My Life with RA
Diagnosed with Juvenile Onset Rheumatoid Arthritis
I was 10 years old when my life changed. It was summer in Wisconsin, and I was just being a kid. No cares in the world, spending all day and well into the evening outside. Even in the dark. Yet my joints started to hurt. I was cranky, I took every little thing out on my family. My 10 year old mind did not know how to process what was happening. I was taken to the family physician, whom I will never find another like him for the rest of my days, he was that good.
He completed the physical evaluation, and told my mom I had arthritis. Not just any arthritis, though. It was Juvenile Rheumatoid Arthritis, which, you guessed it, is common in children. I had no idea what this meant, other than I got special treatment in school that I did not want, nor did I use. I had to take medications that were forced on me. Disclaimer, I am not complaining about my childhood. In fact, I think I loved my childhood. However, no child wants to be treated differently from their peers, nor take vile medication that caused them to get sores on their tongues.
I found a significant change in physical activity. Almost every other year up until 7th grade where I grew up, the school would take a field trip to a mountain. It was no big mountain, but it was still a mountain. Think of it as a hill. I loved going. It got me out of the classroom, and spent time with my cousin and my friends, outside. It was a five mile walk to the mountain and up to the top. I handled that perfectly. It wasn't until the end of the field trip that I really noticed it. The pain. The pain in my feet. It was unbearable. It was slow going for me. Each step was excruciating pain. I had one chaperone, and only one of my friends stay behind and help me the five miles back to the school. That's right, no special bus sent for me.
That was the day it all changed. I had to be mindful of how long I spent on my feet. I had to wear special braces on my hands at night, which only made it harder to make a fist in the morning. Medication meant for Cancer. I was prescribed a steroid. A strong one, in liquid form, forced to drink it with juice. Thus the sores. Shots, a doctor visit every 2 to 3 months with a specialist. Not fun.
I decided then and there, that I would not let the condition rule me. I was going to own Arthritis. I made it bend to my will. And it worked.
Let's jump ahead to today. I was told that by the time I turned 30, I would be in a wheelchair, with my fingers basically curled into fists at all times, unable to use my hands. With RA running through every single joint in my body, it was likely to happen. It still might.
Now, I know it is not advised to live with something like RA without the use of medications. With all the side effects though, I say who can blame me. I have been in remission for almost 15 years. I was told I would go through a massive flare-up after the birth of my son. Now flare-ups are when the joints swell, pain, mood-swings, fatigue all swamp you at once, and you get irritable. Needless to say, it never happened. I am still in remission. You might be asking how?
One word. Willpower.
I am not sharing my story for pity. Never fails, every time I do, there is always someone who apologizes to me, like it's their fault. No. No pity. I own it. I work through it. I knit. I make chainmail. I play video games. I play with my son. I am living with Juvenile Onset Rheumatoid Arthritis, and I am friends with pain. We've become old friends. It gave me an amazing pain tolerance threshold. And a nice way to gross people out. "Here, feel my tendons rub together." Great ice breaker.
I would not live any other way than how I am at this moment. I love my life. And I refuse to take any medication for it.
Thank you for reading.