March 1, 2024

Good Things Friday (262) and Link Love

Small happy moments this weekend: I made a huge effort all week to clear off my work so I could stop work at a reasonable hour on Friday, and it finally happened! (the past 4 week’s efforts ended in disappointment)

PiC took the kids earlier than usual and gave me two hours to myself. My brain wanted to tackle the 6 of the 7 bags of clothes that have been sitting in the corners, demanding my time. They need to be handed down, donated, or were just handed down and needed to be put away. Everything was sorted into hand down bags and donation boxes and dresser drawers. That felt GOOD.

Sera and I went for a walk on Saturday morning, it was sunny, warm, nary a cloud in sight. Naturally that meant she didn’t want to walk. We came back home for what she really wanted: giant rolls on the grass in the backyard and sunbathing. I got some excellent pictures of a happy dog. 😍

Helping folks

My friend Zara Bain runs an audio transcription business that hires disabled people. I really believe in her business model and they need a bit of help to get through a tough time. I’ve donated and shared on Bluesky, perhaps you might be able to lend a hand too?: “Disabled people face countless barriers to employment. We’ve worked relentlessly since 2017 to change this. Without your help, we won’t survive. Please donate #SaveAAT#DisabilityJustice #Disabled”

Tinu is an activist for Black women and disabled people who has fought back cancer multiple times, while living with asthma, was hospitalized with COVID pneumonia and is facing another recurrence of cancer. I’ve supported her health expenses for quite a while now at the GoFundMe, and am now changing to a regular donation by Venmo to reduce the fees because she won’t just need help right now this month if she’s going to survive this bout with cancer. She also has a Cashapp. We recently lost @sassycrass to Long COVID, we can’t lose another person.

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February 26, 2024

Living in the time of pandemic: COVID-19 (195)

Year 4 of COVID in the Bay Area.

Year 4, Day 328: This day’s theme: It’s all a LOT.

Reading up on what Sera might have (probably has) and getting to this part has me wanting to yell cusses: “This is a life-threatening cascade of events and, in fact, a 20-80% mortality rate (depending on the study) has been reported with this disease.” I can’t. She’s sleeping right over there and yelling or cussing would wake her. But I want to.

That’s a huge range but more literature points to a worse prognosis generally than a good one. We have to increase her steroids again and add a second medication to try and stabilize her, and that’s terribly depressing.

My therapist asked if I’m feeling supported by PiC and friends through this and I didn’t understand the words. Support for what? I’m not the one who’s sick. (Well, I am but I have a cough, not something hemolysing my RBC.) All I could do for the past month was take care of her and hope like hell that she’s going to respond to the treatment. I’ve been holding my breath this whole time and probably repressing my feelings with caretaking. Because after that first cry when we discussed all the possible options for why she was jaundiced and anemic, all bad options, I felt the loss of Seamus crashing down on me again. I can’t DO that again. Not so soon.
***** (more…)

February 19, 2024

Living in the time of pandemic: COVID-19 (194)

Year 4 of COVID in the Bay Area.

Year 4, Day 321: (TMI for those of you who don’t track your pets’ every movement, literally.)

Sera and I had the weirdest morning walk that we’ve ever had. She was wearing her “on a mission (to poop, probably)” face at her “on a mission (to poop, probably)” trotting pace. But she’d already pooped, twice, even! She even did the weird boy-dog attempt to squeeze out a few more drops of pee. She’s never done that before, nor has she basically decided that she was going to go for a much longer walk and I could come along if I wanted but she was GOING. I had to coax her to turn back around to go home. She trotted most of the way back, too.

*****

Every Monday takes a bigger bite out of me than the last. I was grinding my teeth by 10 am facing down the mountain of nonsense work added to my usual overflowing plate. That doesn’t usually happen until I’m asleep. This isn’t a good development.

A friend reminded me that I’m only one person. Then I reminded me I am terrible at pacing myself when faced with a giant list of things to do, maybe work on that by not trying to vanquish everything before noon? I hated my suggestion but reality bites.

I was also having a sensory thing. My fingernails were apparently two millimeters too long, and the way they landed on the keys irritated me beyond all reason. I clipped my nails and that helped a little.

*****

Given my tizzy last week, this was ironic: Sitting down to dinner, Smol Acrobat requested “a call”. A call with whom? “A call wif Wee’s school!” They wanted to listen to a PTA meeting! πŸ€¦πŸ»β€β™€οΈπŸ˜…

Year 4, Day 322: 3 hours of sleep last night thanks to painsomnia. There’s something really insulting about knowing you’re in too much pain to sleep, but also knowing that for every hour you can’t fall asleep, that sleep deprivation will drive the pain higher.

