Category

Caregiver

Crafting Solutions to Conflict

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

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

Illness-Induced PTSD. Not Only Patients

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

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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Pain: The Solution – Many Solutions

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

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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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