Andrea's inspiring journey from interior design to public health is a testament to the power of personal experience in shaping professional paths. Prompted by her son's asthma diagnosis and the challenges they faced navigating the healthcare system, Andrea became a Certified Health Education Specialist and Asthma Educator. Through her story, we uncover the emotional resilience required to manage a child's chronic illness and the unwavering trust in parental instincts that guided her towards advocating for better asthma education and specialized care.

Medicine shaming and the prevalence of misleading health advice online pose significant challenges for those managing chronic conditions like asthma. Andrea shares her candid experiences with unsolicited advice and the pitfalls of miracle cures, highlighting the critical importance of consulting healthcare professionals and relying on accurate, reputable sources. We also reflect on outdated misconceptions about asthma and the necessity for precise diagnoses and treatments, especially considering the pervasive myths from the 1980s that continue to influence public perception.

Creating an asthma-friendly home is crucial for effective management of the condition, and Andrea offers practical strategies to achieve this. From reducing allergens with specific cleaning techniques to ensuring family members are prepared for medical emergencies, she provides actionable tips to maintain a healthy environment. We also delve into the importance of balancing asthma management with quality of life, discussing how to enjoy simple pleasures while minimizing health risks. Andrea's insights empower listeners to make informed decisions that positively impact their lives and those of their loved ones.

A few reasons you should care about asthma:

• Asthma is the most common chronic disease among children
• Asthma is the #1 cause of missed school days (and kids with asthma grow up to be adults with asthma.)
• 10 people in the U.S. die each day from asthma

I love the famous statistics quote by Paul Badeur, "Statistics are human beings with the tears wiped off."

• American Lung Association https://www.lung.org/
• Asthma and Allergy Foundation of America https://aafa.org/
• Allergy & Asthma Networ

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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.

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🎙 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

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How do you pursue your dreams when your body seems to have other plans? For slow travel nomad and empowerment coach Caitlin, the answer lies in adaptation rather than abandonment. With a background in environmental engineering and a life shaped by fibromyalgia and complex mental health challenges, she's crafted a unique approach to entrepreneurship that prioritizes well-being alongside achievement.

"I got very, very sick because I was trying to keep up with everybody else," Caitlin reflects, describing her experience in business accelerator programs. This pivotal moment taught her that entrepreneurship with chronic illness requires a different framework—one that might actually be healthier for everyone. "Having a chronic illness actually means that you are respecting your limits a little earlier than maybe somebody who's doing that for 20 years and getting really sick."

The conversation explores nervous system regulation as a powerful tool for managing chronic pain. Caitlin explains how understanding her body's signals transformed her relationship with pain: "When I was able to look at pain as my body saying slow down or I need something... that reframe honestly even reduced the time that my flares would last." This perspective shift—viewing symptoms as protective messages rather than evidence of a failing body—offers profound healing potential.

Perhaps most valuable is Caitlin's wisdom on boundary-setting. As a self-described sensitive introvert, she's learned to stop over-explaining her limitations. "A boundary is what you are going to do for yourself to keep yourself safe," she explains, "recognizing that energy is finite and if I'm setting a boundary, it's the best thing not just for me but for my work, for my relationships."

Whether you're managing a chronic condition, feeling burnout from hustle culture, or simply seeking more intentional ways of living, this conversation offers practical wisdom for honoring your body's needs while still pursuing a life of purpose and adventure. Listen and discover how limitations, when embraced with compassion, can become doorways to unexpected possibilities.

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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:
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What happens when you combine the expertise of a trailblazing dentist with an unwavering commitment to mental health advocacy? Dr. Amee shares her powerful story of living with epilepsy since age eight and how it catalyzed her mission to challenge societal stigma and embrace vulnerability. Her journey from patient to advocate is a beacon of hope for those newly diagnosed, offering insights into balancing a thriving career and personal life while managing an invisible illness. Join us as we uncover the transformative power of sharing one’s story and the strength found in authenticity.

