back with, "oh nvm this is all fine after all", and the other collaborator found out the insurance agency he was thinking of swapping to went to the same underwriters, so doesn't seem like an improvement.]
- While I was writing this, I got a letter from my dental insurance alerting me to the fact they, too, were compromised and offering me free credit monitoring.
- Patreon is still shutting down the by-works model come November and I should figure out what if anything I am doing about that.
- A responsible grownup with a third credit card company actually called me in response to my tart free-text answers to their survey about their BNPL feature at a time I could take the call, so I did, and we wound up having a surprisingly productive discussion about how they could fix the key problem with it.
Off the top of my head. I'm sure I'm forgetting things.
1.
I itemize this first of all to rant and get it off my chest. This is ridiculous, right? Also to marvel at it all.
( Also, to kind of expose it to the light of day.... Read more [6,600 words] )
This post brought to you by the 227 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!
Technical difficulites [me, tech]
Sep. 18th, 2026 05:39 amYall, I am so tired.
I had cleared Tuesday to write, and discovered when I settled in to do so that I had lost the entirety of the post I was working on. It's just gone. I have very little idea what happened. I write post drafts in my email system because it both autosaves and has a robust versioning system I configured precisely to prevent data loss. I guess there is something that's become flakey in my email system, because the draft file apparently got clobbered by another draft file (i.e. of another document), which is something that should not be possible. This system autonumbers new drafts, and for some reason, it seems it reused the number of an extant draft when I started a new file and overwrote the extant file. Either that, or the extant draft was deleted for some reason, and that's why the number was free. In any event, I didn't notice in time, and the backup file is a backup of the new file.
This is not the first time this has happened, but the first time I have it dead to rights it wasn't just that I failed to save the file to disk (and thus reserve the number): as it happened, I had the old file open in an emacs buffer in an SSH session which timed out, so I have one screenful of the text frozen at the moment of the disconnection – and at the bottom, in the emacs mini-buffer, the confirmation from the auto-save system that it was saved. It also confirms that the draft I was working on was 2766. And 2766 is the file containing the draft of an entirely other email.
I was looking forward to getting that post out the door, and this just sandbagged me. For months, I have had one problem after another disrupting my ability or opportunity to write: medical appointments sucking up time; sleep disruptions of various kinds leaving me with too-impaired concentration; random high-urgency interrupts like an adventure with the neighbor's malfunctioning smoke detector. I had finally gotten something that was coming together. It was about six hours work I'd lost – 76 paragraphs according to the emacs minibuffer. I was just utterly demoralized; I'm a bit better now, but given that I don't know if my work is going to disappear, I am still feeling paralized about trying to do any substantive writing.
I used to have a proper remote backup system – in addition to the draft and autosave system – which would have probably been proof against this, but it's been down since the drive died, some years ago. I didn't have the wherewithal to fix it, and then my back problems started, which prohibited doing much with hardware.
Like I said, this is not the first time I suspected I have lost drafts in progress. That is not the only problem with this email system. When I moved hosting companies somewhat precipitously in Jan 2024, I didn't manage to get the whole thing fully up and running, and there are still parts of it not working right (mostly about mail delivery to me, not the reverse, but also I never got around to plugging Spamassassin in).
I kind of feel I am drowning in technical debt. In addition to my defunct backup system and my not-wholly-migrated email system (which may be randomly deleting drafts or failing to count correctly), I have recoursed to doing my business bookkeeping in spreadsheets, because I haven't found a remotely acceptable replacement for the system I was using on my Palm Pilot. Even if I could tolerate the state of most bookkeeping software, a lot of it is now In the Cloud which I'm less than thrilled with. Also, I think if I use a SaaS platform, I will need a HIPAA compatible one, bc medical.
Relatedly, I realized with the recent Proton outage, I need a backup solution for Proton. I don't even know where to start with that. I have two Proton accounts, one professional and one personal. Part of why I decided to put my confidential data in Proton is precisely to get it out of the US, which means backing it up to a local device here in the US... kinda defeats that. On the flip side, what if something happens to the internet such that I can't get to my bytes in Switzerland?
I looked, in a cursory way, into options for backing up my cloud assets to some form of encrypted volume or device on a NAS in my home. This, in turn, brings up the eternal question of, "No, really, how do you do encrypted backups without doing the equivalent of leaving the key in the file cabinet lock all the time."
This is the wrong historical moment to be buying hard drives. They have gotten eyewateringly expensive.
I had cleared Tuesday to write, and discovered when I settled in to do so that I had lost the entirety of the post I was working on. It's just gone. I have very little idea what happened. I write post drafts in my email system because it both autosaves and has a robust versioning system I configured precisely to prevent data loss. I guess there is something that's become flakey in my email system, because the draft file apparently got clobbered by another draft file (i.e. of another document), which is something that should not be possible. This system autonumbers new drafts, and for some reason, it seems it reused the number of an extant draft when I started a new file and overwrote the extant file. Either that, or the extant draft was deleted for some reason, and that's why the number was free. In any event, I didn't notice in time, and the backup file is a backup of the new file.
This is not the first time this has happened, but the first time I have it dead to rights it wasn't just that I failed to save the file to disk (and thus reserve the number): as it happened, I had the old file open in an emacs buffer in an SSH session which timed out, so I have one screenful of the text frozen at the moment of the disconnection – and at the bottom, in the emacs mini-buffer, the confirmation from the auto-save system that it was saved. It also confirms that the draft I was working on was 2766. And 2766 is the file containing the draft of an entirely other email.
