Sunday, September 20, 2015

Mitochondrial Disease Awareness Week 2015

Mitochondrial Disease Awareness Week is celebrated globally during the third week of September every year. The dates for this year are September 20th-26th. Every year people come together to bring awareness to this awful disease.

Here's some facts:

  • Mitochondrial Disease never presents itself the same way. Even two siblings both who have the disease can have entirely different symptoms in how the disease presents itself. 
  • Mitochondrial Disease is just as common as childhood cancer, yet the in the case of mito, there isn't a treatment protocol, no cure rate, only a handful of specialists, and very little awareness.
  • There is no reliable or consistent means of diagnosis.
  • Mitochondrial Disease is an inherited chronic illness that can be presented at birth or a patient may develop later on in life. Anyone at an age and develop the disease.
  • Every 30 minutes, a child is born who will develop Mitochondrial Disease by the age of 10.
  • The NIH (National Institute of Health) only devotes $11 million dollars to Mitochondrial Disease research a year.
  • Mitochondrial Disfunction is linked to Type 2 Diabetes, Alzheimer's, ALS, and Parkinson's Disease.
  • Mitochondria produce 90% of the energy your body needs to function.

Last year during awareness week I wrote this and it still rings true today:

I can sit here and tell you all the awful statistics and facts about Mitochondrial Disease and how it rips families apart but that would mean nothing unless you actually experience Mitochondrial Disease for yourself. Mito is like taking out your car battery and replacing it with two double AA batteries. It's obviously not going to function well and becomes overworked very quickly. That is similar to what a person who has Mitochondrial Disease feels like. Organs failing right in front of your eyes. Being told your child has a rare disease and you can do nothing about it. No treatment. No cure. Watching your child suffer in a world full of pain and fatigue. Having their bodies basically shutdown in front of your eyes. Holding them while they scream in pain. Telling them that everything will be okay and the pain will go away soon...but will it? Having to tell your child's brothers and sisters that their sister or brother will be going to heaven soon.The fear in their eyes and the pain the experience everyday. A Mom and a Dad thankful that their child survived the night. Another family grieving the loss of their child. Mitochondrial Disease is real and this is a reality for so many families battling this disease every day. Currently, there is no treatment and no cure. One day we will find one but that cure needs to come soon.

This year my sister and I have chosen to pass around ribbons and little business cards around school to help spread awareness and hopefully spark some interest and much needed awareness to this disease that has robbed myself and my brother of so much. Mito has caused our digestive tracts to fail which means we require IV nutrition to keep us alive. And that's only the beginning.

During Mitochondrial Disease Awareness Week and every week during the year wear green, tell some facts, share a ribbon, and raise awareness. I don't have an escape. This is my reality 24/7.  While you might be able to turn the other cheek and pretend the disease doesn't exist my family and thousands of other families will never be able to do the same.

"Some say I'm crazy and obsessed. I call it making a difference. I know what I am doing is right and that's all that matters. You can either support me or choose to look the other way. It's your choice. Either way I won't stop making a difference in this world."

Tuesday, September 15, 2015

How Hunter Hayes Showed Me I Am Not "Invisible"

Music seems to speak to me in such a powerful way. It is something that I can turn to whenever I want to block out the rest of the world during a time when I am stressed, upset, or just need a moment to relax. One of my favorite artists that I have become drawn to over the years is Hunter Hayes. It all first started with his first album that drew in attention to the world. I remember hearing the song "Wanted" for the first time in the car and I absolutely fell in love. However, I didn't become a true fan until 2013, prior to his album "Storyline" being released.

A specific song spoke out to me called "Invisible.” Ever since I first heard the song I can’t seem to get the lyrics out of my head. This song showed me exactly why I fell in love with Hunter Hayes. “Invisible” was written to show people they are not alone in trying to overcome anything whether it is following their dream, bullying, or whatever else they may want to accomplish in this world. For me the song means that I'm not alone in this fight and the pain that I'm feeling now is only temporary. No matter what I am going through right now, there is always going to be something up ahead that I can look forward to that will be far greater than anything I am going through right now.

