Later this week Tyler and I will be featured in the local newspaper. So, I will let y'all know the specific date when that is confirmed. Have a great FTA Week to everyone!
If you have any questions about feeding tubes just ask!
Sunday, February 7, 2016
Feeding Tube Awareness Week 2016
Feeding Tube Awareness Week has always played a large role for me since 2013. Every year since then I have created a video of all of the teenagers who have feeding tubes and this year I was able to collect a large volume of pictures! I am so happy to have created this video for the fourth year in a row. I hope you enjoy it!
Sunday, January 31, 2016
The Dinner Table
I live with multiple chronic illnesses and one of those is called Gastroparesis which translates to 'paralyzed stomach.' Due to this disease I have to avoid all food. I get 100% of my nutrition (TPN) through a central line leading to my heart. There's nothing my body can tolerate through my digestive tract. It's ironic that doctors typically encourage eating healthier and a wider variety but my doctors had to cut everything from me...The question I seem to get all the time is 'How does it feel to sit at the dinner table while everyone else is eating, when you can't eat?'
I swear my answer is almost always the same and I just have it memorized by now! Honestly it does not bother me as much as some think but it is different for every person. My parents have never forced us to sit at the dinner table if we don't want to. Typically for me, I spend that time in my room doing homework or I go into the shower so I can't smell the food that is being cooked downstairs.
Family dinner is not as big of a deal in my house as it is for some. Out of the six of us who live in my house a third of us are unable to eat any sort of meal. My parents have tried to instill the idea that food is not a central role in our life. Yes, food is needed to survive however, when looking at just how much food is portrayed in our daily lives. Billboards, advertisements, Halloween candy, Thanksgiving, peanuts at a baseball game, dinner dates, birthday cake, Easter eggs, Christmas cookies, any sort of party, and even going to the movie theater getting popcorn to enjoy is a trend in our society. Although the world needs food to survive and we obviously can't take that away from those who are lucky enough to be able to eat we also need to realize just how big of an aspect in our lives that food has become.
What if you had to sit in the lunchroom at school and watch everyone eat pizza? The catch is that you can't eat it. You can smell and see the pizza but you are only allow to sit there and watch the others eat. The situation is similar to putting a treat out in front of a dog but not allowing them to eat the treat. There are many situations when I am unable to avoid sitting down at the table while all of the others eat. While being around food doesn't bother me as much as some it is still challenging for me. No matter what the situation is it's difficult to watch everyone do something that you are unable to do. For me that something would be eating food.
Think about that New Year's resolution you created about going on a diet. By now many people have already given up on that resolution they created or if they are still at it they have certainly cheated a few times. When you cheat on a diet the there are no true consequences besides not being able to loose weight as fact. A person on a diet can cheat and go on about their life however people like myself don't have that luxury.
Being unable to eat food is not only about the physical consequences of eating, it is also about the social and emotional aspect that comes along with it. Although I may want the food, I just can't have it. If I choose to "cheat" and eat food there will certainly be consequences and I don't mean sitting in timeout for 15 minutes. The consequences consist of nausea, vomiting, abdominal pain, cramping, and I could go on and on... The only times I cheat and eat food is when food is in front of me as part of a social event. I do have more self control at my age to know that I can't eat the food in front of me because it will make me sick, but I have to admit that I can't always handle that craving of wanting food so bad. I know it will make me sick but I do it anyway. Most of the time I don't allow myself to do that but sometimes I can't wrestle in my mind what's worse: the physical consequences of eating food or the mental consequences of watching the world do something that you would give anything to do. If it's hard enough for me to sit there imagine being several years younger than myself. My brother is only ten years old and has never truly been able to eat food ever. I can only imagine what war goes on in his head. The mental battle between doing what's best for your health and how you feel but also struggling with the mental realities of what is like to live a life without food.
I am thankful to live in a household that has come to realize that food does not need to be the center aspect of our lives. We know this because we have learned to live without. I know I can come home and have a place where I don't have to worry about food. I understand that we are unable to make the world change just because of how myself and others have to live but I wish people could become more understanding and empathetic towards those of us who have to live a life without food.
I swear my answer is almost always the same and I just have it memorized by now! Honestly it does not bother me as much as some think but it is different for every person. My parents have never forced us to sit at the dinner table if we don't want to. Typically for me, I spend that time in my room doing homework or I go into the shower so I can't smell the food that is being cooked downstairs.
Family dinner is not as big of a deal in my house as it is for some. Out of the six of us who live in my house a third of us are unable to eat any sort of meal. My parents have tried to instill the idea that food is not a central role in our life. Yes, food is needed to survive however, when looking at just how much food is portrayed in our daily lives. Billboards, advertisements, Halloween candy, Thanksgiving, peanuts at a baseball game, dinner dates, birthday cake, Easter eggs, Christmas cookies, any sort of party, and even going to the movie theater getting popcorn to enjoy is a trend in our society. Although the world needs food to survive and we obviously can't take that away from those who are lucky enough to be able to eat we also need to realize just how big of an aspect in our lives that food has become.
What if you had to sit in the lunchroom at school and watch everyone eat pizza? The catch is that you can't eat it. You can smell and see the pizza but you are only allow to sit there and watch the others eat. The situation is similar to putting a treat out in front of a dog but not allowing them to eat the treat. There are many situations when I am unable to avoid sitting down at the table while all of the others eat. While being around food doesn't bother me as much as some it is still challenging for me. No matter what the situation is it's difficult to watch everyone do something that you are unable to do. For me that something would be eating food.
Think about that New Year's resolution you created about going on a diet. By now many people have already given up on that resolution they created or if they are still at it they have certainly cheated a few times. When you cheat on a diet the there are no true consequences besides not being able to loose weight as fact. A person on a diet can cheat and go on about their life however people like myself don't have that luxury.
Being unable to eat food is not only about the physical consequences of eating, it is also about the social and emotional aspect that comes along with it. Although I may want the food, I just can't have it. If I choose to "cheat" and eat food there will certainly be consequences and I don't mean sitting in timeout for 15 minutes. The consequences consist of nausea, vomiting, abdominal pain, cramping, and I could go on and on... The only times I cheat and eat food is when food is in front of me as part of a social event. I do have more self control at my age to know that I can't eat the food in front of me because it will make me sick, but I have to admit that I can't always handle that craving of wanting food so bad. I know it will make me sick but I do it anyway. Most of the time I don't allow myself to do that but sometimes I can't wrestle in my mind what's worse: the physical consequences of eating food or the mental consequences of watching the world do something that you would give anything to do. If it's hard enough for me to sit there imagine being several years younger than myself. My brother is only ten years old and has never truly been able to eat food ever. I can only imagine what war goes on in his head. The mental battle between doing what's best for your health and how you feel but also struggling with the mental realities of what is like to live a life without food.
I am thankful to live in a household that has come to realize that food does not need to be the center aspect of our lives. We know this because we have learned to live without. I know I can come home and have a place where I don't have to worry about food. I understand that we are unable to make the world change just because of how myself and others have to live but I wish people could become more understanding and empathetic towards those of us who have to live a life without food.
Friday, December 18, 2015
Dodging Bullets
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.
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.
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.
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