When faced with different struggles in life we must learn how to cope and adapt. Learning how to adapt is a complex process. You have to be able to find your "new normal." Your problems are still there, but eventually you become so well adapted that you are able to walk through the fire with only a few scars. While it may appear the world may believe one is handling life fairly well that isn't always the case. People can only see your emotions based on how you look or act and just because someone acts okay it doesn't mean they truly are okay. Those people don't get to see inside your head. While they may think you are handling the complications of life so well, there is a real possibility that you are scared out of your mind.
There isn't much of a choice of whether to move on with your life or not. You have to keep moving forward because time never stops. Life never stops. There's no such thing as a break. You repeatedly dodge bullets day in and day out, eventually you get used to fighting this battle. It shouldn't be that way. That's the sad thing, you know. Some people get so used to fighting that the fight it hardly ever phases them anymore.
The original wounds have now healed but they still tear open from time to time. When those wounds tear open they are just as raw as they were from the start, but this time when the pain comes around again you are used to it. It's almost as if you expect something like this to happen. You expect the negative to happen, because it's easier to prepare yourself knowing the pain to come back. I had protected myself for so long, but I finally allowed myself to believe that maybe things were getting better. I felt so normal that I let my guard down.
Now here I am sitting here preparing myself to re-live this for a second time. I am attempting to fix the wounds that hurt me so much before but this time I know the pain. I've learned how to live with the pain but I just can't explain how. It's easy to explain the physical and medical side of a chronic condition, but the toll it can take on one emotionally is much more difficult to share. The worst feeling in the world is watching your world fall apart yet again, but being unable to explain how much it hurts you. So you get out of bed and put one foot in front of the other every single day putting on a show for the world because maybe if everyone believes that you're okay, everything just might be okay even when it's not.
Friday, December 18, 2015
Tuesday, December 15, 2015
Dear Younger Me
When I was younger I never expected this to happen to me because it was always my brother who was sick. Clearly life has other plans in store. This struggle has made me. The experiences, adventures, and opportunities have shown me what life is really all about and not too many people get to understand life on this scale during their own lifetime much less as a teenager.
Dear Younger Me,
You don’t know this yet, but life will be a battle
So, play your heart out
Love a little deeper
And live for the little things
Soon life won’t be so carefree anymore
It was just another Saturday soccer game
But you never knew it would be your last
Just a few days later you’ll be in a hospital bed
You never saw this coming
You will ask the question: Why?
You’ll ask so many times, but no one knows why
Things weren’t supposed to get worse
But they did
It happened so fast and you had no control
The coming years will be a fight for your life
Surgeries, diagnoses, doctors, procedures, pain
But also love
And loved you are
You have an army marching behind you
They will carry you every step of the way
You’ll feel lost
Angry
Depressed
And misunderstood
However, you are much more than just another sad story
Your story is one of faith, loss, hope, and survival
You will make this story beautiful
Your life is a story
And it will make an impact
No one should have to fight this fight
And you want to make that happen
You were dealt a real bad hand
But always have hope
Because hope will make you fight for your life
Keep on fighting,
Michaela
Tuesday, October 20, 2015
What They Don't Tell You About Being a Teenager with a Chronic Illness
As a teenager, life can be overwhelming. Between the stress of trying to juggle extracurricular activities along with the typical teenager drama one can become exhausted. The course load however is where many students feel like the world is coming down on them when teachers continuously pile on several, different homework assignments every night. If you have finished high school think back to those days when you were struggling with similar tasks. No matter the time frame of when you graduated or will graduate everyone has still been through almost the exact same basic high school struggles.
Now put yourself in the shoes of a teenager who has a chronic illness. These teens have to manage all the basic high school struggles but also deal with the daunting task of keeping their health in check to make sure they are even able to attend school on a regular basis. There's a lot of things the general public doesn't understand about teenagers with chronic illnesses. Someone people don't even think teenagers can get chronic diseases! Even during the time of when you were diagnosed with a chronic illness the doctor is there to tell you all of the health related effects of the disease and how it will change your life health wise. What doctors are unable to say is how it will mentally effect your day to day life.
1. You probably will lose friends.
Chronic illnesses affect relationships. When you are lying in bed for days on end, unable to go to school people will often forget about you. You won't get to be at school every second of the day to spend time with them. When you can't attend social events, such as, Friday night football games or going out to grab a slice of pizza, many friends will eventually stop inviting you. No one wants to hang out with the kid who is always sick and can't get out of the house. There will be a few friends who stick around but that big group of friends you thought you once had no longer understand the challenges you face; So many choose to walk out. You learn who your true friends are when you go through a crisis such as, a chronic illness.
