acrylic, canvas 40*50 cm «Lighthouse of the Northern Sunset» 2025

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祝日 / Permanent Vacation
Claire Keane
RMH

Origami Around
styofa doing anything
Stranger Things
we're not kids anymore.
Aqua Utopia|海の底で記憶を紡ぐ
Misplaced Lens Cap
TVSTRANGERTHINGS
DEAR READER

pixel skylines

❣ Chile in a Photography ❣
Peter Solarz
I'd rather be in outer space 🛸
Cosmic Funnies
Sweet Seals For You, Always
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seen from Türkiye
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@caelophysis
acrylic, canvas 40*50 cm «Lighthouse of the Northern Sunset» 2025

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i think we should be talking about the semi-recent advancements in cystic fibrosis treatment like all the time every day. there hasn’t been a drug like this since AZT medications for HIV infection it is truly fucking miraculous and very important
basically: cystic fibrosis is a genetic disease which makes the mucous a person generates extra sticky. it used to kill people in infancy, then with advancements in medical tech it killed people in young childhood, and until very recently cystic fibrosis patients could expect to live until about thirty years old with consistent painful lung infections and complications.
in 2019 the FDA approved a drug called trikafta (which is really three drugs in one) for cystic fibrosis treatment. what it essentially does is patch up the malfunctioning proteins that cause the extra sticky mucus. trikafta is effective on about 90% of cystic fibrosis patients.
people who had spent their entire lives in and out of hospitals, on and off of ventilators, suffering from pneumonia and sometimes treated through painful procedures like intubation took this drug, got out of bed, coughed up an entire lifetimes worth of mucus out of their lungs over the course of a few hours, breathed clearly for perhaps the first time in their lives, and now go on to live well into their seventies.
like isn’t that insane. isn’t that amazing. doesn’t that give you hope for the future of medical advancements and treatment. fuck. i think about it all the time……
There’s a WHAT.
For WHAT.
It's been amazing!
My ward is the respiratory ward - CF is one of the things we specialize in.
Since this med came out we haven't had a SINGLE CF admission to the ward
There used to always be a CF patient spending a couple of months with us at a time
There's a man who is 23 years old who I was sure would not survive his next admission (aim saturations 85% is end stage lung disease)
There's a set of the local frequent flyers that we all know so well
Except
No we don't
On the CF specialist ward (with reasonable staff turnover)
Half the staff have probably never even seen a CF patient
They are going to live
For the people asking "well how do we know people are living that long if it's so new????" Here's a page from the CF foundation about life expectancy.
Additionally, it should be noted that metrics like life expectancy are in no way a guarantee of... Anything. There are significant outlier CF patients who are at an advanced age now despite the odds due to a variety of different factors, having lived the majority of their lives before the development of modulators.
But the fact remains that the odds are better now than they have ever ever been before, by leaps and bounds. It isn't cured, and many patients still need significant treatment in addition to Trikafta, but it is so much better than anyone could have dreamed of twenty years ago, and that is a triumph.
Yes! My sister has a serious form of cf and finally is living a more comfortable and active life. She was also part of many of the clinical trials leading to these breakthroughs due to the nature of her cf. It's been very exciting to see.
That's absolutely incredible. Don't get me wrong. It's miraculous from a clinical standpoint. But, uhh. Not to be a downer but I need people to see this so they stay angry and stay real about what medical breakthroughs actually mean for patients. When I call something "survival gatekeeping", this is what I mean:
That is per month with the most common coupon people are likely to use.
But don't worry, there's grants and patient assistance programs you can apply for. 🤞🫠 Most people in high income countries like the USA can get it "covered" through insurance for fewer thousands of dollars. Or even less if your insurance is good or the manufacturer likes how poor and/or on Medicaid you are! A good social worker will help you with the process, and make sure your yearly reapplications and PAs are done a little early so they have time to think about it before you run out. Jesus Christ.
NEVER look at something like this and navigate away feeling better about things without asking how much it costs and who can get it. NEVER. It isn't revolutionary until poor people can access it without a struggle.
artistsuniversum: “Kathin Marchenko is a textile artist and designer known for her expressive embroidery on delicate tulle fabric.
Using a "painting with thread" technique, she creates portraits, anatomical forms, and ethereal figures that seem to float within wooden hoops, blending craft with fine art.”
Artist: @kathrin_marchenko
#art #embroidery #artist #textileart
There is a kind of grief that comes with constantly having to decide whether something is worth the energy it will cost you.
I think a lot of disabled people carry that grief quietly.
in 2026 let’s start actually noticing and taking seriously the true scale and impact of jkrs transmisogyny and how she’s been funneling decades of royalties and ip owner cash directly into anti trans lobbying thats been making the uk hell while gradually worsening conditions elsewhere through impacting the zeitgeist

