elainegrey

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.

--== ∞ ==--

 ( Read more... )

I probably get to go home tomorrow -- sorry if silence was worrisome. Thank you for all your support and care.

The schedule for med delivery had me with interrupted sleep all Friday night as every hour or so bottles had to be changed and vitals checked until 5 am. Saturday the treatment started earlier and was done by 1 am. I have had to be very careful about the IV port in the crook of my elbow -- partly because it was oozing blood because of the low platelets, partly just to keep it working, and it is a little uncomfortable, typing hasn't been easy. But the last infusion finished in the early evening today ,and i just need one more dose of steroid pushed through and then the port will be removed: yippee. Lemme type.

I have also had family visits. My sister and dad stayed with me once i arrived at Chapel Hill until Christine came in the evening.  On Saturday I was so glad i was not tied down with tubes  when my sister in law visited. They have now announced that B-- may only have weeks to live, and it was good to hug her and hold her hand. My sister and niece gave me a lovely visit today, in happy Easter vibes. My dad has visited every day, and Christine as well. My nephew W-- was apologizing he couldn't visit and i told him i would listen to his winter concert again. It was lovely and i am loved, but my computer didn't get my attention. (And it if it did i was reading my chart and researching drugs.)

--== ∞ ==--

On Saturday morning i got a little more clarity about the initial reading: the number of platelets was under the threshold of 3k platelets per unit -- the limit of the lab equipment's capability to count. Depending on your communication style, apparently, one person said 2k (per some unit, which is under 3k) and the ER doctor at the county hospital was "not detectable." And i've grown more appreciative of the risk of a brain bleed at those numbers, although i think the ER doctor would have had is own anxiety driven aneurysm if he realized how many potholes were in the roads between the Siler City and Chapel Hill. I had a cat scan because i had a slight headache.

It's so weird. I don't feel like a fragile china cup.

"When the count drops below 50,000, bleeding can occur more easily after injuries, and counts below 20,000 can lead to spontaneous bleeding" This morning's read was above 20k, they seem willing to let me go above 30k

--== ∞ ==--

I had a new treatment today, Rituximab, which may help me not have another drop for a longer time. Optimistically, from the doctor, there have been patients who reportedly have gone for five years without a relapse. Stats aren't quite as optimistic, but i am grateful that in the past 15 years it seems this treatment has moved from what they fall back to if the splenectomy fails, to use as soon as the second drop

I probably still have a hard time appreciating the spontaneous bleeding risk.

--== ∞ ==--

It's surely been difficult for Christine to have two absences at home. I have a lifelike stuffed toy cat with me, so nurses and nurses assistants have asked if i have cats and i have finally learned to say "two" and not tear up. But i know i will have more tears to cry. I know i cry about Greycie Loo out of the blue still, because we thought we had so much time to still have with her, and the cancer took her so quickly. Luigi has been so fragile-seeming for the past few years - i suppose i expected him to die in his sleep. To have him loose his legs like Greycie Loo did, to have him so bravely try to drag himself to the bathroom, for him to not be distressed but relatively composed, oh sweet old man cat.

--== ∞ ==--

I understand tomorrow will be hurry up and wait as discharge churns through paperwork. I'll have a last dose of steroids so will have this energy boost to get me home. Then i know i will crash on Tuesday. I am not looking forward to work on Wednesday. I hope i'll have recovered from the steroid crash by then.

Saturday attended our warm and sunny Hands Off protest. Apparently around 1000 folks had registered. I'm not sure what the average "signed up but didn't attend" vs "attended but didn't sign up" ratio is. Lots of people i met or knew had not signed up (EG: Christine, my sister, many of the yoga center folks).

Christine wanted to go to both Pittsboro's and Chapel Hill's gathering, so I met up with a yoga community i have only occasionally engaged with and walked over with them. Once there, my sister and i realized we were both there, so eventually we met up. After the march around the large block, she and i went for a cider. She shared that nibling E had finally recovered after a spring break of being sick, and they were going to Carowinds -- an amusement park about two an a half hours away -- on the next day. My sister made some sad sound about how E wanted ride the roller coasters and that was not something she enjoyed. "Oh but i do!"

