All Posts By

Danny van Leeuwen

Sep 01 2019
1

Crafting Solutions to Conflict

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

Podcast: Play in new window | Download (Duration: 36:52 — 36.1MB) | Embed

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As CEO of our health we manage, we lead, we decide, we learn. In the role of CEO, or as team members for others, we engage in many difficult conversations. These difficult conversations often include sharing information, tracking plans, activities, and symptoms, making decisions, managing circumstances, and adjusting to personalities. We don’t understand. We’re overwhelmed. We can’t decide. Emotions get the best of us. We have trouble listening or caring. The opportunity for conflict between any of our health team seems endless. Learn positive ways to approach conflict with Jane Beddall. Read More

Aug 25 2019
3

Stories, Not Noise, for You – the CEO of Your Health

By | Advocate, ePatient, Informaticist, Podcasts, Uncategorized | No Comments

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Chat with Jan Oldenburg, a nationally recognized thought leader on personal health engagement focused on transforming healthcare and the physician-patient relationship through digital tools. In this podcast episode, we spoke about the language of goals and preferences, situational leadership, making a story from the noise of data, contextual education, and drinking from both ends of a fire hose.

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Aug 18 2019
1

CEO of My Health

By | Advocate, Clinician, ePatient, Leader, Podcasts | One Comment

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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.

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Aug 11 2019
2

Standing on the Shoulders of Giants

By | Advocate, ePatient, Podcasts | One Comment

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Teresa Wright-Johnson is a giant of advocacy. We stand on her shoulders; she stands on ours. “You matter” coming from Teresa is powerful and uplifting.  Teresa is a Multiple Sclerosis Warrior and Congenital Heart Disease Survivor. A retired Parole Officer, Teresa uses her life experiences to inspire and inform others. She’s careful, conscious, and confident. She sets an example and speaks for the unspoken.

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Aug 04 2019
2

Illness-Induced PTSD. Not Only Patients

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

Podcast: Play in new window | Download (Duration: 44:14 — 42.7MB) | Embed

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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.

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Jul 28 2019
0

Pain: The Solution – Many Solutions

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

Podcast: Play in new window | Download (Duration: 1:04:34 — 61.1MB) | Embed

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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.

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Jul 21 2019
3

Fibromyalgia. Managing Pain. Doing the Work.

By | Advocate, ePatient, Podcasts | 3 Comments

Podcast: Play in new window | Download (Duration: 43:08 — 47.1MB) | Embed

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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.

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Jul 14 2019
0

Salt in My Soul. An Unfinished Life

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

Podcast: Play in new window | Download (Duration: 38:56 — 40.8MB) | Embed

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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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Jul 07 2019
1

But You Can! Total Self-Care at 13

By | Advocate, ePatient, Podcasts | 2 Comments

Podcast: Play in new window | Download (Duration: 36:59 — 40.0MB) | Embed

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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.

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Jun 30 2019
1

Been There, Done That. Open Heart.

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

Podcast: Play in new window | Download (Duration: 36:49 — 33.1MB) | Embed

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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.

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