kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)

Yesterday: first full run through the Essentials sequence since surgery. Slightly out of order (because I'd forgotten some of it), and fairly slow, but apparently getting a letter from gastroenterology saying "nah you're fine we don't need to see you again" means I'm a lot more relaxed about the risk of provoking increased reflux through exercise?

I should probably still actually talk to my GP and attempt to get a bit more calibration on what counts as concerning symptoms vs worrying over nothing, but this will do for now.

Gosh but it feels good to have done the thing.

kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
  • the Lincoln Ostomy Output Consistency Scale (and, relatedly, the Bristol Stool Chart chocolate cake [nb FB link])
  • a selection of Journal for Minimally Invasive Gynecology papers (feat. videos of the kind of surgery I'm likely to be having) (which I have not yet watched because logging in is Difficult) [ 1 | 2 ]
  • the role of CGRP in hunger signalling (awake at 4 a.m.; had moment of INSIGHT or, well, potential insight)
  • the part where heart rate is affected by CGRP, and varies over the course of the menstrual cycle, and unshockingly Does Things during migraine, and I have Fitbit-provided heart rate data since a few weeks before I started having regular migraine attacks, for the purpose of Writing Myself Up...
  • [instagram.com profile] thenatureofpaper (WHICH flowers do I want to buy myself. HOW long will I be inpatient. HOW many decorative things is it reasonable for me to take.)
  • and, completely unrelatedly, British stick insect populations
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)

We are rapidly approaching surgery attempt #2 (three weeks today!) and perhaps unsurprisingly I am becoming kind of monofocussed again.

Read more... )

kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)

I have been intermittently mentioning Issues With Reflux. When last heard from, in early September, I was... working my way up to doing something about it? Working my way up to Doing Something about it.

At the end of September, I got officially bumped up from 20mg omeprazole to 40 mg omeprazole, having merrily done this unsupervised for the week I was at Admin: the LRP, and established that I miraculously did not have symptoms. At that point the conclusion was, okay, bump me up to 40 mg, with the intention of dropping me back down to 20 mg somewhere in the vicinity of four weeks after surgery, with onward referral for endoscopy if that didn't... work.

Then, obviously, surgery was... postponed.

And then! On Monday afternoon I hit the point of "no, this is bad enough I need to go back to the sodding GP", and yesterday morning I filled out an eConsult, and yesterday afternoon I was informed I had been booked a phone appointment for... today. Which, er, is much sooner than I was expecting.

... and it was amazing. I had an absolutely classic Let The Doctors Do Their Damn Job moment: GP expressed Some Concerned Frustration that it was Bizarre that the increased dose had initially worked and then stopped, and hit the point of going "When exactly did you start noticing symptoms again?"

So I told him that it was a few days ago![1] Four or five? And I couldn't think of anything I'd changed -- I was still cutting way back on chilli, still not consuming alcohol, etc etc etc -- the only thing I could even vaguely think of on that timescale, I said, offhandedly, was that I was recovering from my first confirmed case of COVID but couldn't imagine that was relevant --

....... I think I remember reading something about that, says the GP. Let me just go check with Doctor Google...

(Yes. Verbatim. I was DELIGHTED.)

And: BINGO. Apparently there's a study that found increased acidity (lower pH) in the stomach post-COVID infection, getting back to normal for about 98% of people it shows up in around 6-8 weeks post-infection. Higher acidity is, shockingly, associated with more by way of pain and discomfort and General Symptoms.[2]

In the context of I Contain Multitudes, and all the ways our immune systems interact with our biota, and the fact that "hypochlorhydria" ("low stomach acid") lets SARS-CoV-2 pass through the stomach Still Intact, I am now vaguely wondering about the extent to which this constitutes An Immune Response, but I should really attempt to not fall down that particular rabbit hole, at least not tonight...

(Next steps: bump the omeprazole dose up again for a week to try to get things under control; referral for endoscopy being made; please go get these bloods done ASAP because they'll want to see the results. No idea on wait times. And all of this after I'd said "oh! okay then, I'm totally happy to leave it for now and come back in the new year if it's still a problem!" so, like, I'd like to keep this one, thanks, I like this GP.)

