Ahimsa

Vegetarian, book lover📚
Living with ME/CFS since 1990 ♿️ She/Her
ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome

Please use #AltText on images/GIFs/videos ❤️

My posts, no boosts = https://justmytoots.com/@ahimsa_pdx@disabled.social?public_only=true

#MEcfs #PwME

Location: Oregon
What is ME/CFS?: https://s4me.info/threads/fact-sheet-1-introduction-to-me-cfs.51744/#post-596527
What is PEM? (Post-Exertional Malaise): https://s4me.info/threads/fact-sheet-2-post-exertional-malaise-pem.51745/#post-606969

Public Key

npub1mzhuw0srv8mppdqyqrs2dqllhvvlt3jj5vh9gzjzhmvk2a3tx7vqk906dx

NIP-05 Address

ahimsa_pdx_at_disabled.social@momostr.pink

Profile Code

nprofile1qqsd3t788cpkrasskszqpc9xs0lmkx04cef2xtj5pfptakt9wc4n0xqpz3mhxue69uhhyetvv9ujuerpd46hxtnfduqs6amnwvaz7tmwdaejumr0ds5ad0ac

Publishing to

relay.damus.io

nos.lol

Author Public Key

npub1mzhuw0srv8mppdqyqrs2dqllhvvlt3jj5vh9gzjzhmvk2a3tx7vqk906dx

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Last Notes

2026-04-02 16:29:30 UTC

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Had a very thought provoking conversation, here's a snippet
https://assets.disabled.social/media_attachments/files/116/336/034/206/809/981/original/6eae14c95e981e5b.jpeg

2026-03-28 19:54:17 UTC

"Live updates: Oregonians rally statewide under ‘No Kings’ banner amid national protests"
#GiftLink = https://www.oregonlive.com/portland/2026/03/oregonians-rally-statewide-under-no-kings-banner-amid-national-protests.html?gift=787e9f79-d34b-4fea-ac2e-4f1cc41c3050
"Thousands of Oregonians are participating in dozens of “No Kings” protests across the state Saturday as similar demonstrations unfold nationally for the third time in the past year."
#USPol #Oregon #Portland #PDX #NoKings #Protest #Resist
https://assets.disabled.social/media_attachments/files/116/308/540/281/445/147/original/d333b68c94bc7887.jpg

2026-03-28 18:58:01 UTC

Timeline cleanse: Rescued bobcats released into the wild!
(story has lots of photos)
Does this count as a #Caturday post? 🤔
"Orphaned bobcat kittens rescued in Oregon return to the wild"
#GiftLink = https://www.oregonlive.com/environment/2026/03/orphaned-bobcat-kittens-return-to-wild-after-oregon-rescue.html?gift=54489bf9-c15f-49e7-a75b-9504f7d4270d
"Today, the young bobcats are back in the wild, beginning a new chapter of independence and fending for themselves."
#Oregon #Wildlife #Bobcat #Cute
https://assets.disabled.social/media_attachments/files/116/308/327/666/787/407/original/9656f204983c08a9.jpg

2026-03-18 00:19:15 UTC

These young students have more courage than most politicians!
"Oregon middle schoolers stage walkout to protest ICE: ‘This generation is reaching up’"
gift link =https://www.oregonlive.com/clackamascounty/2026/03/oregon-middle-schoolers-stage-walkout-to-protest-ice-this-generation-is-reaching-up.html?gift=3c42217b-2d06-44c8-a367-81149d639bb5
"More than 100 students walked out of Gardiner Middle School in Oregon City…"
"The walkout was organized by eighth-grade students, who started planning among themselves last Wednesday, students said."
#USPol #Oregon #OregonCity #ICE #Immigration #MeltICE #AbolishICE #MiddleSchool #Protest #Resist #GiftLink
https://assets.disabled.social/media_attachments/files/116/247/314/324/421/034/original/2641271f24dc8478.jpg

2026-03-15 04:58:31 UTC

"Oregon’s senior US senator, secretary of state warn of fed voter suppression under SAVE Act"
https://www.opb.org/article/2026/03/14/read-wyden-warn-voter-suppression/
"Sen. Ron Wyden and Secretary of State Tobias Read said they would defend mail-in voting and the state’s election integrity."
"Wyden vowed to fight the bill in the Senate, where it’s expected to get a vote next week, and he and Read vowed to protect Oregon’s decades-old vote-by-mail system."
#USPol #ORpol #Oregon #Voting #Elections #VoteByMail #SaveAct #VoterSuppression

2026-03-11 19:52:05 UTC

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"you are the most beautiful birb!" 🤭

2026-02-26 21:18:45 UTC

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The Museum of HP Calculators website has a classifieds section (my friend runs this website)
https://www.hpmuseum.org/
I'm not sure whether you'll get a better price there or on ebay (I know nothing about vintage calculators) but thought I'd mention it in case it's helpful! Good luck!
Edit, in case it was not clear: This is an alternative to ebay, in case you don't get the price you want. You can't post ebay links on the forum.

2026-02-22 22:57:02 UTC

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Good to know! Thanks for passing this on! ❤️
Here's the link and phone number printed at the bottom of the flyer (Oregon DOJ):
https://www.doj.state.or.us/oregon-department-of-justice/civil-rights/sanctuary-promise/
1-844-924-STAY (1-844-924-7829)
#USPol #Oregon #ICE #AbolishICE #ICEOut #Resist

2026-02-22 16:16:43 UTC

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Excellent caption! 😁 My idea:
Short bird: Bird City? Does that mean more tourists?
Tall bird: Yes! So stand up straight and show them your good side - like this!

