Just Talking Podcast

Stacey Simms returns to the podcast to recap Diabetes Podcast Week, discuss the opportunities for new podcasters to engage in the medium, and her perspective on the hybrid closed loop technology for people with diabetes, and their caregivers. Keep up with Stacey's podcast, Diabetes Connections, at diabetes-connections.com. Run Time - 35:32 Send your feedback to [email protected].

Kerri Sparling returns to the podcast to talk about the end of her blogging adventure, the exciting future of hybrid closed loop technology, mourning her cat Siah, and the wonderful rabbit hole of random top level domains. While it's still a thing, you can read Kerri's diabetes musings at sixuntilme.com, and follow Kerri on Twitter @sixunitlme. Run Time - 43:01 Send your feedback to [email protected].

This week I'm joined by Pamela Jessen for a conversation about her life with multiple chronic conditions including trigeminal neuralgia, fibromyalgia, and chronic fatigue. We also discuss her perspective on the ongoing stigma surrounding patients living with an invisible illness. Keep up with Pamela's advocacy efforts at pamelajessen.com. Run Time - 31:02 Send your feedback to [email protected].  

It's Diabetes Podcast Week! Katie DiSimone joins me for a chat about working together at Tidepool, finding an opportunity to give back to the diabetes community with Loop Docs, and navigating the tricky balance of parenting a teen with diabetes. Keep up with Katie's work and writing at seemycgm.com. For more information about DIY Loop, visit loopdocs.org and looptips.org. As part of Diabetes Podcast Week, listeners are encouraged to visit lfacinternational.org/sparearose to make a donation to a child with diabetes in need. A $5 donation can provide 1 month of life for a child with diabetes. Thanks for your generosity. Run Time - 51:29 Send your feedback to [email protected].

This week I'm joined by MarlaJan Wexler for a conversation about her life with multiple chronic illnesses including a heart defect that resulted in low oxygen for years and lupus. We also discuss the evolution of her patient advocacy platform, her decision to become a registered nurse, and liberal use of humor to connect with others and cope with medical shenanigans. Keep up with MarlaJan's advocacy efforts at luckfupus.com and on Instagram @marlajan. Run Time - 26:00 Send your feedback to [email protected].

Barby Ingle joins me this week for a conversation about living with endomitriosis and reflex sympathy disorder, the ongoing stigma facing women with chronic pain, creating the International Pain Foundation, and preparing for the upcoming International Pain Summit. Learn more about the International Pain Foundation at internationalpain.org. Run Time - 37:15 Send your feedback to [email protected].

This week I'm joined by Megan Elizabeth Lewellyn for a conversation about life with multiple sclerosis, battling the stigma of perception around medical marijuana, becoming an advocate for cannabis as a valid treatment option, and her book, "Segway into my new life". Follow Meg's advocacy efforts at bbhwithms.com. Run Time - 37:20 Send your feedback to [email protected].

Bonita Shelby joins me for a conversation about facing threatening health challenges, battling breast cancer, finding a balance between traditional and conventional therapies, and the value in humor in the face of adversity. Keep up with Bonita at divinehealthchoices.com. Run Time - 29:54 Send your feedback to [email protected].

This week I'm joined by Christalle Bodiford for a conversation about living with epilepsy, the challenges of a misdiagnosis, the relief when a proper diagnosis is received, battling stigma, and creating a nonprofit organization in Life Elektrik to promote epilepsy support, education, and advocacy. Learn more about Life Elektrik at lifeelektrik.com and follow Christalle on Instagram at @christallebodiford. Run Time - 42:44 Send your feedback to [email protected].  

Happy New Year! Rebecca Pine joins me this week to talk about her breast cancer diagnosis, weighing the social and personal implications of breast reconstruction surgery, and co-founding The Breast and the Sea, a written and photographic project empowering breast cancer survivors. Keep up with Rebecca at rebeccapine.com and thebreastandthesea.com. Run Time - 30:43 Send your feedback to [email protected].

