Good morning world! It’s Monday, which, let’s be honest, isn’t that great. But it is also the first day of the second annual #RABlogWeek. Now that, my friends, is rather awesome. A whole week of blogs all over the world talking about their live with Rheumatoid Arthritis. Raising Awareness. One of my most favorite things to do. You can click on the logo over there and go get more info on RA Blog Week.
Now, onto today’s topic – Starting Stories.
My starting story began a long time ago in a far away land called Texas. Okay, so Texas isn’t a far away land. It’s home. But my story did start a long time ago. Almost 30 years ago exactly in fact. I was diagnosed when I was just 10 years old. Of course, I got the wrong diagnosis but we’ll get to that.
Because I’m weird and can’t ever do things normally, my diagnosing symptoms were not joint related. My eyes were the trigger that started this story. When what my pediatrician thought was pink eye wouldn’t respond to treatment he sent me to an eye doctor. This eye doctor thankfully was a wise and highly educated man. He saw instantly that I actually had an inflammation of the iris. Because Iritis can be a symptom of Ankylosing Spondylitis he sent me straight to an arthritis doctor where I was saddled with the diagnosis of AS. I carried that around with me for a long time, not believing it was correct until I finally found a doctor roughly 10 years ago who was willing to start at zero with me. He did a full work up on me. That’s when I finally got my correct diagnosis of RA.
That’s the quick and dirty story of my RA journey. But really, today isn’t about that. It’s about what it felt like to get that diagnosis. At age 10, I didn’t really understand it. Back then there wasn’t a whole lot of support for the newly diagnosed, especially kids. There weren’t camps or groups for parents to join. All my mom and I got when we walked out of that doctor’s office was a few prescriptions and a handful of brochures that, honestly, I never read. I just knew that suddenly I had to take pills each morning instead of a Flintstones vitamin. I knew that I was suddenly even more different than the other kids. It was isolating. And continued to be that way most of my life.
My second starting story is better. When I finally got the correct diagnosis 20 years later it was a cause for celebration. Finally I was on the right track. Finally I had a doctor who was on my side. Getting the correct diagnosis gave me my voice. It flipped on the advocacy voice in my head and got me out there, working to correct all the failings in our medical system that kept my treatment so messed up for so long.
Thankfully, the world of RA is totally different today. Doctors are more willing to listen. There are so many resources out there for the newly diagnosed.
I hope that no one will have to tell a starting story as convoluted as mine ever again.
PS. I have a book coming out! (Yay!) Restoration Road will be released in October. If you want to know more about it, click here. And keep watching my blog for more information on when and where you can get your own copy.
6 thoughts on “2016 RA Blog Week – Day 1”
So good to hear your story, thanks for sharing. And hello from a fellow geek!
Congrats on writing your own book! That’s awesome! 🙂
First, congrats on your book!
I love what you said: “Getting the correct diagnosis gave me my voice.” Yes, sometimes it’s knowing what is really going on with us that helps us the most. Just having a name for it, and knowing how you can treat it in order to get better, is important. Feeling different and always wondering why is never a good thing.
It’s great to connect with you again this year on #RABlog Week!
Thanks Linda! Great to reconnect with you too!
Elise, what a pleasure to have you blogging with us this week. I so appreciate your starting story. I found that with me I was able to deny the RA Dx for many years, but dug deep to get the AS Dx as time went on. For a few years before the RA Dx, I hobbled around and was in great difficulty, yet I refused to ask a doctor to look things over. When I was Dx’d I was in shock.
Then four years ago I asked about how badly my back felt. I spend time in many offices, had blood work and well before any of my doctors would admit it I knew I had AS as well. The genetic tests proved and 2 years later the back specialist confirmed I have AS.
Why do we have to fight so hard to get to an end?
Thanks Rick! I’m happy to be part of the group again this year. I always tell people, any answer is better than no answer. There is something powerful about have a diagnosis (a correct diagnosis). It gives you something to fight against.