2016 NY Walk to Fight Lymphedema & Lymphatic Disease

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Yesterday (for the third year in a row) I participated in the 2016 NY Walk to Fight Lymphedema & Lymphatic Disease. The walk benefits the Lymphatic Education & Research Network–an organization based in NYC that promotes education, research, and advocacy for lymphatic disease.

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LE&RN is a fantastic organization that is working hard to raise awareness about lymphedema. Below are a few of the highlights of what they’re doing:

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A Lymphie’s Guide to the Workplace

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Ever since I graduated from college I’ve had the standard 9-5ish desk job. Translation = I spend at least 8 hours a day sitting at a desk. At one point it was more like 10 hours, but thankfully currently it’s a pretty solid 8.

We’ve all heard about the health hazards of sitting, but why is it harmful for lymphedema (particularly lower extremity lymphedema)? As I’ve mentioned before, the lymphatic system is twice the size of the cardiovascular system yet does not have it’s own pump (the cardiovascular system has the heart). So, the lymphatic system relies on help from outside sources: this help primarily comes from muscle movement that pushes the lymph through the body and gravity (when used to your advantage) encourages lymph fluid to be drained.

I’ve found that sitting has three major negative effects on lymph fluid flow:

  1. Creates blockages: One of the largest collections of lymph nodes are found in the groin. When you sit, the lymph nodes in your groin are compressed and a bent hose effect inhibits the flow of lymph fluid from the legs to the stomach (you know when you bend a hose and the water stops flowing? this is a similar idea).
  2. Gravity, gravity, gravity: When you sit, gravity works against any chance your lymph fluid had at getting from your toes to your stomach.
  3. Prolongs immobility: This last one is quite simple–when you’re sitting, you’re not moving. The more you move, the more you help lymph fluid flow through your body.

Through my years in a desk job, I’ve learned a thing or two about how best to manage my lymphedema. It has certainly been a game of trial and error (I seem to improve my approach with each new job) and I have yet to perfect my toolbox. So, please share your ideas! For now, below are one lymphie’s best advice for navigating a desk job:

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Me & My Compression Stockings

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Fair warning this post is long, but hopefully helpful! The following are my two cents on compression stockings after wearing them for 10+ years. It’s my experience with them and while I think I have a few useful things to share, please do not take this as a be-all, end-all. Every person with lymphedema has different needs when it comes to the size/compression/brand/model/etc. of compression stockings (and you should always seek out the advice of a professional before ordering a pair). As always, this is just my story, but I hope that it can help you figure out your own :)

Compression stockings, compression stockings, how I love to hate thee.

I definitely have a love/hate relationship with my compression stockings. On the one hand I hate wearing them because I feel like I’m wearing medical socks on my legs and I don’t feel normal, but on the other hand they work — compression stockings for me are by far the most effective tool I have in my lymphedema tool box.

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Progress, people, progress!

Good news! I wore my stockings with clothing above the knee for the first time since my diagnosis 12 years ago!! Still baby steps for me — I was running errands so I rocked the super colorful I just went to the gym and don’t care what I look like look. But I hadn’t actually been to the gym that day. Details, details…

Super proud though that I wore the black stockings! Really only because the beige were dirty…haha

I walked proudly, strutted my stuff, and returned home unscathed. #dramaqueen

As each day goes by since starting this blog I’ve become more and more confident with being me and just not caring! I’ve worn my beige stockings several times in the last couple weeks (in fact, today!) with cropped jeans. #sorrynotsorry

Don’t know about you, but I’m pumped!! This is all so invigorating. Learning to not care is just the most relieving life lesson for a worry wart like myself.

Next step is wearing my stockings with a dress to work…stay tuned!


Have you been strutting your stocking stuff? What’s the latest outfit you’ve worn showing off the goods?

 

Wearing lymphedema proudly

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Last week when Miss Idaho Sierra Sandison proudly wore her insulin pump on her bikini in the 2014 Miss Idaho Competition, she not only inspired those with diabetes, but she inspired me. There are  many medical conditions where the treatment is not always so easy to hide — whether it be an insulin pump, a colostomy bag, or compression stockings.

When I was first diagnosed with lymphedema and the swelling was only in my right leg, I was much more nonchalant about wearing my stocking with shorts or a skirt. But once the swelling was in both legs and I was a full-fledged, super self-conscious high school student, I wasn’t so willing to advertise my stockings.

Ever since then the only time I ever wear my stockings is under pants. Full-length, fully opaque pants. It wasn’t until recently that I have even felt comfortable putting on/taking off my stockings around others. I always get the funniest questions about the gloves I use to put them on (gardening gloves) — have to laugh about those!

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Shortly after reading about Miss Idaho and her insulin pump I stumbled across a couple of blogs about some ladies (also in their 20’s) with lymphedema. They posted the following pictures that I found so inspirational I just had to share (I hope you don’t mind, Lauren and Alexa!):

The first is the blog Lauren: That’s Swell and her Twitter page Lymphoedema Fashion.

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The second is Alexa’s blog, The Lymphie Life.

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When I saw these photos, I have to admit my jaw dropped. YOU GO GIRLS!!! They’re both so proudly wearing their bandages/stocking, even in shorts and a dress. Couldn’t believe it! To Lauren and Alexa — you have no idea how inspiring this is to see!!

As my I build my self-confidence and pride in my story, I hope to one day be as brave as Sierra, Lauren and Alexa.


Tell me how you wear your lymphedema proudly!