Tag Archives: rare disease

Rare

Posted on by Standard 17

“There is nothing more rare, nor more beautiful, than a woman being unapologetically herself; comfortable in her perfect imperfection. To me, that is the true essence of beauty.” -Dr. Steve Maraboli

What goes around comes around. I truly believe that if you put good out into the world, it will come back to you in one way or another. It can be so difficult to go day by day and feel like nothing good ever comes to you. Nothing ever happens as quickly as we would like, but I do believe that our individual challenges have ways of working themselves out. Whether you are religious or not, no matter what you believe in, I believe that in the end everything will fall into place as it should- that is, if we have the patience to wait long enough. I’ve always somehow ended up in the right place at the right time, and time and time again I realize that everything happens for a reason.

The whole time that I’ve been sick, I have thought to myself, “What would I say if I had five minutes left to live and knew that every person I’ve crossed paths with could hear my thoughts?” The thinking in the shower, the thoughts that go through my head as I strum my guitar- My realizations that despite everything, I have ended up exactly where I am supposed to be.

You don’t want to live life constantly searching for the “better tomorrow’s”. If you live each day only thinking about what you would do if the day had been better to you, before you know it, you will discover that life has passed you by. If you make it a point to find just one good thing that happened, maybe you will discover that there really is light at the end of your dark tunnel.

One of the parts that I appreciate the most about living with a chronic illness and having so many close friends with chronic illnesses- I don’t leave words left unsaid. I tell my friends that I love them every chance I get because in the back of my mind I always ask myself if I would be happy with my words if they were to be the last words to a dear friend.

I am not walking the path that I would have chosen for myself. I am a rare breed of human who can’t be found just anywhere. I smile in the face of a challenge and don’t fear diversity the way that most women my age do. My body is flawed in more ways than can be counted, but I no longer try and hide behind my differences. At the end of the day, all anyone wants is to find happiness in all the dark shadows of the world. If my little voice can play a part in paving the way for all of my fellow rare warriors, I know that each of my days are playing out exactly as they should. I will never fit in with the cookie cutter persona that our society expects women to uphold, but for the first time in my life, I am perfectly okay with that.IMG_1914

Happy Rare Disease Day!

Fight or Flight?

Posted on by Standard 11

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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.

I AM NOT INVISIBLE

Posted on by Standard 3

I can easily say that last night was the most fun that I have had in years. I owe it all to the amazing Hunter Hayes. Last night, my friend Michaela and I attended a show from Hunter’s “We’re Not Invisible Tour”.  I have always had a lot of respect for Hunter as an artist, but after last night, words can’t even begin to express how much I admire him. With Michaela by my side, the night was perfect.

When I first heard his song, “Invisible”, I loved it.  I related to it so much, that I felt like it could have been written specifically for me. I’ve always been different. It was extremely difficult for me to relate to most people at school. I was very sick for all of my teenage years, and it forced me to grow up faster than everyone else. For the first five or six years, I was able to somewhat cover up my illness. Everything changed in 2012. After seven or eight years of searching for answers, I was diagnosed with a form of mast cell disease called “Mast Cell Activation Syndrome” as well as a form of autonomic dysfunction known as “POTS”. I had 30 hospital admissions that year. I never imagined that I would have to fight so hard for my life.

Earlier this year, I was laying in the ICU listening to “Invisible” on repeat. I remember looking at myself in the mirror and shaking my head as I realized that tubes and machines were keeping me alive. For months, I would just stare at my legs and plead for them to let me walk again. All I wanted was to be normal. I was tired of everyone staring at me. People were so busy staring at feeding tubes on my face, lines, and my “Bionic Legs” (leg braces) that I felt like they couldn’t see me. Hunter’s song helped me through all of those difficult times.

Michaela and I were able to meet Hunter before his show last night, and I have to say that he is one of the most genuine people that I have ever had the privilege of meeting. We got to tell him how much we loved his music and were able to tell him our story. We told him about the “Teens with Feeding Tubes 2014” video that Michaela made- Together we decided that “Invisible” would be the perfect music for the video. He loved it when we told him that the video was put to his song and we could tell that it truly meant a lot to him. He’s such a nice fella!

Being the advocates that we are, we were THRILLED to be filmed before the show. We were asked, “What does ‘Invisible’ mean to you?” After expressing our love for the song, we of course took the opportunity to raise awareness for ourselves. Michaela told them about our “invisible illnesses” and we followed that with showing them all of the pumps and lines we’re attached to that keep us alive. We love to spread awareness every chance we get!

I will never forget the feeling that overcame me when Hunter performed “Invisible” last night. Michaela looked over to me as we were belting out the lyrics and I became overwhelmed with happiness. I looked down and realized that I was standing without help and at the same time, I was wearing my 30lbs backpack that contained the three different pumps that have slowly given me my freedom back. The best feeling though, was looking to my side and seeing Michaela. We’ve been through so much in the short years that we have known each other. I have no idea where I would be without her. (I would not have lasted 24 hours with my first feeding tube if she had not been there telling me that it would get better. I almost pulled the NG tube out of my nose two hours after it was placed, but Michaela and my other “tubie” friends were there to talk me through the difficult days.) At the concert last night, we weren’t “the sick girls”- We were just Brynn and Michaela.  We are not invisible.

Thank you again to Hunter Hayes for giving us such an amazing night. I hope that I get to come to another show soon, and that one day Hunter will see this and know how much fun we had at the concert! To any of you who are going through difficult times:

“Hear me out, there’s so much more to life than what you’re feeling now. Someday you’ll look back on all these days and all this pain is gonna be invisible.”

-Brynn

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Living with Mast Cell Disease- Heroes

Posted on by Standard 3

“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.