Arthritis Life

Speaker bios:Corinne McLees is passionate about helping individuals maximize the function of their upper extremities, as she believes the hands are imperative to doing the things we love most. She graduated from VCU's Master of Science in Occupational Therapy in 2016 and immediately began working in VCU Heath's hand therapy clinic. Corinne and her OT husband launched My Virtual OT - a 100% virtual occupational therapy practice - in order to safely serve clients amidst COVID-19. She has two small children and one on the way, and she and her husband have greatly enjoyed launching this business together.Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. She helps others with rheumatoid arthritis determine 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. 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 to things discussed in this episode:What is Occupational Therapy?Homonculus - sensory and motorMy Virtual OT website  My Virtual OT Youtube Channel  Corinne’s Virtual OT InstagramFree 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 Rheumatoid Arthritis Roadmap, 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.Episode breakdown:01:00 – Corinne’s explanation of what Occupational Therapy is05:00 – Educating clients about hand therapy07:00 – The brain interprets our hands as disproportionately important given their size; discussion of the homonculus 10:00 – How pain affects daily activities12:42 – Principles of joint protect while living with chronic hand pain13:00 – How posture alignment awareness protects joints19:25 – Overuse of exercises, fatigue, and flares 25:05 – How to better understand human behavior to support behavior change30:15- Corinne explains what happens during a virtual occupational therapy visit for patients with RA33:00 – The importance of distinguishing between different tyes of pain41:10 – How support groups can help keep you accountable 45:15-  Additional OT treatments: heat and cold, splinting and joint protection

In this episode, Paulina shares her personal journey of how she discovered the benefits of yoga after her rheumatoid arthritis diagnosis. She explains how it can help people manage stress and feel a better sense of peace about themselves and their lives. Paulina also busts some of the top myths about yoga in this episode.Paulina Burzynska has been a 𝑅ℎ𝑒𝑢𝑚𝑎𝑡𝑜𝑖𝑑 𝐴𝑟𝑡ℎ𝑟𝑖𝑡𝑖𝑠 𝑊𝑎𝑟𝑟𝑖𝑜𝑟 since the age of 18. She has lived with RA for five years, and as a teacher she is dedicated to providing safe, mindful classes for everyone helping them experience the benefits of yoga. Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her 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. Links Discussed in this episode:Paulina’s Instagram &  Chronically Happy InstagramYoga school Paulina went to: Zazyoga Flexibility versus hypermobility articleFree 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 Rheumatoid Arthritis Roadmap, a comprehensive 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. Episode breakdown:01:00 - How Paulina was introduced to Yoga while living with rheumatoid arthritis (RA)05:00 – You don’t necessarily have to modify your yoga routine07:00 – How yoga can work with your body’s central nervous system12:24 – Practicing yoga involves breath work to help with stress and getting your mind and body into a healing state15:00 – The mental aspect of yoga brings mindfulness17:56 – Cheryl shares her experience taking Pauline yoga class22:00- Yoga is not about the intensity but about the healing aspect 26:16 – How people with RA can modify yoga to help work around painful areas32:00 – Listen to your intuition about your body35:00 – Top myths around yoga - “I’m Not flexible enough to do yoga”  39:00 – You don’t need special equipment to practice yoga  42:00 – Your muscle fibers through physical activity will get weaker or stronger45:00 – Certain techniques in yoga can help how your body reacts to stressful situations48:30 – Insecurities that might prevent people from from trying yoga52:00 – How yoga can support you

Cheryl explains how rheumatoid arthritis affects more than just joints - it affects people’s whole bodies, and whole lives!She also explores how she learned to tolerate gray areas rather than seeking black and white answers, and how mindfulness and acceptance helped her with the mental side of life with chronic illness.This episode also includes a discussion about medical gaslighting, and how Cheryl learned to give herself permission to grieve her diagnosis.It concludes with a discussion about how managing one’s rheumatoid arthritis is like a full time job. Episode breakdown:1:00 - #1 - Rheumatoid Arthritis affects more than just joints.5:00 - #2 - RA affects your social life in difficult ways (such as misconceptions) and positive ways (such as connections with a chronic illness community)9:30 - Tips for using websites and social in productive ways12:40: #3 - Gray areas are the norm for autoimmune disease16:09: #4 - Living with chronic illness will affect your mental health.17:49  Cheryl’s experience with allowing herself to grieve her health19:13 - Medical gaslighting.22:14 - #5 -  Managing RA is a job but you can learn how to do it!Medical disclaimer:All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.Episode 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. Links discussed in this episode:Free training - overcome overwhelm through online health literacy (click “Unit 1” and “Lesson 2” on this page)Note: In 2021-23 Cheryl updated the "Rheumatoid Arthritis Roadmap" course and renamed it to "Rheum to THRIVE,' to signify that it now includes instruction on all forms of inflammatory arthritis / rheumatic disease, not just rheumatoid arthritis.Cheryl’s diagnosis story on YoutubeFree Handout: Cheryl’s Master Checklist for Managing RACheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic Support

