Category

Caregiver

Salt in My Soul. An Unfinished Life

By | Advocate, Caregiver, ePatient, Podcasts | No Comments

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!

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Breakthrough to College on the Autism Spectrum

By | Advocate, Caregiver, ePatient, Podcasts | No Comments

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.

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I’m not drug-seeking. I’m in pain.

By | Advocate, Caregiver, ePatient, Podcasts | No Comments

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 crisis heats up. Hang on.

Welcome to this tenth episode in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.

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Good listeners. Good conclusions.

By | Advocate, Caregiver, ePatient, Podcasts | One Comment

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.

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Raising Me To Be a Good Person

By | Advocate, Caregiver, ePatient, Podcasts | No Comments

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.

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Building Capacity. Building Power. Citizen Power.

By | Advocate, Caregiver, Consumer, ePatient, Leader, Podcasts | 3 Comments

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.
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Not one transition. Many.

By | Advocate, Caregiver, ePatient | No Comments

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 from Pediatric to Adults Medical Care. Read More

Three Young Adults. 22 Years.

By | Advocate, Caregiver, Podcasts, Uncategorized | No Comments

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 go through me. Unfortunately, I have to network that system and that’s just really cumbersome.” “I can also help other people that have questions about how to transition. I’m certainly not an expert. But boy, it is something that I wish I always say do it the earlier the better. The earlier you can think about it the better.” “He’s learning. Like I taught him to get his own meds, you know, it’s kind of meeting each one of them where they are and what they can do. But it’s hard.” Read More

Special edition for blog subscribers only

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist, Leader, Musician, Researcher | One Comment

Health Hats, The Blog is changing. I’m the same 2-legged white man of privilege, living in a food oasis, who can afford many hats, as I was a couple of months ago. But my advocacy, ministry, channel are changing.  I fell into this podcasting fellowship and here I am a podcaster, too. I’m having a blast. Loving the sound medium. The blog has been a mouthpiece for me. I tested the limits of showing how full of myself I can be. And it allowed me to think out loud.

You are my loyal audience. I write and produce for you. I start with a germ that’s mine. A question, an idea, an initiative I want to think through. Then I go to it with you in mind.  I ask myself, why should you care about whatever? It’s important to me, why do I think it should be important to you? As I write or produce, the germ sprouts, grows into something unexpected, almost all the time.  I’m amazed.

The thing about blogging is that’s almost always one-way. I average 1.3 comments per blog post over 6+ years. I’m getting a bit tired of myself. There’s so much about which I know enough to be dangerous. Podcasting can be a two-way street. Me learning about what interests me. I also recognize that some people like to read, others like to listen, and still others like to watch. So, I’m trying to develop all three media: blog, podcast, YouTube videos.

I’m part of a podcasting fellowship: eight weeks of daily coursework with 300 other budding podcasters from all over the world. We created a supportive community during the course. Now that it’s over, over 100 of us are still engaging, sharing, cheerleading, learning together. A model virtual community (I smell another blog post). I’m a budding sound engineer, producer, and interviewer. I added transcripts for readers and deaf folk. Be still my beating heart. Already, I’ve had an ode to my boy, Mike Funk, met men in caregiving, channeled clowns in the doctors office, explored health equity. I’m working on a series about young adults transitioning from pediatric to adult medicine from the young adult and parent perspective, and conceiving a series about pain management.

But I never asked you if this change to blogging plus podcasting was OK with you, what you think of it, or for your constructive criticism. This is me asking you now.

  • How do you like this transition and change I’m making?
  • Do you listen to the podcast? Read the show notes?
  • Do you still find the blog posts, show notes, written stuff valuable?
  • What do you think about the topics, the guests, the music, the quality of sound, the noise?
  • How about the length? It’s ranged from 20 to 68 minutes.
  • I’m using my cousin’s Joey van Leeuwen’s music. Isn’t he great!?

I was going to send you a survey, but I’d rather just hear from you. I’m eager for observations, atta boys, I’m outta heres, creative ideas, topic ideas, interviewees?

Talk to me, please. Email me at danny@health-hats.com!

And thank you for your loyalty.  Weekly for six years, OMG! We’ve been together a long time in blog years. Onward!