Lori's Story and What is Lipedema - Episode 1

It's finally out! Episode 15 of the Spotlight Lipedema is out - featuringPart 2 of my interview with Beth Rylaarsdam. This was a great conversation about how CurvyGirlBeth made her debut. We talk about how lipedema ladies tend to hide from picture or hide themselves and their legs in pictures and why Beth thinks that needs to change. How do we share knowledge of lipedema when we encounter people that appear to have it too. 

Find Beth Here:

https://thecurvygirlbeth.com/links/

 Instagram: https://www.instagram.com/curvygirlbeth/

Facebook: https://www.facebook.com/Curvygirlbeth

TikTok: https://www.tiktok.com/@curvygirlbeth

All Music courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php

It's finally out! Episode 14 of the Spotlight Lipedema is out - featuring Beth Rylersdaam - Curvy Girl Beth. It was a great conversation - so good that we just kept chatting. So here's Part 1 of our conversation all about Beth's Lipedema discovery and what she's done to manage it.

Stay tuned for Pt. 2 where Beth talks about how she became Curvy Girl Beth.

All Music courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php

This episode is a bit different than what we've done before. I had the chance to speak with Dr. Guy Eakin, the Chief Science Officer of The Lipedema Foundation. Dr. Eakin provides some background on the Foundation and the work they are doing to provide funding for lipedema research.

In our conversation, we learn a bit about the main areas of research that are the current focus of The Foundation, what projects they have recently funded, and some of the areas of research that appear promising at this time. We also talk a bit about the challenges of the research and why developing tools for the diagnosis of lipedema is so difficult.

And finally, we talk about how those of us with lipedema can contribute to lipedema research.

Lipedema Foundation LInks:

Home page: https://www.lipedema.org/

Lipedema Foundation Registry: https://www.lipedema.org/registry

How to Find a Specialist: https://www.lipedema.org/findspecialists

Lipedema Brochures: https://www.lipedema.org/brochure

Foundation Blog: https://www.lipedema.org/blog 

Innovative Solutions for Lipedema & Lymphedema Symposium 2021 Registration: https://learn.lipedema-simplified.org/holisticsymposium-oct2021

Intro Music "Walk in the Park,"
Bumper Music "Folk Bed" and
Closing Music "In the Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php

It's June and that means it's Lipedema Awareness Month. I hope that you will be taking advantage of all the events that will be occurring online to educate us and the general public about lipedema. There's too much for me to list here, but you can use these links for information on these events:

From Lipedema Simplified: Lipedema Awareness Month Webinar Series 2021 (mykajabi.com)

From Lymphapress: Mind, Body & The Matrix: The Role of Pumps and Other Therapies for Lipedema -  Webinar Registration - Zoom 

Lipedema Patient Roundtable: Webinar Registration - Zoom

Webinar: Comprehensive Treatment for Lipedema: What You Can Do - Webinar Registration - Zoom

In the midst of the Covid crazy, I had the chance to speak with Nita Clewis. We spoke about finding peace with our diagnosis and our challenges, while at the same time, continuing to meet those challenges through self-care. How do we stay focused on self-care in a crazy world - especially as we try to get things back to something that resembles normal.

Nita goes over what her daily self-care routine looks like, and how she keeps herself motivated to do it every day, while I try to not beat myself up too much for not doing everything I should be doing. I'm sure this episode will strike a note with many facing lipedema and everyday self-care challenges. If you like more words of wisdom from Nita, you can find them on her blog - The Whole and Balanced Living blog at https://www.facebook.com/WholeBalancedLiving.

My cockatiels tried to join in the conversation too, so I apologize for the distraction. With or without them, I think you'll find Nita's advice helpful.

I also discuss the recent release of the U.S. Standards of Care for Lipedema. Other countries have had such guidelines for years, but the US has just released our very first guideline. This is really important stuff to read and to share with your medical providers. Worth noting - lipedema is being reclassified from a "fat disorder" to a disease of the loose connective tissue. This can really help how the medical community perceives the disease and hopefully will lead to more money for lipedema research and better health insurance coverage. You can find an abstract and link to the report here: https://journals.sagepub.com/doi/10.1177/02683555211015887?fbclid=IwAR3Stk9_GHF7JEbUTdRs40D01FTGRhswjczcLD2zJX4TYo3_Z3cjGSKOTzc

All podcast music courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php

The Spotlight Lipedema Podcast is back for a quick episode to catch up with what's been going on and to let you know that we're still here - Getting ready for Lipedema Awareness Month in June.

