My Spoonie Sisters

Kim, a passionate advocate and mother, shares her incredible journey of adopting two daughters, one of whom faces the challenges of an ultra-rare brain condition known as Linspad syndrome. Through personal trials and triumphs, Kim has emerged as a formidable voice in the advocacy space, particularly with her work at the Child Neurology Foundation. Explore how Kim has become a beacon of hope, leveraging her unique experiences to connect families with crucial resources and create a supportive community, all while emphasizing the importance of clinical trials and the limitations of insurance coverage for breakthrough therapies.

The Child Neurology Foundation's extensive network of 25,000 social service organizations is a lifeline for families navigating neurological conditions. Discover the array of tools and resources offered, such as transition of care toolkits and seizure action plans, aimed at providing comprehensive support. Mental health education for caregivers is a critical component, empowering them with strategies to manage the unique challenges they face. By transcending financial barriers and providing essential services like free flights and accommodations for specialist appointments, the foundation demonstrates its unwavering dedication to each family's journey.

Family involvement in clinical research plays a pivotal role in shaping effective therapies, and Kim's experience on a parent council for a clinical trial underscores this point. The conversation highlights the evolution of decentralized clinical trials, which bring flexibility and engagement by conducting trials in non-traditional settings. The value of building community connections, especially in rural areas, is also examined. By sharing insights and fostering collaboration across various fields, Kim and the Child Neurology Foundation illuminate the path toward impactful, patient-centered treatments, while emphasizing the importance of reaching out for support when needed.

• Email: [email protected]
• Website: https://www.childneurologyfoundation.org/
• Fill out an assistance request form to get support:https://www.childneurologyfoundation.org/family-support/
• Newly Diagnosed? Research your condition in our Disorder Directory: https://www.childneurologyfoundation.org/disorder-directory/
• Links to all socials:
• Instagram: https://www.instagram.com/childneurologyfoundation/
• Facebook: https://www.facebook.com/CNFoundation
• LinkedIn: https://www.linkedin.com/company/child-neurology-foundation/
• Twitter: @Child_Neurology

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 happens when a determined spirit meets a daunting diagnosis? Join us as we hear from Jewel Dukes, who courageously shares her battle with Cushing's disease. Discover the emotional rollercoaster she faced, from the challenges of weight gain, depression, and anxiety to the life-changing brain surgery to remove a tumor from her pituitary gland. Jewel's story is not just about enduring a rare disease; it's about the powerful connection and hope she found within a community that supports and uplifts her.

The path to finding support after a rare disease diagnosis is seldom straightforward. In our conversation, we explore Jewel's journey to connect with those who truly understand her struggles, especially on platforms like Facebook. We dive into the dual challenges of Cushing's disease and Lipoedema, shedding light on the pain and limited treatment options due to insurance obstacles. Jewel shares her wisdom on creating a practical toolkit for symptom management and the necessity of self-care, even when life seems overwhelming.

As we discuss holistic wellness, the episode also highlights the benefits of alternative therapies such as acupuncture and stretching for recovery and performance. We tackle the financial barriers to accessing these therapies and stress the importance of listening to one's body. Moreover, we underscore the need to support our friends who may be silently struggling, and how businesses like Crafted with TLC provide creative outlets and community support. As we gear up for Rare Disease Day, we celebrate the resilience and solidarity that Jewel and others find in shared experiences.

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 how former Harlem Globetrotters athletic trainer turned business coach, Michael Dickey, unravels his personal journey with ADHD—a revelation sparked by his son's experiences. Despite initial pushbacks from healthcare professionals, Michael sought a diagnosis that ultimately shed light on the struggles he faced throughout his career and life. His story is both enlightening and empowering as we uncover how recognizing and embracing ADHD can transform not just personal lives but also entrepreneurial paths, aligning them with inherent strengths and passions.

Join us as we explore the nuanced transition Michael experienced moving from the adrenaline-fueled world of athletic training to a more introspective role of coaching entrepreneurs with ADHD. We discuss the identity shifts faced by those stepping away from dynamic careers due to chronic illness or approaching retirement. Michael shares insights on how to turn these challenges into opportunities, advocating for the importance of self-awareness and leveraging strengths to guide the next generation of athletes and coaches.