2026-02-22 02:34:11 UTC

"Oregon has the first ‘Bird City’ on the Pacific Coast. Here’s what that means"
gift link = https://www.oregonlive.com/environment/2026/02/oregon-has-the-first-bird-city-on-the-pacific-coast-heres-what-that-means.html?gift=4ea265fe-7344-4561-b2b7-005cfe23252d
"Yachats is the first community on the Pacific Coast to be named a Bird City by the Bird City Network, which has about 300 participating communities in North and South America, according to founders with the nonprofit American Bird Conservancy and Environment for the Americas.
Education is part of the Bird City program"
#Oregon #Birds #Birding #Wildlife #GiftLink
https://assets.disabled.social/media_attachments/files/116/111/947/952/545/027/original/3618c2a862b8c7f3.jpg

2026-02-19 22:33:26 UTC

No surprise, but it's good to have some data to back it up
"A few weeks of X’s algorithm can make you more right-wing – and it doesn’t wear off quickly"
https://theconversation.com/a-few-weeks-of-xs-algorithm-can-make-you-more-right-wing-and-it-doesnt-wear-off-quickly-276153
"A new study published today in Nature has found that X’s algorithm ... shifts users’ political opinions in a more conservative direction."
#SocialMedia #Politics #X #Twitter

2026-02-18 02:15:29 UTC

"Indigenous teen Keeya Wiki kayaked the entire Klamath River. It’s just the beginning"
gift link = https://www.oregonlive.com/native-american-news/2026/02/indigenous-teen-keeya-wiki-kayaked-the-entire-klamath-river-its-just-the-beginning.html?gift=7bb68a3d-aaea-4970-9170-7d85368602c2
"Ashland High School student Keeya Wiki kayaked 310 miles on the Klamath River last summer ...
The historic first descent of the newly undammed Klamath River by Indigenous teens captured the world’s attention and launched Keeya into the spotlight."
#Oregon #California #KlamathRiver #Outdoors #Kayaking #Indigenous

2026-02-16 01:00:54 UTC

"A photographer’s quest to document native bees includes an annual search along the California-Oregon border"
https://www.opb.org/article/2026/02/15/california-photographer-quest-document-native-bees-oregon-border/
"Hickman is on a quest to document hundreds of species of native bees, which are under threat by climate change and habitat loss, some of it caused by the more recognizable and agriculturally valued honey bee — an invasive species. Of the roughly 4,000 types of bees native to North America [she's] photographed over 300"
#California #Oregon #Nature #Bees #Science

2026-01-11 01:18:03 UTC

Portland frog protestor Seth Todd has been arrested:
https://www.wweek.com/news/city/2026/01/09/portland-frog-seth-todd-arrested-at-south-waterfront-protest/
Asked for a comment about why they were at ICE last night, Todd responded: “It’s not up to the oppressors and their lap dog enforcers to dictate what is an acceptable form of resistance and protest.”
#USPol #Oregon #Portland #PDX #NoICE #ICEout #Protest

2025-12-09 21:35:46 UTC

RE: https://mastodon.social/@Sarahp/115691737659897911
Kill it with fire 🔥
#note1sd5…g66t

2025-12-08 18:40:14 UTC

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Lovely photo ❤️

2025-11-25 01:31:38 UTC

"Oregon teenager’s ICE detention sparks high school walkout"
gift link = https://www.oregonlive.com/portland/2025/11/oregon-teenagers-ice-detention-sparks-high-school-walkout.html?gift=10daf0cf-0529-4811-9816-5fc772bd2eb1
"About 300 students walked out of school 'in response to the ICE activity in our community last week,' McMinnville School District Interim Superintendent Kourtney Ferrua said in a statement."
"Four U.S. citizens were detained in Oregon last week, advocacy group Oregon for All said, including two women who were filming ICE activities"
#USPol #Oregon #Immigration #ICE #Protest #Resist #GiftLink

2025-11-24 18:43:55 UTC

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It looks gorgeous, like something out of a cooking magazine!

2025-11-19 00:02:40 UTC

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I don't even like autocorrect. Let me just do a spell check after I'm finished.
So I can't even imagine using a software program that would interrupt my train of thought! Especially since my train of thought is easily broken (cognitive issues due to my illness)

2025-11-18 23:41:38 UTC

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I'm not even a writer and I agree 100% with this message!
Someone needs to help her turn off the damn AI option! (that's still possible, right? I don't use MS Word so I don't know ...)

2025-11-04 18:58:20 UTC

"It’s Election Day in Oregon and Southwest Washington"
https://www.opb.org/article/2025/11/04/oregon-washington-election-day-voting-portland-multnomah-ballot/
This story has general info about deadlines and locations for returning completed ballots (both states automatically mail ballots to registered voters)
Personal note from me: If you live in Washington County, Oregon, please vote yes on the Libray levy! (Measure 34-345)
#USPol #Oregon #Washington #WashCo #GOTV #Libraries #Vote #VoteByMail #VoteAtHome

2025-10-29 03:54:14 UTC

"Portland coffee shop raises over $86,000 to feed people losing SNAP benefits"
gift link = https://www.oregonlive.com/food/2025/10/portland-coffee-shop-raises-over-72000-to-feed-people-losing-snap-benefits.html?gift=913a98a4-75d6-436d-b026-62d54ff9879e
"Heretic Coffee, 5120 S.E. 28th Ave., is a volunteer-run, nonprofit coffee shop that trains people to become baristas and coffee roasters.
The coffee shop has been soliciting donations for less than a week to pay for breakfast for people losing Supplemental Nutrition Assistance Program, or SNAP benefits …"
#Oregon #Portland #PDX #FoodAssistance #SNAP #SNAPCuts #GiftLink

