My Spoonie Sisters

What happens after the diagnosis, when the pamphlets end and real life begins? We open up about the messy middle: the anger at being dismissed, the relief of finally being believed, and the slow turn toward joy that doesn’t deny pain. Our conversation traces the path from confusion to clarity, showing how better information, kinder self-talk, and small, repeatable habits rebuild a life that feels like yours again. We share the moments that changed our mindset—an elder’s “move it or lose it” mantra that reframed activity, the first time a mobility aid left the car and came into the store, and the day we stopped hiding illness from kids and watched them respond with curiosity instead of judgment. You’ll hear how we adapt movement without glorifying push-through culture, why rest counts as progress, and how nutrition and pacing become tools instead of punishments. We talk about the evolving medical landscape too: more education at diagnosis, clearer care plans, and the power of finding professionals who speak chronic illness fluently. If you’ve ever felt too young to be this sick, if you’ve been told you’re “just tired,” or if you’ve wondered whether joy still fits in a body that hurts, this episode is for you. We offer practical ways to find pockets of joy during flares, use mobility aids without shame, and measure wins in consistency rather than intensity. The mountain isn’t only the illness—it’s learning to climb with better maps, truer friends, and a voice that says you still get a full, worthy life. If this resonates, follow the show, share it with a friend who needs a little hope, and leave a quick review so others can find it. Your story might be the umbrella someone else needs. Send us a text Keep your spoons close and support system closer. 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

A single word can change a life. When Andi’s nonstop yeses ended in cardiac arrest, she rebuilt her world around a different answer—one that protected her health, restored her energy, and revealed who was truly in her corner. We open up about the art of saying no as a complete sentence, why urgency is often self-created, and how to educate loved ones about the real recovery costs of “just a quick outing.” Together, we break down practical scripts for declining invitations without guilt, how to suggest low-impact alternatives, and the mindset shift that turns boundaries into care rather than conflict. Andi shares the hardest boundary she set—saying no to herself—after realizing that acts of service had become a shield against discomfort. We explore how to read your body’s signals, differentiate a fear-based no from a self-protective no, and recognize when a relationship can’t tolerate your limits. If you live with chronic illness, sensory sensitivities, or burnout, you’ll hear a blueprint for pacing, planning, and protecting recovery time. We also dig into self-trust: why people-pleasing feels safe until it drains you, and how confidence grows from repeated, calm nos before you hit the wall. You’ll learn how to exit one-way dynamics, set early boundaries to prevent flares, and build a support circle that adjusts the plan instead of pressuring the performance. Andi points to free resources, masterclasses, and workbooks to help you practice scripts, own your story, and become proudly rooted in your truth. Press play for grounded advice, clear language, and real examples you can use today. If this resonates, subscribe, share with a friend who needs it, and leave a review with the next no you’re committing to this week. Send us a text Keep your spoons close and support system closer. 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

The light fades, routines slow, and the quiet gets loud. We name the winter blues without sugarcoating them, then share what actually helps: sunlight rituals, happy lights you’ll remember to use, and small anchors that turn long dark days into something gentler and more human. We compare notes from different climates—rain-soaked Pacific Northwest, high-desert cold, and Midwest grit—to show how environment shapes mood and energy. From opening the blinds wide and soaking up a fifteen‑minute sun patch to keeping a happy light on your desk, these simple actions add up. We talk about the drag of lost outdoor time, the mental toll of feeling left behind, and the permission to choose steadiness over hustle when your body and brain want warmth and rest. Connection takes center stage. We make the case for an accountability circle designed for winter: friends who check in, spark belly laughs, and pull you back when turtling becomes a habit. You’ll hear practical prompts for asking for help, plus easy ways to give it—Cards for Warriors, quick voice notes, and tiny acts that make isolation softer for everyone. Creativity and comfort round things out with low‑stakes projects like watercolors and journaling, alongside freezer‑friendly cooking, soups, stews, fresh bread, and the kind of kitchen rituals that make the house smell like home. If you’re bracing for the dark months, this conversation offers tools you can use today and a reminder that you don’t have to power through alone. Listen, save your favorite tips, and share this episode with someone who needs a brighter winter. If it helped, subscribe, leave a review, and tell us your go‑to winter reset. Support Group: https://lp.constantcontactpages.com/su/83rig1o/MySpoonieSisters Andi’s book: https://amzn.to/3LrPl1t Linnea’s book: https://amzn.to/47K9o2H Jen’s book: https://amzn.to/4qRbB5e Happy Light: https://amzn.to/3Xfqrol Send us a text Keep your spoons close and support system closer. 