Wednesday, November 27, 2019

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!

Thursday, November 21, 2019

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

Tuesday, November 12, 2019

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!