Good morning everyone! It is a beautiful, fall day here in the top of Texas. Well. A beautiful fall morning. It will probably be summer again by afternoon. But that’s not what’s important. What’s important is that today is Day 6 of the #RABlogWeek challenge. Today’s topic is “Onset stories.” So let’s go way back to the start of this journey.
My onset was very non typical. Because why be typical, right? I was 10 and suddenly had what my Mom thought was pink eye. Two doctors later and it was revealed to be iritis instead. Iritis, an inflammation of the iris, is often linked to Ankylosing Spondylitis. So that’s what they thought I had. According to my quick and sloppy research, they’re only just now starting to link iritis and juvenile rheumatoid arthritis. Hindsight being what it is, I now know that my correct diagnosis should have been juvenile RA.
But little girl me didn’t get that correct diagnosis. I was treated for years for AS. Thankfully the juvenile RA that I actually had responded to that treatment too. I went three years without any major disease activity. I saw an eye doctor once a year and a rheumy a few times a year. I took a little white pill (Naprosyn) with breakfast each day. And I lived a normal kid life.
Until I went to a sleepaway horse camp the summer I turned 13. One morning at camp I woke up with a grossly swollen, hot, painful foot. The woman that was our dorm mother thought I’d been bitten by a spider. I didn’t want to miss out on the fun of camp so I shoved my swollen foot into a tennis shoe and insisted I was fine. By the end of the day my fellow campers were helping me get around. My mom was called the next morning. She took me right to my doctor who sent me right to my rheumy. I was having my first disease flare.
After that I knew what it was like to have arthritis. I’d have little flares on occasion. Sore, swollen joints. I was tired more often than your average teen. But I was still living a normal life. I bought a horse. I started showing. I was busy and active and could even sometimes forget that I was sick.
Then when I was 16 I started feeling run down. I couldn’t stand up for very long without getting light headed and dizzy. I had to take breaks all the time. Mom took me into the doctor who drew blood and sent me on my way. Then I got called at school to come home right away. They admitted me to the hospital with severe anemia a few hours later. Normal iron levels should be in double digits. Mine were around 3. I shouldn’t have been able to walk or drive. That little white pill I’d been taking since I was 10 had eaten my stomach up, making me slowly bleed until it tanked my iron levels.
I spent two days in the hospital. And I got my first taste of how isolating being sick is. I didn’t get a single visitor. No friends came to check on me when I got home. No one wondered where I’d gone when I came back to school. I tucked a part of me away from my friends after that. I became more independent and more of a loner.
I was diagnosed as a child. But I really consider my onset to be those two incidents at ages 13 and 16. At 13, when the disease activity was visible, I had support and understanding. At 16, when I was flattened by the side effects of my illness and still was looking like a normal person, I had nothing. Those two moments really set the tone for an RA life. If people can see that you’re sick they are kind and caring. If they can’t, they think you’re faking or being a drama queen.
Now, newly diagnosed kids have so much more than I had. Education, support groups, arthritis camps. And their are better tests now so those kids don’t get misdiagnosed for years and years (I was 30 before I was finally given an RA diagnosis). They aren’t lucky to have RA. But they are lucky to have RA in a time when they have so much more support available to them.
To read all of the #RABlogWeek blogs, go here. Click on the links under each topic to read that day’s blogs.