Fight or Flight?

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I always try my best to describe my life in a way that can be understood by others without sounding so depressing, but the events that have taken place over the past month cannot be sugarcoated. My battle against mast cell disease has been terrifying.

I am currently on week three of this hospital admission- with the majority of this time being spent in the ICU. At this point, all the days start to run together.

I’ve been waiting about posting an update until I had something good to say, but the truth is that this disease is completely kicking my butt right now. While I have had improvements in some areas, I am still having seizures and we cannot seem to get my anaphylaxis and other episodes under control. As of today, I have officially been on chemo for one week. 2014 has proven to be a terrifying year for my family. There is a war going on inside my body and that will never stop being scary, but I can promise you that I’m not going down without a fight. I also wanted to take this opportunity to thank all of you for the endless amount of support that you have given me throughout this battle. It makes me so happy to know that the day I kick Mast Cell Disease in the @$$, I will have all of you cheering me on just as you have from the beginning. I couldn’t fight this battle without you and I love you all more than words can say.

Living with Mast Cell Disease- Heroes

“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” – Christopher Reeve

            Everywhere we go, we are surrounded by heroes. A hero can be anyone. Being a hero means that you’ve been able to make a difference in someone else’s life. Whether you’ve pulled someone from a burning building or were the only reason that a person smiled today, you’re a hero. Then you have the superheroes, the people that make an unbelievable difference in society. Christopher Reeve, the original Superman, will always be a legend. Most people know him for his cape and tights, but in my eyes he’s a superhero because of a completely different battle – the one that was going on inside his body. Christopher Reeve fought Mastocytosis, a devastating, incurable, and life-threatening disease. The fact that Reeve was able to be Superman while he had a war going on inside his own body definitely qualifies him as a superhero. Only the toughest can battle mast cell disease; I know this because I am fighting it too.

Mast cell disease has definitely made a huge impact on my life. It has taken a lot away from me, but at the same time, I’ve gained from it. Once the disease took over, I developed a whole new perspective on life. It brought me back to reality. You never truly understand the complexity of life until something happens and reality slaps you in the face. It’s probably safe to say that the majority of our society is completely oblivious to everything going on in our world. We as a society take so much for granted and rarely spend time thinking about how our lives could be drastically changed within a split second. You or a loved one could be involved in a serious accident, have your lives forever changed by a natural disaster, or like me, be given a life-altering diagnosis. After I was diagnosed, I felt like everything that I had previously worked so hard to achieve was thrown away. I was a 3rd degree black belt in TaeKwonDo and very close to becoming an instructor at the TaeKwonDo academy. I had good grades in school with plans to go to a university and later pursue a career in the medical field. I never thought that I would later be on so many medications that I couldn’t think for myself or that I would have to rely on family members to carry me around the house because I couldn’t stand on my own. Life as I knew it was over, but I didn’t know at the time that maybe this would be a good thing.

“The reason people find it so hard to be happy is that they always see the past better than it was, the present worse than it is, and the future less resolved than it will be.” – Marcel Pagnol

            It seemed like my life was over. I couldn’t understand why this had to happen to ME. Why did I have to be diagnosed with some bizarre and unheard of disease? Couldn’t I have been diagnosed with a disease that society was familiar with and knew about instead of this one? After going months with these thoughts running through my head, I finally realized that maybe all of this really did happen to me for a reason. As Oprah Winfrey would say, I had my “Aha!” moment.

Sometimes it’s hard for me to understand why I have to battle mast cell disease and the other chronic illnesses that come along with it. Why can’t I be normal? I’ve asked myself this question a thousand times, and I’ve finally realized that there isn’t really anything special about normalcy. Every hero has something special about them that nobody else possesses; no hero is normal. Maybe, just maybe, I am supposed to be another hero.