As I was going over my calendar for the month, I realized the number of doctors’ appointments scheduled. All are specialists that either I need to see as a result of, or a preventative due to, my Ankylosing Spondylitis. After catching my breathe from adding up the various dollars in co-pays and lab bills ahead, I began to think about how many doctors it took before my official diagnosis of AS. I painfully wonder if they could of just found that missing piece one day earlier could things have been different? Maybe not, but unfortunately I will always have that “what if” in the back of my mind.
I decided to make a list. Either my slight obsessive compulsive trait or just the fact that I’m more of a visual person, made me feel compelled to finally put it down on paper. I was taken back, if not amazed, that the list was so long. I had a moment of frustration. Why had nobody on this list ever thought of sending me to a Rheumy? Why were so few educated on Ankylosing Spondylitis? A lot of the healthcare professionals on the list were doctors I had seen, been sent away, and then sent back to again for another consultation. I was passed around like a deck of cards for years to only end up with a losing hand until now.
- Primary Care Physician
- Physical Therapist
After I finished, I realized that My Rheumy was “lucky 13”. I admit, I did laugh at the coincidence. Sometimes I feel the only way to keep from screaming is just to laugh. I look back at how many of these doctors sent me away with either the “you’re losing it” theory or just an honest, “we don’t know, we can’t help you” result. After reviewing my list some more and wondering why nobody caught it earlier, I began to feel a sense of gratitude for my diagnosis. My Rheumy saved me in more ways than he may ever realize. He gave me the confidence to become my biggest advocate. I had known something was wrong and refused to give up until I got an answer. A person can only mentally handle so many “wrong” answers and I was beginning to question myself until I met with him. It really does take a lot of wrong answers to find the right one.
I’m even more aware now how important it is to spread awareness for Ankylosing Spondylitis. If more people were educated on the signs and symptoms of AS I may have saved myself and others years of frustration. With all of us getting the word out, we may be able to help others receive a diagnosis earlier. Together we can help set things straight!