Jul 14 2019
0

Salt in My Soul. An Unfinished Life

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

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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 | One Comment

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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Jun 23 2019
1

Breakthrough to College on the Autism Spectrum

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

Podcast: Play in new window | Download (Duration: 32:39 — 26.7MB) | Embed

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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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Jun 16 2019
0

Time. I Need Some More

By | Advocate, Clinician, Podcasts | No Comments

Podcast: Play in new window | Download (Duration: 19:03 — 16.5MB) | Embed

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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.

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Jun 09 2019
1

I’m not drug-seeking. I’m in pain.

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

Podcast: Play in new window | Download (Duration: 37:06 — 41.4MB) | Embed

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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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Jun 02 2019
1

Good listeners. Good conclusions.

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

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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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May 26 2019
0

Living a Happy, Full Life

By | Advocate, ePatient, Podcasts | No Comments

Podcast: Play in new window | Download (Duration: 27:56 — 24.7MB) | Embed

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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.

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May 20 2019
0

Days 6-12 Camino de Santiago. Rejuvenated, inspired, not yet peaked

By | ePatient, Family man, Podcasts | One Comment

Podcast: Play in new window | Download (Duration: 13:22 — 13.3MB) | Embed

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I just can’t believe how much I’m enjoying just listening to the birds and listening to the wind.  It quiets my mind. I know you’re shocked to know but I have a very active mind. It just never stops, which works some of the time, if not most of the time.  But it’s nice to quiet it and just listen. Buen Camino

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May 12 2019
2

Camino de Santiago. Pilgrimage of sounds.

By | Advocate, ePatient, Family man, Podcasts | 2 Comments

Podcast: Play in new window | Download (Duration: 16:36 — 18.1MB) | Embed

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I find myself on a pilgrimage. I thought I was tagging along with my wife’s hiking group through rural, Northern Spain as a disabled person. But instead, I find myself on a pilgrimage. A pilgrimage of sounds. Buen Camino

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