My Name is Paula Brooks. I am 37 years old and was diagnosed with A.S. 5 years ago after searching for the cause of my back pain for many years. Looking back I now realize I had symptoms in my teens but it wasn’t until just before my 30th birthday that I had I could no longer attribute the pain I was feeling to everyday wear and tear. Agonizing, raw pain that started in my sacroiliac joints and ran down each leg like a shot of electricity literally taking my breath away. The pain soon migrated to my neck, rib cage, breastbone and feet. It was the kind of pain which would make the thought of sneezing or coughing terrifying! I went to a chiropractor 3 times a week for 9 months with no relief; I tried massage therapy, yoga, hot baths, exercise and multiple NSAIDS. The NSAIDS only caused me stomach issues or migraine headaches, but gave me little relief. For 3 years I searched with much frustration and sadness for answers to my unmanageable pain. Over time I began to slowly lose my mobility. Little things average people take for granted became huge obstacles for me like climbing stairs, putting socks on, washing my hair and playing with my two young children. I was missing work, sitting out of social activities and struggling to put on a brave face for my kids and husband. My family could not understand what I was going thru as much as they tried. Everyone has some sort of back pain right? Everywhere you look there is a pamphlet or commercial talking about how to cope with chronic back pain….
When you live with chronic pain it can change you if you allow it. It made me bitter and sad, short tempered with loved ones and moody. I began to believe that this was all there was for me and sunk into a deep depression. I became withdrawn and emotionally exhausted. Even now I cannot talk about this time in my life without crying.
I went to my family doctor one more time and cried in his office inconsolably. He then sent me for a 5 minute scan that changed my life forever.
The scan showed severe sclerosis and inflammation on my sac joints that the tech said suggested Ankylosing Spondylitis. My family doc was stumped by my results as every patient he had with A.S. was HLA B27 positive, I was NOT. He sent me to the best of the best (in this area) of Rheumatologists. Immediately they presented me with the diagnosis of A.S. I was elated! Strange to some maybe that I was so excited to be diagnosed with a chronic disease, however I was relieved to find out that I was NOT CRAZY, or a WIMP or EXAGGERATING the amount of pain I was in… It had a name, no known cure …but perhaps treatment… (Exhale)…
My Rheumy immediately started me on a “biologic response modifier” medication and I had immediate relief!! After being in pain for so many years I was on a high, the pain was still there but was now manageable. I could stand up straight again, sleep, drive, run, play with the kids; all the little things some take for granted. Soon I started to smile again. There was hope for a better future!
Today,5 years into my diagnosis I have experienced all stages of grief trying to come to grips with the “for the rest of my life” part of this disease; denial, anger, sadness, acceptance. I have noticed that if I marinate in the pain, if I give it too much weight in my life it seems to increase in intensity and tries to rule my day. There are always others that have it tougher than me and I will be thankful to have what mobility I do, just taking it day to day. I will not let this disease define me.
…Pain is inevitable, suffering is a choice