Arthritis Life

Even after getting diagnosed with bi-lateral pulmonary emboli, a necrotizing lung nodule and periodic paralysis, Kim was repeatedly dismissed as being “hysterical,” “just anxious” and having “nothing wrong” with her when it turns out her lung had collapsed, she had an air leak on her lung suture line and she also had rheumatoid arthritis.  Kim shares her experiences and perspectives with candor in hopes that no one who’s gone through similar experiences will feel alone.Episode at a glance:Kim’s journey going from 90 minute daily bike rides to not being able to walk due to a collapsed lung and other undiagnosed health issues.Kim’s multiple experiences with medical gaslighting, or being dismissed by medical providers, including being erroneously diagnosed with “conversion disorder” when she presented with lower body paralysis.Kim files a complaint with the hospital (who employed Kim’s original surgeon who told her “nothing’s wrong” when she in fact had a collapsed lung) and nothing happens.Kim and Cheryl discuss ways the medical system can be improved to avoid medical gaslighting in the future, including using systems like “risk management.”Kim shares what it’s been like to balance treatments for rheumatoid arthritis with hypokalemic periodic paralysis.Kim shares how she’s mentally coped with everything she’s been through.SUICIDE PREVENTION RESOURCE: If you are in the USA and you are in crisis, please call the National Suicide Lifeline at 1-800-273-8255. For a list of international suicide hotlines by country see this page.Kim and Cheryl discuss what it feels like to feel “trapped” in your own bodyKim & Cheryl discuss “thin privilege” and how people who are overweight face additional stigmas when seeking medical careKim & Cheryl discuss the “inconvenient truth” that so much of our health is influenced by luck rather than things we can control (like diet). Kim discusses equity versus equality and relates those concepts to healthcareKim shares “a day in the life” and what tools help her function on a daily basis.’Kim shares what brings her joy in life, including rescuing kittens.Kim provides an alternative to the 1-10 pain scale.Speaker Bios:Kim:Kim has experienced chronic intermittent pain since she was seven years old. She has been written off by doctors as being depressed, anxious, over exaggerating. Her severe pain experience has been in her head/neck/shoulders but more recently it has extended from her hips to her feet and from her shoulders to hands. In between her daily struggles with pain, she has experienced massive bi-lateral pulmonary emboli, a lung nodule that started necrotizing her lung tissue, hypermobile joints and most recently periodic paralysis. The necrotizing lung nodule was determined to be rhematoid in nature so that put her into the rheumatoid family and a working diagnosis of rheumatoid arthritis. Outside of illness, Kim is an academic librarian, an endurance cyclist, newborn foster kitten parent and lover of state and national parks. Cheryl:Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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.This episode is brought to you by Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected. Join the waitlist today! Episode links:SUICIDE PREVENTION RESOURCE: If you or someone you know is suicidal, please call the National Suicide Lifeline at 1-800-273-8255. For a list of international suicide hotlines by country see this page.Kim’s contact information: Klooby2 -at- gmail.comCheryl’s Arthritis Life social media pages:Cheryl &  Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseArthritis Life Program LinksJoin the waitlist for Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected. Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this conditionArthritis Life Youtube channelMedical 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.  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:Suruthi’s diagnosis story of juvenile idiopathic arthritis (JIA) at age 3What it was like to be a small child with hip displasia and JIA, unable to walk for long periods of time, including social isolationThe challenges Suruthi faced in college with some “friends” and roommates not understanding her condition, accusing her of faking and ultimately bullying and shaming herHow Suruthi’s painful experiences and her volunteer work with “Versus Arthritis” in the UK led her to create her “Fight Rheumatoid Arthritis” instagram account and be more open about her storyHow Suruthi’s south Asian culture affected her experience of disability and chronic illnessHow and why Suruthi is pursuing a PhD in chemical engineering“A Day in the Life” for Suruthi todayWhat Suruthi wishes everyone knew about living with arthritis Speaker Bios:Suruthi, I am 22  and I have had Juvenile Idiopathic Arthritis since I was three! Having arthritis has impacted my life in many ways but I rarely saw people like me talking about it which is what led me to start my instagram account, fightrheumatoidarthritis.Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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.This episode is brought to you by Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected. Episode links:Suruthi account:Instagram @fightrheumatoidarthritisCheryl’s Arthritis Life social media pages:Cheryl &  Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc For full episode details and links, go to: https://arthritis.theenthusiasticlife.com/2021/07/20/whats-it-like-to-grow-up-with-juvenile-idiopathic-arthritis-suruthis-gnanenthirans-journey-from-isolation-to-advocacy/  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:Karol’s experience getting diagnosed with JIA at age 13 and being angry, terrified and grumpy about itThe importance of disability representation beyond the cliche “inspirational” storyHow Karol learned the importance of partnership with a doctor and taking an active role in her care in her 20sWhy Karol identifies as disabled, rather than a “person with disability” (including a discussion of the #SayTheWord, #TheWordIsDisabled movement)How both Cheryl and Karol have confronted their internalized ableismWhy Karol wishes she had listened to her occupational therapists earlier, and why occupational therapy is so important for people with rheumatic diseasesExcerpts from Karol’s award winning young adult novel “Cursed,” about a young woman with JIA who is “frank, funny and full of f-bombs.”The importance of disability prideSpeaker Bios:Karol Ruth Silverstein is a children's book author and screenwriter. She was diagnosed with juvenile rheumatoid arthritis at 13 and has identified as disabled since 21. Originally from Philadelphia, she now lives in West Hollywood with her two exceptionally fully cats. You can find her website at: https://www.karolruthsilverstein.com/ Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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.This episode is brought to you by Rheum to THRIVE, an online support group and educational program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. 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.\For full episode links go to:  https://arthritis.theenthusiasticlife.com/2021/07/14/why-do-disability-pride-and-disability-representation-matter-with-cursed-novelist-and-jia-patient-karol-ruth-silverstein/ 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:Introduction and Agenda Review (1:00)Definition of a Flare Up for rheumatic disease (which includes ankylosing spondylitis, psoriatic arthritis and rheumatoid arthritis) (6:30)What causes flare-ups, and why is it so important to discover our own unique flare triggers? (7:40)Focus on Pain: tools to prevent pain and reduce existing pain (25:00)Focus on Fatigue: tools to prevent and reduce fatigue (31:00)Focus on Stress: ways to decrease stress levels & cope with existing stress (37:00)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 SponsorRheum 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! Speaker Bio:Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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:Resources discussed in this episode:Video recording of the “Build Your Rheumatic Disease Flare Up Toolkit” webinar (includes presentation slides)"Multiple Factors Associated With Fatigue in Rheumatoid Arthritis" research articleLink to my webinar about stress managementWhat is ACT - acceptance and commitment therapy: Information siteThe Happiness Trap - Book and online program from Dr. Russ Harris - explains Acceptance and Commitment TherapyApps for symptom tracking:Cheryl doesn’t have one favorite but some she finds helpful are: Symple, MyArthritis, OpenCare, Wave, MyRaTeam, MyVectra, Chronic Insights, RA Healthline, Arthritis Foundation Track & ReactRecommended episode: 8 Things everyone who loves someone with arthritis should knowFree Facebook group: Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupArthritis Life Program LinksRheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected.Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.Cheryl’s Arthritis Life social media pages:Cheryl &  Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLifeArthritis Life Facebook PageCheryl’s Twitter: @realccArthritis Life Youtube channel Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

This episode includes discussions about:How to decide whether or not to have children while living with a chronic illnessTips for comfortable sex with chronic painFrequently Asked Questions about pregnancy with rheumatoid arthritis, including how to find out which medications are safeCheryl and Mariah’s experiences with childbirth and C-sectionsHow frequent is the postpartum flare-up and how can it be prevented?Advice for feeding a newborn with rheumatoid arthritis, including discussions about ergonomics, breast versus bottle feeding and “fed is best.”Practical tips for managing the physical and energy demands of new babies including diapering, clothing, baby wearing and more!This is part one of a two part series - later, Mariah and Cheryl will share tips for parenting toddlers / “big kids” and managing mental health as chronically ill parents!