Chosen son went to visit his maga biomom today. I’m catching bits of him vent w/one of our other sons & it’s just 💔. He wants a relationship w/her so badly & he wants her to have the values he thought she had - problem is I know she never had those values & I have no idea if I should say anything.

Like most #pwME & #pwLC it’s not good for my health when I get angry. Emotional energy is expensive. But OMFG I am so over ppl who aren’t sick using Long Covid to castigate the political left. Yeah, asshole, there are huge issues but they aren’t actively trying to kill ppl so maybe shut the fuck up.

I’ll add - it’s also not a punchline, insult, or slur.

A 2020 Covid sign that still cracks me up

Absolutely mad waves out today (and the wind is quite fierce 😬). Vík beach, #Iceland

The Hoh Rainforest, Olympic Natl Park, Washington

Multnomah Falls, Oregon

Boom! A good deal of my time spent on the beach at Jökulsárlón is trying to capture waves hitting icebergs, without the iceberg moving (and being blurred). Occasionally it all comes together :) #Iceland

Finally home from the long covid clinic adventure! Unsurprisingly, I’m exhausted. Got my blood test results, 98% normal 2% wtf - which has been the ratio for a while, though what’s out of whack is a moving target. So, ya know, that’s fun. Being chronically ill is such a pain in the ass #neisvoid

Driving home from Houston & naturally had to stop at Buc-ee’s. As always they have the cleanest, most accessible bathroom ever. One lady came out of a stall, inadvertently coughed in my face, looked at my mask then backed away apologizing & mumbling about AQI (which is bad today). Ppl are confusing.

Woke up feeling not too bad, got dressed for the drive home & even organized a few easy things. Then I sneezed & apparently I’m just going to die now. life with #mecfs

These are some of the most beautiful patterns in nature that I think I've ever seen! #Iceland #DronePhotography #DJIMavic3Pro

I’m trying to decide how I feel about having to take off my #mask for today’s testing. 1st test was in a closed room w/a good air filter & I had to breathe into a tube, so no 😷 makes sense. 2nd test was walking a set distance in a back hall of the hospital w/unmasked employees walking by… #pwlc

I’ve survived my first apts & tests at the long covid clinic! My respiratory tests look good at first glance. The dr I was working w/said it was probably b/c I have voice training & was singing before I got sick so I was in better shape to start with. Good test results are always weirdly bittersweet

This is my 1st trip since I got long covid where I didn’t end the day in my own bed, & it’s been a learning experience. e.g. I now know my body’s temp regulation issues are way harder to deal with away from home, & that the sound of a busy hotel near several hospitals don’t bother me. Home tomorrow

I’m comfy & tired & everything hurts & don’t wanna have to change out of my pjs, brush my teeth, ride in a car, or go do walking & breathing testing all afternoon 😭 Can’t they just like take the data off of my wearables & make some educated guesses? Guess I’ll go contribute to science or whatever

The day has improved! Stokksnes & Vestrahorn #rainbow #Iceland #iPhone15Pro (Warning: it’s a wee bit noisy!)

Good morning, Bluesky! A welcome sight after a couple of stormy days and nights. Sinclair Inlet and Bainbridge Island, Washington

I’m thinking about this an unhealthy amount lately. Our eldest kid & their partner are flying in next week, my husband is flying out for work a few days later, & they all have to fly home again. It should be the safest way to travel, but man they’re really trying to undermine that.

Just layin’ in my hotel room quietly cheering for the mom who just ran the very loud 20-somethings out of the pool by just letting her kids be kids. I can hear some of the conversation out there, & “mom, what’s a body count & why’s he so mad about her’s?” seems to have been the end 😆

Not to brag or anything, but I didn’t vote for this.

🌍 Free self-paced learning! #EmergeAustralia & #BatemanHorneCenter have launched modules for #MECFS, #longCOVID & energy-limiting conditions. 🌿 Practical tools for #pacing, #PEM, orthostatic intolerance and more. Start here: zurl.co/LLwvF

If you have long covid and a doctor recommends graded exercise, exit that office and warn everyone else. These doctors are effing dangerous!!

Major upside to being in Houston & having to eat out: Japanese food! When I lived here as a kid I was spoiled by the Japanese women at the buddhist cultural center we went to. It almost feels like it would be disrespectful not to get the foods from that part of my childhood since we’re here.

