Dear Gastroparesis

Hey Gastroparesis! Thank you for teaching me a thing or two about what it means to truly live. Most of the things people are thankful in life are the basic things you think about "health, family, life, a place to call home, and friends." Yet, those things don't always come easy for me. What I am thankful for is quite different than the average person. Most people think because I am sick I don't have much to be thankful for but oh my are they wrong! From an outsider view they don't see what a teenager with multiple life-threatening and rare diseases has to be thankful for? People look at those who are sick and only see the extreme burden that comes with it. My life sucks so much because of you Gastroparesis but you are a true blessing in disguise!

Since I got sick a few years ago I have learned to love and value every minute of my life because I never know what is coming next. Without you Gastroparesis I wouldn't have that. I would probably still be a stupid teenager who thinks she is invincible without a fear in the world! Sadly the circumstances I have been handed have made me think twice. Since you have came along I have learned to love the good, the bad, and the ugly in life.

I have learned that family will stick by you when the going gets tough. They have helped me fight you day in and day out. Helping me make my medicine, spending long days and nights in the hospital, and having to sleep on that very uncomfortable sleeper chair in the hospital. Having a strong family unit is very important in my battle against you and I am so thankful that I have been given people who want to help me fight you.

Once you came along I learned the importance of one simple text from a friend offering support and love. You've shown me the power of prayer from friends and even complete strangers who have never met me in my life. Life is a miracle. As a matter of fact today is a miracle. I wouldn't be alive without feeding tubes, central lines, TPN (IV Nutrition), surgeons, nurses, doctors and all other things that keep me alive. Yet I have learned even with all these things I am still beautiful no matter what scars make a road map on my body.

So for some weird reason I am thankful for you even though you have sucked my life up like a tornado and then spit me back out again to pick up the pieces. You have given me the chance to express myself and raise awareness in my battle against you and Gastroparesis you have show me the type of warrior I am because of you I learned I am a fighter and I have survived the worst before so I can definitely survive it again.

Your Warrior Michaela

Teens with Feeding Tubes

Today is Day 3 of #FeedingTubeAwareness Week! Today we discuss myths and misconceptions when it comes to feeding tubes.

• The most common misconception at my age is: "Teenagers can't have feeding tubes. That's only for babies or the elderly."

A few weeks ago a thread I had commented on into discussing the reasons why some may have feeding tubes, someone told me they weren't aware teenagers could have feeding tubes because those things are only for babies or old people. This was a mother who was fairly new to tube feeding as her child was only four months old. However I am all too aware that that statement is FALSE!

For the past three years I have put together a video for Feeding Tube Awareness Week that shows all the teens who walk a similar journey as me. Every single one person in those videos have feeding tubes. They are all either teenagers or young adults. Here's a list of some reasons why teenagers may have feeding tubes: Mitochondrial Disease, Eosinophilic Disorders, Crohn's Disease, Gastroparesis/Digestive Tract Paralysis. (For this years link click here)

Some of us have had our feeding tube since we were babies but there are many of us who didn't wind up on this path until the last few years. Disease can strike at any age. I know most teenagers like to think we are invincible and nothing bad can ever happen to us like being sick because in our society most people don't get sick until they have had a good long life. That is a great thing and that's how it should be! However, there are those of us who don't fit that common criteria. While I am sure all of us would love to be able to say feeding tubes are surely not a thing for teenagers the truth is they are. Feeding tubes are for anyone who is in need of nutritional support.

I had my first feeding tube placed on November 16th, 2012. At that point in my life it was my very first year of high school and I was miserable trying to battle with the pain that came with eating. I did not have a true diagnosis but we wanted to give an elimination diet a try. First I had started with drinking the formula and that was not an option which was where the feeding tube came to play.

Within two weeks I was feeling so much better! I had loads of energy and the best thing of all was my pain was gone! I didn't have to worry about making sure I was eating enough and the pain that would come after that. My feeding tube gave me my life back. I was able to go do all those normal teenager things thanks to my feeding tube! I played soccer, went swimming, spent nights out with friends, going to Homecoming and many many more fun filled experiences any normal teenager should have. My feeding tubes have never stopped me form being able to live my life. They have only helped me thrive and for that I am very very thankful!

