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Advocacy, Podcast

Advocacy, Humor and Purpose: Seth’s Spondyloarthritis Story

4 months ago
57 min read
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Summary:

On this episode of the Arthritis Life Podcast, host Cheryl interviews Seth Ginsburg, co-founder of Creaky Joints and Global Healthy Living Foundation. Seth shares how being diagnosed with spondyloarthritis led him to found the nonprofit organization CreakyJoints as a college student.

Seth discusses the challenges and lessons learned from his condition, emphasizing the importance of self-advocacy and humor as coping mechanisms. He also reflects on the 25-year journey of Creaky Joints, which began as a simple idea to connect arthritis sufferers and has grown into a significant patient advocacy and support organization.

Cheryl and Seth also discuss the importance of patient voices in research and healthcare policy, the role of advocacy in improving healthcare systems, and the power of community and proper information. This episode highlights the power of advocacy, sharing our stories and remembering you are not alone in your arthritis journey!

Episode at a glance:

  • Seth’s Diagnosis Journey: Seth shares his early diagnosis at age 13 with Spondyloarthropathy and how it shaped his perspective.
  • Creaky Joints and Global Healthy Living Foundation Origins: How a simple idea to connect arthritis patients evolved into a major advocacy and support organization over 25 years.
  • Coping Strategies: Cheryl and Seth bond over the value of self-advocacy, humor, and mindset in managing chronic illness.
  • Patient Empowerment and Advocacy: Why patient voices matter in research, healthcare systems, and policy-making.
  • The Power of Community: Cheryl and Seth discuss how connection and reliable information support well-being.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Seth Ginsberg

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

[00:00:05] Cheryl Crow: I am so excited to be talking in real time today with somebody I’ve admired for many years. His name is Seth Ginsberg. Come on down. Sorry, in my head, I’m on Wheel of Fortune, the Price is Right. Come on down, Seth.

So welcome to the Arthritis Life Podcast. Can you let the listeners know: where do you live and what is your relationship to arthritis?

[00:00:27] Seth Ginsberg: Yeah. Cool. So first of all, hey Cheryl, thanks for having me on. This is a lot of fun and I really appreciate the, the chance to be here. I’m Seth Ginsberg and I am dialing in today from southern Connecticut, just outside of New York City where I live with my family. Originally from the suburbs of New York up in the Hudson Valley in Rockland County.

And what is my relationship to arthritis? That’s a great opener because let’s just say it’s been the longest and most committed relationship in my life. We met when I was 13 and like any relationship, it’s had its good days and it’s bad flare ups.

So, I would say arthritis has been my, one of my greatest obstacles, but also one of my greatest teachers.

And it’s taught me how to have empathy. It’s taught me patience. It’s taught me how to creatively explain why I am sitting down sometimes during a standing ovation.

[00:01:24] Cheryl Crow: That’s so, yeah. That’s beautiful.

[00:01:26] Seth Ginsberg: I could continue.

[00:01:27] Cheryl Crow: Oh, go. Keep going. Go. ‘

[00:01:28] Seth Ginsberg: ‘Cause I, I mean, I make the point coping is something that I do many times through humor and, trying to see the brighter side of things as I know you do as well.

And that’s why, when I think about these questions and this discussion, I, I, I come to it with a, a lens of positivity and, and hopefully a smile here and there.

[00:01:53] Cheryl Crow: I, I love that and I do think that’s a, it’s a hard line to, to balance where you don’t wanna seem flippant about your condition or as if you’re making fun of it when you add humor.

But humor is a coping mechanism that is used for all, in, in all areas of challenge in life. There’s a reason they call it gallows humor, right? In, in healthcare. So, I love, I, I love connecting over that, like, that’s like a love language, in, in rheumatic disease or chronic illness is like sharing memes with each other, right?

[00:02:27] Seth Ginsberg: Exactly. Exactly.

[00:02:29] Cheryl Crow: Yeah. Yeah. And so you obviously have a very unique perspective over many years with arthritis. Can you tell me a little bit more about your diagnosis, experience?

What were your symptoms, what are the conditions, if you have multiple that you live with and and that diagnosis, quote unquote saga, it usually is.

[00:02:47] Seth Ginsberg: Sure, sure, sure. Cue the music, right? Yeah. So I, well, I was diagnosed with Spondyloarthropathy when I was 13 by the legendary Tom Lehman, Dr. Lehman at the hospital for special surgery in New York.

And he was a godsend both to me and my family and, and really to thousands of families of, of younger adults, kids with arthritis. And he like literally wrote the book on it all. The book is called, It’s Not Just Growing Pains by Dr. Lehman and has been a pioneer, was a pioneer. He is retired now, but a pioneer in kind of bringing to light the fact that hundreds of thousands of, of young adults, kids, people under 18, develop symptoms of arthritis and different musculoskeletal conditions affect them as well.

So, for me personally, at first, it all started with just feeling confused. Was I just like a teenager hating gym? But it turns out that it was my joints that were in rebellion. And when you’re told you have a condition that’s got six syllables at the age of 13, it’s like a real trip.

And for me it was, a series of different feelings and thoughts, I know a lot of people go through of being confused and feeling isolated and just, a lot of that teenage melodrama, let’s call it. But Dr. Lehman had it figured out, and this was somebody who opened my eyes to, to dealing with it and managing it through the right medicine.

Sometimes the trial and error, sometimes the, ups and downs of those and a good lifestyle, a good way of thinking about it and the perspective. And I’ve carried that with me ever since.

[00:04:28] Cheryl Crow: Wow. I mean it’s, we do on this podcast, we, me, here’s a lot of stories that were of difficult times getting a diagnosis.

So I’m, it, it is always wonderful to hear about kind of getting a home run rheumatologist on your first try it sounds like, and I’m definitely going to link to that book, it’s not just growing pains in, in the show notes.

And so I, you, you alluded to the fact that it, it, it is trial and error- finding the right treatment plan. And even, even when I say those words, the right treatment plan, for me, it’s been ephemeral because what’s right for a, a few years may suddenly not be right anymore as my body has adapted or adjusted or somehow mysteriously changed so that the medicine that worked for six years now suddenly doesn’t work.

What have been in, in -that’s my journey.

[00:05:17] Seth Ginsberg: Well, yeah and you know there’s a word for that sometimes. It’s called immunogenicity.

[00:05:20] Cheryl Crow: Yeah. I’m like, yeah, my immune system is so adaptable. Woo hoo.

[00:05:24] Seth Ginsberg: Well, we are a living things.