2. It sucks and there will be plenty of bad days to go around!
Maybe they do tell you this, but I don't feel it's something that is well spoken. I think it is only implied. At times when you are at your lowest you'll think that you are never going to get better and life is going to continue on like this forever, but that is not true. Everyone has moments in life that are particularly hard. The only tip I have to offer is to try not to take out your anger on anyone else. This disease is an emotional roller coaster and sometimes you may say things that you don't really mean. You have every right to be mad and upset, because it's not fair that you've been stuck in a position that no one could even fathom, but try to direct that anger somewhere else. It isn't that specific person's fault, due to what has happened to you.
3. Most people won't understand what you are going through.
I heard a quote from one of my favorite TV shows that says "I see people with disabilities all the time, but seeing and understanding aren't always the same thing." (House M.D. Season 8 Episode 14) The people you surround ourselves with will see what a struggle you face on a daily basis, but they won't live what you feel. You are the only one who will ever understand just how horrific the pain can be. They will think they know how you are feeling, because they see the struggle but they don't feel the struggle. If you are too sick to get out of bed and have to cancel plans quite a few people might question you as to why. When you explain, sometimes they still don't see why you are canceling. They might think you are lazy or that you just don't want to hang out with them, even if that isn't the case. People with chronic illnesses want to try and live a typical life however often times we are not able to do so and many don't see why we might have to cancel plans when our bodies aren't cooperating. Try to remind your friends that what they can see and what you feel might be two different views about your health.
Whatever it is being a teenager can be quite the overwhelming experience for anyone. However, when you add having a chronic illness to the mix it can be emotionally taxing on someone's mental health. Many doctors understand medicine but they don't understand how your chronic illness can affect you mentally. You probably won't be prepared for what pops up in your chronic illness journey, but you just have to take a big deep breath and face the problem head on because that is all you can do. The journey is scary and there's many unknowns, but I hope knowing someone of the things no one tells you, will help a teen who is recently diagnosed with a chronic illness understand their journey a little better.
Now put yourself in the shoes of a teenager who has a chronic illness. These teens have to manage all the basic high school struggles but also deal with the daunting task of keeping their health in check to make sure they are even able to attend school on a regular basis. There's a lot of things the general public doesn't understand about teenagers with chronic illnesses. Someone people don't even think teenagers can get chronic diseases! Even during the time of when you were diagnosed with a chronic illness the doctor is there to tell you all of the health related effects of the disease and how it will change your life health wise. What doctors are unable to say is how it will mentally effect your day to day life.
1. You probably will lose friends.
Chronic illnesses affect relationships. When you are lying in bed for days on end, unable to go to school people will often forget about you. You won't get to be at school every second of the day to spend time with them. When you can't attend social events, such as, Friday night football games or going out to grab a slice of pizza, many friends will eventually stop inviting you. No one wants to hang out with the kid who is always sick and can't get out of the house. There will be a few friends who stick around but that big group of friends you thought you once had no longer understand the challenges you face; So many choose to walk out. You learn who your true friends are when you go through a crisis such as, a chronic illness.
2. It sucks and there will be plenty of bad days to go around!
Maybe they do tell you this, but I don't feel it's something that is well spoken. I think it is only implied. At times when you are at your lowest you'll think that you are never going to get better and life is going to continue on like this forever, but that is not true. Everyone has moments in life that are particularly hard. The only tip I have to offer is to try not to take out your anger on anyone else. This disease is an emotional roller coaster and sometimes you may say things that you don't really mean. You have every right to be mad and upset, because it's not fair that you've been stuck in a position that no one could even fathom, but try to direct that anger somewhere else. It isn't that specific person's fault, due to what has happened to you.
3. Most people won't understand what you are going through.
I heard a quote from one of my favorite TV shows that says "I see people with disabilities all the time, but seeing and understanding aren't always the same thing." (House M.D. Season 8 Episode 14) The people you surround ourselves with will see what a struggle you face on a daily basis, but they won't live what you feel. You are the only one who will ever understand just how horrific the pain can be. They will think they know how you are feeling, because they see the struggle but they don't feel the struggle. If you are too sick to get out of bed and have to cancel plans quite a few people might question you as to why. When you explain, sometimes they still don't see why you are canceling. They might think you are lazy or that you just don't want to hang out with them, even if that isn't the case. People with chronic illnesses want to try and live a typical life however often times we are not able to do so and many don't see why we might have to cancel plans when our bodies aren't cooperating. Try to remind your friends that what they can see and what you feel might be two different views about your health.
Whatever it is being a teenager can be quite the overwhelming experience for anyone. However, when you add having a chronic illness to the mix it can be emotionally taxing on someone's mental health. Many doctors understand medicine but they don't understand how your chronic illness can affect you mentally. You probably won't be prepared for what pops up in your chronic illness journey, but you just have to take a big deep breath and face the problem head on because that is all you can do. The journey is scary and there's many unknowns, but I hope knowing someone of the things no one tells you, will help a teen who is recently diagnosed with a chronic illness understand their journey a little better.