2025-10-05 20:53:30 UTC

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I do not follow any sports-ball teams, so no comment on the Lions, but what a cutie pie! 🐶❤️

2025-09-24 17:21:37 UTC

From Indivisible Oregon, some photos from a protest on the Hawthorne Bridge in Portland, Oregon.
#USPol #Portland #PDX #Protest #Resist #Fascism #Indivisible #SignsOfFascism
https://assets.disabled.social/media_attachments/files/115/260/402/657/756/902/original/8f2626a5b28dc048.jpg
https://assets.disabled.social/media_attachments/files/115/260/405/339/388/971/original/efb61e3502d3d7ab.jpg
https://assets.disabled.social/media_attachments/files/115/260/410/101/715/231/original/8eb2f178576c6e73.jpg

2025-09-19 17:41:44 UTC

"‘These vaccines work’: Oregon’s health officer on West Coast COVID-19 vaccine guidelines"
https://www.opb.org/article/2025/09/18/west-coast-covid-19-vaccine-guidelines-oregon-health-officer/
"The governors in Oregon, Washington, California and Hawaii have formed an alliance to counter the Centers for Disease Control and Prevention.
They say CDC decisions are "being politicized under the leadership of U.S. Health and Human Services Secretary Robert F. Kennedy Jr., a longtime anti-vaccine activist."
#USPol #Oregon #COVID #Vaccines #PublicHealth #CDC #CovidIsNotOver
https://assets.disabled.social/media_attachments/files/115/232/188/905/575/809/original/6b143c3f8f3f0848.png

2025-09-16 00:45:02 UTC

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Hope it all went well and you got your shot!
I got my COVID booster today, too! 😁

2025-09-15 23:50:32 UTC

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Just found this:
"Welcome to the New Era of Covid Vaccine Tourism"
https://www.motherjones.com/politics/2025/09/covid-vaccine-state-tourism-acip-rfk/
"Trump and RFK Jr.’s anti-vax crackdown is driving Americans across state lines—and making some pay out of pocket"
"… in an increasingly anti-vaccine public health regime, Americans are subject to a patchwork of state rules on who qualifies for the Covid vaccine and under what circumstances"
8/n
#USPol #Oregon #COVID #CovidIsNotOver #Vaccines #PublicHealth
https://assets.disabled.social/media_attachments/files/115/210/987/598/072/985/original/de12b9f15ca8e770.png

2025-09-15 21:58:49 UTC

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I also found this document which is dated Sept. 10:
"COVID-19 Vaccination Administration and Prescription Standards"
https://www.oregon.gov/osbn/Documents/JointStatementonVaccineAdministration.pdf
It includes this line:
"Lack of additional federal guidance does not, however, prohibit providers from providing vaccine prescriptions and administering the COVID-19 vaccine."
7/n
#Oregon #COVID #Vaccines #CovidIsNotOver #PublicHealth

2025-09-15 21:53:59 UTC

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Here's some official info from the Oregon Health Authority, just in case it's helpful for anyone out there.
"Frequently Asked Questions:
COVID Vaccine Access" (PDF file)
https://sharedsystems.dhsoha.state.or.us/DHSForms/Served/le-1130100.pdf
6/n
#Oregon #COVID #Vaccines #CovidIsNotOver #PublicHealth

2025-09-15 21:35:01 UTC

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Those who want to get a COVID vaccine this fall should try to get it sooner vs. later.
The next ACIP meeting on Thursday-Friday (Sept 18-19) might tighten restrictions on the COVID vaccine even more.
If you're in Oregon and you're able to go to a pharmacy in Vancouver, Washington, then that might be a better option.
Just be prepared that some pharmacies might ask questions even if you are over 65 *and* have a doctor's prescription.
5/n
#Oregon #COVID #Vaccines #CovidIsNotOver #PublicHealth

2025-09-15 21:31:17 UTC

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My husband does have some other high risk factors so he was able to get the COVID vaccine (plus the flu vaccine). But it was really an eye opener.
Our doctor's office is small. They don't have the facilities to store vaccine doses. For years the trend has been toward getting vaccines at pharmacies.
This is a huge setback. A lot of Oregonians who are over 65 are going to be stuck if even having an Rx is not enough!
4/n
#Oregon #COVID #Vaccines #CovidIsNotOver #PublicHealth

2025-09-15 21:30:25 UTC

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Then it was my husband's turn. He's over 65. He had his own Rx from our doctor. And yet the pharmacist said that he had to be in one of the high risk groups in order to get the COVID booster. The Rx was not enough!
I've been reading the news, plus info from the Oregon Health Authority, and this is the first time I've heard that being over 65 plus a doctor's prescription is not enough to get a COVID vaccine in the pharmacy.
3/n
#Oregon #COVID #Vaccines #CovidIsNotOver #PublicHealth

2025-09-15 21:29:45 UTC

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Anyway, it was not a big problem. Based on what I'd already read I knew that an Rx would not be enough even though it does not make sense.
I have ME/CFS so I fall under the category of limited physical activity. I'm lying down resting most of the time. (ME/CFS sucks, but that's a different story)
2/n
#Oregon #COVID #Vaccines #CovidIsNotOver #PublicHealth

