Ankylosing Spondylitis

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I’m Not Sorry

by 8 Comments
Mar
17
2011
Not Sorry

When a person lives with Ankylosing Spondylitis or other chronic illnesses, we find ourselves holding on to hope, facing despair, and constant challenges. We embrace the hurdles. First, because we have no choice knowing we can never give up. Second, and no less important, because we are willing to carry the pain in hope that our loved ones will never have to endure the same obstacle. I find myself apologizing to others often. I'm sorry is uttered to my children when they want to go for a walk, because that day my hips are limiting my abilities. I repeat those two words when friends want to go for lunch, the school needs volunteers, or family wants to travel. This could be due to my medication or just pure exhaustion. My pain tries its best to slow me down. I  respond with an apology in hope that an understanding ear is on the other end of the conversation. Many of you know I love making lists. I'm not sure if it's because writing it down confirms my feelings, or if it's just an … [Read more...]

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The Balancing Act

by 8 Comments
Mar
02
2011
The Balancing Act

Life is not predictable. Some days I wish I knew exactly what to expect and where my life was headed, because then I would be prepared. I would brace myself for the impact or be ready with champagne for the celebrations. I was not prepared for living with chronic pain and illness. I was not prepared for the fight it takes to reveal this is part of my life. And, most certainly I was not prepared for my life to be critiqued by others. But now that I have survived the crisis years, the years of being angry and uncertain and ill, I choose to turn my life into one of belief and action and dedication to a purpose that, like it or not, chose me. I now live in faith. I live in faith that my life will unfold as it should and as it is meant to. I hold a deep belief that everything happens for a reason and my path, although difficult at times, has been and is exactly the road I’m meant to follow. I do envy people who say their lives are in balance. What does that mean anyway? Is it … [Read more...]

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The Game of AS

by 5 Comments
Feb
14
2011
board-game

I like to compare my Ankylosing Spondylitis diagnosis to your average, everyday board game. I have been to more doctors in my 33 years of existence than most people will ever see in their whole life. As I meet more people with not only AS, but other chronic illnesses, I realize many are, or have been playing right along with me. When you open a game you have never played before, the first thing you do is grab the directions to understand the rules and what the particular game is all about. When it comes to AS and many other illnesses you open that box and find they forgot to include the instructions. For those of you who do not know what "our game" is, let me try to explain. You discover a manual, but you quickly find that this game is going to be a rough one. STEP 1: Pains in (fill in the blank with whatever you are experiencing) with no reason as to why they suddenly occurred STEP 2: You go to "X" number of doctors and eventually get told you may be crazy because your symptoms … [Read more...]

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What Might Have Been

by 22 Comments
Feb
03
2011
What Might Have Been

I had a dream the other night that has really stayed with me.  Does that ever happen to you?  You wake with it vividly inside you and it wanders about your brain until you have that “Ahhh” moment where a piece of it clicks into such focus that you instantly understand why it won’t let you go. I had a dream the other night. I could feel the warmth of the sun and the breeze ruffling and lifting my skirt.  I was walking up a long hillside through tall grasses and wild flowers and the only sounds I could hear were the hum of the bees and the songbirds chirping their joy at the beauty of the day.  It was one of those dreams where everything was perfect – the place you go when you are trying to escape everything.  Perhaps that hillside is how I envision heaven – it did appear to me from somewhere.  I reached the top of the hill with my two kitties: Tagger, an orange mackerel with big graffiti swirls on his sides, and Bittie, a stout little black and white girl, who I … [Read more...]

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When Ankylosing Spondylitis Chose Me

by 2 Comments
Jan
17
2011
A light at the end...

My name is Amanda, and I would like to welcome you to my world of the daily adventure called Ankylosing Spondylitis. I was diagnosed with AS in October 2008. My first reaction was basically...I have WHAT? What does this mean for my future? I had never even heard of this crazy unpronounceable word and now I was diagnosed with it. As I sat in the doctor's office listening to an explanation of the disease, a sudden sense of relief  came over me. It answered years of unexplained pain. I had so many doctors through the years telling me my symptoms must have been in my head because they didn’t make sense.  There were no visual signs or easy explanations of the pain I was going through so they would write me off  and send me on my way. I was passed around like a deck of cards for years to only end up with a losing hand until that moment. A diagnosis that could try to control me definitely scared me but, at the same time, gave me a reason to never doubt myself again. I realized … [Read more...]

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