Avsnitt
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Both Jed and Cheryl emphasize the importance of finding a supportive community and adjusting personal goals, as chronic illness often reshapes life plans. Cheryl also highlights the power of acceptance and resilience, and together they underscore the value of living fully within one’s limitations, embracing good days, and finding joy in achievable dreams.
Episode at a glance:Chronic Illness Challenges: Jed shares his experiences living with ankylosing spondylitis, a chronic inflammatory condition that impacts daily routines and long-term goals.Balancing Work and Health: Jed and Cheryl discuss the practical tools and strategies he uses to manage pain and fatigue while teaching, including compression gloves, heating pads, and a massage recliner.Finding Community Support: Jed and Cheryl discuss the importance of connecting with others who understand the chronic illness experience, providing both emotional support and practical advice.Redefining Goals and Expectations: Cheryl discusses how chronic illness reshapes personal and professional goals, encouraging resilience and adaptability.Acceptance and Joy in Small Wins: Both Jed and Cheryl emphasize embracing good days and celebrating small achievements, focusing on a fulfilling life within the boundaries of chronic illness.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!
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This is a re-release of Arthritis Life Podcast Episode 38, which pulled from a live webinar Cheryl presented in June 2021. To view the recording of the presentation which includes the slides, please go to bit.ly/flaretools (case sensitive).
Episode at a glance:Updated intro from 2024: Cheryl introduces some additional resources for managing and preventing flare ups! Definition of a Flare-Up of a rheumatic disease (which includes ankylosing spondylitis, psoriatic arthritis and rheumatoid arthritis) What causes Flare-Ups, and why is it so important to discover our own unique flare triggers? Focus on Pain: tools to prevent pain and reduce existing painFocus on Fatigue: tools to prevent and reduce fatigue Focus on Stress: ways to decrease stress levels & cope with existing stress Focus on symptom tracking & Concluding Thoughts: how symptom tracking helps you discover your triggers 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.
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Saknas det avsnitt?
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Cheryl and Ayesha also delve into the devastating impact fatigue can have on their lives and share tips for managing and preventing fatigue. Above all, they urge listeners to validate their own feelings and aim for full acceptance, with the hope that brighter days are ahead.
Episode at a glance:Ayesha's Diagnosis Journey: Ayesha opens up about her personal experience living with psoriatic arthritis and reflects on the role of race and gender on her treatment. She, highlights the importance of advocating for yourself, especially when navigating a chronic illness without a medical background.Advocacy for Black Women: As the founder of SistasWithPsoriasis and The PsoriaSis Collective, Ayesha has dedicated her platform to advocating for black women with psoriasis and psoriatic arthritis. She creates safe spaces for them to connect, support each other, and share their experiences.The Role of Fatigue: Ayesha and Cheryl reflect on what fatigue feels like for them and how it impacts them on a daily basis. Self-Care Tools: Ayesha’s favorite self-care tool? Her yoga mat! She starts every day with a stretch, using it as a moment of peace and wellness.Empowering Words for Newly Diagnosed: She shares heartfelt advice for newly diagnosed individuals, stressing the importance of validating your own feelings and asserting yourself in medical situations.Words to Live By: Ayesha's mantra, centers on putting your spiritual self first, believing that everything else will fall into place. She also encourages full acceptance of life’s challenges, reminding listeners that "the only way through is through."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!
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Cheryl and Sarah also discuss practical strategies for managing RA symptoms while maintaining productivity, from pacing your workday to leaning on support systems. They also explore how to prioritize self-care and flexibility, so you can successfully lead a business without compromising your health. This episode offers valuable insights for anyone navigating business ownership with RA.
Episode at a glance:Sarah’s rheumatoid arthritis story: Sarah shared what it was like to get diagnosed in her 20s and overviews her up and down treatment journey over the years.How Sarah’s Wedding Day Splint Led her to Develop a better joint support company: the story behind the popular Grace & Able joint support company!Balancing RA Symptoms with Entrepreneurship: Sarah shares tips for managing flare-ups, joint pain, and fatigue while meeting business demands.Practical Strategies for Productivity: Sarah shares tips including pacing during the workday, setting boundaries, and using tools to stay on top of tasks.Importance of Support System: Cheryl and Sarah discuss the role of team members, outsourcing, and community support in sustaining a business.Prioritizing Self-Care: Tips for integrating rest, stress management, and health routines into a busy schedule.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.
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: -
After defining what remission is, Cheryl and Eileen take a deep dive into the importance of finding the right medical treatments and aiming for remission.They also dive into how small lifestyle changes, like setting boundaries and pacing yourself, can help you feel a sense of control over your symptoms.
