Our family has lots of squirds & silly names for things. I tried to be sure our kids knew the actual names for things as they grew up. Sooo, I just found out our 28yr old son has been using “apple flops” for apple turnovers & didn’t know why it got him odd looks 🫣 Whoops, missed one! #parenting

A good example (& 1 of many I could’ve chosen from his channel) of what I meant when I posted about people who are using what’s in their toolbox to do something. I couldn’t do what Dr. Crawford does & sincerely appreciate the way he uses his education & platform so I joined his patreon.

Nothing like waking up to 3 missed calls from my dr’s office, 2 from the pharmacy, 5 MyChart msgs, & 2 texts. Like y’all, I appreciate that you’re finally fixing my Rx that you screwed up, but how the hell did I become the authority you both had to consult for what my dosage should be? 🤦 #neisvoid

I get on food things where I eat the same thing the same way for the same meal for months/years. Our grown sons do the grocery shopping. These two facts lead to our sons spending 20mins in the produce section looking for Grapenuts…

At some point I’m going to write out the philosophy I’ve come to about living w/a debilitating illness made worse by emotional expense & ppl trying to guilt me into reading or engaging w/the latest horror & outrage. For now, I’ll just say: Rage isn’t righteous. I already do what I can, 1/3

Sometimes titrating up on the GLP-1 med I’m taking is rough. I’m taking it for long covid so my doses are weird & go up in slow baby steps. Still, every once in a while I hit a level that’s mostly side effects. So far it’s still worth it, but I hate the occasional feel-even-worse-for-a-few-days bit

Later the same morning in Feb 2018 at the Fellsfjara beach at Jökulsárlón #Iceland.

@kristinwrites.bsky.social Your book lists have inspired me to listen to more than Great Courses lectures on things that are interesting but unemotional. This was recommended by my stepdad (one of my very favorite ppl) before I got super sick, & so far so good. www.amazon.com/Goodbye-Rive...

Hey yo, update your notepad++ immediately if you haven't done so.

I’m in a me/cfs PEM crash & I’m determined to bathe (with help, I’m not that crazy.) For my healthy friends: this is like going all in on a pair of 9s, being lvl 1 & trying to hit a DC20, or camping in the Smoky Mountains & using a backpack full of beef jerky as a pillow.

"It's impossible to say, when we compare all sons of men, which one is least cowardly-- there's many a bold man who's never bloodied a sword in another man's chest." (Fáfnismál, stanza 24, from my translation of the Old Norse Poetic Edda boulderbookstore.net/signed-jacks... )

Long covid & me/cfs are both so weird, even glacially slow improvement seems to have downsides. I feel like the disparity between good & bad days is widening. Which would be encouraging if it was just the good side moving from the mean, but it’s not. Today is not a good day. #neisvoid

In weirdly good news, I got a 2nd official #me/cfs diagnosis from a doc with multiple specialties at a major teaching hospital. I’m going to print it out so I can ball it up & throw it at drs who give me that patented skeptical look. …it’s tempting to wrap it around a rock for some of ‘em

Took so many pictures of this view - the sun even came out briefly during that blizzardy trip. Hellnar, #Iceland, Jan 2024

Time flies—and our language reflects that. If you also felt like this month lasted forever, it’s because you didn’t enjoy it. If you had enjoyed it, it would’ve felt short—or “merry,” in the original sense of that word, from the same root as e.g. Ukrainian бо́рзий “quick” & Sanskrit múhur “suddenly.”

www.etsy.com/shop/Chronic... or www.redbubble.com/people/Chron...

Nothing like winding down in bed & suddenly hearing a huge explosion followed by a sound like a semi idling next to my bedroom windows! Turned out the folk across the street had a huge fire kick off in their backyard & it was probably a propane explosion. I think they’re all okay, but holy hell!

I particularly love the composition of these. The sense of quiet & isolation are intimately familiar. Which for me, today, isn’t a sad thing. There’s a warmth & validation in that familiarity, a sense of found beauty in the imposed stillness. #pwme #pwlc

I don’t wanna need to look up what suddenly stopping LDN after being on it for yrs does, but it’s looking like my choices are that or go in blind. I’m one of the lucky ppl, my spouse has been on top of this for 3wks. The pharmacy & my dr’s office screwed up. It shouldn’t be this hard. #neisvoid

I had an e-appt w/the head dr at the long covid clinic I’m in this morning. For days I’ve been doing the anxiety-before-seeing-a-dr thing, now that it’s over & went great, I’m sinking into what’ll probably be a crash. I really want to slap every dr & nurse that helped build that anxiety. #neisvoid

We had several bits/slabs of ice slide off of the roof this morning just outside of my bedroom windows. There was one that actually shook the windows when it hit, I think the one my son is holding might be the culprit - but there are so many to choose from!