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 wish your bag could calm a flare before it starts? We empty our real spoonie survival kits and show exactly how we plan for pain spikes, long waits, and the kind of detours that come with chronic illness. From compact pain tools to mood-lifting comforts, you’ll hear how we choose items that solve predictable problems—then scale up for travel without hauling a suitcase. We start with the everyday carry essentials: hand sanitizer, lens wipes, and multiple lip care options because dry mouth and dehydration hit hard. Ginger chews help with nausea and jitters, while compression gloves and lidocaine patches offer quick relief for aching hands and joints. We share why a sanitizer-pen is a genius hybrid, how a tiny bio stick helps settle the gut, and why two forms of Benadryl can be a lifesaver. Snacks matter just as much: roasted nuts, protein bars, and freeze-dried fruit keep energy stable when appointments run long. A favorite verse card in the wallet can reset a spiral faster than you’d think. Then we move beyond purses to the systems that keep us steady at home and on the go. A nightstand or chair-side kit holds electrolytes, dry mouth lozenges, and a dedicated snack box so you don’t need to stand when flaring. Caregivers will find easy wins: labeled drawers, a ready-to-grab travel tote, and a weekly pill organizer that flips to show what’s been taken. For longer outings, we add a TENS unit, trigger point tool, multiple electrolyte formats (powders, chews, capsules, even pickle juice), and a bento-style snack so eating doesn’t feel like a chore. The goal is predictability, not perfection—small, smart choices that make hard days workable. If you’re building your first kit or upgrading an old one, we’ve got practical packing lists, product ideas, and simple routines that reduce stress and decision fatigue. Tell us what we missed, share your favorite items, and help other spoonies build their own safety nets. Subscribe, leave a review, and drop your must-carry pick—what’s the one item you never leave home without? Send us a text Keep your spoons close and support system closer. 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

Holiday joy doesn’t have to come with a meltdown. We open up about how to survive loud rooms, heavy schedules, and high expectations while living with chronic illness or limited energy. From early meal prep to quiet “time-out” routines, we share the small moves that make the season easier, calmer, and genuinely more fun. We get practical about pacing: pies baked the day before, casseroles assembled ahead, and a simple oven timeline that stops last-minute chaos. We talk about stocking easy snacks, accepting help even when it’s not your way, and using tools like a toaster oven to spread the load. Caregivers get a strategy too—turn leftovers into complete frozen plates so a balanced meal is always within reach. Overstimulation has a plan. We lean on box breathing, short walks, headphones, and a designated safe room to reset the nervous system. We also name the tough stuff: boundary pushback, PTSD triggers, and the relatives who just don’t get it. You’ll hear clear scripts to protect your energy without picking a fight, reminders that your body’s needs are valid, and proof that consistent boundaries create more energy for real connection. The theme is simple: choose peace, protect your spoons, and keep the love. If this helped you feel seen—or gave you one tactic you can use this week—subscribe, share with a friend who needs it, and leave a quick review so more spoonies can find us. What’s your go-to reset when the room gets loud? Send us a text 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 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

Send us a text 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 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

When Kathy Chester lost her eyesight in one eye on Mother's Day over twenty years ago, she had no idea this would be the beginning of her journey with multiple sclerosis. As a former gym owner and lifelong athlete, her first instinct was to "run it out"—pushing her body harder in hopes of defeating the disease through sheer determination. Today, that fighting spirit has evolved into something far more powerful. Kathy joins us to share her transformation from newly diagnosed patient to empowered advocate as the host of the MS Disrupted podcast and coach for people living with chronic illnesses. Her philosophy challenges conventional thinking: instead of focusing on limitations, she asks "what am I willing to lose?"