When Michelle first learned of her daughter Hailey's rare diagnosis, an ultra-rare genetic disorder called Jordan's Syndrome (ppp2r5d), the ground beneath her seemed to shift. Facing the labyrinth of healthcare during the COVID-19 pandemic, she became a beacon of resilience, her story a mosaic of love, adversity, and unwavering determination. Join us as we unravel Michelle's compelling narrative, revealing the raw and intricate journey of parenting a child with special needs. From adapting to virtual medical appointments to decoding a symphony of new allergies, Michelle's candid reflections offer a deep dive into the realities that shape the world of 'spoonies'—those remarkable individuals and families who navigate life with chronic illness.

Our exchange with Michelle transcends the personal and taps into the universal—the strength found in community and the solace in shared experiences. As she opens up about her therapeutic escape through blogging and the sanctuary of support networks, we are reminded that no one walks this path alone. Our conversation promises not just to touch your heart but to forge a connection, extending a virtual hand to all those who might find themselves in the echoes of Michelle's journey. This episode is a testament to the power of storytelling, advocacy, and the unspoken bond that links us all in times of uncertainty and hope.

Be sure to check out @mamabearfor rare on all social media platforms (Facebook, Instagram, TikTok) and her website and blog at mamabearforrare.com

Links to all mentioned in this episode:

https://www.instagram.com/mamabearforrare?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==

https://jordansguardianangels.org/

https://effieparks.com/

https://www.instagram.com/extraluckymoms?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==

https://www.instagram.com/findyourrare?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==

Send us a text

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

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/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

As the sun sets on another day of managing the delicate balance of chronic illness, I sat down with Jess Hay, a resilient "Spoonie Sister" who graciously opened up about her life woven with challenges and triumphs. Our intimate conversation traverses Jess's early health struggles to her current dance with multiple conditions, including celiac disease and POTS. She candidly discusses the tapestry of treatments, both conventional and holistic, that color her daily life and offers an honest look into the complexities of navigating the Canadian healthcare system, where she often plays the role of her own advocate amidst a sea of specialists.

Navigating life with chronic illness is like sailing on unpredictable seas, and Jess shares her strategies for staying afloat, including her reliance on the unsung hero Gravol, and how she balances medications with the rhythms of her body's needs. She extends a hand to those on similar journeys, imparting wisdom on self-compassion and the delicate art of living within the bounds of one’s fluctuating health. Jess's reflections on her journey toward trusting the medical process, despite the jarring realities of nerve tests and other procedures, highlight the courage found in vulnerability and the strength in seeking help.

In the spirit of finding joy amidst the storms, we wrap up with an exploration of the evening rituals and the daily doses of happiness that Jess cherishes—a reminder that life's simple pleasures often hold the greatest comfort. Whether it's the warmth of a crochet needle in hand or the affectionate nuzzle from her service dog in training, Elda, Jess reminds us that support comes in many forms. Listeners will undoubtedly find solace in her story and perhaps recognize a piece of their own journey reflected in her words. Join us for this episode, not just for the resilience on display, but for the celebration of every spoonful of joy that makes the challenging days worth enduring.

https://www.instagram.com/jess_and_elda?igsh=aHRsZGV3a3h5bHE4

https://open.spotify.com/show/2jONwolC02aoGQOxJcTOc5?si=8BMizFi4Tq62E0vLW2jVdA

Send us a text

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

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/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Have you ever felt the weight of the day before it even begins, knowing that each task demands a piece of your already dwindling energy? Embrace the power of the girl with spoons as I, Gracefully Jen, recite a moving poem that captures the essence of living with chronic illness. Through spoken word, we explore the tender narrative of conserving energy, where each spoon symbolizes a precious resource, a unit of strength that must be carefully allocated to overcome the day's hurdles. This episode isn't just a poem—it's an ode to the silent warriors who navigate life's labyrinth with grace and unwavering resilience.

As we journey together, I extend a hand to my spoonie sisters and anyone who understands the intricate dance of managing one's energy against the ever-growing demands of life. My voice is your voice, and as we listen, we find solace in shared experiences and the unspoken understanding that echoes in every line. We celebrate the indomitable spirit that, despite the challenges, rises to meet each dawn with determination. So, gather your spoons, my friends, and let's honor the courage that fuels our every move and remember that we are never alone in this fight.

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/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Have you ever met someone whose sheer presence, both physical and metaphorical, can fill a room with inspiration? Terry Tucker, a former NCAA Division I basketball player turned SWAT hostage negotiator, embodies just that. Balancing on the towering height of six-foot-eight, Terry walks us through the valleys of his life, including his battle with a rare form of cancer, and how these experiences have fueled his mission to inspire others through Motivational Check LLC and his book "Sustainable Excellence." As you tune in, prepare to be awed by his resilience and the infectious optimism that he maintains in the face of adversity.

Throughout our conversation, Terry introduces us to the four pillars that have been the bedrock of his extraordinary journey. Each one, from mastering the mind to understanding the paradoxical gift of pain, is a chapter in his playbook for life. His philosophies aren't just theories; they're born from the trenches of real-world challenges and the relentless pursuit of excellence, despite the odds. Terry’s unwavering spirit not only captivates but also grounds us in the reality that our legacies are carved by the perseverance and hope we hold onto during our toughest battles.