If you're feeling overwhelmed by your diagnosis or like remission will never be in your reach, their stories will remind you that you're not alone, and life can be fulfilling with the right approach.
Disclosure: The “Talk Over RA” campaign is supported by Abbvie. Arthritis Life Podcast host Cheryl Crow receives no monetary compensation for this work, but Eileen, who is featured in this interview, does.
Episode at a glance:Personal Journeys: Real stories from Cheryl and Eileen about their experiences with RA and how it has affected their lives.Hope for Remission: Insightful discussions on what remission means and the steps towards achieving it.Managing Symptoms: Tips on dealing with pain, fatigue, and emotional challenges associated with RA.Self-Care Strategies: Practical advice on pacing oneself, setting boundaries, and building a supportive community.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: https://arthritis.theenthusiasticlife.com/2024/10/17/what-does-remission-mean-to-patients-with-eileen-davidson/
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Cheryl and James also touch on the emotional ups and downs of living with RA, and share practical tips for managing symptoms and staying active. Ultimately, they emphasize the importance of community and connection in navigating life with RA.
Episode at a glance:James’ diagnosis story: James shares his journey to his rheumatoid arthritis and ankylosing spondylitis diagnosisTraveling the World with Arthritis: James shares tips for traveling with arthritis.Male Experience in Chronic Illness Community: James discusses his decision to share publicly and reflects on what it’s like being a male figure in the online chronic illness community.Understanding the Emotional Impact: Cheryl and James reflect on the feelings of confusion and frustration that often accompany an RA diagnosis, emphasizing the need for self-compassion and patience during this transition.Practical Strategies for Management: Cheryl and James share practical tips on managing symptoms, including dietary changes, incorporating gentle exercise, and utilizing mindfulness practices to help improve overall well-being.Building a Support Network: The episode highlights the significance of connecting with others who understand the struggles of RA, discussing how forming a community can provide encouragement and shared experiences.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: https://arthritis.theenthusiasticlife.com/2024/10/10/traveling-the-world-with-ra-and-as-james-hollens-story/
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Episode at a glance:Jessica’s Rheumatoid Arthritis Story: How Jessica got diagnosed and what her treatment journey has been likeExploring different treatment options: Jessica shares the ups and downs of trying different diets and lifestyle methods to manage RA, along with medicationsHumor as a Coping Mechanism: Jessica shares how she started improv and stand up comedy, and how humor helped her cope with rheumatoid arthritis. She also explores what it was like to have a joke about rheumatoid arthritis go viral on social media.Ways to Manage Stress: Strategies for managing stress, maintaining a positive mindset, and connecting with others who understand life with RA.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.
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Elena also shares her favorite resources for living well with arthritis, including supportive footwear brands, arthritis gadgets, and inspirational books. Shes hares practical tips like finding the right shoes to support your joints, using dictation tools to reduce hand strain, and the importance of accepting that some pain may persist while still being able to live a fulfilling life.
Throughout the conversation, Dr Elena and Cheryl emphasize the value of prioritizing what's important and showing up for family, work, and health—even when symptoms make things challenging. If you're newly diagnosed with RA, this episode offers comforting, actionable advice and a reminder that you're not alone in navigating this journey.
DISCLAIMER FOR THIS EPISODE:
The views expressed are those of the author and do not reflect the official policy or position of the US Air Force, Department of Defense or the US Government*
Episode Themes:Personal Challenges and Advice: Elena shares her experience with managing rheumatoid arthritis and vasculitis and discusses practical tips for newly diagnosed individuals.
Useful Products and Tools: Cheryl and Elena discuss favorite footwear brands and how they impact daily comfort and highlight dictation software as a game-changer for writing tasks.
Living Well with Rheumatoid Arthritis: Elena emphasizes focusing on doing what's most important, even with some discomfort, to achieve a fulfilling life.
Inspirational Mantras: Elena shares her favorite motivational sayings and discusses how this perspective helps her manage daily challenges.
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.
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Dr. Ma advises people with rheumatoid arthritis to start small, listen to their body, and use her "START" guide to gradually build an active routine that feels right for you. She also explains how the START guide is a useful tool for clinicians like physiotherapists and occupational therapists to support patients in developing sustainable strength training routines.
Dr. Ma also shares her favorite mantra, "control the controllables and enjoy the enjoyables," which is a great reminder to focus on what you can manage and find joy in the little things. Plus, Cheryl and Dr. Ma dive into how having a supportive community—whether it’s big or just a few people—can make a huge difference in thriving with RA!
