I'm Rachel, a 14 year old girl with OTC (Ornithine Transcarbamylase deficiency). I'm very brave about it, I've had a lot of achievements and I'm very proud of myself!
Ornithine Transcarbamylase Deficiency is a rare metabolic disorder. OTC affects my body's ability to get rid of ammonia, a toxic breakdown product of the body's use of protein. The accumulation of ammonia in my blood travels to vital organs in my body. Complications of OTC can include developmental delay, liver damage, brittle hair, mood swings and affect my performance at school. Having only one kidney further complicates my condition. Since my body cannot handle large amounts of nitrogen, a low-protein diet (38g/day) is essential. I also take sodium benzoate after every meal, which "mops up" excess nitrogen/ammonia.
Thursday, 25 August 2011
Protein overloads
If I have too much protein, I could pass out and I could go into a coma, but those are not easy for me to make sure of, I'd have to eat about 10% of protein in a whole day to be able to do those, but, I can deffinitely start feeling nausious and feel a little bit like fainting. That happened to me 2 months ago, but after that I was absolutely and completely fine, and I felt much better after I took my medicine. This can happen to anyone with a disorder like mine, but, the reactions that your body can make from this can be solved fast.
Wednesday, 24 August 2011
The foods I love the most
I love all foods and meals, but if there are several foods that I had to pick for my favourites, I'd pick Spaggetti, Salad, fruit salad, and chicken and vegetables. Those would be my specific favourites. I hate to pick what I like, but it's better to say my favourites than to say I love all foods when I don't love all foods. All foods are different, and some foods are the same, but I like the best and the healthiest foods.
Tuesday, 23 August 2011
Not understanding
There are so many people I know out there who don't understand what my OTC is, and I do my best to help them understand, but then there are people who don't want to understand. To be around me for a whole day, a person has to try and understand my disorder, it's not really optional. Everyday, I try and act like a normal teeanger, and I don't even have to try, I've always just been a normal girl, besides my OTC, being a normal teenager isn't choice wise, it's just how I am, It's just how all teenage girls are. So, people just need to try their best to understand my disorder, but, if they don't want to, they don't have to, but it would be nessassary to try and understand it. It's the not understanding at all that will be harder, but it can be uderstood in an easier way for people who cannot not understand it no matter what.
Monday, 22 August 2011
Life's what you make it
Today I had a hard day at school, but, the delicious salad role my dad made me for lunch just made my day incredible! It was like biting a piece out of heaven, I just didn't want the salad role to finish. I deal with a very rare disorder, but it's a unique disorder. To those of you who have rare disorders, or even common disorders, you're special, the rest of the world is also special, but people like us with disorders are unique. You don't choose the body you get, or the special body chemicals that come with your body. You don't get to choose them, but you do get to make the most out of them. So, people with disorders have to do the same, except try harder, and it's totally worth it. Be smart with your body. With my OTC, I'm very smart with my body, my body has OTC, but, I'm still choosing what I want to do in my life, my body isn't choosing it for me, I'm choosing it, I'm just telling my body what I want to do. Even though I'm careful with my body, I'm still doing what I want to with my life, and you should do the same. When I first found out about my OTC, I thought to myself ''Oh my word! Now I can't do anything with my life'', but, I was absalutely wrong about that! Don't let your body make life decisions for you, well, you can let your body make life decisions for you, but then make sure your body makes the right life decision, don't give up on yourself, your life, or your body. Make the right decisions or let your body make the right decisions for you, but as I said before, make sure your body makes the right decisions. And just remember, life's what you make it.
Sunday, 21 August 2011
It's just the way it is
It's just the way it is. There's no discussion about it, if I could, I'd eat anything I dared, but it's not worth risking my life. Eat what you want, it's totally your choice, my parents are allowed to eat what they want around me and I don't mind at all. The taste of white, creamy, milky, soft chocolate melting in your mouth can be so hard not to have, but that's what I have to do, and I absolutely do not mind. Have you ever tasted white hot chocolate? Oh my word! I had a teaspoon of it a month ago, and it felt like I was free, just because of one little teaspoon of it. I am a salad lover. I am obsessed with eating all kinds of the world's greatest salads. I'm very impressed with myself that I love salad so much! Actually, right now, I could really eat a salad, but I don't have any salad to eat, doesn't mean I can't make one. I actually can make one. I can make myself a greek salad, and maybe I will, but the point is, I am only allowed to eat certain foods, and all kinds of salads is one. So thank you to Cucumber, Tomatoe, Lettuce, Feta Cheese, Red, Orange, and Green pepper, and Vinigar, Olive Oil, and Mayonaise, a thousand island dressing, and all the famous salad sauces you get. Thank you to all the foods I can eat. It's all just the way it is.
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