How I found out I had lymphedema

I was 18 years old, a senior in high school when I first noticed swelling in my right foot. My interests were typical for a 18 year old girl including: dance, working a part time job at a gelato shop, contemplating if I was enough, and planning what my next step would be. I was very active on the dance team and took 4 hours of studio dance classes on the weekends. I noticed that my right foot was swollen sometimes; I rationalized I must have sprained my ankle. I remember my foot being so swollen that I couldn’t even get it into my boot. My foot would swell for a few days and then go away for a few months.

Prior to my ankle swelling, I had severe abdominal pain in my right lower belly the year or so before. Like 8/10 pain. I had gone to my doctor and had a CT scan with contrast that revealed constipation. Wow. My doctor at the time told me to eat more fiber and I thought nothing of it.

My mom told me her and my grandma both had to watch their sodium consumpution because they would notice leg swelling on a hot day.

As I progressed through my senior year into my first year of college at Texas A&M (whoop!), I noticed that the frequency of my right foot swelling and the amount of time between swelling was increasing. Being a young female, it was really hard to wear high heels, capris, or just show my ankle without someone asking about my swollen foot. At first, I shrugged it off. As time passed it really bothered me I didn’t know what was happening. I went to my primary care doctor who sent my for an ultrasound to rule out a blood clot. No blood clot. I got blood work and radiographs done with no results. My answer was we don’t know why you’re having swelling.

One day I got very sick with a fever and some other symptoms and I noticed a lump on my R groin area. It was hard. Maybe this was a clue?

I let my doctor know who sent me to a gastroenterologist. He suggested we biopsy the lymphnode. I remember on the day I was going into surgery that I was really scared for the results, the procedure, and my expectations of being a young person who should be out laying at the pool or what all my friends were doing. The biopsy came back negative with fibrosis (essentially there was an infection in the lymph node previously- duh). The results were great that nothing more sinister was present; it also didn’t give me any answers. The swelling started to get worse and at this point was present most of the time.

I went to a physical therapist at my college university in 2006 where he wasn’t sure what was happening and told me to use ace wraps over my ankle and ice. EVERY medical professional told me to elevate. That’s a whole topic of it’s own which I will address later.

I probably visited no less than 10 different medical providers trying to figure out what was going on with me over 2 years. During this time I felt very out of control and resented my body for betraying me. During a time in my life where I was finding out who I was; I was hiding both emotionally and physically (i.e. pants in a Texas summer). I continued running with my foot swollen because what else was I going to do? I sometimes would drink too much at parties because it helped me numb. I poured myself into my studies and made a 4.0 because my learning was something I could control.

I was home for the summer visiting one of the first people I had met in Texas, Natalie. We were playing cards when she noticed my swollen foot and said I should see her mom. Roz is an OT and a great advocate for critical thinking in the medical community. She works with patients who have lymphedema regularly and recognized what was happening. She sent me to a physician who had worked with lymphedema; he diagnosed me after an interview and medical exam.

It felt so good to get some answers. Generally, I don’t think labeling people is helpful for many reasons. However, sometimes a label can provide validation. We have to “name is to tame it.”

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