iiinova — where your digital self keeps evolving

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 06/09/2026

Hesitant to chime in because the issue is related but not the same. You'd be surprised how many disabled pwME are actually the ones doing the grant- and paper-writing, though their names never appear on anything. I have very mixed feelings on this.

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Jen Doyle @poisontart.bsky.social · 06/09/2026

And yet, no mention of a mass- disabling event in the last 6 years? Weird.

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The Ghost of Kloud Kat @kloudkat.bsky.social · 06/09/2026

They really saw people just becoming more accepting of disabilities of others and thise people not being sufficiently miserable in navigating life with those disabilities and decided it was a problem.

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fernflower.bsky.social @fernflower.bsky.social · 06/09/2026

Those of us in the ME/CFS community have watched this movement building for years now. In addition to pushing [more] ableist eugenics into the mainstream, it seems like a fairly intentional effort to avoid paying disability supports for chronic illness.

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Kari Shaw @clvrchick.bsky.social · 03/09/2026

It’s time to add a work requirement to anyone in Congress. In fact, any restriction that they want to enact against the public should be added to their requirements. You want to drug test people getting aide, then they all have to be drug tested.

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margin of error @ihaveopinions.bsky.social · 03/09/2026

Are there any more beautiful words in the English language than "chatbot not working"?

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World Health Network @thewhn.bsky.social · 03/09/2026

COVID-19 doesn’t only pose a risk to people considered “high risk.” Long COVID can affect anyone, including people who were previously healthy, nondisabled, and children. Symptoms can persist for months or longer and may significantly impact daily life. (...)

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Falco SkyWolf @falcoskywolf.bsky.social · 29/08/2026

At $450 so far, with $700 rent needed before 11AM tomorrow. 22 HOUR DEADLINE. Also need $500 between storage, groceries, and laundry ASAP. #PleaseShare, and chip in if possible? Rent is top priority, but all are survival essentials! #MutualAidRequest #DisabilityCrowdFund #KeepFolksAlive

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Areanna @areannathatsall.bsky.social · 30/08/2026

Rent cleared now Falco must raise enough for food laundry and storage. Make sure he can eat please!!

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Alone LL @ladylonghaul.bsky.social · 30/08/2026

Thank you, Heather! I’m going to be okay (financially,) eventually. Everything takes time to settle when there are multiple people deceased in a family. My parents did set things aside for me and my brother. I don’t want people to choose me over others in the community who have less support.

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Alone LL @ladylonghaul.bsky.social · 30/08/2026

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Alone LL @ladylonghaul.bsky.social · 28/08/2026

My friend with severe ME was just in the hospital receiving fluids yesterday. She’s trying to find out which manufacturer made her saline.

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Judy Stone @drjudystone.bsky.social · 28/08/2026

Exciting news - I updated today's post on the summer surge in #Covid to reflect that all 3 new vaccines received FDA approval today--Moderna, Pfizer, and Novavax-Sanofi. www.forbes.com/sites/judyst...

forbes.com

Covid-19 Cases Surge—Here’s What’s Different This Summer That Will Help

As Covid again increases, these will help you weather or prevent infection: vaccines, masks, Paxlovid, metformin, azelastine, some antihistamines, and Ensitrelvir.

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Alone LL @ladylonghaul.bsky.social · 28/07/2026

I still can’t believe it.

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#MEAction Network @meactnet.bsky.social · 20/07/2026

Are you someone with myalgic encephalomyelitis/chronic fatigue syndrome #MECFS or #LongCOVID who’s been to the emergency room at least once over the past 10 years for your symptoms? Clinical care needs your voice! Take the Emergency Department research survey: surveys.mayoclinic.org/jfe/form/SV_...

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BladeoftheSun @bladeofthes.bsky.social · 10/06/2026

There is always this make-believe that nothing can be done to billionaires, spread of course by the billionaires themselves. But actually it is the billionaires themselves that can't do anything if the Government attacks them.

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Alone LL @ladylonghaul.bsky.social · 28/05/2026

Thank you! I can’t believe they’re both gone. 💔

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heather (still away) pls 🔁📌 @k1llstreakz.bsky.social · 04/05/2026

😭💔🫂 please help my friend through an immensely hard time ko-fi.com/ladylonghaul or DM @ladylonghaul.bsky.social for other options

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Alone LL @ladylonghaul.bsky.social · 28/05/2026

Thank you, Heather! The sudden loss of both my parents within 4 months is proving to be a level of grief difficult to bear. My health issues continue to interfere with the responsibilities and rituals of passing that my sibling and I find ourselves dealing with. It’s a lot.

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Sherrilyn Ifill @sifill.bsky.social · 25/05/2026

Again, please share. In every aspect of American history you will run smack dab into the critical contributions of Black people. It’s not Black history. It’s American history. Trying to erase it is a fool’s errand. We live it every day. time.com/5836444/blac...

time.com

The Forgotten Black History of How Memorial Day Started

Historians like the Pulitzer Prize winner David Blight have tried to raise awareness of freed slaves who decorated soldiers' graves in 1865

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Alone LL @ladylonghaul.bsky.social · 24/05/2026

Thank you! As I’m sure you understand, I can’t hold all this grief and the other emotions that are riding along. I’m going to white knuckle this until I’m done with obligations or until I can’t anymore. I still can’t believe they’re both gone even though I had tried to prepare myself.

