Arthritis Life

Effie shares many anecdotes and nuggets of wisdom about how she’s learned to advocate for herself over fifteen years of living with rheumatoid arthritis. She also shares examples of finding a good fit with a provider, and how to get involved in legislative advocacy on a national scale.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.Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others develop tools to navigate physical, emotional and social challenges so that they can live a full life *despite* arthritis. 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. Links discussed in this episode:Effie’s BlogEffie’s InstagramEffie’s TwitterEffie’s Rising Above RA RAra Shop Designs (Merch): Effie’s Youtube Channel: RA and MyselfAdvocacy resources: Arthritis Foundation advocacy resources, American College of Rheumatology, ResistBot, WEGO health conferenceFree Handout: Cheryl’s Master Checklist for Managing RACheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportThis episode is brought to you by the Beginner's Guide to Life with Rheumatoid Arthritis (new name coming soon!), an intensive online education and support program Cheryl created to empower people with the tools to confidently manage their social, emotional and physical life with rheumatoid arthritis.Medical 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.Detailed breakdown of show:01:30 – Effie’s Diagnosis Story.03:30 – Effie’s advice for students with rheumatoid arthritis.06:06 – Examples of when Effie has had to advocate for herself and be actively involved in her care during medical appointments.08:40 – Examples of Effie advocating for her needs when prescription errors occurred. 13:15 - Effie’s experiences with getting second opinions and finding a good fit with a doctor.15:30 - General advice for patients to learn to advocate for themselves with medical professionals.17:14 - How Effie & Cheryl learned not to downplay symptoms, and how they confront fears around changing medications.21:00 – Effie’s advice for formal legislative advocacy at your state or national capitol, and why personal stories are so important.27:21 – How Effie has advocated for invisible illnesses, and Effie’s experience being accused of “faking” her disability (including someone calling the cops on her for using the disability placard).31:00 – What Effie wishes healthcare providers knew or did better.35:00 - The impotence of getting medical guidance from the doctor rather than the internet sometimes.36:05 – What Effie wishes the general public knew about rheumatoid arthritis.38:00 - Effie’s final words to anyone newly diagnosed: take advantage of the community. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Kristen delves deep into the science behind behavior analysis and shares how she has used data to help her track her symptoms such as brain fog and fatigue. She also shares how mindfulness and acceptance based therapies can help people living with chronic illnesses achieve a better quality of life.Kristen also helps other chronic illness warriors apply the principles of behavior analysis to their unique health and lifestyle management goals through 1:1 behavioral coaching. In addition to being a chronic illness warrior, Kristen is also pursuing a PhD in Cognitive and Behavioral Sciences, she is married to her high school sweetheart, and loves hiking and being outdoors with her partner and three dogs. 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 successfully 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.Links discussed in this episode:Kristen’s Website: Warriors Move MountainsKristen’s InstagramThe Happiness Trap: Russ Harris (explains Acceptance and Commitment Therapy)Cheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportArthritis Life Instagram PageFree Handout: Cheryl’s Master Checklist for Managing RAThis episode is brought to you by the Beginner's Guide to Life with Rheumatoid Arthritis, an intensive online education and support program Cheryl created to empower people with the tools to confidently manage their social, emotional and physical life with rheumatoid arthritis.Medical 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.Time breakdown: 01:30 – Introduction03:00 – Kristen’s diagnosis story for Sjogren’s and RA5:00 - What is Applied Behavior Analysis (ABA) and who are Board Certified Behavior Analysts (BCBAs)? 