Arthritis Life

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.  Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

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!  Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

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. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

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. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

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.  Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Summary:Nikita shares her personal journey of acceptance, self-compassion, and finding her center while navigating multiple conditions, including endometriosis, fibromyalgia, and Hashimoto’s. Their conversation delves into the power of mindset in managing chronic pain, the significance of self-love, and the need to let go of self-blame. Cheryl and Nikita highlight the importance of community, finding joy in everyday moments, and the role of pets in providing companionship and comfort. Nikita's journey is characterized by embracing her authentic self and recognizing that, while challenges persist, she has the tools to thrive despite them. Her favorite mantra, "Do what you can when you can," encapsulates the empowerment of choices and resources. Nikita invites listeners to connect with her on Thrive With Nikita and explore her podcast, Crafted to Thrive, which focuses on the experiences of entrepreneurs with chronic illnesses. For a supportive community and to hone skills for living well despite chronic illness, Cheryl also welcomes listeners to her Rheum to THRIVE program.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! Show Page - for Full Transcript, Show Notes & VideoGo to the episode page on the Arthritis Life Website for full details and hyperlinks. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Episode at a glance:Navigating Diagnosis and Treatment: Stella shares her journey of being diagnosed with axial spondyloarthritis at a young age and the challenges of finding effective treatments. Cheryl emphasizes the importance of advocating for oneself and seeking alternatives if a treatment is not the right fit.Using Mobility Aids and Devices: Stella and Cheryl discuss the use of mobility aids to help manage the impact that symptoms have on daily life. Stella highlights how using a cane helped her receive better care and awareness, while Cheryl mentions the benefit of finding tools that reduce the impact on joints and make tasks easier.Reclaiming Identity and Self-Expression: Personalizing mobility aids and turning them into accessories can help them feel more comfortable and reduce the stigma associated with them.Internalized Ableism: Their conversation brings up the topic of internalized ableism and emphasizes the importance of challenging these perceptions.Self-Advocacy and Communication: Stella and Cheryl discuss the necessity for advocacy when interacting with healthcare professionals. They encourage being thorough about symptoms, side effects, and concerns. Additionally, they recommend taking notes, bringing a friend or support person, and having a list of questions ready during appointments.Knowing Your Rights and Accommodations: Stella talks about obtaining a letter from her doctor to protect her rights in the workplace. Knowing legal protections for people with disabilities can be essential in navigating work environments and seeking proper accommodations.Finding joy despite limitations: Despite the challenges of chronic illness, Stella and Cheryl emphasize the importance of seeking joy, pursuing passions, and participating in activities that bring happiness, including using adaptations and coping strategies when needed.Community and Support: Stella and Cheryl discuss the value of being involved in a supportive community, such as Rheum to THRIVE where individuals with chronic illnesses can share experiences, insights, and mutual understanding.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:See the episode page on the Arthritis Life website. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Episode at a glance:Relation to autoimmune arthritis: Dr. Furlan is a physician at a pain clinic, a scientist at the rehab institute, and assistant faculty at the University of Toronto. She is a physiatrist who specializes in pain.Understanding Pain: Dr. Furlan explains how pain science is continually advancing and more information about how the brain processes pain is being discovered. There are different types of pain, and multiple systems in the body involved with the sensation/perception of pain.Your pain is valid: Some people might not see your pain, and you may be stigmatized, but what you say is pain, IS pain. If other people say you’re not in pain, it’s because they don’t understand the pain system.Language around pain: The words we use about pain can make a difference too. Cheryl and Dr. Furlan discusses different ways of approaching words like “conquer” or “defeat” in the context of living with a painful autoimmune condition.8 steps for living better with pain: Dr Furlan explains strategies for exercise, sleep and more. For example, she recommends breaking up exercise into smaller “snacks” or movement breaks. She also shares the importance of quality sleep is important too, since it gives you energy for other lifestyle factors. Investigate if you have a treatable sleep condition (like sleep apnea), and then address your sleep hygiene/routines - including making sure you’re not sleeping too little or too much. Lifestyle factors are often interconnected, and taking care of your mental health and nutrition can also support sleep and exercise.Dr. Furlan’s best advice for newly diagnosed: Doing it alone is HARD. Find support, someone knowledgeable who’s climbed their mountain or helped others do it, who’ve traveled this road before - they can be your guide.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 group 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! Full Episode Details plus Audio Transcription: Please go to the episode page on the Arthritis Life website for all the details!  Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Episode Summary:🛑Trigger warning: discussion of eating disorders (I did not have one but was accused of lying about causing my weight loss and hiding an ED) 🛑In this episode, my parents and I share our memories of my diagnosis story, which covers roughly 2001-2004.This includes a discussion about the profound confusion we all experienced when I went from a healthy, robust student athlete to having a  “mystery illness” that doctors keep insinuating is “just anxiety” (or an eating disorder).  We also share how we lost faith and trust in some doctors after experiencing medical gaslighting, yet we also found hope in the competency and empathetic care of other doctors (particularly in rheumatology).  We share our mixed reactions to the diagnosis of rheumatoid arthritis, and my parents open up about what it’s like to have a child get sick who’s a young adult - not a kid anymore but not a fully independent adult either.My parents also share their advice to other parents of children or young adults who are sick but not yet diagnosed, as well as their best advice for newly diagnosed people with rheumatic diseases. This is a must listen!Episode at a glance:Introduction to my parents and discussion about my early life (healthy, active lifestyle, no drugs or risky behaviors).Cheryl’s Early diagnosis story (2001-3): Going down the gastroenterology path. We initially addressed systemic symptoms (stomach issues, eye issues and fatigue). The gastroenterologist did many procedures (including an endoscopy, barium swallow and pH manometry) then said nothing was wrong other than “the relationship between mom and daughter” (insinuating we were too close or perhaps both “too anxious”). He then did a gastric emptying scan and diagnosed me with gastroparesis (slow motility - a form of dysautonomia) but still said nothing else was wrong.Medical Gaslighting: My parents dilemma of whether to believe me or the gastroenterologist and others who accused me of having “nothing wrong” and just being a hypochondriac: how they chose to believe me despite the medical gaslighting from docs; how it was confusing that i could just get sick out of seemingly nowhere, it just didn’t make sense. My dad knew I didn’t have an eating disorder.2003: Hiring a concierge doctor who initially thought it was just anxiety, but eventually in summer 2003 once my joints were hurting more she ran more bloodwork and preliminarily diagnosed me with RA.Immediately after diagnosis - memories of the first trip to the rheumatologist and starting meds: relief, confusion, a whiplash from feeling not believed to feeling believed and that this is very serious; discussions about whether to start medications or not; my mom opened up about realizing she could advocate for me but wasn’t the expert in the medications;Cheryl returns to New York for final year of undergrad and experiences medicated remission for 6 years - end of “phase 1” of her RA journey, which became more bumpy and complex after that first remission ended.My parents advice to others: My parents share their best advice to other parents who may be in the position of advocating for their childrenMedical 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!Full episode details including video and transcriptGo to the Arthritis Life Website for full episode details. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

