Rare

“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!

Circumstances

“People are always blaming their circumstances for what they are. I don’t believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and if they can’t find them, make them.” -G.B. Shaw

“If you want something bad enough, you can make it happen.” We’ve all heard it. Some of us have grown up around the statement, while others have had it thrown at them to dismiss a complaint over various struggles and frustrations in life. It’s such a simple sentence, yet one that can have a powerful effect on the people who hear it. I spent countless hours tossing this statement around in my head before I finally came to the conclusion that everyone views it differently. Is it just meant to be a kind word of encouragement or a witty remark to silence another individual’s self-pity? Many people view it as a positive way to uplift someone in a difficult situation while others strictly believe that it’s just a harsh dismissal. It all depends on how you decide to process it- You can choose to use it in a positive way or you can put a negative spin on it if you so desire. Life’s circumstances are just the same; you can find ways to better yourself in difficult positions or you can choose to dwell on them.

For as long as I can remember, my parents have encouraged my siblings and I to follow our dreams and do whatever we desired with our lives. It has never mattered to them whether we grew up to become successful entrepreneurs or if one of us were to decide that we wanted to pursue a music career- as long as we’re happy with ourselves, they will be happy too. I always thought that I would be doing huge things with my life by now. I had all kinds of outrageous plans for my future-self. When asked what I wanted to be when I grew up, my five year old self would have simply responded with “Famous”! As I got older, my answers became more specific. At nine or ten years old, I had convinced myself (and everyone around me) that I would grow up to work with NASA. By the time I was in high school, I knew that I wanted to become a doctor. As my circumstances changed, my plans for the life ahead of me did the same.

I never in a million years would have guessed that I would be here- advocating for my rare disease. Our circumstances are always changing, in both ways good and bad. No matter how much we plan ahead and prepare, we come face to face with struggles that we never could have seen coming. Every day, I set new goals for myself. I know that people probably see my goals as completely outrageous, but I’m okay with that. When I do prove my potential, it will be the sweetest victory.

I challenge all of you to set a goal that nobody would expect you to accomplish. Overcome your circumstances. Think of something that scares you to death. Maybe you’ve always wanted to be an airplane pilot, or want to go out of your comfort zone and share your life story in hopes of encouraging others? Be spontaneous. When you finally fly solo, you may find it to be the best thing that has ever happened to you.

 

The Comeback Girl- 21 Years in the Making

“The two most important days in your life are the day you are born and the day you find out why.” -Mark Twain

2014 has taught me more about myself than I ever would have thought possible. This year I learned how to fight harder than I ever have before. Because of my acquired fighting skills, I reached my twenty-first birthday. After the year I’ve had, it felt like my 21st birthday would never get here! This year has not been easy. In just 365 days I have endured multiple surgeries, spent months in the ICU, learned how to walk with leg braces, I’ve been through four different central lines, I became one of the first patients in the country to be placed on a constant IV Benadryl pump, went through four different types of feeding tubes, added another diagnosis to the list and became the comeback girl.

I’ve always been vocal about the fact that I believe I was chosen to fight these monster illnesses for a reason. In this day and age, there are hundreds of crippling illnesses that need better treatments and the only way to spread awareness is to talk about them. Embarrassing or not, who is going to raise awareness for my disease if I don’t do it myself? The best decision I made in 2014 was starting Brynn’s Bubble. I had no idea how much I would gain from opening up about my invisible illnesses. After my story was shared on the Huffington Post, I began receiving emails from complete strangers who told me that by speaking out about Mast Cell Disease I saved their lives. I was contacted by mothers who told me that if they had not stumbled upon my story, their children likely would have gone untreated for another ten years just as I did. Other individuals thanked me for helping them find the cause behind deadly allergic reactions. Knowing that my voice has helped others is the most rewarding feeling in the world and it makes all of my struggles over the years worth it. I have no idea how to even begin to thank all of you for the overwhelming amount of support that you’ve given me.

