Health Hats, the Podcast

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 canalso be found below. Contents Table of Contents Toggle 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, the first male public health nurse in W Mass It sounds like a Zelig effect (if you know Woody Allen) or a Forrest Gump effect (if you know Tom Hanks) Jane Sarasohn Kahn, a blogging health economist West Virginia The University of Minnesota ISP Program Episode Proem As you may know, my production team includes Grandson Leon,

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 canalso be found below. Two five-minute clips on YouTube. Contents Table of Contents Toggle 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, but older adults don't stay around. When I was a kid, there was a girl on my block who passed away from pneumonia. It was an early developmental moment. But then, when did you realize that health is fragile because the healthcare system i...

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 Table of Contents Toggle 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. I have some arthritis in one of my knees, and it felt like this bone-on-bone thing. It was disabling. After a few days of it not going away, no matter how much ibuprofen I took, I realized I needed my knee to strengthen. I don't want to focus on my knee.

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 Toggle 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. Health Hats: That's admirable. Transition from Research to Activism Health Hats: You had these experiences and are now in activism. How did that path happen? How did you get where you are now?

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 Contents Table of Contents Toggle 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. Again, this is a totally fun sandbox. Advocacy Rebel Health by Susannah Fox Advocacy-wise, my attention is shifting to Long Covid,

Fred Trotter on the balancing privacy & connection, the role of AI in societal judgment, and practical privacy protection strategies with a nod to Mighty Casey Watch two five-minute podcast clips on YouTube. Click here to view or download the printable newsletter with associated images Contents Table of Contents Toggle EpisodeProemPodcast introPrivacy in Digital CommunicationHarm reduction, safety, data aggregationCommunication minimalists and maximalistsPrivacy in small villages during the Bronze AgePrivacy in the viral modern ageJudicial enginePrivacy and shameDenied accessPeer-to-peer connection and privacy riskPeople-to-needs connectionA connection you don’t know you haveHarm reductionOversimplification of harm reductionRedliningAI Artificial IntelligenceCall to actionChatGPT and health coverageAggregating informationAI judicial processes by Insurers outside the courtsWhat can I do to reduce potential harm?The Light CollectivePassword managersPseudonymityLow-tech approachesThe Electronic Frontier FoundationInter-rater reliability in chart reviewsInter-rater reliability and AIAI can make a complex system faster, not betterSituational awarenessExpectations of organizationsChatGPT and Large Language ModelsThe Mighty Casey Quinlan ApproachDALL.E – AI ImagesPrivacy of creatorsDangerously hopeful​ReflectionPodcast OutroPlease comment and ask questions:Production TeamCreditsInspired by and Grateful toLinks and referencesRelated episodes from Health HatsCreative Commons LicensingCC BY-NC-SADisclaimer Episode Proem How does YouTube know so much about me? I’m searching on my browser for solutions to my too-slow-responding Bluetooth mouse. In moments, YouTube feeds me shorts about solving Mac problems. I’m following a teen mental health Twitter chat, and my TikTok feed shows threads about mental health apps. How do they know? I’m getting personal comments about my mental health. My mental health is mostly good. Who else will know? Do I care? I live my life out loud. I don’t share what I wouldn’t want on a billboard, which, for me, is almost everything. When is that unsafe? When would I be embarrassed? I’m no longer looking for work, so I don’t care. Who can access my data? What should I share? What does privacy even mean? How does privacy impact the need for connection? Isn’t privacy a continuum – different needs at different times from different people? So many questions. Today's guest, Fred Trotter, co-authored the seminal work Hacking Healthcare. Fred is a Healthcare Data Journalist and expert in Clinical Data Analysis, Healthcare Informatics, Differential Privacy, and Clinical Cybersecurity. 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. Privacy in Digital Communication Health Hats: I picture movement along a continuum when I think about Digital Privacy. Complete privacy is connecting with no one. That’s intolerable. No privacy is connecting with everyone about everything. That’s unsafe and exhausting. Privacy and risk tolerance go hand in hand for me alone and for me with my peeps and tribes. Risk tolerance isn’t fixed it changes with context. My thoughts get muddier when I associate privacy and connection. They are flip sides of the same coin. I need community connection. But the more I connect (content and reach), the more complex privacy becomes. My approach to managing privacy involves harm reduction, a term used in substance use treatment. So, based on my ever-changing risk tolerance and my need for connection, how do I reduce the harm privacy issues can cause? Harm reduction, safety, data aggregation Fred Trotter: It's funny that you mentioned harm reduction. A college friend of mine,