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:
Last year during awareness week I wrote this and it still rings true today:
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."
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.
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.
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.
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.‘So your confidence is quietTo them quiet looks like weaknessBut you don't have to fight it'Cause you're strong enough to win without a warEvery heart has a rhythmLet yours beat out so loudlyThat everyone can hear itYeah, I promise you don't need to hide it anymoreOh, and never be afraid of doing something differentDare to be something more’
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!
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!
Thursday, August 20, 2015
Sicker Than Your Average
It hit me yesterday...It hit me like a ton of bricks. Life isn't supposed to be like this. I had a procedure done at the adult hospital yesterday and everyone kept calling me baby or sweetie. I hate those words. In the South it' s most often seen as "southern hospitality" but I didn't see it like that. It makes me feel like I am five years old again but then when I look around the waiting room I realize I am the baby. I am the odd one out. I am sure they thought in their heads what I was even doing their in the first place. In their eyes they would just hope and assume that it was actually an appointment for my mother. We all know that when there is something that's hard to talk about like kids and teenagers being sick people just turn the other cheek because if they think that they don't see it that it doesn't exist. However, that's just not the case.
Most of the people in the waiting room were roughly thirty or forty years older than me. Their bodies are broken down by age. My body is only broken down by who knows what reason to be honest. There isn't a reason when you think about it. There's no reason a teenager much less a child should be sick. At seventeen I have seen the inside of hospitals more than I have been at my own high school. My senior year of high school started this week. We are three days in and I have spent more time out of school at the hospital, doctor's office or laying in bed trying to ease the pain. This was supposed to be my year but sadly it hasn't worked out that way yet. Being called a "baby" was yet another reminder that my life shouldn't be this way. It's another reminder of something that sets me apart from everyone else. I guess I am just sicker than your average...
Tuesday, August 4, 2015
The Positive Aspects of Social Media
There is a positive that goes along with every negative. Social media is used to connect with people, friends, and family that are located all over the world without having to hop on a plane to see what's going on in their life. We have to remember the dangers of spam, overuse, hackers, and connecting with strangers who might be lying about their about various different things such as age, identity, location, and much other personal information. However, I see a different side of social media that many others never could understand. It's a side that connects people over one simple common denominator. We all have this one thing that makes us best friends almost instantaneously. I have been diagnosed with Mitochondrial Disease and a long list of other diagnoses stemming from most every part in my body. Through social media I have been blessed to be connected to several people who also have Mitochondrial Disease or other similar illnesses.
Everyday I get to chat with people from all over the world from places like Australia, New Zealand, London, Spain, Canada, but also people right here in the states. There are no longer moments where I feel isolated and alone because my friends in the "real world" don't understand how hard it is to fight a loosing battle day in and day out. In the different online support groups we can talk about our struggles, clinical trials, and give suggestions as to what has worked for us in hopes that it will benefit the others reading the comment.
You always hear so many bad stories about the dangers of social media but rarely we ever hear the amazing stories that have allowed people to come together because of social media.
About three years ago I started becoming active within the chronic illness community in the online support groups available. I met a girl named Chrissy who has Trigeminal Neuralgia. She is two years older than me and lives in Canada. At first we weren't sure if would even wind up being good friends but three years later we have become closer than I could have ever imagined!
"We make two halves of a whole idiot."
I was still mostly undiagnosed at the time I met Chrissy. Chrissy introduced me to a woman named Brynn who is three years older than myself. We instantly hit it off! Her symptoms and diagnosis was very similar to some of the issues I was having at the time. Just days after meeting her she had posted a photo on Instagram and the location was tagged to the hospital I also go to. I freaked out and little did we know we only live 45 minutes apart. Chrissy in Canada gave me an amazing friend who happened to live in the next town over. I met Brynn at the mall two months later. The three of us are now inseparable!
Just this last week Chrissy flew down to meet me for the very first time. I finally got to hug my best friend in person and that was the best feeling ever!
During the time Chrissy spent here we were also able to get a picture of three of us all together! The laughter and happiness in the room was amazing! The three of us with feeding tubes, scars, and central lines have one big battle that we've had to face for years now but because of the two of them make my battle is a little bit easier. Without social media I would probably be depressed and feeling so alone because no one is able to understand but thanks to these connections such as Facebook, Skype, Instagram, Kik, and Twitter we are able to see that we aren't alone and there are literally thousands out there fighting similar battles!
Left to Right: Chrssy, Michaela (myself), and Brynn
Monday, July 20, 2015
I am...
I am strong and unique.
I wonder about new adventures.
I can be an advocate for those without a voice.
I hear words of wisdom.
I see a future so far yet so near.
I want to see a cure for mito in my lifetime.
I am strong and unique.
I pretend that I'm okay even when I'm not.
I feel the love from my family.