I was looking forward to getting that post out the door, and this just sandbagged me. For months, I have had one problem after another disrupting my ability or opportunity to write: medical appointments sucking up time; sleep disruptions of various kinds leaving me with too-impaired concentration; random high-urgency interrupts like an adventure with the neighbor's malfunctioning smoke detector. I had finally gotten something that was coming together. It was about six hours work I'd lost – 76 paragraphs according to the emacs minibuffer. I was just utterly demoralized; I'm a bit better now, but given that I don't know if my work is going to disappear, I am still feeling paralized about trying to do any substantive writing.
I used to have a proper remote backup system – in addition to the draft and autosave system – which would have probably been proof against this, but it's been down since the drive died, some years ago. I didn't have the wherewithal to fix it, and then my back problems started, which prohibited doing much with hardware.
Like I said, this is not the first time I suspected I have lost drafts in progress. That is not the only problem with this email system. When I moved hosting companies somewhat precipitously in Jan 2024, I didn't manage to get the whole thing fully up and running, and there are still parts of it not working right (mostly about mail delivery to me, not the reverse, but also I never got around to plugging Spamassassin in).
I kind of feel I am drowning in technical debt. In addition to my defunct backup system and my not-wholly-migrated email system (which may be randomly deleting drafts or failing to count correctly), I have recoursed to doing my business bookkeeping in spreadsheets, because I haven't found a remotely acceptable replacement for the system I was using on my Palm Pilot. Even if I could tolerate the state of most bookkeeping software, a lot of it is now In the Cloud which I'm less than thrilled with. Also, I think if I use a SaaS platform, I will need a HIPAA compatible one, bc medical.
Relatedly, I realized with the recent Proton outage, I need a backup solution for Proton. I don't even know where to start with that. I have two Proton accounts, one professional and one personal. Part of why I decided to put my confidential data in Proton is precisely to get it out of the US, which means backing it up to a local device here in the US... kinda defeats that. On the flip side, what if something happens to the internet such that I can't get to my bytes in Switzerland?
I looked, in a cursory way, into options for backing up my cloud assets to some form of encrypted volume or device on a NAS in my home. This, in turn, brings up the eternal question of, "No, really, how do you do encrypted backups without doing the equivalent of leaving the key in the file cabinet lock all the time."
This is the wrong historical moment to be buying hard drives. They have gotten eyewateringly expensive.
Cyclospora update [pest, US]
Sep. 10th, 2026 03:09 amMany years ago, I was sitting on the steps of the MIT Student Center, eating my Tosci's ice cream after SCA dance practice, when a young philosophy major I was mentoring ran up to me and exclaimed, "I just realized! You're not a platonist! You're an empiricist!" I cracked up. To this day I have no idea what ever might have lead him to think I was a platonist in the first place.
I think about that from time to time, moving in the worlds of smart sciency people. One of the things I often feel sets me apart from most of my conspecifics in my cognitive approach to the world is that I am an empiricist. I've been described as "Rationalist-adjacent", which is fair enough, but I am not a small-r rationalist. I love reason – but I love data more. Reason can be great stuff, but without valid data to reason from, it's just a way of going wrong with confidence.
This came round on the guitar again lately with regard to the US cyclosporiasis outbreak. At least one reasonable medical professional whose judgment I generally respect has announced they feel it's safe to go back to eating lettuce, because usually the cyclospora season ends at the end of August. That would be some of that them there reasoning I am dubious about.
I can't help but notice that usually we don't have a cyclosporiasis outbreak like this at all, so reasoning from what usually happens seems to maybe not be so warranted. Sure, maybe all the new cyclosporiasis cases will fall off dramatically in the immediate future because of some seasonal effect. But we don't know why this outbreak happened in the first place, so we don't know what will stop it. Like one of the possibilities here is something climate change related, that, thanks to climate change, will not be dropping below whatever threshold until later in the year than usual.
Personally, I'm going to wait for the data to come in showing that lots of people aren't getting new cyclosporiasis cases.
Now, because of the enormous lag between infection and symptoms, and symptoms and testing, and testing to reporting to health authorities collecting the information, and then publishing it somewhere I can see it, chances are that by the time the new infections numbers go down, lettuce – and the other suspect produce I've been avoiding – will have been safe for weeks.
That's fine. I'm not hurting none. I've had lettuce almost every day this summer, and blueberries too, because we've been patronizing our local farmers market here in Massachusetts, far from the epicenter of the outbreak. Blueberries are out of season now, so I'm on to peaches which to my surprise are apparently in season here to the end of September. When we get takeout, we get thoroughly cooked food. If this goes on, I might get a countertop hydroponic lettuce kit. I don't see a huge need to rush back to eating grocery-store lettuce. I don't think it's some sort of tragedy if I avoid bagged lettuce that retroactively turned out to have been safe for a month or two.
I'll agree that grocery store lettuce is safe to eat again when I see data that indicates that.
I think about that from time to time, moving in the worlds of smart sciency people. One of the things I often feel sets me apart from most of my conspecifics in my cognitive approach to the world is that I am an empiricist. I've been described as "Rationalist-adjacent", which is fair enough, but I am not a small-r rationalist. I love reason – but I love data more. Reason can be great stuff, but without valid data to reason from, it's just a way of going wrong with confidence.
This came round on the guitar again lately with regard to the US cyclosporiasis outbreak. At least one reasonable medical professional whose judgment I generally respect has announced they feel it's safe to go back to eating lettuce, because usually the cyclospora season ends at the end of August. That would be some of that them there reasoning I am dubious about.
I can't help but notice that usually we don't have a cyclosporiasis outbreak like this at all, so reasoning from what usually happens seems to maybe not be so warranted. Sure, maybe all the new cyclosporiasis cases will fall off dramatically in the immediate future because of some seasonal effect. But we don't know why this outbreak happened in the first place, so we don't know what will stop it. Like one of the possibilities here is something climate change related, that, thanks to climate change, will not be dropping below whatever threshold until later in the year than usual.
Personally, I'm going to wait for the data to come in showing that lots of people aren't getting new cyclosporiasis cases.