[00:05:26] Cheryl Crow: Yeah, that’s true. Yeah. It’s like it’s a double-edged sword. You want it to be adaptable when it’s fighting the real bad guys, but not when it’s fighting your own tissues and cells. So in your case, it sounds like your tr treatment journey has also not been like, straightforward in the, in the sense that there’s been ups and downs. Can you share whatever you wanna share in the specifics

[00:05:47] Seth Ginsberg: Yeah.

What’s worked well, what’s not worked well, or highlights and low lights?

Yeah, look for me, I would say realizing self-advocacy is a form of medicine is a highlight for sure ’cause once I started asking better questions, especially as I grew older and, became an adult I started getting better answers.

And that’s, that’s a, that’s a real important highlight to stress when treating these conditions, especially ones with variants. And, things change. And, and like you said, as we’re talking about, no two days are the same or so it seems, or so it feels. So, asking right questions and self-advocacy, being a form of medicine and, and really it is.

And that includes also, the story we tell ourselves and the things I, what I go to bed thinking about and what I tell myself at night, in the morning when I wake up things, those quiet moments right before the world turns on is, is all about the, the approach and the posture and the mindset and, and those things.

And so, the highlights of medicine is finding the rhythm to treat the what ails, right? Because what ails is what we’re trying to deal with. And and it’s, it’s, it is, of course, it’s been a wild and crazy windy journey, just as I know it is for so many other folks.

[00:07:14] Cheryl Crow: Yeah. Yeah.

[00:07:15] Seth Ginsberg: Turning to the low lights.

Yeah. If you wanna go there, I would just, I would, I would say the tests, the challenges that we are faced when dealing with this, I know me personally have have certainly strengthened me in the long run. And the pity, self pity and the feelings of doubt and not all positive thoughts, let’s say, are human and natural and are very much I think normal and part of it as well.

I personally don’t choose to focus on those.

[00:08:00] Cheryl Crow: Yeah. Yeah. I think that that’s, that’s a skill that takes so much practice to get good at. I, there’s this book I talk about a time called The Happiness Trap, how to Stop Struggling and Start Living. It’s a primer on like acceptance and commitment therapy, which is a great, great therapy approach.

And one of the things I do is they talk about you have this radios that are background noise and one of them’s like radio doom and gloom, and one’s like radio, it might get better.

Or radio, that, that

[00:08:29] Seth Ginsberg: it’s like Disney theme songs or something.

[00:08:31] Cheryl Crow: Yeah, yeah. And, and the goal is not to, you’re never gonna be able to turn the volume down completely on radio doom and gloom, right? Because it’s there to protect you. And so if we set ourselves up to say, you should just stop listening to those or make those voices go away, they’re never gonna go away.

But if you say, oh, can I, can I just practice shifting my attention, like filter out the radio doom and gloom and shift my focus to the realistic yet more hopeful messages.

Did you learn, I’m just curious, you don’t have to share all the details, but it sounds like, you’ve really worked on your mindset and mental outlook to cope with the, these ups and downs. Were there any resources that were helpful for you? Like, like therapy or books?

Did you read the Happiness trap too?? That would be funny if you were like, I actually read that book.

Not necessarily. Yeah.

[00:09:25] Seth Ginsberg: I think for me, I’m, I’m, I’m blessed. I, I, I feel so grateful and I’m, my blessings are in the form of my family and those who surround me by, since birth almost, I guess technically, but and then beyond and, I, I don’t want to steer us into religion, but you,

[00:09:46] Cheryl Crow: whatever has helped on your, your journey, that’s your story.

[00:09:49] Seth Ginsberg: I, I think there’s importance and rituals and I believe in looking forward to things knowing, God willing, there’s another year, another time to celebrate, those, those things. Like we’re coming up on a holiday. I don’t want to date us when, we record versus this is released.

But, let’s just say there’s a ritual and it’s not nothing to do with religion. It’s about, enjoying a hot dog for the ceremonial start of summertime that will be that will be happening hopefully here in the next few days. And so, giving a a cadence and something to look forward to that has been a a definite thing for me that I’ve been focused on, especially as I get older.

[00:10:35] Cheryl Crow: I I love that. I think that sometimes just try to, my life feels complicated sometimes, and I’m like, drill down, like to the most basics, what do I need?

[00:10:42] Seth Ginsberg: But yeah, so. What, where, where else can we go? Let’s, yeah. Oh, let’s, let’s get into other things.

[00:10:48] Cheryl Crow: Well, I wanna, yeah, I wanna learn ’cause one of the, speaking of rituals and celebrations, I do wanna date us by saying that this year that we’re recording this is the the 25 year anniversary of Creaky Joints and Global Health and Living Foundation.

And so creaky joints, if you don’t, or can you let audience know what is creaky joints other than an amazing name that is immediately, it’s like immediately it connotes what it feels like to have one of these conditions more so than in my case, rheumatoid arthritis.

I’m like, no creaky joints. I have creaky joints. Can you let us know what that is and how, what was your role in getting this started?

[00:11:31] Seth Ginsberg: Yeah, sure, sure. All right. So creaky joints began because I was a teenager searching for someone else out there, basically, who understood this weird, painful, invisible, random thing I was living with.

So this was in the nineties, the 1990s, to put us in a a century. And I felt, at this time that if I were alone, maybe others felt that that way too. And so back then the internet was like barely a thing. And we weren’t influencers. We were like literally strugglers with stories that came with dialup connections basically.

And the idea was simple. We wanted to build a place where people like me and others, eventually people nothing like me could find community and answers and a, and a place basically just to exhale. And so I was a first year student. I was a freshman at Babson College up in the Boston suburbs and it was the middle of the night.

I emailed my former internship boss from the high school summer prior a guy called Lou Tharp. And in one sentence I said, there’s gotta be a way we could bring people together in a positive environment and he wrote back just a few hours later when he woke up I’d like to become a social entrepreneur.

How about we do this together? And then later on that afternoon, creaky Joints was a website. And today, Lou and I, we’ve still been doing this together. All of this time we’re, well, creaky joints, I should say. And, and what became the Global Healthy Living Foundation, which is kind of the umbrella nonprofit that, that grownup entity we created for the policy the research, the advocacy arm but all with the same soul basically, which was patient first and patient run, and still a little creaky.

But, we wanted this to be something that would be enduring and it’s the result of what happens when a baby boomer, Lou, and a millennial, myself, I. I have been working together in partnership for now a quarter century. And I’m really proud because together we’ve been able to, to make a real difference and we’ve, we’ve brought together lots and lots of people and we have tons of work we still need to do.

We’re I always joke, just getting started and I, I, I’m, I’m very blessed both for the partnership and opportunity I’ve had, of course in Lou’s mentorship and his partnership and, and leadership of the organization, but also in granting me the, the kid with arthritis at the time the ability to go out and to , to make a difference and to bring forward these topics and these voices and these issues on behalf of the organization, on behalf of patients. And and it’s been incredible.

