About Me

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I'm Amber... Born July 15. I was born with a genetic disease called Cystic Fibrosis (CF). CF is a progressive disease of the lungs and also affects the digestive, reproductive, and endocrine systems. All my life I have been a fighter. I've had to fight for something most others don't even think about, to live and breathe from the day I was born. I'm stubborn and I can be a huge handful. I'm very strong willed, but easily pleased. I love putting a smile on peoples' faces and making them laugh. I believe in second, and sometimes third, chances. I wear my heart on my sleeve and I tend to trust too easily. My family and friends mean everything to me. <3  I try hard not to judge people because I hate when others judge me. I am who I am and that's all there is to it, but that doesn't mean I always like who I am...
 

Sunday, December 1, 2013

I was recently asked what the hardest part of having CF is. For me, the hardest part is wanting to go out and do all of the things I want to do, but being restricted because the physical energy just isn't there. I could have all the mental ambition in the world, but without the physical part not much can be done.
I wrote a post within the last week about the days I was grateful for. The days I don't experience often. The days I can do what I want to do. Well, these days are the complete opposite, and are what many of my days are like.
On days like this I have to set my alarm a half an hour earlier because it takes me that long to gain the strength to get out of bed. Did I take a shower today? Nope. All I did was throw my hair up in a ponytail, slap on some mascara so I don't look like the walking dead, and jump into some comfy clothes. 
On days like this I have to always be aware of where my rescue inhaler is or if I have extra change for a candy just in case my blood sugar drops unexpectedly.
I have to ask for help to do my laundry because I cannot carry my clothes basket to the washer without gasping and coughing; and forget taking the clothes out of the washer and putting them into the dryer. I'd be sitting there for an hour trying to catch my breath because clothes are so much heavier when they're wet.
The thought of having to climb even the four front steps to get into my house is a terrifying one.

I recently read a blog post dealing with what its like to live with an illness. It helps to explain how it feels to a healthy person. Its called The Spoon Theory. I will link the site here. But if you have 5 or 10 minutes, check it out. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/