Written By: Jessica Flynn
I’m writing this at 11 p.m. because I’m not going to be able to sleep. Yes, I just had to literally crawl up the stairs to get to my bedroom, stopping multiple times to cry from both physical and emotional pain. Yes, last month, I was walking up the stairs with minimal problems – swollen legs and a clumsy body, but my body and I were getting along quite well.
See, my body likes to switch things up on me a lot. It has me thinking I’m “normal” sometimes and I can do everything anyone else can, except running (that always messes me up). Then sometimes, I’m barely able to walk without shooting pain and my ankles are four times their ideal size.
This is the life of having a chronic illness that fluctuates. When you’re better, you think you’re suddenly “normal.” When you’re bad, you think you’ll never feel OK again.
Ever since I was 5 years old, I’ve had this thing called “lymphedema” happening to my body. As a kid, it was in my stomach, thigh and groin area. It caused it to be really painful and swollen and nobody knew why it was happening. Normally, this disease happens due to cancer treatments or you’re born with it. But mine just decided to happen, in a really odd place with really odd symptoms.
Many different doctors performed different tests on me for medical and research purposes. Nobody could figure out what was going on. Little 5-year-old me already had a bunch of problems – being partially deaf in both ears, needing speech therapy, having undiagnosed autism, and now this. Doctors were convinced it was lymphoma. To this day, we don’t really know if it was at the time. But I got multiple surgeries and biopsies to get rid of the masses.
After a month or so though, they’d reappear and id be swollen again. Then, they tried getting rid of the extra fluid by surgically implanting a tube and bag into my leg to drain the fluids. I had that in for a few months and couldn’t leave the couch. It seemed to work though and that area of my body has been good ever since with the help of many compression garments over the years.
But then, five years ago, I noticed my ankles were swollen and thought it could be sprains so we went to the doctors. After months of appointments, I found out it was the lymphedema again, but in my legs. My doctor said surgery wouldn’t work on this, MRIs showed that the veins in my legs look and work like spaghetti – so basically, very, very poorly. They said there was no cure and to just try to compress my legs and minimize exercise.