Lymphedema Podcast: Recent Episodes
Betty Westbrook
Lymphedema comes in many shapes and sizes. Not every diagnosis or presentation is the same. As a Certified Lymphedema Therapist specialized in Advanced Lymphedema Management I want to share my experiences and knowledge with anyone looking for answers. If you are just now beginning you search or you have been living with Lymphedema for years, I hope you learn something new through the podcast.
Lymphedema is alot! Genetics is alot! We dive deep into the fascinating world of the lymphatic system and how it can go haywire with Dr. Cohen. From birthmarks to complex anomalies, we explored it all. Here’s a sneak peek of what we covered:
- The Lymphatic System 101: We discussed how this vital system works to manage fluid balance, fight infections, and more.
- Genetic Mysteries: Dr. Cohen shed light on how genetic mutations play a role in complex lymphatic disorders, often appearing as a game of chance.
- Complex Lymphatic Anomalies: We uncovered the diverse range of issues that can arise, affecting everything from bone health to the way blood clots.
- Guilt-Free Understanding: For parents, it’s essential to know that these conditions aren’t due to anything they did – it’s all about genetic luck.
Dr. Cohen is a clinical fellow at the Siteman Cancer Center at Washington University in Saint Louis. Originally from New York, Dr. Cohen now lives in Saint Louis Missouri where he works as a clinical oncologist and hematologist for adult patients. He is also a clinical researcher in the field of lymphedema with a focus on molecular drivers of disease and targeted therapies. He has 2 children, Gabe, age 6 years and Ruby, age 10 years who was born with primary lymphedema and a central conduction lymphatic anomaly.
Stay tuned for part two where we’ll explore diagnosis, imaging, and exciting pharmaceutical developments. Remember, you’re never alone on your lymphedema journey. Keep sharing, keep learning, and keep supporting one another!
https://www.brylansfeat.org/campwatchme Brylan’s Feat Foundation would like to sincerely thank each and everyone of our Camp Watchme sponsors for truly going above and beyond for our summer camp. We would not be able to host such a wonderful experience for the pediatric lymphedema community without Jobst, L&R USA, Airos Medical, Pure Medical, LymphaPress, Medi for Help, Juzo, … Camp Watchme Sponsor Spotlight Read More »
This episode discusses recent changes in Medicare policies regarding a four-week trial for pneumatic compression pumps, used to manage lymphedema. While there was initial confusion that Medicare removed the requirement for a four-week trial, Betty clarifies that the trial is still necessary. However, certain wording and specific anatomical measurements have been relaxed, and the requirement … Change in 4 week trial requirements Read More »
Sidney Jacobs Primary Lymphedema Journey Have you ever met someone and you hit it off immediately? It’s not until later that you look back and think “I am so glad our lives crossed paths!” That is Sidney Jacobs in a few words. Sidney is the guest host for Lymphedema Podcast this week where she shares … 2023 Lymphedema Podcast Season 5: Episode 17 Read More »
Dating with Olivia & Nicole Get ready for an exciting episode of the Lymphedema Podcast this week, as our fabulous guest host Olivia Eggers takes the reins. Joining her is the incredible Nicole Faccio, and together they dive into the world of dating with lymphedema. From childhood expectations to the reality of challenges, they share … 2023 Lymphedema Podcast Season 5: Episode 15 Read More »
In this episode of the Lymphedema Podcast, host Betty welcomes the esteemed Caroline Pinney, a renowned expert from Juzo, to share enlightening insights. Brace yourself for an enthralling discussion as they delve into the exhilarating world of the recently concluded Juzo Power symposium and embark on a profound exploration of the revolutionary Juzo night garment. … 2023 Lymphedema Podcast Season 5: Episode 15 Read More »
WRAP 365 Would you bandage your affected extremity for one entire year? This week’s guest has been a secondary lymphedema patient for about two decades. She decided last year, Mother’s Day 2022, that she was going to do something challenging and daring. Listen to Martha’s story of it’s a wrap 365 challenge… It’s impossible to … 2023 Lymphedema Podcast Season 5: Episode 14 Read More »
Kiersten & TreyHoneymoon with Lymphedema
On this episode of the Lymphedema Podcast we chat about all things lymphedema wedding & honeymoon. Kiersten & Trey were married in April. Kiersten was diagnosed with Lymphedema in 2014 and a previous guest on the podcast discussing her LVA surgery. In this special episode, we’ll sit down with both Kiersten and Trey, as they share their experiences and insights on enjoying a honeymoon while managing lymphedema. Discover how Kiersten’s openness about her lymphedema journey and Trey’s support, empowered her to savor every precious moment with her loving husband, despite the challenges.
Kiersten & TreyWedding with Lymphedema
On this episode of the Lymphedema Podcast we chat about all things lymphedema wedding. Kiersten & Trey were married in April. Kiersten was diagnosed with Lymphedema in 2014 and a previous guest on the podcast discussing her LVA surgery. She tells us how she planned and prepared for her wedding with lymphedema. Kiersten is open about her lymphedema journey and didn’t let her disease get in the way of enjoying each and every moment with her husband. Tune in next week as we continue the conversation on honeymoons with lymphedema.
May is mental health awareness month! There are two people from the lymphedema community that embody this for me, Dominique and Juliana. Both have been vulnerable about their personal struggles with lymphedema, mental health, and physical wellness. Together they started the #sweatcheck movement for the lymphedema community. I hope you enjoy this candid conversation with three friends who want to spread awareness, wellness, and happiness. @theprocess2progress @lymphie.fit
Student OT review of Lymphedema Clinical Rotation
If I am being honest, which I have shared this before, I would have never picked Lymphedema as my career specialty or as a clinical rotation in school. Thankfully, that is not the story for this week’s guest. Addison is in her final year as an student OTD (Doctorate of Occupational Therapy) and has recently completed a 6 week rotation in an primarily lymphedema rotation at a cancer treatment center in Central Arkansas.
Listen to this episode if you are a student from any discipline about to embark on you brown lymphedema clinical rotation.
