I HAVE A.S.

I have a disease called Ankylosing Spondylitis

However it seems nobody knows or agrees about what it is
And I have to try to decide what doctor or article I believe more
Very often I come to terms with something only to find out later they were wrong
Everyone offers me advice or what they would do but rarely offer me compassion

And often they distance themselves or walk away because of the changes in me

Nothing hurts more than that because I am not in control of what this disease does to me

Kindness and understanding are the rarest gifts given to me though I try my best to give

You have no idea how hard I fight every day not to be bitter but the hardest fight is to

Love myself because this disease is robbing me of my value in society

Oh, some will argue with me about that but in the quiet of the night I know it’s true

So, each day despite the pain, depression and struggles I live behind a mask

I smile through the pain, battle through thoughts of suicide, living a lie

Not many people care, they half listen and nod absently while I try so hard to

Get them to HEAR me, just to acknowledge my pain and I need them to

Show me that it doesn’t matter that some days I am not the COOKIE you used to know

Prove to me that I am valuable and that you want me in your life

Otherwise why am I fighting to live a life that is so difficult and painful

No one wants this life, no one expects this life, but this is the one I have

Don’t you understand how much I want to be normal. do you have any clue

You don’t realize I am risking death from the side effects of drugs just so I can be

Like you… normal, happy, without pain and free to just be….

I want to be FREE of pain, thoughts of suicide, depression and judgement

To be able to just jump out of bed in the morning, and begin my day

I don’t want to have the THINK out my every move, so I don’t cause any MORE pain

So, just treat me the way you want me to treat you, Kindness goes a long way for AS

In honor of Michael Smith and his creation of April Awareness Month, in honor of all of those who lost their battle, are battling and will battle this invisible disease and will one day say I have a disease called Ankylosing Spondylitis.

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© Cookie Hopper and The Faces of Ankylosing Spondylitis , 2011. There is an implied agreement and permission granted to Cookie Hopper and the Faces of Ankylosing Spondylitis that the participants photo/story will be used only in order to raise awareness for Ankylosing Spondylitis. There will be no monetary value gained by either party. The Faces of Ankylosing Spondylitis agrees to uphold the integrity and honor of each individual’s story when doing projects to raise awareness, and will be a mutual agreement of both parties involved. Once a photo & bio are submitted to Faces of Ankylosing Spondylitis ( Cookie Hopper) , heretofore known as "Faces," the individual submitting to Faces gives permission for Faces or its representatives or organizations coordinating with or whose services are retained by Faces or the invisible illness or Ankylosing Spondylitis community to use the image/likeness, name, & your bio or portions of bio as written, from the moment of submission, for as long as Faces exists as a website and/or organization. All submissions become the property of Faces, and upon submitting, participants grant full rights to the submitted images & bios to Faces, and the right to use & name in connection to activities of Faces, from now into eternity, in all forms of media, including new media, and agree that they are the property of Faces from submission until dissolution of the organization." Once included the removal will not be possible due to being number, but every possible action will be made to change any information if you feel the need for it to be. Unauthorized use and/or duplication of this material without expressed and written permission from this blog’s author and writer of the individual story is strictly prohibited and legal recourse may be taken in the event of this happening. Excerpts and links may be used, provided that full and clear credit is given to [Cookie Hopper] [individual author of the story] [The Faces of Ankylosing Spondylitis] with appropriate and specific direction to the original content. COPYRIGHT and TRADEMARK NOTICE ©2012. There are underlying copyright interests in the various works of authorship associated with this the faces of ankylosing spondylitis. These copyright and trademark interests may not be reproduced and redistributed, with or without alteration in whole or in part, unless prior written permission provided by Cookie Hopper of Alvin, Texas US 77511, along with the individual author of the story. Trademark name “The Faces of Ankylosing Spondylitis” and " I Am The Face Of Ankylosing Spondylitis" name has been approved and acquired by Cookie Hopper February 10, 2012. Others wishing to use this name or logo are hereby requested to contact the owner Cookie Hopper to discuss their interest before doing so. The Faces of Ankylosing Spondylitis Trademark number is 40671 The stories submitted may not be used without the original author’s permission, along with Cookie Hopper, which you may acquire by submitting a request to Cookiehasas@aol.com. The phrase I am the face of ankylosing spondylitis and the phrase the faces of ankylosing spondylitis are protected under the copy right and trademark laws. By submitting your photo & bio to Faces of Ankylosing Spondylitis (Cookie Hopper) you enter into a legal and binding agreement on both parties side. Cookie Hopper agrees there will be no selling of the stories or monetary value gained. Cookie Hopper agrees to uphold the integrity and honor of each individual’s story when doing projects to raise awareness, and will be a mutual agreement of both parties involved. This site is protected under the Trademark and Copy right laws. 40671 as of January 2012.

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