A good grade

Jul. 20th, 2025 04:16 pm
azurelunatic: A glittery black pin badge with a blue holographic star in the middle. (blue star)
[personal profile] azurelunatic
One of the LED bulbs in the bathroom vanity developed a distracting (which is code for sensory nope) flicker. Since the porch fixture takes the same bulb, I proposed that the ailing bulb become a public nuisance rather than a private one.


One of my oncologists (I believe I have dubbed her Dr. Bitsblobs, the oncology gynecologist) is retiring soon. So she has been bidding her patients farewell. Apparently I am a "gold star" patient in terms of trying my best to comply with medical advice, and for self-advocacy. A good grade in cancer, something that is normal to want and possible to achieve.

vital functions

Jul. 20th, 2025 11:24 pm
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
[personal profile] kaberett

Reading. Wells, Lister, Tufte, Brosh, McMillan-Webster )

... I also technically started reading a little bit of Descartes, and more around Descartes, for the pain project -- but really not very much as yet.

Playing. A round of Hanabi with A & houseguest! We were playing with very different House Norms which led to some hilarious miscommunication, but A Good Time Was Had.

A good time was also had following the toddler around a playground, including some time On A Swing where we worked out How Legs Do. :)

Cooking. Several Questionable loaves of bread (mostly "too much liquid, ergo puddle"). Three more recipes from East, none of which were particularly interesting to us. (Piccalilli spiced rice; Sodha's variant on egg fried rice; a tempeh-and-pak-choi Situation.)

And Ribiselkuchen! I have been very very happily eating Appropriately Seasonal Ribiselkuchen.

Eating. A made us waffles for breakfast this morning. I had them with SLICED STRAWBERRIES and SLICED APRICOT and MAPLE SYRUP and also LEMON JUICE and VANILLA SUGAR and I was very happy about all of this.

Making & mending. It is Event Prep Week. There are so many potions.

Growing. ... I got some more supports in for my beans? I have just about managed to break even on the sugar snap peas this year (should NOT have eaten the handful I did...) and might yet manage to do a little better than that, with luck.

Squash starting to produce female flowers (yes I was late starting them). More soft fruit (which desperately needs processing; I will be sad if I wind up needing to just compost the jostaberries that have been sat in the fridge for ...a while, now). Many many tomatoes, none of which were actually ripe yet last time I actually made it to the plot...

Observing. Peacock butterfly at the plot! Tawny owl (audio only)! Bats (ditto)! The Teenage Magpie Persists!

Also a variety of awkward teenage waterfowl in Barking Park, along with a squirrel who was most unimpressed when our attempts to feed it mostly involved accidentally handing it an empty half-peanut-shell. It made it very clear (well before any of us had independently noticed The Issue) that it understood we were willing to feed it but that we were doing a terrible job at this and Should Try Harder. I was delighted.

Speedy update

Jul. 18th, 2025 11:13 pm
sine_nomine: (Default)
[personal profile] sine_nomine
So HGB on Wednesday (after 1st iron infusion on Friday) was 11.3 so we're getting somewhere. Second infusion (it's in two parts) was Wednesday. Transfusing tomorrow. I presume they're not running labs before transfusing though it would, in fact, be pretty helpful if they did (data nerd that I am the hospital spoiled me with the daily labs).

Then Monday I go for IV insertion at my surgeon's (because it finally occurred to me that it makes zero sense to try and start an IV when I'm dehydrated, tired, stressed, etc. So day before surgery and we super tape it down and pray.

Surgery Tuesday. He's actually going for a larger area than planned originally. Which might mean one less procedure. That would be super nice, but not holding my breath.

Off work two weeks. Hope that's enough.

