Disabled Doctor

What would happen if we stopped praising people for pushing through and started praising people for taking care of themselves and being mindful of the limits?

@LissaJStrange I’m so glad the lyrica helps! But that’s awful Covid seemed to trigger it for you

@DisabledDoctor I had shingles over my eye about 2 months after my first Covid infection in 2021. I’ve had TM ever since and all kinds of things trigger it, but it’s usually just a numb, tingly, or cold sensation instead of mind blowing pain thanks to lyrica.

Someone posted in a trigeminal neuralgia support group I’m in asking about whether or not their current COVID infection will flare their TN. There are over 70 comments and, so far, every single one I have read is someone saying COVID either triggered their TN for the first time (I.e., seemed to cause it) or that it flared them if they already had it. I feel like this should be talked about more. I’m somewhat confident covid was responsible for my TN (though hard to confirm due to other factors that year as it was early 2020 and I had a nose surgery and was facing intense discrimination while dealing with other health issues too). The worst part of it all is that having TN means that masking can be excruciating. It’s a no win situation. I wish more people were aware of or even discussed this risk though. TN is one of the most painful conditions someone can develop. And I can attest to the fact that, having endo and been hit by a car and just pains and injuries throughout my life, TN is by far the worst pain I’ve ever experienced. It had me considering that death would be easier on a regular basis. I wouldn’t wish it on anyone

@elle_carnitine @laenadalton Whoa. That’s wild but also I’m happy you haven’t!

@DisabledDoctor @laenadalton That’s just made me realise that I haven’t had an episode of glossopharyngeal neuralgia since the COVID infection that disabled me!

Being unable to afford needed medical care throughout much of grad school caused SO much damage to my body and so much stress in general. I’m finally at a place of making enough to cover my care and expenses and it’s wild how I can feel my body unwinding from that tension. It’s slow though. It still feels so uncertain. Oh the joys of self employment 🫠

I don’t care what anyone says. I truly believe that being financially stable eliminates 90% of people’s stress.

@commilingus It really is 😂

@DisabledDoctor This is like a restaurant staffer saying “every time I see you you’re hungry, like it’s part of your identity” because when you go to the restaurant you eat……

Had a provider say “wow. Being in pain is really wrapped up in your identity” yesterday. … I’m disabled AF and my face feels like it’s on FIRE on a regular basis (thanks, trigeminal neuralgia). What the fuck am I supposed to do? Pretend like everything is fine to make you more comfortable? No thanks 🫠

@spauldingtbear I usually tell them. But I’m reliant on this specific provider for treatment and likely unable to find another local one who will also provide care. My best option is to keep my mouth shut :/

@DisabledDoctor I've been quietly submissive to doctors for over 20 years now. I've been going with "If I'm a good girl, they'll help me." None of them treat me for pain anymore, even the PMs. I've become real since last November. Do you tell them what you think yet, or still suck it up?

@FundamentalLack @OliveSiffleur Was a she

@DisabledDoctor @OliveSiffleur Hook him up to this and then ask him about his identity

@julie_bush It really is a specific kind of hell. I’ve had a lot of different pains in my life from endo to migraines to injures from getting hit by cars and I would choose ANY of those over TN.

@DisabledDoctor i have/ had trigeminal neuralgia too. no one understands how miserable it is to feel like your face is numb / on fire / sciatica etc 🫂

@julie_bush @simcovidcity Can I ask how you got a prescriber to give you anktiva for TN??

@simcovidcity @DisabledDoctor i had it all the time for over a year before Anktiva. within 48 hours of the first dose, it disappeared. there have been a couple of times that i have felt “shadows” of it again, but i would call it a 1 out of 10 of what i had before. right now it’s a 0. focus on immune system!

@LeeLee1041697 Not a sir?

@DisabledDoctor This is why America was meant to escape religious prosecution Sir💯🧐✌️🙏🫶🙇😇🥰

What would happen if we stopped praising people for pushing through and started praising people for taking care of themselves and being mindful of the limits?

Just an FYI that Polyvagal theory isn’t scientifically well supported and a group of neuroscientists are now firmly arguing against it. I believe there was a major paper published on this at the end of last year and generally my review of the literature has found similar: little to no sound scientific basis :/

@LillyDeeeeee Checking out poly vagal theory and vagus nerve may be worth while as there similarities between long COVID and ME and COVID has been shown to effect HPA and vagus nerve.