Guenter Klose Returns for a Candid Conversation on MLD, Myth Buster Addition – Part 2
Guenter Klose joins us for episode 9 as we continue the conversation about Manual Lymphatic Drainage. Guenter has decades of experience teaching and treating lymphedema. He is a respected pillar in the international lymphedema community and his knowledge is matched by few. We are so excited to have him back with us as he provides his insights on MLD.
Guenter Klose Returns for a Candid Conversation on MLD, Myth Buster Addition – Part 1Guenter Klose joins us for episode 8 of the Lymphedema Podcast as we discuss Manual Lymphatic Drainage. Guenter has decades of experience teaching and treating lymphedema. He is a respected pillar in the international lymphedema community and his knowledge is matched by few. We are so excited to have him back with us as he provides his insights on MLD.
Life Coaching for the Lymphedema Patient and Clinician, Part 2
On this episode we will continue our conversation with Ellen Faulhaber, A certified life coach. Many lymphedema patients live with depression, grief, anxiety, and suicidal ideations. Medical providers are frustrated, overwhelmed, and live in a state of chronic stress. Ellen is a Certified Life Coach trained by The Deep Coaching Institute, focusing on Presence and Somatic based coaching. She is a Certified Meditation Teacher and believes that a consistent meditation or grounding practice and the embodied practice of leading with love has the potential to transform our way of being and serving. Meditation or grounding is key for a life thriving in optimal physical, emotional, and spiritual health and wellness. Ellen is the Product Manager at Essity for all Lymphology Products in North America.
Life Coaching for the Lymphedema Patient and Clinician, Part 1
On this episode Ellen Faulhaber, A certified life coach, will join me in a discussion to encourage listeners that there is help available. Many lymphedema patients live with depression, grief, anxiety, and suicidal ideations. Medical providers are frustrated, overwhelmed, and live in a state of chronic stress. Ellen is a Certified Life Coach trained by The Deep Coaching Institute, focusing on Presence and Somatic based coaching. She is a Certified Meditation Teacher and believes that a consistent meditation or grounding practice and the embodied practice of leading with love has the potential to transform our way of being and serving. Meditation or grounding is key for a life thriving in optimal physical, emotional, and spiritual health and wellness. Ellen is the Product Manager at Essity for all Lymphology Products in North America.
State of CDT with Guenter Klose
This is a wrap on the March series, not all CLTs are created equal. Guenter has decades of experience teaching and treating lymphedema. He is a respected pillar in the international lymphedema community and his knowledge is matched by few. In this interview we highlight the challenges faced by CLTs, challenge CLTs to highlight their skill/needs to their administration, and discuss the state of CDT today. Enjoy this insightful conversation, and I hope you are ready to learn something new today.
NOT ALL CLTs ARE CREATED EQUAL
To continue the discussion for this month’s topic, Not all CLTs are Created Equal, Dr. Heather Evans, Doctor of Chiropractic, Owner of Bodywork RX is joining me on the podcast
Continuing the discussion that not all CLTs are created equal with Dr. Heather Evans today on the podcast! Heather has years of experience in multiple roles as a CLT. From PTA, to LMT, to business owner and now Doctor of Chiropractic’s, she has literally seen it all.
Now more than ever patients must advocate for themselves and research the medical professional they choose for care wisely. Listen to this insightful conversation with Heather, I hope you are ready to learn something new today!
Brooke Beilman, MS, CC-SLP, Clinical Doctorate StudentWelcome back my friends to the new season of Lymphedema Podcast! Happy Lymphedema Awareness month to all of the Lymphies on their journey!
Episodes will release on Wednesdays this season and I will take the month of July off while away for Camp Watchme. Now that those few housekeeping items have been addressed let’s jump into the theme for this months kick-off series
NOT ALL CLTs ARE CREATED EQUAL
To continue the discussion for this month’s topic, Not all CLTs are Created Equal, Brooke Beilman is joining me on the podcast.
Brooke Beilman is a MS, CCC-SLP Clinical Doctorate Student. As a Speech Pathologist she took interest in the changes caused by internal swelling to patients swallow mechanics. Her social media has helpful information about head and neck cancer effects (ie lymphedema) you can find her on Instagram as @brookebeilman
Welcome back my friends to the new season of Lymphedema Podcast! Happy Lymphedema Awareness month to all of the Lymphies on their journey!
Episodes will release on Wednesdays this season and I will take the month of July off while away for Camp Watchme. Now that those few housekeeping items have been addressed let’s jump into the theme for this months kick-off series
NOT ALL CLTs ARE CREATED EQUAL
I am so glad you joined me for this episode, I hope you are ready to learn something new today.
Part 3 is ready to go!! Check out the final episode on DME, insurance claims, and why having a GREAT fitter is so important! Contact Sophie by visiting their website
When you are looking for reliable advice on insurance claims, product selection, and availability it is VITAL to have someone you trust. Sophie will tell you in this episode just how qualified she is…it’s too much for me to list here, lol. Check out part 1 of my series on DME, product selection, and the … Episode 111: Part 1 Durable Medical Equipment (DME), Insurance Claims, and Products with Sophie Long Read More »
I love sharing stories of people THRIVING with lymphedema, you probably know this by now, right?? Lindsey is a gust of fresh air with a contagious personality! Juzo’s Feature episode this month features Lindsey Sosovec–Juzo Champion, Cancer survivor, Secondary Lymphedema patient, and adventure seeker. I know you will enjoy learning more about her and from … Episode 110: Lindsey Sosovec Juzo Champion Read More »
Do you ever wish you had a stylish option to cover up your leg compression? Stemwear is here for you. The creator of Stemwear joins me for this feature episode on her creative solution to boring beige compression that really didn’t fit her personality or style. Stemwear has styles for men and women, as well … Episode 109: fashionable compression cover up Read More »
This will forever be one of my favorite stories to share, for the rest of my life! As a mom I relate so much to the struggles that Tyla has faced, as a CLT I didn’t know how to standby and listen as she shared her struggles. So I invited her to fly half way … Episode 108: mama bear makes a friend Read More »
Women living with Lymphedema have a higher risk of developing genital lymphedema as a result of vaginal childbirth. This postpartum story is for any woman who may be fearful of pregnancy and childbirth due to her lymphedema diagnosis.