2025-09-15 21:28:55 UTC

I got my COVID booster shot today at a local pharmacy here in Oregon. I knew I'd need a prescription (Rx) from my doctor.
Now you'd think having an Rx would be enough, right? After all, my doctor knows me and my health issues. The pharmacist doesn't know me.
But no! I'm under 65 so the pharmacist had to verify that I was in a high risk category. I already had that discussion with my doctor, right? Hence the Rx? But, okay ... 🙄
1/n
#Oregon #COVID #Vaccines #CovidIsNotOver #PublicHealth

2025-09-12 22:21:01 UTC

Remember that white house executive order against DEIA, “diversity, equity, inclusion, and accessibility”?
They went out of their way to add the A for accessibility. So this is very sad but not surprising.
"Trump administration cuts funding to Oregon disability programs"
https://www.opb.org/article/2025/09/11/trump-cuts-funding-oregon-disability-programs/
"Organizations across Oregon received notice from the U.S. Department of Education that they’d lose hundreds of thousands of dollars"
#Oregon #Disability #Accessibility #DisabilityJustice #Education
https://assets.disabled.social/media_attachments/files/115/193/650/366/587/797/original/95dec02ecac5664b.png

2025-09-12 17:12:50 UTC

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Sending you some love, hope you can get some rest ❤️

2025-09-12 17:03:17 UTC

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I just saw this and thought it might help. The Oregon Health Authority suggested going to https://www.211info.org/ (or calling 211) if you don't have a regular doctor.
source = https://sharedsystems.dhsoha.state.or.us/DHSForms/Served/le-1130100.pdf
https://assets.disabled.social/media_attachments/files/115/192/394/629/403/681/original/143e0eb606c46412.png

2025-09-12 16:48:58 UTC

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I'm so sorry! My state (Oregon) also requires a prescription now
My husband and I have a PCP (primary care physician) so we got an Rx. I hope you can get an Rx somehow! Crossing my fingers for you!
If you end up driving to a state that doesn't need an Rx then make sure your insurance will still cover the cost in that location (insurance coverage can be very confusing) if you don't want to pay for the shot out of pocket.

2025-09-03 02:51:44 UTC

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Ignore him and listen to other doctors?
https://www.pbs.org/newshour/show/epidemiologist-breaks-down-new-restrictions-on-covid-shots
Dr. Katelyn Jetelina, : "I'm sure people are really sick of the Swiss cheese model, but there's also other steps to take not to get sick, like wearing a mask in crowded indoor spaces, testing before you visit grandparents in the nursing home."
#COVID #COVID19 #CovidIsNotOver #WearAMask
https://assets.disabled.social/media_attachments/files/115/138/091/372/766/948/original/0f79beb010536cc7.png

2025-09-03 02:39:42 UTC

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"… one of the best ways to avoid Long COVID is to avoid getting infected with COVID. Kennedy has spoken about wanting to address root causes, and the root cause of post-COVID complications is infection with COVID, making prevention efforts a key way to prevent new health problems.
Unfortunately, Kennedy has approached COVID prevention the same way he has approached measles prevention. He has gone after COVID vaccines…"
#Covid #CovidIsNotOver
#LongCovid #MEcfs #USPol #RFKJR

2025-09-03 02:35:16 UTC

"Secretary Kennedy Doesn’t Care About Long COVID Patients"
https://cepr.net/publications/secretary-kennedy-doesnt-care-about-long-covid-patients/
"Kennedy has dismantled not only federal COVID prevention programs but also much of the research infrastructure devoted to understanding and treating Long COVID"
@npub10ng…m7ge @npub1gxp…cjhq
#Covid #Covid19 #CovidIsNotOver #LongCovid #MEcfs #CDC #NIH #USPol
https://assets.disabled.social/media_attachments/files/115/138/023/360/743/818/original/92d163eb78f53d39.png

2025-09-02 00:51:02 UTC

"A Democrat and a Republican will team up to try to ban masked law enforcement in Oregon"
gift link = https://www.oregonlive.com/politics/2025/09/a-democrat-and-a-republican-will-team-up-to-try-to-ban-masked-law-enforcement-in-oregon.html?gift=6def7833-fabb-485c-9566-c3b269e6a4df
"Their proposal would prohibit law enforcement officers from wearing face coverings and would require them to wear 'official uniforms' with badge numbers and names. It would not apply to SWAT teams or undercover police officers as they currently operate."
#USPol #Oregon #Police #ICE #Immigration #GiftLink

2025-08-21 00:58:17 UTC

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The worst offense? No chips! 😱
If you hand me a bag of chips and there are no chips inside then no amount of money is going to make up for that! 😉
But seriously, WTF?!

2025-08-19 21:03:47 UTC

"Oregon won’t change sanctuary law, Kotek tells Trump administration"
https://www.opb.org/article/2025/08/19/sanctuary-state-law-oregon-bondi/
"Gov Tina Kotek told federal officials Tuesday that Oregon will not abandon its sanctuary laws in the face of threats by the Trump administration …"
"Oregon’s sanctuary law, the first of its kind in the nation, prevents public officials in the state from assisting federal authorities on immigration …"
#USPol #Oregon #Immigration #Sanctuary #Trump #Resist

2025-07-16 00:22:56 UTC

From the Disability Visibility Project:
"Immigrant Rights Are Disability Rights"
https://disabilityvisibilityproject.com/2025/07/13/immigrant-rights-are-disability-rights/
"… a true commitment to justice for disabled people must recognize that many undocumented immigrants are themselves disabled and deserving of basic rights, not total erasure from the disability rights discourse."
#USPol #Disability #DisabilityRights #Ableism #Immigration #HumanRights

