Arthritis Life

James and Cheryl discuss in detail how they manage fluctuating symptoms and pain from chronic rheumatic diseases. James also explains how his patient journey led him to create his innovative 3-D symptom tracker app, Chronic Insights.Speaker bios:James Allen is 39, and has lived with ankylosing spondylitis (AS) for 22 years. He likes to think of arthritis as a clumsy housemate who moved in without permission, who he used to hate but over the years he’s grown to kind of like. It forced him to leave his job as an IT consultant, which in retrospect has been a positive development, because now he’s doing something he really loves - developing a symptom diary app called Chronic Insights.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:Where to follow James:James’ Chronic Insights Instagram: @chronicinsightsEmail James: james@chronicinsights.comWebsite: https://chronicinsights.com/Book James Recommends: “Practicing Mindfulness” audio bookCheryl’s free webinar on March 26th - Sign up hereWait list for Rheum to THRIVE membership Cheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseCheryl’s Arthritis Life social media pages:Cheryl on InstagramCheryl’s website: Arthritis LifeCheryl’s Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Free Facebook group to discuss the podcast and connect further with others: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportMedical disclaimer: All content found on the Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.Here's the show breakdown:02:30 - James shares his relationship to his Ankylosing Spondylitis (AS), it’s like someone who moves into your house who at first you try to make go away, then you make peace with it.05:30- Cheryl and James discuss how metaphors and Acceptance and Commitment Therapy (ACT) help them cope with chronic illness.10:00 - James’ journey getting his initial diagnosis of Ankylosing Spondylitis quickly due to his dad’s help.12:20 - James’ journey managing his AS; initially it was pushed to the back of his mind, then it gradually worsened over time and he sought therapy to help with the struggle.17:10 - Cheryl and James’ important lessons/insights about the importance of communicating your pain levels to your providers. How hard it can be to admit you are in a lot of pain.19:40 - James’ switch to his first biologic, Humira and how it changed his life for the better.21:00 - Cheryl and James discuss the phenomenon that many patients are scared of medications, and how the risk / benefit analysis is different for each patient.23:50 - James enjoys activities like running a half marathon while his medication worked.  Then, experiences his medication wearing off after years of success, which was a massive blow mentally.25:50 -  James starting over with medications, trying different biologics. He experiences progressive deterioration of his health which negatively affects his work life.30:50 - James’ condition progresses to where he has difficulty getting out of bed and his partner has to help him with daily living tasks. He hits rock bottom.32:50 - James comes across meditation and mindfulness, leading to breakthroughs in his ability to manage and cope with pain. He learns to be curious about his pain and develops the ability to observe himself and empathize with his experiencing pain, and eventually accept it.36:50 - Cheryl explains the importance of the developing mental tools to cope with the uncertainties that come with chronic pain and chronic illness.39:50 - James discovers slow and gentle somatic exercise, which helps him relax and relieves joint stiffness and tension.41:50 - The benefits of the reclined exercise bike and a sit/standing desk for James’ back and hip pain.43:50 - How James sometimes allows himself to have a “bad day” and wallow to help his mental wellbeing.46:50 - Cheryl dives into acceptance and commitment therapy.48:50 - James’ challenges with difficulty rating his pain on a scale of 1-10, and why that inspired him to create an app for tracking symptoms.51:20 - Cheryl and James explain the difficulties of rating pain.53:00 – James elaborating on how he developed his symptom diary app, Chronic Insights, which allows you to draw your symptoms onto an interactive 3-D model.57:00 - James’ shares the impact of  having a visual representation of your pain (via his app), and shares the feedback from others who’ve been using the app.1:04:00 - Where you can find James Hosted by Simplecast, an AdsWizz company. 