Macy

03 Mar Macy

Have you ever plugged your nose and tried to breathe through a coffee straw? I know this sounds crazy and you’re probably wondering why I have decided to start an introduction this way. But really, if you have a coffee straw try it. The first few seconds may be easy, but keep going. Have you reached a minute yet? If you have, I’m super proud of you because most people give up within the first 45 seconds. Can you imagine doing your everyday tasks while struggling to breathe like this? Going to the grocery, taking a shower, cooking dinner? How about going on a run, lifting weights, working out? I am sure some of these things seem nearly impossible, but that is what is feels like to breathe when you have Cystic Fibrosis. So let’s back up a bit and I will explain.

When I was a baby I absolutely loved to eat, in fact if I wasn’t eating I was probably crying because I was hungry, but no matter how much I ate I would never gain any weight. This became a concern to not only my mother but also to my doctors. They began to run tests and ended up diagnosing me with Cystic Fibrosis (CF) at six weeks old. My family had never heard of this disease and had absolutely no idea how it would change not only my life but all of our lives forever. Cystic Fibrosis is an inherited chronic lung disease that also causes problems with the digestive system. A defective gene and its protein product create an unusually thick sticky mucus that clogs the lungs and makes it much harder to breathe. It also causes the enzymes in our bodies to not work properly, making it very hard to break down fat and digest food and extremely hard to gain weight.

Let’s take a quick left turn and I can explain to you how this disease affects my everyday life. On a typical day, I wake up and the first thing I do is a breathing treatment. This consists of a vest machine that inflates with air and begins to “shake” to help break up the thick sticky mucus in my lungs. Along with the vest, I do four aerosol treatments to help thin the mucus and make it easier to cough it out. Yes, you read that right, the only way to get this mucus out of my lungs is to cough it up. I then get my oral medications and antibiotics. There are too many to count, but thank goodness for an app on my phone to help me remember them all. On average this takes two hours every morning. Before I eat I have to take enzymes since the ones in my body don’t work properly. I also have to check my blood sugar and count my carbohydrates so I can give myself a shot of insulin after I eat. I do this for every meal and snack. At the end of the day, I return to my couch with a fuzzy blanket, my puppy and my pajamas to do one final treatment and prepare for the night. Before I head to bed I give myself two shots of insulin to cover my nightly tube feeds. While I am sleeping at night I am hooked up to my feeding tube, through the night I get an extra 1,125 calories. Although I am getting these calories while I am asleep, I am encouraged to still eat three high-calorie meals a day. My body burns six times more calories than an average female my age because it is working so hard to breathe. Not only is it harder to breathe, it is much harder to maintain a healthy weight. Every two to three months I get admitted into the hospital for a two-week hospital stay. During this time I am given IV antibiotics to help fight any infection I might have, I also do breathing treatments every four hours. Physical therapy comes daily to help get me active and moving. I love to workout every morning when I am home. It is 45 minutes of my day that I am not worried about medications or antibiotics.

Often times I am asked how do you do it ? How do you keep pushing ? How do you stay positive ? This is where I am going to tell you all something I don’t often admit. Something that I don’t like to think about, but also something that will help you to understand the severity of this disease. Something that may encourage you to reach out to someone, to be there to support someone who needs it. Something that is going to be hard for my family to read, but something that I think is super important. We are going to get real and raw here for a little bit.

I was in eighth grade, a couple months before the big Washington DC trip, you know the one trip everyone is so excited to go on. As I mentioned before, I have to do A LOT in my day to keep healthy. My mom was starting to talk to the school about what I would have to bring and everything I would have to do. We even set up a meeting so that the teacher that was taking care of me would know exactly what I needed. This was the first time I would be leaving my mom for more than a night, but it was also the first time I began to feel like, “ Why Me, why can’t I just be like everyone else?”. And that was when I decided I was done. No guys, I am being serious. I stopped doing everything, I would flush all of my medications down the toilet, I would lie to my parents about doing my treatments. I simply wanted to live a “normal” life. I didn’t want my world to revolve around Cystic Fibrosis. I just wanted to live. I wanted to go with my friends without worrying about medications. So I did just that. Only to my surprise this only lasted a month. ONE MONTH. 30 days. I began to get sick quickly, so my mom took me to the doctor and I got admitted for what I thought was a two week hospital stay, to my surprise the doctor began to run many tests. After a day of being admitted he came in and sat down next to me. I can remember this like it happened yesterday. He looked at me and said, “Macy what have you been doing?”. I didn’t respond. He then said, “Or should I say what haven’t you been doing?”. I still didn’t respond. He then told me, “If you don’t change what you are doing, you will not live to be 16 years old”. I didn’t know what to say, I was 15 at the time. What 15 year old would be prepared to hear they weren’t going to live for another year if they didn’t change the way they were taking care of themselves? It was at that moment that I knew something had to change. No matter how bad I wanted to live a “normal” life, I would never be able to. I had to accept this is my normal–breathing treatments, hospital admissions, insulin shots, and being aware of my environment and all the germs surrounding me .

I am not going to lie, this is something I still struggle with. It is very hard to watch my friends go out together, to go have a drink and to go out to a bar and know that I can’t do the same. Actually, my senior year of high school I was just going through the motions, I was doing my treatments, taking my medications but just trying not to think about having CF, trying to go out with my friends, trying to do everything they could do. At that point it got so bad that my pulmonary function was only 14%. A few weeks before graduation I could hardly walk up the stairs, my mom had to wash my hair and help me take a shower. I really wanted to walk at graduation and dance in my final dance recital. I was admitted four days before recital and was determined to be out in time to dance one last time with my best friends. During this admission, I was asked one of the hardest questions of my entire life. A question that I still think about everyday. “Would you rather live a longer life, taking care of yourself and sitting some things out, or would you rather live your life to the fullest knowing you probably won’t live as long?”. Honestly, what 19 or 20 year old would have an answer to that question? Me. I do. Although it took me nearly two years to have an answer, I finally do. Here’s my answer for you all. God gave me this disease, this life, because he knew I was strong enough to live it. It took me 20 years to figure out a plan, a way to cope with this disease and to still live a meaningful life I love.

Sure, things are still thrown my way that I do not plan for, but that happens to everyone. I have a life I absolutely love. A life and support system I will forever be thankful for. It has taken everything in me to be able to open up and pour my heart out to you, but I hope this helps those who may be struggling with their own personal challenges. I hope it helps bring awareness to this terrifying disease. I have never wanted to be looked at as the “sick” girl, but that is exactly what I am and I am finally okay with that. I promise to always give my all, and to push harder on the days I want to give up. And on those days I think I can’t keep going, I promise to ask for help. Because asking for help does not make you weak, it only makes you stronger. I never want you to feel sorry for me because I am proud of the life I am living. I am chasing my dreams one breath at a time and have started a small business in the upstairs of our cute little house with my dog as my assistant. We make dog bandanas, treats, collars and leashes. I am learning how to balance my health and my life. If I can do it so can you ! Follow your dreams and also give Mia + Macy’s a follow too ! Thank you for reaching out to me to share my story and to bring awareness to Cystic Fibrosis. Sometimes we just need to open up and be vulnerable. Sometimes, we just need to do what is best for ourselves and sometimes we just need to learn it is okay to sit a few things out and to not be “normal”.

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