Lisa Stewart interviews Health Hats to discuss family, music, & listening to younger activists taking over navigation & reform of healthcare. Watch on YouTube Download the printable newsletter here Contents Table of Contents Toggle EpisodeProemPodcast introWhy reflect? Accept and look forward.Bitch in bursts, not dribblesCatastrophizing, pathological optimistMusic, podcasting, grandsonsListening to younger activistsConnection through video, Instagram, YouTube shortsImpact Call to actionProgressing in musicProgressive condition and musicTravel with abilities in Costa RicaTravel with abilities in the USWords of wisdomReflection on AdvantagePodcast OutroPlease comment and ask questions:Production TeamCreditsInspired by and Grateful toLinks and referencesRelated episodes from Health HatsCreative Commons LicensingCC BY-NC-SADisclaimer Episode Proem Boland van Leeuwen family Happy Holidays, family, friends, and colleagues. May the 2024 New Year infuse wonder, community, and rejuvenation. I reunited with my friend, Lisa Stewart, at the PCORI Annual Meeting a few months ago. Lisa suggested that she interview me for the new year. When I met Lisa, she was Senior Engagement Officer and Health Equity Advisor at PCORI (the Patient-Centered Outcomes Research Institute). Currently, Lisa is the Principal at Torchlight Engagement Advisors & Leadership Coaching. Her joy lives in connecting ideas, people, and groups for organizations serious about improving the health outcomes of over-burdened communities through health equity strategy implementation and integration, cross-sector partnerships, impact investing, and capacity-building. We ponder privilege, listening, bitching, travel, family, and music. Hang on. 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. Why reflect? Accept and look forward. Health Hats: Hi, Lisa Stewart. Lovely to see you, Lisa Stewart: Wow. It's lovely to be seen and be here with you. We had this wild and crazy idea that it was time for Danny to be interviewed, right? We're going to turn the tables on Danny. DALL·E 2023-12-16 - a color photo of a person looking in a mirror and seeing a black and white younger version of herself What better time of year as we march into 2024 and start thinking about the life we want to lead and what we want to do differently? I’m thrilled to be in conversation with you anytime, Danny. Anything you want to say? Health Hats: I have mixed feelings about reflection. On my podcast, I start with a proem, a preface. Why do I have the conversation? Why this guest, why this topic, whatever. A reflection at the end, done after production - the interview, the producing, the editing - were there pearls here? Is there one more story to tell? But the reflection is essential even though I'm not really a backward-looking guy. Lisa Stewart: Tell me more. Bitch in bursts, not dribbles Health Hats: Life has ups and downs. It is just the way it is. You can't have an up without a down where everything is flat - no ups and downs. Sounds boring to me. I have a chronic illness, and I'm pathologically optimistic, right? That's my style. Other pathologically optimistic people have taught me that you need to take two minutes periodically and just vent. And do the life sucks. Woe is me stuff. But mostly, I don't want to look back and think woe is me. So that's what I mean by not looking back. Accept what is and what are we going to do now. Lisa Stewart: Very practical. Do you have a ritual around your two-minute releases? DALL·E 2023-12-16 - biracial couple laughing, one in a wheelchair looking at their watch Health Hats: It's a good question.

