One Year of Hell

I have just about had it, but I have no other direction to go. It has been a full year since my life long nightmares came true. Here's my year summed up:

1. I was in Phoenix Children's Hospital for June and July of 2013

2. Home for 2 weeks

3. Double lung transplant at St. Joe's August of 2013

4. Lived in Phoenix August-November of 2013

5. Home for December and January

6. Back at St. Joe's for 2 minor surgeries February of 2014 

7. Home for 2 weeks

8. Back at St. Joe's for rejection and complications March, April, May, and now June of 2014

And here were are. I feel like I'm in prison. If you've never spent more than a week in the hospital, you couldn't possibly know what I'm feeling. At least in prison, there's less physical pain. I can't sleep, the food is terrible, the tv is terrible, I only go outside for 30 minutes a day because I have to be back for more medicine, I have lost all independence, I have no privacy. I thought I when I decided to get a transplant that my life would be better. That maybe I'd have less stress. That maybe I'd be a little closer to normal. That maybe I'd experience less pain. But in truth my life hasn't really changed. The only difference is, I can breathe. Which, please don't get me wrong, I am forever thankful that I can now breathe. But what's the use if I have no chance to really get out and live? My life is nothing I would wish on anyone. Between all of my struggles with my health in this last year, I have competed in numerous pageants, held 2 jobs, continued to go to school, and maintained a healthy relationship. Call me crazy but thats all I want in life. A typical, normal life. I don't ask for anything out of reach, or special. Why does that have to be so hard for me? Why am I challenged every day? One day I will have my answers. Life will answer my question "Why me?".  I know it could always be worse, but right now I am just going to be angry and upset about things. And I think that's okay.

-A

Opening To "I Survived"

I have been working on a memoir I'm titling "I Survived" for quite some time and today I put together the first part of the opening to my book. There is much editing and adding to be put into this but for a first jot down, I really liked how it came out. I thought I would share it with everyone. Enjoy!

Foremost I want to thank you for picking this book to read amongst all the other you could have consumed your time with. This book won’t be at all what you are expecting. This is not only my story, but also the story of others in the same situation. I will introduce you to a disease known as Cystic Fibrosis. I will refer to it as CF typically. Don’t know what CF is? I’ve got that covered also. You will read about the scientific aspect first before my story starts. I want you, my dear reader, to understand the disease thoroughly so there is no confusion or question deep into these pages. Like with all things, this disease has its positives and negatives. That is where I come in. I carry a perspective that is not seen in most of humanity. Through out you will learn I have always lived my life one day at a time, very literally. I worry about today, never tomorrow. It is to my understanding that most people living with CF have the same mentality. To sum up the quantity of the duration, I have lived close to half of my life in the hospital. I know what it is like to feel trapped in ones own body and mind. I have faced deep depression. I grew up as a special needs child. I know the terror of going into crowds. I know the feeling of death. I have felt the gratification of a new life. I have learned through trial and error to take no one and nothing for granted.

My goal is not for my reader to feel sorrowful for me, but rather to be inspired by my story and maybe learn a thing or two about themselves. Through my story may my reader possibly see a new light in their lives or an answer they have been yearning for. Most of all, this book is meant to fulfill a life long dream of mine. I have always wanted to make a difference in someone’s life. I have always hoped to help better someone by using my disease; whether that is through creating a fundraiser, sharing my story, mentoring, being in a video, or writing a book.

You are about to dive into the story of my life with Cystic Fibrosis. Day by day was very routine for me, which would make for a dreadfully boring book. No. I will rely on the major events that impacted my life the most as I grew up. Within each story there is a defeat and a victory. I feel I must warn you; detailing the life of someone living with Cystic Fibrosis is reassuringly frustrating, devastating, overwhelming and down right disgusting in every way possible. However, this disease has its beauty hidden. I was taught patience, tenderness, and gratitude. I learned to cherish all 5 of the senses. I learned when to speak up and when to comply. I learned deep self-respect. My favorite thing I was given by CF was my appreciation for time.

I realized many dominating things in my life. Everyone’s heard the saying “If you can’t learn to love yourself, how can you love anyone else?” In my late teenage years I realized that saying in a much deeper ideal. If I couldn’t love myself, not only who I am as a person, but also myself with CF, how could I ever be happy with anything?

“Today I choose to live my life with gratitude for the love that fills my heart, the peace that rests inside my spirit, and the voice of hope that says…all things are possible!”- Anonymous

Insight to Pageantry

Ever since I started competing in pageants a couple years ago I realized how life altering the experience is every time. I am so proud of the woman I have become because of the Miss America Organization. I give all of my confidence, poise and gratitude that I have achieved to my pageant experiences. I would like to however clear some things up to the public about Miss America pageants and back stage. I am always asked about the other contestants and how I get along with them. If they are self-centered and catty. The answer to that is that I have more girlfriends now than I ever have before. For every 20 amazing, giving, talented, brilliant young women there is 1 sour apple. I never thought I would meet such incredible and truly happy young women in my life. I am grateful for each friendship I have created. Another misconception about pageant girls is that they are unintelligent. That is so far from the truth. I have met women well on their way to becoming doctors in all fields, scientists, lawyers, world leaders, and so much more. Miss America is the world's leading scholarship organization for young women...give us some credit! We are also not affiliated with Donald Trump, Miss USA or Miss Universe. USA and America are very different and we like to keep it that way. So a little about competition and back stage. Interview is probably the most terrifying and gratifying experience of all phases. A 10 minute heart attack. Personally, this is my favorite phase. I love on the spot questions. Swimsuit is next. We work hard for the bodies we have, so it is not difficult to get out there. Yes, we use what is called butt glue. It's glue to keep the contestants from getting wedgies. We also use this on our tops and occasionally on our gowns. Last minute toning goes into this phase: crunches, push ups, lifting, anything to pump up muscle. Talent counts as the most in competition. Each contestant takes this time to shine in their own way. This lasts for 90 seconds. Evening gown is always so calm to me. I feel like all of the contestants are relaxed at this point. Evening gown is supposed to be beautiful and graceful, poised and elegant. I take a lot of pride in my gowns. Final phase of competition is on-stage question. Each contestant is asked 2 questions. This can be so scary. Answering on the spot in front of a crowd that is sure to disagree and judge your answer. Then the beautiful crowning moment. The truth is that every contestant that is on that stage deserves that crown. But its not about the crown, its about the journey. Yes, we stress ourselves out to hair loss, we wear the world's most uncomfortable shoes, we wear earrings that are too heavy, we read up on current events until we get headaches, and we probably spend too much money. But in the end, we are so much more than that. We are dreamers, achievers, believers, supporters, advocates, volunteers, and world changers. We are the women of the Miss America Organization.

