Arthritis Life

In this episode, Cheryl discusses the major themes in Taylor Swift’s music that relate to the chronic illness experience, from the “Haunting” experience of a medication not working anymore to my own “Anti Heroic” immune system to the constant question of “Are We Out of the Woods yet?” when in a flare up.  After weaving in and out her own experience with rheumatoid arthritis and anxiety with listener contributions, Cheryl concludes by exploring the the “State of Grace” we experience when we connect with the chronic illness community. Throughout, she shares how she’s learned to accept what’s out of her control and the empowerment of acknowledging that while my journey might have been rocky, “Long Story Short: I Survived.”  Medical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.Episode SponsorsRheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! For full episode details including a transcript and video:Go to the episode page on the Arthritis Life Website! 

Cheryl and Dr. Hosey delve into the importance of accepting the unpredictability of life with chronic illness and redefining what constitutes a "normal" life. This includes a discussion about resilience, mindfulness, and the potential for personal growth in the face of chronic health struggles.Dr. Hosey's shares how she turned her pain into purpose, referencing her upcoming book, 'Girl on a Gurney: Trading my White Coat for a Hospital Gown’. She also provides tangible solutions for medical gaslighting, including medical student education in this phenomenon.** Medical disclaimer:All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.Episode Sponsors** Episode SponsorRheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now!*For full episode show notes, go to the show page on the Arthritis Life website at: https://arthritis.theenthusiasticlife.com/2024/01/05/from-medical-gaslighting-to-a-sjogrens-diagnosis-dr-rebecca-hoseys-story/

Discover the multifaceted impact of rheumatoid arthritis beyond joint pain. Learn about navigating social challenges and building connections within a chronic illness community. Embrace the uncertainty inherent in autoimmune conditions, and gain insights into the importance of mental health. Tackle the emotional toll of medical gaslighting while advocating for better understanding from healthcare providers. Finally, explore self-management tips to empower your journey, transforming the condition into a learnable challenge with community support.

This is a follow up to episode 45: “What’s it like to be on Methotrexate for Rheumatoid Arthritis or Psoriatic Arthritis?”  Paulina, Jenny, Ali, and Ananthi share what’s changed and what has stayed the same with their medications, including whether they’re still on methotrexate. They also  reflect on how they’ve navigated the ups and downs of chronic illness life and share how grief and joy can co-exist. They also highlight the importance of  finding a supportive community with shared experiences. They also discuss their choices around how much to share on social media about their experiences.Paulina, Jenny, Ali, and Ananthi each share wisdom that has guided them along this nonlinear journey; encouraging self-care, advocating, celebrating small victories, and approaching life one day at a time. They conclude with a discussion about how to balance acceptance and adapting with a “fixing” mindset.Medical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.Episode SponsorsRheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! For full episode details including a transcript and video:Go to the episode page on the Arthritis Life website. 

Dr. Isabelle Amigues, a skilled rheumatologist specializing in rheumatoid arthritis, shares her passion for patient care and the importance of accurate diagnosis. She discusses the complexities of misdiagnosis and how it impacts treatment. The conversation highlights the possibility of remission through personalized care and newer therapies, emphasizing a collaborative approach between doctor and patient. Dr. Amigues encourages living life fully despite challenges and stresses the emotional rewards of managing RA effectively.

Emily explains what post-exertional malaise is, and highlights the challenges associated with diagnosing and managing ME/CFS. Emily emphasizes the need for personalized care and the critical role of patients in advocating for their own health. This conversation underscores the significance of creating strong support networks for people living with ME/CFS, as well as the broader chronic illness community. They also highlight the value of sharing personal stories to raise awareness and bring about policy changes. Episode at a glance:Advocacy and awareness: Cheryl and Emily discuss the power of patient stories in driving advocacy efforts, and the importance of raising awareness of the complexities of living with chronic illness.Symptom management: Post-exertional malaise, fatigue, pain, and cognitive issues often require a dynamic approach to management. This conversation delves into the importance of tailoring treatment to the specific condition/individual needs, and strategies such as pacing activity.Coping strategies and mental health: Having self-compassion is a key part of coping with chronic illness. Additionally, emotional support aids well-being and therapy can be a useful resource.Importance of having a support network: Cheryl and Emily emphasize the value of connecting with others who have similar conditions to create a sense of community, as well as accepting support from friends, family, and healthcare professionals.Patient/healthcare provider relationship: Emily shares the challenges of obtaining accurate diagnoses and appropriate medical care for chronic illnesses, especially for lesser-known conditions like ME/CFS. Building collaborative, patient-centered relationships with healthcare providers who are willing to listen, learn, and explore treatment options can make a big difference in managing complex chronic illnesses.Medical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.Episode SponsorsRheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! Speaker Bios:Emily Taylor Vice President of Advocacy and Engagement at Solve ME, Emily brings to the organization over fifteen years of policy, organization, and advocacy experience in both the non-profit and government sectors. With five years’ experience on Capitol Hill, Emily contributes a keen understanding of both state and federal policy processes while cultivating strong grassroots organization and patient representation. Prior to joining the Solve M.E., Emily served as the director of policy and advocacy for an award-winning autism organization. There she spearheaded major overhauls in disability, early intervention, and education policies. She is also a veteran of several successful electoral campaigns, where she trained others in effective social media and online organization. She received a B.A. with honors in politics and international relations from Scripps College in Claremont and earned her M.A. in American politics from Claremont Graduate University. Emily draws inspiration from her mother who has battled ME/CFS as well as chronic autoimmune and thyroid conditions since 1999.Cheryl CrowCheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.For full episode details including a detailed transcript and video:Coming soon on the Arthritis Life Website. 

