Fourteen years ago, I had a total hysterectomy due to uterine cancer. It took another frustrating four years to be diagnosed with lymphedema from the waist down in both legs.
I have been lucky to have a competent health team, good health insurance, and very understanding family and friends. Even so, I have struggled to find a balance in my life. Just over three years ago, I had my first bout of cellulitis. It came at a point when I thought I had figured out how to work fulltime and manage my lymphedema. I was so excited to get a “real” life back and I looked forward to being a financial help to my family. Instead, I had to retire five to ten years too soon. I still think of that point as the darkest time of my life.
However, there was a silver lining in that cellulitis cloud. I got counseling. I found a massage therapist that specialized in lymphatic care. I found a local company that professionally fits my compression garments. I found LE&RN. I heard Kathy Bates tell her story. The combination has helped me find a balance in life, where lymphedema is not defining me. I am learning to live with lymphedema.
About a year ago, my husband and I camped our way through Southern Utah in our Eurovan. It was a bit daunting planning for this trip because I knew I had to manage my lymphedema around dirt roads, pit toilets, hiking, biking, and daily bathing with baby wipes. Much to my surprise, I not only survived, I enjoyed myself. This was the type of trip where every day was the best day. But there was one day that I felt extremely proud of myself.
We hiked down from the Hole in the Rock Road to Lake Powell. This is a 500-foot climb down, crawling around boulders to the reservoir. It was a beautiful day and no one was around, so we decided to skinny dip. Yes, I took off my compression pantyhose and splashed around in the water. My husband cleaned off a rock so I could put my socks back on without getting wet, or picking up any sand. Then, we walked back up to the Eurovan.
Excuse my bluntness, but I was pretty f*^#ing proud of myself that day. Like Kathy Bates said, dealing with lymphedema made me feel like I was punished for getting cancer. But, through the support of my family and friends, along with the information becoming more available about lymphedema, I am learning to find a balance. Thank you to LE&RN for all you are doing to support those of us with lymphedema.