Arthritis Life

In this episode, host Cheryl Crow and psychotherapist Timothy Weymann delve deep into the existential, philosophical questions that chronic illness poses. Is there hope without healing? Is it possible to “make peace with loss and change?”  How on earth can you “access a sense of peace in the midst of ambiguity,” particularly when that ambiguity has to do with your own health and wellbeing?  Timothy reflects on gender, sexual orientation, disability, acceptance and more, sharing how he used “minority survival skills” he learned as a gay man to help him navigate his newfound identity as a person with rheumatoid arthritis. He and Cheryl also discuss how gratitude, forgiveness, self-acceptance, compassion, and social connection help them and others face health difficulties with meaning and purpose.Episode at a glance:Diagnosis story: Timothy advocated for himself as his symptoms worsened despite experiencing medical gaslighting. Eventually he was tested for and diagnosed with Mixed Connective Tissue Disorder and Rheumatoid Arthritis - which came with feeling crushed and wondering: “Is this going to be my new life?”. Impact of gender and chronic illness: Men are a minority in the rheumatoid arthritis community, and Timothy shared how his gender has affected his experiences of healthcare and belonging in the chronic illness community. He reflects on how our culture has often given the message that men should tough things out and not ask for help, which can be challenging for mental health.Sexual identity: Timothy shares lessons he learned while navigating being a minority as a gay man. Gaining protective skills through this experience helped prepare him for the considerations of sharing disability-related information.Mental health: Early on in Timothy’s diagnosis he felt like he was in a “crisis phase”, which led to self-blame, shame, and an urge to keep it hidden. Cheryl shares that many people aim to ‘conquer” the diagnosis in an effort to feel like they can control it, but in time inevitably reach limits. Tim reflects on the wisdom of turning away from control and learning ways to “access a sense of peace in the midst of ambiguity”.Coping Toolbox: Timothy explores existential psychology, which is rooted in existential philosophy and is a non-religious examination of the human condition. The 4 ultimate concerns of this are captivity versus freedom, meaning versus meaninglessness (we get to define what is meaningful to us as individuals), connection versus isolation (we’re independent but also need support), and life versus death / ambiguous loss (experiencing limitations and losses). These 4 ultimate concerns can ground one in building a fulfilling life despite chronic illness.Best advice for newly diagnosed: Know that it’s ok to not be ok, and it’s ok to let everything unfold. Build a good team, be patient with yourself and others, get connected through support, and utilize collective wisdom.What it means to Timothy to thrive with rheumatic disease: Reframing life purpose to mean that a rich life includes both difficulties and happy moments.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 and a transcript:Go to the episode page on the Arthritis Life Website. 

Kelly shares the long and winding road trialing medications and building her coping toolbox as she navigates an undetermined form of autoimmune arthritis. She shares what it’s like to work as a Speech-Language Pathologist while balancing her health needs, and reflects on the pros and cons of disclosing health information to coworkers. With advocacy and education in mind, Kelly has also co-founded The International Foundation for Autoimmune and Autoinflammatory Arthritis and is the author of the blog As My Joints Turn: My Autoimmune Soap Opera. Cheryl and Kelly talk about the benefits of spending time with pets, along with the importance of prioritizing mental health, practicing mindfulness, and getting connected with a supportive community.Episode at a glance:Diagnosis story: Kelly has learned to cope with a changing diagnosis under the umbrella of “autoimmune arthritis,” along with Grave’s Disease. She has tried a variety of treatments to manage symptoms and help determine the underlying diagnosis.Balancing Work and Chronic Illness: Kelly works as a Speech-Language Pathologist, and is also the co-founder of The International Foundation for Autoimmune and Autoinflammatory Arthritis and author of the blog As My Joints Turn: My Autoimmune Soap Opera. In the workplace, she navigates disclosing her health to her coworkers and being aware of accommodation options.A look inside Kelly’s Arthritis Toolbox: Practicing mindfulness, spending time with pets, getting support, and taking care of mental health.Advice for Newly Diagnosed Patients: You’ll be invited to a lot of arguments but don’t have to engage.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 show page on the Arthritis Life website! www.MyArthritisLife.Net