Sometimes we are handed situations that seem impossible to overcome. Life is unpredictable and we never know what will happen from one day to another, but I can promise you that it gets better one way or another. I never imagined that I would be able to make a comeback. At the beginning of 2014 I couldn’t even stand without assistance from a walker or leg braces- Today I can walk up the stairs without thinking twice about it. I’ve attended various concerts over the past few months and was able to dance the night away at each one. (Of course I had to pay for it the next day, but IT WAS WORTH IT!) Thanks to IVIG treatments, I am now able to eat foods that once caused Anaphylaxis. I’m not anywhere close to being cured, but I am so much better than I have been in the past. To anyone out there who may be struggling- Never lose hope. Don’t give up on yourself. Allow yourself to keep striving for the things you wish to accomplish and don’t lose sight of them. Life may be confusing now, but one day it will all make sense.

I’m going to make 2015 my year. I will attempt things that I’ve always wanted to try. I refuse to let these illnesses control me any more than they already have. I will keep working hard so that I can finally get my high school diploma. I will face my biggest fears. Maybe this will be the year that I finally get to meet Ellen DeGeneres and see a taping of her show. Maybe this will be the year of medical breakthroughs. I don’t know what my 21st year of life has in store for me, but I am determined to fight harder than ever to make sure that it is the best year yet. Mast Cell Disease, Dysautonomia/POTS, Ehlers-Danlos Syndrome, & Gastroparesis- watch out because Brynn Duncan is making a comeback.

Rolling with the Punches

“It ain’t about how hard you hit: it’s about how hard you can get hit. And keep moving forward. It’s how much you can take. And keep moving forward. That’s how winning is done.” -Rocky Balboa

Life is about learning to roll with the punches. When I was nine years old, my sister and I enrolled at a TaeKwonDo Academy. At the beginning of each class, we would bow in and recite the tenets of TaeKwonDo; Honor, courtesy, integrity, perseverance, self-control, courage, community, strength, humility, and knowledge. In my first week of training we learned about perseverance and talked about setting goals. Most importantly, we learned that perseverance would be the key to achieving any goal that we wished to accomplish. Many of the white belts in my class set a goal to break their first board or just wished to pass the first testing to get their yellow belts. The very first goal that I made in TaeKwonDo was to one day become a 3rd degree black belt- the same rank as my instructor.

At age eleven, I became the first black belt in the Duncan family. I will never forget seeing my belt for the first time. There is no better feeling than running your fingers over the belt with your name embroidered in gold thread; vindication that I could be a successful female martial artist after so many kids told me that I wasn’t good enough.

About seven years into my training, I became seriously ill. As time passed, my health continued to spiral out of control. It was very difficult for me to attend school, much less TaeKwonDo. I was ranked as a 2nd degree black belt and couldn’t bear to think about losing reach of a goal that I set when I was nine years old, so I fought. Eight years into my training, at the age of seventeen, I passed the rigorous testing and earned the rank of 3rd degree black belt. I reached the goal that changed my life forever.

The lessons that I learned in my eight years of martial arts training made a bigger impact on my life than any of the lessons that I was taught at public school. Had I not been involved in TaeKwonDo, I honestly don’t know how I would have made it this far in life while being haunted by a chronic illness. TaeKwonDo taught me so much more than how to fight off an attacker; it taught me how to live. I earned my black belt by living by the tenets of TaeKwonDo. In all reality, being a black belt is nothing more than a state of mind.

For ten years now, I have had a poem by Master Karen Eden plastered on my wall as a constant reminder to myself that I am not (nor will I ever be) the average woman. I am a martial artist.

“I Am a Martial Artist”

I am a martial artist.

I see through different eyes.

I see a bigger picture

when others see grey skies.

Though many can’t conceive it,

I stand… facing the wind.

My bravery, not from fighting,

but from my strength within.

I am a martial artist.

I’ll walk the extra mile.

Not because I have to,

but because it is worth my while.

I know that I am different,

when I stand on a crowded street.

I know the fullness of winning,

I’ve tasted the cup of defeat.

I am a martial artist.

They say I walk with ease.

Though trained for bodily harm,

my intentions are for peace.