Now, because of the enormous lag between infection and symptoms, and symptoms and testing, and testing to reporting to health authorities collecting the information, and then publishing it somewhere I can see it, chances are that by the time the new infections numbers go down, lettuce – and the other suspect produce I've been avoiding – will have been safe for weeks.
That's fine. I'm not hurting none. I've had lettuce almost every day this summer, and blueberries too, because we've been patronizing our local farmers market here in Massachusetts, far from the epicenter of the outbreak. Blueberries are out of season now, so I'm on to peaches which to my surprise are apparently in season here to the end of September. When we get takeout, we get thoroughly cooked food. If this goes on, I might get a countertop hydroponic lettuce kit. I don't see a huge need to rush back to eating grocery-store lettuce. I don't think it's some sort of tragedy if I avoid bagged lettuce that retroactively turned out to have been safe for a month or two.
I'll agree that grocery store lettuce is safe to eat again when I see data that indicates that.
A long-time reader asked if I have any wisdom to share about getting one's first set of hearing aids, and I don't. Maybe some of you do?
He just had a hearing test showing hearing loss – almost perfectly the same in both ears, IIRC starting around 1000 Hz and tanking in a straight line on the audiogram as pitch rises – so he's been referred to an audiologist consult on hearing aids. He'd like to know more about whatever there is to know about hearing aids before talking with someone with a financial interest in selling him something. Definitely interested to hear from any hearing aid users who have strong and informed opinions about the market.
Also – this being the US – he's still working and has excellent health insurance coverage for hearing aids through his present employer, but hopes to retire in about a year, at which point he'll be on Medicare, and doesn't know how good his hearing aid coverage will be. So if there are decisions to be made that might make the most of his present insurance situation, he'd like to know about it.
I also have some questions of my own. I was surprised to learn that standard hearing tests don't go below 250 Hz and go up to 8000 Hz, and the justification is that that covers the range of human speech. Which:
1) The hell it does? You know what 250 Hz is? Middle C on a bad day in the Baroque. That is: a slightly sharp B3 under A440 tuning. Middle C is so-called because it is in the middle of human sung vocal production ranges, where below it is the bass clef, traditionally for men's voices, and above it is treble clef, traditionally for women's and boy's voices. The standard audiogram starts above any note a bass singer ever typically sings, and above 2/3rds of what tenors sing.
1a) Worse, sung vocal production is usually (always?) higher than spoken vocal production in the same person – that is, speech is lower than song. According to this at VoiceScience.org, the typical men's speaking range is ~93–135 Hz with a mean of ~116 Hz and the typical women's speaking range is ~162–238 Hz with a mean of ~205 Hz. There are no human beings whose speech production pitch range is typically above 250 hz. A hearing test that starts at 250 Hz and goes up starts higher than the entirety of typical human speech production, all genders.
2) The C above middle C is only 523 Hz. Who talks at 8000 Hz? Dolphins? Bats? Hell, 1000 Hz is just under the second C above middle C.
3) You know what's even lower than human speech? Traffic. Garbage disposals. Engines. Thunder. Rushing water. Tornadoes. Why are we pretending to only care about hearing correction for understanding human speech when hearing is also necessary for safety, and the pitches of things you might want to hear in the environment can be low?
4) No, really, they triaged everything below middle C? Like fuck music entirely? Doesn't matter if you can enjoy a rock band or a symphony orchestra any more, that's not a medical problem?
Is there some way any of this makes any sense? This all seems completely insane to me.
I had a hearing test back in 2005 because I noticed I was having trouble parsing speech at my internship. I got an audiogram, but at the time I didn't even notice what the starting pitch on the chart was. I was told that my hearing was fine – better than average for my age, actually – and that it showed no reason I would be having trouble. But in retrospect, they... never actually tested my hearing in the range of speech? WTH?
ETA: A picture's worth a thousand pitches. Here's my understanding of the situation:
Note that the ranges I specified for sung voice types is the typical choral expectations; virtuousic soloists can and are often expected to exceed these.
He just had a hearing test showing hearing loss – almost perfectly the same in both ears, IIRC starting around 1000 Hz and tanking in a straight line on the audiogram as pitch rises – so he's been referred to an audiologist consult on hearing aids. He'd like to know more about whatever there is to know about hearing aids before talking with someone with a financial interest in selling him something. Definitely interested to hear from any hearing aid users who have strong and informed opinions about the market.
Also – this being the US – he's still working and has excellent health insurance coverage for hearing aids through his present employer, but hopes to retire in about a year, at which point he'll be on Medicare, and doesn't know how good his hearing aid coverage will be. So if there are decisions to be made that might make the most of his present insurance situation, he'd like to know about it.
I also have some questions of my own. I was surprised to learn that standard hearing tests don't go below 250 Hz and go up to 8000 Hz, and the justification is that that covers the range of human speech. Which:
1) The hell it does? You know what 250 Hz is? Middle C on a bad day in the Baroque. That is: a slightly sharp B3 under A440 tuning. Middle C is so-called because it is in the middle of human sung vocal production ranges, where below it is the bass clef, traditionally for men's voices, and above it is treble clef, traditionally for women's and boy's voices. The standard audiogram starts above any note a bass singer ever typically sings, and above 2/3rds of what tenors sing.
1a) Worse, sung vocal production is usually (always?) higher than spoken vocal production in the same person – that is, speech is lower than song. According to this at VoiceScience.org, the typical men's speaking range is ~93–135 Hz with a mean of ~116 Hz and the typical women's speaking range is ~162–238 Hz with a mean of ~205 Hz. There are no human beings whose speech production pitch range is typically above 250 hz. A hearing test that starts at 250 Hz and goes up starts higher than the entirety of typical human speech production, all genders.
