Friday, May 13, 2022

IN MAY WE WEAR STRIPES


May is EDS (ehlers-danlos syndrome) awareness month. I have hyper mobile EDS or hEDS. It is a connective tissue disorder that for me = easily dislocated joints. I have to be extra mindful in how I move, especially during training. 

The zebra is the symbol for the Ehlers-Danlos Society. Why? Because in the 1940s a doctor coined the term “if you hear hoofbeats, think horses, not zebras” when teaching new students. Meaning don’t look for the rare diagnosis.

Great when teaching, not great when you actually have a rare disease. So I love how they claimed the zebra and wearing your stripes in May to help spread awareness!  I love clever ♥️🦓

hEDS is a common comorbidity of Lipedema, so it is far from rare to a lot of us.

Thursday, May 12, 2022

7th Annual Lipedema Triathlon - June 25, 2022

It is OFFICIAL!!!

JUNE 25 is the 7th Annual Lipedema Triathlon!

Locally being hosted by the Saratoga Regional YMCA - thank you!

But this is a virtual event and you can participate from anywhere! Ask the YMCA in your area if you can do it there, at your local pool, or even in your own backyard.

This event was created in an effort to spread awareness for Lipedema, and the importance to keep moving and challenging ourselves.

It is all-inclusive, meaning you can choose your level of involvement (do one lap, one mile, one leg of the race, or the full TRI, whatever your fitness level).

Triathlon races vary in distance, the one we are focusing on is the Sprint: 
  • 750-meter (0.47-mile) swim
  • 20-kilometer (12.4-mile) bike
  • 5-kilometer (3.1-mile) run/walk

Thank you to our Sponsors this year: The Saratoga Regional YMCA, Juzo Compression, and Lympha Press. Juzo and Lympha Press sponsored the official Race T-shirts / Water Bottles for the first 50 registered participants! Once all the orders are placed, we will see how much funds we have left for the next round and will be contacted in the order of registration signup, so don't miss out...

The current round of signups can be done here (please use a reliable email so we can contact you if funds are available for more shirts/water bottles:

Here are some of the 2021 Lipedema Triathlon Finishers! It is an international event, with participants from all over the world! Such a great way to spread awareness of Lipedema, and the importance of staying active!


Thursday, April 14, 2022

Emotional Overload: Preparing for the FDRS Conference

I'm preparing to travel with my family to Cleveland, Ohio next week. It is for the 2022 FDRS Conference, where I have been given an amazing opportunity to be a speaker, sharing how finding balance while living with a chronic illness (Lipedema) is so important.

We spend a lot of time talking about how important staying active is with Lipedema, and it is the main focus of the support group and work I have been doing since 2013. But there is a huge emotional/mental health component of living with a chronic illness, which is equally as important to focus on.

The Living with Stage 3 Lipedema live series I started with Crystal from CFitRevolution has been focusing on the emotional/mental health side for the past several months because it is a topic not really addressed in the community much.

It is easy to understand why it is not addressed, it is challenging living with a chronic and progressive condition; spending your life always pushing forward, maintaining self-care, staying active, and trying to stay positive in your efforts to slow progression. It is a daunting task.

If we think too long about the journey we are on, we can stall. We can start down that path of what-ifs, we can focus on not seeing improvements (even if we can feel them), we can let the exhaustion set in, and it all can build up and take us out emotionally. So, we tend to not focus on those things. 

But by not discussing them, we can live in silence alone, and become overwhelmed and that is a scary place.

The trick is to talk about them, acknowledge the emotions, and work on them, but don't live in them. Finding ways to slowly release the pressure building up along the way. It doesn't have to be all or nothing. We go back to our motto of all of something.

Lately, I've been off. I chalked it up to regular personal life stuff, work stuff, new year stuff, pandemic stuff, etc. All of which are part of it. But I also thought maybe I'm thinking about the emotional stuff too much, and that itself has me staying in the emotional place too long?

We have learned so many good tools and tips the past few months during the lives, from our special guests: Linda-Anne Kahn, Beth Sabo Novik, and Karen Windsor. Each sharing ways to help address the emotional side of living with a chronic illness. Click their names to be taken to the replays.

This morning it came home for me, an understanding into my "feeling off" emotionally. I miss my friends that I have lost over the years, fighting the progression of their Lipedema.

One friend, Katia Page, AKA "The Lipedema Queen" (that name suited her to a T), I met in 2014 at my very first FDRS Conference. She was amazing, had just had one of multiple surgeries for her Lipolymphedma and then got in a car and drove to DC just to be at the Conference. We even walked the runway, showing off the latest in compression that Yvonne Russell brought to the conference.