2025-07-15 17:18:25 UTC

"With Long COVID, the Hidden Risks of ME/CFS Are Real"
https://www.healthcentral.com/condition/coronavirus/long-covid-may-trigger-me-cfs
"Researchers found that people who had COVID were nearly five times more likely to develop ME/CFS than those who never had the virus."
@npub1gxp…cjhq @npub10ng…m7ge
#MEcfs #PwME #LongCovid #PwLC #COVID #CovidIsNotOver #ChronicIllness
https://assets.disabled.social/media_attachments/files/114/858/399/555/363/442/original/f2b55643b31343ce.png

2025-06-18 22:22:09 UTC

Sen. Padilla's speech on being forced to the ground & handcuffed after asking a question:
https://www.youtube.com/watch?v=G-mKheWHHDw
"… we've seen masked federal agentsn in tactical gear, ordered into our communities. We've seen a disturbing pattern of increasingly extreme and cruel immigration enforcement operations targeting nonviolent people, at places of worship, at schools,
in courthouses, all to meet an arbitrary quota."
(automated captions, some errors)
#USPol #Padilla #Immigration #Democracy #Resist

2025-06-16 19:30:19 UTC

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They also changed their rules to remove national origin.
I'm not sure why that part didn't make the headline, especially with all the other anti-immigrant actions going on in the US.
https://assets.disabled.social/media_attachments/files/114/694/679/145/078/522/original/570e76cdcc32159b.png

2025-06-01 21:55:18 UTC

"Climate activist Greta Thunberg joins aid ship sailing to Gaza aimed at breaking Israel’s blockade"
https://apnews.com/article/greta-thunberg-gaza-freedom-flotilla-ship-aid-51729fb2b549e55547907a3b1623b515
"Climate campaigner Greta Thunberg and other 11 activists set sail on Sunday afternoon for Gaza on a ship aimed at 'breaking Israel’s siege' ...
[they] will try to reach the shores of the Gaza Strip in an effort to bring in some aid and raise international awareness over the ongoing humanitarian crisis"
#Politics #Climate #Environment #Gaza #Thunberg #FreedomFlotilla

2025-05-12 17:24:42 UTC

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If you learn nothing else from my thread today, please remember this:
Exercise is NOT recommended for people with ME/CFS!
Exercise is not good for anyone who has post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE), and that includes a significant portion of people with Long Covid.
This video has more info:
https://www.youtube.com/watch?v=wxSwYUennBA
3/n
@npub1gxp…cjhq @npub10ng…m7ge
#MEcfs #PwME #PEM #PESE #LongCovid #MillionsMissing #MEAwareness #WorldMEDay

2025-05-12 17:20:30 UTC

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My story, in brief:
I caught an unknown virus in Dec 1989. I thought I'd recovered but then started getting new symptoms in Jan 1990. In March I went on medical leave.
Over the next 5 years I went to dozens of doctors but got no diagnosis until 1995. I tried to keep working but finally got too sick to work in 2000.
Pushing myself all those years led to a permanent worsening of my condition.
Not a good idea! 😔
2/n
@npub1gxp…cjhq @npub10ng…m7ge
#MEcfs #PwME #MillionsMissing #MEAwareness #WorldMEDay

2025-05-12 17:05:00 UTC

💙 It's May 12th, International ME/CFS Awareness Day 💙
My ME/CFS onset was in Jan 1990
🚨 Many recent ME/CFS cases have been triggered by COVID 🚨
In this thread I plan to post about 3 main things:
1. My ME/CFS story (briefly)
2. Helpful resources for patients and clinicians
3. Advocacy options for patients & allies (friends/family) - mostly US based
1/n
@npub1gxp…cjhq @npub10ng…m7ge
#MEcfs #LongCovid #PostCovid #Disability #DisabilitySOS #CovidIsNotOver #MillionsMissing #MEAwareness #WorldMEDay
https://assets.disabled.social/media_attachments/files/114/495/920/545/052/068/original/d28c5c8d4aa5fad7.png

2025-04-30 22:21:54 UTC

"Vermont Judge releases Columbia University student Mohsen Mahdawi"
(audio only, transcript to come)
https://www.npr.org/2025/04/30/nx-s1-5382366/vermont-judge-releases-columbia-university-student-mohsen-mahdawi
"Columbia University student Mohsen Mahdawi — detained by authorities at his naturalization interview — is free for now. He had been in prison for two weeks after his arrest earlier in April."
#USPol #Immigration #DueProcess #FreeSpeech #Mahdawi #Resist

2025-04-23 23:22:31 UTC

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Good one!
Sadly, I've been going through that since 2000 (on social security disability)
Edit: I'll add that getting ERISA disability is so much harder. Nothing radicalizes you like being surveilled. They found nothing new by following me, it just reinforced everything I had already reported, but it was so creepy!

2025-04-23 22:05:33 UTC

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Thanks for posting that!
Quote from the article:
"Some states are considering requiring people to work, go to school or volunteer in order to receive Medicaid benefits, a condition that would trim the rolls and save money."
Putting aside for a moment the fact that these kind of work/school requirements add an expensive layer of bureaucracy, what about all the folks on Medicaid who cannot work due to serious chronic illness or some other kind of disability?

