Arthritis Life

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. 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Episode at a glance:Eileen shares her rocky road to an RA diagnosis when he son was two years oldHow Eileen's blog led her to patient advocacy and research How symptom tracking helped Eileen reduce pain and improve fatigueHow exercise helps Eileen reduce pain and improve fatigueWhat it's like to be a single mom with RAReflections on  mental health while living with chronic illnessSpeaker bios:Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver British Columbia Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador. When not advocating she is writing about her experience with arthritis through Creaky Joints, Chronic Eileen or can be found being a mom to her son Jacob.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, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Episode links:Find Elieen’s writing on:Chronic Eileen - Eileen’s blog and websiteArthritis Society - Canadian nonprofit Arthritis Research Canada CreakyJoints - research opportunities and Eileen’s writingArthritis Power app from CreakyJointsArthritis Foundation - research and advocacy opportunitiesAmerican College of Rheumatology - patient advocacy and engagement opportunitiesWhat it’s like to have a mom with arthritis: Article written by Eileen’s son JacobExample article of Eileen’s from HealthlineEileen on Instagram: @chroniceileen Cheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseFacebook group: Arthritis Life Podcast, Practical Tips and Positive, Realistic SupportArthritis 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 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:1:40 - Eileen’s diagnosis story: many years of symptoms prior to her diagnosis when her son was two years old. 5:50 - How Eileen’s symptoms affected her ability to take care of her baby. 8:16 - Eileen’s devastation after receiving her diagnosis due to seeing her aunt suffer from severe rheumatoid arthritis and pass away the same week.10:00 - How Eileen learned to trust her medical providers.11:20 - What helped Eileen learn to cope with her RA and share her story publicly; how others responded to her story and how  writing introduced her to advocacy efforts.15:00 - How others’ negativity motivated Eileen, and Eileen shares some of the positive responses to her writing.17:45 - Eileen describes participating in arthritis research on symptom tracking using a FitBit, with a physiotherapist. Through tracking she started seeing patterns between menstrual cycle, sleep, exercise, rest.22:30 -  Eileen learned the benefits of strength training and helped researchers explore barriers to patients participating in strength training. 26:00 - Physical activity doesn’t have to look like formal exercise, it can be as simple as gardening, Zumba, yoga, or dancing.29:00 - How the pandemic affected Eileen’s exercise routine and pain levels.31:30 - How exercise helps Eileen with fatigue. 34:00 - Eileen shares her journey with depression and mental health.36:20- What’s helped Eileen cope with depression and anxiety from rheumatoid arthritis & pain.38:00 - Eileen’s advice to other parents with rheumatoid arthritis and reflections on what her son has learned from having a mom with a disability.  41:00 - How her rheumatoid arthritis has made her a better mom and changed her priorities44:20 - The different forms patient advocacy can take.46:00 - Eileen’s final message: if you’re interested in getting involved in research, don’t hesitate!  Hosted by Simplecast, an AdsWizz company. 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In this episode, Cheryl & Jamie discuss:Jamie’s challenging diagnosis journeyThe difference between her pre-psoriatic arthritis pregnancy and parenting experience and her experience being pregnant with psoriatic arthritis, including a discussion of medicationsThe difficulties of being a young person with rheumatic diseaseThe challenges of family planning with rheumatic disease: whether to have another child or not?What it’s like to live with anxiety along with rheumatic diseaseBalancing gratitude and griefLearning to overcome “mom guilt”Our children need us to be present not perfectSpeaker bios:Jamie lives in Gloucestershire, England, with her husband and their two children; Harper aged 4 and Kit who is almost 5 months. She was diagnosed with psoriatic arthritis in early 2019 and is still in the process of “learning” her condition. She is a freelance writer and self proclaimed coffee addict who is passionate about combining traditional and holistic approaches to find the best combination to manage her chronic illness.