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!

17 thoughts on “Rare

  1. A friend sent me to the Good Housekeeping article that you were featured in… she said “this sounds like you” and she is right…I have been put back on medds and I am about to have my feeding tube replaced (it was removed last year because I was “doing well”….won’t do that again) I am the mother of four 🙂 and live as active of a life as I can… I am joyful despite my illnesses. I appreciate your positive attitude and beautiful words of happiness. Than You for sharing. I am at the beginning of understanding all of this, the understanding of why my body is doing what it is has been a head scratcher at most of my appointments.And although it has been almost 8 years of trial and error , I am hoping that some of the information I read about can provide some better understanding… Thanks again for sharing.
    Stacy

    • Omg I am so glad to see this , I have been this way my whole life..I need insurance and can’t afford it..everyone please pray for me…I’m so sorry brynn it isn’t nice to be allergic to life at all..all this time I was wondering what was wrong with me thank you for speaking out

  2. Brynn, You are so awesome. Thank you for your uplifting words as I am having a really hard time doing my best to balance school and my health right now. I have Ehlers Danlos Syndrome Type 3, Gastroparesis, Dysautonomia, and am still being worked up for more testing. Your story is so relatable and your last few posts just remind me that everything will be, okay. I thank you for reminding me to make each day worth while and also for reminding me how important it is to talk about your illness. Thank you for spreading awareness! I wish you all the best.

  3. I just read your story on CNN and I had to find you online. ‘m 27 years older than you, but I promise you that your story and your words will change me for the rest of my life. I’m a mother of a little almost four-year-old girl and pregnant with baby boy on the way. I know as a mother that our children being sick is our greatest fear. Rarely, have I considered what it would feel like to watch my child suffer, because it’s too painful to think about. I’m in awe of you and your family’s strength and positivity. I read your story and I was sick with guilt over how much I take for granted. Your outlook and sense of humor is incredibly inspiring. I just read this blog post and I will carry these words with me in my wallet from now on:
    “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.”

    I can’t begin to tell you how much I wish you health and happiness. You are an incredible young woman and the world needs you in so many ways. Thank you for doing what you can to reach out through your blog and social networks to spread some of your insight and energy. I look forward to following your story. Again though, more than anything I want to thank you and wish you so much health and happiness.

      • Brynn,
        I too just came across your article on CNN and had to learn more about you and your story. I have a 5 year old daughter with severe anaphylaxis to multiple foods and environmental allergens and unfortunately experience how hard it can be to have to make drastic life changes and for her to be seen as “different” in the eyes of others in order to be safe and healthy.

        I am truly inspired by your story and I am overwhelmed with joy about your outlook on life and how strong you are. I have two young girls that I am trying to educate and influence as they grow up that we all have challenges, losses, self-confidence issues and traumatic or life changing situations that occur, but it is how we handle them that matters and more importantly that we try to make a difference for others through our obstacles. You have shown such grace and encouragement through your journey and I am grateful that it challenges me to want to do more!

        I pray for you and your family as you take one day at a time, that you all have peace and strength through this process, that you continue to lean on the encouragement that you are in this particular season of life for a reason and that others will be impacted by your amazing willingness to share your story along the way. Thank you for being an amazing inspiration and for being a strong, driven young women with a focus on making an impact….you have already made an impact on me!

      • Just saw the article on CNN and came looking for your blog. I have no idea what you have been through, even reading the article, and can’t imagine how difficult things must be for you and your family. I have a 1 year old little girl and I pray that she has just a fraction of your strength and positive attitude. You are an amazing young woman and I will pray for you each and every day. Stay strong, keep inspiring others, and maybe one day doctors will really figure out how to handle Mast Cell. God Bless you and your family.

  4. I too just read your article on CNN’s website which brought me to your blog. You are so much wiser than you years. You attitude is an inspiration to me. It makes me count my blessings and want me to share my thoughts with people on how they make me feel. I am a big believer of “what goes around comes around” also! I wish you the continued strength to get through whatever faces you. You seem like a such a strong young lady. Be proud of yourself, I can only imagine how proud your parents must be of you. If you were my daughter, I would be tickled pink at the young lady you are becoming!

