I Look Like Them

Cystic Fibrosis (CF) is a physical disability but cannot be seen. It plagues every day and every action. It makes you rethink every single move. You end up asking yourself, "how badly do I need that glass of water on the counter?" Something so simple can throw a CFer into a 30 minute coughing fit. However, we don't look like we are disabled. Sure, most of us look like we have an eating disorder and dark circles under our eyes. But besides that, unless we tell you we are sick, the general public would never know. Ever since I was a young child I was told I was the "poster child" for those living with Cystic Fibrosis. I always took all of my medication. I always did my treatments. I was very active. I ate great with no weight problems. I did everything I could possibly do to stay healthy. Because of my compliancy I was rewarded with praise that I never looked like I had CF. I didn't have dark circles under my eyes. I wasn't extremely skinny. I didn't have any scars on my body from surgeries. I didn't have clubbed fingers. I grew used to hearing I don't look like them. For that, I was very proud. As I grew older I noticed people would ask me every once in a while if I had CF. I realized I am starting to look like them. I became self conscious about this. After my transplant I have noticed I have been asked more than I ever have before my transplant. Last night I was in Walmart out of my hometown with my friend Leah. Shopping for a few pageant items, a lady was looking at coffee. We walked by the coffee and I made a comment about how I thought Macadamia Cookie coffee sounded very unsatisfying. The lady asked if we saw any hot chocolate and we helped her and her daughter look. We didn't find any but before we parted she asked me, "May I ask you a personal question?" With no shame in anything I replied with permission. "Do you have Cystic Fibrosis?" And with that question I saw Leah's jaw drop. I smiled and said "Yes I do. I'm actually almost 5 months out of my double lung transplant." With excitement and gratitude she praised the Lord and hugged me. She went on to tell me how she lost her son to the battle with CF. A harsh reality we CFers face is that we don't live very long. The other woman asked how she knew I had CF. She said because of my voice, my fingers, and my attitude. I said "there's something about CF, we just know" We exchanged contact information and carried on our shopping separately. I realize now that in the CF community I do look like them. I am proud of that. It's a beautiful thing to realize you're not alone in such a terrifying life. There's nothing easy about CF but to know that I have the complete support of the CF community is satisfying. I know I have support from many many more people, for that I am grateful. But it is different coming from people experiencing the same life. It's nice to be reassured I am not the only one.
XO- A

2013 is Over

With it being so close to a new year I feel obligated to express my feelings about my year. How incredible, terrifying, scarring, relieving, unforgettable, liberating. If there is any year that I could mark that I grew the most, I would pick this year. My year started off with an infection and hospitalization, great start right? Oh, and was in the hospital again for my birthday. I was offered to speak at a Family Educational Day for Cystic Fibrosis in January. I was breathing at 46% at that time. After speaking I was offered to become a motivational/educational speaker for Cystic Fibrosis. In February I was hospitalized again. March I crowned a new sister in the Miss America Organization. My time as Miss La Paz County 2012 was over and Amy Watts became Miss La Paz County 2013! I was hospitalized again in April. During this time I had to drop all of my classes in college. Feeling heavily discouraged after dropping all of my classes for the 3rd semester in a row, I signed up for 2 summer courses. I continued to compete in April, once for Miss Mohave County 2013 and Miss Southeast Arizona 2013. Both of which I did not win. In May I went to San Diego, California to speak at a convention for Cystic Fibrosis. Although not at my healthiest, I enjoyed celebrating my boyfriends birthday along with speaking to great people. Falling very ill, I landed in the hospital again over Memorial Day weekend. I then did not come home for 41 days. Through June and most of July I was admitted into Phoenix Children's Hospital. After many sleepless nights and painful days we learned I was heavily infected with a fungal infection. We used the strongest medicine to kill the fungus and we got no where. I returned home with no answers, now breathing at 32%. I flew to Chicago at the end of July to be in an educational video for Cystic Fibrosis. On my way home I was hospitalized again, but now in extreme distress and in the ICU. The month of August will have changed my life forever. I decided and agreed to go through with a double lung transplant. I was then breathing at 20% and getting worse every day. Half of August, September, October, and half of November my life was on pause, recovering from my life saving surgery. November was very honoring. I was to be a bridesmaid for one of my best friends, Kati. December was such a relief to just enjoy home and relax with family. Through my whirlwind of 2013 I managed to meet incredible people, have unforgettable experiences (good and bad), and gained a new life and new perspective. My goal for 2014? Win another title and go to Miss Arizona again, maybe complete a book, possibly finish my 501c3 non-profit organization paperwork, stay in school, get back into work, use my new lungs to my advantage and hit the gym. I wake up every day, just simply amazed that I am still here. My gratitude to so many people is overwhelming and too long to list names lol! Something I am still getting used to is thinking about tomorrow. I now have a tomorrow and have everything to look forward to in 2014. So with that being said; 2013, you've been great and horrible all at the same time. There are no new beginnings, only pushing forward. All things are possible!
XO- A