Podcasts about ehlers danlos

To have Dr. Morse answer a question, visit: https://drmorses.tv/ask/ All of Dr. Morse's and his son's websites under one roof: https://handcrafted.health/ Facebook Page: https://www.facebook.com/handcrafted.health 00:00:00 - Intro - Diet - Spirituality 00:07:07 - Ehlers-Danlos Syndromes (EDS) - Acid Reflux - Sleep Apnea - Premature Ventricular Contractions (PVCs) - Premature Atrial Contractions (PACs) - POTS - Lax (Painful Joints) - Thoracic Outlet  syndrome (TOS) - Mast Cell Activation Syndrome (MCAS) 00:27:49 - Chronic Strep Throat 00:42:25 - AERD - Asthma - Chronic Sinusitis with Nasal Polyps - Bronchitis  - Bronchiectasis 01:08:42 - Depersonalization/Derealization - Social Anxiety - Shyness - Low Self-Esteem  01:31:27 - Parkinson's Disease - Breast Cancer - Hashimoto's Disease 00:07:07 - Ehlers-Danlos Syndromes (EDS) - Acid Reflux - Sleep Apnea - Premature Ventricular Contractions (PVCs) - Premature Atrial Contractions (PACs) - POTS - Lax (Painful Joints) - Thoracic Outlet  syndrome (TOS) - Mast Cell Activation Syndrome (MCAS) The breathing and heart issues are scary. 00:27:49 - Chronic Strep Throat After all the antibiotics, I had a really bad flare-up and struggle with fatigue. 00:42:25 - AERD - Asthma - Chronic Sinusitis with Nasal Polyps - Bronchitis  - Bronchiectasis I am currently taking steroid medications. 01:08:42 - Depersonalization/Derealization - Social Anxiety - Shyness - Low Self-Esteem  I have also experienced depression, paranoia, fear, intrusive thoughts, chronic fatigue, and irritability—the whole nine yards. 01:31:27 - Parkinson's Disease - Breast Cancer - Hashimoto's Disease I want to start your program. I didn't do chemo or radiation.

Most people with EDS or HSD have been told to "exercise more," "eat better," and "sleep on a schedule," usually by someone who has never tried to do any of those things in a hypermobile, pain-flaring, dysautonomic body. This episode is different. Dr. Linda Bluestein and Dr. Dacre Knight break down the foundational layer of the MENS PMMS treatment algorithm, a structured framework built specifically for the complexity of Ehlers-Danlos syndromes and hypermobility spectrum disorders. MENS stands for Movement, Education, Nutrition, and Sleep. This conversation goes far beyond surface-level advice to explain what each category actually means when your connective tissue, nervous system, and autonomic function are all working against you at once. You will learn why standard physical therapy can set EDS patients back and what to look for in a provider who actually understands joint protection. You will understand central sensitization at a biological level, not just as a buzzword, and why reframing pain as a nervous system state rather than a structural inevitability changes everything. You will hear why nutrition conversations for the EDS population need to start with GI dysfunction and malabsorption, not calories and BMI. And you will finally get a clear explanation of why pain and poor sleep feed each other in a vicious cycle, and what interrupts it. Whether you are a patient who has heard "your labs are normal" one too many times, or a clinician building a practice that actually serves this community, this episode gives you a concrete starting point. The body you are working with is not broken. It just needs a different playbook. Takeaways: Why most PT makes EDS worse before it makes it better, and the "slow and low" approach that actually builds joint stability without triggering a flare. The neuroscience of "no plastic" pain. Central sensitization is not in your head. Understanding how the nervous system learns to amplify pain is the first step toward teaching it something different. Nutrition beyond BMI. In EDS and HSD, postprandial distress, malabsorption, and GI dysmotility are often the bigger drivers of health outcomes than anything showing up on a standard nutrition screening. The pain-insomnia trap. Pain activates your sympathetic nervous system. A revved-up sympathetic nervous system blocks restorative sleep. Poor sleep amplifies pain sensitivity. Here is how to break the cycle. Motion is lotion, done right. Low-impact, recumbent movement is not a consolation prize. It is one of the most effective tools for stabilizing autonomic function in this population. Go AquaTru.com now for 20% off (your purifier) using promo code BENDY. Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

Most people with EDS or HSD have been told to "exercise more," "eat better," and "sleep on a schedule," usually by someone who has never tried to do any of those things in a hypermobile, pain-flaring, dysautonomic body. This episode is different. Dr. Linda Bluestein and Dr. Dacre Knight break down the foundational layer of the MENS PMMS treatment algorithm, a structured framework built specifically for the complexity of Ehlers-Danlos syndromes and hypermobility spectrum disorders. MENS stands for Movement, Education, Nutrition, and Sleep. This conversation goes far beyond surface-level advice to explain what each category actually means when your connective tissue, nervous system, and autonomic function are all working against you at once. You will learn why standard physical therapy can set EDS patients back and what to look for in a provider who actually understands joint protection. You will understand central sensitization at a biological level, not just as a buzzword, and why reframing pain as a nervous system state rather than a structural inevitability changes everything. You will hear why nutrition conversations for the EDS population need to start with GI dysfunction and malabsorption, not calories and BMI. And you will finally get a clear explanation of why pain and poor sleep feed each other in a vicious cycle, and what interrupts it. Whether you are a patient who has heard "your labs are normal" one too many times, or a clinician building a practice that actually serves this community, this episode gives you a concrete starting point. The body you are working with is not broken. It just needs a different playbook. Takeaways: Why most PT makes EDS worse before it makes it better, and the "slow and low" approach that actually builds joint stability without triggering a flare. The neuroscience of "no plastic" pain. Central sensitization is not in your head. Understanding how the nervous system learns to amplify pain is the first step toward teaching it something different. Nutrition beyond BMI. In EDS and HSD, postprandial distress, malabsorption, and GI dysmotility are often the bigger drivers of health outcomes than anything showing up on a standard nutrition screening. The pain-insomnia trap. Pain activates your sympathetic nervous system. A revved-up sympathetic nervous system blocks restorative sleep. Poor sleep amplifies pain sensitivity. Here is how to break the cycle. Motion is lotion, done right. Low-impact, recumbent movement is not a consolation prize. It is one of the most effective tools for stabilizing autonomic function in this population. Find the episode transcript here. Go AquaTru.com now for 20% off (your purifier) using promo code BENDY. Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