After i got home we finalized that ,yes, i would go with them. I realized E's birthday was coming up, so i bought "Fast Lane" passes for E and myself. E was delighted with the gift. It wasn't that necessary, as lines weren't crazy long, but it was a delight to not leave my sister behind -- but peer pressure?  We got my sister to ride many of the rides. Over the day she reflected on trust and my dad's constant harping on metal fatigue etc etc, so i think she was reflecting on why she was afraid of them.

I realized that OMG they are DIFFERENT from the roller coasters i grew up with.  Hypercoasters and gigacoasters are new -- and a really different thing from the wow of Space Mountain and rides at Carowinds when i was growing up. But wow wow wow what fun. And by some fluke E and and got to ride in the front of the Fury 325: looking down the 325' drop at 81° is AMAZING. It was strange riding the 1980 built Carolina Cyclone after the couple rides on the 2019 Copperhead Strike: it was so short and so jerky. And it was worth going to REI to buy a strap to hold my glasses on: i don't think they would have survived. At the end of the day, my sister rode the gigacoaster Fury 325 with E and I, one of us on each side, and i think she actually had fun.

We might go again when my brother's family is visiting: we chatted with him during the drive to the park and he too enjoys roller coasters. I don't know if i can rank the coasters i enjoyed most: Afterburner, Copperhead Strike, Fury 325, and Thunder Striker. We didn't get to the Cobras coaster -- something to look forward to.

I did feel i was on the edge of not fitting in the seats.

We came home to more leaves than when we left: it really seemed that the record and near record heat in the area has pushed leaves out.

Despite worrying about running out of energy, i have been reasonably energized since this weekend. Monday was very rainy and grey, so i wasn't planning on being outside. I spent the work-to-dinner time sorting out an insurance claim against our 2024 policy that is going through yet another correction (now some claims are denied because they are too late). The weird data handling with splitting up the twenty odd appointments into different claims, then having most but not all in identical statements of benefits took carefully mapping to a table to understand what has happened at the insurance company.

It feels intentional.

Tuesday's condition of enoughness is protecting the blueberries from the freeze. Nothing to be done for the leaves that popped out from the fig and the flowers on the mulberry. Maybe it won't really freeze.

Health: platelets back up on Monday and i think i was feeling better on Sunday. Spent some time looking for details on measurement uncertainties and natural variation in platelet counts.  I suspect if one knew the equipment that was being used there would be reference material, but there's no rule of thumb. Using some possibly unreliable numbers i found, i have established a range of normal for me that includes both my variation of numbers in the normal range and the measurement uncertainty. Ups and downs within that range i should consider as noise, not trend.  I did have a drop the previous week, and i think i did sense that in my body.

Feline health: this weekend was punctuated by Edward being sick with unpleasant fluids in many unexpected places around the house. Christine thinks she saw him hunt and catch something Thursday afternoon; perhaps that was a cause. This afternoon he seems to be getting better.

Luigi is even less mobile than he has been. He is enjoying some time on the deck in the sun (and pollen). We wonder if he is in discomfort or pain and when we should let him go. I think he's still OK, but there is something even more aged about him. He is getting matted but distressing him and triggering his breathing difficulties seems wrong at this point.

--== ∞ ==--

Work:  hyperfocusing on learning the OpenID Federation specification and the draft profile for higher ed, plus playing out the spec in a toy universe i created. I sure hope it can be as useful for others as it was for me because i sunk a great deal into it.

Escape/reading:  i spent the week very focused at work and very much escaping into Elizabeth Moon's Paladin’s Legacy series. One issue was that the books didn't really end, but just were continued in the next volume, so my hyperfocus tendencies really really wanted back in the story because there wasn't a strong done signal.

Even now, with some bits tied off, there clearly are narrative arcs ready to keep going. (Finds blog, finds title of a book sent to the editor, recognizes one thread that seemed ready for a book, drums fingers wondering when it will be published.) I am very tempted to read again: i know i skim parts wanting to get to the next plot bit. Rereading i will likely visualize more. Probably could study the maps better.

