Some of these you’ve probably heard of. Some you probably do and some of these probably go against the grain. And most of you probably will look at this and think I’m CRAZY!
But, let’s do this.
LET’S DO THIS!
Research. I researched as much as I possibly could about my diagnosis. I wanted to know how to say and how to spell “ankylosing spondylitis”. I wanted to know how I was diagnosed. I wanted to know who got ankylosing spondylitis. I wanted to know if it was common. I wanted to know what drug options I had, what doctors I needed to see, and what food I should eat. I was determined to figure out how this was going to fit with my dreams and the rest of my life. Keep in mind that was 14 years ago…when I was accessing the internet through AOL and using DIAL-UP! Today, the possibilities are endless. We’ve come a long way in the last 14 years, people.
Honesty. I still find myself working on this one…constantly. Especially since my disease is so… invisible. You wouldn’t know I had arthritis just by looking at me. Which is sometimes good because my disease definitely doesn’t define who I am or what I’m capable of doing. However, it usually makes conversation difficult if you’re not truthful with what you ARE capable of doing. I had to learn to stand up for myself with honesty. Especially with my family and friends since it was new for them too! That awkward RSVP “yes” and then explaining the random “no” because I was having a flare. I had to get honest my coaches, teachers, and bosses. And you guessed it… I’m very honest with my doctor and the expectations I have with my life. I ask questions all the time and I expect honesty from him. After all, I wanted and still want to achieve my dreams; Dr. Rheumy knew and knows that. So, we do whatever possible to get there. The most important person you should be honest with? Yourself!The best thing I did after I was diagnosed was volunteer. At first it was taking time to help out at the pet shelter, working as a volunteer at the hospital, or running a Relay for Life Team. Now? I volunteer for the Arthritis Foundation focusing on their signature event “Walk to Cure Arthritis”. I’ve volunteered with them for 7 years and it all started a few weeks before my wedding as a day-of volunteer. Now I’m the Co-Chair for the Boston event. Why do I recommend volunteering? It gets your mind off the diagnosis. I decided to focus on my volunteer efforts to help FUND and FIND a cure. After I volunteered, I realized HOW much I needed to be around people like me. Other invisible young adults who were diagnosed. I only wish I was involved earlier and especially as a kid. The Arthritis Foundation has some terrific programs for JA kids.
I was diagnosed at the age of 16 and I remember being told by my Rheumatologist that if I DON’T exercise my rib cage will fuse together and I could puncture a lung and DIE, scared the living SHIT out of me. Excuse my French but SERIOUSLY! SCARED ME TO PIECES! Exercise is not an option for me. The days I don’t exercise is because I physically can’t. I take exercise very seriously. I always look for the best and suitable option for my arthritis. As you can see, my doctor told me I had to exercise. If exercise and movement is your goal, talk to your doctor.
I made my health my number one priority. For me, I knew if I didn’t, I’d never achieve my dreams. Understanding where your diagnosis lays within your priority list helps you understand where you want to go with your diagnosis and how you’ll get there!
What top 5 things were on your list when you were diagnosed? What did I miss?