Believe

Recently I have been having a slight bump in the road with my health. I have been battling a new infection in my lungs this last month. It seems to have really taken a toll on me but is being treated effectively. I have done 4 testing procedures to check for rejection and all have come back at 0%!! I am still being treated for rejection in case we missed it or it comes at a surprise. This means lots of steroids...great. I have been deprived of sleep and the mood swings are setting in along with the hunger, and attitude! Oh and you can't forget the puffy cheeks I love so much. I am feeling better though and am fully expecting my new lungs to be at the level they were at 3 months ago. With hard work and dedication I know I'll get back to being strong. In the down time I have had, I have really advanced one of my books and I am completely estatic over it!!! Also other great news; tomorrow I will be celebrating my 8 month Breathe Day post transplant!!! Staying positive is key in hard times. If I could give any word of advice it would be, if you're going to believe in anything then believe in yourself. If you do that, there is nothing that can stop you in this world.

XO-A

Keep Your Eyes On The Horizon

One of the most important and valued hobbies in my life is that I write. I not only write on my blog every so often, I am currently writing 3 books. My books take me places I have always wanted to go. I can experience adventures in a way with out expense and risk. I can express an emotion with out having any repercussions. My books are my escape from reality. Ready to hear about them individually? Here we go!

My first book is by far my favorite and my first real true love in life. I have been writing this story since I was 12 and have yet to be complete it. This is a story inspired by Titanic, Romeo and Juliet, Tristan and Isolde, and the Notebook. So can you guess the genre (theme) of this book? Romance :) This story is full of tragic romance, family honor, history, chivalry and action. The title of this book is called The Island. Strangely this story has nothing to do with an island, at all. The story goes: in 7th grade I had an assignment to write a paper on a mystery. I wrote about five kids who were stranded on a mysterious island, I titled it The Island. I got an F on this paper and was told I could never be a writer. To prove a point I started writing a love story, which ended up being 12 pages long in size 16 font. Silly enough, I forgot how to change the name of a file on the computer so I erased my school paper and copy and pasted it under the file name The Island. Since that day, the name has stuck and I couldn't image it being titled anything else. This will be my first book to be published.

My second book is a memoir of my life before transplant and my recovery afterwards. I plan to use this book as a way to release my emotions on my journey. Most people don't realize that the emotional aspect of a life with a terminal illness is harder to manage than the deteriorating physical battle. I want to give people a direct connection with my story. After people read my book the last page will read alone "If I can do it...You can do it".

My third book is still in the process of unorganized sketches and notes. This will be a non-fiction scientific fantasy. I am creating a world called Kristanya that has templets sealed in diamond that explains the fundamentals of the new world. There will be 6 separate battles between good and evil. This will be a new and interesting topic I am working on. This will transform into something no one has ever written about. I am going to be a little secretive with this right now because I am still putting much of it together. My inspiration for this book is Lord of the Rings, Harry Potter, and the Chronicles of Narnia. I plan on this to not only become a story but a full series of more than 4 books.

I have been writing since I can remember. When I was a child I would staple printing paper together to make my own book and I would draw and illustrate short stories. If you are reading this, I promise you a signed copy of any book of your choice. My goal is to be a published author before I reach the age of 25, keep your eyes on the horizon.

XO- A

Miss Grand Canyon 2014

This past Saturday I competed for the title of Miss Grand Canyon 2014. This was the first ever Miss Grand Canyon! I had so much fun. This was probably one of the top pageants I had the most fun at. I want to congratulate my friend Hannah Morgan as the new and first Miss Grand Canyon 2014! She is so deserving and such a great person. Although I did not win the title, I did win the Quality of Life award again!! I am very proud of this. As of right now, there are no more open pageants left for the class of Miss Arizona 2014. I will be back next year!
XO- A

Retrospect

I have decided to compete for Miss Grand Canyon after a very encouraging conversation from a beautifully dedicated friend of mine. My admiration for her give me hope to carry that in myself one day. With that being said, I am faced again with the last open pageant of the season. I was sad I did not make it to Miss Arizona last year, but after everything I went through in 2013, I can now understand why things happened the way they did. I know everything has a reason. I also understand that I may never know that reason. But I accept it and move forward. I look forward to compete with 8 other women competing for the title of Miss Grand Canyon 2014. All 9 of us deserve the crown, but its not about who deserves it. Its about who's time is right. We will all have our time and until then we have to know we are just not ready. We have to know something else is coming in our lives and it was not meant to be to become a titleholder this year. I have made so many friends this year and I am grateful for each chance I take in life. Retrospect is an unusual thing in my life. I seem to find it when I feel most centered. As I grow further into an adult I am seeing it more often. Retrospect is making me humbled and grateful. I love it.
XO-A