Lydia Beier joins me for a conversation about living with depression and bipolar disorder, the challenges and opportunities that come with battling mental health stigma, and the value of starting a conversation to make a difference in people's lives. Keep up with Lydia at beinglydia.com and chronicillnessbloggers.com. Run Time - 26:58 Send your feedback to [email protected].

Jen Loving joins me for a conversation about raising multiple children with diabetes, navigating a hemophilia diagnosis, exhibiting self care through creative hair styles, and the positive impact you can make on the world by sharing your story. Follow Jen on Twitter at @jloveblueshoe and thelovingchronicles.blogspot.com. Run Time - 31:29 Send your feedback to [email protected].  

This week I'm joined by Peggy Stephens for a conversation about inflammatory breast cancer, the challenge of rapidly understanding urgent treatment options, working with the Inflammatory Breast Cancer Foundation, and creating strong and effective advocacy and awareness campaigns for IBC. Learn more about the Inflammatory Breast Cancer Foundation at eraseibc.org. Erase IBC was featured in the Fall 2018 issue of Breast Cancer Wellness Magazine, read the feature at breastcancerwellness.org. Run Time - 34:05 Send your feedback to [email protected].  

Angela Cohen joins me this week to talk about her life with multiple chronic conditions, finding time for self care, defining a unique voice in patient advocacy, and the importance of empathy and shared experiences. Follow Angela on Twitter @angelee828. Run Time - 41:47 Send your feedback to [email protected].

Carin Anderson joins me this week for a conversation about aortic disease, navigating a complicated world of terminology and treatment options and outcomes, growing a small outreach initiative into a widely respected and recognized nonprofit organization, and the complexity of invisible illness and disability. Learn more about Aortic Hope at aortichope.org and follow Chrisa on Twitter @AorticHope. Run Time - 36:10 Send your feedback to [email protected].

This week I'm joined by Chrisa Hickey for a conversation about childhood mental illness, fighting mental health stigma, navigating the Special Education system, sibling issues, and parental self-care. Trigger Warning: Suicide. Learn more about Chrisa's story and advocacy efforts at themindstorm.net and follow Chrisa on Twitter @Chrisa_Hickey. Run Time - 33:32 Send your feedback to [email protected].

Becky Brandt joins me this week for a conversation about central pain syndrome, battling stigma, creating an online resource for world in the Central Pain Nerve Center, and carving a unique path in patient advocacy on behalf of people living with central pain syndrome. Learn more about central pain nerve syndrome at centralpainnervecenter.com and follow Becky on Twitter @bbhomebody. Run Time - 31:12 Send your feedback to [email protected].

This week I'm joined by Michele Hillman for a conversation about her son's multiple misdiagnosis adventures, understanding the impact of strabismus eye surgery for a 22-month old child, gaining an appreciation for how vision impacts development, the value of vision therapy, and channeling a path for empathy and patient advocacy through story-sharing. Michele's advocacy efforts are best followed on her Facebook page. Learn more about vision therapy at covd.org. Run Time - 43:41 Send your feedback to [email protected].

Kathy Young joins me for a lively discussion about her life with multiple sclerosis, finding her voice in patient advocacy through her blog and podcast, and advocating for patient advocates to get fairly compensated for their time. Learn more about Kathy's advocacy efforts fumsnow.com and Patients Getting Paid. Run Time - 36:37 Send your feedback to [email protected].

This week I'm joined by Kelly Crabb for a conversation about her life with Crohn's Disease, finding her voice as a patient advocate, her stamina as a runner, and her community through the Purple Project. Follow Kelly's advocacy efforts on Twitter @girlsgotguts and Facebook @kellyontherun. Run Time - 35:03 Send your feedback to [email protected].