Brett records an episode without Christina and Jeff and chats with Melissa Davis (The Mac Mommy) about her start as a mommy blogger and longtime Mac podcaster, her tech-support work, and the strange lack of closure when online friends disappear. They trade mental-health and chronic-illness updates, Adderall vs. Vyvanse, difficulty finding curious doctors, and being labeled “worried well.” Don’t worry, they nerd out on mechanical keyboards, Karabiner, and remapping keys. GrAPPtitudes include Bartender 6 Pro, Sortio for AI tagging, Sketch Party TV, and Karabiner. Sponsor OneSkin improves your skincare routine with science-backed skin care products. With over 10,000 five-star reviews and validation from clinical studies, OneSkin has made a name for itself in the skincare industry. If you’re interested in trying OneSkin for yourself, you can get 15% off your order with the code OVERTIRED at oneskin.co/OVERTIRED. Chapters 00:00 Meet Melissa Davis 00:56 Early Podcast Days 02:20 Tech Support Seniors 05:52 Digital Legacy Work 06:50 Sponsor: OneSkin 08:14 Mental Health Check In 08:34 Insomnia And Focus 13:19 Doing Time Tracker 16:04 Suspenders And Stenosis 20:18 Mobility And Home Hacks 22:10 Melissa Health Update 23:25 ADHD Meds And Mutations 25:25 Curious Doctors Matter 27:59 Vyvanse Vs Adderall 30:26 Tracking Mood With Data 32:27 Cane And Somatic Therapy 36:09 Somatics For EDS 36:50 Yoga Modifications 38:19 Polycystic Liver Shock 39:20 Fatphobia In Healthcare 40:56 Pole Dancing Reality Check 41:55 Mechanical Keyboard ASMR 45:56 Nail Art And Picking 49:09 Keyboard Layout Rabbit Hole 01:00:59 Shortcuts And Muscle Memory 01:03:12 GrAPPtitude App Picks 01:14:07 Karabiner Power Tips 01:17:30 Wrap Up And Thanks Show Links hEDS Doing Timing Royal Kludge Keyboard Gamakey Silent Linear Switches EPOMAKER Switch Benefit Section EPOMAKER AegisSil Keycaps Set SketchParty TV Karabiner Sortio Bartender Pro Day One Join the Conversation Merch Come chat on Discord! Twitter/ovrtrd Instagram/ovrtrd Youtube Get the Newsletter Thanks! You’re downloading today’s show from CacheFly’s network BackBeat Media Podcast Network Check out more episodes at overtiredpod.com and subscribe on Apple Podcasts, Spotify, or your favorite podcast app. Find Brett as @ttscoff, Christina as @film_girl, Jeff as @jsguntzel, and follow Overtired at @ovrtrd on Twitter. Transcript Nails and Keys with Melissa Davis (The Mac Mommy) [00:00:00] Meet Melissa Davis Brett: Hey, this is Brett Terpstra. I am without my usual cohorts, Christina and Jeff. Um, so I, I wanted to, you know, get a, get an episode out for all of you listeners, and I reached out to Melissa Davis, known as The Mac Mommy. Um, I don’t, I, I don’t know if they’re still known as The Mac Mommy, but in m- in my lifetime they have been. Um, Melissa, why don’t you introduce yourself, let people know, like, M-Ma- long time, like Mac personality, podcaster. Tell us where you came from. Melissa: Where did I come from? Outer space. Uh, I came from being a mom. I, I, I will admit, this is hard to admit, But I will admit I started out as a mommy blogger. That’s, like, kind of a bad word nowadays. Brett: back, back, yeah, this is way Back when Melissa: [00:01:00] Yeah. Early Podcast Days Melissa: so we’re talking, like… Well, my oldest is gonna be 20, Brett. My oldest is gonna be 20 this summer. End of, end of June he’ll be 20 years old. So that’s about how long I’ve been doing podcasting. I mean, I started, I started, like, when… Well, you know what? I started listening to Adam Christianson’s The MacCast Brett: But you know what? I started Sure. Like one of the very first podcasts, Yeah. Melissa: still, I still listen to him on the Mac Geek Gab. Like, his voice is just so soothing to me. I used to… Like, that was the f- Back when I had, I had, I remember I had, like, an old G4, uh, Quicksilver Mac, and in the stinky little back room of our old house. And I used to, I used to download the podcasts, burn them on a CD, put them in my Walkman, ’cause I didn’t have an iPod yet at the time. I wasn’t that… I was never really that cutting edge. And I’d burn them on a CD, I’d put the CD in my Walkman, and then I would sit and nurse, I would nurse my baby. I, [00:02:00] and I would have to tuck the, uh, the headphones, you know, I’d have the ear- the, the wired, kinda like I have now, uh, and tuck it behind my back, like, behind my shoulder, because otherwise he’d, like, yank on the cord. And I would just listen to podcasts while I nursed. And I… And then, uh, then I met Victor Cajiao, and I started just kind of being, like, a serial podcaster, showing up here and there, and then it just kinda grew from there. Tech Support Seniors Melissa: Um, and I do… So I do tech support. I’m an IT tech s- tech support person. I… People call me their computer guru. I mostly work with, uh, the senior population, our, our vintage people, which I, I’m slowly becoming one of them. We’re all, we’re all gonna go that way. Brett: I feel like anyone who does Mac tech support deals with probably an, a, a population that skews older. Melissa: Mm-hmm. Mm-hmm. Yeah, it’s actually, it’s actually more– I will say it’s actually more difficult to work with somebody younger. Like, especially people my age or people [00:03:00] that are like, say, in their sixties I consider pretty young, 70 even. Uh, yeah, so but it’s, you know, the people are so, so interesting. You can learn so much. I love working with this population because they’re like encyclopedias, and the stories they tell you and the things you learn, it’s pretty amazing. And I could just, I could just spend– I have actually spent all day with some of them. Some of us just have really great chemistry and, you know, it’s… They– I, I’m also– I have ADHD, that’s no secret. And I think when you get older, um, not– it doesn’t affect everybody, but I do see a lot of what could be either they, they have ADHD or it’s like a– Brett: they have Melissa: of creeps in and it’s just a natural process of aging, cognitive decline. So, yep. Brett: have a lot of patience. Sure. S- some of my, some of my most interesting relationships over the last 10 years have been with, uh, Mac users in their late 70s, [00:04:00] 80s. And, uh, like they’ve been– They’re very– Like, they’re definitely… The people that I’ve known have been technically capable and very interested in learning. That’s why they follow me. That’s how I meet them, right? They’re like, they read my blog, which is just all nerd stuff. And, and so they’re, they’re technically competent, and they’re doing things that I can only aspire to be doing in my 70s and 80s. Um, I had a guy who was writing his memoirs at, in between like mountain bike rides. And so here’s the thing, though, is when you, when you know someone online and they’re in their 80s and you stop hearing from them for a Melissa: Yes. Yes. Brett: you have to assume that they have passed on. and that is sad, and you never really get any closure because you don’t know their friends or family. You [00:05:00] never get like a notice, an obituary. You don’t, you don’t know where these people go, um, and you don’t know how to check in on them once your normal channels of communication are severed. Melissa: Yeah, we’re at that age where we probably start reading the obituaries. Like, I haven’t heard from so-and-so in a while. Let me check the obits." Brett: I had, I had– Before NVUltra went on for, what’s it, like five years now, uh, without a release, um, I had a project called BitWriter with David Halter. And Melissa: remember you mentioning that, yeah. Yeah, and you wondered. Mm-hmm. Brett: he stopped responding. Melissa: you find out any at all? Any, Any, concrete… Brett: Nothing. I have put feelers out everywhere I can think of. I have no idea what happened to him. Melissa: went Richard Simmons, huh? Brett: yeah. Yeah. With less Melissa: No contact. No contact. Aw. Digital Legacy Work Melissa: I, I’m lucky that, uh, in my line of [00:06:00] work, I do typically hear from the family if they’ve passed on, because I form kind of a bond with a lot of people. I, I typically don’t lose clients unless they die, so… Brett: and you have some, like, in real life connections to Melissa: Oh, yeah. Yeah, I do, I do both. I do… I have some clients where I’ve never met them in person, I’ve only ever done remote. Uh, and then, but most of my clients are, are local, the majority of them. But I, I still s- see them remotely too, so yeah. I’ve, I’ve actually been hired by some people, um, mostly I’ve had two male clients who they got a terminal illness, they knew they were terminal, and they followed me online and they pretty much hired me to take care of their surviving spouse. So that, that was… that’s a difficult thing, but I’m just honored that they chose me to, to help them out with that. So I’ve kind of been a bit of a digital undertaker in that regard. Sponsor: OneSkin Christina: I want to take a moment to share something that has significantly improved my skincare routine, OneSkin. [00:07:00] So we all have those days when our skin doesn’t feel its best, and I’ve certainly been in that boat, especially recovering from surgery. And I was tired of navigating through endless products that promised results, but often fell short. And that’s when I discovered OneSkin. It was founded by scientists dedicated to longevity, and this brand stands out for its commitment to real science over marketing hype. They tackle the fundamental question of how to actually slow down skin aging rather than just masking it. And their groundbreaking ingredient is, uh, ZeroS01, and it’s a proprietary peptide designed to help deactivate the damaged cells that contribute to aging skin. Since incorporating OneSkin into my routine, I’ve actually been noticing some improvements. My skin feels smoother. It looks more vibrant. Um, it’s definitely more moisturized, and so this is benefiting from its focus on supporting collagen and strengthening the skin barrier. With over 10,000 five-star reviews and validation from clinical studies, OneSkin has made a name for itself in the skincare industry. If [00:08:00] you’re interested in trying OneSkin for yourself, you can get 15% off your order with the code OVERTIRED at oneskin.co/overtired. That’s 15% off at oneskin.co/overtired using the code OVERTIRED. Thank you for supporting our show by checking them out Mental Health Check In Brett: Um, so do you wanna do a mental health Melissa: Sure. Brett: I, I know, I know you’ve listened to the show before. I know you know how this works. Melissa: how this works. Brett: Would you like to start? Melissa: I think I would like to hear you start, and then I’ll, I’ll add on Brett: that sounds good. Insomnia And Focus Brett: Um, so sleep continues to be a major issue for me. Um, I actually for four days in a row last week, I got eight hours of sleep a night, which was insane. I felt so good. Um- The first night… So I take [00:09:00] Lamictal for bipolar, and if I miss my evening dose, I crash and I sleep in the next morning, and I sleep soundly. Like, it’s the best sleep I can get. And then I wake up and all of a sudden the withdrawal kicks in, and then I’m shaky and dizzy for half an hour after I take the dose. Um, but that’s after, like, a solid night of sleep, and it never works two nights in a row. And, like, I’ve tried, like, maybe if I take Lamictal in the mornings instead of the evenings, maybe I’ll sleep through the night. It doesn’t work after that first missed dose. Um, but then I just, without making any changes in my lifestyle, started sleeping, and I thought finally after, like, two years of insomnia, I had turned a corner, because I can’t remember the last time I got eight hours of sleep for more than two nights in a [00:10:00] row. And then it ended, and then I was up. I’ve been up since 2:30 today. Melissa: I wondered, yep. Brett: I mean, I went to bed at 8:00, so that’s still nine, 10, 11, 12, 11, Melissa: I actually dozed off on the couch around 8:30. Like, if only I could just be in my bed right now, just be, like, transported. Yeah. Oh. Brett: Oh, I, I wish. If I could go back to bed… Like, sometimes I’ll, I’ll lay back down around 7:00 or 8:00 and get, like, another half hour of sleep, but it’s really that, like, uninterrupted block of deep sleep that I need, not… I take naps during the day, and I can usually fall asleep for half an hour, um, given that I’m usually functioning on five hours of sleep anyway. But anyway, um, I– That, that’s just kind of par for the course for me, so, like, any, any of our listeners know that that’s gonna be the first thing I report. Melissa: are you, [00:11:00] like, kinda competing? Like, are you trying to get eight hours because that’s what’s prescribed? Have you ever thought about Brett: be- actually, what works eight and a half, like I’ve, I’ve… Back when I had the option to sleep more than five hours, like, I did a lot of kind of experimentation and Melissa: know where your sweet spot is. Brett: Well, it… See, the sweet pot- spot changes as you age, though, and you need less sleep as you get older. So, so I can’t say for sure that eight and a half hours is still my sweet spot. Um, and I think honestly, if I can sleep seven hours, I feel pretty good, and I consider seven hours a good night’s sleep. Melissa: Yeah, ’cause mine’s like between four and six. Brett: really? Yeah. See, Melissa: feel Brett: I don’t function well. Oh, I don’t function well on anything less than seven hours. Melissa: I just have a love-hate relationship with sleep. I just don’t– I just hate to sleep. I just would rather be doing other things. Life is [00:12:00] just too interesting. Brett: I get that. I– get that. I– as someone who’s bipolar and has had like manic episodes where I’m up for five days straight, like I, I love not sleeping. Um, w- when, when I have the mania to give me energy and back it up. It’s when I’m just dragging all day and feel like a zombie. The thing– The, the plus side to it is the more tired I am, up to a certain point, the better I can focus. Like my brain slows down and it’s really easy for me to get into hyperfocus. And like most mornings I’m up at, you know, 2:30, 3:00 and I just start coding. And I can not only hyperfocus, but I can switch focus between three or four different projects like simultaneously. I hit compile on one, I move on to the next one, and I can rotate [00:13:00] through them and like keep track of all of it. And then right around 10:00 AM, my ability to do that ends and suddenly I like flip to a project and I cannot for the life of me remember what I was doing, which is why I’ve spent my life building note-taking apps and, and time tracking tools. Melissa: Yep, same thing. Doing Time Tracker Brett: dude, h- d- I don’t… You might not be familiar with my project Doing. Melissa: N-no, but I– you alluded to something. that’s not what you’re working on with Dan though, is it? Brett: No, no, that’s gonna be Melissa: Dan on that too. I, I, don’t know what it is yet, but yeah, I’m, I’m Brett: Oh, it’s… Yeah, it’s gonna be cool. Melissa: that’s so exciting. Brett: no, Doing is a command line tool where you can type things like, “Doing now podcasting with Melissa,” and it starts a timer for like what I’m doing now, and then I can ask it if I leave and come back, I can say, “What was I doing?” And it’ll tell me, [00:14:00] “You’re podcasting with Melissa.” Obviously, that’s a weird example ’cause I’m not gonna leave in the middle of this. But then it can give you like totals, time, tag-based time totals, uh, for your week and everything. It can show you like what you finished yesterday. Um, it’s not so much a task tracking app as it is a tool for keeping track of what you’re doing in the moment. Um, for, for people like me who switch between four projects at once, it’s really handy. And some guy, some fucking guy Melissa: Some fucking guy. Brett: it, rewrote it in Rust, and it is really good. it is really good. Uh, he like, I- Oh yeah, I use Melissa: Okay, ’cause Brett: This is, this is separate. this is this is a little more ‘ intentional than Timing. Um, I use both. They kind of work together, and Doing can actually import Timing’s JSON exports. So you can turn your, you can turn [00:15:00] all your Timing data into command line, uh, readable Doing files. Um, but anyway, this guy rewrote it in Rust with my permission, and he gave me full credit on the page. And I think I’m switching ’cause Doing is written in Ruby, and Ruby is slow, and Rust is fast. And like my Doing file where it stores all of my current projects, like my Doing items, gets so big that it can take Doing like up to five seconds to respond when I ask it, “What was I doing today?” Which is five seconds is a long time on the command line. Um, and his Melissa: pretty instantaneous. Brett: his version is like 100 milliseconds. Boom. But anyway, Melissa: It’s almost like you built your own little AI thing. Like, what was I doing? What Brett: kinda, kinda, yeah. Melissa: you doing, Dave? Brett: This is, this [00:16:00] was built long before AI was a common thing, but the other thing that’s contributing to my mental health Suspenders And Stenosis Brett: is suspenders. Melissa: Ah, yes. Brett: So I have I have gained 100 pounds, um, not, n-not of my own choice, but like I had rapid weight gain and I recently got a stenosis diagnosis, which I hate the Melissa: telling you, I’m telling you, we’re like 23 and me here. I’ve got that too. Brett: apparently during one of my, like when I gained 50 pounds in like six weeks, my body was looking for places to store all the new fat and decided my spine might be a good place for that. Um, so I have fat in my spine and I have degrading discs. This is separate from my love of suspenders, so I’ll get back to [00:17:00] that. I, um, Melissa: Wait till you get it in your eyeballs. Brett: Oh, for real? Melissa: Yeah, you can have… I have, um, what’s it called? Cholesterol. Yeah, if you look at your eyes really close, if you see like a white kind of w- ridge around your irises, that’s cholesterol. Brett: Oh, wow. Yeah, I hope, I hope that hasn’t happened yet, but who knows? Um, Melissa: Brings out Brett: I– So I have all this, I have all this extra weight and I had a lot of trouble with belts. A, belts hurt ’cause they dig into my, my gut, and they don’t really work. I, every, every time I stood up, my butt crack showed and I had to like wiggle my pants up. And then I I tried a pair of suspenders and it was like a l- a switch had been flipped. All of a sudden my pants just stayed up without any constriction around my waist, just like they just stayed with me wherever I went. And now I can, [00:18:00] I can tuck my shirts in and it actually looks kinda cool when you got the suspenders look going on. Which means, so like for a long time I only wore one brand of shirt, um, and because they, it was, it fit my belly and it was long enough and like it wasn’t, wasn’t baggy around the top and didn’t hang off my belly like a muumuu. Melissa: Mm-hmm, Brett: And like, so I, I, I only wore this brand of shirt and I own like 15 of them, and I would just cycle through Melissa: dresses, they’re just your Walmart $10 cotton tank dress. Love it. Brett: Yeah. But now that I can tuck my shirts in and feel okay about it, I can buy those extra large nerd shirts, ones with funny slogans and stuff on them. And normally those would hang straight down off my belly, and I hate the way that looks. But now I can tuck those in, which means I can get back to wearing funny, [00:19:00] ironic T-shirts, and it, it’s like opening up a whole new world of possibilities Melissa: That is a bonus for mental health. Brett: every day now I put on my suspenders and it makes me happy. Um, Melissa: wonderful. It’s almost like a, like a mobility aid. Brett: Kinda, yeah. Melissa: yeah. Brett: of, I– So I, I have a monopod, um, like a tripod that folds up into a walking stick, and it’s nice and light and it is an adjustable height ’cause it’s designed to be used as a camera tripod. Um, and I’ve started walking with it Melissa: yeah. kinda like you’re Brett: I c- yeah. Yeah. Like one of my fat friends has s- literal like ski poles. They’re like half height ski poles and they walk with them and it helps them a ton, and I Melissa: Yeah, hikers use those. Brett: try that out. But a walking stick [00:20:00] really does help with my stenosis, but I can still, even with a stick, I can only walk for about five minutes, which is about .3, Melissa: Yeah. Brett: 3, .3 miles. Um, and then I have to stop and sit, and it’s been a real pain, literally. Mobility And Home Hacks Melissa: And is standing difficult, too? Brett: standing is worse than walking. Melissa: thing, yeah. Standing’s worse. Brett: Yeah. Like if I am in the kitchen and I’m at the stove cooking, before the onions start to brown, I have to sit Melissa: Yeah. Yep. Brett: Uh, so we now have a stool in our kitchen, Melissa: Do you have one in the shower? Brett: yes. Well, our shower, our shower has a nice, like the back of the tub is a seat. Melissa: Oh, okay. Yeah. Brett: I don’t know if this house was designed by old people or not, but, um, but it’s certainly everything is relatively [00:21:00] accessible in that way. Um, but the stool in the kitchen means I can cook dinner. Emptying the dishwasher is the worst for me. That just like bending over, picking stuff up, and then just moving back and forth, like the five feet across our kitchen. My– I, it takes me three stops, three rests to get a dishwasher emptied. Um, and then I’m kind of ruined after that. I hate it. And I hate that I Melissa: stress mat? Brett: What’s that? Oh, you mean Melissa: mat to stand on? Gotta get, gotta Brett: think that would help? Melissa: Oh, yeah. Yeah, I have Brett: used to have one Melissa: and one in front of the kitchen, and I don’t even, I don’t even, do the cooking. Brett: Ha. I used to, I used to have one of those in front of the stove when I w- when I didn’t have pain, but just because I was really getting into cooking and I was spending a lot of time, and I was starting to feel it in my knees. Um, yeah, maybe I should do Melissa: I think it’s a fatigue [00:22:00] mat, I think they call it. Brett: Yeah. Melissa: Yeah, Brett: That sounds Melissa: plus they look cool if you get little designs on them and stuff. Yeah. Oh, we could spend the day talking about just mobility aids and ergonomics and all that kind of stuff. Melissa Health Update Brett: Well, it’s your turn. Talk about whatever you like. Melissa: Yeah, you give me some ideas to talk about. Um, yeah, I struggle with a lot of the same things that you do. Um, I’m always like kinda comparing notes every time you post something. I’m like, "Oh No, ‘Cause you talked about Have you … You haven’t started the injections yet, have you? Brett: No, and they just delayed those. I don’t get them until like June 20th or something. Melissa: nervous about those for you, because I’ve had those and I’ve decided to just swear off them, so I’ll just kinda give you just a heads-up. I mean, it does raise your blood sugar, so that’s not great, and, um, it can give you the roid rage, kinda make you angry, so that’s something to watch out for, and more weight gain, so …But it’s like one of those things where you just have to kinda try [00:23:00] it and see if it works, because if it does work, then you could be more mobile and then maybe drop a few pounds and get some of that weight off of your spine. But if it doesn’t work, just know that that can happen, Brett: my doctor did not mention any of those side effects, so good to Melissa: Yeah. Yeah. It’s, it’s the chronic life, so that’s, that’s what, that’s what, uh, affects my mental health, so I’m, I’m really good at faking it. I am actually … I will say I’m actually feeling a little bit more even. ADHD Meds And Mutations Melissa: I’m on, uh … I love when you talk about different prescriptions and stuff. Uh, I just mentioned, so I’m taking Adderall. That is, ugh, it’s a mixed bag. Um, I wanted to ask you about Vyvanse, cause that’s the next thing for me, but it’s, like, super expensive, so I’m trying to make Adderall work as best I can, but I’m, I’m in the process of playing with the dosage. But I think she told me, like, the highest was 30. The thing is, uh, I’ve had genetic testing done, and [00:24:00] I have this condit- not a condition, but it’s a I’m a mutant. It’s a genetic mutation called, it’s, it’s just initials. It’s MTHFR, lovingly known as Brett: you process your, your, chemicals twice as … fast. I have Melissa: Yes, faster processing in the liver. So that’s when she told me, ’cause she started, uh, me out on methylphenidate, and I was like, “Well, what about Adderall?” Because it, I see it work for my kids, you know? The kids are chip off the old block, right? And so I’ve had them tested too, and all three of us are positive for that. It’s lovelin- lovingly known as the motherfucker gene mutation. Um, yeah, so, and it is. It’s, it’s quite a bitch, um, ’cause it causes a whole bunch of other problems. And of course, we’ve talked about Ehlers-Danlos, so I have, uh, hypermobile Eh- Ehlers-Danlos. I’m having a hard time … I’m just having a hard time with that in general, mental health wise, because there’s just not enough awareness about it, enough people, and doctors, doctors and nurses. And you know, I’ll, I’ll say I wanna, I would love to be able to get [00:25:00] to a point where I can just say, “I have H-E-D-S,” or heads or what- however they’re gonna pronounce it, and, like, somebody know what that is when I go in for an appointment. But I still have to explain it, you know? And then that, that cuts into my time. ‘Cause they only … When you’re, when you’re our age, they only give you, like, 15 minutes, if that. When you’re much older, ’cause I’ve had to take, I’ve had to take family members to the doctor, they get a whole lot more time. But, uh, you know, it’s like, "Oh, you’re, you’re too young to be this sick. You’re too young to be this old," Brett: Right. Yeah. Curious Doctors Matter Brett: Um, I did– I found that doctor for me that knew exactly what all those acronyms meant, knew exactly, like, not only did they know what POTS was, they knew like seven different kinds of POTS and what tests to use to narrow it down. And then she got called up to National Guard Melissa: Oh, I wondered, I wondered, what happened to that doctor, ’cause it sounded so Brett: I waited. I was on a, I was on– I w- I had an appointment scheduled that was gonna be six months from the time she [00:26:00] left. Um, and I had it scheduled, and it was on July 7th. And then I got a letter in the mail saying that her Guard duty had been extended, and now I can’t see her again until September. And, like, I’ve, I’ve tried seeing other doctors that work with her, but none of them have the knowledge she has, and it was such a relief Melissa: Is this the curious one? Okay. I always think about you whenever I’m either looking for a provider or in the, in the midst of, of getting, you know, shuffled around to a new provider. I’m like, “I hope they’re curious,” ’cause that made– that meant so much to me when you explained about how a doctor needs to be curious. I’m like, “That’s what I need.” I need somebody… Or even just my therapist. I have a new, a new therapist that I see, and she’s really curious, and I really, really like that about her. That’s something that helps with mental health, is when somebody’s curious, ’cause I’m Brett: it goes h- it goes hand in hand with credulousness. Like, [00:27:00] first they have to be willing to believe you, and like, especially when it comes to invisible issues like EDS. Like, you have to be willing to believe a person and then be curious enough to look for answers. Like, the first step is believing, and the second step is curiosity. Melissa: Yes. I’ve already had my patient record marked as… Have you ever heard this one? Worried well. Brett: No. Melissa: I looked it up. It’s basically hypochondriac. Brett: Yeah, that’s what I was gonna guess. That Melissa: Yep. I actually– I was proud of myself because I actually did confront the doctor about it and I said, “What does this mean?” I said, “I, I looked it up and it kinda concerns me ’cause it makes me look like a hypochondriac.” And she said, "Oh, no, no, that’s just a, a code that we use when we don’t have something else to assign to it so that insurance will pay." Bullshit. Brett: Yeah, right? I feel like that’s exactly the kind of [00:28:00] thing insurance doesn’t pay. Melissa: Mm-hmm. so Vyvanse Vs Adderall Brett: what do you wanna know about Vyvanse? Melissa: Um, a- and I know it’s different for everybody, but I just kinda wondered what your take was on it. Um, how– can you compare it to Adderall at all for me, Brett: Yeah. Melissa: no comparison? Brett: it’s basically a non-abusable, I would call it lower lying version of, of Adderall. Like, it’s in the same family of stimulant as Adderall, but it can’t– It isn’t processed or it’s… I don’t remember how the mechanics of it work, but you can’t snort it basically. Like, it doesn’t, it doesn’t do anything Melissa: Which I wouldn’t wanna do anyway ’cause there’s nothing up here. Brett: Sure. Sure. And then, yeah, I’m not suggesting that was gonna be a problem for you. Um, but it’s also, like, it’s way, um, for me anyway, it’s way calmer. [00:29:00] Um, and there are people that say it doesn’t do anything at all. Um, especially a lot of people, a lot of people say the generic version doesn’t do anything, um, and that the name brand version does, but I haven’t found that to be true. Like the generic, which you’re correct, still costs like 200 bucks a month, um, for the generic. Um, but it is– It’s not my favorite. Melissa: I wondered why– what made you stop taking it. Did it just not work for you? Brett: No, I still take Vyvanse. Um, yeah. Um, I used to take, um, Focalin, which I loved. Melissa: That really worked for my kiddo, yep. Brett: but it also triggered my mania, Melissa: Mm-hmm. Mm-hmm. Brett: so I was always walking this line of like, do I wanna be super productive and manic with like weeks of depression in between, [00:30:00] or do I just wanna be somewhat productive and stable? Um, which is why I’ve stuck with Vyvanse, and my doctor loves it enough for me that she won’t, she won’t prescribe anything else for me at this point. Like, I’ve asked about switching. I’ve asked about moving back to Adderall and things like that, but, Melissa: It seems like you’re, like you’re kinda on an evening out. Brett: Yeah, I haven’t had a manic episode for a couple years now. Tracking Mood With Data Melissa: Do you track it? Do you– Like, have you ever seen those– I keep seeing these ads for it ’cause, you know, the algorithm feeds us the stuff for wearables that are, um, called– I think it’s called Visible, so it makes your symptoms more visible instead of invisible. Like, do you track it? Do you Have you nerded out on your own data? Brett: like my mania and depression? Melissa: Yeah, like do you track it and look at graphs or anything like that to Brett: See, I’ve never had to use an external tool because I can just look at GitHub contribution graphs, and I can look at [00:31:00] my RSS feed, and I can see exactly, like for a period of like eight years, I can pinpoint exactly where my manic episodes were, um, because that data is historically preserved out there on the internet for all to see. Um, it’s, yeah, it’s– Well, and that’s, like I built tools that gathered that, those various sources of data. Um, and then there was a, a tool called, um, I forget. Melissa: cool, though? Hmm. We’ll think Brett: But it could pull, it could pull in all that data. Um, Bell Beth Cooper, Hello Code, I can’t remember the name of the app. Melissa: Yeah, it’ll come to you eventually. Brett: sure. Uh, but it could pull in like your GitHub, uh, commits along with like what the weather was at the time, how many songs you listened to that Melissa: Oh, day one sorta does that, yeah. Brett: Does it now? Melissa: A little bit, yeah, your locations, [00:32:00] um, if you turn on some of those things. Like not– I don’t think it does the music and things like that, but Brett: I haven’t used it for a while. I haven’t used it for a Melissa: I was gonna switch to the journal app. I was actually really… I held off on upgrading to Tahoe for the longest time, but that one kept nagging at me ’cause I thought, oh, you know, maybe. I mean, as much as I love Day One, I, I thought about, I thought about actually switching over, but no. I tried it. I’m, I’m gonna stick with Day One. Brett: Cool. All right. Cane And Somatic Therapy Brett: Um, so did you have, did you have more to add to your Melissa: Oh, I was gonna, I was gonna add on to what you were talking about with the suspenders. I did start… I think you probably… Well, yeah, you commented on it. Um, I started using a cane, and that I have mixed feelings about that. Um, I should have brought it in here so I could show you. I’ll show you later, ’cause, uh, anyway, it’s, it’s purple. I did get a pimp cane. That’s what my husband calls it. I thought, damn it, if I’m gonna use, like, a cane, then it’s gonna be [00:33:00] purple, and I’m gonna like looking at it, as much as I hate to use it, so. So I’ve been trying to use it. I… What you were talking about with, uh, with finding a curious doctor, I do have new physical therapist, um, so I’m really happy about that. Same kind of thing where she’s super booked. I think that’s just how it is. Like, the really good ones, they’re good, and, you know, it shows because it’s, it’s hard to get in to see them. So yeah. So I’m, I’m looking forward to that. We’re gonna be doing… Have you heard of somatic therapy? Brett: Yeah. Melissa: Yeah. So ha- have you tried it? Do, do you like it? Okay. That’s, that’s what I’m embarking on. Brett: I actually have a friend who teaches classes in it. Melissa: Oh, Al probably knows about that. Brett: y- yeah, Melissa: Yeah, I’ll, I’ll Brett: and it is, it is amazing how hard just doing things, doing motions you’re used to, but doing them very slowly and intentionally. It is like you– Just like, Just like, doing y- like a clamshell where you drop your knee, you’re [00:34:00] on your back and you drop your knee down to the side and bring it back up. Like that motion, most of us, even infirmed people can do that okay. You try to take… You try to do that and take like five breaths in each direction, and you’ll start shaking. It’s very Melissa: Ah, uh-huh. Yep. Brett: Yeah, but it’s good. Like it’s g- it really retrains your muscles. It really, it strengthens, retrains, and helps with, uh, finer motor control. Melissa: Oh, that’s interesting. Yeah, I, I’m, I’m a little bit on the skeptical end of it, so that’s why I’m, I’m glad that, that you, you vouch for it too. It’s like I know that it works, but I just… I guess I wanna understand the science of it a little bit more. Like, for example, I’ve tried, uh, acupuncture, and I just didn’t feel like it did, did anything for me. I think you have to be, like, a believer, and I just Brett: think so. Melissa: I, I, I even did that on purpose knowing that I kinda felt like it wasn’t gonna work. I was like, well, what if I just go into this? ‘Cause, [00:35:00] ’cause I talk to people and they’re like, "Well, you have to believe in it." I’m like, but what if I don’t? I just don’t, you know? I’m, I see it Brett: it’s not medicine if you have to believe in it. Melissa: Yeah. I mean, I see it work for other people. I know there’s, you know, such a thing as placebos and things like that, and I don’t know, it’s, it’s woo-woo and I, I, I like woo-woo stuff. I, it just, it didn’t do anything for me, so… It’s not to say that it doesn’t work for other people, but it just did not work for me, and I, I kind of, I, maybe I just, uh, did that on purpose when I, I try- probably just tripped myself up going into it thinking, well, I just don’t believe it, so if it works, then there must be science behind it. And then, then, I’ll believe. But it didn’t work out, so. So the, I’m a little bit on the fence about the somatic thing, but the, the, the gal that I’m working with is just so, she has EDS herself, and like, like what you were saying, like, she, she knows all about it and she could even, you know, tell me the, the type that she has, and I was like, I met, I met, actually last week I met two zebras in one week. [00:36:00] You, you’re familiar with the, the zebra mascot? If you, uh, the saying goes, if you hear hooves, think horses. But we’re not horses, are we? Yeah, so Yeah, so that’s, that’s our, our Somatics For EDS Melissa: EDS Brett: somatic– somatics you don’t have to believe in for them to work. Melissa: Okay, that is Brett: it’s an actual physical therapy method that trains the finer muscles, um, that surround your larger muscles and, and strengthens those, and it– Yeah, it’s for real. It’s, yeah, it’s not like a… It’s soma- I think, Melissa: w- totally Brett: ’cause I I had the same reaction when someone said somatics, ’cause I think, “Oh, that’s some holistic idea of the body, um, of soma,” and it’s… No, it’s, it’s got legit physical therapy behind it. Melissa: And, Yoga Modifications Melissa: you used to do a lot of yoga too, so that probably makes Brett: I still do. Melissa: Yeah? That’s [00:37:00] wonderful. Brett: it’s gotten really hard. Um, I can’t, I can’t– So I get dizzy Melissa: Yeah. Brett: going from sitting to standing, um, and my back gives out if I am in, like, horse or warrior two for more than a couple minutes. Um, and I can’t do cobras because I have a belly like a nine-month pregnancy. Um, so I have to do, like, prenatal yoga, um, which is actually a thing. Melissa: that’s a good idea. I’m glad you brought that up. I should look Brett: a- and I do chair yoga, um, where I I take the class that everyone else takes, but I modify it to work with… Like, there, there are defined moves that you do with a chair instead of. Instead of doing down dog, you do, like, a 90-degree down dog holding the back of a chair. Um, and you put, like, a knee on the chair to do warrior two, so you’re actually [00:38:00] resting. And Um, and you can do it fully seated too and get at least the arm exercises out of it. So I’ve been trying to maintain, maintain flexibility and some endurance. I’m not doing yoga the way I used to do it, but I am still Melissa: I’ve seen some of your poses. It’s pretty impressive. Brett: Yeah, back in the day. Melissa: W- when you could be upside down. Polycystic Liver Shock Melissa: I should look into that because I, you know, although I’m done having babies, like far done having babies, I have… You probably know about this too, I have polycystic liver disease, which is a really rare type of liver disease, and it’s not fatty liver. Oh my God, I have to keep telling doctors that. That’s the other thing. It’s like, it is not fatty liver. It is not. It- they’re cysts. It’s a totally different thing. I’m basically full of bubbles. So I… But it feels like that’s why I went in to get it. I didn’t actually get that checked. I found it accidentally when I went in for an heart, for a heart CT. That’s when they found it, and for a, a breast MRI, so [00:39:00] both those, those types of scans caught it. The other parts were fine, so my heart’s fine, so that’s a relief. But yeah, so this was a bit of a shock. And so I don’t know exactly what it means moving forward, um, but my entire liver is, like, engulfed in cysts, so. Right? But my blood work is, is fantastic right now, so I’m just gonna keep Brett: That’s good. Melissa: hoping it stays that way. Brett: That’s something. Fatphobia In Healthcare Brett: Um, I I have heard for a long time about, um, doctors being fatphobic and, and always assuming that, um, always assuming that your health i-issue is because you’re fat and not even looking for underlying issues, which has been an interesting experience for me because that really never happened to me. Melissa: Mm. Brett: Um, at least not once I switched to Gundersen from, like, a local clinic. Then I realized that it’s not just being fat that gets you [00:40:00] stigmatized, it’s being a fat woman. Melissa: Mm, I was gonna say try having a uterus and being Brett: yeah. Yeah. Um, like I talked to one of my best friends, April, who he’s, has been on Melissa: by, women doctors. Brett: Yeah. Yeah. And that’s, that’s what April tells me. She tells me all these horror stories. Even after finding care she trusted, she still has to deal with people saying, “Well, if you just lost some weight.” Like, she’s been fat her whole life. She’s in better shape than most skinny people Melissa: Yeah. Mm-hmm. Brett: I mean, she does sit-ups with 50-pound plates and does, like, five, 10 miles at a time on her, like, on her bike and, like, she’s in great shape and still has to walk with the ski poles, and she’s getting her second knee replaced this week. And, like, it, it’s just infuriating to hear the way that doctors dismiss Melissa: You know what the problem is, Brett? Brett: goes through [00:41:00] when Pole Dancing Reality Check Melissa: Not enough doctors have watched fat pole dancers. That is the problem right there. They need more education. Brett: Um, yeah. There’s, there are a couple of, um, queer burlesque shows Melissa: shows, yes. Brett: in my area that almost always include a plus-size pole dance, and it is amazing to Melissa: Oh, it’s mesmerizing. It should be an Olympic sport. Remind me to send you the, the link to, unless you’ve already seen it, have you seen the Deadpool pole dancer? Brett: No, I don’t think Melissa: you are in for a treat. We might just have to put that in the show notes, but I don’t know, I don’t know if your listeners are that, are into that It’s fully clothed, but it’s, there’s even blue Crocs involved. Brett: So this is nobody that you’re seeing on the Melissa: I wondered, yep. I wondered, yeah. Aw, he looks so soft. Mm. Mechanical Keyboard ASMR Brett: So you’ve [00:42:00] gotten really into mechanical keyboards. Melissa: have, I have. In fact, uh, I was gonna, I was gonna see how this might sound, but I, I brought my little box of key caps to show you so that I could say, welcome to my ASMR channel. Brett: That would… is is that a thing? I bet there are ASMR, like, key switch testing. Melissa: yeah, yeah. I’ve run across a couple of videos where, you know, they’ll have a hashtag ASMR in there, and that’s, that’s what it is. Do you experience ASMR yourself? Brett: No. Melissa: No? So when you listen to those videos you don’t get like the s- the tickling of the spine and stuff? Brett: No. Melissa: I do. It actually, it goes, it… I forget. I always forget what the acronym stands for, but it, you know, has something to do with the meridian. So if you can i- imagine your brain like split in half, and I feel it right on this side. It goes, it goes like the, down the back of my head, behind my ear, and down into my shoulder. It [00:43:00] is the funkiest feeling, and I love it. I love it so much. Even when we were talking about animals in the, in the beginning and I even had a cat that would come and just like kind of lick my ear and, oh, I just, I love that. Most people cannot stand that sound. They have the opposite condition where they can’t handle somebody chewing gum. My grandfather had that. Um, some, some kinda, it ends in a tonia. Misatonia or something like that, um, where… I don’t know. Do you have any of those like sound sensory issues? I have a lot of Brett: really don’t. I’m very, I’m very, like, sound Like, I like loud, heavy music. Like, that does something for my psyche. Um, but general sounds, they neither bo-bother me nor stimulate me. Melissa: imagine what that’s like. I just can’t. I’m So bothered, and my kids too, and you know, ugh, God, Brett: So El Melissa: has been problematic. Brett: El is, El is, definitely sensitive to sound, um, in a way that Like, even my [00:44:00] mechanical keyboards can’t be, can’t be on the same floor of the house as Elle. We pretty much live in silence, and that’s fine for me most of the time because, like, it just doesn’t affect me either way. So, like, keeping things quiet is easy, and I focus well in silence. And then when Elle’s gone, I blast my music, and w- when I’m in the car, I blast my music, and then the rest of the time I live in the quiet place. Melissa: Mm-hmm. In The Quiet Place. Brett: Yeah. Melissa: Yeah, we have- something a little similar, but m- my husband and I have, uh… We have our his and hers kind of setup here in, in the, in our den, in our inner study. So he’s got his side and I’ve got my side. So we’re together, and he does a lot of grading papers, and he’s really good about putting his, his earbuds in and just tuning the whole world out. He’s… It’s fascinating to watch that man just [00:45:00] execute. I mean, I just am so envious of people who can just execute. But the, the, the, yeah, the sensory, it’s all about the sensory stuff for me when it comes to keyboards. I actually thought about… I don’t know how popular it would be, but I also thought about making a podcast, a video podcast, that would highlight the intersection of nail art and mechanical keyboards. Because I’ll tell you, that’s actually what… I’ve always loved mechanical keyboards, but yeah, the, the one that I had, someone had given me a, a Matias, and oh, it’s, it’s so loud, but it’s like high-pitched. It’s kinda sharp. And it was even kind of annoying to me after a while. And then it does not, it’s not a mechanical keyboard in that you can’t pull the switches out, so you’re kinda stuck with what you got. Like, you might be able to change the key caps if you could find them, but couldn’t change the switches. And something happened to the S key, and I was like, “All right, it’s over,” so. But I can’t get rid of them either, so one of these days I wanna have like a display of, of keyboards. [00:46:00] Nail Art And Picking Melissa: But what got me, what got me into saying, “Okay, I’m finally, I’m just gonna invest in a keyboard because it’s ergonomically important to me,” is I have… And I can’t pronounce it, so I’m not even gonna try, but there’s a condition, and it’s a self-diagnosed thing. But I, I am a picker. I pick my skin a lot. Um, I think it’s called derma something Anyway, so I wasn’t gonna try to pronounce it. But, uh, I’ve always had that condition since I was a kid. I didn’t even know it was a thing. I just thought everybody get, uh, picks. But then during the pande- during the pandemic, it got super bad. Like, I had, I had, um, some panic attacks and, you know, as a lot of probab- people probably did. But it got so bad to the point where I had picked my fingers and they were bleeding and they were throbbing and they were hurting. And I said to one of my kids, I said to my youngest, I said, “Can you just, like, if I, if I’m picking, can you just let me know?” And then I regretted doing that because then he took it on as this, like, full-time job, you know? And it kinda [00:47:00] gave him anxiety, and I thought, “Oh, okay, that, that was a bad thing to do.” So I s- I let him off the hook. I said, “No, you don’t have to tell me anymore.” Um, because, yeah, ev- even if I went to, like, just kinda, like, clean under my nail or something. So it was actually causing a real problem for the family that I was just picking so much. And it’s not just my fingers, it’s, like, other parts of my body. So I thought to myself, “Well, what can I do about this?” And so I started putting fake nail tips on. And I hate to be all, like… I don’t know, I’m not, I try not to be, like, a very vain person, but I really started kinda falling into the nail art side of things, and I, I just recently learned how to do gel and work with, um, uh, what’s it called? Uh, not resin. So I… Oh, that’s another ASMR thing. Do you like to watch resin pours? Brett: I do, actually, yes. Melissa: that’s… Okay, so if you like resin pours, if you like to watch the viscosity and the way the, the chemicals, like, form together and when they, when they mix colors in and stuff, [00:48:00] that’s what it’s like with nail art but on more of, like, a macro level because it’s, you know, you’re working with small stuff. Like, just, just recently I learned how to do… So I’m showing Brett this on, on camera, but I recently learned how to do the kind of nail polish that you take a magnet and you run the magnet along it, and it makes this, like, a cat’s eye. Brett: Yeah, that’s cool. Melissa: I love it. So, so that, so combining nail art then, and I thought, “Well, now I’ve got these long nails,” but all of my keyboards have been these flat, really low-profile keyboards. And, you know, I just, I started to dread it. So then I was kinda caught between a crossroads. Like, either I leave nails off and I can type really, really fast and have high accuracy with no nails, but then as soon as, as soon as I get, like, a little snag or something, then I start picking and then it’s just, it’s all over then. Or I try to find a way to work with these nails. So that’s what I started thinking, “Well, maybe if I had higher keys.” And so then I just, yeah, rabbit hole. [00:49:00] Went down the rabbit hole, and I’ve, I’ve just kinda been there ever since. And, uh, it really, I think, uh… Let’s see. How long ago did this start? It’s only been about maybe like six months or something like that, so. Keyboard Layout Rabbit Hole Melissa: But in that time so I’ve started, um, building a collection of switches. So I’ve been really interested in both the key caps and the switches. Um, I’ve got my baseboards. I like my Royal Kludge the best. This is… I’m gonna show Brett my Royal Kludge. So, so this is what it’s looking like right now. Brett: Yeah. Melissa: It is very purpley. Um, I did post some pictures. I can… I don’t know if you do pictures in show notes, but I could take some pictures for you It’s got a knob. It’s got, um… Let me see if I can do it real Brett: Do you use the knob. I have a couple keyboards with knobs and even a joystick, and I never actually use them Melissa: Good question. Um, I, I use it, I try to use it for volume at [00:50:00] times, and that’s probably what I use it for the most. But this one does have a… Let’s see if I can get this into focus here, backwards and upside down. It’s gonna be upside down, but you see how you can put, you can put your logo Brett: Oh, yeah. Nice. Melissa: got my The Mac Mommy little logo on there. Otherwise, it gives you the time in military format, so that’s kind of handy to have. Um, but yeah, it’s… To be honest, I, I love the, I love this Royal Kludge because it’s nice and heavy, and I love the form factor. It’s got a number pad, um, because I’m, because I am a grown-ass adult and I need a number pad. Um, but it’s nice and heavy. It doesn’t, it doesn’t move around my desk a lot. I kind of have to type, like, kind of crooked, ’cause that’s just the way my neck goes to the wrong way and stuff like that. So I like being able to fit it on my desk. I have a, I had a larger one made by Red, uh, what is it? Redragon. This is the one that I started [00:51:00] out with. Gonna make lots of noise here. But as you can see, this one is way bigger. And it was, as much as I liked it, I mean, I fell in love with it, but what was happening was my accuracy was, like, really thrown off because I fe- I kept feeling like it just needs to be, like, a couple centimeters to the right or a couple centimeters to the left. It just wasn’t centered very well. So this one, my husband gets all the hand-me-downs, so that one went over onto his desk. Uh, and then I also have a baby keyboard here, and this is another Redragon. This is my little mini one. Brett: that’s, that’s the kind of keyboard I mostly use, like a 70% keyboard. Melissa: Yeah, I think this one’s even 60. Um… Brett: My– The one I’m using right now is, uh, 60. There’s no, there’s no function row, there’s no arrow, there’s no keypad or, like, arrow pad. Um, Melissa: No [00:52:00] arrows? How do you live without arrows? Oh, do you, you mapped your keys to something Brett: so it looks like this, Melissa: nice. I love the Brett: that the, the space bar is split in two. Yeah, my, my, my partner says it looks like, uh, gay ’80s. It’s all pink and blue and purple. Um, but the, the space bar is split, and the right half of mine functions as something called a mod key, and when I hold that down, then my I, J, K, and L keys become arrow keys. Melissa: Oh, wow. Brett: once you get used to it, you never have to take your hand off the home row. Melissa: Oh my God, that must be amazing. Brett: It– Yeah, once you get used to it, it, it’s so… Like, g- moving to a keyboard that doesn’t have that is kind of tortuous. On my MacBook Pro, I have remapped it using Karabiner so that Melissa: [00:53:00] That’s what I’m using. Brett: if I hold, the semicolon down with my pinky, then H-I-J-K-L become, Melissa: Oh, nice. Brett: become arrow keys, so I still don’t have to move my hand all the way down and to the right. Like, that’s such a inefficient movement that then I have to, like… Because I don’t have great feeling in my fingers, so finding, on a low-profile keyboard, finding the, the homing buttons again Melissa: Oh, do you use the humming buttons? See, that’s the thing, I was never taught that. I mean, I took like a ty- I took like a typewriting class back in high school, and I just didn’t like it. I, I just taught myself. I just… I’m an autodidact that way, so I just taught myself. Brett: my dad, back in 1984, we had a typing program on our PCjr, and I Melissa: It wasn’t Mavis Beacon, was it? Brett: remember. I don’t remember. All I know is, like, It taught you touch typing, and it would give you [00:54:00] these lessons, and you would basically just mirror what was on screen. And at the age of seven, I was typing at about 68 words per minute on an, on an old IBM PCjr keyboard. Um, got a lot faster through high school and everything. But yeah, I was, I was, from day one, I was raised to be a touch typist, and, and I took all the classes they had in school. Melissa: But you still touch Brett: labs. Yeah. Melissa: Uh-huh, yeah. So you don’t do the home rows. Brett: No, that is touch Melissa: Oh, touch typing, so you do feel… for the bumps. Brett: Yeah, I feel for the bumps, and then I just, like, my f- my key, my fingers never really leave the Melissa: Oh, yeah. See, I wish I could do Brett: centered home row. Yeah. It’s, it, it’s good. Um, Melissa: And you’re using the split, so my gosh. Brett: What– You get used to that too. Um, like, [00:55:00] I can’t do it with the split far apart. I’ve seen people use, like, splits, like, way out to the sides, and I can’t, my, my brain doesn’t do that. Like, my hands have to be within, like, six inches of each other. Melissa: I always thought, it would be so cool to have something where you could have it, like, raised up like this, right? And use your hands sideways. Brett: Yeah. Well, that’s I mean, that’s essentially, I have, on the bottom of this keyboard, I have these risers. Melissa: Oh, uh-huh. Oh, Brett: So it sits, right now I have it at about a 45-degree tent, tent, tent. Um, but it can go up to more like an 80-degree tent, where you’re actually Melissa: Wow. Brett: uh, almost like you’re clapping, you’re typing. Um, I don’t Melissa: of that. I have a, a, handshake mouse. Brett: Vertical mouse. Melissa: You like… Is that what you have for a mouse too? Brett: no, I, I love Melissa: Trackballs. Oh, trackpads. Oh, okay. Brett: Apple’s Magic Trackpad changed my life. I’ve never used– I’ve never gone back to a [00:56:00] mouse since the first Magic Trackpad came out. Melissa: So you’re all about the gestures then? Brett: yeah, Melissa: Yeah. Yeah, yeah. That’s great. Brett: Bet- bet- better touch tool for the win. Melissa: You know what it is for me, is because of the type of work that I do, and this is very much true for both of us, you do these things because of the type of work that you do. The type of work that I do, I’m in everybody’s homes, so I have to ty- I have to be able to type and use their mouse and, I mean, it’s actually a very dirty job. So I keep hand wipes with me everywhere. Um, that, that was why during the pandemic I was like, “I am not coming to your house and I am not touching the stuff that you just picked your nose and…” Yeah, mm-mm. But, so, so i- it’s been kind of keeping me almost like a purist in a way as far as keyboards have gone all these years. I, I finally just kind of let go and embraced this recently, th- which is why I’m so excited and why I’m just kind of nerding out on it, because when, when I worked [00:57:00] in, like, I’ll call it the industry, um, I got my f- my start in prepress. So I worked in prepress, I was a typesetter, and we had… That’s what I kind of miss. We had the old clunky beige keyboards, and I had my muscle memory such that I think my o- my Option key would have, like, the indentation of my nail on it. You know? ‘Cause I had, just like you have, keys that are programmed. I could… I was a Quark queen. I don’t know if you’re familiar with QuarkXPress? Brett: Oh, yeah. Yeah. I was a graphic designer. I I know Quark. Melissa: Yeah, I loved it. I was… And, and I used it back in the OS 9 days, OS 7 really, is when I started out. Uh, I did not like the OS X vers- OS 10 version of Quark. Did not like it at all. Brett: No, but that’s Melissa: it was slow. Brett: Adobe came out with, what was, what was Adobe’s… InDesign. Yeah. By the time I had started, by the time I had started my own ad agency, we were all InDesign. Melissa: Oh, [00:58:00] nice. Okay. I mean, it was a Brett: and none of the, none of the print shops expected Quark files Melissa: Yeah. Oh, it was so expensive. I remember I had to buy it when I was in college, and I remember it cost, like, $800. I’m probably still paying for that, damn it, in interest. Yeah, so that, that’s how I got my start originally, and that’s how I was doing… I, I went to… So I have, I have a Bachelor of Fine Arts. I went to college in order to be a designer. I wanted to be a designer designer, and that’s what I, what I thought I was good at and thought that I liked doing, ’cause, you know, “Oh, you’re a girl. Go to art school. You like to draw.” You know? I’m always bitter about that because I really wish that I would’ve been able to go… I mean, this was, you know… I’m, I’m 51, so this was back in the day where girls, girls don’t do computers and girls don’t do coding. G- girls don’t do computer science. They didn’t even call it computer science. They didn’t even call it graphic design back then. It was commercial art. Um, so I studied that and, you know, I liked it ’cause I thought, “Well, this is what I could, I could take my art and make [00:59:00] a living into it.” And then fast-forward, um, I just started to fall in love with the technical troubleshooting side of things. So as, as good as I was at the technical typesetting and the technical, like, putting prepress things together, you know, um, uh, key sheets and s- you know, things like that. Do you remember, was there, uh, did you ever use a program called Quick Keys? That was one of the ones Brett: familiar. Melissa: you could map your own keys to things. So w- when I was in prepress and doing typesetting, I used that program and I, I mapped all my keys, and I had all these quick keys and stuff so I could go really, really fast, you know? So when they wanted something done fast, they gave it to me, and I could just fly through documents with this. But then as people learned that I was good at this kind of stuff and troubleshooting, they’re like, “Oh, hey, Roger needs, you know, has a problem. Can you go help him?” So I’d go over to his cubicle, I sit down, and he’s got nothing. You know, he’s got [01:00:00] no quick keys, no nothing, and you just kinda get lost because your muscle memory just adapts to it. And I couldn’t help people the way… And, and that was what it was about for me. I really liked more helping people and troubleshooting and the technology side of things than the actual design process. So I kind of went to the other side with it. And so I just kind of, like, vowed that, okay, I’m not gonna do any kind of, like, customization on my own workstation because then I’ll, my, my muscle memory will map to it, and then when I go to sit down to help somebody else, I won’t… You know, I’ll be so much in my own world that I won’t be able to help them. And so I just kind of, like, remained a, a pu