—a question that sparked her movement-focused approach to managing MS and rheumatoid arthritis. The conversation delves into the complex emotional landscape of chronic illness, particularly the anxiety that often accompanies diagnosis and progression. All three speakers acknowledge the struggle to extend grace to themselves despite readily offering it to others. Kathy emphasizes the importance of connecting with people who truly understand this unique anxiety, noting that support from those with similar experiences provides validation that well-meaning but uninformed supporters cannot. From practical advice about distinguishing between normal exercise soreness and disease symptoms to red flags when evaluating potential partnerships with health companies, Kathy offers invaluable insights gained through both personal experience and professional expertise. Her expanded support group acknowledges that autoimmune conditions often appear in clusters, creating spaces where people with multiple diagnoses can find comprehensive understanding. Whether you're living with chronic illness, supporting someone who does, or simply interested in transforming how we approach health challenges, Kathy's disrupting philosophy offers a refreshing perspective. Connect with her through Instagram @msdisrupted or email msdisrupted@gmail.com to learn about her one-on-one coaching opportunities and upcoming group sessions. https://www.msdi Send us a text 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 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 Keep your spoons close and support system closer. 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

When life deals you a complicated hand of chronic illnesses, what do you do with it? For Erika Falco, the answer was clear – transform it into a mission of connection and hope for others walking similar paths. At just 30 years old, this former elementary school teacher navigates a complex medical reality that includes stage 4 endometriosis (found throughout her body, even in her lungs), gastroparesis requiring a feeding tube, MCAS, POTS, Sjögren's, mitochondrial disease, and small fiber neuropathy. Yet instead of letting these conditions define her limits, Erika has channeled her experiences into creating beautiful moments of connection through her CareMail program. The heartbeat of Erika's advocacy is sending cards, stickers, fidgets, and love notes to fellow "warriors" facing chronic illness, mental health challenges, or difficult circumstances. This simple act was born from her own hospital experiences, knowing how meaningful it is to receive something in the mail besides medical bills. The program has sparked touching connections, including daily email exchanges with an elderly woman who says Erika's correspondence has brought childlike joy back into her life after many difficult years. Between managing medications through her feeding tube, attending multiple medical appointments, and navigating the challenges of healthcare systems that often dismiss complex patients, Erika finds small moments of joy through coloring, reading, and spending time with her beloved dog. Her advocacy is fueled by experiences with medical gaslighting and a desire to speak for those who struggle to advocate for themselves. Looking ahead, Erika hopes to expand her reach, possibly through educational conferences and new social media platforms. "I want to minimize suffering because this world is so broken," she shares, highlighting her core motivation to ensure no one feels alone in their health struggles. Want to support Erika's mission or request CareMail? Reach out to her on Instagram @EricaFal where she welcomes messages about your favorite colors, animals, and what might brighten your day during difficult times. Send us a text 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 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 Keep your spoons close and support system closer. 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 the medical establishment tells you your debilitating symptoms are "all in your head"? Dr. Diana Driscoll shares her journey from successful optometrist to disabled POTS patient and groundbreaking researcher. After a virus triggered debilitating autonomic dysfunction, she and her children faced severe health issues, prompting her to seek answers when traditional medicine failed them. Dr. Driscoll developed the Driscoll Theory, identifying three critical factors in conditions like POTS: high intracranial pressure, cardiovascular inflammation, and vagus nerve dysfunction. Surprisingly, standard treatments often exacerbated patients' conditions. Using her optometry skills, she identified subtle eye abnormalities indicating blood vessel damage, leading to the development of supplements like Parasym Plus that target the underlying issues affecting the autonomic nervous system. Now, her children live normal lives, proving recovery is possible. Dr. Driscoll's message is one of hope for those facing invisible illnesses: "There's always a reason for illness." Through POTS Care and ongoing research, she continues to seek answers for patients worldwide, offering support for anyone fighting for validation and effective treatments. Dr. Diana Driscoll. Expert on POTS Syndrome. The Patient's Researcherhttps://drdianadriscoll.com/Send us a text 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 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 Keep your spoons close and support system closer. 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

