Sunday, September 15, 2013

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 the 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 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 shutdown 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 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 along side with them you loose 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.

Wednesday, September 11, 2013

You're Too Young To Be Sick

Surgery is scheduled for tomorrow morning and I couldn't be more ready. Super nervous but I know this is the best plan to try and get me feeling better.

As invisible illness awareness week continues I am going to try and keep posting a little more each day about what it is like to live with an invisible illness so here we go! I am only 15 and I was sick when I was little but it wasn't anything major. I mean I just had lung problems and food allergies but it progressively got worse throughout elementary school and middle school. Tyler he was born extremely sick requiring surgery at thirty-six hours old. Sometimes I feel like I'm a teenage girl trapped inside of a 80 year old's body and let me tell you it is not fun at all. All you want to do everyday is lay in bed because you have no energy because it just hurts so bad. You feel like breaking down and crying because you can't do everything on your own anymore. You've lost your independence because you can no longer do tasks that were once so simple but now you are sick they are so hard to do. I have friends who are only in there 20s living in nursing homes.

Yet people always tell me "but you're too young to be sick" I know I am too young to be sick. I hate every minute of it. I want to be a normal teenager and deal with all the stuff that all the other girls my age have to deal with but I usually don't. I mean yes I do get to do a few of the things that all my friends do but I have extra challenges in my way, extra road blocks that stop me from doing what I want to do. I don't feel well enough to go out to enjoy a movie with my friends it always ends up feeling that way. I am thankful my illness doesn't stop me from doing what I want to do because I know it doesn't. I can do anything my friends can do. The only problem is that sometimes I am too sick to do those things.

As a parent you want to keep your kids away from any harm or danger. Anything that could hurt them all you want to do is keep them safe but what if you couldn't keep them from hurting? What if they were hurting so bad every single day? My body harms itself on its own. Going into surgery every single time that comes with it's own risks it never does get easier for a parent to say good bye to their child as the get wheeled off into the operating room.

Anyone can get sick it doesn't matter how old you are. There is childhood cancer and cancer in general.   The same goes for any disease. It sucks that kids have to go through it too. I'm sure you have seen how hard it is for an adult to go through their life being chronically ill. It's so hard to imagine being a kid and being sick. I could tell you it's basically hell. The weight is too much to bear at times. It's not fair for any child to have to deal with any disease. Kids can get sick sadly it's the truth! Chronic illnesses don't mess around and they will attack anyone they feel like it. Just remember that.

I'm having a bad night. Lots of new treatment options and discussions health wise and it's overwhelming. I just want to get home from the hospital all ready, please pray for me and all my friends. 

Tuesday, September 10, 2013

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

Thursday, September 5, 2013

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 where 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 just got 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 too tomorrow for a visit! Everyone here is just referring  me as "Tyler's sister" Yeah 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.