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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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/

What if embracing your vulnerabilities could become your greatest strength? Join us for an enlightening conversation with Jake Mayers, a Lyme coach who has turned his chronic illness journey into a pathway for helping others. From dealing with dyslexia as a child to confronting the harsh realities of a Lyme disease diagnosis at 15, Jake's story is one of resilience and creativity. He shares how he balanced the fatigue and neurological symptoms of his illness with his passions for drumming and filmmaking, and the pivotal shift he made towards prioritizing self-care and rest.

Jake emphasizes the crucial role of tuning into your body’s signals and trusting your intuition, especially when traditional medical advice falls short. His anecdotes reveal the transformative power of self-advocacy and persistence in seeking the right diagnosis and treatments. We'll highlight practical techniques like mindfulness, tai chi, and qigong to help calm both mind and body, and discuss the emotional challenges of hiding an illness versus the empowerment of sharing your journey.

The episode concludes with a powerful discussion on the importance of community support. Jake introduces us to valuable resources like Spoonie Sisters and Cabana, and the concept of "Best Friend Advice" (BFA) to foster self-compassion. Listen as Jake’s insights offer practical strategies for managing chronic illness while finding strength in vulnerability and community. Whether you’re navigating your own health challenges or supporting someone who is, this episode provides a rich tapestry of advice and inspiration.

Instagram: https://www.instagram.com/jakemayerscoaching/

Complimentary Consultation: https://calendly.com/jakemayerscoaching/lyme-support-consultation

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/

Could you imagine enduring years of chronic pain, only to discover it was more than just "growing pains"? Meet Kait, our remarkable guest who shared her compelling journey from a passionate marathon runner to navigating a labyrinth of medical challenges. From femoral acetabular impingement to labral tears, Kait opens up about her painful experiences that began at the young age of 13 and escalated through her college years. In a candid conversation, she recounts her difficult first surgery, marked by complications and a surgeon's lack of empathy, and how self-advocacy led her to a successful second surgery with a more compassionate professional. Kait's story highlights the importance of finding the right healthcare provider and advocating for oneself.

Our discussion takes a deeper turn as Kait reveals her struggle with miserable malalignment syndrome, a rare condition that significantly impacted her life. Thanks to the support of online communities and thorough research, she eventually found the right diagnosis and treatment options, ranging from braces and injections to extensive surgeries. Kait speaks about the added complexity of hypermobility and the potential diagnosis of Ehlers-Danlos syndrome (EDS), stressing the importance of understanding one’s body and seeking proper medical advice. Her journey underscores the necessity of community support and the role it played in her path to better health.

But it's not all about struggles and surgeries. Kait shares how she finds joy amidst adversity, from traveling and enjoying soccer games to the therapeutic benefits of equine therapy. Her love for cooking healthy meals and the simple pleasures of being a morning person brings a refreshing light to the conversation. We explore how equine therapy has aided in her healing and enriched her career in occupational therapy. Kate’s experience is a testament to resilience, the power of supportive healthcare, and finding happiness even in the face of life's greatest challenges. Join us for an inspiring episode that reminds us of the incredible strength of the human spirit.

https://www.instagram.com/alignedk8?igsh=cTduNXpzcGp2aDI1

https://linktr.ee/alignedk8

https://podcasts.apple.com/us/podcast/major-pain/id1562947550?i=1000651266944

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/

Walking into my first rheumatology appointment back in 2011 was overwhelming, but looking back, the right preparation made all the difference. This episode is your guide to navigating the often confusing world of autoinflammatory arthritis. We discuss the crucial elements of your first rheumatology visit, from bringing a detailed medical history to understanding the importance of a thorough physical examination. Discover how patience is key in the complex journey of finding the right treatment, and learn essential management strategies for long-term conditions like rheumatoid arthritis.

We also equip you with five critical questions to ask your rheumatologist to ensure clarity on your diagnosis, treatment options, and lifestyle changes that can support your health journey. You'll gain insights into monitoring your progress and understanding potential side effects of medications, including disease-modifying drugs and biologics. With this comprehensive overview, you'll be prepared to weigh the benefits and risks of your treatment plan confidently. As your Spoonie Sisters, we're here to support you every step of the way, ensuring you never feel lost or confused on your journey toward better health.

Send us a text

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/

What if a childhood filled with unexplained symptoms could finally find clarity years later? In this emotional and powerful episode, we journey with Jodi as she takes us through the highs and lows of her lupus diagnosis. From the age of four, Jodi's life was a whirlwind of mysterious rashes, fatigue, and pain. It wasn't until she was 13, with the help of the dedicated rheumatology team at SickKids in Toronto, that her family’s relentless quest for answers finally bore fruit. Jodi shares how her parents' fierce advocacy and the support of persistent healthcare professionals made all the difference, turning confusion into understanding and hope.

In an inspiring discussion, we explore the creation of "Fabulupus," a groundbreaking book written by two young adults with lupus. This crucial resource aims to help young people navigate the complexities of living with chronic health conditions. We delve into the practical advice the book offers on relationships, education, and workplace rights. Jodi and I exchange thoughts on the importance of personal stories in guiding others, and we provide tips for aspiring authors looking to make an impact in the chronic illness community. The chapter underscores the power of support groups and connecting with relevant organizations to foster a sense of belonging and shared experience.

Our conversation also highlights strategies for managing lupus day-to-day. Jodi emphasizes the significance of mindfulness, self-care, and building relationships with consistent healthcare providers. From breathing exercises to using practical gadgets like automatic can openers and sit-to-stand desks, we discuss tools that can simplify life with lupus. We wrap up by reflecting on how living with a chronic condition shapes one's perspective, encouraging listeners to embrace their unique journeys with grace and self-compassion. Join us for an episode filled with heartfelt stories, valuable insights, and a celebration of resilience.

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/

Imagine enduring years of unexplained fatigue, tendonitis, and carpal tunnel, only to find out these symptoms were just the tip of the iceberg. Join us as Stasha shares her enlightening journey to a rheumatoid arthritis diagnosis, revealing the red flags she overlooked and how a rheumatologist finally brought clarity to her persistent health issues. Discover her tips for managing RA, from biologics and physical therapy to lifestyle changes like staying hydrated and incorporating natural anti-inflammatories such as green tea, peppermint, and cannabis. It's a story of self-advocacy and finding the right medical support to lead a healthier life.

In another chapter, we recount our recent meetup in Colorado, where self-advocacy and effective travel management took center stage. As part of the Impact Action Council and Rheum Champion Stasha was excited to attend the Rheumatology Research Foundation Investigators meeting. Stasha and I discuss the significance of connecting with caring specialists and the invaluable experiences gained at conferences filled with intelligent and compassionate professionals. You'll hear about the joy of creating and sharing content that resonates with our health journeys. Finally, we emphasize the importance of embracing small victories, like managing household tasks, to improve overall well-being. Join us as we celebrate incremental progress and self-compassion, and learn how to connect with Stasha for ongoing support and insights.

http://www.tenaciousme.org/
You can find Stasha on Facebook and Instagram @tenaciousinme

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/