Dr. Jenna Wishnew is back to talk about wounds and lymphedema! Last time she joined me on the podcast we talked about how a wound care doctor is different, and it was very informative! Today we are going to talk specifics about wounds, so pop in your ear buds and take notes because this is … Episode 106: When Does a Wound Need A wound Care Doctor? Read More »
Medi USA is back on the podcast with a great interview on product selection. As a CLT it took me a very long time to feel comfortable recommending products, and I still struggle to confidently do so 6 years into this specialty. Jennifer does such a great job explaining 1) Fabric options from Medi USA. … Episode 105: A conversation on product selection Read More »
As April comes to an end so does the series of grief on the spectrum. Thank you to Marshall Lyles for being a wonderful guest! He had a concussion and injured ankle BUT STILL he pushed through and dropped so much wisdom and insight for all of us. As he mentions in the interview, Guest … Episode 104: Patient Grief Read More »
To continue this months series on grief, I want to encourage you to listen to episode 99 featuring Jen Bell. This interview reflects on statements made in episode 99 and overall it is a fantastic resource for anyone in a relationship with someone who has a chronic illness. One comment Marshall made in this interview … Episode 103: Partner/Spouse grief Read More »
Continuing the series on grief this month, listen to this powerful episode for parents! Please like and subscribe to Lymphedema Podcast on the website or on your favorite app! Share this episode with any family you think could benefit from the message.
This episode is dedicated to John Jones, Luann Jacobs, LaTonya Lomax, Michael Birmingham, Carol Rhoden, and the many other patients over the years who have a permanent place in my heart. In October/November when I was preparing to shut the podcast down for the season, I was so burnt out. Life had caught up with … Episode 101: CLT grief Read More »
This is your warning to not play this episode with your in laws or kids around, it’s not *too graphic but unless you want to define vagina for your kids or blush next to your father in law…take my word and listen in your ear-buds or when alone. Trish has 12 years of experience as … episode 100: Trish’ pregnancy journey Read More »
For better or for worse, in sickness and in health, til death do us part…those are the marriage vows most people are familiar with. But what about “for the few days a year I don’t feel overtaken with swelling and depression, in a sickness not many doctors understand and health that isn’t promised to last, … Episode 99: Spouse/Partner Perspective on Lymphedema Read More »
Medical device manufacturer medi® USA announced the launch of the new circaid® profile foam sleeve for lymphedema management at-home. The circaid profile foam sleeve is an alternative or supplement to nighttime and home-care bandaging applications that applies gradient compression to the effected limb or limbs. Engineered with first-use foam for hygenic confidence and brrr® cooling fabric proven to … Episode 98: new Circaid Profile Nighttime compression garment Read More »
I hope you enjoyed last weeks interview with Allison on Medical Trauma. As we learned, medical trauma is experienced and perceived differently from person to person. Listen to part 2 to learn: action steps toward helping a child (or adult) who may be suicidal, how parents and caregivers can be affected by medical trauma, and … Episode 97: Pt2 Medical Trauma Read More »
Clinically, Medical trauma is defined as a set of psychological and physiological responses to pain, injury, serious illness, medical procedures and frightening treatment experiences.1 Medical trauma can be viewed as an acute onset of a disrupted physiological system in which the ongoing threat is internal (i.e., the body) and may be long-term or permanent (e.g., … Season 3//Episode 96 Read More »
Last week we left off talking about how it is so hard as a CLT or caregiver NOT to love our patients and have a deep connection with them. Emotional burdens, compassion fatigue, stress, and anxiety that comes from work is SO hard to separate from our personal life, and vice versa. In part 2 … EPisode 95: Part 2 Emotional Wellness Ft. Adie MacKenzie Read More »
I began creating content for Lymphedema Podcast in the summer of 2018. It started with a “business plan” outlining 52 episodes to cover for a one year podcast with weekly releases in 2019. I launched the first four episodes on January 7, 2019, and although content was not always released weekly I have not stopped … Episode 95: part 1 Emotional Wellness ft Adie MacKenzie, LMT, PTA, CLT-LANA, Health and Wellness Coach Read More »
This weeks episode bring my most frequent and fun guest back to the podcast, Caroline from Juzo! We are talking all things compression wraps. What features Juzo compression wraps offer, the benefits to wearing them day and night, and the indications for using them when looking at the big picture. Meaning, do you live alone, … Episode 94: Juzo {{adjustable and REVERSIBLE}} Compression Wraps Read More »
Last week was a highlight of my career. In 2019, I presented at the NLN conference for the first time. It was both exhilarating and intimidating to present to a large audience. BUT THIS YEAR it was different. The groups were smaller, the schedule was similar to a marathon, and the audience was 100% my … Epiosde 92: NLN Conference Review Read More »
Introducing Lymphedema Podcasts resident wound expert, Dr. Jenna Wishnew! I am excited to have Dr. Wishnew with Lam Vascular as a podcast sponsor. She will feature quarterly episodes on wounds. If you have specific questions for Dr. Wishnew please email them to me at lymphedemapodcast@gmail.com or visit her website to make an appointment with her … Episode 91: When do you need a wound doctor? Read More »
To learn more about how to obtain a pump visit this website To watch the Patient Roundtables Eric and I mention, visit this link
The guest host for this week shares her story of breast cancer diagnosis and eventual Lymphedema diagnosis. Deborah’s story may sound similar to your personal journey, but what she did AFTER her diagnosis is what is helping so many today thrive and find community. Conversationly Thriving with Lymphedema was launched in early 2020 by Bisa … Episode 89: Guest host Deborah Pearls Read More »
It didn’t take me long to realize that Dominiques’ story is about more than his process2progress initiative. This quote from our interview is still ringing in my mind “The first person I met with Lymphedema was my mom” give me chills every time! Many people go years alone on their lymphedema journey, and Dominique did … Episode 88: Juzo champion Dominique Rogers Read More »
Gerry Makoid, CEO of AIROS Medical, joins me this week to talk about their pneumatic compression devices for patients with Lymphedema and Vascular conditions. Later this week, I will release an Unboxing video for you! This is my first time using this device, and it is obvious a few times (: As a CLT I … Episode 87: AIROS Medical Read More »
Today’s guest podcaster is Jean LaMantia. Jean is a registered dietitian with a virtual private practice. She is one of the co-authors of The Complete Lymphedema Management and Nutrition Guide, and the creator of Lymphedema Nutrition School. You can reach her at jean@jeanlamantia.com Here are some links you can check out Just Wellness Nutrition School The … Episode 86: Guest host Jean LAMantia, author of The Complete Lymphedema Management and Nutrition Guide. Read More »
Brittany Williams is back again for an important interview. Brylan’s Feat Foundation will be hosting their annual fundraiser THIS WEEK. To donate and join the challenge raffles follow this link. If you are in the area and want to join us in person for the cocktail hour on Saturday the 28th follow this link. There … Episode 85: Light the Night Gala benefiting Brylan’s Feat Foundation Read More »
Olivia was born with Lymphedema, and she is sharing her perspective on mental health as it relates to her chronic illness. This weeks guest host was featured here earlier this year when I read her blog post “The Monster on the Playground”. Her message was clear, that as a child, she made to feel less … Episode 84: A Lifetime of Lymphedema Read More »
This weeks guest host is a fellow podcaster who was born in Puerto Rico with primary lymphedema. She has an incredible story to share and I know you will learn so much from her raw and HONEST episode. I would urge you to not listen with young children around, or during carpool after school. This … Episode 83: Genital Lymphedema Read More »
It is Light the Night month!! Brylan’s Feat Foundation is hosting a virtual gala on August 28th (but you could come hang out in person TICKETS AVAILABLE HERE). Join my team to help raise money for this special cause. The last several episodes have highlighted Camp Watchme, which is a Brylan’s Feat event. Children, parents, … Episode 82: Super sanger Family + janelle Read More »
Waterfall hike!Christina and NickLauren and Nick
Clearly my numbering is off, ha!