Cheryl and Brianna discuss the challenges and the benefits of sharing your chronic illness story publicly on social media, including how they deal with both positive and negative feedback from a growing audience. They also discuss the positive impact of finding support and inspiration online. Brianna shares her involvement with the Arthritis Foundation and the Lupus Foundation, highlighting the importance of giving back and helping others in the community. The role of support groups, camps, and patient advocacy organizations in providing a sense of community and connection for individuals living with chronic diseases is highlighted.  Cheryl and Brianna also discuss the value of adapting and accepting one's condition to live a fulfilling life. Finally, they emphasize the importance of acceptance and adaptation in thriving with rheumatic diseases.Medical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.Episode SponsorsRheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! For full episode details including a video and transcriptGo to the episode page  on the Arthritis Life website for full details! 

Summary:Cheryl and Tyra delve into Tyra's unique journey as a Black woman living with rheumatoid arthritis (RA) and her inspiring efforts to create a documentary about her experiences. Tyra, an actress and filmmaker, shared how her struggle with RA led her to embark on the documentary project. She discussed the challenges of living with chronic pain, the lack of representation for people of color with RA in media, and the need to make creative spaces more accessible.Tyra emphasizes the importance of re-parenting oneself and adopting a compassionate attitude toward one's body when dealing with chronic illness. She also touches on the significance of finding joy in love, laughter, and supportive communities despite the pain. Cheryl and Tyra discussed the complexities of living with RA, including the physical and emotional challenges, and the importance of representation and empathy in media. Medical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.Episode SponsorsRheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! For Full Episode Show Notes:Go to the episode page on the Arthritis Life Website for detailed show notes including a full transcript and video of this conversation.

Summary:Chery and Laura discuss the importance of connecting with others in the autoimmune community to create a sense of belonging and empowerment.They delve into the diverse offerings at the Autoimmune Association’s upcoming event: the Autoimmune Community Summit. This includes sessions on managing pain and fatigue, communicating with healthcare teams, and exploring dietary strategies, all aimed at empowering patients with autoimmune conditions. Throughout their conversation, Cheryl and Laura underscore the pivotal role of community and empowerment in thriving with autoimmune diseases, making it clear that the Autoimmune Association's annual summit is a place where patients can find connection, knowledge, empowerment and support on their autoimmune journey.Medical disclaimer:All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.Episode SponsorsRheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected.  See all the details and join the program or waitlist now! For full episode details including transcript & VideoGo to the episode page on the Arthritis Life Website.

Episode summaryRheumatologist Dr. Buckner emphasizes the importance of early diagnosis and reassures patients that, although there might not be a cure yet, advancements in treatments have significantly improved the quality of life for individuals with autoimmune diseases. She highlights the crucial role of patients in research partnerships, where their input and participation are highly valued, leading to better understanding and management of these conditions.Dr. Mikacenic emphasizes the importance of viewing the patient-researcher relationship as a partnership. She discusses the potential benefits of participating in research studies, not only in drug trials but also through donating samples and providing clinical information.Both doctors express optimism about the future, believing that a cure for autoimmune diseases is possible with the rapid growth of knowledge about the immune system and targeted treatments on the horizon. They emphasize the significance of teamwork between patients, caregivers, and researchers, fostering hope and improving the lives of those affected by autoimmune conditions.Medical disclaimer:All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.This episode is brought to you by:Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now at  https://arthritislifeschool.thinkific.com/For full details including a video and transcript:See the episode page on the Arthritis Life Website.