Ankylosing Spondylitis, the journey has begun...

Sometimes I wonder at what point our lives really begin. Is it when we are born? Is it when we decide to change? Decide to be happy? Is it when we move on? When we grow from something tragic? I feel that these are all moments of new life beginning within. A moment in which we have paved a new path in which to live our lives. I am at one of those points in my life, a point in which I am beginning a new "life." A point in which I will have to live differently than I once did or ever thought I would have to.

I have a spondyloarthropathy thought to be Ankylosing Spnodylitis. About a year ago, I started having intense and reoccurring pain in my hip area. That's, I guess, where my journey and this story really begins. I felt sharp pain that was making me limp when I walked. I went to the doctor and he told me that my hips were out of alignment. He gave me an adjustment, and while there was still some pain from muscle strain, VIOLA! I could walk again. Well, it didn't end there. For many months, I was in and out of his office with this problem, and the pain was becoming more intense each time I went. He believed that I lacked muscle symmetry in my back and core. I began doing a special type of symmetrical yoga called Iyengar. To this day, Iyengar has been a life saving and enlightening practice for me. Despite my dedication to the practice, I still had pain and it was becoming more frequent and severe. I visited a couple Chiropractors, found out I have an 8 degree curve in my low back, had to switch doctors due to insurance, and eventually started Physical Therapy. I had done PT before for my ankle. My PT, after evaluating me, determined that the pain was coming from my SI joint. I began exercises in hope for pain relief and to get back to my active lifestyle. I was told by my PT, my doctor, and later a specialist that the pain was from inflammation or "dysfunction" in the joint. I asked all of them what caused this... I got the same answer... Pregnancy (the hormones during pregnancy can cause the SI joint ligaments to loosen and then fail to tighten back up after a baby is born), infection, or traumatic injury (such as a car wreck). They also see cases of problems in the SI joint in older women, another issue with hormones. I was confused... NONE of these seemed applicable to me. I had a ski fall in which I strained my MCL 9 MONTHS prior to any of the symptoms in my SI joint. I was told this could "possibly" be a delayed onset from that fall. I told them all that I had increased my running and activity for a Triathlon I was training for. I asked if that could play any role in this pain, in this injury as they had deemed it most likely to be. I received another "possibly." I thought that I was active and I had probably pushed myself too hard at some point, just couldn't pin point when... However, I always questioned how friends of mine who seemed to push harder then me didn't have this same response.

Well, I continued my PT and after 4 months, I was frustrated that I wasn't seeing more results. I continued to have flares, a little less frequent then before PT, but they were still happening. The pain was getting worse when I did flare... My PT and I couldn't pin point what was causing the flare and she began to wonder if it was, in fact, a mechanical problem. One day my pain became so severe I could not sit up, stand up, walk, move, roll, or create any movement without the most intense pain I have ever felt. My husband had to stay home from work and I had an emergency appointment with my doctor. She gave me a minimal adjustment and ordered an MRI. She said that it was time to get a better idea of what was going on. I had an MRI of my lumbar spine and my sacrum. The MRI reveled a bulging disk in my low back, and inflammation in BOTH my SI joints. All of the sudden, our course of action was different. My doctor sent over an order for blood work explaining that we had to rule out some other options such as RA and "other inflammatory diseases." After waiting, for what seemed like years, I got the results. I have a rare antigen in my blood called HLA-B27. This antigen "is consistent with Ankylosing Spondylitis" and it was time for me to see a Rheumatologist. I don't know if you know this, but Rheumatologists are very busy people and in early December, they were scheduling out until March. However, after reviewing my file, the doctor deemed me "HIGH priority" so I was on a wait-list and got in on January 8th of this year.

I am currently on an anti-inflammatory and hoping that this drug will improve my symptoms by 90%. If I can maintain this, then I stay away from biological drugs (for now) that attack my immune system. My immune system is what is causing this inflammation in my SI joints, and if it AS (as we believe it to be), then it will work its way up my spine. The body responds to the inflammation by fusing the joints and the spine together. I must get the inflammation under control so I don't lose the mobility in my hips and spine.

The next step is to meet with a GI and rule out some conditions that may be linked to my symptoms and be a little more sure of the path of proactive treatment for AS. What is most important is that I keep movement in my everyday life and do range of motion exercises everyday. I am working to make this second nature every morning and every night. My goal is to bring awareness to this disease and let those closest to me know that I am not going down without a fight. I am a fighter and I like to beat the odds. What better chance to beat the odds then this? Fusion happens in most cases with this disease, but there are so many drugs they have found within the past few years that seem to be making a difference and are, hopefully, changing the long term effects of this disease.

I don't want your pity, your fears, or your sadness. I want your strength, your support, and your desire to learn about a disease you or I would have never known existed if I hadn't had it happen to me. This will be a scary and emotional journey for me along the way. Don't tell me "It could be worse" or that I "will be okay." Tell me you are here for me and that you care enough to know about the battle. Challenge yourself to bring early awareness to others who may be fighting this. The earlier its detected, the more likely fusion will be fought off and kept to a minimum.

Now you know. I debated for a while how public or private I wanted to be with this, but I feel that we are strongest in the battles we have the most support. Please educate yourself, and feel free to follow me on my journey. I will use this as my outlet, a way to update friends and family, and as a way to record my physical and emotional journey. Remaining optimistic...

Amanda