I touch the soft comfort of my blanket.
I worry that I won't ever get better.
I cry about the past and future.
I am strong and unique.
I understand more than anyone my age ever should.
I say you wouldn't last a day in my shoes.
I dream of a world without disease.
I try to work hard in school.
I hope to one day become a famous writer.
Sunday, June 28, 2015
Why You Should Choose To Say "Yes" To Organ Donation
Getting your driver’s license is something every teenager
dreams of. Getting behind the wheel for the first time, being in control, and
finally having more independence is one of the best feelings in the world.
However, there’s one part most people forget when they go to the DMV to get
their license. That one thing is to check the little box that asks if you want
to be an organ and tissue donor. Saying yes to organ donation is one of the
most selfless things people can do in their lifetime. After your death a trashcan will either get your organs, or maybe a child, a mother, a grandfather, a sister will have the opportunity to continue to live with your organs.
One person can save up to eight lives with an organ
transplant and enhance 50 others with eye and tissue donation. That means eight
people get to live on with their lives and continue to do all the things they
love and have extra time with their loved ones all because you checked
“yes.” The transplant recipient will get
to do all the things we take for granted everyday: find the love of their life,
get married, graduate high school, have their first kiss, and even continue to play their favorite
sport.
Currently more than 123,000 people are on the waiting list
for an organ transplant but sadly there are not enough people who are willing
to donate their organs. Therefore twenty-one patients die waiting for their
call for that new organ. Approximately 150 people are added to the list daily.
The good thing is there are no costs to the donor or the donor’s family for the
donation of their organs.
When I was fifteen, I chose to become a donor when I got my
permit at the DMV because I want something positive to come out of my death
(whenever that maybe). Life will blossom because I chose to let another person
live. To me organ donation feels like I am paying it forward. I can "outlive myself" with that special gift. I want to feel
like my life has a purpose and that purpose would be fulfilled if someone would
get to continue to live and breathe because of the choices I made in my life.
I have also seen first hand what it is like for someone to
have so much joy and gratitude towards life because someone checked ‘yes” so
that they could live. A friend of mine named Alex became a heart-lung
transplant recipient in May of 2013. Alex made it his mission to educate
everyone he came in contact with about organ donation. His father says he urged
all his friends to become donors when they got their license. The year and a
half following his transplant Alex battled several different complications post
transplant. He took each day in strides and lived every day to its fullest
pursing his love for music. Come the end of January 2015 Alex became very sick
with a severe infection and was admitted to the Children’s Hospital. Sadly Alex
left the earth on February 12th, 2015.
Alex brought great joy to everyone he met and inspired
hundreds through his Instagram account where he advocated for organ donation.
Recently, someone had commented on his last picture he posted before he passed away and said “I got my drivers
permit today and chose to be a organ donor, because of your account. I realized
how much it can truly save someone’s life! RIP! <3” He truly made a difference in the lives of others because he choose to educate the world about organ donation.
Alex got to spend an
extra year and a half with his family because of an organ donor. I got to meet
Alex because of an organ donor. I would’ve never meet Alex if it wasn’t for that
donor and I will be forever grateful for that opportunity. A total stranger
made one decision that forever changed not only Alex’s life but also the life of everyone
who knew him. With organ donation you don't just change the lives of the recipient but all those around them as well.
I want to live to a day where no one has to die because the
call for a new organ didn’t come in time. A transplant can extend a patients
life for several months but also possibly several years. That’s another
birthday, another Christmas, and another moment spent with those they love.
There is so much meaning and value in life that we don’t realize until it’s
almost taken from us. Anyone who has had a transplant or watched a loved one go
through a transplant will tell you it’s the most beautiful and bittersweet
thing. While one family is mourning many others are given a second hope. Life
comes out of death and while there is great sorrow there can also be much joy.
Please remember that the DMV is no longer the only place you are
able to register to become an organ donor. In life we are told to always give
back and what better way is there to live than being a donor?
If you would like to learn more about organ donation please
visit: http://donatelife.net/
To register to become an organ donor: http://donatelife.net/register-now/
To read Alex's story click here.
*All photos taken from Alex's Instagram page with permission.*
Monday, June 15, 2015
CCK 2015
I just spent the past week at what I call one of the best places on earth! There is not much that I can say that explains how I feel about The Center for Courageous Kids! This place has been my home for the last three years. I've attended camp here since 2012 for some of the family weekends but then in 2013 I spent my first week as a camper during the summer. The best memories have been made here from my first year at camp.
It will always be my favorite year because it was the year I fell in love with this place. There was so much to do and everyone knows what it is like to be me. To have to struggle with some sort of chronic illness.
