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queer cat lady / running social media since before it was "social media" and Trust & Safety since the dawn of time / do not cite the deep magic to me, I wrote it / no, I'm allergic to that, too
I have had SO MANY tests for this cluster of symptoms and it's coming up on a year since we started trying to figure it out. I have something that shows on a scan, even! It even theoretically explains all my symptoms better than all the other leading hypotheses! And yet. *sigh*
November 29, 2025 at 8:45 AM
I have had SO MANY tests for this cluster of symptoms and it's coming up on a year since we started trying to figure it out. I have something that shows on a scan, even! It even theoretically explains all my symptoms better than all the other leading hypotheses! And yet. *sigh*
Discontinued in the US, alas. We don't actually know what's causing the vomiting! I don't feel nausea and promethazine (which usually works on my nausea) doesn't stop it! I just randomly spend two to three hours a day throwing up with no warning unless I have a scopolamine patch on!
November 29, 2025 at 8:41 AM
Discontinued in the US, alas. We don't actually know what's causing the vomiting! I don't feel nausea and promethazine (which usually works on my nausea) doesn't stop it! I just randomly spend two to three hours a day throwing up with no warning unless I have a scopolamine patch on!
Oh man, being able to fly sounds so awesome
November 29, 2025 at 8:13 AM
Oh man, being able to fly sounds so awesome
That's a therapy I haven't come across in the literature yet, but I like the theory, I may give it a try
November 29, 2025 at 8:13 AM
That's a therapy I haven't come across in the literature yet, but I like the theory, I may give it a try
Yeah, I haven't hit anything I need them for yet but I know there's a lot more options now!
November 29, 2025 at 8:12 AM
Yeah, I haven't hit anything I need them for yet but I know there's a lot more options now!
Sad high five of solidarity
November 29, 2025 at 8:05 AM
Sad high five of solidarity
It's a tie between "pampered and beloved housecat" and "octopus", because the cat lives longer but the octopus has no bones and "no bones" is very appealing sometimes
November 29, 2025 at 8:05 AM
It's a tie between "pampered and beloved housecat" and "octopus", because the cat lives longer but the octopus has no bones and "no bones" is very appealing sometimes
Right?! Like, a lot of the biohacker people messing around with n=1 experiments with research chemicals are not exactly what I'd call responsible experimenters, but there's just so much neat stuff we can measure and tweak now and it's fascinating!
November 29, 2025 at 8:04 AM
Right?! Like, a lot of the biohacker people messing around with n=1 experiments with research chemicals are not exactly what I'd call responsible experimenters, but there's just so much neat stuff we can measure and tweak now and it's fascinating!
YES, fucking SERIOUSLY, like I have a perfect argument against intelligent design and it's called "new doctors look at my medical records and make The Face"
November 29, 2025 at 8:01 AM
YES, fucking SERIOUSLY, like I have a perfect argument against intelligent design and it's called "new doctors look at my medical records and make The Face"
I basically think I should be eligible for a full refund on embodiment under the lemon laws, because I got an absolutely horribly manufactured meatsack, dammit
November 29, 2025 at 8:00 AM
I basically think I should be eligible for a full refund on embodiment under the lemon laws, because I got an absolutely horribly manufactured meatsack, dammit
Plus ADHD, a truly epic non24 hour sleep disorder, another separate *unrelated* genetic disorder of the collagen, the weird drug metabolism, and currently some bizarre fuckshit we can't solve but involves my internal cervical jugular veins having collapsed
November 29, 2025 at 7:59 AM
Plus ADHD, a truly epic non24 hour sleep disorder, another separate *unrelated* genetic disorder of the collagen, the weird drug metabolism, and currently some bizarre fuckshit we can't solve but involves my internal cervical jugular veins having collapsed
I have the Terrible Trifecta (they come together enough my specialist thinks they're all the same thing) of POTS, MCAS, and Ehlers Danlos, which means my body doesn't make collagen correctly and I can dislocate nearly any joint in my body just by breathing wrong sometimes, whee!
November 29, 2025 at 7:57 AM
I have the Terrible Trifecta (they come together enough my specialist thinks they're all the same thing) of POTS, MCAS, and Ehlers Danlos, which means my body doesn't make collagen correctly and I can dislocate nearly any joint in my body just by breathing wrong sometimes, whee!