The power of a support network cannot be overstated, and Terry is a testament to that. With his three Fs—faith, family, and friends—as his backbone, he shares heart-wrenching moments, like the decision to undergo chemotherapy and the warmth of human connection that carried him through. His insights into the role of character, the essence of teamwork learned through sports, and the profound lessons from his commitment to clinical trials offer a raw take on what it means to contribute to something larger than oneself. Through his stories, Terry's voice becomes a beacon for all who seek to nurture the eternal parts of themselves—their heart, mind, and soul. Join us as we share in the remarkable resilience of a man who finds an unwavering strength even in moments of vulnerability.

Motivational Check: https://www.motivationalcheck.com/
LinkedIn:  https://www.linkedin.com/in/terry-tucker-9b5605179/
Facebook:  https://www.facebook.com/motivationalcheck
X (Twitter):  https://mobile.twitter.com/terrytucker201
Instagram:  https://www.instagram.com/sustainableexcellenceauthor/
Sustainable Excellence, Ten Principles to Leading Your Uncommon and Extraordinary Life - Amazon
Link: https://www.amazon.com/d

Send us a text

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

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/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

When Tiffany Kairos was just 16, her life took an unexpected turn with the onset of epilepsy, a journey that taught her how to find humor in the face of adversity. Join us as Tiffany, founder of the Epilepsy Network, shares her transformative tale from confusion to advocacy, infusing each challenge with a dose of laughter. In our heartfelt conversation, we uncover the realities of living with epilepsy, from addressing the stigmas to embracing the power of a united community. Tiffany's inspiring outlook isn't just a personal triumph; it lights the path for others navigating the complexities of this condition, proving that a little humor can go a long way.

This episode is more than just a story; it's a guidebook filled with nuggets of wisdom for anyone touched by chronic illness. We unpack the 'spoonie' toolkit essentials, highlighting the significance of rest and the simple pleasures that uplift the spirit, like indulging in dark chocolate. Tiffany also shares her aspirations for the future, from continuing  advocacy through speaking events to possibly venturing into comedy, always with the aim of contributing positively to the epilepsy community. Tune in for an episode brimming with resources, resilience, and reminders of how we can all make a difference.

Send us a text

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

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/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Discover the unmasked realities of lupus with Amanda Chay, the brave voice behind the Girlfriend's Guide to Lupus, in an episode that's as heartfelt as it is insightful. Amanda doesn't just share her story; she opens the door to a world where autoimmune challenges are the norm, not the exception. From her own two-decade struggle to a diagnosis and the emotional rollercoaster that ensued to practical advice wrapped in humor, this conversation is an intimate exploration of resilience and self-advocacy.

Navigating life with lupus is no stroll in the park, and Amanda's candid accounts of managing energy, handling flare-ups, and the complexities of the healthcare system underscore the daily battles faced by those with chronic illnesses. Yet, amid the trials, we find moments of levity and a treasure trove of strategies for anyone walking a similar path. The power of a supportive community emerges as a beacon of hope, with pragmatic tips on building your own "squad" and facing those inadvertently insensitive comments with a touch of witty repartee.

Wrapping up with a stirring message of empowerment, Amanda illuminates the journey from identifying with an illness to embracing the full spectrum of self. We unpack the myth of 'hidden secrets' to managing lupus, advocating instead for the potency of small, consistent daily choices. This is not just an episode for those with lupus but a call to all who seek the courage found in self-acceptance and the transformative impact of understanding one's true identity. Join us for this enlightening dialogue and find out how to connect with Amanda and her powerful guide for navigating the turbulent waters of life with lupus.

Amazon: https://www.amazon.com/Girlfriends-Guide-Lupus-Control-Diagnosis/dp/B0CK3M4VVZ

Instagram:  @amandaechay
Website:  amandachay.com

Send us a text

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

🎙 Living with a rare disease or chronic illness can feel isolating—but you are not alone. Find Your Rare is more than just a brand—it’s a movement. From empowering apparel to real, raw conversations, they’re here to remind you that your story matters. Because being RARE its your superpower. Explore, join & wear your rare with pride at FindYourRare.com

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/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

What if you could transform your life's greatest struggles into sources of strength and self-love? This episode brings you an inspiring conversation with Dr. Fanny Le Boulanger, a French doctor and sex coach who did exactly that, following her epilepsy diagnosis at the age of 26. Dr. Fanny opens her heart about how she navigated the challenges of seizures, medication, and their impact on her relationships, eventually finding peace and self-acceptance. She reminds us of the transformative power of nurturing oneself, stepping away from the hustle, and embracing the beauty of self-love.

Ever wondered how you could find pleasure and comfort amidst chronic pain or illness? Dr. Fanny is back with more enlightening insights, sharing how she discovered joy in the simplest of things. Together, we explore the art of self-soothing, connecting to our senses, and the therapeutic power of a silly song. Dr. Fanny even shares her top three coping tools - skin-friendly oils, positive affirmations, and, of course, that mood-lifting melody. We end the episode on a hopeful note, making sure you remember that it's okay not to be okay and that you're never alone in your journey. So, join us, and let's embrace the healing power of self-care and acceptance together.

