About a month ago I hurt my back. It wasn’t severe and I don’t remember anything I did, specifically, to injure it. I really didn’t give it much thought until a few weeks later when I moved the furniture in Scout’s and Jem’s room. The pain afterwards was astounding. I ended up in the ER the next night because I couldn’t handle the pain. The doctor poked at me, didn’t listen, told me my back was sprained, then ordered some shots and a narcotic I told her I couldn’t take. I spent a week and a half in agony, taking the drugs off and on when I could no longer tolerate the pain.
Yesterday morning I woke and was unable to move. I told my husband through my cries of agony that it felt as if my back was broken. Thankfully, I had a doctor appointment in the afternoon and I was praying that I’d get some answers.
My physician was horrified that the ER had not taken any x-rays, and she sent me immediately for images. When the x-ray tech told me I had to lie on a hard table on my back I almost threw up. I knew it meant more agonizing pain, but I also knew I did not have a back sprain and I hoped we would have some quick answers. I really thought I had fractured my spine somehow, and my doctor was thinking, also, that I had a pressure fracture.
After the second x-ray was taken, the tech said she wanted to look at the images before she moved me to a different position since moving was so painful for me. When she walked back to her computer I heard hear loudly exclaim, “Oh my gosh!” I was hoping she spilled her soda and wasn’t shocked at what she saw on her monitor. Fear and dread set in quickly.
I waited in my doctor’s office for the results and when my doctor walked into the room she said, “You definitely have something going on inside. You have a disease so rare that I have never heard of it and know nothing about it.”
She explained that I have Diffuse Idiopathic Skeletal Hyperostosis, commonly referred to as DISH, and that the ligaments surrounding and supporting my spine had turned to bone, developed spurs, and those were causing damage between my vertebrae. Then she told me that my spine looked like the spine of a 90-year-old with degenerative disease.
It gets better.
There is no cure. There is really no treatment for the disease — only for the symptoms. The more my ligaments calcify, the less range of motion I will have and I’ve already lost a noticeable amount. We are hoping that physical therapy will slow the process down somewhat, but until I see a specialist I really don’t know what I’m facing…except shots in my spine to manage the pain. She cautioned me that because my ligaments are no longer able to stretch and flex, any kind of bending or twisting can now cause fractures. A simple injury for someone else can paralyze me.
I’ve begun taking steroids to hopefully decrease the pain quickly, and opiates for the current pain. I wish they would take away the pain I’m feeling inside — in my heart. I’ve been married to Atticus for a little over two months and I’ve basically become an invalid overnight. I want to be a burden to no one, but right now he and my boys are doing basically everything. He even has to open my pill bottles because I can’t gain the leverage I need to open them myself.
I was exhausted last night and overwhelmed by my diagnosis. So after a late dinner with the family, my boys cleaned up so that Atticus and I could go to bed. He held me and we talked…and joked…and laughed. I can always count on him to keep my spirits up — and I realized something wonderful. My disease may take away my ability to move freely, but it cannot take away my joy.