Arthritis Life

For full episode show notes go to the episode page here.

• Diagnosis story: Julia went from having a very active lifestyle, to becoming waking up with pain, fatigue, fever, and other symptoms. After initially thinking her symptoms were from a virus or pushing herself too hard in dance, she received a diagnosis of rheumatoid arthritis.
• Creative Pursuits: Julia expresses joy in dancing, theater, and writing - She shares coping strategies such as planning ahead, giving herself permission to rest and take breaks, social support, and finding positivity through her passions. In addition to her published writing, she is currently working on a novel.
• Resilience and Adaptability: The conversation delves into Julia's experiences as an actress, emphasizing the resilience and the ability to adapt to challenges in artistic pursuits.
• Self-Awareness: Julia encourages listeners to take some time to know themselves and advocate for their feelings. She shares “don’t be afraid to say no”, and honor what you’re feeling each day.
• Living in the Moment: Thriving with rheumatic disease includes being mindful of the present moment, honoring oneself, and finding joy despite the challenges.
• Advice to newly diagnosed patients: Be patient with yourself. Understand how your condition works in your body, and be kind to yourself.

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.

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!

Go to the episode page here.

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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.”  

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.

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! 

Go to the episode page on the Arthritis Life Website! 

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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 Sponsor
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!

*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/

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After discovering that episode 14 is the most downloaded of all my Arthritis Life Podcast episodes, I decided to release it with some additional insights from my perspective now. I also provide some updates after facilitating support groups for over 250 people in the last three years.

This episode includes a deep dive into how rheumatoid arthritis affects more than just joints – it affects people’s whole bodies, and whole lives.  I reflect on the five things I wish I had known when I was first diagnosed, way back in 2003. I hope that these reflections help you feel less alone and more grounded as you try to manage the best life possible with inflammatory arthritis!

• #1 – Rheumatoid Arthritis affects more than just joints.
• #2 – RA affects your social life in difficult ways (such as misconceptions) and positive ways (such as connections with a chronic illness community)
• Tips for using websites and social in productive ways
• #3 – Gray areas are the norm for autoimmune disease
• #4 – Living with chronic illness will affect your mental health.
• Cheryl’s experience with allowing herself to grieve her health
• Medical gaslighting.
• #5 –  Managing RA is a job but you can learn how to do it!

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.

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! 

Go 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.

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.

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.

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! 

Go 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.

Cheryl and Dr. Amigues touch upon the significance of accurately diagnosing RA and the potential for misdiagnosis, especially as this influences the ability to receive appropriate care. They give valuable insight into the journey of living with RA, and bring a positive perspective that thriving can be possible through effective medical interventions and lifestyle modifications. 

For full episode details including a transcript and video, go to the episode page on the Arthritis Life Website. 

• Being a rheumatologist: Dr. Amigues finds joy in her medical practice, especially in encouraging patients to live life to the fullest despite challenges. She emphasizes understanding the patient's perspective and asking thorough questions.
• Importance of Accurate Diagnosis: The complexity of rheumatological conditions is acknowledged, with Dr. Amigues mentioning the importance of differentiating between various disorders for accurate diagnosis, while considering factors like comorbidities to create effective treatment plans.
• Individualized Patient Care: Dr. Amigues emphasizes the importance for patients to find a rheumatologist they trust, fostering personalized, comprehensive care. Advocating for accurate information and addressing medication concerns are also important while navigating healthcare for rheumatic conditions.
• Rheumatoid Arthritis (RA) Remission: Dr. Amigues shares the possibility of medicated remission in rheumatoid arthritis, highlighting advancements in treatment options and balancing these with lifestyle adjustments.
• Management through lifestyle adaptations: The integration of lifestyle changes alongside medical treatments for managing RA is discussed, with a focus on using exercise and movement as beneficial strategies.
• Mental Health and Self-Worth: The conversation explores psychological aspects of living with chronic diseases, addressing the concept of accepting and coping while acknowledging that life may present ongoing challenges that impact adaptability.
• Language Matters: Being mindful of the language used with chronic illness makes a difference. For example, patients don't fail medications, rather, certain medications may not achieve the desired result. Terms like "difficult to treat" should not be applied to the patient but rather to the disease itself. The importance of using sensitive language when discussing rheumatoid arthritis and similar conditions is also expressed.

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.

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!

For full episode details including a transcript, go 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.

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. 

• 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.

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.

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! 

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 Crow

Cheryl 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.

Coming soon on the Arthritis Life Website. 

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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.

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.

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! 

Go 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.

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. 

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.

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! 

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.

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.

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.

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! 

Go 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.