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.This episode is brought to you by Rheum to THRIVE, an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected. Episode links:Resources discussed in this episode: Mother To Baby - nonprofit resource for medication safety during pregnancy and breastfeedingPast episodes of Arthritis Life podMariah’s book review from rheumatology nurse practitioner Iris Zink Sex – Interrupted: Igniting Intimacy While Living With Illness or DisabilityHealtheVoices - patient advocacy conference Mariah attended Mariah’s links:Twitter & Instagram: @mamasforwardFacebook page: https://www.facebook.com/mamasforwardFacebook group: https://www.facebook.com/groups/mamasfacingforwardArthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupJoin the waitlist for Rheum to THRIVE an online support group and education program Cheryl created to help people with rheumatic disease become more confident, supported and connected. For full episode details, including a detailed episode breakdown, go to: https://arthritis.theenthusiasticlife.com/2021/06/17/tips-for-pregnancy-and-postpartum-with-rheumatoid-arthritis/ Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Speaker bios in order of appearance:Kristen Brogan: Kristen has been living with rheumatoid arthritis and Sjogren's since 2018. She is a Board Certified Behavior Analyst and has a PhD in Cognitive and Behavioral Sciences, which she uses to inform behavioral chronic illness coaching that she provides for others living with chronic illness. In her free time, she enjoys writing, yoga, meditation, and spending time with her partner and their three dogs. Links: IG handle @WarriorsMoveMountains and my website which is www.WarriorsMoveMountains.WordPress.comEmma  is a 24 year old living with inflammatory arthritis in Ontario, Canada.Gittel is a 32-year-old daughter of immigrants from Central America, who was born and raised in downtown Los Angeles. She is a "forever teacher" who is no longer in the workforce due to her diagnosis of ankylosing spondylitis (among others). Currently, she is riding out the pandemic at her parents' and is learning to manage her illness as best she can---one moment at a time. She can be found on IG at @gittieMelissa McKenzie is a writer from Jamaica who can be found at @pennedbymelissa on Instagram.Joel Nelson: Writer. Arthritis Advocate. Dad. Sharing my story of Juvenile Idiopathic Arthritis to raise awareness. Specialising in pain, parenting and mental health. Also writes for leading charities and organisations.Blog: https://joelvsarthritis.co.uk/Joel’s Facebook: https://www.facebook.com/joelvsarthritis.Joe’s Twitter: https://www.twitter.com/joelvsarthritis.Joe’s Instagram: https://www.instagram.com/joelvsarthritis.Joel’s Youtube Channel: https://www.youtube.com/channel/UCZrEJm2eWSSpXx8qMTjdgWA?view_as=subscriberCheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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. You can find Cheryl at:Cheryl &  Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Youtube channelUnity Schmidt: Born into a near-death experience, my journey with JRA became official shortly after my 1st birthday; activating my lifepath to move from chronic pain to purpose. As a life coach, author and teacher, I help my clients understand their energy, move through any blocks/challenges, and awaken their inner magic to reach their biggest dreams! Learn practical, magical ways to uplevel your life and choose your adventure with faery godmother life coaching, classes and my "SOS Energy Report" now available online.Healing with Unity on YouTubeUnity Schmidt: instagram.com/unityschmidtwww.HealingwithUnity.comMary (Mimi) Cross, age 27, diagnosed with rheumatoid arthritis 7 years ago, runs Inflammation Vacation and can be found on Instagram at @inflammationvacation.Ashley Shrum is a physical therapist living with arthritis who can be found on Instagram at @a.shrummerEffie Koliopoulos is a freelance writer and rheumatoid arthritis patient advocate. She created her blog Rising Above Rheumatoid Arthritis in 2016, after being inspired to share her story more publicly and connect with others after undergoing a total knee replacement.Currently residing in Chicago, she is working on her debut children’s picture book, enjoys creating video content for her YouTube channel and other projects. Effie’s BlogEffie’s InstagramEffie’s TwitterEffie’s Rising Above RA RAra Shop Designs (Merch): Effie’s Youtube Channel: RA and MyselfThis podcast is brought to you Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist  today!Arthritis Life links:Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseArthritis Life Program LinksJoin the waitlist for Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.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.Here's the show breakdown:01:00 Kristen Brogan: “An Unexpected Rebirth” (Sjogren’s)05:00 - Emma (inflammatory arthritis)7:55 - Gittel (AS) - “Being at War with Myself (aka the Rocky Relationship with my Body)”12:50 - Melissa - “I am More than this Grief”18:00 - Cheryl Crow - “A Pleasure to Have in Class”27:00 - Joel Nelson - “The Arthritis Tease” and “The Invisible”30:10 -  Unity - Croon33:40 - Gittel - additional biographical info34:40 - Melissa - “Brain Fog” poem37:10 - Mimi Cross (Inflammation Vacation)38:15 - Ashley S “You Say You’ll Never but I do.”41:25 - Gittel - Second poem43:00 - Effie - reading from Brenda Klean-Sasser poem (2012) “100 Shades of Blue” Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Topics covered in this episode include:Stigmas around disability within South Asian communities.Sukhjeen’s personal story with