Steve Lovelace didn't plan to share his recent health crisis on the Spoonie Sisters podcast, but sometimes the most powerful conversations happen unexpectedly. When Steve woke at 3:30 AM with unmistakable heart attack symptoms, he made a decision he now warns others against – driving himself to the emergency room. Despite his high pain tolerance developed through decades of chronic pain, the gravity of the situation was clear when doctors discovered a blood clot in one of his nine coronary stents. This heart attack was just the beginning of a medical emergency trifecta that hit the Lovelace family within weeks. Between his son's broken wrist from a scooter accident and Steve's own emergency room visit for a severe laceration requiring nine stitches, the family faced a perfect storm of health crises. Yet through it all, Steve maintains his characteristic humor and resilience – qualities he credits to his Irish and Scottish heritage. The conversation takes a sobering turn when Steve reveals the financial burden of his new blood thinner prescription. At $490 per fill (with the "generic" alternative just $2 cheaper), he now faces an impossible choice between life-saving medication and covering basic needs like food and utilities. This stark reality highlights the broken medication pricing system that forces vulnerable patients to make dangerous compromises with their health. Despite these immense challenges, Steve finds strength in sharing his story through his podcast "Arachnoiditis Unfiltered" and in connecting with others who understand the chronic illness journey. His wisdom about focusing only on what you can control in your "three-foot circle" offers a powerful framework for anyone navigating difficult health circumstances. As both Steve and Jen remind listeners, finding community and even moments of laughter during dark times isn't just possible – it's essential for survival. Their conversation reminds us that no matter where we are in our chronic illness journey, we don't have to face it alone. https://www.instagram.com/splovelace?igsh=MTA4eHRxbDB0ZmcyZQ==Send us a text 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 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 Googled your symptoms only to fall down a rabbit hole of doom and gloom? You're not alone. When Asmaa was diagnosed with multiple sclerosis in 2022, she desperately searched for someone who could tell her life wasn't over—someone who looked like her, talked like her, had a career, was getting married, but was 10 years ahead in their journey who could say, "Don't worry, you'll be fine." Instead, she found fear, anger, and non-acceptance online that affected her mental health more than the disease itself. This pivotal moment became the spark for Lori Health, a groundbreaking platform connecting chronically ill patients with peer wisdom and evidence-based hacks. As Asmaa shares her journey from diagnosis to building the world's largest library of verified habits for chronic illness, we explore the profound gap in healthcare that leaves newly diagnosed patients feeling adrift and alone. With 500 million people worldwide living with autoimmune conditions—one in ten people in the UK—this isn't a small problem. What sets this conversation apart is Asmaa's remarkable perspective on illness as opportunity. After leaving her high-profile career in luxury brands, moving countries, and dedicating herself to healing, she achieved a reduction in her MS lesions. Rather than keeping her discoveries to herself, she built a platform making this wisdom accessible to everyone—regardless of their ability to take time off work or relocate. Through Lori Health and the newly launched Lori Peers video matching service, she's creating the resource she needed most in her darkest hour: stories of hope. Whether you're navigating a new diagnosis or supporting someone who is, this episode illuminates how community wisdom can transform the chronic illness experience from isolation to empowerment. As Asmaa beautifully puts it: "So many people would not change a thing... It's completely unrelated from how bad you are physically. It's all here—you decide how things are going to unfold." https://www.instagram.com/wearelori?igsh=MXg3ZTl0MDR1aGV5Mg== Send us a text 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 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

Have you ever left your rheumatologist's office feeling like they were speaking an entirely different language? You're not alone. Medical terminology can be overwhelming, especially when you're newly diagnosed with rheumatoid arthritis and trying to make sense of your new reality. This episode brings together a remarkable panel of experts who offer something truly unique – they're not just healthcare professionals who treat RA, they live with it themselves. Dr. Saimun Singla, an integrative pediatric rheumatologist, shares how his own RA diagnosis shaped his holistic approach to patient care, while Stefanie Remsen (known online as the "Rheumatoid Arthritis Coach") brings her perspective as both a nurse practitioner and someone who's navigated RA for over a decade. Together, they break down confusing terms like DMARDs, biologics, and JAK inhibitors in simple, relatable language. You'll learn why your doctor might recommend one treatment over another, what "seronegative" actually means, and how to interpret those mystifying lab results. The panel explains the infamous "spoon theory" of energy management and tackles the often misunderstood concept of remission – is it really possible, and what does it look like? Beyond just clarifying terminology, our guests offer practical advice on communicating with your healthcare team, including how to approach research you've done without creating tension. They emphasize that while medications play a crucial role, factors like diet, stress management, and sleep are equally important parts of the treatment puzzle that often go undiscussed in short medical appointments. Whether you're newly diagnosed or have been living with RA for years, this episode will empower you with knowledge to better navigate your healthcare journey. Subscribe now and join our community of Spoonie Sisters who understand what you're going through. Stef: https://www.instagram.com/rheumatoidarthritiscoach?igsh=NWJqYTFhMDJzMjd6 Dr. Saimun Singla: https://www.instagram.com/rheum.to.grow.tx?igsh=dWs1Zj Send us a text 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 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 Keep your spoons close and support system closer. 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

