The LS Xpandanista

Does the average person give much thought to socks?  I guess it depends on your needs. Most need socks for warmth.  Runners and hikers for sure benefit from good socks.  Some people just go and get the cheapest they can find and wear them until they have giant holes in them.  I’m not naming any names.  To someone with either bilateral or unilateral lymphedema, socks all of sudden become very important  Namely, finding a pair that will fit even if just to cover bandages.  I want to talk about this photo and why I decided to partner with Xpandasox and donate to LE&RN in doing so.

I have primary bilateral lymphedema.  I’m also one of these people that has to match, especially at the gym.  People close to me have made fun of me over it.   Vern, the formerly with two sock drawers sock junkie, that’s me.  It’s just I just loved fun and funky socks.  Before I could not fit into them, I had all kinds of colors and types for the gym and athlesiure wear.  That pretty much ended in 2010.

Until now.

In January 2016, I was diagnosed with truncal lymphedema after having it in my legs for 22 years.  As stated before, it seemingly appeared out of nowhere for no rhyme or reason. Maybe I’m lucky in that it only presents so far in my back and along my ribs. I have had no trauma to my back.  My doctor did a CT scan and MRI, but no root cause was found. What we do know now is that people with primary Lymphedema can have it appear anywhere or in multiple regions of the body.  Lee (my nickname for lymphedema) just decided to take room upstairs in my body without asking and no notice!!

What does this really mean for me?

For the rest of my life I will never be naturally thin in the torso or have normal looking legs or ankles.  At least not without a significant amount of time, COMPRESSION, complete decongestive therapy, manual lymphatic drainage, pumping, exercise, insurance, medical bills, and other lymphedema toolbox tools to sustain.

I will repeat the beginning of that first part again.

FOR THE REST OF MY LIFE…

Yes, a life sentence because we all know that lymphedema currently has no cure. For all those with LE, we want the ending to that sentence to change. We want it to say For the rest of my life until a cure is found,” or “For the rest of my life until a medicine is found” for LE.

Please, No More Future Lymphies

When I was 20, lymphedema appeared in my right foot.  Today, I want to not have to look at my 23 yr old son’s legs every single day and wonder if he too will inherit this from me. Yes, I often talk about my father but he’s passed on. I have a son too, so I’m looking ahead to the future.  It also could very well present in my brother!  Who knows!  Beyond my immediate family, I have cousins with daughters that are approaching that age or adolescence. One will be 15 next weekend.

To summarize, I do not want my family looking at a 4th known generation with LE!!

The thing is, I don’t just want this for me and my family. I/WE want this for the millions worldwide that need a cure too.

So what does all of the above have to do with a bunch of socks?

LE&RN

One of the organizations trailblazing for research is the Lymphatic Education & Research Network (LE&RN).  Most notably is the clinical research being done for secondary LE here recently that may have future benefits for those with primary too in the form of a pill.  It’s only through continued research that that relief will happen for me and my family, and I hope it happens in my lifetime. Through research I was able to get a Flexitouch jacket for my truncal LE even though I’m primary and the product was not initially designed for my specific case. It was designed for people with secondary LE from head and neck cancers.

Lymphedema has run in my family for at least 112 years. The cycle must STOP.   And while we may not be able to completely eradicate it, at least we can work on improving the quality of life and decrease the amount of maintenance required.

Xpandasox

Xpandasox was a product I tried earlier this year when I was in CDT.  I first learned about the socks through the LE&RN Expo.  For years, I had been telling my Dad that short stretch bandages should come in colors and prints the way casts now come in colors.  I wanted Dallas Cowboys colors.  Ha!  Well, the next best thing to that is animal print expanding socks!  When I first saw these socks, my inner Lymphie goddess did a happy dance.

As a woman with lymphedema for over half my life, I want to thank them for creating this wonderful product in fun, gorgeous colors and styles. Finally a pair of socks that can stretch over my bandages.  When I told my friends that I was excited about these socks, they didn’t “get it,” but I know those of you reading this blog post do.

One evening I wore the zebra socks with shorts and a pink summer top to dinner with my family. It began to rain. Not only did I walk into a restaurant with full confidence, but I was happy that my bandages were covered from the light shower and not get dirty. No one batted an eye at my socks.  Xpandasox also donates socks to the homeless as part of their Sock Bank initiative.

Knowing that Xpandasox is a supporter of the LE community as part of LE&RN Expo and believes in research and education too makes it an honor to post it on my blog.

I don’t have all the answers, but I’m hoping for a better future.  All I know is that we can try to make a difference together in prayer, faith, and most importantly action and awareness.

Live in your strength and #MOVETHATLYMPH!

Wishing you great lymphatic health,

Vern

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