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Stephen

@sventh.bsky.social

Designer turned patient β™Ώ Here mainly to yell about it away from my main socials

220 Followers  |  356 Following  |  55 Posts  |  Joined: 13.11.2024  |  1.9278

Latest posts by sventh.bsky.social on Bluesky

Demi Lovato - Kiss (Official Music Video)
YouTube video by DemiLovatoVEVO Demi Lovato - Kiss (Official Music Video)

Historically when Demi's music is very good, she's not - I hope my girl is ok bc this is a banger πŸ’–

11.10.2025 03:17 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

@michaelmezz.bsky.social I could imagine Ray being great on Better Future :)

24.11.2025 06:38 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Ray D. Madoff with Gary Gulman: The Second Estate | LIVE from NYPL YouTube video by The New York Public Library

This was my introduction to Ray Madoff and it was GOOD. Haven't yet read her book (The Second Estate), but even this talk at NYPL drops so much info about *how* exactly the ultra-wealthy has rigged the tax code to work in their favor, and also how they continue to get away with it (propaganda).

24.11.2025 06:29 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0
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Young Britons beg government for Β£150k neck ops abroad The NHS doesn't offer the procedure, and UK private surgeons have stopped. Their only option is to raise Β£50,000-Β£150,000 each for neurosurgeons abroad.

Nice to see UK CCI patients banding together, and in the process getting an article out there about CCI.

While 0-3 neurosurgeons in the US diagnose and treat CCI (depending who you ask), access to care is dismal here, too. Hopefully someday this condition will get more recognition and research 🀞

23.11.2025 22:43 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

It's been interesting to reaffirm through experience that the first few years of my illness could, and should, have gone differently.

You shouldn't have to be a certain kind of sick to get good care and support.

20.11.2025 23:02 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

My newest medical issue, while tragic in its own ways, is understood and largely measurable, and has been met with more attentive care and community support, and less ableism (and other -isms) than the rarer, harder to diagnose, or "invisible" conditions that originally knocked me down.

20.11.2025 23:02 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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What Bangladesh Teaches Us About Resilient Capitalism Bangladesh’s political transition offers powerful lessons for investors and businesses and anyone navigating rising global uncertainty β€” from emerging markets to the U.S.

So impressed by my friend's piece in Forbes! She breaks down how Bangladesh, even amidst continuous political instability, has continued to grow bc of its sustainable businesses that meet real needs and don't rely on political protections. (...kinda the opposite of the companies driving US growth?)

19.11.2025 15:46 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

I can't believe this sentence, but I was recently injured by a test performed *for another injury I'd sustained from a different test.*

Today, we checked if treatment for the recent one's been effective. I told the Dr. I was optimistic. My results: 0 objective improvement.

Clowned again 🀑

18.11.2025 22:11 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

You can opt out of the new Amazon hand scanners at NYU Langone facilities.

Check in by name on the kiosk, and X out of the hand scanner enrollment when it comes up.

Desk staff are supposed to help with this if you say you want to opt out.

28.05.2025 17:59 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

By the way, this isn't the first time I've been told a doctor isn't accepting certain patients. I've consistently had to seek out, travel to, and wait for the handful of specialists that are willing to deal with my conditions. Which is already demoralizing. But a call after a year is next level.

12.11.2025 19:42 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Just got a call about a genetics appointment I've been waiting a YEAR for saying that the doctor is no longer seeing #EDS patients, nor is anyone else at #NYULangone. No further explanation, no next steps.

Besides the logistical nightmare of it all, how do you think that leaves patients feeling?

12.11.2025 18:45 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

I had to be on guard not to be pushed or jostled, I had to change my route due to a broken elevator, nobody offers their seat on the bus or train even with my neck brace visible because my other disabilities are invisible. An errand an able bodied person would make on their lunch break is like war.

05.11.2025 21:13 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Venting: my body hurts, my legs are jelly, my head is spinning, I'm short of breath. All from traveling from one Manhattan neighborhood to another for a 20 minute doctor's appointment that resulted in more bad news, and more appointments and tests I'm dreading having to leave the house again for.

05.11.2025 21:12 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

Sure I only made two calls phonebanking, and sure that was a few months ago, but he couldn't have done it without me

05.11.2025 05:59 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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'Born Poor’ in America, They're Now Fighting to Shake Poverty’s Lingering Impact | FRONTLINE Watch the prologue from "Born Poor" β€” a documentary made over 14 years that follows kids in three families who try to overcome poverty from childhood through the teen years to young adulthood.

Before its PBS and streaming premiere tonight, watch the prologue from "Born Poor" β€” FRONTLINE's documentary, made over 14 years, that follows kids in three families who try to overcome poverty from childhood through the teen years to young adulthood.

