Finger Update!

Do you remember when I wrote about when I broke three of my fingers? Well, it is only 9 days since, but they look a bit better. I went to the hospital this morning, and they told me, that they would be fine soon. This time, my hospital doctor was there (the one who usually helps me, because he knows more about CIPA). Better, because my doctor was not with me this time. Last time, the doctors who helped me had no idea what CIPA was... They have since read a bit about it, so now, a few more doctors know what it is. Yaay!

Danish Exam!!!

I went to school around 10:20 AM, was at the school around 10:45, went up to our classroom, saw the door and went away again.... I got so nervous, that even the sight of the door could break me down! My teacher phoned me around 11:15 AM (had to go to the exam at 11:25), but they had time to take me in, so I went back to the classroom. I did what I had to do, went out while my teacher and the censor had to discuss what grade I would have. I got a C, which is really not bad. I thought I would get a D, but I did better this time. Congrats to me!

Eurovision Song Contest 2010

Congratulations to Germany's Lena Meyer-Landrut for wining the whole thing with the song "Satellite" and her amazing performance.

Denmark, this year, took the 4th place. Gongrats to us! We did a good job chosing a better song this year. But I still think our last year's song was better!

Broken Fingers

Yesterday, I accidently broke three fingers at work. After, I started lifting boxes. Trust me, the doctors went crazy at the hospital!!

Well, we have very heavy doors in the basement at work, and a colleague and I had to get some boxes in the basement (pretty heavy boxes with lots of antiques), but the door slammed my hand. I just managed to move the hand so only three fingers were trapped. My colleague asked if I was ok and I said that I was, and then we lifted the heavy boxes up in the room above. Our boss helped us with some of the boxes, since we were only two people in the shop. Later, I had to go to my doctor, and she discovered that three of my fingers were broken. No serious damage. We quickly went to the hospital, and I told them about the boxes and CIPA (it's not everyone who knows what it is). Thank God, my doctor went with me. They told me that my fingers would be fine again in a few weeks. I'm soooo happy for that!

Visiting Friends

Yesterday, I went with my family to one of our friends' house and had a wonderful time. Our dogs were playing all day long in their garden and we went to say hello to all of her rabbits. Aw, they are so cute.. Baby is the name of my mother's girl and Daisy is mine! They are really adorable... Thanks to our friends for an amazing day!! <3

And this time, we did not only talk about how much I should take care of myself! It was nice :-)

Dangerous Bacon Attack!

A couple of days ago I got a scary fire mark on my right arm. My father had fried bacon and when I went to make burgers, the bacon grease went simply to attack! It is not so bad anymore, but my arm did look so scary!

The Stupiest Things!

My parents have always been overprotective around me with CIPA (my brother does not have it, but he does not feel much pain on his mouth. He always pull his teeth out or bite his lips just like I do). In kindergarten, all the teachers knew that I have CIPA. They were also very protective, but in a different way. My aunt and other family members would teach me when to say "ouch" to make people know that I'd fall or get hurt in other ways. They probably had a hard time with that. I've always been a bit clumsy and done what I wanted, without giving signs of when I have fallen or got hurt in other ways. At a young age, my brother used to destroy the support of our bunk beds, so there have been many bumps in our room (including sprained my wrist up to several times) The first times, I didn't react to it, but after my aunt teached me to give signs, I would start screaming! The first years of school, I would scream or only say "ouch", then the teachers would ask "where does it hurt?" and I would think "where the hell should I know?". I have always been bullied at school, but when I switched to another in the second class, it was more violent. They would not only use ugly words, but only start beating me up(they thought it was strange that I only responded to the emotional, never the physical). CIPA sufferers feel touch, pressure and emotional pain, just in a different way from others. If you ask me, a life without emotinal pain would be much better!

Pain Is Here For a Reason

1: our body tells us when something is wrong and it needs to be fixed

2: is a limit that prevents us from harming ourselves

3: it notifies you when you're sitting wrong so you don't destroy your joints!

4: it notifies you of the problems that are not visible

5: it prevents you from getting burned!

6: without pain, you can do anything without knowing when something is wrong

7: without pain, you don't know when to stop and can injure yourself even more!

8: without pain, you can break bones without knowing it!

9: without pain, you can scratch, pull - in many ways - destroy your eyes

10: without pain, you can't feel the problems and die when it's too late to fix them!

There're probably a lot more, but is really too tired to think. If you can find more reasons, please leave a comment :-)

Stand Up To CIPA

One of my beloved friends have made a Facebook Group called "Stand Up To CIPA" - it is for all CIPA sufferers, people who know someone with CIPA and for all the wonderful people who wants to help!

STAND UP TO CIPA!

Need Your Answers!

