rahaeli
@rahaeli.bsky.social
Cofounder @dreamwidth.org / disabled queer cat lady / running social media since before it was "social media" and Trust & Safety since the dawn of time / do not cite the deep magic to me, I wrote it / no, I'm allergic to that, too
yeah, with me things are (as always) more complicated because of the Ehlers-Danlos, but if I can get past the Level 1 gatekeepers there are a few vascular specialists in the area who really know what they're doing, they just won't see me without the thumbs up from the Level 1 doctor
November 11, 2025 at 10:45 AM
yeah, with me things are (as always) more complicated because of the Ehlers-Danlos, but if I can get past the Level 1 gatekeepers there are a few vascular specialists in the area who really know what they're doing, they just won't see me without the thumbs up from the Level 1 doctor
So fucking infuriating!
November 11, 2025 at 10:43 AM
So fucking infuriating!
Like, you can read the actual bill! www.appropriations.senate.gov/imo/media/do...
www.appropriations.senate.gov
November 11, 2025 at 10:43 AM
Like, you can read the actual bill! www.appropriations.senate.gov/imo/media/do...
It's the same limit as before. The only change is in the amount of THC allowed in the final product that's produced by the raw material.
November 11, 2025 at 10:41 AM
It's the same limit as before. The only change is in the amount of THC allowed in the final product that's produced by the raw material.
--or we have to go with shunting, which has a much lower success rate and risk of long term complications/reversions, sigh.
November 11, 2025 at 10:37 AM
--or we have to go with shunting, which has a much lower success rate and risk of long term complications/reversions, sigh.
Yeah, at this point I'm pretty sure what's causing it (the collapsed jugular veins) and I'm just waiting for the appointment with the neurologist who can order the last confirmatory tests. Then it's just figuring out the root cause of the stenosis and whether we can treat that --
November 11, 2025 at 10:37 AM
Yeah, at this point I'm pretty sure what's causing it (the collapsed jugular veins) and I'm just waiting for the appointment with the neurologist who can order the last confirmatory tests. Then it's just figuring out the root cause of the stenosis and whether we can treat that --
I've been saying for years that I want to be able to hook my perception of pain up to my doctors' nocioception so they can understand my pain scale calibration and also get a sense of how impossible it is to do anything when it's a bad pain day
November 11, 2025 at 10:35 AM
I've been saying for years that I want to be able to hook my perception of pain up to my doctors' nocioception so they can understand my pain scale calibration and also get a sense of how impossible it is to do anything when it's a bad pain day
Again, CBD-only products are not affected by this change. It's only hemp-derived THC products that are affected.
November 11, 2025 at 10:31 AM
Again, CBD-only products are not affected by this change. It's only hemp-derived THC products that are affected.
Paywalled! But again, people are missing the fact that THC is still federally illegal and the producers of hemp-derived THC have been relying on an unintended consequence of a badly written bill.
November 11, 2025 at 10:31 AM
Paywalled! But again, people are missing the fact that THC is still federally illegal and the producers of hemp-derived THC have been relying on an unintended consequence of a badly written bill.
The legal distinction is biologically absolute nonsense and they should just fucking downschedule it already, but until then, there was so much abuse going on and the people producing the "legal" products from converted CBD or concentrated THC have been pulling Some Fuckshit.
November 11, 2025 at 10:26 AM
The legal distinction is biologically absolute nonsense and they should just fucking downschedule it already, but until then, there was so much abuse going on and the people producing the "legal" products from converted CBD or concentrated THC have been pulling Some Fuckshit.
--as long as it was concentrated from the tiny amount of THC allowed in "hemp" or converted into THC from the CBD present in hemp. (Again, scare quotes because there's no biological difference between hemp and marijuana except the THC content.)
November 11, 2025 at 10:23 AM
--as long as it was concentrated from the tiny amount of THC allowed in "hemp" or converted into THC from the CBD present in hemp. (Again, scare quotes because there's no biological difference between hemp and marijuana except the THC content.)
But yeah, it may make producing compliant CBD-based products slightly more complicated, but it does not ban them like people are saying! The primary purpose is to close the loophole that allows finished products to contain any amount of THC after production--
November 11, 2025 at 10:23 AM
But yeah, it may make producing compliant CBD-based products slightly more complicated, but it does not ban them like people are saying! The primary purpose is to close the loophole that allows finished products to contain any amount of THC after production--
I am still annoyed, because the actual solution is to just fucking downschedule marijuana already like Biden started trying to do almost as soon as he got into office, but all the stakeholders who had to weigh in are slow-walking it as essentially a pocket veto and it makes me so fucking mad
November 11, 2025 at 10:16 AM
I am still annoyed, because the actual solution is to just fucking downschedule marijuana already like Biden started trying to do almost as soon as he got into office, but all the stakeholders who had to weigh in are slow-walking it as essentially a pocket veto and it makes me so fucking mad
The whole fucking field of pain management is dismal and the way we demonize the only effective drugs for dealing with it is fucking depressing
November 11, 2025 at 10:14 AM
The whole fucking field of pain management is dismal and the way we demonize the only effective drugs for dealing with it is fucking depressing
It's awfully fun being a medical unicorn!
