Health Hats, the Podcast

Fibromyalgia. Managing Pain. Doing the Work.

July 21, 2019 16:37 - 43 minutes - 47.1 MB

When I examine the puzzle of pain management and opioid use, I often see Melissa Reynold’s words in my mind’s eye. She lives with, struggles with pain. She’s so sensible about pain. Melissa writes about Fibromyalgia, chronic pain, and pregnancy, separately and together. I read her faithfully and comment more than I do with most. She has inspired me from the start. Please allow me to share Melissa’s wisdom with you here. Blog subscribers: Scroll down through show notes to read the post. If yo...

Salt in My Soul. An Unfinished Life

July 14, 2019 10:24 - 38 minutes - 40.8 MB

Mallory Smith lived and died with Cystic Fibrosis. Mallory wrote, "Salt in My Soul: An Unfinished Life." In this fifteen episode of Young Adults with Complex Conditions, I speak with mother, Diane. Mallory was Captain of her own ship, lived HAPPY, and shares many lessons with us. Heart-warming affirmation! Tragic, tragic, tragic! Blog subscribers: Scroll down through show notes to read the post. If you'd like to listen to the podcast, click here or the title Subscribe to Health Hats, the Po...

But You Can! Total Self-Care at 13

July 07, 2019 14:55 - 36 minutes - 40 MB

Lauren Reimer-Etheridge lives well with a rare condition where her gut can’t absorb nutrition. Incompatible with life, Lauren takes and totally manages all her nutrition through her veins since age 13. In this fourteenth podcast episode in the series about Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care, Lauren talks about her advocacy with parents and young adults: showering, self-management, drugs, sex, and rock and roll. Blog subscribers: Scroll dow...

Been There, Done That. Open Heart.

June 30, 2019 12:45 - 36 minutes - 33.1 MB

MarlaJan Wexler, a registered nurse, supports young people with stories similar to hers: congenital heart defects and open-heart surgeries. In this thirteenth episode in the series about Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care, MarlaJan relates her evolution from child to a person advocating for herself to an advocate for others. She describes the challenge of leveraging her ‘been there, done that’ experience while gauging the readiness of youn...

Breakthrough to College on the Autism Spectrum

June 23, 2019 11:11 - 32 minutes - 26.7 MB

A conversation with Mary Lawler, a trailblazer and educator, supporting young adults on the autism spectrum for success in college. Welcome to this twelfth episode in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care. Blog subscribers: Scroll down through show notes to read the post. If you'd like to listen to the podcast, click here or the title Subscribe to Health Hats, the Podcast, on your favorite podcast player Please suppor...

Time. I Need Some More

June 16, 2019 13:55 - 19 minutes - 16.5 MB

A conversation with Dr. Tanilla Brown, a pediatrician and Internal Medicine doc who thinks about the challenges of enough time with patients, family-focused care, and the lifespan of transition. Welcome to this eleventh episode in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care. Blog subscribers: Scroll down through show notes to read the post. If you'd like to listen to the podcast, click here or the title Subscribe to Health ...

I’m not drug-seeking. I’m in pain.

June 09, 2019 14:46 - 37 minutes - 41.4 MB

This episode concludes the conversations with Fatima Muhammed-Ighile, a mother with two young children, and her mother, Esosa, navigating Sickle Cell Disease. These conversations have been different as Fatima and I are friends. We are familiar with each other's families. We have shared some of life's milestones. In this episode, Fatima finds that she's turning into her mother and describes her experiences as a young mother of color seeking pain relief from a sickle cell crisis as the opiate c...

Good listeners. Good conclusions.

June 02, 2019 12:52 - 26 minutes - 28.4 MB

Esosa Ighile raising young women with Sickle Cell Disease to be commanders of their own ship. The whole family feels the pain of their pain. A fight for health equity. Welcome to this ninth episode in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care. Blog subscribers: Scroll down through show notes to read the post. If you'd like to listen to the podcast, click here or the title Subscribe to Health Hats, the Podcast, on your favo...

