Learning to Love Your Lipedema Body

Emotional fitness is a big part of living with Lipedema, some days it can really be a challenge, so today I posted the following in our Facebook support group about learning to love your Lipedema body. It doesn't have to be all or nothing, some days you might feel on top of the world, and the next you are in tears, the support of others just like you helps a lot, and seeking out a support group that meshes with you is the first step. Here is a look at how I personally worked towards loving my body ...

I love British television, no drama, and everyone is nice to each other, The Great British Baking Show started it, but then I found others, like The Great Pottery Throw Down! 

I recently found it on YouTube, and blew through both seasons, but was excited to learn another season was currently ongoing; episode three just aired on YouTube last night.

I loved the illustration one of the artists did for Episode One (create a breakfast set with coffee press, two coffee cups and saucers and toast holder)... her name is Sampada Gurung, she is an illustrator (she has a series of these lovely illustrations, I want copies of them all), seeing our bodies represented in art lifts my soul so much.

What do you do for an emotional lift?

I found following fashion ladies with bodies that look like mine on Instagram (like Tess Holliday and Mustang Sally Two), and joining body positive fitness groups on Facebook (like Fit Fatties and Big Fit Girl), a huge help in starting to change how I felt about my body. One day the change exploded when a lovely woman in one of the bopo fitness groups commented on a video I had shared, with this super cute illustration of me. It brought me to tears, someone saw me lifting a heavy bag as inspiration to create art. I LOVE ART! And now I WAS ART! She goes by krissyrini on Instagram, and does super cute pet artwork, too. 

Then Kathryn Lynn Hack (an amazing artist friend who also has Lipedema) created art from my image, just about burst my heart with so much love. I ended up purchasing a piece she made as my 50th birthday present to myself, and it hangs on the wall in front of my vibration machine, so I see it every day and it reminds me that we are all beautiful. She is pure joy if you have not had the opportunity to see her work or hear her speak, seek it out. She was a presenter at FDRS a couple years ago, on their YouTube channel. https://youtu.be/Q6GutmAgPuE

That was the tipping point, when my Instagram feed was full of bodies that looked like me, rocking great fashion, and I was actually art inspiration, and loved looking at the creations these gifted artists made, it changed my life in that very moment. It is when I stopped being angry at my body, and started loving it. 

I guess you could say watching kinder, more gentle, television shows helped me to be kinder, and more gentle, with my body. And seeing all sizes be represented in fashion and fitness helped me to see my body as fashionable and fit! What we watch matters. What we allow into our lives matters. 

Top Fitness Items of 2019

My favorite fitness items purchased, gifted, borrowed, and found last year... and the good news is, I’m still using them all!

BEST PURCHASE = ASICS Sonoma GTX (gortex) winter running sneakers. I tried these in place of boots, since boots are so hard to find when you have Lipedema; they keep my feet dry, no slipping/falling, AND they don’t hurt my ankles!

BEST GIFT = Gonex Sport Dry Wet Separation (aka pool) Bag. Super lightweight, and has one side for wet clothes, suit, flip flops, and one side for anything you want to keep dry (compression, underclothes, makeup bag, etc.). It fits perfectly in the top section of the gym locker, too.

BEST BORROW = TRX Suspension Trainer. Great training tool for all levels of fitness. I like it for standing pull-ups and pushups, and excited to try more ways of strengthening my entire body with it.

BEST FOUND (IN MY OWN CLOSET) = Gaiam Resistance Cord. I won a gym bag full of fitness items at a conference years ago, I had been using the bag as my pool bag up until my gifted one from Coach this year, and one of the items inside the bag was a Gaiam resistance cord (also called resistance tubing) with handles. I can’t tell you how long it sat on the shelf in my closet, but I use it now to help strengthen my hip abductor and adductor muscles in an effort to improve my gait. It can also be used for upper body work.

What are some of your favorite fitness items that you use all the time?

FYI: not sponsored, just my personal POV.

Are Moisturizers Safe to Use with Compression?

I get asked about compression garments all the time, and one of the questions I get asked is...

"Do body lotions & creams

break down compression?"

Well, that depends on your garment.

My compression garments are 100% safe to use with body lotions & creams, because I wear Juzo garments and ALL JUZO GARMENTS ARE LATEX FREE!

Garments made with elastic (rubber) can be damaged by wearing lotions & creams, so you will have to check with the manufacturer of the garments you wear to see they are latex free.

Some say to be safe just do not use lotions or creams when wearing compression. But as someone with Lipolymphedema (primary Lipedema with secondary Lymphedema) that is not an option.

Compression is used to help with edema, and moisturizers are used to keep the skin as healthy as possible, because it gets stretched and becomes fragile, so dry skin is not an option, even the smallest break in the skin can make you more prone to skin infections like cellulitis.

My daily routine includes moisturizing my legs and wearing my compression garments.

There are many moisturizer options, some of the ones members in the Lipedema Fitness Facebook group like are:

• Aveeno
• Coconut Oil
• Eucerin
• Lubriderm
• Lymphoderm
• Medi Comfort Cream

Comment below with your favorite and why.

We Have Come Full Circle

It is hard to believe that six years ago those newly diagnosed with Lipedema were being advised to NOT exercise, as doctors thought it would make our symptoms worse.

Six years later and new members of the Lipedema Fitness Facebook support group are telling us their doctors recommended they join our group!

That is huge progress! We are changing how Lipedema is treated!

