arthritis life

In episode 116 of the Arthritis Life Podcast, Lauren Huffman shares her journey with Ankylosing Spondylitis, and how her passion for occupational therapy and dogs has brought her meaning even through challenges.

She and Cheryl give insight into the “behind the scenes” of Arthritis Life, and what resources are available. They discuss the importance of support in navigating rheumatic disease, and how the comprehensive approach of Rheum to THRIVE fills gaps in the healthcare system. 

Episode at a glance:

• Diagnosis Story: Lauren recounts her journey with ankylosing spondylitis, and how the diagnosis was both a relief and overwhelming. She and Cheryl discuss tools and strategies for managing symptoms, including medication management and communication with healthcare providers.
• Occupational Therapy: Lauren, OT student and Cheryl, OT talk about what occupational therapy is, and how it’s holistic approach relates to management of rheumatic disease
• Arthritis Life: Lauren and Cheryl discuss the “behind the scenes” of Arthritis Life and Rheum to THRIVE,
• Dogs: Lauren reflects on her background in dog training, and how this passion has brought her joy despite challenges. She shares her experience with dog sports and raising service dogs in training, and how this has given her insight into adapting to make life with a furry friend possible and meaningful.
• Mental Health and Identity: Sometimes the unpredictability and dynamic nature of chronic illness can rob your enthusiasm, but it’s possible to thrive through acceptance, adaptations, and management strategies. Lauren shares words of wisdom to show up for yourself on good days and bad days, and to take care of yourself in a way that helps you to be resilient.
• Advice for Newly Diagnosed Patients: Lauren shares her perspective on Rheum to THRIVE, expressing the value of the comprehensive approach, connection to resources, and support from people who “get it”.

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

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 plus a transcript

Go to the show page on the Arthritis Life Website.

Episode at a glance:

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.

Episode Sponsors

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 + Transcript

Go to the episode page here.

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 Sponsors

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 video and transcript

Go to the episode page  on the Arthritis Life website for full details! 

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 Sponsors

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! 

Show Page - for Full Transcript, Show Notes & Video

Go to the episode page on the Arthritis Life Website for full details and hyperlinks.

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 Sponsors

Rheum 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! 

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 children

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

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!

Full episode details including video and transcript

Go to the Arthritis Life Website for full episode details.

Jenni shares how her symptoms were initially dismissed before she got diagnosed with rheumatoid arthritis. She then got her diagnosis and experienced a rare medication side effect: medically induced pustular psoriasis. Through it all, she also balanced being a mom, wife and friend. In this episode Jenni shares how she learned the importance of social-support, self-advocacy, humor and an unashamed embracing of her “new normal.”

Episode at a glance:

• Diagnosis and treatment Saga: After experiencing knee pain, fatigue, and fevers, Jenni is first diagnosed with an “infection in her knee” and then told she needs to “just lose weight; after advocating for herself Jenni gets a second opinion and a preliminary RA diagnosis, then has many complications with treatments including medically induced pustular psoriasis.
• Learning Self-Advocacy: Jenni talks about the importance of finding a doctor who is the right fit for you, listens to your story, and explains their treatment clearly - while avoiding medical gaslighting and weight blame
• The importance of social support: Jenni shares how she lost some friendships, but also found amazing people to keep her going. Jenni started “My Spoonie Sisters” to help others feel less alone.
• Jenni’s Coping Tools: She works to lean hard into the mindset of embracing her reality and not feeling shame about her health.
• Finding a “New Normal:” Be honest with the people in your life - including finding ways to talk about it to your children if you have any. Don’t be afraid to ask for help and be specific! Be open to trying new things and sharing/connecting with others.
• Best Advice for Newly Diagnosed Patients: When things feel out of control - you matter, you’re enough, your life matters; use what you’re going through to help others.
• Favorite Mantra: Don’t forget your spoon - save one for yourself!
• Thriving with Rheumatic Disease: Thriving with rheumatic disease means not giving up! Have hope that you will still live a wonderful life, even if it’s not exactly how you may have once envisioned it.

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

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!