Living a Happy, Full Life

May 26, 2019 14:08 - 27 minutes - 24.7 MB

Fatima Muhammed-Ighile learned to advocate for herself and has begun to advocate for others with Sickle Cell Disease. People who have regular lives and struggles and hopes and dreams also have sickle cell disease and are just trying to live a happy life, a happy full life. That's all. Welcome to this eighth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care. Blog subscribers: Scroll down through show notes to read the post. If yo...

Days 6-12 Camino de Santiago. Rejuvenated, inspired, not yet peaked

May 20, 2019 10:19 - 13 minutes - 13.3 MB

I just can't believe how much I'm enjoying just listening to the birds and listening to the wind. It quiets my mind. I know you're shocked to know but I have a very active mind. It just never stops, which works some of the time, if not most of the time. But it's nice to quiet it and just listen. Buen Camino Blog subscribers: Scroll down through show notes to read the post. If you'd like to listen to the podcast, click the title Subscribe to Health Hats, the Podcast, on your favorite podca...

Camino de Santiago. Pilgrimage of sounds.

May 12, 2019 11:56 - 16 minutes - 18.1 MB

I find myself on a pilgrimage. I thought I was tagging along with my wife's hiking group through rural, Northern Spain as a disabled person. But instead, I find myself on a pilgrimage. A pilgrimage of sounds. Buen Camino Blog subscribers: Scroll down through show notes to read the post. If you'd like to listen to the podcast, click the title Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to ...

Sound and noise. Senses and voice.

May 03, 2019 08:49 - 9 minutes - 8.89 MB

Hey there, glad you could join me. I'd like to pause and take stock of the past six months and look a bit to the future. We're in the middle of a series with Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care. I've published 7 episodes in this series. I'm taking a brief break on the series and traveling to Spain. While we're here together I'll look back at the series, talk about Spain, and reflect on my patient/caregiver activism journey. A guest in other...

Raising Me To Be a Good Person

April 28, 2019 13:08 - 34 minutes - 33.9 MB

Morgan and Amy Gleason sound like pretty normal daughter and mom growing out of the self-centered teen years into mutually appreciative adults. In this episode, we’ll hear about that journey toward respect and shared support leavened with humor about the ridiculousness of some of that journey. Welcome to this seventh in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care. Blog subscribers: Scroll down through show notes to read the p...

What is Today, Isn’t Necessarily Tomorrow

April 21, 2019 16:40 - 37 minutes - 33.8 MB

Amy Gleason is Morgan Gleason's mom. We discussed parenting style, cues for calibrating autonomy, the importance of parent support groups, managing depression, self-care, and advocacy by transitioning young adults. Welcome to this sixth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care. Blog subscribers: Scroll down through show notes to read the post. If you'd like to listen to the podcast, click the title Subscribe to Health ...

Finding a Style that Works

April 14, 2019 14:36 - 27 minutes - 25 MB

You're gonna love hearing from Morgan Gleason, already a veteran advocate after making a YouTube video when she was 15 that went viral about her frustrations as a patient in the hospital. Welcome to this fifth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care. Let's jump right in! Blog subscribers: Scroll down through show notes to read the post. If you'd like to listen to the podcast, click the title Subscribe to Health Hats, ...

Building Capacity. Building Power. Citizen Power.

April 06, 2019 16:05 - 8 minutes - 9.99 MB

Capacity for best health ebbs and flows. That's life. Some call citizen capacity - "patient engagement." But that's too weak. Growing and sustaining citizen capacity is citizen power. Our personal and community health depends on it. Four Stories I'm going to tell you four stories: I'm unsteady when tired. I get tired more often. I'm more likely to fall when tired. My capacity diminishes. I resort to mobility aids to increase my capacity. First one cane, then two canes, now occasional wheelc...