Okay, time for bed.

some good things

Jul. 18th, 2025 11:41 pm
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
[personal profile] kaberett
  1. Pilates. Managed to drag myself onto the mat, at gone 9.30 p.m., and wound up smiling to myself and the ceiling.
  2. COOL SHOWER. LOW ENOUGH HUMIDITY TO AIR-DRY.
  3. Listening to the bats as I type this up. (Less active than closer to dusk, but definitely still poking their heads out intermittently!)
  4. Local supermarket has resumed stocking an apple-and-pear juice, and I do in fact prefer it to the significantly more expensive stuff from the ridiculous fancy veg box people. HURRAH for Treats For Me.
  5. Played a round of Hanabi this evening. Enjoyed discovering a Clash Of House Styles, but nonetheless pleased with how we'd done. :)

(I have also made two extremely questionable loaves of bread -- the soda bread I managed to leave out half the flour, which meant it was... not quite inedibly salty, but... definitely Really Quite; the sourdough was just too high a hydration and Wanted To Be A Puddle -- and sent a couple of e-mails I was avoiding. And ordered a Small Treat.)

00goddess: White phalaenopsis with faint veining in bright pink. (Default)
[personal profile] 00goddess
Today I had my annual eye exam. 

I only started going to this place last year. I had to go back 3-4 times, because I got glasses and I also tried lots of different contact lenses. I felt like I was a "problem patient" (because I got Covid in the middle of it and couldn't come back for awhile, because I tried so many different contact lens prescriptions and had a hard time narrowing it down, and because they kept trying to reach me on the phone and I just felt really really averse to phone conversations last summer.) I was actually a little afraid that they wouldn't let me come back this year. 

But they didn't try to stop my appointment and when I went in today, the receptionist remembered me and was clearly very happy to see me. I was actually kind of surprised that she remembered me at all.

Then, when I had my eye exam, the doctor actually mentioned to me that the staff were happy and excited when they saw that I was on the schedule. Whoa! 

Of course, this made me feel really good. But it also made me reflect on how people in my (immediate) family and in OTO have tried to convince me, and others, that I was not liked, not even likeable. That I was universally disliked. When I spoke up against abuse, I was "too harsh." When I stood up for myself or set boundaries or told the truth, I was always the one in the wrong, according to them. Near the end of my time in OTO, I was told that I wasn't eligible to be a LBM because I wasn't a good or respectful communicator. R told me that I "alienate people" and cause conflict. Michael Miller told people that I "caused division" in the local body. An EC officer spread lies and rumors about me, while being perfectly lovely to my face. (She was the one who made up the story about how every single member of the EC disliked me personally, when in fact I had never interacted with most of those people, and another EC member told me that her story was completely untrue.) 

Lately I have listened to  a few videos from a guy who recently left OTO, apparently for the same reasons I did. And the phrases he says were used about him, were the same phrases people used about me to explain why I was the problem: they said my tone was wrong, that I just didn't know how to talk to people, that I was causing drama (in fact, a friend I much admired cut me off because someone else told her I was causing drama.) And that is another thing that feels really validating: they use the same phrases about everyone. It was never about me. 

Because to be honest, what happened today, happens to me all the time. I am generally liked and well-regarded everywhere I go, except for my immediate family (my cousins and extended family love me) and in OTO. The people who want to abuse me with impunity are the ones who have a problem when I won't allow that. 
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
[personal profile] kaberett

Beginning of last week: experimented with dropping my amitriptyline dose from 75 mg to 50 mg, after a week of having been really fairly good at actually taking it at or around 9 p.m. rather than... later... as an experiment in "does this reduce daytime sleepiness?"

(Prompted by the all-nighter I pulled filling out the EHRC consultation and trying to get the house to cool down overnight during the 35 °C weather: in service of same I did not take my amitriptyline and... felt weirdly good all the following day? With no naps? Like, not even sleep-dep euphoria, just... relatively cheerful and with it and so on and so forth?)

And, see, I'd been aware that last time I tried dropping the ami dose my insomnia got much worse again, so I was alert for that, but after the first night of Fretting I've actually been doing remarkably well! It is possible that I have more or less learned how to go to sleep! I'm super proud of myself!