Episode at a glance:

• What is a naturopathic doctor? Naturopathic doctors use a holistic approach to patient care. They often include nutrition, mind-body medicine, exercise, and natural approaches to their treatment. Naturopathic doctors must take professional board exams in order to be licensed to practice.
• Mymee: Mymee aims for personalized care for people with autoimmune rheumatic disease and symptoms resulting from long-COVID, aiming to track variables that may make symptoms better or worse.
• Symptom Tracking 101: With Mymee, tracking pain focuses on quality vs quantity - so it’s not just the average 1-10 pain scale. The importance of context and ability to participate in activities is taken into consideration.
• Coping with unpredictability: Part of being human is dealing with the unknown. Control can also be a double-edged sword: it can be empowering, but also overwhelming if obsessed over and freeing to let go over.
• Tips for exercise & fatigue: Overexertion can be trigger, so pace your movement! Incorporating snacks with your exercise may help with fatigue, and calisthenic exercise can be beneficial for strength training with the bonus of having minimal equipment requirements.
• Words of wisdom: Some things aren’t modifiable / controllable, but be open to possibilities for the things that can be controlled. Practice self-compassion and take care of yourself, first! You don’t have to know it all.

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:

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 + Transcript:

Go to the Arthritis Life Website at: https://arthritis.theenthusiasticlife.com/ 

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 Sponsors

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! 

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 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.

Episode links:

• 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

For Full Episode Show Notes + Transcript

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

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.

Episode at a glance:

• 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!: 

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

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 full transcript:

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

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 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. 

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

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!

For full episode Details, Links, Video & Transcription

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

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 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.

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

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!

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. 

Episode at a glance:

• 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

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

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 including a video and transcript:

Go to the episode page on the Arthritis Life Website.

Episode at a Glance:

• Dianne’s Diagnosis story and subsequent emotional roller coaster
• Dianna’s Treatment Journey: Dianna went from resistant to medicines to trying a biologic and feeling a large improvement in symptoms
• The Importance of Support - Dianna shares how the Rheum to THRIVE group support & education program was a “lifeline” and helped her get out of a cycle of self-blame. She highlights the ways she learned how to explain her condition to others and process some of the social effects and pressures (such as not drinking wine)
• Anxiety and Uncertainty: Cheryl & Dianna discuss how uncertainty and not being able to be in control triggers their anxiety
• What helps you cope? “It’s a gift knowing you can’t solve it;” Dianna shares what else is in her toolbox alongside acceptance: exercise, movement, journaling, social time and more
• The role of writing and journaling in Dianna’s life
• Rapid fire questions
  • Best advice for newly diagnosed patients? Encourage others to join Rheum to THRIVE or a similar program for social support; trust in the process
  • Favorite arthritis gadget or tool in your arthritis toolbox: Compression gloves - from Grace & Able
  • Do you have a favorite mantra or inspirational saying? - “Si combino tuto” - everything works out;
  • What’s bringing you joy right now?  The fall weather; essay published - 2 online
  • What does it mean to you to live a good life with rheumatic disease / thrive with rheumatoid arthritis: to accept the new me; just relax into it;

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

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.

For Full Episode Details + Show Notes

Go to the episode page on the Arthritis Life Website.

Episode at a glance:

• Marion’s Diagnosis Story
• Marion’s Treatment Journey: changes in medications over 15 years,
• Working while Living with Rheumatoid Arthritis: from struggling in silence to disclosing and getting support
• How Marion went from feeling guilty and afraid she’d be seen as “lazy” to realizing her condition wasn’t her fault
• Values: How RA led Marion to “crystallize her values” and redefine what success means to her, and to become more assertive
• The role of online support communities in Marion’s coping and acceptance
• Rapid fire “lightning round” questions

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

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!

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 Episode Show Notes Including Transcript

See the show page on the Arthritis Life Website here.

Nitika and Cheryl discuss how acceptance is an ongoing journey when living with multiple chronic health conditions, and share insights into how they cope with uncertainty. Nitika shares how and why she founded the incredibly impactful Chronicon conference and online community which inspires and uplifts people living with chronic illness around the globe. Nitika and Cheryl also discuss what brings them joy and how they balance present moment acceptance with hope for the future. 

Episode at a glance

• Nitika’s emotional journey with psoriasis and psoriatic arthritis in childhood
• How acceptance of chronic illness is an ongoing journey: Nitika shares how a new diagnosis last year challenged her, but she eventually concluded that “acceptance and hope aren’t not mutually exclusive.” Cheryl & Nitika discuss how acceptance can sometimes bring up grief or other uncomfortable emotions.
• Uncertainty: Cheryl & Nitika explore how they have coped with uncertainty
• Listening to your body & nurturing yourself: Nitkka shares how she learned the importance of listening to her body and how she integrates nurturing self care into her daily routines
• A discussion about how to accept the need for medications along with utilizing non-medicinal disease management tools
• The “a-ha” moment that inspired Nitika to start the event & community Chronicon !
• Community: Cheryl & Nitika discuss the importance of supportive and uplifting communities when you live with chronic illness

Medical disclaimer:

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

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!

