My symptoms of lymphedema began when I was 21 and in college. I had always been healthy and somewhat active, going to the gym almost every day. I was about thirty pounds heavier though than I am right now and did a lot of high impact exercise. I still remember the day I noticed that my right ankle looked a little swollen. It wasn’t sore so I chose to ignore it, believing that it would eventually take care of itself. The swelling never went away and in fact continued to rise up to my knee. A short time later I discovered that when pressure was applied to my shin it would pit. That’s when I decided to go to a doctor to see if I could get some answers. I went to the Mayo Clinic here in Arizona where I learned that I had a condition called lymphedema. When the doctor told me that I needed to wear stockings I thought: “That’s never gonna happen.” Seriously, why would a 21-year-old wear ugly brown tights? Anyway, I didn’t understand how critical stockings were to my condition so I chose to ignore the doctor’s advice.
I managed to go through the next two years without wearing stockings but the swelling did get worse. During those two years I served a mission for my church in Switzerland, which required that I do a lot of walking. I remember coming home every night and my right ankle being literally twice the size of my left. Fortunately, I never suffered an infection while abroad although the swelling was very evident and uncomfortable.
When I returned home, things changed. I went back to school at BYU and continued working as a bank teller. I was on my feet a lot for most of the day. The swelling became unmanageable while my skin felt like it was going to snap like an overinflated balloon. I developed my first infection during my second semester back to school. I spent three days in the hospital while antibiotics were fed into me through an IV.
The doctor told me to go see a lymphedema therapist at the University of Utah who would teach me to manage my lymphedema. The therapist fitted me for compression stockings, taught me Manual Lymphatic Drainage (MLD), and showed me how to properly bandage my leg. As I faced my new reality I remember feeling completely overwhelmed and depressed. My self-esteem had always been pretty low, but with this new diagnosis I felt completely humiliated, ashamed and embarrassed by my condition. It was at this point that I exited myself from life.
For the next five years, I did everything I could to avoid dating, socializing, or being seen. My days were spent at work, at home, and occasionally at school. I got two more infections during these years, which caused me to become over-cautious about life. I had great friends who tried to get me to be more involved but I would refuse all their invitations saying that I couldn’t because of my leg. I did everything I could to stay under the radar, and I succeeded.
It wasn’t until I turned 28 that I decided that I wanted to participate in life again. I made myself try new things to see what I was capable of doing and accomplishing. My goal was to try things that scared me. I tried new sports, lost weight, and started being social again. I want to say that life was fun from then on, but honestly it was difficult and frustrating. Every step forward required so much physical and emotional effort. But, I wouldn’t have changed a moment of the growing pains I went through.
I discovered strength and capability that I never knew I had. I started running. I learned to ride a dirt bike and motorcycle. I tried wakeboarding. I went rock climbing. I traveled to Europe and South America. I met and married my husband. I was able to carry and deliver two healthy beautiful little girls. I am happy.
I found early in my diagnosis that a google search of lymphedema brings up a lot of frustration and hopelessness. I completely understand. I have experienced these feelings. What I’ve learned though is that you can still enjoy life even with lymphedema (or any other condition for that matter). That’s why I’ve created this blog, to show you that it is possible. It absolutely takes a lot of effort. But, what I’ve found is that in the end all the effort is completely worth it.