Discover how you can manage the financial strain of chronic illnesses with insights from Laura and Jamie of Universal Drugstore, who join us for a candid discussion on medication affordability. We begin with Laura's heartfelt account of living with juvenile arthritis and how the exorbitant drug prices in the U.S. compare to more affordable international options. Learn about Universal Drugstore’s two-decade commitment to connecting patients with licensed international pharmacies, providing a reli...
Dec 23, 2024•25 min•Season 4Ep. 15
Maggie Bushway's journey of overcoming brain cancer and navigating life with seizures is nothing short of inspiring. Diagnosed at just seven, she turned her battle into a beacon of hope through storytelling. As she shares her experiences, Maggie reveals how her father's blog posts and her sister's artwork helped her transform her story into a heartfelt book during her chemotherapy treatments. Through sharing her own trials, Maggie sheds light on the struggle of living with a chronic illness, aim...
Dec 16, 2024•20 min•Season 4Ep. 14
What if you could recognize early signs of health deterioration before it turns into a crisis? Join us in a conversation with the inspiring couple, Jeff and Catherine Pearson, as they share their remarkable journey navigating life with hydrocephalus. Jeff, who has managed this condition since birth, and Catherine, his devoted caregiver, reveal their story of resilience through multiple surgeries and health challenges. Learn how their nonprofit, Hydro With Hope, and their online initiative, Invis...
Dec 09, 2024•58 min•Season 4Ep. 13
What if your greatest challenges could fuel your passion and shape your life's ambitions? Meet Lauren, a clinical assistant at Boston Children's Hospital, whose journey with Conradi-Hunermann syndrome and nearly 30 orthopedic surgeries has not only defined her path but also her dream of becoming a pediatric orthopedic surgeon. Through her eyes, we gain a profound understanding of the human side of medicine, where patient-centered care and advocacy go hand-in-hand. Lauren candidly shares how her ...
Dec 02, 2024•43 min•Season 4Ep. 12
After grappling with juvenile idiopathic arthritis since she was just 15, our guest Ali shares her transformative journey from denial to empowerment. Allie's story is one of incredible resilience as she navigates the physical challenges of surgeries and isolation, ultimately finding strength and purpose through movement. As a certified personal trainer, Ali now inspires others with similar limitations, offering hope through her personal experiences and highlighting the critical role of community...
Nov 25, 2024•1 hr 2 min•Season 4Ep. 11
Ever wondered how someone navigates the unique challenges of a thriving career in musical theater while dealing with the daily hurdles of a chronic illness? Chelsey, our inspiring guest, shares her remarkable journey from Vancouver to the American Musical and Dramatic Academy and how she's now making a difference as the Associate Director of Musical Theater at the 92nd Street Y in New York City. Diagnosed with rheumatoid arthritis in 2020, Chelsey didn't let her condition define her; instead, sh...
Nov 04, 2024•34 min•Season 4Ep. 10
Ever wondered how someone can transform adversity into strength? Meet Victoria, a spirited yoga instructor living with lupus, who shares her powerful journey from undiagnosed college student to a wellness advocate in the bustling city of New York. Experience her raw and emotional recount of confronting extreme fatigue, hair loss, and brain fog before finally receiving her life-changing diagnosis. Through her story, you'll understand the critical role her family's support played during her darkes...
Oct 28, 2024•36 min•Season 4Ep. 9
What if embracing your vulnerabilities could become your greatest strength? Join us for an enlightening conversation with Jake Mayers, a Lyme coach who has turned his chronic illness journey into a pathway for helping others. From dealing with dyslexia as a child to confronting the harsh realities of a Lyme disease diagnosis at 15, Jake's story is one of resilience and creativity. He shares how he balanced the fatigue and neurological symptoms of his illness with his passions for drumming and fi...
Oct 21, 2024•40 min•Season 4Ep. 8
Could you imagine enduring years of chronic pain, only to discover it was more than just "growing pains"? Meet Kait, our remarkable guest who shared her compelling journey from a passionate marathon runner to navigating a labyrinth of medical challenges. From femoral acetabular impingement to labral tears, Kait opens up about her painful experiences that began at the young age of 13 and escalated through her college years. In a candid conversation, she recounts her difficult first surgery, marke...
Oct 13, 2024•36 min•Season 4Ep. 7
Walking into my first rheumatology appointment back in 2011 was overwhelming, but looking back, the right preparation made all the difference. This episode is your guide to navigating the often confusing world of autoinflammatory arthritis. We discuss the crucial elements of your first rheumatology visit, from bringing a detailed medical history to understanding the importance of a thorough physical examination. Discover how patience is key in the complex journey of finding the right treatment, ...