In this episode, Ash and Dusty discuss the important topic of when worsening ADHD symptoms may actually be caused or worsened by other physiological or medical conditions. They explore how hormonal changes related to PMS, PMDD, perimenopause, and menopause can significantly impact cognition, mood, and executive function. Dusty shares her personal experience with PMDD and how medication has been life-changing in managing symptoms that overlap with ADHD but require different treatment approaches. They also highlight other health issues such as anemia, mast cell activation syndrome (MCAS), hypermobility disorders like Ehlers-Danlos, TMJ, migraines, and sleep disruptions that can mimic or exacerbate ADHD symptoms. The hosts emphasize the importance of recognizing these co-occurring or separate conditions and how ADHD coaching can support managing them by focusing on follow-through, executive functioning, and problem-solving rather than "coaching out" chronic illness itself. Ash and Dusty encourage listeners to advocate for themselves with healthcare providers, get regular checkups, and explore potential underlying causes when symptoms suddenly worsen. They also caution against dismissing new or worsening symptoms as just ADHD and stress the value of integrated care between medical treatment and coaching to improve overall functioning and quality of life. Episode links + resources: Join the Community | Become a Patron Our Process: Understand, Own, Translate. About Asher and Dusty For more of the Translating ADHD podcast: Episode Transcripts: visit TranslatingADHD.com and click on the episode Follow us on Twitter: @TranslatingADHD Visit the Website: TranslatingADHD.com

In this "MythBusters" edition of the Bendy Bodies Podcast, Dr. Linda Bluestein and recurring co-host Dr. Dacre Knight tackle the persistent misconceptions surrounding Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and their frequent companions, Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). Dr. Knight, Medical Director of the UVA Health EDS and Hypermobility Disorder Center, shares why hypermobile EDS (hEDS) is a serious condition even when not life-threatening, and why a negative genetic test doesn't rule out a diagnosis. The conversation dives deep into the "invisible" impact of these disorders on long-term disability and work ability, while offering hope through a better understanding of pain processing and nociplastic pain. From debunking the idea that POTS is merely deconditioning to navigating the controversial waters of MCAS, this episode empowers patients and clinicians with the knowledge needed to look past the surface and recognize the systemic reality of bendy bodies. Takeaways: EDS Severity: Hypermobile EDS and HSD are serious, chronic conditions that cause multi-system impairment and long-term disability, regardless of whether they are immediately life-threatening. Genetic Testing Limits: Current genetic testing cannot rule out hEDS or HSD because their specific genetic markers remain unknown; diagnosis still relies on clinical history and physical assessment. POTS is Systemic: POTS is far more than simple deconditioning or a cardiac issue; it is a neurologic dysfunction of the autonomic nervous system that impacts everything from heart rate to temperature regulation. The MCAS Spectrum: While MCAS criteria are still evolving and controversial, focusing on clinical patterns and safe treatment responses can improve quality of life even when lab tests (e.g., tryptase) are negative. Pain vs. Damage: Pain is a complex, bidirectional experience; patients can experience significant pain without visible structural damage due to central sensitization and dysfunctional pain signaling. Want to learn more about the UVA EDS Center? Go AquaTru.com now for 20% off (your purifier) using promo code BENDY. For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

In this "MythBusters" edition of the Bendy Bodies Podcast, Dr. Linda Bluestein and recurring co-host Dr. Dacre Knight tackle the persistent misconceptions surrounding Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and their frequent companions, Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). Dr. Knight, Medical Director of the UVA Health EDS and Hypermobility Disorder Center, shares why hypermobile EDS (hEDS) is a serious condition even when not life-threatening, and why a negative genetic test doesn't rule out a diagnosis. The conversation dives deep into the "invisible" impact of these disorders on long-term disability and work ability, while offering hope through a better understanding of pain processing and nociplastic pain. From debunking the idea that POTS is merely deconditioning to navigating the controversial waters of MCAS, this episode empowers patients and clinicians with the knowledge needed to look past the surface and recognize the systemic reality of bendy bodies. Takeaways: EDS Severity: Hypermobile EDS and HSD are serious, chronic conditions that cause multi-system impairment and long-term disability, regardless of whether they are immediately life-threatening. Genetic Testing Limits: Current genetic testing cannot rule out hEDS or HSD because their specific genetic markers remain unknown; diagnosis still relies on clinical history and physical assessment. POTS is Systemic: POTS is far more than simple deconditioning or a cardiac issue; it is a neurologic dysfunction of the autonomic nervous system that impacts everything from heart rate to temperature regulation. The MCAS Spectrum: While MCAS criteria are still evolving and controversial, focusing on clinical patterns and safe treatment responses can improve quality of life even when lab tests (e.g., tryptase) are negative. Pain vs. Damage: Pain is a complex, bidirectional experience; patients can experience significant pain without visible structural damage due to central sensitization and dysfunctional pain signaling. Want to learn more about the UVA EDS Center? Go AquaTru.com now for 20% off (your purifier) using promo code BENDY. For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

Dr. Dave Clarke returns to Ditch the Labcoat to dig deeper into something medicine still doesn't talk about enough: what happens when your body creates real, debilitating symptoms but there's nothing structurally wrong.This isn't about imaginary illness or psychosomatic complaints. This is about the brain physically changing in response to stress, trauma, and unresolved emotional burdens, and manifesting those changes as chronic pain, migraines, irritable bowel syndrome, fibromyalgia, chronic fatigue, and dozens of other conditions that standard medical tests can't explain.Dr. Clarke walks through what neuroplastic treatment actually looks like. How he identifies patients whose symptoms stem from adverse childhood experiences, current stressors, or past traumas they've buried so deep they don't even recognize the connection. How he helps them see that their bodies are okay, their brains have just learned to create symptoms as a warning signal. And how, once that fear is removed and the real stressors are addressed, symptoms that have plagued people for years can resolve. Sometimes dramatically, sometimes over time with therapy.The conversation challenges everything medicine teaches about the link between pathology and symptoms. Why do ten people with identical "bone-on-bone" knee arthritis x-rays experience completely different levels of pain? Why do half of people over 40 have abnormal spine MRIs but no symptoms at all? Why do patients get told their spine is "abnormal" or they have Ehlers-Danlos or chronic Lyme when the real issue is unprocessed trauma from childhood?Dr. Clarke also addresses the system failures that keep neuroplastic treatment on the margins. Why physicians trained to think about organs and structures struggle to diagnose conditions rooted in the mind. Why patients resist the idea that their pain could be brain-generated, even when it's the only explanation that fits. And why collaborative care between medical doctors and trauma-informed mental health professionals is the most cost-effective intervention we're not using.If you've ever wondered why so many people have unexplained symptoms, why standard treatments fail them, or what actually works when medicine runs out of answers, this episode will reframe how you see chronic illness.Dr. Dave Clarke's Website:  https://www.symptomatic.me/Episode Takeaways1. Neuroplastic conditions are not imaginary. The brain has physically changed in response to stress or trauma, creating real symptoms in the body.2. Over 40% of people who present to primary care have medically unexplained symptoms, and at least a quarter to a third of adults experience neuroplastic conditions.3. More than half of people over age 40 have abnormal spine MRIs with zero symptoms, proving that structural abnormalities don't always correlate with pain.4. Pain reprocessing therapy starts with reassurance: your body is okay, you don't need to fear lifelong disability, and shifting attention from body to mind begins reducing symptoms.5. Adverse childhood experiences (ACEs) are often subtle. Not just physical or sexual abuse, but emotional neglect, perfectionism, or growing up in chaotic households create lasting neuroplastic effects.6. The key to uncovering hidden trauma: ask patients to imagine their own child growing up exactly as they did. This reframe helps them see experiences they minimized as actually harmful.7. Collaborative care between medical doctors and trauma-informed mental health professionals produces the best outcomes and is highly cost-effective, reducing ER visits and healthcare utilization.8. Resources are now widely available: apps (Curable, Nirvana, Digestible, FreeMe), self-help books, the Association for the Treatment of Neuroplastic Symptoms (symptomatic.me), and trained providers worldwide.Episode Timestamps03:45 – What Neuroplastic Treatment Actually Looks Like07:09 – The Stress Evaluation: Finding the Link Between Trauma and Symptoms13:35 – How to Get Patients to Believe Their Brain Creates Physical Pain18:55 – Placebo, Nocebo, and Why Pain is Always Generated by the Brain24:46 – Conditions That Benefit from Neuroplastic Treatment29:35 – Why the System Still Doesn't Believe This36:53 – How to Uncover Hidden Childhood Trauma46:45 – Resources for People Who Can't Access Specialized CareDISCLAMER >>>>>>    The Ditch Lab Coat podcast serves solely for general informational purposes and does not serve as a substitute for professional medical services such as medicine or nursing. It does not establish a doctor/patient relationship, and the use of information from the podcast or linked materials is at the user's own risk. The content does not aim to replace professional medical advice, diagnosis, or treatment, and users should promptly seek guidance from healthcare professionals for any medical conditions.   >>>>>> The expressed opinions belong solely to the hosts and guests, and they do not necessarily reflect the views or opinions of the Hospitals, Clinics, Universities, or any other organization associated with the host or guests.    Disclosures: Ditch The Lab Coat podcast is produced by (soundsdebatable.com) and is independent of Dr. Bonta's teaching and research roles at McMaster University, Temerty Faculty of Medicine and Queens University. 

What happens when people's lived experience with Multiple Chemical Sensitivity (MCS) is dismissed in medicine? And how can it become a vital form of knowledge?In this episode, Aaron Goodman speaks with Megan Moodie, a medical anthropologist and disability studies scholar at the University of California, Santa Cruz. Her work explores patient activism and how knowledge is produced in medicine. Megan also brings lived experience to this conversation, including Ehlers-Danlos syndrome and chemical sensitivities.You'll hear Aaron and Megan discuss: Why people with MCS are often dismissed or psychologized in clinical settings. How lived experience becomes meaningful knowledge in medicine.  What more equitable collaboration between researchers and affected communities could look like.And more!