Patient advocate Joan Mueller joins me this week for a conversation about her life with arthritis, its impact on her work as an Assistant Hospital Director, the challenges that come with physical therapy and relearning motor functions, and how to create more empathy in health care. Run Time - 38:44 Send your feedback to [email protected].

This week I'm joined by Kristal Kent for a conversation about fibromyalgia, the widespread pain index, challenges that come with an invisible illness, and the positivity and empathy that an online patient community can generate. Learn more about Kristal's advocacy efforts at @KristalPainChronicles. Run Time - 47:17 Send your feedback to [email protected].

Maria Thomas joins me this week to talk about her life with hyperhidrosis, share her perspective on defining chronic diseases as disabilities, empowerment and validation that is received from peers and providers, and navigating social cues most people take for granted. There's also a lot of my new puppy, Miles Davis, trying to participate in the interview. I did what I could to minimize his contribution. My apologies in advance. Learn more about Maria's advocacy efforts at mylifeasapuddle.com. Run Time - 35:08 Send your feedback to [email protected].  

This week I'm joined by Justin Birckbichler for a conversation about his testicular cancer diagnosis, identifying an opportunity to educate through humor, really clever puns, and creative opportunities for testicular cancer advocacy. Learn more about Justin's advocacy efforts at aballsysenseoftumor.com. Run Time - 33:24 Send your feedback to [email protected].

Erin Smith joins me this week to talk about her life with celiac disease, traveling the world in search of great gluten free food, challenges that arise when your medical necessity becomes a culinary fad, and New York accents. Learn more about Erin's advocacy efforts at glutenfreeglobetrotter.com and glutenfreefun.blogspot.com. Follow Erin on Twitter @gfglobetrotter. Run Time - 32:55 Send your feedback to [email protected].

This week I'm joined by Frank Rivera for a conversation about his sarcoidosis diagnosis, the challenges and opportunities that come with living with a rare disease, living with multiple other chronic illnesses, and how patient advocacy efforts can create lasting relationships. Learn more about Frank's advocacy efforts at lifeasararepatient.blog and sarcoidosisofli.org. Run Time - 39:03 Send your feedback to [email protected].

Robert Joyce joins me this week to talk about his life with multiple sclerosis, life in a small Irish town, making the most of the good days, the value in online patient communities, and Robert takes a few minutes to explain the different types of multiple sclerosis. Learn more about Robert's advocacy efforts at a30minutelife.com. Run Time - 33:43 Send your feedback to [email protected].

This week, I'm joined by Derek Canas for a conversation about having open heart surgery at 3 months old, have five pacemakers installed over his life to date, using positivity and humor through his patient advocacy efforts, the ongoing stigma for people living with AIDS, and the art of a perfect pre-surgery playlist. Learn more about Derek's advocacy efforts at derekcanas.com. Run Time - 32:28 Send your feedback to [email protected].

Content warning: eating disorders. Erin Akers, Founder and Executive Director of Diabulimia Helpline joins me this week to talk about her personal experience with diabulimia, building a community and growing resources for people with diabetes and eating disorders, the constant hustle of running a nonprofit organization, and the First International Conference on Diabetes and Eating Disorders. Learn more about Diabulimia Helpline, including the upcoming International Conference at diabulimiahelpline.org. Run Time - 33:03 Send your feedback to [email protected].

This week I'm joined by Rodney Miller for a conversation about his diabetes diagnosis, his passion for power lifting and Strongman competitions, unique opportunities for patient advocacy and community building, and his nonprofit organization, Bolus and Barbells. Follow Rodney on Instagram, on Instagram, and bolusandbarbells.org. Run Time - 32:18 Send your feedback to [email protected].

Britt Johnson returns to the podcast to chat about filing for disability benefits, the continued stigma that comes from not looking sick, and the tenacity required to find a new normal for her physical and mental health. Follow Britt on Twitter, on Instagram, and on her blog. The resource Britt mentioned during the conversation about disability can be found at allsup.com. Run Time - 38:33 Send your feedback to [email protected].