The world may come and go,

but a different path I’ll choose.

A path I will not stray from,

no matter win or lose.

-Karen Eden

Master Eden’s words still describe my life now just as much as they did before I had to stop actively training in TaeKwonDo. I strongly believe that this is because my martial arts training shaped me into the person I am today. I will be forever grateful to each and every instructor who has taught me along the way. Because of you, I have learned how to roll with the punches that life throws at me.

Thankful Thursday- Happy Thanksgiving!

Today I am thankful for all the things that I normally hate. I am thankful for my feeding tube, my central line (port), my wheelchair, and even my disease. I am thankful for modern medicine just because I simply wouldn’t be alive without it. Don’t get me wrong, I hate the fact that I have to rely on a feeding tube and wheelchair. As much as I hate all the medical equipment I require just to function, I am thankful to have it. Life without wheelchairs & feeding tubes could be impossible to those who rely on them. My quality of life has drastically improved since getting my own custom wheelchair & undergoing the surgeries to have the feeding tube and port placed. I had no idea that becoming a Tubie would soon lead me to meeting other teens and young adults who would become some of my best friends. It is crazy to realize that had I been born free of illnesses I never would have met my best friends. I can’t imagine doing life without them! The friends that I have made make it worth having to fight this monster disease- With you guys by my side, I know that we will never have to fight alone. I am thankful for my disease because it has led me to incredible life experiences that never would have happened to me if I had been born healthy. My disease has helped me find my voice and because of that, I have been able to help other people who are living with similar illnesses. I have huge plans for my future. There will always be difficult times but at the end of the day, I know that I am exactly where I’m supposed to be.

Above all, I am thankful for the doctors, nurses, and CNA’s who will continue to work saving lives every day over this holiday season. Their jobs do not get to skip a day just because it’s a holiday- there are always people who need help. Don’t forget to thank each and every person in the medical field who will be working over the holidays this season!

Thank you to everyone who has supported me from day one. I love you all! Happy Holidays!

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Surviving Summer

“I am a survivor- a living example of what a person can go through and survive.”- Elizabeth Taylor”

As summer of 2014 comes to a close, I can’t say that I will miss it. This summer has by far been one of the most challenging times of my life, but I survived. I have no idea how I would have made it this far without my amazing family and friends. The last time I updated, I was in the hospital. I ended up spending eight weeks inpatient and seven of those weeks were spent in the ICU. I felt like the hospital stay from hell would never end, but I SURVIVED. I will never forget the day that I was discharged from that crazy hospital admission; when suddenly my outlook on life changed completely. I remember complaining about the Carolina heat as I climbed from my wheelchair to the inside of our car. Within seconds of complaining about the sun, I wished that I could have taken that comment back. I was lucky to feel the sun on my skin. I realized that other patients who had been on the same floor of the hospital may not ever have the opportunity to feel the sun again, and in that moment I decided to enjoy everything for them. I hoped that if the roles had been switched, one of the other patients would have made the decision to enjoy every moment of their lives (even the bad ones) for me.

My life is much like a war zone. One day I am confidently cruising down a road that leads to freedom, and the next I realize that I’ve just detonated a bomb that was hidden in my path. As the area surrounding me goes up in flames, nearby witnesses stumble around helplessly because they have no idea how to save me. I start to panic when my brain processes that this could be the last mission of my life. At the very last moment, a brave soul decides to take a risk and manages to pull me out of the debris. I make it out alive and escape the scene with my body intact. If it weren’t for a few scars, you would have no idea that I had just survived a major catastrophe.

Just as I started to think that I couldn’t keep fighting any longer, an amazing doctor went completely out of his way to help me. I’m so thankful for the doctors, nurses, family, and friends that kept me going this summer. It has been a rough road, but I’ve learned so much along the way. Looking back on everything that has happened, I can’t help but to be anything other than happy. I have amazing family and friends who never fail to make me smile. I’m making exciting plans for the future and know that I have a bright life ahead of me. I’m just happy to be here.

– Survivor of Summer 2014

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.