A Word from Hope.....

Hey everyone this is Hope! I thought I would write a little something on here.
First of all I want to say thank you to everyone who is and is going to be apart of this walk. It means so much to me. And a HUGE thank you to the amazing Rachel Leonard! You are one of my dearest dearest friends, and this is truly the most amazing thing anyone has done for me. No words will ever express how much this all means to me. So thank you so very much, you are amazing.

Living with Cystic Fibrosis has been quite an adventure I guess you could say. When I was younger I was never really that sick, so I didn't take care of myself like I should have. I tried to ignore the fact that I had a serious disease, and I just wanted to be normal like everyone else. Finally when I was 15 I went into the hospital for my first of many yearly visits. I remember walking into the hospital with my pillow and my suitcase, thinking that this is now what is "normal" for my life. And I was so scared.
Since then I have been in the hospital every year for what they call a "CF tune-up", basically they just fill me up with meds and i do tons of breathing treatments and respiratory therapy. I don't really mind it anymore, because I know I need it and I can feel when I need it. This last time was the longest I was in, 2 weeks (which is actually normal). I usually feel so much better after the tune-up. But this last time I just didn't feel as good as I should have, and I knew something was wrong. Since then I have been into see my doctors and my lung function wasn't as good as it should be just getting out of the hospital. And I have been feeling weaker and weaker. Two weeks ago when I went in for my check up, he said they found a bacteria that they have been culturing and testing since I was in the hospital. The bacteria is called MAC (well thats the abbreviation, I don't know the medical name). I have had MAC before when I was 17, and I had to do 12 months of intensive treatment. They thought it was gone, but now they say it just went in remission. MAC is related to tuberculosis, but is not contagious. But it is a very serious and somewhat dangerous bacteria, because it attacks and destroys the lungs in a way that no other bacteria does. So finding this out it answered why I hadn't been feeling that good, and why my lung function has been decreasing. Now I have started treatment for this bacteria, and I will be doing the treatment for 12-18 months. This time they are pills, last time it was IV. So I am happy about that. So now I am taking 3 new antibiotics which is an extra 7 pills a day, which puts me at approximately 29 pills a day.
When the Doctor told me the culture for the bacteria was positive I felt very discouraged and beaten down, and part of me didn't feel like fighting anymore, because no matter how hard I fight or how many treatments I do, I still get sick, and will continue to get sicker and sicker. But then honestly I thought about all of you, and I thought about how hard you are all fighting for me, and that gave me strength and it gave me hope. I know I am not alone because I have each and everyone of you, and I have something to fight for. Your love and support is more then you guys can imagine. I feel so unworthy of all this, but I feel so grateful for it.
My life has been hard, but it has been so good. I have an amazing family. And I am married to the greatest guy in the world, who takes care of me and loves me for exactly who I am. And I have amazing friends who are always there for me, and who always make me laugh and make me love my life. I have been able to work and do things I love, and I have been to travel to the other side of the world twice. And even though my health is declining now, God has been very gracious to me and has blessed me, because there are so many CFers out there who suffer so much more then me, and some who have not had the chance to live the beautiful life that I have been able to live.

So again I say thank you. Thank you for fighting for me and for giving me a reason to fight. I love you all and I am so honored to have you walk by my side on the beautiful day of May 8th. :)