The tiny creatures lurking in your backyard could change your life forever. Shira Haid knows this reality all too well, having battled severe tick-borne illnesses that left her unable to walk or speak. Today, she's turning that painful experience into purpose through her educational platform, Lemon or Lime.

What began as a website has blossomed into a YouTube channel and growing social media presence dedicated to demystifying tick-borne diseases like Lyme, Babesia, and Bartonella. Shira's mission is clear: provide the resource she desperately needed during her own diagnostic journey that took three years and left her disabled.

Throughout our conversation, Shira shatters dangerous myths about tick-borne diseases. The CDC's claim that ticks must be attached for 36-48 hours to transmit disease? False – some infections can transfer in just 15 minutes. That famous bullseye rash everyone associates with Lyme? Only 20-30% of patients ever develop it. And the notion that ticks only exist in wooded areas of the Northeast? Wrong again – they're virtually everywhere except Antarctica, including desert states at higher elevations.

Perhaps most alarming is Shira's discussion of co-infections and emerging threats like Alpha-gal syndrome, a tick-transmitted condition causing potentially life-threatening allergic reactions to mammalian products – including medications. With 70% of pharmaceuticals containing mammalian ingredients, this presents a frightening challenge for affected patients.

For those concerned about prevention, Shira offers practical advice: treat clothing with permethrin, use Picaridin lotion on exposed skin, perform regular tick checks, and maintain shorter lawn heights. Hunters and hikers should consider specialized clothing with elastic cuffs that prevent ticks from accessing skin.

Connect with Shira on YouTube and Instagram @LemonorLime (remember, that's Lyme with a Y!) and join her mission to raise awareness about these devastating but preventable diseases.

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Chronic illness steals more than your health—it can rob you of your identity and everything you once loved. For Shira Haid, a classically trained musician and clinical massage therapist, the onset of multiple tick-borne illnesses, including Lyme disease, marked the beginning of a devastating transformation. What began as extreme fatigue in 2014 quickly spiraled into debilitating pain, cognitive dysfunction, and the loss of her independence.

The road to diagnosis proved maddening. Despite having a physician father actively helping with her care, Shira endured nearly two years of deteriorating health before finally discovering the root cause. Along the way, she faced shocking examples of medical gaslighting—being accused of drug use, labeled a "Lyme loony," and even receiving suggestions from a doctor about how she "should kill herself next time." These experiences highlight the profound ignorance and dismissal many chronic illness patients face when seeking help.

Perhaps most heartbreaking was Shira's disconnection from her artistic self. "For a very long time, my thought process was what is the point? There's no point in my artwork anymore, there's no point in doing music anymore, because that's over," she reveals. This creative death felt as painful as her physical symptoms, leaving her a shell of her former self.

The financial reality of chronic Lyme disease compounds these challenges. With insurance companies refusing coverage—even after the CDC's recent acknowledgment that Lyme can be chronic—Shira estimates her family has spent hundreds of thousands of dollars on treatments. Not everyone has this privilege, leading many patients to attempt creating their own treatment protocols out of desperation.

Yet through therapy, nutritional changes, and gradually reconnecting with her creative passions, Shira has begun the slow journey back to herself. When she finally sang again after years of silence, the experience brought tears and a flood of emotions, reminding her of the person she once was and could be again.

Have you experienced medical gaslighting or the grief of losing parts of your identity to illness? Share your story in the comments and join our community of resilient chronic illness warriors helping each other find a path forward.

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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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Have you ever wondered what it's like to be both the healer and the one in need of healing? Meet Mallory Carlson, an acupuncturist of nearly 12 years who has simultaneously navigated her own 16-year journey with debilitating migraines and women's health issues. 

Mallory takes us deep into the raw reality of chronic pain, sharing how she's learned to read her body's signals and transform what once required days of recovery into hours. Her story illuminates the profound mental health challenges that come with chronic illness—from the isolation of canceled plans to the guilt of feeling like you're "too much"—and the powerful practice of self-compassion she's developed in response.

The conversation turns particularly powerful when Mallory describes her experiences with medical gaslighting and the physical, almost shock-like reaction she had when finally finding a doctor who recognized her condition after 14 years of searching. "It was such a physical experience," she explains, "the act of being seen and finding someone who can take care of you."

From this frustration emerged her platform, The Audacious Patient, born from righteous rage at healthcare inequities and dedicated to making complex medical information accessible. As Mallory shifts from hands-on patient care to education and advocacy, she's channeling her personal struggles into a mission that helps others avoid the years of confusion she endured.

Whether you're managing chronic illness, supporting someone who is, or simply interested in healthcare advocacy, this episode offers practical wisdom, validation, and a reminder that sometimes our greatest challenges become our greatest gifts to others. As Mallory beautifully summarizes what it means to be part of a chronic illness community: "It's solidarity and just a quiet knowing... we just have to be there for each other."