In this enlightening episode, we dive into understanding one's unique problem-solving style and conquering executive dysfunction using the conative part of the mind. Learn from Michael about the four action modes that define problem-solving approaches and how to embrace your distinct style to boost productivity and avoid burnout. Tune in for practical strategies on organizing tasks by energy levels and finding balance through joy and extracurricular pursuits, ensuring a successful and fulfilling entrepreneurial journey.

http://flowstateexecutivecoaching.com/?fbclid=PAZXh0bgNhZW0CMTEAAaaxpxM6C0fWX_wSX6LuaCcmZj9QFmrCRwVJmMruYEh3GlzDq-3VBMiGezU_aem_z4nWkY3upyFzSLakjVdeEA

http://flowstateexecutivecoaching.com/retreat/

https://flowstateexecutivecoaching.trafft.com/booking?t=s&uuid=72adfe0e-0b3f-4d99-8f11-6b80159bbd38

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/

From the heart-wrenching journey of a mother's advocacy to the personal battles with chronic illness, Stacey Haynes's story promises to move and inspire you. We sat down with Stacey, a leading voice in the chronic illness community, to explore her transformative path—from her daughter Iris’s diagnosis of Crohn's disease at a young age to Stacey's own diagnosis of thyroid cancer. Stacey opens up about how these experiences led her to work with Rare Patient Voice, an organization that connects patients and caregivers with valuable research opportunities. Her story highlights the significance of community support, both online and offline, and underscores the resilience required to navigate ongoing health challenges.

As we shift our focus to the complex landscape of medical challenges, Stacey bravely shares her experience with thyroid cancer, from the initial diagnosis to the ongoing recovery process. She reflects on the vital role her empathetic family played during her journey. Stacey also talks about the challenges of managing health transitions like perimenopause, providing a candid look at the medical appointments and adjustments that come with it. This conversation also explores how Rare Patient Voice empowers patients and caregivers by facilitating meaningful connections with medical research, highlighting the importance of authentic patient participation in advancing medical science.

In today's digital age, social media has the power to unite and amplify voices, and Stacey's journey demonstrates just that. Through platforms like Instagram and TikTok, she has found a vibrant community that offers solidarity and resources. Stacey also shares insights from Social Sid's advocacy within the HS community, illustrating how relatable content can spark impactful connections. We wrap up with an engaging discussion on the emotional trials parents face when seeking diagnoses for their children, emphasizing the need for determination and trust in one's instincts. Stacey's dedication to amplifying patient voices and building a supportive community is a testament to the transformative power of shared experiences and collective action.

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/

Crafting the perfect elevator pitch isn't just for business moguls—it's a vital tool for anyone navigating life with a chronic illness. Imagine being able to communicate the essence of your health journey in just a few sentences. That's exactly what our latest episode explores, featuring remarkable insights from Jen, Ali, Andi, Linnea, and Megan. Ali inspires us with her journey as a personal trainer who did not let juvenile rheumatoid arthritis slow her down. Andi, who is both blind and deaf on one side, reveals the significance of concise, clear communication with healthcare providers. Meanwhile, Megan, a fitness coach with rheumatoid arthritis, shares how she defies limitations to pursue her passion.

We tackle the often invisible nature of chronic illnesses and the misconceptions they breed. Through poignant anecdotes and actionable strategies, our guests reveal the power of having a strong, succinct narrative to advocate for oneself. From navigating awkward gym encounters to educating others with grace, our conversation showcases the importance of being prepared with a well-crafted story. We even discuss the merits of using creative tools like business cards to reinforce these messages in everyday interactions.

Laughter and resilience take center stage as we discuss how humor can lighten the load of chronic illness. We emphasize self-care through affirmations and the healing power of a supportive community. Sharing personal stories and quotes, we remind listeners that strength and joy can be found within, even amidst life's toughest challenges. By the end of this episode, you'll feel empowered to embrace your journey and equipped with the tools to communicate it effectively, fostering understanding and connection in the process.