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Speaker biographies: Dr. Micah Yu is double board-certified in internal medicine and lifestyle medicine. He obtained his MD from Chicago Medical School and holds a Masters in Healthcare Administration and Biomedical sciences. He completed his internal medicine residency and rheumatology fellowship at Loma Linda University in Southern California. He has been accepted with a full scholarship to the Andrew Weil Integrative Medicine Fellowship at the University of Arizona.   Dr. Yu has a very unique perspective on autoimmune disease and arthritis as he is both a patient with arthritis and a physician.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. 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 the episode:Dr Micah Yu website /socialsClinic website: www.drlifestyle.orgTikTok: @myautoimmunemd http://tiktok.com/@myautoimmunemdInstagram  @myautoimmunemd  http://instagram.com/myautoimmunemdYoutube: Dr Lifestyle https://www.youtube.com/channel/UCxUp6EwvcIntKm6o4jn6sIAFacebook: https://www.facebook.com/MYAutoimmuneMD/Twitter: https://twitter.com/myautoimmunemdDr Yu’s Recommended reading / viewing:Documentary - Forks over KnivesBook - How Not to DieDr. Andrew WeilU of Arizona Integrative MedicineArthritis Foundation episode on CBDCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseCheryl’s Arthritis Life social media pages:Cheryl on InstagramCheryl’s website: Arthritis LifeCheryl’s Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Cheryl’s free Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic 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.Here's the show breakdown: 01:15 - Rheumatologist Dr. Yu’s journey first with gout, then diffuse joint pain while in medical school, then a diagnosis of spondyloarthritis during his fellowship. 4:30 - What made Dr. Yu want to pursue Rheumatology. 6:00 - Dr. Yu pursues Integrative Medicine and the 6 pillars of Lifestyle Medicine with the help of his wife, also a physician. He adopts a whole food, plant based vegan diet and experiences huge improvements shown in lab work, pain levels and overall weight within 2-3 months.  8:28 - Dr. Yu explains what “Integrative Medicine” is and explains the process he’s going through to get board certified in it, including learning about Chinese medicine, ayurveda, herbal medicine and more.9:51 - Dr. Yu explains what the newer field of “Lifestyle Medicine” is, and the overlap between the two.10:30 - How can an appointment with an integrative medicine Rheumatologist differ from an appointment with a typical Rheumatologist? Discussions of nutrition, sleep, stress and whether medications are necessary. 12:00 - Cheryl and Dr. Yu discuss the importance of each patient’s treatment plan being individualized and customized to them, and how it can be a source of confusion for newly diagnosed patients when they see that someone else with their “same” diagnosis has a different treatment plan. For example, one person with severe disease who is afraid of medication might be confused why another patient (with more mild disease) was told they could avoid meds.15:08 - Dr. Yu answers some of the most frequently asked questions about diet and rheumatic disease (vegan diet, plant based, Mediterranean, Paleo and more). Explanation of the influence of the gut microbiome on autoimmune disease18:50 - Dr. Yu explains which supplements can help with rheumatic diseases and inflammation.20:15- Dr. Yu shares tips for fatigue. 21:30- Definition of “Functional Medicine” and his recommendations on finding a provider with valid credentials. 23:35 - Cheryl and Dr. Yu discuss the importance of sleep, ruling out a sleep disorder and how poor sleep contributes to fatigue and inflammation.24:45 - Dr. Yu discusses evidence for THC and CBD for it’s anti-inflammatory and pain relief properties. 26:00 - Is it hard being a patient and provider in Rheumatology? How Dr. Yu’s passion pushes him through the long hours!28:45 - If Dr. Yu could change anything about Medical School, what would he do?30:00 - Reflections on how the gray areas in between Integrative / Natural medicine and Western Medicine can be difficult for patients who have anxiety about their condition. How Dr. Yu finds a middle ground with his patients - combining medicines and natural alternatives. 31:30 - Dr. Yu’s message to patients who are afraid of medications.33:25 - How do you find a Rheumatologist who also has an Integrative Medicine board certification? 34:45 - Where can people find Dr. Yu online? Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Dr. Kara Wada is an Assistant Clinical Professor and Associate Fellowship Program Director of Allergy/Immunology at the Ohio State University in Columbus, Ohio. She graduated from the University of Illinois College of Medicine and completed her Internal Medicine and Pediatrics Residency and Allergy/Immunology Fellowship at the Ohio State University and Nationwide Children’s Hospital. After having completed additional fellowship training in medical education, Dr. Wada is passionate about building meaningful connection and therapeutic relationships with her patients and inspiring future physicians to do the same. She seeks to empower her patients and coaching clients with a naturally-minded and scientifically-grounded approach to care.  She speaks nationally on topics including medical education, allergic and immunologic conditions. Outside of her work, she is an autoimmune patient, a food allergy mom of 2 spunky daughters, and wife to another Dr. Wada.  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:Where to find Dr. Kara Wadawww.crunchyallergist.comwww.instagram.com/crunchyallergistwww.facebook.com/groups/crunchyallergistwww.twitter.com/crunchyallergyClubhouse @crunchyallergyWhat is a Allergist Immunologist? DR. Kara’s Recommendations:Sleep bookUniversity of Arizona Integrative Medicine website -Book - Nourish Cheryl's Free Handout: Cheryl’s Master Checklist for Managing RACheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportCheryl on InstagramCheryl’s website: Arthritis LifeCheryl’s Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc This 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.Here's the show breakdown:01:25 - Introduction: Dr. Kara’s job as an Allergist Immunologist doctor at an academic medical center, journey with the autoimmune disease Sjogren's syndrome, and her role as a mother to a child with food allergy.4:10 - Dr. Kara’s experience having to advocate to get the blood testing and labs drawn for Sjogren’s disease while she was a medical intern.6:30 - Reflections on the power dynamics in physician - patient relationships and the importance of two way communication.8:38 - Dr. Kara’s tips on how to develop a trusting relationship with a physician.13:48 - How Dr. Kara uses a shared decision making to work together with patients, rather than the old model where the doctor told patients what to do.16:28- Dr. Kara explains the difference between an Allergist Immunologist and a Rheumatologist, and explains how allergist immunologists do more than “just” allergies.20:25 - How Dr. Kara manages her Sjogren’s currently, with an emphasis on the word “and” (western medicine and other “crunchy” alternatives). An explanation of Dr. Kara’s anti-inflammatory living techniques: food, meditation, and most importantly sleep to support health and healing.25:10 - How Dr. Kara un-learned her perfectionist tendencies, and Cheryl & Dr. Kara reflect on how parenting helped them lean into “progress over perfection.”26:28: Reflections on how to accept the reality: you can do everything right, and sometimes your body is going to have a mind of its own. How to accept the element of randomness and move on with an empowered and self-compassionate mindset rather than letting it get us down.27:00 - Dr. Kara explains how she finds a balance between conventional and complementary alternative treatments: “weeding out the woo.”31:10 - The warning signs to look out for when looking at different complementary alternative treatment options33:10 - Dr. Kara explains how the supplement industry is not regulated and can be dangerous and shares her own experience of experiencing liver abnormalities after taking a “superfood” supplement.36:44 - The importance of a personalized care plan and getting a variety of specialists on your care team.38:43 - Just because it’s natural doesn’t mean that it’s healthy. Dr. Kara and Cheryl dive into the balance between being open minded and skeptical about alternative methods of managing rheumatic diseases like rheumatoid arthritis and Sjogren’s.41:00 - Dr. Kara and Cheryl’s discuss the importance of an individualized risk / benefit analysis when trying any new approach (including financial risks / investments, time risks / investments and health risks / investments / benefits).45:02 - Dr. Kara’s recommended resources for patients looking into alternative options: University of Arizona’s Website.46:55- Dr. Kara’s advice about lab tests that are marketed as “the tests your doctor doesn’t know to give you,” particularly for “food sensitivities” or food intolerances.48:33 - Cheryl & Dr. Wada reflect on how to still feel empowered when facing the truth that there may be no “magic wand” solution for rheumatic diseases.49:05 - Importance of making your ordinary routine fun in small ways to add up to larger gains in health over time. Reflections that many people with rheumatic diseases don’t need many supplements.  Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Christa Fairbrother is a skilled and experienced water aerobics and aqua yoga instructor who also lives with multiple chronic illnesses. For Christa, living with arthritis and teaching yoga are integrated.  She credits her lack of pain to aqua yoga practice.  Being passionate about aqua yoga, she wants to see aqua yoga in more communities worldwide.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. Here's the show breakdown:01:15 - Christa’s diagnosis journey: symptoms of RA and Lupus symptoms started at age 12, initial diagnosis of Mixed Connective Tissue Disease (MCTD) after the birth of her 2nd son.05:05 - Christa’s MCTD symptoms (including Raynaud’s) and why it’s so hard to get this rare diagnosis.8:00 - Christa and Cheryl reflect on what it’s like to live with multiple chronic conditions, not knowing at times what is causing which symptom.10:40 - Christa’s up and down journey managing her conditions over many years.15:30 - Cheryl and Christa explain what connective tissue and fascia are.17:33 - Christa’s journey with yoga, which started when she had back pain being a farrier (a craftsperson who trims and shoes horses' hooves). 19:40 - After 20 years of doing yoga, Christa became a yoga instructor.22:11 - What is aqua yoga, and how Christa discovered and fell in love with it.25:33 - The numerous medical benefits of exercise in the water for healthy people and those living with arthritis. 32:15 - Christa’s explanation of the offloading of gravity in the water due to buoyancy and how it gives your muscles a more balanced effort.34:55 - Christa discusses how accessible swimming pools are in the US. 38:55 - Thoughts around safety and germs with aqua yoga and swimming during the COVID-19 pandemic. 41:55 - Interested in the Arthritis Foundation’s aqua therapy program? Here is how you can find it at a local water center!44:40 - Christa describes what happens in an aqua aerobics class.  47:43 - Cheryl and Christa’s insights on why group classes make people feel empowered, especially during COVID-19. 50:56 - Cheryl and Christa’s views on how the sensory elements of water can help regulate our mood, from prenatal experiences to adulthood.55:25 - Christa’s advice on what to do if your joints hurt in the water.1:01:30 - Salt water pools VS. Chlorine pools and water safety advice that you may not be aware of. Episode links:Christa’s websiteChrista’s FacebookChrista’s InstagramChrista’s PinterestBook Christa recommended: Vivek Murphy - “Together” A handout about the AFAP - Arthritis Foundation Aquatic Programhttps://arthritis.yoga/Resources from the aquatic therapy and rehab institute- plus this article Free Handout: Cheryl’s Master Checklist for Managing RACheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportCheryl on InstagramCheryl’s website: Arthritis LifeCheryl’s Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s free Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportFree Handout: Cheryl’s Master Checklist for Managing RACheryl’s Twitter: @realcc This 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.   Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Christy Williams is a certified health coach, wife, mother of two and endurance athlete/triathlete. She has been living with an autoimmune disease called Sero-negative spondylarthopathy (blood negative inflammatory arthritis) since the age of 24. She is now 48 and has been in remission for 15 years due to a combination of Remicade (a biologic disease modifier) and an active healthy lifestyle. Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. She is passionate about helping others with rheumatoid arthritis thrive despite arthritis. She formed the educational company Arthritis Life in 2019 after seeing a need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources. Episode links:Christy’s Instagram: @coachchristy10 Free Handout: Cheryl’s Master Checklist for Managing RACheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportThe Happiness Trap book by Russ HarrisCheryl on InstagramCheryl’s website: Arthritis LifeCheryl’s Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc This 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 everyday 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.Show Breakdown: 01:00 – Christy shares her diagnosis at 24 after the birth of her first child, and her transition into adulthood. 