November 11, 2025 at 10:13 AM
It's awfully fun being a medical unicorn!
At least the aspirin I've added has calmed down the problem enough that I can take the every 12 hours instead of every 24 on really bad days. 🤞 this continues, sigh.
November 11, 2025 at 10:12 AM
At least the aspirin I've added has calmed down the problem enough that I can take the every 12 hours instead of every 24 on really bad days. 🤞 this continues, sigh.
Yeahhhhhh that'd definitely be a counterindication, lol. I had to cut back my dosage with the latest fuckery; I probably should have stopped it entirely but it's the ONE long-acting painkiller I can take and I have literally zero other options, sigh.
November 11, 2025 at 10:12 AM
Yeahhhhhh that'd definitely be a counterindication, lol. I had to cut back my dosage with the latest fuckery; I probably should have stopped it entirely but it's the ONE long-acting painkiller I can take and I have literally zero other options, sigh.
I am still absolutely fucking amazed we pulled it off!
November 11, 2025 at 10:09 AM
I am still absolutely fucking amazed we pulled it off!
(She also sometimes proactively prescribes me a higher number of pills and tells me to stop trying to tough it out and take them more often, heh.)
November 11, 2025 at 10:08 AM
(She also sometimes proactively prescribes me a higher number of pills and tells me to stop trying to tough it out and take them more often, heh.)
So I can message her and ask for an early refill if I injure myself badly enough to run through the whole bottle in the two weeks, because she knows I only take them if I really need them and so what would be a warning sign in someone else is just my joints being fucked up again, heh
November 11, 2025 at 10:06 AM
So I can message her and ask for an early refill if I injure myself badly enough to run through the whole bottle in the two weeks, because she knows I only take them if I really need them and so what would be a warning sign in someone else is just my joints being fucked up again, heh
She knows the problem with me is the drug metabolism and not me using my drugs irresponsibly! Sometimes a bottle of 30 oxycodone will keep me for 8 months and sometimes it'll last me two weeks; it all depends on how bad the pain is. And she knows I use different drugs for different pains!
November 11, 2025 at 10:02 AM
She knows the problem with me is the drug metabolism and not me using my drugs irresponsibly! Sometimes a bottle of 30 oxycodone will keep me for 8 months and sometimes it'll last me two weeks; it all depends on how bad the pain is. And she knows I use different drugs for different pains!
AMEN. I am so fucking thankful that my doctor fought like hell to get an exception to keep doing my pain management when she moved hospital systems and the new one hates GPs doing pain management. She said she didn't want to risk me getting an asshole who would ignore my special circumstances
November 11, 2025 at 10:02 AM
AMEN. I am so fucking thankful that my doctor fought like hell to get an exception to keep doing my pain management when she moved hospital systems and the new one hates GPs doing pain management. She said she didn't want to risk me getting an asshole who would ignore my special circumstances
It's overscheduled and the MME conversion is way too high, which can lead doctors to under-prescribe, but the extended release actually works on me for almost the entire duration and I don't get end-dose failure, plus I've been stable on this dose for 15+ years: no habituation whatsoever
November 11, 2025 at 9:56 AM
It's overscheduled and the MME conversion is way too high, which can lead doctors to under-prescribe, but the extended release actually works on me for almost the entire duration and I don't get end-dose failure, plus I've been stable on this dose for 15+ years: no habituation whatsoever
Anyway, you probably already know this, but: a lot of doctors are way more willing to prescribe tapentadol (Nucynta) because it's genuinely abuse resistant in a bunch of ways, and it's done me really well (until recently when it's been making the intercranial hypertension symptoms worse, sigh).
November 11, 2025 at 9:56 AM
Anyway, you probably already know this, but: a lot of doctors are way more willing to prescribe tapentadol (Nucynta) because it's genuinely abuse resistant in a bunch of ways, and it's done me really well (until recently when it's been making the intercranial hypertension symptoms worse, sigh).
I really hate that no one distinguishes between addiction and physical dependency at ALL. I am physically dependent on several of my drugs! I am *addicted* to nicotine. There is a massive fucking difference!
November 11, 2025 at 9:50 AM
I really hate that no one distinguishes between addiction and physical dependency at ALL. I am physically dependent on several of my drugs! I am *addicted* to nicotine. There is a massive fucking difference!