This week I'm joined by Mike Lawson for a conversation about the joys of theater, redefining personal efforts at diabetes advocacy, the challenges of drawing rabbits, and his new book, "Open Up Your Bag - A Diabetes Picture Book". Visit diabetesdoodles.com to Mike's book. Follow Mike on Twitter @mrmikelawson and t1international.com to learn more about the #Insulin4All movement. Run Time - 33:01 Send your feedback to [email protected].

Ernesto Ramirez returns to the podcast to talk about the birth of his daughter and adjusting to parenthood. We also discuss his new role at Evidation and the growing anticipation for a breakthrough moment in making clinical studies more accessible. Visit ernestoramirez.com to keep up with Ernesto's personal and professional projects. Follow Ernesto on Twitter @eramirez. Run Time - 45:20 Send your feedback to [email protected].

Stacey Simms returns to the podcast to discuss Children with Diabetes annual Friends for Life conference, the community fostering potential of Facebook groups, recent developments about the privacy of closed Facebook groups for patient communities, and podcasting with your neighbors. This CNBC story was the foundation for our conversation about Facebook groups. Visit diabetes-connections.com to listen to Stacey's podcast. Run Time - 34:51 Send your feedback to [email protected].

This week I'm joined by Dr. Karen Schrier, Associate Professor of Games/Interactive Media, Director of the Play Innovation Lab, and Director of the Games and Emerging Media program at Marist College for a conversation about video games in academia. Specifically, we discuss opportunities to discuss ethics in game design and how discussion about and around video games can lead to broader education opportunities. Visit karenschrier.com to learn more about Karen's work and read up on her published books and research. Follow Dr. Schrier on Twitter @drgamermom. Run Time - 39:54 Send your feedback to [email protected].

Lilly Stairs, Head of Patient Advocacy at Clara Health, joins me for a discussion about her life with multiple chronic conditions, her work at Clara Health, the importance of clinical trials, and her podcast, Patients Have Power. You can learn more about Clara Health at clarahealth.com and listen to Patients Have Power. Follow Lilly on Twitter @lillystairs and lillystairs.com. Run Time - 47:32 Send your feedback to [email protected].

>Dana Lewis returns to the podcast for a biannual update on the latest from the #WeAreNotWaiting movement. We also discuss her Red Hat 2018 Women in Open Source Community Award, the joys of international travel, her ongoing research project, Opening Pathways, and her new book about celiac disease. You can learn more about OpenAPS at openaps.org and Dana's research at openingpathways.org. Follow Dana on Twitter @danamlewis. Go to bit.ly/booksbyDanaMLewis to check out Dana's new book. Run Time - 50:11 Send your feedback to [email protected].

This week, Michelle Boise joins me to talk about her role at Beyond Type 1, their DKA Awareness campaign, and her recent longform story featured on previouslyhealthy.org. You can learn more about Beyond Type 1 at beyondtype1.org and read Michelle's feature at previouslyhealthy.org. Run Time - 40:38 Send your feedback to [email protected].

This week Virtue Bajurny returns to talk about mental health and chronic illnesses. We dig into the value of peer support in patient communities, approaches to mental health balance, and also John Woo movies. Trust me. You can learn more about Virtue's work at diabetestalk.ca and insulinpump.ca. Run Time - 46:22 Send your feedback to [email protected].

Robert Gluck joins me this week to discuss the rise of soccer in the United States, our time working together at the American Diabetes Association, his role as a Human Factors Engineer within the Veterans Health Administration, and the importance of proper user-centered design in health care. You can connect with Robert on LinkedIn at linkedin.com/in/robertlgluck. We talked a lot about user-centered design, if you want more visit nngroup.com and uie.com. Run Time - 37:56 Send your feedback to [email protected].

