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.
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.
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.
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.
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!
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.
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 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.
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.