I found the theology and religion in the books interesting. SPOILER: part of the story has young people suddenly showing a capability that had been labeled as evil, discovery of writings from the time of one of the more politically established saint/gods showing the saint/god's compassion and that the capability itself was never one that the saint/god condemned. The magery feels very much like a metaphor for how visible trans youth became in the past few decades. I think this was in the... fourth book? Written a decade ago.

--== ∞ ==--

So, i've been ignoring spring, sorta. Did see fireflies the past three nights. (https://www.backyardecology.net/spring-treetop-flasher-our-first-firefly-species-of-the-season/)

Made third batch of seed crackers.

Had lunch with nephew down from NYU, lovely.

Went out on boat with Dad. Dad headed it into a huge flock (raft?) of cormorants. He wasn't wearing his hearing aid and could not hear me asking him, telling him to stop. He clearly wanted to get a video of the birds in flight. He sent some of them up, and i finally yelled stop loud enough to keep him from disturbing all of them. I was steamed. "But other boats speed through them." I growled a standard "just because everyone else" response and asked him if he wanted people driving through his bedroom. When he complained to my sister she informed (reminded?) him of the definition of harassing wildlife.

He posted his video on line -- and then heard me. Sigh.

Written on Thursday morning Mar 13

Let's see: last Monday's blood draw was still within normal range. Visit with my primary care provider (via telepresence, yay) was a nice chat and i was offered a nice stack of possibilities other than hospitalization should the need arise for me to receive the  IVIg antibody infusion again.

Let's not have that happen. My work has incredibly good insurance when combined with the care available locally, but even knowing it has no direct impact to my pocketbook, I'm still in shock to see the cost of the treatment as a line item. I am also in shock to see the discount that is written off the bill due to the insurer. Maybe when the revolution comes we can have a sane way of handling health care.

Surely there is some correlation with the line item cost of the treatment and the cost to produce and distribute the antibodies.

I also got a slightly more clear hand wavy explanation for why the antibodies from other people help overwhelm the spleen and protect the platelets -- they apparently attack my confused antibodies that are attacking the platelets? And provide some camouflage?

Anyhow, i envision a future of rare flares identified before i get too low a platelet count. (I kept saying platelets instead of petechiae during the appointment. Great. I've scrambled primary keys on two more rows in my vocabulary. This happens too often at work but fortunately people have patience with it.

Saturday i add: i have had a good call with a therapist and will have a formal intake appointment Monday. Our primary goal will be to work on what does  "I don'wanna do anything but sit on the couch with the computer" mean: when is it time for me to kick myself into gear and when is it time to rest? (And when is it time to go get a blood draw.)

I also had  a pleasant call with the UHC Nurse educator who did check to see if there were any better weekend options for blood draws for me.

--== ∞ ==--

Driving around provides visual confirmation of spring, but it just arrived here yesterday with a sudden high of 84°.  Violets opened, and i had a handful on my lunch salad. (Local wild violets taste like lettuce: neither the floral fragrance or sweetness is present. But PURPLE!) The plants were killed back by the cold, so there aren't that many violet greens yet. (I looked in the garden and there's a chance the scented European violet plants survived the weeds of last year.) The saucer magnolia now has pink buds all over. Red maple is blooming - too high for me to try any flower clusters. Spicebush buds are pretty bland, but once they open the sweetness is there. I didn't notice a spicy note. I could imagine adding those to a salad.

Saturday i add: by the end of Thursday the early daffs are blooming in the back yard. I feel like i had more early yellows but only one clump is blooming. A yellow daff that was from some forced grocery store display is blooming at the base of the east tulip poplar, hidden by the log "fence". I found tiny bluets blooming (Houstonia pusilla), a tiny spring flower i am used to seeing in mid February  -- and i am very excited because i thought i had mulched them out of existence.