03:20 – Christy’s tenacious drive to stay active, her journey completing an ironman challenge. 5:35: How Christy has managed her inflammatory arthritis over the years: it’s a marathon not a sprint! How she went from being in a wheelchair to completing triathalons after figuring out the right medication and lifestyle interventions such as exercise.8:00 - Christy explains how fatigue still affects her quality of life, and how she copes with it by pacing herself.13:05– Christy shares why and how she became a health coach for people with autoimmune disease, after she achieved remission. 20:30 – How having an autoimmune disease sparked Christy and Cheryl to confront their mortality.23:10 – Christy’s definition of “remission,” and additional reflections on the fact that no two paths towards remission are the same.30:10 – Cheryl and Christy share different debates and challenges within the chronic illness community, including medication shaming, or shaming of people who celebrate natural methods.34:40 - Cheryl reflects on how she’s tried to strike a balance between celebrating how well Western medications have worked for her and also respecting others’ choices if they differ, and how patients within the chronic illness community can unite in our common goals and consider the intent of our messages when we communicate our journeys.36:00 - How Christy & Cheryl cope with unsolicited advice.38:00 - How Cheryl’s therapy helped her cope with uncertainty and gray areas during treatment for RA.41:25 – How Christy has managed her attitude and mindset during the ups and downs of life with inflammatory arthritis.43:38– Cheryl shares how Acceptance and Commitment Therapy transformed her relationship to uncertainty as a chronic illness patient, and how anxiety makes you want black and white answers and certainty.  50:00 – Common misconceptions and myths around arthritis and remission.54:27 – Christy’s advice for anyone battling chronic illness and her best coping mechanisms dealing with uncertainty  57:00 - Christy’s pre-diagnosis challenges with people not believing her.1:03:00 - The importance of sharing our stories, even if we get criticized or misunderstood!  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:0:48: Episode intro2:50: One -  We want you to learn what the disease is and isn’t.9:55: Two - The fatigue can be just as bad as the pain.15:48: Three - It doesn’t just affect the body - it also affects the mind and emotions.20:20**: Four** - It affects EACH person differently.22:50: Five - Daily symptoms are often unpredictable.25:45**: Six -** We want credit for how hard we’re fighting, even when we seem “normal.”27:54: Seven - Sometimes we need problem solving, other times we need empathy.34:30: Eight - Managing the disease itself is a job that takes time and energy.35:55: Bonus point: Take care of YOUR needs as the caregiver/friend37:10: 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 SponsorsRheum 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 to things discussed in this episode:Free webinar: How to Use Social Media and Online Information as an RA patient Without Wanting to Tear your Hair OutFree Handout: Cheryl’s Master Checklist for Managing RACheryl’s Arthritis Life InstagramArthritis Life website@ArthritisLife on TiktokArthritis Life Facebook PageCheryl’s free Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportCheryl’s Twitter: @realccThank you so much to episode contributors from Instagram:@Sophialwebb_  , @mhaggerty_ , @mariavgi , @warriorsmovemountains , @worldofOT , @shelly_steele , _brittanbee_ , @theinvisiblemewarriorspbc , @znev.alia , @aimeefb, @mrs_Alix_Naber, @Lailaschneider, @kat.panning, @Annafitandbeautiful, @danicreegs, @floopilicious, @wsmommie, @house_of_spoons, @Bto22, @diana_rosas023,  @chaichat023, @kheartsphotos, @pdxfashionista, @stephanielabonte, @shelly_steele + numerous anonymous contributors! Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In December 2020, Arthritis Life hosted an “Arthritis Storytelling Hour” where thirteen patients shared vivid tales from their lives.Listen and learn about how difficult the diagnosis process is for some, how people with rheumatoid arthritis and ankylosing spondylitis learned to advocate for themselves, how to navigate work life with your condition, what it’s like to be a “spoonie mom,” the importance of mindset, acceptance and self-care, and more! Video details:Topic: basics of life with RA, diagnosis stories, how diagnosis led to career1:28 - Chloe Umpleby JIA (Juvenile Idiopathic Arthritis) journey6:21 - Kia Peters: diagnosis of RA (rheumatoid arthritis) during graduate school11:00 - Sammantha Dorazio: diagnosis led to career as Nurse Practitioner14:20-Paulina Burzynsk: how RA helped her take better care of your body Topic: Advocacy / learning to speak up24:30 -  Jed Finley example of how he learned how to advocate for himself in the context of medical appointments for his ankylosing spondylitis 30:00 -  Mimi Cross - how she learned that if something makes you uncomfortable you need to speak up even if that feels awkwardRA’s effect on work36:13 - Sarah Dillingham - how she became comfortable talking about RA at work42:30 - Effie Koliopoulos - how RA led her to her passion for writing RA’s and family46:20 - Ushma Sampat - how RA affects family relationships and life partnership / marriage54:50 - Jes Hosjan  How AS affects her experience as a mom and how she learned to advocate as a “spoonie mom!”Humor and Mindset1:03:02 - Cristina Montoya - Humorous take on life with RA1:10:17 - Krista - Her experience chasing a past life to be the same “pre diagnosis” and how she learned to embrace the present1:17:44 - Cheryl Crow - My journey to acceptance of discomfort and uncertainty in life, how ACT (acceptance and commitment therapy) and my two therapists helped me!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 speaker pages and websites:Chloe Umplby - instagram @xchloeumplebyx/ and @spoonfulofchronic/Chloe’s Instagram, Chronically Happy Instagram, Spoonful of Chronic shopKia Peters Instagram https://www.instagram.com/livewellwithkia/Instagram @LiveWellWithKiaSammantha Dorazio https://www.instagram.com/samdorazio8/Sammantha’s InstagramPaulina  Burzynsk https://www.instagram.com/with.paulina/Paulina’s Instagram &  Chronically Happy InstagramPaulina’s WebsiteJed Finley Jed’s twitter https://twitter.com/JediMaster941 and Instagram https://www.instagram.com/jedimaster941/Jed’s Twitter, Jed’s InstagramJed’s blogJed’s writing for Ankylosing Spondylitis.net Jed’s PodcastMimi Cross - https://www.instagram.com/inflammationvacation/Mimi’s Instagram, Inflammation Vacation InstagramInflammation Vacation websiteSarah Dillingham - Grace and Able page  , Women with Rheumatoid Disease Facebook Group https://www.facebook.com/groups/WomenwithRDGrace & Able: Sarah’s company making comfortable and visually appealing wrist braces Women with Rheumatoid Disease - Sarah’s Facebook group & pageEffie Koliopoulos - Effie’s blog: https://risingabovera.com/ Effie’s Instagram  https://www.instagram.com/risingabovera/Effie’s BlogEffie’s InstagramEffie’s TwitterEffie’s Rising Above RA RAra Shop Designs (Merch): Effie’s Youtube Channel: RA and MyselfUshma Sampat - Ushma’s Instagram https://www.instagram.com/worldofot/Ushma’s Instagram Jes Hosjan - Instagram https://www.instagram.com/house_of_spoons/Instagram: House of SpoonsJes’s articles on Axial Spondylitis.net Jes’s Youtube Channel Cristina Montoya - on Instagram at https://www.instagram.com/arthritisdietitian/Cristina’s InstagramCristina’s blog Krista Rowan - Instagram https://www.instagram.com/kickra18/, TikTok  https://www.tiktok.com/@kickra18Krista’s Instagram: @kickra18 Tiktok: @kickra18 Website: alivetoliving.comCheryl Crow: instagram https://www.instagram.com/arthritis_life_cheryl/, website https://arthritis.theenthusiasticlife.com/, tiktok https://www.tiktok.com/@arthritislife, free facebook group https://www.facebook.com/groups/arthritislifepodcastandsupportCheryl on InstagramCheryl’s website: Arthritis LifeCheryl’s Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s free Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic SupportFree Handout: Cheryl’s Master Checklist for Managing RACheryl’s Twitter: @realcc This video is brought to you by the Rheumatoid Arthritis Roadmap, an intensive online education and support program Cheryl Crow created to empower people with tools to confidently manage their social, emotional and physical lives with rheumatoid arthritis. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Photo credit for Lene’s photo: David Govoni. Speaker bios:Lene (pronounced Lena) is an award-winning writer and rheumatoid arthritis advocate living in Toronto, Canada. Born and raised in Denmark, Lene has had autoimmune arthritis since childhood and has used a power wheelchair since her teens. She has a Masters Degree in Social Work and writes books about living well with RA and other types of chronic illness. Lene shares her home with a cat and too many books.  