Friday, August 23, 2013

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 feed 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 loose 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 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 loose some foods and that does not get any easier. You are basically mourning the loss of a 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 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 superheros. 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 any one 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 heros <3

Wednesday, August 21, 2013

Back to School

So this week on Monday I started school! This was my first year going back after doing online school for 9th grade. I was super nervous for obvious reasons. I was nervous about what everyone would think considering none of them know I'm sick. Only a few people in the school do but they aren't in any of my classes. I have been connected to feeds everyday and my pump hasn't beeped once. It's a record!! I haven't been tolerating feeds so I have to stay continuous. I have been having a blast! My first block is chemistry and I'm the only 10th grader in the entire class. Everyone else is older than me. Second block I have a class with some people I know so that made things a lot better. I'm not a loner! Third block I know a few people but not anyone I'm friends with. So far everything has gone great with my medical stuff. Today someone ate something they shouldn't have in class near me so I told the teacher and she said she'll take care of it. So hopefully tomorrow the problem is fixed. Then I have early dismissal and get to go home at 1:15. Which is good because I'm exhausted by that point. Keeping up with homework is hard because I just don't have the energy to do it. Plus my headaches have gotten worse so it is so hard to focus and concentrate. Neurology started me on a new medication that I will take tonight so we will see how that helps. I wish I could get rid of them once and for all! Besides all my medical drama school is great and I'm happy. It's nice to get away from all the bad stuff happening in life right now and focus on school. Keeping me busy so I don't have to worry about it at that moment because I just forget. Life is great! Let's just hope things start going smoothly with my medical drama and everything gets taken care of.

