crippleprophet

[crippleprophet]

i strongly believe that it's better to take aspirin of a known dosage than to take some willow bark with an unknown amount of active compound that could also just be sawdust from an unrelated tree. like that's just factually correct. medical science is real and the supplement industry is an unregulated nightmare of mostly scams. but. the thing is. if, in order to get aspirin, i had to schedule an appointment where i tell my doctor that my friend said i might have a headache (because i can't just say i have a headache without being treated like a googlemad hypochondriac). and then the doctor nodded and ordered a bunch of expensive tests that have very little to do with my head and a lot to do with the size of my ass. and the tests all came back fine so he shrugged and asked if my head hurt and when i said yes he prescribed me some aspirin while emphasizing he didn't know if it would help but i could give it a shot if i really wanted. and if i had to do that every time i wanted some aspirin. i would probably start eyeballing the willow bark. to be perfectly honest with you.

[crippleprophet]

they say you can't pour from an empty cup but i've been doing it my whole life and aside from all of these mysterious ailments it's working out great for me

[crippleprophet]

Free link (valid for 3 months) to "Access Fictions" in TSQ's "Toward a Trans[]Crip Theory" issue. It was an honor to be part of this issue and this journal, especially with this paper, based on a chapter of my doctoral dissertation.

Abstract:

Disability studies has traditionally presented “access” as an unqualified good and a material one at that. However, engaging with the potentialities of mad opacity show us the way in which demand for access to transparency and frictionless understanding reproduces ableist institutional violence. Engaging with various strategies of opacity practice by users on Tumblr, particularly those that participate in what the author calls xenoidentity /alterhuman spaces, this article will address the stakes of both maintaining and questioning the importance of opacity. The author also offers the opportunity to consider what kinds of knowledges are inextricably linked to practices and indeed policies of opacity and opaque care. Rather than offering simplistic solutions, the author invites the reader to sit together in a position of access friction engendered by not only the presence of people who happen to be racialized, trans, and/or Mad in a disability space, but also by thinking capaciously with transmad histology, methodologies, and localities.

[crippleprophet]

chronic fatigue will have u thinking things like i miss washing and chopping vegetables

[crippleprophet]

i completely understand & agree with the backlash against students using chatgpt to get degrees but some of you are out here saying "getting a degree in xyz means pulling multiple consecutive all-nighters and writing essays through debilitating migraines and having severe back pain from constantly studying at your desk and chugging energy drinks until you get a kidney stone and waking up wishing you were dead every day, and that's just part of the natural process of learning!!!" and like. umm. i don't think that any of us should have had to endure that either. like maybe the solution for stopping students from using anti-learning software depends on college institutions making the process of learning actually sustainable on the human body & mind rather than a grueling health-destroying soul-crushing endeavor

[crippleprophet]

if there was a dangerous foodborne illness outbreak that had dozens of illnesses linked to it across the country, you would still want to know who did it even if those products were expired and no longer being sold, right?

well the US FDA disagrees with you.

there was an e. coli O157:H7 outbreak (investigation #1280) tied to a romaine and iceberg lettuce blend. the FDA knows who did it and where people got sick. 12 states so far.

but for some reason. they are being cagey as fuck about it. they have not named the supplier or even WHERE people got sick. this contaminated lettuce blend was sent to events, restaurants, a school. this lettuce is long expired and no longer being sold.

the FDA is working with the unnamed supplier to see if any of their other products are affected, but the FDA is not even giving the people the option of avoiding this brand. because they refuse to fucking name them!

fuck off with this shit!

this is a shiga toxin-producing strain of e. coli that can cause kidney failure and other long-lasting medical conditions! this is not funny! people deserve to know who did it! especially in a country where patients are so often forced to sue to get their medical bills covered, and especially considering how this is a strain of e. coli that frequently KILLS people!

if this mystery entity is named, I will let you know. it is hard to even guess if the FDA is protecting someone or if this is just another fuckup in a long long long long long string of recent fuckups by the FDA.

this is bullshit. keep an eye on investigation #1280.

