A.S. Face 0933: Angie Santos
I have been battling AS symptoms since I was about 4-5 years old with what started as knee pain. I used to sit and stare at my little brother in amazement when he would kneel down and play with his hot wheels and I couldn’t tolerate that position playing with my barbies for more than a few minutes because It felt as if my knees were grinding bone on bone. I guess as a child you tend to ignore things and go along with other kid stuff because I assumed it was “normal”. Fast forward to about age 16-17 years old and came the back pain. Lumbar pain and the countless ER trips through the years with the docs simply thinking my back just “gave out” When I was preggers my knees gave out and I fell down a flight of stairs. By the grace of God we were both okay and I had an excellent orthopedic doc who cared for me and after my 2nd daughter was born told me I needed to be seen by a rheumatologist asap. He said women were most susceptible to an autoimmune disease postpartum. I went full blown about 4 weeks after she was born. Then came the tuck and roll out of bed for the last 12 years. Hands swelling and feet pain and si joint pain. I was blessed to find a good rheumy who dx me by the third visit. He dx me with spondyloarthropathy then and through trial and error found some relief at times. Remicade helped but triggered my asthma that had been under control since I was a child. I tried so many meds I was tired. About 3 years ago I decided to join Krav Maga after my husband suggested seeing a huge center near our new home. I had no idea what it was but he thought it might strengthen my back if done properly and most of all use it as an outlet for my constant pain. It literally saved my life. 2 years before I had my dx changed officially changed to Ankylosing Spondylitis due to what my now retired Rheumatologist saw in my thoracic spine. Then I was dx with secondary insterstial lung disease due to the AS . I felt I had nothing to lose. It was the best decision of my life. I struggled for months. I hurt for days at a time but I never gave up because I felt I had some relief. I could forget about my AS pain for one WHOLE hour. One hour that AS could NOT take from my life. One hour that AS could not try to knock me down. My back is still terrible but the muscles are stronger and I earned my yellow belt last year. I had to work twice as hard as everyone else and hold the tears but everyone was supportive because what came easy or hard for them was twice as hard for these brittle bones. I am hoping to test out now that I am in level II classes but I’ve been busy being a grandma the last 18 months so its a bit more difficult these days along with my children older and many more school activities. My husband and children are very supportive and thankfully I have found a new rheumatologist that is starting me on Humira to get my AS under control again. The last year has been hell. Flares that I would not wish on my worst enemy. I have a good team of doctors right now and it has made life easier these days. Right now I’m battling what my new rheumy said were classic “Sausage digits” aka my fingers. lol. I have bony hands so it’s such a funny term. Cant help but laugh. I am fused at L5-SI and spurs on all of my thoracic discs and bridging. Stenosis has jumped in and some scoliosis that the docs cant understand why it was never detected as a child. Beats me.
My daughter who is just shy of 20 struggles with JRA but we help each other and I absolutely refuse to give in to this disease. It is my life. God gave it to me and I’m not letting it consume me. I will pull myself out of bed, with help or without when necessary. Sure, I still use my walkers in the evenings and scooter in the winter when it hits me hardest. But I will continue to keep fighting the big fight. Exercise is a key element in fighting AS. It wont stop it but it helps clear your mind, and keep healthy at the same time. Chronic pain can try to push you into a state of depression very easily. I will not give AS that satisfaction. Not now, not later, not ever. Not if I can help it. I plan on hanging around here until the Good Lord sees me fit to leave God’s green earth. Fixing to hit 45 in 2 months and I am just getting started so until then….AS can kiss my AS … 😉 That’s my story and I’m sticking to it… 🙂
Texas, United States of America