Episode Themes:
Physical Activity with RA: Dr. Ma shares how you should listen to your body’s needs and pace yourself to avoid overexertion. Physical activity is more than exercise; it’s about reducing sedentary time and increasing daily activity.
Kinesiologist’s Approach to Movement: Using the 24-Hour Movement Guidelines, Dr. Ma talks about the balance of physical activity, sleep, and reducing sedentary behavior, all while accounting for the challenges posed by RA.
The Importance of Community: Cheryl and Dr. Ma discuss how community is key for thriving with RA, but it looks different for everyone. Whether it’s a large group, one-on-one support, or reaching out to a healthcare professional, connection makes a difference.
Inspirational Mantra: Dr. Ma shares her favorite saying: "Control the controllables and enjoy the enjoyables." Focus on what you can manage and find joy in the present moment.
Empowering Mindset: Cheryl and Dr. Ma discuss how RA management is about becoming your own scientist and finding what works best for you.
Mental Shift on Exercise: Cheryl and Dr. Ma explore the idea of reframing exercise as something empowering, rather than just a necessity, and how staying active can contribute to feeling more in control of your health.
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.
For full episode details include a transcript and video:Go to the episode page on the Arthritis Life Website.
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Through his experiences, Dr. Kaleb offers practical advice on navigating life with rheumatoid arthritis, focusing on self-management strategies like getting enough rest and using ergonomic tools.
He and Cheryl also dive into pain management, discussing evolving research on the potential benefits of cannabis. Dr. Kaleb’s personal insights into balancing work and life offer hope for finding purpose and joy despite the challenges of living with arthritis. Together, they emphasize the importance of living meaningfully through activities like board games, time with family, and staying connected to a supportive community.
Episode Themes:Personal Experiences and Resilience: Dr. Kaleb’s shares his personal journey with juvenile idiopathic arthritis, from diagnosis at age 3 to today. Self-Management & Lifestyle: Cheryl & Dr. Kaleb discuss strategies for managing physical pain through ergonomic tools, proper footwear, and weight management.Importance of Sleep: The critical role of good sleep in managing chronic illness, including the impact of sleep apnea and the benefits of CPAP therapy.Managing a dual role of patient and researcher: Dr. Kaleb reflects on his decision to “go public” with his diagnosis of JIA after being known as an arthritis researcher, and discusses the pros and cons of sharing your story publiclyCannabis and Pain Management: The evolving research and patient experiences with cannabis as a tool for managing chronic pain, despite its legal and research limitations.Misinformation and Evidence-Based Care: The challenge of navigating biased or incomplete information about treatments and the importance of relying on evidence-based medicine.Arthritis Research and the Role of Learning from the Patient’s lived experience: Dr Kaleb explains the importance of the FORWARD databank.com for ongoing research to improve patient outcomes. Entertainment and Personal Interests: The role of hobbies, such as board games and movies, in providing enjoyment and coping with chronic illness.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.
For full episode details include a transcript and video:Go to the episode page on the Arthritis Life Website.
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Sonia talks about how daily gratitude, yoga, medications, and the support of groups like Rheum to THRIVE have helped her pursue joy amidst the challenges of rheumatoid arthritis (RA), Graves’ disease and other chronic conditions.
Sonia shares how the Rheum to THRIVE support group provided her with the courage to be vulnerable and set boundaries. Cheryl and Sonia reflect on how these groups become sacred spaces where individuals can fully engage with their emotions, be witnessed without judgment, and sometimes find unexpected moments of humor and joy amidst the challenges.
The discussion offers valuable tips and relatable moments for anyone living with RA, with gentle reminders to take things one day at a time. Overall, Cheryl and Sonia encourage you to embrace acceptance and community so you can live a more empowered and fulfilling life with chronic illness.
Themes of the EpisodeSelf-Acceptance and Grace: Sonia emphasizes the importance of self-compassion, practicing grace, and ease with oneself, especially in dealing with the uncertainties and challenges of life with RA.The Power of Social Media and Community Support: Cheryl talks about using social media as a tool for patient education and support, while Sonia highlights the significance of connecting with others, particularly through the Rheum to THRIVE support group, to share experiences and support one another.Yoga, Mindfulness and Embracing the Present: Sonia shares the pivotal role yoga had in transforming her relationship to her body and helping her embrace th represent moment.Coping with Rheumatoid Arthritis (RA) Through Humor: Both Cheryl and Sonia discuss the role of humor in coping with the challenges of RA, acknowledging that while it may not resonate with everyone, it provides them with a sense of normalcy and relief.Daily Tools and Adaptations for Living with RA: The conversation touches on practical tools like ring splints, compression gloves, and supportive pillows that help manage the physical challenges of RA.Sharing Personal Mantras and Wisdom: Both Cheryl and Sonia share how gratitude practices and self-forgiveness help them live more peacefully with rheumatoid arthritis.The Impact of RA on Daily Life and Relationships: The conversation also explores how RA affects daily activities, relationships, and the emotional aspects of living with a chronic illness.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.