[crippleprophet]

Everyone on tumblr has Conditions. maladies. I log onto tumblr and my mutuals are unwellposting. Conditions I didn't even know existed and sound like dark curses but I will see a post from friend like "died about 60% today, fine now. Made egg on toast #yummytoast". There are so many people in this world with life experiences

[crippleprophet]

I've noticed more and more in public bathrooms that people skip the handwash and just take a squirt of hand sanitizer from wall dispensers on the way out. hand sanitizer is NOT effective against most things that come out of your ass. i cannot stress this enough. i'm begging y'all. please. please please please please please use the soap.

i'm out here immunosupressed fighting for my life to not get naturally selected while people around me touch a public toilet handles and walk back to their tables to immediately eat a burger

[crippleprophet]

society needs to progress past the need to leave the house

[crippleprophet]

if you’re a disabled trans person who’s homebound and/or bedbound & you made a post for tdov (selfies, art, writing, or something else), send it to me or tag me in the replies & i’ll reblog it!

[crippleprophet]

every time it gets above 80 degrees i am always surprised pikachu about how good i feel. like during the winter i'm like "okay but it can't possibly be *that* much different in the summer" but nope once again total game changer.

[crippleprophet]

let me open by saying I Know How This Sounds (fem whose undergraduate chemistry professor recommended ze take turmeric to cure zyr arthritis, etc) so no hard feelings if you keep scrolling, but hopefully folks who know me know i'm speaking honestly about my experiences, even if those don't end up being the same for other people. so!

2 Tbsp of a common kitchen spice is doing as much or more to manage my ME/CFS as any of my meds or self-medicating drugs

@lakeeffectbitch outlines a way of trying this with a control in their reddit post (link); i just went directly to the one they thought might work so i'll put my experiences & the science/theory behind this under a cut for folks who want to avoid potential placebo effect :)

i'll get more specific about this in the "spoilers" but please be aware, especially folks with diabetes or other blood sugar conditions, that this substance may cause a blood sugar drop. it's less likely at this dose but probably keep a sugary snack on hand just in case

if you experience post-exertional malaise & want to try this but don't have spare money to spend on spices feel free to dm me & i'll see if i can help!

my experience:

i took 2 Tbsp ground sumac mixed with warm water on February 11. i tried taking it with a straw first because that's what my colonoscopy prep had said would make that go down easier but because the sumac particles were so big they didn't want to remain suspended & trying to get them in the straw was difficult, which then made it harder to swallow without, yknow, noticing that you're slurping down sediment

what worked better was getting the powder wet, putting a big clump of it on my tongue, then swallowing it with water like a pill

within about half an hour of taking the sumac it was like my fatigue just faded around me where i stood. it dissolved to the background & when i thought "oh i want to do this" or "i should do that" suddenly i found myself just doing it. i had spent the past week at least bedridden except for the bathroom, & though i took the sumac on a better day, i'd been planning to return to bed with a snack after taking it.

instead, i made myself lunch, and i sat on the couch to eat it. all of this was without taking an edible that day; usually i've gotta take at least 25mg delta 8 + 25mg cbd to even consider sitting on the couch. also, it was storming.

from my write-up the day of: "everything felt very sharp & clear & lucid." i washed the dishes from my lunch. all of these activities were about 2 hours, & at that point i emphatically needed a nap. waking up felt like after taking a muscle relaxer & sleeping: my muscles were more relaxed, & my whole body felt like it'd gotten a bit of a break

i've taken sumac at least 8 times since then on at least 5 different days (this time by modifying this sumac tart recipe to include a lot of sumac powder in the crust, which has been much more enjoyable than the Glass O' Sediment lmao) & adjusting for factors like weather, the effect has been comparable every time:

i watched Inception on the couch with my husband, & understood when she explained things to me

