*berkeley* pulmonologist's office just phoned to see if I wanted a follow-up appt, & when I asked if staff & drs were masking she tensed & said, "the mask mandate is over." & w/real patience I said, "yes, I know, that wasn't my question," & she said w/some spice, "no we aren't."
Picked up my compounded meds today & then stopped in a nearby prepared-foods market. Young guy--maybe early to mid 20s--behind the counter is wearing an N95! I say, "It's always so meaningful, seeing another masker." He says, "Yeah, it's different where I live." Now, I don't 1/
@anne_theriault
When a doctor dismisses my symptoms, I say I want it noted in my chart -- while I wait -- that *they've chosen* not to run any tests. They then run tests. I recommend this approach to anyone facing discrimination instead of diagnostics. (I have 2 autoimmune disorders.)
real life, right in front of me, apparently abled, who's informed & looking after his community. We chat a bit more & he mentions he's still Covid-free. And tho my HR was in the 140s by then, & my head pounding & crackling, I felt something like happiness. 3/end
know if he means it's better there or worse--like, could be even two maskers are rare. So I say, "Where do you live?" "Oakland," he replies. "People over there are organized & know what's really going on. But not Berkeley." At which point I'm choking back tears. A person in 2/
I told my ME dr I don't want to take the breathe/drink/wait/breathe version of the H. pylori test. She asked why--fair enough. I said b/c lab staff don't mask, nor patients in that little room, & she said, "Well, it's just a few seconds." Why is everything like this?
@Meia_dream
@et_ark
@anxiousmodern
Grief isn't governed like that. And whether it's ambition or endurance, "love perservering" without a subject or object, cut loose from its known form through loss, is exactly what's mournful -- & differently companionable -- about it. Like a ghost that doesn't know it's a ghost.
@freetheoctopus
A "friend" reached over & pulled my mask down *outside* a market, I didn't get Covid, & I've never spoken to him again but for the text I sent abt bodily autonomy when I got back to my car. Lordt, I wish Dawn could give me a call.
ran into a former neighborhood friend who's having an absolutely hellish year (non-Covid related). brief sketch of my stuff, & she mentioned that one of her neighbors has LC & is now on disability--an immigration attorney, whose partner is an environmental attorney & acting 1/2
@LLtwoL
@monaeltahawy
It's really worrying. No one is that brazen unless they've been getting away with plenty like it. Why do people let themselves *not see* what's happening in front of them because the man's a priest or pastor? I'll never understand.
as her caretaker now. people don't understand all the unfurling levels of community loss & how this impacts them, too. we need less ableism & more sympathetic imagination in everyone. 2/2
@RattusFlattus
I didn't ask. She was too unpleasant to bother. I'll look for a different dr outside that UCSF practice. Screening them should be pretty easy if that conversation is any indication. Hostility abt masking from a pulmonologist's admin in Berkeley? Nope. That's too much.
p.s. we were indoors & she was unmasked. even when i connected the dots for her, using myself & her neighbor as anchors, along w/the research & data, she seemed disconnected from it -- unable to relate to it personally. that same thing i detect in most others.
@LLtwoL
@monaeltahawy
I saw a post earlier from a young woman who was upset & showed the video to her mom, who said it was nothing -- harmless. And the girl said in that moment she realized how on her own she is, in terms of her safety. I was just holding back tears.
Gah. Moved to tears again--is this MCAS or just me?--b/c my devoted friend
@throughtraveler
sent this pic of a stranger at a local market just now. Know hope.
😭🔥💙
(Obscuring their face b/c that seems right w/o explicit permission to post.)
@cbouzy
Me: [Standing in a kitchen, talking w/friends at a party]
Woman: [Enters in distress, looks around, locks on me] Could you help me w/this? You look like the kind of woman who knows how to get a stain out of a suede skirt.
Me: 👀[She’s not wrong]
My favorite person in the world, who has thus far avoided Covid thru staying entirely isolated but for his academic work, & who has lupus, fckng tested positive today & all I want is to burn everything ev-ery-thing down.
@cmclymer
I ran into him in a NYC hotel bar 2 years ago, introduced myself & told him how much his courtesy & decency meant to me as a young woman in that sitch. He was loveliness itself.
@cmclymer
disrespectful toward me. Except for Sam Elliot, who I could see was uncomfortable. Before they left, he came over to me privately at the front counter, apologized in a very full way for the table's behavior, & tipped the cook & I a lot of cash.
@LauraAJarrett
I like this part: Bromwich was a federal prosecutor in the U.S. Attorney's Office for the *Southern District of New York*. We eagerly await this podcast someday,
@PreetBharara
.
