Ginger Billie

Now more than ever I’m convinced losing Anthony Bourdain meant we lost probably the biggest person on tv who advocated for the wonders of meeting new people and calling anyone online who hated learning new cultures the children they were, ruthlessly to the camera.

I wonder how many people realize this is the norm.

“Households containing an adult w/a work-disability require, on average…an additional $17,690/year…to obtain the same standard of living as a comparable household w/o a member w/a disability.”

www.nationaldisabilityinstitute.org/reports/extr...

Well, we did it. We go rid of about 3/4 of my closet bc I am too big for the clothes or they are too tiring/impractical to put on.

I had a whole drawer of snowboarding socks which we gave away, but I couldn’t bear to get rid of my snow/surf outerwear yet.

I know the time is coming. 😞

'You've given us all a lot of hope': Dropkick Murphys play outdoor Abolish ICE benefit The free concert took place across the street from the Alex Pretti memorial on Eat Street in Minneapolis.

"‘You’ve given us all a lot of hope’: Dropkick Murphys play outdoor Abolish ICE benefit"

'The free concert took place across the street from the Alex Pretti memorial on Eat Street in Minneapolis.'

bringmethenews.com/minnesota-li...

Could a Cancer Treatment Cure Autoimmune Diseases? A “living drug” was developed as a cancer treatment. Now it is showing promise for conditions, such as lupus and multiple sclerosis, that have long been considered incurable.

Germany 5 patients with severe lupus received a single CAR T cell infusion and entered drug free remission.

Scientists reprogrammed their immune cells to remove harmful B cells.

The living therapy may offer hope for lupus and multiple sclerosis.

www.newyorker.com/culture/anna...

But when Porzingis addressed reporters afterward, before the fifth question, he let out a yawn. An uncontrollable, extended yawn. Porzingis apologized, as if to make sure he wasn't being perceived as rude. Then he yawned again, sending out a hidden reminder of the persistent exhaustion that is threatening to derail his NBA career: The 30-year-old former All-Star was diagnosed last year by Celtics doctors with postural orthostatic tachycardia syndrome (POTS), an autonomic condition that can dramatically increase heart rate and cause dizziness and fatigue. "I felt all right. Far from being in perfect shape," Porzingis said. "But I think for [the] first game back after a while, getting some energy back, feeling good. ... I think it's just a matter of time to get in a better rhythm." Three mornings later, Porzingis woke up sick in his team-provided San Francisco hotel room and called the training staff. He went from being the spotlight story of the ABC afternoon game against the Denver Nuggets to being so ill that he couldn't even come to the arena.

Long article on 'mysterious' illness of NBA's Kristaps Porzingis

www.espn.com/nba/story/_/...

Just parts on his health:
www.s4me.info/threads/well...

Viral onset plus these symptoms suggest ME/CFS as a big possibility. Best for his long term health I think to take an extended break

#CFS #MEcfs

When I’m crashing my door dash bill for that time goes up.

I don’t have a full time caretaker and my spouse works.

So when crashes happen this is how I’m feed.

Which is tricky bc eating low histamine limits options.

It is also cheaper than in home help.

First, this sucks majorly and I hope the PEM moves on swiftly.

Second - what the heck is with the ear pain?!! I have it too and I think so does @rahallclifford.bsky.social ?! It is so dang weird.

people use the fact that long covid is vaguely defined to include all kinds of minor health issues that generally healthy and functional people can have to dunk on pwLC. this is a real thing but it harms people with scary neurological/immunological LC, it isn’t evidence that we’re hypochondriacs.

This! My spouse told me and I just go, “I’m really rooting for her. She’s been though so much.” While also feeling very staunchly that drunk driving is not OK.

Conundrum:

I take Valtrex for a cold sore in my nose. 2 days later the eye pain starts. It gets worse when I’m over exerted. No other eye symptoms.

Happens like clock work every time now.

Started this summer (first time I went to ER/saw 3 opthamalogists).

I know the pattern but WTF IS IT?

a woman is playing a guitar and singing into a microphone while a band plays behind her . Alt: a woman is playing a guitar and singing into a microphone while a band plays behind her . The words “I’m bleeding” are overlaid.

I got like 20 vials taken this morning and OMG I always feel better after I loose blood.🩸

Multilayer metabolomic integration reveals bioenergetic disruption in Long COVID - Journal of Translational Medicine Journal of Translational Medicine - Long COVID represents a significant health challenge, with 10–20% of patients with COVID-19 experiencing persistent multiorgan symptoms. The heterogeneity...

link.springer.com/article/10.1...

I’m in lots of pain so pretty much everything is annoying me today, but the pipeline of tech person -> long covid -> health start up is getting ridiculous.