Summer Parties

Homecoming 2014

You see you never know when disease may strike! It won't spare you just because "You think you are too young to be sick." or because "Only babies and old people can need feeding tubes. That can't happen to teenagers." The truth is yes it can and will. There is no discrimination when it comes to feeding tubes and being sick! I have made friends from Australia, Canada, Alaska, London, New Zealand, and many other places in the world who are in the same boat I am. When you look through the teens with feeding tubes video you see faces of teenagers and young adults from all over the world. We are forgotten or not even thought about because teenagers aren't supposed to be sick but it does happen. We are just as susceptible to chronic illnesses as babies and adults! Feeding tubes have helped me and many other teenagers thrive and I know we are all very thankful they exist because without them many of us would have never made it through our teenage years.

Hope

I once heard this quote from Spiderman that says “It’s easy to feel hopeful on a beautiful day like today, but there will be dark days ahead of us too, and there will be days where you feel all alone, and that’s when hope is needed the most, no matter how buried it gets, or how lost you feel, you must promise me, that you will hold on to hope. Keep it alive, we have to be greater than what we suffer. My wish for you, is to become hope, people need that, and even if we fail, what better way is there to live.”

In life I see this quote a lot; like how today is a good day and I am ready for whatever life throws at me. But there are also many bad days when I just can’t take all the pain anymore but I know God is far greater than my problems! Romans 15:13 shows us just that.  “May God, the source of hope, fill you with joy and peace through your faith in Him. Then you will overflow with hope by the power of the Holy Spirit.” So for now we need to hold onto God because He is our one and only true hope.

Hope is important when it comes to Christianity, as it goes hand in hand with faith.  When we have hope we believe things will work out for the better. It means we hold on because we know better days are coming! One bad day is only one bad day. Its 24 hours, 1,440 minutes, and 86,400 seconds. However, sometimes when these bad days come we don’t think there’s much hope and all we want is the answer to the question, “Is there hope?” The answer is yes there is hope.  Humans can’t live without hope. Hope is the driving force that keeps us going. It’s just as important as food and water. Albus Dumbledore once told me “There is always hope in the darkest of times if one remembers to turn on the light.” Hope might be tricky to find, sometimes it’s as quiet as a whisper but other times it rings as loud as church bells. No matter how quiet or loud hope is it’s always there just like how God is always there for us.

Please Don't Forget Us

I think people often forget about the sick teenagers. We aren't adults yet but we aren't little kids either. We can understand what the doctors are doing to us and why and sadly what comes with that is having the knowledge to know that sometimes we are going to have to feel worse before we can feel better. We are sick at a time of our life when we feel invincible. We think nothing can ever stop us in this world and then boom life picks you out of no where; you are stuck in a position when you don't have a choice. Life isn't in your control anymore. As teenagers we want to have that control and when we don't get that it makes it hard to cope.

Teenagers are able to understand what is happening even if we don't get it fully. We don't have the experience adults have. Which can make things confusing and complicated at times. Again that gets all these emotions mixed up in our head and we become frustrated and angry. Even adults know it is hard keeping our emotions in check. Being sick and dealing with all those added emotions on top of trying to manage that normal teenager aspect of life is quite the ordeal. We are at that age where we are gaining more independence than we ever have before. Being able to go out with friends without your parents, driving, some heading off to college, and building a life for themselves. Just imagine being fourteen or even eighteen and suddenly having everything stripped from you. All your independence. What if you needed someone to help you get up to go to the bathroom, to walk, to shower, to help give you your needed medications, to take you to your doctors appointments, and to have someone be there at the hospital with your during your stays almost 24/7? I think that is pretty difficult for a grown adult to even grasp much less teenagers.

Our friends can't really relate to us anymore because they don't understand. They don't know what it's like to be sick and not having the energy to get out of bed in the morning. We want to go to school but we just can't. Missing out on social events and just the daily aspects of life for hospital stays, treatments, and doctor appointments makes us feel isolated. We don't want to loose our friends because we have often been withdrawn from that social setting. Life goes on with or without you and sadly when you are sick life often has to go on without you when you are busy sick in the hospital not being able to do anything. You have that isolated feeling like no one understands you. There's not anyone to relate to and you certainly aren't a normal teenager anymore. It is hard enough being a teenager and having to figure out what you want to make of yourself and grow up to be. Adding on a chronic illness makes that ten times harder. Sometimes I feel like life honestly hates me some days. I can never win with this war and just because how I want something to turn out doesn't always mean it is going to turn out that way. 98% of the time life never goes my way. If life went my way then I wouldn't be sick. I wouldn't have all these diseases that people can't pronounce or have never heard of in their life. I wouldn't have all these tubes sticking out of my body and I can certainly tell you I would not be taking all these pills that I am taking now. I would be healthy, I'd be back playing soccer, attending school everyday and finishing school on time.