Oct 09, 2024•6 min
What if a childhood filled with unexplained symptoms could finally find clarity years later? In this emotional and powerful episode, we journey with Jodi as she takes us through the highs and lows of her lupus diagnosis. From the age of four, Jodi's life was a whirlwind of mysterious rashes, fatigue, and pain. It wasn't until she was 13, with the help of the dedicated rheumatology team at SickKids in Toronto, that her family’s relentless quest for answers finally bore fruit. Jodi shares how her ...
Oct 06, 2024•35 min•Season 4Ep. 6
Imagine enduring years of unexplained fatigue, tendonitis, and carpal tunnel, only to find out these symptoms were just the tip of the iceberg. Join us as Stasha shares her enlightening journey to a rheumatoid arthritis diagnosis, revealing the red flags she overlooked and how a rheumatologist finally brought clarity to her persistent health issues. Discover her tips for managing RA, from biologics and physical therapy to lifestyle changes like staying hydrated and incorporating natural anti-inf...
Sep 29, 2024•28 min•Season 4Ep. 5
How do you turn a life of chronic pain and addiction into one of resilience and inspiration? On this episode of "My Spoonie Sisters," we welcome Andrea Vincent, a beacon of hope in the chronic pain community. Andrea opens up about her journey from high school misdiagnoses to her battles with osteoarthritis, hypermobility syndrome, and fibromyalgia. Her story takes a powerful turn when she discusses her struggle with alcohol as a coping mechanism and her triumphant path to sobriety in 2012. Motiv...
Sep 25, 2024•28 min
Are you curious about how patient participation can revolutionize medical research? Join us as we sit down with Emily, a dedicated bio-enthusiast and biotech professional, to uncover her journey from cell biology student to trailblazer at the biotech startup Immu. Emily shares her mission to make complex scientific concepts approachable, fueled by her passion for CRISPR technology and personal experiences that shaped her career. You’ll gain exclusive insights on finding reliable research studies...
Sep 22, 2024•41 min•Season 4Ep. 4
Have you ever wondered how a small act of kindness can make a colossal difference in someone's life? Join us for an uplifting conversation with Dawn, the inspiring founder of "Cards to Warriors," who transitioned from a radiation therapist to an advocate for patients and caregivers. Dawn shares her heartfelt journey and the touching story behind this incredible initiative that spreads joy and support through "Happy Mail" to those battling illness. Discover the various ways to get involved, from ...
Sep 15, 2024•33 min•Season 4Ep. 3
Have you ever wondered how one navigates life with multiple chronic illnesses? Meet Alexa Sutherland, who has been fighting against juvenile rheumatoid arthritis since she was just 15 months old and later fibromyalgia, ankylosing spondylitis, and the more recent Grave's disease diagnosis. Her journey is a testament to resilience and the power of community. Alexa shares her story, highlighting both the struggles and the support she's found, particularly through memorable connections formed at sig...
Sep 09, 2024•51 min•Season 4Ep. 2
Can you imagine the frustration of battling a chronic illness and not finding the right treatment? On our milestone 100th episode, we reconnect with the remarkable Alison, who was diagnosed with rheumatoid arthritis at the age of 28. Her journey from struggling with an unhelpful specialist to meeting the incredible Dr. Tony is nothing short of inspiring. Despite the bittersweet news of Tony's upcoming retirement, Alison's story is a testament to the impact a dedicated and compassionate doctor ca...
Sep 01, 2024•38 min•Season 4Ep. 1
Ever felt overwhelmed by a health condition misdiagnosis? In this heartfelt episode, join me, Gracefully Jen, as I recount my personal journey with psoriasis, starting from the first sores that appeared on my ankle back in 2016. Initially mistaken for a skin infection, my condition went through a series of misdiagnoses until a visit to my rheumatologist revealed the surprising truth: a rare form of psoriasis called pustular psoriasis, caused by my TNF inhibitor treatment. Listen as I share the e...
Aug 19, 2024•9 min
Curious about how to navigate life with rheumatoid arthritis while maintaining a positive outlook? Join us as we reconnect with Cheryl Crow with Jen Weaver, spirited advocates and fellow Spoonies, who share her heartfelt journies. Jen opens up about the severe allergic reactions she's faced with TNF inhibitors leading to pustular psoriasis, offering a candid look at her daily routines and the importance of personalized treatment plans. Her story is one of resilience, community, and finding unexp...
Jul 29, 2024•46 min
What if you were diagnosed with a chronic illness at the age of five? In this heartfelt episode, we sit down with Elizabeth, who opens up about her lifelong battle with lupus. From the early signs of hair loss and severe fatigue to the relentless support of her mother and medical team, Elizabeth’s story is one of resilience and hope. She takes us through the evolution of her treatment—from the initial, intensive regimens to a more stable and manageable routine that now involves just three low-do...
