I found a wonderful man, while I was in college. He didn’t care that I had a lifelong disease, and he was crazy enough to want to marry me. We both wanted to be married, have kids, enjoyed active lifestyles etc. He had watched me put on my 50-60 specially ordered knee high and thought nothing of it.
Now, at this time 10 years into having lymphedema, there were some things I was nervous about. I had been told around age 16 that if and when I decided to have children I would probably spend 3-6 months in bedrest because of extra swelling during pregnancy. I decided I would worry about that one when I crossed that bridge. I also knew my ankle in my LE leg did not like high heels. No biggie, I would wear high heels for the wedding itself and buy some chunky, white, platform tennis shoes for the reception.
The week of the wedding, I had my updo practiced, final fitting for the wedding dress. I got fake nails the day before the wedding. I could easily get my compression off that night, no problem. The next morning as I am waking up, I reach for my knee high and find that I can’t get my compression on by myself with fake fingernails that are longer than my nails have ever been! My mom helped me get it on that morning. The wedding went on, it was beautiful, awesome, and amazing. My tennis shoes were a good decision, and the reception is still best party I have ever thrown.
Fast forward to the next morning when my husband finds out his wife has a super-power. I had gotten pretty good over ten years at getting this really strong compression knee high on. (Early on, I had learned that my LE was stubborn and required way more compression than many thought was good or necessary) It normally took me a minute maybe a minute and a half to get my knee high on and I thought nothing of it. It took us, with me trying to tell my husband how to get it on me, about 15 minutes that morning to get my knee high on. I was so used to fighting this thing on every day, he had never realized how much compression I was really wearing.
I could have been depressed by this situation, instead, I felt empowered. I could do this thing, that combined took us 15 minutes, in a minute by myself most days. That is a true Super Hero POWER! We did this for several more days into our honeymoon, until I was sick of my husband trying to put the compression knee high on me, I got rid of my fake nails.
Perhaps the most amazing thing in this whole situation is that I had made my LE life look normal and easy. There are many things about having LE that are scary, and not fun, and take extra time every single day. But the longer you have this disease, it just becomes your new normal. I hadn’t even realized all of the little self-care things I was doing every day. I had embraced the suck, and it became my new normal.
Having lymphedema and living with it successfully is a lifestyle. Either you are compliant with wearing your compression garments, whatever they are, or not. Either you are getting the necessary exercise to help your body move that lymph, or not. (The necessary exercise will be different for each person depending on their personal situation, for some this may be chair exercises and maybe water walking, for others it will be more.) Either you are taking meticulous care of the skin on your affected area or not. To do all of these little things every day and make it look normal, that is my Super Hero Power. I just do these things, I don’t complain (there is no point), and I live. I have lived with LE longer than I have lived without it. The LE lifestyle is my normal.