So, yeah, so that’s, that’s a little bit like of the origin story. We, we are like a married couple. We finish each other’s sentences and, and each other’s thoughts and such.

But it’s, it’s nice in that we, we compliment each other and we have, a great team that we get to work with and we all get ,. As a group, make such meaningful impact across all these random directions too. ’cause we learned very early in, in the earliest days at Creaky Joints when we had like our, one of the first intake, kind of like membership, query kind of things.

What other conditions or what’s your diagnosis or what do you have, what, what else do you have? And then the list just started growing and, and we realized that no one just has arthritis. And, and I think back, there’s a, a doctor called Pete Singleton, Peter Singleton, a rheumatologist from Stanford, California, who passed away a number of years ago, but had the chance to attend so many of his lectures on, on the road.

And, and he’d always do this thing, Dr. Singleton, when he’d say, know when arthritis comes knocking, it never comes alone. And that was an homage to all of the realities we live with, with secondary, tertiary four diagnoses, whatever. Because things tend to get hectic with chronic diseases and so that’s, that’s really where GHLF and, and Global Healthy Living Foundation comes in, where, creaky joints maintains its position and its role and its, corner of the internet basically with tens of thousands of pages of information and content and perspectives and advice and all those good things and so many others I’m forgetting.

But we, we realize that there’s, there’s a lot out there and there are a lot of conditions that, that definitely need, that need our help and that need a, a warm, carrying arm around them to support them through this, this life.

And and that’s what GHLF has evolved into, especially since COVID look come, 2020 February, 2020, we, we, we kinda, we called that one the earliest and the loudest and said, this is a problem for everyone who have medical vulnerabilities, immune compromised, whatever. This is not just an elderly thing, which was how it was originally kind of positioned by public health authorities. Yeah. And, and by shining that, that kind of bat signal in the air, we really.

That was when, truly, I believe the organization just evolved into what it’s been on the trajectory today, which is, chronic disease, patient, community building and strengthening and amplifying and supporting for people and their families all around the world. It’s wild.

[00:17:24] Cheryl Crow: I know. I love it.

And I have to say, as a patient, unfortunately I didn’t learn about creaky joints right away. I think probably because I went into pretty quick medicated remission after my diagnosis, and I just thought that was gonna be the rest of my life. So I was like, I got this figured out. I don’t need any resources.

I’m just gonna take this medicine and I’m gonna be normal, quote unquote, for the rest of my life, I just need to take the medicine. And then I started really having to research and learn about my condition, rheumatoid arthritis, when I had my first flare up on medications and was like, wait, what?

What is happening? And I think, like so many patients, I wanted to hear first person stories. I wanted to hear, yes, it’s anecdotal evidence, but I also wanted to have an emotional connection with another human being who had gone through what I’ve gone through.

And now, 25 years after, when I run support groups for people with rheumatoid arthritis, rheumatic diseases similar to that like psoriatic arthritis and spondyloarthritis, they, they often will tell me that, they really found solace in articles on that they found on creaky joints.

You have a lot more than the personal stories, so I’m just gonna highlight them for a second. If you go under on the Creaky Joints website, under, there’s parts under support and there’s also education, but there’s like specific, there’s a whole section where people have written blog posts about what it’s like to have depression and live with their condition.

What it’s like to, start an exercise program or whatever people are concerned about what being, I know Eileen has written about being a single mom, like all these personal stories and touchpoint that help people feel less alone is, is such a great service.

[00:19:03] Seth Ginsberg: Yeah. I, I appreciate that I got this this random connection the other day on LinkedIn.

Somebody reached out, connected, and they had this cool scientific job. So, I wrote Cool job and this woman wrote back, it turns out, lo and behold has arthritis diagnosed with RA four years ago. And she, she wrote Creaky Joints is one of the first resources that helped me find answers without falling into a rabbit hole.

And I thought that was just a great. That was a great way of putting it. ’cause, ’cause there’s a, there’s a lot of rabbit holes on the internet, I gotta say. And we’ve worked so hard, so diligently day and bloody night, seven days a week, 52 weeks a year, 25, 26 years coming up in October now that it has not stopped to be what it needs to be, which is like beacons out there, beacons on YouTube, beacons on Instagram beacons, on TikTok, whatever, beacons on Google, which is what, creaky joints allows us to do.

A lot of people come to us from Google, which is really cool. A whole lot of people,

[00:20:12] Cheryl Crow: I’ve noticed that when I’ll, I’ll Google things sometimes about, medications. There’s a, when I was diagnosed there was only three biologics. Now there’s, yeah, over 10 plus the biosimilars for rheumatoid arthritis.

And yeah, it’s great to see, creaky joints come up in those search results ’cause I know that you, you vet the information, make sure that it’s high quality, that it’s not gonna have a bunch of misinformation there. ’cause that is the downside of personal anecdotes. If there isn’t a medical curation over them people, they don’t know what they don’t know. So sometimes well look, yeah,

[00:20:43] Seth Ginsberg: Yeah. I want to caution people listening to this who are out there, looking for answers of, of, of course we all are in many ways, but you gotta know when, when someone shares their story, they’re a, they’re an “N of one,” as they say in the research world.

They’re just one example, and the true reality is we live with different genes, genetic backgrounds. We live with all kinds of different environmental factors and, and, and the whole lot. And basically just because this person has this disease and is taking this drug and for example, had this problem with it does not necessarily translate to your experience because you don’t also have that other disease that she might have or taking that other medicine that she’s taking and so forth where that’s her situation based on a lot of factors.

And yes, there are things we can glean and, and learn from each other’s experiences, but we have to be very careful to not immediately say, oh, it happened to her, therefore it’s gonna happen to me because it absolutely doesn’t work that way.

[00:22:02] Cheryl Crow: I will join you on this soapbox all day long. It is such a crucial point, and it’s how I, I joke that I became an accidental methotrexate influencer, and I’m saying that completely tongue in cheek. But what I mean is I had absolutely no clue that methotrexate for rheumatoid arthritis – which is one of the most well researched, cheapest, effective, first line of defense for rheumatoid arthritis – it had a bad reputation amongst patients ’cause there are real side effects that some people experience.

But what people forget to, to think about is the people who share about their side effects are, are more vocal, kind of like restaurant reviews, right? Where there’s, people are really vocal about the very best and the very worst experiences. People like me in the middle who are just having an average, like it’s working for me and there isn’t really a, a side effect, i’m not like shouting that from the rooftops ’cause it’s just boring to me.

