74. Podcast Secrets and Sneak Peeks with Guest Host Kate Colbert

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Linda Bluestein, MD (00:02.306)

So today we're going to do something a little different. Bendy Bodies listeners are used to me showcasing the insights of medical practitioners and scientists talking about various aspects of hypermobility. Nearly every episode features one or two guest experts. But today, in honor of the Bendy Bodies podcast celebrating its fourth season, I am going to sit in the hot seat as the guest answering questions from my guest co-host, Kate Colbert. So let's do this.

 

Kate Colbert (01:14.154)

Hey.

 

Linda Bluestein, MD (01:15.702)

Hey, so good to see you. And I wanna make sure everyone knows who you are. Kate Colbert is a world renowned marketer and award winning healthcare and higher education writer. She owns a strategic communications consultancy and a publishing company. And she coaches executives on how to communicate with their stakeholders more effectively, how to sharpen their business operations and how to achieve sustainable, profitable business growth. Kate is best known.

 

Linda Bluestein, MD (01:43.586)

for her bestselling books, Think Like a Marketer, How a Shift in Mindset Can Change Everything for Your Business, and most recently Commencement, the Beginning of a New Era in Higher Education. Her work has been featured in Forbes, the Harvard Business Review, the Chronicle of Higher Education, Business Insider, National Public Radio, CBS, NBC, Spectrum News, CEO World Magazine, and other media outlets. Kate became a fierce advocatefor people with chronic illness and disability after being diagnosed finally with hypermobile EDS when she was 45. With her background in medical writing and a high level of healthcare literacy, she has added to her already full plate a new mission to help others with symptomatic joint hypermobility receive clear diagnoses and the excellent care they seek and deserve. Kate is a certified patient advocate through the Ehlers-Danlos Society. She is so many things to so many people.

 

But to me, she is a patient, a colleague, and a friend, and I'm so excited to get to chat with her today on the show. Welcome to Bendy Body's podcast, Kate, and I can't wait to chat with you.

 

Kate Colbert (02:52.974)

Oh, thanks so much for having me. This is gonna be fun.

 

Linda Bluestein, MD (02:55.923)

Yes, I'm super, super excited.

 

Kate Colbert (02:58.13)

All right, are you gonna let me take the reins? Are you ready to sit in your own hot seat? Sit back, relax, be a guest, be my guest. Okay, so, you know, folks who I think have been listening to the podcast for a while now probably know a fair amount about your background, but you do such a nice job of really giving and shining a light on your guests that sometimes I think people might forget about your background. So I wanted to kind of start at the beginning. Tell us a little bit about your...

 

Linda Bluestein, MD (03:01.274)

Okay, I'm gonna sit back. I'm ready. Yeah.

 

Kate Colbert (03:28.562)

career trajectory, how you went from aspiring dancer to anesthesiologist to EDS expert, pain specialist, dance medicine specialist, and now this leading authority who's one of the most important voices in the joint hypermobility space for those of us who follow you and for those of us who have diagnoses like EDS or HSD. So how did you get from sort of here to there?

 

Linda Bluestein, MD (03:51.803)

Sure. So, growing up, I had health problems in infancy, and I won't bore everyone with all the nitty gritty for sure. So people are like, Oh dear God, here we go. But I'm going to go.

 

Linda Bluestein, MD (04:03.942)

I really, really wanted to be a professional dancer. That was my number one dream and goal. I loved ballet. Just had such a passion for it. And when I started getting a lot of injuries and more and more problems, more and more health problems, I realized I needed a plan B, which was to go into medicine, which I loved. And I have such a passion for science as well. And I loved being an anesthesiologist in the operating room, but then my health started to catch up to me again. So I started having more and more problems.

 

The biggest two were I had a Tarlov cyst and needed surgery for that. And then I had a cyst that grew inside a bone in my wrist and I had surgery for that. And I got something called CRPS or complex regional pain syndrome after that surgery. And that led to a, now we need to go with plan C. So at that point, I really was.

 

Kate Colbert (04:52.81)

Hahaha.

 

Linda Bluestein, MD (04:57.314)

kind of at a loss. It was really hard because having to give up my dance career was...

 

It was terribly painful. I had to grieve a lot over that. And then losing the ability to perform as an anesthesiologist in the operating room, that was really, really hard because you train so many years for that. So that was a real struggle. But then when I realized that I had this passion for science, I had the passion for dance, and I thought, well, maybe I can combine those two. And as I was learning more about my own joint hypermobility and symptomatic joint hypermobility

 

better because my doctors didn't really have much to suggest. I know a lot of people can relate to that. So I just started diving deep in the literature learning everything I could from

Linda Bluestein, MD (05:45.706)

various different experts. And so that's when I kind of made a transition to starting to write about symptomatic joint hypermobility, starting to care for people with symptomatic joint hypermobility. And it's been a wonderful way to combine my passion for science and my passion for aesthetic artists, as well as people, everyday people who are suffering with pain and other symptoms.

 

Kate Colbert (06:13.842)

Wow, it's so interesting to me how you've been able to sort of build upon each area of experience and expertise in order to serve different populations of stakeholders. And I appreciate the fact that you talked about grieving, that, you know, I think a lot of people with some sort of chronic illness or disability do lose parts of their identity along the way or have to change parts of their identity along the way, especially if they were athletes, as you were, or if...if they had really sort of physical life or they did a certain type of job that became difficult because of their diagnosis, their disability. And I love, I think this is such an important reminder to your listeners that we can reinvent ourselves. And sometimes plan B or plan C or plan D ends up being a really beautiful plan, even though it's not where we thought we were headed. And it can be what's really perfect.

 

Linda Bluestein, MD (07:00.238)

Mm-hmm.

 

Kate Colbert (07:12.598)

for our minds and our bodies. And, you know, I always joke, so I own a couple of companies and I never thought of myself early in my career as a business person. I didn't, my first three degrees were all in English. I was gonna be a writer forever and ever, amen. And then I was an English professor and I made all these shifts and I left academia. And then I made my way back to academia as a higher ed prognosticator and author.

 

And I look at it and I look at your career and I look at my career and I think I had moments where I was being told what time I had to be in the chair every day, what I had to do when I had to do it. And sometimes when you have a body, as is the case of most of your listeners, that can be a little unpredictable and a little hard to control. Having more control over your career is really helpful. And so sometimes some of these.

 

Linda Bluestein, MD (08:00.878)

Mm-hmm.

 

Kate Colbert (08:08.762)

losses, at least in my experience, some of these losses that we have to grieve end up having all kinds of silver linings in terms of what it gives back to us in terms of our ability to have impact and our ability to have kind of work-life health harmony with our bodies, which I really love about that. So I want to talk a little bit more about how you got into podcasting, but first I actually want to talk a little bit about your medical specialty. So...

 

Linda Bluestein, MD (08:24.243)

Mm-hmm.

 

Kate Colbert (08:37.906)

Obviously, most doctors specialize in a certain body system or a certain type of treatment or care. Right. So dermatologists focus on the skin or GI doctors focus on the digestive tract or orthopedic surgeons focus on the bones and joints. And boy, don't we wish they knew a lot more about connective tissue. I've always thought that was interesting that like, you know, your ortho doc will sort of figure out your tendons and ligaments because they have to, but not because they're always that interested in it.

 

Linda Bluestein, MD (09:06.414)

Ha ha!

 

Kate Colbert (09:07.026)

But like, if they're, you know, like, why isn't there somebody who specializes in, you know, fascia and ligaments and tendons, all those things. But you've done something really interesting in your career. So instead of specializing in a system of the body or a body part, like a podiatrist or whatnot, you specialize in a certain kind of patient. You specialize in helping people with symptomatic joint hypermobility with people who have diagnoses like Ehlers-Danlos syndrome or hypermobility spectrum.

 

Linda Bluestein, MD (09:28.519)

Mm-hmm.

 

Kate Colbert (09:36.734)

disorder, MR fans. I have to say, I first discovered you sort of on a Google search a few years back. And Color Me Happy when I found out there was such a thing as a doctor who specialized in hypermobility, I thought, oh my gosh, this is the holy grail doctor. At the time you were actually living and practicing in Wisconsin where I'm located, and I was like, I don't care how like where Wisconsin this is, like I've got to meet her. And so, so I think that's really interesting.

 

Linda Bluestein, MD (09:45.646)

Ha ha ha!

 

Kate Colbert (10:05.366)

Could you talk about that for a minute though, this idea of specializing in a certain kind of patient about why do you think it's so important that hypermobile patients have providers who have expertise or experience, or at least a deep interest in connective tissue disorders in order to be able to care for us?

 

Linda Bluestein, MD (10:24.214)

Yes, this is definitely something that I think is perplexing because there's no one home for people that have these conditions. So because of the fact that EDS and related conditions affect virtually every bodily system, it really...