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/

*TRIGGER WARNING* violence, sexual abuse, and suicide

Serena's journey is one of extraordinary resilience and transformation. As our guest, she opens up about surviving a traumatic childhood filled with unimaginable challenges, including abuse and life in witness protection. Her unwavering determination to reconnect with her mother amidst adversity is a powerful testament to the strength of familial bonds. Facing the trials of homelessness and addiction, Serena's story sheds light on the critical impact of early trauma and the path to healing through storytelling.

Our conversation moves into the delicate process of healing, highlighting how Serena navigated the shadows of depression and anxiety that once loomed over her life. Drawing from her own experiences, she shares how unhealthy coping mechanisms can take root from deep-seated pain and the importance of embracing the mind-body-spirit connection for true recovery. Serena passionately discusses the liberating power of forgiveness and the contagious nature of positivity, urging listeners to create nurturing environments for themselves and their loved ones.

We also explore the intricate dynamics of betrayal, transparency, and self-preservation. Serena recounts the courage it took to leave toxic relationships marked by manipulation and abuse, emphasizing the importance of self-care and community support. Her journey underscores the necessity of honest communication within families and the critical decision to prioritize one's well-being. By sharing her insights, Serena provides invaluable encouragement to those walking their own paths to healing, inspiring listeners to seek strength from their communities and embrace vulnerability as a catalyst for personal growth.

Author Website: https://serenamastin.com/

Business Website: https://pulsemarketingteam.com/

Author IG: https://www.instagram.com/heartfeltstories2024/

Business IG: https://www.instagram.com/pulse_marketing/

Facebook: https://www.facebook.com/PulseMarketingTeam

LinkedIn: https://www.linkedin.com/in/serenamastin/ 

Amazon: amazon.com/author/serenamastin

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/

Ever wondered how innovative tools like trainer chopsticks can transform your daily life with a chronic illness? Join us, your hosts Jen, Ali and Andi, as we share our personal experiences navigating these challenges and discuss the inspiring lifestyle of Okinawa, Japan. Discover the secrets behind their remarkable longevity, from embracing community to pursuing passions that spark joy in everyday life. We reflect on how finding fulfillment in work and fostering a supportive circle can significantly boost well-being and promote longevity, drawing inspiration from the Okinawan way of living.

Prepare for laughter as we venture into the whimsical world of Giant Microbes. From dopamine and serotonin to the more peculiar mad cow disease and sperm cells, these Giant Microbes offer a humorous twist to gift-giving. We imagine the hilarious reactions they could provoke as earrings. Adding some groove to the mix, we explore the empowering potential of belly dancing. Plus, we’ve got some insights on wellness tracking tech, like the Guava Health App, Whoop band, and Aura Ring, alongside a light critique of social media’s tendency to miss the point. Join us for an episode filled with humor, insights, and a strong sense of community.

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/

Imagine facing a medical system that dismisses your symptoms and undermines your experiences. Our guest and dedicated advocate for patient empowerment, Anneke, reveals how she tackled this daunting challenge. Her remarkable journey from misdiagnoses such as chronic fatigue syndrome to finally understanding her rare chronic conditions, including adrenal insufficiency, lupus, and Ehlers-Danlos syndrome, exemplifies resilience. Anneke’s story is not just about surviving but thriving, and it serves as a beacon of hope for anyone navigating the complexities of the healthcare system. Her book, "Recognize Me," offers a compelling insight into the life of someone living with fluctuating chronic conditions.

We explore the nuanced challenges of medical gaslighting and the crucial role of empathetic healthcare providers who genuinely strive to listen and truly understand their patients. Anneke’s experiences underscore the importance of self-advocacy and the transformative power of receiving a proper diagnosis and treatment. Her occupational therapy and health research background adds a unique perspective to her advocacy efforts, highlighting the intersection of personal experience and professional insight. The episode sheds light on the struggles many face with being misjudged by healthcare professionals and the ongoing effort to balance health challenges with familial responsibilities.

