Arthritis Life – Details, episodes & analysis

Elena also shares her favorite resources for living well with arthritis, including supportive footwear brands, arthritis gadgets, and inspirational books. Shes hares practical tips like finding the right shoes to support your joints, using dictation tools to reduce hand strain, and the importance of accepting that some pain may persist while still being able to live a fulfilling life. 

Throughout the conversation, Dr Elena and Cheryl emphasize the value of prioritizing what's important and showing up for family, work, and health—even when symptoms make things challenging. If you're newly diagnosed with RA, this episode offers comforting, actionable advice and a reminder that you're not alone in navigating this journey.

DISCLAIMER FOR THIS EPISODE:

The views expressed are those of the author and do not reflect the official policy or position of the US Air Force, Department of Defense or the US Government*

Personal Challenges and Advice: Elena shares her experience with managing rheumatoid arthritis and vasculitis and discusses practical tips for newly diagnosed individuals.

Useful Products and Tools: Cheryl and Elena discuss favorite footwear brands and how they impact daily comfort and highlight dictation software as a game-changer for writing tasks.

Living Well with Rheumatoid Arthritis: Elena emphasizes focusing on doing what's most important, even with some discomfort, to achieve a fulfilling life.

Inspirational Mantras: Elena shares her favorite motivational sayings and discusses how this perspective helps her manage daily challenges.

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.

Dr. Ma advises people with rheumatoid arthritis to start small, listen to their body, and use her "START" guide to gradually build an active routine that feels right for you. She also explains how the START guide is a useful tool for clinicians like physiotherapists and occupational therapists to support patients in developing sustainable strength training routines.

Dr. Ma  also shares her favorite mantra, "control the controllables and enjoy the enjoyables," which is a great reminder to focus on what you can manage and find joy in the little things. Plus, Cheryl and Dr. Ma dive into how having a supportive community—whether it’s big or just a few people—can make a huge difference in thriving with RA! 

Episode Themes:

Physical Activity with RA: Dr. Ma shares how you should listen to your body’s needs and pace yourself to avoid overexertion. Physical activity is more than exercise; it’s about reducing sedentary time and increasing daily activity.

Kinesiologist’s Approach to Movement: Using the 24-Hour Movement Guidelines, Dr. Ma talks about the balance of physical activity, sleep, and reducing sedentary behavior, all while accounting for the challenges posed by RA.

The Importance of Community: Cheryl and Dr. Ma discuss how community is key for thriving with RA, but it looks different for everyone. Whether it’s a large group, one-on-one support, or reaching out to a healthcare professional, connection makes a difference.

Inspirational Mantra: Dr. Ma shares her favorite saying: "Control the controllables and enjoy the enjoyables." Focus on what you can manage and find joy in the present moment.

Empowering Mindset: Cheryl and Dr. Ma discuss how RA management is about becoming your own scientist and finding what works best for you.

Mental Shift on Exercise: Cheryl and Dr. Ma explore the idea of reframing exercise as something empowering, rather than just a necessity, and how staying active can contribute to feeling more in control of your health.

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.

Go to the episode page on the Arthritis Life Website.

What’s it like to suddenly go bald at age 22? In this episode, Cheryl interviews Colleen Kydd, who speaks candidly about living with autoimmune alopecia.  She shares how she went from covering her baldness with wigs to confidently, unapologetically embracing her identity as a “bald girl in a big world!” Colleen shares how she managed her alopecia in the corporate world, dating life, world travels and new role as an entrepreneur.

Throughout the episode, Cheryl and Colleen discuss acceptance, self compassion, and the crucial importance of connecting with others when we’re struggling.  Cheryl and Colleen reflect on the transformative power of  storytelling, and the importance of pursuing a meaningful life amidst the challenges of chronic illness.

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

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now!

Go to the episode page on the Arthritis Life website for full show notes plus a full transcript, video and more!

Episode at a glance:

• Karol’s experience getting diagnosed with JIA at age 13 and being angry, terrified and grumpy about it
• The importance of disability representation beyond the cliche “inspirational” story
• How Karol learned the importance of partnership with a doctor and taking an active role in her care in her 20s
• Why 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 ableism
• Why Karol wishes she had listened to her occupational therapists earlier, and why occupational therapy is so important for people with rheumatic diseases
• Excerpts 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 pride

Speaker 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/

• 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)

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

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

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.