My ME/CFS is connected to my gut. I know this. It perplexes me when I see other severe pwME that doesn't seem to be connected to the gut, at least not in the way mine is. I HAVE to know why. That's why I'm going to school & will research ME. I'm not after treatments that cover up

@heynavtoor The IDK fix seems appropriate. And would probably decrease reliance on AI while also training people to better use it which would be great. Where are you getting the 48% hallucination number for o4-mini? I cannot find that in the paper

🚨BREAKING: OpenAI published a paper proving that ChatGPT will always make things up. Not sometimes. Not until the next update. Always. They proved it with math. Even with perfect training data and unlimited computing power, AI models will still confidently tell you things that are completely false. This isn't a bug they're working on. It's baked into how these systems work at a fundamental level. And their own numbers are brutal. OpenAI's o1 reasoning model hallucinates 16% of the time. Their newer o3 model? 33%. Their newest o4-mini? 48%. Nearly half of what their most recent model tells you could be fabricated. The "smarter" models are actually getting worse at telling the truth. Here's why it can't be fixed. Language models work by predicting the next word based on probability. When they hit something uncertain, they don't pause. They don't flag it. They guess. And they guess with complete confidence, because that's exactly what they were trained to do. The researchers looked at the 10 biggest AI benchmarks used to measure how good these models are. 9 out of 10 give the same score for saying "I don't know" as for giving a completely wrong answer: zero points. The entire testing system literally punishes honesty and rewards guessing. So the AI learned the optimal strategy: always guess. Never admit uncertainty. Sound confident even when you're making it up. OpenAI's proposed fix? Have ChatGPT say "I don't know" when it's unsure. Their own math shows this would mean roughly 30% of your questions get no answer. Imagine asking ChatGPT something three times out of ten and getting "I'm not confident enough to respond." Users would leave overnight. So the fix exists, but it would kill the product. This isn't just OpenAI's problem. DeepMind and Tsinghua University independently reached the same conclusion. Three of the world's top AI labs, working separately, all agree: this is permanent. Every time ChatGPT gives you an answer, ask yourself: is this real, or is it just a confident guess?

@MaskedHottiee Thanks for sharing! I do IN ketamine, memantine, low dose tirzepatide, etc.. I think the memantine made a dent with my brain fog actually! It’s a drug for Alzheimer’s. Do you feel like any of the meds have helped you?

@DisabledDoctor Also going to restart micro dosing tirzepatide, hope that helps with inflammation, and I have been microdosing shrooms for a couple of weeks

Went to speech therapy today! Long Covid brain fog prepare to be vanquished!

@MaskedHottiee (I do hope it helps you though!)

@MaskedHottiee Would love to know what the end up doing that actually helps brain fog. Cognitive therapy is not helpful for brain fog, in my experience

In January of 2025 I opened my clinic after enduring years of abuse and discrimination as an employee and trainee in academic and clinical settings. March of 2026 and I have a full case load working with other disabled people and supporting them with accommodating themselves and accessing accommodations, whatever they choose to do, all while accommodating myself. Not happy about HOW I got here, but ecstatic about where I am.

I mean I do think it can negatively impact someone’s sex life, but my patients have shown me whether it’s spinal cord injury or ME (though not usually severe ME), they’re often having (or trying to have) orgasms somehow some way. Depends on the person and their health and sex drive and interest though

@DisabledDoctor I’m not saying they don’t, I’m just saying many don’t for that exact same reason.

For those of you on LDN, do you have a good sex life, adequate sex drive, intense orgasms etc. since starting the medication?

@seanstidston Many chronically ill and disabled people have a sex life… Masturbation is also a part of a healthy sex life

@DisabledDoctor With out sounding ignorant, I think many people who are on LDN probably don’t have a sex life at all if it’s for chronic illness.

@cfs_jo @ThisisMEtweety Oh well that’s interesting! Makes sense though if you felt better. Thank you for sharing

@DisabledDoctor @ThisisMEtweety I was going to say nothing changed for me, but thinking more deeply about it, I think it improved things a bit in that department because I felt better on it.