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 community support.

We don't shy away from the harsher realities of life with chronic illness, discussing the emotional weight it carries and the impact on social interactions and personal identity. Through stories of surgical recoveries, mobility aids, and the mental toll of chronic conditions, we explore how essential understanding and empathetic friendships can be. Our conversation also touches upon the scrutiny people face in public spaces, especially as they age or navigate parenting challenges, all while finding humor and confidence along the way.

Social media emerges as both a challenge and a lifeline, with discussions around criticism and the misrepresentation of those with chronic conditions in the media. Despite this, platforms offer a supportive space for sharing and understanding, as illustrated by personal stories of connection and motivation. We reveal how fitness can be adapted to suit individual needs, turning exercise into a communal experience that fosters new dreams and aspirations despite chronic challenges. Join us for an episode filled with personal insights, candid discussions, and the unyielding spirit of those living with chronic illnesses.

Instagram / TikTok / YouTube @anotherdaywithra

Website: www.anotherdaywithra.com

Ali DiGiacomo

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Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

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Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)

Website:
https://myspooniesisters.com/

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, she transformed her journey into a support system for others through her "Immune System Hates Me" podcast and the Rheumatoid Arthritis Warriors support group. Tune in to hear how Chelsey champions the importance of community and support for those living with chronic illnesses.

Through candid reflections, Chelsey discusses overcoming self-imposed barriers and avoiding the catastrophic mindset that often accompanies chronic illness. She emphasizes the support she receives from her colleagues and the nurturing environment that allows her to thrive in both teaching and performing. Learn how Chelsey's passion for musical theater extends beyond the stage as she helps young performers build confidence and find their voice in a creative space that welcomes all. From guiding shy kids to become confident performers to creating a sense of belonging, Chelsey's story is a beautiful testament to the power of the arts in personal development.

Navigating a career in the performing arts while managing a chronic illness is no small feat, but Chelsey shares invaluable insights and practical advice on how to make it work. Listen as she talks about adapting dance routines, understanding personal limitations, and having backup plans like further education. Get a glimpse into her personal life, including her experiences with new medications and maintaining relationships. With heartwarming anecdotes and genuine moments, Chelsey's episode is a heartfelt reminder that authenticity and relatability are key to building a supportive community. Join us for an episode filled with humor, shared experiences, and the special bond with our "spoonies sisters.

Send us a text

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)

Website:
https://myspooniesisters.com/

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 darkest moments and how she found resilience amidst the chaos.

Prepare to be moved by Victoria's tale of survival as she opens up about a life-threatening lupus complication that led to emergency open-heart surgery. She takes us through the heart-pounding discovery of an aneurysm and a tear in her ascending aorta, the urgency of the situation, and the heart-wrenching decision to spend a final weekend with her loved ones before the procedure. This narrative serves as an urgent reminder about the importance of listening to our bodies and seeking timely medical attention to avoid fatal outcomes.

Discover how Victoria found sanctuary in yoga and turned her passion into a support system for others battling chronic illnesses. From adaptable yoga practices to promoting mindfulness and self-love, she shares practical tips and invaluable resources for fellow lupus warriors. Engage with her heartfelt insights on managing chronic illness, the power of community, and staying positive amidst life's unpredictabilities. Let Victoria's inspiring journey empower you to face your challenges head-on and embrace each day with renewed strength.

Website: https://www.victoriagibbsyoga.com/

IG: https://www.instagram.com/whatgibbs?igsh=MW5xbnJ1YmFqb2llMA%3D%3D&utm_source=qr

YouTube: http://www.youtube.com/@whatgibbs

Send us a text

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way.

Support the show

Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)

Website:
https://myspooniesisters.com/