My Spoonie Sisters

Have you ever found a friend in the most unexpected of places? On our latest episode, we're joined by Geri, a beacon of hope from the chronic illness community on Instagram, who opens up about her life with Lupus and Sjogren's syndrome. Her story is a testament to the strength and solace that virtual friendships can provide, especially when real-life connections to those who truly understand are few and far between. We navigate the all-too-common experience of medical gaslighting and the sheer determination needed to pursue a diagnosis, offering a powerful reminder of the resilience within us all.

Imagine conquering not just lupus but also staring down non-Hodgkin's lymphoma without the need for chemotherapy. That's the reality for one incredible New Yorker who shares her experience on our show. She delves into the perks of her healthcare network in the bustling city. She recounts how her robust support system became her lifeline through both her health triumphs and the turbulence of travel post-diagnosis. It's a raw look at the unpredictable nature of chronic illnesses and the immeasurable value of having a solid circle of medical and personal care.

Our closing chapter is packed with practicality and wisdom from our 'Spoonie Toolkit' straight to your ears. We discuss the small yet significant things that make a big difference in managing day-to-day life with a chronic illness, as well as the bigger picture of finding joy and setting goals amidst the challenges. We also shine a light on the support networks that buoy us, like the constant care from loved ones such as Lawrence and organizations like the Lupus Foundation of America. Join us for a heartfelt conversation with a fellow advocate and writer who's on a mission to uplift the lupus community with every word she types and every story she shares.

Everydaylivinglupus | Linktree

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Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

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Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

When Emmanuel's life was touched by the invisible struggles of autoimmune disease within his family, it ignited a fire within him to champion the rights of workers grappling with similar battles. As the founder of the Workers with Autoimmune Aliments Alliance, his story—shared on our latest podcast—encapsulates the drive behind a movement that's not just personal but pivotal for countless individuals. Together, we unravel the complexities of autoimmune diseases in the workplace and the essential legislative strides being made to ensure those affected are no longer unseen or unprotected.

Peek behind the curtain of the "Invisible No More" documentary project with us, where the realities of those living with autoimmune diseases are brought to light. Emmanuel's insight into the stigma and challenges faced by employees with these invisible ailments underscores a pressing need for societal empathy and change. We cover the groundbreaking progress in Maryland with the Employee Autoimmune Disorder Protection Act, and how advocacy efforts are far from over. Lend us your ears and, perhaps, your voice to this cause, as we discuss ways to amplify the mission and ensure no one is forced to choose between their health and their livelihood again.

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Keep your spoons close and support system closer.

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Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

Imagine shouldering the weight of chronic illness while your partner is deployed, leaving you to single-handedly care for children who also navigate their own health complexities. Welcome back Kenzie, the Rare Mom, as we delve into her raw and hopeful narrative of managing mixed connective tissue disease and a blood coagulation defect. As she courageously steps into the role of both mother and medical student, Kenzie unveils the intense reality of parenthood under such unique pressures—chronicling migraines, prolonged bleeding, and the emotional toll it takes. Her journey is a stark reminder of the resilience required to face each day with grace and strength.

Kenzie's love for her son Josiah is a powerful force that shines through the darkest challenges. She opens up about his battle with Familial Cold Autoinflammatory Syndrome and the strikingly sweet yet fiercely independent nature that defines his young spirit. The candid reflections on the paradoxical joys and trials of raising a child with a rare genetic condition, paired with the weighty decisions around family expansion, captivate us with their depth and honesty. Witness the profound growth and resilience Kenzie has fostered throughout her odyssey, a journey marked by love, adversity, and the fierce determination to provide the best for her family.

The heart of this episode beats to the rhythm of advocacy, as Kenzie transitions from law and order aspirations to her pursuit of a nursing career specialized in rheumatology. Her son's health crises and the arduous path to diagnosis illuminate the crucial need for competent and compassionate healthcare providers. We also venture into the broader societal landscape, discussing the judgments and misunderstandings many parents of children with rare diseases and autism encounter. Kenzie's story is an open invitation for connection, support, and resource-sharing, echoing the sentiment that no one facing these trials should walk alone. Join us in a conversation that not only touches the heart but also calls for action and empathy.

https://www.gofundme.com/f/cabrera-family-medical-funds?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer

Makenzie Cabrera (@kenzi.c_) • Instagram photos and videos

https://westchester.news12.com/orange-county-native-raises-awareness-of-familial-cold-autoinflammatory-syndrome-after-toddlers-diagnosis

https://www.tiktok.com/@cabrerafam1?is_from_webapp=1&sender_device=pc

Send us Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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 Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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 Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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 Fan Mail

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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/dp/B08GLGVTVS

Send us Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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 Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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 Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/

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 Fan Mail

Delivering Happy Mail around the world!

We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.

Join our mission to send 100,000 cards of support to patients with long-term illnesses.

About our organization | Cards2warriors

Keep your spoons close and support system closer.

Support the show

Discount Codes:

• https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen20)
• GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off

Website:

• https://myspooniesisters.com/