Last year in 2014 I met a girl named Elisabeth. She has Cystic Fibrosis. Elisabeth is quite a few years younger than me but she is the only one who understands what it is like to be seriously sick but, not only seriously sick her brother also had Cystic Fibrosis and he passed away a little less than two years ago. Elisabeth knows what it is like to be following close behind that same path that your sibling has already gone down. She knows how scary it can be. We talked forever at the dance last year about our story and our experiences. Both stories seemed very similar. I didn't have to explain what it's like to have a feeding tube, a port-a-cath, take countless medication and being able to swallow about 10 pills all in one time.
This camp has shown me I am not alone and it has given me a week to just be like all my other friends even if I can't attend a "real" camp. The only downfall is that Elisabeth and I live roughly 9 hours away. It will be extremely challenging to see each other but I know we will be able to make things work.
We cried so hard Friday night at the end of the final campfire. It was a very bittersweet moment. I am so lucky to have met Elisabeth but I hate that this was my very last year as a camper. I can't put into words about how much this place has meant to me in these last few years. It's always a great way to start off the summer and I will be forever thankful for this place! Home is where the heart is and my heart is at CCK.
To read Elisabeth's blog click here.
Friday, June 5, 2015
A Bittersweet Friendship
Almost a year to the date on a beach getaway my family sat in a nice restaurant eating a delicious dinner. Well almost all of us...You see my brother and I have a disease that makes our digestive tract unable to move and digest food properly in your gastrointestinal tract. Due to the severity of the disease we are both fed through a central line in our chest to get the nutrients straight into the blood to bypass the digestive tract. Everything the average person eats on a daily basis we can't have.
Sitting at that dinner table that night was particularly difficult on Tyler. He was only nine at the time and was starting to realize he is different than everyone else. Having to watch people do something we can't like eating feels like torture. Thankfully at home our parents don't request us to sit at the table with them while they eat. We have an "open door" policy. If you want to sit down with the family you can if you don't want to sit down with them for dinner you are able to do what you need.
However, a time like this there wasn't an option. There was no place to escape to that would allow us to get away from the aroma. As I saw Tyler struggling I offered to take him outside to the back patio because I knew it was hard for me to sit in there much less a little boy to sit and watch everyone eat. We found some nice rocking chairs to sit in and started making silly little jokes. Anything to get our mind off things. Soon we paused looking out into the ocean he began to speak and said "You know what?"
I replied "What?"
He proceeded to tell me that if I didn't need to have tubes and only he would be the one who was sick and with the tubes he would do it. I don't like my tubes at all but I would do it!
I broke down and that little boy didn't know one reason why I would be crying. He thought he had made me upset and I just took him into a big embrace and we stayed that way for what seemed like hours. My little man was so selfless and he always worried about me and how I was feeling when he should be worrying on himself. I am supposed to be the one who worries about him. Mentally the disease puts a big strain on his little mind which can't comprehend all of what has occurred. Yet, Tyler is the one telling everyone else to stay strong.
Tyler and I have always had the closest relationships that brought our bond even closer. I believe we became best friends for that reason. We were close before we were both critically ill but after we both became each other's biggest supporter. I can understand many of the emotions he has and help him through while there are some procedures he has to help me through. It's tough to see the fear and worry in his eyes because I know it all too well. If we lived a typical life I doubt never have this bond with my brother.
It's definitely bittersweet. While it sounds so amazing to have a partner to go through all this together so neither of us had to be alone I would never want the situation to be like it this. Never in my wildest dreams did I imagine we would both be stuck together in this awful situation! The two of us have had to be strong for each other and that's what has made me remain positive because I know I have to do it for him.
That moment on the beach that summer night I knew we would be okay. I knew we would make it through the worst and the much more to come. We would survive and live life to the fullest all because we had each other as our source of strength. It was definitely a shock to hear this from my youngest brother but it just further validated the reason why he is my best friend and my superhero.
Sitting at that dinner table that night was particularly difficult on Tyler. He was only nine at the time and was starting to realize he is different than everyone else. Having to watch people do something we can't like eating feels like torture. Thankfully at home our parents don't request us to sit at the table with them while they eat. We have an "open door" policy. If you want to sit down with the family you can if you don't want to sit down with them for dinner you are able to do what you need.
However, a time like this there wasn't an option. There was no place to escape to that would allow us to get away from the aroma. As I saw Tyler struggling I offered to take him outside to the back patio because I knew it was hard for me to sit in there much less a little boy to sit and watch everyone eat. We found some nice rocking chairs to sit in and started making silly little jokes. Anything to get our mind off things. Soon we paused looking out into the ocean he began to speak and said "You know what?"
I replied "What?"
He proceeded to tell me that if I didn't need to have tubes and only he would be the one who was sick and with the tubes he would do it. I don't like my tubes at all but I would do it!