In my experience, this is one of the most impactful & important aspects of “getting better” & it’s rare to see anyone even acknowledge it. If every medical interaction induces a panic response which can cause PEM & pwME need medical help to get better the infinite negative feedback loop is obvious.

We’re dog sitting our son’s St. Bernard, Mouse, & she’s a hoot! She genuinely tattles on the other animals, grumbles like a drunk old sailor when she can’t have the bed she wants, & is terribly demure when she eats. They live w/us so I knew some of this but I’m not her human so I’m not her focus.

This is what it looked like from our front porch just before it started sleeting like a thunderstorm last night (it was 5°f w/the wind chill). That’s all ice, essentially everything’s covered in dippin’ dots that had become one huge sheet of dippin’ dots by this morning. Why this is a thing ⬇️

The downpour of sleet & freezing rain hitting our metal roof sounds weirdly close to a relaxing wood fire in a fireplace. Our neighbors probably think we’re (even more) nuts, it’s 11f (-11c) out & we keep opening the windows a smidge. We definitely live in the wrong biome!

Last night I got to deal the 1 person in my orbit who states flagrant medical nonsense as fact. They won’t look anything up, & I ended up watching as they made dangerously bad decisions while ignoring my dwindling red flag waving. 🤷 Good luck, I guess!

This is brilliant. Teaching people to engage with a relevant issues in a collaborative, critical way while ensuring they own the outcome of their choices is so valuable. Long thread, absolutely worth reading.

It’s my 2nd halfway decent day in a row, so naturally when I walked into our foyer & saw it needed to be dusted I thought “oh, I’ll just go grab the…” Thankfully, my brain kicked in & was all “no no no, bitch, you’re sick. Sit your ass back down.” The duality of man …w/chronic illnesses #neisvoid

Too real

Our eldest son is flying out to visit friends tomorrow morning. When we gifted him the tickets for his bday we didn’t realize he’d be flying out of Texas to Southern California the day before a winter storm. The liberal dad jokes write themselves.

Complicated vibes around this for me. My spouse sees me on my worst days, &, rarely, so do my sons - the guilt around exposing them to something I can’t control is difficult to sort through. I’m sure I’m not the only #pwme or #pwlc to wrestle w/this conundrum, which is comforting & sucks all at once

Texas weather: Please keep your arms & legs inside the ride at all times…

Hi there, do you know a recent ICE recruit who has no business being in the organization? Please reach out to me at [email protected] or on Signal at laura.113 Internal fact check will have to confirm your story, but we will keep you completely anonymous in any reporting

A few weeks ago I got a MyChart msg canceling my appt in March w/the main dr at the long covid clinic. The next day I got a msg saying I was on a waitlist for an appt. Yesterday I got one saying the appt is in 8 days, today’s says my preauthorization is expired… #NEISvoid roller coaster from hell

Trump has been in office for one year. We at @nature.com did a deep dive looking at the administration's disruption of science in numbers. Take a look—the numbers are staggering. By me, @dangaristo.bsky.social, Jeff Tollefson, @kimay.bsky.social, & help from @noamross.net @scott-delaney.bsky.social

Anecdotally I am hearing from a lot of people that Trump supporters they know have gotten real quiet or outright admitted they made a mistake. Despite very loud online assholes, a lot of people did NOT vote for what's happening right now

I was excited to turn 50, it felt like a big achievement. I was kinda baffled by ppl worrying about how I felt. & yet Today my amazing, brilliant, talented, strong, compassionate, brave, creative eldest kid is turning 30 & my dumb brain is all “wow, your kid is 30, you’re sooo ooold.” wtf, brain?

Last night got dicey. Blacked out for several mins, had difficulty breathing, & was decidedly not okay after I came to. No idea what caused it. Normal ppl would probably go to the ER, or a witness would call 911, but I have me/cfs & long covid so none us us even thought to do that. Wear a 🤬 mask.

I should be able to claim each chronic illness as a dependent 😩