So I first started sharing a methotrexate injection just as like an example of I started shared a DIY video or, how I gave myself my methotrexate injection. And I got so many comments and so much engagement. People are like, wait, isn’t that like the worst medication ever?

Doesn’t it make everyone throw up? Doesn’t it make everyone have fatigue? And I’m like, it is a potential side effect and it’s, I’m not saying that your experience invalid if you have that, but remember that a, a side effect is always potential. It’s not a guarantee. And so that’s just one piece of like health literacy that is crucial to remember.

And it, especially when you look at not only medications but the, natural methods or integrative strategies. So people tend to be super heavy on anecdotal evidence. So when I share my methotrexate, I’ll link to the research. X amount of people do experience nausea, fatigue the day after.

There are great resources for that on Creaky joint’s website. And so, the only way to know whether you’re gonna be in that, 30% is going to be to try it and. It, you know what I’m saying? So anyway, I know, you know what I’m saying?

[00:23:56] Seth Ginsberg: Yeah, yeah, yeah, yeah. Definitely.

[00:23:58] Cheryl Crow: That, that is one of the real flip sides of personal story sharing is being able to take in someone’s anecdotal evidence without overgeneralizing from it.

[00:24:09] Seth Ginsberg: Correct.

[00:24:09] Cheryl Crow: To say that because something either worked or didn’t work for one person, it will or won’t work for another. One of the aspects that I think many patients forget to think about is the length of time from first symptom to diagnosis is a huge indicator of your likelihood of reaching in remission.

So if you were, wait, if you had many years of symptoms and you weren’t diagnosed, your less likely to have remission and, and, and your age at diagnosis, confounding. There’s so many other things that are actually charts that doctors have to kind of give you a personalized idea of what your most likely chance of remission is.

But it’s just so tempting when you see someone else, oh, she tried this and she’s in remission. If I try that, I’ll go into remission,

right. So sorry. Right. That’s a lot.

[00:24:52] Seth Ginsberg: No, it’s, it’s true. It’s true. But in saying that I think it is really important everyone know you’re not alone.

There is somebody going through something extremely similar. They may be different in their genetics and their other conditions, et et cetera, but at the same pace they’re, they’re feeling pretty much the same way you are in some respects and there’s, there’s strength in that.

There’s there’s the ability to get through it. Knowing that, and I think for folks who get into this situation, look, no one wakes up, we’ve said it before, and says, today I would like to get arthritis. This is gonna be my day, i’m gonna go get it. These things just hit you and, and almost always when you least expect it.

And so, and, and, and that’s, that doesn’t stop at arthritis. We know that. So, so yeah, so, so we take each day as it comes, but knowing that we have this shared strength in our, our, our been there folks, our brothers and sisters who have been there.

[00:26:03] Cheryl Crow: Yeah, it’s huge. And I highlighted the personal, the stories and the blogs on Creaky Joints, but the other thing I think is so, so powerful and it hearkens back to your initial reflections on your diagnosis is advocacy.

So learning, you said earlier self-advocacy is a form of medicine and you had to learn how to ask better questions. So now through the advocacy on Creaky Joints, you also are helping other people become better advocates for themselves. Can you tell me a little bit more about some of the advocacy efforts?

I wanna make sure we highlight them to the audience. A lot of people dunno, a lot of people don’t know a lot of, there’s just so much online. People don’t always come across advocacy efforts.

[00:26:45] Seth Ginsberg: Sure, sure. Many more people don’t know than do know. So I, I, I approach my life recognizing that. And, and educating and making folks aware.

So we have all kinds of advocacy opportunities because again, raising one’s voice and bringing it forward and strengthening your voice with decision makers, which is a lot of what advocacy is. And there have been policies and rules and regulations and all kinds of obstacles that. Get in the way of people getting what they need.

And my God, we need so much in our healthcare system and it is so hell bent on not getting it to us. I say that we, we have to advocate. That’s what advocacy is. So advocacy is, is changing things for the better. Advocacy is making a dent in the system so that it is, improved things have been changed for the better.

And so that kind of falls to so many different domains. And the first is awareness and just even making a dent in how the world sees people living with arthritis. Like that’s, that’s advocacy and bringing patients to the table and making it impossible to ignore patients in a good way that, that’s also advocacy.

Influencing how trials are designed, how treatments get approved, how people talk about pain or, or quantify it with their different measures. Bringing, humor and truth into spaces that you know are otherwise pretty sterile and are, are almost always silent for patients.

[00:28:31] Cheryl Crow: And, and I wanted to, I wanna make sure to cl to give a, a little bit more specifics when you say br bringing patients to the table ’cause this is so important. So you’re saying, in, in the olden days right before you and I were diagnosed or shortly after you and I were diagnosed it was like patients and health providers are in two different, complete different silos. Right? And drug manufacturers and drug developers.

Maybe, it seemed to me, now lemme know if I’m characterizing this wrong, but that they wouldn’t even ask patients for input. They just decided we’re gonna make this treatment and we’re gonna decide the metrics on how it’s gonna be evaluated. And now fast forward to the, to 2025, probably partly as a result of your advocacy patients are part considered partners in research in many ways.

And what does that look like?

[00:29:19] Seth Ginsberg: Yeah, I mean, to put it this way, clinical trials have historically, they’re built around endpoints, which is they build this whole experiment in the real world. That’s what a clinical trial is. And it’s all about the endpoint. Like what are we gonna measure to exactly determine what just happened?

And so when you build things around endpoints, you get what, you call a clinical trial these days. And what we’re suggesting and what we’re trying to do and what we’re working with a number of different folks on is building a clinical trial around the patient and pulling out from that the end points that are necessary and, and important to show two things.

Is it safe and did it work? And if you build clinical trials around the patient and not just around the endpoints, you, you, you are well, well on your way,

and way better off.

[00:30:18] Cheryl Crow: What would be an example of an endpoint that wasn’t really designed around the patient?

[00:30:23] Seth Ginsberg: Well, look, you can, you can say and, and this happens in research a lot, and I, and I can, I, I see all sides of it, but what people will do, and, and historically, anyone that’s been through an owner’s trial will know that there are different measures and different things that will, that could be collected more efficiently, for example instead of making a patient go to an office, to, to, to log something.

There are there are lots of examples of over the years, the ways in which, trials were designed and are, have been and, and continued to be designed around, the surveillance of the patients in ways that is it all about the, the researcher and the clinician side, but doesn’t take into account, the number of overnight stays required?

That also means a partner or spouse or family member is there and needs to take off and things like that, that, that become like true obstacles to getting this thing done and then the patient has to drop out, or then there’s, they’re not able to do it and it’s, it becomes almost a self-fulfilling prophecy in, in terms of what winds up happening.

