AS and RA Won't Win
Last updated: December 2022
I was a child with birth defects. My mom and dad chose me over the doctor's recommendation to let the state take over. 1962 was a different time.
I finally had surgery to correct most of the defects at age 4. I was diagnosed with arthritis at that time.
Fast forward to 1978. I began the migraine, costochondritis roller coaster. A fresh-out-of-school chiropractor diagnosed me with AS. At that time, AS was still considered a boy's disease. As a girl, I got a pat on the shoulder and was told not to gain weight and stay active.
I did my best. I am sure keeping active helped immensely. I even joined the US Navy! I only lasted 4 weeks in basic training before AS kicked my behind.
Life went on, and the surgeries to keep me mobile became more frequent. I met and married my husband. I had one child, a daughter. More life went on.
Then I turned 50, and an ER doctor saw my x-rays, and finally, I had solid proof of AS. My broken ribs from a swimming pool accident quickly turned into the hell that is AS.
My rheumatologist found multiple fusions and a solid sacroiliac (sp?). My lumbar vertebrae were 85% fused. Dome thoracic vertebrae were fused. My sternum and ribs had calcified, creating a veritable cage for my heart and lungs. The ribs are also fused to my vertebrae.
Then RA was diagnosed after blood work confirmed it. I was told my AS was a freight train, and I was tied to the tracks.
More life went by. Then suddenly, I am 60. I still push hard at the bindings of AS and RA. I weigh my daily movements by how much I am willing to invest pain-wise.
Yes, I rely on my faith a lot. My husband is my main caregiver. We are adapting our home and our lives to my constant changes and abilities.
Battles lost are lessons learned
In August, I suffered a sideways fall and broke my neck in 3 places, "the luckiest places a neck can be broken," and still walk. However, I have been told I am one calamity from disaster.
I ordered myself an Action Track Chair to keep me mobile outside. I have an electric wheelchair for inside fun. (I tell people it's not NASCAR, it's AS-s-CAR!
That is my story. My battle has been long; the battles lost are lessons learned. Now I treasure my freedom and engage my abilities. I call my AS Herman. My friends all know about Herman. Most conversations start with, "How is Herman today?"
I say, "It's all good. I'll be fine." That's a lie everyone tells once in a while.
Do you notice worsening flares in colder weather?