 

lies at the intersection of everything. And I tell people all the time, it doesn't matter what kind of medicine you practice, you need to be familiar with these conditions. And in medical school, I think a lot of people don't realize how structured the curriculum is. It's very intentional. And it might sound like four years is a long time, four years of medical school after college, but really you have to develop such a strong scientific foundation. So you're learning things like biology and chemistry and pharmacology and et cetera. And then you start learning

 

systems like the musculoskeletal system or gastrointestinal etc. And then you start learning about different diseases, how to diagnose them, how to do a physical exam, what different tests are. There's a lot that you have to learn and that's your foundation for entering residency where you learn the much more specifics like for me it was another four years in order to become an anesthesiologist. For my husband who's a urologist his residency was another six years. So if you think if you think about it that's eight to ten

 

Yeah, eight to 10 years post high school. So it seems like post college, I'm sorry, post college. I'm like, that didn't seem quite right. Yeah, that's eight to 10 years post college, but you need to make sure that everybody has that foundational knowledge base. And so we don't wanna start with conditions and work backwards. We have to start with basic science and build on that. And so...

 

Kate Colbert (11:47.975)

Yeah.

 

Kate Colbert (12:03.071)

Thanks.

 

Linda Bluestein, MD (12:06.378)

I think that it's really, I wish, I would like to see schools talk more about how things can affect multiple systems and rather than a lot of super specific education about EDS, which I think of course would be helpful, EDS and related conditions I should say, because we know that there's a lot of things that can basically fall under the umbrella of symptomatic joint hypermobility. And so I think it would be important for people to realize that.

 

when they are treating patients that they shouldn't be surprised if something is affecting multiple different systems. And if that's the case, we don't blame the patient. And if the patient's not getting better, we don't blame the patient. We don't know everything. We don't know close to everything. So.

 

And we're limited in how deep of a dive we can do in most cases because of insurance. For example, insurance doesn't authorize a lot of medications, they don't authorize a lot of tests. You know, if money is no object, you could go to one of these centers where you could do a full body MRI, you could rule out aneurysms in your brain, you could do a deep, deep dive. But of course, that costs a lot of money. So in our standard medical system,

 

we are much more divided into neurology, gastroenterology, et cetera, and we have short visits for the most part. Most people who have these conditions of symptomatic joint hypermobility, it's not appropriate to have these short visits because they have way too many symptoms to really cover in that span of time. And oftentimes when people hear things that don't really make sense to them, they're like,

 

unfortunately they start to, I don't want to say lose interest, but they start to feel like, oh, I don't know if I'm really going to be able to help this person.

 

Linda Bluestein, MD (13:51.69)

And I pretty much guarantee you, everyone who went into medicine, went into medicine to help people. I interact with medical students still on a pretty frequent basis. And they are so enthusiastic, and they're so wonderful. I love getting to interact with them because they're just so idealistic. And along the way, though, you get squeezed.

 

And so I think part of why people with complex chronic illnesses are so poorly served, and this is absolutely not limited to symptomatic joint hypermobility, but any chronic complex illness is a very poor fit for our current healthcare system.

 

Kate Colbert (14:33.574)

Wow. Gosh, you make some really huge points here. I appreciate, and I think the patients who are listening to this episode are really going to appreciate the fact that you remind us how medical education works and why it needs to work the way it does. And of course, it can work better than it does. I can say, I have to say that when I think of people coming, you know, fresh out of medical school with their MD degree, as far as I'm concerned, their babies, I used to be the director of marketing at a medical school.

 

Linda Bluestein, MD (15:01.088)

Oh yeah.

 

Kate Colbert (15:03.854)

And, you know, the students were sitting in the library outside my office all day long studying and eating Cheetos and whatnot, and I'm not getting enough sleep. And, you know, this is back in the day when, you know, they were, you know, getting ready to go after residency, right, and they were learning the important things like am I allowed to swear on your podcast? Yeah. So, you know, like, you know, eat when you can, sleep when you can, and don't fuck with the pancreas, right? So, but.

 

Linda Bluestein, MD (15:21.606)

Oh, God, yes, it's encouraged.

 

Linda Bluestein, MD (15:27.506)

Right? Right. Yep.

 

Kate Colbert (15:30.374)

You know, but yes, they're very young and really have sort of more of a basic science and understanding of anatomy and whatnot, sort of going into those residencies. And certainly there's deep learning there. But yes, you have to. And common things happen commonly. Right. So I think, you know, we think about, you know, EDS patients sort of likening themselves to sort of the zebra metaphor. You know, common things happen commonly. And that's why doctors are trained while they are. So if a particular symptom

 

If 90% of the time that points to a particular diagnosis, then that's what should be coming to mind for a doctor when they see it. But then how do you be thinking about, is there something else? I had, I was very fortunate. So I wasn't diagnosed until I was 45 with hypermobile EDS. And I worked at a medical university, so I was surrounded by doctors and physical therapists and PAs and whatnot all day long.

 

And one of our NPs had said to me back then, this was probably 20 years before I was diagnosed, she had said to me once, she says, Kate, you don't have, I know you have like 25 different symptoms, but you don't have 25 different diseases. She's like, I don't know what it is. And she's like, but someday someone's gonna figure it out and it's gonna be one thing. It's gonna be one diagnosis or two potentially related diagnoses that explain everything. And she's like, and I...

 

Linda Bluestein, MD (16:48.224)

Mm. Mm-hmm.

 

Kate Colbert (16:54.274)

And she said, I'm frustrated that I can't figure it out, but I promise you, one, you're not crazy, and two, you don't really have 25 different diseases. And I thought that was really interesting. And when I was diagnosed, I called her and I said, Nurse Norris, you were right. Which is, I love, and I think it was a nurse who actually came up with the phrase, if you can't connect the issues, think connective tissues.

 

which I think is really a great guideline for folks who are interacting with patients who might have some complexity and might have Symptomatic joint hypermobility. So I think this is really great. I'm talking about How this all works. I also have experienced a lot of doctors who unlike you don't specialize in EDS And who maybe have never even seen it And so I asked new providers all the time and I do it in a super friendly way I always say like, you know, so

 

Linda Bluestein, MD (17:44.492)

Yeah.

 

Kate Colbert (17:46.302)

So I don't know if you see a lot of patients with EDS and sometimes they just don't answer or sometimes they say, oh, we have a few or no, you're my first. And then I take it on as my job as the patient to try to really politely and collaboratively educate them as we work on becoming part of Team Kate to figure out how to help me with whatever I'm going through. And I think that one of the things I love most about the Bendy Bodies podcast is that

 

you know, not everyone has access to a big team Kate, right? So I happen to live in an area where there's a lot of academic medical centers. I live halfway between Milwaukee and Chicago. So we have all these medical schools and academic medical centers. I've got great insurance. I've got good healthcare literacy because I am a healthcare writer. And so I am able to avail myself of all of these amazing people and then introduce them to each other and say, how do we all treat me?

 

for my best outcomes, but not everyone's gonna have that kind of access. And I love that your podcast in many ways actually creates team listener, right? So your podcast listeners, sometimes they wanna learn about a particular thing that's happening in their body and you'll have a guest who just happens to be talking about that and they learn something and they can do some more reading on it and they can bring that information back to their primary care or whoever's kind of quarterbacking their health these days.

 

And then they hear another one of your guests talk about something else. And suddenly they put another piece together. Right. And so I've always thought of the Bendy Bodies podcast as sort of an on-demand sort of access to these teams without a bill, which I love, right. With, you know, you're not billing my insurance for me to listen, which I appreciate. And I love the fact that it's actually very, it reminds me very much of the EDS sort of global patient conference that happens every year.

 

Linda Bluestein, MD (19:26.684)

Mm-hmm.

 

I'm sorry.

 

Kate Colbert (19:38.878)

which by the way, loved your session. And if I can just shout out for anybody who ends up watching the video of this on YouTube, they had sweatshirts and on the back of them, like you're like a rock star, like it's a concert, they put the speakers names and there you are, Dr. Linda Blustein on the back of the sweatshirt from the conference, which is really cool. So you were already a rock star to me, but now I've got the sweatshirt to prove it. So.

 

Linda Bluestein, MD (19:56.276)

I love that.

 

I love that.

 

Linda Bluestein, MD (20:05.555)

Ahaha!

 

Kate Colbert (20:06.478)

So I just really love what you're doing here on the podcast to really kind of assemble these great minds all in one place to have a conversation that then allows patients to do their own consideration, have their own conversations amongst their family with their medical team, and then arrive at better sort of aha moments, decisions, treatment plans, etc. So I just really love it. So let's talk about the podcast some more.

 

So this amazing, I'm gonna brag for a little bit because you're one of the most humble people I know and I know you're not gonna brag, so I'm gonna brag for you. So this amazing platform that you have developed, the Bendy Bodies podcast with the Hypermobility MD, you have been providing medical insights and science-based information about hypermobility. This is, as we're recording this episode, going into your fourth season, which is exciting. So first off, congratulations on that.