Birthday breakfast out with my sister and dad (it's his birthday, too). L pressed dad to stop his "George Will" "make people think" facebook posts and asked him to share his authentic truth that he has family members that the ... i have no words for this, slow coup?  ... is hurting. L was in a place of Not Tolerating Right Wing People, Dad wants to save them. To try and change subject, L shifted to asking about having an estate sale of family stuff, which led Dad through one of his well trod rumination paths. He asserted we didn't know what it was like, looking forward not to a milestone of triumph but to the long decline of aging. As i wrestle with my fears -- how much yard can i care for with the exhaustion and fatigue i had last fall showing up again? Remembering how the exhaustion last fall was making me think about retirement, remembering how just a few weeks ago that seemed so silly as i fell vital again -- Pfft, Dad, you've put off facing the reality. And, i'm pretty sure he's just going to continue putting off making decisions.

My sister let him know we'd be there to make decisions for him when it was time. Which, threat? promise?

When we went back to politics, we all were blunt about our fears. Dad thinks the country is about to fall apart. He's afraid for us all: i gave him grits for his birthday. We'll need grit to get through.

Aren't we lovely people to celebrate birthdays with! It sounds terrible, but it was authentic and honest talking between us, which may not be civilized, but it was connecting.

( Read more... )

I am happy to see glimmerings of spines in Republicans in Congress, so i am going to celebrate Tillis' speaking out on the Senate floor in opposition of Putin and for Ukraine.

And, i was a little confused when i was sent a press release statement from this list: https://oversightdemocrats.house.gov/news/press-releases. When it said ranking member, i figured it was ranking Democrat member, but no, it's a Republican (I'm bad at remembering names):

"Ranking Member Connolly Demands OPM Withdraw Email Threat and Renounce Musk’s Latest Attack on Public Servants https://oversightdemocrats.house.gov/news/press-releases/ranking-member-connolly-demands-opm-withdraw-email-threat-and-renounce-musks"

"Ranking Member Connolly Calls on Speaker Johnson to Condemn Violence and Bar Insurrectionists from the Capitol https://oversightdemocrats.house.gov/news/press-releases/ranking-member-connolly-calls-speaker-johnson-condemn-violence-and-bar"

"Statement from Ranking Member Connolly on Trump Administration’s Efforts to Silence Rep. Garcia https://oversightdemocrats.house.gov/news/press-releases/statement-ranking-member-connolly-trump-administrations-efforts-silence-rep-0" (Ends with "I can assure you that Congressman Garcia and our fellow Oversight Democrats will not be deterred by these threats, and we will continue to fight to safeguard our democracy and protect the rights of the American people we serve.”)

--== ∞ ==--

In other celebrations i can, if attend to it, taste the orange marmalade i added to my last loaf of buckwheat bread. I also like the tofu spread i made, although i do think next time i will cut way back on the nutritional yeast.

--== ∞ ==--

I am a little distressed by the return of the ITP (Immune Thrombocytopenia) and a seemingly correlated shortness of breath. I couldn't have gone for a draw on Saturday afternoon, it turns out, and i decided to skip going to the county hospital on Sunday morning.  Off to the nearby clinic this morning (fingers crossed i can just show up there).

A little sliver of moon, low in the south east, gleamed in the brightening sky this morning.

--== ∞ ==--

Yesterday i was out of it, having had a very poor night's sleep. The two nights previous my watch was yelling about my heart rate variability being too high - it's possible i was having CPAP mask/apenea events. Saturday morning i woke 3 am-ish breathing hard and fast. It took a long time to get back to a regular breathing. I guess i didn't do the saline nasal rinse too many days in a row.

My cough was back a little yesterday, which maybe is the poor breathing?

The freaking spots are back, too. I probably should have immediately gone for a blood draw (but it would have had to have been to a hospital); i'm trying to decide if i should go this morning (ugh) or wait until tomorrow morning. Good news is i have a hematologist visit in early March.

--== ∞ ==--

Now that i have a working python/Jupyter Notebook environment back, i want to try and get some better skills with Python's data analysis.