rheumatoid arthritis and how that led her to form the nonprofit Chronically BrownExploration of medication shaming.Lack of representation of people of color’s voices in online chronic illness communities.Discussion about how South Asian practices (like yoga, herbal remedies and turmeric) are sometimes bashed within the chronic illness community.Dos and Don’ts for when reacting to someone’s chronic illness or disability.What should medical professionals consider when treating someone of South Asian descent?Exploration of white privilege and microaggressionsSpeaker Bios:Sukhjeen Kaur is the Founder of Chronically Brown which aims to address the ableism in South Asian communities. Chronically Brown is a non-profit organisation dedicated to empowering South Asians with invisible & visible disability through education and support. Sukhjeen has lived with rheumatoid arthritis for 2 years.Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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 enjoyable patient education and self-management resources.This episode is brought to you by the Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life. Episode links:Sukhjeen Kaur links:Facebook: https://www.facebook.com/ChronicallybrownIG: https://www.instagram.com/chronicallybrown/Twitter: @chronicbrown  https://twitter.com/chronicbrownWebsite: https://chronicallybrown.com/Resources and Articles mentioned in this episode:South Asian culture affects people’s experiences with chronic illness.  Medication shaming American College of Rheumatology - 2021 Photography contest for skin of color (due date - July 2021)“Not everyone with a chronic illness is a skinny white woman” graphic, which was inspired by “Invalid Art”Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseArthritis Life Program LinksJoin the waitlist for Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.Cheryl’s Arthritis Life social media pages:Cheryl &  Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Youtube channelMedical 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 Breakdown:1:00 - Sukhjeen shares her initial difficulty adjusting to her chronic illness due to lack of representation of people of color in online communities. She shares how she learned to accept her condition after connecting with others from her cultural community.5:30 - Sukhjeen explains how and why she formed the nonprofit Chronically Brown. She shares how she grew up in a predominantly white area and felt her cultural background was erased during her youth. The exclusion and stigmas for people of color with disabilities leads Sukhjeen to form Chronically Brown. 9:05 - What does “intersectionality” mean and how does that apply to a person of color living with a disability? What does it feel like to be excluded from both your culture and your disability community? 10:30 - Specific stigmas around disability within South Asian communities, including “What will people say?” Pressure to hide your chronic illness, not use mobility aids, “fix” or cure your illness, maintain an image of perfection and more examples. 15:00 - How Sukhjeen became comfortable being more outspoken about her experiences with disability. 20:00 - Sukhjeen explores medication shaming within South Asian communities and the chronic illness community at large. 22:00 - Exploration of how South Asian cultural treatments (like yoga or herbal remedies or turmeric) are sometimes bashed within the chronic illness community. The importance of the language we chose; “have you tried yoga” can be exclusive or derogatory towards South Asian communities.26:45 - Exploration of the phrase “herbal medicine” and how that often signifies nonwhite practices versus “Western medicine.” 28:35 - Recognition of the emotional and energetic labor that goes into educating others about culture. Recognition that not every South Asian person wants to speak about their culture. 30:30 - Sukhjeen explains her “Dos and Don’ts” when reacting to someone’s chronic illness or disability, and what to say when you don’t know what to say. Why is it so harmful when people say things like “you just need to push through it” or “my friend tried XYZ and they are cured, you should too.”35:15 - What does Sukhjeen want medical professionals to know about South Asian cultures and disability? 41:00 - Sukhjeen’s final message: the importance of including South Asians in all efforts around chronic illness and disability, and uplifting the voices of people of color.44:00 - Reflection on #DisabilityTooWhite. The importance of representation of people of color’s experiences. Cheryl’s reflection as a white person about the importance of recognizing your blind spots and subtle forms of racism and biases. 46:00 - Sukhjeen’s examples of racial microaggressions when filling her medication and a pharmacist delaying her medication due to his difficulty understanding her name.50:00 - Cheryl’s reflections on having white privilege, the importance of recognizing it and using it in a helpful way rather than taking advantage of it.51:30 - Where to follow up with Sukhjeen. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Topics include:Joel shares what it was like to grow up with juvenile idiopathic arthritisJoel explores the vulnerability of doctor patient interactions and the concern chronic illness patients often have of being perceived as hypochondriacs.Joel and Cheryl discuss the imperfections of our current health systems, and the fact that “No Established Cause doesn’t mean No Problem.”A group Pain Management program helps Joel rewire how he thinks about painCheryl & Joel share tips and exercises for mental wellbeing despite chronic illnessSpeaker Bios:Joel Nelson: Writer. Arthritis Advocate. Dad. Sharing my story of Juvenile Idiopathic Arthritis to raise awareness. Specialising in pain, parenting and mental health. Also writes for leading charities and organisations.Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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.This episode is brought to you by the Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.Episode links:Joel links:Blog: https://joelvsarthritis.co.uk/Joel’s Facebook: https://www.facebook.com/joelvsarthritis.Joe’s Twitter: https://www.twitter.com/joelvsarthritis.Joe’s Instagram: https://www.instagram.com/joelvsarthritis.Joel’s Youtube Channel: https://www.youtube.com/channel/UCZrEJm2eWSSpXx8qMTjdgWA?view_as=subscriberBooks and resourcesThe Happiness Trap book explaining Acceptance and Commitment Therapy conceptsVersus Arthritis nonprofit with helpful resourcesArthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseArthritis Life Program LinksJoin the waitlist for Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.Cheryl’s Arthritis Life social media pages:Cheryl &  Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Youtube channelMedical 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.Here's the show breakdown:1:00 - Introduction and Joel’s diagnosis story.3:00-11:30 - Joel reads from his blog post, “No established cause doesn’t mean no problem.”11:45 - Cheryl & Joel discuss the vulnerability of seeing new specialist doctors. Joel expands on his experiences with the neurologist who had not reviewed his medical chart.15:15 - Cheryl & Joel discuss being worried about being perceived as a hypochondriac, and the challenges of filtering what information you share with a doctor / medical provider.22:45 - Joel expands on his emotional response to the test results letter he received from the neurologist with his test results.  Cheryl & Joel discuss the imperfections of our current health system.28:00 - Cheryl expands on how patients who have difficulty functioning in daily life deserve access to care, for example occupational therapy, even if there is “no known cause.”30:00 - Joel explains what his GP (primary care) said after his neurological test results were normal. He went through pain management therapy which included disability adjustment training. He made a conscious choice to put his energy into adapting to it and making peace with it, yet continues living in fear that a neurological episode will happen again. 35:30 - Joel talks about his Pain Management program, which included group therapy, individual therapy, occupational therapy, physical therapy, learning about pain and special wellbeing topics. It helps him “rewire how he thought.” 40:00 -  Cheryl’s perspective about finding a balance between trying to heal or eliminate pain, and building our capacity to adapt to our life as it is, even including pain.42:30 - Joel describes a helpful exercise from his pain management program: writing down the biggest issues with your current situation and recognizing that pain wasn’t necessarily the biggest problem, it was partly the spiraling thoughts around it. 46:30 - Cheryl’s analogy for positive versus negative thoughts - like a radio station you can choose to fight them, try to constantly turn them up or down or drown them out, or we can just acknowledge that they are simply there, sometimes they’re helpful, sometimes not and I can continue going where I want to go despite them. 48:00 - Joel’s realization that he might not be able to turn “off” the negative thoughts, but he can let them have less power over him. Example of his work as an IT manager and how he struggles with guilt when he takes time off.  51:30 - Cheryl and Joel reflect on how having to say no and take sick days challenges your sense of self. Discuss the challenges of activity pacing when you are a parent.55:00- Concluding thoughts - link between physical and mental health. Don’t be afraid to ask your medical providers questions and be involved with decision making. 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:Renee’s diagnosis journey after a decade of mystery symptomsHow rheumatoid arthritis has affected Renee’s parenting and homeschoolingRenee’s Christian faith helps her cope with challenging timesCheryl and Renee share their different treatment choices (western medicine and natural only approaches) and how important it is to respect each other despite different choicesHow Renee adopts an anti-inflammatory lifestyleThe dark side of focusing on wellness and diet: Renee shares about orthorexia, an unhealthy obsession with healthy foodWhy Renee started her Rheumatoid Arthritis Mamas Sisterhood Facebook groupSpeaker Bios:Renee is a former middle school teacher turned homeschooling mom of three. She’s been married for 17 years and lives in West Michigan. She started The Rheumatoid Arthritis Mama after her RA diagnosis