Welcome to My Spoonie Sisters! If you're wondering what a "Spoonie" is, it’s a term lovingly embraced by those living with chronic illnesses, based on the Spoon Theory. It’s all about managing our limited energy (or “spoons”) while navigating life’s challenges. Each week, join us to hear from your "Spoonie Sisters" host, co-hosts, and our inspiring special guests as we share real-life stories, tips, and encouragement. Whether you're here to learn, connect, or feel less alone, you’ll find a s ...
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Autoinflammatory Podcasts
Welcome!! We're glad you found us! If you have Hidradenitis Suppurativa (HS), or know someone who does, this is the podcast for you! Join Brindley and Cyd who each have unique perspectives on what living with HS looks like, as we talk about life with HS. We'll cover common misconceptions, motherhood, talk with experts, mental health, sex and intimacy with HS, getting diagnosed, and everything in between! If you have any questions or topics you would like to see covered please tell us here so ...
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Stills Podcast
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Your Recovery Plate Matters More Than You Think
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31:27Nutrition might be the most overlooked aspect of surgical recovery, yet it fundamentally shapes how quickly and completely our bodies heal. In this deeply practical conversation, the Spoonie Sisters welcome holistic nutritionist Jacqueline Lovett to explore the powerful connection between what we eat and how we recover. We dive into why protein bec…
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What happens when a medical professional becomes the patient? Melissa Marquis—a nurse with over 25 years of experience in emergency preparedness—shares her remarkable journey from healthcare provider to autoimmune patient after being diagnosed with limited cutaneous systemic sclerosis following a frustrating 10-year search for answers. Drawing from…
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Behind the Mask: Raw Conversations When the Spoons Run Out
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48:45What does chronic illness really look like when no one's watching? When the "I'm fine" mask slips away? The Spoonie Sisters gather for an unfiltered, emotional conversation about the reality behind the façade. This episode dives deep into what happens when medication stops working, when anger takes over, and when your body betrays you despite doing…
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Have you ever been told that celery juice could cure your autoimmune disease? Or perhaps someone suggested that your joints aren't actually inflamed—they're just dehydrated? Welcome to the world of unsolicited health advice that every person with a chronic illness knows all too well. In this candid and often hilarious conversation, four women (Alis…
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What happens when chronic pain intersects with mental health? Our panel of chronic illness warriors tackles this question head-on, revealing the emotional landscape behind physical suffering and the mindset shifts that transformed their journeys. Meet Steve, living with rare and painful arachnoiditis, who found renewed purpose as an advocate after …
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Chronic illness transforms not just our bodies, but our entire emotional landscape. What happens when persistent physical pain collides with mental health? How do we find joy when our bodies seem determined to hold us back? "Mind Over Misery" brings together a diverse panel of chronic illness warriors who open up about the rarely discussed emotiona…
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Have you ever considered that your chronic illness might have given you superpowers? Not the kind that let you leap tall buildings, but the real-life abilities that make you uniquely resilient, intuitive, and resourceful. In this heartfelt conversation, we explore the unexpected strengths that emerge when living with conditions like rheumatoid arth…
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The Lupus Dietitian: Transforming Autoimmune Health
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42:40What if you could transform your autoimmune health through nutrition and lifestyle changes? That's precisely what Tanya Freirich, The Lupus Dietitian, has done for herself and thousands of clients over her 15-year career. This illuminating conversation takes you deep into the intersection of nutrition and autoimmune disease management with someone …
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Have you ever been casually told about a serious medical diagnosis you didn't even know you had? That jarring experience is just one of the many challenges we explore in this heartfelt conversation about navigating life after receiving a chronic illness diagnosis. We kick off by catching up on our summer experiences and current health challenges – …
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Patient Voices: When Champions Lead the Way
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33:08For those living with rheumatic diseases, finding your voice can be as powerful as finding the right treatment. In this candid roundtable conversation, six extraordinary patient advocates—Chelsea, Stasha, Nya, Tanya, Jen, and Cheryl—pull back the curtain on their journeys from diagnosis to becoming Rheum Champions with the Rheumatology Research Fou…
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Imagine the moment: sitting in a doctor's office, hearing those words for the first time – "You have a chronic illness." What follows isn't just medical treatment, but an emotional journey through fear, confusion, and eventually, finding your way forward. We've been in that exact seat, and in this heartfelt season opener, my Spoonie Sisters and I s…
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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 int…
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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 qui…
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The Audacious Patient: Finding Your Voice in a Broken Healthcare System
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33:37Have 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…
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When Diagnosis Becomes Your Doorway, Not Your Destiny
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41:57What 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 – inclu…
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Competition or Comparison: Finding Your Place in Chronic Illness
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36:22Have 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 …
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Send us a text Brindley and Cyd wrap up Season 3 in this episode of Hidradenitis SuppuraDIVAS. DIVAS was renewed for three more seasons. Be sure to subscribe so you don't miss new episodes. @hsconnectorg @socialcyddBy HS Connect
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Defying Limits: One Man's Battle with Arachnoiditis
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48:19Steve 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, forc…
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Send us a text My Magic Healer Founders, Ella and Dana, join the chat. Learn all about MMH and how it all began. Check out MMH at mymagichealer.com PS, don't forget to subscribe so you catch ALL the latest DIVAS episodes. @socialcydd @hsconnectorgBy HS Connect