But I think for us it’s, it’s about bringing the patient forward, sharing their experiences with the disease, with life, with their experience in the system, and allowing the researchers to incorporate that and to, to bring that into the fold and doing structured ways as scientists tend to do.

[00:32:02] Cheryl Crow: Well, the, the example I, two examples I’d heard in the past, I’m not sure if it was, I apologize, I can’t remember if it was hearing about it through creaky joints or somewhere else, but was one a trial where, or many trials for rheumatoid arthritis where the only outcome they looked at was like tender joint count and self-reported pain.

And they did not look at any of the systemic symptoms like fatigue, right? Or loss of stamina or cognitive dysfunction. All these other systemic things that are really big outcomes for quality of life that patients want to get improved through their treatments. And if you’re only zoning in on the most measurable thing, which is always gonna be swollen or tender joints, like in the case of rheumatoid arthritis, that’s the easiest thing, or blood, blood work is the easiest thing to measure. You’re missing out on the things that actually impact the patient. Is that sounding familiar?

[00:32:59] Seth Ginsberg: Totally.

[00:32:59] Cheryl Crow: Or yeah, you’re like, yes, I live this. And the second one was something about a medication for rheumatoid arthritis that was like notoriously really hard to administer in the syringe.

Like they focus so much on what was in the vial that they forgot to actually design like an ergonomic- it’s like that I Ironic, humorous little thing where it’s like my hands are in too much pain to open the container of the pain meds, which will make my hands be in less pain.

Like I can’t, those kind of things that seems so basic to a patient. If a patient isn’t at the table, they are totally overlooked in, in what I’ve heard from researchers. Well intentioned as they are.

[00:33:35] Seth Ginsberg: Totally. And that’s the thing, I think it’s really important, at least in our world, definitely in my life to approach things, understanding as much as you can about the other side and having, again, that empathy and, and recognizing there is no researcher out there who wakes up to say, I want to make the lives of people miserable. It is the complete opposite.

[00:33:58] Cheryl Crow: They’re like the nicest people in the world.

[00:34:00] Seth Ginsberg: Exactly. And, and these are incredible folks and the nature of research is confinement into a box and a protocol as they say, or a structure. So, coming from a place of understanding, right. We, we extend our, our hand across the table or alongside the table, at the table to of patients to, to help make the, the process better.

And it’s been cool. We’ve been doing a, a, a number of different things in that area and that’s just one area, of advocacy. And then of course, the, the mud wrestling that is the state policies. I don’t even know what else to call it.

[00:34:40] Cheryl Crow: Oh, yikes. That’s accurate.

[00:34:41] Seth Ginsberg: And and we’ve got this inflation reduction act that has been putting, throwing a spanner in the works, as they say in Australia. But there have been other really urgent and, and very unfortunate developments, of course, in the vaccine space where vaccines are literally under attack and under siege.

So patients have needed to come forward and, and share their informed and they’re rational and they’re evidence-based and their personal experiences and relationships with their health and public health in general. And I’m not talking about any one vaccine in particular right now, like it was with, COVID back, back in the day.

[00:35:31] Cheryl Crow: Mm-hmm. Mm-hmm.

[00:35:32] Seth Ginsberg: What feels like back in the day, but it was yesterday and

[00:35:35] Cheryl Crow: Never thought I would yearn for the simpler time of COVID.

[00:35:41] Seth Ginsberg: There are parts I, I, I do miss, I will admit. Yeah. And, and unlimited diet of banana bread.

[00:35:51] Cheryl Crow: Yeah. More time with at home. But, but no, I I’m glad you brought up the 50 or the, the state advocacy. Yeah. Because it’s, I’ll just say really quickly as somebody who, like I was very, I’m very outspoken and will word, vomit my story to anyone who will listen. But even I was nervous to get involved in formal legislative advocacy at my state capitol.

And that’s because I have two different parts of my personality. One is a really deep like people pleaser and wants everyone to like me and, and doesn’t want anyone to be upset ever and want everyone to just agree with me.

And then that part of me that’s I want to fight for what’s right and I want to get better treatment for all humans and humanity, whatever.

So, but I’m like, I don’t, I feel nervous to go and meet with my state representatives and advocate for something. At first, this was like 2010 the first time I ever did it.

So I was like, oh, they’re gonna think I’m just some random person who doesn’t know anything. But really this is my little pitch to get involved in, in legislative advocacy, whether it’s through, creaky joints, global healthy living, whether it’s through another organization, there’s so many great ones that are specific to, either rheumatology or to your disease that you, these the nonprofits employ experts in this area, and they have talking points and campaigns like Fail First hurts and creaky joints that are like, you don’t have to come up with everything on your own. They’ll give you those talking points and you just share. What you can do is share your personal story with your legislative representative who works for you.

Like it’s the power is actually in your hands. That’s what I didn’t realize the first time I did it. And they’ll coach you through it. The usually I’ve, in my experience, there’ll be somebody, whether it’s a volunteer or staff at the nonprofit will help train you and Hey, here’s the, here’s the bullet points.

Here’s how to talk to a legislator and it’s a really empowering experience when you’ve had, fail first hurts. It’s about, saying Hey, I shouldn’t have to fail these medicines and, and have my insurance company dictate my care versus my doctor, kind of thing. So, sharing your personal story in a way that feels like I’m not just a victim of this system, I can actually work to change it.

[00:37:48] Seth Ginsberg: A hundred percent and everybody’s voice has power and, a lot of what we do is help guide that voice, both in tone and words and posture and direction so that it can have maximum impact.

And we’ve been around the block. We know what’s up. We think about this all day, every day. We have a 50 state network, as you mentioned, so it’s, it’s 55 0 state network.org, and it’s an opportunity to dial in to your state specifically across a, a number of conditions. We do onboarding. We have all kinds of really nifty resources, of course, bring, bring you up to speed, teach you things that you didn’t know about civics and, and all that good stuff. But also then involve you and in, include you in updates where we can, we can share what’s going on both in your state and, and nationally.

We do this with newsletters. We do this with an incredible podcast. We’ll do the crossover here with the health advocates, which is Stephen Newmarks baby. He’s been driving just an incredible voice of kind of WhatsApp with policy and advocacy and, and regulations and healthcare in general.

So, a real voice of reason in that regard. And that’s what our 50 state network is. And we, we’ve got thousands of people in it. We’ve got folks in every state capitol, which is really awesome. And we’re active in it seems like, and feels like six states at a time. It’s always, it’s always six. Looking at the summer getting active on all kinds of issues.

And let’s see, Florida, Arizona, Alabama, texas,

[00:39:37] Cheryl Crow: You, and by the way, you not only have the Health Advocates Podcast, you actually have the creaky Joints Podcast Network with, again, I’m a real sucker for great titles for podcasts, so I love the Talking Head Pain.