[1] In fact I double-checked my notebook after the appointment and discovered that I first noted An Unpleasant And Unwelcome Resurgence Of Reflux on.... 07/10/2024.

[2] So far I've failed to track down the paper -- I think the journal was "BMU" and it was published probably around 2021? But I was absolutely getting Stats, Clearly From An Abstract quoted at me...

kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)

So uh yeah anaesthetics said "... no. come back in six weeks."

So that's not happening tomorrow.

There are, as I say, upsides -- "longer to forget what The Concoction tastes like" chief among them, but also feat. e.g.:

  • greater ability to check on the progress of the saffron
  • VEGETABLES (I am celebrating by consuming vast quantities of nuts, pears WITH THEIR SKINS, parsley, et cetera)
  • additional opportunity to e.g. tidy the damn sofa, make a pile of cake, post people Objects various, have some quiet time at home, have more of the stationery I have been Aggressively Self Soothing With show up for me to Organise, ...

Also: today's realisation? is that messing around with flex-nib writing (see The Zanerian Manual and The universal penman, both via Penna Volans) requires me to hold the pen sufficiently differently from my default, and to then pay enough attention to What I Am Doing Right Now, that... it usefully functions as a moving meditation! So I've got that stockpiled as a partial substitute for What I Get Out Of Pilates post-surgery...

cursed

Aug. 22nd, 2024 10:26 pm
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)

Today's scheduled Ruby Violet redelivery showed up via tracking as "due to be delivered on Thursday 22nd August 2024 between 17:18 and 18:18" up until around 18:19, whereupon it shifted to "Sorry, we seem to be running late" (or wording thereabouts).

Read more... )

I recognise that this is a fairly minor curse as these things go (though I note that it is at least somewhat contagious: A ordered Two slightly different Things from One Place, one for him and one for me, and a single package showed up today containing... the thing for me and not the thing for him) but I am still Indignant and also Cross about I Just Want A Treet. (Also I somehow managed to leave one of the ice cream flavours out of the order and didn't manage to scrape together the brain to request the redelivery swapped that in instead of a dupe of one of the other swaps. Sorry, A, it's only the salted caramel & almond brittle...)

kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)

Uncheerfully: I have spent a lot of time hanging around waiting for DHL to maybe consider being less cryptic and more, you know, of a delivery service. Alas the big box of ice cream did not arrive today, and is now marked as returned to sender. What's going to happen next? Who knows! But:

  1. I brought home some mulberries, and have Plans for getting more. (Also I ate some plus a custard tart while sat on a bench underneath the tree.)
  2. The Child (who I think I have not previously mentioned) asked of its own accord if we were coming to visit today. I am delighted. (We drew trains.)
  3. Have Made Arrangements for the Zoladex due to be administered while I am In A Field, so as not to require any of arriving late/leaving site/delaying dose, all of which would be suboptimal.
  4. Did a thing with the laptop that would prior to yesterday very definitely have caused it to fall over. It merely thought quite hard. (I am baffled that old laptop Coped Better and need to have a poke around to see what it even contains, then.)
  5. Cycled up hill entirely in middle gear for First Time Ever, which I am Very Proud Of, and which continues to convince me that whatever it is that is Wrong in my hips probably involves the gluteus medius. Which means I can work on improving it.
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)

(I have been asked about this elseweb and want a static place to link to!)

A5 notebook in cover, open to show a colourful physio tracker and a fairly plain sleep tracker

more detail )

bodies

Mar. 27th, 2024 09:35 pm
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
  1. This morning was the second morning running I had to divert from breakfast etc to wash blood out of bedlinen. It has been A While since this was last an issue; I can but assume it's something about sitting-up-in-bed-to-have-hair-brushed (as distinct from "remain horizontal until going directly to the bathroom") that's the problem, which is Somewhat Frustrating.

