Hi, everybody! My name is Mysti and I'm 13 years old. I have this problem called Pseudotumor ceribri. You can call it PTC for short if you'd like. Pseudo usually means make believe, but I'll tell you, it doesn't feel make believe to me...my head often hurts really bad, so bad that I have to go to the hospital. 

Once I get there, I have to put up with people trying to  start IVs in my arm about a zillion times. See, the PTC makes all of the water that belongs in my body zoom up to my head. That makes my body pretty dry, and so the veins roll all over the place. Pretty gruesome. A few nurses can get the IVs in at the first try, and you can imagine how happy that makes me. There IS one good thing about IVs, though... when I get dehydrated, the IVs DO make me feel better. 

One of my favorite things is my beanie babies.They keep me company, and I guess that I'm addicted to the little critters! I also like doing things for charity like raffles, and making stuff to send to kids.  I am kinda shy, but I like to make people laugh. If I set my mind to something, I do it. . . 

I don't go to regular school. Last year I was put on homebound because I was absent so much.And I had a fracture in my back and could not carry books. I think school is fun, and I really miss it. When I did go to school, I was in gifted classes and  I loved that! 

I feel that sick kids are teased only because the other kids do not understand. If the disease was explained, I bet they wouldn't tease. Don't be afraid of kids who are sick. Remember that we are the shy ones...at least I am! 

So when you see someone who looks different, like I do (since I have to use Oxygen to help me breathe), just ask whatever questions you have so that you'll be comfortable. Once you're comfortable, I'll  bet you'll want to be friends! 

My best friend has a pseudotumor too. We met in the hospital and the doctors figured  out a few days later that she had the same thing that I do. Isn't that strange? Most people have never heard of PTC...AND she likes beanie babies! 

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 Joan Fleitas, Ed.D, R.N.
        Associate Professor of Nursing, Lehman COllege, CUNY
Bronx, New York, CUNY

  Last updated: November 14, 2004