S1E4: Our Experiences Finding Lipedema Providers

In this episode, we discuss our personal experiences wearing compression garments and discuss what types we wear, how we choose them, including considerations such as placement, sizing, and cost. We also talk about providers that can help with fitting, checking your insurance coverage, and some benefits of using compression.Show notes:Andy’s Compression GuideUS Lipedema Standards of CareGerman Lipedema Standards of CareBrena’s Arm Compression VideoA grant from the Awesome Foundation disability chapter provided start up funds for this podcast.

In this episode, we share our experiences finding healthcare providers to diagnose and treat lipedema. We talk about what we've learned along the way and what types of care have helped us most. We also highlight the differences between lipedema doctors based on their area of specialization.  This episode includes frank discussion of weight bias and fatphobia in healthcare settings, and we explore how body size and weight changes have impacted our access to lipedema care. We discuss intentional weight loss, "weight management" as healthcare, weight measurements in pounds, and there's a brief mention of GLP-1 medications.  Show notes:  We discuss weight measurements in detail from 1:04:30 to 1:30:35.  Functional somatic symptoms/syndrome https://bpsmedicine.biomedcentral.com/counter/pdf/10.1186/s13030-017-0119-3.pdf Making a Definitive Diagnosis of Lipedema: https://consultqd.clevelandclinic.org/making-a-definitive-diagnosis-of-lipedema A vascular lipedema specialist tested MP for acrocyanosis by having them hold their arm over their head for an extended period of time. We’ve been unable to find a specific name for this test. It’s noted in MP’s medical record as “with provocative maneuver.” https://my.clevelandclinic.org/health/diseases/acrocyanosis ICD codes: https://www.lipedema.org/icd-codes#:~:text=The%2011th%20revision%20 More on ICD codes: https://www.instagram.com/p/C_vZDzNuJxV/?igsh=MXQxcmN5OG04Y3BtNA== Standard of care for lipedema in the United States https://pmc.ncbi.nlm.nih.gov/articles/PMC8652358/ Fat and Fertile by Nicola Salmon  https://nicolasalmon.co.uk/fat-and-fertile-book/ Ragen Chastain https://danceswithfat.org/2015/05/20/fat-people-and-our-knees/ MP’s tips for navigating difficult medical encounters https://www.instagram.com/reel/CpOrgcvDXqW/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA== A grant from the Awesome Foundation disability chapter provided start up funds for this podcast. https://www.awesomefoundation.org/en

In this episode Brena Jean (she/her) chats with us about believing yourself, the paradoxical and existential nature of living with lipedema, her experience of gender dysphoria as a cis Black femme, why it’s important to have affinity spaces as well as engage with diverse communities, and the healing potential of seeking softness.   Brena Jean is a passionate advocate dedicated to raising awareness about lipedema. As a fat, Black, queer, disabled, cis woman, Brena was diagnosed with lipedema in her late thirties, though she had been experiencing symptoms since she was around eleven years old. This delayed diagnosis fuels her mission to help others recognize the signs of lipedema and navigate the often complex and non-linear diagnosis process. Her advocacy work is deeply personal, intersectional, and inclusive of all individuals assigned female at birth who make up the majority of people affected by lipedema. Brena's goal is to normalize the conversation around Lipedema, ensure that Lipedema patients are included in the movement for fat liberation, and to provide a supportive community for those seeking diagnosis and treatment. Content notes: mention of suicide, engagement with the medical industrial complex, detailed discussion of weight—including body shape, numbers on the scale, clothing size, and body policing Show notes:To keep up with Lipedema support group events, join Brena’s email list at www.brenajean.com, scroll down the home page until you see “Get The Good Stuff” and sign up there. Brena’s NAAFA presentation Double bind theory Brena’s Appeal to Kaiser Permanente Lipedema Bodies Of Color Facebook Group Brena’s Live Support Calls Lipedema Sisters Minnesota Facebook Group This podcast is supported by a grant from the Awesome Foundation’s disability chapter.

