My whole life, I have been feeling like a freak because I thought it was stupid that I was the only one, who did not scream or cry everytime I got hurt. I have a few friends with different diseases, so they have shown me, that I can really injure my body, I just don't feel it. A little before my 17th birthday, I read about CIPA on the Internet. It freaked me out! I did not care about falling before. I kept saying, "I'm fine!", but the truth is: I did not know that! Some of the children with CIPA has really injured their bodies without knowing it. It is scary!
Well, my day usually starts up with an eye check to make sure I didn't pull them out or scratch them in my sleep(many CIPA sufferers have eye problems) - I'm one of the lucky ones. Then I go to check my temperature to make sure I start up with a nice body temperature. I always have breakfast (I don't feel hunger, but I do know it's important to eat). I also have an alarm on my cell phone (or watch when I'm in shcool), which reminds me to go to the bathroom. After every meal, I check my mouth, tongue, gums - count my teeth! Normally, I go to school. I have to go with my thermometer everywhere, so I can keep an eye on my temperature throughout the day! When I'm not in school, I hang out with my friends (I have always been clumsy, but since I got to know more about CIPA, I have become more careful). If it is summer, my parents tell me to take ice-bags with me, in case I should get overheated! Because I cannot feel pain, I cannot feel when I'm sitting wrong with my hands and feet, which can cause serious damage! Sometimes, I use a wheelchair to make sure my hands and feet will be fine. Everytime I run, I have to check my toes for swelling! Throughout the day I check my feet, hands, joints, toes (and so on) for swelling. Most of the time, I don't see my bruises before the ending of the day, but I also have to check my skin for bruises. Most of the day, I have to check my body for EVERYTHING! I only have few hours to have fun and be a child, who likes to have fun. I can say, that I'm not at the hospital as much as last year, because I always got hurt before reading about CIPA. It clearly opened my eyes!
Well, my day usually starts up with an eye check to make sure I didn't pull them out or scratch them in my sleep(many CIPA sufferers have eye problems) - I'm one of the lucky ones. Then I go to check my temperature to make sure I start up with a nice body temperature. I always have breakfast (I don't feel hunger, but I do know it's important to eat). I also have an alarm on my cell phone (or watch when I'm in shcool), which reminds me to go to the bathroom. After every meal, I check my mouth, tongue, gums - count my teeth! Normally, I go to school. I have to go with my thermometer everywhere, so I can keep an eye on my temperature throughout the day! When I'm not in school, I hang out with my friends (I have always been clumsy, but since I got to know more about CIPA, I have become more careful). If it is summer, my parents tell me to take ice-bags with me, in case I should get overheated! Because I cannot feel pain, I cannot feel when I'm sitting wrong with my hands and feet, which can cause serious damage! Sometimes, I use a wheelchair to make sure my hands and feet will be fine. Everytime I run, I have to check my toes for swelling! Throughout the day I check my feet, hands, joints, toes (and so on) for swelling. Most of the time, I don't see my bruises before the ending of the day, but I also have to check my skin for bruises. Most of the day, I have to check my body for EVERYTHING! I only have few hours to have fun and be a child, who likes to have fun. I can say, that I'm not at the hospital as much as last year, because I always got hurt before reading about CIPA. It clearly opened my eyes!
There are a lot of check-ups you need to do through your day. I hope the doctors will find a cure very soon, so you can get to enjoy your life!
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