Jul 22, 2024•24 min•Season 3Ep. 44
Ever wondered how small lifestyle changes can significantly impact chronic illness management? Join us for an enlightening conversation with Patrick, a dedicated Florida-based pharmacist who specializes in reducing medication burdens for those with chronic illnesses and autoimmune diseases. Patrick shares his holistic approach to healthcare, which includes a meticulous review of medication lists, medical histories, and lab results to identify nutrient depletions and lifestyle adjustments. He als...
Jul 15, 2024•43 min•Season 3Ep. 43
What if the power to overcome a life-threatening illness lies within your mindset? Join us for an enlightening episode featuring mindset coach Sharon Banyas Hefetz, who bravely shares her journey of battling an aggressive form of multiple myeloma. Diagnosed at just 45, Sharon's story is not just one of medical treatments but of the incredible strength of positivity and self-advocacy. Discover how she navigated a rigorous treatment plan and achieved remission in a mere six weeks, all while highli...
Jul 08, 2024•38 min•Season 3Ep. 41
Can you imagine going from running marathons to fighting for a diagnosis that doctors initially dismissed as stress? Kristine has lived this journey, and she shares it with us in a gripping conversation about her struggle with chronic illness and rare diagnoses. From the first strange tweak in her foot to the emotional toll of being invalidated by medical professionals, Kristine's story is one of resilience and the critical importance of having an advocate in the healthcare system. Her mother-in...
Jun 30, 2024•43 min•Season 3Ep. 40
Ever wondered if there's more to managing chronic illness than just medication? Discover the transformative journey of Josie, a fervent advocate for natural treatments for autoimmune diseases, as she shares her powerful story. From childhood ailments to grappling with rheumatoid arthritis and Hashimoto's, Josie's quest for healing led her to a holistic center in Denver, where she found that emotional well-being was key to her recovery. Hear how she unraveled the emotional roots of her conditions...
Jun 17, 2024•45 min•Season 3Ep. 39
When Jessica Mitchell, a health coach driven by a deeply personal narrative, steps into our podcast venue, the air fills with an undeniable energy of transformation and hope. Her sister's untimely passing ignited a fire in Jessica to champion the cause of lifestyle disease prevention, and she's here sharing her wisdom on how to forge a path towards sustainable health. The conversation we engage in goes beyond the typical chatter about diets and workouts; we pierce the heart of what it truly mean...
Jun 10, 2024•54 min•Season 3Ep. 38
Are you ready to transform how you navigate the daily hurdles of arthritis? Join me, Gracefully Jen, for practical advice that promises to enhance your daily living with arthritis. Overcoming the challenges of chronic illness is no small feat, but with our latest episode, you'll learn five key strategies to rework your routine for the better. We focus on making each day not just bearable but more fulfilling—celebrating the little triumphs and ensuring your well-being never takes a back seat. Fro...
May 27, 2024•5 min
Navigating life with an autoimmune condition can feel like a solo journey, but it doesn't have to be. I had the pleasure of bringing in Annie, my health and wellness coach, who's an expert in turning living with autoimmune diseases into thriving despite them. Together, we unpack the art of crafting wellness plans that are as unique as your fingerprint, offering hope and actionable advice for anyone aiming to steer their health in a positive direction. Through our candid conversation, I open up a...
May 20, 2024•46 min•Season 3Ep. 36
As your host, Jen, I've witnessed firsthand the transformative power of getting the right diagnosis - it's a journey that can be as tumultuous as it is enlightening. That's why I invited Olivia Dennis to the show, where she bravely recounts her quest through the tangled healthcare system, grappling with the often invisible web of IBS, anxiety, OCD, and autism. Olivia's candid narrative strikes a chord, revealing the emotional toll of being misunderstood and the subsequent liberation of understan...
May 13, 2024•43 min•Season 3Ep. 35
When your world is turned upside down by chronic illness, finding humor and connection can be your lifeline. That's exactly what happened when Jewel, the effervescent @ thelipedemacushie , joined me for a chat that'll make you laugh, and nod along with understanding. We dove into Jewel's experiences with Cushing's disease, her surgeries, and the daily dance with adrenal insufficiency. There's something incredibly powerful about sharing stories of resilience, and Jewel's candidness about her spin...
May 05, 2024•41 min•Season 3Ep. 34
Leila's voice crackles with emotion as she recounts the moment her life took an unexpected turn with the diagnosis of Lupus and Sjogren's disease. Her candid narrative details the trials and triumphs of living with these stealthy autoimmune diseases, from the early signs that something was amiss to the latest treatment that's been her saving grace. We're honored to have her on our show, sharing invaluable insights into the world of chronic illness, emphasizing the importance of self-advocacy, an...
Apr 29, 2024•29 min•Season 3Ep. 33
