Health Hats, the Podcast Danny van Leeuwen, Health Hats

Shana Davidson shares her day-to-day Long Covid challenges using the "spoon theory," a metaphor for the limited energy reserves people with chronic illness face



Summary



The episode explores the fascination with prolific enigmatic conditions, which are common yet complex and often misunderstood illnesses like fibromyalgia, chronic fatigue syndrome, lupus, endometriosis, and long covid. These conditions highlight systemic issues in healthcare, such as various biases and the complexities of corporate medicine and research. Shana Davidson, having personally experienced misdiagnosis and the challenges of navigating these conditions, emphasizes the intersectional barriers faced by women, people of color, and those with mental and spiritual health challenges.



Shana shares her journey with long covid, discussing the day-to-day management challenges using the "spoon theory," a metaphor for the limited energy reserves people with chronic illness face. Shana's experience underscores the difficulties in obtaining a diagnosis and appropriate care, reflecting broader issues in the medical system's handling of chronic conditions.



Throughout, the podcast touches on themes of resilience, the need for advocacy, and the struggle for recognition and adequate research in treating long covid and similar conditions. The conversation also highlights the importance of compassion and understanding within the medical community and society towards those living with chronic illnesses.



Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.



Contents







Table of Contents

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EpisodeProemPodcast introLearning health is fragileSpoons, SpooniesPace Yourself versus SpoonsBudgeting spoonsRecovery mode variation in spoonsContracting CovidOpening upYikes, Long Covid?Tired of Pursuing AnswersLong Covid CenterAsynchronous communicationFinally Diagnosed Call to actionRebel HealthSocial media help – 2-edged swordUseful helpSome compassion, pleaseWhat’s in a Name?Chronic Disease Management – Diagnosis, Symptoms, Care, TreatmentInvesting in Long CovidReflectionPodcast Outro







Please comment and ask questions:



at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, Twitter, TikTok to @healthhats



Production Team



Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digit marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.



Podcast episodes on YouTube from Podcast.











Inspired by and Grateful to 



Jeff Horner, Yaneer Bar Yam, Melissa Reynolds



Links and references

Episode

Proem

Ants: Prolific and enigmatic. Image by Open Art AI in style of Paul Barson



Prolific enigmatic conditions fascinate me. Prolific (many) is the opposite of rare (few), so not a rare condition. Enigmatic means mysterious riddle. Examples of enigmatic conditions include fibromyalgia, chronic fatigue syndrome, lupus, endometriosis, and long Covid. Enigmatic conditions put a spotlight on isms – racism, sexism, ageism, ablism, paternalism. They reveal a near-universal discomfort with uncertainty. And when you pull back the curtain to try to search or solve, you find the weight of corporate medicine, the research industrial complex,

Turn-around: Grandson interviews Health Hats about his Zelig-like career path and choices: unpredictable, privileged, mentored, supported, and spiritually healthy.



Summary



Health Hats is interviewed by his editor, grandson Leon, delving into a discussion about his diverse and impactful career. The episode starts with Leon interviewing Health Hats about the origins and motivations behind the podcast, tracing back to a serendipitous naming and a road trip that solidified the podcast's visual identity.



Health Hats shares his journey from opting out of a higher-paying job that required him to cut his long hair to embracing a path in healthcare as a psychiatric aide, which led him to nursing school.  The story also touches on being a male nurse in the 70s, transitioning from direct care to significant hospital and quality management roles.



Leon and Health Hats discuss the significant impact of personal decisions on career paths, the unpredictability of life, and the profound influence of one's birth and circumstances. Health Hats reflects on his efforts to improve healthcare systems, advocating for better staff and patient conditions and participatory health. The episode explores Health Hats' professional life, his philosophy on work-life balance, his role as a change agent, and his commitment to continuous learning and improvement.



Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.



