I have been dedicating my blog to ankylosing spondylitis awareness, but I have several other diagnoses as well. I believe while AS is my main fight, these other diseases aren't making it easy for me to keep fighting. Today I want to share one of the other enemies of my body.
It all began in my childhood. I can remember as an 8 year old crying with back pain. My aunt babysat me daily while my parents worked. She was an older lady, the kind who tells all those intriguing tales of the good ole days. My aunt was born in 1918, she was in her 60s when I was a child. I guess I equated her to a grandmother, since a majority of my grandparents passed away before I was born. My aunt told my parents I needed to see a doctor about my severe back pain. Mom and dad were tobacco farmers, with a few cattle, plus they worked on a job 40 hours a week. They stayed so busy they really didn't see me very much. I mean I slept in their home, but I was dropped at my aunt's house when I wasn't in school. They didn't really see me during the most painful episodes.
My aunt would massage my back when I was screaming and crying in pain. She would have me lay flat on the floor and press my lower back into the floor. Little be knownst to her or me, that was one of the exercises I would eventually be prescribed by my physical therapist.
Finally when I began my 4th grade year, my school had a scoliosis check. I was shocked and scared when the parent volunteers pulled me aside and asked a health department nurse to take a closer look at my spine. I remember being embarrassed and wanted to go back to class with my friends. However, the health department nurse had a list of questions to ask me first. She asked if my back hurt, how long it'd been hurting, and what my parents phone number was. Of course with my parents either working at their place of employment or on our farm, it was no easy task to get in contact with them. I went about my days aching but the fear of that scoliosis check day subsided eventually.
In what seemed like months to a child, a letter was delivered to my parents urging them to take me to a local orthopedic clinic. As a child I was terrified by doctors so I begged for them to ignore the suggestion. After receiving that letter though it convinced them my aunt had not been overreacting. I truly had something going on with my spine. So an appointment was scheduled.
The day arrived and my mom took me to the orthopedic clinic. There were kids in wheelchairs, on crutchs, and wearing various types of braces. As a child this was a very scary sight for me since I didn't know how scoliosis was treated.
The nurse called me to come back to the exam room. Terrified, I just wanted to go home, even if I had to cry in pain every day. When the doctor entered the room, the first thing I see if a goofy necktie. This doctor was unlike any doctor I had ever met. He joked with me and sat down to chat. This doctor had the very best bed side manner for dealing with children. Later after I relaxed, he began asking about my back pain. He explained they were going to do xrays and what I could expect during that.
After the doctor looked at my xrays, he told me I have two curves. One is more severe than the other. He recommended fitting me with a custom made back brace. The brace was from just below my hips to under my breasts. It had velcro straps all the way up the back. I always assumed that was to deter me from removing it myself. Sneaky! He informed me I will need to wear this 23 hours a day until I stop growing. Little did I realize that meant until I was 17 years old.
The brace did help with my back pain to an extent. Although, we did not have air conditioning in our house or vehicle so summers were a misery in that brace. Mom would sprinkle cornstarch powders on me to help with the heat rashes I developed. I spent a lot of time sitting in front of a portable fan.
Once I stopped growing at age 17, I was free from wearing the brace. Surprisingly, some days I wish I still had that back brace. As embarrassing and hot as it was, it held my back exactly where it needed to be. Over the years when I had worsening back pain I attributed it to my scoliosis, I didn't realize something else could be the culprit. At age 43, I was diagnosed with ankylosing spondylitis. Sometimes I wonder if my childhood symptoms could have been the beginning of my ankylosing spondylitis.
My point is if you have continuing pain talk to your doctors. Don't just assume what's going on, ask questions. You know your body better than anyone, be your own advocate.