Intro Music "Walk in the Park," 

Closing Music "In the Field,"

courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php

Well, this was a jam-packed episode! I had the chance to talk (and kind of geek out) about some of the science behind lipedema and the lymphatic system with Leslyn Keith. One of the things you realize when you have lipedema is that there is a lot to learn about adipose tissue, the lymphatic system, and how to manage lipedema and lipo-lymphedema. I got the chance to ask Leslyn some questions about the lymphatic system, about the function of fat in the body - and why we need to eat fat. We discussed one of several eating plans followed by people with lipedema - eating ketogenically. Ketogenic eating focuses on eating protein and fat, and keeping carbohydrates very low. Many people, including people with lipedema, find that this way of eating helps reduce or minimize inflammation in the body. This way of eating won't necessarily work for everyone - based on individual food sensitivities and health history, but it is definitely worth exploring.

Links to Leslyn and things we mentioned in the podcast.

1. Leslyn Keith Website: www.leslynkeith.com
2. Lipedema Project: www.lipedemaproject.org
3. Lipedema Simplified: www.lipedema-simplified.org
4. Living Well with Lipedema Mini-podcasts: https://player.whooshkaa.com/shows/living-well-with-lipedema
5. Dr. Ben Bikman: https://lifesciences.byu.edu/directory/benjamin-bikman
6. Dr. Bikman's Organization, InsulinIQ: https://www.insuliniq.com/
7. Dr. Stanley Rockson's lymphedema and lipedema biomarker study: https://insight.jci.org/articles/view/135109
8. Website for Lipedema researcher Dr. Natasha Harvey: https://people.unisa.edu.au/Natasha.Harvey
9. Quality of Life Research for Lipedema by Dr. Joanna Dudek: https://pubmed.ncbi.nlm.nih.gov/26216585/
10. Survey of Lipedema Woman Report - "New Insights on Lipedema: The Enigmatic Disease of the Peripheral Fat": https://pubmed.ncbi.nlm.nih.gov/31764671/  
11. International Lymphatic Disease and Lymphedema Patient Registry and Biorepository: https://lymphaticnetwork.org/living-with-lymphedema/researchers-need-you
12. Ketogenic Solution for Lymphatic Fat Disorders Virtual Symposium Registration: https://masterclass.mykajabi.com/ketolymphcon2020/

Relevant Facebook Groups:

Keto Way of Eating for Lipedema: https://www.facebook.com/groups/LipedemaKetoWOE/

Lipedema - The Disease they Call Fat: https://www.facebook.com/groups/lipedemabookdiscussion/

Lipedema/Lipoedema Simplified Support: https://www.facebook.com/groups/LipedemaSupport/

Keto for Lipedema Worldwide Summit Tribe: https://www.facebook.com/groups/ketolipedematribe/

InsulinIQ (Dr. Ben Bikman): https://www.facebook.com/groups/insuliniq/ 

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Intro Music "Walk in the Park," and Closing Music "In the Field," courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php

In the lipedema world, Carol Nogueira is lucky to be one of the ones to discover her lipedema when she was still at stage one. That doesn't mean that discovery was without its challenges. We also talk about how it can be overwhelming to get this diagnosis and how it becomes part of our identity. Carol also talks about how she figured out that she had lipedema and then her experience finding a surgeon to help her try to keep it there. Listen to hear about her lipedema journey that has taken her to be one of our community's Lipedema Advocates.

Show Links:

Carol Nogueira Links:

F*Lipedema Blog: http://fucklipedema.com/
F*Lipedema on Facebook: https://www.facebook.com/F-Lipedema-110806687363274/

Lipedema Articles on Medium: https://medium.com/search?q=Carol%20Nogueira

Change.org Petition to cover liposuction for lipedema: http://chng.it/nGFHWb7R?fbclid=IwAR1cey5LAhY59qv4IWaGa0BRuUnrFke0VEANid-1blQURO-qEgJaNAsRUcc

Lipedema Awareness Month Links: 