Pathways & switches of pain affect well-being & productivity. Amy Baxter, MD. explores recent insights about managing pain and learning coping mechanisms. Watch on YouTube Download the printable newsletter here Contents Table of Contents Toggle EpisodeProemPodcast introLearning from lived experienceOldest and Best Survival SystemPain as opportunityThe thalamus conducts the switchboardPain: Your brain’s opinion of your safetyWhat’s going on? Communicating to physiciansSickle cell, self-knowledge, mu receptorsNeurotransmitters: on or offBrain FertilizerExercise as WD-40 loosening lubricantAcceptance and Commitment TherapyBuilding Resilience to Trauma and Pain Call to actionHolocaust PTSD, painMelissa versus FibromyalgiaHelpers: Child Life SpecialistsBrain’s survival systemPhlebotomists and clownsPain wuss or high toleranceFear and controlHope in the right frontal cortexGuiding someone to manage their painPrimary care in Managing PainOverride and telehealthCultural humilitySoul points and a bucket of painI am not my painLove myself, pain includedReflectionPodcast OutroPlease comment and ask questions:Production TeamCreditsInspired by and Grateful toLinks and referencesRelated episodes from Health HatsCreative Commons LicensingCC BY-NC-SADisclaimer Episode Proem Buzzy, Relief from Needle Pain by Amy Baxter How crazy is it that pain is one of my favorite topics? Not so crazy as pain may be life’s most common symptom. One study pegs the annual cost of pain (as a primary diagnosis) to be between $261 to $300 billion. Yikes. No one I’d rather talk with about pain than Amy Baxter. Amy and I correspond regularly about life and pain. We last recorded a conversation about pain in July 2019, Pain: The Solution - Many Solutions. Our knowledge about the pathways and switches of the brain’s survival system has increased dramatically since 2019. Let’s jump right in. 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. Learning from lived experience Health Hats: You've learned much about pain since we last talked. Tell us about that. Amy Baxter: I broke my neck in 2015 and then got intubated for a while, and then I had a ripped rotator cuff that I ignored until it got horrific. So, I feel grateful that I've had the experience to cope with my own acute and chronic pain, mostly chronic. It's nothing like I imagine having a genetic issue or having an inflammatory ongoing issue, and particularly something like covid or fibromyalgia or an autoimmune system situation where it's ongoing and systemic. Nonetheless, I've had that experience, which has been valuable. I also have been working with the National Institutes of Mental Health, Helping to End Addiction Long-Term Initiative, bridging that place between pain and opioid use because if we didn't have the issues of post-surgical pain and acute pain that we treated with opioids, we wouldn't have an opioid problem. I've been busy. Health Hats: Goodness, where should we start? Amy Baxter: Let's start with the stuff I put in the TED Talk because I spent a lot of time trying to encapsulate what I'd learned so people could use and benefit from it, change society and how we deal with healthcare in this company or country—Freudian slip. Oldest and Best Survival System Amy Baxter: Physicians are not taught about pain in medical school. We don't know what it is. We don't understand how to treat it. We don't think it's our job because we're supposed to figure out what caused the pain and fix that or inflict pain to diagnose it. But most people go to the doctor for pain. So that was something I hadn't appreciated. What we have learned about pain in the last 20 years through fu...

My son, Mike, died 21 years ago at age 26. Wasn't born with a tattoo telling him how long he had to live. Best spiritual health of his life. Left me a sign. 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 Contents Table of Contents Toggle Read NewsletterContentsEpisodeProem 2023Proem 2020Open Hearts 2018Love myself 2002He met a girl 2018Birthday wishes for the old guy 2002Spiritual health 2018Lifetime warranty 2018Not personalizing death 2018Leave me a sign 2018Reflection 2020Podcast OutroComment and ask questionsCreditsLinksRelated podcasts and blogsCreative Commons LicensingCC BY-NC-SADisclaimer Episode Proem 2023 I resurrect this episode to celebrate Mike and thank you, my readers, listeners, and watchers. It's hard to believe that 21 years have passed since Mike died. He would have been 46. We would have been proud of him, and he proud of us. "Danny helped me love myself. I had to love myself to have a good relationship with him." Still, the most glorious thing anyone has ever said about me. Let’s celebrate loving ourselves and at least one more. Mike, I feel you. Proem 2020 I wasn’t born with a tattoo on my ass telling me how long I have to live. Welcome to the second anniversary of Health Hats, the Podcast, episode number 99. On November 15th, 2018, the first episode honored my son, Mike Funk, who died on November 18th, 2002, eighteen years ago, age 26, of metastatic melanoma. Mike, a wise poet, found his best spiritual health in the last year of his life. Hence, the most memorable sentence in my life. I wasn’t born with a tattoo on my ass telling me how long I have to live. I’m grateful to have known Mike, my son, our brother, our friend. I resurrect this episode to celebrate Mike and celebrate this fantastic medium of sound and storytelling for advocacy and connection. Podcasting enriches my life and my work. I use podcasting to explore and organize my mind's chaos, experiences, and feelings. I connect with people I admire for brief intimacies. I’m thankful for my podcasting compatriots. We have met weekly and biweekly for two years to support, critique, and challenge each other as artists and technicians. You know who you are. I’m grateful to my readers, listeners, sponsor, Abridge, and web/social media coach, Kayla Nelson. I miss my mom, Ruth van Leeuwen, my first and greatest blog critic, and follower. She would have tried to learn podcasting technology if she could have found a 15-year-old from her church to teach her how to use a podcast player. She died around Thanksgiving in 2014. Gratefully, here you go, episode one and ninety-nine. Happy Thanksgiving. Open Hearts 2018 Health Hats: In this session, I'll share some tape of an interview with Mike a few months before he died. Bob Doherty conducted that interview and some thoughts and stories from me. One day, Mike and I were sitting at the kitchen table, talking about dying and superpowers. And Mike thought that he and I had the same superpower. We both accept what is. Not the ‘life sucks, what’re you gonna do’ variety of acceptance, but the ‘yup, here is impending death, how can we live our best lives’ variety. ‘Yup, he died young. Young death happens a lot. You open your heart, and tragedy walks right in. What's the alternative, closed heart? Not for me. So, let me set the stage for you. This recording happened on July 17th, 2002, at my 50th birthday party. We had the party in the Potato Barn in Schoharie County, New York. When you hear some of the audio, you'll hear a lot of noise. I'm able to filter some of it out, but not all of it. So here we are at my 50th birthday party. Love myself 2002 Bob Doherty was interviewing Michael Funk. I'm sure you'll be able to tell who is who. Michael Funk: Yeah. I meant to just shoot questions, and we'll just rap. Bob Doherty: All right.