I broke down and that little boy didn't know one reason why I would be crying. He thought he had made me upset and I just took him into a big embrace and we stayed that way for what seemed like hours. My little man was so selfless and he always worried about me and how I was feeling when he should be worrying on himself. I am supposed to be the one who worries about him. Mentally the disease puts a big strain on his little mind which can't comprehend all of what has occurred. Yet, Tyler is the one telling everyone else to stay strong.
Tyler and I have always had the closest relationships that brought our bond even closer. I believe we became best friends for that reason. We were close before we were both critically ill but after we both became each other's biggest supporter. I can understand many of the emotions he has and help him through while there are some procedures he has to help me through. It's tough to see the fear and worry in his eyes because I know it all too well. If we lived a typical life I doubt never have this bond with my brother.
It's definitely bittersweet. While it sounds so amazing to have a partner to go through all this together so neither of us had to be alone I would never want the situation to be like it this. Never in my wildest dreams did I imagine we would both be stuck together in this awful situation! The two of us have had to be strong for each other and that's what has made me remain positive because I know I have to do it for him.
That moment on the beach that summer night I knew we would be okay. I knew we would make it through the worst and the much more to come. We would survive and live life to the fullest all because we had each other as our source of strength. It was definitely a shock to hear this from my youngest brother but it just further validated the reason why he is my best friend and my superhero.
Friday, May 29, 2015
Your Assumptions Can Hurt
People assume many things based on how we look on the outside. They assume we are healthy, happy, loved, and that life is going great. However, sometimes what they assume is wrong. People have all these little quirks inside of them that are invisible. We can't assume that a person a person is happy. We bury things deep inside to hide from people. We also can't assume that someone is healthy. You see 96%, of chronic illnesses are hidden or "invisible." This is where the term invisible illnesses come from. A person can look entirely normal on the outside meanwhile their body inside is attacking itself. The aches and pains all hidden behind a smile.
About a year and a half ago I was volunteering at an adult/elderly care facility. This was my first time ever coming out to help. A woman who was also helping out that day was probably in her 60s or so, had struck up a conversation with me as we were walking to down the empty hallway to get some supplies from the closet. She proceeded to tell me how good this experience will be for me. I had quietly agreed with her as I was too shy to strike up a real conversation. As she continued she told me this will show me how thankful we should be that we can eat, drink, walk, run, talk, and do most everything on our own. I replied "Yes, Ma'am," Yet I thought to myself how many of those things I couldn't truly do without help or even at all. She didn't know as, my picc line and feeding tube were hidden beneath my sweater I wore during the cold autumn evening.
Her inability to see my disease was the worst. I just wanted to scream and shout at her, but she didn't know. There was no way for her to possibly know. Yet, I stayed silent. I often wonder how I would respond today. I am definitely much more vocal about my disease now than I was. I would probably politely try to explain that. That many of those things are not so easy for me. I take too many pills to count everyday. I have a central line leading directly to my heart. A year and a half ago I had just been put on TPN about two months prior to this conversation with her. This was a time where I had been NPO for everything. Today things have slightly changed. I am drinking some and able to eat a little more than before but that doesn't mean they still come easy. I still get sick and am in pain every time I eat or drink however much of the time it is now tolerable. Running and walking hurts my joints terribly and there are days I am too weak to get out of bed much less walk or run a mile.
Sometimes I wish I could just scream and shout at those people who don't think I am sick or am faking it. Apparently I do a great job on hiding the daily pain behind my eyes and that smile I proudly wear daily. It's practically impossible for them to look on the inside. Before anyone truly meets me they believe I am healthy but sadly that's just not the case. I receive these labels such as "normal," "healthy," and "typical teenager" all because I look just like your average. I'm supposed to be the teenager who wakes up every morning and heads to school, the teenager who stays awake till two in the morning doing absolutely nothing, the teenager who doesn't care about anyone but herself, and the teenager who thinks she can take on the world and is completely invincible but I'm not. I'm the teenager who wakes up in the morning and goes to the hospital, the teenager who has learned more than once that one stupid thing can kill you in seconds, the teenager who goes to bed at six in the evening because she's too exhausted from fighting her body all day to keep her eyes open, and the teenager who is trying to play her cards the best way she can with the stack she's been dealt.
It's not easy for anyone to be judged by all these social standards we have come to assume in our everyday life. I don't think we look deeper beyond the face or appearance. They always say to never judge a book by its cover but I find that to be impossible. We look at people for their stereotypes but when we sit down and try to understand their life that's when the table turns. I don't want to be known for my disease but I don't want people to diminish it and pretend it doesn't exist because it does. Mitochondrial Disease and all my other diagnoses are very hard to live with and I think people need to be aware that just because I don't look sick doesn't mean I'm not. We all hear people who tell us how great we are doing and that we are fine but we all have that one moment where we want to shout and break through our silence and tell them the truth. Today go out in to the world and try your hardest not to assume or judge based on stereotypes. It is hard not to pass judgement but just try and one day you might just realize the differences you never noticed in life.
