I want to be a better CEO of my health and health team. Better at learning, managing, leading, and deciding. Most of us are only fair at any of it. Few are good at all of it. And our lives depend on them all. Let’s explore this further together in future podcasts. I encourage you to share your questions and thoughts with me.
People who live with long term, complex chronic illness suffer from extreme stress and trauma together and alone. ‘Live with’ meaning they’re my diagnoses or I’m caring for someone with those challenges. ‘Caring for someone’ can be professionals or family and non-family, and sometimes community. The intensity of acute crises, rehabilitation, and maintenance (living life) all cause unforgettable and deep-rooted stress. Crazy-making stress. Illness-induced Post Traumatic Stress Disorder (PTSD). To explore PTSD, I asked Nancy Michaels to join us. She spent 6-months in the ICU, two-months in a coma, with a liver transplant and brain surgery to boot. She most remembers dignity and control or lack thereof. It affected more than her. Listen in.
You’re in for a treat. Amy Baxter, pediatric emergency physician, pain researcher, and device manufacturer, is the CEO and Founder of Pain Care Labs. We talked about:
- Pain is inevitable, it’s life. Unnecessary pain is wasteful and it sucks.
- Doctors’ superpower is writing prescriptions. While lots of research has been done about non-pharm pain, doctors aren’t familiar with it.
- Public policy doesn’t support non-drug solutions. It funnels people to doctors and medication.
- Attitude and attention impact pain. If you focus on life rather than pain, the pain can be more manageable. We’re in control.
- The 1-10 pain scale has limited value unless you’re evaluating what’s not working for acute pain.
- We could teach our kids about pain differently. Think, dancers and other athletes.
- While cannabis may be helpful for chronic pain, it’s not a panacea, especially for young brains.
We learned about TENS units, Buzzy, the Meissner Corpusle, the thalamus (the brains CPU/microprocessor), the Schmidt Sting Pain Scale, the IKEA bias, beta nerves and mechanoreceptors, and more. My head spins.
I think the most important lesson I’ve learned from Amy is that it’s not about the pain, it’s about what we want to do with our lives and how we manage the challenges we face that get in the way, including pain. Let’s take control. It’s the most powerful tool we have.
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 young adults and parents to hear the lessons she’s learned. Finally, MarlaJan opens her heart (so to speak) to her struggles with PTSD and finding compassion for herself.
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.
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 email@example.com!
And thank you for your loyalty. Weekly for six years, OMG! We’ve been together a long time in blog years. Onward!
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 the Doctor’s Office. Lessons from the clowns? Humor, humanity, failure. Reading the room. You are not alone. Read More
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. Read More
As a blogger, I talk. Every week, I talk. I talk about what I experience, what I think, and what I think I know. As my web/social media coach says, “You’re a content machine.” Now that I’ve started podcasting, I realize that I know enough to be dangerous. Podcasting is an opportunity for me to listen and learn. Listening has always been a challenge for me. Read More