Sunday, August 18, 2013

Where to Begin

I'm not really sure where to begin with all this. So I'm just gonna talk. On Tuesday Tyler was admitted to the hospital due to yet another central line infection. We have made lots of big changes since then. If you remember Tyler's last hospital stay he had a vascular surgery done. The surgery was for the av fistula. After we got back from the beach trip Tyler had his appointment and they were going to wait another month to try and access the fistula. Well when Tyler was admitted they really didn't have a choice about what to do. They decided to access the fistula and they got the IV in place and ready to go. They were able to run fluids, iv medications, and TPN off the fistula. So it was decided that they will pull the central line since it is infected. That was done on Friday and he was sent home on Saturday. It was really iffy whether he was able to come home. They don't have much support set up for the fistula because Tyler was the second pediatric patient in that hospital to get one for daily use but he's home and on IV antibiotics. They did a repeat echo in the hospital to check out the endocarditis whether it was still there, got smaller, or if it was bigger. We didn't get the best news. The spot on Tyler's heart got bigger. So there's still an infection. He will be on IV antibiotics for 8+ weeks until the infection is killed and the spot is gone. This hospital stay was kind of a shock and lots of changes so it's been hard. Everyone is just trying to deal with it in there own ways. I haven't been really happy lately ever since my migraines have gotten really bad. My head still hasn't stopped hurting. I finally was able to increase the dose to 50mgs and that hasn't made much of a difference either. I start school tomorrow so I really want these migraines to go away. I'm still not able to focus and concentrate enough to read a book. So school is definitely gonna be hard to handle. I'm also not tolerating feeds. At most each day I get in 32oz on average. That is only half of what I need. My rate is 160mls an hour and sometimesI have to decrease that because it gets to be too much. So I will be on my pump at school until I can get a better rate. I'm kinda nervous about how people will react to that. It really doesn't bother me about how people handle me being sick and all but right now it kind of does just because I've had so many issues at school with being sick and all. School brings back so much anxiety for me. I'm not really sure what to think. Go with the flow I guess. On Thursday we had my meeting at the high school and it went well. I don't think we will have that many problems this year which made me feel more comfortable about going. We also got my lunch changed to third lunch so I don't have to sit through lunch and I can leave at 1:15. I think that's the best thing in the world. For me watching people eat, smelling food, etc is pure torture. I want to eat so bad but I know I can't because  I will get so sick. It's just not worth it.
Lately it just feels like my entire world is crashing down on me. I have so much to deal with and sort through right now. I'm so stressed about everything and it's beginning to get to that point where it's too much to handle. No matter how much I try to make things better or help it's never works out. I had so much responsibility when Tyler was in the hospital. I had to watch my brother Brycen almost every day. I cleaned up after dinner because I was home alone with him. I cleaned the house and ended up getting yelled at for that because I didn't put something away right. I cleaned the entire house by myself and no one seemed to realize that I did it. Yet they realize something is wrong and they complain about it. I didn't bother to say it was my fault. I was probably yelled at because everyone was stressed out but I still don't like it when I really didn't do anything wrong. I can't take it anymore. I really just want a break that's all I want. I want everything to get better and I don't see why life shouldn't get better. In my opinion on I don't see things getting better to the point where I want them too. I want mito to stop attacking my brother, I want to eat real food without getting sick, and I just want everyone to be happy again and not so stressed. Every time things do look like they will get better just a little better my entire world comes crashing down on me. I'd really like a break from reality. Life sucks right now. I will be the first one to tell you that. No one can lie and tell you it doesn't because it does. I really do love my life it just gets too hard sometimes. It's overwhelming. You feel like your drowning and you can't escape. Right now I just need to breathe. I need too sort through things and grab a hold of life again. I'm not depressed at all I've just had enough. I can only handle so much. People tend to forget I'm only 15 and everything I've had to deal with in my life has been so hard most adults have never gone through what I'm going through right now. I've stayed strong only because I've had to. For the sake of everyone else you need to work out life and in the end when it comes down to it. Everything will be so good again. No one will ever understand how I feel because they aren't me. I'm the only one who can deal with how I feel right now. Earlier this week someone asked me if Tyler was dying. I was so upset. This is one thing I've really wished would never have to come up. Yes, Mitochondrial disease is a degenerative disease.  Tyler will get worse over time and most kids diagnosed before age 5 don't make it to there teenage years. Those diagnosed before age 10 more than likely won't make it to 20. We have hope that Tyler will be here until he grows old. I don't look at Tyler and think oh he's dying. No I look at my brother and I see that he is the happiest 8 year old boy on this planet. He has a family who loves him, and he gets to experience the world. He appreciates life more than anyone I ever know. It's the little things that count and I want to make sure that he has everything he's ever wanted because he deserves it more than anything else. He's been through hell and back and we aren't stoping now. So please don't ask me if Tyler's dying. If you want to be a pessimist we are all dying. Each and everyday we all get one step closer to death. You don't know whether tomorrow will be your last day, or will you grow old and live a full life. So yes technically Tyler is dying and so are you but you need to be optimistic about things. Choose to look on the bright side right now if you are reading this you're alive and that is something to be thankful for. Life every day like it's your last and I promise you that you will have the best life ever.

Friday, August 9, 2013

Beach Mission Trip

I was able to get to enjoy the beach trip! It was an amazing experience. I wasn't feeling very well but I still decided to go. It was nice to forget about life and everything else for a little while. Care free with some of the greatest friends around. The first night we walked on the beach and shouted out Happy Shark Week. Jesus Loves You! It was awesome to see how many people seemed appreciated that we told them that. Of course the fact that it being shark week at the beach probably ins't the best thing in the world for some people but we loved it. The next day we went to the Soup Kitchen. Some worked at the soup kitchen and others remolded a building for counseling center. We had to paint and put down carpeting. After we hung out at the beach for the rest of the day. On Tuesday we went to Cypress Gardens and a water park. We all loved the water park I think it was the highlight of everyone's day. It was a little weird when everyone was staring at my stomach. I know most weren't trying to be mean about it but some people weird and it really bugged me. That night we went on the ghost tour! We walked around Charleston learning about ghosts. I was super tired. Wednesday we did communion on the beach and went home after touring a few churches. I am happy to be home. My migraines are still there and are really annoying me. We are increasing my amitriptyline to 25mgs this week then 50mgs next week. (you have to slowly increase the dose) I hope it helps. I'm still not tolerating feeds well. Even two ounces in my stomach hurts a lot. I have to try formula tonight so we will see how it goes I guess. I've made the decision to go back to school this year. I'm really nervous but I'm sure I'll be okay. We decided on early dismissal because I'm not sure I would be able to handle a full day of school. That's pretty much it for now. See ya!