2) The C above middle C is only 523 Hz. Who talks at 8000 Hz? Dolphins? Bats? Hell, 1000 Hz is just under the second C above middle C.
3) You know what's even lower than human speech? Traffic. Garbage disposals. Engines. Thunder. Rushing water. Tornadoes. Why are we pretending to only care about hearing correction for understanding human speech when hearing is also necessary for safety, and the pitches of things you might want to hear in the environment can be low?
4) No, really, they triaged everything below middle C? Like fuck music entirely? Doesn't matter if you can enjoy a rock band or a symphony orchestra any more, that's not a medical problem?
Is there some way any of this makes any sense? This all seems completely insane to me.
I had a hearing test back in 2005 because I noticed I was having trouble parsing speech at my internship. I got an audiogram, but at the time I didn't even notice what the starting pitch on the chart was. I was told that my hearing was fine – better than average for my age, actually – and that it showed no reason I would be having trouble. But in retrospect, they... never actually tested my hearing in the range of speech? WTH?
ETA: A picture's worth a thousand pitches. Here's my understanding of the situation:
Note that the ranges I specified for sung voice types is the typical choral expectations; virtuousic soloists can and are often expected to exceed these.
ICYMI: Poll ongoing [healthcare/med]
Aug. 12th, 2026 03:20 pmIn case you missed it: I have a poll up about experiences with medical care. If you haven't participated, please do: https://siderea.dreamwidth.org/1902641.html
The algorithm brought this to my attention, and I thought it was very good and learned things. We are clearly not its intended audience. Just because it's a capitalist lecturing other capitalists on morality doesn't mean it's wrong. If anything, I think it makes this all the more fascinating.
2026 Aug 7: The Timeless Investor [on YT]: "The 2,000-Year-Old Ethics Test That Most Modern CEOs Fail" (by Arie van Gemeren, CFA)
On substack: https://thetimelessinvestor.substack.com/p/the-fiduciary-standard-the-west-forgot?r=d424h
( Commentary: )
2026 Aug 7: The Timeless Investor [on YT]: "The 2,000-Year-Old Ethics Test That Most Modern CEOs Fail" (by Arie van Gemeren, CFA)
On substack: https://thetimelessinvestor.substack.com/p/the-fiduciary-standard-the-west-forgot?r=d424h
( Commentary: )
2026 Aug 6: npj Vaccines [peer-reviewed scientific journal]: "A single-dose amber codon carrying live attenuated vaccine elicits pan-sarbecovirus immunity and blocks SARS-CoV-2 transmission" by Nigeer Te, Jiangchuan Li, Alex Wing Hong Chin, et al. Comes with this banner:
sarbecovirus == SARS Betacoronavirus, a subgenus of Betacoronavirus, and the one to which the SARS-CoV species belongs, of which SARS-CoV-1 (SARS) and SARS-CoV-2 (Covid) are strains. [W]
intramuscular inoculation not inducing robust mucosal immunity: previously [2021]:
We are providing an unedited version of this manuscript to give early access to its findings. Before final publication, the manuscript will undergo further editing. Please note there may be errors present which affect the content, and all legal disclaimers apply.Emphasis mine:
AbstractTHIS IS ONLY IN MICE. But. Yeah, they're claiming they've come up with a nasal spray vaccine for mice that makes them immune to and non-transmitting of all Covid variants.
Existing COVID-19 vaccines exhibit clear limitations against the continuous emergence of variants of concern (VoCs), as their efficacy is challenged by the cumulative mutations in the spike or its RBD, which is the primary antigenic target. In addition, the intramuscular route of administration is suboptimal for inducing robust mucosal immunity, which is an important factor for preventing infection and transmission in the respiratory tract. To overcome these hurdles, we developed a live attenuated mucosal vaccine by introducing amber stop codons into the accessory genome of SARS-CoV-2, resulting in a highly attenuated yet immunogenic phenotype. A single intranasal vaccination induced broad-spectrum neutralizing antibodies against diverse VoCs. A single dose of this live attenuated vaccine can confer near-sterile immunity in mice against a greater than tenfold lethal SARS-CoV-2 challenge, eliciting high levels of both mucosal and systemic antibodies. Critically, vaccine-mediated protection also extended to antigenetically distinct VoCs and even SARS-CoV [i.e. original SARS – S.]. Furthermore, vaccinated and subsequently challenged cohorts failed to transmit the virus to naïve animals, demonstrating a complete block of onward transmission. These findings establish our candidate as a true pan-sarbecovirus mucosal vaccine, offering a promising strategy to provide broad immunity and will likely defend against future sarbecovirus-driven pandemics.
sarbecovirus == SARS Betacoronavirus, a subgenus of Betacoronavirus, and the one to which the SARS-CoV species belongs, of which SARS-CoV-1 (SARS) and SARS-CoV-2 (Covid) are strains. [W]
intramuscular inoculation not inducing robust mucosal immunity: previously [2021]:
There are, for purposes of this conversation, two antibody responses our immune systems have to infection: making IgA and making IgG.These mice people are now claiming they have a vaccine that is a nasal spray which because it's a nasal spray, provokes an IgA response – in mice.[...] natural infection induces both mucosal antibody responses (secretory immunoglobulin A (IgA)) and systemic antibody responses (IgG). The upper respiratory tract is thought to be mainly protected by secretory IgA, whereas the lower respiratory tract is thought to be mainly protected by IgG.This explanation is from Florian Krammer's Sept 23, 2020 Nature article, "SARS-CoV-2 vaccines in development".
This distinction is hugely important, because, for one thing, by "lower respiratory tract", he means lungs. Lungs are protected by IgG.
What that means is that if your body learns to make IgG to fight off an infection, that infection can't take hold in your lungs. Once your IgG antibodies have learned to recognize a pathogen, your lungs are protected from it.
