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.
Friday, August 23, 2013
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!
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!
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. Carefree 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 isn'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 the 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!
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!
Subscribe to:
Posts (Atom)