 

And then, you know, I want to talk about sort of how it all started. So the Bendy Bodies podcast was founded just weeks before the world shut down with the onset of the coronavirus pandemic. You started in February 2020 and lo and behold, suddenly lots of medical providers who could and scientists who had interesting things to share on your show were available and willing to jump on a recording for a podcast because everyone was suddenly working from home or working differently.

 

And so here we are recording this conversation, you know, not quite three and a half years later. And if I can brag, the Bendy Bodies podcast is now the most popular hypermobility podcast in the world with more than 215,000 plays and counting. So tell me a little bit about what it was like in the beginning, because I know, you know, listen, you're a doctor, right? You didn't, you didn't...

 

show up when you talked about plan A, plan B, plan C, not even plan C probably had, and I'm going to become a podcaster in there. So what was that like in the beginning? What were you trying to accomplish when you decided to start the podcast? What kinds of topics did you initially cover? What kind of focus and guests did you have? And maybe how has that changed over time? But tell me about what was it like in the beginning?

 

Linda Bluestein, MD (22:21.278)

And I'm so glad that you mentioned about the pandemic because it was planned for a little bit before that, but then starting to release the first few episodes, I was like, oh my gosh, now what's happening and nobody's in their car anymore. Is anybody going to listen? So I almost scrapped the whole idea because I thought, wow, this suddenly felt a lot less important because now we have this, yeah.

 

Kate Colbert (22:33.802)

I'm sorry.

 

Yeah. Oh, good question.

 

Kate Colbert (22:46.678)

Oh, what a heartbreak that would have been. So I don't commute because my office is in my house. And I assure you, I listen to your podcast in the morning while I'm doing my makeup. So I have it on the on the sink. And then if I do need to go run errands or whatever, I pop it in my car and I turn back on it, listen when I am in the car. So and sometimes in a bubble bath, I find it very relaxing. I listen to you in the bathtub all the time. So don't worry about the commute.

 

Linda Bluestein, MD (22:55.852)

Mm-hmm.

 

Linda Bluestein, MD (23:07.17)

Hahaha!

 

Linda Bluestein, MD (23:12.978)

Yeah, yeah, it is funny though, because I did think about that. I thought, well, is this still going to be relevant? You know, I mean, I think we a lot of us forget how terrifying that was. Like, like it was people, you know, being on the health care side of things and my husband being president of a surgery center, and suddenly everything's canceled.

 

Kate Colbert (23:15.646)

Yeah, of course. Wow. Yeah.

 

Kate Colbert (23:33.682)

Oh.

 

Linda Bluestein, MD (23:36.19)

And it's like, they're talking about bringing in trucks for the, for the bodies. I mean, I hate to say that, but that's truly, so it's like, wow, all of a sudden this podcast feels a little, so I'm glad I persisted because I had already opened my practice and I was seeing patients, but I also felt like there had to be a way to help people who could not afford to come see me. And I really wanted there to be an accessible way to reach people all across the globe.

 

Kate Colbert (23:46.555)

Me too.

 

Linda Bluestein, MD (24:03.666)

and provide credible scientific information for them so that they could improve their quality of life and functional capacity. And the thing that really made me the most crazy was I had discovered myself through things that I had tried on my own body and through.

 

working with patients that there's a lot of low-hanging fruit. There's a lot of things that you can do on your own. And you and I have talked a lot about things like movement and how I had terrible kinesiophobia, I will tell you. I was so afraid to move because when I moved, it hurt. And so even overcoming some of that and understanding

 

why that is and how we can use that information in order to start to get a better quality of life. I think it's just, I just felt like there was this huge need and

 

and podcasting was potentially a way to really help a lot of people. And before I founded the Bendy Bodies podcast in 2020, I did dabble a little bit in podcasting, co-hosting a show called the Hypermobility Happy Hour, which I'm sure some people have also listened to. And then I started Bendy Bodies podcast as my second podcast. And I was planning to do a series of super niche dance specific episodes and was, had the great fortune of working with guest co-host Jennifer Milner.

 

Kate Colbert (25:23.347)

Yeah.

 

Linda Bluestein, MD (25:24.454)

for those episodes and then she ended up doing a lot more episodes with me, which was amazing. And then over those first three seasons, we aired a really wide mix of episodes, some that were very dance specific, others that were geared towards anyone interested in joint hypermobility and related conditions. So it was...

 

came out of a desire to help more people than could travel to come see me. And I had always been a podcast person. I always loved, like you said, getting ready in the morning, folding the laundry, whatever. I'd always enjoyed myself learning through podcasts. And so I thought this was a great way to teach people.

 

Kate Colbert (26:00.378)

I love it. Well, you were teaching a lot of us and it's interesting to me because, you know, I know you had originally done all that focus on dance and sort of mixed sort of your overlap and hypermobility expertise and your expertise in dance. And frankly, I think, you know, a long time ago, if you think about it, a long time ago, when people thought of people with bendy bodies, they thought of extremely bendy bodies. They thought of people who were

 

Linda Bluestein, MD (26:27.713)

Mm-hmm.

 

Kate Colbert (26:29.93)

dancers, gymnasts, circus performers, right? And so all of those professionals still exist. And I do think a lot of people with hypermobile bodies find their way and stay in some of those professions because they can. But now we're finding out. I mean, my gosh, my diagnosis was just five years ago. And I remember when I was first diagnosed and I started telling friends and family and colleagues about EDS and most of them had never heard of it.

 

And now you literally can walk into your grocery store. And if it comes up while you're talking to your cashier, they'll be like, oh, my niece has EDS or, oh, you know, and there's just because diagnosis was just so paltry and it was just so under diagnosed and there's so much more information out there and you've been a huge part of getting that information out there. So I think that's really, really changed for a lot of us. And I have to say for anybody who is not a dancer or

 

Linda Bluestein, MD (27:04.031)

Yeah.

 

Kate Colbert (27:26.57)

doesn't do a lot of movement right now. Or maybe they don't move much at all right now. They're recently injured, they're recovering from a surgery, they're pretty limited, they're living a pretty sedentary life as I was before I met you. I would actually encourage them to still listen to the episodes about dance because at first I skipped over them and I've gone back and started listening to them.

 

Linda Bluestein, MD (27:47.319)

Ha ha ha!

 

Kate Colbert (27:49.474)

And one, it's fascinating to learn about dancers' lives and what it's like to be a dancer and how hard it is to be a dancer. And I found that sort of fascinating. But there are always really, really useful pieces of information in those episodes that do apply to my body. So I didn't choose to become a dancer, but I could have. And many of us could have if we'd been interested or whatever else, or if we were a little bit more graceful. But my mom always says there was a reason she didn't.

 

Linda Bluestein, MD (28:07.766)

Mm.

 

Ha!

 

Kate Colbert (28:18.002)

give me grace as a middle name. I now know it's because I have crappy proprioception and it's not my fault. But you know, I think that those episodes are fantastic and I actually enjoy them. And I do wanna say, you mentioned something about kinesiophobia, right? This fear of movement, being afraid to move. It's huge. It's just huge in the hypermobile community. And when we're younger and we can do the party tricks and stuff, we love it and we're fine and whatever. And then we, you know, hit 40 or 50 and...

 

and things could change. And for some patients, 20 or 30, and they start really struggling. And I don't know if you remember this, but in my very first medical appointment with you, when I first became your patient, we covered a lot of ground in that first session, right? And it was very lengthy appointment for which I am incredibly grateful. And you had said to me in a follow-up note that you had put in my notes, and it said, you are capable of difficult things. And...

 

I'm not sure anyone in my entire life had ever said that unless they were speaking about intellectual things, right? So I have a bunch of college degrees and I've had a very successful career. I'm capable of those kinds of difficult things and no one's ever judged that. But whether or not, you know, I could do a really difficult hike or whatnot. And much of what I have accomplished in the last few years I have done because I hear you in the back of my head. I'm saying that, you know, last night I helped my husband move a bunch of lumber in our backyard. It was super heavy. I know it's been in the grass for weeks.

 

The guy building the deck is in the wind right now, so it was killing my grass, so it started moving, and it was crazy heavy. And everything I have learned in physical therapy helped me know how to do that work safely. And I'm not suffering any consequences of it today, which is crazy, because we had lifted hundreds and hundreds of pounds with the lumber last night. So yeah, so it's kind of crazy. So, you know, all of your patients, whatever that looks like on that spectrum of ability right now that we're all.

 

Linda Bluestein, MD (29:51.621)

Ugh.

 

Kate Colbert (30:12.95)

capable of more difficult things than we might think. Let's talk about new listeners. So folks who are just finding their way to the podcast, we'll do a little bit of a retrospective, right? So we're gonna look back in time over these first three and a half years of podcasting. So if somebody's new to the Bendy Bodies podcast, maybe they are new to a diagnosis or new to a suspected diagnosis, and they don't really understand how their body's working, they have no idea how to treat it because

 

their doctors don't know how to treat it. They've got a lot to learn and that can be really overwhelming and you have a lot of episodes available. Where should they start? Are there one or two or three podcast episodes that off the bat you would recommend that newbies start with?