This episode includes a deep dive into:Why Dr. Cadet chose to specialize in RheumatologyWhat unique issues rheumatology patiences of color faceWhy racial representation is important for healthcare providersDr. Cadet’s advice for rheumatology patients for how to get the most out of appointments and build a trusting relationship with your providerSpeaker bios:Dr. Magdalena “Maggie” Cadet is a well respected board certified clinical rheumatologist in New York City.  She is an Associate Attending at NYU Langone Medical Center.  She has been selected as a 2016,2017, 2018, 2019,2020 Castle Connolly Top Doctor and 2018,2019 Castle Connolly Exceptional Women in Medicine. Dr. Cadet’s interests have always focused on women’s health issues and issues relating to arthritis, autoimmune diseases, sports medicine, and motivating others to live a healthier lifestyle. 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:Dr. Cadet’s Instagram page where she educates patients and shares her journey.Dr. Cadet’s WebsiteFree 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 Rheumatoid Arthritis Roadmap, 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. Episode breakdown02:30  – How Dr. Cadet became a rheumatologist.05:16 – The importance of being persistent as a doctor.08:00 – How Dr. Maggie was able to break societal barriers.012:45 -  Challenges women doctors of color face and how they advocate for themselves.15:15 – Systemic racial disparities in healthcare among minorities.19:30 – The importance of racial representation in healthcare for women of color and minorities.24:00 - The importance of female doctor representation starting in childhood.27:15– What Dr. Maggie wants rheumatology patients to know.32:15- Doing your own research as a rheumatology patient is a job in itself. 34:15 – The importance of being honest with your doctor about your symptoms.37:15 - Other healthcare professions that help with the management of your disease.39:20 – Advice for patients to get the most out of their appointments.43:30 – Fatigue and pain approaches for autoimmune patients.48:58 – Understanding that physicians are humans too.54:45 – Additional advice and insights for rheumatology patients.

Cristina Montoya, Registered Dietitian and Kia Peters, Nutrition Student weave together their lived experience as rheumatoid arthritis (RA) patients and nutrition experts in this episode, alongside Jenifer Tharani, a Registered Dietitian Nutritionist who specializes in anti-inflammatory eating.This episode covers:What’s the difference between a “nutritionist” and a “Registered Dietitian” and why is it important?Nutrition and diet “rabbit holes” that patients often fall down, and mistakes to avoid when seeking support for nutrition.Top myths about diet and disease management, including:Can nutrition choices cure the disease?Are dairy, red meat and nighshades bad for everyone?The psychology behind food choices and how food choices give people a sense of controlThe importance of symptom tracking and food journalingKia, Cristina and Cheryl’s lived experiences of trying different approaches to food choices and diet at different stages of their disease management.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 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:Cristina Montoya is a Colombian mama living in the land of maple syrup, beavers and hockey, Canada. She is a Registered Dietitian (RD), a member in good standing with the College of Dietitians of Ontario, Dietitians of Canada, and the Arthritis Health Professions Association (AHPA). As a patient advocate, Cristina participates in the Durham Region Sjögren's Syndrome Support Group from the Sjögren's Society of Canada as well as the Online Consumer Panel from the Arthritis Society.She is passionate about autoimmune rheumatic diseases, medicinal cannabis science, digestive health, Mediterranean diet and anti-inflammatory way of eating, Hispanic heritage foods, home cooking, gluten-free baking, and living one day at a time. Jenifer Tharani, MS RD (Registered Dietitian)Jenifer Tharani has completed master’s in human nutrition from Texas State University, San Marcos TX and training in dietetics from Emory University Hospital, Atlanta, GA. She is a member of College of Dietitians of Ontario and registered with the Commission of Dietetic Registration. She is multilingual and fluently speaks second languages like Hindi and has worked in different settings which has given her experience treating people of all ages with different conditions. Jenifer believes that eating healthy does not have to be boring, time consuming or expensive. She is extremely passionate about helping you adopt an anti-inflammatory eating pattern without restrictions. She doesn’t believe in diets, instead in making small sustainable lifestyle changes to help you find a balance in your everyday life, including trying to keep your favorite foods in the mix! Jenifer’s mantra is “Give a Man a Fish, and You Feed Him for a Day. Teach a Man to Fish, and You Feed Him for a Lifetime” and so she gives you a nutrition toolbox to help manage your health condition or live a healthy and good quality life, whatever your goal may be.About Jenifer's Virtual Nutrition Coaching ServicesIn today's technologically driven world, Jenifer provides virtual nutrition coaching to help you take charge of your health from the comfort of your home. In her virtual nutrition practice, she focuses on helping clients adopt an anti-inflammatory eating pattern to help with weight loss, prevent and manage chronic illness like diabetes and autoimmune conditions like rheumatoid and osteoarthritis, fibromyalgia, lupus, psoriatic arthritis, and IBD. Kia Peters@livewellwithkia is a Nutrition Student who works with Jenifer, RD to educate other chronic illness warriors about anti-inflammatory nutrition without restriction..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. Links to things discussed in the episode:Jenifer Tharani, Registered Dietitian, “The Chronic Pain Nutritionist” on @chronicpain.nutritionist on InstagramCristina Montoya, Registered Dietitian, “The Arthritis Dietitian” @arthritisdietitian on InstagramKia Peters, MSc, Nutrition Student: @livewellwithkia on InstagramCristina’s website: The Arthritis DietitianCristina’s Facebook pageFree 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 Rheumatoid Arthritis Roadmap, 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.