Nutrition 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 becomes critically important when your body is rebuilding muscle tissue damaged during surgery. Jacqueline shares her expertise on anti-inflammatory foods that prepare your body before procedures and support healing afterward. For those struggling with the magnetic pull of comfort foods during recovery (hello, ramen and chips!), we offer satisfying, nutrient-dense alternatives that don't sacrifice flavor or satisfaction. The conversation takes a uniquely practical turn as we discuss pre-surgery meal preparation strategies. Learn about freezer-friendly options like homemade bean soups, smoothie packs, and protein-rich meals that require minimal energy when you're focused on healing. We introduce the concept of the "recovery busy box" - a toolbox containing not just activities to keep you occupied during downtime but also shelf-stable, nutritious snacks. Perhaps most valuable is our discussion about breaking free from restrictive nutritional patterns. Recovery becomes an opportunity to expand your relationship with food, trying new flavors and textures that support healing while bringing joy to the process. As Andy wisely notes, "We don't grow in comfort, we grow while we're being stretched." Whether you're preparing for an upcoming procedure or supporting someone through recovery, this episode offers a blueprint for using nutrition as a powerful healing tool. Share your own recovery nutrition tips with us, and remember - true healing happens when we give our bodies both the nutrients and the time they need to rebuild. https://www.instagram.com/loveitnaturalhealth?utm_source=ig_web_button_share_sheet&igsh=MWJ4ZThybWQzamU5dA== https://www.instagram.com/chronicallyiconiccoach?utm_source=ig_web_button_share_sheet&igsh=bnl3ZTVsbmxkbWps Send us a text 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 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 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 both her clinical expertise and lived experience, Melissa offers a unique dual perspective that bridges the gap between medical knowledge and the reality of living with chronic illness. Her story resonates with anyone who has felt dismissed by healthcare providers or struggled to connect seemingly unrelated symptoms into a coherent diagnosis. Despite facing significant health challenges affecting her heart, GI tract, and other systems, Melissa demonstrates how determination and self-advocacy can lead to both answers and purpose. The conversation explores practical daily management strategies—from heat therapy to Epsom salt baths—that help Melissa navigate her symptoms. She shares insights from her book "Invisible: A Nurse-Turned Patient's Resource to Living Well with Autoimmune Disease," which emerged from her desire to create the comprehensive resource she wished she'd had during her own diagnostic journey. The book combines medical education with practical tools for living well, making complex information accessible to patients at any stage of their journey. Beyond medical advice, this episode delivers a powerful message about finding meaning amid suffering. As Melissa beautifully states, "I've found purpose in my pain, and I encourage others to find theirs as well." Her approach emphasizes becoming your own "disease detective"—understanding your condition deeply while remaining open to both conventional and complementary approaches that might bring relief. This balanced perspective, coupled with her emphasis on humor, connection, and self-advocacy, offers a blueprint for thriving despite chronic health challenges. https://www.instagram.com/mmarquis78?igsh=MXFwYzlyZ2t3dnVqbg==Send us a text 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 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 Keep your spoons close and support system closer. 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 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 "everything right." Linnea opens up about her current flare, sharing how she's processing rage through unexpected methods (yes, screaming into pillows actually helps!). Meanwhile, Jen reveals her struggle with weight gain and confidence - how gaining 26 pounds affected not just her body but her willingness to show up online. The sisters discuss the complexity of watching others thrive on social media while you're suffering, and why sometimes taking a break from even your favorite accounts is necessary for mental health. The conversation takes powerful turns as they explore the pressure chronically ill people put on themselves to perform and push through. "Jesus took a break. Olympians take breaks. Surgeons take breaks. Why are you any different?" This permission to rest contradicts everything we've been taught about proving our worth despite