Content / trigger warning: mass shooting discussion Learning to thrive with chronic illness is a marathon, not a sprint. Cheryl and Gittel discuss coping through unlearning toxic positivity, confronting internalized ableism, getting social support and adapting though accommodations.  Gittel shares what’s in her coping toolbox for life with ankylosing spondylitis, from exploring the benefits of medicinal cannabis to getting support in Rheum to THRIVE.  Becoming a “life hacker”, learning acceptance, going with the flow, and letting go of control can help you find joy despite pain, one moment at a time!Episode at a glance:Journey to diagnosis: After 15 years of chronic pain, Gittel was diagnosed with Ankylosing Spondylitis and Crohn's disease. With diagnosis came a combination of emotions: validation that something was wrong, sad that it wasn’t something acute and fixable, and empowered with information that she could research. She learned to adapt and ask for accommodations without shame.Gittel’s coping toolbox: Understanding and unlearning toxic positivity, confronting ableism (including internalized ableism), and building health literacy.Medical Cannabis: Gittel has experienced pain relief, appetite stimulation, and mental health benefits from medical cannabis, which can be injested, topical, or smoked. Her favorite medicinal brand is Level.Getting support: After trying individual therapy, Gittel found Rheum to THRIVE and felt seen and heard with multiple people who “get it”.Finding joy despite pain: One moment at a time, my now is not my forever.Best advice for newly diagnosed patients: Be patient with yourself! This is a marathon, not a sprint. To me, thriving with rheumatic disease means becoming a life hacker, learning acceptance, going with the flow and letting go of controlMedical 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 detailsTo see full details including a transcript and video, go to the episode page on the Arthritis Life Website here.

Summary:Psychologist Dr. Afton Hassett and Cheryl Crow, OT explore the neuroscience behind chronic pain and how its interconnection with fatigue, sleep, stress, and emotions may affect your experience of pain over time. Dr. Hassett is an Associate Professor and Director of Pain and Opioid Research in the Department of Anesthesiology at the University of Michigan. In this episode, she explains how pain is not "all in your head," however it is in your BRAIN! Because the areas of your brain that process pain overlap with the areas that process thoughts and emotions, there is much you can do to influence pain signals. Further, there is evidence that building your resilience through mindfulness, social support, optimism, and healthy lifestyle habits can positively alter how the brain perceives pain.Dr. Hassett also shares lessons from her soon-to-be-released book, The Chronic Pain Reset, and Cheryl shares how she developed her Rheum to THRIVE course and program to help address the full picture of chronic pain patients’ needs.Episode at a glance:Professional background: Dr. Hassett studied clinical psychology in San Diego, where she received her doctorate. She now works as an Associate Professor and principal investigator at University of Michigan in the renowned Chronic Pain and Fatigue Research Center, one of the largest Chronic Pain Research centers in the world.Pain Science 101: Pain is not “all in your head”... but the brain processes pain using many of the same areas and structures of your brain that process emotions and thoughts. Thus, our thoughts, emotions, and life context can greatly affect how pain is processed and experienced. Tools for Fatigue: Pain, poor sleep, poor mood, and lack of energy often group together and affect each other - if you can improve one it can help improve the others. Saving “spoons” for relationships and supportive connections and spending time outside getting fresh air and sunshine can also help improve symptoms of fatigue. Tips for building resilience and optimism: Cope with uncertainty by practicing mindfulness, make time to do the things you love and value even with some lingering pain, and keep a gratitude journal or other practices to help you stay centered and increase positive emotions.Advice to newly-diagnosed patients: Seek a mentor who can help you navigate, find ways to do activities that feel purposeful to you, and know that you’ve got this!Chronic Pain Reset book: Set to release September 5, 2023, Dr. Hassett wrote this book for people with chronic pain and their care providers. She begins by explaining the neuroscience of chronic pain the connection between pain and stress, social relationships, positive and negative emotions, gratitude, joy, and physical health. The second part of the book leads you through a 30-day journey to try evidence-based activities and practices to find the ones you like best. The last part of the book helps you customize a program filled with activities that make sense to you and address multiple domains of wellness.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:Dr. Afton Hassett is a licensed clinical psychologist who is an Associate Professor and Director of Pain and Opioid Research in the Department of Anesthesiology at the University of Michigan. She studies behavioral interventions for people with chronic pain including those that promote resilience. She has published over 100 articles in scientific journals and has over $10M in NIH research funding. She is also a Past President of the Association for Rheumatology Professionals, a division of the ACR. 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.Episode links:Links to things mentioned in episode or additional listeningChronic Pain and Fatigue Research Center at U MichiganAfton’s research - link to all research publicationsDr Marty Seligman Positive Psychology - UPennAfton’s research w/Dr. Martin Seligman (optimism) on soldiers - Chronic Pain Reset book,  will be released September 2023Afton’s social mediaTwitter - @aftonhasset Cheryl’s Arthritis Life Pages:Arthritis Life websiteYoutube channelInstagram @arthritis_life_cherylTikTok @arthritislifeArthritis Life Facebook PageCheryl on Twitter: @realccArthritis Life Podcast Facebook GroupFor Full Episode Show Notes + TranscriptGo to the Arthritis Life website at www.arthritis.theenthusiasticlife.com