Looking Out for Each Other

March 31, 2019 13:57 - 37 minutes - 26.5 MB

Welcome to this fourth in a series about Young Adults with complex medical conditions transitioning from pediatric to adult medical care. This interview with mother and daughter, Alexis and Sara Snyder, exploring their evolving relationship. Transitioning to plans about Sara with Sara. Sara had to know her body well and communicate what she knew. I'm impressed that Sara was pretty clear about what she wasn't clear about. Sara values her mom's health and well-being. Blog subscribers: If you d...

Not one transition. Many.

March 24, 2019 10:53 - 34 minutes - 29.3 MB

Alexis Snyder, a parent of a teenager with chronic complex health issues since birth, shares her journey. She speaks about accepting what is, helping her daughter prepare to manage the many transitions in medical care from infancy to adulthood, the challenges of a siloed medical system, and a fear of losing control of her daughter's health as she let's go of responsibility. Loving, determined, vulnerable. The third interview in a series on Young Adults with Complex Conditions Transitioning fr...

16, Sophomore, All-In

March 17, 2019 14:41 - 27 minutes - 23.4 MB

Welcome to the Health Hats podcast series about young adults transitioning from pediatric to adult medical care. In this series, I interview young adults with complex medical conditions, their parent or guardians, point-of-care clinicians caring for these young adults, and whoever else I find of interest in this fascinating, frustrating, heart-breaking, and inspiring world. This second podcast of the series is with Sara Lorraine Snyder, a fine, eloquent, young woman who has lived her entire ...

Three Young Adults. 22 Years.

March 10, 2019 14:11 - 24 minutes - 19.5 MB

Interview with Jill Woodworth, mother of 4, three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, frustrating, heart-breaking, and inspiring. Silos and boundaries, crossing the threshold, primary physician, autonomy, self-management. One of the scenarios with the most boundaries, cracks, and thresholds is where young adults with complex medical conditions transition from pediatric to adult care. "If there's any communication, that has to g...

Get along. Get it done. Governance

February 24, 2019 13:20 - 9 minutes - 8.92 MB

If your team, organization, the project doesn't seem worth your time or smells fishy, check governance. Change is tough without understanding who makes decisions and how. Activists, professional people, community folks - anyone who's part of a team knows the difference between a well-run team, an effective meeting, and the duds. I first realized the guts of an effective group when my wife and I were invited to join an intentional community (we didn't call it a commune). We retired in our ear...

State of Inclusion. Ame Sanders, Equity Warrior

February 17, 2019 11:36 - 30 minutes - 27.8 MB

It’s everywhere, it’s everywhere. I can’t help but see almost everything I do in my advocacy through the lens of health equity. Whether it’s making decisions about our health and medical care, managing pain, young adults with complex medical issues transitioning from pediatric to adult medicine, men in caregiving, data sharing, patient access to data. Everywhere. I’m defining equity as people having the same opportunity to achieve best physical, mental and spiritual health no matter their so...

Unite to share data for best health

February 10, 2019 16:11 - 7 minutes - 7.58 MB

Data sharing improves health. But it's difficult and unusual. Not sharing leads to error, wasted time, Can we could work together to make data sharing routine? Blog subscribers: If you don't see the podcast player, click the title above. The blog and the podcast are identical this week. Please contribute to my blog and podcast Please help me maintain this ad-free blog and podcast. I appreciate your readership and listener-ship. My blog and podcast will remain free to anyone who subscribes or...

Lessons from the Clowns When Going to the Doctor’s

February 03, 2019 14:23 - 1 hour - 59.1 MB

What can the clowns can teach us as patients and caregivers about relaxing, reading the room, figuring out what you're there to do, and not ending up more stressed than you went in. Maybe even having a bit of fun. In this podcast we will speak with Jason Stewart, a clown at Boston Children's and listen in on a working session I led at the National Caregiving Conference in Chicago this past November, entitled, Reading the Room and Yourself. Lessons We Can Learn from the Clowns When We Go to th...