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.

For Full Episode Show Notes + Transcript

Go to the episode show notes page at the Arthritis Life website.

Episode at a Glance:

• Wendy’s diagnosis story of juvenile rheumatoid arthritis as a baby
• Growing up in the 1970s and 1980s with JRA: Wendy shares her ups and downs, from acceptance in grade school to isolation in high school and young adulthood (when she first met someone with her same condition at age 26)
• Treatments: Reflections on how treatments have changed in the current era as compared to the 1980s
• Career choices with JRA: Wendy’s shares how she managed a career as a computer programmer at Hewlett Packard after initially hoping to become an artist.
• Disability and  “medical retirement:” Wendy wants to keep working longer but her job is not conducive to her medical needs; she has a smooth process of going on social security disability but experiences a very tedious and dehumanizing experience while attempting to utilize her long term disability insurance benefits through her company.
• Importance of Art and Mandalas in Wendy’s coping:  “Art was the one place I could be free.” Wendy takes a healing art class with a focus on mandalas and shares how “it’s about getting quiet with yourself”
• Support groups: Wendy gets involved with the Arthritis foundation support groups and then is asked Kim Burda to help admin Co-Admin of the 26,000 person “Rheumatoid Disease (RD) - Laughing, Living, Loving, and Learning” for people with various forms of Rheumatoid Disease. SHe shares the ups and downs of being an admin.
• Wendy’s best advice newly diagnosed patients? Find a good rheum who will partner with you and share and answer questions. Don’t be afraid of the meds.

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 Sponsor

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.

For full episode details including a transcript

Go to www.MyArthritisLife.Net

In this episode, Kate shares her journey getting diagnosed with psoriatic arthritis while working as a chef in London. She opens up about her post-diagnosis emotional roller coaster and shares how joining Cheryl’s Rheum to THRIVE online support and education program helped her feel more confident, empowered and supported.

 She also details other programs that helped her including a mindfulness course and CBT therapy.  The episode ends with Kate sharing what it means to her to live a “good life” with rheumatic disease.

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

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 next group today! 

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 episode details and transcript

Please go to the show page on www.MyArthritisLife.Net for full episode details including a transcript.

Content Warning - This episode contains profanity and explicit sexual content 

Episode at a glance:

• Liv’s diagnosis story for juvenile idiopathic arthritis and uveitis
• Highlights and lowlights of growing up with juvenile idiopathic arthritis
• Liv’s Fitness and self-advocacy Journey: switching jobs to protect her energy and stress levels and finding her own personal training business MovetoLiv
• When to push and when to rest?
• Mindfulness and being present even in pain discussion
• Busting the biggest myths about arthritis-friendly / flare friendly workouts
• Why is intimacy is so important for spoonies  - learning to connect with our bodies, trust them, and communicate with partners. Live shares how sexual intimacy, kink, and BDSM found a place in her chronic pain management.
• Liv’s best Advice for the Newly diagnosed

Medical disclaimer:

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

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 today! 

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 episode details including transcript:

Go to www.MyArthritisLife.Net for full details and a transcript.

In this episode, parents Leeza Broome and Courtney Bruce share why arthritis-specific summer camps have been such a lifeline to their families over the years. As volunteers, they helped start the very first Pacific Northwest family camp for kids with arthritis, “KAT-Fish Camp,” which has historically been put on by the Arthritis Foundation. 

Cheryl also shares her experiences volunteering at the camp. All three speakers share their favorite camp memories from the last two decades and explore the importance of community and belonging in chronic illness communities.

Episode at a glance:

• Diagnosis story: Courtney shares her daughter’s diagnosis story at 18 months, which started with a swollen knee and a misdiagnosis.
• Diagnosis story: Leeza shares her son’s diagnosis story, which started with difficulty getting out of the toddler bed and swollen fingers.
• Why is it important to have family camps for kids with juvenile idiopathic arthritis? Leeza and Courtney share what they’ve learned in the parent education sessions, from advocacy to emotional tips for coping with injecting a child who’s afraid of needles. Cheryl, Leeza and Courtney explore the emotions that parents, children with JIA and siblings experience at these camps including: relief, shared anger at similar negative experiences people have gone through, envy, hope and more.
• Favorite camp memories: all three speakers share their favorite memories, from S’Mores and campfire songs to talent shows.
• Where can you sign up to volunteer at a camp or attend one? Links below!

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

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 September 2022!

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 Episode Details, Links plus Transcript:

Go to the show page on the Arthritis Life website.