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 mentioned in the episode:American College of Rheumatology clinical guidelines for pregnancy with rheumatic diseaseMamas Facing Forward - websiteBooks for children to learn about parents with a chronic illnessSocial media accounts: Instagram  https://www.instagram.com/MamasForward/Versus Arthritis websiteFooled by Randomness bookJamie’s SocialsInstagram @mama.bear.squaresCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseCheryl’s Arthritis Life social media pages:Cheryl on InstagramCheryl’s website: Arthritis LifeCheryl’s Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Cheryl’s free Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportMedical disclaimer:All content found on the 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 – Jamie’s introduction and her initial health issues: consistent pain in her fingers, spine, and neck after her first child was around two years old. 05:00 – Jamie struggles to get treated seriously by doctors. She’s diagnosed with psoriatic arthritis after originally her doctors said she was “too young” for it. 5:35 - She and Cheryl discuss their similar diagnosis journeys with medical gaslighting, how both of them had to have their parents advocate for them and spend money on additional doctors before they got their diagnoses. 7:30 - Discussion of anxiety as a result of untreated / undiagnosed chronic illness. Jamie & Cheryl discuss their experiences getting therapy for anxiety and coming to terms with it.9:45 – Jamie’s first pregnancy without psoriatic arthritis, as compared to her second pregnancy with it. Discussion about medication decisions and how difficult it was to decide whether to have another child or not.12:08 - What was it like to be pregnant with psoriatic arthritis during COVID19 pandemic (in 2020)? Includes a discussion about the pregnancy-induced remission she experienced. 14:30 Jamie discusses her experiences breastfeeding and difficult postpartum medication decisions. Cheryl and Jamie discuss how complicated medical decisions are in the context of a family system, not just what’s “best” for the baby. 16:30 - Jamie discusses comfortable ways to hold the baby during breastfeeding and the ways in which aspects of the newborn process are easier due to lockdown.18:00 - Jamie discusses her mixed feelings about using adaptive aids or gadgets in the home, as a young person with arthritis.20:00 - Balancing gratitude and grief as a mom with a disability.22:00 - The importance of learning how to adapt continuously, rather than seeing your chronic illness as having an “end point.” 23:15 - How Jamie’s flare up affects her ability to parent her “big kid” (her 4 year old) and her feelings of mom guilt, complicated by the fact that she’s experienced parenting her child prior to her diagnosis.26:10 - Cheryl and Jamie discuss how difficult it can be to decide whether to have additional children when you have a rheumatic disease, and how to spread out the space between your children. 34:45 - Cheryl parenting mantra: “My son needs me to be present, not perfect.”36:00 - Learning to enjoy the simple pleasures with your children.39:00 - How Cheryl & Jamie explain their conditions to their children and how it’s helped their children develop empathy.42:00 - Coping with feelings of “unfairness” when you get diagnosed with an autoimmune disease when you had previously been healthy and had healthy behaviors.45:00 - Fears of passing your autoimmune condition on to your children. 47:45 - Mamas Facing Forward - resource for moms and moms to be living with chronic illness. Includes books for children about parents that have disabilities.50:00 - The importance of having clear expectations to your partner and delegating if possible when raising children.55:00 - The role social media plays in Jamie & Cheryl’s lives; a blessing and a curse. It can be confusing as the diseases differ drastically between people.58:00 - What the word “progressive” meant to Jamie when diagnosed and how that has changed over time with the modern treatment options and medication. 1:01:00 - Cheryl’s experience when newly diagnosed, having faith in the medications.1:05:00 - The importance of considering how representative the stories that you’re looking at on social media are. When things are going well, people aren’t on the disease-specific social media groups. 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 Cheryl explains how Acceptance and Commitment Therapy (ACT) has been key for her to build a life she loves despite chronic illnesses. She also shares how she’s found a balance between ways to minimize pain and ways to live a good life despite pain. Additionally she urges listeners to ask, “Can I live a good life despite rheumatoid arthritis?” rather than “Can I live a normal life with rheumatoid arthritis?” 