World Lymphedema Day
On March 6, 2023, I had never heard of lymphedema or World Lymphedema Day, yet I was mere days away from exhibiting symptoms. On March 6, 2024, I was just getting over denial about the diagnosis and out of hiding. Check out the short video I filmed around that time. Today, I'm proud to celebrate lymphedema and help to spread awareness about this chronic condition. Thank you all for your support.
What is lymphedema?
Lymphedema is a chronic condition that causes excessive swelling due to a defect in the lymphatic system. When lymphatic fluid can't circulate back to the heart, it causes swelling and a feeling of heaviness and achiness in the impacted limb or area.
Patients can be born with lymphedema (primary lymphedema) and the symptoms may present themselves right away or manifest later in life, typically after age 35. Patients may also develop lymphedema after lymph nodes are removed (such as in cancer treatment) or due to injury, infection, or other causes (secondary lymphedema).
Who does it affect?
The World Health Organization estimates that about 250 million people around the world have lymphedema. Lymphedema impacts an estimated 15% of all cancer survivors and up to 30% of breast cancer patients. Source: Lymphatic Education & Research Network (LERN).
How is lymphedema treated?
There is no cure for lymphedema. Patients generally manage it with:
Manual lymphatic drainage (MLD), a specialized type of physical therapy for the affected limb or area. Some patients, including me, use a biocompression boot or sleeve to simulate MLD.
Wearing compression at least 22 hours a day
A healthy diet because weight gain exacerbates lymphedema.
Regular exercise, particularly walking if the lymphedema is in the lower extremities. I walk for an hour every day to get the pump on my foot activated and the lymph moving.
There are also some surgical options, but only a few surgeons across the globe and not everyone is a candidate. No surgery will "cure" lymphedema, only alleviate the swelling or limb bulkiness.
For how long have I had lymphedema?
I began to experience symptoms in March 2023 and was officially diagnosed in June 2023 when I was 42 years old. However, looking back, I experienced minor symptoms in my 20's and 30's. For example, the top of my foot would swell up when I wore high heels, almost like bread rises as it bakes. But the swelling always subsided after I rested my feet -- and no longer than overnight.
What were my symptoms?
In October 2022, my left foot began to hurt and swelled up. I attributed it to a hike weeks earlier but had no idea what had happened. I went to physical therapy and it was 100% back to normal within a few weeks. I completed physical therapy in January 2023 and my foot and ankle were strong and pain-free.
In March 2023, I took an 11 hour flight. I wore a light compression sock because I knew I was prone to swelling. When I got off the plane, my foot was the size of a football and although the swelling has alleviated, my foot and ankle have never returned to normal. I don't know if the injury in the fall was the cause, but the flight certainly wreaked havoc on my lymphatic system.
What is like managing lymphedema?
Lymphedema has changed my life in more ways than I can recount here. Suffice it to say, managing lymphedema is a full-time job without any breaks. When I wake up, I take off the cap covering my toes, the bandages that are wrapped from my foot to my knee, and the foam inserts around my ankles. I immediately put on a super tight toe cap and custom compression sock with built-in foam inserts. I only take them off to shower, but I have to wear a cast bag over my foot because the hot water completely exacerbates the swelling. After I shower, if I have time, I use a biocompression boot that simulates MLD.
But that's just the physical logistics. Lymphedema is mentally and emotionally taxing. It impacts my overall sense of self. I'm now a person who experiences constant discomfort and manages a chronic condition. I had to ditch 95% of my shoes (no more heels) and much of my wardrobe (goodbye any knee-length dress, shorts, or leggings with tight ankles). In these two years, I have come a long way physically and mentally thanks to an incredible community of support and, as of last summer, the ability to transition from wearing bandages 24/7 to a custom, knee-high compression sock that allows me to wear (comfortable) shoes.
I'll close with a short story to demonstrate. Last year, a dear friend was appointed to the federal bench and I was invited to attend his investiture. Immediately, I wracked my brain for what I could wear to cover the compression sock while looking professional. (I am grateful I otherwise work from home and this isn't a daily struggle!) I selected a knee-length navy dress and, to cover the sock, black knee-high boots with a stacked heel. I drove 1.5 hours to the courthouse in Trenton. Rain was in the forecast and humidity was in the air -- never a good sign for swelling. About an hour in, I had to unzip my left boot and partially remove my foot because the sitting caused my foot and leg to ache and swell.
Once I arrived, the courtroom was packed and I couldn't immediately find a place to sit. Many attendees were standing in the back. I panicked, realizing if I couldn't find a seat, I'd have to sit on a bench outside and miss the ceremony because I can no longer stand for lengthy periods of time, particularly in those boots. Luckily, I found a seat while chatting with the other attendees. After the investiture, there was a cocktail hour in the courthouse lobby. I left after 15 minutes because I couldn't bear to stand and there weren't any seats. After getting in my car, I unzipped and took off my left boot. Due to the rain, it took me over two hours to get home and my foot and leg were on fire.
Despite this and so many other struggles, the emotional roller coaster of having this chronic condition has allowed me to find gratitude. I have met exceptional people on this journey; I never thought I'd be a part of this community, but they've welcomed me with open arms. I can move my body freely and have no physical limitations. I am otherwise young-ish and fit, so I can exercise. I have the resources to eat healthy and obtain the treatment and compression garments I need.
If you're curious to learn more about my lymphedema journey, check out Own Your Story: Empower. Connect. Create Change. I wrote about what I learned about authenticity when life throws you a curveball. All proceeds go to support women's empowerment events.
Stay tuned here for more on my lymphedema journey….
Did you enjoy this blog? For more of my content, sign up to receive my blog, personal and professional development tips, and book reviews! Follow me on Instagram and LinkedIn, and kindly use the social sharing buttons to share this blog!
