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Sep 9, 2020 17 tweets 7 min read
I accidentally ran out of my prescription for pain pills. I am in pain. So I did #WhatDisabledPeopleDo and opened the drawer in my house where I keep all the expired, unused, doesn't-really-work pills. Now I am on a different pill that expired in 2017 and guess what, it's working
Maybe it just needed a few years to age like a fine wine?
And if anyone's thinking, "How do you accidentally run out of your prescription?" Well, Norman, I've been distracted by art and while I wish I could just dial-the-prescription-in, I can't b/c of Your War On Opiates. So instead I have to have this conversation every couple months:
Doctor: Hello there. What can I do for you?
Me: Well, hello. I keep being the same disabled person and need this pain med.
Doctor: You know this is a dangerous prescription.
Me: Yes, you've told me this 48 times.
Doctor: Okay then. I'll send it in.

One week later
Doc bill: $180
Surprise twist. It's the twice/year appointment for blood work that I need. This is all fine by me. I'd rather blood work than liver failure. But it means I will not get pain relief until Monday at the earliest. And ...
So now I wonder if I should expect an accidental, unplanned withdrawal? From these pain meds I take every day? At 7.5mg? And what might that withdrawal look/feel like? Someone is thinking: "Ask your doctor." But no. I'm asking disabled people.
Someone is thinking: "Should you really be talking about this on Twitter?" Yes. This is exactly the kind of thing I wish to talk about. #OutOfTheShadowsAndIntoTheLight is a film reference. #Disabled film. Google it. #ChronicPain #DisabilityTwitter
Disabled friends DM-ing me "what film is it" soooooo ok my ref is just a bit too obscure even for us. Here's the trailer. Reference is at 49 seconds.
Since no one advised me about what this pain med withdrawal might look/feel like, I'm here to give just my account to any #disabled #chronicpain #spoonie who might be in this position due to art-drawing-attn-away-from-refills, or insurance denial, or can't get to the pharmacy or
& I think "withdrawal" might not be the right word? as it has addiction connotations? but I don't want to further stigmatize addicted ppl? but I don't want ppl worrying abt me either? so like what is the word when a disabled person is suddenly off-meds b/c ableist system? idfk
Here's what it looks/feels like to unexpectedly go off a prescribed opiate as disabled person. First 24 hours. Okay, this is fine. OMG I'M IN IMMENSE PAIN. No, it's fine. I cannot make any decisions. HURTING HURTING. I cannot make decisions b/c withdrawal or pain? DUNNO NO IDEA.
Advil Advil Tylenol Tylenol Advil Advil Tylenol Tylenol Advil Advil Tylenol Tylenol. Some pill from 2017. Pain, pain, pain. I'll do anything even yoga. Yoga? No, not yoga. Pain, pain, the thing that goes on the doorknob that hangs from the doorknob and then I put my neck in it.
The above is an actual device I have but I can't remember what it's called. It takes your neck and lifts it up. If you try it, I advise only 10-20 mins at a time b/c it's side effect is headaches. Little bit of relief with it. Pain. No decisions. Work, work, work, work, work.
Today I called the doc & sd, "I think you shld actually prescribe something else until the refill is approved," & they checked my chart, saw my xrays, thus remembered I have metal from the 1980s in my body, including somehow a hook, and sd, "Ohhhh, we can refill this."
Is it a success story? No, it is not. The success story will be when all #disabled people and #chronicpain people & #mad people & #sick people have access to the meds we need, when we need them, without any bullshit & completely free.
And by the way, my doctor is even a disabled doctor. Yes, really. I chose him because he's disabled. I only know he's disabled through the whisper network, though. He has never disclosed to me. #WeDoThisToEachOtherAlso
Friend says, "You know Dr. V's not the reason for the blood work and the appointment for the refill. And the blood work isn't about your liver. It's about checking to see if you're abusing the prescription." #ItsNotAboutMyLiver #WhyDontTheyJustSaySo #AllThisPaternalism

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More from @JillianWeise

Jan 28
Slow-tweeting a poem. Invitation for #cyborg poets, that is #disabled poets, to join me in slow-tweeting our poems. Here is the tag #SlowTweetPoetry
Title: Dream about the War on Opioids by Someone Who Uses Opioids, Responsibly, For Chronic Pain

First line: Where are we? Is this Phenix, Alabama?
My ex -- the musician who covers Bob Dylan -- says, "I know the spot."
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This is a 1" by 1" soft recycled suede ring. Do you stim? Then you'll like this ring. #StimRing #Neurodivergence #ADHD #PTSD #Anxiety #TactileArt Holding the ring between in...
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Jan 25
I wrote this for all of us in #HigherEd absolutely any of us. Please use it. How? Send to upper admin if you're concerned about teaching in-person. But what did I leave out of this essay? I'm about to tell you. First the essay with my thanks to @truthout…
1. Students themselves are electing to go virtual in my classes. They are just doing it. And that's fine by me. My classes are, at present, in-person and asynchronous online.
2. A common myth in pandemic pedagogy is that online synchronous learning is better than asynchronous online learning. We don't have to reinvent the wheel here. #RhetComp has already done studies on the benefits of asynchronous online learning.
Read 11 tweets
Jan 17
Here's the deleted tweet from @lifetimetv * I'm neurodivergent but not Autistic. As an ally, and poet whose job is to think about names, words, language, I'm going to analyze this deleted tweet.

* But also read actually autistic ppl on this topic
Image Description: "and that's why they #LeaveItToGeege heart emoji . Don't miss the premiere tomorrow at 10/9 c" Photo of a 7-person family . Six people appear to be white. There is one Black masculine person in the back row. Text over the pic reads +

The words "manual" and "never gives up" are bright pink.

Tweet appeared on Jan 11, 2022 at noon.
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Do you have to do anything while you are in bed? No. Emphatically no. You do not. I am just antsy and getting used to the situation. I am not saying "be productive from bed." I do not endorse that shit. Be you.
Lurker: Can I get some sizes on these rings?

Yeah. I got you. Hold on a second.
Read 5 tweets
Jan 16
Truly wtf is going on in this book I'm reading. LIVES OF WIVES by Laura Riding Jackson. Can I get an assist from #Modernists

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I shall hold a poll. What is going on in this book?
"Pythias wld have liked to hide herself away in the boat in which he was sailing & then surprise him when they were out at sea. But she had much to arrange. For one thing, the seizing of the city's jeweled regalia ... Instead, she sent on board that famous statue of herself."
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