About a year and a half ago I was volunteering at an adult/elderly care facility. This was my first time ever coming out to help. A woman who was also helping out that day was probably in her 60s or so, had struck up a conversation with me as we were walking to down the empty hallway to get some supplies from the closet. She proceeded to tell me how good this experience will be for me. I had quietly agreed with her as I was too shy to strike up a real conversation. As she continued she told me this will show me how thankful we should be that we can eat, drink, walk, run, talk, and do most everything on our own. I replied "Yes, Ma'am," Yet I thought to myself how many of those things I couldn't truly do without help or even at all. She didn't know as, my picc line and feeding tube were hidden beneath my sweater I wore during the cold autumn evening.
Her inability to see my disease was the worst. I just wanted to scream and shout at her, but she didn't know. There was no way for her to possibly know. Yet, I stayed silent. I often wonder how I would respond today. I am definitely much more vocal about my disease now than I was. I would probably politely try to explain that. That many of those things are not so easy for me. I take too many pills to count everyday. I have a central line leading directly to my heart. A year and a half ago I had just been put on TPN about two months prior to this conversation with her. This was a time where I had been NPO for everything. Today things have slightly changed. I am drinking some and able to eat a little more than before but that doesn't mean they still come easy. I still get sick and am in pain every time I eat or drink however much of the time it is now tolerable. Running and walking hurts my joints terribly and there are days I am too weak to get out of bed much less walk or run a mile.
Sometimes I wish I could just scream and shout at those people who don't think I am sick or am faking it. Apparently I do a great job on hiding the daily pain behind my eyes and that smile I proudly wear daily. It's practically impossible for them to look on the inside. Before anyone truly meets me they believe I am healthy but sadly that's just not the case. I receive these labels such as "normal," "healthy," and "typical teenager" all because I look just like your average. I'm supposed to be the teenager who wakes up every morning and heads to school, the teenager who stays awake till two in the morning doing absolutely nothing, the teenager who doesn't care about anyone but herself, and the teenager who thinks she can take on the world and is completely invincible but I'm not. I'm the teenager who wakes up in the morning and goes to the hospital, the teenager who has learned more than once that one stupid thing can kill you in seconds, the teenager who goes to bed at six in the evening because she's too exhausted from fighting her body all day to keep her eyes open, and the teenager who is trying to play her cards the best way she can with the stack she's been dealt.
It's not easy for anyone to be judged by all these social standards we have come to assume in our everyday life. I don't think we look deeper beyond the face or appearance. They always say to never judge a book by its cover but I find that to be impossible. We look at people for their stereotypes but when we sit down and try to understand their life that's when the table turns. I don't want to be known for my disease but I don't want people to diminish it and pretend it doesn't exist because it does. Mitochondrial Disease and all my other diagnoses are very hard to live with and I think people need to be aware that just because I don't look sick doesn't mean I'm not. We all hear people who tell us how great we are doing and that we are fine but we all have that one moment where we want to shout and break through our silence and tell them the truth. Today go out in to the world and try your hardest not to assume or judge based on stereotypes. It is hard not to pass judgement but just try and one day you might just realize the differences you never noticed in life.
Tuesday, May 26, 2015
Being Sick is a Gift; That I Would Probably Exchange For a Refund!
A blessing and a curse they say. They say to make the best of it because you can't get out of this bad situation. You are stuck living with this curse 24/7 till the day you die.
Amongst all the storms and the ugliness we find the beauty. I always say my life got sucked up into a tornado and spit back out again for me to pick up the pieces. It's a pretty true saying. I had a fairly normal life before I became sick several years back; however when you look back the symptoms were only getting worse but it all still seemed to be normal. Then one day it hits you like a ton of bricks out of no where. From the day of your diagnoses your life changes sometimes for the better but also for the worse. Life kept going for everyone else but for a month I lived inside the walls of an 8x10 hospital room and my life just stopped. It's a very isolating and lonely feeling being stuck behind the glass of the hospital looking out on the people who's lives are continuing on as they would any other day. Meanwhile, my sophomore year of high school put on hold, the dreams of getting to hit the soccer field every week seemed so far away, and friends just didn't send a text or even bother to check up on me.
As soon as I got out it seemed like people thought I was better and that just wasn't the truth. I look healthy and beautiful despite the disease, because I have what they call an "invisible illness" as people describe it "You can't see it, but I can feel it." That's a blessing because it would be a tragedy to be both sick and unattractive! Yet also a curse because people can't tell when I feel absolutely horrible and can hardly put one foot in front of the other.
I lost my freedom and my dignity. Needing help to get up to go to the bathroom, having your Mom help you to shower and get dressed daily. You are extremely vulnerable to everyone. Always dependent on family or nurses to help you get by day to day. A normal sixteen year old girl goes out on dates, spends time gossiping with friends, and is gaining the privilege to drive. On a daily basis things change and I could be feeling super, fantastic one day but tomorrow comes along and I'm not so super, fantastic. The disease is completely unpredictable making me entirely unreliable most of the time.