Contents







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EpisodeProemPodcast introBirthing Health HatsNursing school – what’s hair got to do with it?Wanted a lifeFirst male public health nurse in Western MassWe don’t hire men in nursing hereRetiring in our thirties as back-to-the-land hippiesCouldn’t manage an emergency at homeTwelve-bed hospitalWest Virginia, a Third World stateAdvanced Cardiac Life Support Call to actionVolunteering for the Emergency SquadFrom direct care to managementChange agent: staffing and visiting hoursRemote Learning for a Master’s DegreeMoving onStudent of organizational healthOutspoken, driven change agentBest Boss EverThe will to change – leadershipNo, lay me offRetiringProfessional life, more than the jobCan’t keep a jobReflectionPodcast Outro







Please comment and ask questions:



at the comment section at the bottom of the show notes

on LinkedIn 

via email

YouTube channel 

DM on Instagram, Twitter, TikTok to @healthhats



Production Team



Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk 

Leon van Leeuwen: article-grade transcript editing 

Oscar van Leeuwen: video editing

Julia Higgins: Digit marketing therapy

Steve Heatherington: Help Desk and podcast production counseling

Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection, including Moe's Blues for Proem and Reflection and Bill Evan's Time Remembered for on-mic clips.



Five-minute episodes on YouTube.



















Inspired by and Grateful to 



Jim Bulger and Bob Doherty (deceased), Eric Pinaud, Jane Sarasohn-Kahn, Luc Pelletier, John Marks, Ann Boland, Lynn Hubbard



Links and references



Are medication error rates useful as a comparative measures of organizational performance? was published in The Joint Commission Journal on Quality Improvements in 1994 receiving the David K Stumpf Award for Excellence in Publication from the National Association for Healthcare Quality. The article was referenced in the book, Error Reduction in Healthcare by Patrice L. Spath in 2000.



1977 article about Danny van Leeuwen,

Kathleen Noonan’s quest to build bridges between communities & researchers with long-term relationships & respect for experience & expertise, just like juries.



Summary



Kathleen Noonan, the CEO, catalyzed the transformation of the Camden Coalition into a national platform for complex care. She focused on capacity building, bridging healthcare research with community organizations, and emphasizing the power of diverse partnerships. Noonan is a staunch advocate for community-driven healthcare, pushing institutions to incorporate local insights and foster long-term relationships that shape better research and policy outcomes.



Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below.



Two five-minute clips on YouTube.











Contents







Table of Contents

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EpisodeProemPodcast introThe fragility of healthJourney to healthcare advocacyInsights from the legal and corporate worldsTransition to Children’s Policy and HealthcareFirst encounter with Camden CoalitionThe impact of diversity at conferencesMeeting of the minds over community – research interfacesAn outsider co-directing a Research CenterImplementation, a different animal altogetherWho asks the research questions?Partnering in the communityEarning the right to speakFull of myself Call to actionPunching above our weight classFrom a local to a national organizationComplex care centerCommunity Nursing in 1976 – Walking Inner City route.Capacity to partnerLong-term relationships, lean into expertise.MediationMessy and localCommunity participation in research – capacity buildingStart with the research questions askedLong-term relationships informed consumers and researchersConsider juries as an effective, diverse set of mindsExpertise versus credentialsReflectionPodcast OutroPlease comment and ask questions:




Episode

Proem

In 2020, early in the COVID pandemic, I joined with several colleagues asking the questions:



How can the research industry help laypeople and communities find evidence-based guidance on how to live safely? Guidance that answers their questions when needed? Guidance that feels familiar and helpful. Guidance they trust. How can we be inclusive of our communities' awesome diversity? See the podcast episode here.



We spent several years exploring those questions, informing my passion for community-research partnerships. I highlight such partnerships as often as possible in my podcast. One of my primary advocacy goals is to promote research that answers questions the public and communities ask.



My guest today, Kathleen Noonan, is CEO of the Camden Coalition, a multidisciplinary, community-based nonprofit working to improve care for people with complex health and social needs in Camden, across New Jersey, and nationwide. They develop and test care management models and redesign systems in partnership with consumers, community members, health systems, community-based organizations, government agencies, payers, and more to achieve person-centered, equitable care.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

The fragility of health

Health Hats: Kathleen, thank you so much for joining us. I've been looking forward to this. When did you first realize health was fragile?



Kathleen Noonan: That's a great question. There are so many different answers to that. At some point as a kid, you realize that your parents aren't just older than you,

Exploring the journey of coffee from farm to cup with expert Jen Stone, delving into flavors, cupping, & the ethics of coffee production. Music & Health, too



Full 36-min episode on YouTube







Two five-minute clips on YouTube.











