The Girl With Arthritis

 From research and tech advances to patient-doctor dynamics, care has come a long way since I was first diagnosed with juvenile arthritis almost twenty years ago. Since I first started seeing a rheumatologist, I’ve gone from carrying around a plastic hospital card to checking in for appointments on my phone. When I think of my experiences from where I started this journey almost twenty years ago to where I am now, the care seems somewhat archaic. It’s incredible how much medical progress I’ve witnessed over almost two decades. As the years went by, I started to have more options, more access, and overall better experiences as a patient. I was only twelve years old when I was diagnosed with juvenile arthritis, to be clarified as juvenile psoriatic arthritis (PsA) a year or so later. My 12-year-old mind would have been blown by everything we have today! Read the full article at Bezzy PsA

The process of being diagnosed and treated for one chronic illness was brutal. I wanted to cry when I realized I’d be going through this process again with another chronic illness. I’m stronger and wiser this time but also a little jaded. While I’ve had psoriatic arthritis (PsA) since childhood, and it’s had a significant impact on my life, it’s not my only chronic illness. Unfortunately, once you get one autoimmune disease, it’s not uncommon to be diagnosed with another. Read the full article at Bezzy PsA

Recently I was asked (by the lovely Ms. Rainbow ) if since I got arthritis at a young age, did I have a transition period of getting sick or did I always accept? In all honesty, it was a very long, ongoing transition. When I was very little, I wasn't 'normal' like other kids were: I tired very quickly, my leg dragged, I was very stiff and I always remembered being achy. But I didn't know that wasn't normal until I was eight years old. At eight years, I had what I still call the 'worst flare of my life.' I could barely move and was in hospital for about a week and a half (I'm still a little fuzzy about what went on at that point). I had an extremely high fever and severe hip pain, and all my scans showed inflamed fluid on my joint. Unfortunately 'the greatest children's hospital in the nation' sent me home and said it was viral arthritis, and never followed up. Afterward, my joint pain was much worse in my hips- in fact, they were the only j...

Lately I've had incidents of my fingernails and toenails turning blue. It's not as if the skin was blue, which would be terrifying, but it was still a little concerning. I brought it up with my rheumatologist the other day and showed him numerous pictures I took of it. After he examined my fingers and toes and felt how cold they are, he gave me a diagnosis: The blue was caused by me standing or sitting up. The treatment? Lie down. Best treatment ever. I took this with a grain of salt. Lie down every time? I can't wait to lie down in class, on the train, randomly in stores. It's literally a dream come true. Doctors really don't get it. They don't listen. Even the best of the best can be dismissive sometimes. I really like my rheumatologist and I've been with him for years, but sometimes he's just a pain in the butt. Did not listen to me explain that it happens when I can't warm my fingers or toes? It's obvious I probably just have a very mil...