The other reason it's important isVaccines that are administered intramuscularly or intradermally induce mainly IgG, and no secretory IgA.Intramuscularly. You know. Like a shot in the arm.
All injected vaccinations – all – apparently target the IgG immune response. We don't know of any vaccine that provokes the body to make IgA.
You perhaps can see where this is going. The COVID-19 vaccines, like every other vaccination you have gotten in your life, provoke a robust IgG response. They teach your body to make anti-SARS-CoV-2 IgG antibodies, which will attack any SARS-CoV-2 that gets into your lungs.
It does not, however, do anything to provoke an IgA response, to defend your nose, sinuses, and throat. There was never any reason to think it would, being as it was a intramuscular inoculation, and intramuscular inoculations having never provoked an IgA response before, nobody was expecting it now.
This is a poll about experiences with health care and receiving medical treatment. Perhaps entirely unlike any poll or discussion you have encountered before, this poll does NOT concern access to healthcare. These questions are about the outcomes of the care you did have access to. Medical problems not presented to medical professionals for diagnosis and treatment are not to be included in your answers to this poll.
Likewise, these questions are not about the demeanor of your medical professionals. It is not about whether they were rude or outrageous or difficult or criminal or kind or well-meaning or tried hard. Nor is it about your sense of how skilled, smart, stupid, ignorant, good, or bad they were; it is not about your opinions of the medical professionals themselves. This poll is about the medical outcomes of treatment you received.
The questions are largely about whether you have ever or never had certain experiences. If you have had the experience asked about only once, even though you had many contrary experiences, it still counts as an experience you had.
These questions may be difficult to answer because they ask you to reflect across the whole of your life so far and all of the medical care you have received. It might take some time and thought to think through all of the medical conditions you have presented for treatment and how treatment went. Please note that your responses are editable after you submit them, so that if you remember something after submitting, you can go back in and change your answers.
In answering the questions, it does not matter the severity of the medical condition. Both serious and mild conditions count.
For questions about effective treatment, please use whatever standard of "effective" that is most meaningful to you; it does not matter what other people or health authorities consider effective, only whether you considered it effective. For questions about intolerable side effects, it means what you personally found to be intolerable; it does not matter whether other people would have found them tolerable. For questions about successful treatment, please evaluate in terms of what you would consider "succesful"; it does not need to mean "completely curing or managing the condition", but it can if you think that appropriate.
As always, this is not real science. No IRB approved this. If it upsets you, I suggest you don't do it. I won't be publishing in a research journal. I am doing this to indulge my curiosity, and maybe yours. I'm not discussing what I'm up to in advance because I don't want to lead the subjects. Hopefully I'll get around to discussing the results and what I think they show, later.
Likewise, these questions are not about the demeanor of your medical professionals. It is not about whether they were rude or outrageous or difficult or criminal or kind or well-meaning or tried hard. Nor is it about your sense of how skilled, smart, stupid, ignorant, good, or bad they were; it is not about your opinions of the medical professionals themselves. This poll is about the medical outcomes of treatment you received.
The questions are largely about whether you have ever or never had certain experiences. If you have had the experience asked about only once, even though you had many contrary experiences, it still counts as an experience you had.
These questions may be difficult to answer because they ask you to reflect across the whole of your life so far and all of the medical care you have received. It might take some time and thought to think through all of the medical conditions you have presented for treatment and how treatment went. Please note that your responses are editable after you submit them, so that if you remember something after submitting, you can go back in and change your answers.
In answering the questions, it does not matter the severity of the medical condition. Both serious and mild conditions count.
For questions about effective treatment, please use whatever standard of "effective" that is most meaningful to you; it does not matter what other people or health authorities consider effective, only whether you considered it effective. For questions about intolerable side effects, it means what you personally found to be intolerable; it does not matter whether other people would have found them tolerable. For questions about successful treatment, please evaluate in terms of what you would consider "succesful"; it does not need to mean "completely curing or managing the condition", but it can if you think that appropriate.
As always, this is not real science. No IRB approved this. If it upsets you, I suggest you don't do it. I won't be publishing in a research journal. I am doing this to indulge my curiosity, and maybe yours. I'm not discussing what I'm up to in advance because I don't want to lead the subjects. Hopefully I'll get around to discussing the results and what I think they show, later.
Poll #34937 Unaddressed disease burden
Open to: Registered Users, detailed results viewable to: Just the Poll Creator, participants: 66
Do you have, or have you had in the past, a medical condition which was diagnosed by a medical professional, for which there is/was no fully effective treatment, or the only effective treatment(s) had intolerable side effects?
yes
45 (68.2%)
no
21 (31.8%)
If you answered YES to the previous, is your understanding of the extent of available treatment options based on what you were told by doctors and/or other medical professional who were treating you, or based on your reading scientific journal articles?
Doctors and/or other medical professionals treating you
42 (93.3%)
Scientific journal articles you read for yourself
22 (48.9%)
Other, which I will explicate in comment or DM.