 

Linda Bluestein, MD (30:59.502)

There are several that-

 

episodes that I find myself referring more and more people to just because I find that I get really positive feedback and people It's when the lightbulb moments go off or more frequently, so I have numbers for some of them I don't have a number for one of them because I forgot to add it to the list But I'm gonna so I'm gonna mention it first The first one I want to mention is I don't remember the exact title, but it is has to gastrointestinal symptoms, and this is what dr. Leonard Weinstock and

 

And there are certain episodes that when I get DMs on Instagram or emails or whatever, there are certain...

 

a handful of episodes that I end up referring people to most often, and that's definitely one of them. And he just did a really nice job of explaining why people with symptomatic joint hypermobility have gastrointestinal symptoms and what are some treatment options that they could consider. So that's one episode that I think was really, really helpful. And then some of the other episodes that I think are really good for newbies, as you say.

 

Kate Colbert (31:56.65)

That's great.

 

Kate Colbert (32:05.215)

We're gonna

 

Linda Bluestein, MD (32:08.68)

Dr. Courtney Gensemer and Victoria Daler and Jennifer interviewed the three of us as co-authors of a two-part series, Hope for Hypermobility, an integrative approach to treating symptomatic joint hypermobility. And in those.

 

to articles, we really, I think, Victoria was the first author and I have to give her, by far the majority of the credit. She did a phenomenal job in really laying all of this out. And Courtney is just a fantastic human and great researcher and scientist and could really just get the facts in there and make sure that everything was just super well written and.

 

easy to understand at the same time. So that was a conversation about that two-part series of articles, so I thought that was an episode that a lot of people have found helpful. And then episode, that was episode 68. And episode 54, where Jennifer interviewed me on managing mast cell pain, that was helpful. And also she interviewed me for episode number 42 on pursuing a diagnosis.

 

So I would recommend people to those two. And then episode 47 is I believe to date our most popular episode, exploring the link between joint hypermobility and neurodivergency with Dr. Jessica Echols. Oh my gosh, the number of messages after that episode came out was crazy. I mean, the light bulbs that went off in people's heads. Insane, huge topic. Yeah, yeah.

 

Kate Colbert (33:30.391)

I'm sorry.

 

Kate Colbert (33:33.982)

Yeah, huge topic. I literally was just talking about that topic the other day to someone else. Yeah.

 

Linda Bluestein, MD (33:39.526)

Huge, huge topic. And then the last one that I wanted to mention is episode 35, re-educating mast cells with Dr. Ann Maitland. She's great, that was a really, really popular one. So I think that's kind of a handful of episodes that I think people would really find helpful. And I know you had, when we were kind of discussing some questions beforehand, one of the questions that you asked me was,

 

Kate Colbert (33:49.846)

She's great.

 

Kate Colbert (33:53.461)

Yeah.

 

Linda Bluestein, MD (34:08.254)

what was easier and more fun and more rewarding, working one-on-one. So I just wanna touch on that as well, because in some ways, having one-on-one conversations is easier, because you know who you're talking to, right? You know, I do a deep dive, as you explained. So through the intake process, so I know exactly what they're struggling with, and I know what information I think they might benefit from the most. But the podcast listeners are very diverse. Their needs are very diverse. So...

 

Kate Colbert (34:12.37)

Yeah.

 

Kate Colbert (34:22.45)

Yeah, yeah, I know, yeah.

 

Linda Bluestein, MD (34:37.406)

There's a lot of overlap between what they're dealing with, but they're also going to be very different. But it's so rewarding to hear from the community that they found the podcast helpful. I've had physicians email me and say, I never knew what these conditions were before. I listened to your show, and it was the most in-depth education I ever had on symptomatic joint hypermobility, and I now can identify these conditions in my patients.

 

Kate Colbert (34:53.034)

Wow.

 

Kate Colbert (35:05.215)

Wow.

 

Linda Bluestein, MD (35:05.906)

And that just, you know, like when I get messages like that, it makes me so happy. It makes all the work worthwhile. Yeah. What's challenging about the podcast is keeping people's expectations realistic because just like when I go on someone else's show, I sound like I know everything and I discuss my success stories and I talk about my experiences and my expertise and I probably come across that I can heal everybody. But, but.

 

Kate Colbert (35:12.741)

to.

 

Kate Colbert (35:27.122)

Great.

 

Linda Bluestein, MD (35:33.226)

That's not true. We know that our healthcare system is very broken. Even when people come to see me, I'm not able to do everything. I only know a very small portion of science. We, as a scientific community, we only know a small amount.

 

if you really think about it, there's so much more that we have to know. So I think that probably that's one of my biggest frustrations is sometimes if I'm working with a patient or a client and they might tell me, I'm thinking of switching PCPs and I'll say, well, why? I'm like, I think you're jumping ship too soon. If this person is empathetic and they are curious and they want to help you, it's exactly what you said earlier about let's think about Team Kate, let's...

 

Kate Colbert (36:09.172)

Yeah.

 

Linda Bluestein, MD (36:20.674)

figure out how I can work with the system that you're in, how we can work together, and showing that you want to be a team is so important. Because otherwise, it's easy to be on an adversarial type relationship, which is of course never helpful for anyone. And we also want to avoid the grass is greener phenomenon. You know, and a lot of people, they do, they go chasing. So it can be a balance, it can be really challenging because maybe that next person is going to really have the answers for you.

 

Kate Colbert (36:39.954)

Yeah.

 

Linda Bluestein, MD (36:50.294)

But that's one of the things I find challenging with the podcast is it's like when you're giving a lecture, it sounds like everything's so great, but in actual clinical practice, nothing works on everyone, nothing. It's.

 

Kate Colbert (36:57.172)

Yeah.

 

Kate Colbert (37:03.314)

Yeah, it's a really good point. And I think it's maybe good for listeners to realize that even if they hear something, whether it's in their doctor's office or on a podcast like yours, that doesn't sound exactly like what they're experiencing. There's still, it still may be a kernel. So I've always thought about when I do work for people. So as a writer, I often write things for people and they're like, no, right. I've written speeches for CEOs or whatever else. And they're like, that's not it.

 

And I would be crust fallen at first thinking, oh my gosh, it was a total waste of my time until I realized that a lot of people can't work from a blank page. And so if I create something for them and they're like, it's not this, but what it really is, and they start scratching off, I've given them a context in which to think. And I do think that your podcast gives people really great examples and a context in which to think. So they might hear a story or they might hear something about a particular sort of sub diagnosis.

 

related to how the GI tract works in EDS patients and go, it's not exactly what's happening with my guts, but I feel like maybe there's something like that. And if they take it to their doctor or they do some of their own reading, they might find out what it actually is. So maybe it's not that, but it's something else, right? You give that kernel and then somebody else has the aha. They're like, oh, right, it's not, it's not this kind of a hernia, it's a hiatal hernia, or it's not this, but it's this.

 

Linda Bluestein, MD (38:11.022)

Mm-hmm.

 

Linda Bluestein, MD (38:17.218)

Mm-hmm.

 

Linda Bluestein, MD (38:28.268)

Mm-hmm.

 

Kate Colbert (38:29.446)

And so I think that context is really huge. I do want to say that I was multitasking while we talked and the Dr. Weinstock episode was episode 34 in case anybody was scribbling down episode numbers. So that was up back there. And I agree that, you know, I think you're absolutely right. And it makes sense to me when I think about it, how you explain that it's one thing to be sitting in front of a patient where you know their history and you know their symptoms and you're looking at their body and.

 

Linda Bluestein, MD (38:44.073)

Perfect.

 

Kate Colbert (38:56.402)

and you can leave out all the other things you know that are not relevant to them. So you can focus on what they need help with now. Whereas on the podcast, you have to be talking about things that are sort of most common among hypermobile patients. And sometimes you'll talk about something that's sort of interesting and rare, but that might not apply to everybody who's listening. And so that has to be hard. And so one of the things I've actually appreciated about your podcast. So.

 

Certain podcasts run really short episodes and you tend to actually run longer episodes and I love that because it sometimes takes me three sit downs to listen to a whole episode and I'm cool with that and luckily all the podcast players remember where you left off. And because what I love about that is because sometimes I'll listen to 20 minutes for something and I learn something and I think that's interesting but it's not something that's gonna change my life or health or the way I treat my conditions.

 

Linda Bluestein, MD (39:35.885)

Heh!

 

Kate Colbert (39:48.978)

And then bam, somewhere at minute 35 or minute 45 or something. It's like, it's the thing I needed to know from that episode. And I'm scribbling notes and I'm making changes to, you know, or I'm reaching out to you for my next appointment to say, like, can we talk about this thing related to my math cells or whatnot? And I do think you're absolutely right. I love what you just said about being careful not to jump ship. If you have a doctor or other provider who is listening, if they're empathetic, if they're willing to learn, if they're curious.

 

Linda Bluestein, MD (39:55.372)

Mm-hmm.