i watched leverage on the couch all day when it was below freezing

i worked a bit on fanfics i've barely been able to touch in a year

i "meal prepped" measuring spices, gathering ingredients, & soaking beans to make beans & rice in the instant pot later that day. i literally can't remember the last time i was able to use my instant pot, after thinking about it i think it was when i made palak paneer last summer, but that was a one-off special occasion thing, i've used it maybe 3 other times since developing ME

i wrote this post

the science:

okay a lot of this shit was over my head before i developed ME so i'm gonna be summarizing at my level lol, look to @lakeeffectbitch for a higher-level analysis

but what i do know! (all images from "The malic acid inhibiting inflammation in ankylosing spondylitis by interfering M1 macrophage polarization" by Ji et al., January 2025)

sumac contains high levels of malic acid, which is found in certain fruits (apples, peaches, etc)

the drugs.com page classifies malic acid as an inactive ingredient, so there are no known drug interactions

mice with ankylosing spondylitis had lower levels of peripheral malic acid than control mice

ID: bar graph showing mice with AS had about 0.03 micromoles per milliliter of peripheral malic acid, compared to the control mice level of over 0.2 micromoles per milliliter. the difference is labeled significant via asterisks. end ID

mice with higher malic acid concentrations had lower ESR and CRP (inflammation markers)

ID: two graphs showing lines with a downward slope. the top graph, ESR versus malic acid concentration, is labeled: r=-0.6802, 95% confidence interval =-0.8843 – -0.2578, p=-0.0053. the graph shows ESR, an inflammation marker, decreasing as malic acid concentration increases. the bottom graph, CRP versus malic acid concentration, is labeled: r=-0.6068, 95% confidence interval =-0.8537 – -0.1371, p=-0.0165. the graph shows CRP, an inflammation marker, decreasing as malic acid concentration increases. end ID

mice treated with malic acid had lower levels of TNF-alpha than the mice with untreated ankylosing spondylitis. humira & similar biologics that treat autoimmune diseases are TNF-alpha blockers

ID: a bar graph of relative mRNA expression of TNF-alpha. M0, the control mice, has a relative expression of 1. M1, the mice with ankylosing spondylitis that did not receive treatment, has a relative expression of slightly less than 4.5. M1+MA, the mice with ankylosing spondylitis who received the malic acid treatment, has a relative expression slightly less than 3. this indicates that the mice treated with malic acid had lower expression of TNF-alpha than the untreated mice. asterisks between M0 and M1 and between M1 and M1+MA indicate significance. end ID

the mitochondrial function of M2 macrophages in mice treated with malic acid "was significantly enhanced"

analysis of the mice's spinal tissue blew my fucking socks off. trying not to jump to conclusions & i know journal articles are full of errors but that looks potentially disease-modifying.

ID: a 5x3 presentation of samples of mouse spinal tissue. the control mice, which are healthy, have thick, undamaged, glowing tissue. the mice with ankylosing spondylitis have thin, curved, cracked-looking tissue. the mice treated with celecoxib, a common prescription NSAID for arthritis, appear very similar to the untreated mice. the mice treated with 250mg/kg of malic acid per day have tissue in between the untreated and healthy appearances; the tissue is "glowing" like the healthy tissue but still narrower and curved, although less so than the untreated tissue. the mice treated with 500mg/kg of malic acid per day have tissue which looks even closer to the healthy appearance, with less curvature than the other treatment groups. end ID

since i started drafting this post i've started taking these malic acid supplements from Nature's Life – the full dose made me feel weird including some heartburn so i cut the capsules & take roughly 2/3 – 3/4 of it at a time (i drop the rest into a spare pill jar to make more doses from). it's been similarly effective for me

please be aware that the supplement instructions say to only take it once a day, i haven't had any issues but everybody is different & this avenue is definitely under-researched! (the mice were given 250mg/kg per day which for me would be like 27 grams but i am not a mouse lol)

[crippleprophet]

let me open by saying I Know How This Sounds (fem whose undergraduate chemistry professor recommended ze take turmeric to cure zyr arthritis, etc) so no hard feelings if you keep scrolling, but hopefully folks who know me know i'm speaking honestly about my experiences, even if those don't end up being the same for other people. so!