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 this episode:Lene’s website: The Seated View https://theseatedview.com/Lene’s Twitter @TheSeateViewLene’s Facebook https://www.facebook.com/LeneAndersenwriter/Lene’s Instagram  @TheSeatedViewCheryl on InstagramCheryl’s website: Arthritis LifeCheryl’s Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryls 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. Here's the show breakdown:·       01:50 – Lene shares her diagnosis story with Juvenile and Rheumatoid Arthritis·       02:32 – Lene shares some tips for managing the holidays with a chronic illness. ·       05:00 – How Lene learned to embrace “imperfect moments” that create the family legends to make the holidays special.·       11:45 – Lene’s reflections about navigating the holiday season this year during COVID-19. ·       20:55 – Lene shares her journey of creating her first book while battling major hurdles living with her Juvenile and Rheumatoid Arthritis.·       26:45 – Anyone battling chronic illness with big aspirations just take it one step at a time – remember: thinking and planning counts as moving in the right direction. ·       31:40 – Lene gives insight about using her power wheelchair at age sixteen empowered her to live life to the fullest.·       36:25 – Lene discusses human right principles by understanding employment and accommodations for people with chronic illness.·       42:40 – Lene’s advice for newly diagnosed patients.  Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Jen dives deep into how and why she co-founded Savvy-Co-op, whose mission is to empower patients to co-create new solutions alongside health innovators. This includes a discussion of her PhD studies in human factors. Jen walks us through what it’s like for a patient to get their voice heard and provide feedback to healthcare companies and health innovators through Savvy, all while being monetarily compensated for their time. She also explains why it’s crucial for health innovators to seek diverse patient voices. Cheryl and Jen  discuss the importance of quality of life (QOL) measures as part of patient-reported outcomes (PROs).The episode ends with a summary of Jen’s life experiences as a young person with juvenile idiopathic arthritis, and her advice for newly diagnosed patients today.Speaker bios:Jen Horonjeff was diagnosed with juvenile arthritis as an infant and now has a laundry list of other conditions and surprises (like a brain tumor). She is passionate about elevating and valuing the patient voice, and went on to become a health outcomes researcher, human factors engineer, FDA Consumer Representative, and, most importantly, a patient advocate. Jen earned a PhD in Environmental Medicine from NYU, and studies patient-centered outcomes at Columbia University Medical Center. 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:Savvy Coop Twitter and Instagram: @savvy_coopSavvy Website: Savvy.coopJen’s personal Twitter & Instagram: @jhoronjeffJen’s LinkedIn  Free 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 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 - Jen’s experience getting a phD in Human Factors, accessibility, and patient centered outcomes while balancing her Juvenile Idiopathic Arthritis (JIA). 4:50 - How Jen formed Savvy Co-op: a patient owned, public benefit co-op that connects health innovators with patients to provide feedback, where patients are co-owners of the company and are often compensated for their time and expertise.8:00 - Why is it important for health organizations to not only get patient feedback, but also seek diverse patient voices.10:50 - Jen walks us through what it’s like for a patient to get their voice heard and provide feedback to healthcare companies and health innovators through Savvy, all while being monetarily compensated for their time. 15:20 - Why it’s important to follow up with the patient after they complete their “gig,” and let the patient know how their voice had an impact.17:00 - What does “patients are the expert in their care” mean, and what does  “patient centered care” mean?18:15 - An example of the patient voice changing health systems: patient feedback about the importance of fatigue led to it being incorporated as a “clinical trial outcome set,” or something that’s measured.  21:50: Jen’s experience serving on the FDA’s Arthritis Advisory Committee, and explanation of why quality of life (QOL) measures are so important. 