Mitochondrial Disease Awareness Week!

Today kicks off the start of Mitochondrial Disease Awareness Week 2013. Just the perfect time to make everyone aware of the awful disease that has robbed children and adults of so much. Did you know every thirty minutes a child is born who will develop mitochondrial disease by age 10? That is 4,000 children each year in the US alone. This makes Mitochondrial Disease just as common as childhood cancer. I could sit here and tell you all these facts about mito but it would mean nothing unless you experience it first hand. You have hardly any energy to even get out of bed every morning. Some kids can't even tell their moms I love you just one time before they are taken away from their mother's arms. No energy to breathe, no energy to eat, no energy to walk, no energy to talk, and sometimes there is just no energy to do anything but lie in bed all day but do anything but sleep. It is the harsh reality for several families trying to cope with this awful disease. Tyler's body doesn't have the energy to walk community distances so most of the time he relies on a wheelchair to go from place to place. He gets his nutrition through his AV fistula since his gut shut down because it could just no longer function anymore. Probably because he just doesn't have the energy to make it work anymore. The fact that 98% of children die before age 20 who are diagnosed with this disease is just horrible. There is no known treatment or even a cure. Every night you just lay in your bed and pray for a miracle. Something that will come along to just fix everything and make it all better again. The body slowly deteriorates and all you can do is watch. There are medications to try and slow the process you take vitamins and supplements. You treat the problems as they arise. That's all you can do. Most kids die because they are even diagnosed just because of a lack of awareness. 90% of children diagnosed before age 5 don't make it to age 13. Girls have a better chance of surviving than boys do. What if this was your child? Would you want them to have those odds? We become so close to other families who have children with mitochondrial disease. You fight alongside them you lose some battles and you win some. Mito you suck! you are awful disease and everyone hates you one day you will be gone because we will find a cure. We are supporting the fighters, adoring the survivors, honoring the taken, and never, ever giving up HOPE because sometimes hope is all we have left.

Invisible Illness Awareness Week

Yesterday was the kick-off of invisible illness awareness week! I wasn't able to post because I had an endoscopy yesterday and I am STILL in the hospital but I decided I feel decent enough to post today. So here it goes! This is my life with an invisible illness. This is my reality.

Have you ever gotten the flu or have been so sick you just feel like you can't even do anything? That's how I feel EVERYDAY. I look like your typical teenage girl. I go to church every Sunday and hang out with the best youth group in the world, I play soccer, I go to school everyday, I love music, and I would probably start a conversation with anyone I meet. Little would you know I have an invisible illness that effects my life on a daily basis. I am constantly in pain, fed through a feeding tube, and spend countless hours in doctors offices and hospitals hooked up to tubes and wires all while trying to keep a brave face and moving on like everything is okay. Looks can be deceiving I don't look sick and that is the beauty of it all! You can't see my insides. If you looked at my body from the inside out you would see a completely different story. The best way to describe it is like picturing World War II in your head just for a few minutes...that is what is going on in my body right now my body is taking a beating except there are no sides it's just one side my body beating itself up. Autoimmune disorders suck!!

I have been through hell and back with these illnesses. You always get those comments "but you don't look sick" people think I'm lying and it's disgusting. It's what people don't see that always gets them. They don't see the countless IVs, blood draws, needle pokes, doctor appointments, hospital stays, holidays in the hospitals, birthdays without cake, surgeries, procedures, medications, treatments, CT scans, and all the other medical stuff/supplies that we have to deal with daily.  Would you like to come live in my world for a day? It's full of pain, nausea vomiting, medication, and a feeding tubes. I don't think you would want to it hurt so much inside and there really isn't much they can do about it.

Being sick so much has brought me up to deal with the pain. I now I have a pretty high pain tolerance and I can go on caring around like everything is all fine with a smile on my face everyday and you have no idea how bad my pain is. Why I don't want you to know because all you would do it pity me because I don't need it I can do anything you can do I just have a few extra things I need to do. Well...I can't eat but you get my point. If there was one thing I wish people would stop saying to those with a chronic illness it would be "stop complaining" or "but it could always be worse." I think I have ever right to complain I'm in pain 24/7 you wouldn't be too happy if you were in pain either. No you complain about how you can't go to school because I have this little cold. All while I push myself to go to school every morning. This last one right here is the one that makes me angry "but it could always be worse." Personally I don't see how things could get any worse. I mean maybe they can but just because someone else is hurting worse than me doesn't mean my problems don't matter because mine do just as much as the next guy. Basically by saying that it could be worse you are saying well what you aren't going through isn't too bad so you will be okay. I am still suffering too and I wish people would see that constant pain that I feel. I'm sorry if someone has it worse off than me but I am still having a hard time too.