Keep fighting for your mobility, keep spreading awareness, and keep being awesome! We are stronger together and we are changing how Lipedema is treated and hopefully we learn even more next year and get to some real answers and one day maybe even a cure!

An Insurance Code For Lipedema?

I was excited to see the ICD-11 codes were presented at the World Health Assembly in May 2019, then I discovered they are scheduled for adoption by Member States to go into effect on January 1, 2022.

So I did some research on the ICD-10 codes. 

Did you know they were presented in 1990? 

Do you know when they went into effect in the US?  October 1, 2015.

That is not a typo, 25 years later.

I found out the closest current code for what I have, Lipolymphedema (stage 3 Lipedema with secondary Lymphedema), E88.23, while being used in Germany, is not an option here in the US.

The closet code we have here in the US is E88.2, and it went into effect in the US on October 1, 2019.

This link provides more info: www.icd10data.com

Snow, Sleet, and Slush - Oh My! (Finding Footwear for Lipedema Legs)

Today was 28 degrees in lovely upstate NY, and it brought with it snow, and freezing rain. Schools had a two hour delay, and it took me about as long to scrape my car windows before venturing out into the winter wonderland.

Don't get me wrong, I absolutely love winter. I marvel at the grace falling gently all around me, covering everything the eye can see, and making it look like a fairy tale. At 50, I still find snow absolutely magical.

What is not magical is trying to find footwear for the winter.

Lipedema tissue at my stage 3 (also known as Lipolymphedema) begins at my ankles (typically called an ankle cuff), and it can be very painful to the touch, so footwear has to stay below that area.

In the past I have opted for Lands' End or LL Bean style slip on mocs, but this year in my search I came across multiple articles about winter running shoes.

Here is a recent article from Runner's World that includes their editor's top picks. But it also mentions that some brands will offer a GTX version of their top shoes (GTX = GoreTex).

So maybe just try your favorite sneaker and see if it comes in a GTX model. Check some options in this article by Solereview.

I think I might be checking out one of my favorites (Asics) and their Gel-Sonoma 4 GTX...

Asics Gel-Sonoma 4 GTX

Some other options are adding things to your existing shoes, like ice/snow cleats or galoshes.

UPDATE: I picked up the Asics Gel-Sonoma 3 GTX winter runners after writing this article in November, the 3 is last season’s color that looks very similar, and saved me some money, too. I have been wearing them ever since, and recently exclaimed to my husband best purchase this winter! They are stable like a lifting shoe, and warm like a boot, and my feet stay dry. We went downtown and walked all over for a community winter festival, and while my husband’s feet got cold, mine stayed warm. Now it is not like putting your foot in boot, with faux fur, lining, etc, it is still a sneaker, but for me it works. Here is a link to my Instagram post showing the ones I purchased... https://www.instagram.com/p/B5AoKJnFwH7/?igshid=u2y0i8s2az75

Would love to hear what you choose, or what you rely on in the winter!

How Do I Begin Moving with Late Stage Lipedema?

Living with Lipedema means we all have, and deal, with pain in various ways. It can be so painful, that to even move a little bit can be a huge challenge.

We know being active is key to staying mobile or getting mobile, so WHERE DO WE BEGIN when things like walking or rebounding are too painful?

We start with where we are currently at physically. 

We don’t focus on what we cannot do, WE FOCUS ON WHAT WE CAN DO RIGHT NOW.

Think about what your body can do physically that doesn’t cause added pain. It doesn’t matter what those movements are, maybe it is ankle pumps, or raising your arms, or making a fist. 

Really think about what your body can do and make a list of those things. Post your list where you can see it, and try to do those movements every day.  Maybe keep track of how often you do them and what you notice changing in your body when you do them, after you do them, at the end of a week, a month, etc.

You might feel like you are so far from where you want to be, but we cannot make positive changes thinking like, so WE START BY THINKING POSITIVE.  I can do X, Y, and Z right now, so I’m going to do them more.

Take a moment right now, and make a fist if you can. Think about the movement, what it feels like to tighten your hand. Notice what it feels like to engage those muscles in your hand, then focus your attention to the muscles in your wrist, your lower arm, your upper arm, then into your chest, and into your abdomen; engaging all those muscles. 

When you release your fist, feel the muscles release and relax; feel your lymph fluid moving, flowing, maybe tingling. That one small hand movement engaged so many muscles. 

Think about that, it is amazing what your body just did, and that was doing it one time, making one fist. Imagine doing it with both hands, and multiple times throughout the day.

Be mindful of each movement, be engaged, see what you notice. Keep track of sensations and changes.

Maybe you can’t make a fist without pain, so what can you do?

Can you rotate your wrist with fingers open? Focus on that sensation, how the muscles work together. Can you raise your arm up a few inches and still do it? How about a few inches more? Do you feel the muscles working in your hand, your wrist, lower arm, upper arm, shoulder, back?  How does the sensation change as you raise the arm up? Does it feel the same as when you do the motion while lowering the arm?

Little movements are like dropping a pebble in a lake, the effects ripple through your body. Then as you add more reps, or more movements, you will see more strength developing, and more flexibility and range of motion.

Even if we are working on arms because our legs are too heavy, too painful, we change our lower body, too. Because that new strength in our upper body assists us in moving our lower body. As you build upper body strength you can use that to help turn your body while laying in bed, or to help you get up out of bed more securely.

Then if you are able to get up more securely, we can begin doing that movement more frequently, which then can help us get stronger in our legs, and then we can start walking more securely, and before you know it that fist you made has you more mobile.