Enjoy this special interview with camper Nick, his mom, Christina, and their CLT, Lauren! Pictures are worth a thousand words but hearing Nick say he can’t wait to come back next summer is priceless!
Bisa Dobson, RMT, CDT
Please give Bisa a warm welcome to the Lymphedema Podcast community! When I shared I was looking for guest hosts for the podcast she was the first to message me. And here is what I loved most about her message…she did it scared! She was interested but unsure of what to talk about, after a quick call she reassured me she would take a date and come up with something. Can you relate to that, doing something even though it’s new and unfamiliar? I can.
This is her story of how she was diagnosed with Primary Lymphedema and her journey to help others with Lymphedema. Visit her website to learn more or to connect with her.
Elise Cantu, PT, DPTLANA-Certified Lymphedema TherapistVoice behind TheOncoPT Podcast
I don’t want to give away what this guest host episode is about but I will say 45 seconds into editing I am already crying! Thank you to each of you.
There will be more Camp Watchme information and interviews coming on the podcast, this is just a preview.
If you are a Lymphedema Therapist (CLT) or provide any medical services to this with Lymphedema but have never treated kids, please listen to this guest hosted episode.
Learn more and Register here!
Thank you for being a Partner of Lymphedema Podcast…
This interview with Erin was so fun for me! As a CLT who hadn’t been back inside a clinic in months this was like SciFi talk to me. I have seen the 3D scanning in person and I can say “It really is that easy & that cool!” If you are in need of new garments soon or want to share with episode with you CLT or fitter please, do! MediVision can be the solution to tricky measurements for custom garments. Contactless, fast, and accurate.
Listen to my interview with Erin, I hope you learn something new
What a month it has been! June was packed for me, how about you? Lipedema awareness month, Camp Watchme (session 1&2) in Colorado, two NEW podcast sponsors, and a whole bunch of personal changes took place. I can’t wait to share more information with you in July about the impactful week had at Camp Watchme.
As I mention in the episode the National Lymphedema Network has opened registrstion for the fall conference in Boston! October 1-410 lab session to obtain NLN EXPERT CLINICIAN status I am one of the presenters follow this link to register now! Register
Welcome to Airos Medical as an annual sponsor for Lymphedema Podcast. To learn more about them please follow this link: Check them out!
ROCKSTAR ALERT!!! Caroline and Cara are bringing some fire to Lymphedema Podcast this week. When I asked for guest host for the podcast I knew immediately I wanted to reach out to Caroline to share her perspective. When she suggested to interview a fellow Lipedema gal I quickly suggested Cara. What a duo!
I know you will enjoy this special guest host interview. Be sure to find their accounts on Instagram and Facebook. Caroline Sprott @powersprott and Cara @palegingerpear
As I continue to share about Lipedema for the month of June there will be a guest podcast host next week. I expect it to be a very informative and exciting episode. This week Kelly with Wildheart Wellness and Coaching is back to share some patient tips and advice. Have a listen. Remember to join the Facebook groups she mentions as well as to check out her website for coaching.
I will be away for Camp Watchme the next few weeks so please be patient as I work to upload the next few episodes from Colorado
Kellys’ Story: As a personal health coach Kelly knew something was amiss when she gained a significant amount of weight following the weening of her youngest child.
June is Lipedema awareness month and here at Lymphedema Podcast I support knowledge! Many people are misdiagnosed when they don’t fit into a box of a certain disease, condition, or syndrome. If you are listening this month you may be encouraged or educated by this topic.
In our interview Kelly discusses how she saw signs throughout her life of Lipedema, but had no idea what it was. Listen to the full interview to hear how she has struggled mentally, physically, with insurance, and learned to advocate for others! Enjoy!
If you would like to learn more about Lipedema visit this website. To learn more about Kellys’ coaching and resources check out her website.
Have you ever felt alone, discouraged, or isolated because you NEED Lymphedema treatment but you are physically unable to make it into a clinic multiple times a week. Have you ever wondered how to obtain an prescription for home health therapy? OR will my insurance pay for Home Health services? Marina with Ultra Therapy Solutions is back this week to talk about home health from the patients perspective.
Be sure to subscribe, like, and share Lymphedema Podcast with your doctors, lymphedema therapist, and others who may need this resource.
Photo by Kelly Lacy on Pexels.com
Home Health Lymphedema treatment can seem intimidating but Marina with Ultra Therapy Solutions is here to help!
She provides practical ways to provide great in home care as a CLT! Listen here for some tricky scenarios, and not so textbook examples of what might come up in Home Health CDT.
