Tag Archives: gastroparesis

“I’m Okay.”

Posted on by Standard 3

As I lay in my hospital room, I can’t help but to ask myself why bad things happen to good people. Have you ever thought about the ways our lives play out? Why do bad things happen to good people (and I am in no way referring to myself)? The most beautiful people that I’ve encountered in my life are the people who have endured the most heartbreak. The strongest people I know are the ones who go home at the end of the day feeling like they’re the weakest. Why is it that the most beautiful spirits are the ones that struggle so much? Is it because the rest of us are so oblivious to the world around us to realize how thankful we should be? I’ve learned that when I lose myself, I somehow manage to figure everything out when I am trapped between these hospital walls- the dreary, lonely, hospital walls. Maybe it’s the beeping and buzzing in the hallway that makes me realize I’m not alone. I know that the patient in the room next door is hearing the same beeping that I hear (if they’re conscious) and for some reason I am able to find peace in that- the realization that I am far from alone. Maybe it was my caring nurse who basically searched the hospital up and down to find the specific drink I requested because I’m allergic to just about everything else. Maybe I chalk it all up to my amazing mother who is attempting to sleep in an uncomfortable chair beside this hospital bed (for the 100th time). What if I’m only finding peace due to the realization that others around me are hurting more? Why is it that we as human beings allow ourselves to dismiss our own pain just because someone, somewhere, is hurting more? Why can’t we realize that it’s okay to accept the pain we’re enduring? Because a stranger on the other side of the Earth is worse off than me, I should just pretend that my pain is irrelevant? WHY must we all feel the need to explain ourselves for each and every thought that runs through our never-resting minds?

After a solid 48 hours of living hell, I am here to spread the message that I have relearned today: “It’s okay not to be okay.” Every time I land within these hospital walls, I turn to the only thing that I know will never leave me- music. As soon as I get the opportunity, I find my headphones and drown out the hospital buzz with the familiar lyrics that bring myself back to sanity with a message that puts everything back into perspective; It’s okay not to be okay.

Jessie J, thank you for using your voice to share the message that is responsible for guiding me through dark and difficult days. Without fail, your lyrics are the first ones that come to mind when I am trapped between these hospital walls. The funny thing is, your lyrics are so familiar to me that they still manage to come to me even when I’m completely out of my mind. Although I wasn’t aware of it at the time, I now know that it was your music that pulled me through the complications that arose from my previous surgeries. As I was waking up from anesthesia, my mother and nurse encouraged me to listen to music to distract me from the pain and discomfort I was feeling. Now that I have recovered from the trauma of that situation, it makes me smile to look back and see how much your lyrics helped me cope with the pain that I thought would never end. Most people embarrass themselves by talking nonsense as they come out of anesthesia- I sing. I typically cringe when a friend or family member tells me that they have a video of me that was taken while I was “loopy”, but when I heard myself sing the first line of lyrics, it was different. You see, normally I make a major effort to “be strong” for myself and those around me. I’m a “fake it ’til I make it” kind of girl. When I saw the video of myself groggily singing along to your lyrics, I was overcome by a feeling that I haven’t fully allowed myself to express up until now- vulnerability. Sometimes I believe that the only time I’m truly being myself is when I’m singing; I found this to be all too true when I saw videos of myself singing “Big White Room” and “Who You Are” as I was recovering from surgery. Thanks to the anesthesia, the true emotions that I’ve always tried to hide, came through. I remember being in an indescribable amount of pain and saying, “You have no idea how hard I’m fighting to keep it together. I don’t want to start crying.” The anesthesia must have been wearing off at this point, because I clearly remember my nurse immediately responding by telling me that I don’t have to be a hero all the time. Until that moment, I couldn’t believe how much time I’d spent trying to be something that I wasn’t- “Okay”. The truth is, by sharing this message along with the video, I feel more “real” than I have in a very long time. This is me, the real Brynn- I’m vulnerable. I’m scared that I’ll never accomplish everything that I’d dreamt of because of this cruel illness. I’m heartbroken for the opportunities that I’ve missed out on and experiences that I won’t get the chance to live out- But I am so much more than a sad story. I’m the success story. In spite of all the negatives I’ve faced and all the lows I’ve hit, I’m Okay.

If you ever need to have things put into perspective, all you have to do is spend a few moments within these hospital walls. You’ll realize that for every tear shed of sadness, there are even more cries of relief. For every life that is lost, another is saved. Hospitals are places of celebration- that’s something that you will never understand until you see it for yourself. These hospital walls contain more hope than despair.  This is the hospital that made me understand that not everyone gets second chances, but those who do are less likely to take them for granted.

To each person who lays an eye on my story, please believe me when I say that if you’re struggling, it’s okay to talk about it. If you aren’t okay in the moment, I can guarantee that you will be one step closer to “okay” by the time you acknowledge it.

-Brynn

 

 

 

Circumstances

Posted on by Standard 3

“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

Posted on by Standard 4

“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.

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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