5 (11.1%)
Do you have, or have you had in the past, a diagnosed medical condition for which all your treating medical professionals knew of no fully effective treatment, or the only effective treatment(s) of which they knew had intolerable side effects, BUT which condition you successfully treated yourself through your own experimentation?
yes
10 (15.6%)
no
54 (84.4%)
Do you have, or have you had in the past, a problem with your health for which you were never diagnosed with any specific medical condition, despite presenting to the appropriate medical specialists, because your symptoms did not indicate any diagnosis known to them?
yes
29 (43.9%)
no
37 (56.1%)
Do you have, or have you had in the past, a problem with your health for which all the diagnoses you were given by your treating medical professionals you believe were inadequate or wrong, but were given to you because there was no known better match for your presenting problem?
yes
23 (35.9%)
no
41 (64.1%)
Do you have, or have you had in the past, a problem with your health that you presented to appropriate medical specialists, which all the medical professionals you presented to for treatment told you was incurable?
yes
28 (42.4%)
no
38 (57.6%)
Do you have, or have you had in the past, a problem with your health that you presented to appropriate specialists, which none of the medical professionals you presented to for treatment made any treatment recommendations or offered any treatments?
yes
21 (32.3%)
no
44 (67.7%)
Do you have, or have you had in the past, a problem with your health that you presented to appropriate medical specialists, which all the medical professionals you presented to for treatment told you was untreatable?
yes
11 (16.9%)
no
54 (83.1%)
Do you have, or have you had in the past, a problem with your health for which you have accessed care in another country or geographical area, by means of travel, telehealth, or ordering medical treatments to be shipped to you because you believed that there was a treatment available to you there about which medical professionals in your usual country or geographical area were unaware or unfamiliar or were unskilled with?
yes
3 (4.5%)
no
63 (95.5%)
What is your current primary nation of residence?
USA
50 (75.8%)
Canada
7 (10.6%)
UK
6 (9.1%)
Australia
2 (3.0%)
Other, I will specify in comment or DM
0 (0.0%)
Multiple/it's complicated
1 (1.5%)
If you primarily get your medical care in a country that is not your primary country of residence, enter the country in which you get your medical care, here:
Air quality predictions [meteo]
Jul. 19th, 2026 04:04 amHere at Casa Sibyllea, we're using a few online tools to navigate The Smog.
Most useful so far has been https://firesmoke.ca/forecasts/current which is an animated map of the continent that shows an hourly prediction of where the smoke will actually be when for the next day or two. We've been using this to time when to open up the windows to get fresh air. This has the advantage of not being American and thus not being subject to the vicissitudes of the US federal government.
Also modestly helpful has been Google Maps, which has a view for air quality and a separate view specific for wildfires. These are under the "Layers" tool (position depends on the platform you're using), and you might have to click the "More" option. Here's screenshots the desktop (Mac + Firefox) and Android app UIs with the Layers tools indicated. They are not predictive, they only show the present or recent past (which is unclear – these would be much more helpful if they had datetime information attached, so the user could tell how fresh it was). In air quality view, you have to click a specific location to get an actual air quality number. Widefire view also shows the rough perimeters of smoke clouds.
Over on https://fire.airnow.gov, you can see a map that has regional textual forecasts and alerts, like a weather report for smoke, and dots that correspond to actual air quality sensors, so you can see where precisely the data is coming from near you. The dots are color-coded to how bad the air quality they are reporting is, so you can see at a glance how the whole map is; when you click on a sensor location, it gives you that sensor's (presumably current) particulate reading (PM2.5), a trend indicator, and a little graph of recent readings. Down in the right lower corner, it tells you how recently the page was refreshed, which is a good thing, but that's not the same as how recently the sensors updated. (I have my own domestic sensor hardware, and have become very aware that the online data they share is not necessarily very fresh; today my air filter started alerting, but the linked app didn't show there was an issue until a half hour later.) I just recently checked this out, so I don't know how useful it will be for me, but looks promising.
AccuWeather, like firesmoke.ca, has an animated forecast map. I can't figure out how to nagivate to it directly in AccuWeather for a specific location – the "air quality" tab only has static images. I found Boston's by Google searching "smoke map today" and letting it geolocate me. You can start there and navigate to wherever. It seems to cover much but not all of North America; it goes as far north as Saskatoon, and it's not clear how far south it goes. This is also new to me, but looks very promising because it's specifically a map of "near surface smoke", as opposed to merely satellite-visible smoke plumes. Intriguingly, it seems to be reporting something other than just particulate matter: it's units are "µg/m3" which it describes as "micrograms of gaseous pollutant per cubic meter of ambient air".
ETA: h/t![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
graydon, this fascinating mashup map at earth.nullschool.net, configured to show "Wind @ Surface + Sulfate Extinction (Aerosol Optical Thickness, 550 nm)". Not sure what "sulfate extinction" means here, but the info shows it refers in some sense to SO4, sulfate ions. Nullschool Earth's main page says, "a visualization of global weather conditions forecast by supercomputers updated every three hours".
Most useful so far has been https://firesmoke.ca/forecasts/current which is an animated map of the continent that shows an hourly prediction of where the smoke will actually be when for the next day or two. We've been using this to time when to open up the windows to get fresh air. This has the advantage of not being American and thus not being subject to the vicissitudes of the US federal government.
Also modestly helpful has been Google Maps, which has a view for air quality and a separate view specific for wildfires. These are under the "Layers" tool (position depends on the platform you're using), and you might have to click the "More" option. Here's screenshots the desktop (Mac + Firefox) and Android app UIs with the Layers tools indicated. They are not predictive, they only show the present or recent past (which is unclear – these would be much more helpful if they had datetime information attached, so the user could tell how fresh it was). In air quality view, you have to click a specific location to get an actual air quality number. Widefire view also shows the rough perimeters of smoke clouds.
Over on https://fire.airnow.gov, you can see a map that has regional textual forecasts and alerts, like a weather report for smoke, and dots that correspond to actual air quality sensors, so you can see where precisely the data is coming from near you. The dots are color-coded to how bad the air quality they are reporting is, so you can see at a glance how the whole map is; when you click on a sensor location, it gives you that sensor's (presumably current) particulate reading (PM2.5), a trend indicator, and a little graph of recent readings. Down in the right lower corner, it tells you how recently the page was refreshed, which is a good thing, but that's not the same as how recently the sensors updated. (I have my own domestic sensor hardware, and have become very aware that the online data they share is not necessarily very fresh; today my air filter started alerting, but the linked app didn't show there was an issue until a half hour later.) I just recently checked this out, so I don't know how useful it will be for me, but looks promising.