6:30 - Explanation of how ABA can be applied across diagnoses 8:45 – Explaining controversy around ABA for neurodiverse populations12:20  – Examples as Kristen utilizes Behavior Analysis as a patient to track symptoms: CBD tincture for fatigue and brain fog15:20 - How tracking data can be a powerful tool to combat overwhelm19:17 - Importance of rest and learning how to rest without guilt21:40 - How thoughts, behaviors and the environment influence each other 25:20 - How Kristen balances being a PhD student with her mental health 27:45: Kristen’s advice for setting boundaries and learn how to say no29:00 - Cheryl’s experiences having difficulty saying “no” to things when her health is going well and Kristen’s 80% rule31:20 - Kristen’s experience with going to therapy and how she manages her stress through mindfulness and ACT 36:00 - What does Kristen’s mindfulness practice look like on an average day39:00 - How Cheryl & Kristen cope with uncertainty and find acceptance with their conditions. 43:10 - Behavior Analysis Coaching with Chronic Illness: how does it work?46:00 - Balancing act between accepting present and tracking data for future48:00 - Life Coaching vs Certified Health Coaching versus Board Certified Behavior Analysis51:00 - Final thoughts Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Vanessa Cameron and Cheryl Crow delve deep into Vanessa's rheumatoid arthritis journey, which includes significant work she's done on examining the mind-body connection and finding balance in her life through daily mindfulness, EFT and other practices.Cameron discovered her passion for hacking her mind and body amid a debilitating bout with Rheumatoid Arthritis. After learning about the emerging science of Self-Compassion and the benefits of meditation, EFT (tapping) and NLP (neuro-linguistic programming) she began incorporating daily science-backed practices that boosted her health and happiness. Her passion led her to start and earn master level practitioner certification to teach EFT and NLP. Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. She is passionately dedicated to helping others with rheumatoid arthritis figure out how to successfully navigate daily challenges so they can live a life they love despite health 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. This interview was conducted in December 2019.Get More Support at: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!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.Links discussed in this episode:Vanessa’s Website: www.isparkdaily.comVanessa’s Instagram @isparkdailyIntegrated Rheumatologist - Dr. Mir https://www.nyir.com/“ACEs” study (Adverse Childhood Events)8 week self compassion meditation class at StanfordTara Brach - The RAIN of Self-Compassion ACT - Acceptance and Commitment TherapyCheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportFree Handout: Cheryl’s Master Checklist for Managing RAThis episode is brought to you by the Beginner's Guide to Life with Rheumatoid Arthritis, an intensive 4 week online education and support program Cheryl created to empower people with the tools to confidently manage their social, emotional and physical life with rheumatoid arthritis.Medical disclaimerDetailed episode breakdown:3:00 Beginning signs of RA4:30 - Massive flare up, feeling “stuck” in life overall7:10 - Vanessa experiments with dietary changes and finds a diet that helps her inflammation11:00 - Massive flare up leads to confusion.15:00 - How she found a good fit with her doctor19:00 - How a trusting relationship with Dr. Mir helped Vanessa accept western medications.21:33 - Vanessa’s low point after contacting the flu.22:00 - Recognizing she needs to address emotional scars from her past.26:30- How Vanessa used Emotional Freedom Technique (EFT) - Tapping + Journaling to work through her emotional scars (such as being told she’s “too emotional”), and learning to take an energy inventory31:30 - How a daily self-compassion meditation course helped.33:10 - Summary of the lifestyle changes she made to manage her wellness on a daily basis38:14 - How RA struggle now seems like a blessing in disguise39:20 - How joining a Buddhist community sparked resilience.42:19 - Vanessa’s advice to newly diagnosed patients44:17 - How RA affected her experiences in the workplace, how she learned to advocate44:40 - How she explains RA to people who don’t know anything about it46:00 - How both Cheryl & Vanessa learned to say no!49:50 - Lifestyle changes, including saying no and managing energy51:00- Vanessa worked with an autoimmune health coach.52:20 - Learning to see Pain as a messenger53:07 - How EFT helped Vanessa get to the root of her emotions54:30 - Cheryl talks about how ACT helped her manage difficult emotions.56:00 - Discussion of Tara Brach’s “RAIN of self-compassion”59:50   - Concluding thoughts about how Cheryl & Vanessa came to terms with being comfortable sharing their RA and emotional stories. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Cheryl & Bronnie are both occupational therapists who live with chronically painful conditions. In this episode, Bronnie shares her unique perspective on how one pursue a full life *despite* pain, rather than seeking solely to eliminate pain. This episode is a must listen for both patients and practitioners.