Personal growth living with a chronic illness, sickle cell, the importance of open communication, building a supportive community, & advocating for oneself. About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I'm the Rosetta Stone of Healthcare. 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 this. We respect Listeners, Watchers, and Readers. Show Notes at the end. Watch on YouTube 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 Contents Table of Contents Toggle About the ShowWatch on YouTubeRead NewsletterContentsEpisodeProemPodcast introFour more years, a motherYou mean I won’t get sickle cell?No lying in motherhoodHarder on myselfTreat us differentlyWhere do they fit in the world? Call to actionMoving on and building communityMuslim communityHealthcare CommunityTrust my teamEgo-centered, patient-centeredSpeaking truth to powerMakeup for the Emergency RoomIntentional whyYou can’t read my mind?I’m not your caregiver. I’m your partner.End-of-life. It’s for real.Live below your means, cut out the noiseReflectionPodcast OutroPlease comment and ask questionsProduction TeamCreditsInspired by and Grateful toLinks and referencesDisclaimerRelated podcastsCreative Commons Licensing Episode Proem I’m delighted to reconnect virtually with my dear friend, Fatima. We last recorded several conversations, two with her mother, Esosa, in 2019 as part of the series on people with complex conditions transitioning from pediatric to adult medical care. The titles included Living a Happy Full Life, Good Listeners, Good Conclusions, and I’m Not Drug-Seeking. I’m in Pain. Becoming friends with Fatima has been one of the delights of my last decade. I especially value sharing our diverse experiences, finding many common cords (chords), leading to ongoing separate growth and development. From Fatima, I’ve dared to proudly introduce myself as a 2-legged cisgender old white man of privilege. 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. Four more years, a mother When we had the conversations in 2019, you were a mom, but it wasn't about you being a mom. Now, you've been a mom for four more years, dealing with sickle cell and being part of the family unit. Your mom said it's not just the person with the diagnosis; the whole family must manage. What are your thoughts about that now? You and your kids are getting older. Your son's graduating from preschool. I can't believe it. Anyway, what are your thoughts about that? Fatima Muhammed-Ighile: She states that sickle cell is a family issue. These last few years, I've understood that more profoundly. My kids are now five and six. They ask questions, and there are times when they can now comprehend how my restrictions, based on when I feel sickle cell pain, affect their lives. So that's required me to have discussions with them that, at times, I wish I could have delayed. Health Hats: If I remember correctly, your daughter probably has the most challenging questions. You mean I won’t get sickle cell? Image from https://www.kold.com/2021/01/28/federal-committee-recommends-more-research-care-patients-with-sickle-cell/ Fatima Muhammed-Ighile: It was a lazy Sunday afternoon,