If you are interested or looking to join a home health agency in Texas Ultra Therapy Solutions has an immediate need for CLTs (PT/PTA/OT/COTA/RN) visit their website to apply.
If you missed part 1 of my conversation with Caroline Pinney from Juzo, go back and give it a listen! Here are the final five common lymphedema patient questions.
Juzo is a proud sponsor of Lymphedema Podcast! As a novice CLT I relied heavily on my local Juzo rep to provide me with resources, suggestions, and advice for picking the right garment for my patients. If you are a CLT in need of the same guidance, please do not hesitate for reach out to them. Caroline is just one of the many helpful, knowledgeable, and dedicated individuals with the Juzo family!
Part 1: Caroline Pinney, Education and Training Manager with Juzo, joins me again for an information packed episode! In the opening I state this would be a short and sweet episode…but it was so long I divided it into two episodes so that the information is easier to digest.
In this episode we answer five very common questions from Lymphedema patients about garments, exercise, and much, much, more!
Hi friends on the internet! I hope you have enjoyed the personal stories of Alexa, Amanda, Bisa, Deborah, and Niccole. It has been a true honor to allow them this platform to share their stories, experiences, and views. Each person walks their journey differently; and each person has their own views of their experience. I hope this conversation opens our eyes to the shared struggle within the lymphedema journey and enlightens our minds that we are each accountable for our actions and words.
I am sorry this post is late. A small unrelated life update: we are moving, currently in the process of selling our home (FSBO), all while keeping the many plates spinning that make up our lives. Thanks for your patience, I truly appreciate each of you who listen regularly and engage with me on social media.
XOXO,
Betty
As many of you heard from part 1 of this interview series, many people living with Lymphedema have felt depressed, isolated, suicidal, and lost at times. Please be encouraged that it is season of life and often a choice if you stay in that mindset. In part 2 of this series we hear from Deborah and Bisa who both see mindset and community as a tool for positive change. Please enjoy!
If you joined me on March 6th for World Lymphedema Day you know that we had a lot of great conversation going on with some (new to me) friends on social media. Facebook, Instagram, TikTok, can all be great resources but they also create opportunities for people to be targeted for their uniqueness.
Please enjoy part 1 of our discussion on this important topic: comparison vs community within the Lymphedema community.
Please visit the pages of each of these incredible women who opened up about their personal experiences.
https://www.pandereshoes.com/products/barista-clearance
Pandere Shoes is a female run shoe company that wants to give you the shoe experience you deserve. My interview here with Laura Oden, Founder and CEO, tells of her personal experience with Secondary Lymphedema and her struggle with footwear. Being from Alaska she also relates to the struggles of accessibility, or wearing bags over her feet when shoes wouldn’t fit. After listening to our conversation I hope you visit their online shoe store to find what they might have for you.
Photo by Ivan Diaz on Unsplash
The National Lymphedema Network has not yet published their position statement on their website, however you can listen to my interview with Jeannette Zucker, PT, DPT, CLT-LANA for the summarized version. We discuss also the NLNs’ daily webinars during the month of March to help spread awareness and education for Lymphedema Awareness Month. All webinars are available for free on their website (the fist webinar topic was the COVID-19 vaccine site).
Does this girl look like a monster to you?!
On March 6th of this year, I received an email from Olivia. She had joined us in celebrating World Lymphedema Day earlier via our live hangout event (IT WAS A GREAT TIME!) Although she has had lymphedema for many years now, this was her first time to really participate in WLD. She told me in her email “I am so glad that I finally mustered up the courage to get involved. As I had said in the chat, I am a 23 year old who was born with primary lymphedema across my entire body and boy has it been a rollercoaster of a life! “
In the moment I made it about me, I am human and generally the first person I think about it myself, sorry. Her email made me feel proud that I withstood the challenges of scheduling the guest speakers, creating the advertisements, practicing on the live stream platform, waking up early, getting a baby sitter, and managing to still pump while away from my son. (Yeah, I went there)
But five seconds after reading the email I thought “WOW, I am so glad she had the courage to join us. It must have been such a relief to hear stories from others who share her experience. She must have felt so alone all of these years!” and that brought me to tears. The next morning I read her blog post and looked her up on Instagram. More tears!
Olivia is a beautiful woman with a radiant smile, killer piano skills, and voice to boot! I am jealous of anyone who can sing, it is the one talent I wish I had.
Reading Olivias’ blog entry made me think of so many children who feel this way or will face these same challenges is we don’t do something: Cora, Kyli, Emma, Brylan, Noah, Tristan, Miguel, Mark, Ryland, Klaus…the list literally goes on and on in my mind. To the point of fury! As a mother now, I see this disease through a new lense. Before Holt, I was empathetic, compassionate, and sad for those who live every day with this disease. Now, with my son in my arms, I am hell bent on helping children learn the treatment regimen as early as physically possible to diminish the effects of fibrotic tissue in babies, finding mental health professionals to support the families, and teaching more CLTs how to effectively treat children throughout their lives and not just once a year check ups.
Olivia, I sincerely hope I did your blog post justice by reading your heart felt words for others to hear. You are radiant. Do not let anyone else ever treat you like you are less: beautiful, worthy, able, or deserving of happiness. You are not a monster on the playground, you are a WARRIOR.
Provided by Lohmann and Rauscher
Pun intended! The Tribute line from L&R provides endless opportunities to conTRIBUTE to your night time success over your Lymphedema. Head to toe the Tribute Night garment can be customized to your needs. Even if you are looking for a off the shelf option, L&R has you covered there, too!
Lindsay and I really dive deep into the specifics on the Tribute line from start to finish, L&R puts your needs and feedback first to provide you with the best night time garment possible. Listen here to learn more!
Today’s episode is a look forward at the month of March and a look back on why I started Lymphedema Podcast! I hope you enjoy hearing my story of how I became a PTA, CLT, and then advocate.