Navigating the complexities of parenting with a chronic illness presents its own unique challenges. In our heartfelt discussion, Dr. Amee reveals the emotional rollercoaster she experiences, from isolation and depression to building resilience and understanding within her family. She emphasizes the importance of community support and open communication with children, allowing them to be active participants in the journey without feeling like a burden. Through personal anecdotes, we explore the significance of age-appropriate transparency, ensuring that the next generation understands and embraces the intricacies of living with chronic conditions.

Embracing vulnerability and fostering a sense of shared humanity are at the heart of our conversation. We celebrate the courage it takes to show up authentically, even in the face of adversity. Through gratitude and support, we delve into the beauty of creating a network that encourages openness and empathy. By highlighting personal stories and the transformative journey from patient to educator, we hope to inspire listeners to find strength in their vulnerabilities and build supportive communities that celebrate genuine connections.

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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

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Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)

Website:
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Join us for a deeply moving conversation with Ashley Spalla, as she recounts her extraordinary journey living with Ehlers-Danlos Syndrome and hip dysplasia. From a seemingly benign basketball injury in college, Ashley quickly found herself facing a challenging medical path that culminated in 49 surgeries over a decade. Her story, filled with determination, resilience, and hope, offers valuable insights not just into the challenges of navigating chronic illness, but also the importance of advocacy, community support, and self-empowerment.

Ashley passionately discusses how her struggles led her to a fulfilling role as an advocate for others experiencing similar challenges. Discover her work with Miles for Hips and how she is committed to raising awareness and improving the patient experience in the healthcare system. She speaks candidly about her experiences with medical professionals and the crucial lessons she learned along the way, emphasizing the importance of seeking second opinions and being an active participant in one’s own healthcare journey.

Moreover, the podcast explores Ashley’s love for adaptive sports, highlighting how her passion for skiing has brought her joy and a sense of freedom despite her physical limitations. Listeners will find inspiration in Ashley's perspective: that living with chronic illness doesn’t mean giving up on your passions – rather, it can lead to discovering new avenues for joy and personal growth.

Through her heartfelt story, Ashley invites you to connect, reflect, and perhaps share in the triumphs and trials that accompany living with a chronic illness. It’s a conversation that speaks to the core of what it means to overcome adversity and emerge stronger on the other side. Don’t miss this uplifting episode filled with wisdom, humor, and hope! Subscribe, share, and connect with us in our communities!

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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

Struggling with the challenges of invisible disabilities? Join us as Maggie Cavanaugh, a National Certified Counselor living with postural orthostatic tachycardia syndrome (POTS), reveals her transformative journey from an advertising career to becoming a counselor. Diagnosed at just 14, Maggie navigates the complexities of mental health and chronic illness with empathy, sharing her insights on overcoming disparities in income and workplace stigma. Her story unfolds with a heartening look at how the COVID-19 pandemic inspired her to pivot and support those feeling isolated, highlighting the importance of empathy and understanding.

Meet Andy, a remarkable advocate living with multiple invisible disabilities, who demonstrates the power of resilience and self-advocacy. Blindness, deafness, and autoimmune diseases have not stopped Andy from championing the necessity of strength-based, solution-focused strategies both personally and professionally. Their wisdom extends to the role of understanding healthcare providers and the critical support of family and partners. Andy's connection with the Spoonie community underscores the importance of collaborative networks, as they share strategies for empowerment and fostering genuine support systems.

Maggie and Andy shine a light on self-care and community as cornerstones of managing chronic illness. They explore turning self-criticism into self-compassion, setting boundaries, and embracing empowerment. Their stories remind us of the resilience found in authentic connections and the transformative power of understanding and support. As we express gratitude to the Spoonie community, the episode culminates in a tribute to the strength and inspiration drawn from shared experiences, leaving listeners with a sense of belonging and encouragement to cherish their perseverance.

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

Chronic illness impacts every aspect of our lives, including the bedroom. In this refreshingly candid conversation, we break down the walls of shame and silence surrounding sexuality when living with chronic conditions.

Ali returns from her mountain cabin retreat to share how her diagnosis completely changed her relationship with intimacy—once a proudly sexual person who even won a Thunder Down Under fake orgasm contest (with her mother cheering her on!), years of severe symptoms and medication side effects left her disinterested in physical connection. Only after prioritizing rest and health did she reconnect with that part of herself – a journey many Spoonies can relate to.

