Month: March 2015

Dear POTS, dear Big Beast.

Today my friend Micheala was published. She wrote an article on a forum about a letter to her illness (Gastroparesis) in which she adressed what she had to say to it. I’m so proud of her as we all fight so strongly to make our voices heard and she’s always done an amazing job at it. You can read her article here:

Recently a lot of things have happened in the medical world around POTS and it seems that we are beginning to enter a period where it will no longer be a mystery but rather something all physicians are aware of, however that is hopeful dreaming today and we still have a long way to go to make that happen. I started thinking about what I personally would say if I could write to my illness and it would go something like this:

Dear POTS,

It’s nice to finally see you. After so many years now of you being invisible well it’s nice to meet you. It’s nice to meet you because for so long I have always had the thought in the back of my head that maybe this was all just made up. It’s nice to meet you because doctors told me I was crazy since you never showed yourself. You don’t pop up as tangible evidence and because of that you have caused me so much pain. You have made me doubt myself so many times throughout life because I can’t see you and I worry that all the other things I can’t see well maybe they’re not there just like you. So it’s nice to finally see you because now I know I’m not crazy, that all the times I have scraped my knees falling, all the times I couldn’t catch my breath, when I couldn’t get out of bed they were all real, they weren’t in my head and I wasn’t doing it to myself.

It’s nice to know you’re real but sometimes I still wish you weren’t because maybe then I could find a way to get over you and move on with my life but I can’t. I can’t because there’s no way for me to completely throw you away you’re stuck to me like handcuffs and you weigh me down and you hold me back. You are a burden POTS and you will always be one.

You cause me to stay up at night tossing and turning because I will never be able to predict wether tomorrow will be a good day or a bad day. You are unpredictable and I hate that about you. You throw curveballs at me when I least expect them and you take from me without giving back. You steal things when I need them the most. You take friendships and you take opportunities, and this week you’ve reached a point I never thought I would see. This week you took the life of someone that fought you until you took too much and she took her life because of you and that makes me mad.

The worst part about you though the worst part is that even after all of this I am still thankful for you. That even after all the nights I’ve spent in the hospital, all the medications I’ve swallowed, all the doctors I’ve been to, and all the opportunities I have missed out on I’m still thankful for you and that makes it so hard. I’m thankful for you because you’ve given me a perception on life I never would have had. You’ve taught me to live life outside of the normal and to learn to be different. You’ve taught me to love myself even when all I could feel was broken. You’ve shown me real friendship and you’ve taught me what it’s like to be left to fight the battle alone. You’ve given me a life that isn’t covered in sparkly happiness and you’ve taught me how to be blessed when I’ve felt I had nothing. You’ve made me grow up and mature so much faster than all of those around me. You’ve taught me the beauty in the simple things and so much more. Because of all of this on even the darkest days like today when I want to hate you more than anything I still can’t because you’ve given me things some people will live their whole lives without seeing.

It’s nice to finally see you but I am not your friend. You are a beast and you continue to take but you will not win.

You do not get to be the victorious one in this battle, it’s my turn to win.

Your not friend,


My story is the story of a carrier. 

I’ve been asked to share my story at Jagathon this Friday. Jagathon is a Dance Marathon hosted by IUPUI to raise money for Riley Hospital for children. So of course I’ve spent the last month wondering what I will say to all these hundreds of college students in five minutes that would really get the point across that I’m trying to make. I’m not exactly sure yet but I’m sure it will come to me in the next 5 days. You see my story is very different from most of the other kids that will stand on that stage with me. A majority of these fighters whom I will stand alongside of have been patients since they can remember, some of them even taking their first steps up and down the hospital hallways. My story though it’s a whole lot different. My story is a story of advocacy. My story is the story that carries the story of all of these fighters and so many others. My journey is two and a half years old now and in these two and a half years I have met the absolute most incredible miracles that well I can  stand in front of you and say you should be jealous of me. You should be jealous of me because I have been touched and embraced in ways I never possibly imagined. I spent my weekend at home alone and I threw a pity party for myself because nobody came to wish me well before I set off on a week of tests and appointments. Today I set foot in my Riley to add yet another chapter to my story and I will walk out of my story today with one more story to carry with me. When I’m here I’m so much more than a high school girl. When I am here I am a carrier of stories. I stop along my way and find myself in the pathway of someone new that will leave their story in my arms so I can continue through the hallways to tell it. You see my story is special because I’m an advocater. Quite honestly I’m not even sure if that’s a word but if it is that’s who I am. I am able to walk and talk with my illnesses I am able to stand up straight and I’m able to be the voice of so many fighters that have called this Riley their home too at one point in time and that’s what makes my story special. It’s not that I have an incurable illness or that I take a lot of medicine to get me to where I am but it’s because I’m the advocater. I’ve chosen to take my story and make it the story that carries others. I’m the carrier of people who have been beaten to their absolute lowest some of them may not be able to even move forward from it but I stand here and I carry the story because I am more than a high school girl who happens to be sick. I am an advocater, a carrier, a believer in miracles, and a seeker of the light in the tunnel.  These stories have impacted me in a way that makes all of my pity parties I throw so irrelevant, these stories give me a reason to dance in the rain, and such a passion to share them with you. So Jagathon I invite you to carry with me the story of me and my fighters as well because I can promise you that together we will be sure to make a difference in you if you give us the chance.