In this episode Kat Max chats with us about shedding shame, finding freedom in the creative process, radical self-acceptance, regulating the nervous system, imagination, queer awakening, and the thrill of parenting imperfectly. Kat Max (she/they) is a human passionate about healing and personal evolution. Her 2016 lipedema diagnosis provoked an incredible self love journey beyond their wildest dreams. In 2018, looking for ways to unlearn shame, Max began making beautiful art using only models living in fat, marginalized bodies. Since then Kat has come out as queer, and neurodiverse. She has started over after ending a long term marriage and reclaimed her years as a formerly ordained pastor by speaking about body liberation, self compassion, and how to live as our most authentic selves in the world, trading conformity for belonging. Kat lives in northern CA with her two middle school aged kids.  Where to find Kat Max: Instagram.com/katmaxisfree Tiktok.com/katmaxisfree Etsy.com/fatmystic 3 questions with Kat and Val Podcast streaming on all platforms  Episode transcript coming soon  Join our community Wanna be a guest on the show? Show notes: 2016 NPR story about Lipedema Diet Culture The Body is not an Apology Sonya Renee Taylor One of MP’s favorite insights from Sonja Renee Taylor is on ancestors. Sins Invalid’s 10 Principles of Disability Justice  Neurodiversity: Some Basic Terms & Definitions by Nick Walker ADHD  AuDHD ALOK One of MP’s favorite interviews with ALOK is on For the Wild about Unruly Beauty. Rumi’s poem The Guest House Pleasure Activism adrienne maree brown One of MP’s favorite interviews with adrienne maree brown is also on For the Wild, and it’s about Writing Our Future. Chakras Closing reflection: What’s lighting you up?  A grant from the Awesome Foundation disability chapter provided start up funds for this podcast.

In this episode, we talk about seeking trans affirming lipedema care, testosterone and lipedema, intersectionality, and how to talk to younger family members about the hereditary risk of developing lipedema.  This is an edited replay of a live interview on Lipedema Wellness Conversations with Gail & Friends from Tuesday, May 28, 2024.  ⁠Join our community⁠ ⁠Wanna be a guest on the show?⁠ Show notes: Transcript coming soon. Transgender broken arm syndrome  Kimberlé Crenshaw and her TED talk The urgency of intersectionality "You have to act as if it were possible to radically transform the world. And you have to do it all the time." - Angela Davis The Lipedema/Lipoedema Project Provider Directory A grant from ⁠The Awesome Foundation⁠ disability chapter provided start up funds for this podcast. You can watch the unedited video of our conversation with Gail Straker ⁠⁠⁠⁠here⁠⁠⁠⁠. Take action for Palestine! 5 Calls  Email Congress Impact in 3 minutes Crips for eSims for Gaza

In this episode Andy Kuhlmann (he/they) and MP Vare (they/them) try out some different ways to describe lipedema. What kind of disease is it? What’s it like when your body changes and hurts in ways that no one around you can help you understand? MP and Andy share definitions that have helped them, talk about their pathways to diagnosis, and explore some of the narratives they’ve each wrestled with along the way.  Show Notes: Episode transcript coming soon. Brena Jean “Bigger than Fat” Info about the Types and Stages of Lipedema from the Cleveland Clinic The Standard of care for lipedema in the United States also describes the stages.  ⁠Graston Technique⁠ 3 Questions with Kat & Val Making a Definitive Diagnosis of Lipedema by John R. Bartholomew, MD  The pain scale MP’s physical therapist shared with them is the ⁠Defense and Veterans Pain Rating Scale⁠.  A little love from Kermit the Frog Understanding characteristics of white supremacy culture Reclaiming Body Trust  The Body is Not an Apology  A grant from the Awesome Foundation's disability chapter provided start up funds for this podcast.  ⁠Wanna be a guest on the show?⁠ ⁠⁠Join our community⁠⁠

Welcome to Queerly It’s Lipedema! This is a podcast that shares the experiences, perspectives, and strategies of queer and transgender people living with lipedema. In this mini episode, you'll meet our hosts MP Vare and Andy Kuhlmann, learn definitions of lipedema, and discover our vision for the podcast. Show Notes: View transcript Standard of care for lipedema in the United States Do you have questions, ideas, or want to be a guest on the podcast? Email us at [email protected]! Follow our free community on Ko-fi to stay up to date on new episodes and resources. This episode was supported by a disability grant from the Awesome Foundation.