Find more information about the events happening for Lymphedema Awareness month by visiting their websites:
National Lymphedema Network: https://us02web.zoom.us/webinar/register/WN_n8lEPc8SSCOKWczYjgewfQ
Amanda Sobey: https://www.facebook.com/am.sobey/events/?ref=page_internal
Anna Maisetti: https://www.instagram.com/stile_compresso/
Kathy Bates: https://learn.ticketspice.com/2021-wld-celebration
and me, Lymphedema Podcast: https://viewstub.com/World-Lymphedema-Day-with-Friends-
There are more happenings taking place that you should take advantage of all month long! Browse social medial for more options!
I hope to see you Saturday at my Live Virtual Hangout!!
Are you a CLT who would like to learn more about Oncology Physical Therapy? This summit is for you! Listen to my conversation with Elise Cantu, PT, DPT, CLT and Jimmy McKay, PT, DPT to learn just what to expect at the this amazing VIRTUAL conference! Too many exclamation marks?!?!? I just want you to … Episode 62: Virtual Oncology PT Summit Read More »
On January 13, 2021, The Lymphie Life celebrated 10 years of guidance, advice, and encouragement with the Lymphedema community. Alexa is a top notch gal who started the blog and a shout into the dark to see if anyone shouted back…and they did! Listen to our conversation of how within the first 48 hours of … Episode 61: Happy Birthday The Lymphie Life Blog!! Read More »
Caroline Pinney with Juzo is joining me again to talk about quality compression versus crap-pression!! Never fall victim again to compression promises that fall flat! If you have been with me from the beginning you know I talk a lot about the importance of compression. It is the FOUNDATION to long term results while keeping … Episode 59: How to Make Sure You’re Buying Quality Compression Garments and Not Falling For Gimicks. Read More »
Pediatric Lymphedema can be a challenge, especially when you may not have much experience treating children with Lymphedema. The purpose of this conversation with Amber, CLT at Texas Children’s Hospital in Houston, is to give you some advice for modifying your current evaluation process. Keep in mind that you are the key to this child’s … Episode 60: how to modify an adult evaluation for Pediatric Lymphedema Read More »
Grab a notebook and pen for this one! Part 3 of my conversation with Dr. Chen is ready for you to take some notes. We are so fortunate to live in this moment in time where there is data to support a clinical cure for lymphedema. I am not naive to think this procedure will … Episode 58: Dr. Chen Part 3 Conversation on Lymphatic Reconstruction Read More »
I hope you enjoyed part 1of my conversation with Dr. Chen last week. To date this has been one of my favorite topics and conversations on the podcast. So many people are interested in lymphatic reconstruction surgery with the HOPE of being cured from this disease. Dr. Chen is dropping some knowledge and I hope … Episode 57: Dr. Chen Part 2 Conversation on Lymphatic surgery Read More »
I am excited about all the new happenings in 2021 for Lymphedema Podcast. Listen to this short and sweet message from me so you know what to look forward to. January episodes are already shaping up to be a great line up! -Love, Betty
If you have been following my social media accounts then you know that I recently shared that I a long time patient and friend died earlier this month. The reality of it all has taken some time to sink in. The coincidence that she was laid to rest on the day of her birth has … Episode 54: Five Lessons I Learned from My Patient. Read More »
Lymphedema management is made easier with the mediUSA Reduction kit garments!! Listen to this special episode with Christoper Miles, Senior Manager for Clinical Services at mediUSA, for all the details. What is a reduction kit? Is it machine washable? Can I wear it at night? ALL of that and more in answered in this months … Episode 53: mediUSA Reduction Kits with Christopher Miles Read More »
http://www.juzousa.com Whether you are new to your lymphedema diagnosis, or you are an experienced therapist, this conversation with Caroline Pinney is a great resource on compression! We discuss so many common questions related to compression garments. She clearly breaks down the difference between flat knit or circular knit compression and how they are made. As … Episode 52: Flat Knit vs Circular Knit Compression a Q&A with Caroline Pinney, Juzo Education Manager and Compression Expert. Read More »
It has been month since I have posted a new episode, and boy have I missed all of you! Some of you know that I recently had a baby and have been enjoying time adjusting to this new chapter in our life. Now that I am back I have some great new content lined up, … Episode 51 : Pedors Shoes Interview with Stephen O’Hare Read More »
Worldwide, everyone is impacted by the Corona Virus. Here are my suggestions for keeping or creating a routine so that you can continue to be successful in your lymphedema journey while adjusting to the changes. Keep your head up, we are all in this together, and together we will get through this!!
Photo courtesy of the TX LE&RN Chapter Amber, pictured above second to the left on the bottom row, was diagnosed when she was 13. Now, at 16 she is an active member in her High School marching band as a drum major and a french horn player. Check out the newest episode to hear Amber’s … Episode 49: Lymphedema Through the Eyes of a Teenager. Read More »
I have yet to meet another person whose compassion, kindness, and drive to help others matches that of Amy Rivera. Her heart never ceases to make room for others. As a young woman, she set out to learn more about her “big leg”, undiagnosed for more than 30 years this is her story. If you … Episode 48: Amy Rivera, Founder of Ninja’s Fighting Lymphedema Foundation Read More »
Brittany Williams is one fierce momma! After walking the long road of getting a diagnosis and appropriate treatment for her daughter, Brylan, she started a non-profit to help parents better navigate the same journey. Year around Brylan’s Feat Foundation provides resources and information to families of children with lymphedema. If you would like to support … Episode 47: Brylan’s Feat Foundation Read More »
Y’all! This is the final post of 2019! I cannot begin to thank you individually, but just know that each of you have helped to make this the best year yet! When I think back on this year my heart is full of gratitude, amazement, and excitement for what will come next year! This year’s … Episode 46: The Number One Most Listened to Episode of 2019 Read More »
Photo by Kelly Sikkema on Unsplash We are one episode closer to finding out who hold the number one spot on the countdown for 2019! Although, I didn’t have a guest this episode I knew it would be an important topic. From the moment I began thinking of podcast content this was on the top of my list. … Episode 45: #2 Episode of 2019 Read More »
We are officially in the top 3 of 2019 countdown! I don’t want to spoil who it is so you will just have to listen to find out! This guest has been an unexpected treasure this year. From Camp Watchme painting rocks, to meeting up at Lymphedema events in Boston and New Orleans. Thanks for … Episode 44: 2019 Countdown #3 Read More »
2019 is coming to an end. I want to celebrate the milestones of Lymphedema Podcast by counting down the top 4 episodes this year. Stay tuned every Monday until I reveal the #1 most listened to episode of 2019! Special thanks to my guests and all of you that subscribe or listen.
