Take a Pain Check

Joel Nelson, a passionate advocate in the rheumatic disease community, shares his journey with Juvenile Idiopathic Arthritis (JIA) on the podcast. He discusses the challenges of obtaining a diagnosis and the importance of self-advocacy, especially from a young age. He reflects on the emotional rollercoaster of medication trials and their effects on mental health, emphasizing the stigma surrounding both physical and mental aspects of chronic illness for men. Joel also explores the impact of COVID-19 on healthcare access and his personal life, including parenting with arthritis. He discusses having no transition, experiences in the clinic which impacted his mental health, and the change in health care system over time in the UK. His initiatives, like the Joel Nelson Podcast and the Pain Company, show his commitment to patient-centered care and community support, making him an inspiring voice in chronic illness advocacy.

Join us for this week’s episode of Take a Pain Check as we welcome Michelle Murchison, who shares her inspiring journey with Juvenile Rheumatoid Arthritis (JRA). Michelle opens up about her diagnosis story, the challenges she faced with doctors, and the array of medications and surgeries she underwent. She reflects on her childhood experiences, navigating life with a chronic illness, and the impact of nutrition, lifestyle, and hormones on her condition. Michelle also discusses the mental health aspects of living with JRA, the financial burdens, insurance coverage and how her condition has shaped her family life. Finally, we delve into her children’s book, “Stars on my Knees,” exploring the inspiration and process behind it.

In this episode of Take a Pain Check, we are joined by Ella Rabin, who shares her journey with Juvenile Arthritis (JA). Ella introduces herself, discussing her education, hobbies, and future aspirations. She details her diagnosis story, including the initial symptoms and changes over time, and speaks about her family history with arthritis, particularly her mother's experience. Ella emphasizes the importance of a strong support system from family and friends, addresses misconceptions about arthritis, and discusses the impact on her activities like cheerleading and tap dancing. She also shares her experiences with school accommodations and the significance of self-advocacy. Furthermore, Ella talks about her involvement with the Arthritis Foundation and her own initiative, Advocacy in Action. The episode concludes with Ella offering advice for newly diagnosed kids and recommending resources for learning about JA.

This week’s podcast episode features Carissa Peck, who discusses her journey with mixed connective tissue disorder, encompassing lupus and rheumatoid arthritis (RA). The conversation begins with Carissa’s introduction and background, followed by her diagnosis story, including initial symptoms and their progression. Carissa shares her experiences with various treatments, from medications to other treatments. She describes managing flare-ups and the impact of her condition on relationships, emphasizing communication and support. The discussion also touches on the challenges posed by the US healthcare system, particularly financial burdens and insurance issues. Carissa highlights lifestyle changes, such as diet and exercise, that have improved her well-being. Finally, she talks about her advocacy work on TikTok, sharing her condition with a broader community and offering advice to young people with similar experiences.

In this episode of Take a Pain Check, Amanda Chay discusses her journey with lupus and Sjogren's, sharing the challenges of getting diagnosed, advocating for herself, and the emotional impact of learning about and accepting her chronic illnesses. She highlights the importance of a strong support system, effective doctor-patient relationships, and the role of medications. Amanda also talks about maintaining an active lifestyle, the significant impact of diet on her symptoms, and managing her mental health. She reflects on the unique experience of being both a lupus patient and a mother to a daughter with lupus, offering advice to others in similar situations. Additionally, she discusses her book, "The Girlfriend’s Guide to Lupus," and offers advice to those newly diagnosed with a chronic condition and to parents who, like her, have a child with the same illness.

EIn this episode of Take a Pain Check, host Natasha introduces Emily Wahl, who bravely shares her journey living with Juvenile Rheumatoid Arthritis (JRA), Sjogren’s syndrome, Lupus, Pulmonary Arterial Hypertension, and FSGS. Emily candidly discusses her diagnosis story, recounting childhood experiences with arthritis and the challenges of managing various medications. She reflects on how her health conditions influenced her career choices and relationships, especially during pregnancy. Emily advocates for patients like herself, emphasizing the importance of a supportive care team and sharing coping strategies for the emotional weight of new diagnoses. Additionally, she offers insights into navigating pregnancy with chronic illnesses and provides valuable advice for managing multiple conditions effectively.