Adults are supposed to get sick as they get older. We aren't supposed to be sick. We should be the healthy high school star athletes but we can't. Some of us have grown up being sick and in the hospital but to others it's a whole new world. At such a young age the younger kids don't know what's happening. They are almost left in the dark about many things that are happening because they don't know why they are getting sick from medicine or if their treatment plan is even working. But us teenagers we know. We can experience the bad news first hand. We see our parents cry but yet we understand that pain too. We cry too because we know something bad and scary is happening. We've already been exposed to life as it is and we know what is supposed to happen and what isn't.

Most importantly we are not little kids so don't treat us like that. We are not five and we are very capable of understanding and aware of what is going on in our bodies. We are just like any other young adult except we have these extra challenges in front of us. Our disease does not inhibit our ability to comprehend what you are saying. For most of us our brain is the exact same before our diagnosis a year or two ago as it is now.

All I am asking is please don't forget us. Treat us like any other teen would be treated however understand that we may not be able to do everything our peers do, and sometimes it might be hard for us to express how we feel when so many emotions just overwhelm us it is hard for us to share with you exactly how we feel because most days we don't even know. We are not adults and we are certainly not children. Our life varies much different from them in how you need to treat us and the disease. It's certainly a crazy journey and it is not an easy one either. All I ask is that you treat us like any normal teenager, and are able to help us along the way but also give us some space. That's the only thing we truly want.

Thankfulness

I am thankful. With Thanksgiving approaching many are counting their blessings and sharing what they are thankful for. Most are the general generic I'm thankful for my health, family, friends, place to live, and the list goes on and on. But you know for me those generic things don't come so easily. 

What I'm thankful for is probably much different than the average person...I know being sick probably would mean that I have absolutely nothing to be thankful for because I mean what person who has a life-threatening, rare disease had anything to be thankful for? Well your wrong. I guess people look at people who are sick as if it's some extreme burden and nothing good ever comes out of it. I would say you are wrong. Being sick has taught me how to love life and value every moment because you never know what may happen the next. That's something I think healthy people miss out on. You don't realize what value life really has until it's almost taken from you. Sick people sadly have gone through those situations and I think it makes them some of the most selfless and amazing people. Yes healthy people are pretty awesome too. But these people understand that life is absolutely beautiful and you just have to take a look around and you'll see some breathtaking moments. You learn to love everything. The good the bad and the ugly in life. I am thankful.

Being sick has made me thankful for family. Family who will always stick by your side even when the going gets tough. The ones who fight for you and fight with you. They cherish the little things and celebrate those successes but they also cry with you during those times that aren't so pretty or happy. Having a mom who will take care of you 24.7 giving you medications when you are too sick. Spending late nights at the hospital, or waking up so early to head out the door for yet another procedure, and the worst of all sleeping in the world's most uncomfortable hospital pull out bed. I am thankful.

Thankful for the friends who send their love and prayers. Friends who won't shy away because I am sick. And those who are wanting to understand what I go through. The friends who make meals, care for my siblings, who come visit me in the hospital, the ones who send me simple texts of encouragement, and those who just want me to know they care.  My prayer warriors who make me feel special and important like someone cares about me. I am thankful.

I'm thankful for my life. Being here today is a miracle. I'm thankful for doctors, surgeons, nurses, feeding tubes, central lines, and TPN(IV nutrition). These are the things that keep me alive! Without them I wouldn't have anything to be thankful for. I am thankful. 

So yes in a round-a-bout way I am thankful for being sick. But when you think about it no I am not thankful for being sick. I am thankful for what being sick has given me. Being sick has given me a chance to love life, realize the value of every moment, to know how important friends and family can be, and just what it means to live without a care in the world. I am thankful for life itself, for living, breathing, and dreaming! I am thankful.