Join Howie Mack on The Gospel Zone as he welcomes special guest, independent gospel artist Mayia Warren. Mayia opens up about her powerful life story, detailing her journey as a disability, foster care, and trauma survivor advocate from North Carolina.   In this inspiring interview, Mayia discusses: Pivoting to Music: How she shifted her career path from physical therapy (kinesiology) after realizing God was calling her into full-time disability  , which eventually led to her pursuing music. Navigating Challenges: Mayia, who is legally blind due to albinism and lives with Ehlers-Danlos syndrome, shares how her personal trials influence her music and mission. New Music: A deep dive into her new single, "As The Dear" (based on Psalm 42), an anthem of celebratory praise despite life's challenges, and her musical influences, including neo-soul, R&B, jazz, and even country. The Independent Artist Grind: The challenges and unique freedoms of building a gospel career outside of a major label, and how her community provides invaluable support. Advocacy, Art, and Service: Mayia's one-sentence mission statement as an artist, and how she balances vulnerability with pointing listeners toward the hope of Christ. Connect with Mayia Warren: Find Mayia on all platforms by searching "Mayia Warren"   #MayiaWarren #GospelZone #HowieMack #AffinityXtra #IndependentGospelArtist #AsTheDear #GospelMusic #NeoSoulGospel #DisabilityAdvocate #TraumaSurvivor #ChristianTestimony #NorthCarolinaMusic #WorshipLeader #NewMusic2025   https://youtu.be/mD80Lr7OojU

This is a recording of a previously hosted live webinar event. Polling and question submission features are not available for this recording. Format and structure may differ from those of standard podcasts.Join host Phil Plisky, PT, DSc, ATC, CSCS, and strength expert Daniel Lorenz, DPT, PT, ATC, LAT, CSCS, as they challenge the traditional 3×10 status quo and dive into the physiological necessity of true tissue loading. You'll explore how to move past clinical guesstimation by using objective feedback loops and functional testing to bridge the gap between initial rehab and high-level performance. Learn actionable strategies for determining appropriate intensity, along with set and rep schemes that build genuine load tolerance for your patients. Tune in to learn why it's time to “test, don't guess” and how to safely apply progressive overload to optimize patient outcomes.Learning OutcomesAnalyze the evidence around clinically relevant loading approachesApply evidence-based, practical strategies to actionably address the challenge of proper load progression that is mindful of the patient's history and current status, while also applying strength training principles to adequately build the patient's load toleranceSolve patient case scenarios involving how to properly apply the principles of progressive overload in rehabilitationTimestamps(00:00:00) Welcome(00:00:05) Introduction to loading in rehab(00:03:20) Understanding the importance of loading(00:05:52) Challenges in loading patients(00:08:45) Effective loading strategies(00:17:15) Balancing loading with patient safety(00:25:02) Teaching patients to self-load after rehab(00:27:36) Functional testing in rehabilitation(00:36:46) Case scenarios(00:42:20) Key takeaways for effective rehabilitation(00:44:50) Rest periods and their impact(00:47:32) Tailoring exercise for Ehlers-Danlos syndrome(00:50:18) The importance of reps and failure levels(00:56:16) Isometrics and pain management in rehab(00:58:48) Conclusion and resourcesRehab and Performance Lab is brought to you by Medbridge. If you'd like to earn continuing education credit for listening to this episode and access bonus takeaway handouts, log in to your Medbridge account and navigate to the course where you'll find accreditation details. If applicable, complete the post-course assessment and survey to be eligible for credit. The takeaway handout on Medbridge gives you the key points mentioned in this episode, along with additional resources you can implement into your practice right away.To hear more episodes of Rehab and Performance Lab, visit ⁠⁠⁠⁠⁠⁠⁠https://www.medbridge.com/rehab-and-performance-lab⁠⁠⁠⁠⁠⁠⁠If you'd like to subscribe to Medbridge, visit ⁠⁠⁠⁠⁠⁠⁠https://www.medbridge.com/pricing/

BEST EPISODE of The YEAR! Riley Courtwright shares her two Near Death Experiences (NDEs) publicly for the first time.Riley was a lifelong atheist, diagnosed with vascular Ehlers-Danlos syndrome that led to her organs shutting down, and ultimately her NDEs. Over the course of 18 months, Riley died twice — the first time at home after being sent away by doctors with no further options, and the second time seven months ago in St. Thomas, where she and her husband had moved so she could spend her final days.___________________________Text ROUNDTRIP to 64000 to get a FREE pocket pivot AND 10-pattern sprayer with purchase of any size Copper Head hose. (message & data rates may apply)___________________________During both NDEs, Riley describes traveling through a cosmic wormhole, receiving telepathic downloads of universal knowledge, reuniting with deceased loved ones, and hearing otherworldly music and trumpets.During her second and more profound NDE, Riley recounts being in the direct presence of God — described as bigger than the cosmos yet intimately personal — sitting in his lap, watching him expand the universe, and being shown heaven, hell, and a vision of the end of the world.She also describes a surprise encounter with Jesus after her husband baptized her in the bathtub just before she passed. Most remarkably, Riley returned to life after being clinically dead for 50 minutes,Video Version of This EpisodeRoundTripDeath.comDonate to this podcast: https://www.roundtripdeath.com/support/

00:00 FSM Changes Lives Fast 00:53 Podcast Intro And Hosts 02:16 The Magic Of Treatment 04:26 Quick Wins In Clinic 08:16 Progressive Disease Reality 11:43 Treat The Whole Person 18:17 Proof And Published Data 21:12 How People Find FSM 21:57 Why FSM Is Not TENS 25:33 The Book Origin Story 28:31 Writing Under Pressure 31:34 Prologue Inspiration 33:21 Sound of Courage 35:12 Energy and Next Steps 38:47 Page Turner Writing 40:18 Curiosity in Practice 42:06 Challenging Hopeless Diagnoses 45:50 ED Knee Breakthrough 49:06 Learning by Doing 50:23 Snoopy Side Quest 51:06 Conference and Wrap Up In contemporary medical practice, it's vital for practitioners to stay open to emerging therapies that offer new dimensions of healing, especially for cases deemed resistant or complex. Frequency Specific Microcurrent (FSM) is one such tool that is reshaping treatment paradigms through a nuanced understanding of energy, tissue regeneration, and integrated care. ### Embracing Change: Avoiding the Routine For medical professionals, it is not just about the basics of diagnosis and medication. The key lies in understanding whether your approach is injecting energy into both your practice and your patients, or merely echoing mundane outcomes. At the core of every treatment decision should be the consideration, "Does this give you energy, or does this drain your energy?" This grounds practitioners in ensuring that their methods are invigorating rather than depleting—for both themselves and their patients. ### The Power of Small Changes in Patient Outcomes FSM allows for significant life changes in a short span, effectively targeting inflammatory cytokines and alleviating nerve pain. Its transformative potential extends to treating conditions previously thought unmanageable. The ability to slow the progression of degenerative diseases such as ALS, MS, and Parkinson's has offered hope where little existed. Practitioners report significant improvements not just in day-to-day pain management but in enhancing a patient's quality of life. This is especially resonant in conditions like fibromyalgia and post-stroke recovery, where FSM can tap into the body's self-restorative capabilities, mediated strongly by the vagus nerve. ### The Multipronged Approach to Complex Conditions FSM challenges the notion of singular causality in ailments like concussion or Ehlers-Danlos syndrome. Often, the underlying issues necessitate a holistic approach, looking beyond the immediate manifestations to uncover deeper physiological and energetic blockages. It demands that practitioners treat the whole person, redefining the idea of intervention from acute response to integrated healing. In medical practice, even acknowledging a patient's background—be they a former athlete or someone with a chronic health condition—can illuminate pathways for unique interventions. Understanding the person, not just the disease, helps practitioners target the treatment more effectively. ### Learning and Adaptation The inherent beauty of this therapy lies in its dynamic nature, inviting practitioners to learn something new with each patient interaction. Every case is an opportunity to apply innovative thinking, continually questioning and challenging what medical norms have set as incurable. Sitting with the discomfort of not having all the answers and having the courage to keep questioning are essential traits for practitioners aiming to break new ground. Unlocking the power of FSM is not merely about applying the technology but understanding its broader implications for medical practice, offering a kind of salvation to those whose ailments have left them with little hope.  

In this listener-inspired episode, Dr. Linda Bluestein is joined by producer Aron from Human Content to address the fundamental truths she wishes every patient knew about hypermobility. Together, they explore the "invisible" yet highly visible nature of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), providing a roadmap to help patients stop gaslighting themselves and start advocating for better care. Dr. Bluestein breaks down complex concepts like central sensitization and the "sympathetic overdrive" often experienced by bendy bodies, while offering practical strategies for organizing medical documents and communicating effectively with practitioners. From debunking the myth of "growing pains" in teenagers to identifying environmental mast cell triggers, this conversation is a masterclass in shifting from a mindset of anxiety to one of curious, proactive detection. Takeaways: You Are Not Imagining It: Learn why hypermobility symptoms like pain, fatigue, and brain fog are frequently dismissed and how to validate your own physiological experience. The Interconnected Body: Understand how connective tissue disorders affect nearly every system, from gut motility to the "dishwasher of the brain" known as the glymphatic system. The "Reporter" Mindset: Discover how to present your symptoms objectively to doctors to avoid having physical complaints misattributed solely to anxiety. The HSD/hEDS Distinction: Clarify the differences between hypermobile EDS and hypermobility spectrum disorders, including the current reality of genetic testing. Mast Cells as the First Domino: Explore why stabilizing mast cells can have widespread benefits across the GI tract, skin, and nervous system Find the episode transcript here. Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

In this listener-inspired episode, Dr. Linda Bluestein is joined by producer Aron from Human Content to address the fundamental truths she wishes every patient knew about hypermobility. Together, they explore the "invisible" yet highly visible nature of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), providing a roadmap to help patients stop gaslighting themselves and start advocating for better care. Dr. Bluestein breaks down complex concepts like central sensitization and the "sympathetic overdrive" often experienced by bendy bodies, while offering practical strategies for organizing medical documents and communicating effectively with practitioners. From debunking the myth of "growing pains" in teenagers to identifying environmental mast cell triggers, this conversation is a masterclass in shifting from a mindset of anxiety to one of curious, proactive detection. Takeaways: You Are Not Imagining It: Learn why hypermobility symptoms like pain, fatigue, and brain fog are frequently dismissed and how to validate your own physiological experience. The Interconnected Body: Understand how connective tissue disorders affect nearly every system, from gut motility to the "dishwasher of the brain" known as the glymphatic system. The "Reporter" Mindset: Discover how to present your symptoms objectively to doctors to avoid having physical complaints misattributed solely to anxiety. The HSD/hEDS Distinction: Clarify the differences between hypermobile EDS and hypermobility spectrum disorders, including the current reality of genetic testing. Mast Cells as the First Domino: Explore why stabilizing mast cells can have widespread benefits across the GI tract, skin, and nervous system Find the episode transcript here. Go to ⁠cozyearth.com⁠ and use my Promo Code: BENDYBOGO Go to AirDoctorPro.com and use promo code BENDY_ to get UP TO $300 off today! Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

Cass Robinson's path to her first marathon was anything but straightforward. Growing up with undiagnosed Ehlers-Danlos syndrome, she spent years dealing with injuries, pain, and being told nothing was wrong. Running came in waves throughout her life, but it eventually became the place where she could process everything she had been through and start taking back control.In this episode, she shares how she trained with an unpredictable body, what it looked like to run her first marathon without time goals, and how her second marathon forced her to adapt in real time. It's a conversation about resilience, learning to trust yourself, and why you shouldn't quit on a bad day.Follow along with the show: 

What do Ehlers-Danlos syndrome and hypermobility have to do with IBS? A lot more than you might think.   In this episode, Rebecca Mass-Krajewski, Hypermobility & Ehlers-Danlos expert and I break down how connective tissue differences can impact the entire body—from digestion and motility to pain, sensitivity, and even the pelvic floor.   If you've ever felt like your symptoms don't quite "fit the box," this conversation will help connect the dots.   About our guest: Rebecca Mass-Krajewski, RN, MSN, FNP-BC, is a Hypermobility & Ehlers-Danlos expert, medical detective, and founder of The EDS Clinic. She specializes in the complex trifecta of Hypermobile Ehlers-Danlos Syndrome (hEDS), POTS, and Mast Cell Activation Syndrome (MCAS), uncovering overlooked drivers like autoimmune dysfunction, nervous system dysregulation, and gut imbalance Through her clinical work and speaking, Rebecca integrates the science of neuroplasticity, recognizing how the brain and autonomic nervous system can amplify pain, inflammation, and dysautonomia when stuck in chronic threat patterns. She leads a community where she troubleshoots complex cases live, giving members direct access to her clinical reasoning and real-time problem-solving. Rebecca is redefining what's possible for patients who have been dismissed or misdiagnosed while equipping practitioners nationwide to confidently unravel hypermobility-related challenges and deliver transformational care. Learn more + download your FREE Guide: How to Talk So Your Doctor Listens at www.theEDSclinic.com.    Thank you to our partners: @fodzyme is the world's first enzyme supplement specialized to target FODMAPs.   When sprinkled on or mixed with high-FODMAP meals, FODZYME's novel patent-pending enzyme blend breaks down fructan, GOS and lactose before they can trigger bloating, gas and other digestive issues.    With FODZYME, enjoy garlic, onion, wheat, brussels sprouts, beans, dairy and more — worry free! Discover the power of FODZYME's digestive enzyme blend and eat the foods you love and miss.   Visit fodzyme.com and save 20% off your first order with code THEGUTSHOW. One use per customer.   @mbiotaelemental is the next generation of the elemental diet. Developed with leading gastroenterologists and food scientists, it's the first formula that's both clinically effective AND genuinely easy to drink.   If you're looking for an option to support SIBO or your gut, mBIOTA Elemental may be one to consider. Learn more at mbiota.com and save 20% on their two-week protocol with code GUTIVATE.   @imodifyhealth is the leader in evidence-based, medically-tailored meal delivery offering Monash Certified low FODMAP, Gluten free, and Mediterranean meals - expertly crafted to help you achieve better symptom control AND improve overall health.    The best part? They make it easy by doing all prep work for you. Simply choose the meals you want, stock your fridge or freezer when meals arrive at your door, then heat and enjoy when you're ready. Delicious meals. Less stress. Complete peace of mind.   Check out modifyhealth.com and save 35% off your first order plus free shipping across the US with code: THEGUTSHOW.   Mentioned in this episode: MASTER Method Membership FREE IBS Warrior Summit Take the quiz: What's your poop personality?

In this episode of the Neuroveda Podcast for Complex Health, Gillian Ehrlich, family nurse practitioner certified in Ayurveda and functional medicine, welcomes one of Neuroveda Health's own clinicians, Brianna Cardenas, DMSc, PA-C, ATC, CSC1.Dr. Cardenas is a specialist in Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorders, and complex neurologic and immunologic comorbidities, including dysautonomia, mast cell activation syndrome, spinal CSF leaks, craniocervical instability, venous outflow disorders, tethered cord, adhesive arachnoiditis, and related pressure disorders. She sees patients at Neuroveda Health and provides remote consultations worldwide through her company, Healed and Empowered.Together, Gillian and Brianna explore one of the most complex and often misunderstood areas of connective tissue disease: how to differentiate common neurologic conditions in EDS and related connective tissue disorders. They discuss why these conditions are so often missed in conventional medicine, how connective tissue impacts the nervous system, and why patients are frequently shuffled between specialties without anyone seeing the full picture.This conversation covers the role of connective tissue, fascia, and the extracellular matrix in neurologic symptoms; how pressure disorders can show up as high pressure, low pressure, or fluctuating “spiky” patterns; why symptoms may worsen with position changes, head turning, lying flat, or being upright; the overlap between craniocervical instability, Eagle syndrome, Chiari-like presentations, CSF leaks, venous congestion, tethered cord, and arachnoiditis; why standard imaging is often inadequate for hypermobile patients; what symptom tracking can reveal; and practical ideas for diagnostic workup and imaging requests that may help patients and clinicians move closer to answers.Dr. Cardenas also shares how her own lived experience with severe chronic illness has shaped her clinical work and deepened her commitment to helping patients who so often fall through the cracks receive rigorous, compassionate, and collaborative care.In addition to her clinical work, Dr. Cardenas serves as an Assistant Professor in the MEDEX Northwest Physician Assistant Program at the University of Washington, where she teaches future physician assistants. She has lectured nationally and internationally on EDS and related comorbid conditions and is one of fewer than 100 certified fascial counterstrain practitioners worldwide.This episode is especially for patients, caregivers, and clinicians trying to make sense of symptoms that do not fit neatly into one specialty. It is an invitation to think more broadly, more collaboratively, and more compassionately about complex chronic illness.*Please note: This podcast is for educational purposes only and is not a substitute for individualized medical care. A podcast cannot replace a one-on-one medical visit, physical exam, or personalized diagnostic workup.

In this highly requested follow-up, Dr. Linda Bluestein and recurring co-host Dr. Dacre Knight welcome back neuro-ophthalmologist Dr. Eric Singman to dive deeper into the complex intersection of the eyes, the brain, and Ehlers-Danlos syndrome.  Dr. Singman shares a vital triage guide for navigating the world of eye specialists, helping listeners distinguish between routine vision needs and neuro-ophthalmic emergencies. The discussion explores how intracranial pressure fluctuations, cervical spine instability, and mast cell activation can all masquerade as primary eye problems, often leading patients down expensive and ineffective "snake oil" paths.  Whether you struggle with reading endurance, "glitter" vision, or the visual impacts of POTS, this episode provides a roadmap for finding credible care and understanding the "why" behind hypermobile vision symptoms. Takeaways: The Specialty Triage: Learn how to determine if you need a retina specialist, a cornea expert, or a neuro-ophthalmologist for new or chronic symptoms. Reading Hygiene and the Neck: Discover why your "bad neck" might be the true culprit behind reading fatigue and eye strain. The Pressure Spectrum: Understand how individuals with EDS can experience both high and low intracranial pressure, and why a "normal" spinal tap might be misleading. The "Bandaid" of Prisms: Dr. Singman explains why prisms are a temporary measure and why prescribing them without a diagnosis can be dangerous. Spotting Snake Oil: Identify the red flags of vision therapies that lack clinical data and primarily target the patient's pocketbook. Want more Dr. Eric Singman?https://www.umms.org/find-a-doctor/profiles/dr-eric-lowell-singman-md-1881654804 Want to learn more about the UVA EDS Center?For Appointments and Questions: RUVAEDSCenter@uvahealth.orgUVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinicUVA EDS FAQ: https://www.uvahealth.com/support/eds/faqUVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-healthWant more Dr. Dacre Knight?https://x.com/knidac Want more Dr. Linda Bluestein, MD?Website:  https://www.hypermobilitymd.com/YouTube: https://www.youtube.com/@bendybodiespodcastInstagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymdDr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. Learn more about your ad choices. Visit megaphone.fm/adchoices

In this highly requested follow-up, Dr. Linda Bluestein and recurring co-host Dr. Dacre Knight welcome back neuro-ophthalmologist Dr. Eric Singman to dive deeper into the complex intersection of the eyes, the brain, and Ehlers-Danlos syndrome.  Dr. Singman shares a vital triage guide for navigating the world of eye specialists, helping listeners distinguish between routine vision needs and neuro-ophthalmic emergencies. The discussion explores how intracranial pressure fluctuations, cervical spine instability, and mast cell activation can all masquerade as primary eye problems, often leading patients down expensive and ineffective "snake oil" paths.  Whether you struggle with reading endurance, "glitter" vision, or the visual impacts of POTS, this episode provides a roadmap for finding credible care and understanding the "why" behind hypermobile vision symptoms. Takeaways: The Specialty Triage: Learn how to determine if you need a retina specialist, a cornea expert, or a neuro-ophthalmologist for new or chronic symptoms. Reading Hygiene and the Neck: Discover why your "bad neck" might be the true culprit behind reading fatigue and eye strain. The Pressure Spectrum: Understand how individuals with EDS can experience both high and low intracranial pressure, and why a "normal" spinal tap might be misleading. The "Bandaid" of Prisms: Dr. Singman explains why prisms are a temporary measure and why prescribing them without a diagnosis can be dangerous. Spotting Snake Oil: Identify the red flags of vision therapies that lack clinical data and primarily target the patient's pocketbook. Find the episode transcript here. Want more Dr. Eric Singman?https://www.umms.org/find-a-doctor/profiles/dr-eric-lowell-singman-md-1881654804 Want to learn more about the UVA EDS Center?For Appointments and Questions: RUVAEDSCenter@uvahealth.orgUVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinicUVA EDS FAQ: https://www.uvahealth.com/support/eds/faqUVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-healthWant more Dr. Dacre Knight?https://x.com/knidac Want more Dr. Linda Bluestein, MD?Website:  https://www.hypermobilitymd.com/YouTube: https://www.youtube.com/@bendybodiespodcastInstagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymdDr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. Learn more about your ad choices. Visit megaphone.fm/adchoices

Send us Fan MailKasey welcomes listeners to the PT Snacks podcast for physical therapists and students and introduces a brief episode on Ehlers-Danlos syndrome (EDS). Kasey highlights common patient issues such as joint pain, dislocations, tendinitis, and muscle cramps, and discusses how physical therapy can improve quality of life through resistance training, proprioception, balance, aerobic and functional conditioning, pain neuroscience, and graded exposure to reduce kinesiophobia. 00:00 Welcome and Disclaimer00:18 Episode Focus on EDS01:21 EDS Types Overview02:20 Hypermobility EDS Basics02:33 Why Collagen Matters03:16 PT Goals Pain and Fear04:02 Training Approaches for hEDS04:31 Load Management and Recovery05:48 Lifestyle Factors Sleep Stress06:52 Wrap Up and ContactNeed CEUs?Unlock unlimited online courses, live webinars, and certification-prep programs with MedBridge. You'll get thousands of accredited, evidence-based courses. Use code PTSNACKSPODCAST at checkout to save over $100. Student? Use code PTSNACKSPODCASTSTUDENTSupport the showNeed CEUs? Unlock unlimited online courses, live webinars, and certification-prep programs with MedBridge. You'll get:Thousands of accredited, evidence-based courses across multiple specialties (PT, OT, AT, SLP) that count for state-license CEUs. Access anytime, from your office, phone, or home—perfect for busy clinicians. One annual subscription, no per-course fee. Special offers:Use code PTSNACKSPODCAST at checkout and save over $100.Students use code PTSNACKSPODCASTSTUDENT for a discounted annual plan.Studying for the NPTE? Check out PT Final Exam — they've helped thousands of students pass with confidence. Use code PTSnacks at checkout for a discount.Stay Connected!Follow so you never miss an episode. Send your questions via email to ptsnackspodcast@gmail.comJoin the email list ...

In this fascinating episode of Dr. Lotte: Science with Soul, I sit down with Dr. Linda Bluestein, an international speaker and leading expert on Hypermobility Spectrum Disorders (HSD), Ehlers-Danlos syndromes (EDS), Mast Cell Activation Syndrome (MCAS). With more than 20 years of medical experience, Dr. Bluestein brings a uniquely personal and professional perspective to this important conversation. Once an aspiring ballet dancer, her own experience with Ehlers-Danlos Syndrome changed the course of her life and ultimately led her to become a physician devoted to helping others who live with complex hypermobility conditions. Today she is widely respected for her work and for advancing awareness and research in hypermobility spectrum disorders, Ehlers-Danlos Syndromes, mast cell disorders, and performing arts medicine.