 

Kate Colbert (40:18.83)

You know, we can as patients teach them a lot. I have two resources that I turn all of my providers to. So when I developed tethered cord syndrome, I started having a lot of problems neurologically because of my tethered spinal cord, which became very, very dramatic and life limiting. I was working with a neurophysical therapist, so a DPT with extra training and neurologic conditions.

 

and I was working with her and she had never had an EDS patient before. And so I've been trying to teach her along the way and I told her there are two ways that you can kind of learn what you need to do. I told her to listen to your podcast and I told her to attend the Ehlers-Danlos Society Conference and she does both. And every other resource I've ever talked to her about she goes and checks it out which I'm super grateful for. And what I have done and this is one of the things too I always tell people

 

Linda Bluestein, MD (40:48.878)

Hmm.

 

Linda Bluestein, MD (41:01.878)

Hmm. Wow.

 

Kate Colbert (41:11.378)

If you live in Louisville, Kentucky or whatever, and you have a doctor who is great, but they don't, you're their only EDS or HSD or Marfan's patient. If you know other patients that live in that region, send them to that doctor. What I've done is now my PT has several EDS, so I do a lot of coaching and mentoring to local folks who have EDS. I send them and they all have, I actually know one gal who's duplicated my entire medical team.

 

Linda Bluestein, MD (41:23.01)

Hahaha

 

Kate Colbert (41:37.834)

Right? So she, you know, she's now a patient of yours. She goes to my neurophysical therapist. She goes to my primary care doctor who's in another state. Like she's literally rebuilt her whole team. And I've checked in with some of those providers and asked, are you starting to get a bunch of EDS patients? And they're all like, oh yeah, I have six of them now. Right? And they had none three or four years ago. And so the more patients they see who look like me, the more they can help me because they can put the pieces together. So you can, you know.

 

Linda Bluestein, MD (41:52.942)

Hahaha

 

Linda Bluestein, MD (42:05.142)

Yes.

 

Kate Colbert (42:05.906)

Patients are a huge part, I think, of educating doctors. I love that.

 

Linda Bluestein, MD (42:08.002)

Oh, totally. When you said that about the excuse me.

 

When you said that about the neuroscience PT, yes, the light bulb went off and I was thinking about a patient who I know you referred to me. And I was thinking about how amazing that neuroscience PT was for this particular person. And you're right, the more, you know, it's funny, because I think you said something about

 

what babies we are when we graduate from medical school. But when you come out of residency, you only know this much too. I mean, you hopefully are learning throughout your entire career. And I think it's wonderful that you do that because the more people that we have in our practices, the more that we learn. I mean,

 

Kate Colbert (42:37.552)

Yeah.

 

Kate Colbert (42:41.266)

Right?

 

Linda Bluestein, MD (42:53.102)

I certainly feel like I can do a much better job of taking care of people now than I could five years ago because I have five more years of experience, clinical experience, and five more years of knowledge. And of course, science has evolved in the meantime too. So I love that you do that because that gives those clinicians the opportunity to really expand their knowledge base.

 

Kate Colbert (42:59.007)

Yeah.

 

Kate Colbert (43:14.534)

Yeah, well, and I sometimes ask, like, what, you know, are you interested enough in this condition to want to see more of us or to learn more? And sometimes I've had some people are like, yeah, you know, I've got enough on my plate. But I've had plenty of providers who are like, yes, it's fascinating. I was at the dentist a couple of weeks ago and we couldn't figure out why I have this sharp. I'm like, can you just grind down? I have a tooth that's sharp and it's causing like a lump on the inside of my cheek. Who and my speech therapist, since I have issues swallowing since my

 

Linda Bluestein, MD (43:21.58)

Mm-hmm.

 

Kate Colbert (43:43.21)

tethered cord surgery and she had asked about it. Very long story short, the dentist could not figure out why I was complaining about this sharp tooth. He's like, your tooth is normal. Like it's not, there's not a chip, it's not sharp. I'm like, dude, like if I stick my finger against it, it hurts my finger. Like I get that I have velvety soft skin. And so I'm like, put your finger along the edge. Don't you think that's sharp? And he's like, no. And so I would, and I almost got out of the chair and I thought, don't be stupid, Kate. Like something is causing an injury in your mouth. And with your...

 

Linda Bluestein, MD (43:51.504)

Mm.

 

Yeah.

 

Kate Colbert (44:11.902)

delicate tissue, you can't go to an oral surgeon and have that cut out because it's not going to heal or not going to heal well. And so I kept explaining and I was showing him like this tooth hurts my cheeks, but these teeth don't. And this and finally you could see the light bulb go off on his face and he reaches for the grinder from the hygienist. And I told him, I said, I don't care if you make that molar really short, like grind it halfway up if you have to and make it flat.

 

And he took the grinder and he grind it way, way up. And he took it out of my mouth and I felt it with my tongue. And I reached up and I high fived him. And I'm like, yes. And so here was the epiphany. The natural sharp edges of my molars are becoming intolerable to the delicate tissue in my mouth. But that's the natural edge of my teeth. And so he said, I've never seen this in a patient before. And I said, I know you probably thought I was crazy. And he says, no. He says, I knew I was missing something.

 

Linda Bluestein, MD (44:45.77)

Ah!

 

Linda Bluestein, MD (44:57.07)

Hmm.

 

Right.

 

Linda Bluestein, MD (45:08.103)

Ooh.

 

Kate Colbert (45:08.87)

And that was a really powerful moment, right? I knew I was missing something and I helped him get there. And I kept in my mind thinking, I'm not explaining this in a way that's making sense to him. And so I just kept picking different analogies and different words and touch it with your finger until we got where we needed to be. And so, and will I be having a lot of my other teeth ground down to flatten the mouth? Yes, I will. So I don't care how little they get as long as they don't hurt my cheeks.

 

Linda Bluestein, MD (45:11.141)

Mm-hmm.

 

Linda Bluestein, MD (45:14.752)

Yeah.

 

Kate Colbert (45:37.042)

But no, I love what you're saying here about how we can all work together and how one, and the whole not giving up, right? I think that's one of the things you and a lot of you guys have talked about a lot is not giving up on things. And so a lot of people will say, I tried physical therapy. So I have craniocervical instability. I was even thinking about that as we were starting this recording. I thought this would be one of the first times I've been on camera where I wouldn't feel awkward if I put my collar on my neck because I'm among friends here.

 

Linda Bluestein, MD (45:45.486)

Mm-hmm. Yes.

 

Linda Bluestein, MD (45:52.526)

Mm-hmm.

 

Linda Bluestein, MD (46:03.499)

Mmm. Yeah.

 

Kate Colbert (46:07.199)

But, you know, yeah, and see, so it's just, you know, I'm just thinking about, I just totally lost where I was going with that. But no, oh, you were talking, we were talking about neurophysical therapy, right? And so a lot of people will say, well, I've tried PT and it didn't work, right? I have a bad neck. I did 12 weeks of PT and it didn't work. And it's like, well, when I got my cord detethered, it's been 15 months of building muscles in my thoracic spine, which I never really needed before, right? As a...

 

Linda Bluestein, MD (46:13.954)

Hahaha!

 

Linda Bluestein, MD (46:19.47)

Mm-hmm. Oh, right, right.

 

Right.

 

Kate Colbert (46:33.598)

child who was born with a tethered spinal cord, my cord kind of held my torso in place, right? And it became very hypermobile in my spine after the detethering. It had lots of benefits to my health, but also had to build that muscle. It's taken me more than a year. And I go to PT twice a week, right? And so thinking you can go 10 times and get fixed. And also, not all doctors are created equally. Not all PTs are created equally. So I kept getting broken up with by ortho-PTs.

 

Linda Bluestein, MD (46:42.51)

Mm.

 

Linda Bluestein, MD (46:49.634)

Wow.

 

Kate Colbert (47:01.766)

And then finally, one of them, and I'm super grateful to her, one of them said, Kate, I think your hip problem is neurologic. And she's like, I think your nerves are not firing the muscles to move the hip the way that it's supposed to. And she's like, and I don't know how to fix that. She's like, I think you should need to see a neuro-PT. I didn't even know such a thing existed. Turns out we have several of them local to me. And she was absolutely right. It was, it was.

 

Linda Bluestein, MD (47:10.647)

Mmm.

 

Kate Colbert (47:28.81)

damage from my tethered spinal cord. And then after the cord surgery, I've been having to sort of work on those nerves. So not giving up, I think is so important for patients. And I think your show does such a great thing on that. So let's talk about a couple of other fun things. So let's talk a little bit about the practicalities of living with hypermobility. So one of the things I really appreciate.

 

Linda Bluestein, MD (47:36.884)

Mm-hmm.

 

Linda Bluestein, MD (47:42.67)

Hahaha.

 

Kate Colbert (47:53.002)

I'm not surprised to know that the medical, like the deep dive medical conversations on the podcast are the most popular podcast. But you do often, sometimes within those really serious conversations and sometimes separately, as well, talk a lot about the practicalities of just living with hypermobility, right? And you share hypermobility hacks to kind of help people understand their bodies a little bit better or navigate the world more safely or more enjoyably. What kind of, for folks who are new or who are looking forward to the future episodes that are gonna be dropped,

 

What kind of hypermobility hacks can listeners expect to find? What is a hypermobility hack and how do you share them on your show?

