Greetings My People,
Take a breath, a moment and please read this.
I know this time of year I’m a broken record. “Join Rockin’ Weebles: Weebles Kick A.S.!” All I am trying to do is shed some light on the disease that I and so many others have. It isn’t going away. It’s scary for us. It gets worse every day. Every day we learn of other diseases/complications we have to be aware of as our body attacks itself.
Every now and then we go through the grieving process for aspects of our life that we once enjoyed vanishing beyond our control. Not to mention the friends and family that drift away because we can’t seem to get the time to spend with them.
We are always going to this doctor or that doctor. Trying to go to work and maintain a social life and still function through the pain. Through the haze of medications and general brain fog. Trying to put on a false face of “Yes, I’m okay.” “Sure, I can help with that” all the while trying to calculate the amount of energy it is going to take and how much stress it is going to put on your body.
This disease takes so much away; I have had friends commit suicide, others consider it daily. Some of us lose our jobs, our marriages, our children, our safe spaces, our support systems, our mobility and our independence.
This walk isn’t just another awareness or fundraising event. This is an all out effort to get those of us who struggle with mobility to work together and get moving. Counting our steps is an achievement for us. Every Step Counts! – is a reality for us.
We may not be able to do 10,000 steps a day, if I do more than 5000 I can’t function for days after. All we are asking is that you take the time to learn about it, share it with someone else and count your steps. Get moving for those of us that can’t. Ankylosing Spondylitis is more prevalent than ALS, Cystic Fibrosis and Multiple Sclerosis yet there is so little being said or done. It takes an average of 10 years for someone to be diagnosed.
That’s 10 years of disease modifying care they miss out on. We can’t cure it right now but we can try to slow it down, address the symptoms that emerge every day. Yes, we would appreciate it if you raised funds along the way.
For research, for the new volunteer non profit organization that is behind this walk, for the organizations world wide that help educate and support doctors and patients alike, and for the organization that reaches out to those that feel alone in this struggle by providing “care packages”. We would appreciate it but we don’t require it.
We just want, no I just want someone to say “I hear you and I am beginning to understand. How can I help?” Ankylosing Spondylitis isn’t all that I am, but when it overwhelms and takes over my life for days and weeks at a time – it seems like it. Some times the person that I am gets lost in the disease that I have.
Please consider helping us with our mission to raise awareness for Ankylosing Spondylitis with a donation. My Causevox page is at http://walkasone.causevox.com/heather-stewart.
Thank you for taking the time to read this.
Walk AS One Director of Fundraising and Sponsorship
Greetings My People,