@lollipop_bandit
This doesn't surprise me, & I'm so sorry you have to deal w/that bllsht. The culture there is rank. I'm leaving all my UCSF-affiliated doctors, except for my GP at this East Bay hybrid office. She's hardcore abt masking -- exactly as it should be.
It's strange & hard to feel so moved & grateful & scraped up by Ed Yong's piece today, & to have no one in one's real life to share it all with--to really, really share it with. I know half of these tears is about that. My heart goes out to everyone in our communities today. 🫂
@m_scribe
These replies abt the importance of "human connection" -- ahem -- & "colds" are cruel AF & ignorant besides. Many of us appreciate the complexity of these choices & the greater social context from which you made yours. Hopefully folks recover fully w/no long-term health effects.
➡️UPDATE 4: I wanted to let you know that an IRL contact reached PR yesterday. They are still with us -- & they know there are others thinking about them, missing their presence in our community, & willing to offer support however they can. 🫂
b/c i have not internalized the notion that seeing a doctor who "believes ME" is the same thing as receiving proper care, i'm here to state that stanford's CFS/ME clinic is NOT an ME clinic by any stretch of the imagination. & the idea that the office staff (unmasked) are 1/
How do we help in these situations? When people are too sick/impoverished & can't live on their own? Depend on abusive caretakers? When social services & police can endanger them further?
@tunein
@jonfavs
You can't talk abt the online Covid & LongCovid communities & the 2/
presenter in Zoom meeting has Covid & sounds terrible; meanwhile, all week, presenters continuously reference the pandemic in past tense. how do people survive this level of cognitive dissonance?
@elizabethnicols
oh definitely. also, i frankly don't have a lot of confidence in the care (or admin chops) of people who aren't masking & are/will be getting multiple infections. the cognitive effects are real.
@alana4201312
i don't even know what to do anymore with all the fury i feel on behalf of us all. but i'm so relieved you finally have this diagnosis & i hope like hell the care you receive now & through surgery & recovery is orders of magnitude different.
@KQEDnews
I commend you above all for this sentence: "Remember: It’s not weird to not want to get COVID." It might be useful to encourage folks to swab the back of the throat, both inner cheek areas *and* high into the nasal cavity -- they'll get a clearer result & earlier.
@tunein
@jonfavs
disastrous institutional public health response w/o talking abt the fact that disabled people--we've created 10+ million more & counting--have higher violent victimization rates than non-disabled people across all racial/ethnic groups. layers of crises we've been abandoned to.
@angryhacademic
That word "control" really leapt out, too. There is so much dangerously & disastrously wrong abt how medical professionals are trained -- & not trained.
@BretterTogether
What a decent way to work! 💟 My dog had ER surgery in Jan & it turns out he has cancer. I'd say 85% of the staff at the specialist practice are still masking & *all* drs in exam rooms. The *customers* of course are another story.
a bookseller colleague called today, & they're planning to reinstate a mask-only morning time at their store. (dunno how many days.) some staff resistance, but it's his shop. baby steps! it is leadership, tho, & could motivate other bookstore owners in the area. 😭
@AWolfeful
This is very, very bad. Add to this trend the scope of Sinclair Broadcast Group, the dismantling of Net Neutrality & the gutting of public/higher ed, & I don't know, folks . . . We better get this revolution moving before we're atomized & propagandized into submission.
i can't believe i ever rode a bike. or swam laps. or ran errands all day. or deep-cleaned my house over a weekend. or hosted dinner parties & drank everyone under the table. or drove to SLC on biz, instead of flying, for kicks. or read a book straight thru from morning to night.
@MamaLawyer3
i hope they keep masking & in a consistent manner. really worry abt the level of re-infection we're going to see over the next 10 or so weeks, especially.
@fcknsyd
I don't know what people owe each other. Or what people are & aren't capable of. What matters to them. Or what friendship is abt for them. But I know for sure that person can't be trusted around the deep or tender parts of you--& what they say re those things is untrustworthy.
There are people in that LC community arguing right now that LongCovid wasn't front & center at the hearing. How does referencing other infection-associated chronic conditions -- mostly as a warning of the U.S. history of failure -- make LongCovid not front & center?
@thedigitalyenta
trauma isn't processed during ongoing trauma. you'd have to believe the pandemic is over. that it isn't disabling & killing 1000s every wk. that chronically ill, disabled & immunocompromised people aren't being endangered every minute by fantasies of normal. that you aren't too.
my god it is expensive being sick like this. imagine it takes 3 days to change the sheets on yr bed w/o incapacitating you for an unknowable amt of time. that's your max energy output available each day. how much time or help (ie, money) do you think it wld require to meet 1/2
#PodSaveJon
You can't self-report that you're not ableist, alternately ignore & mock the online disability community, perform empty lip service abt advocacy, & then privilege replies from people who think like you. Listen. Learn. Believe disabled people.
