Chat with Sara Lorraine Snyder: ‘As a person living with a disability, we’re already used to the world being able to hurt us or bring us down, whether from other people judging or saying things or your body being funky and doing not behaving in an optimal way. Just knowing that now there’s something, especially for people like me living with lung conditions and whatnot that there’s something that can very well take us out if it so pleased.’
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.
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.
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.
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.
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.
Fatima Muhammed-Ighile learned to advocate for herself and has begun to advocate for others with Sickle Cell Disease. People who have regular lives and struggles and hopes and dreams also have sickle cell disease and are just trying to live a happy life, a happy full life. That’s all. Welcome to this eighth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.