Katia was a huge advocate of spreading awareness of Lipedema, the importance of staying active, and feeling beautiful. She was gorgeous, and her laughter could melt away any worry you might have.

She would reach out to me privately and we would talk about such amazing ideas she had on spreading awareness. . .

  • A fashion queen, she reached out to stores to get donations for Lipedema patients, so they could feel beautiful in new fashionable clothing, she had photographers come to every event and have fashion shows, and she even setup makeovers with Sephora. 
  • A fitness queen, she was always in her favorite New York Sports Club pool, and in 2017 invited several of us to join her for an AquaRun 1K event. I had no idea of what that even looked like, but she did - and it was fun. She was always fun.

The Lipedema Queen’s - 2017 AquaRun Warriors

As I make my plans to travel to the 2022 FDRS Conference, I can hear her laughing from up above, "knock their socks off girl, you got this". Katia would not want me staying in the emotional place too long, she would want me fighting!

I am looking forward to the conference, I cannot describe the feeling of walking into a room full of people who 100% understand what you are going through. I am planning on loads of hugs from friends I've only spent time with over zoom. It will be absolutely amazing.

I am honored to be a speaker. To share my patient perspective. But it comes with great responsibility, too. Sharing what I have learned over the years, and what (who) I have lost, a delicate balance of physical and emotional healing. 

But I know I have angels on my side, watching over me, over us - cheering us on! Together we are stronger. Hope to see you in Cleveland, and beyond!

Tuesday, April 12, 2022

Flat Knit vs. Circular Knit Compression

When I first heard about flat knit vs. circular knit, I was oblivious to my Lipedema condition, and the graduated compression I would need to wear for the rest of my life to manage it.

I heard these terms many years before my diagnosis when I was learning how to knit. 

The easiest way to learn how to knit is just that, the knit stitch (vs. pearl, but that is a post for another day, and another blog). The easiest tools when first learning to knit are straight needles, which will produce a flat knitted garment, think scarf.

Straight & Circular needles
But once you learn the stitches, and you have made a scarf (or 12), you start dreaming of making hats, mittens, and socks, and you get introduced to circular needles, and what is called knitting in the round. This becomes faster and easier for a lot of knitters. No sewing the pieces together, it comes off the needles seamless.

So, how does all this knitting talk tie in with graduated compression?

Well, thankfully we don't have to knit our own compression garments, we have specialty vendors to make them for us, and just like knitting, they can produce either flat knit (custom) or circular knit (off the shelf) options.

So, what are the differences?

Micro-massaging

Circular Knit - 

  • Comes off the machine in a tube (Seamless)
  • Off the shelf product (comes in ready-to-wear sizes)
  • Can buy online (once you know your size)
  • Available in fun colors/patterns
  • Thinner, and moves well when active
  • Can be tricky to fit if you have lobules
  • Not good to sleep in, can bind and cause damage

Flat Knit - 

  • Comes off the machine flat (like a piece of fabric)
  • Custom made to your measurements (will have seams)
  • More rigid
  • Thicker
  • Less likely to bind (hurt) at knee and ankle creases
  • Higher containment
  • Safer to wear at rest

When I was first diagnosed in 2007, the options were custom (flat knit), where they take your measurements and specially make your garment, or off the shelf (circular knit), where you take your measurements and match it up to a vendor’s size chart. 

Custom are expensive, mine were close to $1000 for one garment (full foot to waist), which for me, insurance did not cover. I purchased once, and found it not tolerable for me. It felt very restrictive, I could barely walk in them, and when I did they felt like they were pulling me down (physically and emotionally). I tried having them cut into thigh highs and a short, which was a lot better, much easier to get on, but the thigh highs did not stay up, so again, an issue for walking, let alone a workout. I opted for the off the shelf (thankfully my measurements fell within the parameters, and they were more like $90 a pair (for knee highs). The knee highs are good for about 6 months, mine are Juzo dynamic model, and I can wash them in a washing machine and dry them in the dryer. They are latex free, and laundering them brings them back into shape. While I don’t have coverage under my insurance for them, I can purchase on an FSA (medical flexible spending account through my husbands employer).

Later on new micro-massaging garments started coming out. They are not as much compression,12-18mmHg (compression is measured in millimeter of mercury) vs. my knee highs which are 30-40mmHg, but have a special weave that helps to move your lymphatics when you move in them. I add these (I buy the bioflect line) to my knee highs for all my workouts, the are ankle to just under my sports bra, and they are easy to squat in. 

The combo works for me, and that’s the most important takeaway, find what works for you, even if that means going a little lower on the compression strength to be able to do what you want to do, wearing something is better than wearing nothing.