[00:39:50] Seth Ginsberg: Yep. Yeah. By all

[00:39:51] Cheryl Crow: of our podcasts. Patient Prep Rheum, R-H-E-U-M, psoriatic Arthritis Club.

Patiently connecting Dungeons and diagnoses like the gout show.

[00:40:02] Seth Ginsberg: That’s a good one. Dungeons and Diagnoses is a really interesting, I love that. We, yeah, we’ve got, we’ve got close to 30 different shows in the network, different series.

[00:40:10] Cheryl Crow: Amazing.

[00:40:11] Seth Ginsberg: It’s incredible.

[00:40:12] Cheryl Crow: I like the g the gout show. I will propose, I actually said this to Judge, judge John Hodgman, who’s a comedian who had had a period of gout.

I said, you should come on my podcast and we can do an episode called “Gabbin’ ‘Bout Gout!”

[00:40:24] Seth Ginsberg: There you go. There you go.

[00:40:26] Cheryl Crow: Anyway, not to get too off track, but I think that’s that’s a great example of just meeting people where they’re at which is people are on the podcast. So I, I love promoting other podcasts, doing, doing great work.

[00:40:38] Seth Ginsberg: Great. Yeah. No, cool. I appreciate it. Yeah, no, we like to inform people a lot of the health, health advocates in another show called Healthcare Matters, which is policy and health economics, access discussion. Those are regular, those are weekly and monthly. And then, we’ll, we’ll do a, a program, we’ll, we will, get a grant or do a, a, a a partnership or something and, and do a, a series right As, as you do with these things.

A, a cool and really cool ones, I gotta say, over the years thriving while aching with the folks at Tylenol. It’s cool to partner with, with them. I’m like, talk about fangirling. I mean, I was just like, I was like all over those things.

I was like, oh my God, I gotta tell you, like my life you guys have really, you’ve stepped up over the years to support me getting through my life.

[00:41:23] Cheryl Crow: That’s awesome

[00:41:24] Seth Ginsberg: as a medicine. But but yeah, anyway, so podcasting and also, YouTube, it’s cool. YouTube’s the second largest search engine in the world.

[00:41:32] Cheryl Crow: Yeah.

[00:41:33] Seth Ginsberg: And, we’ve got a a, a health badge from YouTube Health, which is, is wonderful.

[00:41:40] Cheryl Crow: That’s, I want one. Okay. Sorry.

[00:41:41] Seth Ginsberg: So there’s a whole, there’s a whole vetting, the, I’ll, I’ll send you the link. ’cause they’ll, they have a whole process, but it’s, it’s early days in that program, so, so there’s that.

But, but yeah, look, meeting people where they’re at is, is a common phrase, even though I don’t know if it’s the right grammar. ’cause it, it does end on a preposition

[00:41:59] Cheryl Crow: Yes, it is a permissible, Merriam Webster agrees it is permissible to end descendants with a preposition. Now. Yeah. Now. Yeah. And one of those rules that we were taught when we were younger.

Well, I’m, I actually didn’t know. Sorry, way. Going back to your initial origin story, ’cause I am fascinated about this. I didn’t know that you and Lou had been working together since day one. That is just so, and I love that you had an idea and executed it so quickly. That is kind of -analysis paralysis gets a lot of people gets a lot of people.

So in this case, you were like, I know someone needs to do this. That’s kind of how I felt when I started my support program. I was like, someone needs to do this, someone needs to do this. And I was like, I guess I’m someone I’m gonna do this, but

[00:42:41] Seth Ginsberg: Totally.

[00:42:42] Cheryl Crow: Yeah. But to your story and

[00:42:43] Seth Ginsberg: Lou’s a do it guy. And yeah. It takes his health super seriously, cares deeply about others, and is, is super, super with it. He’s put together, he’s got an incredible background himself, of course, his passion for swimming. He’s been a, a swim coach. He’s the, he was, I should say the, the triathlon coach at the West Point Military Academy at one point.

[00:43:08] Cheryl Crow: Oh. Wow. That’s gotta be intense.

[00:43:10] Seth Ginsberg: Yep. A appointed by by Obama as well as Biden for in their administrations to serve on an Army Advisory Education Committee for the department of Defense and written books, all kinds of interesting books, including his time as that. He was the first out gay coach at West Point and and took a team.

I, he just, he did, he just did great things coaching this team and, and then wrote a book about it, so, oh my,

[00:43:38] Cheryl Crow: okay. I’m gonna link to that. Oh my gosh. So amazing.

[00:43:40] Seth Ginsberg: Overachievers Diary.

[00:43:42] Cheryl Crow: I love that. Well, okay. I have one more question before we go to the Rapid Fire, and it’s a, a question I didn’t warn you about, it’s just occurred to me.

So let me know if you need time to think about a response, but I love the idea of imagining you back at that moment when, when you and Lou started that website. If you could go back, the, you now could go back to that person and say, tell them something about what this is going to become, like what would you want to tell that person?

And what would you, does that make sense? I’m trying to think.

[00:44:18] Seth Ginsberg: Yeah, sure. I think it, the, the message is, it’s gonna be all that you’re dreaming of and, and more, and just keep doing it and doing it for the right reasons. And, and, and it pays off. It pays off. And, and it’s cool.

I do enjoy, I’m fueled by the notes and the comments and the, the love that we get from every corner of the earth. And it’s wild. It’s just absolutely wild. To get a note from a, someone you know in Japan, in, in Japanese about, how touched they were by a, by a podcast they listen to in Japanese.

[00:45:04] Cheryl Crow: Yeah.

[00:45:04] Seth Ginsberg: Versus I, I couldn’t

[00:45:06] Cheryl Crow: We couldn’t have imagined that right When, in the nineties, when the worldwide web was becoming this, phenomenon.

It’s like you still just couldn’t, there’s, I don’t know how you could have imagined how connected everyone is now,

[00:45:19] Seth Ginsberg: but I would caution myself, I would say the internet is gonna be a darker.

[00:45:28] Cheryl Crow: Yeah.

[00:45:29] Seth Ginsberg: Yuckier place than you can ever imagine.

[00:45:33] Cheryl Crow: Mm.

[00:45:34] Seth Ginsberg: In the early days, oh, the olden days as you correctly refer to them it’s what I call it at home,

[00:45:40] Cheryl Crow: yeah, me too.

[00:45:41] Seth Ginsberg: The other day, telling my kids, in the olden days we had a, a phone with a cord. Yeah.

[00:45:45] Cheryl Crow: I know. My, my son was like, what was it, what was it like in the 19 hundreds?