• 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 article
  • Link to my webinar about stress management
  • What is ACT - acceptance and commitment therapy: Information site
  • The Happiness Trap - Book and online program from Dr. Russ Harris - explains Acceptance and Commitment Therapy
  • Apps 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 & React
  • Recommended episode: 8 Things everyone who loves someone with arthritis should know
• Free Facebook group: Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook group
• Arthritis Life Program Links
  • 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 condition.
• Cheryl’s Arthritis Life social media pages:
  • Cheryl &  Arthritis Life on Instagram
  • Cheryl’s website: Arthritis Life
  • Arthritis Life Tiktok: @ArthritisLife
  • Arthritis Life Facebook Page
  • Cheryl’s Twitter: @realcc
  • Arthritis Life Youtube channel

This episode includes discussions about:

• How to decide whether or not to have children while living with a chronic illness
• Tips for comfortable sex with chronic pain
• Frequently Asked Questions about pregnancy with rheumatoid arthritis, including how to find out which medications are safe
• Cheryl and Mariah’s experiences with childbirth and C-sections
• How 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 breastfeeding
  • Past episodes of Arthritis Life pod
  • Mariah’s book review from rheumatology nurse practitioner Iris Zink Sex – Interrupted: Igniting Intimacy While Living With Illness or Disability
  • HealtheVoices - patient advocacy conference Mariah attended 
• Mariah’s links:
  • Twitter & Instagram: @mamasforward
  • Facebook page: https://www.facebook.com/mamasforward
  • Facebook group: https://www.facebook.com/groups/mamasfacingforward
• Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook group
• Join 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/

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.com

Emma  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 @gittie

Melissa 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=subscriber

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. 

You can find Cheryl at:

• Cheryl &  Arthritis Life on Instagram
• Cheryl’s website: Arthritis Life
• Arthritis Life Tiktok: @ArthritisLife 
• Arthritis Life Facebook Page
• Cheryl’s Twitter: @realcc 
• Arthritis Life Youtube channel

Unity 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 YouTube
• Unity Schmidt: instagram.com/unityschmidt
• www.HealingwithUnity.com

Mary (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.shrummer

Effie 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 Blog

• Effie’s Instagram
• Effie’s Twitter
• Effie’s Rising Above RA RAra Shop Designs (Merch): 
• Effie’s Youtube Channel: RA and Myself

This 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 group
• Cheryl’s Arthritis Life freebies:
  • Free Handout: Cheryl’s Master Checklist for Managing RA
  • Free Training: Arthritis Life Hack Crash Course
• Arthritis Life Program Links
  • Join 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 - Croon
• 33:40 - Gittel - additional biographical info
• 34:40 - Melissa - “Brain Fog” poem
• 37:10 - Mimi Cross (Inflammation Vacation)
• 38:15 - Ashley S “You Say You’ll Never but I do.”
• 41:25 - Gittel - Second poem
• 43:00 - Effie - reading from Brenda Klean-Sasser poem (2012) “100 Shades of Blue”

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 Brown
• Exploration 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 microaggressions

Speaker 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/Chronicallybrown
  • IG: https://www.instagram.com/chronicallybrown/
  • Twitter: @chronicbrown  https://twitter.com/chronicbrown
  • Website: 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 group
• Cheryl’s Arthritis Life freebies:
  • Free Handout: Cheryl’s Master Checklist for Managing RA
  • Free Training: Arthritis Life Hack Crash Course
• Arthritis Life Program Links
  • Join 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 Instagram
  • Cheryl’s website: Arthritis Life
  • Arthritis Life Tiktok: @ArthritisLife 
  • Arthritis Life Facebook Page
  • Cheryl’s Twitter: @realcc 
  • Arthritis Life Youtube channel

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 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.

Topics include:

• Joel shares what it was like to grow up with juvenile idiopathic arthritis
• Joel 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 pain
• Cheryl & Joel share tips and exercises for mental wellbeing despite chronic illness

Speaker 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=subscriber
• Books and resources
  • The Happiness Trap book explaining Acceptance and Commitment Therapy concepts
  • Versus Arthritis nonprofit with helpful resources
• Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook group
• Cheryl’s Arthritis Life freebies:
  • Free Handout: Cheryl’s Master Checklist for Managing RA
  • Free Training: Arthritis Life Hack Crash Course
• Arthritis Life Program Links
  • Join 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 Instagram
  • Cheryl’s website: Arthritis Life
  • Arthritis Life Tiktok: @ArthritisLife 
  • Arthritis Life Facebook Page
  • Cheryl’s Twitter: @realcc 
  • Arthritis Life Youtube channel

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:

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.

Episode at a glance:

• Renee’s diagnosis journey after a decade of mystery symptoms
• How rheumatoid arthritis has affected Renee’s parenting and homeschooling
• Renee’s Christian faith helps her cope with challenging times
• Cheryl and Renee share their different treatment choices (western medicine and natural only approaches) and how important it is to respect each other despite different choices
• How Renee adopts an anti-inflammatory lifestyle
• The dark side of focusing on wellness and diet: Renee shares about orthorexia, an unhealthy obsession with healthy food
• Why Renee started her Rheumatoid Arthritis Mamas Sisterhood Facebook group

Speaker 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 episode
  • https://www.nationaleatingdisorders.org/learn/by-eating-disorder/other/orthorexia
  • ACR guidelines
  • “Food freedom” Elizabeth Dahl - woman of wellness -
• Renee links
  • Instagram: 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 group
• Cheryl’s Arthritis Life freebies:
  • Free Handout: Cheryl’s Master Checklist for Managing RA
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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.