You are not alone. In this episode, host Cheryl Crow and Rheum to THRIVE Graduate Katie Searfross discuss how to find a realistic sense of hope when coping with multiple fluctuating, complex chronic illnesses that are sometimes out of our control. Katie shares how she copes and finds ways to hold on to moments of joy even when her symptoms of Reflex Sympathetic Dystrophy (RSD or complex regional pain syndrome), Migraine and Rheumatoid Arthritis remain. Katie and Cheryl share how they’ve learned to be gentle with themselves and patient in those tough moments when you do “everything right” and your symptoms remain.  They also discuss the complexity of moments where you have to decide whether to push past your pain and when to slow down and listen to your body. Katie and Cheryl also discuss the value of group support and a sense of community, which Katie found in Rheum to THRIVE.  Katie also shares lessons she learned as a children’s pastor specializing in grief, which can apply to people with chronic illness as well.Episode at a glance:Diagnosis story: Prior to her rheumatoid arthritis (RA) diagnosis, Katie knew she had other diagnoses including Reflex Sympathetic Dystrophy (RSD or complex regional pain syndrome) and Migraine. As a result, it was difficult for her to recognize “normal” symptoms for RSD compared to out of the ordinary symptoms which pointed to a new diagnosis of rheumatoid arthritis.Pain and dissociating: Katie shares how she found herself dissociating from pain / distracting herself from pain, and needing to learn to reconnect with her body.Katie’s coping toolbox: At first, adjusting to RA diagnosis felt like losing everything. It’s frustrating to have days when you do everything right and still have pain. Katie shares how in Rheum to THRIVE, being provided with evidence-based tools to manage pain and fatigue while having acknowledgement of the reality that sometimes your symptoms will remain despite doing everything right was empowering. It’s a reminder that we can still focus on ways to find joy and thrive. Katie found freedom in knowing her diagnosis is not her fault, and learned to be gentle with herself.Social support: Katie shares how important it was for her to find a sense of authenticity, understanding, valid information and connection and how she found that in Rheum to THRIVE. Having expert guidance and an ability to ask questions helps to make sense of diagnosis, experiences, and lifestyle considerations.Lessons learned from Katie’s work in grief: Katie shares lessons she has learned in her work as children’s pastor with adults and children who are grieving; many of these lessons can also help people with chronic illness, including learning to be gentle with yourself.Katie’s best advice for newly diagnosed: Find a safe community - don’t try to do this as an island, because it’s too much for one person to hold all on their own. All suffering is valid, it’s never helpful to say it could be worse.What it means to Katie to thrive with rheumatic disease: Using the “and” - this is hard and I want to laugh and make memories. It is embracing that and not putting life on hold. I remind myself that I’m doing my best.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 details & Transcript:Go to to the episode page on the Arthritis Life website for full episode details including a transcript and video! Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.