Made some bean dip for my husband and daughter (one kid fetched all tools and ingredients, different kid put everything away/in the sink). Wore me out more than I expected but it’s nap time anyways.

If you haven’t yet had a look at this article featuring symptomatology five arts by @liapas.bsky.social, you should. Gorgeous, unique art bringing awareness to several chronic illnesses. www.interaliamag.org/audiovisual/...

annoyed about the shitty "patient education" I received when I was initially diagnosed with Fatty Liver Disease so rather than seething, I'm going to share some of the info I've gotten from reading scientific articles #NEISvoid #MAFLD

✨ Gentle reminder: drink some water. If a full glass is too much, take 3 sips. 💧 #FaerieGodmother

Stop Meeting Students Where They Are What I learned when I finally started assigning the hard reading again. www.theatlantic.com/ideas/2026/0... | @theatlantic.com

Good news - my legs are reliably obeying walking commands again

A fun fact about my chronic illness is that the average person with ME/CFS scores lower on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and cancer.

One of my kids’ kindles crapped out. Dead. We have six kindles - five paperwhites and this one (I bought the wrong model by accident, a few years ago). This is the only device that’s died or otherwise given us trouble. So they’re reliable. But expensive.

what if standardized curriculum is more damaging than it is protective

Braided two thin braids in my daughter’s hair, standing up. (Why? I dunno. Forgot I have #POTS?) hr 125, near passing out. Got flat on the floor. Hr returned to normal, finished hair sitting on the floor (hr 90 - manageable). It’s been an hr and my arms and legs are dead weight and I feel 👎

This 👇

After the lemonade I cleaned that section of counter. Just water and paper towels. But like, moved the toaster and mixer and banana bowl. And let’s just say the kid who “cleans the counters” every night after dinner needs lessons. 😭 This home needs its mama back.

Helped my kid make fresh lemonade! Been on the agenda for like five days and finally felt up to it. She did great!

I tried to give blood yesterday but I failed the initial iron test, and when they wanted to do a further test they couldn't find a vein. They even sent the 'vein whisperer' in, but several nurses later and one said 'some people just aren't cut out for it'. So I'm resharing this for #VSS365 #Blood

So my kids just saw an Italian Olympian on tv and said, “that guy looks like grandpa!” (my dad is 100% of Italian descent)

Having my kid vacuum in the hopes it helps the MCAS

PLRC member Dr. Copeland has launched a research study on rest, energy, & #MECFS — open to people with ME/CFS & healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS. More info: restandmecfs.com

Ok. I have managed to obtain a regular of ivabradine by the same manufacturer I had previously. Still think Ozempic may be causing issues but I think I need to switch back the ivabradine first and see how the next Ozempic injection goes to see what’s going on. Which will further delay the next step

Instasneeze when I opened the front door to accept a package. Maybe this postnatal drip is mast cells reacting to pollen (stuff blooms all year here but February is when the grass turns temporarily green and the almond orchards bloom - it’s gets VERY POLLENY)

It’s amazing how often simply writing my kid’s math problem on a piece of paper instead of the computer screen causes them to all of a sudden understand what to do

Small press books!

Telehealth flexibilities for Medicare are extended until Dec. 31, 2027. As many of you were able to express to elected officials, telemedicine is a crucial service for our community. We will continue to advocate to make telehealth expansions PERMANENT! www.meaction.net/post/more-gr...

FREE 10-week Pediatric Long COVID training! For healthcare professionals & educators. Tuesdays 12-1pm ET, March 3-May 5. Learn best practices for kids with persistent COVID symptoms. CE credits available. Register: discover.kennedykrieger.org/jfe/form/SV_... #PediatricLongCOVID

The internet tangents we find ourselves on when I read to my kiddo with adhd… all good! It’s great to explore her interests, answer her questions, learn new things. But it’s an experience. Definitely not just sitting and reading!

Book 31 of 2026 - Lessons in Chemistry by Bonnie Garmus. Took me a while to get used to the writing style, which I didn’t love, but I’d already been hooked on the story #BookSky #Chemistry #HistoricalFiction www.goodreads.com/book/show/24...

The state of my child’s poetry unit education in 9th grade honors English is hurting my heart. It might be better than she’s letting on bc details are sparse. But it doesn’t sound particularly promising. Gotta find us a good one to read. I’m thinking maybe The Weary Blues.