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.Get More Support: Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now!Speaker Bios:Dr. Bronnie Lennox Thompson is a pain specialist, clinical instructor, and occupational therapist who lives with chronic pain from fibromyalgia.  She has a passion to help people experiencing chronic health problems achieve their potential. She has worked for 20 years in the field of chronic pain management, helping people develop “self management” skills. Bronnie completed her Masters in Psychology in 1999, and recently earned her Doctorate in Psychology in the mid 2010s. Cheryl Crow has lived with rheumatoid arthritis for seventeen years and has been an occupational therapist for seven. After originally working in pediatrics, Cheryl formed the online education and empowerment company Arthritis Life to fill a need for accessible, engaging patient education and self-management resources. This interview was conducted on May 17, 2020.For full episode links plus a transcript:Go to the show page on the Arthritis Life Website here. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

This episode including tips for to cope with the initial diagnosis, how to best educate yourself about your condition, ways to utilize social support without getting overwhelmed,  how to best collaborate with your provider and make treatment decisions, and finally how to take care of your mind and manage stress. Episode breakdown:1:10 - Episode Introduction2:08 - Analogy for those newly diagnosed - a tourist in an unplanned for land4:08 - Advice for the initial adjustment period6:30 - Tips for educating yourself about your condition10:00 - How to best utilize social support, including social media18:15 - How to best interact with your providers and medical team.20:15 - How to choose the best treatment ideas for you31:44 - Tips for managing stress and taking care of your mind40:00 - Concluding thoughtsMedical 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 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! Links discussed in this episode:"Welcome to Holland" essay by Emily Perl KingsleyFree handout: 6 Things Everyone with Arthritis Should KnowFree handout: Master RA Management ChecklistFree Facebook Group: Arthritis Life Podcast, Practical Tips and Positive, Realistic SupportA great letter to newly diagnosed patient from my friend and fellow Chronic Illness advocate Chronic Eileen: The Letter I Wish I sent to Myself the Day I was Diagnosed with Rheumatoid ArthritisThank you so much to those who contributed their words of wisdom!From Instagram: @hopeamidthepain, @Rheumatoiddiaries, @TheNarcissistGames, @Sje70, @deepa.venkatraman, @drmaggiecadet, @A.shrummer, @Jbayze2018, @worldofot, @boop911, @Kimesue, @Mommywithmctd, @ra.and.me , @Paulaburza, @_chronically_happy_, @warriorsmovemountains, @graceandable_official From Facebook: Monica Thomas, Laura Muller, Christopher Vance. 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:The following is a breakdown of the main topics we discussed - scroll to the end to see hyperlinks for resources mentioned in this episode! As a reminder: this episode was originally recorded in 2019.01:35 - Claire diagnosis journey for rheumatoid arthritis: difficulty being believed by providers through her official diagnosis and her journey towards accepting it10:30 Claire’s pregnancy and childbirth experience14:20 - Claires postpartum experience with RA coming back slowly16:20 - How Claire parents a Toddler with Rheumatoid Arthritis18:15 Claire’s advice for people with RA who might want to have a child20:20 - How to Manage Stress and Anxiety with chronic illness, including tips for finding a good fit with a provider (26:40: Claire’s advice for newly diagnosed patients30:10: What Claire wishes doctors did better31:26: Claire’s tips for a good patient-provider relationship and tips for advocating for yourself35:36: The Difference between living with an invisible illness and living with a visible one when Claire had to wear a splint!38:55: How RA affected Claire’s choice of work, and her employment41:42: How RA affected Claire’s relationship with her husband44:00 - Fatigue and RA45:44 – How RA affects friendships and relationships in adulthoodGet More Support at: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!External resources mentioned in this episode or relevant to it:Suzie Edward May “Arthritis Pregnancy and the Path to Parenthood”Mother to Baby - website for evidence based information for pregnancy and medicationsArthritis Life Podcast, Practical Tips & Support - Cheryl's Facebook groupFree download from Cheryl: my Master RA ChecklistFree download: the 6 Things Everyone with Arthritis Should KnowMEDICAL 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. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. 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 GlanceCheryl (rheumatoid arthritis patient and occupational therapist) and rheumatologist Dr. Percy Balderia discuss:1:00-2:00: -  What is Rheumatology?2:00 -  Why did Dr. Balderia choose to become a Rheumatologist?04:50- Day in the life of a Rheumatologist06:45 - How to build a good relationship with your provider & prepare for appointments11:16- What should patients know about Rheumatology?13:07- Meeting the mental health needs of people with chronic illnesses14:02- How to pick the best treatment plan & utilize supports available to you!This interview was originally conducted in April 2019.Episode is brought to you by: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! Additional links relevant to this episode:Arthritis Life Podcast, Practical Tips & Support - Cheryl's Facebook groupFree download from Cheryl: my Master RA ChecklistFree download: the 6 Things Everyone with Arthritis Should KnowDr. Percy Balderia is a rheumatologist who sees patients at The Polyclinic Madison Center and The Polyclinic Downtown in Seattle, Washington. He has a special interest in rheumatoid arthritis. He trained at the University of Washington and was awarded The Arthritis Foundation fellowship.Thank you to our podcast interns, Sarieni & Laura from The Modern OTs podcast, for your help in editing this episode!MEDICAL DISCLAIMER:All content found on the Arthritis Life Youtube Channel was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Please seek the advice of a physician or other appropriate healthcare provider before putting information from this channel to use. Links to educational content not created by Cheryl Crow of Arthritis Life are taken at your own risk. Reliance on any information provided by Arthritis Life is solely at your own risk. 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 GlanceShe and Cheryl discuss their best advice for newly diagnosed patients, explore how fatigue can be more debilitating than pain, highlight the importance of mental health treatment for chronic conditions, and dig into the impact of rheumatoid disease on everyday life. Sarah's experience designing her own custom wedding day splint (due to not wanting to wear the typical ugly splints available in the current market) led her to form a start-up called Grace and Able, where she's developing more comfortable and aesthetically pleasing wrist braces. She also runs the Women with Rheumatoid Disease Facebook community. Here's the show breakdown:01:25 - Sarah's diagnosis story and brief medical history08:30 - Highlights and lowlights from Sarah's experience with medical providers23:34 - Sarah's advice for newly diagnosed patients (includes a discussion on social media)38:00 - How rheumatoid disease has affected Sarah's experiences at work42:27 - The effects rheumatoid disease has had on Sarah's friendships and romantic relationships47:11 - The origin of Sarah's custom wedding day splint, which led her to form Grace & Able.51:00 - How chronic illness has affected Sarah and Cheryl's mental health.59:54 - Why fatigue is the hardest part of coping with RA (even more so than pain).1:07:20 - What to do when there are no more treatment options - how to have this discussion with your doctor and care team.1:11:41 - Sarah's frustrations with day to day living, and how she's learned much of what she's needed to cope with pain and daily living challenges from other patients and not health professionals.1:18:00 - The three MOST important parts of Sarah's current management of her condition.Additional links relevant to this episode:Arthritis Life Podcast, Practical Tips & Support - Cheryl's Facebook groupFree download from Cheryl: my Master RA ChecklistFree download: the 6 Things Everyone with Arthritis Should KnowGet more support at: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!MEDICAL DISCLAIMER:All content found on this podcast was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read or heard on this 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 is brought to you by 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! Learn more at: Cheryl's full diagnosis story video (20 minutes)Arthritis Life Podcast, Practical Tips & Support - Cheryl's Facebook groupFree download from Cheryl: my Master RA ChecklistFree download: the 6 Things Everyone with Arthritis Should KnowArthritis Life Youtube Channel, where you can find life hack demonstrations, patient interviews, provider advice and more.Cheryl's Instagram account where she regularly shares stories, infographics and life hacks.Arthritis Life Facebook PageArthritis Life WebsiteCheryl's Twitter Account Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.