07.10.2025 20:42 β€” πŸ‘ 13    πŸ” 7    πŸ’¬ 4    πŸ“Œ 1
Demi Lovato - Kiss (Official Music Video)
YouTube video by DemiLovatoVEVO Demi Lovato - Kiss (Official Music Video)

Historically when Demi's music is very good, she's not - I hope my girl is ok bc this is a banger πŸ’–

11.10.2025 03:17 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

This is a silly example, but honestly bots and rage bait need to be bigger news. The bots on TikTok alone are so inflammatory and easy to fall for, and get SO much engagement from real accounts. It's no wonder people are growing less trusting and more on edge offline as well.

27.09.2025 02:16 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Can't stop recommending it to people. Thanks for bringing Jason and other smarties to the masses πŸ™ (I first saw your stuff on TikTok)

10.09.2025 14:52 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Bar chart showing delivery worker pay rising from $11.72 to $19.26 per hour after fair pay law enforcement, while average order cost slightly increased from $38.35 to $39.11.

Bar chart showing delivery worker pay rising from $11.72 to $19.26 per hour after fair pay law enforcement, while average order cost slightly increased from $38.35 to $39.11.

08.09.2025 17:11 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0

Since listening to the episode last week I've been getting stuck into Jason's book The Divide. Eye-opening stuff

08.09.2025 03:10 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

surely we can come up with something better for 7 billion people than being lorded over by a bunch of plundering elderly murder and torture enthusiasts who whisper to each other about printing spare organs so they can immiserate others in perpetuity

04.09.2025 04:24 β€” πŸ‘ 9309    πŸ” 2075    πŸ’¬ 137    πŸ“Œ 81

Ty, they were misleading last year, too. I voted by mail so had time to look into them, found the explainer on your site and sent it to friends – we would've voted "yes" across the board if we saw only what was written on the ballots, but made different choices once we had more info

02.09.2025 23:36 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Under Dr. Oz, Medicare is launching a pilot program that will use AI to determine whether patients would be covered for certain procedures.

Companies running the program will be paid a share of the savings from rejecting claims.

Who in their right mind voted for this? No one.

02.09.2025 17:03 β€” πŸ‘ 7030    πŸ” 2739    πŸ’¬ 420    πŸ“Œ 239
Screenshot from insurer showing newly-denied past claims from April in the sum of hundreds of thousands of dollars

Screenshot from insurer showing newly-denied past claims from April in the sum of hundreds of thousands of dollars

Wait, this is a much better screenshot to convey the gravity of this situation lolllllllll πŸ™ƒ

31.08.2025 02:46 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

So I'm getting calls from my providers, all trying to sort out these refunded/denied payments, and am finding out that many of them don't even accept Medicare. TLDR: I could be on the hook for thousands because of an odd policy that the Medicare office has told me is unchangeable

31.08.2025 02:07 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
Screenshot of my health insurance app, showing just a few of many denied claims that are each worth hundreds or thousands of dollars.

Screenshot of my health insurance app, showing just a few of many denied claims that are each worth hundreds or thousands of dollars.

Now, the primary insurer I'd used for those several months of appointments, and one MAJOR SURGERY, is demanding refunds, claiming they were technically my secondary insurance at that time, even though I hadn't. Even. Been. Approved. For Medicare yet at that time... 🧡

31.08.2025 02:07 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

Welcome to my newest insurance hell – one I'm going to talk about because it's so absurd. I was recently awarded disability (amazing!), but due to a policy that I imagine is well-intended, my Medicare was backdated several months.... 🧡

31.08.2025 02:07 β€” πŸ‘ 5    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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It Came from the Closet Through the lens of horror - from Halloween to Hereditary - queer and trans writers consider the films that deepened, amplified, and illuminated their own experiences.Horror movies hold a complicated ...

Embarrassed I hadn't considered just how much (beyond viral outbreaks or religious psychosis) of what we deem "scary" is simply ableism, until I heard @zefrrr.bsky.social's beautiful essay in my new favorite spooky book

31.08.2025 00:41 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

What's the problem you're trying to solve? You'll likely get more useful feedback!

15.08.2025 16:41 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Great episode & review of the evidence on fare free buses.

Also, love this line from @sgoodyear.bsky.social:

β€œWe need these public spaces and public goods that bring together people from all walks of life, all backgrounds, to create solidarity in our society… the bus is uniquely able to do that”

13.08.2025 20:16 β€” πŸ‘ 32    πŸ” 9    πŸ’¬ 1    πŸ“Œ 0

@sventh is following 20 prominent accounts