Today is Rare Disease Day. I have a disease that is not particularly rare, but is considered so because it's underdiagnosed, misunderstood and some of the types are extremely rare.

If there were more funding for research and more training for doctors, perhaps we wouldn't be considered rare any more. 🦓

#RareDiseaseDay #RareDiseaseDay2024 #EhlersDanlosSyndrome #LeapYear #ShowYourStripes #ChronicIllness #ChronicPain

I'm cleaning out the refrigerator and it strikes me that this is one of the more rewarding household chores. Not because it's fun, it's definitely not that, but because the pay-off is excellent. It's so nice to open a freshly cleaned refrigerator and not see any more questionable jars of ?? at the back, pasta crumble bits in the drawer, and weird spill residues on the shelves. Nothing but glistening white and glass orderliness, and exactly what you need right where you want it to be. Ahhh. 🍵

Picard management tip: If you lose one crew member, mourn appropriately. If the whole ship explodes, don't worry; time travel will fix it.

Fun fact: I meant to post this two hours ago but I got distracted and ended up cleaning out my kitchen cupboard. #adhd

Apparently the BBC has been trying out Mastodon, and has just decided to extend their trial another 6 months. You can see which outlets are here, uhm, here: Some look a bit too quiet to have been doing any kind of a trial, although @BBCRadio4 seems to be posting regularly.

Living in Europe means learning to read “refuse all cookies” in several languages

How frequently do you use an RSS reader?

:boost_ok: Please boost for more representative data.

Smoke alarms work by making sure you can’t die in a fire because you already died of a heart attack when they went off 😖

I'm leaving Substack, because of their failure to turf many white supremacist, Fascist, and pro-Nazi sites.

I'm a supporter of freedom of expression. (I dig deeper into the issues in the post below.) But I can also freely choose to leave a publisher—and Substack is a publisher—that profits from expressions of hatred.

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Remember how my previous employer denied my WFH request so that I could flee the state of Ohio to take care of my trans kid while still working for a company I loved?

I just heard they did it to someone else today.

When you insist people come in to an office a few days a week because you want a "hybrid culture" not a "remote culture" and then tell them to just fuck off when all they want to do is get their kid somewhere safe that makes you an absolutely shitty person.

I'm done hiding who it was.

The company is
#OverDrive, based in Cleveland. They make ebook lending software for your local library called #Libby. They say they care about their LGBTQIA+ employees and families but that is clearly a lie.

Ohio lawmakers are turning my home state into absolute garbage and companies like this one are playing along.

Tell your local library to

#Trans #TransRights #Ebooks #Libraries #Bookstodon

Hi there, folks! We have had a pretty tough week here in Norway. The Norwegian parliament approved deep sea mining, and we lost the first round of a lawsuit against fjord dumping. Hard times. We are looking to connect with marine ecologists, marine biologists, and other ocean scientists that are willing to stand and be counted in this. Please contact us, or wave in some way at us. We must protect the depths of the ocean. #deepseamining #scientistrebellion #Norway #norsktut

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