Learning to accept my body for what it is and how it behaves is how I survive daily life with ankylosing spondylitis. It is important for me to listen to my body. When it is feeling better, I enjoy taking a deep breath, walking at a normal pace and having a light spirit. When it is attacking me, I recognize that I need to slow things down and rest, and be okay with feeling upset, frustrated and angry. My body is not my friend and it has taken me over 15 years to fully accept that.
I started having symptoms in 2001, 18 long years ago. One day my body was fine and the next it was at war with me. Every joint from head to toe was experiencing pain and inflammation. It was a very scary time at which point I began meeting with doctors from every specialty under the sun, who tested me for various diseases and conditions (of which I had none). I started the trial and error process of trying a ridiculous amount of medications, most of which caused extreme reactions and I was unable to continue. It wasn’t until 2009 that I found my hero, Dr. David Chesner, rheumatologist extraordinaire. He spoke to me from an authentic place and has been working for over 10 years to help me manage my complicated health situation. By the time I got to him, my symptom list had drastically increased. In addition to the widespread inflammation (tongue, neck, wrists, hands, chest, back, hips, knees, ankles and feet) and pain which accompanies it, I was now experiencing shooting pains in my face and up and down my arms and legs, hives, a burning sensation under my skin, heartburn, severe fatigue and the feeling of malaise which produced the feeling of having a fever and chills, but with no actual temperature.
Most recently, in the past couple of years, I have been experiencing inflammation of my eyes and a severe tightness in my chest from inflammation around my heart and lungs. Also, my situation became life threatening in 2015 when I had a PE/DVT (pulmonary embolism and deep vein thrombosis, blood clots in both lungs and one leg). As my symptoms increased and new ones presented, we were able to focus in on a diagnosis; in 2017, after discovering I had the genetic marker HLA-B27, I was officially diagnosed with ankylosing spondylitis. We have since learned that all of my symptoms, including the blood clots, were all a part of this disorder.
Getting a diagnosis was both a positive and negative experience for me. It was a relief to finally put a label to what I had been experiencing for such a long time. However, when I started learning about the disorder and its complications, plus the fact that there is no cure, it became a bit overwhelming. It has been almost two years since my diagnosis, and I am now in a much better mental place as far as understanding AS. I now have an ophthalmologist monitoring my uveitis, a cardiologist monitoring the inflammation around my heart and am continuing to work with my rheumatologist to keep the inflammation surrounding my spinal cord and other areas of my body at bay. We are currently using Humira as part of our treatment plan and while it has not eliminated my symptoms, it has made somewhat of an improvement.
The most valuable thing my rheumatologist has done for me and continues to do is to tell me that I am not crazy, which is something I felt a lot over the years when explaining the symptoms that I was experiencing. He validates all of my symptoms, and to have a doctor support you in this way means the world.
Most importantly, I would not have been able to emotionally survive this health crisis without the support of my sweet, loving husband, Lou. We have been married for 20 years and in only two of them I was symptom-free. AS has certainly put the “in sickness and in health” vow to the test. He has been with me every step of the way. He is my gladiator, fighting for me, always searching for answers and never giving up. He is my safe place, always there to hold me and allow me to be upset when I am struggling. My love for him knows no bounds.
I guess the bottom line for me is all about mindset. Choosing to live in the moment is how I deal with my AS. There is never a moment for me when there isn’t something happening in my body. That is just my normal. I know some people say they take things day by day, but I choose to take things minute by minute, mostly because my symptoms and flare ups change quite frequently. If I had one piece of advice to give others with AS, I would encourage you all to enjoy those minutes when your body is being kind to you. Spend those minutes giving yourself joy as that is what we all deserve.
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