#pwme and #pwlc - tried hyperbaric oxygen /oxygen therapy at a specialist centre? Please could you fill in this questionnaire. Positive and negative experiences are all important to share. As always the survey can be saved and continued at another time. Thanks @physiosforme.bsky.social

Book 30 of 2026: Mort by Terry Pratchett. #Discworld no. 4, my first Pratchett. #ReadAloud with my teen, who is hooked! I enjoyed the story and the humor, I’ll gladly read more tho I’m kinda sorry to leave Mort behind. I think we’re doing Reaper Man next. #BookSky www.goodreads.com/book/show/59...

This is very important to a very small group of desperately ill people. So please help me reach them and RT. Survival Diet "Can I get IV feeds/fluid at home?" open.substack.com/pub/undercla... #IBD #LongCovid #ME #Diet (It might be a tough read, but I hope it helps)

This is next on my #Poetry TBR! #100SmallPress

I really enjoyed these books! Plus, #ChronicIllness rep! #BookSky

I should’ve known better than to hope there wouldn’t be classroom valentines exchanges next week. Bah. I think I’m down to just two of the kids tho…

Our pitch form: docs.google.com/forms/d/e/1F...

Washington Post is shuttering its book section, part of the ongoing war against literacy & knowledge. We at Current Affairs want to pick up the slack by expanding book reviews. Writers: pitch us anytime! And if you subscribe/donate we'll use the funding to commission book coverage.

The owl is out. It brings me strange comfort. (There’s another one, at least, in town. Sometimes I can hear them call and respond). My kid saw it out the window a couple of weeks ago, and my husband has seen it in our yard. A Great Horned Owl.

Soooo extra steroids day 3. Days 1 and 2 were much better MCAS-wise. Today is NOT. Burning skin, mega anxiety. So my conclusion is that ozempic (did my injection last night) is irritating the mast cells rather than calming them, which is what we were hoping for. Unfortunate bc weight gain

We are thrilled to announce a virtual book reading featuring @shalidaask.bsky.social, #MEAction’s own Creative Arts & Community Manager! Her memoir, That Girl’s in a Wheelchair, just launched yesterday! Join us online February 20th at 3 pm ET: www.meaction.net/event-detail... #Disability

The clock is ticking. The NIH now has 180 days to develop an implementation plan for the ME/CFS Research Roadmap. In 6 months, we SHOULD have a plan to implement the NIH’s roadmap for biomarkers, treatments & clinical trials. #MEAction partnered with #NotJustFatigue to secure this support. #NIH

I need to write a new bio for my website (and to use for other stuff) and I hate doing that.

Hi everyone, I wanted to share a research study I just launched on rest, energy, & ME/CFS, open to people with ME/CFS & medical or healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS. Visit restandmecfs.com for more.

Book 29 of 2026 - Follow This Blood to Find a Dead Thing by Charles K. Carter, from Fernwood Press. #Poetry for the #100SmallPress project - I LOVED this book! Had to hold myself back from reading cover to cover in one sitting #BookSky www.goodreads.com/book/show/24...

Anyone have any good SILENT fidgets to recommend that my kid could bring to class? We had some small squishy things but they popped; we’ll be getting a new non pop able squishy thing but she also wants “a fidget thing for moving my fingers around” — and made a wiggly finger motion at me

Annoying Libby kindle thing - sometimes I borrow a book, select “read with kindle,” and then I click the get book link on Amazon and…. Nothing happens. I get a blank page. THEN I can’t return the checkout OR read the book (usually happens with a graphic novel or picture book) so it just sits

“Blah,” said a voice from inside the house.

One of the weirdest things about CCI is that when my cervical spine gets misaligned ;pretty much daily) I CANNOT straighten it. It does not go. I have to do (or have my spouse do) manual traction before it’ll move properly again. Ex - I sat in an Adirondack chair briefly yesterday. Could not rest

Indie publishers, I beg you to post high-res book covers and author photos alongside your book links. If you really want to be fancy, add in a downloadable PR sheet. SELL YOUR BOOKS, MY LOVES. That includes giving reviewers and journalists the PR materials they need without having to email you!

I know lots of people don't use Goodreads but I'm still on there. I added Sumitra's book @pleomorphic2.bsky.social but couldn't get the cover to load up. Anyway enough of that - I Ioved this novella-in-flash www.goodreads.com/review/show/...

Petty gripe - I don’t like when books I’m reading aren’t on Goodreads. That’s how I track my reading!

Ruth Ann Crystal:an important study that confirms what we clinicians have been seeing in our ME/CFS and Long Covid pts. "patients with Long COVID exhibit significantly disrupted salivary cortisol rhythms, indicating a fundamental breakdown in the body’s stress response and internal biological clock