Play-dough and Pebbles

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Tonight was sister bonding time for a couple of hours while my parents were elsewhere. Joyce is 7 and a spunky, perky, and truly joyful kid. Love her to death. Yes she has a play-dough doughnut with caramel frosting, green sprinkles and a purple daisy on her head! We have serious creativity here.

We had just watch Bizarre Foods right before this so I believe it contributed to the theme. Here’s my offering:

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Yep it’s a play-dough Napoleon with an orchid on top!

I love the moments I am able to have like this when I am physically able to spend time with the people I care about. Through the last 3-4 years of being ill I have lost more friends than most people have. It’s hard to realize that most people are unable to understand and consequently deal with the realities that accompany chronic illnesses.

Here’s an incredible illustration of what life is like with chronic pain from
http://kidsbyhand.wordpress.com/2010/08/15/30-things-about-my-invisible-illness-you-may-not-know
(can’t figure out how to hyperlink from the iPhone app…)

“If you want to know what it is like to be in my body, try this for a while. Add a pebble to your shoe. It isn’t much, really, just a little thing. An aggravation in your shoe. I saw a campaign on the web that suggests putting a clothespin on your finger and seeing how long you can stand it. At first, it is a minor pain. An annoyance, really. An irritation. An aggravation, perhaps, if you succumb to anger. But after a while, the pain dominates your thinking if you let it. All you can think about is how long until I can take the pebble out of my shoe. You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower, but when that doesn’t work, you walk faster. You buy better shoes. You lean on a cane for a while. You take Tylenol, and Advil, but the pebble is still there. You try hopping. You try crawling. Still a pebble. Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe. “You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining. “What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? But of course no one else can see it. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say. Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?”

Here’s me hoping that someday I can walk around without the hypothetical pebble’s omnipresence!

Goodnight!

Question: do you understand? What in your life would you like to change? Or, when was the last time you played with play-dough?

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About Rachael Ann

I am a still a teenager but have the body of an elderly person. I have been battling chronic health problems for almost 4 years straight now. I kept saying I wasn't insane and making things up. I was right and it turns out that I have Lyme Disease! This is my way of keeping focused on the positives when the days are long and hard. I don't have all the answers but I keep hope.
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