At the age of fifteen, you shouldn’t be worried about chronic pain or giving yourself shots or missing out on a normal school experience. But that was my life at the age of fifteen. I first started to notice a pain in the SI joint area in March of ’04 (of course I didn’t know it was the SI joints at the time.) , but thought it might have been from my old mattress. I continued on for three months with this pain, always getting better as the day progressed. But my observant mother realized I was starting to change. Normally a very outgoing person, I was quiet. Normally always so eager to get up and go, I was spending more and more time in the house. Finally, in June of ’04 she decided that I was going to see our family doctor, if I wanted to or not. The visit was pretty normal at first. He thought the back pain was most likely the mattress as well, and told me to get a new one. But on a offhandedly sort of way, just as I was about to leave, I mentioned my right pinky was also sore and looked a bit odd. That, combined with my family history of rheumatoid arthritis, changed his whole attitude that very second. He realized right then that what was causing the problem was probably AS, or something similar. He ran some test and drew some blood, also sending me in for MRIs and X-Rays. My mother and I went home, sick with worry and fear of what the results may show. Two weeks went by, and I hadn’t heard from them. I didn’t know how long these results would take, so I didn’t know if it had been long enough to call or not. On June 18th, 2004 I received a phone call from my dear, beloved, late aunt Mimi saying she had something very important she needed to tell me, but just couldn’t over the phone, that she would be by in a bit. Little did I know that she had seen the same doctor (everyone in my family saw him) that day and that he had given her the news of my diagnosis, asking her to past it on. As unprofessional as that is, I am glad I received the news from my aunt who, along with my mother, showed the utmost compassion and sympathy for what I was dealing with. So much more sympathy than what a doctor could give me.
Today I’m a single 28 year old mother of two amazing children, ages two and five. I work full time as a sale operations specialist, come home to an apartment I share with a roommate and his seven year old son, make dinner, help with homework, bathe kiddos, make lunches for the next day, put kiddos to bed, and if I haven’t passed out from exhaustion try to get some video game time in. My AS has affected my life in ways beyond the chronic pain, the muscle weakness, and the hands that just won’t do what I want them to. It took moments of life away, moments I had to miss out on because I was too tired, or it would cause too much pain the next day. The pain killers I was prescribed at 16 became a problem. I was addicted, not dependent. I struggled with a 13 year long drug addiction, stemming from the few pain pills I was given by a concerned mother here and there at age 13, when the pain started. I was bitter at the universe for dealing me the hand it had. I was resentful that I was 16, but felt 60. I didn’t finish high school, I didn’t attend a prom, and I didn’t walk across a stage to receive a diploma.
The pain killers were an escape from the bitter resentfulness. It started as an “I’m a patient, so this is okay”. Eventually it became, “I don’t give a damn, I just don’t want to feel any physical or emotional pain.” I lived in that addiction for 13 years, half my life. My sobriety date is March 17th 2014.
If living with AS has taught me anything, it taught me to be a fighter. And it has taught me to be forgiving towards myself when I don’t have the energy to fight. I have had to learn to manage the bad days without narcotics. Some days it is not easy, but its the only choice I have. Today I am at peace with my diagnosis. And it helps having a best friend who also lives with an auto immune disease. We have each other to lend an ear when we’re having bad days. I have discovered helping someone else numbs the emotional pain better than any drug. Since getting sober I met another young woman “in the rooms”, as we say, who also found herself addicted to drugs after being diagnosed with AS. My experience, pain, and suffering have a purpose now. I use it to help other women who are currently living it. I have turned it into my experience, strength, and hope. After spending half my life resentful at my body and the diagnoses, I am now grateful from everything I have learned through the struggle. From pain comes growth, hope, faith, and courage.
Stand Tall, you guys!
Houston, Texas United States of America