Tuesday, February 26, 2013

17 and angel wings

“Death ends a life, not a relationship.” 
 Mitch Albom, Tuesdays With Morrie

At the age of 17 i lost a friend, not only a friend but a cyster. Someone who is close to me and I love very much. Cystic Fibrosis is an ugly disease I cant express this enough to those of you who have no idea what this disease can do to a person let alone their family. It is awful. Stephanie was 17 and was a bright light in a dark disease. She was the kind of person you would meet and find yourself wanting to know her better. She was quite and kind, a beautiful smile that at time was timid  and weak from the pain of CF but she never complained. Stephanie was a proud Aunt, something her and I would talk about how much she loved Andrea and wanted to live to see her grow up. She was many things but she was most importantly loved. She was loved so much and she loved everyone; her life was filled with love even in the last moments and her last breathes. To her family who I always have had such a huge amount of respect and love for I hope you know how much stephanie is loved and how you created a beautiful person inside and out. She always talked so much about her family with love and appreciation for all they went through. I cant imagine the pain you have right now and I wont pretend to understand the pain of loosing your baby but please hear me when i say how much my life is better for knowing stephanie and for loving her. I promise i will always keep her in my heart.

Dear Stephanie
   Im really at a loss of words right now, usually i always have something witty and fun to tell you but tonight i failed. I cant imagine how beautiful the view is from heaven, even on a cold night like tonight it must be breathtaking. How does it feel to breathe? Is it everything we always hoped for? I hope you ran through the gates of heaven and right to the arms of Aimee. I know you miss her and i think ill miss you the way you missed her. You were a close and dear friend to me and i cant believe at only 17 you are gone. I know how badly you wanted this transplant and the chance of a new life with new possibilities but i think you will accomplish so much more in heaven.  Add me to the long list of people to check in on and remember how much i love you x0x0x0 

Saturday, February 16, 2013

Just an introduction...

I will write a better more through interdiction soon.

Hi my name is Jessica. I'm 26 years old. My life revolves around cf and the day to day care. I currently weigh 104 but at my highest at 1year ago was 120. I culture 3 bugs pseudomonas aspergillus and also achromobacter xylosoxidans. My lung function is a solid 55% and sometimes better. I struggle to breathe and walk at the same time. I cough so hard I pull muscles and constantly vomit. My day to day routine is different every day mostly depending on how I feel. A good day is marked by a good shower with no vomiting and the ability to get ready without needing a nap.
I think I'm at the point right now where I need to get serious and start taking things to a new level but emotionally and physically I can't right now I'm weak minded and weak spirited. I need motivation and I need some sign of hope.
My name is Jessica. And even though it sounds like my life is difficult; it's a lot better and more stable health wise then some others I know and care for.
We need this damn cure.


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