What do I do if somebody asks me random questions like, "Why can't you do this?" or "Why can't you run like the other kids?"

When I get frustrated by a lot questions, I handle it by breathing deeply and telling them I have PH. Or I say I just say I have a disease so that's why I can't go to gym.

Before I got diagnosed I used to like running around, skipping, gym class, having fun. But when I got diagnosed I had to stop going to gym class, which besides art was my favorite class.

People who think people with diseases can't do very much are weird. A person with a disease can do anything they can or want to do. Just maybe a little differently. They just want to be treated like a normal person.

Had enough of questions about having a disease? If you have a chronic disease how do you explain it? What do you think about people who continually ask questions? Do you ever get annoyed, angry or frustrated? What do YOU do? Do you believe you can do just about anything you want?

Why's my backpack called Halo? You know how angels wear halos over their heads? That's what I named my backpack. I call it that because I have to wear it 24 hours a day, seven days a week and it's a medicine that saved my life and makes me feel just like a normal kid.  

I have to wear a special pump attached to an IV (intravenous) line which sends medication to my body at all times. The pump is always attached to me and the line never comes out so I can never forget it. The medicine in the pump is Flolan, but I also take Revatio, Nifedipine and Coumadin. My parents say the medication helps reduce the blood pressure in my lungs and thins my blood (so a clot doesn't form). I wear the medication in my backpack and I have many different bags which are cool (I even have a Coach bag). When people ask me about my bag, I tell them I have a heart disease and that's why I have this "pumpy" thing.

The pump I have now sometimes gets in the way during karate class; it's kind of clunky.  But I feel normal wearing it because I've been wearing it since first grade. When we pull out the IV line to put in a brand new one in, it does hurt. My mom has to change the dressing every other day, so every other day I get a shower.

Before, "Halo" used to be the size of a large backpack, but now I'm hoping to get a new one which is the size of a cell phone. I'm hoping my Cardiologist will clear me for it before I go to high school. I feel a little scared because I don't know if it will work for me.

Have to wear or use something special (like an arm, neck or back brace or wheelchair) because of your disease or are you always taking some medication? What?s it like for YOU? Do you like/dislike having to use it? What do your friends or other people say about it?