Plus 3 hours of my day taking Sera 🐢 to her consult. Utter and complete wipeout sort of day. I wanted a nap when we got home. I got another hour to work before school pickup and an hour to work before after school activity. I’m so tired I could cry but the pain has ridden with me all day so that’s not a good prospect for a good night of sleep.

JB leapt to be extra helpful when they understood just how depleted I was after we picked up fast food for dinner. They helped prep the rice and my meds and set the table and played with Smol Acrobat as soon as they came home, keeping their spirits up so they didn’t dissolve into the usual post-homecoming sulks because they want to play but it’s dinner time. (Fried chicken on the table won the little one over, truth be told.) They and PiC did their best to pull the nighttime duties from me so I could try to rest. For my part I tried not to feel guilty for needing accommodations / help, and worked on breaking the pain cycle. My bones have increasingly felt like lava for three days, usually it kicks in at night but it lingered all day today, so I used heat and massage gun and heat again. When that didn’t shake it, I turned to my last resort of pain meds cocktail.

Year 4, Day 323: I can’t recall if I shared this article link with y’all but it has been on my mind since I first read it: A discovery in the muscles of long COVID patients may explain exercise troubles. My fatigue has always puzzled me. I could feel the differing levels so clearly and it always bothered me that I could walk up a hill one day and the next day, be winded halfway up the hill. And the next day, even more winded. It made me feel like I was deconditioned.

I’ve always used the analogy that my tank is never full. Sleep and rest never bring my tank back up to full, they just pull the indicator back up to slightly above the red empty line. It’s clear my body gets depleted over and over at a faster rate than others but what else can you do to refuel it if food and sleep hardly do anything?

These bits hit home:

Among the most striking findings were clear signs that the cellular power plants, the mitochondria, are compromised and the tissue starved for energy.

In his own research, Systrom has found evidence of abnormal oxygen uptake by the skeletal muscles during peak exercise in both long COVID and ME/CFS patients, which indicates there’s a problem with oxygen delivery to the mitochondria.

Most nights I’ve been feeling unbearably tired, dragging myself through the last hours of the evening to collapse into bed. Most mornings I’d roll out of bed because sitting up was too hard, I felt too heavy and exhausted, and I was existing solely through sheer willpower despite my desperation to just quit. Some of that was the weight of some incredibly fraught family conflicts. Finally facing up to them in therapy and out of therapy literally took some of that weight off my body. I could breathe more freely. But I was still, am still, fatigued from things that wouldn’t have fazed old me ten times over. This is now a largely imaginary memory of old me, I guess, of a young me with youth and vitality?

I’ve experimented with increasing my dose of coQ10, one of the supplements the ME/CFS people advised me to add for a few weeks now. I probably should have documented this a little better than just blogging about it but it does seem like the weighty feeling of fatigue overall is a touch lower these days even despite the higher than ever stress levels and feeling like I’m juggling too many balls for any one person at work.

Year 4, Day 324: Enervating day. Ran JB to school, then ran Sera to the vet for bloodwork (1 hour), then worked briefly before diving into 2 back to back conference calls. I just wanted to curl up and nap or cry, or both, when I got off the calls. They weren’t difficult calls, it’s just the amount of energy it takes these days to TALK to people and keep up that professional front takes more than I’ve got in the tank.

Because I’m completely pandering to Sera’s demands these days, I moved my work into the bedroom and worked from bed after hours so that she wouldn’t have to come stare at me in the office, asking me to go to bed, late at night. Somehow 9 pm turned into 10 pm and then turned into 11 pm before I called it quits but it meant that there was a little bit less pressure when things happened to cut into my working hours. As they keep doing.

*****

This year JB has a whole week off next week, instead of two long weekends, and they were going to do a weekend trip to visit family except everyone they meant to visit came down with COVID. We’re scrambling to figure out how to schedule next week, now, but I’m so relieved we heard about it before they left.

*****

PiC gleaned info from a parent volunteer thing he attended: the pair of parents in JB’s year who have been the most prominently active in the PTA until this year were actively recruited for some committee for the fourth grade year and they bowed out saying this is their last year, they’re burned out. I guess that answers one of my questions!

Year 4, Day 325: JB had a fun field trip today but sadness strikes (elsewhere) again. After only 4 hours at daycare, I got a call that Smol Acrobat wasn’t feeling well, had a slight fever, and needed to go home. I dashed out to pick them up and after a long wait while they napped, we made our slow and sad way home. They settled in to read a book with PiC and got a second much needed nap while I worked.