Dr. Sakshi Tickoo (she/her/hers) is a Mumbai-based Occupational Therapist, Personal Counselor and Student Mentor specializing in the fields of Sexuality; Mental Health - Wellness and Rehabilitation. She has served a diverse group of people through home healthcare, telehealth, and school-based settings. She is also the founder and owner of Sex, Love, And OT and The OT Shop.Sex, Love, and OT is an inclusive and comprehensive platform educating and serving healthcare providers and clients who need tools and resources to advocate for sexual rights and liberation through education, centering pleasure, and freedom of occupational engagement in sexuality towards holistic wellness.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. Links discussed in this episode:Sakshi’s social links:Website: sexloveandot.com / the-ot-shop.myshopify.comInstagram: @sex.love.andot / @the_otshopFacebook: @SexLoveAndOT / @TheOTShopFree 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 Rheumatoid Arthritis Roadmap, your guide to living a full life with RA. It’s 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.Pie chart for time management / schedulingPromoting sexiness for disability hashtag on social media: #DisabledPeopleAreHotThe Five Love Languages BookDr. John Gottman marriage researcher - “Four Horsemen” for marriageMedical 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.Episode breakdown:1:00 – Dr. Tickoo’s story: why she became an occupational therapist  3:25 – How Dr. Tickoo discovered the niche of sex and relationships 7:46 – How an occupational therapist can facilitate a client’s engagement in sex and relationships12:19- How to gain occupational therapy clinical knowledge of how to address sex outside of your textbooks 14:09 – The barriers for people with chronic illnesses face for sexual participation and intimacy 18:06 – Advice on how to feel sexy while living with chronic illness 22:26 -   Giving yourself permission to enjoy sex 26:15 – How sex is taboo in India and what Dr. Tickoo does to be sex positive33:45 – The difference between physical & emotional intimacy36:48 – Communication about intimacy with your partner and how to handle power dynamics 42:00 – The importance of knowing your partner’s love language 46:00– How adults have sensory regulation needs and how chronic pain affects sensory processing51:00 – When to mention that you have a chronic condition or disability when dating54:51- Tips & tricks for intimacy with your partner when you have arthritis: scheduling, connection, experimentation, positioning aids and more1:06:45 - The importance of client education about the basics of their condition1:08:45 - How to choose a good lubricant1:11:00 - Recommended toys1:13:00 - “Everything can be sexy [including aids] as long as you think it’s sexy.”1:13:55 - What is pleasure mapping and how can it help?1:17:00   - Concluding thoughts