  2. I am reading a book on psychosomatic illness, by Suzanne O'Sullivan, that I think I was pointed at by Gavin Francis' Adventures in Human Being (though it might have been Recovery, which I finished the day I borrowed the latter; I placed the hold on It's All in Your Head that same day). It is careful and nuanced and interesting and talks frankly about her own fallibility; it's prompting a lot of thinking about my own illnesses; it's a fascinating sideways insight into culture around psychosomatic illness and patient complaints at the NHNN, which is where my headache clinic is; and also I am developing a cold sore, which only happens when I am feeling Particularly Stressed, which suggests that I am finding the whole experience Somewhat Stressful. (I'd say it seems a little on the nose, but it's not, it's in the corner of my mouth.) (One has to laugh.)

kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)

Admin: the LRP episode 1 is coming up faster than, I think, anyone would probably like. The plantar fasciopathy flare I set off last summer is still grumbling along, at a low enough level that I've been ignoring the bonus extra physio for it buuut it reliably flares every time I increase the amount of time I'm spending on my feet. Which I will definitely be doing in a field.

So I have taken a deep breath and Started Doing My Sodding Bonus Physio and have, at least, discovered that some driftwood I picked up in Cornwall for possible crating purposes is exactly right for doing The Most Important Exercise After Leg Stretches (heel lifts with toes dorsiflexed), which is making even getting started much less aversive, so I'm now trying to build in doing a set of those every other time I get up to pace.

The other thing I am trying to do is sort out actually managing to keep up the whole "Pilates three times a week" thing while... spending a week in a field. I definitely feel better for doing it in the short as well as the medium term, and it's also a Very Useful Way for me to make sure I take (and for that matter model taking) Actual Breaks. Like, only two of them, and only an hour each, but still. Alas the scheduling challenge is not the only logistical issue: there is also the minor matter of needing a flat, rigid surface I can put a mat on, that isn't any of (i) underfoot, (ii) two feet off the ground so I can roll dramatically off it while pretending to be a seal, and for that matter (iii) something that will be damaged by me pretending to be a seal, thus causing other departments more work and aggravation. Plus, you know, ideally under cover, so that when it rains...

The ISO containers I have any claim to are both unsuitable, for reasons. I have been asking around a bit and have an offer from someone to bring an extra Big Bit Of Plywood I could just dump on grass, which is mildly suboptimal for reasons. One of the other departments has said "hmm, I think we might be able to help"; depending on how that works out I have a shortlist of people to mug for van keys (at the top of which is "big boss I hassled into getting physio"). I am mildly trepidatious and definitely intending to shift forward from my usual Tues-Thurs-Sat pattern (which gives me slack if I have to miss a day) to Mon-Wed-???Fri, which would let me do one session at home, one session before any players and most crew arrive, and one to fit in Somewhere during the event proper. For bonus points I am planning to repeat the Executive Decision I made last time I was away from home for a week, of "cool so I'm doing the Essentials sequence only", which actually takes me closer to half an hour than 45 minutes. I am sure I will waffle further once these theories have been applied.

Meanwhile, some things that are making me happy this evening: scrolling through the [instagram.com profile] bokumondoh back catalogue; getting a double batch of rice pudding started; excellent information about a Relevant Toddler's ongoing indoctrination into The Banana Discourse, which I started last week (A opens bananas from the wrong end. the child wanted two bananas opened.)

kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
  1. Have received text message with delivery window for tomorrow's migraine meds acquisition process.
  2. Relatedly: A accompanied me on a Stupid Little Walk this evening, in the rain and the (blessed) dark, and we have acquired both Trifle and Cheesecake. (Probably this time round it will be the Cheesecake, rather than the Trifle, of Positive Reinforcement. I am trying to not turn the misery trifle into an aversive stimulus.)
  3. Two loaves of bread ready to be baked tomorrow morning (one for normal purposes, one specifically to make bread-and-butter-pudding for A's birthday this weekend).
  4. Very expensive slippers, still. I am consistently capable of having actually warm feet (well, except when I am in bed, where slippers are Not Allowed, by myself, i.e. without a hot water Adam; whereupon I engage in mild contortions so as to wind up lying on my back with my legs crossed and my feet tucked into the crooks of my knees). I actually had to swap to Less Warm Slippers while trudging during my Duolingo this evening. (Current routine involves Less Warm Slippers first thing while I'm dragging myself through the shower and physio that works better with bare feet, then swapping to Warmer Slippers once I'm done with wanting to get them on and off repeatedly.)
  5. I continue to accumulate evidence for my theory of endometrioma-induced chronic migraine. (This is a good thing insofar as treating myself as an experiment entertains me, and also Being Right provides The Illusion Of Control. Obviously the actual data collection isn't much fun.)
  6. I have discovered that fruit bat Experiences are a thing.
  7. I utterly failed to work my way through Bruce D. Perry's video/seminar series on developmental trauma + COVID-19 back when the relevant central list was still up on the main neurosequential model website, but it was archived and the videos are still live on YouTube, so I'm starting to work my way through those while Doing Mending now that I have actually read (and got on very well with) The Boy Who Was Raised As A Dog.
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)