Left the hotel & caught the shuttle at 12p for a less than 5min drive to the hospital for my 1pm apt at the #longcovid clinic. LC clinic gave us the wrong address, got an Uber, made it to the right waiting room at 12:50. Didn’t see the dr until 3:15, & now we’re waiting for the shuttle back. /1

Saw some northern lights in the early hours of yesterday morning over Vestrahorn. Not ideal to plan a trip around full moon, but it does light up the landscape 🤦‍♀️ #NorthernLights #AuroraBorealis #Iceland

Sitting in the huge waiting area for my first in person appointment at the Long Covid clinic (getting here is a whole other post) & not only is no one wearing a mask (except spouse & I) there are 2 people hacking up a lung. I’m losing hope for society rapidly.

Answer: Nope, they fucking don’t The only masked people I’ve seen so far are 2 women who work in housekeeping at the hotel we’re staying in.

I don’t normally do anything but exist & be sarcastic on here on 1 days. Today I have to meet a new dr, so I’m dressed like a person, brushed my teeth, & even did something involving a spray w/my hair Tomorrow is the physical testing, next day is a 4hr drive home Betting for crash time is now open!

Yesterday: wow I did really well on that long drive, had a very relaxed evening, & now I’m going to bed earlier than usual - this is all boding well for the dr appointments tomorrow! This morning : Oh. Oh shit. #visibleapp #mecfs #longcovid

Ahhh, I just discovered the big downside of the private porch that goes out to the pool that’s attached to our hotel room - drunk young people are loud & like water regardless of how cold out it is

When I was a wee gnome (in the 90s) I lived w/my dad in Houston. He was bigger than life in the way all disturbingly good sales ppl are. His favorite flex was going to a specific fancy hotel. I never went, nor wanted to. Wanna guess which hotel we ended up in so I can see Drs in Houston? Life’s wild

I have survived a 4hr car ride, checking into a hotel, & navigating changing our reservation. Out of all of that it was trying to think about the logistics around dinner that made me spike a fever, have trouble breathing, & need to faceplant into the bed. Adventures with #ME/cfs & #MCAS

@janetrass.bsky.social this is adorable & you should show it to your other half 🥰

I really, really don’t like packing the day of - but I’m sick & everything has to be on other people’s schedules & fit their agendas It’s very difficult!

When Andrew Cuomo loses today, it’ll show that it doesn’t matter how much money and propaganda you throw at an election—the people will always overcome.

I’m increasingly morbidly curious to see if the staff at the Baylor College of Medicine’s Post Covid (aka #longcovid) Clinic will be wearing masks. I was told by a patient at MD Anderson Cancer Center, which is down the street from BCM, that they’ve made #masking optional. the wtf is real

The election news is definitely helping 💙💙

Every now & again I really wish I could have a strong drink. I can’t ‘cause I like that my meds work & have no desire to screw with that, but every now & again I just have One Of Those Days

In today’s episode of Healthcare isn’t for Sick People: I tried to do the digital checkin for the long covid clinic only to find they wanted A LOT of $ first. Spouse spent 2hrs on the phone w/various ppl at different places. We won’t know if it’s fixed until tomorrow. We leave to go there tomorrow.

When I arrived at Jökulsárlón on Sunday afternoon it was covered in fog - never seen it like that before (plenty of misty rain before, but not sea fog). The icebergs looked very ethereal when it cleared enough to see them. #Iceland

If nothing else, the last nine months should have made it clear that elections matter. But what’s remarkable about America is that we have the power, as citizens, to change this country by voting. Go to IWillVote.com.

Whelp yesterday sucked (& got kinda scary, tbh) part of the issue was my heart rate was way low. According to the hour I’ve been awake so far, today is also going to suck but because my HR is too high & is going full bore every time I move. Don’t get Long Covid, kids! #neisvoid

Love a good close-up of the surface of an iceberg. The patterns always mess with my eyes (the scallops are concave but look convex). Vestri-Fellsfjara, Jökulsárlón #Iceland

Another iceberg shot before I head out to the beach (a different one 😊). Vestri-Fellsfjara, Jökulsárlón #Iceland

Reflections of some enormous icebergs in the Jökulsárlón glacial lagoon today. #Iceland #CanonR6II