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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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What happens when doctors dismiss your symptoms for years, even as you're coughing up blood? For Amy, this medical gaslighting journey finally ended with a diagnosis of pulmonary arterial hypertension in March 2023, followed by immediate hospitalization and life-altering treatments.

Amy's story isn't just about receiving difficult diagnoses – including a rare heart defect, genetic mutation, and eventually breast cancer. It's about her revolutionary decision to reject the limitations others tried to place on her life. When her doctor automatically assumed she would need to quit her beloved career as a hairstylist and apply for disability, Amy pushed back with a simple question: "Why?" This moment transformed her approach to healthcare forever.

Throughout our conversation, Amy shares powerful insights about navigating the healthcare system as your own best advocate. "Your doctor is not your friend," she explains, encouraging listeners to approach medical appointments like interviews where you're assessing if this provider deserves to be on your healthcare team. Her practical suggestions – from asking doctors to document refusals in your chart to seeking second opinions without apology – provide a roadmap for anyone struggling to be heard.

The emotional impact of chronic illness resonates deeply throughout our discussion. Amy beautifully articulates the complex emotions behind diagnosis tears – not self-pity as many assume, but relief at finally being heard, grief for what's lost, and determination to create a meaningful life despite limitations. Her work with "Know Your Lemons" breast cancer awareness organization and her goals to lower mammogram screening ages show how advocacy can transform personal pain into powerful purpose.

Ready to find your voice in a healthcare system that too often silences patients? Listen now and discover why, as Amy reminds us, "Nobody knows your body better than you."

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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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Have you ever found yourself scrolling through social media, seeing others with your same diagnosis seemingly thriving while you struggle to get out of bed? That gnawing feeling of "why them and not me?" isn't something we talk about enough in the chronic illness community.

The Spoonie Sisters dive deep into the complicated emotions of competition and comparison that silently impact many people with chronic conditions. Hosts Jen Weaver, Andi Byers, Linnea Knisley, and Angelic Ingram share their raw, honest experiences with jealousy, anger, and the overwhelming feelings that come when we measure our journeys against others.

Each sister reveals their personal turning point - from Andi's sixteen years of fighting for diagnosis validation while serving in the military to Linnea's realization that social media only shows highlight reels of chronic illness, not the full 24-hour reality. These powerful stories illuminate how comparison steals our joy and delays our healing, while community support transforms our experience.

For those newly diagnosed, this episode offers priceless wisdom: focus on your own journey, give yourself grace for small accomplishments, set healthy boundaries, and most importantly, let go of yesterday's struggles to embrace today's possibilities. As Linnea beautifully summarizes, "Compete in kindness instead of competing in suffering." Every win for one person in our community lifts us all.

Ready to transform your relationship with comparison and find your place in the chronic illness community? Listen now and remember that your journey isn't meant to look like anyone else's - it's uniquely, powerfully yours.

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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
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Steve Lovelace's journey with arachnoiditis demonstrates the remarkable strength of the human spirit when faced with seemingly insurmountable pain. When his neurologist delivered the devastating diagnosis in 2014 with a solemn "I'm sorry," Steve realized his life would never be the same. This rare disease, ranking at the top of the pain scale, forced him to abandon his career as a traveling salesman and reimagine his entire existence.

The roots of Steve's condition trace back to 1982, when a horrific accident left him temporarily paralyzed from the waist down with three crushed vertebrae. Though he defied doctors' predictions by walking again, the trauma planted seeds for future suffering. As mobility issues and excruciating pain gradually took over, Steve initially followed the traditional path of pain management through medication. But after years as "a zombie still thrashing in pain," he made the bold decision to quit all medications cold turkey, enduring withdrawal that he describes as worse than his original accident.

What makes Steve's story truly extraordinary is his refusal to surrender. He categorizes his days as "good days, bad days, and survival days," strategically using each to maximize his life despite constant pain. On better days, he pushes his physical boundaries through endurance sports, riding his bike with ankle foot orthotics and walking with forearm crutches. He recently completed a 5K and is training for a quarter marathon, demonstrating that limitations exist primarily in our minds.

Steve's golden doodle Shelby provides constant companionship, particularly on difficult days when PTSD compounds his physical pain. His journey has evolved into a mission of inspiration as he writes a book about his experiences and pursues motivational speaking. Living by the mantra "Don't say I can't, say I'll try," Steve shows us that true resilience isn't about avoiding suffering but transforming it into purpose.

Listen as Steve shares profound insights about family dynamics with chronic illness, the pitfalls of the medical system, and finding meaning beyond diagnosis. His story reminds us that even in our darkest moments, we can choose how we respond to adversity.

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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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Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
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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.

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/

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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:
https://myspooniesisters.com/

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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

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)

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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