1. "Lipedema and Lymphedema: Mythbusting and Case Controversies" featuring Dr. Karen Herbst, Dr. Steven Dean, Dr. Thomas Wright and Dr. Tony Gasparis. https://tactilemedical.com/learning/
    
2. The Lipedema Channel on YouTube  features multiple videos with a couple of Lipedema Roundtable discussions and interviews with Lipedema Patient Advocates https://www.youtube.com/c/TheLipedemaChannel/videos
    
3. "New Insights on Pathophysiology and Treatment of Lipedema" with Dr. Karen Herbst and "The Psychosocial, Clinical, and Dietary Impacts of Lipoedema," with Dr. Catherine Seo, Dr. Matthew Carmody, and Dr. Leslyn Keith. https://www.lympha-press.com/blog/
    
4. CurvyGirl Beth Lipedema videos https://www.facebook.com/pg/Curvygirlbeth/videos/?ref=page_interna
    
5. Lipedema Foundation Brochures: https://www.lipedema.org/resources
    
6. Carol's Petition for Insurance Companies to cover lipedema treatment: https://www.change.org/p/blue-cross-blue-shield-insurance-companies-need-to-cover-liposuction-for-lipedema-other-medical-needs
    
7. Carol's Blog: fucklipedema.com
    
8. Carol Nogueira on Medium: https://medium.com/@thecarolnogueira

Spotlight Lipedema Music

Intro Music "Walk in the Park," 
Bumper Music "Folk Bed" and 
Closing Music "In the Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php

Today we talk about surgery. Are you thinking about liposuction for your lipedema / lipoedema? Does the thought make you nervous that you don't know everything you need to know. My conversation with Maria Kokkinou Boege may give you some peace.

We start off talking about Maria's lipoedema journey, then move on to the fabulous Facebook group she has put together. A support group where women share the experiences searching for the right surgeon and then their surgery successes and challenges. The group also provides a wealth of resources on how to get you ready to make that decision and what to do as you prepare for surgery day.

Here's the link to this private, patient-only Facebook group:

https://www.facebook.com/groups/mylipoedematreatmentjourney/

Thanks to Maria for setting up the group and for taking the time to join me for this podcast episode.

All Podcast Music is courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php

Well, this episode took some time coming. Technical issues and a injury to my arm made getting it together a bit of a challenge, but hey, we finally got it done. 

In this episode, we talk briefly about June being Lipedema Awareness Month, then move on to my conversation with Selena Chronister. She may be familiar to you if you have visited her YouTube channel, "Selena Sez" where she has instructional yoga videos that are made specially for women with lipedema. If you haven't found it yet. Here's the link.

https://www.youtube.com/channel/UCTm9CAiKtmcYm0X1j2qrDEQ

Music courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php

Well, this episode was long in coming out. Sorry for the delay. I have to admit, I've been pretty focused on the news about the coronavirus, and that slowed down the process a bit, but I'm back on track now.

This project may sound a little be choppier than normal because it is the first one I've done mostly by myself, with some assistance from my wonderful producer Chris Duckman. My goal has been doing this on my own without having to pester him too much, so I am on my way.

To start things off, I talk a little bit about grief and how we experience grief as a part of getting a lipedema diagnosis - and that is okay. It is totally normal. We just need to recognize it and not let it get to us too much -  and figure out what we can do to deal with it as time goes on. It will get better, even if it's a bumpy road to peace of mind.

Then I talk about how I've adapted to being mostly homebound in the last couple of years and what I am doing to try to make things  continue to improve. It is definitely a challenge in the best of times, but even for someone who doesn't leave home very often, coronavirus days have been a challenge.

Then the episode wraps up with another visit with Pattie Cornute where she talks about how she is adapting to working out at home now that she can't visit the gym or pool for a while. She's got some great ideas on how you can adapt your workout - or maybe (like me) start working out at home.

I hope you enjoy it.

Links from this episode:

1. Lymphatic Yoga with Edely Wallace https://lymphaticyoga.net/
2. Lipedema Fitness Blog: http://www.lipedemafitness.com/
3. Dr. Melissa Gallagher's alternate rebounding video: https://www.youtube.com/watch?v=UCCMSdNnJKo

Intro Music "Walk in the Park," Bumper Music "Folk Bed," and closing music, "In The Field" all courtesy of Jason Shaw at Audionautix - https://audionautix.com/index.php