Then found out that a person I respect, though I only knew her online, Fiqah, had died. She’s been ill a long time from Long COVID and suffered greatly in her last months, having to crowdfund for housing and medical care. I’ve known her for… must be over a year?

She was a friend of a friend, when I started to contribute to her crowdfunding regularly for care and other needs, and I developed my own relationship with her directly over time. I never got to know her at her best, only in the worst year and change of her life when she was ill, terminally so, and suffering greatly from the effects of Long COVID. Yet even in her last days, she was still smart, kind, empathetic, and rightfully furious at a world that’s failing all of us. She was a lovely human with incisive wit and intellect, and she deserved so much better. She wished to die housed, and she was when she went, and I’m glad for her but it’s such a basic thing that a person shouldn’t have to HOPE or wish for.

I hate how this world keeps failing good people stuck in the margins while the evil people keep thriving. I hate that we have to continually do the calculus of how many people we can help, and how much, and how often, without endangering our own financial health because we have kids and who has a safety net at the other end of things if not of our own making? I had to decide which of several mutual aid needs we could assist with every month and how much, while still paying our bills. It’s a demoralizing calculation. How do we balance people’s very real needs today against our very real future needs that we have to assume is entirely our own burden to carry? Who knows if anyone will be able to help us when our time comes. More than ever, I feel bereft of community and feel/know we’re on our own when disaster or problems befall us. But these precious people are here, today, and deserve to live and thrive, too. It’s heartbreaking.

February 16, 2024

Good Things Friday (260) and Link Love

  1. I managed TWO, no, THREE short yardwork sessions this weekend. I pulled weeds for ten minutes Saturday morning. Smol Acrobat very sweetly asked for a weeding session later that afternoon, which I’d been promising them for days, so it was time to make good on my promise. The last one was for Smol Acrobat’s sake too, but mostly to divert them from the Lego trolley they wanted. However. Ten minutes of chopping hedges is not the same as ten minutes of pulling weeds. My hands were shaking terribly after whacking off the sticky-out bits all along the hedges and dumping them into compost. I needed an hour to recover from that one.
  2. I have come to like my Darn Tough wool socks so much that I don’t want to wear my cotton socks anymore. The first part is good. Not sure what I’m going to do about the second part since we try to keep things out of landfill as much as possible. They’re still in good shape but I think they’re too worn in to be handed down. Actually maybe I’ll set them aside for one of the kids to wear when their feet catch up. They like borrowing my stuff.

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February 14, 2024

My kids and notes: Year 9

Life with JB

We have a nine year old! πŸ‘€ JB got a small party this year.

We booked part of a pizza parlor early in the day so we were the only ones there. 9 kids (5 families) showed up of the 16 kids/8 families we invited. I was very worried about how much energy it’d take and how it’d go, especially because we were just coming off a rough week of illness, but it worked out really well in the end. It was small enough to be just manageable, with one family helping us with Smol Acrobat, and the other families occasionally assisting with stages of cleanup and kid management.

We splurged on the activity and the food, we saved on the cake (Costco: $25, first time we’ve ever had one of their famed sheet cakes) and the decor (Party City: $20). The place provided almost none of the assistance they had promised so I was orchestrating so most of the event unexpectedly. That kept me too busy to socialize but we did each catch up a little with each set of parents. JB was thrilled to see their friends and ran an illicit (temporary) tattoo parlor out of the bathroom for them. Of course they did. Smol Acrobat was briefly put out that they didn’t get one too, but they weren’t willing to wait with the older kid crowd and moved on quickly.

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February 12, 2024

Living in the time of pandemic: COVID-19 (193)

Year 4 of COVID in the Bay Area.

Year 4, Day 314: I’ll do a full write-up later. Our power is still out today, internet is still down, my phone’s data connectivity is next to nothing. The kids are sick, I have a sore throat and a huge workload, and we spent too much of the day navigating choked roads to get to a safe place where we could connect to the internet and charge the devices enough to get us through the day and night.

The county libraries were all open to the public for water, snacks, and charging.

I’ll tell you what, functioning by lamplight, with only power for the fridge and no other appliances, really narrows your focus on what you can do. No dishwasher, no vacuuming the mess tracked in from the storm, no toaster oven, no microwave, no hair dryers, no space heaters, no heating pad.

We still have running water and plumbing, and gas to heat food and the water for bathing, and I cannot tell you how thankful I was for that much. We are so not equipped for the loss of power, internet, gas AND running water.

Year 4, Day 315: POWER IS BACK. It’s weird to see the utterly still blue sky, with one enormous grey cloud hovering as if copy-pasted in place, after the stormy weekend with all the challenges and consequences. We get a one day reprieve, then it rains again tomorrow. I think that may be the end of the wet for a handful of days.