2 Tbsp of a common kitchen spice is doing as much or more to manage my ME/CFS as any of my meds or self-medicating drugs

@lakeeffectbitch outlines a way of trying this with a control in their reddit post (link); i just went directly to the one they thought might work so i'll put my experiences & the science/theory behind this under a cut for folks who want to avoid potential placebo effect :)

i'll get more specific about this in the "spoilers" but please be aware, especially folks with diabetes or other blood sugar conditions, that this substance may cause a blood sugar drop. it's less likely at this dose but probably keep a sugary snack on hand just in case

if you experience post-exertional malaise & want to try this but don't have spare money to spend on spices feel free to dm me & i'll see if i can help!

my experience:

i took 2 Tbsp ground sumac mixed with warm water on February 11. i tried taking it with a straw first because that's what my colonoscopy prep had said would make that go down easier but because the sumac particles were so big they didn't want to remain suspended & trying to get them in the straw was difficult, which then made it harder to swallow without, yknow, noticing that you're slurping down sediment

what worked better was getting the powder wet, putting a big clump of it on my tongue, then swallowing it with water like a pill

within about half an hour of taking the sumac it was like my fatigue just faded around me where i stood. it dissolved to the background & when i thought "oh i want to do this" or "i should do that" suddenly i found myself just doing it. i had spent the past week at least bedridden except for the bathroom, & though i took the sumac on a better day, i'd been planning to return to bed with a snack after taking it.

instead, i made myself lunch, and i sat on the couch to eat it. all of this was without taking an edible that day; usually i've gotta take at least 25mg delta 8 + 25mg cbd to even consider sitting on the couch. also, it was storming.

from my write-up the day of: "everything felt very sharp & clear & lucid." i washed the dishes from my lunch. all of these activities were about 2 hours, & at that point i emphatically needed a nap. waking up felt like after taking a muscle relaxer & sleeping: my muscles were more relaxed, & my whole body felt like it'd gotten a bit of a break

i've taken sumac at least 8 times since then on at least 5 different days (this time by modifying this sumac tart recipe to include a lot of sumac powder in the crust, which has been much more enjoyable than the Glass O' Sediment lmao) & adjusting for factors like weather, the effect has been comparable every time:

i watched Inception on the couch with my husband, & understood when she explained things to me

i watched leverage on the couch all day when it was below freezing

i worked a bit on fanfics i've barely been able to touch in a year

i "meal prepped" measuring spices, gathering ingredients, & soaking beans to make beans & rice in the instant pot later that day. i literally can't remember the last time i was able to use my instant pot, after thinking about it i think it was when i made palak paneer last summer, but that was a one-off special occasion thing, i've used it maybe 3 other times since developing ME

i wrote this post

the science:

okay a lot of this shit was over my head before i developed ME so i'm gonna be summarizing at my level lol, look to @lakeeffectbitch for a higher-level analysis

but what i do know! (all images from "The malic acid inhibiting inflammation in ankylosing spondylitis by interfering M1 macrophage polarization" by Ji et al., January 2025)

sumac contains high levels of malic acid, which is found in certain fruits (apples, peaches, etc)

the drugs.com page classifies malic acid as an inactive ingredient, so there are no known drug interactions

mice with ankylosing spondylitis had lower levels of peripheral malic acid than control mice

ID: bar graph showing mice with AS had about 0.03 micromoles per milliliter of peripheral malic acid, compared to the control mice level of over 0.2 micromoles per milliliter. the difference is labeled significant via asterisks. end ID

mice with higher malic acid concentrations had lower ESR and CRP (inflammation markers)

ID: two graphs showing lines with a downward slope. the top graph, ESR versus malic acid concentration, is labeled: r=-0.6802, 95% confidence interval =-0.8843 – -0.2578, p=-0.0053. the graph shows ESR, an inflammation marker, decreasing as malic acid concentration increases. the bottom graph, CRP versus malic acid concentration, is labeled: r=-0.6068, 95% confidence interval =-0.8537 – -0.1371, p=-0.0165. the graph shows CRP, an inflammation marker, decreasing as malic acid concentration increases. end ID

mice treated with malic acid had lower levels of TNF-alpha than the mice with untreated ankylosing spondylitis. humira & similar biologics that treat autoimmune diseases are TNF-alpha blockers

