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What was I thinking?

What was I thinking? I was supposed to post to The Fight Like A Girl Club over a week ago. As a power team writer, I write on topics related to the disease I fight, Ankylosing Spondylitis, and post once a month. Unfortunately I’m fighting AS which means that I don’t know when I’ll get sapped of energy or deal with a flare of pain. When it hits I may not be sidelined as often as I was before I started Remicade, but I will slow way down and if I am not aware that I need to slow down, I can get very sick. So forgive me y’all – I’m pooped!

What I’d like to tell you all about in this post is that I’m also fighting to keep my year-long awareness campaign alive by creating a piece of art everyday in the form of an apple. If you haven’t seen my project, please stop by my blog, The Feeding Edge and take a look. Six months ago I came up with an idea that I thought would get some attention – if I could pull it off. A piece of art in the form of an apple, one a day for an entire year! So far, so good and the idea seems to be catching on especially with the recent partnership of a small group of four passionate AS activists. We are an artist, a mom and school teacher, a research scientist, and a Licensed Master Social Worker! Our Hope & Apples AS Awareness Campaign launched on April 1st to kick off AS awareness month. We are collecting stories and apples to raise our collective voices and come out of the darkness that surrounds this disease. I am so excited to take this next step with these amazing people, but how will I manage it all?

Some days I feel that I’ve put too much on myself and wonder how I will make just one more apple and find the strength to post one more thought. I wonder – what the heck was I thinking?

Well, I’ll tell you what I was thinking.

  • I was thinking that AS affects 2.4 million Americans and approximately 33 million people world wide.
  • I was thinking that if you say to a stranger or a friend or family member for that matter that you have Ankylosing Spondylitis you get a blank stare. To people suffering with AS – this type of reaction makes us shut down and stop talking about the disease. We will not be quieted any longer!
  • I was thinking that if you attempt to explain that AS is somewhat like Rheumatoid Arthritis but it primarily affects your spine you get responses in return like “yeah, my back hurts too” or “I bet you could fix that with your diet.”
  • I was thinking that I’m one of the “lucky” ones with AS – I have access to a chemotherapy drug that I get via i.v. infusion every 5 weeks that has given me so much of my life back.
  • I was thinking of a bright young man in India who I converse with via Facebook who just underwent his second surgery in two years and is hoping to be able to walk in a couple of weeks for the first time in years, but who might have avoided all the agony and disruption from his college studies if he had been able to afford the same drug I take.
  • I was thinking of the poignant stories and moving apples that are beginning to pour in to Hope & Apples.
  • I was thinking about how spondylitis makes lives so very challenging and for some utterly miserable.
  • I was thinking about all of the people that perhaps I could help in some small way.

Maybe, just maybe, a small group of passionate people can “Stand Tall” and change the fact that people don’t know about this disease.  I recently found a quote that sums it all up:

“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it’s the only thing that ever has!” Anthropologist Margaret Mead

This small group who have joined with us is growing ever larger and is made up of some inspirational people:

Amy who states: “Once I found out what AS was, at first I was really scared and upset. I couldn’t stop thinking about the future and what would happen to me. I’m only 21, I’ve barely lived my life yet, and I was being told that I have a disease that was slowly attacking my body and eventually going to fuse parts of my spine”

Liz is a creative and talented mother and artist, who is so grateful for a place to share her story, her work, and her pride in her children.

Hedy shares “I wake up in the morning feeling like a truck ran over me. I am stiff, but I think of all the people in the world worse off than me. I get up with a half-smile on my face to tackle another day in my “AS” life.

Kate, a strong and amazing young woman whoes “story with Ankylosing Spondylitis (AS) has taken so many turns from intense denial and indecision about medications, to gradual acceptance, to wonderful new doors holding new friendships, interests and finding strength amongst it all.”

And of Jim with his sage words of advice –  “Once diagnosed, AS is a disease that will be at the forefront of your life – with you always and forever it is.  The key to a happy and fulfilling life will be to accept it, endure it, and with all your soul keep love in your heart.”

What was I thinking?

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4 comments

  1. Jenna you summed it up perfectly

  2. I love your determination to help the entire AS community out, Jenna!

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