My RA Reality
It all started when I was 10 and woke up in the middle of the night screaming with pain. My mom took me to the emergency room where they found a lump on my right knee. The doctors told my parents that it was just "growing pains". The pain continued and I remember not being able to play softball and having to sit out. People thought I was faking it.
My parents eventually took me to an orthopedic surgeon to plan on removing the lump on my knee, which turned out to be a benign tumor. After the surgery the same doctor asked me to make a fist with my hands and discovered I couldn't. He referred me to Mayo Clinic where I was diagnosed with Juvenile Rheumatoid Arthritis.
I'm 30 now and my JRA has progressed. I had a total hip replacement this last April and now I'm trying to make the decision to have my ankles replaced. I'm currently taking Actemra injections once per week and it helps with the all over body aches and pains, but there is still a lot of joint damage and inflammation that I can't seem to get control of.
My ankles swell and get stuck if I'm on them for more than an hour, and the pain puts me in tears and is unbearable. It's frustrating and I feel like doctors either don't know how to help or think that I'm a hopeless case. It gets lonely and I feel sad a lot.
It's been such a long journey of pain and being misunderstood by friends and family, but I hope to share some of my experiences with RA so that I can help someone who understands.
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?