ID: a bar graph of relative mRNA expression of TNF-alpha. M0, the control mice, has a relative expression of 1. M1, the mice with ankylosing spondylitis that did not receive treatment, has a relative expression of slightly less than 4.5. M1+MA, the mice with ankylosing spondylitis who received the malic acid treatment, has a relative expression slightly less than 3. this indicates that the mice treated with malic acid had lower expression of TNF-alpha than the untreated mice. asterisks between M0 and M1 and between M1 and M1+MA indicate significance. end ID

the mitochondrial function of M2 macrophages in mice treated with malic acid "was significantly enhanced"

analysis of the mice's spinal tissue blew my fucking socks off. trying not to jump to conclusions & i know journal articles are full of errors but that looks potentially disease-modifying.

ID: a 5x3 presentation of samples of mouse spinal tissue. the control mice, which are healthy, have thick, undamaged, glowing tissue. the mice with ankylosing spondylitis have thin, curved, cracked-looking tissue. the mice treated with celecoxib, a common prescription NSAID for arthritis, appear very similar to the untreated mice. the mice treated with 250mg/kg of malic acid per day have tissue in between the untreated and healthy appearances; the tissue is "glowing" like the healthy tissue but still narrower and curved, although less so than the untreated tissue. the mice treated with 500mg/kg of malic acid per day have tissue which looks even closer to the healthy appearance, with less curvature than the other treatment groups. end ID

since i started drafting this post i've started taking these malic acid supplements from Nature's Life – the full dose made me feel weird including some heartburn so i cut the capsules & take roughly 2/3 – 3/4 of it at a time (i drop the rest into a spare pill jar to make more doses from). it's been similarly effective for me

please be aware that the supplement instructions say to only take it once a day, i haven't had any issues but everybody is different & this avenue is definitely under-researched! (the mice were given 250mg/kg per day which for me would be like 27 grams but i am not a mouse lol)

[crippleprophet]

Hey all, Crips for Esims for Gaza has been purchasing E-sims for people in Gaza and need help to continue their advocacy!

We link them in our Hi Nay episodes but want to remind people to help out if they can and donate! They're an offshoot of the E-sims for Gaza program created by Mirna El-Helbawi, and allow you to, if you are overwhelmed by the E-sims purchasing process, streamline it.

You donate to Crips for Esims for Gaza, and they do it for you. Help these fantastic disabled activists if you're able!

Link in replies so Tumblr doesn't hide this!

[crippleprophet]

My friend Ben helped me make this flower out of pill bottles for a new project. We did both get burned

[crippleprophet]

The Disabled Parenting Project (DPP) is an online space for sharing experiences, advice, and conversations among disabled parents as well as those considering parenthood.

[crippleprophet]

Black History Month Isn't Over Just Yet, Help Me Get a Wheelchair!!!

I am a Black Chronically ill/Disabled Lesbian. I have been a mobility aid user for over a decade, and with my most recent illness flare and health set back, I desperately need a wheelchair. I have put off getting a wheelchair for years but my health is to a point where I need a wheelchair to function outside the house or I cant leave my house at all. Being stuck inside my house has done a toll on my mentally, and has prevented me from having consistent meaningful employment.

I have been saving for a wheelchair but I am nowhere close enough to buy the wheelchair I need, new adaptive tech, and the 2 ramps I need for my home. I am hoping to cr*wdfund for just the price of the chair not the ramps or adaptive tech. I need 1,120 to cover the cost of the chair.

CA: $sleepyhen

VN: wildwotko

DM: for PayPl

If you can help I would deeply appreciate it! Getting this chair would mean that I can leave my home safely, regain meaningful employment and see some of my aging elders again!