Bio : Lifegasm Fairy Godmother and creatrix of Your Sexyfied Life podcast  After years of working as a doctor helping women, she noticed something was missing… She decided to use her skills to help people fall in love again with their sexuality, stop their inner-war and come home to themselves. With a coaching methodology combining ancient wisdom and up-to-date scientific tools, a bilingual podcast and a French sense of humor, she dedicates her life to helping people build their own Sexyfied life. To reclaim the Lifegasm they deserve.

Links : 

• Your Sexyfied Life on your favorite podcast platform (or https://feeds.captivate.fm/your-sexyfied-life/ )
  
  
• Get the Essence free ebook https://view.flodesk.com/pages/63762fafc6d1c43fb3bac1bf**
• Get on my email list : https://view.flodesk.com/pages/649da546a6be29330ccbaa59**
• www.fannyleboulanger.com
  
  
• IG : @withdoctorfanny (but for real, get on my email list if you want to stay in touch, I have a love-hate relationship with Instagram )

Send us a text

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

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/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Ever wondered how you can take control of your health while living with an autoimmune disease? Our special guest, Amy Behimer, is a Doctor of Pharmacy and Nationally Board-Certified Health and Wellness Coach who lives with multiple sclerosis. She uses her education, training, and first-hand experience navigating life with autoimmune disease to help people make changes to start creating autoimmune health. Changes to lifestyle habits are proven to help you feel better today and also help you worry less about tomorrow. She supports people through coaching, teaching, and cultivating community inside her membership CLUB Habit Hub.

Amy discusses the power of mindset, how she evolved her treatment plan to incorporate medication and lifestyle changes, and the importance of understanding the science behind these decisions. Amy's story is a powerful testament to the tenacity of the human spirit and how knowledge mixed with self-care can lead to better chronic illness management.

The mystery of what 'healthy eating' truly means, especially for those with autoimmune diseases, is a topic we dissect with Amy. We address the need to trust our bodies and the importance of shunning ultra-processed foods. Amy shares her unique four "S" approach: understanding the science, trusting oneself, having strategies, and seeking support. This episode will not just educate but inspire you to take small steps towards a healthier lifestyle; whether you're living with an autoimmune disease or know someone who is, Amy's insights and encouragement are not to be missed.

Check out www.amybehimercoaching.com/join to see the details you need to decide if CLUB Habit Hub is your new home for making health a habit!

And here’s a free gift - The 6 Key Habits for Feeling Better with Autoimmune Disease…Starting Today! https://amybehimercoaching.com/6-habits 

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/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Navigating a chronic disease like rheumatoid arthritis can feel like trekking through a dense forest with no map. But what if we told you that there's a way to cut through the thickets, make sense of the path, and move forward with purpose and optimism? Join us for an enlightening conversation with Stefanie, a family nurse practitioner, and rheumatoid arthritis coach who helps her clients do just that. With her guidance, we explore the complex impact of this inflammatory disease on the body and learn about her unique approach to coaching.

Listen as we recount the transformative adventures of Stefanie's clients, like the brave soul who overcame her fear of injections and the career woman who successfully balanced her professional life with her chronic illness. We share stories of individuals who, with personalized support and the right strategies, have navigated the deep waters of rheumatoid arthritis. From reversing a misdiagnosis to transitioning to Medicare while managing their condition, these stories offer a beacon of hope and demonstrate the power of having a guide by your side.

This journey may be challenging, but you don't have to go it alone. We share practical advice, tips, and resources to help you live a full and fulfilling life despite your arthritis. We also emphasize the importance of seeking and accepting help — from talk therapy and support groups to personalized coaching services like Stefanie's. Remember: the sun always rises, and there's always a way forward. So, join us, grab your metaphorical hiking boots, and let's chart your path through the forest together.

Rheumatoid Arthritis Coach | RA Health Coaching & Life Coaching Services

Send us a text

Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.

Let's Get Started - Rare Patient Voice

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/

Discount Codes:

GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Navigating the unpredictable world of invisible illnesses? Take heart. This episode of My Spoonie  Sisters is a beacon of hope, promising an enlightening journey into the crux of mental health and its profound impact on our lives. Your host, Gracefully Jen, dives into the importance of mental well-being, its role in emotional resilience, coping mechanisms, physical health, quality of life, and much more. We reveal how a strong mental health foundation can empower you to deal with uncertainties, express your needs, and advocate for yourself effectively within the healthcare system.

The conversation doesn't stop there. We uncover the power of mental resilience in combating societal stigmas and the key role of mental health in making informed decisions about treatment options, lifestyle choices, and daily activities. The episode also sheds light on how prioritizing mental health can curtail feelings of isolation and foster holistic healing. By highlighting the significance of a supportive network, we underline the role of mental health in forging strong social connections, especially when facing the unique challenges of invisible illnesses. Remember, mental health is not a luxury—it's a necessity. So, tune in, and let's navigate this journey together. And don't forget your spoon!

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/