Thanksgiving is my FAVORITE holiday. It is no secret that I love cooking and hosting friends and family for any occasion…but Thanksgiving takes the cake! I wanted to share with all of you my suggestions for avoiding inflammatory ingredients this holiday season. Cutting these out will help keep the unwelcome bloat and swelling away for … Episode 42: Tips for Navigating the Thanksgiving Feast to Avoid Increased Swelling. Read More »
I hear this question all the time: why doesn’t my doctor know what lymphedema is? Today I lay out my 5 things I wish doctors knew about lymphedema. If you enjoy today’s episode please like, share and subscribe on your favorite podcast application or on the website.
Everyone has a story, this week I am tying up my Breast Cancer Awareness month series with Tina’s story. Her story may sound similar to yours, your mothers, or one of your friends. It may also be totally different. That is okay, too. Not everyone has the same experience with breast cancer and lymphedema, but … Episode 40: Tina’s Story Read More »
As October comes to a close, I want to leave you all with this final message concerning compression related to Secondary Lymphedema. Breast cancer related Lymphedema is a real thing. I urge you to find a Certified Lymphedema Therapist if you have been treated for breast cancer, are currently being treated or have just started … Episode 39: The Other Compression Garment Read More »
Josh Levin, President of LympheDIVAs, is a new friend of mine and I can’t wait for you to hear our discussion about reducing the risk of developing Lymphedema related to breast cancer. Check out the LympheDIVAs website for more information and to shop for a sassy sleeve. Ways to Reduce Risk of Developing Lymphedema after … Episode 38: How to Reduce your Risk of Developing Lymphedema Related to Breast Cancer Read More »
Welcome to October, it is my favorite month of the year–other than my birthday month. I love October because of the change of seasons, the temps start to drop, and leaves change colors. Other colors associated with October are related to the efforts to raise breast cancer awareness. You can hear my thoughts on that … Episode 37: Lymphedema Related to Breast Cancer Read More »
Jeannette Zucker, Executive Director of the National Lymphedema Network, joins me this week on the podcast to talk all things NLN Conference. The NLN has been a resource for the Lymphedema community since 1988 and this years conference is set to be unlike any before. I am personally excited as I will be presenting on … Episode 36: 2019 National Lymphedema Network Conference Read More »
Welcome back! Just as promised I am here “with the rest of the story!” My friend Cam Ayala is joining me today to discuss his experiences with dating while living with Lymphedema. His most recent dating history has been aired on National Television for all to see so I knew he would be up for … Episode 35: Lymphedema and Dating…from the Male Perspective. Read More »
Let’s face it dating is hard enough without adding in the stress of a chronic illness such as Lymphedema. Of course it is not limited to Lymphedema as others suffer from chronic illnesses that interferes with many aspects of life. Today my very brave new friend Alison is telling her side of the dating story. … Episode 34: Lymphedema and Dating…from the Female Perspective. Read More »
Enjoy my conversation with Allie about her blog, Loving Life with Lymphedema, as we talk about her journey to create her fashion blog. Her twelve years of experience with Lymphedema more than qualifies her to understand the struggles of trying to find clothing and shoes to fit her changing body. Check out her blog here … Episode 33: Loving Life With Lymphedema, a fashion blog by a Lymphie Read More »
As always I am constantly trying to bring each of you relevant information on Lymphedema treatment and management. There are so many questions surrounding surgery. Is it effective? Who is a candidate? What is recovery like? This is Kiersten’s story about her LVA surgery. I hope you enjoy learning more about her journey finding a … Episode 32: Kiersten’s Lymphatic Surgery Story Read More »
If you don’t fit into the category for “OTSG” off the shelf garments you may love this episode. While some of these resources are great for OTC garments they are also great resources for those needed custom garments that are affordable. Check out these websites to see which is best for you. Ames Walker: Follow … Episode 31: Compression Garment Resources Read More »
Some bandaging tips not included in this show that I share with patients regularly are… 1: save your money and buy cheap masking tape. It hold well and can fit on the butcher tape dispenser which makes life easier. 2: ALWAYS pre-cut your tape before wrapping. 3: Unroll the short stretch like a snail so … Episode 30: Resources for Bandaging Supplies Read More »
As promised, this episode is dedicated to Pediatric Secondary Lymphedema. Since Camp Watchme I have been researching, reading and reflecting more on pediatric lymphedema. Many of the parents at camp had so many questions that their doctors couldn’t answer or seemed frustrated about the lack of information available on childhood lymphedema. Primary lymphedema has more … Episode 29: Pediatric Secondary Lymphedema Read More »
I hope everyone has had a fabulos summer so far, I know I have! A few weeks ago I hosted the Inaugural Camp Watchme for kids with lymphedema in Oklahoma. It was life changing to say the least. Every parent, camper, and volunteer left a lasting impression on my life and I will not be … Episode 28: Inaugural Camp Watchme a Huge Success Read More »
October 2018, I presented at our local Rehab Conference in Texarkana. Originaly I intended to LIVE stream my presentation but decided to save it for a podcast episode instead. The purpose of my presentation was to give a basic overview of lymphedema, its causes, and how they could prepare themselves to help those in their … Episode 27: Rehab Conference Presentation on Lymphedema by Betty Westbrook Read More »
Lymphedema can be an overwhelming disease to process, learn about, and to create a routine for. It is especially overwhelming when a new parent or any parent of a young child has to do that while still trying to create a normal childhood for their kid. This episode is devoted to primary pediatric lymphedema to … Episode 26: Pediatric Primary Lymphedema Read More »
Welcome back for Part 2 of our International Lymphoedema Framework Conference review. Nancy and Kasey share their top 3 sessions, and their honest opinion of the conference.
Listen to two International Lymphoedema Framework Conference attendees give their honest review and session notes from last weeks conference in Chicago!
Today's podcast will help you better plan and prepare for traveling if you have Lymphedema or are traveling with someone who has Lymphedema. Flying causes a unique type of fear when travelling due to the pressure change. Road trips even short two or three hour drives can cause some anxiety about increase swelling and tightness. Often people won't even consider travel due to the headache they are trying to avoid. It doesn't have to be miserable to travel.