25:15 - Chery’s quick plug for occupational therapy in helping patients achieve the best quality of life possible.26:15 - Are the current quality of life measures still relevant today, and are they sensitive enough to measure what’s truly important to patients?31:15 - Issues with patient reported outcomes are not specific to rheumatology, they are common across health conditions; Jen’s example: cystic fibrosis. 32:30 - Cheryl discusses the difference between basic “activities of daily living” (like dressing oneself) and “instrumental activities of daily living” (more time-consuming and cognitively challenging tasks like caring for children, preparing meals, managing finances). 33:30 - Jen’s personal journey with juvenile idiopathic arthritis (JIA): from gold shots in the 1980s and being told to avoid movement and exercise, to a dance major in college. 37:25 - Jen’s advice to parents of children with JIA 38:25 - Why Jen feels her disease DOES define her. 41:10 - Jen’s message for newly diagnosed patients: take time to reflect and grieve, acknowledge that this will suck sometimes, then try to step back and see that there are still probably ways to get to where you want to go. 43:00 - where you can follow Jen and Savvy (+ Jen’s cat as a bonus!). Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Stefanie is the Rheumatoid Arthritis Coach. She’s a mother, teacher, volunteer, Family Nurse Practitioner, and also has rheumatoid arthritis. She was diagnosed about six years ago after the birth of her  first child. As a medical professional with over ten years of experience at that time, she was completely lost and felt like her world was shattered. The day she was diagnosed she cried for 10 minutes in the car, and then decided: “I’m not only going to take control of MY disease, but I want to help others to do the same!”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 learning effective 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:Stefanie’s Rheumatoid Arthritis Coach WebsiteEmail: Stefanie@RheumatoidArthritisCoach.comFacebook Page: Rheumatoid Arthritis CoachStefanie’s Instagram: @RheumatoidArthritisCoachCheryl’s Free 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.Here's the show breakdown:1:00 - Introduction to Stephanie2:05 - How Stephanie’s background in medicine helped her figure out her Rheumatoid Arthritis diagnosis. 4:18- How Stephanie took control of her diagnosis and created the 1st arthritis support group in Las Vegas, Nevada through the Arthritis Foundation. 7:13 - Stephanie’s experience working in critical care (ICU - Intensive Care Unit) as a nurse at the time of her diagnosis and afterwards9:20 - Stephanie’s choice to leave the ICU setting due to her RA diagnosis10:17 - Stephanie’s advice to people with RA who are conflicted about whether to switch careers: don’t be afraid to change paths due to your condition, particularly if it helps you manage your stress better.13:25 - Cheryl & Stefanie discuss the importance of patient education.14:35 - Cheryl & Stefanie discuss how having RA changed how they practice as health providers: learning to listen better and be more present.18:50 - Stephanie’s most important tool to manage her RA on a daily basis: the ability to adapt (it’s a super power)!20:25 - Examples of how Stefanie adapts her daily routines to match her condition and abilities: pants with buttons versus pants without buttons, bar soap versus pump soap, types of cans, and more examples.24:30 - Cheryl’s examples of how occupational therapists help patients with arthritis adapt their daily routines to what works best for each individual. 28:09 - Stefanie’s family history of autoimmune diseases.29:30 - Stephanie’s first big RA flare after her first child was born and her experience with pregnancy and postpartum with her second child was born.30:35 - Stefanie’s difficulties with breastfeeding after her first pregnancy, versus her second pregnancy where she knew she couldn’t breastfeed due to medications.31:47 - Cheryl’s experience with chronic mastitis infections while breastfeeding and her views on infant feeding: fed is best! 34:15 - How Stefanie manages the demands of parenting with young kids: honest communication with your family, and some adaptations like a ramp for her children to get into their own bed.40:00 - Stefanie’s journey to creating her RA Coaching program42:30 - More details about Stephanie’s Rheumatoid Arthritis Coach program: diet, symptoms, and medications, individualized medical chart reviews for Rheumatoid Arthritis patients. 46:50 - Stefanie’s reflections on the importance of individualized care.  Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.