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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...

Monday, March 18, 2013


Hey everyone... I know its been a while since I've last updated, so I am very sorry about that! It's been a long, difficult past 4 months. I've been in the hospital more than out; 2.5 months of the past 4 have been spent sitting in a hospital bed with a GI bleed. I was just admitted again last night to the U of MN for several reasons. I have not been able to do any airway clearance due to abdominal pain and nausea/vomiting. I've hardly been able to keep anything down; whether its water, juice, or soft foods. Dehydration is also a factor.

I feel like my doctors don't care at all. I was told to stay out of the ER at my last clinic appointment and that I would just have to learn to live with my symptoms. They are refusing to give any pain or nausea medications because "they will shorten my life." I would rather feel better for a shorter amount of time then be miserable for longer. I've never been as angry with doctors as I am right now! It feels like they just don't want to try to figure out the problem anymore, which is doing nothing for my mental health.

Because of the attitudes that my doctors have, I am starting to not care how much longer I am around. I am more than miserable ALL the time. Nothing I am able to do is working. And the doctors are not doing a single thing about it... I am near tears ALL the time because my abdominal pain is so bad. Every time I vomit or cough the pain doubles. I've tried the only other hospital in MN that treats my issues, but they won't do anything without a referral and my doctors here are taking their sweet time.

I will try my best to keep you updated more and let you know how I am feeling and what is happening.