2016 NY Walk to Fight Lymphedema & Lymphatic Disease


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.


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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Starting a new chapter — and owning who I am while doing it

FullSizeRender(1)Just over a month ago I made the jump from DC to NYC (for the second time) — without a job! This is the third time I’ve moved to a new city without employment, and I’m happy to say that I started my new job last Tuesday. It’s only been four days into the job, but so far I am incredibly happy :)

On day three of my brand new job surrounded by my new colleagues I was desperately trying to impress, I did something I didn’t think I would have done (or at least not that soon): I wore my stockings with a dress. You see, I had already chosen the outfits I wanted to wear in my first week at work (gotta dress to impress!). Nowhere in these outfit plannings, though, did I include stockings (it’s hot here and I hate wearing stockings in the summer, and especially hate to wear them with dresses, and ESPECIALLY didn’t want to stick out at my new job).

That and it was only one year ago I wore exposed stockings to work for the first time; one year ago I wore stockings with something above the knee; and less than one year ago I wore a dress with stockings at work for the first (and only) time. It may be glacial progress, but at least it’s progress.

After day 1 and day 2 on the job NOT wearing stockings my legs were really unhappy with me. Day 3 I had a choice to make:

1. Wear my original outfit without the stockings and continue to see a decline in my legs

2. Wear stockings, but change my outfit to include pants so as to conceal the stockings

3. Go with the original outfit AND wear the stockings

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A bump (or pothole) in the road

Yesterday I was watching a TV show in which one of the characters has a chronic illness. While trying to empathize with another character, he said something that struck a nerve with me: I know what it’s like when it feels like your body is failing you.

I instantly felt this trigger some strong emotions that I had clearly kept buried deep, down inside.

It hit me…hard.

I got a little teary-eyed in the moment, but it wasn’t until I was cooking up the lazy single lady’s dinner of pepper and mushroom egg scramble that I let loose. I wailed. I stomped my feet. I yelled profanities. Thank god the loud hood fan was turned on and music was blasting from my iPhone otherwise I’m pretty sure my roommates would have thought I’m even crazier than I am.

In this blog I have shown you strength, I have shown you determination to overcome. I have shown you courage and insight. I have shown you acceptance. I have shown you positivity.

But goodness, y’all, I’m only human.

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What if?

What if I break a bone?

What if I cut myself while shaving?

What if my swelling gets worse and never goes back down again?

What if everyone stares at me when I wear stockings with shorts? Or a skirt?

And what if they’re thinking what a freak I am? What’s WRONG with that girl?

What if I’ll never be beautiful enough to find a mate?

What if I never find my soul mate because I was too afraid to let down my wall?

But what if I do let down my wall and my heart gets broken because the compression stockings and the night garment and the pump are just too much for him?

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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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August Challenge Recap

~ There are many healthy habits I’d like to develop and since I love a challenge (and some structure), I thought I’d give myself a new challenge every month. They say it takes 21 days to develop a new habit, but I thought I’d round it out with a whole month. Some challenges will be directly related to lymphedema, and some won’t. But they will all be with the end goal to make a healthier me. I’d love for you to follow along and update me on your progress! ~

For my August challenge I decided to do the manual lymph drainage self-massage every day.

How did it go? Well, not as expected.

My first approach was to do the full massage, which takes me about 10 minutes. Really the only time I could even attempt to consistently do this is adding to my bedtime routine.

Immediately I realized that the routine took too long. So, I shortened the massage to about 6 minutes. Much more manageable!

But even then, I still couldn’t do it consistently. Either I consciously was too lazy to, had already put on my night garments and didn’t want to take them off, or I completely forgot. Yes, I managed to let it completely slip my mind on multiple occasions.

I tried using an alarm on my phone. That didn’t work because I wasn’t always ready at the same time every day.

I tried posting some obnoxiously bright sticky notes on my night stand to remind me. That didn’t work either.

So, in a last-ditch effort I made a deal with myself: every night I can either do the self-massage before bed or wear my night garment.

The result? I learned I would much rather wear my night garments 😉

What I learned is that I just couldn’t add one more thing to my nighttime routine. Heck, I can barely floss every night. So, I’ve landed on the above-mentioned deal — either the self-massage or the night garment. So sometimes I do the massage, but more often I prefer to wear my night garments.

Why did I make that decision? Because I firmly believe that lymphedema treatment is about tailoring the tools in your lymphedema toolbox to your needs and preferences. For me, self-massage isn’t really my thing. But that’s OK, because there are others tools in my toolbox — compression garments, night garment, pump, exercise, nutrition, elevation.

Did you participate in the August challenge? Do you regularly do the MLD self-massage? Is it one of the tools in your toolbox?