Hi! My name is Cara and I have A.S.
Like many of you, my A.S. went undiagnosed for many years. I was very active in sports throughout my childhood and all through my 20s & early 30s. The first time I remember having extreme pain in my lower back was when I first became pregnant. I was 19 years old. In the beginning of the pregnancy I was in college and stayed active playing volleyball and baseball and waitressing tables to help pay for college. Then as my belly began to swell the pain in my back became way too intense for me to continue with sports or working. So I had to quit sports and my job at the beginning of my third trimester. I was so disappointed in myself for letting the back pain stop me from my work and activities. When I went in to deliver my son, the doctor insisted I get an epidural. This being my first pregnancy I did not argue with the doctor and allowed for epidural. When the anesthesiologist tried to insert the epidural needle into my spine he missed several times and sent painful shockwaves from my lower back all the way down to my left foot. (we didn’t know at the time but found out 20 years later that the reason was because I have an extra vertebrae in my lower back) Well, after the pregnancy my back slowly started feeling better. I got back to my usual activities with sports and work. Then I ran into the same problems with my second pregnancy. I was 22 years old. But this time I was only able to work until the beginning of my second trimester. Again I was beating myself up for allowing back pain to get me down enough to quit my activities. When I went into to labor and delivery I absolutely refused the epidural! After my second son was born I found it was more difficult to get back into my usual routines of sports and work. Eventually it happened but it took me almost two years to get my activity level back to where I thought it should be. Although my back pain continued I tried to stay as active as possible.
As my 20’s progressed, there would be increasing numbers of visits to the ER for extreme lower back pain shooting down my legs and preventing me from walking. Each time I would go in to ER the doctors would tell me it was inflammation and a pinched nerve and that I needed to start stretching out more before and after racquetball, softball, jogging, swimming, and all of the other many activities that I enjoyed. Doc would give me a shot of anti-inflammatories and some pain medicine and send me on my way. Initially these episodes would occur about once a year, maybe twice a year. Then by the end of my 20s and into my early to mid-30s I was in the ER 4 or 5 times a year with the pain lingering more and more after every episode. I had gone to several different doctors and specialists who all did x-rays, MRIs, blood work, etc. and they would all come to the same conclusion…..”you need to be careful and stretch out more before sports activities because it’s causing your sciatic nerve to flare up”. Several of the doctors ran tests for RA and it would always come back negative so they saw no need to send me to a rheumatologist. One doctor said all the pain was from one degenerative disc and he wanted to do a surgery to replace the disc. He said the disc was “dehydrated” and he wanted to insert an experimental prosthetic disc (it was “experimental” at the time, it’s not anymore) where the dehydrated disc was located. Back surgery terrified me so I declined and continued on my pursuit for a diagnosis with other doctors.
Then, in 2007 when I was 39 years old, I woke up one morning with my middle finger swollen up to three times its normal size! It did not seem to be as painful as it appeared and I did not remember injuring it at all so the extreme and abrupt swelling was very perplexing. I made an appointment with my doctor that day and he immediately ran a test for the HLA-B27 gene and it came back positive. He then sent me to a rheumatologist! FINALLY, I GOT MY DIAGNOSIS! Although, it was a relief to finally know what was causing all of the pain, it was also very disappointing to learn there was no cure for it.
I have been through Methotrexate, Sulphasalazine, Humira, and Embrel. Right now I am using Cimzia and it seems to be working pretty good. I get depressed when I want to do things but can’t because of pain or fatigue or because of the fear of pain or fatigue. My kids are grown and gone now and it’s just me, my hubby, and the dogs. However, I have three lovely grandkids who I very much adore and enjoy spending time with. It’s when I’m around the grandchildren that my pain and fatigue really make me angry!! I want so badly to do so many things with them but am limited on what I can do. My husband is a wonderful support system and helps as much as possible. However, he can only do so much as some of it is a battle that only I can fight. All that being said, I know that I am truly blessed. Especially after reading many of the other Faces of A.S. I realize that I could be much much worse and that I need to cherish the mobility I have now and not take it for granted because one day that mobility may be gone.
My name is Cara and I am a Face of A.S.
Oklahoma, United States of America