... and then at the beginning of this week I started going "huh, I'm getting a bunch of endometriosis-y abdominal twinges. that's... interesting. like, it's about six months post-op, and that's when pain commonly recurs, but this doesn't feel like my pre-op pain at all, so what's... going on?"

WHAT IS GOING ON IS THAT I HAVE REDUCED THE DOSE OF MY ONE AND ONLY PAINKILLER.

But the really unfair bit, right, the bit I am actually aggrieved about?

... is that apparently last time I tried this my pain also kicked up a gear and I was also surprised then and I had completely forgotten about this. I remembered the insomnia!!! I did not remember the increased pain. How dare I produce evidence that Sometimes Painkillers Work. :|

some good things

Jul. 16th, 2025 10:49 pm
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
[personal profile] kaberett
  1. Really enjoying the redcurrant cake I finally managed to make the other evening.
  2. First of the clothes-for-me from the latest Oxfam order showed up and is in fact more or less Perfect, hurrah. (Cargo shorts. Two pairs of linen cargo trousers due tomorrow...)
  3. Mulberries! [personal profile] ewt informed me that they were starting to come ready, so I took a detour via the local tree and did indeed manage to munch a token handful.
  4. I made a batch of mostly-white-some-rye caraway-and-poppyseed bread, and it goes spectacularly well with the cherry plum and vanilla jam a friend gave me at the weekend. I have been having some Very Happy Breakfasts.
  5. My extremely late-into-the-ground squash are starting to produce female flowers!
  6. And I found some more lurking long bamboo to install for the late-sown beans to maybe make their way up.
  7. AND I might actually break even on peas-for-sowing-next-year if the second flush on one of the plants does what it's threatening to, which I would be extremely excited about because I had been mildly regretting eating (instead of saving for seed) the handful we did eat, when my original intention had in fact been to Just Save Seed this year... (... but they were very tasty.)
  8. We are reading Hyperbole and a Half (the book) together a chapter at a time! They are an excellent short Shared Activity.
  9. I have this evening spent a pleasant ten minutes playing around with the dragons game and enjoying getting some very pretty possible dragons out of it. Yes good.
  10. Read about three elephants graduating to the Reintegration Unit run by the Sheldrick Trust and cried a lot. (Also at the accompanying video.) (Good crying.)
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
[personal profile] kaberett

Specifically I have tracked down a copy of Treatise on Man, which is probably the source of the claim I've seen phrased several ways, most eyebrow-raisingly and also most readily to hand by Steve Haines, attributing to Descartes the idea that pain is

something similar to hearing, it is a fixed signal and measurable response

and it turns out I've got access to a whole entire PDF which turns out to be only 71 pages, including quite a lot of fairly large images, so I suppose I'm going to read Descartes now as a break from working my way through the BBC's Higher revision guides on neurobiology, which is itself a detour from reading the introductory text on nerves aimed at undergraduates...

(The things I've actually been reading today consist of two chapters of Hyperbole and a Half, a partial chapter of The Visual Display of Quantitative Information, both as Shared Activities with A, and about half of A Handful of Flour, a recipe book I have owned for quite a while now and am rapidly concluding I might no longer wish to dedicate shelf space to...)

vital functions

Jul. 13th, 2025 10:30 pm
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
[personal profile] kaberett

Reading. This week I have mostly but not entirely been reading more murdery bot: Network Effect, Fugitive Telemetry, System Collapse, Rapport, aaaand I've also immediately launched myself into yet another quick reread of All Systems Red because we finished watching the TV series and therefore I want The Murderbot Of My Heart Thank You.

However! I have also continued reading about nerves! I have now read the entire first chapter of Nerve and Muscle, supplemented by a bunch more Wikipedia, and I think I am starting to have a better mental picture of how all of this works? I am going into way more depth than required by The Project, really, I think, but I will be happier if I know what's going on at least to the extent that I understand a little more about what it means, physically, when it is explained that some migraine preventives target Type A nerve fibre and others target Type C (which in turn is why if you get partial relief from something that targets Type C it's worth at least experimenting with adding in something targeting Type A).

