Welcome to this fourth in a series about Young Adults with complex medical conditions transitioning from pediatric to adult medical care. This interview with mother and daughter, Alexis and Sara Snyder, exploring their evolving relationship. Transitioning to plans about Sara with Sara. Sara had to know her body well and communicate what she knew. I’m impressed that Sara was pretty clear about what she wasn’t clear about. Sara values her mom’s health and well-being. Read More
Welcome to the Health Hats podcast series about young adults transitioning from pediatric to adult medical care. In this series, I interview young adults with complex medical conditions, their parent or guardians, point-of-care clinicians caring for these young adults, and whoever else I find of interest in this fascinating, frustrating, heart-breaking, and inspiring world.
This second podcast of the series is with Sara Lorraine Snyder, a fine, eloquent, young woman who has lived her entire life with chronic medical issues. She’s learning to drive her own healthcare and manage the transition to adult medical care.
“If you were playing with the team for football or whatever and then they come you come in the next practice and half of your team is completely new people that you don’t even know and then you don’t know how to effectively work with that team so that in the end of the day you can win or like achieve, whatever you need to.” Sara Lorraine Snyder
Interview with Jill Woodworth, mother of 4, three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, frustrating, heart-breaking, and inspiring. Silos and boundaries, crossing the threshold, primary physician, autonomy, self-management. One of the scenarios with the most boundaries, cracks, and thresholds is where young adults with complex medical conditions transition from pediatric to adult care. “If there’s any communication, that has to go through me. Unfortunately, I have to network that system and that’s just really cumbersome.” “I can also help other people that have questions about how to transition. I’m certainly not an expert. But boy, it is something that I wish I always say do it the earlier the better. The earlier you can think about it the better.” “He’s learning. Like I taught him to get his own meds, you know, it’s kind of meeting each one of them where they are and what they can do. But it’s hard.” Read More
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
We’re going somewhere with our best health journey. Destination: Personal health goals. If you’re well, stay well. If you’re acutely ill, get over it. If you’re chronically ill or dying, live the best life possible. There’s a difference between medical and personal health goals. Onward. 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
- Blood, sweat, tears shared by two.
- Helping one end and another begin.
- A disaster that ultimately gives back.
- Hearts clubbed by diamonds in spades.
- We learned, we cried, we continued.
Denise Brown of caregiving.com asked caregivers for their 6-word story about caregiving. Brilliant!
Welcome to Men Caregivers, Part 2, the Panel. Part 1 was interviews with the panel, Ben Carter, Patrick Egan, Jolyon Hallows, and yours truly. All at the National Caregiving Conference in Chicago in November 2018.
Here are some of our 6-word stories:
- We did it because we could
- Pillows, pills, poop, piss, and pain
- 20 years a caregiver. I adapted.
- Key word isn’t ‘men’, it’s ‘caregiving’
- Personal care? It depends? Mother, wife?
- Managing the Dis Ease of Disease