2025-04-12 01:18:21 UTC

"‘The SAVE Act isn’t about preventing fraud.’ Oregon representative gives fiery speech as House approves changes to voter registration"
https://www.oregonlive.com/politics/2025/04/the-save-act-isnt-about-preventing-fraud-oregon-representative-gives-fiery-speech-as-house-approves-changes-to-voter-registration.html
“The SAVE Act isn’t about preventing fraud, it’s about preventing participation in our elections" - Rep. Maxine Dexter
#USPol #Oregon #Elections #Voting #SaveAct #VoterSuppression #Resist

2025-04-06 00:41:57 UTC

"For Some Disabled Protestors, 'Hands Off' Went Virtual"
https://www.motherjones.com/politics/2025/04/hands-off-virtual-zooms-disability-covid/
“We know we have to teach everyone how to include us"
#USPol #HandsOff #Disability #Accessibility #LongCovid #MEcfs #ChronicIllness
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2025-04-04 16:56:26 UTC

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I just found another virtual event which is organized by folks with Long Covid
"Hands Off! COVID Long-Haulers Fights Back"
Saturday, April 5
1 – 2:30 pm Central Time
Virtual event
Join from anywhere
https://www.mobilize.us/handsoff/event/771943/
#USPol #HandsOff #Protest #Resist #Virtual #LongCovid #ChronicIllness #Accessible

2025-04-04 16:53:14 UTC

🚨 The Hands Off! protests are tomorrow, Saturday, April 5 🚨
Find one near you -
https://www.mobilize.us/handsoff/
Can't attend in person? There's a virtual event:
"Hands Off! Disabled Community Fights Back"
2 - 4 PM Pacific Time
Virtual Event
Join from anywhere!
https://www.mobilize.us/handsoff/event/770700/
#USpol #HandsOff #Protest #Resist #Virtual #Disabled #Disability #Accessibility

2025-03-26 17:33:21 UTC

Re-posting with content warning:
As always in #uspol, what’s controversial here is not that an American bomb leveled an entire apartment building in #Yemen killing 53 people (both Republicans and Democrats believe such operations are permissible), only that the plans to do so were discussed on an unsecured chat #signal #signalgate
source = https://spore.social/@abshlimon/114229476401590873
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2025-03-05 02:06:14 UTC

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Senator Wyden's Town Hall has now started. Here's the YouTube link for
https://www.youtube.com/watch?v=kcVPzXFq0WQ
#USPol #StateOfTheUnion #Resist #Oregon #TownHall

2025-03-05 00:31:22 UTC

I know most folks who follow me won't be watching the president's speech tonight.
But for those who want to stay politically engaged tonight here are two options:
1. Sen. Wyden of Oregon is holding a virtual Town Hall
* new link! *
https://www.youtube.com/watch?v=kcVPzXFq0WQ
2. "The State of Our Union" on Roland Martin's YouTube channel:
https://www.youtube.com/watch?v=-WlcDbwwjwI
Thanks to @npub1p8w…mn06 for item 2, here's a link to the original post:
https://beige.party/@paulboeck/114104589421979745
#USPol #StateOfTheUnion #Resist #Trump

2025-02-10 18:11:12 UTC

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Beautiful! ✨

2025-02-06 22:09:39 UTC

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Thanks! ❤️
The part about how media outlets want you to feel hopeless and helpless reminds me of a recent podcast:
"Can Hopeful Skepticism Replace Harmful Cynicism?"
https://www.scientificamerican.com/podcast/episode/the-science-of-cynicism-and-the-transformative-psychological-power-of-hope/
"cynicism is a tool of the status quo"
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2024-12-31 01:43:45 UTC

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Thanks! Minor infection, I'll be better after I start the antibiotics

2024-12-31 01:40:09 UTC

Whenever I'm feeling crappy my boosts on here changes to all animals, mostly cats 😂

2024-12-23 19:23:33 UTC

Headline:
"Patients are frustrated that there isn't a reliable treatment yet for long COVID"
/begin snark
Wow, that *must* be frustrating! You know what else is frustrating? Having ME/CFS since 1990 without a reliable treatment!
/end snark
I do support more research on Long Covid treatments!
But we also need to research ME/CFS, POTS, etc. Folks who knew about ME/CFS predicted the pandemic would increase chronic illness cases.
See #MEAction post:
https://www.meaction.net/stoprestpace/
#LongCovid #MEcfs
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2024-12-21 19:07:35 UTC

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That's so cute! 😁

2024-12-20 15:34:02 UTC

"Oregon AG Rolls Out New Sanctuary Promise Community Toolkit as a Resource for all Oregonians to Understand Sanctuary Laws and Access Resources"
https://www.doj.state.or.us/media-home/news-media-releases/oregon-ag-rolls-out-new-sanctuary-promise-community-toolkit-as-a-resource-for-all-oregonians-to-understand-sanctuary-laws-and-access-resources/
"New websites offer information and resources for those seeking to understand Oregon’s sanctuary laws and immigration rights"
#USPol #Oregon #Sanctuary #Immigration #Deportations #CivilRights
https://assets.disabled.social/media_attachments/files/113/685/866/363/055/390/original/ad316f3c48b7dc82.jpeg

2024-12-16 21:26:47 UTC

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That matches my experience! (no, not here in Oregon - while growing up in South Carolina)

2024-12-09 21:39:53 UTC

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That pun was a definite stretch because who says tubey?! Folks would probably say tube-like.
It was just a silly thought that came into my head!

2024-12-09 21:35:44 UTC

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PS. I should have added 😉
It's just a silly joke 😁

2024-12-09 21:19:19 UTC

I'm trying to decide whether to make mac and cheese using shells or elbows.
Tubey, or not tubey?
That is the question

2024-12-08 18:16:30 UTC

One good thing about living with a chronic illness for 30+ years (especially an illness like ME/CFS, stigmatized and belittled by the general public and even some researchers) is that I've had a lot of practice fighting against despair and hopelessness.
So many reasons to feel despair, but I keep trying to do what little I can (very little, I'm mostly homebound) to change things for the better.
My impact may be small but it's better than doing nothing!
#Hope #Activism #Advocacy #DoSomething

2024-12-06 18:03:04 UTC

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So many infuriating stories out there for how women have been treated by doctors! 😡
And the story I told earlier was about a woman doctor, so it's the culture of medicine, not just the individuals...

