Big Girl CF Center

I have about three hours before my husband and I pack up the car and hit the road for Birmingham, Alabama. The nearest Adult CF Center from Florida. It's about a four hour drive there and back, and considering my breathing tests start sharp at eight, its our best bet to hit the road early. I am feeling a little nervous and tense because it's my FIRST adult CF center ALONE (without my mom). My mom has ALWAYS stood by my side through the years of my CF issues and not having her go with me this time is a little scary because she always seems to ask the right questions and write EVERYTHING down. I used to laugh at her for doing that as we spoke with doctors but now I understand why and even packed a notebook in my bag for the trip. Born and raised in St. Louis, Missouri we were always able to access hospitals, doctors, specialists and pharmacies within a thirty mile radius, I am realizing now that we were spoiled living in a BIG (bigger) city. I am happy to finally be meeting a group of specialists that can better take care of me down here, but also nervous to hear any bad news, but I know I should be focusing on the good news instead of the bad. After being hospitalized a month ago, I am hoping I will hear the good news that the infection is gone.
Hoping for great news!!!

Won't Stop Till CF Stands for Cure Found

After 23 years of CF, now more than ever I am hearing, seeing and reading about advocates, volunteers and inspirational stories about people who won't stop fighting for CF until CF stands for Cure Found. A lot of these stories have really hit home for me. One of my best friends Lauren Damalas blind sided me with a very touching letter written to begin raising funds for her participation in the TN CF chapter. I had no idea she was so passionate about CF and my well being. Her efforts are just beginning, but I know they wont stop until a Cure is found. Her persistence, dedication and desire give me hope and fuel to keep pushing day to day. Seeing someone so close to me take such BIG steps to make a change has also challenged me to make a change in the CF community. Recently moving to Florida I have been trying to find a chapter near my location to start volunteering and making a difference in my own life. Not only has Lauren affected me so greatly these past weeks, but my sister- in - laws friend has also opened my eyes to being a leader. Colleen started Run for Roses late last year and has made a commitment to run across the US. Stopping to make appearances to raise awareness about CF. She has been directly affected by CF and the destruction it can do to someone. Getting the word out about CF is important, the more who know about CF the more they are willing to help those in need. Everyone is fighting their own battle but what sacrifice will you make to help someone else fight a battle they can't? To help donate to the CF foundation please go to http://www.cff.org/

The Next Chapter

So even though it's been longer than a few months since I have blogged last, it doesn't mean that I have forgotten about you. Since I wrote last I wasn't too sure about much besides the feeling that my life was going no where but down, but after all it only seems to be looking up right now. With a gorgeous new ring on my left hand, hopes for starting college again and moving to a gorgeous state there's not much I can complain about. I feel that I have matured over the past few months coming to terms with a negligence father, a few hospital stays, and beginning to cover myself with medical insurance has all made me look at life differently. I am thankful for the time I get to spend with the people that matter most to me. Life is too short to be anything but happy and surrounded by love and gratefully right now there are no other feelings consuming my heart. I am blessed with great friends and family that support me no matter what and only want to see me happy and succeed, I have been blessed with a great fiance that is truly my best friend and will stand by me through all the tears, joy and adventures. Starting a new life together I know will be nothing less than entertaining and exciting. I will definitely be a busy girl however, I am taking the HUGE step to transition from my pediatric  pulmonologist to an adult CF team that I feel will better assist my needs in advanced treatments and care. However I am more excited than scared for this transition. It's important for me to start making my CF care most important from finding the best doctor's to getting the best insurance. I guess this entry really has no meaning besides the simple fact that the next chapter in my life is starting now and I couldn't be more excited or thrilled to be embarking on a new journey with amazing people that I will always love.