Arthritis Life

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

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

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

Episode at a glance: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/  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, 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.  Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

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

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

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

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.