Due to the nature of my disease I am unable to eat food. Whatever you would eat on a normal day. Think for a second. What did you have for dinner yesterday? I didn't get to have that. How about holidays? Most people don't realize our culture is surrounded with food. Society thrives on food. SuperBowl Sunday, Halloween candy, birthday cake, Thanksgiving dinner, Easter eggs, and Christmas cookies are all things I have to miss out on. I don't get to savor the sweet taste of a strawberry or the cringe bitter taste of sour candy. Just imagine your life without all those things? Being fed through tubes to keep you alive is not the most glamorous thing; especially as a teenager.
This disease has stripped me of most things in life. It's not fair for anyone to have to live like this let alone a teenage girl to live this life. My life was cursed with this disease and I hate it so much. However it is a beautiful gift. There was a time in my life where I didn't know what it was like to think of tomorrow being my last day on earth, or valuing maybe even just one bite of pizza during a night out with friends. My perspective is new. I wake up everyday ready to see what life has in store for me even if it is spending the day at school or in the hospital, both places that aren't so exciting. Now don't get me wrong if the time passes by I might just ask for a refund on days that are entirely horrible; yet there are many reasons I might refuse that refund. Life turns out in some strange ways. This disease changed me into who I am today and why I am that person. I was changed because I was faced with that dramatic life altering event that most people are lucky to not witness until they are old. I feel as if I am a better person for overcoming this ordeal. I have more compassion and love towards everyone I meet because we never know what is right around the corner.
Amongst all the storms and the ugliness we find the beauty. I always say my life got sucked up into a tornado and spit back out again for me to pick up the pieces. It's a pretty true saying. I had a fairly normal life before I became sick several years back; however when you look back the symptoms were only getting worse but it all still seemed to be normal. Then one day it hits you like a ton of bricks out of no where. From the day of your diagnoses your life changes sometimes for the better but also for the worse. Life kept going for everyone else but for a month I lived inside the walls of an 8x10 hospital room and my life just stopped. It's a very isolating and lonely feeling being stuck behind the glass of the hospital looking out on the people who's lives are continuing on as they would any other day. Meanwhile, my sophomore year of high school put on hold, the dreams of getting to hit the soccer field every week seemed so far away, and friends just didn't send a text or even bother to check up on me.
As soon as I got out it seemed like people thought I was better and that just wasn't the truth. I look healthy and beautiful despite the disease, because I have what they call an "invisible illness" as people describe it "You can't see it, but I can feel it." That's a blessing because it would be a tragedy to be both sick and unattractive! Yet also a curse because people can't tell when I feel absolutely horrible and can hardly put one foot in front of the other.
I lost my freedom and my dignity. Needing help to get up to go to the bathroom, having your Mom help you to shower and get dressed daily. You are extremely vulnerable to everyone. Always dependent on family or nurses to help you get by day to day. A normal sixteen year old girl goes out on dates, spends time gossiping with friends, and is gaining the privilege to drive. On a daily basis things change and I could be feeling super, fantastic one day but tomorrow comes along and I'm not so super, fantastic. The disease is completely unpredictable making me entirely unreliable most of the time.
Due to the nature of my disease I am unable to eat food. Whatever you would eat on a normal day. Think for a second. What did you have for dinner yesterday? I didn't get to have that. How about holidays? Most people don't realize our culture is surrounded with food. Society thrives on food. SuperBowl Sunday, Halloween candy, birthday cake, Thanksgiving dinner, Easter eggs, and Christmas cookies are all things I have to miss out on. I don't get to savor the sweet taste of a strawberry or the cringe bitter taste of sour candy. Just imagine your life without all those things? Being fed through tubes to keep you alive is not the most glamorous thing; especially as a teenager.
This disease has stripped me of most things in life. It's not fair for anyone to have to live like this let alone a teenage girl to live this life. My life was cursed with this disease and I hate it so much. However it is a beautiful gift. There was a time in my life where I didn't know what it was like to think of tomorrow being my last day on earth, or valuing maybe even just one bite of pizza during a night out with friends. My perspective is new. I wake up everyday ready to see what life has in store for me even if it is spending the day at school or in the hospital, both places that aren't so exciting. Now don't get me wrong if the time passes by I might just ask for a refund on days that are entirely horrible; yet there are many reasons I might refuse that refund. Life turns out in some strange ways. This disease changed me into who I am today and why I am that person. I was changed because I was faced with that dramatic life altering event that most people are lucky to not witness until they are old. I feel as if I am a better person for overcoming this ordeal. I have more compassion and love towards everyone I meet because we never know what is right around the corner.
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