For full episode details include a transcript and video:Go to the episode page on the Arthritis Life Website.
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In this episode, Cheryl Crow and Dr. Liana Fraenkel dive into the crucial concept of "Shared Decision Making" (SDM) in rheumatoid arthritis care. SDM is a collaborative approach where patients and doctors work together to develop a treatment plan. It empowers patients to express their preferences and values, while doctors listen actively and consider these when recommending treatments.
The discussion also touches on the role of education in SDM, especially when it comes to understanding the pros and cons of different medications. Cheryl and Dr. Fraenkel address medication hesitancy, highlighting research that shows how patients benefit from hearing not only from their doctors but also from others who have firsthand experience with rheumatic disease medications.
Finally, Dr. Fraenkel and Cheryl emphasize the importance of ongoing research in rheumatology and the need to strengthen the rheumatology workforce, given the current shortage. They explore the efforts of the Rheumatology Research Foundation and discuss ways for patients to get involved in supporting these vital initiatives.
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 transcript:Go to the episode page on the Arthritis Life Website.
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In this episode, Maggie shares valuable insights from life with axial spondyloarthritis, sjogren’s, osteoarthritis, hypermobility, migraine, and POTS. She also shares her treatment journey which she divides into a “discovery phase, treatment phase, and tinkering phase.”
Maggie and Cheryl discuss practical advice for managing multiple chronic illnesses, including the importance of social support and finding joy in daily experiences. They also discuss their best coping skills for times when managing your health feels like “orchestrating a circus.” Ultimately, Maggie and Cheryl discuss the importance of savoring life's moments and adapting to new ways of living, rather than trying solely to return to a pre-illness lifestyle.
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 transcript:Go to the episode page on the Arthritis Life Website.
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Back in January 2021, I shared the eight most important things that loved ones should know, so they can best support people with autoimmune arthritis. This episode includes messages and insights from twenty-eight other patients!
Today, I’m re-releasing this episode with some additional insights I’ve gained after leading patient support and self-management groups over the last 4 years. Did I miss anything? Let me know in the comments!
Episode at a glance:One – We want you to learn what the disease is and isn’t.Two – The fatigue can be just as bad as the pain.Three – It doesn’t just affect the body – it also affects the mind and emotions.Four – It affects EACH person differently.Five – Daily symptoms are often unpredictable.Six – We want credit for how hard we’re fighting, even when we seem “normal.”Seven – Sometimes we need problem solving, other times we need empathy.Eight – Managing the disease itself is a job that takes time and energy.Bonus point: Take care of YOUR needs as the caregiver/friendConcluding thoughtsMedical 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:For a full transcript of this episode and detailed show notes, go to the episode page on the Arthritis Life website.
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Cheryl and Jen share exciting trends in rheumatology research that will help improve quality of life and develop better targeted treatments for rheumatic disease. They also discuss the importance of involving patients at all levels of research, and shared simple ways that listeners can get involved. Additionally, Cheryl and Jen reflected on the importance of social support in their personal journeys living with rheumatoid arthritis, and the importance of support groups in navigating life with chronic 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.
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 transcript:Go to the episode page on the Arthritis Life Website.
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In this episode, Stasha shares her diagnosis journey for rheumatoid arthritis and reflects on what it was like being a parent to small children while learning how to adapt to rheumatoid arthritis.
Stasha also shares how her quest to merge science-based and natural methods led her to starting a blog. Cheryl and Stasha reflect on the role “obstinance” or stubbornness has played, and reflect on the therapeutic benefits of humor.They also discuss how they view assistive devices in a positive light, and discuss how their identities have been affected by chronic illness.
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 transcript:Go to the episode page on the Arthritis Life Website.
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Have you ever read a love story that features someone with chronic illness? In this episode, author Marissa Eller shares how living with RA led her to write her debut young adult (YA) romantic comedy book "Joined at the Joints." She and Cheryl discuss the importance of authentic representation in books and media, particularly for those with invisible disabilities.
Marissa also shares what it’s like to be an author with RA, including strategies to accommodate her needs and how writing can be a therapeutic form of expression. The conversation concludes with a discussion about the best advice for the newly diagnosed.
