March 4, 2024

Living in the time of pandemic: COVID-19 (196)

Year 4 of COVID in the Bay Area.

Year 4, Day 335: Monday, we meet again.

PiC has been taking the brunt of the rougher parenting times: covering JB’s week off of school and all the overnights with Smol Acrobat who simply cannot get through any night without a fuss and a cry at least once if not three times a night so that I can get at least a few hours of sleep. I covered last night and the kid kept waking me every half hour with a startle and needing a cuddle before they could sleep again. I’m a zombie today. Or Mombie. They’ve been calling me Bombie for “Mom-Zombie” and I can’t argue.

The A LOT going on this week: Short school days all week for JB.
A parent teacher conference this week.
I’m still constantly monitoring Sera’s health and meds and meals and appetite. I’m constantly worrying over her enlarged abdomen, worrying that it’s her (confirmed) enlarged liver and the mass teaming up to make her sicker.
Work is feeling very hard right now. We discover more problems (fraud) every week and I have to create systemic ways to catch them. Pre-COVID, these would have been just about unthinkable, we’d catch a case once a year, maybe? Now, industry-wide, all bets are off. Hundreds of people are committing various forms of fraud utterly shamelessly. Totally depressing, frustrating and makes everything feel futile. Big changes are brewing as well, and that’s unsettling as all get out.

I’m having real trouble pulling on the memory of joy from the weekend. The garden isn’t stirring up contentment, petting Sera, I’m just full of worry for her. I’d like to just lose myself in a stack of books for a week.

Year 4, Day 336: The brain fog was thicker than pea soup today. I couldn’t even pingpong my way through it as usual (flip from one easy task to another for as long as my attention lasted). Brain was sludgy, kludgy, and sort of drippy. Information would leak a bit from one task over to another to another and none of them ever quite got done because drips and drops of brain isn’t enough. I tried to Angry Snack it off, that also didn’t work. Finally Sera and I went for an early walk to try to walk it off and then I opened all the windows for blasts of cold air. That helped just enough for the gears to move at a minimally acceptable rate. It really stinks when your brain goes incommunicado without permission.

Semi-related: I hate the ending of The Good Place. It’s SO well done and makes me so damn sad! Which is fitting for this week.

Unrelated to anything: I waded through a 98 page document AND sent off the engagement letter to the lawyer to thingie our will/trust/etc. All in the same night. They’ll be getting that done in about two weeks. It went a lot faster when I decided to delay the discussion of what else we’d want and just take care of these essentials now.

Year 4, Day 337: I am full of sadness. Also existential dread. Also anxiety? I’m not sure. It’s weird. On the face of it, we’re in a good place in life right now. The kids do drive us up one wall and down the next but they are fundamentally decent kids (SO FAR, my anxiety demands this caveat). They have friends. Well, friend singular, in Smol Acrobat’s case. We both earn a living wage in an incredibly expensive place so we can afford our moderate lifestyle, but we don’t earn enough that only one of us has to work or both of us could go part-time. We are decidedly medium on this point. We have some community. We say hi to several neighbors, we trade favors with one set. There are big shifts at work (the aforementioned horrible fraudy frauds) and I might last as long as a whole year before I completely lose my patience with the new landscape and have to make some hard decisions. I don’t see people going back to being MORE ethical by choice. That’s a big stressor.

The irrationality of feeling so sad when our fundamental needs of life are met might be the depression speaking. Or the grief. Losing two friends in two months is remarkably sad. I don’t know how to tease out the answer.

I’m trying to balance my sadness out, a little bit at a time. Keeping busy, always. Work is constant, so are kids, so are life things like eating and cleaning.

Organizing sometimes helps. I bought four new large bins from Office Depot (on sale for $34, minus $12 in Rewards, working out to about $7 a bin) to house the kids’ legion of Legos and trains. JB’s train set from their second birthday has real staying power. I asked for a couple spare tracks for Christmas, they’d lost a key piece of track and could no longer form an oval, and they received a box of hand me down spares. as I’d requested but fifteen times more than I asked for!

Distraction thought exercises: what would be a life changing amount of money for me (an absurd amount) and how much would we need to have for me to feel comfortable handing out life changing amounts to people with much lower thresholds?

I’m taking it very literally. Life changing money, enough that I could stop worrying about money entirely for the next 40-50+ years, means so much money because a) baglady syndrome is persistent and b) healthcare.

I keep thinking, could we get to a place where $5000 or $10000 gifts, amounts that could significantly improve a person’s life when they’re experiencing precarity, would be possible for us to give? Without endangering our financial stability? I hope so. I think that’s more possible than the entire broken system getting fixed but that’s a really low bar.

Year 4, Day 338: Bit of good news: the car insurance people finally got their crap together and recalculated the premium for the car that we’ve garaged and just registered as non-operational. My first time ever doing that, by the way. I asked them to do this early January and someone dropped the ball so we got a bill for $400. After a few more emails, the premium is now $60. WHEW. Our insurance is now $1000 every 6 months, because of the new car, for the two cars in use. That’s hard enough to swallow. $400 for the non operational car? No sir no thank you!

Today being Leap Day totally erased the fact that it is also Spreadsheet day today in my mind. I’m glad someone mentioned it on Twitter. I still really like updating our monthly net worth, something about filling in numbers is soothing. We’re so close to a milestone number on the mortgage. Which still has an astounding balance on it, of course, so the milestone is more of a haha-siiiigh. A less good milestone, oh wow that vet appointments are adding up really fast. That’s a $4000 credit card bill I’m eyeballing. Sigh. She’s worth it, I just wish we had a better prognosis. Her poor body condition makes me sad and worried.

Year 4, Day 339: Status: the kind of tired where you get uncomfortably close to putting lotion on your toothbrush.

I had set appointments all through 2024 for massages to try and keep a promise to take better care of myself. My normal rule is never schedule more than one appointment per day, and my massage was scheduled for today, so that should have made for a reasonably good Friday. Naturally the universe cackled at me and pushed JB’s jaw expander out again. Today was the first appointment they had, so my work day was truncated even more. Woof. I had to race through my work to try and get enough work squared away that I wouldn’t have to work late into the night.

Sent some cash to a friend whose bank account is zero until next week because of medical treatments, they need groceries. Venmoed some cash to Tinu. Another friend is dealing with a hospital stay for their kid, I’m buying their dinner tomorrow when they get home. Fingers crossed they’re all able to go home tomorrow.

Spent some time paying bills and sort of balancing the cashflow for the month.

It’s been takeout for us every day this week. Well, takeout, then leftovers. Then takeout and then leftovers. It adds up so fast. But we’ve been running absolutely ragged and that’s before even thinking about cooking. I’m starting to feel like we need stock in Bon Chon Chicken and Super Duper Burger. We mostly buy from local restaurants but the chains get our business too. I’m laying on the floor typing this because I’m too tired to sit up. I’m also trying to sneak in a cuddle with Sera 🐶 who is also laying on the floor but I know she’s just tolerating me laying next to her. She’s not much of a cuddler of humans. She prefers to cuddle other dogs. We did remember that I’d frozen a batch of the meal I cooked last week, though. It freezes so well, I think I’m going to try to make a triple batch, all for freezing soon. I need a few more recipes like this: easy, comforting, goes down well.

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! 🤦🏻‍♀️😅

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.