AccuWeather, like firesmoke.ca, has an animated forecast map. I can't figure out how to nagivate to it directly in AccuWeather for a specific location – the "air quality" tab only has static images. I found Boston's by Google searching "smoke map today" and letting it geolocate me. You can start there and navigate to wherever. It seems to cover much but not all of North America; it goes as far north as Saskatoon, and it's not clear how far south it goes. This is also new to me, but looks very promising because it's specifically a map of "near surface smoke", as opposed to merely satellite-visible smoke plumes. Intriguingly, it seems to be reporting something other than just particulate matter: it's units are "µg/m3" which it describes as "micrograms of gaseous pollutant per cubic meter of ambient air".
ETA: h/t
graydon, this fascinating mashup map at earth.nullschool.net, configured to show "Wind @ Surface + Sulfate Extinction (Aerosol Optical Thickness, 550 nm)". Not sure what "sulfate extinction" means here, but the info shows it refers in some sense to SO4, sulfate ions. Nullschool Earth's main page says, "a visualization of global weather conditions forecast by supercomputers updated every three hours".This is a rumor, but a pretty good one run in the Washington Post:
2026 Jul 16 5:06 pm EDT: WaPo: "Lettuce supplier identified as potential source of cyclosporiasis outbreak":
2026 Jul 16 5:06 pm EDT: WaPo: "Lettuce supplier identified as potential source of cyclosporiasis outbreak":
The CDC has linked the Taylor Farms produce supplied to Taco Bell to the outbreak of the parasitic illness, according to two persons familiar with the investigation.The r/ContagionCuriosity thread has people identifying other brand names owned and operated by Taylor Farms.
Investigators have identified shredded iceberg lettuce supplied to Taco Bell restaurants by Taylor Farms as a potential source of contamination in the outbreak of a parasitic illness that has sickened thousands in the United States, according to two individuals familiar with the investigation.
The two spoke on the condition of anonymity to share details of the ongoing investigation.
Officials from the Centers for Disease Control and Prevention said this week that they have identified a likely link among cyclosporiasis cases in four states — Michigan, Ohio, West Virginia and Kentucky — marking the agency’s clearest public indication yet that many of the illnesses are connected to a common source. A top official from the Food and Drug Administration said earlier this week that its investigation involves multiple produce items, including lettuce.
“The signal we have gotten is that there is a very high percentage of people who got sick at Taco Bell, and when investigators asked what their menu items were in common, lettuce came up frequently,” said one of the individuals. When the FDA asked the company where they sourced the lettuce from, it was Taylor Farms, not just for the Taco Bell stores in Michigan but also for restaurants in the three other states, the person said.
Meteorology Youtuber Ryan Hall Yall has just issued a severe weather warning alert that is not at all reflected in the weather forecasts from either NOAA or the textual forecast from the Canadian government, but which does match what is in Weather.com's forecast for southern Quebec and does match the thunderstorm outlook map at weather.qc.ca: severe, high-winds storms, possible golf-ball size hail, low but non-zero probability for tornadoes.
2026 July 13: Ryan Hall Y'all: "Something INSANE Is About To Happen...":
Transcript:
While Weather.com reports in the forecast for Magog, Quebec:
2026 July 13: Ryan Hall Y'all: "Something INSANE Is About To Happen...":
Transcript:
Tomorrow, northern New England faces a rare mid July severe weather outbreak that looks eerily like the 1995 derecho (!!!! - S.) [...] There's a severe weather setup taking shape tomorrow across northern New England that we almost never see up here. If you live up here, I need you to take this seriously because this is a level three out of five risk that covers Burlington, Vermont, Platsburg, New York, and it reaches deep into the northern woods of Maine.Here's Wikipedia on the The Ontario–Adirondacks Derecho of July 14 and 15:
And uh here's what makes this one weird, okay? The whole pattern is tilted 90° from what you'd expect. Instead of storms riding along the front from southwest to northeast, these storms are going to fire over the southern Quebec area Tuesday afternoon and spill over top of the ridge and slide down to the east right across the border. And it's going to be like a slip and slide pointed at New England.
Before they hit, it's going to be brutally hot out there. Burlington could tie its all-time July 14th record of 100° with a heat index past 100. That heat loads the atmosphere with storm fuel and uh it's going to be sitting right under a 110 knot jetream that's going to be screaming from the northwest.
The real danger window here is going to be from 6:00 p.m. to midnight on Tuesday, okay? And the storms are going to cross the border and they're going to cause all kinds of problems starting off as supercells.
And that's actually the scary phase because if you get supercells in this kind of environment, we're talking about golf ball size hail and potentially even a couple of strong tornadoes. There's a low probability that we see some tornadoes in the beginning stages of this storm system tomorrow.
So, if you live in a mobile home anywhere near the Canadian border, know exactly where you're sheltering before the sun goes down tonight. [Promotion for his tornado alert system]
Then later during the day and into the night, those individual storms are going to merge into one solid wall of water and wind. And it's going to sweep to the south and southeast.
And that's when the main threat is obviously going to flip over to 75 mph wind gusts, maybe even higher than that. Fast enough to snap pine trees and knock out power for thousands of people.
Down in Boston and southern New England, the worst of the storms are going to stay north of you, but you'll still bake in that unbearable heat. [...]
So again, this setup looks eerily similar to the uh infamous July 1995 Adirondack derecho just shifted a little bit further northeast this time. So if it verifies, uh a lot of New England is going to wake up Wednesday with a massive cleanup on their hands.