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 transcript:Go to the episode page on the Arthritis Life website.
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What’s it like to suddenly go bald at age 22? In this episode, Cheryl interviews Colleen Kydd, who speaks candidly about living with autoimmune alopecia. She shares how she went from covering her baldness with wigs to confidently, unapologetically embracing her identity as a “bald girl in a big world!” Colleen shares how she managed her alopecia in the corporate world, dating life, world travels and new role as an entrepreneur.
Throughout the episode, Cheryl and Colleen discuss acceptance, self compassion, and the crucial importance of connecting with others when we’re struggling. Cheryl and Colleen reflect on the transformative power of storytelling, and the importance of pursuing a meaningful life amidst the challenges of chronic illness.
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:Go to the episode page on the Arthritis Life website for full show notes plus a full transcript, video and more!
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In this episode, Katie reflects on the crucial role that parental and patient advocacy played in her her journey to a diagnosis of juvenile idiopathic arthritis (JIA). She also shares her college experience, and discusses the roles that comedy and humor have played in helping her cope. Cheryl and Katie express the importance of accepting the need for assistive devices, setting boundaries, believing in oneself, prioritizing needs, and having a support system to thrive with chronic illness.
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!
Episode at a glance:Kate’s Diagnosis Story at age 15: Katie shares her journey of being an active child and being diagnosed juvenile rheumatoid arthritis (juvenile idiopathic arthritis) at age 15 after experiencing symptoms for an extended period of time that were initially dismissed as “growing pains”.Advocacy: Katie emphasizes the crucial role her mother played in advocating for her during medical appointments, highlighting the importance of having a supportive network. Katie shares advice on self-advocacy, encouraging patients to set firm boundaries and prioritize their needs, even if it means challenging expectations.Support: The conversation emphasizes community and connection, and the benefit of having someone in your corner to help advocate with you.Coping Strategies: Practical tips are shared, including the use of specialized tools and gadgets designed to make daily tasks easier for individuals with arthritis. Katie also shares her experience with medical marijuana.Comedy: Katie shares the importance of comedy in her life, and how it helps her cope with her diagnosis and spread awareness of it.Accommodations: Katie and Cheryl discuss access to accommodations, particularly in educational settings, such as extended test time and speech-to-text tools for students with chronic illnesses.Living Authentically: Katie advocates for a balanced approach of embracing realism while maintaining a positive outlook, acknowledging both the challenges and opportunities for growth that come with chronic illness.Advice to Newly Diagnosed Patients: Carry on, stick up for yourself, and believe in yourself. Write down three things that made you proud each day.For full episode details:Go to the episode page on the Arthritis Life website for full show notes plus a full transcript, video and more!
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Cheryl, Dr. Yu and Dr. Feldman share their patient experiences and exploring problems with current healthcare systems. They then share how these problems led them to form creative patient programs and services. Cheryl shares the origin story for her Rheum to THRIVE program, and Dr. Yu and Dr. Feldman share how they created Rheumission, a virtual first integrative Rheumatology and Lifestyle clinic for people living with autoimmune disease.
Overall, our passion for reimagining autoimmune care shines through as we highlight gaps in current treatment paradigms, and outline visions for a more inclusive, holistic and effective healthcare model that is proactive versus reactive.
The discussion concludes with an exploration of cutting-edge advancements in telemedicine and personalized medicine, and all speakers share their best advice for newly diagnosed patients.
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!
Episode at a Glance:Importance of personalized care: we discuss the importance of personalized treatment plans tailored to individual needs, rather than one size fits all solutions.Revolutionizing autoimmune care: we explore the potential positive impact of integrating biotech, digital health, and virtual-first approaches to enhance research, diagnostics, and treatment, with Rheumission as an example.Multidisciplinary approach: we highlight the importance of team-based care in rheumatology and autoimmune care, where you can see not only a rheumatologist and rheumatology nurse but also get care from a multidisciplinary team (including registered dietitians, mental health therapists, physical and occupational therapists, etc).Taking a holistic approach: we explore the interconnectedness of physical and mental health, addressing lifestyle factors, stress management, and environmental influences.Exploring Mental Health: The conversation highlights the well-documented correlation between autoimmune diseases and mental health issues like anxiety and depression.Why is accessibility important: we discuss the problem of long waiting times for rheumatology appointments and possible solutions.Advocacy for patient involvement: Dr. Bonnie emphasizes the importance of empowering patients to take charge of their health and actively participate in decision-making processes.For full episode details:Go to the episode page on the Arthritis Life website for full show notes plus a full transcript, video and more!
- Visa fler