Severe back pain that refuses to respond to treatment may sometimes have a far more serious cause than most people realize. In this episode of Bendy Bodies, Dr. Linda Bluestein speaks with Dr. Forest Tennant, a longtime physician and researcher who has spent decades studying adhesive arachnoiditis, a rare but devastating inflammatory condition affecting the nerves in the lower spinal canal. Often misunderstood and frequently missed, arachnoiditis can cause extreme pain, neurologic dysfunction, and progressive disability. Dr. Tennant explains what the arachnoid membrane is, how inflammation can cause nerve roots to clump together, and why people with connective tissue disorders like Ehlers-Danlos syndrome may be at higher risk. The conversation explores common triggers, including spinal procedures and surgeries, along with the symptom patterns that may signal something more serious than typical back pain. The episode also dives into emerging treatment strategies, including anti-inflammatory protocols, neuroprotective therapies, peptides, and newer approaches aimed at reducing nerve inflammation and supporting tissue repair. For patients living with unexplained severe back pain, and clinicians searching for answers, this episode sheds light on a condition that remains widely underrecognized but increasingly understood. Takeaways: Adhesive arachnoiditis is an inflammatory condition affecting the arachnoid membrane in the spinal canal, which can cause nerve roots to stick together and disrupt nerve signaling. Severe back pain that doesn't respond to typical treatments may be a red flag, particularly when symptoms worsen with sitting or include unusual skin sensations like crawling or dripping. People with connective tissue disorders such as Ehlers-Danlos syndrome may have an increased risk due to underlying collagen abnormalities. Early recognition and treatment targeting inflammation and nerve health may help prevent progression, making awareness critical for both patients and clinicians. Effective pain management is essential because poorly controlled, high-impact chronic pain can significantly affect both quality of life and overall health over time. Want more Dr. Forest Tennant? https://arachnoiditishope.com/ Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

Severe back pain that refuses to respond to treatment may sometimes have a far more serious cause than most people realize. In this episode of Bendy Bodies, Dr. Linda Bluestein speaks with Dr. Forest Tennant, a longtime physician and researcher who has spent decades studying adhesive arachnoiditis, a rare but devastating inflammatory condition affecting the nerves in the lower spinal canal. Often misunderstood and frequently missed, arachnoiditis can cause extreme pain, neurologic dysfunction, and progressive disability. Dr. Tennant explains what the arachnoid membrane is, how inflammation can cause nerve roots to clump together, and why people with connective tissue disorders like Ehlers-Danlos syndrome may be at higher risk. The conversation explores common triggers, including spinal procedures and surgeries, along with the symptom patterns that may signal something more serious than typical back pain. The episode also dives into emerging treatment strategies, including anti-inflammatory protocols, neuroprotective therapies, peptides, and newer approaches aimed at reducing nerve inflammation and supporting tissue repair. For patients living with unexplained severe back pain, and clinicians searching for answers, this episode sheds light on a condition that remains widely underrecognized but increasingly understood. Takeaways: Adhesive arachnoiditis is an inflammatory condition affecting the arachnoid membrane in the spinal canal, which can cause nerve roots to stick together and disrupt nerve signaling. Severe back pain that doesn't respond to typical treatments may be a red flag, particularly when symptoms worsen with sitting or include unusual skin sensations like crawling or dripping. People with connective tissue disorders such as Ehlers-Danlos syndrome may have an increased risk due to underlying collagen abnormalities. Early recognition and treatment targeting inflammation and nerve health may help prevent progression, making awareness critical for both patients and clinicians. Effective pain management is essential because poorly controlled, high-impact chronic pain can significantly affect both quality of life and overall health over time. Want more Dr. Forest Tennant? https://arachnoiditishope.com/ Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

To Find Deplorable Janet--> https://open.spotify.com/show/3K5Xi9LugxNdI06GXSIjAp?si=m5hPD7OsS6eim1jACk84ewTo sign up for our Patreon go to-> Patreon.com/cultofconspiracypodcast To find the Meta Mysteries Podcast---> https://open.spotify.com/show/6IshwF6qc2iuqz3WTPz9Wv?si=3a32c8f730b34e79 To Join the Cajun Knight Patreon---> Patreon.com/cajunknight To Find The Cajun Knight Youtube Channel---> click herehttps://flavorsforest.com/cult/Become a supporter of this podcast: https://www.spreaker.com/podcast/cult-of-conspiracy--5700337/support.

The Radical Neurodivergent Act of Stopping Before You're Exhausted Patricia (she/her) shares what it's like when life is actuall calm. Without drama or big stories to tell, she reflects on learning to honor her energy limits. Patricia talks about pacing physical activity, noticing the urge to push past fatigue, and practicing self-compassion when her body needs rest. She also shares everyday moments—from kayaking at sunrise to navigating workouts and dog walks—while exploring what it means for autistic and neurodivergent people to find the "sweet spot" between doing enough and doing too much. WHAT YOU'LL HEAR IN THIS EPISODE ·       Sometimes life is peaceful and stable—and that can make content creation surprisingly hard. ·       Many creatives and neurodivergent people are used to generating insight during moments of stress or conflict. ·       Learning to honor calm periods can be a form of nervous system healing. ·       Patricia reflects on getting back into kayaking and being on the water, which brings joy and grounding. ·       Physical energy levels can change over time, especially with chronic illness or post-exertional malaise. ·       Pacing physical activity is an ongoing learning process. ·       The urge to "do just one more thing" can push the body past its limits. ·       Choosing to stop while still feeling okay can prevent a crash later. ·       Post-exertional malaise (PEM) can cause significant fatigue after physical or cognitive exertion. ·       Some autistic and neurodivergent people experience PEM, especially with hypermobile Ehlers-Danlos syndrome (hEDS) or related conditions. ·       Finding the sweet spot between movement and rest is an ongoing experiment. ·       Overexertion can lead to days of fatigue that disrupt daily functioning. ·       Practicing restraint—doing less than your maximum—can actually support long-term wellbeing. ·       Asking for help, like getting assistance with moving a kayak, is part of sustainable energy management. ·       Even small tasks can become energy-intensive when managing chronic fatigue. ·       Devices and metrics (like watches and headphones) can sometimes create frustration rather than helpful feedback. ·       Everyday moments—like figuring out how to climb out of a pool—can become humorous reflections on aging and energy limits. ·       Patricia shares updates about family, travel plans, and caring for pets while balancing energy. ·       OCD thoughts still pop up, but she practices noticing and naming them rather than getting pulled into them. ·       Life doesn't always need drama to be meaningful—sometimes calm and connection are enough. SOUND BITES · "I create my best content when there's drama—but I don't actually want any drama." · "Everything is going really well right now… and I just don't have a lot to talk about." · "I'm really practicing holding back a little so there's something left in the tank." · "It's that balance—enough stimulation but not too much, enough movement but not too much."   SENSITIVITY IS NOTHING TO APOLOGIZE FOR; IT'S HOW YOUR BRAIN IS WIRED You are not broken. You were shaped by systems that weren't built for you. You deserve rest, joy, and support exactly as you are. PODCAST HOST Patricia Young (she/her) was a Licensed Clinical Social Worker for over 17 years, but she is now exclusively providing coaching. She knows what it's like to feel like an outcast, misfit, and truthteller.  Learning about the trait of being a Highly Sensitive Person (HSP), then learning she is AuDHD with a PDA profile, OCD and RSD, helped Patricia rewrite her history with a deeper understanding, appreciation, and a sense of self-compassion.  She created the podcasts Unapologetically Sensitive and Unapologetically AuDHD to help other neurodivergent folks know that they aren't alone, and that having a brain that is wired differently comes with amazing gifts, and some challenges.  Patricia works online globally working individually with people, and she teaches Online Courses for neurodivergent folks that focus on understanding what it means to be a sensitive neurodivergent. Topics covered include: self-care, self-compassion, boundaries, perfectionism, mindfulness, communication, and creating a lifestyle that honors you Patricia's website, podcast episodes and more: www.unapologeticallysensitive.com   LINKS   To write a review in itunes: click on this link https://itunes.apple.com/us/podcast/unapologetically-sensitive/id1440433481?mt=2 select "listen on Apple Podcasts" chose "open in itunes" choose "ratings and reviews" click to rate the number of starts click "write a review"   Website--www.unapologeticallysensitive.com Facebook-- https://www.facebook.com/Unapologetically-Sensitive-2296688923985657/ Closed/Private Facebook group Unapologetically Sensitive-- https://www.facebook.com/groups/2099705880047619/ Instagram-- https://www.instagram.com/unapologeticallysensitive/ Youtube-- https://www.youtube.com/channel/UCOE6fodj7RBdO3Iw0NrAllg/videos?view_as=subscriber Tik Tok--https://www.tiktok.com/@unapologeticallysensitiv Unapologetically AuDHD Podcast-- https://unapologeticallysensitive.com/unapologeticallyaudhd/ e-mail-- unapologeticallysensitive@gmail.com Show hashtag--#unapologeticallysensitive Music-- Gravel Dance by Andy Robinson www.andyrobinson.com  

Episode Notes Andrew sits down with writer and disability activist Sloan Harlow for an honest, unfiltered conversation about navigating polyamory, kink, dating, grief, and joy as a disabled person. Sloan opens up about living with hypermobile Ehlers-Danlos syndrome, bipolar one disorder, and a constellation of other conditions, sharing wisdom on solo polyamory, accessible kink, medical ableism, and why the disability community needs more grit + so much more! Follow them here: www.instagram.com/disabledparagraphs Episode Sponsors Do you wanna turn b*tt stuff up a notch. Go to bvibe.com and use code AFTERDARK to receive 20% off orders of $100 (including bundles, discounted items and more). Disability content creation doesn't have to be hard. Follow @seated.perspectives on Instagram to learn how to make content creation a gentle, easy, accessible experience. Are you looking for attendant care when you need it at your convenience? Check out your team, on tap www.whimble.ca Get 15% off your next purchase of sex toys, books and DVDs by using Coupon code AFTERDARK at checkout when you shop at trans owned and operated sex shop Come As You Are www.comeasyouare.com Order Notes From a Queer Cripple and hire him to speak on it by e-mailing andrew@andrewgurza.com US: https://us.jkp.com/products/notes-from-a-queer-cripple Canada: https://www.ubcpress.ca/notes-from-a-queer-cripple Support the show with a donation: https://patreon.com/disabilityafterdark This podcast is powered by Pinecast.

This episode starts with TikTok's updated Terms of Service, specifically the part where apps want to know where you are at all times, and quickly spirals into a much bigger question: did we accidentally sign up for the surveillance state… or was it always inevitable? Kristin and I debate privacy, inevitability, pessimism, preparedness, and whether refusing to participate actually protects you, or just makes life harder. Somewhere in there, we revisit COVID lockdown memories, the great toilet paper shortage, and why Kristin still believes in go-bags… everywhere. Then things get personal. We talk about Milo, our very large, very inbred standard poodle, and his recurring seizures. I do what every human doctor does best: Google outside my scope, panic quietly, and admit I don't know what I'm talking about when it comes to dogs. We walk through idiopathic epilepsy, toxins, brain issues, genetics, and the complicated question of when a dog actually needs lifelong seizure medication. Finally, we crack open First Aid and land on Ehlers-Danlos syndrome — collagen, hypermobility, bruising, joint issues, blood vessels, aneurysm anxiety, and what it's like to live with a genetic condition that medicine still doesn't fully understand. It's nerdy, personal, and surprisingly validating. Takeaways: Digital Privacy Isn't Theoretical: Location tracking, data collection, and why opting out isn't always realistic. Preparedness vs Panic: Go-bags, pessimism, and how couples balance very different risk tolerances. Dog Seizures Are Terrifying: Idiopathic epilepsy is common, but deciding when to treat isn't simple. Pet Insurance Confusion: Why even doctors don't know what's actually worth paying for. Ehlers-Danlos Reality: Collagen types, hypermobility, bruising, and living with a condition medicine still struggles to define. — To Get Tickets to Wife & Death: You can visit Glaucomflecken.com/live  We want to hear YOUR stories (and medical puns)! Shoot us an email and say hi! knockknockhi@human-content.com Can't get enough of us? Shucks. You can support the show on Patreon for early episode access, exclusive bonus shows, livestream hangouts, and much more! –⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ http://www.patreon.com/glaucomflecken⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠  Also, be sure to check out the newsletter: https://glaucomflecken.com/glauc-to-me/ If you are interested in buying a book from one of our guests, check them all out here: https://www.amazon.com/shop/dr.glaucomflecken If you want more information on models I use: Anatomy Warehouse provides for the best, crafting custom anatomical products, medical simulation kits and presentation models that create a lasting educational impact.  For more information go to Anatomy Warehouse DOT com. Link: https://anatomywarehouse.com/?aff=14 Plus for 15% off use code: Glaucomflecken15 -- A friendly reminder from the G's and Tarsus: If you want to learn more about Demodex Blepharitis, making an appointment with your eye doctor for an eyelid exam can help you know for sure. Visit ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠http://www.EyelidCheck.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ for more information. Go to Cozy Earth now for a Buy One Get One Free Pajama Offer from 1/25-2/8! Yes, go to ⁠⁠⁠cozyearth.com⁠⁠⁠ they are doing a BOGO pajama promo. Just use my Code: KNOCKKNOCKBOGO Produced by⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Human Content⁠⁠⁠ Learn more about your ad choices. Visit megaphone.fm/adchoices

What makes Lyme disease resolve quickly in some people but turn into a life-altering chronic illness in others? In this episode, world-leading immunologist Dr. Michal “Mikki” Tal, Principal Scientist at MIT, explains what her team is discovering through the MAESTRO Study — the largest clinical research project in MIT's history and the first of its kind to include real Lyme patients in a multi-system biological analysis. Dr. Tal's work sits at the intersection of immunology, bioengineering, and women's health, uncovering how infections like Lyme and COVID can cause persistent inflammation, immune miscommunication, and hormonal imbalance. Through MAESTRO, she's mapping how recovery breaks down — and what can be done to predict, prevent, and ultimately reverse chronic illness.

Why are people with Ehlers-Danlos syndromes, POTS, and mast cell disorders so frequently misdiagnosed, or dismissed entirely? In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by Dr. Dacre Knight, Medical Director of the UVA Health EDS and Hypermobility Disorders Center, for a wide-ranging conversation about why complex, multisystem conditions continue to fall through the cracks of modern medicine. Together, they explore how siloed healthcare systems, time-limited visits, and overreliance on “normal” labs and imaging contribute to years of delayed diagnosis and unnecessary suffering. The discussion unpacks why patients are often labeled as anxious, functional, or “too complex,” how pattern recognition breaks down when symptoms span multiple systems, and why early diagnosis could prevent much of the downstream complexity clinicians later struggle to manage. Dr. Knight also explains how diagnostic frameworks like the EDS–POTS–MCAS triad can be helpful and where they risk oversimplifying reality. This episode offers a candid look at the gaps in current diagnostic thinking and a more thoughtful, patient-centered approach to evaluating complex chronic illness, one that prioritizes listening, curiosity, and clinical humility. Takeaways: When diagnosis is delayed, complexity isn't inevitable — it's created. “Normal” tests don't mean normal lives. Pain, fatigue, and dysfunction can exist long before labs catch up. Many patients aren't anxious until they're repeatedly dismissed. Mislabeling symptoms often becomes the real diagnosis delay. Multisystem conditions don't reveal themselves through checklists — they emerge through patterns clinicians are trained to overlook. Sometimes the most powerful intervention isn't a test or a treatment — it's listening earlier, longer, and with curiosity. Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Dacre Knight? https://x.com/knidac Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

Why are people with Ehlers-Danlos syndromes, POTS, and mast cell disorders so frequently misdiagnosed, or dismissed entirely? In this episode of Bendy Bodies, Dr. Linda Bluestein is joined by Dr. Dacre Knight, Medical Director of the UVA Health EDS and Hypermobility Disorders Center, for a wide-ranging conversation about why complex, multisystem conditions continue to fall through the cracks of modern medicine. Together, they explore how siloed healthcare systems, time-limited visits, and overreliance on “normal” labs and imaging contribute to years of delayed diagnosis and unnecessary suffering. The discussion unpacks why patients are often labeled as anxious, functional, or “too complex,” how pattern recognition breaks down when symptoms span multiple systems, and why early diagnosis could prevent much of the downstream complexity clinicians later struggle to manage. Dr. Knight also explains how diagnostic frameworks like the EDS–POTS–MCAS triad can be helpful and where they risk oversimplifying reality. This episode offers a candid look at the gaps in current diagnostic thinking and a more thoughtful, patient-centered approach to evaluating complex chronic illness, one that prioritizes listening, curiosity, and clinical humility. Takeaways: When diagnosis is delayed, complexity isn't inevitable — it's created. “Normal” tests don't mean normal lives. Pain, fatigue, and dysfunction can exist long before labs catch up. Many patients aren't anxious until they're repeatedly dismissed. Mislabeling symptoms often becomes the real diagnosis delay. Multisystem conditions don't reveal themselves through checklists — they emerge through patterns clinicians are trained to overlook. Sometimes the most powerful intervention isn't a test or a treatment — it's listening earlier, longer, and with curiosity. Find the episode transcript here. Want to learn more about the UVA EDS Center? For Appointments and Questions: RUVAEDSCenter@uvahealth.org UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health Want more Dr. Dacre Knight? https://x.com/knidac Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

On this episode, we are joined by Saba Kamal, an occupational therapist and Certified Hand Therapist who has taken a special interest in treating patients with Ehlers-Danlos syndrome (EDS) and hypermobility. She shares with us how patients are diagnosed with EDS or hypermobility and how we as upper extremity therapists can educate these patients on joint protection, stability and lifelong management. Saba Kamal is an occupational therapist and a Certified Hand Therapist. She graduated from OT School in India and is currently certified to practice in the US, UK and Europe. Saba currently resides and practices as a healthcare entrepreneur and hand and upper extremity therapist in the US. She has over three decades of experience spanning clinical practice, healthcare education and professional leadership. She has delivered talks at national and international conferences, collaborating closely with surgeons and therapists to advance the field of hand and upper extremity rehabilitation.Saba's contributions include leadership roles in professional societies (initiated and chaired HTA-CA conferences 2011-2019), the development of innovative treatment approaches, and dedicated mentorship to students and clinicians. Most recently, she sold her successful therapy practices and completed a Healthcare Leadership certificate at Johns Hopkins University. Saba has also written various articles and is the author of Treating Musicians as Athletes available on Amazon and B&N.In addition to continuing to educate therapists through her Hand-On courses with Advanced Rehab Seminars, Saba is also working on several hand therapy-related inventions aimed at bringing innovative solutions to the marketThe views and opinions expressed in the Hands in Motion podcast are those of the guests and do not necessarily reflect the official policy or position of ASHT. Appearance on the podcast does not imply endorsement of any products, services or viewpoints discussed"

Soph Myers-Kelley and his mom, René Myers, have always been close. As of five years ago, they also share a diagnosis: the connective tissue disorder Ehlers-Danlos Syndrome. Soph and René were diagnosed one year apart – Soph was 25; René was 60. EDS explained symptoms they'd both been experiencing for decades, including waking up with jaw or shoulder dislocations and having chronic pain.The two talk with Anita about how their diagnoses began a new chapter of their lives, including the decision to move in together last summer.Meet the guests:- Soph Myers-Kelley is a medical librarian at East Carolina University- René Myers is Soph's mom and a retired educatorRead the transcript | Review the podcast on your preferred platformFollow Embodied on Instagram Leave a message for EmbodiedPlease note: This episode originally published February 20, 2025.

Jameela Jamil (The Good Place, Elio) joins us this week for a wildly honest conversation about chronic illness, passive self destruction and why she is done biohacking her life. Jameela opens up about living with Ehlers Danlos syndrome, surviving childhood abuse, the nervous breakdown that turned her into a truth teller and how EMDR therapy completely rewired her relationship to trauma and fear. We also get into her war on beauty and the unbelievable way a school bully pushed her straight into The Good Place. Thank you to our sponsors:

In this episode of The 10 Ninety Podcast, Mason sits down with Brooke Pando for her second appearance on the show. Brooke is the mother of London "Lundy" Pando, who lives with Ehlers-Danlos syndrome type 6A—a degenerative condition that leaves her body unable to support her muscles and bones, making every day uncertain. London, now 13, survived a massive stroke in utero at 34 weeks that liquefied three-quarters of her brain, and doctors never expected her to live past her first few hours. Since Brooke's last appearance, her mother Margo Ann Nielsen Erickson passed away suddenly from metastatic pancreatic cancer just three months after diagnosis. Brooke shares the devastating experience of losing her mother—London's best friend and their family's primary caregiver—and how it has intensified the anxiety of knowing London could die at any moment. Brooke opens up about the dream she had months before her mother's diagnosis that warned her of the loss to come, the whirlwind of becoming her mother's full-time caregiver, and the shock of her mother's sudden death despite being on hospice. She talks about the heartbreaking day she and her father went to the cemetery to pick out burial plots—not just for her mother, but five spots total, knowing London would one day be buried there too. Together with Mason, Brooke discusses the impossible weight of living in constant fear of losing her daughter while simultaneously grieving her mother, the guilt she feels for not being as happy as London despite London's daily suffering, and the strain that anticipatory grief puts on her marriage to Blake and her other two children. She shares London's remarkable spirit—a child who calls people five times a day just to talk, who loves Trolls and The Greatest Showman, and who remains the happiest person despite living in constant physical pain. Brooke and Mason have an unflinchingly honest conversation about the questions that haunt them both: Where do our loved ones go when they die? Why do signs and dragonflies appear when we need them most, then disappear? How do you keep living when you know the worst is still coming? And why does grief feel so all-consuming, so relentless, so impossible to escape? It's a raw conversation about anticipatory grief, the loneliness of waiting for tragedy, and the brutal reality that sometimes the only thing we can do is live—because that's what the people we love most would want us to do.

HHS Secretary Robert F. Kennedy recently unveiled a new food pyramid and dietary guidelines for Americans that emphasize high-quality protein, dairy, healthy fats, vegetables, and fruits. Whole grains are downgraded, and processed foods and added sugars are discouraged.“We've been consuming this ultra-processed food, which I call human pet food,” says Dr. Shawn Baker. A former orthopedic surgeon and world champion athlete, he's the author of “The Carnivore Diet” and co-founder of the online clinic Revero.“A lot of our food has become very similar to recreational drugs in the way we use and abuse them,” he says.Eating a lot of addictive, ultra-processed food—high in carbs, sugars, and seed oils—drives inflammation and can lead to obesity, diabetes, arthritis, cardiovascular problems, gut malfunction, depression, and cancers, he explains.In our in-depth interview, he explains how and why the adoption of low-carb, high-fat diets reduces inflammation and can even reverse chronic diseases such as diabetes and cardiometabolic disease.There is even significant evidence that such diets can be used therapeutically for neurological and mental health issues, he says.One of those low-carb, high-fat diets is the ketogenic diet. But what happens when you take keto one step further and go on the carnivore diet?“Carnivore is basically a diet consisting primarily of animal products. So it would be meat. It would be fish. It would be eggs. It would be dairy products,” he says. This means no plant products at all.The carnivore diet is not for everyone, but many people suffering from debilitating autoimmune diseases have healed themselves with such a diet, he says. Mikhaila Peterson has famously documented her transformative experience on an even more restricted version of this diet called the “lion diet.”In our in-depth interview, we discuss many more questions regarding food as medicine and the benefits of a protein-heavy diet, including:- Why people on ketogenic or carnivore diets experience something called ‘keto calm' or ‘zero carb zen.'- Why going on the carnivore diet does not harm your nutritional intake, contrary to what many may think.- Why such diets can help reverse inflammatory bowel disease, Tourette syndrome, and hypermobility, also known as Ehlers-Danlos syndrome.It's time for Americans to stop simply relying on America's “disease management system” of drugs and pharmaceuticals, he argues, and instead take their health into their own hands.Views expressed in this video are opinions of the host and the guest, and do not necessarily reflect the views of The Epoch Times.