@CrookedMedia
Pro tip: if you don’t want to be called an ableist eugenicist don’t use your platform to defend ableist & eugenicist policies & the propaganda propping them up during a mass death & disablement event… by using ableist insults to try to discredit critique from disabled people 🙃
Novavax is a safe and effective vaccine booster.
France, Swizterland and South Korea approved it regardless of vaccine history after it produced a favorable immune response following phase 2 clinical trials out of the US, Australia, South Africa, and the UK.
@theLUCASTDS
@HeaneySonya
gee, lucas, i wonder if maybe a stroke effects the brain & what & how things are communicated? also, i wonder if sonya doesn't exist merely to convince *you* of her reality?
also stanford "ME Clinic": arguing w/me that my cholesterol/pre-diabetes
#s
& 30lb weight gain are due to so-called lifestyle & eating habits not inflammation & ME-induced/related metabolism issues. it's the 90s, i guess? oh well, at least prince & bowie are still alive then.
@CZEdwards
i mean, this is their patient group, half alive, mostly untreated & untreatable, fighting for every scrap of functionality, burdened by many conditions & symptoms, prey to infections & difficulty clearing infections, & we're meant to accept flippant invitations to covid exposure?
Disabled & vulnerable people at the very f*cking least deserve to be safe in healthcare spaces during a pandemic. If you live in California & understand yourself to be liberal, Left, progressive, &/or an ally to vulnerable & disenfranchised communities, you're up to bat. ⬇️
i wish everybody was required to spend a month *just listening* to LC & ME & chronic illness twitter. people are waaaaaaay too insulated from what's happening around them.
@seeritarun
@snarkislife
@thor_benson
I'm from Texas (with Oklahoma roots, too) & the story in our family was about Cherokee ancestry. My takeaway -- from all of us this -- is that we should be unpacking how these myths operate & what they mean *about* us & *for* Native peoples now.
I mean, she went out of her way to introduce ME/CFS into that conversation, linking it to LC--& then she doubled down, straight up saying that neglect of that illness & patient group means lost ground for understanding & treating LC. I'm just stunned.
@LiaSeth
@_sputnik1
@CarolineMoss
@Nicole_Cliffe
It was life changing when my therapist told me I could leave any place -- event, party, gathering, grocery store -- whenever I needed to. I just . . . didn't know.
@svershbow
My rescue, Walter, slept like this for 4 days straight. The shelter put his age at around 2yo, & he'd been there for over 3 mos. Poor thing was on his best behavior for ages -- didn't vocalize or bark for the first half of 2014. Gah. I love him to bits. Thank you for fostering!
ON THE OTHER HAND, the offices at stanford's autonomic disorders clinic: the lighting is dimmed. the pace is measured. staff have clearly been trained--they speak in quiet tones & are mindful of sensory stimulation. & they're ambiently gentle. i was just at a rave by comparison.
@WayneLaMarch
@AndyRichter
This is a job interview for a lifetime appt to the highest court, which so far has been handled w/o the protocols/transparency of every other such appt. The GOP are refusing to reopen the background check to investigate further. Questions of due process aren't even relevant yet.
Is it just me or could doctors & HCWs & scientists understand themselves as having power & platforms, & start organizing & fighting for mitigations already? I mean, it doesn't mostly have to fall to chronically ill & disabled people, does it?
@benryanwriter
Are you suggesting that b/c you are (so far) "fine" that people don't need to be concerned abt contracting Covid, regardless of their health status? If not, what is this personal anecdote from a "health & science reporter"--& attached to yr previous tweet--meant to convey?
@rokwon
Yes, ma'am. I think I've also got a second tape that goes something like this: since you are not (yet) severely impacted, it is your duty to find & witness every story, every bit of news, every experience, & every last thread of this debacle. Surely a form of survivor's guilt.
the lights or recline the automated chair--but did ask if i wanted to know my weight--& slams the door when they exit is peak indifference to the condition & the patients. if you're an ME clinic & you know anything abt the illness & believe the sxs, WTAF are you doing, 4/
@KNDmex
@EricHolthaus
@qz
Alejandro González Vázquez, 46, commits suicide instead of boarding his flight back to the US mainland. Unable to reach his family, he had come to Puerto Rico to check on them, said his niece. But during his stay, Vázquez could not obtain his mental health medication.
@ashtonpittman
It's time to start taxing churches already. The exemption was meant to enforce the separation between church and state, but instead it's provided deep cover & deep pockets for leveraging political power.