The discussion expands into how religious upbringings compound these challenges. From Catholic households to Mormon traditions, many of us received messages of fear and shame rather than education about our bodies. Jen's mother joins the conversation, offering fascinating insights into Mormon temple practices, including special garments with symbolic markings and secret names women aren't allowed to speak. Her powerful story of liberation – shouting her temple name from a mountaintop – demonstrates how breaking free from restrictive beliefs can be part of our healing journey.

Personal stories range from embarrassing (smuggling a vibrator through Middle Eastern customs) to deeply concerning (the lack of comprehensive sex education in today's schools). We examine how gender expectations shaped our understanding of roles within relationships and how breaking these generational patterns through open, honest conversations can create healthier foundations for our children.

Whether you're struggling with reclaiming your sexuality through chronic illness or want to better understand how illness impacts intimacy, this episode offers validation, laughter, and a reminder that your experiences deserve to be acknowledged without shame. Join us for this profoundly human conversation about one of the most natural yet seldom-discussed aspects of the Spoonie experience.

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

Ever wondered how fitness can be more inclusive and empowering for everyone? Join us as we dive into a transformative conversation with Keira, the innovative founder of Chaotic Good Fitness, who has redefined personal training for neurodivergent and queer individuals. Keira's journey, marked by personal battles with ADHD and depression, has fueled their empathetic and personalized approach to fitness. Discover how Kira crafts unique fitness plans for those with chronic conditions like RA, fibromyalgia, and POTS, prioritizing collaboration and boosting confidence while challenging the stale norms of traditional fitness.

Let's bring a bit of whimsical fun into our fitness journey! Picture this: workout plans laced with nerdy references and inspired by our favorite board games like Mysterium and Clue. We explore how these playful elements foster community and connection, making exercise sessions spark joy beyond the physical. Whether reminiscing about the cultural significance of Mahjong or sharing quirky stories from beloved games, it’s all about tailoring workouts to fit personalities and interests, shifting the focus from weight loss to holistic well-being and joy.

Staying motivated can be a struggle, especially for those with ADHD. Together with Keira, we tackle the stigmas and societal expectations attached to fitness, advocating for flexibility and creativity in workout routines. We introduce the concept of an "internal bra" for improved posture and share practical tips for maintaining an active lifestyle. As our conversation wraps up, we express heartfelt gratitude for our cherished community of "Spoonies," whose support energizes and inspires us. Join us for this empowering and heartfelt episode as we celebrate the strength in community and the joy of fitness tailored just for you.

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

What happens when ordinary deja vu becomes something far more complex? In honor of Epilepsy Awareness Day, join us as we uncover Emma's extraordinary journey with epilepsy, a condition she was unexpectedly diagnosed with at the age of 23. Her story is a testament to resilience as she navigates through the labyrinth of symptoms and misdiagnoses, revealing the often-overlooked intricacies of living with epilepsy. Emma's candid recount of a pivotal episode in Sri Lanka and her subsequent advocacy work offers a compelling look at the need for greater awareness and understanding of neurological conditions.

Emma's experiences paint a vivid picture of the emotional terrain that accompanies chronic illness. The gap between personal reality and public perception is stark, where "I'm fine" often masks a complex struggle. This conversation sheds light on the critical need for empathy and a deeper understanding of those living with chronic conditions. By sharing her personal experiences, Emma hopes to bridge the disconnect, offering insights into the hidden battles that many face and the importance of fostering a supportive community.

Art becomes a beacon of healing and expression for Emma, transforming her journey with epilepsy into a creative force. Her venture into illustration and storytelling is not only a means of personal acceptance but also a way to connect with others facing similar challenges. Through her work and collaborations like "Beyond the Ordinary," Emma champions resilience and neurodiversity, highlighting the profound impact of creativity as a tool for coping and building community. Tune in to explore how personal struggles can redefine success and lead to a powerful story of growth and empathy.

https://linktr.ee/byemmadearling

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