[00:45:50] Seth Ginsberg: So, in the olden days, I think there were, what was the internet? It was like, it had a little smut and, it had not much more.

Right. And, and it had pirated music. Right. This is what we’re talking about.

[00:46:06] Cheryl Crow: Mm-hmm.

[00:46:07] Seth Ginsberg: And today it is just technologically fueled. With rocket, rocket fuel and it’s, it’s, I’m, I’m just so, it, it does keep me up at night ’cause it’s yucky out there. The internet is super yucky and now with I, with ai, it’s, it’s got such potential, but also, it could take us in really dark, yucky places.

[00:46:30] Cheryl Crow: Yeah.

[00:46:30] Seth Ginsberg: The algorithm is not our friend is, is what I like to say.

[00:46:35] Cheryl Crow: No, very, very good point. And I, I was just looking up my, back to the positive part, just because I wanna share this, this is kind of cool just my, my one podcast as an example. I recently figured out where to click on my analytics to see how many countries have had one download of this podcast.

And it’s 117 countries out of 195 have downloaded an episode in the last year. Just in, I’m sure on creaky joints is probably almost all the countries, if not all of them, yeah, we,

[00:47:09] Seth Ginsberg: we got a lot of countries.

[00:47:11] Cheryl Crow: Yeah. And probably even, or have visited your website. I don’t even know. I need to figure out how to look at that on my website.

I need to get a team. I, that’s my other que- I’ll also ask you about that offline.

[00:47:19] Seth Ginsberg: Sure, sure, sure. But Correct. They’re dialing in, they’re gonna, they’re listening and they’re, they’re tuning in and they’re searching and they’re clicking and they’re, they’re from India. Yeah. And they’re from, South Africa, and they’re from rural Ohio and they’re from, I mean, it just goes on and on.

So that’s the beauty of the internet. Truly, the, the blessing that is the internet and technology is whether you’re 57 miles outside of Anchorage, Alaska or on, east 53rd Street in Manhattan and anywhere in between. Yeah. You can get to the stuff the same.

[00:47:56] Cheryl Crow: Mm-hmm. Mm-hmm.

[00:47:57] Seth Ginsberg: You are, you’re sitting in the same, in the presence, no matter what’s out that window.

What’s on your screen or on your phone can be exactly the same. And I don’t, I, I just don’t think that’s ever been like that in any other time in humanity and now with just such like real vigor and it’s, it’s, it’s working now,

[00:48:17] Cheryl Crow: yeah. Yeah. It’s, it’s a medium. It’s a medium through which amazing, wonderful things can be transmitted.

And it’s a medium through which horrific, horrific things can be transmitted. So, yeah.

[00:48:30] Seth Ginsberg: And what do we mean by that? I just wanna clarify for one second. ’cause when I say stuff like this, I gotta be careful.

[00:48:35] Cheryl Crow: Okay.

[00:48:36] Seth Ginsberg: When I say the algorithm’s not your friend. I mean that by and large we’re working in a world where it’s a consumer, a capitalist society and take Facebook for example, and meta where you, the user, the individual are the product that they are commoditizing with your information based on your behavior.

And they have thousands of people who go to work every day and are very well paid to figure out how to, how to mine that more and how to keep you on their site and how to get you doing things and sharing things that are thus monetized by their business model. And so the algorithm, what we see and what we hear and what we’re served has intent that is not necessarily in our best interest because those things don’t square with the business needs of the platforms that we’re talking about.

So, we’re all like a psychological experiment in real time with the scrolling of social. If you don’t know that, you should know that. We’re all subjected to, people trying to sell us stuff and we’re all sitting ducks in a healthcare system that. It doesn’t turn on every day to make everyone feel better.

Like we, we don’t live in that reality despite everyone’s best effort.

[00:50:19] Cheryl Crow: Mm-hmm.

[00:50:20] Seth Ginsberg: Shout out to the amazing doctors and nurses and nps and shout out to the incredible phlebotomist that somehow hits the vein every time and shout out to, the lady helping us get checked in and appointments for next month or whatever.

Everybody’s working really hard, don’t get me wrong. But the system that they’re working in and the system that we as patients are living in is not built for success. And that’s why we need more advocacy because if you believe we can change it as I do, and, and I know you do as well we have to push for the, those changes and make it happen.

[00:51:00] Cheryl Crow: A a hundred, a hundred percent. And I’m gonna build off one thing you said and then go to a shortened version of the rapid fire, if that’s okay with you. Okay. So as somebody who, like my primary, one of my, what would you call it unique skills or My, one of my, my main mission in arthritis life, capitalizing on what I feel is a unique skill of mine is to be a true, a truly effective patient educator.

And to truly empower patients to give them the skills to, and the information and the mental support, emotional support, to allow them to go forth and navigate daily life in the way that’s gonna improve their quality of life the best possible. That’s a long way to say it. I gotta work my elevator speech.

But point being, I think the thing that concerns me so much about social media, as, and these algorithms as a platform for education, is that those people working on algorithms are not interested in the truth. They’re interested in what people will be most interested in.

So, and this is so apparent to me, right, as an occupational therapist with a master’s degree, I have a good grasp on how to make sense of lifestyle medicine claims. I’ve talked to many researchers, I’ve done tons of research, and I understand, where the research ends and where, where the pockets are.

Lack of research doesn’t mean lack of effectiveness, but we have to go with where is the research saying that things are effective and what I see is the majority of the most popular content on social media is like the least evidence-based.

It’s just such a tragic situation where the most popular content is someone’s tart cherry juice is gonna cure arthritis -millions, i’m talking millions of views on TikTok. And I’m like, I am trying to get like, hundreds of views on the actual correct, information. So, and it’s anyway, that’s just something that I try to remember when I am consuming information and spending time on these, on these platforms.

Is that like you need someone to help you actually get to the accurate evidence-based information. It’s like with journalism, the stuff that’s the most sensational that makes the news is not the average, right? It’s actually the opposite.

It’s the most rare things are going to make the news because they’re rare. Like they don’t say, well, majority of people drove to work today and didn’t get in a car accident again. Same thing. Majority of people who take medication for rheumatoid arthritis do really well. But the thing that people wanna read about is the worst, worst, worst, worst case scenario.

Anyways. I always tell research and evidence people like, you gotta fight fire with fire. People want anecdotes. So you gotta couple the evidence-based information with an anecdote ’cause you’re not going to get people with charts and graphs normally, right?

Sorry, little workshop here on that, but okay. But rapid fire to you. I would love to hear what are some of your best words of wisdom or a message you’d like to share with somebody who’s newly diagnosed with inflammatory arthritis?

[00:53:58] Seth Ginsberg: Good. You’re not crazy, you’re not lazy, and you’re definitely not alone and your pain is real and your life is still yours.

