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My Lymphedema Story

A little over a year after finishing cancer treatment for the first time, I was in physical therapy working to rebuild the strength I had lost during my year of chemotherapy and radiation when my physical therapist noticed my left leg seemed a bit larger than the right. The difference was slight, but noticeable.  Fearing it was a blood clot, I visited my primary care doctors, but there were no other indications of one, so that cause was ruled out. After close to a month of elevation and rest, the swelling in my leg still had not gone away. With a good amount of research and consultations with my oncology care team, it was decided that I probably had lymphedema. I got measured for my first compression stocking soon after that, and began to wear it every day. Embarrassed by its appearance, for the next few years I only wore clothing that covered it, but it was at the expense of my comfort. Not even some of my closest friends knew about my lymphedema and compression, and even in 90
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Recent posts

Exercising & Activewear

I have heard over and over again from providers that compression works best while exercising and moving. I’m honestly not sure if it makes a big difference for me, but regardless, staying active is extremely important for all around health. As someone with physical disabilities, my exercise options are a little limited, but I have still been able to find activities that I have grown to love. The first is swimming . I am lucky enough to have had a swimming pool in my backyard my whole life. As such, even before cancer, swimming was something I really enjoyed and did all summer long. I joined my high school swim team a year-out from finishing cancer treatment and swam competitively for the next three years.  The thing I love most about the water is that many of the limitations I experience on land aren’t there in the pool. When I was recovering from my hip surgery, I couldn’t walk without crutches for a little over a year, but in the water I could swim freely and rebuild some of my stren
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The Distract Factor: Dress on your own terms

One day at an appointment with my oncology team, my NP mentioned that even though my legs are different sizes, you would hardly ever notice due to parts of my outfits that would catch your eye first. It was kind of a strange compliment, but it was also kind of true. A lot of my outfits have a trademark “distract factor” that actually help in drawing attention away from my swelling. My legs might be visibly different sizes, but who’s going to notice that when there’s pom-poms on my pants?! Or funky red Dr. Martens boots on my feet?  The purpose of this post isn’t to make you feel like you need to draw attention away from your swelling or compression though. Rather, it is to encourage those who think dressing as neutrally as possible is the only way to hide their lymphedema to still have fun with their fashion.  You don’t have to focus on blending in just because you have swollen legs or arms; you still deserve to express your style on your own terms. Even with lymphedema, you can dress
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Shoes: Balancing Lymphedema & Leg Length Discrepancy

You may have noticed from previous posts and picture that in addition to dealing with lymphedema in my left leg, I also have a leg length discrepancy of 2+ inches.  Between the size of my extra-swollen foot and internal and external shoe lifts, my family and I like to joke that I’ve got a lot going on in my left shoe.  For a while after my hip surgery that led to my discrepancy, I was able to get by with just an internal lift in high top sneakers or boots. As my discrepancy increased beyond an inch though, it became clear that I needed something more.  Over the past year, I have spent a lot of time working with an orthotist and my doctors to come up with a functional shoe-lift design. There have been many failed attempts and moments of frustration, but I recently had a boot with a sloped lift done, and although it’s not exactly perfect, it is the most functional of any other design I have tried by far.  Aside from my boots, I have a pair of New Balance running sneakers with a built-up
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Dressing Up

When dressing up for more formal events, there are a lot of options for covering-up your compression. Plus, with most attendees wearing similar short dresses, you might even out-dress them with your different but fashionable look. For parties or other casual events, I typically wear a dress or skirt with tights underneath. If tights aren't really fitting in with my outfit, though, I sometimes just embrace my visible compression. Long dresses are perfect for proms and dances, but often can be a bit hard to pull off or are too fancy for less-formal events. Jumpsuits are a great alternative to long dresses. In my opinion, they look upscale without being overly dressy. For last year's prom, I wore a floor-length dress like many of my classmates, but paired it with Doc Martens as opposed to heels. This year I was planning on wearing a jumpsuit to prom and a long dress to an awards ceremony, but all end-of-year events were canceled due to the Coronavirus pandemic. When it comes to mo
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Cheat Days

Like someone on a diet taking a day off to eat junk food, I call the times I go without compression “cheat days.”  Perhaps it is just a couple hours out of the house where I want to wear a specific outfit without my compression. Or maybe it is just a one-day break from the time consuming and exhausting daily management of my lymphedema. Whatever the reason, it can be healthy for your emotional well-being to take a day off from compression every once in a while.  However, it is very important to note that you should have confidence in your control of the situation before taking a cheat day. Try to resist the urges to go without compression if it will hurt you in the long-run. I have a pretty good feel for my limits when it comes to my swelling. I know that I can use lymphedema management techniques to return to my baseline size after a few hours up and about compression-free, or the span of the day if it’s particularly low-key.  Additionally, for every cheat day you take, I recommend tr
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Beachin' It

Being in a pool or the ocean can feel very freeing as a lymphedema patient; since water provides natural compression, no garments are needed. The problem, though, lies in the time spent out of the water. When spending several hours at the beach, any time spent out of compression can quickly catch up to you. To stay on top of swelling, it is important to continue wearing your garments. For trips to the beach, I recommend wearing a toeless compression stocking if possible. This allows you to wear flip flops and roll up just the foot part if you want to feel the water without going all the way in.  If you do go in the water, it is best to wait until the end of your trip to the beach, as it is extremely difficult to get back into compression afterwards, and it is important to limit the time out of it.  Personally, I find that I have foot circulation problems and nerve pain when wearing purchased toeless compression stockings. However, I cut off the toe of an old stocking, and put clear nai
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Summer Staples

My first few summers with lymphedema, I wore skinny jeans all summer long. Needless to say, in 90+ degree weather, it did not go well. Over the years, I have become much more experimental and creative in finding a happy medium between comfort and style. A few years ago, I discovered wide-legged women’s pants made in lightweight materials available at stores like TJ Maxx, Marshalls, and Old Navy. Also sometimes referred to as “flowy pants” or “beach pants,” this is a much cooler and more comfortable summer alternative to jeans. With a wide range of colors, patterns, and styles, these pants can be worn for casual recreation, such as a trip to the beach or the park, or for a formal occasion. While it may seem like shorts are not a possibility for those who are embarrassed by their compression, wearing tights under shorts is a cute and simple summer look. I recommend starting with solid colors like black, navy blue, and grey, but I also love to mix it up with prints. My favorite pair of ti
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