And I have also made a tiny bit more progress with The Age of Seeds, but... yeah, mostly Murderbot.

Watching. Murderbot! I will concede that "I need to check the perimeter" did indeed get me Right In The Feels. I still prefer my book-Murderbot but I am beginning to acquire a better understanding of why folk love this Murderbot too.

The fanvid Bohemian Like You, by [archiveofourown.org profile] kuwdora, via [personal profile] sholio, via [personal profile] recessional.

Cooking. Several new things! Aubergine larb with sticky rice and shallot salad, lavender & honey Welsh cakes out of the Welsh cakes tourist tat mini-book, coconut pancakes. Now officially over two thirds of the way through East (with another Several planned for this week coming).

Eating. TODAY WE WENT ON AN ADVENTURE TO SEE ONE OF MY UNIVERSITY FRIENDS. I don't understand how it has been somewhere in the vicinity of ten years since I last got my act together to see this friend in particular given the part where, you know, we live in the same city, BUT we sorted ourselves out to meet up at King's Cross today and in addition to talking solidly for the entire duration we had FOOD including:

  • Ruby Violet (maxi moo moo with hazelnut crunch & raspberry, rosewater and prosecco on the grass by the canal; hazelnut & hazelnut brittle, salted caramel & almond brittle, hot cross bun, raspberry ripple, and coffee mocha ripple brought home, those last two primarily for A)
  • for lunch I had a funghi ma po tofu from rice guys, and A had a veg biriyani from somewhere I'm not immediately managing to spot on the Canopy Market trader list
  • from Bread Ahead we brought home two doughnuts -- pistachio crème brûlée for me, and something involving honeycomb for A; I think this is quite possibly the first custard doughnut I have ever eaten and actually liked (though were I to buy from them again I'd skip the pistachios)

... and upon meeting up with said friend, they reached into their bag with an "oh before I forget--" and pulled out a jar of jam, which conveniently gave me an excuse to reach into my bag and pull out the jar of jam I'd brought to give them, so I have swapped one blood orange + cardamom for one cherry plum + vanilla, and I've not eaten it yet but I am very excited about doing so.

... also raspberries, gooseberries, redcurrants, jostaberries...

Exploring. We poked around Granary Square a bit to go with Meeting Friends; we came home with lots of stickers (I also got some washi tape from that first one...), a gorgeous bowl (which she was not charging that much for at the market, goodness), and a business card for Creature Crafts by Nat so I could send their details on to Interested Parties.

Growing. ... I spent a whole day at the plot mostly reading Murderbot? (And did also do some weeding, and some harvesting, and some watering, and some general pootling.)

A couple interesting things

Jul. 12th, 2025 09:26 pm
sine_nomine: (Default)
[personal profile] sine_nomine
I just ordered a dinner that was iron-heavy. Which I haven’t wanted to do for some time. I wonder if part one of iron infusion did, in fact, start to blow open the doors of my iron processing etc.

Looking back at my pre-surgical clearance I was not, in fact, fully healthy. But it is only obvious through hindsight.

Someone described me as "A bit niche, undeniably potent, and totally unimpressed with trendy nonsense." Trying to decide how I feel about this.

I am proof positive that the sun is different now than when I was a kid. Also LA sun is different. And who knew that a sunburn could get a sunburn?

Oh, cat

Jul. 11th, 2025 10:37 pm
azurelunatic: Vivid pink Alaskan wild rose. (Default)
[personal profile] azurelunatic
Caught Yellface with her WHOLE HEAD inside the Fritos bag.

