May 2014. My life forever changed. I woke up one day and my left ankle seem to have disappeared.
Two weeks prior I had been on vacation in Cancun, Mexico. 12 hours before we left Mexico I went scuba diving at Aquau World, then flew home. Initially I ignored the swelling because, let's face it, when you're on vacation you're relaxing and eating more. I had a few fruity drinks. Just a few.
As the weeks went on, I started panicking inside because I knew in my heart something was seriously wrong because the swelling was getting worse every second of every day. After pondering over it for 3 months, I decided I needed to see my doctor.
I had some lab tests done and they were all perfectly normal despite my swelling. I was tested for the parasite bite you can acquire in Mexico. Negative. Next stop, Nephrologist. I was tested for everything under the sun. Still normal. By this time I am REALLY panicking and now sobbing. My left ankle looked like it had a half a baseball attached to it. My last thought was "is this hormonal" so I called my gynecologist. She agreed to see me right away. She asked me a few questions and then said "I think you have lymphedema."
Of course being a nurse I had heard of this before but had no clue the magnitude of the condition. The next day I saw a CLT who sent me to get a lymphoscintigraphy study done at The University of Iowa Hospital. Before I made it back to the highway to get on the exit ramp to begin my journey home my phone rang. My CLT said your lymphoscintigraphy is abnormal. Your diagnosis is exactly what we thought it was.....primary lymphedema!!!
I think I was in shock and I don't even remember the drive home. The only thing that kept running through my mind was PROGRESSIVE, INCURABLE, and FOREVER. it replayed in my mind over and over. Complete decongestive therapy then began. As they started treating my left leg the lymphedema moved to my right leg also. So now I have bilateral lower extremity lymphedema.
Two years later I am still learning everyday. My skin is so sensitive and everyday is a struggle. Too much compression. Not enough compression. This material. That material. BUT....I am alive. I have 2 legs. I am able to keep exercising although not able to be a long distance runner like I had been, I'm still pushing myself everyday. My advice to anyone is TAKE YOUR LIFE BACK! Even if you cannot do everything the same, TRY as much as you can. I felt hopeless and doomed letting the words PROGRESSIVE, INCURABLE and FOREVER haunt me every second of everyday.
NOW, I continue working full time as a cardiology nurse. I'm an active wife and mother of 3 children and 2 fur babies. I am an active member of 2 online support groups for lymphedema, a member of The National Lymphedema Network, a member of LE&RN, an advocacy member for The Lymphedema Treatment Act, and a patient trainer at Tactile Medical. I travel around and teach patients how to operate their Flexitouch pneumatic compression pumps. I write letters to Senators and Congresspeople. I attend town hall meetings asking for their co-sponsorship in passing the Lymphedema Treatment Act.
This has been a big beautiful mess but has taught me so much. Doors have closed. Doors have opened. Find your blessings, not your sorrows. Attitude of gratitude!!