Click here to view or download the printable newsletter



Contents







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EpisodeProemPodcast introIntroducing Jennifer StoneHealth is FragileProfound Knowledge of Coffee or CaffeineCaffeine Delivery SystemCoffee CupperCoffee Flavor Notes Call to actionCoffee Flavor Notes in My CuppaDifferent tastes and circumstancesFermentationTransparencySocial Justice in Coffee MakingMy PaletteSlow down and tasteYou’ve ruined me a bitEquipmentReflectionPodcast OutroPlease comment and ask questions:




Episode

Proem

When I take two minutes to bitch about the annoyances of having Multiple Sclerosis, I insist that I can’t be repetitive. I must whine and complain with new words. How many words do we have for describing symptoms of pain? Not enough. Sharp, dull, achy, daily, itchy radiating, nauseating, disabling.



Greenland has 46 words for snow and no wonder. Profound knowledge about something leads to more words being needed and created. The better we can describe ourselves to ourselves, the deeper we understand our nuances. More accurate and specific descriptions lead to better communication of our symptoms, moods, and circumstances with our health team. Then, we can make informed decisions, plan, and adjust together.



Believe it or not, this rant about words leads us to today’s episode on coffee. Welcome to my new hat – coffee snob. Our guest is Jennifer Stone, my colleague in my Thursday morning mastermind group for solo entrepreneurs. Jen is a Sommelier of Coffee and the host of the Coffee Explorer Podcast, a Quality Lecturer, and a Licensed Q Grader by the Coffee Quality Institute. She is internationally recognized as an Expert Coffee Taster and Judge for the Cup of Excellence. She has expertise in finding, sourcing, and sharing remarkable coffees from quality global producers. Over her career, she’s opened multiple cafes and created several direct-to-consumer and business-to-business specialty coffee brands. She provided expertise to others in these areas and is always excited to share the best ways to brew coffee with the market. Jen Stone has opened my eyes in unexpected ways. Drink up!

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Introducing Jennifer Stone

Health Hats: Jen, you've opened many senses for me. We met over the business. We are working together on our business; you know how that's growing and managing. But I've learned from you about coffee, not just coffee.



It's about the sense of taste because it's not just, you know, while I'm learning to appreciate fine coffee. I was concentrating more on what was happening in my mouth. I'm finding it with food, chocolate, and alcohol, and just more awareness.

Health is Fragile

Health Hats: When did you first realize health was fragile?



Jennifer Stone: This is such an interesting question. I love that you asked about the word health as fragile and not life as fragile. When a loved one passes, or you have a near-death experience, that speaks about life, but health, specifically, is a little vaguer. About a year and a half ago, I could say I loved to run. I'm not fast, but I love to jog and exercise. One of my knee joints began to wear down.

Susannah Fox’s "Rebel Health" on the power of Seekers, Networkers, Solvers, & Champions in driving patient-led innovation & the communal fight against disease.



Full 36-min episode on YouTube







Two five-minute clips on YouTube.











Click here to view or download the printable newsletter



Contents







Table of Contents

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EpisodeProemPodcast introRealizing the Fragility of HealthTransition from Research to ActivismThe Role of Perception in HealthcareA System Versus Community View of Healthcare InnovationHacking Healthcare and StartupsMotivation to Solve Call to actionSeekersNetworkersSolversChampionsNetworker, Seeker, Solver, ChampionNetworker, Champion, SolverPersisting BossLeading by Helping the HelpersActors on the Stage of InnovationEmergence of ChampionsServing CommunitiesRevolutionary Energy – Regina Holliday and Casey QuinlanDraft Counseling – Working from the InsideChampions Stoke FiresRebels in Health – You Are Not AloneC-Suite and Government Meet RebelsStep into Your PowerThe Enemy is Disease​ReflectionPodcast Outro




Episode

Proem

Rebel Health by Susannah Fox



As a student of advocacy and activism, I draw warmth from the heat of others’ passion, marvel at the diversity of origin stories, and burst with curiosity about what might come next. How did they start on this journey, and why do they persist? I’ve been a nurse for 50 years. One of the best things about nursing for me was the license to be nosy – for a brief time - a visit or a stay. This nosiness melds nicely as a podcaster for an episode. I often ask guests, “When did you realize health was fragile?” Another student of advocacy and activism is our guest, Susannah Fox.  Susannah is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, has just been published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation, and she directed the health portfolio at the Pew Research Center’s Internet Project.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.