Please remember not all disabilities are visible you can't see what I battle on a daily basis you only hear stories. You can't see my insides you are not a medical genius who has everything figured out in this world because if you did then I would be cured and I wouldn't be sick and I would be like worshiping you  right now for curing me. Anyway Happy Invisible Illness Awareness Week! Remember Mitochondrial Disease Awareness Week is next week!!! You must be wearing green!!!!!! :D

Hospital Life

Laying in a hospital bed attached to tubes and wires. I think that's how most people like to spend their Thursday nights right? I got admitted on Tuesday night. First I wasn't able to go back to school on Tuesday morning and we waited for a call back from GI we went for IV fluids and we would just chat with GI. We grabbed labs just to be safe and sure enough, we got a call that night by the on-call gi that I had to be admitted because I was extremely dehydrated and all my other labs were all over the place. Not very good at all. We didn't expect to be admitted till Wednesday.  Finally rehydrated my labs still aren't stable. Feeds are just getting started (it's a Joey pump for all those tube feeders out there you know my pain.) My weight has taken a gigantic drop so no one is happy about that at all. It is gonna take a long time to get back up there again sadly. They are trying to manage my pain finally!! I'm happy about that! It's not going so well but they are at least trying to get my migraine under control. Tomorrow I will have a gastric emptying scan done to see if my stomach functions and empties properly hopefully all will go well. Tyler is coming down to the hospital tomorrow for a visit! Everyone here is just referring me as "Tyler's sister" But I'm stuck here this time, not Tyler sorry. I'm just happy to not be NPO tonight so I can have some ice chips.

One Simple Word

Food. It's a simple word that means so much. To me, food means something that I can't have. It's something I don't think I will ever be able to have unless a cure comes soon. In the dictionary it says food is any substance that sustains your life but food makes me sick it doesn't sustain my life. I have to be deprived of food just to be healthy. That sounds wrong on so many levels but it's true. Food brings horrendous pain and suffering. I'm on a strict no food diet it means I have to have this special formula and I can't have any food at all. I'm fed through a feeding tube in my intestines. Most people can't stick to a diet let alone no food. For a person on a diet trying to lose weight they can cheat here and there and be okay. However, for me that is a different story. Absolutely no cheating. If I cheat I will be on the floor literally screaming because the pain hurts so bad. Cheating brings, pain, sickness, vomiting, extra medicine, and a day or several days in bed. The same thing happens with food fails. If I am doing a food trial and eat a portion of food then I start to have symptoms I've lost the food and I'm in so much pain. I'll never get that food back that I failed. Yes, I will gain some safe foods along the way but I'll also lose some foods and that does not get any easier. You are basically mourning the loss of food. That's the best way to put it. It sounds stupid but what if you were told to stay away from food after you've been trailing that food for six weeks?
Food is everywhere. Our society revolves around food. Just think about it for a minute. Social media, TV shows, commercials, parties, Thanksgiving, Halloween, and even your morning coffee. I understand that most people can however there are those of us who can't. Eat for me to eat all the food you want. Ice cream, cake, pizza, french fries, anything that you want to eat. Eat it without a care in the world. I can't wait till one day when I can do that. So please don't ever take eating food for granted there are me and thousand of others who would do anything to take one bite of food without having to suffer the consequences.

To The Parents of Chronically Ill Kids

Last night was a bad night. Tyler's fistula line had to be pulled and my parents haven't been instructed how to place on yet. My Dad used to be an EMT so he has placed IVs and Mom has been taught how to but it was a crash course until they could do the real training. So my parents poked Tyler three times and were able to access it. They didn't have to go to the ER. Tyler was screaming and he shed a few tears. I thought how hard the had to be on my parents. They had to place an IV on their own child. So this is for the parents of any child who has a chronic illness. Thank you.

To the parents of chronically ill kids:

You guys are superheroes. No one on this earth could do a better job than you do even when you feel like you aren't doing the right thing. I know you feel helpless like you can't do anything. All you can say is "it will be okay" and "it will be over soon" and "everything will be better" and a cure will come." Don't give up. Most people as a parent could never watch their child go through countless medical procedures day in and day out. Countless pills, treatments, hospital stay, doctors visits. All of that just to try and keep them healthy. You watch them hurt, scream in pain, and cry. You know you can't do anything about it but you will always be there for them. You won't give up you want that cure to come now. You could be like my parents and sit there holding their child in their lap crying because they can no longer eat food anymore. You hold them down while a nurse tries to place an IV. Could you mentally even think about putting an IV in your own child? Mix their medications, make tube feeds, draw blood, make IV nutrition. It is scary to think about. Every night you pray for a miracle, a cure, and just for help to make it through the day. You were thrown into this all at once and you are doing the best you can. I know sometimes you don't think it is good enough but you are trying and that's all we can ask for. No parent should ever have to watch their child suffer like this. Sick kid parents go through hell more than anyone should ever in a lifetime.  It's hard I know. I can't lie I watch my parents everyday deal with me and my brother. You are doing the best you can. It's hard but you will make it through this.

Thank you for everything you do. You guys are my heroes!