2024-12-06 17:15:52 UTC

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The lesson I learned from that visit was to never show any emotion to doctors when describing my medical history or symptoms. Well, at least never show emotion to new doctors. Sometimes it's okay after having known them for several years.
That's probably the wrong lesson to learn but I've built up a lot of walls in order to get through doctor appointments.
PS. Can you imagine a doctor asking a male patient whether their symptoms are due to regret over their vasectomy? 🙃

2024-12-06 17:13:32 UTC

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My worst doc story:
During an appt (a new doc, never seen her before) I listed my symptoms yet again. Then I started tearing up over how bad my symptoms were getting.
Her response?
"I see you had a tubal ligation 6 months ago. Do you think your symptoms could be because you regret that decision?"
ARGH! I managed not to scream at her in anger, just gritted my teeth and said "No." And found another doc.
30+ years later: Still sick, still no regret over my tubal ligation

2024-12-06 16:59:02 UTC

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So sorry you're dealing with POTS symptoms 😔
I've had orthostatic intolerance (NMH, POTS) since 1990. For me it's part of ME/CFS which was triggered by some unknown virus.
Have you seen this recent blog post by The Disabled Ginger?
"Learning to Live Horizontally - Your Guide to All Things POTS"
https://www.disabledginger.com/p/learning-to-live-horizontally-your

2024-11-26 16:35:12 UTC

Such a great story! 😍
"Fold paper. Insert lens. This $2 microscope changes how kids see the world"
https://www.npr.org/sections/goats-and-soda/2024/11/24/g-s1-35181/microscope-lens-students-foldscope
"Once assembled the Foldscope is the size of a bookmark. It’s small enough to fit in a pocket and can magnify up to 140 times.
Each unit costs around $2 to make. Foldscopes are offered for free to kids in lower income countries; various upgraded models with extras are sold as well, earning money for the charitable endeavor."
#Science #Education #Foldscope #NPR

2024-11-19 21:59:24 UTC

I just called my own congress rep and left a message asking her to vote NO on #HR9495
More info here:
https://www.nationofchange.org/2024/11/15/tlaib-aclu-and-advocates-warn-h-r-9495-could-empower-trump-to-silence-nonprofits-and-stifle-dissent/
I urge everyone to call even if your representative voted no previously. The attached image has a suggestion for what to say when you call.
#USPol #USPolitics #NonProfits
https://assets.disabled.social/media_attachments/files/113/511/836/736/879/095/original/b3bbb53497b661fa.png

2024-11-14 21:59:49 UTC

"U.S. Rep.-elect Bynum will be Oregon’s first Black member of Congress after flipping House seat"
https://www.pbs.org/newshour/politics/u-s-rep-elect-bynum-will-be-oregons-first-black-member-of-congress-after-flipping-house-seat
"It’s not lost on me that I am one generation removed from segregation. It’s not lost on me that we’re making history. And I am proud to be the first, but not the last, Black member of Congress in Oregon,” Bynum said at a press conference last Friday.
#Oregon #USPol #USpolitics

2024-10-28 17:40:51 UTC

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Story from OPB:
https://www.opb.org/article/2024/10/28/ballot-box-burned-portland-vancouver/
To check on your ballot status:
Oregon = https://sos.oregon.gov/voting/Pages/myvote.aspx?lang=en
Washington = https://voter.votewa.gov/portal2023/login.aspx
#USPol #Election2024 #Ballots #Oregon #Washington

2024-10-27 22:37:59 UTC

#Autumn #Fall #Trees #Foliage #SilentSunday
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2024-10-20 23:43:47 UTC

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If you're an elections nerd here's a behind the scenes look at how vote by mail works in Washington County, Oregon:
https://www.youtube.com/watch?v=lwDyj7WZfV8
#USPol #Election2024 #Oregon #WashingtonCounty #VoteByMail #VoteAtHome

2024-10-20 23:37:23 UTC

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More info on vote by mail rules in different states can be found here:
"How vote at home friendly is your state?"
https://voteathome.org/state-profiles/
#USPol #Election2024 #VoteByMail #VoteAtHome
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2024-10-20 23:22:24 UTC

*sigh*
The Trump campaign decided not to put an item in the Oregon voter's pamphlet, which started a rumor that election officials had *prevented* Trump from being listed there, which caused a bunch of jerks to call and complain 😠
"Oregon elections phone lines closed after a flood of conspiracy calls"
https://www.opb.org/article/2024/10/17/oregon-elections-phone-lines-closed-after-a-flood-of-conspiracy-calls/
"the office received around 400 calls … Many of those calls were abusive, she said, while some were explicitly threatening."
#USPol #Oregon #Election2024
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2024-10-20 22:48:00 UTC

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Just FYI, according to this Washington Post article "fewer than half of all votes in 2022 were cast in person on Election Day."
"How people cast their vote in each state, and how it’s changing"
gift link = https://wapo.st/3YgsjgC
(click on the link above ⬆️ and not the preview below to avoid the paywall. It does ask for an email, not sure whether it has to be valid)
#USPol #Election2024 #VoteByMail #EarlyVoting #GiftLink #GiftArticle