Dad comments that he's an Eisenhower Republican, and i roll my eyes thinking how long ago that was meaningful. I was wondering though how Eisenhower fit in his and my lifetime. I knew "before i was born" but that wasn't informative, so i made a timeline. Interestingly his experience of Eisenhower relative to his age, is similar to my experience of Reagan. Both were presidents before we could vote, serving two terms, and our first presidential election was for the president in the following term. Intriguingly, the current most populous birth year in the US is around 1991. And in a similar way, the George W years followed for them. So, how do i frame for Dad what it might be like for them if they were to imagine thinking back to Eisenhower: apparently it would be for him to think back to Taft.

Knowing Dad's born before the boomers, and i'm on the downward birth rate slope of Gen X, neither of us is very representative of the larger cohort of voting age Americans.

(Apparently Millennials outnumbered Boomers in 2020, per Pew, and Gen X will out number Boomers in 2028.  I do have the Gen X bitterness about Other Generations. Although an advert came on recently and i was stunned because it was for ME, an ad for my age cohort! I can't remember it, but i remember the jaw drop.)

https://www.pewresearch.org/short-reads/2020/04/28/millennials-overtake-baby-boomers-as-americas-largest-generation/

https://www.marketwatch.com/story/board-games-and-firepits-senior-communities-are-pulling-out-all-the-stops-to-lure-generation-x-heres-why-2d2a31fb

"Gen X members are projected to outnumber boomers starting in 2028, when they will number 63.9 million, while there will be 62.9 million boomers, according to the Pew Research Center."

--== ∞ ==--

Still trying to get to previous comments (as well as the email that sort of jammed up my effort to respond promptly).

Exciting: Apparently pomegranates can be grafted onto crepe myrtles. I have two crepe myrtles i have been planning on eradicating, as i think in ten years they'll be considered invasive. I ordered six Salavatski scion cuttings from someone in Virginia and will try a few grafting techniques.

I hope the weather change doesn't damage these while shipping.

--== ∞ ==--

Celebrate: i picked up a good looking Kanza pecan tree on Thursday, and i got it in the ground after work last night.

--== ∞ ==--

Christine has shared her latest multimedia piece with free subscribers at 17 sounds

--== ∞ ==--

Learning about running AI on my laptop (queries stay local, eventually could apply to private documents). Rather excited about a private option.  Because it was local, i asked an instance of deep seek to help extract the email addresses people entered in the Zoom chat so we could all stay in touch with one another. Highly entertained that it refused to help me, and suggested we create a form to collect addresses. It slow running on my laptop and i was most of the way done doing it by hand when i got the final refusal.

Also spent a good chunk of the weekend and at work yesterday afternoon getting coding environments set up to use something other than conda, a python environment tool that is now verboten at work.

--== ∞ ==--

Back to behind in email, including correspondence with your comments.

I'd declared email bankruptcy at the beginning of January. The past week i've started backlogging again.

This weekend i spent much time experimenting with ChatGPT, the Airtable AI, and a little bit with Gemini nee Bard because our org's Dear Leader is all in with AI and wants us to explore. Also, i think some closer management is all <3 AI. So, i should have some clue as professional defense. Anyhow, learned some useful things including that the new thinking models are better.  Spent much of my time trying to figure out how to use the models efficiently: when to do my own research, etc.

An example is Gemini asked to compare the free models of Gemini and ChatGPT. The usual model was very hedged speculation (interesting training there), the "reasoning model with apps" has access to current search and actually did searches to get current details.

I did ask ChatGPT to help me figure out how early payments on the mortgage would affect the end date. I can't tell if the counter intuitive results are because i made a mistake or if it did. I know talking to Christine about similar topics can be ... well, let me say i might not be the most clear in expressing my mental model of financial math.

Yard work happened, with massive pruning of fig tree and before/after photos that i should record where i took them from -- the nearest corner of the elderberry bed, the neared corner of the HVAC, the south end of the top step -- and then the photo from the south looking north at the tree doesn't have a good landmark.

Time blindness and infinite project optimism continues to frustrate. At least i have words for part of what is so frustrating.