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 she say) FUN patient education and self-management resources. Links to things discussed in the podcast episode:Rheum to THRIVE membership - sign up today (registration closes on March 31)!Articles mentioned in this episode:Summary of research article: “Rheumatoid arthritis: 80% of sufferers can now live a “normal” lifeJAMA article: Diagnosis and Management of Rheumatoid Arthritis: A ReviewMarcel the Shell with Shoes on (“Compared to what?”)Russ Harris: The Happiness TrapAcceptance and Commitment Therapy info page8 Lessons Learned Postpartum - my blog post from 201410 years with RA - what’s the impact? - blog post from 2013Cheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseCheryl’s Arthritis Life social media pages:Cheryl on InstagramCheryl’s website: Arthritis LifeCheryl’s Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Free Facebook group to discuss the podcast and connect further with others: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportMedical 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.Show notes:1:20 - Why I chose this topic for today’s episode.3:00 - Does “normal” mean lack of severe joint damage? Research study showed 80% of people with rheumatoid arthritis can live a “normal life.”5:00 - What is your definition of normal - compared to what?7:00 Is a “normal life” the exact life I imagined for myself pre-diagnosis?7:55 - Is a “normal life” one where I can experience things that are important and achieve meaningful goals and life experiences?10:05 - Can you live a normal life with RA? It depends on what your definition is, and what your hopes and dreams are underneath your concept of normal.10:35:  You may not get the normal you wanted or expected, but can you find a NEW normal you can learn to love?12:40 - There is no guarantee for anyone of a pain free life. Confronting that reality head on can free us from pressure and energy to try to achieve a perfectly pain free life, which is impossible for most.15:00 - How my therapists taught me the futility of trying to avoid pain and anxiety.15:45: “The hope is that you can still live a good life despite inevitable pain and suffering, that’s the hope, the hope isn’t that you can avoid it, because avoidance is not a long term sustainable strategy .”16:00 - We can and should gather evidence based tools to manage and minimize our pain and function on a daily basis, however: “If we ONLY focus on the tools to MINIMIZE pain, the problem can be the expectation or belief that we attach to the idea that if we JUST have the right tools we are going to 100% be guaranteed to avoid all pain, and I do wish that were true, but realistically it’s just not true for most people because, pain, physical or mental, is an inevitable part of the human experience.”17:15 - Difference between pain and suffering.17:55 - I was dragged “kicking and screaming” into acceptance. If you are confused, you’re not alone!18:45: True acceptance of the PRESENT moment is completely different than giving up or resignation.20:10 - When we’ve done everything we can to reduce pain, instead of struggling with that, we can focus on: what can we still do in the present moment?  What can I still DO that ’s important or valuable to me, DESPITE the pain? I eventually learned to let go of the illusion that if I just do the RIGHT THING I could ALWAYS avoid pain, and once I let go, I was  set free.21:30 - Balancing act between plan A (using tools to minimize symptoms) and plan B (tools to “workaround” symptoms and function despite them).22:20 - We spend a lot of time running away from pain and running away from our disease, but what if we spent more time running TOWARDS things we can still do that are valuable?23:05 - What I  dislike about a “normal” life being defined as one without disease -  feels ableist to me24:15 - My old optimism: if I just find the right solution my pain will go away, RA will have no affect on my life. New optimism: me and people with it can still live rich, meaningful lives DESPITE discomfort.27:15 - My new mission: finding a balance between controlling symptoms/minimizing symptoms *and* focusing on maximizing our quality of life despite it.27:30 - Why I developed Rheum to THRIVE membership community and what it stands for.28:45 - So many people get stuck in this mentality that they have to WAIT until their symptoms are fully controlled before attempting to thrive or live a full life, and I really encourage you to see what is still possible in your life. What can you still do and enjoy and accomplish despite your condition?29:25: Can you live a normal life with RA? Depends on your definition of normal!29:45 - The question I like to ask more than “can I live a normal life with RA:” Can I live a GOOD life with RA? Can I be of service to others, can I leave the world better when I leave it than when I found it?  I think YES. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.