illness. Whether you're battling an autoimmune condition, supporting someone who is, or simply trying to understand invisible illness better, this episode offers a rare glimpse into the emotional landscape of chronic illness. The sisters share practical strategies for flares, meal prepping when energy is low, and the life-changing power of choosing your response to challenges. Listen in and remember: behind every "I'm fine" often lies a complex struggle, but with proper support and self-compassion, we can navigate these challenges without sacrificing our authentic selves. Your spoonie sisters are here to remind you that you're enough - every day that ends in Y. Send us a text 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 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 Keep your spoons close and support system closer. 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

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 (Alison, Jen, Jewel, Linnea) with various chronic conditions share the weirdest, wildest, and most bewildering "cures" they've been offered by well-meaning friends, family members, and strangers. From the childhood friend who messaged after 20 years to suggest "eating right and exercising" would solve everything, to the truly outlandish experience of being led to a stranger's basement, given an apple, and anointed with oil to "pray away" rheumatoid arthritis—these stories will have you nodding in recognition or picking your jaw up off the floor. Why do people feel compelled to offer solutions rather than support? How does "medicine shaming" affect those who need medication to function? The conversation delves into how chronic illness becomes a masterclass in setting boundaries, educating others, and sometimes finding the humor in absurd situations. Experiences are validated, medical gaslighting is acknowledged, and fellow "spoonies" understand that wellness often requires multiple approaches working together, not miracle cures or quick fixes. Whether you live with chronic illness or love someone who does, this episode offers insight, comfort, and permission to respond to the next person who suggests dancing under the full moon with a smile, a boundary, or perhaps a witty comeback. Jenhttps://www.instagram.com/gracefully_jen?igsh=MW9iMTl0ZXMwZ2dleg==Linnea: https://www.instagram.com/perfectlyimperfectlinnea?igsh=bGFyZzJqcGc0eG5mAlisonhttps://www.instagram.com/alisons1616?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==Jewel: https://www.instagram.com/thelipedemacushie?utm_source=ig_web_buttonSend us a text 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 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 Keep your spoons close and support system closer. 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 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 his body began failing him. Listen to Stasia's powerful reframing of productivity – "sometimes just sitting and listening to birds is productive" – challenging our cultural obsession with constant activity. Rick shares his structured approach to resilience despite debilitating knee pain, while Lisa reminds us that emotional resilience ultimately comes down to choice in the face of uncontrollable circumstances. Together, they explore how chronic illness fundamentally reshapes self-worth, relationships, and identity. You'll hear candid admissions about wallowing (it's okay sometimes!), grief as necessary processing rather than pain itself, and the transformative power of finding purpose amid suffering. Their practical wisdom includes removing "I'm fine" from your vocabulary, setting time limits on pity parties, and preparing mentally for others' reactions to your invisible battles. This conversation goes beyond typical chronic illness discussions, diving into the psychological strategies that help warriors rise above their conditions. Whether managing pain yourself or supporting someone who does, you'll gain insight into the delicate balance between acknowledging suffering and choosing engagement with life despite limitations. Grab a cozy drink and join us for an honest, heartfelt exploration of how the mind can triumph over misery – not by denying pain, but by transcending it through purpose, community, and intentional mindset shifts. Steve Lovelace: https://www.instagram.com/arachnoiditis_unfiltered?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw== Rick Cram: https://www.instagram.com/rickcram?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw== Lisa Norris: https://www.instagram.com/autoimmunewarriorinfo?utm_source=ig_web_button_share_shee Send us a text 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 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 Keep your spoons close and support system closer. 