Saturday, May 7, 2011

World AS Awareness Day

So today is World Ankylosing Spondylitis Awareness Day, we call it AS for short. AS is an autoimmune disorder. It mostly manifests as inflammation of the spine and joints and is a form of arthritis. The two words together mean fusion of the spine. It's a pain in the neck - literally.

AS is something that has been a part of my world and a part of my vocabulary for the last 20 something years. It has been both enabling and disabling through out the years. With time I have several joints that are completely fused. That means they don't move, twist, turn, or bend. There is no cure for AS. For years treatment only addressed the pain and not the progress of the disease. In the last decade treatment options have majority improved treating the progression of the disease by counteracting that over acting immune system. The progressive treatment does nothing for already fused joints. So there are things I can't do and will not ever be able to do again. There is constant pain and a fatigue that slows me down more then I would like. That's the disabling part.

The enabling part is harder to specifically state in a way folks can understand but let me see if I can give it a try. AS gives me a power and strength that I don't think I would otherwise have. The things I have survived and walked away from would have broken a weaker woman! Imagine all the stress of everyday life. The universal things that everyone deals with such as finances, relationships, work, school, etc. Add to that chronic pain, medications, doctors, crazy attitudes of people who don't understand, and constant self checks to see if I can physically do the little things everyday things we all have to do. There is a feeling of accomplishment I get to feel when I realized I pulled off a minor miracle! Getting through the work week, adding in a travel trip and juggling all the tasks of a multi task job by the way is in fact pulling off a minor miracle. In my spare time, by the way, I try to volunteer my time and/or money. I believe everyone has something to give.

AS has also enabled me to shift through the BS and find people in my life who are both open minded and supportive. I've found in life there are people that get caught up in the mundane content  of everyday life. I don't have a lot of time to stress about little things or time to worry about what others think. Having a disabling condition automatically puts you on the fringe in our society. Being on the fringe has a lot of freedom. If you think less of me or not at all I get to comfortably live my life without having to wait for your approval. I get to date the man who likes me for me not the shallow one only in it for what I can give him. My friends are true friends who recognize that love and friendship can't be bought or sold. Don't get me wrong I can and do believe in bringing the cuteness and I still whine when I have the flu. I know, however, it takes a hell of a lot more than a bad hair day or the sniffles to break me. How enabling is that?!

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