There's a reason why my doctor does bloodwork every few months on me, heh. I keep saying I wish I could just plug me into a diagnostic computer and get a readout of which things are low like you can with a car!
November 29, 2025 at 7:55 AM
There's a reason why my doctor does bloodwork every few months on me, heh. I keep saying I wish I could just plug me into a diagnostic computer and get a readout of which things are low like you can with a car!
Adhesive reactions are so common! And SO ANNOYING
November 29, 2025 at 7:53 AM
Adhesive reactions are so common! And SO ANNOYING
I mean, mood. I, too, occasionally would like to go on strike from embodiment (I'm glad it has gotten its shit together!)
November 29, 2025 at 7:48 AM
I mean, mood. I, too, occasionally would like to go on strike from embodiment (I'm glad it has gotten its shit together!)
Fucking bodies, man! I have POTS so I have to drink electrolytes like crazy (my target is 10-12 *grams* of sodium a day and it is SO HARD to achieve) and I have to be so careful
November 29, 2025 at 7:46 AM
Fucking bodies, man! I have POTS so I have to drink electrolytes like crazy (my target is 10-12 *grams* of sodium a day and it is SO HARD to achieve) and I have to be so careful
I'm lucky I'm the kind of complex patient who finds it all fascinating and loves to learn more, heh
November 29, 2025 at 7:44 AM
I'm lucky I'm the kind of complex patient who finds it all fascinating and loves to learn more, heh
Surely just HAVING them should count for partial credit!
November 29, 2025 at 7:43 AM
Surely just HAVING them should count for partial credit!
oh yeah I don't know what THAT'S like or anything, lol. (My household keeps rediscovering the basic scientific principle that the drugs only work if you take them, which I think is very rude of them)
November 29, 2025 at 7:42 AM
oh yeah I don't know what THAT'S like or anything, lol. (My household keeps rediscovering the basic scientific principle that the drugs only work if you take them, which I think is very rude of them)
I am SO FUCKING FASCINATED by all this shit, seriously. I'm so thankful my doctor also finds it fascinating and loves the research I bring her!
November 29, 2025 at 7:40 AM
I am SO FUCKING FASCINATED by all this shit, seriously. I'm so thankful my doctor also finds it fascinating and loves the research I bring her!
(I'm using Vyvanse instead now because it has better symptom control for the actual ADHD, but I'm also taking a different NDRI -- Sunosi -- off-label for something else and it has similar effects, but not as strong a fix.)
November 29, 2025 at 7:39 AM
(I'm using Vyvanse instead now because it has better symptom control for the actual ADHD, but I'm also taking a different NDRI -- Sunosi -- off-label for something else and it has similar effects, but not as strong a fix.)
XR methylphenidate makes me stop sleeping entirely but IR methylphenidate at exactly the right intervals completely and effortlessly cures my lifelong non24 hour sleep disorder. The brain is so fucking weird.
November 29, 2025 at 7:37 AM
XR methylphenidate makes me stop sleeping entirely but IR methylphenidate at exactly the right intervals completely and effortlessly cures my lifelong non24 hour sleep disorder. The brain is so fucking weird.
(So in effect, the reason you're feeling like the adderall doesn't work as well might be because you're not getting the correct timing on it)
November 29, 2025 at 7:36 AM
(So in effect, the reason you're feeling like the adderall doesn't work as well might be because you're not getting the correct timing on it)
Yeah, I was thinking that your schedule for the immediate release adderall may be wrong now because of the GLP!
November 29, 2025 at 7:34 AM
Yeah, I was thinking that your schedule for the immediate release adderall may be wrong now because of the GLP!
oh heyyyyyyy speaking of "me talking about my weird medical shit", if you have horrible allergies that act weirdly maybe give synecdochic.dreamwidth.org/793547.html a read and see if any of it sounds familiar
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November 29, 2025 at 7:33 AM
oh heyyyyyyy speaking of "me talking about my weird medical shit", if you have horrible allergies that act weirdly maybe give synecdochic.dreamwidth.org/793547.html a read and see if any of it sounds familiar