Moyamoya Syndrome Stroke Recovery: Judy Kim Cage's Comeback From “Puff of Smoke” to Purpose At 4:00 AM, Judy Kim Cage woke up in pain so extreme that she was screaming, though she doesn't remember the scream. What she does remember is the “worst headache ever,” nausea, numbness, and then the terrifying truth: her left side was shutting down. Here's the part that makes her story hit even harder: Judy already lived with Moyamoya syndrome and had undergone brain surgeries years earlier. She genuinely believed she was “cured.” So when her stroke began, her brain fought the reality with everything it had. Denial, resistance, bargaining, and delay. And yet, Judy's story isn't about doom. It's about what Moyamoya syndrome stroke recovery can look like when you keep going, especially when recovery becomes less about “getting back to normal” and more about building a new, honest, meaningful life. What Is Moyamoya Syndrome (And Why It's Called “Puff of Smoke”) Moyamoya is a rare cerebrovascular disorder where the internal carotid arteries progressively narrow, reducing blood flow to the brain. The brain tries to compensate by creating fragile collateral vessels, thin-walled backups that can look like a “puff of smoke” on imaging. Those collateral vessels can become a risk. In Judy's case, the combination of her history, symptoms, and eventual deficits marked a devastating event that would reshape her life. The emotional gut punch wasn't only the stroke itself. It was the psychological whiplash of thinking you're safe… and discovering you're not. The First Enemy in Moyamoya Stroke Recovery: Denial Judy didn't just resist the hospital. She resisted the idea that this was happening at all. She'd been through countless ER visits in the past, having to explain Moyamoya to doctors, enduring tests, and then being told, “There's nothing we can do.” That history trained her to expect frustration and disappointment, not urgent help. So when her husband wanted to call emergency services, her reaction wasn't logical, it was emotional. It was the reflex of someone who'd been through too much. Denial isn't weakness. It's protection. It's your mind trying to buy time when the truth is too big to hold all at once. The Moment Reality Landed: “I Thought I Picked Up My Foot” In early recovery, Judy was convinced she could do what she used to do. Get up. Walk. Go to the bathroom. Handle it. But a powerful moment in rehab shifted everything: she was placed into an exoskeleton and realized her brain and body weren't speaking the same language. She believed she lifted her foot, then saw it hadn't moved for several seconds. That's when she finally had to admit what so many survivors eventually face: Recovery begins the moment you stop arguing with reality. Not because you “give up,” but because you stop wasting energy fighting what is and start investing energy into what can be. The Invisible Battle: Cognitive Fatigue and Energy Management If you're living through Moyamoya syndrome stroke recovery, it's easy for everyone (including you) to focus on the visible stuff: walking, arms, vision, and balance. But Judy's most persistent challenge wasn't always visible. It was cognitive fatigue, the kind that makes simple tasks feel impossible. Even something as ordinary as cleaning up an email inbox can become draining because it requires micro-decisions: categorize, prioritize, analyze, remember context, avoid mistakes. And then there's the emotional layer: when you're a perfectionist, errors feel personal. Judy described how fatigue increases mistakes, not because she doesn't care, but because the brain's bandwidth runs out. That's a brutal adjustment when your identity has always been built on competence. A practical shift that helped her Instead of trying to “finish” exhausting tasks in one heroic sprint, Judy learned to do small daily pieces. It's not glamorous, but it reduces cognitive load and protects energy. In other words: consistency beats intensity. Returning to Work After a Moyamoya Stroke: A Different Kind of Strength Judy's drive didn't disappear after her stroke. If anything, it became part of the recovery engine. She returned slowly, first restricted to a tiny number of hours. Even that was hard. But over time, she climbed back. She eventually returned full-time and later earned a promotion. That matters for one reason: it proves recovery doesn't have one shape. For some people, recovery is walking again. For others, it's parenting again. For others, it's working again without losing themselves to burnout. The goal isn't to recreate the old life perfectly. The goal is to build a life that fits who you are now. [Quote block mid-article] “If you couldn't make fun of it… it would be easier to fall into a pit of despair.” Humor Isn't Denial. It's a Tool. Judy doesn't pretend everything is okay. She's not selling toxic positivity. But she does use humor like a lever, something that lifts the emotional weight just enough to keep moving. She called her recovering left hand her “evil twin,” high-fived it when it improved, and looked for small “silver linings” not because the stroke was good, but because despair is dangerous. Laughter can't fix Moyamoya. But it can change what happens inside your nervous system: tension, stress response, mood, motivation, and your willingness to try again tomorrow. And sometimes, tomorrow is the whole win. Identity After Stroke: When “Big Stuff Became Small Stuff” One of the most profound shifts Judy described was this: the stroke changed her scale. Things that used to feel huge became small. Every day annoyances lost their power. It took something truly significant to rattle her. That's not magical thinking. That's a perspective earned the hard way. Many survivors quietly report this experience: once you've faced mortality and rebuilt your life from rubble, you stop wasting precious energy on what doesn't matter. Judy also found meaning in mentoring others because recovering alone can feel like walking through darkness without a map. Helping others doesn't erase what happened. But it can transform pain into purpose. If You're In Moyamoya Syndrome Stroke Recovery, Read This If your recovery feels messy… if you're exhausted by invisible symptoms… if the old “high achiever” version of you is fighting the new reality… You're not broken. You're adapting. And your next step doesn't have to be dramatic. It just has to be honest and repeatable: Simplify the day Protect energy Build routines Accept help Use humor when you can And find one person who understands Recovery is not a straight line. But it is possible to rebuild a life you actually want to live. If you want more support and guidance, you can also explore Bill's resources here: recoveryafterstroke.com/book patreon.com/recoveryafterstroke This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. Judy Kim Cage on Moyamoya Stroke Recovery, Cognitive Fatigue, and Finding Purpose Again She thought Moyamoya was “fixed.” Then a 4 AM headache proved otherwise. Judy's comeback will change how you see recovery. Judy’s Instagram Highlights: 00:00 Introduction and Guest Introduction 01:43 Life Before the Stroke 11:17 The Moment of the Stroke 19:56 Moyamoya Syndrome Stroke Recovery 25:36 Cognitive Fatigue and Executive Functioning 34:50 Rehabilitation Experience 42:29 Using Humor in Recovery 46:59 Finding Purpose After Stroke 54:19 Judy’s Book: Super Survivor 01:05:20 Conclusion and Final Thoughts Transcript: Introduction and Guest Introduction Bill Gasiamis (00:00) Hey there, I’m Bill Gasiamis and this is the Recovery After Stroke podcast. Before we jump in a quick thank you to my Patreon supporters. You help cover the hosting costs after more than 10 years of doing this independently. And you make it possible for me to keep creating episodes for stroke survivors who need hope and real guidance. And thank you to everyone who supports the show in the everyday ways too. The YouTube commenters, the people leaving reviews on Spotify and Apple. The folks who bought my book and everyone who sticks around and doesn’t skip the ads. I see you and I appreciate you. Now I want you to hear this. My guest today, Judy Kim Cage, woke up at 4am with the worst headache of her life and she was so deep in denial that she threatened to divorce her husband if he called 911. Judy lives with Moyamoya syndrome, a rare cerebrovascular condition often described as the puff of smoke on imaging. She’d already had brain surgeries and believed she was cured until the stroke changed everything. Judy also wrote a book called Super Survivor and it’s all about how denial, resistance and persistence can lead to success and a better life after stroke. I’ll put the links in the show notes. In this conversation, we talk about Moyamoya Syndrome, stroke recovery, the rehab moment where reality finally landed. and what it’s like to rebuild life with cognitive fatigue and executive functioning challenges and how Judy used humor and purpose to keep moving forward without pretending recovery is easy. Let’s get into it. Judy Kim Cage, welcome to the podcast. Life Before Moyamoya Syndrome Judy Kim Cage (01:43) Thank you so much, Bill Bill Gasiamis (01:45) Thanks for being here. Can you paint us a picture of your life before the stroke? What were your days like? Judy Kim Cage (01:51) Hmm. Well, my life before the stroke was me trying to be a high achiever and a corporate nerd. I think so. I think so. I, you know, I was in the Future Business Leaders of America in high school and then carried that forward to an accounting degree. Bill Gasiamis (02:04) Did you achieve it? Judy Kim Cage (02:20) and finance and then ⁓ had gone to work for Deloitte and the big four. ⁓ And after that moved into ⁓ internal audit for commercial mortgage and then risk and banking and it all rolled into compliance, which is a kind of larger chunk there. But ⁓ yeah, I was living the corporate dream and Traveling every other week, basically so 50 % of the time, flying to Columbus, staying there, and then flying back home for the weekend and working in a rented office for the week after. And I did that for all of 2018. And then in 2019 is when my body said, hang on a second. And I had a stroke. Bill Gasiamis (03:17) How many hours a week do you think you were working? Judy Kim Cage (03:19) Well, not including the treble, ⁓ probably 50-55. Bill Gasiamis (03:26) Okay. Judy Kim Cage (03:26) Oh, wish, that wasn’t that that really wasn’t a ton compared to my Deloitte days where I’d be working up to 90 hours a week. Bill Gasiamis (03:37) Wow. in that time when you’re working 90 hours a week. Is there time for anything else? you get to squeeze in a run at the gym or do you get to squeeze in a cafe catch up with a friend or anything like that? Judy Kim Cage (03:51) There are people that do. think, yeah, I mean, on certain particular weekends and my friends, a lot of my friends were also working with me. So there was time to socialize. And then, of course, we would all let off some steam, you know, at the pub, you know, at the end of a week. But ⁓ yeah, I remember on one of my very first jobs, I had been so excited because I had signed up to take guitar lessons and I was not able to leave in order to get there in time. ⁓ so that took a backseat. Bill Gasiamis (04:40) Yes, it sounds like there’s potentially lots of things that took a backseat. Yeah, work tends to be like that can be all consuming and when friendships especially are within the work group as well, even more so because everyone’s doing the same thing and it’s just go, Judy Kim Cage (04:44) Yeah, definitely. Absolutely. We started as a cohort essentially of, I want to say 40 some people all around the same age. And then, you know, as the years ticked by, we started falling off as they do in that industry. Bill Gasiamis (05:19) Do you enjoy it though? Like, is there a part of you that enjoys the whole craziness of all the travel, all the hours, the work stuff? it? Is it like interesting? Judy Kim Cage (05:31) Yeah, I do love it. I actually do love my job. I love compliance. I love working within a legal mindset with other lawyers. And basically knowing that I’m pretty good at my job, that I can be very well organized, that it would be difficult even for a normal healthy person and challenging and that I can do well there. And yeah, no, was, when I had put in a year, when I was in ⁓ acute therapy, ⁓ I had spoken with a number of students and they had interviewed me as a patient, but also from the psych side of it all, ⁓ asking, well, what does it feel like to all of a sudden have your life stop? And I said, well, ⁓ and things got a bit emotional, I said, I felt like I was at the top of my game. I had finally achieved the job that I absolutely wanted, had desired. ⁓ I felt like I’d found a home where I was now going to retire. And all of a sudden that seems like it was no longer a possibility. Bill Gasiamis (06:55) So that’s a very common thing that strokes have over say who I interviewed. They say stuff like I was at the top of my game and there’s this ⁓ idea or sense that once you get to the top of the game, you stay there. There’s no getting down from the top of the game and that it just keeps going and keeps going. And, I think it’s more about fit. sounds like it’s more about fit. Like I found a place where I fit. found a place where I’m okay. or I do well, where I succeed, where people believe in me, where I have the support and the faith or whatever it is of my employers, my team. Is that kind of how you describe on top of your game or is it something different? Judy Kim Cage (07:41) I think it was all of those things, ⁓ but also, you know, definitely the kindness of people, the support of people, their faith in my ability to be smart and get things done. But then also ⁓ just the fact that I finally said, okay, this was not necessarily a direct from undergrad to here. However, I was able to take pieces of everything that I had done and put it together into a position that was essentially kind of created for me and then launched from there. So I felt as though it was essentially having climbed all of those stairs. So I was at the top. Yeah. you know, looking at my Lion King kingdom and yeah. Bill Gasiamis (08:43) just about to ascend and, and it was short lived by the sound of it. Judy Kim Cage (08:49) It was, it was, it was only one year beforehand, but I am actually still at the company now. I ⁓ had gone and done ⁓ well. So I was in the hospital for a few months and following that. Well, following the round of inpatient and the one round of outpatient, said, okay, I’m going back. And I decided, I absolutely insisted that I was going to go back. The doctor said, okay, you can only work four hours a week. I said, four hours a week, what are you talking about? ⁓ But then I realized that four hours a week was actually really challenging at that time. ⁓ And then ⁓ I climbed back up. was, you know, I’m driven by deadlines and… ⁓ I was working, you know, leveraging long-term disability. And then once I had worked too many hours after five years, you know, I graduated from that program, or rather I got booted out of the program. ⁓ And then a year later, I was actually, well, no, actually at the end of the five years I was promoted. So, ⁓ after coming back full time. Bill Gasiamis (10:20) Wow. So this was all in 2019, the stroke. You were 39 years old. Do you remember, do you remember the moment when you realized there was something wrong? We’ll be back with more of Judy’s remarkable story in just a moment. If you’re listening right now and you’re in that stage where recovery feels invisible, where the fatigue is heavy, your brain feels slower. or you’re trying to explain a rare condition like Moyamoya and nobody really gets it. I want you to hear this clearly. You’re not failing. You’re recovering. If you want extra support between episodes, you can check out my book at recoveryafterstroke.com slash book. And if you’d like to help keep this podcast going and support my mission to reach a thousand episodes, you can support the podcast at Patreon by visiting patreon.com/recoveryafterstroke. All right, let’s get back to Judy. The Moment of the Stroke Judy Kim Cage (11:16) Yes, although I was in a lot of denial. ⁓ So we had just had dinner with ⁓ my stepdaughter and her husband ⁓ and ⁓ we were visiting them in Atlanta, Georgia. ⁓ And we said, OK, we’ll meet for brunch tomorrow. You know, great to see you. Have a good night. It was four in the morning and I was told I woke up screaming and I felt this horrible, horrible worst headache ever ⁓ on the right side. And I think because I have, I have Moyamoya syndrome, because of that and because I had had brain surgeries, ⁓ 10 years or back in December of 2008, I had a brain surgery on each side. And that at the time was the best of care that you could get. You know, that was essentially your cure. And so I thought I was cured. And so I thought I would never have a stroke. So when it was actually happening, I was in denial said there’s no way this could be happening. But the excess of pain, ⁓ the nausea and ⁓ it not going away after throwing up, the numbness ⁓ and then the eventual paralysis of my left side definitely ⁓ was evidence that something was very very wrong. Bill Gasiamis (13:09) So it was four in the morning, were you guys sleeping? Judy Kim Cage (13:14) ⁓ yeah, we were in bed. Yep. And yeah, I woke up screaming. According to my husband, I don’t remember the screaming part, but I remember all the pain. Bill Gasiamis (13:24) Yeah, did he ⁓ get you to hospital? Did he the emergency services? Judy Kim Cage (13:30) I apparently was kind of threatening to divorce him if he called 911. Bill Gasiamis (13:38) Wow, that’s a bit rough. Oh my lord. Judy Kim Cage (13:41) I know. mean, that could have been his out, but he didn’t. Bill Gasiamis (13:45) There’s worse things for a human to do than call 911 and get your support. Like marriages end for worse things than that. Judy Kim Cage (13:53) because I’ve been to the ER many, many, many times. And because of the Moyamoya, you would always, it being a rare disease, you would never be told, well, you would have to explain to all the doctors about what Moyamoya was, for one. For two, to say if I had a cold, for instance, that Moyamoya had nothing to do with it. Bill Gasiamis (14:11) Wow. Judy Kim Cage (14:19) But also, you know, they would give me an MRI, oof, the claustrophobia. I detested that. And I said, if you’re getting me into an MRI, please, please, please, a benzodiazepine would be incredible. Or just knock me out, whatever you need to do. But I’m not getting into that thing otherwise. But, you know, they would take the MRI, read it. and then say, hours and hours and hours later, there’s nothing we can do. The next course of action, if it was absolutely necessary, would be another surgery, which would have been bur holes that were drilled into my skull to relieve some sort of pressure. ⁓ In this particular case, the options were to ⁓ have a drain put in my skull. and then for me to be reliant on a ventilator. Or they said, you can have scans done every four hours and if the damage becomes too great, then we’ll move on. Otherwise, we’ll just keep tabs on it, essentially. Bill Gasiamis (15:37) Yeah. So I know that feeling because since my initial blade in February, 2012, I’ve lost count how many times I’ve been to the hospital for a scan that was unnecessary, but necessary at the time because you, you know, you tie yourself up in knots trying to work out, is this another one? Isn’t it another one? Is it, it, and then the only outcome that you can possibly come up with that puts your mind at ease and everybody else around you is let’s go and get a scan and then, and then move on with life. Once they tell you it was, ⁓ it was not another bleed or whatever. Yeah. However, three times I did go and three times there was a bleed. So it’s the whole, you know, how do you wrap your head around like which one isn’t the bleed, which one is the bleed and It’s a fricking nightmare if you ask me. And I seem to have now ⁓ transferred that concern to everybody else who has a headache. On the weekend, my son had a migraine. And I tell you what, because he was describing it as one of the worst headaches he had ever had, I just went into meltdown. I couldn’t cope. And it was like, go to the hospital, go to the hospital, go to… He didn’t go, he’s an adult, right? Makes his own decisions. But I was worried about it for days. And it wasn’t enough that even the next few days he was feeling better because I still have interviewed people who have had a headache for four or five or six days before they went to hospital and then they found that it was a stroke. it’s just become this crazy thing that I have to live with now. Judy Kim Cage (17:26) I essentially forced Rich to wait 12 hours before I called my vascular neurologist. And once I did, his office said, you need to go to the ER. And I said, okay, then that’s when I folded and said, all right, we’ll go. ⁓ And then, ⁓ you know, an ambulance came. Bill Gasiamis (17:35) Wow. Judy Kim Cage (17:53) took me out on a gurney and then took me to a mobile stroke unit, which there was only one of 11, there were only 11 in the country at the time. And they were able to scan me there and then had me basically interviewed by a neurologist via telecall. And this was, you know, before the days of teams and zoom and that we all tested out ⁓ from COVID. ⁓ yeah, that’s. Bill Gasiamis (18:35) That’s you, So then you get through that initial acute phase and then you wake up with a certain amount of deficits. Judy Kim Cage (18:37) Yeah. my gosh. ⁓ Well, yeah, absolutely. ⁓ Massive amounts of pain ⁓ from all the blood absorbing back into the brain. ⁓ The left side, my left side was paralyzed. My arm fell out of my shoulder socket. So it was hanging down loosely. ⁓ I had dropped foot, so I had to learn to walk again. Double vision and my facial group on the left and then. Bluff side neglect. Bill Gasiamis (19:31) Yeah. So, and then I see in our, in your notes, I see also you had diminished hearing, nerve pain, spasticity, cognitive fatigue, ⁓ bladder issues. You’d also triggered Ehlers-Danlos symptoms, whatever that is. Tell me about that. What’s that? Moyamoya Syndrome Stroke Recovery Judy Kim Cage (19:56) So I call myself a genetic mutant because the Moyamoya for one at the time I was diagnosed is discovered in 3.5 people out of a million. And then Ehlers-Danlos or EDS for short is also a genetic disorder. Well, certain versions are more genetic than others, but it is caused by a defect in your collagen, which makes up essentially your entire body. And so I have hypermobility, the blood, I have pots. So my, my blood basically remains down by my feet, it pulls at my feet. And so not enough of it gets up to my brain, which also could, you know, have affected the moimoya. But Essentially, it creates vestibular issues, these balance issues where it’s already bad enough that you have a stroke, but it’s another to be at the risk of falling all the time. Yeah. Or if you get up a little too fast, which I still do to this day, sometimes I’ll completely forget and I’ll just bounce up off the sofa to get myself a drink and I will sway and all of a sudden Bill Gasiamis (21:07) Yeah. Judy Kim Cage (21:22) onto the sofa or sit down right on the floor and say, okay, why did I not do the three-step plan to get up? ⁓ But sometimes it’s just too easy to forget. Bill Gasiamis (21:37) Yeah, yeah. You just act, you just move out of well habit or normal, normal ways that people move. And then you find yourself in a interesting situation. So I mean, how, how do you deal with all of that? Like you, you go from having experienced more and more by the way, let’s describe more and more a little bit, just so people know what it is. Judy Kim Cage (22:02) Absolutely. So, my way is a cerebrovascular disorder where your internal carotid progressively constricts. So for no known reason, no truly known reason. And so because it keeps shrinking and shrinking, not enough brain, blood gets to your brain. So what the brain decides to do to compensate is it will form these collateral vessels. And these collateral vessels, which there are many of them usually, you know, the longer this goes on, ⁓ they have very thin walls. So due to the combination of the thin walls, and if you have high blood pressure, these walls can break. And that is what happened in my case. ⁓ Well, the carotids will continue to occlude, but what happens is, ⁓ least with the surgery, they took my temporal artery, removed it from my scalp, had taken a plate off of my skull and stitched that. temporal artery onto my brain so that it would have a separate source of blood flow so that it was no longer reliant on this carotid. So we know that the carotid, sorry, that the temporal artery won’t fail out. ⁓ So usually, ⁓ and this was my surgery was actually done at Boston Children’s Hospital ⁓ by the man who pioneered the surgery. And he was basically head of neurosurgery at Harvard Medical School and Boston Children’s because they more often find this in children now. And the sooner they find it, the fewer collateral vessels will form once the surgery is performed. Bill Gasiamis (24:17) Okay, so the long-term risk is that it’s decreased, the risk of a blade decreases if they do the surgery early on too. I love that. Judy Kim Cage (24:25) The rest. But I was diagnosed at the age of 29. So I had quite a while of these collateral vessels forming in what they call a puff of smoke that appears on the MRI. ⁓ And that is what, you know, Moyamoya essentially means in Japanese, is translated to in Japanese, it’s puff of smoke. Bill Gasiamis (24:50) Wow, you have been going through this for a while then. So I can understand your whole mindset around doctors, another appointment, another MRI. Like I could totally, ⁓ it makes complete sense. You you’re over it after a certain amount of time. Yeah, I’m the same. I kind of get over it, but then I also have to take action because you know what we know what the previous Judy Kim Cage (25:07) Absolutely. Bill Gasiamis (25:19) outcome was and now you’re dealing with all of these deficits that you have to overcome. Which are the deficits that you’re still dealing with that are the most, well, the most sort of prolonged or challenging or whatever you want to call them, whatever. Cognitive Fatigue and Executive Functioning Judy Kim Cage (25:34) The most significant, I guess it’s the most wide ranging. But it is. ⁓ Energy management and cognitive fatigue. ⁓ I have issues with executive functioning. ⁓ Things are, you know, if I need to do sorting or filing. ⁓ That actually is. one of my least favorite things to do anymore. Whereas it was very easy at one point. ⁓ And now if I want to clean up my inbox, it is just a dreaded task. ⁓ And so now I’ve learned that if I do a little bit of it every day, then I don’t have, it doesn’t have to take nearly as long. ⁓ Bill Gasiamis (26:26) What it’s dreaded about it is it making decisions about where those emails belong, what to do to them or. Judy Kim Cage (26:33) Oh, no, it’s just the time and energy it takes to do it. It drains me very quickly. Because you have to evaluate and analyze every line as you’re deciding what project it belongs to. And there’s a strategic way to do it in terms of who you normally deal with on each project, etc. etc. This chunk of time, calendar dates you’ve worked on it, etc. But, know, That might by the time I get to this tedious task, I’m not thinking about it strategically. ⁓ Yeah, I’m just dragging each individual line item into a little folder. ⁓ So, ⁓ but yeah, like the cognitive deficits. gosh. mean, I’m working on a computer all day. I am definitely a corporate desk rat or mouse, you know, on the wheel. ⁓ And a lot of Excel spreadsheets and just a lot of very small print and sometimes I get to expand it. ⁓ And it really is just trying not to, well, the job involves making as few errors as you possibly can. Bill Gasiamis (28:01) Yeah. Judy Kim Cage (28:02) ⁓ Now when I get tired or overwhelmed or when I overdo it, which I frequently frequently do, ⁓ I find out that I’ve made more errors and I find out after the fact usually. So nothing that’s not reversible, nothing that’s not fixable, but it still is pretty disheartening for a perfectionist type such as myself. Bill Gasiamis (28:30) Wow. So the perfectionism also has to become something that you have to deal with even more so than before, because before you were probably capable of managing it now, you’re less capable. yeah, I understand. I’m not a perfectionist by all means. My wife can tend to be when she’s studying or something like that. And she suffers from, you know, spending Judy Kim Cage (28:46) the energy. Bill Gasiamis (29:00) potentially hours on three lines of a paragraph. Like she’s done that before and I’ll just, and I’ve gone into the room after three hours and her, and her going into the room was, I’m going to go in and do a few more lines because she was drained or tired or, you know, her brain wasn’t working properly or whatever. I’m just going to go do three more lines and three hours later, she’s still doing those three lines. It’s like, wow, you need to get out of the, you need to get out. need to, we need to. break this because it’s not, it’s not good. So I totally get what it’s liked to be like that. And then I have had the cognitive fatigue where emails were impossible. Spreadsheets forget about it. I never liked them anyway. And they were just absolutely forget about it. Um, I feel like they are just evil. I feel like the spreadsheets are evil, you know, all these things that you have to do in the background, forget about it. That’s unbelievable. So, um, What was it like when you first sort of woke up from the initial stroke, got out of your unconscious state and then realized you had to deal with all of this stuff? I know for some time you were probably unable to speak and were you ⁓ trapped inside your body? Is that right or? Judy Kim Cage (30:19) I was in the ICU. I was paralyzed on the left side, so I was not able to get up, not really able to move much. ⁓ I was not speaking too much, definitely not within the first week. I was in the ICU for 10 days. ⁓ And yeah, I just wasn’t able to do much other than scream from the beam. ⁓ And then I, once I became more aware, I insisted that I could get up and walk to the bathroom myself. I insisted that I could just sit up, get up, do all the things that I had done before. And it being a right side stroke as well, you know, I think helps contribute to the overestimation or the… just conceitedness, guess, and this self-confidence that I could just do anything. Yes, absolutely. And I was told time and time again, Judy, can’t walk, Judy, can’t go to the bathroom, Judy, you can’t do these things. And I was in absolute denial. And I would say, no, I can, I can get up. And meanwhile, I would say that Bill Gasiamis (31:30) Delusion Judy Kim Cage (31:51) husband was so afraid that I was going to physically try to get up and fall over, which would not have been good. ⁓ And so, you know, there was, there were some expletives involved. ⁓ And, ⁓ and then eventually once I was out of the ICU, ⁓ I didn’t truly accept that I couldn’t walk until Bill Gasiamis (32:00) but. Judy Kim Cage (32:20) one of the PT students had put me into an exoskeleton and I realized that my foot did not move at all, you know, like a full five seconds after I thought I picked it up. And I said, wait, hang on, what’s going on here? And I said, ⁓ okay, I guess I have to admit that I can’t walk. And then I can’t, I can’t sit upright. I can’t. You know, and like you had mentioned, you know, I had lost the signals from my brain to my bladder. They were slow or whatnot. And I was wetting the bed, like a child at a sleepover. And I was pretty horrified. And that happened for, you know, pretty much my, pretty much all my time at Kratie, except I got the timing down. ⁓ eventually, which was fantastic. But then when I moved to post-acute, ⁓ then I had to learn the timing all over again, just because, you know, of different, rules being different, the transfers being different, and then, ⁓ you know, just ⁓ the timing of when somebody would answer the call button, et cetera. Bill Gasiamis (33:45) Yeah. Do you, what was it like going to rehab? I was really excited about it. I was hanging out because I learned that I couldn’t walk when the nurse said to me, have you been to the toilet yet? And I said, no, I hadn’t been to the toilet. We’re talking hours after surgery, you know, maybe within the first eight or nine hours, something like that. And I went to put my left foot down onto the ground. She was going to help me. She was like a really petite Asian. framed lady and I’m and I’m probably two feet taller than her, something like that, and double her weight. And then she said, just put your hand on my shoulder and then I’ll support you. So I did that. I put my hand on her shoulder, stepped onto my left foot and then just collapsed straight onto the ground and realized, ⁓ no, I’m not walking. I can’t walk anymore. And then I was then waiting. hanging out to go to rehab was really excited about that. ⁓ What was it like for you? Moyamoya Syndrome Stroke Rehabilitation Experience Judy Kim Cage (34:48) Initially, well, do you so you mean. ⁓ Bill Gasiamis (34:56) Just as in like, were you aware that you could ⁓ improve things? Were you kind of like, we’re gonna overcome this type of stuff? Because you had a lot more things to overcome than I did. So it’s like, how is that? How do you frame that in your head? Were you the kind of person who was like, ⁓ rehab’s around the corner, let’s do that? Or were you kind of reluctant? Judy Kim Cage (35:19) It was a combination of two things. One, I had been dying to go home. I said, I absolutely, why can’t I go home? I was in the hospital for three weeks before we moved to the rehab hospital. And once we had done that, I was there basically for the entire weekend and then they do evaluations on Tuesday. And so I was told on Tuesday that I would be there for another at least four to six weeks. And so that was even before therapies really began. So there was a part of me saying, I don’t care, let me go home and I’ll do outpatient every day and everything will be fine. At least I get to go home. But then the other part. Bill Gasiamis (35:52) Thanks. Judy Kim Cage (36:11) said, okay, well, once I realized I was stuck and that I couldn’t escape, I couldn’t go anywhere, ⁓ I actually, I did love therapy. ⁓ I loved being in speech therapy, being in OTE, being in PT even, because my girls were fantastic. They were so caring, so understanding. They made jokes and also laughed at mine, which was even better. And when you’re not in therapy, especially on the weekends, you’re just in your room by yourself. And you’re not watching TV because that input is way too heavy. Listening to music. maybe a little bit here and there. ⁓ You know, all the things that you know and love are nowhere to be found, you know, really. ⁓ Yeah, absolutely. Yeah, yeah. And I get claustrophobic in the MRI, in the hospital, et cetera. yeah. Bill Gasiamis (37:14) Oscillating. Yeah. I was on YouTube, searching YouTube videos that were about neuroplasticity, retraining the brain, that kind of stuff, meditations, type of thing. That really helped me on those weekends. The family was always around, but there was delays between family visits and what have you that couldn’t be there that entire time. ⁓ So I found that very interesting. And you know, rehab was a combination of frustration and excitement, excitement that I was getting the help, frustration that things weren’t moving as quickly as I wanted. ⁓ And I even remember the occupational therapist making us make breakfast. And I wouldn’t recommend this breakfast for stroke survivors. I think it was cereal and toast or something like that. And I remember being frustrated, why are they making me make it? My left side doesn’t work. Like I can barely walk. I cannot carry the glass with the tea or anything like that to me. What are these people doing? They should be doing it for us. I wasn’t aware. I wasn’t aware that that was part of the therapy. I just thought they were making us make our own bloody breakfast. I thought these people are so terrible. And it took a while for me to clue on like, ⁓ okay. Judy Kim Cage (38:44) you Bill Gasiamis (38:52) They want me to be able to do this when I get home. ⁓ understood. Took a while. I’m thick like that. Judy Kim Cage (39:00) Fortunately, wasn’t made to cook until close to the end. And also during outpatient, I was tasked to make kind of a larger, you know, crock pot dinner so that, you know, I could do that at home. Meanwhile, the irony of it all is that. I can cook and I used to love cooking, but I don’t do it nearly as much as I used to. So that skill did not really transfer over. ⁓ I have Post-it notes up by the microwave that tell me right hand only because if I use my left hand, the temperature differential I will burn myself ⁓ without even realizing it or even reaching for a certain part of a pan that I think is going to be safe and is somewhat heat resistant. And I touch it and then poof, well, you know, get a burn. So there are post-it notes everywhere. There’s one by the front door that says, watch the steps, because I had a couple of times flown down them and gashed my knee. Bill Gasiamis (40:13) Yeah. Judy Kim Cage (40:26) And it’s amazing actually how long a Post-It note with its temporary stick will stay up on a wall. Bill Gasiamis (40:35) Well, there’s another opportunity for you there, like do a project, ⁓ a longevity of Post-it Notes project, see how long we can get out of one application. Judy Kim Cage (40:46) Yeah, well, this one actually, so I think it was three months after I had moved in, which would have been 10 months into my stroke recovery. And that’s when I fell down these steps. And that’s when I put up the Post-It note. it has been, a piece of tape has been added to it. but it only fell down, I think, a couple of years ago. Bill Gasiamis (41:18) Yeah. So 3M need to shift their entire focus. I feel like 3M. Yeah. I think 3M needs to have a permanent ⁓ post-it note application, but easy to remove. if I want to take it down, like it’s permanent once I put it up, but if I want to take it down, it’s still easy to remove and it doesn’t ruin my paint or leave residue. Judy Kim Cage (41:44) They do actually have that tech. have it for, they call it command. It’s what they have for the hooks for photos and whatnot. And then if you pull the tab and then release it, it will come off and leave the wall undamaged, but it will otherwise stay there for a long. Bill Gasiamis (42:04) Yes, yes, I think you’re right. Most of the time it works, yes. Okay, well, we’re moving on to other things. You’ve overcome a lot of stuff. You’re dealing with a lot of stuff. And yet, you have this disposition, which is very chirpy and happy, go lucky. Is it real, that disposition, or is it just a facade? Using Humor in Moyamoya Syndrome and Stroke Recovery Judy Kim Cage (42:29) No, no, it’s real. It’s real. ⁓ I think I’ve always ⁓ tried to make light of things. ⁓ Humors, probably my first defense mechanism. ⁓ And I think that helped out a lot ⁓ in terms of recovery. And also, ⁓ it put my therapist in a great mood. Also, because not many people did that apparently. You know, most people curse them off or, you know, were kind of miserable. And there were times when I was miserable too. Absolutely. But, but I probably took it out more on my husband than I did the staff. And he, and he would call, you know, I said, I was so mean to you, Rich. was so mean to you. And he said, yeah, you were nicer to the nurses than to me. And I. I apologized for it, but at the same time I’m like, yeah, but sometimes, bud, you are so annoying. Bill Gasiamis (43:33) You had it coming. Judy Kim Cage (43:34) Yeah. Why are you so overprotective? Why do you point out every crack in the sidewalk? Why do you know, you still say I have to stop to tie up my hair when we’re walking on the sidewalk, you know, because you’re not supposed to do two things at once. ⁓ Yeah. So I felt as though I would make jokes all the time. I when my left hand would start to regain function. I called it my evil twin because I didn’t even recognize that it was mine. But then I would give it a high five every time I started gaining function back. And I would say things like, yeah, hey, evil twin, congrats. Or ⁓ I would say, I guess I don’t have to clean the house anymore. I don’t have to use my left hand to dust. I’m not capable of doing it. So why do it? Bill Gasiamis (44:29) Yeah. Judy Kim Cage (44:30) And I’m like, let’s always look for the silver lining. And it would usually be a joke. But, you know, if you couldn’t make fun of it or think about the ridiculousness of it, then I think it would be easier to fall into a pit of despair. Bill Gasiamis (44:48) I agree with you and laughing and all that releases, know, good endo, good endorphins and good neurochemicals and all that kind of stuff really does improve your blood pressure. It improves the way that your body feels, you know, the tightness in your muscles and all that kind of stuff. Everything improves when you laugh and you have to find funny things about a bad situation to laugh at, to kind of dial down the seriousness of the situation. can you know, really dial it down just by picking something strange that happened and laughing at it. I found myself doing that as well. And I’m similar in that I would go to rehab and they would, you know, we would chit chat like I am now with you and would have all sorts of conversations about all kinds of things. And the rehab was kind of like the, the, it was like the vessel, you know, to talk shit, have a laugh. ⁓ you know, be the clown of the rehab room. And I get it, everyone’s doing it tough, but it lightened the mood for everybody. You know, was, it’s a hard thing. You know, imagine it being just constantly and forever hard. And it was like, I don’t want to be that guy and wish they have fun as well. And, and I think my, my, my tough times were decreased as a result. Like, you know, those stuff, mental and emotional days, they, they come, but they go. then you have relief from them. And I think you need relief. Judy Kim Cage (46:23) Absolutely. Otherwise, just could feel perpetual and just never ending. ⁓ And why or how could you possibly survive feeling that way? Bill Gasiamis (46:39) Yeah. So who are you now? as in your, how does your idea of who you are sort of begin to shift after the initial acute phase and now six years in, almost seven years into your stroke journey? Finding Purpose After Stroke Judy Kim Cage (46:59) I think I am. I’m pretty confident in who I am, which is funny. ⁓ I ⁓ actually lean more into making more jokes or ⁓ lean into the fact that things don’t, they don’t have nearly the importance or the impact that you would otherwise think. ⁓ One of my sayings, I guess I say all the, you know, how they say don’t sweat the small stuff. my big stuff, like big stuff became small stuff, you know. So it would have to be something pretty big in order for me to really, really, you know, think about it. And a lot of the little things, you know, the nuisances in life and stuff, would usually just laugh or if I tripped or something, then I would just laugh at it and just keep moving on. ⁓ And I think, you know, It’s funny because some people will say, ⁓ gosh, like stop, you know, there is toxic positivity, right? And there’s plenty of that. And ⁓ I stay away from that, I think. But when I try to give people advice or a different outlook, ⁓ I do say, well, you you could think of it this way, you know. It’s not all sunshine and rainbows and flowers and, you know, care bears, but it is, you know, but it, but you can pull yourself out of a situation. You can try to figure out a way to work around it. You can, you know, choose differently for yourself, you know, do things that you love. You know, you’re only given a certain amount of limited time on the earth. So how do you want to spend it? And if you are on your deathbed, you know, would you have, do you have any regrets? You know, like you did read the books about, you know, that, ⁓ why am I forgetting? Doctors ⁓ that perform palliative care and, you know, they’ve written books about you know what people’s regrets have been after, know, once they are about to pass and you know, that not taking action was a regret. You know, like why didn’t I do this? Or why didn’t I do this? Why didn’t I try this? Like really, what would have been the downfall to trying something? ⁓ And I find that, you know, aside from just naturally being able to see things to laugh at or, or positive sides of things. ⁓ I tried, like, I wish that people could experience that without having gone through what we went through. ⁓ but that’s virtually impossible. I think. Bill Gasiamis (50:18) I think it’s impossible, totally, 100 % impossible because everybody thinks they’re doing okay until they’re not. You just cannot prevent somebody from going through something by taking the learning first. The learning has to come second. Sad as that is. Judy Kim Cage (50:39) ⁓ Well, and we all think we’re invincible to a large extent. ⁓ But ⁓ I think what I’ve been trying to do or me now, I’ve always, you know, volunteered in various ways, but now I take and hold extra value in being a mentor for other stroke patients. Bill Gasiamis (51:03) Yeah, yeah, that’s Judy Kim Cage (51:04) And for, you know, individuals that even just come up to me and talk about all of their medical problems, it doesn’t matter if it’s circulated or not, you know, it’s medically they’re like, there’s some white matter on my MRI, what do think I should do? I’m like, it’s not that simple of an answer. I think you should go to the doctor. Get on a list. Bill Gasiamis (51:29) Yeah. Your journey seems like you’re growing through this adversity, like as in it’s very post-traumatic growth type of experience here. Something that I talk about on my book, the unexpected way that a stroke became the best thing that happened. Not something that I recommend people experience to get to the other side of that, of course. But in hindsight, like it’s all those things that you’re describing. Judy’s Book: Super Survivor And I look at the chapters because in fact, you’ve written a book and it’s going to be out after this episode goes live, which is awesome. And the book that you’ve written is called Super Survivor. And indeed that is a fitting title. Indeed it is. How denial, resistance and persistence can lead to success and a better life after stroke. Right? So just looking at some of the chapters, there’s a lot of overlap there, right? And one of the chapters that there’s overlap in is the volunteering and purpose. I’ve got parts of my book that specifically talk about doing stuff for other people and how that supports recovery and how the people who said that stroke was the best thing that happened to them, the ones that I interviewed to gather the data, one of the main things that they were doing was helping other people, volunteering in some way, shape or form. And that helped shape their purpose in life. and their meaning in life. And it’s how I got there as well. It was like, okay, I’m gonna go and prevent stroke. I’m gonna go talk on behalf of the Stroke Foundation. We’re gonna raise awareness about what stroke is, how to take action on stroke, what to do if somebody’s having a stroke. And I started to feel like I gained a purpose in my life, which was gonna to not allow other people to go through what I went through. And then, With that came public speaking and then with that came the podcast and then the purpose grew and it became really ⁓ all encompassing. It’s like, wow, like I know what my mission is. I didn’t seek to find it. I stumbled across it and the chapter in my book is called stumbling into purpose because you can’t think it up. You just have to take action and then bam, bam, it appears. Like, is that your experience? Judy Kim Cage (53:53) ⁓ Well, so much of my identity had been wrapped up in my occupation. ⁓ And so when, you know, the stroke first happened, et cetera, but then as time has passed, ⁓ yeah, I’ve absolutely found more meaning in providing comfort to other stroke patients. whether it’s because they see me as inspiring that I was able to recover so quickly or that I was able to go back to work, you know, permanently. And just to give them hope, really. And ⁓ when I was in acute, I felt as though like, We do so much of the recovery alone ⁓ and there isn’t a ton of, you know, of course our therapists are fantastic and they’re, you know, they’re loving and they’re caring. But in terms of having to make it through, you know, certain darkness alone or, ⁓ you know, just feeling sorry for yourself even sometimes, or feeling like, hey, I can do everything, but nobody’s encouraging that. because they think it’s dangerous. ⁓ I had wished that, you know, there were more people who could understand ⁓ what survival and then recovery was, you know, truly like. And so I had read that in a number of books before hearing people tell me their stories in person because Emotionally, I absorbed too much of it. ⁓ I wanted to, I think I passed that five-year survival mark of the 26.7%, which I know varies for everybody. ⁓ at the same time, I said, wow, I did, I made it to the other side, I beat these odds. I think I wanted to keep it secret from all the people I worked with. which I still have actually, it won’t be for too much longer. ⁓ But ⁓ just being able to share that and to be vulnerable and to say all the deficits that I have and what I have overcome, ⁓ I think it’s also given people some hope that they can, if she was able to do it, then maybe it isn’t as tough as I think it is. Bill Gasiamis (56:43) Anyone can. Yeah, I love that. That’s kind of my approach to, you know, I’m just a average, humble, normal, amazing guy. You could do it too. You know, I could, I could teach you to what you need to do is learn. ⁓ but that’s true. It’s that it’s that we are, I get, I get people come on the podcast going, I’m so nervous to meet you. You’re on the, I’m on your podcast. Dude, you don’t know who I am. Like if you think I’m the podcast guy, you’ve got no idea. I’m in the back of my, in my garden, in a shed. what was something that’s meant to be a shed that looks like a studio and amazing and all this kind of stuff. Like, dude, I’m just. Judy Kim Cage (57:29) would not have known if you hadn’t told me. Bill Gasiamis (57:32) That’s right, because looks can be deceiving and that ideas that we get of people are just, you know, they’re just not accurate until we get to spend time with people and understand them. And I always try and play down who I am so that people can see that I am just a regular guy who went through this and had no, no equipment. had no ⁓ knowledge. had no skills overcoming learning. Like I just, I picked up what I needed when I could just so that I can stumble through to the next hurdle and stumble through that one and then keep going. I really want people to understand that even the people who appear to be super fabulous at everything, like they’re just not, nobody is that, everyone is just doing their best they can. Even the guy who’s got more money than you, a bigger house, whatever, a better investment, all that stuff, they’re all faking it until shit hits the fan and then they’ve got to really step up to be who they are. You know, that’s what I find. But attitude, mindset, ⁓ approach, know, laughing, doing things for other people all help. They are really important steps, you know. The other chapter that kind of. made me pay attention and take note ⁓ was you talk about the night everything changed, complicated medical history, lifesavers, volunteering and purpose, the caregivers, ⁓ easing back into life, which I think is a really important chapter, returning to work, which is really important. then chapter nine, life after stroke continued. That kind of really is something that made me pay attention because that’s exactly what it is, right? It’s life after stroke. It’s like a continuation. It’s a never ending kind of ⁓ unattainable thing. Judy Kim Cage (59:27) It just keeps rolling on. doesn’t stop. You know, even if you’ve gone through a hardship and overcome it, it doesn’t mean that life stops. You’ve got to keep learning these lessons over and over and over again. Even if you don’t want to learn them, however stubborn you are. ⁓ And I, you know, I one thing that I had written about was that I had resented ⁓ you know, what I had gone through for a little while. I said, why do I still have to learn the same lessons that everybody else has to learn? You know, if I’ve gone through this kind of transcendental thing, why do I still have to learn, you know, these other things? But then I realized that I was given the opportunity ⁓ from surviving, was given another chance to be able to truly realize what it was like to be happy and to live. And I’d never, I mean, I had, I had been depressed, you know, for an anxious for years. And, you know, I’ve been in therapy for years and, ⁓ you know, it really wasn’t truly until kind of getting this push of the fast forward button on learning lessons that it truly became happy, like true, true happiness. And I said, wow, that was the gift. And then to try to pass that on. Bill Gasiamis (1:01:10) It’s a pretty cool life hack. A shit way to experience it, but a pretty cool life hack. Judy Kim Cage (1:01:15) Yeah, yeah, yeah, definitely don’t I don’t recommend it I don’t Bill Gasiamis (1:01:20) Yeah. You get the learning in a short amount of time instead of years of years of wisdom and developing and learning and overcoming, which you avoided up until your first, you know, 38 years. And then, you know, you then, and then you kind of all of a sudden go, okay, well, I really have to buckle down and do these, ⁓ these modules of learning and I’ve got no choice. And I was the same. ⁓ and I have my days, I have my Good days, bad days, and I even recently had a bit of a day where I said to my wife, I got diagnosed with high blood pressure, headaches, migraines, a whole bunch of stuff, and then just tomorrow, I’m I’ve had enough. Why do I need to to be diagnosed with more things? Why do I need to have more medical appointments? Enough, it’s enough. I need to stop this stuff. It’s not fun. And then it took me about half a day to get over myself and go, well, I shouldn’t be here, really. Technically, Somebody has three blades in the brain, you know, I don’t know, maybe 50 years ago, they weren’t gonna make it. So now you’ve made it also high blood pressure. If you had high blood pressure 50 years ago, there was nothing to do to treat it. It was just gonna be high until you had a heart attack or ⁓ a brain aneurysm burst or something. And it’s like, I get to live in a time when interventions are possible and it is a blip on the radar. Like just all you do is take this tablet and you’re fine. Not that I revert to give me the tablet solution. I don’t, I’m forever going under the underlying cause. I want to know what the underlying cause is trying to get to the bottom of all of that. But in the meantime, I can remain stable with this little tablet and ⁓ decrease the risk of another brain hemorrhage. So it’s cool, know, like whatever. And that kind of helps me get through the, why me days, you know, cause They’re there, they come, they turn up, especially if it’s been one day after the next where things have been really unwell and we’ve had to medical help or whatever. When it’s been kind of intense version of it, it’s like, okay, I don’t want any more of this. So I get the whole, I’ve experienced the whole spectrum in this last 13, 14 years. We’re coming up to, I think the 20th or 21st, I think is my, maybe the 25th of my anniversary of my brain surgery. Jeez, I’ve come a long way. It’s okay. It’ll be like 11 years since my brain surgery. A lot of good things have happened since then. We got to live life for another 13 years, 11 years. I keep forgetting the number, it doesn’t matter. Yeah. Judy Kim Cage (1:04:17) Mine will have been my 17th ⁓ anniversary of my brain surgery ⁓ will be in January, sorry, in December. And then the seventh anniversary of the stroke is in January. So lot of years. Bill Gasiamis (1:04:33) Yeah, yeah. A lot of years, a lot of years, great that they’ve happened and I’m really happy with that. Keep doing these podcasts, makes me forget about myself. It’s about other people, so that’s cool. know, meet people like you, putting out awesome books. And when I was going through early on, there wasn’t a lot of content. It was hard to get content on stroke surviving, recovery, all the deficits, all the problems. That’s part of the reason why I started this. And now I think I’ve interviewed maybe 20 or 30 people who have written a book about stroke, which means that the access to information and stories is huge, right? So much of it. ⁓ Your book comes out in early December. Where is it going to be available for people to buy? Conclusion and Final Thoughts Judy Kim Cage (1:05:20) It is currently available to download ⁓ through the Kindle app and through Amazon. The hard copies will be available to order through Amazon and hopefully in other booksellers, but that’s TBD. Bill Gasiamis (1:05:39) Yeah, well, we’ll have all the current links by then. We’ll have all the current links available in the show notes. ⁓ At the beginning of this episode, I would have already talked about the book and in your bio when I’m describing the episode and who I’m about to chat to. So people would have already heard that once and hopefully they’ll be hearing it again at the end of the episode. So guys, if you didn’t pay attention at the beginning, but now you’re at the end, it’s about to come. I’m going to give all the details. Judy Kim Cage (1:06:07) stuck around. Bill Gasiamis (1:06:09) Yeah. If you stuck around, give us a thumbs up, right? Stuck around in the comments or something, you know? ⁓ Absolutely. Thank you so much for joining me, reaching out, sharing your story. It is lovely to hear and I wish you well in all of your endeavors, your continued recovery. yeah, fantastic. Great stuff. Thank you so much. Thank you. Well, that’s a wrap for another episode. want to thank Judy for sharing her story so openly. The way she spoke about denial, rehab, reality, cognitive fatigue and rebuilding identity is going to help a lot of people feel less alone. If you’re watching on YouTube, let us know in the comments, what part of Moyamoya Syndrome stroke recovery has been the hardest to explain to other people for you? Was it the physical symptoms or is it the invisible ones? like fatigue and cognition. And if you’re listening on Spotify or Apple podcasts, please leave a review. It really helps other stroke survivors find these conversations when they need them most. Judy’s book is called Super Survivor, How Denial Resistance and Persistence can lead to success and a better life after stroke. And you’ll find the links in the show notes. And if you want more support from me, you can Grab a copy of my book at recoveryafterstroke.com/book, and you can become a Patreon supporter at patreon.com/recoveryafterstroke. It genuinely helps keep this show alive. Thanks again for being here. Remember you’re not alone in this recovery journey and I’ll see you in the next episode. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However, third party links from our website are followed at your own risk and we are not responsible for any information you find there. The post Moyamoya Syndrome Stroke Recovery: How Judy Rebuilt Her Life After a “Puff of Smoke” Diagnosis appeared first on Recovery After Stroke.