Navigating intimate relationships while managing a chronic illness can be tricky - how and when do you disclose your disability?  How do you experiment with sexual positions without “ruining the mood?” Is it possible to communicate with your partner in a way that’s respectful and empowering?In this episode, five panelists share their best advice for *all* aspects of romantic and intimate relationships, including: Communication tips for all stages of relationships, from first dates to marriageHow to workaround fatigue that makes it hard to get “in the mood”Positions that work for wrist or hip painLubes that work for drynessWorkarounds for jaw pain during oral sexHow do disabilities or health conditions contribute to power dynamics in relationshipsThe importance of emotional connectionsThe importance of self-love and respectWhy STD prevention and protection are particularly important for people on immunosuppressive medicationsPanelists’ best advice for newly diagnosed patients who might be worried about how their condition will affect their sex life and relationships*Trigger warning - in minutes 30-40 there are descriptions of pressuring and coercion into sex without protection**This episode discusses adult topics (sex) and includes explicit language.Minute by Minute breakdown:Episode breakdown:02:00 - Introduction to panelists: Chloe, Jo, Ali, Paulina & Cheryl.3:20 - (Chloe) How juvenile arthritis affected her relationships 07:55 – (Jo) How Jo learned the importance of communication11:42 – (Ali) Learning to experiment with positions and work around fatigue16:20 - (Paulina) The importance of communication & emotional connection23:00 - (Cheryl) Reflection on power dynamics in relationships.24:25 – (Chloe) Strong emotional connections affect vaginal lubrication.25:22 – (Chloe) How jaw pain affects oral sex & workarounds, + how fatigue affects sex.33:00 – (Cheryl) The importance of STD testing for partners due to immunosuppression from meds. Experiences feeling pressured in relationships.36:00 – (Chloe) Experiences feeling pressured in relationships. 37:45 – (Jo) Tips for positions and lubricants.39:00– (Ali) Being cautious when dating, how to work around fatigue, tips for positions and communication. 43:14 - (Paulina) Your partner is not a mind reader. Tips for lubricants for sensitive skin & positions.51:00– (Ali) Best adult toys to use for arthritis.53:00- (Chloe) Communication & practicing positions 55:00 – (Cheryl) How sex is an “Activity of daily living” according to occupational therapy. Reflection on sex education now versus in the early 1990s.58:30 – (Paulina) Tips to increase sex drive and address your own pleasure.1:01:00 – (Chloe) Advice for anyone recently diagnosed.1:04:00 (Jo) – Final thoughts and advice, disclosing when you are dating online1:06:00 (Ali) – Final thoughts1:07:00 (Paulina) – Final thoughts and adviceLINKS discussed in the episodeWhere to follow panelists on Instagram: Cheryl @Arthritis_Life_Cheryl, Chloe @xchloeumplebyx & @_chronically_happy_ and on Etsy at SpoonfulOfChronic, Jo @thejosphere, Ali @Anotherdaywithra, Paulina @with.paulina and @_chronically_happy_Rheumatoid Arthritis Online course - link for the waitlist! Versus arthritis - Sex & Arthritis bookletRA and Intimacy article from Arthritis FoundationCitation: 70% do not reach orgasm (climax) through penetration alone and require clitoral stimulationVibrator recommended: Satisfyer Pro Traveler - Clitoral VibratorFree 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 Rheumatoid Arthritis Roadmap, your guide to a full life with RA. It’s an online program Cheryl created to give people 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.*For full speaker bios, see www.myarthritislife.net

Randi and Cheryl dive deep into Randi’s diagnosis journey, her career as a track and field athlete at the University of Alabama, her best advice for newly diagnosed patients, her tips for exercise with RA, and even some dating and relationship advice. Randi was diagnosed with Rheumatoid Arthritis at the age of 16 after 6 years of trying to find an answer. Randi says: “My journey with RA has not always been easy, but it has been rewarding. I have had to learn what works best for me in controlling my RA because of course not everyone’s RA is the same. I manage my RA with exercise, a moderation diet, a medication, chiropractic care, and plenty of rest. Oddly, I am thankful to have been diagnosed with RA at 16 because I have become the best version of myself as a result of it.”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:Randi’s InstagramRandi’s Youtube ChannelWomen’s Health Magazine article about Randi’s storyStatistics about racial disparities in healthcare, chronic pain and rheumatologyFree 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, an intensive online program Cheryl created to empower people with the tools to confidently manage their social, emotional and physical life with rheumatoid arthritis.Here's the show breakdown:01:00 – Randi’s diagnosis story4:35 – What it was like to be a college athlete with RA, doing the triple jump in track and field.8:20 – Randi’s sports injury misdiagnosis.10:20 – Why Randi pursued her personal trainer certification.12:54 – Why Randi pursued Chiropractic medicine as her career.18:00 – Randi’s tips for how to exercise with RA: resistance training, muscle building, cardio and more. 23:10 – How Randi and Cheryl make cardiovascular exercise fun!28:45 -   Randi’s advice for newly diagnosed patients with RA (hint: there are many sports metaphors in this advice!). 32:45 – Discussion about combining “natural” approaches for RA versus Western medicine, and how to find common ground and balance.35:00 - Randi’s tips on how to build a good relationship with your provider.39:38 – How healthcare quality can differ for people of color. 45:46 – How Randi and Cheryl learned not to underreport pain to their providers.48:00 – Randi’s experience dating with RA and love story with her fiance.55:15 - Bonus content: Cheryl’s favorite dance routine she learned in the 1990s from MTV videosMedical 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.

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.

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