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Alone LL @ladylonghaul.bsky.social · 24/05/2026

Thank you! I’m still trying to help my brother get all of our parents’ belongings out of the life care community by a certain date they gave. We have changes to our finances that could impact my health insurance and my monthly budget. I’m trying not to catastrophize until everything has settled.

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Alone LL @ladylonghaul.bsky.social · 22/05/2026

My doctor just received a letter from BCBS regarding a long list of medications that they won’t cover.

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Alone LL @ladylonghaul.bsky.social · 21/05/2026

I’m not verified. Sometimes it takes BS a minute. I’ll tinker in settings.

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Alone LL @ladylonghaul.bsky.social · 21/05/2026

It’s not giving me the option to DM you yet.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/05/2026

If you find this work valuable, and are able to donate, I hope you will. If you've already donated or can't right now, but this work is meaningful to you, a personal request from a friend is many times more likely to end in a donation than a repost. ❤️ I'll be reaching out to friends & family too.

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Alone LL @ladylonghaul.bsky.social · 21/05/2026

I have a question about how donations get allocated when there isn’t any specific program notated. Could you give me a way to ask this question with more detail privately?

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/05/2026

Our Emergency Department fundraising is on fire! Note: in order to make the best use of our $15k match, we need to raise $15k from other donors. We're so close! Can you get us a little closer? millionsmissing.funraise.org/fundraiser/m...

Emergency Department Guidelines
We're 75% of the way there, thanks to you!
...and we still have 25% to go!
On the right is a donut chart showing 75% of funds have been raised, with 25% to go.
Underneath is a stacked bar graph, showing the proportion of the grant paid for by Whittemore Peterson, the 15k match, the amount of donations we've received that aren't the grant or the match, how much longer we have to go until we've raised all $15k of the $15k match, and a chonk we still need to raise.

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Alone LL @ladylonghaul.bsky.social · 20/05/2026

She hadn’t been able to sleep for a year due to pain. She couldn’t sit down without excruciating pain. Treatment was for her to do more physical therapy or try OTCs or some medication. Her requests to get MRIs were all denied & dismissed. They had her try acupuncture. She had cancer “everywhere.”

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Alone LL @ladylonghaul.bsky.social · 20/05/2026

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Alone LL @ladylonghaul.bsky.social · 20/05/2026

My mother followed my father 4 months and 3 1/2 days later. She had been asking her doctors to run tests, order MRIs, etc. for months to years in some cases. They kept prescribing her physical therapy and either NSAIDS that her body could no longer tolerate or mild pain management.

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Alone LL @ladylonghaul.bsky.social · 20/05/2026

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Alone LL @ladylonghaul.bsky.social · 20/05/2026

It was in her bones, her spine, even her heart. She was “riddled with it.” Her new PCP knew as soon as the results of her initial bloodwork came in. This doctor sent her directly to the ER. There, she finally had scans she had been asking to have done for years. My mother passed 9 days later.

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Balaeniceps tex 𓅣🌏🏳️‍🌈🏳️‍⚧️☭ @socialistpuffin.bsky.social · 04/04/2026

The idea that poor people don't deserve to have good, nutritious, and delicious food is pure classism and is a desire to deprive every last opportunity for joy from the lives of people struggling to get by.

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𝕊𝕦𝕟𝕕𝕒𝕖 𝔾𝕦𝕣𝕝 @sundaedivine.lol · 04/04/2026

Lasers were a huge scientific breakthrough and now we use them to play with cats. Computers were also a huge scientific breakthrough and now we use them to look at pictures of cats. In other words, science was made for cats.

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Chantal James @chantalalive.blacksky.app · 05/04/2026

Y'all have to stop thinking our world's fucked up because some people have disabilities that are making them fuck it up instead of that it has some incredibly wrong systems in place!

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Alone LL @ladylonghaul.bsky.social · 19/03/2026

Thank you for posting for me!

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Alone LL @ladylonghaul.bsky.social · 19/03/2026

Thank you for boosting for me! I haven’t been checking on here much since my dad passed.

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Alone LL @ladylonghaul.bsky.social · 21/01/2026

“We’ll discuss what to do about this later.”

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Alone LL @ladylonghaul.bsky.social · 21/01/2026

Pick up the nearest book. Turn to page 42, post the second sentence. “We’ll discuss what to do about this later.”

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Alone LL @ladylonghaul.bsky.social · 21/01/2026

The first book I picked up has no page numbers. So I counted to page 42. There’s no second sentence. The next three closest books are journals I haven’t used yet. About to check the bottom of closest stack, below two unused journals. Feel that this apparent emptiness is its own clue.

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Alone LL @ladylonghaul.bsky.social · 19/01/2026

As of 2 weeks ago, I’ve lost my father. It happened so quickly that I couldn’t go to him to be there. I saw him over video call over a week earlier on Christmas Eve day. I’m not sure if he knew who I was each time he looked at the phone placed in front of him that day. bsky.app/profile/lady...

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Alone LL @ladylonghaul.bsky.social · 19/01/2026

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