2024-10-20 22:22:37 UTC

We voted! 🗳
I'll take our completed ballots to a drop box later today 😁
I always laugh when Obama says to get off the couch and vote because we voted while sitting on the couch! Here in Oregon we've voted at home for so long that I forget how many folks can't vote that way.
#USPol #IVoted #HarrisWalz #VoteBlue #FederateTheVote #Oregon #VoteByMail #VoteAtHome
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2024-10-15 17:43:59 UTC

Quote posting to add hashtags:
"Wow. Kamala Harris is really good at this.
Fantastic recovery from Obama's careless phrasing in this interview with Justin Carter from The Shade Room."
https://hachyderm.io/@mekkaokereke/113309611321284023
#USPol #KamalaHarris #HarrisWalz #Election2024

2024-10-15 01:51:08 UTC

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Thanks for the heads up! 😁
Oregon, an all vote by mail state (well, I guess it's possible to vote in person, but hardly anyone does!) has not yet started mailing out ballots. They will start mailing them on October 16.
I did get my voters' pamphlet, though!
My voting plan is to fill out my ballot at home and then return it via one of the nearby drop boxes 🗳
#USPol #Elections2024 #Oregon #VoteByMail #VoteAtHome
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2024-10-08 00:00:36 UTC

"Salmon swim freely in the Klamath River for 1st time in a century after dams removed"
https://www.oregonlive.com/environment/2024/10/salmon-swim-freely-in-the-klamath-river-for-1st-time-in-a-century-after-dams-removed.html
"For the first time in more than a century, salmon are swimming freely along the Klamath River and its tributaries — a major watershed near the California-Oregon border — just days after the largest dam removal project in U.S. history was completed."
#Oregon #California #PNW #Wildlife #Salmon

2024-10-03 21:29:52 UTC

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Beautiful ❤️

2024-10-03 18:50:01 UTC

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Yep! Here's an article from OPB about Measure 117:
https://www.opb.org/article/2024/10/03/measure-117-ranked-choice-voting-oregon/
Portland, Oregon will be using ranked choice in the upcoming election. Quote:
"Voters have already been using ranked-choice voting in Corvallis and Benton County elections. They will use it for the first time this year in Portland and will begin using it in Multnomah County in 2026."
#USPol #Oregon #PDX #Election2024 #RankedChoice #RankedChoiceVoting

2024-10-03 17:31:00 UTC

From Alice Wong, Disability Visibility Project:
"2024 MacArthur Fellows Program"
https://disabilityvisibilityproject.com/2024/10/02/2024-macarthur-fellows-program/
"Hard to believe but I am a 2024 MacArthur Fellow! This has been a year with lots of highs and lows so receiving this was a surprise and it means a lot."
#Disability #DisabilityJustice #Disabled #AntiAbleism #AliceWong
https://assets.disabled.social/media_attachments/files/113/244/656/666/396/403/original/5b714be4645bb6c5.jpg

2024-10-01 17:54:31 UTC

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Correction, I think it's international raccoon day, so not just a USA thing? 😂
https://www.daysoftheyear.com/days/international-raccoon-appreciation-day/

2024-10-01 17:51:11 UTC

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I heard it's also national raccoon day! 🦝 😁

2024-09-23 18:07:23 UTC

"Oregon voters to decide on ballot measure to give every resident $1,600 that has sparked massive opposition fundraising"
gift link:
https://www.oregonlive.com/politics/2024/09/oregon-voters-to-decide-on-ballot-measure-to-give-every-resident-1600-that-has-sparked-massive-opposition-fundraising.html?gift=1d820dac-dd7f-4d89-a517-609e9320318a
#USPol #ORpol #Oregon #Election2024 #BasicIncome #GiftLink #GiftArticle
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2024-09-18 23:21:04 UTC

"‘Red Alerts’ issued for Wednesday and Thursday to help migrating birds in Oregon"
https://www.oregonlive.com/weather/2024/09/red-alerts-issued-for-wednesday-and-thursday-to-help-migrating-birds-in-oregon.html?gift=b8c71a81-0fa5-4c10-8768-9fad9ebc673f
“Lights Out, Oregon” ... asks residents and people managing buildings to turn of unnecessary overnight lights.
“Most birds migrate at night using stars to help guide them,” Coolidge said, “so lights out campaigns help reduce the light pollution that drowns out the stars and helps keep birds safely aloft on their journeys.”
#Birds #Birding #Oregon #PNW #LightsOut #GiftLink #GiftArticle

2024-09-12 21:34:59 UTC

From The Sick Times:
"A brief, oral history of mask blocs: Part 1"
"Mask blocs are grassroots mutual aid groups that distribute high-quality masks, such as N95s, for free in response to public health failures during the ongoing COVID-19 pandemic. Many were created and are led by disabled people, many of whom had little or no prior organizing experience."
https://thesicktimes.org/2024/09/10/a-brief-oral-history-of-mask-blocs-part-1/
#COVID #CovidIsNotOver #LongCovid #PostCovid #PublicHealth #MaskUp
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2024-08-10 04:18:41 UTC

"Tim Walz Is Leading the Way on Long Covid Funding"
https://www.motherjones.com/politics/2024/08/tim-walz-minnesota-long-covid-funding-harris-vp/
"Now, with Walz a prospective Vice President, Long Covid and related conditions may have a more highly placed advocate than ever before—with a demonstrated record of working to combat this post-infectious disease."
@npub1gxp…cjhq @npub10ng…m7ge
#LongCovid #MEcfs #POTS #Dysautonomia #Research #Minnesota #USA #USPol
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