Arthritis Life

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!

• 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 control

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!

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

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

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.

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.

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! 

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 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.

• Links to things mentioned in episode or additional listening
  • Chronic Pain and Fatigue Research Center at U Michigan
  • Afton’s research - link to all research publications
  • Dr Marty Seligman Positive Psychology - UPenn
  • Afton’s research w/Dr. Martin Seligman (optimism) on soldiers - 
  • Chronic Pain Reset book,  will be released September 2023
• Afton’s social media
  • Twitter - @aftonhasset 
• Cheryl’s Arthritis Life Pages:
• Arthritis Life website
• Youtube channel
• Instagram @arthritis_life_cheryl
• TikTok @arthritislife
• Arthritis Life Facebook Page
• Cheryl on Twitter: @realcc
• Arthritis Life Podcast Facebook Group

Go to the Arthritis Life website at www.arthritis.theenthusiasticlife.com

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

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.

• 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.

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 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.

Dr. Wada and Cheryl delve into the connection between Sjogren’s and Rheumatoid Arthritis, discover what’s in Dr. Wada’s disease management toolkit, and share insights into living a full, vibrant life with chronic illness.

Dr. Wada and Cheryl also share insights into how mental health can be affected by chronic illness, and reflect on how the “overachiever” lifestyle is not always helpful. They encourage listeners to focus on making decisions that align with their values and target living well with chronic conditions rather than focusing on total symptom elimination. They encourage listeners to find ways to live a balanced lifestyle and develop a support system which can help you thrive throughout the highs and lows of chronic illness life.

• Understanding Sjogren’s Syndrome: The immune system attacks moisture producing glands and parts of the nervous system, leading to a variety of symptoms including dry eyes and mouth, difficulty swallowing, fatigue, body aches, irritable bowel, and small fiber neuropathy. Rheumatologists are typically the specialists seen for Sjogren’s, but patients may also get support from neurologists, ophthalmologists, and other specialists.
• Perspective as an Allergist-Immunologist: Advocacy, bringing awareness, and education  
• A look Inside Dr. Wada's Toolkit: Finding the right medications, carrying a water bottle, using eye drops, utilizing stress management skills, and being mindful of lifestyle factors like sleep hygiene, movement, and nourishing your body with proper nutrition.
• Chronic illness and mental health: Initially felt like being an “overachiever” by working out often and taking supplements would ease symptoms, but that’s not necessarily helpful. 
• Words of caution re: supplements & “natural” methods: Dr. Wada and Cheryl discuss the reasons to be cautious about supplements as there isn’t much regulation or transparency with them currently.
• Advice for living well despite chronic illness: Take a deep breath, there will be good days and bad days no matter what. Focus on making decisions in alignment with your values.
• Want more Sjogren’s support? Check out the Sjogren’s Summit - April 1st-2nd!: 

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 show page on the Arthritis Life website at www.MyArthritisLife.Net.

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

In this episode, occupational therapists Cheryl Crow & Hoang Tran go in depth on how and why the human hand is so complex, and how people with inflammatory arthritis can take good care of their hands to relieve hand pain and improve function.

This episode includes an in depth exploration of what it’s like to see a hand therapist, why hand therapy helps people with arthritis, what people with rheumatic diseases need to know about hand anatomy, and how to advocate for yourself to get an interdisciplinary team supporting you (in addition to your rheumatologist).  They also take a deep dive into how rheumatoid arthritis can transition to a more orthopedic issue long term, and Cheryl & Hoang share their best advice & tips for newly diagnosed patients.

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 & 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!

Go to the show page on the Arthritis Life website, thanks! 

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

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.

• 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 burnout
• Building 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 pain
• Finding 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 know
• Living 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. 

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 & 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!

Go to the Arthritis Life Website: www.MyArthritisLife.Net (episode page coming soon!)

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

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.

• 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 overwhelmed
• What helped her adjust and thrive: joining Rheum to THRIVE for more credible information and support from others going through similar things
• The 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 ways
• Learning 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 time

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 empowerment program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Learn more here!

Go to the episode page (coming soon) at the Arthritis Life website: www.MyArthritisLife.Net

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

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.

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/

• 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 complications
• Treatment 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.

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, 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!

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

Yoga therapist and researcher Dr. Steffany Moonaz and host Cheryl Crow discuss the many benefits of yoga for people with inflammatory arthritis. They also bust common myths and misconceptions about yoga, including that it’s just an exercise or series of physical poses. 

Dr. Moonaz shares her best tips for patients newly diagnosed with arthritis and explains how the philosophy of yoga can help people with arthritis fully embrace the present moment and improve overall wellbeing. Dr. Moonaz is the founder of Yoga for Arthritis, which aims to bring evidence-informed and heart-centered yoga practices to people living with arthritis and chronic pain worldwide. 

• Yoga meaning and philosophy: The union of mind and body through movement, breath, and mindfulness - not just poses and exercise!
• What makes Yoga Therapists different than Yoga Teachers: Yoga therapists have further training in understanding of health conditions to help patients manage chronic illness or imbalances through yoga.
• The power of movement for mental health: After experiencing improvements in her own mental health through dance and exercise, Dr. Moonaz realized her purpose of reducing suffering for people through mindful movement. She focuses on arthritis due in part to it being a leading cause of disability.
• Research on Yoga for Arthritis: It is considered integrative medicine with improvements for overall quality of life. This is due to relief of pain and stiffness, increase in physical function through balance, strength, and flexibility, and mindfulness for stress reduction
• Beginner Tips: Ask your rheumatologist if there are positions you should avoid, search for a Yoga Therapist who has experience with accessible / adaptive yoga through the International Association of Yoga Therapists, private lessons can be beneficial for added safety and personalized / targeted symptom management
• Advice for newly diagnosed patients: find “RA Thrivers” and listen to their stories, use social media as a resource for building connections, and join Rheum to THRIVE for education and support!

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, 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 2023!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Full show notes including transcript and video

Go to www.MyArthritisLife.Net to the show page, which should be up soon! 

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

After being a fierce athlete and playing Division 1 water polo, Emily was diagnosed with rheumatoid arthritis at age 22.  She shares lessons learned while working as a night shift nurse for 12 years and having three children.  

Emily & Cheryl discuss ways to cope with the ups and downs of chronic illness, especially during times of uncertainty or when it seems the disease is posing “moving targets.”  Emily shares what helps her thrive despite obstacles, including: having a supportive community, learning tips & tricks, and using products for accessibility. 

• Emily’s diagnosis story: second opinions, new/fluctuating symptoms, uncertainty
• Emily’s treatment journey: methotrexate, steroids, medical cannabis
• Pregnancy and postpartum journey with RA: how RA has impacted functional/lifestyle tasks with parenting
• Work life: Emily shares what it was like working as an ER nurse while managing RA
• Coping with “hard seasons”/flares: having community, validation, knowing “it’s not in my head,” connecting with other patients in the Rheum to THRIVE group; learning tips / tricks / products; accessibility
• What Emily wishes she knew when first diagnosed: autoimmune journey is not linear/is like a moving target; wondering “is this a temporary flare up, or is this long-term”; setting treatment goals - “I want to not be distractingly aware of my RA/health”
• Coping: through a supportive community who “gets it”, learning tips and tricks for creating a rheumatoid arthritis “toolbox”, and addressing the mental health impact that isn’t often talked about

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.