Health Hats: Susannah Fox, how are you? It's so good to see you. I've been looking forward to this. You've been my idol for a long time. I first learned about you when you were at Pew Research Center, and I thought your perspective and research were so helpful.

Realizing the Fragility of Health

When did you first realize health was fragile?



Susannah Fox: Wow. The first time I realized that health was fragile was when my dad was a flatliner on the table at the hospital after his heart attack. He was in his fifties and someone who, to anyone who looked at him, would've thought he was a health nut. He went four miles three times a week. He was fit. He loved to hike. He was a mountain climber. And yet he had genetically high cholesterol and a hidden, blocked artery. So, they luckily were able to revive him, and he had open heart surgery and lived long enough to then get kidney cancer in his sixties and melanoma in his seventies.



My dad was my model for lifelong health and perseverance. I love this question because it explains how you learned that health is fragile. But then also what? What happened when you learned that health was fragile? For me, it was seeing my dad persevere to regain his health each time he had a setback....

Celebrating my audience. Describing my multimedia journey, stats, ongoing advocacy, future episodes and a musical bonus featuring the host on the Bari Sax.



Show Notes at the end.

Watch on YouTube

None today.

Read Newsletter

The same content as the podcast, but not a verbatim transcript. Could be a book chapter with images. download the printable transcript here



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Watch on YouTubeRead NewsletterEpisodeProemPodcast introManaging my bandwidthStill learning in my sandbox.AdvocacyPodcast OutroEl QuitrinEpisode Notes




Episode

Proem

Welcome to this bonus episode of Health Hats, the Podcast for subscribers I appreciate. Life is good while I play in the sandbox of audio-visual communication about best health. One of my Reckoning colleagues (we review each other’s podcasts), Craig Constantine, describes his audience in each episode so he remains focused. I look at the bobbleheads on my windowsill: Scarecrow, Rosie, the Riveter, and Scully from the X-files. My audience is people who help people on their journey toward best health through caregiving, technology, measurement, spiritual strength, and planning. You get the idea.



For an added treat. At the end of this post, I'll include Lechuga Fresca Latin band playing El Quitrin by Bebo Valdez with me on the Bari Sax. Link here if you want to listen now.

Podcast intro

Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this.

Managing my bandwidth

I’m finding video creation and production so exciting that I spent 100 hours on the last episode, #214, with Fred Trotter. I can’t sustain that pace. I realized I had spent so much time on a full-length video with images, title slides, and the like that I neglected the meat and potatoes – the blog/newsletter and audio podcast. I also need more time to play my horn and improve my music production skills. So, after spending all that time, I published the full audio podcast (63 minutes), two five-minute and four one-minute videos, and a 30-second teaser/trailer. I think I’ll put the five-minute ones on YouTube as discrete episodes as they stand alone.  You can find them here: Video 1: Naughty Secret about Chart Reviews https://youtu.be/yLRilkr1LJI and Video 2: ChatGPT and health coverage https://youtu.be/pk4wYl0_U9s.

Still learning in my sandbox.

I remain committed to multimedia because you are all so different, and it’s a hoot. I’m continuing my understanding and skill at short-form videos for social media, especially Instagram. My team of Julia, Kayla, Leon, and Oscar cheer me on. I love that I can still learn.



If stats interest you - I don’t know what they mean - for some reason, the downloads for the audio podcast have increased from an average of 5-10 a day for years to 27 a day for the past 30 days (or an increased from 80 to 800 an episode). 90+% of those downloads are consistently listened to for at least 3/4 of the episode length over the years (that includes people who automatically download. See what I mean about not being sure what stats mean).  For those who subscribe to the newsletter version, with almost 50% opened, and readers spend more than five minutes reading when they do open. Kayla tells me I should be proud of that. Social media stats indicate that people scroll past and increasingly stop but don’t stick around for over a second. It is early days, and I’m refining my process. YouTube shorts require clips to be less than 60 seconds, but I’m not sure that’s my target so I may go for two-minute clips on Instagram and TikTok.