You’re not gonna cure yourself nor will your AI start up.

Make community, advocate and get MORE FUNDING FOR THE NIH AND LABS!

I am so beyond annoyed with these Twitter folks who are like:

I had covid and now I’m cured!

Then make you dig for the secret and it’s just like… ketotifen.

What works for you isn‘t a cure for all. And also, you’re probably not cured and just in a remission state.

a cartoon of spongebob with an anchor on his cap Alt: a cartoon of spongebob with an anchor on his cap writing the word “trash” in pink cursive

Feel like hot garbage today.

Crash from overextending and forgetting antihistamine last night.

Imagine having a disease that severely limits your quality of life but no one has heard of it, you can't work or get a benefit, and any help you get at the doctor involves hours of background research and advocating for yourself.

#longcovid

Prepandemic respiratory illness tied to increased risk of long COVID

CIDRAP: 'Prepandemic respiratory illness tied to increased risk of long COVID'

'In a research letter published this week in JAMA..researchers led by a team at Yale..analyzed..and estimated that 8.3% of US adults report having experienced long COVID'

www.cidrap.umn.edu/covid-19/pre...

Exploratory analyses of Immunologic Features in a Randomized, Placebo-Controlled Trial of Nirmatrelvir/Ritonavir for Long COVID — Bornali Bhattacharjee et al. "no virological or immunological evidence supports [Paxlovid] as a treatment for Long COVID." "Decreased RANTES levels were associated with symptom improvement, independent of treatment, age, sex, or vaccine status"

From a randomised, placebo-controlled trial of Nirmatrelvir/Ritonavir:
"no virological or immunological evidence supports [Paxlovid] as a treatment for Long COVID."

www.medrxiv.org/content/10.6...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC #PwLC #postcovid #postcovid19

I hope you get to see them soon. Not being able to be present with with people we love is not fair. 💜

At the end of snow season in NZ we’d trek in the bush a lot, when all the birds were starting to come back out and oh my goodness the beautiful birds we’d see!

Ear pain is ramped up today from too much work yesterday.

It’s the worst bc there is nothing I can do to ease it except continue to rest.

I’ve been to four ENTs. Multiple head and neck MRIs.

Everything looks fine, but I don’t understand how chronic ear infxns, fullness and pain is fine?

lol I think about this a lot. I’m like did I really not hurt the ENTIRE day before?

Increased incidence of mild cognitive impairment in long COVID patients - PubMed The cumulative incidence and adjusted hazard of MCI (and specifically AD-related MCI) at 4.4 years was significantly higher among Long-COVID patients compared to recovered-COVID and COVID-negative controls.

260 participants, found Long COVID was linked to more mild cognitive impairment over 4.4 years, 27% vs 5% after recovery and 1% in COVID negative controls, with about 4 times higher risk and a higher risk of Alzheimer related MCI.

pubmed.ncbi.nlm.nih.gov/41772376/

But since we are there, having some uses for accessibility does not make it accessibility tech because accessibility includes thoughtful, transparent affordances for safety, wellbeing, privacy, and autonomy.

I think this will be fun!

Honestly, the best things my parents did and what the adults in our family really try to do is delight in the interests of the younger gen.

I have recently been introduced to axolotls! 😂

Also, I heard quails are another good egg layer if she’s interested in that!

I see it sometimes on insta from a chronic illness influencer, but I can never remember who or what it is:

Does anyone have a good homeopathic alternative for nausea?

Zofran works great, but I get a weird “hungover” ish feeling a few hours after.

The constant, quiet devastations of this disease.

Talking with my nephew he doesn’t remember me well anymore. It’s been that long.

I said, “I used to run with you in the stroller, push you on a surfboard into waves, go biking and hiking, got you on skiis, we did so much fun stuff!”

💔

An illustration from Long COVID Transformed My Mommy shows two kids in bed with their mother. She wraps them both up in a hug.

An illustration from Long COVID Transformed My Sister Into a Turtle shows a turtle wearing sunglasses and headphones. The text reads, "My mommy is like a turtle that doesn't want to come out of her shell. She avoids loud noises and bright lights. She prefers cozy, quiet places."

We haven’t seen many narratives about — or for — kids whose family members have #LongCOVID. Author and educator Sara Robitaille seeks to change that with her two new children’s books, Long COVID Transformed My Mommy and Long COVID Transformed My Sister into a Turtle. bit.ly/4csWXfE

a pack of kittens closes in a a large dog standing on a chair

David Attenborough [whispering]:

“As the predators close in on their helpless prey, we can only watch in silent horror, for it is not man’s role to interfere in the hierarchy of nature.”