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Spirit training
THIS IS IMPORTANT!!!!
KOSA IS MOVING FORWARD IN THE HOUSE!
It's part of a package called the KIDS Act, filled with digital ID and age verification and censorship!
MAKE THOSE PHONES RING!! CALL YOUR HOUSE REPRESENTATIVES ALL WEEK
202-224-3121 i HIGHLY encourage everyone to read the bills in the KIDS Act, because you will be doing more than 95% of people who read and introduce these bills
All of the bad internet bills. One website.
It bothers me so much that the healthcare system relies so much on the patient's ability to advocate for themselves, organize their history, and be so persistent against every medical “professional” who says there’s nothing wrong/they can do. But so many struggle with fatigue, brain fog, and face such ingrained systemic barriers, that the people who need and deserve help and support can’t access it.
I saw something recently that resonated with me: “Access shouldn't depend on who has the energy to fight for it.” And I’ve never agreed with anything more.
I know this is meant to be funny but it actually makes such a good point about how ADHD and executive dysfunction can impact people in really major ways, including financially

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two colorful dinos! 🌈
little critters i drew for the Cuteasaur digital charity zine!
Something that I get chills about is the fact that the oldest story told made by the oldest civilization opens with "In those days, in those distant days, in those ancient nights."
This confirms that there is a civilization older than the Sumerians that we have yet to find
Some people get existential dread from this
Me? I think it's fucking awesome it shows just how much of this world we have yet to discover and that is just fascinating
@makaeru peer review cos this made me check when the Sumerians happened and I forget how recent history is for every other continent. 7000 - 8000 years ago just isn't that long when you're in Australia, and the amount of detailed history we have access to here is wonderful and should be recognised more internationally
Source (non Aboriginal)
And a quote I picked out from a longer interview with an Aboriginal local elder about the area where he touched on the history
Source (the rest of the interview is really interesting and all transcribed, have a look if you're curious)
This is part of my Ancient Civilizations class that I teach, which does a whole week about Australia and the Torres Strait Islands because I was sick of never seeing them represented in USAmerican history contexts. With the help of @micewithknives and @acearchaeologist I've learned so many incredible things about Australia's past and it's been incredibly rewarding to share them with students.
My favorite fact about Aboriginal oral history is the fact that we pretty recently discovered that the Aboriginal myth of the 7 Sisters, an origin story for the Pleiades star cluster, accurately reflects a point TEN THOUSAND YEARS AGO when two stars in the constellation got close enough together to no longer be distinguishable by the naked eye.
The story? 6 sisters running from something that took their 7th sister.
as a gilgar gunditj woman, i was not expecting to see my culture on my dash.
thank you for spreading our words and treating our culture with respect.
The Djaru/Jaru people of Western Australia have a creation story about Wolfe Creek Crater, describing a star that fell from the heavens and caused a massive explosion and a brilliant flash of light, accompanied by a massive dust cloud. The story says that people feared and avoided the area for a long time after the impact.
Which seems fairly plausible as something that originated from eyewitness accounts passed down from people who actually experienced the meteorite impact, right?
But here's the thing...
Scientists think the meteorite hit just under 120 000 years ago.
Aboriginal people supposedly arrived in Australia around 60 000 years ago.
But maybe one of those figures is wrong...
Turtle Quilt by Laurraine Yuyama
Tokyo Quilt Festival
The Estate's Secret The Earth's Champion
In light of recent events, I have begun submitting bug reports when I see mature content labels applied inappropriately to posts, especially if an appeal has been rejected.
Extremely good idea - how are you doing it? Through the contact us option?
Yeah it’s one of the options on the Contact Support form:
for what it's worth: after a few months of submitting help tickets as 'feedback' when i saw a post inappropriately flagged as mature, i tried following this suggestion instead. today i got my first-ever response from tumblr support on this issue, letting me know that a post i'd submitted a ticket before has had its mature content flag removed.
Hey it worked! Maybe if enough of us make a stink they’ll fix the fucking system.
This is legitimately brilliant. Bug burndown reports (the rate at which your software team can close bugs) is a major metric for most software houses.
It takes an extra step in our part, but this is part of what makes it effective. It's not one click, one reblog activism and it hits them where they care: their damn KPIs.

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adult life is truly just thinking “I NEED TO CLEAN” while dealing with the 17 other things that have a hard deadline