Summer Camp for kids with Lymphedema in the USA is HERE! July 18-21 in Oklahoma. Each camper is encouraged to bring an adult for a special Caregiver Retreat! Listen for more details or visit the website to register. www.lymphedemapodcast.com
Cam Ayala, LE&RN Ambassador, shares his lymphedema story in great detail. His shocking story is going to have you on the edge of your seat! As a fellow Texan he knows a thing or two about complications related to summer and shares great tips on how to beat the summer heat when living with Lymphedema.
This episode provides an update on the current status of the Lymphedema Treatment Act as well as three action steps you can take to support our bill!
Warning: This episode discusses sex and intimacy. Use caution when listening, more over where and who you listen with. Not a good time to invite your mother in law over...
Many women dream of becoming a mother. As I write this post it is Mother’s Day 2019 and I am reminded of this desire that I carry myself. But for many it isn’t as easy an just deciding “Okay, it’s time to make a baby.” Women who have lymphedema face a unique set of difficulties … Episode 17: Pregnancy and Intimacy Related to Lymphedema Read More »
There are exciting topics coming up for Lymphedema Podcast. But first, I want to revisit a couple of important episoes. What is Lymphedema? That is the number one question I am asked every week in the clinic. It’s the number ome question I am asked on social media. And it is the number one question … Episode rewind: What is Lymphedema? Read More »
Sometimes saying yes is easy, but most often it requires a leap of faith. Sharon’s experience in the fashion industry and her strong Christian faith lead her to where she is now. The first time I heard her story I was nothing short of speechless. As a Christian myself, I’ve seen and experienced this divine … Episode 16: Fashion for Lymphedema and Lipedema Read More »
This episode is short and sweet…literally less than 10 minutes. I did this for a reason. Many times people living with lymphedema hear a laundry list that is a mile long about things to avoid, specific garments to buy, or a certain lotion to wear…it goes on and on. It is a lot at once…heck, … Episode 15: Do’s and Dont’s of Lymphedema Management. Read More »
Episode 14 explains what (CDT) complete decongestive therapy and how each phase is unique. It is a good refresher for anyone who has been through therapy already AND an informative resource if you are new the lymphedema treatment.
Brad Smith is a Speech Language Pathologist who specializes in the treatment of head and neck lymphedema. He has been treating head and neck lymphedema patients since 2006. For ten years he was the lead therapist at MD Anderson’s HNL program until he relocated to continue his research and treatment of head and neck lymphedema … Episode 13: Head and Neck Lymphedema Read More »
Episode 12 is short, sweet and to the point. Don’t let the short episode fool you though, it is packed with 5 tangible steps to take to help you manage your lymphedema. None of them cost money (other than step two which involves seeking treatment) or have special requirements. Give it a listen and if … Episode 12: Five Steps to Help You Manage Lymphedema Read More »
To keep the momentum going for Lymphedema Awareness month, I am highlighting two patient stories on this episode. Amanda Sobey and Jennifer Bunch both courageously agreed to share their personal story of how they developed secondary lymphedema. This disease does not discriminate against age, gender or race. Anyone is at risk of developing lymphedema after … Episode 11: Secondary Lymphedema Read More »
Hopefully you were able to join us for our exclusive Facebook Live hangout last night! If not you still have time to go back and watch it. This mid week episode completes my interview with Vern on Primary Lymphedema. I truly hope you are encouraged by her story and find community in one of her … Episode 10.5: Primary Lymphedema, Verns’ story continued… Read More »
Primary Lymphedema is caused by a developmental malformation of the lymphatic system and is often hereditary or genetic. Families for generations did not know there was a genetic link to lymphedema only the physical resemblance from one generation to the next. With the advances in science and technology we now know of specific gene mutations … Episode 10: Primary Lymphedema featuring… Read More »
Champion. Advocate. Ambassador. Representative. No matter your preference we need your help to be an advocate for yourself and others. March is Lymphedema Awareness Month with March 6th being World Lymphedema Day. There is something transformative about using your voice to support and promote the well being of a community in such need of recognition. … Episode 09: Lymphedema Advocacy: The Lymphedema Treatment Act and How You Can Be An Advocate on World Lymphedema Day March 6th. Read More »
Lymphedema effects everyone a little differently. One thing I enjoy about my work is that not every patient will be exactly the same or require exactly the same treatment. Therefore I know that not every person who listens to this episode with be able to apply these tips to make living with Lymphedema easier. “I … Episode 08: Living with Lymphedema Read More »
Wounds can happen…a small scratch from the pet, a cut from bumping into furniture, or something more involved like a pressure ulcer. Either way it helps to be informed so that you can better prevent a wound or better heal the wound once it has been discovered. This is an exciting episode for the podcast, … Episode 07: Wound Care featuring Frank Aviles, PT, CWS, FACCWS, CLT Read More »
Everyone knows that exercise is “good” for our bodies but when you have Lymphedema there are a lot of questions . How much? When should I start exercise? What to avoid? Episode 06 breaks down some of the myths related to exercise and Lymphedema. New research has improved our understanding of the benefits related to … Episode 06: Exercise Read More »
Have you ever experienced redness in your affected limb and had a fever? Have you ever gone to the emergency room for a red spot that was warm to the touch and kept getting bigger? Did the doctors and nurses at the emergency room look at you like you were crazy or contagious? Cellulitis is … Episode 05: Cellulitis Read More »
Merriam-Webster’s pronunciation of Lymphedema: lymph·ede·ma | \ˌlim(p)-fi-ˈdē-mə Have you been told you have Lymphedema? Did you leave the doctors office thinking you heard what they told you but really it is all just a blur and now you need answers? Are you a friend or family member trying to educate yourself so you can help someone you … Episode 01: What is Lymphedema? Read More »
Happy New Year! Welcome to Lymphedema Podcast. 2019 is a blank slate and ready for you to make it the best year yet! Most people begin a new year by writing out resolutions to start a new hobby, change some bad habits or to lose some of the holiday weight. This year I am committing … Hello World! Get to know me, your host betty Westbrook, and I got here. Read More »