After crossing the open waters of Lake Huron/Georgian Bay, the storm raced southeastward into central southern Ontario. Several brief tornadoes were reported. An F1 tornado struck the Balsam Lake Trailer Park near Kirkfield, flipping over vehicles, destroying several trailers and sending ten people to hospital with non life-threatening injuries. One trailer was thrown over 250 meters. Across the lake from the trailer park, straightline winds caused extensive damage in the cottage community of Long Point. Further east, near Peterborough, an F2 tornado hit Bridgenorth damaging or destroying 20 homes and a marina with winds estimated upward of 200 km/h (120 mp/h).Again, there's absolutely nothing about this risk in the NOAA weather alerts at all for the region, and weather.gc.ca has no weather alerts for it either, saying only "60 percent chance of showers in the evening with risk of a thunderstorm", despite the page for Quebec Thunderstorm Outlook Today looking like this:
[...]
Many thousands of trees were blown down across the province severing power lines, blocking roadways, and damaging homes. One person was killed, and dozens of people were injured. Eight people trapped in a flipped houseboat in Pigeon Lake near Peterborough were rescued hours after the storm. Power was not restored to some affected areas for up to a week after the event. The derecho caused CAN$53 million in damage.
The storm entered New York state at around 4 A.M. The storm slammed into the Adirondacks felling 900,000 acres (3,600 km2) of forest. The value of the loss of timber was estimated at over $200 million (1995 dollars) ($306M in 2014 dollars)
The derecho passed through the Syracuse airport with a 76 mph wind gust. A parked Boeing 727 was blown into another plane. A 77 mph wind gust was recorded at Albany. It moved into New England a little after sunrise producing 70–90 mph wind gusts in several towns in Massachusetts. Fifty people were left homeless after the derecho blew the roof off an apartment building in Holyoke, Massachusetts. [...]
The Ontario–Adirondacks Derecho was [...] among the costliest thunderstorms in US/Canadian history. It caused $500 millions in damage.
While Weather.com reports in the forecast for Magog, Quebec:
Day
86°F
precip 65%
wind WSW 15 mph
Rain this morning with strong thunderstorms likely by evening. Damaging winds, large hail and possibly a tornado with some storms. High 86F. Winds WSW at 10 to 20 mph. Chance of rain 70%.
Night
67°F
precip 54%
wind WNW 10 mph
Scattered thunderstorms, some strong this evening, then skies turning partly cloudy after midnight. Damaging winds, large hail and possibly a tornado with some storms. Low 67F. Winds WNW at 10 to 15 mph. Chance of rain 50%.
Canonical link: https://siderea.dreamwidth.org/1901776.html
[Previously: ALERT: Cyclosporiasis Outbreak Nationwide]
There's a subtle fault I've noticed about how a lot of people are thinking about Cyclospora, the organism causing the outbreak of cyclosporiasis.
People, such as over on Reddit, keep talking about Cyclospora as something that is found in soil. Which is true – but how do you think it get there?
I think the problem is that people think of feces, which is what Cyclospora oocysts are found in, as something that stays where you put it. They think of feces as a solid.
But if cyclosporiasis teaches us anything, it is that feces are not necessarily a solid.
In fact, when you're talking about infectious disease and public health in the US, you should be thinking of feces as a fluid. Not because people sometimes have diarrhea, but because here people always flush it down toilets. With water. Making sewage.
( I am so sorry to be talking about this. Nevertheless... Read more [1,000 words] )
This post brought to you by the 227 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!
[Previously: ALERT: Cyclosporiasis Outbreak Nationwide]
There's a subtle fault I've noticed about how a lot of people are thinking about Cyclospora, the organism causing the outbreak of cyclosporiasis.
People, such as over on Reddit, keep talking about Cyclospora as something that is found in soil. Which is true – but how do you think it get there?
I think the problem is that people think of feces, which is what Cyclospora oocysts are found in, as something that stays where you put it. They think of feces as a solid.
But if cyclosporiasis teaches us anything, it is that feces are not necessarily a solid.
In fact, when you're talking about infectious disease and public health in the US, you should be thinking of feces as a fluid. Not because people sometimes have diarrhea, but because here people always flush it down toilets. With water. Making sewage.
( I am so sorry to be talking about this. Nevertheless... Read more [1,000 words] )
This post brought to you by the 227 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!
Canonical link: https://siderea.dreamwidth.org/1901288.html
Heads up, Americans! Ever wonder why human feces are not used as fertilizer in agriculture? You're about to find out!
ALERT: Stop eating raw leafy greens, herbs, berries, snow peas, and scallions. Maybe other produce. Adequately cooked is fine. More details below.
The Situation: a Nationwide Outbreak of Cyclosporiasis
The US is having a exploding epidemic of cyclosporiasis.
A typical outbreak of cyclosporiasis in the US is usually numbered in the dozens of vicitms, and usually in a tight geographical area, or maybe some adjacent states. As of the last 36 hours, there are now more than 1,500 cases in Michigan,nearly 400 cases in New York (mostly NYC), more than 300 cases in Ohio, and cases spread across thirty one states and counting, including Alaska. (Yes, including Massachusetts.) Case counts have been skyrocketing over the last 72 hours, and the CDC's surveillance page is lagging behind the evening news.
Cyclosporiasis is a food-borne illness caused by a parasite. Cyclosporiasis is not usually fatal, but it causes pretty debilitating lower gastrointestinal illness, primarily "explosive diarrhea", which can last for weeks, even months untreated, and for some few unlucky bastards requires hospitalization. Right now 44 people are hospitalized in Michigan, the hardest hit state so far, as well as others in other states.
( All you never wanted to have to know about cyclosporiasis. [3,810 words] )
This post brought to you by the 227 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!
PS [me, health]
Jun. 30th, 2026 05:13 pmThe 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.)
(Apparently this is not all that uncommon, and mostly clinically irrelevant. I'm entirely bemused.)
Update (aten't dead) [me, health]
Jun. 28th, 2026 05:32 amSo, 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.
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.
Update [me, health]
Jun. 16th, 2026 08:19 pmEarly 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.
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.