 

Linda Bluestein, MD (48:28.842)

So one that we just recently shared on an episode that was actually released today was it was a hack that I had shared. So When I am evaluating a patient in person, I do have them, I do go through the Beighton Score with them and I do also ask them if they have any particular party tricks. And I don't want them to, I say wait.

 

Let me get my camera ready so long as they've signed the photo consent form. But I like to document these things. I'll take a short video or I'll take a photo because then I tell them don't do these party tricks.

 

Kate Colbert (48:50.71)

I'm going to go.

 

Hehehe

 

Linda Bluestein, MD (49:02.802)

ever again. So I have them show me and you know again go through the Beighton Score I say don't hurt yourself. I never I never touch them. I have them do it on themselves always and I feel like getting those photos and I tell them store those photos in a safe place so that way if a future physician is

 

Kate Colbert (49:08.19)

Yep. Right. Yeah.

 

Kate Colbert (49:14.134)

Yeah.

 

Linda Bluestein, MD (49:24.822)

questioning your generalized joint hypermobility, you can show them the photos and say, look, this was on such and so date, these are the maneuvers that I could do, et cetera. There are other, there are all kinds of hacks that can really make a huge difference in terms of your quality of life. For example, some of the things that we've heard from different guests like Leslie Russick or from Dr. Chopra about things like humming.

 

Kate Colbert (49:32.413)

Smart.

 

Linda Bluestein, MD (49:50.506)

in order to not cleanse her teeth. So I have done a lot of work on my jaw. In fact, I just had my TMJ joint injected yesterday by my doctor, who I'm so excited is going to be a future guest. She it's going to be fabulous. She's amazing and she's always telling me like all these little hacks for avoiding open jaw locking, for example. Thank God I've never had that, but that's a horrible problem to have.

 

Kate Colbert (49:50.728)

Mm-hmm.

 

Kate Colbert (50:04.122)

Oh cool.

 

Linda Bluestein, MD (50:15.73)

So I'm super excited for her to share those hacks. But a lot of, she's told me this, Dr. Chopra said this, like I said, Dr. Leslie Russek, who is a physical therapist, has shared this. If you are someone who clenches a lot, humming can help you not clench, because you can't really clench and hum at the same time. And if you just tell yourself, don't clench, don't clench, that really doesn't work. So I sometimes get like a little...

 

Kate Colbert (50:37.363)

Yeah.

 

Linda Bluestein, MD (50:41.646)

I forget what she called it. She told me yesterday what it was, but sometimes I start to like kind of like.

 

Oh, it's a fibroma. She said, I have a little fibroma on my upper lip. So I start to kind of play with that and it makes it worse and worse. So, and she calls that posturing. Well, to just tell yourself, don't do it, don't do it, really doesn't work. But that's where she said, you need to hum in order to keep yourself from doing that. So there's lots of little things that we can do that can really make a huge difference, not just in the short term, but in terms of the...

 

Kate Colbert (51:07.434)

Yeah.

 

Linda Bluestein, MD (51:15.686)

long-term trajectory for our health. There are everyday choices that we make that can make a really big difference. Knowing how to push those boundaries of movement can be really helpful. So like another one of the hacks that I use all the time is if you wanna call this a hack, I ask people to come up with their red light, yellow light, and green light activities. So red light.

 

Kate Colbert (51:17.406)

Yeah.

 

Linda Bluestein, MD (51:40.514)

definitely flares up their symptoms and keeps them flared up for an extended period of time. Green light is their safe activities and yellow light is somewhere in between. And the goal over time is to get more things from the yellow light zone into the green light zone and maybe some of those red light things you're never going to do.

 

Kate Colbert (51:57.642)

I love it.

 

Linda Bluestein, MD (52:01.398)

But the goal is to be able to do more and more. And like you, I used to be, I spent an entire month on the sofa in 2010. An entire month, which I apologize to people listening to this who are maybe in their 20s and spend most of their days on the sofa. Because I can't even imagine how hard that would be.

 

But I do have a small tiny sample of that from when I was basically at my worst. And now I can go for reasonable hikes. And I'm in my late fifties now and I was in my early forties then or mid forties. And so I think that it's just important to know that you can make these small changes, which for a lot of people, again, nothing works for everyone, but a lot of these small little changes, these little hacks.

 

Kate Colbert (52:51.785)

Yeah.

 

Linda Bluestein, MD (52:52.278)

will help you to get the next step, and the next step, and the next step, like using supportive braces to help with your proprioception. That's another hack, right? So you put the brace on your elbow, for example, and it tells your brain, oh, I'm reaching end range, stop, because you and I don't have that normal proprioceptive or haptic feedback, so we don't know that we're getting near the end range. So there's all kinds of things like that.

 

Kate Colbert (53:00.094)

Yeah. Right.

 

Kate Colbert (53:14.08)

Yeah.

 

Kate Colbert (53:20.154)

I love that. And I think your guests, you're full of awesome hacks and a lot of your guests are really full of them and that they're really great. So yeah, I love that when you're talking about like putting that brace on your elbow, whatever, I actually call it a touch reminder. So it's some, even like if I wear like a neck brace, but I wear it really loose, so it's not necessarily even holding my head up or helping sort of rest the muscles. Sometimes it's just there as a reminder not to do something stupid if I'm kind of feeling really flared or.

 

Linda Bluestein, MD (53:33.022)

Mm-hmm.

 

Kate Colbert (53:46.15)

My mom has just started trying out some of the hacks. So she has a lot of swelling behind her knees. I couldn't figure out why. And then I noticed that when she lays down, she lays on the couch to watch TV instead of sitting or putting her feet on the floor. And if she lays down and her knees are hyperextending and so her knees are buckling backward. And so she's damaging that tissue and it's swelling. So I'm like, just throw a little pillow or roll up a blanket and put it under your knees. Like that's it. It was like this one change.

 

Linda Bluestein, MD (53:51.557)

Mm.

 

Linda Bluestein, MD (54:02.015)

Mmm.

 

Kate Colbert (54:11.862)

and it's making a big difference. So if I can also mention the humming, so you know, that is a dual purpose hack. So not only does that help with the jaw clenching, humming engages the vagus nerve. So when I was having a lot of trouble with brainstem compression, when my cord was tethered, this can be helpful for POTS sufferers as well, is that if I would start to like flush my body, we'd get hot and I start to sweat and I feel my heart rate rising and stuff,

 

Linda Bluestein, MD (54:25.863)

Mmm.

 

Kate Colbert (54:41.626)

if I hummed, I could actually reverse those symptoms faster. And so I have my physical therapist, sometimes if I have some sort of flare during a session, she'll actually get her face right in front of my face, because you feel stupid doing it in public and she'll just start humming. And then you don't have to know a song. I mean, literally just go, mm, like, or think about like yoga, just, oh, and it works, so it really helps. I love that. Hypermobility hacks, I mean.

 

Linda Bluestein, MD (54:55.342)

Mm-hmm. Mm.

 

Linda Bluestein, MD (55:01.195)

Mm-hmm.

 

Kate Colbert (55:08.354)

Yeah, come for the medical information, stay for the hacks, I love it. So a couple of other quick questions that I know that I've taken a lot of your time, but your guest list really has been kind of a who's who of hypermobility medicine, I think, about the folks who are on your show. You've really amassed this powerful community of clinicians and scientists, patients, advocates, others.

 

Linda Bluestein, MD (55:13.276)

I love that line.

 

Kate Colbert (55:34.648)

What has been your favorite part about working with other professionals who care so much about hypermobile patients?

 

Linda Bluestein, MD (55:41.674)

What's most amazing to me is how generous people are with their knowledge. There are.

 

Kate Colbert (55:47.026)

Yeah.

 

Linda Bluestein, MD (55:48.258)

very, very few people. I used to be able to say zero, but now I can't say zero anymore. But there are very, very few people who say no to an interview, very few. And usually if they say no, it's just because they're so crazy busy. So that's the first thing I wanna say is that most of these professionals who are caring for hypermobile patients really do care and they really do want to help. And so, you know, it takes time. They're taking time out of their schedule

 

Kate Colbert (55:57.482)

Wow.

 

Linda Bluestein, MD (56:18.192)

they're not making money while they're sitting in the chair talking to me. And so it's really special that they take the time to do that. And I love hearing different people's perspectives and learning from people who are also on the front lines of treating patients. Because we can look up literature articles and we can read things, but there's nothing like working one on one with somebody and then having them come back and say this worked, this didn't. We have now.

 

Kate Colbert (56:21.94)

Yeah.

 

Linda Bluestein, MD (56:45.81)

evidence-based medicine, which of course randomized controlled trials and things like that are an extremely important part of that. But also as clinicians, our own experience in working with our patients is also really important.