In this week's episode of Take a Pain Check, Carin Lin joins as a guest to share her journey as a parent of a child with Kawasaki Disease (KD), focusing on her son Isaiah's experience. Carin recounts Isaiah's diagnosis story, shedding light on the symptoms that led them to seek medical attention and the challenges they faced during the diagnosis process. The discussion delves into what Kawasaki Disease is, its symptoms, and how it presents itself in children like Isaiah. Carin shares her advocacy journey, emphasizing the importance of pushing for a diagnosis and educating oneself about the disease after diagnosis. Isaiah's treatment journey, including medications and major surgeries like double bypass surgery, is explored. Carin discusses preparation, the recovery process, and her role in supporting Isaiah. The lifestyle adjustments Isaiah has made and the accommodations needed, especially in school and extracurricular activities, are discussed, highlighting the importance of family support. Carin talks about her involvement in founding Kawasaki Disease Canada is explored, along with the organization's mission and the changes observed in KD recognition over time.

Welcome back to this week's episode of Take a Pain Check! Today, I'm thrilled to have Delane Linkiewich with us, sharing her journey with chronic pain and the incredible insights she's gained along the way. Delane opens up about her experiences, from the car accident that started it all to the psycho-social impacts she's navigated. We delve into the various physical therapies she's tried, her medication regimen, and how she managed treatment during the challenging times of the pandemic. Growing up with chronic pain wasn't easy, and Delane shares how she had to step back from activities at times. She also sheds light on misconceptions about chronic pain and her time in the clinic until she transitioned to adult care. As a passionate advocate, Delane discusses her involvement in research, including her master's work on peer support in pediatric chronic pain. Learn about her initiatives with the Chronic Pain Network, her role in the 'Putting the Pieces Together Conference,' and valuable tips she offers for those living with chronic pain.

In this week's episode of Take a Pain Check, we welcome Ayesha as our special guest, sharing her incredible journey of diagnosis, advocacy, and touching moments of kindness. Ayesha recounts her initial symptoms that led her to seek medical help, navigating a complex medication regimen, and the ups and downs of her health journey. She reflects on her determination during her undergraduate years, the challenges of planning a wedding while managing her health, and a difficult experience in the emergency room. Ayesha also shares her memorable experience attending Taylor Swift's Eras tour, even in a wheelchair. During the episode, Ayesha updates us on her current health status, medication routine, and mental well-being, offering hope and valuable insights to listeners. She shares Taylor Swift's response to her Tumblr post, and how she met her in person. The conversation shifts to Ayesha's TikTok journey, where she discusses how she creates 'Get Ready with Me' videos, and she discusses her experience living with lupus, highlighting moments of inspiration and the positive impact on her community.

In this episode of Take a Pain Check podcast, we delve into the life of Alexander Levine, unpacking his journey with Ankylosing Spondylitis (AS) from diagnosis to shoulder surgery and beyond. Alex shares the story of his diagnosis, detailing life before AS and the challenges he faced in his career, particularly in the health and fitness industry. We explore the knowledge gap between fitness and AS, how his perspective on fitness shifted post-diagnosis, and the impact of physical therapy on his symptoms. Alex also opens up about his shoulder surgery, discussing the pain and recovery process. He sheds light on how friendships and relationships evolved, the support he received from loved ones, and the pivotal role of the chronic illness community. He also talks about managing a family and newborn with a diagnosis. As a fitness enthusiast and owner of a virtual personal training business, Alex shares insights into his unique training style tailored for those with AS, addressing the mental blocks and challenges that come with chronic illness. The episode wraps up with valuable advice from Alex on getting started in the fitness industry with a chronic condition and changing mindsets for youth already interested in fitness.