in late 2017 when she began sharing her journey, faith, and experiences with RA openly and authentically on Instagram and Facebook. Since then, Renee has been interviewed by and featured in media outlets such as Healthline, Health Central, CreakyJoints, WEGO Health, Self Magazine, and more. Her Facebook support group, The Rheumatoid Arthritis Mamas Sisterhood, has nearly 2,000 members and she uses the group as a space for all women to come together regardless of their treatment choices to support one another, share their experiences, and connect with other autoimmune disease warriors. Renee has a passion to support and encourage other women (especially moms) who are battling autoimmune diseases. Her goal is to provide others with encouragement and hope, feel less alone, and inspire them to live their best lives despite battling autoimmune disease. Her newest endeavor, a podcast called Every Day with Autoimmune, is set to launch during the summer of 2021!Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for eighteen 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.This episode is brought to you by the Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.Episode links:Things discussed in episodehttps://www.nationaleatingdisorders.org/learn/by-eating-disorder/other/orthorexiaACR guidelines“Food freedom” Elizabeth Dahl - woman of wellness -Renee linksInstagram: https://www.instagram.com/the_rheumatoid_arthritis_mama/FB: https://www.facebook.com/TheRheumatoidArthritisMama/FB Support Group: http://www.facebook.com/groups/TheRheumatoidArthritisMamasSisterhood Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseArthritis Life Program LinksJoin the waitlist for Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected.Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.Cheryl’s Arthritis Life social media pages:Cheryl &  Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Youtube channelMedical 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.Here's the detailed show breakdown:2:14 - Renee’s journey getting her RA diagnosis after a decade of mystery symptoms. 5:23 - Renee has mixed emotions after her diagnosis: fear and confusion, mixed with relief that she finally had a definitive answer. 6:45: Discussion about how common it is for people with autoimmune symptoms to be dismissed by medical professionals.8:30 - How Renee’s three children have become more compassionate and sensitive as a result of mommy’s rheumatoid arthritis. How she initially tried to hide her diagnosis from them, and how she then realized she needed to be open with her children and husband.  13:15 - Renee opens up about her infertility journey and what she learned about communication, stress management and how to relinquish control.15:40 - How Renee structures her daily routine to suit her RA needs and her family’s needs.18:10  - How Renee’s Christian faith and eternal perspective helps her cope with RA.20:00 - Cheryl reflects on how, despite being an agnostic / atheist now, she carries forward lessons she learned as a child about the importance of unconditional love and the idea that everyone is worthy even if they have a health challenge.21:55 - Cheryl & Renee discuss how different people have different treatment paths and the divides within the RA community at times between a “natural” and a “western medication” approach. How Renee explored lifestyle and diet and worked with a functional medicine doctor. 26:35 - While Renee is able to control her RA with lifestyle and diet, she will never fault or judge anyone for taking medication.27:35 - Cheryl’s perspective as someone on three RA medications. The importance of differentiating as patients between sharing our experiences and then making the leap that *because* it worked for me, it 100% will work for you. Important to remember the current scientific evidence at the population level favors an early aggressive medication approach. 29:20 - How Renee’ focuses on an overall anti inflammatory lifestyle; an integrative approach - not “either/or” but “both.” 30:00 - How Renee’s experience with unkindness and negativity in Facebook groups inspired her to start her own group: the Rheumatoid Arthritis Mamas Sisterhood.34:05 - The dark side to obsessing over “healthy food,” you can become orthorexic - obsessive with eating only healthy or “clean” foods.36:35 - Patients are the expert on our own patient journeys but that doesn’t mean that we know what will work for another patient. 37:10  Renee shares the foods that trigger *her* inflammation. 38:45 - How Renee healed herself from her negative emotions around food and has built a healthy relationship with food through Elizabeth Dahl, a food coach. How to learn food is not the enemy. Learning to be careful about what she eats without being militant has helped her.43:35 - Discussion of disease-specific Facebook groups, how it’s important to have a place to vent sometimes but it’s also important to find groups that suit your needs, and if you’d like a more supportive and positive place there are groups for that too.47:25 - Concluding thoughts. