Since I was 16 years old I had periodic intense pain in my lumbar. The doctors always diagnosed it as lumbar sprain. 15 years ago, it got so bad that I was down for almost 2 years. Every time it seemed to get a little better, I would take a giant step back. I felt like my doctor at the time thought I was faking my pain to get out of work. He eventually ordered the HLA-B27 test. I never got the results at that time because I changed doctors right after. I gradually got better, but would still have big flareups from time to time and I settled into what I call a “comfortable” level of pain. Then early 2013, it started getting worse. I couldn’t sit or stand still for almost any time at all with out grave pain. My hips and ribs were now hurting too. And my eyes… I’d always been light sensitive, but now they just hurt all the time. I finally went back to the doctor expecting to be told I had another lumbar sprain. After X-rays my doctor said “I’m not sure what I’m looking at!” He sent me to an Orthopedic surgeon. Who in turn sent me to a neurologist. Who then sent me to a rheumatologist. Eventually I was diagnosed with ankylosing spondylitis. Currently, only my lumbar has significant fusion. With traces on my ribs, and some spurs on my hips. I started Remicade a few months ago which seems to help with the inflammation. I have had one major complication though. I fractured one of my fusions in my lumbar, which left bony material floating around. Which left me in quite a bit of pain when they got into the nerves. A few days ago I was treated for the first time with RF ablation. I’m full of hope that this will finally give me some relief. At times it has seems like dealing with the extreme physical pain has become secondary to the mental and emotional toll I know that we have all endured. When nobody but our fellow spondy’s know how we feel. We get tired of people always asking us how we feel, then we get upset when they stop asking. Or when people try to compare your pain to their backache… And you know they just don’t get it. We miss out on so much of life because we can’t even find the energy to get out of bed. The sleepless nights. All the people who think you’re just lazy. The list goes on and on. But I have finally come to a place where I am not going to let this disease define who I am. I have AS, It doesn’t have me! The only way to keep from fusing is to keep moving. So that’s exactly what I aim to do. God grace is sufficient in all things, and I know that everything can be used for His glory!
Texas, United States of America