 

So being able to talk to other people who maybe, maybe it's a neurosurgeon, maybe it's a neurologist, maybe it's a cardiologist, when I see them at meetings or have various conversations on a podcast, it just really helps me broaden my horizons and I love learning from different people. And we can also share about the struggles that we face caring for people with such complex problems. And oftentimes you can get hacks.

 

Practice, medical practice hacks that way, which is fabulous. I've gone to several mass to cell conferences. I've spoken at these conferences, which are really by invitation only. And it really allows us as a group to learn from each other and to learn how do you take care of these people who have so many.

 

Kate Colbert (57:26.88)

Yeah.

 

Linda Bluestein, MD (57:47.702)

symptoms, how do you unravel the incredible complexity and it's kind of like all the noise that's going on inside the nervous system. When you have so many symptoms, it's so hard to correlate things because there's just so much going on. And it's only when you start to do better that I feel like you can really start to make correlations more easily. Oh, I ate this, then I felt worse. I did this.

 

I felt better. So it's really hard when you're in that really bad place. And then the last thing I wanted to mention about that is I do want to thank Dr. Chopra. He has been an amazing mentor to me, Dr. Pradeep Chopra. And when I first started writing about EDS back in 2017, I wrote my first journal article. And at that time, I was trying to figure out what was plan D going to be basically. And so I thought, well, maybe I can...

 

Kate Colbert (58:40.821)

Yeah.

 

Linda Bluestein, MD (58:44.594)

publish a few articles here and there. And he said, you need to open a practice. He's an anesthesiologist. I'm an anesthesiologist. We know what each other's training is. And he said, you understand the different systems. You have the training. You are in the right place to take care of people with these conditions. So he was an amazing mentor, is an amazing human being. And

 

has been on the show numerous times, which is really fabulous, but it's, it's just amazing to me how people are so generous with their knowledge. It really is wonderful, whether they're patients or scientists or clinicians, all of them, all of them.

 

Kate Colbert (59:22.034)

Yeah. Yeah, I have found that in the EDS community. I have found that for sure. I, you know, I pick up the phone once when I was going to be in Charleston and I wanted to go visit the Norris lab where they're doing research to identify candidate genes for hypermobile EDS. And I said I used to be a journalist. I was really clear. I'm like, this is not on the record. I'm like not coming as a journalist. You don't have to tell me details about discoveries. You haven't.

 

published yet. I said, but I would just love to come just be a hypermobile person to come say thank you, tell the members of your lab to thank them for the work they're doing on our behalf and learn more about what you're doing. And they're like, sure, when are you going to be here? And they gave my husband and I a tour and we had meeting with Dr. Norris and Dr. Gensemer. And it was just a really lovely experience. And that's been my experience with everyone in the EDS community. They're just so generous. So just so lovely. Okay, a couple of, let's talk about what's new.

 

Linda Bluestein, MD (01:00:16.77)

Ha ha!

 

Kate Colbert (01:00:17.97)

So I want to talk a little bit about what's new. So I've always believed that sort of all good things are eventually ripe for some sort of evolution to make them from good to great. And so I'm kind of excited to talk about the evolution of the Bendy Bodies podcast. I know you've got some big changes sort of afoot. So tell me a little bit about what's new at Bendy Bodies.

 

Linda Bluestein, MD (01:00:39.474)

I am very excited about what's coming up. We've done so many great episodes in the past, but I really felt it was so important to go all in on helping all hypermobile people, not just dancers, not just people with EDS, but everyone who has hypermobility and all of the experts who work.

 

to benefit those people with hypermobility. So I'm still very busy practicing clinical medicine at Hypermobility MD, and I really enjoy my expanded role as a healthcare educator and coach through my edu-coaching model. But I also have really decided to become the voice and the face of the podcast that I founded in 2022.

 

Linda Bluestein, MD (01:01:27.126)

While I'm still very busy practicing clinical medicine at Hypermobility MD and enjoying an expanded role as a healthcare educator through my edu-coaching model, I've also decided to become the voice and face of the podcast that I founded in 2020, now solo hosting and periodically inviting guest hosts to join me in interviewing the best and the brightest minds in hypermobility medicine.

 

I'm also super excited to announce that my new website was just launched, www.bendibodyspodcast.com. And I will be also expanding my presence on social media as a way of providing as much education as I possibly can. And I've also been doing more speaking, for example, at the EDS conference this past summer. And I'm also going to be publishing more papers, taking more time to visit other EDS specialists,

 

which I did get to visit last summer and play a role in envisioning the future for patient care for people with hypermobility.

 

Kate Colbert (01:02:31.434)

Wow, gosh, that's a lot. I mean, it's super exciting. Super exciting to see you making all the insights available and relevant to everyone with symptomatic hypermobility, which is super exciting. And I've actually often struggled with that. When I was first diagnosed, it was like, do I go to, do I listen to stuff and go to resources that are specific for EDS? I remember going to some seminars from the Marfan Society and I found them incredibly relevant.

 

Linda Bluestein, MD (01:02:33.387)

Heh!

 

Linda Bluestein, MD (01:02:57.505)

Mmm.

 

Kate Colbert (01:02:59.846)

And so I love the fact that you're just sort of kind of trying to cover it all and put us all bendy bodies into one bucket, which I really, really love that. We're one big bendy family now, which that's really great. And I'm actually loving seeing more of you on social media and doing reels and answering interesting questions and seeing you on stages. And I love the article that you wrote, the hope for hypermobility. So thank you. You know, you just said a moment ago that you have.

 

You were kind enough to mention how generous all the people are who have come on your show but you are as generous if not more generous than all of them as well because you're doing all of this and you just You just rattled off a million things that you're doing for the patient population That people can access at no cost but listening to the podcast, you know reading the papers You know coming to some of the conferences is not necessarily free but most of the public conferences are really quite affordable and

 

So there's just so much in what you're doing on social media to really raise awareness and to make sure that there's good information out there that is based on medical insights, based on clinical practice, and based on sound science. It's so important right now. There are a lot of podcasts we could probably listen to where people are talking about EDS and maybe they're hosted by patients themselves, but there is, why would somebody listen to me talk about EDS if they could listen to you? The fact that this is...

 

Linda Bluestein, MD (01:04:09.32)

Mm-hmm.

 

Kate Colbert (01:04:26.57)

the Bendy Bodies podcast with the hypermobility MD. The fact that this is Dr. Linda Blustein matters. It's not your sort of guesswork or your own personal experience. It's all of it combined, everything you've learned from your patients and from the scientific work and from your perspective as a physician, I think is just so huge. So I'm so excited. I really think the sky's the limit for Bendy Bodies. So I just can't wait. Super jealous looking at you wearing your.

 

bendy body shirt, I'm gonna have to get, I need one of those. So I can't wait to see what's really on the horizon for you and continuing to support you. As I said, I listen to the podcast whenever and wherever I can find time. So if I'm in the car or if I'm doing my hair and makeup or if I'm soaking in a bubble bath, and I have literally never listened to an episode without then subsequently referring one or more people to go listen to that episode for a very specific reason. So.

 

I'll hear something and I'll think, oh, I know somebody who needs to hear this, or this is great information. So, you know, in these last few years, just in the five years since my diagnosis, awareness around connective tissue disorders and hypermobility conditions has really increased exponentially. And I really am quite sure you have been a huge part of that happening. And I'm so grateful to you for making that revolution part of your mission and being part of that revolution so that...

 

patients like me and patients like so many others that I know, don't just have, don't just get to hear that we're worthy of the care that we seek, that we can actually get the care and the information and the treatments that we seek. So I am so grateful. So here is to the next, however many episodes there are going to be hundreds and hundreds probably. So thanks for letting me steal the microphone today and put you in your own hot seat on your own show here.

 

Linda Bluestein, MD (01:06:05.311)

Yeah.

 

Linda Bluestein, MD (01:06:14.094)

Ha ha ha.

 

Kate Colbert (01:06:14.342)

at the Buddy Buddies podcast. I will be listening forever and ever. So grateful to you and wishing you all the best with all that's to come.

 

Linda Bluestein, MD (01:06:23.134)

Oh, well, thank you so much. I think you were like I was about to cry there for a second because I haven't really thought about having a role like that, but I hope that that's the case. I just know when I first saw a rheumatologist in 2011 and I went into that office, went into that appointment and he said, why are you here? And I said,

 

Kate Colbert (01:06:27.935)

Ha ha ha!

 

Kate Colbert (01:06:49.116)

Mm.

 

Linda Bluestein, MD (01:06:50.61)

I want to know what's wrong with me. And he interpreted that as I wanted there to be something wrong with me. And it's like, no, I don't want there to be something wrong with me, but I'm having all these problems and I feel like there has to be an explanation. And then I went to another doctor in 2012 and he did diagnose me with hypermobile EDS at that time, but he told me, there's nothing you can do, so see ya.