Cheryl C. and Cheryl K. share key tools for thriving with arthritis, like finding ways to ask for help, developing health literacy, practicing self-compassion, and getting support. They also discuss the safety of modern medicine and how to balance it with complementary therapies to create an individualized plan for managing rheumatoid arthritis.  Additionally, they delve into the mental health techniques that have helped them cope, including: reframing exercises, and working past bias. Cheryl K. shared how she used her experiences to form Arthritis Consumer Experts, a patient-led and science-based organization with the goal of providing better education to people with arthritis.Episode at a glance:Navigating chronic illness when the internet was just starting: Cheryl Koehn had an athletic background, but when symptoms struck she went to the library to do her own research and advocated for herself despite medical gaslighting.Trialing treatment options: Cheryl K. initially denied Western Medicine before she ended up with 36 active swollen joints within a year and progressively worsening quality of life. Following this, she received gold injections and other conventional DMARDs initially, adding in Methotrexate and later transitioning to newer medications like biologics as they became available.Coping with peer pressure: People trying to convince her that “natural is better” and to avoid medications, however natural isn’t inherently better at controlling disease and newer medications are backed by research. Cheryl C. and Cheryl K. discuss how a balance of complementary therapies and medication help people safely manage their conditions. Koen practices reframing exercises, works on explicit and implicit bias, and considers “what can I learn from this person today” with an open mind.Wisdom for newly diagnosed patients: Find ways to ask for help! Develop health literacy as a tool for advocating for yourself and to guide decision making.What does it mean to thrive with rheumatic disease: Practice self-love and self-compassion, love what you do, and give yourself room to breathe.Arthritis Consumer Experts (ACE): Cheryl K. used her experiences of running her own consulting firm, volunteering, and being on the board at the Arthritis Society to form this organization. Her goal is to provide better education to people with arthritis, and to not be the only person with arthritis with a say in arthritis organizations.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:Go to the Arthritis Life website

Dr. Kara Wada, an expert in Sjogren’s Disease and its ties to Rheumatoid Arthritis, shares her insights on managing chronic illness. She discusses the emotional impacts of autoimmune conditions and emphasizes the importance of mental health. Listeners learn about practical tips from her disease management toolkit, including hydration and stress management strategies. Dr. Wada encourages a balanced lifestyle and the creation of supportive communities, helping those affected focus on living vibrantly rather than merely symptom elimination.

Hoang Tran, a certified hand therapist and occupational therapist specializing in hand therapy, shares valuable insights about caring for hands affected by inflammatory arthritis. They discuss the complexities of hand anatomy and the critical role of hand therapy in enhancing daily functions. Hoang stresses the importance of patient advocacy and seeking specialized care, especially for those newly diagnosed. Additionally, they explore the connection between hand therapy and mental health, emphasizing a holistic approach to managing arthritis.

Clare and Cheryl share tips for how to cope with periods of no diagnosis or changing diagnosis. Clare also provides insights from her unique perspective as someone diagnosed with autism as an adult, soon after her myofascial pain syndrome diagnosis.Cheryl and Clare discuss the importance of perseverance in seeking help, building a personalized treatment plan, and ways to find joy in the midst of chronic illness while accepting that it’s okay to feel sad or angry too.  The episode concludes with a discussion about how pain, brain fog, anxiety, and burnout are hard, but support is out there and can make a big difference in living well despite the challenges.Episode at a glance:Journey to diagnosis of myofascial pain syndrome and autism: getting referred to a variety of specialists to troubleshoot symptoms that mimic other conditions, learning to unmask and cope with pain, brain fog, anxiety, and burnoutBuilding a personalized treatment toolbox: currently incorporating pharmaceutical medication with integrative treatment. Physical therapy and exercise with gentle movement, yoga, and weight training, Cymbalta for depression and chronic painFinding joy: Find a community where you can learn new things and have compassionate and caring support. Don’t forget to find joy in the “little things”, like cozy blankets or a TV show / movie / book to escape to.Advice for undiagnosed patients: You’re not crazy! The gray area is scary, but it won’t last forever. Keep an open mind, and know it’s okay to feel sad and angry. Coping with a change in diagnosis: Clare’s tips from her experience having her diagnosis changed: being open to new possibilities, advocating for yourself, and being realistic about what doctors knowLiving well despite chronic illness: Getting to a place where you’re friends with your body - not fighting against it but rather acknowledging what your body has 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 & support group program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Learn more here!For full episode Details, Links, Video & TranscriptionGo to the Arthritis Life Website: www.MyArthritisLife.Net (episode page coming soon!)