I have already posted a thread on Hannah's Board about my question to everybody. Most of the ppl on HB have not heard of CIPA, so before I tell them, I have asked a question that I want them to answer first: Would a life without pain be a good life?

What do you think?

My answer is: NO!

Doctor Visit

I usually go to the doctor every Tuesday, but because she had a day off, I had to go Wednesday! Now, when I have opened my heart around CIPA, some of my friends would ask me: How many times do you go to the doctor? My answer would be: Depends on how often I hurt myself! My doctor told me to come as often as I could to check for infections, scratches, cuts, blue marks - and just to make sure I don't have any other problems I can't feel. (The good part is that I don't have any other problems at the moment, except CIPA).

My younger brother is the lucky one. He has no problems. My parents were worried he had when my mom became pregnant. Luckily, he is 110 % fine. Lucky boy!

Btw, wish you all a nice day!

CIPA Talk...

I actually don't talk much about CIPA with anybody - I do not want to freak my friends out! But today, I actually told myself to ask a person on a board I'm a member of, called Hannah's Board. I only asked because I was worried she could have something like CIPA, because I often read messages about her being hurt. It was actually weird, because then I remembered, that you would have to be born with it, and she would probably be dead if she had never been diagnosed. Well, we wrote bit about it and now I know, that she does not have CIPA(she seems pretty happy with that). She actually seems like a very cool person :-D

Jumping In The Bed

When you cannot feel pain, it sucks when there's one thing you just LOVE to do! I love jumping in my bed, but my head did definitely not appreciate that yesterday, when I fell and hit my head into the floor (well, another run to the hospital) - don't worry, I didn't kill myself this time! It should look crazy because:

1. I'm too tall to jump in the bed.
2. I don't even know how I can fall from the bed when it's like 100 times bigger than me! (yeah, it is a HUGE bed).

Do I sound too much of a kid? Well, you try living a life not being allowed to be a kid because "you can hurt yourself" - it is not good being overprotective, huh?

Scars!

I would have no life if I should count all my scars! What I hate the most are my lips. They look dry and ugly! As an infant, I chewed on my lips which definitely have made their marks! For some reason, I also liked chewing on my tongue, and I almost bit my tongue off! There's one more bad thing: I bite my nails! Crazy, huh? I hate that, because I sometimes bite my fingers too, so they look weird and are very fat and ugly! Eew!

A Day In Life!

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!

Welcome!

Hello and Welcome! I am a 17 years old girl from Denmark. I was born in early 1993 by two wonderful parents. Unfortunately, after living for a few months, I got my teeth. I began to chew on my hands, lips and tongue. It was terrible, my parents had told me.

Read my story:
As a baby, I never cried when the doctors did tests that usually make babies cry. I never cried when I was hungry or - actually - I just never cried. When I was about 5-6 months old, I started teething! My parents thought this was the most horrible thing they've ever seen in their life. I started chewing, but never on my baby toys, always on my hands (If I chew on my baby toys, I usually did it too hard). They thought it was more scary when I started chewing on my tongue and lips, because I could be covered in blood without feeling it. They went to about 5-6 different doctors, but none of them could give them an answer. When they went to their next doctor, he could see what was wrong by first sight: I have CIPA (Congenital insensitivity to pain with anhidrosis) and is not able to feel pain.

Congenital insensitivity to pain with anhidrosis (CIPA) is an extremely rare inherited disorder of the nervous system which prevents the sensation of pain, heat, and cold — or any real nerve-related sensations (including feeling the need to urinate); however, they can feel pressure. CIPA is a type IV of hereditary sensory and autonomic neuropathy (HSAN), known as HSAN IV. A person with CIPA cannot feel pain or differentiate even extreme temperatures. "Anhidrosis" means the body does not sweat, and "congenital" means that the condition is present from birth. The odds of being born with this condition are 1 in 125 million.

You may think a life with no pain is a true paradise. Think twice! A life without pain is a dangerous life, because I cannot feel when I'm seriously injured!

In my whole life, I have been driving from home to hospital constantly, because my parents wanted to be sure I had no injures. Everytime I fell or anything like it, they would drive me to the hospital. Because I cannot sweat, I can easily die from overheating. I will have to check my temperature every day. My parents would even buy ice-bags to make sure I would not get too hot when we were outside in the summer. I have an alarm on my watch(or my cell phone when I'm not in school), because I cannot feel when I have to go to the bathroom(my friends have always thought that was weird).

My everyday life:
Everyday, there are many things I have to check through the day. Eyes, skin, mouth, tongue, gums, joints, feet, hands - I even have to count my teeth! Oh, and don't forget - check my temperature, my bathroom-alarm and make sure I haven't bit my fingers off!

Do you believe a life without pain is paradise? Well, the truth is: It Sucks!