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Empowering Parents through Asthma Education
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48:47Andrea'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 unc…
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Season 3: Episode 9 - Parenting a Child with HS
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27:55Send us a text On today's episode of DIVAS, Brindley shares her insight into parenting a child with HS. Don't forget to subscribe to catch all the latest episodes of Hidradenitis SuppuraDIVAS. @hsconnectorgBy HS Connect
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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…
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Send us a text On this episode of DIVAS, Brindley and Cyd are joined by Dr. Ghias from Tono Health. She gives us the scoop on Tono and their virtual-first clinic, which makes specialty care universally accessible and ensures world-class treatments are available to all. For more information, visit tonohealth.com Don't forget to subscribe to catch al…
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Dr. Amee's Vulnerability with Epilepsy and Advocacy
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35:13What 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 fo…
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Send us a text On this episode of DIVAS, Athena from Hope for HS joins us to talk about support groups for HS patients. For more information or to find a chapter near you, please visit hopeforhs.org Don't forget to subscribe to catch all the latest DIVAS episodes. @hsconnectorg @socialcyddBy HS Connect
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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 determ…
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Season 3: Episode 6 - Misconceptions and Accurate Information
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43:30Send us a text Welcome back to another episode of DIVAS. This week, Brindley and Cyd discuss common HS misconceptions and the importance of obtaining accurate information. Don't forget to click follow so you don't miss any episodes. @hsconnectorg @socialcyddBy HS Connect
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Send us a text On this week's episode of DIVAS, Content Creator, and HS Advocate Shannon Akins shares her Hidradenitis Suppurativa journey. Don't forget to follow the DIVAS podcast to catch the newest episodes. @socialcydd @hsconnectorg @shvnnon_mvrieBy HS Connect
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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 chroni…
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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 pr…
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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 …
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Season 3: Episode 4 - Relationships and HS
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30:52Send us a text Join us for an intimate and insightful episode as Cyd and her husband, Josh, take the reins to discuss HS and its impact on relationships. They share their journey, navigating the challenges and triumphs. Tune in for heartfelt conversations, candid advice, and empowering tips for couples facing similar struggles. Whether you’re livin…
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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, rev…
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Send us a text On this episode of DIVAS, Brindley and Cyd answer your questions about getting an HS diagnosis. Don't forget to subscribe so you don't miss any episodes. @hsconnectorg @socialcyddBy HS Connect
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Uncover the power of advocacy and community in rheumatology as we welcome our empowering guests, Jennifer Weaver and Cheryl Crow. Jennifer, a dedicated patient leader, and Cheryl, an occupational therapist and founder of Arthritis Life, open up about their journeys as Rheum Champions at the ACR Convergence 2024. With a promise of insight and inspir…
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Send us a text Join us for this episode of SuppuraDIVAS and ALL things advocacy. Make sure you subscribe to catch the latest episode. @hsconnectorg @socialcyddBy HS Connect
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Have you ever felt unheard or dismissed in a doctor's office? Join us as we navigate through the deeply personal health journeys of Isabel and Emily, part of the founding team of Guava Health, who share their compelling stories of battling complex medical challenges and the frustrating experience of not being believed by healthcare professionals. T…
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Send us a text We're back!! Catch up on what's been happening with Brin and Cyd since last season on today's episode. Make sure you like and subscribe so you can continue to laugh & cry with us about all things HS! @hsconnectorg @socialcyddBy HS Connect
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The Silent Struggle: Endometriosis Revealed
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34:12Join us for a heartfelt and enlightening conversation tackling one of women's health's often-overlooked issues: endometriosis. Through the eyes of three women who bravely share their personal narratives, we uncover the complexities around the experiences of living with this painful condition. From the onset of their first menstrual cycles, fraught …
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A Mother's Advocacy in the Face of Linspad Syndrome
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50:20Kim, 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. …
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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. J…
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Embracing ADHD: From Harlem Globetrotter to Empowering Entrepreneur
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43:59Discover 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 lif…
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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 o…
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Elevator Pitches from your Spoonie Sisters
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43:17Crafting 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. A…
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*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…
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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 communi…
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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 adr…
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Laughing Through Life's Quirks: From Public Spaces to Strip Club Stories
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36:33What 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 st…
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Navigating Anxiety with Humor and Self-Care
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42:14Transform 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 man…
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*Trigger Warning* What if your lifelong pain was dismissed as mere imagination? Join us as we explore Riane's powerful narrative of self-advocacy and perseverance in the face of medical doubt. As a Hawaii native, Riane offers an intimate look into her life with juvenile rheumatoid arthritis and chronic migraines, shedding light on how these experie…
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