Since I was 14, I would notice upon picking my little sister up that I would have to put her down immediately due to a pain so intense in my lower back and legs that it would leave me unable to move for days. This kind of pain continued for the next two years. This prompted my visit to a neurologist. Because of my age, we thought it was a herniated disc that would be cured by surgery. I had the surgery at the age of 16. The surgery did not stop the pain because here I am 19 years later still in pain.
After years of debilitating pain, I went back to my neurologist after an MRI showed that 5 of my discs had gone bad in 10 years for no apparent reason. He could provide no physical explanation, so came the blood tests. The blood tests showed that I had a high rheumatic factor and that I tested positive for the HLA-B27 gene common in Ankylosing Spondylitis sufferers. Because of this and the fact that my spine and hips were deteriorating, my neurologist sent me to a rheumatologist. I didn’t even know what a rheumatologist was, but I knew I was scared.
After viewing my x-rays, blood tests, and MRI results; I was diagnosed with Ankylosing Spondylitis. This was a hard diagnosis for me to take because it was incurable and progressive. I also thought about my grandfather that had AS.
From the time I was little, my grandfather stooped over to a degree that you could not help but notice even as a child. It pained me to see him like that. Before he passed away, all of his discs had fused together except in three areas. He hurt so badly that he would cry and go to the hospital to be checked in. His heart valves were blocked and he had only 30% usage of his kidneys. Ankylosing Spondylitis is systemic and spreads to your organs. He also had difficulty breathing at times. His quality of life was very bad. I am only 35 and I know how he feels.
Enough thinking time, then came action mode. I had to try something, so I continued taking pain medication and anti-inflammatories to no avail. I tried Cortisone shots and oral steroids. I tried physical therapy, exercise, and rest. I improved my diet and took some of weight off since my torso would sometimes feel like it weighed 200 pounds. To my horror, none of these things were working for me. I was also having to visit my rheumatologist quite often. Every time I would visit him, my hip and lower back would show more damage than the previous visit. This damage cannot be reversed. I feared the rate at which I was progressing. Then came the biologic drugs.
For those of you that don’t know, Remicade is an infusion that can help alleviate the symptoms and slow down the progression of AS. The infusion helped me in some ways. You felt like you were actually doing something to help yourself even if you are just sitting there with a butterfly in your arm for 2 hours every 6 weeks. I didn’t have as many debilitating days as I used to that’s for sure. I still would still hurt and I was tired a lot. Now, I am on Enbrel, a weekly shot. It has helped a lot, but sometimes it stings thinking I have to do them for the rest of my life. I still have my bad days, but most days I can walk like a normal person, work out, and just try to be me and not me with AS.
The drugs have helped some of the physical factors, but the emotional factors leave scars. I am still scared everyday that I wake up that I will hurt badly that day. I still worry about the holidays or special occasions because one can’t tell how I will feel that day. I can’t plan events too far ahead of time because I might hurt too badly that day to go. I am not even going to mention the fear of what is happening on the inside of your body. I know that having to live like this is not fair, but all you can do is try to get used to it and have people around you that support and love you. You also have to try to be yourself as often as you can. Some days you can’t and that is okay. Live for the days you can.
Colorado United States of America