The latest technology I’ve seen is adding FIR (far-infrared therapy) to the micro-massaging garments,  There are special minerals woven in, that works with your body heat to go deeper, claiming it can help with joint and ligament and muscle pains, and so much more. Fascinating stuff to investigate into more. 

Micro-massaging garments are circular knit, you take measurements and apply them towards the vendors size chart to know what to order (off the shelf).

Compression is a huge part of caring for Lipedema and Lymphedema. A couple years ago I had the pleasure of touring Juzo’s headquarters and seeing firsthand how compression is made, after you witness all the work that goes into a single pair of knee highs, you understand the cost, I just wish insurance companies would do the right thing and start covering them. 

Wednesday, April 6, 2022

You Are Your Own Best Resource

With Lipedema we have learned over the years that we all present differently with symptoms, and we all respond differently to treatments. We have learned by personal trial and error.

We share to spread awareness, to hopefully help others be diagnosed sooner than we were, and we share how we are personally treating our symptoms and the things we find that help us, in the hopes it may help someone else.

I am not a doctor, I am not a CLT, nor am I a personal trainer; and even if I was any of those, I am not yours. I do not know your body, your symptoms, how you present or how you will respond..

Even all the amazing doctors, surgeons, CLTs, personal trainers , etc. who share about Lipedema are not your personal doctor, CLT, etc.

You have to learn about your body, your symptoms, and treatments that work for you. You have to take ownership in your care.

What you see online is information and ideas for you to investigate for yourself, to talk to your doctor, your CLT, etc. about. 

You have a responsibility to protect yourself. Take in what you learn, and investigate if it sounds good to you - and please ease into anything new.

Be weary of anyone who says this is what you must do, if it worked for me it will work for you, if I can do it you can. 

That’s not how lipedema works, that’s not how life works. It is your one body, and you need to do the work to learn more about it. Learning what works for someone else is great, and people sharing has helped change how lipedema is treated, but you are still responsible for your body.

Tuesday, March 15, 2022

The Vagus Nerve: What is it, and why is everyone talking about it?

I don’t know about you, but lately I keep hearing about the VAGUS NERVE. 

So I decided to look more into it, and try to find out what all the hullabaloo is.

Basically the Vagus Nerve is referred to as the body’s superhighway, it brings information to the brain from the organs, and here’s the kicker, and why it is everywhere… more recently they discovered this highway goes in both directions, and the Vagus Nerve can also deliver info from the brain back to the organs, and actually change how they function!

You can stimulate the nerve (scroll down to see 3 free ways) and by doing so reduce stress, ease pain, and it is said even reduce inflammation!

Improving vagal tone is the goal, and doing things like deep belly breathing, singing, chanting, or taking a cold shower (or even splashing cold water on your face) can help.

By taking a few moments to stimulate your vagus nerve, you reduce stressors and if you are like me, one of the key spikes in my Lipedema symptoms is stress, so this all makes perfect sense to me. 

Do you have a favorite way to improve your vagal tone? Yoga, meditation, deep breathing? Laughing and singing are great options, and when I sing out loud I tend to laugh, too! Win win!



Thursday, March 10, 2022

Lipedema Fitness: Finding Strength

When I needed to find strength, needed to start taking my life back, I looked for strength, not just of body, but of heart.

We find strength outward and we learn to bring it inward. 

What we see, what we hear, what we do, we become.

When I joined Instagram I sought out strength, specifically strong women - crossfit women, then I wanted to see strong big women, and slowly my feed became about strength. 

It is what I needed. It is what helped me, take back my life.

Since I started on the peloton journey, I started following trainers and coaches I enjoyed riding with. All for various reasons, but all with heart in what they said during class.

This is Christine D’ercole, her mantra “I am, I can, I will, I do”, she is a favorite Peloton trainer of mine for so many reasons, this post she shared is a perfect example…

https://www.instagram.com/p/Ca3Je9qLZgj/?utm_medium=copy_link

Seek out what you need, maybe it is healing, maybe it is peace, maybe like me it is strength. Open your thoughts about what that means to you, maybe something someone said once, maybe a scene in a movie, dig into what you need and then start finding it, following it, listening to it, watching it, submerging  yourself into it until you absorb it, become it, for yourself ♥️ then share it.


March is Lymphedema Awareness Month - and March 6th was World Lymphedema Day. As part of the celebration, and to help spread awareness, I setup a #worldlymphedemaday tag on Peloton, and setup this recovery ride with Christine, it was perfect. Tapping in to deep breathing, flushing our legs, healing, etc. All things to make us stronger on the inside.