elainegrey | (morning writing, health, watching notes, reading notes)

So funny i almost burst into tears:

https://theonion.com/rfk-jr-starts-national-registry-of-introverts-who-sometimes-get-social-anxiety/

Where "funny" means overwhelmed with a sense of how unreal real is, and horror of other people.

--== ∞ ==--

Friday afternoon and yesterday i had to leave Earth, so i got a digital edition of The Deed of Paksenarrion and went off to another land. (Not sure why it's not "deeds," plural.) There's a part of the story where the main character Pak, after having risen to a high point in everyone's estimation of her character and abilities, undergoes torture and is broken. The character spirals into poverty and despair -- and i wonder how much time Moon has spent with wounded veterans. The insight and compassion of the story into suffering and then the time and (seeming to me) realistic route of healing still brings me to tears.

In normal times i would wonder how this country could not create a well resourced network to provide healing and support to the many who served and gave up so much in that service. In these times...

--== ∞ ==--

Watched The Accountant, which came out in 2016 and that makes my head hurt. I don't know how the sequel reflects the politics of autism at this time, but ... something makes me think of mandelbrot sets. (And i wrestle my brain back.) Anyhow, it was a fun diversion... Thursday night, maybe? I forget.

--== ∞ ==--

So Thursday was as normal a workday as one could hope for. I had switched my Friday follow up from virtual to in person because i thought i was having a rituximab reaction because of the red inflammation and swelling. I had some strange sweating that the onset of summer humidity (SIGH) might explain, except the dehumidifier is keeping the house at 50% humidity and the HVAC is programmed and responds as programmed.[1]

The hematology appointment went OK - i feel good about the plans to use a different med in a temporary way if i need it while we give the rituximab time. And the plan to use rituximab again if it keeps off flares for a reasonable time. Which is a couple years (and i burst into tears again). 21% of patients have seen a five year relief from platelet drops, and so, one in five isn't terrible odds: i could be one of those five.

Focusing on that what if, since i can't do anything about the other four chances.

And then i showed the nurse practitioner the reaction, and it's not a reaction, it was an infection (cellulitis) and a possible blood clot. So a noon appointment for an ultrasound at the hospital, and they took forever to get the blood draw, and Christine hadn't had breakfast so she was in a mood, and she dropped me off at the very confusing entrance to the hospital, and i made it just on time. The ultrasound tech was a bit stressed from her previous patient (who had a deep vein thrombosis and whose doctor wasn't answering calls), possibly overshared, but she showed me my healthy vein and then showed where the clot was blocking it and where the hole from the needle for the IV was. It was cool and strange to see the hole in the vein, and to see how the pressure i felt matched to the vein closing and opening until she got to the clot.

I texted Christine to let her know that i was leaving, descending, waiting but it seemed she didn't get messages until she was parked. While i was waiting i was overwhelmed with a desire not to go home, and not to have a healthy lunch, but damnit do something fun. And i knew it wouldn't be fun for Christine, but this time i had to ignore her needs and not compromise mine. By the time she arrived i'd identified a place not too out of the way with shakes, fries, and outdoor seating and told her i needed it. And of course she heard and we went, but, as i expected, she was overwhelmed, and it took her a while before she could get out of the car and join me. And it upset her on top of her own upset that she couldn't manage being there for me.

The clot and infection are, with attention, something i will recover from -- in fact, i think the first handful of antibiotics knocked the infection out. But i had to shut down, and i am still not quite sure how to start back up. I joke, yay, platelets are back because clotting is what they do (and, indeed, at 142 i'm happy to call that normal enough, and maybe Monday they will even be higher). But then it turns out that ITP can cause thrombosis (clotting) "paradoxically." Scanning the papers, it seems arterial thrombosis happens more than in the veins, so it isn't just that treating ITP with all these infusions triggers damage that in turn triggers clots.

I'm having another IV transfusion in a few weeks and weekly blood draws, obviously in the other arm, while this vein heals....

--== ∞ ==--

"Although the platelet count can drop to very low levels in patients with ITP, significant bleeding events in adults are rare, with intracerebral hemorrhage (ICH) occurring in just 1.4% (95% CI, 0.9-2.1) of adults with chronic ITP and severe non-ICH bleeding in 9.6% (95% CI, 4.1-17.1) with acute or chronic ITP in one meta-analysis."

Not sure how i feel about that presentation of "rare", and i have lots of questions about just what those numbers mean, but the voice asking just how bad it is to have low platelets is

[1]This house was designed for heating and air efficiency to stay closed up. There are no opening windows in the bathrooms, no cross ventilation windows, and the core living space only has windows from the French doors. I find it weird but have adapted. Before we had solar, we had lots of feedback from the power company that it was very efficient in its power use compared to comparable houses. (Now that we have solar power, they don't know how much of that we use so the efficiency reports aren't available.)