Everyday I fight to live; I battle with Mitochondrial Disease and several other chronic conditions. People often call my disease an "invisible illness" because I look healthy from the outside but if you turned my body inside out you would see a different story. This song speaks for me when I don't have the words. I am different from everyone else and sometimes that makes me feel like I am invisible. High school is about figuring out what crowd of people you fit in with, and being different while fighting a disease makes things ten times harder. I do not attend school as often as I would like, I take almost twenty pills a day, I live in pain, I can't eat food like everyone else, and I have three different tubes sticking out of different parts of my body at all times.

I realized a long time ago that I am an outcast in the eyes of everyone else; They don't understand me. A couple of lines from the song play out like this.

‘So your confidence is quiet
To them quiet looks like weakness
But you don't have to fight it
'Cause you're strong enough to win without a war
Every heart has a rhythm
Let yours beat out so loudly
That everyone can hear it
Yeah, I promise you don't need to hide it anymore
Oh, and never be afraid of doing something different
Dare to be something more’
 Every single day I used to always put on an act and play that part of someone I'm not. I'm not healthy, and I am certainly not like everyone else. I decided from the day that I heard this song I would show the world who I really am. I am that girl who choose to live life despite this disease. People need to hear that I am not ashamed of what this disease has done to my body. Knowing that I am not ashamed of having this disease makes them feel more comfortable about being around me. I have opened up more than I ever dreamed I would've since I heard this song.

Since I heard this song I have been to three concerts where Hunter Hayes has preformed, the most recent being last Saturday, and I still feel so emotional every time he plays the song. I am not invisible. I am who I am, and no one needs to be afraid of that because I am happy being me. I have overcome some pretty incredible odds. I don't want to change myself. I've grown confidence and became stronger through this song. I might be different, but I know that I am not invisible when it comes being different because of my disease. I have a voice and I will use it to make an impact.

Tuesday, September 1, 2015

Tips For Surviving High School With A Chronic Illness

High school is supposed to be the best four years of your life. The Friday night football games, Prom, college applications, and the regular load of classwork can be challenging for the average student but for one with a chronic illness or disability that makes attending school challenging it can be even harder.

Have a 504 plan because it will help you to navigate through the loads of make up work from missed days,  along with with things like extended time on tests, and easy access to the nurse's office when needed. Not all teachers are going to understand your situation and a lot of them will be less than helpful. You also aren't in elementary or middle school anymore. You need to be able to take charge yourself and not have your mom do everything for you. Showing teachers that you are responsible and willing to work with them will make them more open to working with you. Tell the school what you feel like you need because the school officials won't always think about specifics. These accommodations are only there to help you and not hurt you.

Do not separate yourself from events and other students at school. Just because you have a chronic illness does not mean you shouldn't participate in prom, Friday night football games, pep rallies, spirit week, or join in any club. Despite the circumstances you don't want to deprive yourself from the normal activities of high school. You have just as much right to be apart of school functions as everyone else. Even if you are drowning in make up work make sure you go out and have a little fun.

Get some rest! Most chronic illness patients struggle with fatigue. Take the time to care for your body and treat yourself to a nap every once in a while.  Spending 7 hours at school is quite draining especially when you have to walk around the building over and over again just to get from class to class. Grades is important however so is your health. If your body doesn't get enough sleep and you aren't functioning properly you won't be able to focus and keep up in class.

Keep as caught up with your classes as possible. Once you miss a day in class it is very hard to keep up the pace just like the other students. When you are there make sure you are doing the work put in front of you and not slacking off. This will help to save you from a large amount of stress. It will also allow you to spend more time doing fun things versus sitting inside trying to get caught back up on algebra homework.

High school is complicated already and adding in a chronic illness can make things even harder on students. With these helpful strategies my high school experience has been made a little easier. Three weeks ago I started my senior year and I'm very excited although very nervous because I know the amount of added stress is not what I need but I plan to be as productive as possible to make my high school career successful!