[00:54:14] Cheryl Crow: Mic drop. Thank you. That was perfect. I’m so glad that’s being recorded. That is being gonna be turned into a highlight.

Do you have a favorite gadget or tool in your arthritis toolbox, visible or metaphorical?

[00:54:28] Seth Ginsberg: No, but I, I do, I can say I remember somebody once referring to their graver stick as the claw of dignity, and I just love that. And the metaphorical tool, I would say for sure, boundaries the ability to say no with a smile and sometimes if needed a snack.

[00:54:49] Cheryl Crow: Oh my God, I, I need to talk to you about so many things.

Thank you. You’re inspiring me. Okay. Do you have a favorite book or movie or show that you’ve watched recently? It doesn’t have to have anything to do with work. Just for fun.

[00:55:03] Seth Ginsberg: Wow. Shout out Bluey. Just ’cause my family the zeitgeist of Australia and the show that has made every parent realize they’re not as good as they could be.

[00:55:15] Cheryl Crow: We need models though. We do models that we learn, we,

[00:55:19] Seth Ginsberg: we sure do in the form of these dogs. But, but yeah, that, and having sat down and watched the whole series of Young Sheldon recently with my family, I found that to be a, a, a fun quirky little show. Yeah, but I, I, I don’t, I don’t get enough time to consume things like that.

I, I tend to focus more in periodicals, so, no,

[00:55:41] Cheryl Crow: that’s great. No. Yeah, you’re like, I really liked Arthritis Research and Care Volume 62,

[00:55:45] Seth Ginsberg: pretty much, pretty much.

[00:55:47] Cheryl Crow: That’s okay. Sometimes they have more in letters to the editor and stuff that are more readable, but, or you wanna read the evidence it’s exciting.

And last one, what does it mean to you to live a good life and thrive with rheumatic disease or as AI likes to translate it for me, traumatic disease.

[00:56:07] Seth Ginsberg: Right, right, right. Autocorrect. Autocorrect.

[00:56:11] Cheryl Crow: Yeah.

[00:56:11] Seth Ginsberg: Look, it means thriving with arthritis means designing a life that fits you instead of trying to fit into someone else’s version of normal.

And thriving isn’t about avoiding pain. It’s, it’s really about creating meaning in the middle of it. And pain is a part of life. We, we need to accept that and we need to thrive through it.

[00:56:39] Cheryl Crow: You are speaking my, you are speaking my language. I call that the acceptance paradox. It’s so hard to get there ’cause it’s so hard to loosen your grasp on this hope of avoiding all pain if you just try hard enough. But once you surrender to the fact that pain is inevitable, it’s free, it’s freeing. Listen to that part again ’cause it’s really, really true.

[00:57:02] Seth Ginsberg: Yeah. Hit the, hit the hit the reverse.

30 seconds,

[00:57:05] Cheryl Crow: twice. Yeah. Hit rewind. That’s us in our generation. Hit the rewind button. Sorry. That’s, skip that. 15 seconds to younger people.

Where would you like people to find you or your work online? I, I’m gonna put a bunch of the links in the show notes, but

[00:57:21] Seth Ginsberg: Yeah, sure. I would just click on those and know that if you Google Seth Ginsberg know that there are three of us many others I’m sure.

But the three good ones, if you can call ’em that are the, former Disney actor, we’ll call it. Oh John Gotti, the, the gangster’s lawyer. And yours truly. So, while my mom still wishes I became a doctor, I know what I remain the the guy with arthritis who has been a part of this now for a little bit.

And have lots of resources. Never, ever the best navigation that they deserve to help people get to them. But Google helps. YouTube helps podcast search engines help. And and definitely wanna offer up everything that we have to folks. And if you’re listening today and you’re in pain, I, I just, or, or even if actually if you’re feeling invisible, which I know a lot of people.

Do a lot of times I just want you to know that there are people out here fighting for you and they’re advocating for you and they’re building for you, and I’m one of them. And, and, and Cheryl’s definitely one of them. And, and we’re here for you. So appreciate you coming along here for this tuning in.

If you’re still listening at this point it’s time to go to sleep.

[00:58:43] Cheryl Crow: No, people do listen. I, I think, I mean, I don’t really, based on their feedback, they listen to the end a lot of times, so

[00:58:51] Seth Ginsberg: They listen if they want to. I’ve, I’ve learned. Yeah. And and that’s important. And if you’re still here with us just know you’re, you’re seen and, and also know that we’re out there fighting hard for you.

[00:59:02] Cheryl Crow: I love that. And I would tell your mom that you’ve probably helped more people as a patient advocate and with your work than you ever could have as a doctor. So no, not to knock any doctors, but there are many, many different ways to achieve the impact that comes with being a direct care provider. So I I am just, I’m cel.

I am with you. And first of all, what you said about being there for people who are fighting invisible or feeling invisible is so, so powerful. And I’m just with you and celebrating, I’m celebrating five years of arthritis life, so I’m just 20 years behind you. No. But I’m amazing celebrating 25 years of Creaky joints with you.

Yeah.

[00:59:39] Seth Ginsberg: Mazel.

[00:59:40] Cheryl Crow: Thank you. Thank you. Yeah, it’s been a, it’s been a wonderful, yeah, wonderful journey. I’ve learned so much through partnering at times with other, entities like Creaky Joints and Global Healthy Living Foundation, and, and we all are stronger together. So it’s been really fun to become, feel so much more connected to other people doing similar work, than I did fi even five years ago.

[01:00:00] Seth Ginsberg: Well, a huge thank you to you for being you and doing you and, and I don’t know what the five year anniversary gift is. I should know stuff like that. So that’s a, that’s an awesome milestone. And I’m

[01:00:14] Cheryl Crow: looking up the 25 year one now. Silver. Is it silver?

[01:00:17] Seth Ginsberg: 25 is silver, yeah. Oh,

[01:00:19] Cheryl Crow: wow.

[01:00:19] Seth Ginsberg: Five is wood.

[01:00:21] Cheryl Crow: Yeah.

Oh five is wood.

[01:00:23] Seth Ginsberg: There you have it

[01:00:24] Cheryl Crow: black.

[01:00:24] Seth Ginsberg: But yeah. Awesome, awesome, awesome. I, I’ve enjoyed this visit and I just want you to know, we’ve got your back. We really appreciate it. This in a big way and, and to everyone out there listening we definitely got your back and you’ll get through it.

We’ll get through it together

[01:00:40] Cheryl Crow: day by day, minute by minute. Well, thank you so much and we’ll talk to you later. Thanks. Bye.

[01:00:46] Seth Ginsberg: Thank you.