This week I'm joined by Travis Preston to discuss his work as a filmmaker, the latest construction updates in northeast Atlanta, and his upcoming documentary "Race to Tokyo". We also mix in our perspectives on creative storytelling as patient advocacy. Learn more about Race to Tokyo at racetotokyo.com and visit fracturedatlas.org to support Travis' documentary efforts. Run Time - 47:24 Send your feedback to [email protected].

Ryan Prior returns to the podcast to discuss tactics for maintaining sanity amidst all the breaking news while working at CNN, and the ongoing effort to raise awareness and increase research funding for ME/CFS. We also discuss the recent #MillionsMissing campaign and the impact that can be made by a worldwide network of patients and patient advocates. Learn more about #MissingMillions at missingmillions.org and from this #MillionsMissing announcement video on YouTube. Learn more about ME/CFS from Ryan's documentary, Forgotten Plague, at forgottenplague.com. Run Time - 38:55 Send your feedback to [email protected].

This week, Cherise Shockley returns to the podcast to discuss home office layouts, pursuing a degree in social media (only it's not called social media), the diabetes technology space race, and how we might address the lack of representation of women of color in the diabetes community. Follow Cherise on Twitter @SweeterCherise. Follow #dsma on Twitter and @WOCdiabetes on Instagram. Run Time - 41:50 Send your feedback to [email protected].

Adam Hayden joins me this week to share his glioblastoma diagnosis and adventures in patient advocacy. We also discuss the social impact of John McCain's diagnosis, the value of sharing patient stories in a clinical setting, the similarities between impostor syndrome and survivor's guilt, and Adam's work at Our Brain Bank. Follow Adam on Twitter @AdamHayden. Learn more about Adam's work at glioblastology.com and ourbrainbank.com. Adam's open letter to John McCain can be read on Stat News. Run Time - 43:22 Send your feedback to [email protected].

This week I'm joined by Katie McCurdy to talk about her work as a user experience designer focusing on healthcare solutions. In particular, we focus on storytelling as a means to inform conversations between patients and providers, Katie's Health History Timeline, and the potential of her new venture - Pictal Health. Learn more about Katie's work at katiemccurdy.com and pictalhealth.com. Run Time - 43:59 Send your feedback to [email protected].

Still in the midst of unpacking and settling into our home, and in an effort that could resemble something akin to brand synergy, I'm sharing a recent episode of one of my other podcasts, "Mark All That Apply". Catch up on past episodes of "Mark All That Apply" at markallthatapply.com. Run Time - 56:37 Send your feedback to [email protected].

In the middle of our whirlwind adventure of unpacking in our new house, Dayle and I took a few minutes to recap everything that led up to becoming homeowners. It's still unbelievable we've made it to this point, and we can't wait to experience this exciting new chapter of our lives. Head over to my Instagram page if you want to check out some shots during the build. Run Time - 42:38 Send your feedback to [email protected].

So, we're moving into our house, and this week's podcast is sort of a wash, which you hopefully understand. This is me saying "Hi", and a promise that next week we'll recap everything that lead up to the move. Now, back to unpacking! Run Time - 1:18 Send your feedback to [email protected].

This week I'm joined by Courtney Duckworth for a conversation about her diabetes diagnosis, creating a scholarship for people with diabetes, turning marathon training into an opportunity to write a book and actively engage in diabetes advocacy, and being a cheerleader for the Washington Capitals. "The Marathon We Live: Training for a Personal Best in Life with Type 1 Diabetes" is available at everystepcountst1d.org. Run Time - 41:52 Send your feedback to [email protected].

Tabatha Wharton joins me for a conversation about her new book, "Manic Pixie Suicide Mistress". We cover the original inspiration for her book, her process for curating and editing her work, and unique challenges of self promotion. We also discuss her graduate school adventures and a possible PhD in Social Media. "Manic Pixie Suicide Mistress" is available at tabathawharton.com. You can use the promo code "podcast" to get 34% off any order. Run Time - 1:05:02 Send your feedback to [email protected].