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 it. As he shares his experiences — from the chaos of mental storms during daily tasks to the therapeutic power of writing — you'll discover practical strategies for maintaining focus and positivity. Through personal anecdotes, like his own knee replacement, Rick reveals how a shift in mindset can turn fear into opportunity, urging you to listen to your internal dialogue and create strategies to manage overwhelming moments.

This episode also explores the power of community and connection in fostering resilience. Rick emphasizes the importance of teaming up with those who understand your struggles, transforming pain into strength and compassion. By celebrating small victories and putting your greatest strengths into action, you'll learn how to be your best self, even amidst adversity. Join us as we explore these themes and visit rickcram.com for additional resources to guide your resilience journey.

RickCram.com

https://www.facebook.com/rick.cram.3

https://www.instagram.com/rickcram/

https://www.linkedin.com/in/rickcram/

https://www.youtube.com/RickCram21

https://x.com/RickCram

#plantobeyourbest 

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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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Website:
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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 reliable lifeline for those struggling to keep up with the cost of long-term prescriptions.

As safety concerns often arise with international pharmacies, we tackle these head-on with Jamie, Universal Drugstore's in-house pharmacist. With two decades of experience ensuring the safety and quality of medications, Jamie explains their rigorous standards and global sourcing practices to keep patients safe. Plus, we share advancements in drug therapies for autoimmune diseases, providing listeners with the latest options and innovations, including stem cell therapy. You'll hear about my role in making this complex information accessible and understandable for all patients.

We then shift our focus to empowering patients beyond medication, highlighting the importance of accurate medical content and community support. Learn about our collaboration with content and analytics experts to ensure consumer-focused information and the vital role of reliable sources like clinical studies. We encourage tapping into national foundations and local societies for support and invite you to share feedback to help us enhance our services. Universal Drugstore remains dedicated to providing affordable and safe medication solutions while fostering a supportive community for those living with chronic conditions.


URL for the website is: 

https://www.universaldrugstore.com/

Contact: 

Email: [email protected]

Phone: 1-866-456-2456

Instagram: @universaldrugstore

Promo code: JENNI2025, for 15% off your next order.
Link is: https://www.universaldrugstore.com?promotion_code=JENNI2025

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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. 

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/

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, aiming to inspire resilience in others and foster a deeper understanding for those unacquainted with these battles.

Throughout our conversation, we explore how Maggie's health challenges shaped her creative path. From navigating surgeries and treatments to embracing the therapeutic power of writing and filmmaking, her insights are a testament to finding beauty in adversity. Maggie discusses the importance of flexibility and adaptation in pursuing creative careers while managing chronic conditions, offering valuable advice for others on similar journeys. She also teases upcoming projects that focus on resilience, including adapting her memoir into short stories. This episode is a powerful narrative of strength, creativity, and the transformative power of storytelling.

https://www.instagram.com/mkbushway/

https://x.com/maggiebushway

https://www.facebook.com/people/Pearls-A-Memoir-on-Childhood-Brain-Cancer-and-Hope/61562132164153/

https://bsky.app/profile/mkbushway.bsky.social

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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 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, Invisible Condition University, provide vital resources and support for those affected by invisible conditions.

Our discussion takes a deep dive into understanding the critical importance of proactive healthcare and the emotional and financial toll of unexpected medical emergencies. We explore Jeff's experience with sudden brain surgery and the lessons learned about listening to your body and recognizing symptoms early. Catherine shares her invaluable insights as a caregiver, emphasizing the importance of a supportive network. Through personal anecdotes, she illustrates the nuances of differentiating between various types of discomfort and the significance of addressing both physical and emotional needs.

We also explore the Pearsons' passion for fostering community and collaboration in healthcare. By integrating Western and alternative medicine, they advocate for a cooperative approach to care. Their creation of "My Hydro Warrior Story" serves as a testament to the power of storytelling and shared experiences in building a strong support system. Their dedication to empowering families with chronic conditions shines through as they share strategies for balancing family life while navigating the complexities of healthcare. Get ready to be inspired by their unwavering commitment to making a difference in the world of invisible conditions.

To watch our TV show Invisible Condition:
https://watch.e360tv.com/content/sc_29490_16217
Invisible Condition broadcasts LIVE every TUESDAY & FRIDAY at 10:00an MT and is available on demand
on FB & YouTube immediately after the LIVE broadcast has concluded. Available on the e360tv site
about a day later.

Watch Invisible Condition LIVE on Facebook:
https://www.facebook.com/profile.php?id=100091481468419
You can watch the show here and chat with us LIVE during the show)

Watch Invisible Condition LIVE on YouTube:
https://www.youtube.com/@InvisibleCondition/streams
To be considered as a guest for Invisible Condition, schedule a short discovery call with Jeff:
https://api.totalallinonesolutions.com/widget/bookings/invisibleconditiontv

To join our growing community at Invisible Condition University:
www.MyFreeGiftFromJeff.com

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 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 her medical journey has inspired her to educate others about rare diseases and offer the same compassionate care she received.

Ever felt dismissed by a healthcare professional? You're not alone. We recount a personal experience where lack of empathy from a medical specialist led to a crisis of confidence, underscoring the emotional impact of not feeling heard in healthcare. This is a stark reminder of the need for healthcare providers to truly listen and validate their patients' experiences. Compassion and understanding are crucial, as they can make a world of difference in patient trust and partnership.

In a world where patients are more informed than ever, embracing shared decision-making in healthcare is a must. We explore how empowering patients as active participants leads to better outcomes, with strategies like encouraging second opinions and creating accessible resources. Highlighting organizations like Miles for Hips and Beautifully Made Community, we showcase the support available for those with specific medical conditions. It's about fostering resilience, appreciating health, and emphasizing a growth mindset—prioritizing well-being over rigid timelines. Tune in, and let's transform the healthcare experience together.

https://www.instagram.com/lauren.schoeller/profilecard/?igsh=MWJrNWxsZXdlMnNkNQ==

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/

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. 

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 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/