In this expansive and deeply affirming conversation, Linda Bluestein and Shimi Kang explore a powerful idea: true healing comes from connection, not control—especially when living with chronic pain, nervous system dysregulation, or complex, overlapping conditions. They unpack the neuroscience of emotional regulation and why chronic pain so often disrupts attention, focus, and cognitive flexibility—issues frequently labeled as “brain fog” or misattributed solely to mood or motivation. The discussion also dives into the growing recognition of overlap between neurodivergence and Ehlers-Danlos Syndromes, exploring how sensory sensitivity, pain, autonomic stress, and dopamine dysregulation may be biologically intertwined. The conversation examines how constant tech stimulation and dopamine overload can further impair resilience, focus, and emotional regulation, particularly in already taxed nervous systems. They also explore emerging research on psychedelic-assisted therapies, including how substances like psilocybin may help unlock stored trauma, shift pain pathways, and support nervous system recalibration. From the culture of medicine to the lived experience of chronic illness, they name the often-unspoken role of shame in blocking connection, care, and recovery—inviting listeners to rethink how we relate to our bodies, our brains, and what it truly means to heal. Takeaways: How chronic pain and nervous system stress impair focus, attention, and executive function The emerging connection between neurodivergence (e.g.; ADHD, autism, dyscalculia, dysgraphia etc.) and Ehlers-Danlos syndromes Why dopamine overload—from phones, apps, and constant stimulation—can worsen pain and emotional regulation How psychedelic-assisted therapies may help release stored trauma and alter pain pathways Why unspoken shame in medicine and chronic illness interferes with healing and connection Why whole-person healing requires honoring the brain–body–nervous system connection Want more Dr. Shimi Kang? https://x.com/drshimikang https://www.instagram.com/drshimikang/?hl=en https://www.facebook.com/drshimikang/ https://www.youtube.com/channel/UCfqNKUKkxgM8M7Psn2f8fPA https://www.linkedin.com/in/drshimikang/?originalSubdomain=ca Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