Setting Personal Health Goals

January 27, 2019 15:05 - 13 minutes - 12.7 MB

Episode Summary We’re going somewhere with our best health journey. Destination: Personal health goals. If you’re well, stay well. If you’re acutely ill, get over it. If you’re chronically ill or dying, live the best life possible. There’s a difference between medical and personal health goals. Onward. Blog subscribers? Don't see a podcast player here? Click the title above. Please contribute to my blog and podcast Please help me maintain this ad-free blog and podcast. I appreciate your read...

Equity: more to achieve the same

January 20, 2019 11:12 - 8 minutes - 8.68 MB

Diversity, equality, and equity are not the same. Diversity = the inclusion of differences. Equality = leveling the playing field. Equity = People have the same opportunity to achieve best physical, mental, and spiritual health no matter their social circumstances, biology, genetics, or physical environment. Bias impacts them all. Reaching for equity requires moving toward systems designed and built for inclusion and best health outcomes. Blog subscribers: If you don't see the podcast player...

Pillow, pills, poop, piss, and pain

January 13, 2019 11:03 - 53 minutes - 50.9 MB

Blood, sweat, tears shared by two. Helping one end and another begin. A disaster that ultimately gives back. Hearts clubbed by diamonds in spades. We learned, we cried, we continued. Episode Summary Denise Brown of caregiving.com asked caregivers for their 6-word story about caregiving. Brilliant! Welcome to Men Caregivers, Part 2, the Panel. Part 1 was interviews with the panel, Ben Carter, Patrick Egan, Jolyon Hallows, and yours truly. All at the National Caregiving Conference in...

Men Caregivers Part 1 Podcast

December 23, 2018 12:21 - 54 minutes - 51.3 MB

Four of 6.4 million men caregivers muse on their varied experience, emotions, challenges, joys. We did it because we wanted to and we could. Great stories! For my blog subscribers: Click here for the podcast player Episode Summary In 1968 the IRS ruled that Charles E. Moritz (Charles E Moritz vs Commissioner of the Internal Revenue Service) was not entitled to a deduction for expenses for the care of his dependent invalid mother. The IRS ruled the deduction was unavailable because he was a...

Healthy Homes Advocacy

December 02, 2018 14:54 - 21 minutes - 5.78 MB

At some point, when we feel strong enough or mad enough, we want to take action to improve health. This is advocacy. Many of us advocate for someone, sometime. Or we want to. Ourselves, our family members, our cronies, our community. What lessons can we learn from a master at advocacy? I interview Mary Sue Schottenfels, Director of ClearCorps Detroit, a seasoned community organizer, a master advocate. The lessons I heard from Mary Sue were: Don't go it alone-join, network, and collaborate....

Trailer: Health Hats, the Podcast

November 28, 2018 16:06 - 1 minute - 1.79 MB

HHP000_Episode Summary Best health is living at peak performance no matter our biology, abilities, or our circumstances. Reaching best physical, mental, and spiritual health is complex, frustrating, frightening, and oh so rewarding. I've worn many hats during my life in healthcare. I'm a person with Multiple Sclerosis, I'm a nurse who's worked in the community, in hospitals, in managed care, and behavioral health. I've been care partner to several family member's end-of-life journeys. I'm a...

Best Health at End of Life

November 16, 2018 21:15 - 30 minutes - 18.1 MB

Episode Summary Best Health includes physical, mental, and spiritual health. Michael Funk, my son, died at age 26 on November 18, 2002, of metastatic melanoma. Mike found his best spiritual health in the last year of his life as he died. As Mike said, I wasn't born with a tattoo telling me how long I had to live. This first episode of Health Hats, the Podcast, celebrates Mike's journey through a montage of an interview with Mike several months before he died, a conversation with Bob Doherty w...