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 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 emotional sides of their health journeys. From polymyositis and lupus to arachnoiditis and complex regional pain syndrome, these guests navigate vastly different diagnoses but share remarkably similar emotional challenges. The conversation begins with a profound exploration of grief – not as something to rush through, but as an intentional process essential for healing. As one guest powerfully frames it: "The level of pain needs to be matched by the level of intentionality." We hear how each person navigated the devastating loss of their former self and discovered unexpected gifts amid their suffering. As the discussion deepens, our guests share their personal toolkits for maintaining emotional equilibrium during symptom flares. From the endorphin rush of gentle movement to the comfort of loyal pets, these practical strategies showcase the resourcefulness chronic illness demands. Most striking is their collective wisdom about balancing optimism with honesty – finding ways to acknowledge suffering authentically while still nurturing hope and resilience. What emerges is a masterclass in transforming adversity into growth. Rather than pursuing toxic positivity, these warriors demonstrate something more nuanced: a hard-won ability to embrace both the darkness of chronic illness and the light of who they've become because of it. As one guest reflects, "I am thankful for my illnesses because they've made me a better person." Whether you're battling health challenges yourself or supporting someone who is, this episode provides invaluable insight into cultivating resilience when your body feels like it's betraying you. Ready to discover how to develop the mental fortitude that chronic illness demands? Listen now and walk away with strategies that can transform your relationship with pain. My Spoonie Sisters - YouTube My Spoonie Sist 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

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 arthritis. Our guest shares how being diagnosed completely transformed her perspective, teaching her to value her incredible resilience – waking up each day to face a body that doesn't always cooperate, yet somehow finding ways to adapt and keep going. This quiet, persistent strength rarely gets recognized but represents an extraordinary form of courage. We dive deep into how our intuition sharpens after diagnosis, helping us make smarter decisions about everything from travel plans to work commitments. Years of managing unpredictable symptoms teach us to read the fine print, seek flexibility, and anticipate our needs in ways others might never consider. This isn't about limitation – it's about making choices that allow us to enjoy life more fully. The discussion takes fascinating turns through time management strategies (work smarter, not harder!), relationship wisdom (valuing positive connections while setting healthy boundaries), and career navigation with chronic illness. Our guest shares her remarkable journey from physically demanding hospital work to finding her purpose helping others with RA, writing for major health publications, and embracing multiple careers that accommodate her health needs. Perhaps most inspiring is the revelation that being underestimated because of chronic illness can become its own kind of superpower – creating motivation to exceed expectations and the satisfaction of surprising others with what you can accomplish. Whether you're newly diagnosed 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 🎙 "Ever wanted to hug your autoimmune disease? Okay, maybe not—but with Giant Microbes, you totally can! These adorable microbes turn science into snuggles, featuring fun and educational designs of bacteria, viruses, and yes—even immune cells! They’re perfect for spoonies, medical professionals, or anyone who loves a quirky, cuddly take on health. Check out GiantMicrobes.com and find your new favorite pal today!" Use code SPOONIE20 at checkout for 20% off! 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 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 who uniquely understands both sides. Tanya brings not only her professional expertise as a registered dietitian with advanced credentials but also her lived experience of navigating multiple autoimmune conditions, including Hashimoto's thyroiditis, ITP, and lupus, for over 11 years. We explore how inflammation manifests in the body—sometimes surprisingly through weight gain and fluid retention—and practical ways to address it through diet and lifestyle modifications. Tanya shares powerful insights about becoming the expert in your own body, tracking your responses to foods, and developing a personalized approach to wellness that honors your unique needs and circumstances. Perhaps most valuably, Tanya offers hope through her guiding principle of "progress, not perfection," acknowledging that the journey with autoimmune disease is like "walking a mile with a weighted vest." Her compassionate, realistic approach makes healthy changes accessible to everyone, regardless of budget or cultural background. She breaks down common barriers to wellness with practical solutions for eating nutritiously on a budget, creating optimal sleep environments, and making sustainable lifestyle shifts. Whether you're living with an autoimmune condition or supporting someone who is, this episode delivers practical wisdom, genuine encouragement, and a roadmap for transforming health challenges into opportunities for deeper healing and self-discovery. Ready to take the first step toward better health? This conversation is your starting point. Home | The Lupus Dietitian https://www.instagram.com/thelupusdietitian?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw== Link to the September Group and use the discount code for My Spoonie Sisters: SPOONIESIS20% discount off the September Group: https://tanyafreirichnutrition.practicebetter.io/#/6199071639803308381092e7/bookings?p=6791142254576f7a7e3c15cf 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