In this episode, Marisa shares what it was like to be diagnosed with rheumatoid arthritis around her thirtieth birthday after thinking her wrist pain was only carpel tunnel syndrome. She opens up about her mixed emotions after her diagnosis and shares what helps her cope and thrive, including burlesque dancing, group fitness, the Rheum to THRIVE support group program and more. The episode concludes with a discussion about how Cheryl and Marisa learned to be kind to themselves.Episode at a glance:Diagnosis journey - thought it was carpel tunnel in both hands, turned out to be RA, diagnosed around her 30th birthday.Emotional response to diagnosis: mixed feelings, bittersweet - partly relieved to have answers, but frustrated about not being able to do what she used to. Went down google “rabbit holes” and got overwhelmedWhat helped her adjust and thrive: joining Rheum to THRIVE for more credible information and support from others going through similar thingsThe role of fitness: Marisa explains how her work as a group fitness instructor and her fitness habits help her manage her RA symptoms, mood and stress.The role of burlesque dancing: Marisa joins a local burlesque dancing group and connects with her body in new waysLearning to be kinder to herself: Marisa shares how through therapy and Rheum to THRIVE she learned to be less judgmental of herself and more compassionate.Tips for Work with RA - Marisa shares what helps her work full timeMedical 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 empowerment program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Learn more here!For full episode details, links & transcript:Go to the episode page (coming soon) at the Arthritis Life website: www.MyArthritisLife.Net

Trigger warning: This episode includes a discussion of near-death experiences, medical trauma and decisions about quality of life versus prolonging of life.  If you are having a mental health crisis or are struggling with suicidal thoughts, in the US you may call “988” for the Suicide and Crisis Lifeline which is staffed 24 hours a day.In this episode, Hay shares her tumultuous experiences with autoimmune vasculitis. She and Cheryl urge fellow chronic illness warriors to resist trying to fit their experience into a tidy narrative and instead ride the waves of uncertainty.  While extremely challenging, Hay notes that “deep calls unto deep”, allowing shared humanity and connections based on what unites us all.For Full Episode Details Including Transcript:Go to the episode page on the Arthritis Life Website at: https://arthritis.theenthusiasticlife.com/2023/01/17/how-i-survived-survival-mode-marriage-faith-near-death-experiences-with-autoimmune-vasculitis-warrior-hay/Episode at a Glance:Education and work: Hay earned her PharmD (Pharmacy Doctorate) in 2011, but began experiencing chronic illnesses shortly after. She has learned to understand that your value is not based on your productivity.Relationships: Symptoms like fall risk, limitations on leaving the house, and being in “survival mode” have been trying on her marriage, but her husband never gave up.Diagnosis saga: living with Behcet’s vasculitis, common variable immune deficiency, Microscopic colitis, and respiratory failure, along with a variety of complicationsTreatment journey: Hay explains how she uses total parenteral nutrition (TPN, aka “vein food”) due to her GI tract not absorbing and has had a lot of trial and error with medications over the years, some even working against each other. She eventually found a promising mix of medications that has recently been helping her improve. She has been working with a team of seven specialists who collaborate on her treatment, especially from a palliative care perspective.Coping and advice: Hay shares the importance of art, faith, clear communication, and having boundaries. She explores how she tries to live life to the fullest within constraints. After having to deal with end of life conservations, she notes that “The way you hold people’s stories has to be infinitely more gentle than you thought”. Having been a writer and interning for a literary agent, she is used to stories being explained in 45-65 minutes but life with chronic illness feels like “you’re on a blindfolded roller coaster you’ve never seen before”. Cheryl and Hay discuss the benefits of resisting the urge to force your experience into a tidy narrative.Surviving SURVIVAL MODE: Hay shares how some days have been just living breath to breath and opens up how she’s allowed herself to grieve and learned to “riding the waves of uncertainty.” She shares what it’s like to have conversations about quality of life vs prolonging life. She explains the importance of connecting to others and exploring our shared humanity, “because deep calls unto deep” - what is happening, why am i here, what connects us, and understanding you’re not alone. She also shares how religion and faith have served an important purpose in her life.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, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in March 2023!