 

Good luck. So I don't want people to be feeling like there isn't anything that they can do. And I hope that there can be so many more things that people can learn. And I just really appreciate so much everything that you and other patients have taught me because we do, we learn from our patients and it's such an honor to be able to serve people in this way. I remember...

 

I knew my anesthesia career was coming to an end the first time that it did. And then I did some locum tenems for a while. I was able to do, I was able to get back and do that for a bit.

 

But I remember being in the operating room during an open heart case and standing there and all of a sudden having this epiphany, this person's chest is cracked open and I'm infusing all of these different drugs to keep their blood pressure where the surgeon wanted it to be, keep their heart rate, all of these things, keeping them asleep. And I just realized, wow, this is such a privilege.

 

Linda Bluestein, MD (01:08:25.266)

And I miss that, you know, in some ways I really miss that. But this is even better. I can help even more people. Because that was one at a time, you know, that, yeah.

 

Kate Colbert (01:08:25.479)

Yeah.

 

Kate Colbert (01:08:33.862)

Yeah, that was one at a time. That's exactly, I mean, it's such a beautiful story and you're absolutely right. You used to take your expertise and your skills one at a time, one to one, and now it's one to many. And I think of you all the time, now being just 15 months out from a pretty serious surgery, a neurosurgery.

 

And boy, oh boy, am I really glad that your residency was in anesthesiology before you came into treating hypermobile patients because it was complex. Anesthesia is complex for EDS patients, especially those who have pretty significant MCAS or POTS symptoms and those who have unstable necks. So we sort of started at the bottom of my spine at the spinal cord surgery, but was suffering from CCI going into it.

 

and you wrote a peer-to-peer letter to my anesthesia team. I called the hospital the day before the surgery and said, have you assigned my anesthesiologist? You gave me all the language, so I knew what to say. Have you assigned my anesthesiologist yet? And they said, no, but we will by two o'clock. I said, great. I said, I uploaded this document that I need for them to read before tomorrow and is there a chance that they could call me? And at six o'clock that night, the night before my surgery, I received a call made from the operating room.

 

Linda Bluestein, MD (01:09:39.778)

Yeah.

 

Kate Colbert (01:09:59.474)

by the anesthesiologist assigned to my case who had just read the letter you had written and gone through it. And she called to ask some questions. And the next day I spent about 45 minutes with her. And then they took me into the operating room and there was a team of three anesthesia specialists in the room. And they had all read the letter and had all consulted on exactly how they were going to modify their protocols in order to be safe.

 

for me, rather than just me saying, just give me what you're pushing, right? Like, I might do that like, you know, if I go out for a cocktail with a friend and they say, what kind of vodka do you want in your martini? Give me what you're pushing, right? But that's not what I want in an operating room. I want them to understand the consequences of different decisions based on my body. And by the way, my physician, the surgeon, I asked him to look at the letter and he actually handed it back to my husband without looking at it.

 

Linda Bluestein, MD (01:10:39.886)

Hahaha

 

Kate Colbert (01:10:58.29)

And he says, I know about EDS. And I took a deep breath and I came back to the whole Team Kate and I said, hey doc, I said, unless I'm misunderstanding something, I said, I think we all have the same goal here today. We want me to have good outcomes from this surgery. And I said, we're all on Team Kate. And I said, and a member of Team Kate who is not here in this room with us right now, at this time I have the neurosurgeon and the anesthesiologist and a nurse in the room. And I said,

 

Linda Bluestein, MD (01:11:00.694)

Hmm.

 

Kate Colbert (01:11:26.754)

This letter outlines very specific adverse reactions I have had to anesthesia in the past and a professional's opinion on how to avoid that and to give me the best possible outcomes. I said, I am not trying to offer you EDS 101 before we walk into the operating room. And I said, but I want the best outcomes, don't you? And I literally stopped talking. I just said, don't you? And of course he wasn't going to say no. And so he nodded and he took the letter back.

 

Linda Bluestein, MD (01:11:42.007)

Yeah.

 

Linda Bluestein, MD (01:11:48.46)

Hahaha

 

Kate Colbert (01:11:56.37)

and he started going through it. And then he asked one or two questions and they handed it back to the anesthesiologist, right? And so that was a moment where I realized I didn't think my surgeon was in the proper head space for us to be rolling me in. And so I gave us a gut check and got us all back on the same page. And your letter gave me the credibility and the information to be able to do that. And so...

 

And I know that you do that for a lot of patients and you provide information on the podcast that's getting people to ask the right questions. So you're helping thousands. I mean, gosh, 215,000 downloads of the podcast so far. Think about how many people you've helped. So pretty amazing. Please keep doing it.

 

Linda Bluestein, MD (01:12:36.654)

Absolutely, and I am so glad that you mentioned that because the way that you handled that was so critically important, reminding them that we are here for the same purpose. And sometimes it really does take that silence and fewer words, just a couple of words like that where the person and giving them that space to really...

 

Kate Colbert (01:12:57.258)

Right.

 

Linda Bluestein, MD (01:13:05.398)

That's right. Like, okay. So I'm so glad that was the case because, yeah, I mean.

 

Kate Colbert (01:13:14.762)

I would have walked, I was very clear with my husband who was sitting next to me in pre-op and I was very clear with him that when we start to talk about how they're going to stabilize my neck during the procedure and how they're going to intubate me, if I don't feel like their approach is going to be safe, I'm going to get off the table and leave. Like I will literally walk away from the surgery moments before it begins. And I was very clear in my mind about that.

 

And that was not me being argumentative or whatnot. I just knew that if they further damaged unstable craniocervical joint, I could be severely injured for life because I wouldn't speak up. And so, I asked if they would do fiber optic innovation and she's like, I'll go you one better. She's like, we're gonna do video guided. And I'm like, that's awesome. And I asked, are you gonna have me wear my collar? And the doctor was actually dismissive about that too and handed the collar back. And I'm like, wait, could we talk about why I'm asking this question?

 

Linda Bluestein, MD (01:13:50.892)

Right.

 

Kate Colbert (01:14:10.502)

And so she actually, when we got into the operating room, she and another anesthesiologist and a nurse anesthetist came over and they kind of like showed me with their hands and they talked me through how they were going to turn me over once they put me to sleep and how they do that safely and who was gonna hold my head and who was gonna have their hands on my neck and how they were gonna use this thing that floats you. And it gave me the peace of mind I needed in order to be able to take a deep breath of that gas in the mask.

 

Linda Bluestein, MD (01:14:23.875)

Mm-hmm.

 

Linda Bluestein, MD (01:14:37.794)

Hahaha

 

Kate Colbert (01:14:38.706)

and to be able to say, okay, I think I'm in good hands. But it was important to me all the way up until that last moment to feel like I had communicated clearly that I understood, that they understood how to take good care of me and not harm me. And that I knew that I was in good hands and I don't know that I would. I've had phenomenal outcomes. I mean, you were talking about hiking. I mean, I hiked a mountain in Arizona on the 10 week mark after my tethered cord surgery. I went into tethered cord surgery.

 

Linda Bluestein, MD (01:14:41.746)

Mm-hmm.

 

Kate Colbert (01:15:06.59)

within Ataxic gait, so couldn't walk across a room without holding on to the furniture on the walls and climbed a mountain in high heat 10 weeks later. I am quite positive I would not have had the kind of results that I did had we not been so careful and had you not been on my team.

 

Linda Bluestein, MD (01:15:23.97)

Thank you.

 

Kate Colbert (01:15:24.982)

Thank you.

 

Linda Bluestein, MD (01:15:27.138)

Well, I cannot believe how much we've covered in this conversation, and I'm so excited because I know we're gonna have another conversation together where we're gonna dive a little bit deeper into these communication skills that you are so, so good at having the right balance. It's really hard for people to advocate for themselves in an effective way. So for people listening to this conversation and thinking,

 

Kate Colbert (01:15:40.692)

Yeah.

 

Linda Bluestein, MD (01:15:54.426)

Oh man, I want to hear more about that. There will be more, so stay tuned. So stay tuned. Well, thank you so much. This has been a fun conversation. Such an honor to get to chat with you. And I appreciate you taking the guest co-host seat today. And next time, you get to take the guest seat.

 

Kate Colbert (01:15:57.903)

There'll be more. I'll be back, I promise.

 

Kate Colbert (01:16:15.486)

That was my pleasure. Thank you so much.

 

Linda Bluestein, MD (01:16:17.418)

Yes, absolutely. And thank you all for listening to the Bendy Bodies podcast. If you found this helpful, follow the Bendy Bodies podcast. To avoid missing future episodes. Please leave a review and share the podcast so more people know about Bendy Bodies and Joint Hypermobility screenshot this episode. Tagging us in your story so we can connect. Our website is www.bendybodies.org and follow us on Instagram @bendybodies. We love seeing your posts and stories, so please tag using Hashtag Bendybuddy. This information is not intended to diagnose, treat, cure or prevent any disease. The information shared is for educational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please refer to your local qualified health practitioner for any medical concerns. We'll catch you next time on The Bendy Bodies podcast.