In this expansive and deeply affirming conversation, Linda Bluestein and Shimi Kang explore a powerful idea: true healing comes from connection, not control—especially when living with chronic pain, nervous system dysregulation, or complex, overlapping conditions. They unpack the neuroscience of emotional regulation and why chronic pain so often disrupts attention, focus, and cognitive flexibility—issues frequently labeled as “brain fog” or misattributed solely to mood or motivation. The discussion also dives into the growing recognition of overlap between neurodivergence and Ehlers-Danlos Syndromes, exploring how sensory sensitivity, pain, autonomic stress, and dopamine dysregulation may be biologically intertwined. The conversation examines how constant tech stimulation and dopamine overload can further impair resilience, focus, and emotional regulation, particularly in already taxed nervous systems. They also explore emerging research on psychedelic-assisted therapies, including how substances like psilocybin may help unlock stored trauma, shift pain pathways, and support nervous system recalibration. From the culture of medicine to the lived experience of chronic illness, they name the often-unspoken role of shame in blocking connection, care, and recovery—inviting listeners to rethink how we relate to our bodies, our brains, and what it truly means to heal. Takeaways: How chronic pain and nervous system stress impair focus, attention, and executive function The emerging connection between neurodivergence (e.g.; ADHD, autism, dyscalculia, dysgraphia etc.) and Ehlers-Danlos syndromes Why dopamine overload—from phones, apps, and constant stimulation—can worsen pain and emotional regulation How psychedelic-assisted therapies may help release stored trauma and alter pain pathways Why unspoken shame in medicine and chronic illness interferes with healing and connection Why whole-person healing requires honoring the brain–body–nervous system connection Find the episode transcript here. Want more Dr. Shimi Kang? https://x.com/drshimikang https://www.instagram.com/drshimikang/?hl=en https://www.facebook.com/drshimikang/ https://www.youtube.com/channel/UCfqNKUKkxgM8M7Psn2f8fPA https://www.linkedin.com/in/drshimikang/?originalSubdomain=ca Want more Dr. Linda Bluestein, MD? Website: https://www.hypermobilitymd.com/ YouTube: https://www.youtube.com/@bendybodiespodcast Instagram: ⁠⁠⁠⁠https://www.instagram.com/hypermobilitymd/⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠https://www.facebook.com/BendyBodiesPodcast⁠⁠⁠⁠ X: ⁠⁠⁠⁠https://twitter.com/BluesteinLinda⁠⁠⁠⁠ LinkedIn: ⁠⁠⁠⁠https://www.linkedin.com/in/hypermobilitymd/⁠⁠⁠⁠ Newsletter: ⁠⁠⁠⁠https://hypermobilitymd.substack.com/ Shop my Amazon store ⁠⁠⁠ https://www.amazon.com/shop/hypermobilitymd Dr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at ⁠⁠https://www.bendybodiespodcast.com/⁠⁠. YOUR bendy body is our highest priority!⁠⁠ Learn more about Human Content at ⁠⁠⁠http://www.human-content.com⁠⁠⁠ Podcast Advertising/Business Inquiries: ⁠⁠⁠sales@human-content.com⁠⁠⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links Learn more about your ad choices. Visit megaphone.fm/adchoices

Sofi explica que es el Síndrome de Ehlers Danlos, Fa lee su nueva historia favorita de reddit y ambas comparten sus propósitos de 2026.

Today we are featuring two articles that relate to moving genetics into mainstream healthcare. In our first segment, we discuss polygenic risk scores and the transition from research to clinical use. Our second segment focuses on hypermobility Ehlers Danlos Syndrome and the triaging of clinical referrals.    Segment 1: Readiness and leadership for the implementation of polygenic risk scores: Genetic healthcare providers' perspectives in the hereditary cancer context   Dr Rebecca Purvis is a post-doctoral researcher, genetic counsellor, and university lecturer and coordinator at The Peter MacCallum Cancer Centre and The University of Melbourne, Melbourne, Australia. Dr Purvis focuses on health services delivery, using implementation science to design and evaluate interventions in clinical genomics, risk assessment, and cancer prevention.   In this segment we discuss: - Why leadership and organizational readiness are critical to successful clinical implementation of polygenic risk scores (PRS). - How genetic counselors' communication skills position them as key leaders as PRS moves from research into practice. - Readiness factors healthcare systems should assess, including culture, resources, and implementation infrastructure. - Equity, standardization, and implementation science as essential tools for responsible and sustainable PRS adoption. Segment 2: A qualitative investigation of Ehlers-Danlos syndrome genetics triage   Kaycee Carbone is  a genetic counselor at Boston Children's Hospital in the Division of Genetics and Genomics as well as the Vascular Anomalies Center. Her clinical interests include connective tissue disorders, overgrowth conditions, and somatic and germline vascular anomaly conditions. She completed my M.S. in Genetic Counseling at the MGH Institute of Health Professions in 2023. The work she discusses here, "A qualitative investigation of Ehlers-Danlos syndrome genetics triage," was completed as part of a requirement for this graduate program.    In this segment we discuss: - Why genetics clinics vary widely in how they triage referrals for hypermobile Ehlers-Danlos syndrome (hEDS). - How rising awareness of hEDS has increased referral volume without clear guidelines for diagnosis and care. - The ethical and emotional challenges genetic counselors face when declining hEDS referrals. - The need for national guidelines and clearer care pathways to improve access and coordination for EDS patients. Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.

In this layered, vulnerable, and intellectually powerful episode of the Kink Series, we go far beyond basic BDSM concepts and drop directly into the psychology, ritual, and emotional architecture of kink with Mistress Audry Lu Black — a professional dominatrix, lifestyle FemDomme, educator, and respected kink community leader. Together we explore how bondage, ritual, humiliation, sexual sadism, and power exchange can serve not only erotic expression but also nervous system regulation, trauma processing, and emotional liberation. What begins as a conversation about rope quickly expands into a rich discussion about worship, devotion, fear release, identity, surrender, and the transformative role of a Dominant who leads with intention and precision. This episode opens the door to understanding kink as both art and psychology, and how deep D/s can create safety, stillness, and meaning for those who crave structure, containment, or catharsis. • Why 20% of the body's energy feeds the brain and how cognitive load, overthinking, and perfectionism show up in bondage scenes • Bondage as nervous system regulation — creating stillness, presence, and relief for anxious or neurodivergent minds who struggle with meditation • Somatic containment through rope and restraint for anxiety, trauma, and hypermobility conditions (including Ehlers-Danlos and other connective tissue differences) • The paradox of safety through restriction — how removing choice, movement, and anticipated pressure can reduce anxiety and soothe a dysregulated nervous system • Femme Domme philosophy and energetic leadership — what it means to embody dominance, hold power, and create psychological structures for surrender • Sexual sadism and humiliation — how intention, emotional tone, and negotiated meaning differentiate harm from healing, and cruelty from catharsis • The psychology of worship and groveling — why submission, devotion, and being at Her feet can be grounding, erotic, or spiritually significant • Ritual in kink — how structure, ceremony, and symbolic actions frame scenes, build trust, and regulate the body's response to intensity • Lifestyle vs. professional domination — the differences in purpose, boundaries, emotional bandwidth, and the Dominant's role in each dynamic • Deep-dive negotiation practices — understanding limits, desires, tone, chemistry, and psychological triggers before entering a scene • A full, realistic BDSM pre-scene negotiation role play so listeners can hear how safe, ethical, consent-based kink is structured before any play begins • The Dominant's internal process — emotional labor, reading the submissive's physiology, and creating a safe container for intensity • How humiliation can be affirming, transformative, or erotic depending on the submissive's psychology and agreed roles • Bondage as an anchor for embodiment — helping the mind exit constant vigilance and enter stillness, surrender, or erotic presence  Touch Me There: Vaginal Reflexology, Squirting Secrets & Orgasmic Magic — available here: https://open.spotify.com/episode/0AsOZmGPvMiR3pQfVZKfxR?si=fFDg8SQqS7OCQQn5ptYGoA Connect with the Guest Mistress Audry Lu Black Podcast: Placemaker for Perversion Substack: https://audrylublack.substack.com/ Official Website: https://mistresslublack.com/ Mentioned Resources Hani Cheng – Talk to the Peach: Sensual healing, feminine pleasure, and reconnecting with your body (Listen here) Hani Cheng – Reflexology: Mapping female genitals with reflexology for pleasure and body awareness (Listen here) Shameless Care — Use code PLEASME for $15 off at-home sexual health testing: shamelesscare.com Eve's Substack — Q&A, workshops, & exclusive content: https://pleasemewitheve.substack.com/ Please Me Podcast Patreon — Extended episodes & bonus content: patreon.com/PleaseMePodcast SDC.com — Use code 37340 for a free trial membership World Vision Support survivors of typhoon & earthquake: worldvision.org Learn more about your ad choices. Visit megaphone.fm/adchoices

Today we’re going to talk with Paul Korotish, who was just diagnosed with VEDS last year after an iliac artery rupture.  Information mentioned in the episode: 2017 International Classification of Ehlers-Danlos syndromes: https://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31552

How to Heal Chronic Illness By Reclaiming Wholeness So many of us believe a chronic diagnosis means a life sentence—but what if you could change the story? In this episode, Dr. Karyn Shanks shares her journey from frustration with conventional medicine to creating a practice focused on healing the whole person. From her personal experience with Ehlers-Danlos syndrome to groundbreaking insights about functional medicine, Dr. Shanks offers hope that chronic conditions aren't just labels—they're starting points for transformation. We dive into the science and spirit of healing: why trauma and lifestyle influence your health, how epigenetics and neuroplasticity unlock new possibilities, and practical steps you can take today. You'll hear about Dr. Shanks' new book "Unbroken: Reclaim Your Wholeness," which delivers a powerful roadmap for building resilience and reclaiming your health. Ready for actionable tools, fresh perspectives, and inspiration? This episode guides you on the stepping stones to thriving—no matter your diagnosis Guest Links/Resources: Dr. Karyn Shanks: https://karenshanksmd.com Instagram & Facebook: @karenshanksmd Book: Unbroken: Reclaim Your Wholeness (Release: 11/11/25, audio/ebook/print)

What does it take to turn years of pain into a platform for power? We sit with nutritionist, trainer, and competitive bodybuilder Maria Beretta to unpack a journey that starts with teenage loss and spirals into chronic symptoms before snapping into clarity: if the system won't solve it, she will. Maria breaks down the real face of PCOS—cystic ovaries, acne, mood swings, insulin resistance—and the often-missed reality of hypermobile Ehlers-Danlos syndrome, where fragile connective tissue makes every step and lift a risk. Instead of accepting a handful of prescriptions, she chose a different map: keto to stabilize PCOS, a hard stop on dairy to cut inflammation, and targeted peptide therapy (BPC-157 and TB-500) to protect her training and speed recovery.The turning point isn't just biochemical. It's mindset. Maria explains how visualization, faith, and ruthless specificity shaped her prep for NPC figure—meal planning without drama, cardio without shortcuts, and posing that balances muscle with grace. She's candid about the sport's truths: the expense, the prevalence of PEDs at elite levels, and the monotony few see behind a 20-second stage moment. Then comes the plot twist: a New Year's Day car crash, a 40% T12 compression fracture, eight disc herniations, and traumatic scoliosis. With imaging to guide her and peptides to support healing, she made a careful, documented return to training and kept the pro card goal in sight.If you're navigating PCOS management, EDS training modifications, anti-inflammatory nutrition, or peptide therapy for injury recovery, this conversation delivers practical detail and lived results. Maria's approach—test, adjust, measure—turns “motivation” into method. We also get real about the mental side: how to set goals that grip you, rehearse the win, and keep going when doctors or doubt say stop. Tap play for a blueprint you can use, whether you're chasing a pro stage, a pain-free day, or your next personal best.If this episode moved you, follow the show, share it with a friend who needs it, and leave a review to help more listeners find conversations like this.

Most people think about heart disease and metabolism when they talk about longevity, but too few talk about joint health. In this episode, you'll discover how to biohack your joints to prevent pain, reverse damage, and move like you're decades younger. Host Dave Asprey reveals how functional movement, core stability, and recovery can transform joint health, helping you maintain pain-free performance for life. Watch this episode on YouTube for the full video experience: https://www.youtube.com/@DaveAspreyBPR Dr. Jason Snibbe is a globally recognized, board-certified orthopedic surgeon and a pioneer in advanced, minimally invasive, and robotic surgeries of the shoulder, elbow, hip, and knee. Fellowship-trained in Sports Medicine and Robotic Joint Reconstruction, he has achieved the lowest complication rate at Cedars-Sinai Medical Center and is the official orthopedic surgeon for the Los Angeles Clippers. He also serves as an orthopedic consultant for the Los Angeles Lakers, Los Angeles Sparks, Los Angeles Angels of Anaheim, and Los Angeles Kings. As a founding and managing partner in DOCS Spine and Orthopedics and Docs Surgical Hospital, Dr. Snibbe lectures and trains surgeons around the world in his specialized techniques. Host Dave Asprey and Dr. Snibbe uncover how weak glutes, poor core engagement, and bad footwear accelerate joint aging, and how functional movement training and fascia care can protect your body from surgery. You'll learn why proper biomechanics are central to human performance and longevity, how hypermobility and fascia impact neuroplasticity, and the latest biohacking tools for recovery and joint regeneration. You'll Learn: • The real cause of joint damage and how to prevent it • How to build a stronger core and glutes for long-term joint stability • Why footwear choices can make or break your movement quality • The truth about fascia, stretching, and strength training • When to use PRP, stem cells, and biologics for healing • How hypermobility affects your joints, brain, and longevity • Daily mobility and recovery habits that prevent future surgery They explore how biologics like PRP, stem cells, and exosomes are changing orthopedic recovery and joint repair, and why functional medicine is moving beyond surgery toward regeneration. You'll hear how precision movement, fascia work, and strength training protect your joints and enhance human performance and longevity. This is essential listening for anyone serious about biohacking, hacking human performance, improving mobility, and extending longevity. You'll also learn how neuroplasticity, metabolism, and brain optimization all connect to the way you move. Dave Asprey is a four-time New York Times bestselling author, founder of Bulletproof Coffee, and the father of biohacking. With over 1,000 interviews and 1 million monthly listeners, The Human Upgrade brings you the knowledge to take control of your biology, extend your longevity, and optimize every system in your body and mind. Each episode delivers cutting-edge insights in health, performance, neuroscience, supplements, nutrition, biohacking, emotional intelligence, and conscious living. New episodes are released every Tuesday, Thursday, Friday, and Sunday (BONUS). Dave asks the questions no one else will and gives you real tools to become stronger, smarter, and more resilient. Keywords: Joint biohacking, Orthopedic regeneration, Functional movement patterns, Core stability training, Glute activation exercises, Fascia mobility, Hypermobility syndrome, Ehlers-Danlos collagen disorder, Foot biomechanics, Pronation and supination, Arch support orthotics, Barefoot gait training, Stem cell joint repair, PRP knee therapy, Exosome orthopedic recovery, Meniscus tear alternatives, Robotic joint surgery, Posture correction, Gait analysis technology, Pain-free longevity Thank you to our sponsors! TRU KAVA | Go to https://trukava.com/ and use code DAVE10 for 10% off. BON CHARGE | Go to https://boncharge.com and use code DAVE for 15% off. OneSkin | For a limited time, try OneSkin for 15% off with code DAVE at https://www.oneskin.co/DAVE Business of Biohacking Summit | Register to attend October 20-23 in Austin, TX https://businessofbiohacking.com/ Resources: • Learn more about Dr. Snibbe's work: https://www.drjasonsnibbe.com/ • Danger Coffee: https://dangercoffee.com/discount/dave15 • Dave Asprey's BEYOND Conference: https://beyondconference.com • Dave Asprey's New Book – Heavily Meditated: https://daveasprey.com/heavily-meditated • Upgrade Collective: https://www.ourupgradecollective.com • Upgrade Labs: https://upgradelabs.com • 40 Years of Zen: https://40yearsofzen.com Timestamps: • 0:00 — Trailer • 1:28 — Introduction • 2:38 — The Kinetic Chain • 9:34 — Core and Glutes • 12:18 — Stretching and Fascia • 17:32 — Sleep and Recovery • 18:49 — Vibration Therapy • 23:47 — Gait and Compensation • 30:47 — Robotic Surgery • 34:28 — Future of Medicine • 39:23 — Footwear Mistakes • 48:48 — Wearables and Tech • 55:13 — Stem Cells and Biologics • 1:01:20 — Final Takeaways See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this special bonus episode, Dr. Linda Blustein (Bendy Bodies https://bit.ly/m/BendyBodies) addresses listener questions about Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders. 00:00 – Introduction 00:59 – Can PCPs diagnose hEDS without a geneticist? 03:19 – Limitations of the Beighton Score 05:40 – 2017 hEDS criteria & upcoming revisions 10:29 – How to find a knowledgeable provider 12:52 – SVT vs POTS in a patient with EDS family history 19:53 – How to ask your provider if they're comfortable treating dysautonomia 22:17 – MTHFR variants and hEDS 29:23 – Celiac, gluten sensitivity & EDS 31:48 – Food allergy vs sensitivity testing 34:11 – Lipoedema and hypermobility 39:00 – LDN, Ketotifen, and Cromolyn 43:41 – Medication sensitivity in EDS/POTS/MCAS patients 45:47 – Wrap up and resources ​FIGS Get 15% off your first order at wear figs.com with the code FIGSRX Locumstory ​Locumstory.com is simply a free, unbiased educational resource about locum tenens Grammarly Download Grammarly for free at Grammarly.com/PODCAST