By: Annette J., Duval County
Three years ago, I moved from Connecticut to Florida so that I could be closer to my family. I was diagnosed with Pigmented Villonodular Synovitis (PVNS) and forced to stop working. I had two good jobs as a cook and was excellent at it! I worked in the magnet school system and had good benefits, including health insurance. I started having trouble with my knee and it all seemed to unravel from there. One day I heard a loud pop in my knee followed by days of constant swelling. I went to the doctor, but they couldn’t find anything. It took two years for the doctors to find the tumor in my knee. Once they diagnosed me with PVNS they never sent me back to work.
PVNS is a tumor that grows in the joint lining in between your knee joints. The tumors must be taken out once a year. Doctors say it’s a rare disease and not hereditary. They don’t’ know where it came from, but I wish I could give it back. There’s no cure. The tumors usually show up on an MRI, but mine never has, which is why it took so long for me to be diagnosed. It was painful physically, but not being believed was emotionally hard too. I felt like an idiot, and thought, ‘maybe I’m exaggerating.’ Doctors don’t believe me until the cut me open and see it for themselves.
When I moved to Jacksonville, I was able to get in at Shands. Shands doctors performed surgery in 2018 and removed the tumor but found another one in the back of my knee. They couldn’t remove it because they want me to see a tumor specialist first. Shands doesn’t do that type of work so they’re waiting on me to see a specialist first. But I don’t have health insurance, so seeing a specialist is off the table.
Right now, I’m at a standstill because I’m waiting on my social security disability to be approved. This is my fifth time applying. I’ve been denied four times. I hear that you must have major joint damage to be approved, but my doctors say I have major damage. I’m not able to work at all. I might be able to do a sit-down job, but I can’t get there because I can’t move my leg. The more I move the worse it gets. At home my foot is up all the time or I keep it slightly stretched. Otherwise I’m in constant pain. It feels like someone is banging the heck of my knee all the time. Sometimes I take aspirin for the pain, but it’s gotten to where it makes me sick on my stomach. I sleep three hours at a time, but then the pain kicks in.
I hope my story helps someone. Florida needs to expand Medicaid so that people have the health care they need in order to get better.