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PODCAST

My Spoonie Sisters

Welcome to My Spoonie Sisters! If you"re wondering what a "Spoonie" is, it’s a term lovingly embraced by those living with chronic illnesses, based on the Spoon Theory. It’s all about managing our limited energy (or “spoons”) while navigating life’s challenges.Each week, join us to hear from your "Spoonie Sisters" host, co-hosts, and our inspiring special guests as we share real-life stories, tips, and encouragement. Whether you"re here to learn, connect, or feel less alone, you’ll find a supportive

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All Episodes

50:49

A Mother's Advocacy in the Face of Linspad Syndrome

My Spoonie Sisters ·

2025/02/28

Kim, a passionate advocate and mother, shares her incredible journey of adopting two daughters, one of whom faces the challenges of an ultra-rare brain condition known as Linspad syndrome. Through personal trials and triumphs, Kim has emerged as a formidable voice in the advocacy space, particularly with her work at the Child Neurology Foundation. Explore how Kim has become a beacon of hope, leveraging her unique experiences to connect families with crucial resources and create a supportive c...

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30:40

Battling Cushing's: Jewel’s Journey

My Spoonie Sisters ·

2025/02/23

What happens when a determined spirit meets a daunting diagnosis? Join us as we hear from Jewel Dukes, who courageously shares her battle with Cushing's disease. Discover the emotional rollercoaster she faced, from the challenges of weight gain, depression, and anxiety to the life-changing brain surgery to remove a tumor from her pituitary gland. Jewel's story is not just about enduring a rare disease; it's about the powerful connection and hope she found within a community that supports and ...

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44:28

Embracing ADHD: From Harlem Globetrotter to...

My Spoonie Sisters ·

2025/02/17

Discover how former Harlem Globetrotters athletic trainer turned business coach, Michael Dickey, unravels his personal journey with ADHD—a revelation sparked by his son's experiences. Despite initial pushbacks from healthcare professionals, Michael sought a diagnosis that ultimately shed light on the struggles he faced throughout his career and life. His story is both enlightening and empowering as we uncover how recognizing and embracing ADHD can transform not just personal lives but also en...

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34:18

Stacey a Voice Behind Rare Patient Voice

My Spoonie Sisters ·

2025/02/10

From the heart-wrenching journey of a mother's advocacy to the personal battles with chronic illness, Stacey Haynes's story promises to move and inspire you. We sat down with Stacey, a leading voice in the chronic illness community, to explore her transformative path—from her daughter Iris’s diagnosis of Crohn's disease at a young age to Stacey's own diagnosis of thyroid cancer. Stacey opens up about how these experiences led her to work with Rare Patient Voice, an organization that connects ...

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44:31

Elevator Pitches from your Spoonie Sisters

My Spoonie Sisters ·

2025/02/07

Crafting the perfect elevator pitch isn't just for business moguls—it's a vital tool for anyone navigating life with a chronic illness. Imagine being able to communicate the essence of your health journey in just a few sentences. That's exactly what our latest episode explores, featuring remarkable insights from Jen, Ali, Andi, Linnea, and Megan. Ali inspires us with her journey as a personal trainer who did not let juvenile rheumatoid arthritis slow her down. Andi, who is both blind and deaf...

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55:55

EXPOSED: You Can’t Heal When You Hide

My Spoonie Sisters ·

2025/02/03

*TRIGGER WARNING* violence, sexual abuse, and suicide Serena's journey is one of extraordinary resilience and transformation. As our guest, she opens up about surviving a traumatic childhood filled with unimaginable challenges, including abuse and life in witness protection. Her unwavering determination to reconnect with her mother amidst adversity is a powerful testament to the strength of familial bonds. Facing the trials of homelessness and addiction, Serena's story sheds light on the cr...

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26:23

Spoonie Chats

My Spoonie Sisters ·

2025/01/31

Ever wondered how innovative tools like trainer chopsticks can transform your daily life with a chronic illness? Join us, your hosts Jen, Ali and Andi, as we share our personal experiences navigating these challenges and discuss the inspiring lifestyle of Okinawa, Japan. Discover the secrets behind their remarkable longevity, from embracing community to pursuing passions that spark joy in everyday life. We reflect on how finding fulfillment in work and fostering a supportive circle can signif...

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47:49

Recognize Me

My Spoonie Sisters ·

2025/01/27

Imagine facing a medical system that dismisses your symptoms and undermines your experiences. Our guest and dedicated advocate for patient empowerment, Anneke, reveals how she tackled this daunting challenge. Her remarkable journey from misdiagnoses such as chronic fatigue syndrome to finally understanding her rare chronic conditions, including adrenal insufficiency, lupus, and Ehlers-Danlos syndrome, exemplifies resilience. Anneke’s story is not just about surviving but thriving, and it serv...

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37:40

Laughing Through Life's Quirks: From Public Spaces to...

My Spoonie Sisters ·

2025/01/24

What gives you the ICK? Ever been trapped in an empty lobby, only to have someone sit right next to you? You're not alone! Join us as we laugh through the relatable quirks of public spaces that drive us all up the wall, from the orchestra of loud eaters to those who park just a smidge too close for comfort. We'll share some of our tried-and-true strategies for staying sane in these situations and laugh about how our childhood food aversions have hilariously done a 180 into our adult favorites...