some good things

Jul. 11th, 2025 11:56 pm
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
[personal profile] kaberett
  1. The fan. Got house down to Actually Matching Outside Air Temperature in finite time; set up to experiment with running it in the bedroom overnight. (It has been Too Warm For Cuddles, which is Bad.)
  2. Made the nonsense lavender-and-honey Welsh cakes for breakfast. I was sure I had picked way too much lavender but it actually fit in the measuring spoon pretty much perfectly, and wound up being noticeable but not Overwhelming.
  3. New Murderbot novelette! I have not launched right into reading it because I am just about a quarter of the way through a System Collapse reread (and fascinated by how little of it I remember, though I concede I've read it many fewer times than All Systems Red...) so I'm going to finish that first. Which I am not expecting to take me very long.
  4. Having spent a bunch of time poking around Wikipedia, I've gone back to Nerve and Muscle and, now almost two whole pages in, it is making significantly more sense than my previous attempt. (I have not yet started making myself notes on neuroanatomy but I am definitely considering it.)
  5. It is The Time Of Year when strawberries are relatively cheap, so after dinner we wandered down the hill in service of me getting my steps, and us getting some exposure to The Breeze, and acquiring me a giant box of strawberries, and also picking up Ice Lollies to consume on the way back up.
  6. Realised I could stick a jug of water in the fridge. This has made hydrating significantly easier. (I do not do well at drinking water that isn't Cold, and the magic ice dispenser on our freezer is currently out of action.)
  7. The online Oxfam shop. Shortly to be on their way to me: a pair of cargo shorts; two pairs of linen cargo trousers; a book I previously had out from the library but which I wanted to have a reference copy of at least briefly for writing purposes.

The earth just keeps spinning

Jul. 11th, 2025 08:14 am
sine_nomine: (Default)
[personal profile] sine_nomine
It is too much. Let me sum up:
Fired previous Dr. Hematology. I suggested an iron infusion and his reply was, "Your numbers don't support an iron infusion [I note he didn't order the most critical test that helps determine that], and I will closely monitor your labs." Those would be the labs he didn't feel were necessary on a weekly basis (so nothing to monitor) and that an appointment a week prior to the July date would be fine to rectify everything so the surgery could go as scheduled. Uh no. Not how bodies (and hemoglobin) work!

So got new hematologist who seems way more on top of things AND sees my medical care as a partnership. He ran the test previous Dr. Hematology missed (soluble transferrin, in addition to everything else) and it said iron infusion (because this is clearly iron functionality anemia, not deficiency; it's like my body's response to being roughed up in surgery was to put my iron on lockdown). Bit of an insurance hiccup (why don't we spell that hiccough any longer?) but it's happening today. They actually apparently happen in pairs so next is Wednesday. Should have labs drawn again then, too, and chat about what else we can do.

Some medical explicitness ahead; you may wish to look away )

Hospitalization caused me to blow past two scheduled surgical dates. Missing the July date is not an option because I have to get home. I can't handle another extension (my original 6 month stay has doubled - with dates planned for July, October, January, and March, and staying for two months after that for more MLD therapy).

Ever onwards.

today's window into another world

Jul. 10th, 2025 10:39 pm
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
[personal profile] kaberett

a circular lamp embedded in a cracked paving stone, with green leaves visible beneath the glass

(I am continuing to think a lot about sensory systems; today I have mostly been discovering how many of the things I thought I half-remembered about nerves are wrong.)

today I have mostly been at the plot

Jul. 9th, 2025 11:58 pm
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
[personal profile] kaberett

I had a first-thing physio appointment, so I dragged myself over to the hospital for that and then nestled down in my Surrounded By Green and... mostly read Murderbot, with occasional fruit harvest and weeding.

(I have also had lots of opportunities to practise self-compassion, both in re the number of things I did not manage to harvest before they went over and in terms of having realised within the last half hour or so that one of my pens has vanished from all of the bags it was nominally in; I hope that if I go and poke around the table etc tomorrow it will rematerialise...)

July has already been busy

Jul. 8th, 2025 02:58 pm
azurelunatic: Vivid pink Alaskan wild rose. (Default)
[personal profile] azurelunatic
Susan visited!

Thorn didn't get carjacked by a Bigfoot.
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
[personal profile] kaberett

Apparently I'm not writing up a detailed version of this, so in brief...

Bodily functions feature heavily. )

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