I love to have a mission in life, to have goals, a good challenge, and a clear path forward that I have formulated. Naïve as it may have been, I felt excited about starting my new diet. When your only other option is becoming dependent on heavy painkillers and biologics that do not stop disease progression but may in some cases slow it down at best, beginning a depressingly restrictive diet doesn’t seem too intimidating.
The whole, ugly truth about Ankylosing Spondylitis is…it typically starts as painful inflammation in the Sacroiliac Joints, but usually develops to also effect some combination of the spine, ribs, shoulders, heels, feet, hands, neck and sternum. It can lead to uveitis, causing blindness, and in rare cases can attack the lungs and heart. In its progression it spreads into the spine, creating so much inflammation that the vertebrae stiffen up and fuse together — a condition known as ‘bamboo spine’. As the spine fuses, its lumbar curvature straightens out, causing it to eventually pitch steeply forward. In advanced cases the spine and neck become mineralized and pitched at such a steep angle that the patient can no longer lift their head to see in front of them, and the ribs may become too constricted to breathe deeply. These are, of course, severe cases but they do happen. The Hunchback of Notre Dame?…Probably a victim of AS.
To put it lightly, I was motivated.
I began by using up the starches we had in our household…some green peas, a bag of rice, a couple cans of chili beans. We went to Casey’s in Guttenberg for one last heavenly, greasy pepperoni and sausage pizza, savoring it at a favorite spot that overlooks a steep valley full of soaring hawks and eagles.
Some AS patients report their disease has mostly gone into remission by merely reducing starch and lactose. But two things quickly became apparent to me. One, that wasn’t gonna work for me. Two, the less often I had starch, the more dramatically my AS responded to it when I did. By my 42nd birthday in late October, I was fully fed up with the pain all over my body. I decided that day that there was to be no more starch or lactose in my diet. Period. We went to Iowa City with my folks for a birthday dinner out, and I ordered the most boring item on the menu…picking the peas out of it and resisting the starchy appetizer the others had ordered. I was done with living in hell.