  5. Hi, I just found your blog through a Facebook link to your Bubble Girl article. It was a great video and post about how you’re sharing your life experiences to make others’ aware. I also have Ehlers Danlos, POTS, and probably Mast Cell disease, because I’ve been having anyphalaxis for 30 years. My case isn’t as severe as yours, but I’m so proud of all the wonderful awareness you’ve brought and will pray that better treatments can come for you.

  6. I just got done reading your inspiring story on CNN. I am amazed at your spirit and attitude and hope that modern medicine finds a cure so that things may be a bit easier for you. It is your story that serves to inspire all of us and maybe for this time before you are better someday… your ability to share your positive outlook and kindness in the face of the hardship of your condition is a better calling than what most of us get wrapped up in in our everyday lives. You are making such a difference to so many people. You are such a special person, keep writing, keep playing that guitar and thank you for sharing your story 🙂

  7. Hi Brynn! I hope your having a great day today. I read your story on a local news station where I live in Florida. I am so happy to see how much of a fighter you are with this crazy illness. The story struck me because I have also been diagnosed with a chronic illness and so has my son. I’m sure your medical journey has been long and thorough but wanted to ask if you had looked into mold? I was shocked to find out that my entire family being exposed to a water damaged home could create such strange symptoms, loss of quality of life as well as allergies to food, bright lights, sun and severe chemical sensitivities and the list goes on it causes system wide chaos too many to list. We now have autoimmunity issues and our goal is to get our immune systems working again. There is a genetic component so our bodies are unable to process the toxins from mold and they continue to circulate causing great damage. And we don’t look sick! I went to 10 different doctors until I found one that works in environmental medicine who follows Dr. Shoemakers (mold doc) protocol. All of my main stream medical doctors were completely unaware of how deadly mold can be and had no idea how to test for it. Our world is evolving and main stream medical just hasn’t caught up with it yet. I am getting better but must live in a specific home environment and avoid many places due to mold. My son is on hospital-home bound because he was still reacting to the school environment. We also follow a specific diet. We both have a good sense of humor about it and also try to just roll with the punches. I just felt compelled to share that with you when I read everything that your going through. It unfortunately sounded familiar. Keep up the good fight and keep talking about it!

  8. Thank you for sharing your story with the world. You are a very brave and courageous young lady. I suffer from a lot of food, medicine, and environmental allergies that seem to change from day to day. However, it’s nothing compared to the ordeal and suffering that you have been experiencing. You are an inspiration for anyone who is dealing with any type of medical condition or obstacles in their lives. May you be blessed with good health – physically, mentally, emotionally, and spiritually.

  9. Hey, girl! Was brought over here by Yahoo. I just wanted to pop in and say hello. I haven’t got any allergies myself, but I do have a neurological disorder called Neurofibromatosis. I’m grateful every day that it’s mild, but it’s progressive and I worry about my future; I’m almost 30 and wonder what will happen. I know it’s nothing like you go through, but the internet has made me feel so much less alone.
    You are a wonderful young lady. Thank you for sharing your story. I try to be very aware of rare disorders, diseases and illnesses. So thanks for sharing; people need to know there’s so much rare stuff out there.

  10. Hi there, first off I wanted to say that your story really is inspiring, and has helped me put my own health condition in perspective. Though I don’t have what would be considered true allergies, I do deal with severe food intolerance that can make me very sick. In my case the worst offender is any type of sugar, be it natural or otherwise. Even small natural amounts found in vegetables can be an issue, and fruit is completely out. I can relate to being afraid each time you eat something.

    But anyway when I saw your story on the news I just had to share what has helped me to deal with my issues. When I was at my sickish I managed to come into contact with a alternative type homeopath that specializes in allergies and intolerance. I wasn’t sure at first, but having seen him now and experienced the improvement, I can honestly say that his methods are groundbreaking.

    His website is: http://www.energizeyourlife.org

    I just would have felt guilty if I didn’t share what has and is still helping me through this difficult time in my life. And thanks again for being an inspiration to everyone, but particularly those dealing with health conditions.

    With love and encouragement, Jeana (Isaiah 33:24)

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