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42:52

Navigating Anxiety with Humor and Self-Care

My Spoonie Sisters ·

2025/01/19

Transform your approach to anxiety and personal growth with insights from Andi Byers, a decorated Air Force veteran turned holistic wellness practitioner. Andi & Jen dive in on the My Spoonie Sisters Podcast to share their incredible journeys, the hurdles faced in being recognized for achievements, and the vital role setting boundaries plays in managing anxiety. Andi's ventures, like Chronic and Iconic Coaching, are reshaping the chronic illness and wellness community, offering hope and s...

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56:20

Exploring New Paths to Healing

My Spoonie Sisters ·

2025/01/13

*Trigger Warning* What if your lifelong pain was dismissed as mere imagination? Join us as we explore Riane's powerful narrative of self-advocacy and perseverance in the face of medical doubt. As a Hawaii native, Riane offers an intimate look into her life with juvenile rheumatoid arthritis and chronic migraines, shedding light on how these experiences, along with her grandmother's wisdom, have shaped her path in health and advocacy. Her story is a testament to the resilience needed to ...

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32:31

Helen's Roadmap to Thriving Amidst Diagnosis

My Spoonie Sisters ·

2025/01/06

What happens when your life takes an unexpected turn, and you're faced with navigating the complexities of a chronic illness far from home? Meet Helen, a determined life coach whose journey through an ankylosing spondylitis diagnosis after battling COVID in her late 20s reshaped her world. Tune in as Helen shares her personal story of overcoming the intense physical challenges and emotional upheaval of losing her active lifestyle, all while finding solace in her family's support. Her inspirin...

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47:04

#PlanToBeYourBest with Chronic Pain

My Spoonie Sisters ·

2024/12/30

After years of enduring chronic pain, Rick Cram transformed his life by embracing resilience. His story of overcoming a high school football injury and multiple surgeries will inspire you to rethink how you approach life's challenges. We promise you'll gain valuable insights from his “Plan to Be Your Best” program, designed to build resilience and find purpose despite setbacks.Rick’s journey offers a deep dive into the complexities of chronic pain and the mental fortitude needed to navigate i...

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25:36

Breaking Down Barriers to Medication Access

My Spoonie Sisters ·

2024/12/23

Discover how you can manage the financial strain of chronic illnesses with insights from Laura and Jamie of Universal Drugstore, who join us for a candid discussion on medication affordability. We begin with Laura's heartfelt account of living with juvenile arthritis and how the exorbitant drug prices in the U.S. compare to more affordable international options. Learn about Universal Drugstore’s two-decade commitment to connecting patients with licensed international pharmacies, providing a r...

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20:05

Maggie's Creative Journey with Chronic Illness

My Spoonie Sisters ·

2024/12/16

Maggie Bushway's journey of overcoming brain cancer and navigating life with seizures is nothing short of inspiring. Diagnosed at just seven, she turned her battle into a beacon of hope through storytelling. As she shares her experiences, Maggie reveals how her father's blog posts and her sister's artwork helped her transform her story into a heartfelt book during her chemotherapy treatments. Through sharing her own trials, Maggie sheds light on the struggle of living with a chronic illness, ...

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59:02

Navigating Hydrocephalus: Jeff and Katherine's Story...

My Spoonie Sisters ·

2024/12/09

What if you could recognize early signs of health deterioration before it turns into a crisis? Join us in a conversation with the inspiring couple, Jeff and Catherine Pearson, as they share their remarkable journey navigating life with hydrocephalus. Jeff, who has managed this condition since birth, and Catherine, his devoted caregiver, reveal their story of resilience through multiple surgeries and health challenges. Learn how their nonprofit, Hydro With Hope, and their online initiative, In...

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44:52

Patient-Centered Medicine: Lauren's Journey with...

My Spoonie Sisters ·

2024/12/02

What if your greatest challenges could fuel your passion and shape your life's ambitions? Meet Lauren, a clinical assistant at Boston Children's Hospital, whose journey with Conradi-Hunermann syndrome and nearly 30 orthopedic surgeries has not only defined her path but also her dream of becoming a pediatric orthopedic surgeon. Through her eyes, we gain a profound understanding of the human side of medicine, where patient-centered care and advocacy go hand-in-hand. Lauren candidly shares how h...

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62:57

Chronic Slay

My Spoonie Sisters ·

2024/11/25

After grappling with juvenile idiopathic arthritis since she was just 15, our guest Ali shares her transformative journey from denial to empowerment. Allie's story is one of incredible resilience as she navigates the physical challenges of surgeries and isolation, ultimately finding strength and purpose through movement. As a certified personal trainer, Ali now inspires others with similar limitations, offering hope through her personal experiences and highlighting the critical role of commun...

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35:57

Let's Catch Up Chelsey!

My Spoonie Sisters ·

2024/11/04

Ever wondered how someone navigates the unique challenges of a thriving career in musical theater while dealing with the daily hurdles of a chronic illness? Chelsey, our inspiring guest, shares her remarkable journey from Vancouver to the American Musical and Dramatic Academy and how she's now making a difference as the Associate Director of Musical Theater at the 92nd Street Y in New York City. Diagnosed with rheumatoid arthritis in 2020, Chelsey didn't let her condition define her; instead,...

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37:36

Lupus to Open-Heart Surgery with Victoria

My Spoonie Sisters ·

2024/10/28

Ever wondered how someone can transform adversity into strength? Meet Victoria, a spirited yoga instructor living with lupus, who shares her powerful journey from undiagnosed college student to a wellness advocate in the bustling city of New York. Experience her raw and emotional recount of confronting extreme fatigue, hair loss, and brain fog before finally receiving her life-changing diagnosis. Through her story, you'll understand the critical role her family's support played during her dar...

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174 results

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