Image from: By Medical doctors (Own work) [CC BY-SA 4.0 (https://creativecommons.org/licenses/by-sa/4.0)%5D, via Wikimedia Commons
How cliche right? Might be a better title if I could add second cousin twice removed. Ha Ha. What did it take to get a 16 year old compliant with wearing compression? It took meeting a 35-year-old woman who had Primary LE that started when she was 14 too.
Shortly after my only hospitalization from cellulitis, my mom arranged for me to meet her cousin’s wife. They lived out of state and would be back in Iowa and willing to meet us at my grandparent’s house with nobody else around. (As a kid I didn’t realize my mom was talking about LE to her mom and siblings) I wasn’t that keen on the idea, but I didn’t really have a choice. (Remember back in 1994 the internet wasn’t what it is today. You couldn’t google Lymphedema and see images like the one above.) I had no clue how bad Lymphedema could be.
So we traveled to where my grandparent’s lived and met this couple in my grandparent’s living room. I don’t remember her name anymore. But I will never forget her. She had on big flowy pants because she could no longer get her left leg in jeans. She showed me the pump that she used ( I wouldn’t get a pump for another 19 years), the foam wedge she slept with under her leg. She hiked up her pants and showed me her leg.
I was horrified! How is it possible for one leg to be normal and the other to be so large? How did you live life without sweatpants and jeans? At the same time, I wouldn’t want to show off one huge leg and one regular. She was very nice. She was also the only other person I had met who had Lymphedema. I was scared. Was I doomed to have the same fate? How could she move, I could tell it was hard for her.
After meeting this wonderfully kind woman, who was willing to share her experience with me, something in me changed. I realized that what I did with my leg now as a teenager could affect me for the rest of my life. I knew right then and there that I would do everything in my power to make sure my leg never looked like that.
I became compliant about wearing compression most of the time. I didn’t wear it to the pool or when I worked out (I did not know at the time that you should wear compression for all activity that is on land). I wore compression to my high school formals with long dresses that would hide the knee-high under my pantyhose. I was still at stage 1 with my lymphedema, so my swelling went down almost completely every night. If I wanted to go to church without compression on, I didn’t swell too bad (yet, now if I am up for even 5 minutes I feel my leg start to swell).
I am assuming now, as I reflect on this brief encounter, that this was meant to help me learn more about lymphedema, but also as an intervention to get me compliant with wearing the ugly knee high. I don’t know if my mom realizes to this day how profound of an impact that one meeting would make on the rest of my life.
I thank my lucky stars I was athletic, happened to be a swimmer, and that my mom arranged this encounter back when taking care of my LE was pretty easy. Without these things I don’t know what my leg would look like today.