The conversation delves into the human side of healthcare, stressing the significance of effective communication and trust between patients and doctors. We tackle the stigma of being labeled as "drug seekers" and the fears associated with transitioning to new healthcare providers. Anneke shares her encounters with medical practitioners who value collaboration and admit to uncertainties. Her insights remind us that patients should never feel ashamed of their symptoms, and despite chronic illness, a fulfilling life is within reach. This episode is a powerful testament to the resilience of the human spirit and the importance of defining personal happiness amidst health challenges.

• Welcome page to my website:  https://flyingthroughthewoods.weebly.com/
• Blog: https://flyingthroughthewoods.weebly.com/flyingthroughthewoods
• Podcasts:https://flyingthroughthewoods.weebly.com/podcasts.html
• YouTube:https://www.youtube.com/channel/UCqcKATXhDJF_X05TGW0g3xw
• Recognise ME:https://www.amazon.com/Recognise-ME-documenting-journey-gaslighting/dp/1739259270?_encoding=UTF8&qid=&sr=
  https://www.barnesandnoble.com/w/recognise-me-anneke-vliegen/1146065770?ean=9781739259273
• Reviews:https://flyingthroughthewoods.weebly.com/reviews-beoordelingen
• Facebook:https://www.facebook.com/profile.php?id=100089899112669
• Bluesky:https://bsky.app/profile/annekevliegen.bsky.social

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 gives you the ICK? Ever been trapped in an empty lobby, only to have someone sit right next to you? You're not alone! Join us as we laugh through the relatable quirks of public spaces that drive us all up the wall, from the orchestra of loud eaters to those who park just a smidge too close for comfort. We'll share some of our tried-and-true strategies for staying sane in these situations and laugh about how our childhood food aversions have hilariously done a 180 into our adult favorites.

On a completely different note, let's unwrap some wild strip club tales that promise both hilarity and heart. Picture a club with a pirate ship façade and a duo of the best wings you've ever tasted as we recount stories from behind the bar and the fascinating people we've met along the way. We even take a fun detour into the world of playful stripper names and reveal anecdotes from a documentary project in Tampa that shines a light on this misunderstood industry, complete with some unforgettable interactions.

Our adventure wouldn’t be complete without a dash of spice from the sex-positive world. Expect amusing stories like a Christmas lingerie gift gone rogue and the joy of bonding over "happy mail" exchanges within our community. We wrap it all up with self-love reminders and a cheeky offer of a sticker for surviving our episodes without needing a bathroom break. So, settle in for a rollercoaster of laughter, insight, and empowerment!

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/

Transform your approach to anxiety and personal growth with insights from Andi Byers, a decorated Air Force veteran turned holistic wellness practitioner. Andi & Jen dive in on the My Spoonie Sisters Podcast to share their incredible journeys, the hurdles faced in being recognized for achievements, and the vital role setting boundaries plays in managing anxiety. Andi's ventures, like Chronic and Iconic Coaching, are reshaping the chronic illness and wellness community, offering hope and strategies to those navigating similar paths. Together, we explore the strength found in community and the power of self-awareness in professional spaces.

Have you ever felt like anxiety had the upper hand during a public speaking engagement or a bustling conference? You're not alone. Jen recounts her own nerve-wracking experience at the American College of Rheumatology conference, where the atmosphere was nothing short of overwhelming. From the embarrassment of visible sweating to the lingering effects that spilled into the next day, managing anxiety is a battle we know all too well. But with grounding techniques, staying hydrated, and unwavering support from loved ones, there's a way to navigate through it. It's about self-care, embracing vulnerability, and sometimes, laughing at the exaggerated worries we concoct in our minds.

Social media and chronic illness present their own set of challenges, particularly when it comes to authenticity and health concerns. Our conversation touches on the evolution from seeking external validation to speaking with our own voices, underscoring the importance of prioritizing health, especially for those with compromised immune systems. From potluck food safety to the cleanliness of church communion, we humorously unpack the often-overlooked aspects of hygiene. Join us as we embrace personal growth, self-compassion, and the responsibility of caring for others, all while sharing a few laughs about faith, food safety, and the "five-second rule.

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/