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Specific topics include:Julie’s experience with multiple knee surgeries Avascular Necrosis leads to Complex Regional Pain Syndrome and Julie is bedriddenfor 6 monthsHow a trip to Disney World led to Julie’s epiphany that she should share her story and start a blogHow Julie put her Information Technology (IT) degree to use while tracking her symptoms and discovering her unique inflammation triggersHow Julie discovered the most important tools for living a healthy, full life with PSAJulie’s current role as a patient advocate with WEGO healthHow PSA affected Julie’s dating life and how she met her now husbandJulie’s experiences with pregnancy and parenting with PSAThis episode is brought to you by the Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.Speaker Bios:Julie Croner, a psoriatic arthritis patient leader, is on a mission to advocate for ALL advocates. She's the Vice President of the Patient Leader Network at WEGO Health and was named to MM&M's inaugural class of 40 Under 40 in 2020. Julie has been featured by Stanford Medicine X, the National Psoriasis Foundation, Everyday Health, WebMD, HealthLine, and more. Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen 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:Julie’s sites:Blog: Itsjustabadday.com Twitter: twitter.com/justagoodlife Facebook: Facebook.com/itsjustabaddaynotlife Instagram: Instagram.com/itsjustabaddaynotlife LinkedIn: www.linkedin.com/in/juliecerrone  Blog Email: justabaddaynotlife@gmail.com Work email: Julie.croner@wegohealth.com  Organizations mentioned in this interview:WEGO HealthMothertoBaby - research studies of medications and pregnancy / breastfeedingMindful Mamas AppArthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseArthritis Life Program LinksJoin the waitlist for Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.Cheryl’s Arthritis Life social media pages:Cheryl &  Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Youtube channelMedical 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.Here's the show breakdown:1:00 - Introduction to Julie.2:00 - Julie’s winding journey to a psoriatic arthritis diagnosis: knee surgeries / swelling from fifth grade until after college and during work as an Information Technology (IT) consultant.4:55 - Julie gets the adult diagnosis of psoriatic arthritis (PSA) and her rheumatologist helps get it under control. She’s able to connect the dots of her chronic health issues in retrospect and see how it all relates to psoriatic arthritis (PSA).8:24 -  Julie also experiences avascular necrosis in the femur bone (leg) which led to complex regional pain syndrome (CRPS). She started connecting to other patients online, got medication for PSA and started exploring diet and lifestyle. 9:48: Julie researches anti-inflammation lifestyle approaches, and uses her IT consultant skills to make an excel spreadsheet to track everything (food, movement, mood, medications, etc) for 6 months and discovered her unique inflammation and flare  triggers. 10:55 The BEST thing she did in her journey!11:20 - Julie discovers that her body is sensitive to food triggers. She discovers that gentle movement, meditation and mindfulness helps her. She continues going on and off medications when needed. 12:40 - Cheryl reflects on the importance of discovering your own unique triggers and not thinking there is a one size all solution. 14:00 - Julie’s worst food triggers for joint inflammation. (15:12) 15:44 - Julie is bedridden for 6 months due to her Avasular Necrosis and is depressed. Her parents take her to DisneyWorld and she has an epiphany after doing a singing competition!  She decides to share her story through starting a blog: “It’s just a bad day not a bad life.”19:20 - After being on disability for four years, she decides to focus on a career in patient advocacy rather than IT consulting.20:30 - Julie starts working for WEGO Health, a network of patient leaders. She helps patients and loved ones use their story and get connected to companies wanting their insights.23:40 - Why Julie thinks it’s so important for patients to share our stories: how she found an answer to her avascular necrosis due to seeing another patient’s story online.26:50 - How Julie’s health conditions affected her dating life, and how she met her husband. Her husband said, “You talk like you USED to be great, and the person I see IS really great! (28:13)”30:00 - How did PSA affect her family planning with her spouse who is in the army. When pregnant she felt very nervous and overwhelmed.  She signed up for a MothertoBaby study.33:45 - During her first pregnancy PSA went into remission, psoriasis in 1st trimester. Second pregnancy didn’t go into remission. 35:15 - What helped her when babies were little: asking for help, planning ahead, pacing yourself. 37:15: How Julie copes with big emotions while parenting: Headspace app and Mindful Mamas app. 39:36 - Julie’s best advice for newly diagnosed patients - empower yourself and be a partner with your medical team.40:45 - Cheryl and Julie’s advice to patients who are overwhelmed when “doing their own research” - how to evaluate which resources are high quality information and which are low quality or dangerous. Reflections on how to navigate disease-specific Facebook groups.44:15: Julie’s concluding thoughts: if you are dealing with an autoimmune disease, you are not alone.  Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.