I may have overdone it trying to right the ship doing all the things this morning: 3 loads of laundry, ran the vacuum twice, ran the dishwasher, while trying to catch up on a couple hundred emails and projects.

With JB home sick another day, and trying to heft an unbelievable amount of work, I’ve been on edge and snappish. I decided JB won’t be going to their class this afternoon. They probably have the energy to and would be fine (masked as always) but I needed to take any one damn thing off my plate and that was my pick. It was a good call.

Smol Acrobat came home meowing sadly. They’re running a slight fever, appear flushed, and tell us “I’m not feew-wing well.” Their throat hurts and they’ve got that weird dry congestion that doesn’t result in a drippy nose, just leaves you feeling stuffed up with no relief. I had to spoonfeed them their dinner. I pulled out the remaining frozen half of the Japanese curry I cooked a while back for dinner. Thanks two weeks ago me!

We’re in for a rough night. Well, PiC is. He’s been fielding all the nights for a while. Even if he hadn’t, Smol Acrobat switched from wanting Mom cuddles and feeding at dinner to the quavery: “Daddy, can you take care of me?” and only wanting Daddy to give them their medicine and prepare them for bed.

Year 4, Day 316: JB hacking coughed their way through the night, Smol Acrobat sobbed and fussed through the night. I offered to take over at 2 am but PiC waved me off. In the end that was for the best, I needed that sleep pretty badly and Smol Acrobat had to stay home with us today with that fever. We traded off work time slots throughout the day.

They were surprisingly chipper, despite their very rough night, and managed a halfway decent nap midday. I was so tempted to lay down with them but I’d just get mad having to get back up again even if I napped. As a night ogre, the waking up transition at any time is unpleasant.

JB and I also had an appt at the orthodontist after school. They’re headed for braces in a few months. Sigh.

Texting with an old high school classmate who’s visiting our old teachers brought on the sads of a blobby amorphous feeling that I don’t belong anywhere in meatspace. I think this is about feeling very disconnected from the friend groups online and off. One of my closest daily friends has dropped out of contact for almost two years now, and I miss them deeply. I know it was for their own reasons, I respect that, I just miss them. (Separately, it makes me wonder if I’m just a bad friend because I’m the only one who was dropped. Maybe I’m just too much of whatever I am.) It’s gotten worse since Twitter went to pieces and my social web was destroyed. I have this space, some folks in the Discord and a bit of Bluesky, I peek into Instagram because I was forced to create one for the business. It feels scattered. That sense of wide connectedness is gone. Even though I still text with a handful of friends from the ‘nets, I feel out of sync with myself and with the world, emotionally.

I had to do a Murderbot and face the wall this evening for a minute when the feelings were too much. I’m in the middle of Network Effect right now and very much empathize with Murderbot. I hate feelings. πŸ˜”

Year 4, Day 317: Frost everywhere this morning! Aftermath cleanup continues. I’ve finished recharging all the lanterns and the Yeti. That just leaves the crank radio to charge. It can be charged by cranking of course, that’s the point of it, but why not save our arms if we can charge it ahead of time. So I finally get JB to school, load Smol Acrobat up for their ride with PiC, clean up a bit around the house and reheat my breakfast eggs. Sit down and really start to dig into emails and urgent morning work stuff. Take a bite of egg. Miss a text. See a call come in from PiC: they got a flat tire 3 miles away from daycare. ARGH. The full round trip rescue ate my morning. Who put this curse on us? It’s one thing after another this week. Relentless.

We had to skip JB’s afterschool class again because I could not handle losing another 2 hour chunk of my time today. It’s all management work today and I don’t fancy working until 11 pm again. (That was last night.) It wasn’t until dinnertime that I remembered my whole breakfast, lunch, and snack was a plate of scrambled eggs and half a box of Wheat Thins. Not ideal.

There were “this is where rain may fall again Thursday!” headlines that I waved off and YEP! IT WAS US. PiC and Smol Acrobat got caught out biking home. They were drenched.

Year 4, Day 318: Work work everywhere, as far as the eye can see. This was my first mostly uninterrupted workday all week. I was desperate for one but didn’t dare say it out loud for fear of triggering another spontaneous combustion of my day. I’m not at all recovered from the week but having gotten through the worst of the workload, I can finally say TGIF.

Also not great: PiC’s company is a multinational one so from their POV this isn’t (maybe) that big a deal but from ours it is: They just laid off a couple hundred people. Still no idea on how much of this will roll over to his department, and we wouldn’t know until it hit. He’s not high enough up to be privy to those conversations.

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