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

You win some you lose some:

okay, well, actually I'm only most of the way to losing my voice. And in fact I am losing significantly less blood than I was yesterday! Which is almost the same as winning!

I have also actually won tranexamic acid (... I am fairly convinced the prescription was written more as a low-risk safety blanket than as something that was actually considered necessary, but Whatever), and putting a lot of seeds into compost, and the lemongrass being happy. All of which I will take.

(And as a bonus, the current stall on Penelope's Gloves: I cannot work out where the darning needle's gone, which is alarming because it suggests one might at some point e.g. sit on it, and I want to stick a lifeline in because I am accepting the inevitability that I'm going to wind up making Several More Attempts before I actually get these decreases working the way I want them to. Obviously I have more of them, but that's not the point. I am not yet prepared to consign this one to the "lost" column...)

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

[cf. The Tiger.]

I was surprised to discover that they were blue.

Read more... )

Ultrasound (to keep Urology specifically happy) in 4-6 weeks, where the expectation is that Everything Will Be Fine. I'm to try to avoid developing a kidney infection over the next couple of days in particular (when I'm at relatively high risk of complications, hence the prophylactic IV antibiotics), and to be a bit gentle with myself til the end of the week.

(I also took advantage of the propensity of hospitals toward "white walls" and "bright lighting" to sort out a passport photo for my replacement Irish passport...)

We visited Ottolenghi Hampstead on the way home, and acquired Traditional Cake. For bonus points, this means I will have Cake to eat when I am allowed food again following my gastroscopy tomorrow.

An accounting of cake! )

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)

On the other [personal profile] recessional has been great about doing an initial lit sift re evidence base for preoperative downregulation of gonadal sex hormone production for the specific purpose of making surgery easier and less risky, which has netted me Perioperative hormone treatment of endometriosis and The effect of hormonal treatment on ovarian endometriomas: a systematic review and meta-analysis, which are definitely both in the "nice to know" category even as the overall conclusion re my specific question is "lol what systematic reviews"...

... and also the concept of "pain phenotyping" and, thence, "nociplastic pain", terminology I had not previously met but which is apparently replacing "central sensitisation". I am also finding the section of wikipedia on pain mechanisms reassuring, in that yep turns out that my internal drafting of The Book On Pain is actually doing a reasonable job of covering The General Areas even as I need (which I already knew!) to bring myself actually up to date with, like, the lit.

Not least because it contains a bunch of interesting terminology of relatively recent vintage that I wasn't previously familiar with!

(Not great time of it: e.g. having to work really hard to stifle shrieks about Wrong Pillowcase Escaped From Containment. More context does not make this more reasonable.)

(Book On Pain: working title "on pain; of pain", because I have decided that actually the Everyone's Terrible But Have You Tried Yoga? Friend essay and the Emotional Pain Is Real Pain (Things I Wish Pain Clinics Had Explained Better) essay are. a book. rather than essays. Current document length: 324 words. Think I'm gonna try writing the book and then distilling the essays back out. We'll see.)

kaberett: Photo of a cassowary with head tilted to one side (cassowary)

Read more... )

BUT as a consequence of thinking about all of this I realised the absolute best thing to change the title of my medical README to: Patient Information Leaflet.

So that at least cheered me up.

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: photograph of the Moon taken from the northern hemisphere by GH Revera (moon)
(For starters, I don't have a migraine! I am just dealing with more familiar pain, which is much more tolerable in no small part because it comes with less of the distressing cognitive impairment.)

We wandered out to the allotment a little while after dinner, when the temperature had dropped all the way down to 27 °C. We watered plants. I had a bit of a rummage; I didn't find any fake snakes but I did see what I am pretty sure was a field vole, based mostly on the relatively short tail -- I didn't get a good look at how pointy its snoot was.

And we picked berries, and we came home, and we sat on the decking for a little Detecting A Bat, and admiring the Moon, and trying to work out who the probably-a-planet was, and I saw what I am pretty sure was a (remarkably orange) meteor and then reminded myself that yes, in fact, it's Perseids o'clock.

Somewhere in the middle of all that, the vintage-fountain-pen-in-need-of-restoration I'd accidentally ended up bidding more than I intended on -- I was mid-migraine, I was curious about how much I'd been outbid by, I kept nudging up my max bid until I was the high bidder and then went "... fuck", but it was only a tenner so it'd have been fine -- got sniped back off me in precisely the way I'd been hoping for. It has been very satisfactory all round, and I am very contented.
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
i.e. hello everyone, I am home again and have been for some time, [personal profile] shortcipher has taken excellent care of me, North Middlesex Hospital continues to exist in the centre of a desolate hellscape as far as public transport to anywhere useful is concerned, etc.

Slightly more detail. )
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
(Motivated by the fact I've had this conversation with several people in the last few months.)

That's a slight overstatement, but honestly not much of one: periods shouldn't hurt so much that they impair your normal function. The idea that "everyone gets cramps", or that you're making it up, or simply not tough enough, is toxic nonsense.

Endometriosis is reckoned to affect approximately 10-15% of people who menstruate. It's pretty much the most common cause for painful periods, it's way under-diagnosed, and last I checked the diagnostic delay in the UK (between when you first tell a healthcare provider about symptoms and when you actually get the diagnosis) is about ten years.

So: hurting so much it impairs your function is really not normal. Under the cut is a discussion of a bunch of other stuff that isn't normal and might be indicative of endometriosis, and some suggestions about how to approach medical professionals on the topic.

Read more... )

Here, for reference, are the NICE recommendations relating to endometriosis.
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
International travel on the first day of my period is such a uniquely horrible experience that I can remember every single instance of it. Today's shaping up to be a good one: after a sensibly early night, I woke up a little before 4 in enough pain it was half an hour before I managed painkillers, whereupon I necked 100mg of tramadol on an empty stomach and it just about took the edge off. I can't actually tell to what extent the persisting significant wobbliness is pain, sleep dep because of the pain, an opiate high, or not having eaten enough yet because sertraline. FUN FOR ALL THE FAMILY.

*facepalm*

Nov. 3rd, 2014 01:58 am
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
Worst period pain in ages: yes, self, that is because you are currently on less-than-half-dose ibuprofen (because mefenamic acid supply problems; because insufficiently regular GP appointments; because lack of executive function/stubbornness combining to (1) prevent making a sooner appointment and (2) prevent buying more ibuprofen).

Really truly honestly there are reasons you are on every single med you take, really, and skipping any of them leads to you feeling worse, and that is why you still take them even though you resent it. Make NSAIDs a priority in tomorrow's GP appt, yeah? xx

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