Greetings from the Pacific Northwest! My name is Lisa Milton: Wife, Mom, Dog Wrangler. I’ve taught Zumba® and other fitness formats in beautiful Eugene Oregon for about six years. Before that I sold books, and wrote a blog, and worked with small children with special needs. I’m 46 years old. I have Primary Lymphedema in my left leg.

What triggered the LE? We’re still not sure. As a young woman, I had experienced edema in my legs when I traveled, and had tremendous swelling near the end of both of my pregnancies and into the first few months of motherhood but these concerns were dismissed by medical professionals. Luckily, the puffiness would resolve in time, and I would forget about it as soon as my chunky foot could get back in shoes again. In 2011, this pattern changed. I taught a Zumba class before taking a two-hour drive to visit family. On my drive home, my calf grew larger, and began to ache. After several ultrasounds and many appointments, all days before Christmas, we knew three things: I had an asymptomatic Baker’s Cyst, no blood clots and a big, baffling leg. I am a medical mystery. Years before I was diagnosed with Sjogren’s Syndrome after I developed severe nerve pain and arthritis – not the typical presentation – and soon after I added Eosinophilic Esophagitis to the list. None of these conditions come with a fix or cure. I kept seeing doctors. I waited.

Next up? A vascular surgeon. He poked and prodded, and etched pits in my leg before I saw the proverbial light bulb go off in his head: You have lymphedema! The rest of the conversation was a bit of blur. He sent me on my way with a prescription for OTC compression garments and a warning: ‘Don’t google it. You aren’t going to get elephantiasis. And don’t stop moving!’ What? Of course, I googled it. I knew nothing about this diagnosis. I took it all in stride and kept teaching, determined I would figure out a way to manage my condition. I found my active lifestyle helped resolve the congestion my calf, and kept my spirits up. Other days were not so bright. I wasn’t very good at advocating for myself, and taking proper care of my leg.

I live in a smaller town, and there weren’t too many options for treatment. I relied on dance, cycling and the pool to move lymph, and paid close attention to my leg when traveling. I was inconsistent with my use of compression but in fairness, I didn’t have any sort of plan in place. I winged it, even after tearing my medial gastrocnemius in early 2014, ‘prescribing’ myself deep water jogging days after the injury to keep the inflammation down while I recovered.

In 2016, my world shifted again in two ways: I became a LIVESTRONG at the YMCA instructor, and began working closely with cancer survivors – many with lymphedema – and my own LE inched its way up my leg, and into my knee and thigh. I am grateful for this work as it is meaningful; I love working alongside people as they rediscover themselves after cancer. I am also thankful because I met an oncology physical therapist that was willing to see me, and after four years of swelling I had my first Lymph Drainage Massage.

Lymphedema is frightening. I fuss over what to wear, struggle to be comfortable, and worry if I can continue working in this field. After taking a year off, I recently went back to teaching Zumba. It’s a small commitment, but when the music is on, my heart is full. Sometimes I compare myself to other instructors, and must remind myself that it is a waste of time. I am a work in progress, and it shows. I still haven’t found the right compression for me. I’ve had serious, blistering reactions to the silicone on some thigh highs, and more recently, neuritis (I have polyneuropathy) has made compression in my foot extremely painful. The PT has noted a little edema in the right leg, and it breaks my heart to imagine the disease spreading. (I have been pushing the thought away all year.)

Yet, I am on my feet, and moving forward because I am chronically motivated. I teach a strength building class called Reclaim Strength for others that have been thrown a medical curveball, and together we laugh and grow stronger, and find joy in what our bodies can accomplish. This is no small thing. I am passionate about helping others find their path, and by doing so, I have found my own. Every day we can move is a gift. And I plan on making the best of it.

Some tips/favorite solutions:

  • Advice: keep your sense of humor, MOVE, and rest. Eat well. See if dietary changes help.
  • Trust your own instincts.
  • Get thee to the pool.
  • Compression, Tropiceel skin products, elevation, meditation, MLD.
  • Traditional Chinese Medicine makes everything I do possible. (Acupuncture has saved my bacon.)
  • Tip: If you have LE in your leg, avoid dangling it in high chairs at restaurants. The dangle is a doozy.

I am practicing radical self-care these days, imperfectly. I still struggle to speak up when I need downtime or to put my leg up, but I’m getting better at it. I’m gaining stamina, and resilience. It’s a good place to be.

Instagram: @muchtomysjogren


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