I am sort of fascinated that everywhere seems to say "we don't know why this happens" despite the fact that we also know that the place that anti-CGRPs are most likely to cause side effects is... the gastrointestinal system. Like??? surely "proposed CGRP signalling mechanism" ought to be at least being proposed?

-- ah, okay, turns out that if I poke academic literature rather than patient advocacy orgs, I start getting some mention of this. But only since around 2021, which I am mildly baffled by.

(I also need to actually hunt down more descriptions of What It Is Like and What The Hangover Is Like, because today I am much less photosensitive and the nausea's cleared off, too, but everything from the muscles on out in my general stomach Area is sore enough to be causing Difficulties. Did everything go into spasm and now I get the aftereffects of that? Did the Pain just make all of those nerves realise they could be constantly going AAAAAAAAAAH again? Is something else going on? I Have No Idea But I'm Bored. Default action of "throw painkillers at it" contraindicated by, you guessed it, migraine.)

kaberett: Sketch of a "colourless, hamsterish"  animal having a paddy. (anxiety creature)

The best explanation I can come up with for this evening's Symptoms is "I suppose I get abdominal migraines now", and: no. Really REALLY not the time. Please make an appointment; we are scheduling in February.

kaberett: Grinning emoticon. (:D)

Realisation while wrangling laundry, presented as a series of facts:

  • I have both migraine and endometriosis
  • migraine means that I am limited to 6 days (or 8 if I push it and am willing to stare down my migraine team) of painkillers (which includes paracetamol, NSAIDs and codeine, as well as triptans) per month
  • a thing that Mostly works to head off incipient breakthrough migraines is The Frovatriptan Protocol, which consists of frovatriptan + mefenamic acid (an NSAID) + paracetamol (optionally) + (in my case) prochlorperazine (definitely)
    • each time I use The Frovatriptan Protocol I use up one (1) of my Six (6) Days Per Month
  • migraine is. not. my only source of chronic pain.
  • but I'd rather deal with endometriosis- and joint- etc etc etc-related pain than migraine fuckery, so I am currently significantly undermedicating my non-migraine pain
  • BUT
  • ON THE 14TH OF SEPTEMBER, NICE APPROVED RIMEGEPANT FOR ACUTE USE
    • rimegepant, as the name suggests, is not a triptan -- it is a gepant
    • this is a class of drug that works on the same basis as the stabs I'm currently using and responding generally pretty well to -- it targets CGRP signalling/pathways/thingy
    • crucially, it has been conclusively demonstrated in clinical trials that this medication DOES NOT contribute to so-called medication overuse headache, so taking rimegepant does not count toward the six-day budget
  • my next headache clinic appointment is on the 18th of December
  • which is more than 3 months after the NICE approval was issued
  • so I will theoretically be able to switch from The Frovatriptan Protocol to rimegepant, thereby freeing up all my six-day painkiller budget for managing non-migraine pain

AT WHICH POINT I might even be happy cancelling my pain clinic referral? We'll see.

kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)

Had, for afternoon tea, (1) a toasted teacake and (2) a mug of weak jasmine tea. I was not specifically craving caffeine-as-tea, but wanted to double-check whether I could safely drink it in small quantities given that I seem to tolerate it in the context of the specific cravings!

And have spent the rest of the afternoon-into-evening twitchy, tense, constantly on the edge of tears or hyperventilation or both, and generally suffering from a creeping sense of dreadful foreboding. In, er, exactly the way all past data suggests was entirely predictable.

Nonetheless: alas.

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