Hi! My name's Rhiannon Cypress Marie, and I am 6 years old. I have chronic lung disease. I have something called cystic fibrosis, and it's affected me since I was a tiny baby. It has affected my breathing, and because of it I am often sick.
I was born with this, but the doctors didn't know I had it until they did some tests on me. All they knew was that I was very puny for my size (I wasn't gaining any weight, and yet I ate like a pig; I was ALWAYS hungry!!), and I also was having problems with my breathing. I also had diarrhea all of the time (which was probably why I was so puny in the first place). I was always sick, and I was MISERABLE! When the doctors did their tests on me, it was discovered that I had cystic fibrosis.
Doctors don't really know what causes my problem, but they DO know that people with CF die. It used to be that people with CF died before they turned 5, but more and more people are living long enough to become grownups (although they die sooner than most people). I don't know how long I have to live, but I am not really scared or sad that I am dying. You see, I have Jesus in my heart, and I know because of this I will go to Heaven and become one of God's Angels.
That is a very good thing, to have Jesus in your life because if you don't you'll go to Hell and be with the Devil; and I don't think I have to worry about THAT!
For some strange reason my body makes extra mucus, and this extra mucus clogs my lungs and it makes it hard for me to breathe. I also have problems with my body breaking down enzymes; and this is one reason why I am so skinny and shorter than a lot of my friends at school. I may be 6, but I look more like 3 or 4. I can't gain weight AT all, even though I eat like a little piggy! (At Golden Corral, I can eat TWO plates of food EASY!)
To help keep my lungs clear, I have to take millions of pills each and every day (well, maybe not THAT many, but it IS a bunch! YUCK!!), and I have to have therapy several times a day, where mommy or another nurse who comes to my house pounds on my back, sides, and chest, to help me cough; and this is always good, as it clears my lungs, and I am able to bring up the "nasties" that clog up my lungs. I hate therapy because it's uncomfortable, and besides, I always feel like I'm a DRUM instead of a little kid!! I also wear oxygen a lot of the time because I often have a lot of trouble with my breathing.
I also hate coughing because whenever I cough and I am around people they look at me all weird, and they say I sound like a little old lady. (Now THAT isn't very nice, is it??) But I know I HAVE to do it, or else I could get sick, and I could possibly die sooner. So I do it to keep myself alive as long as possible!
Sometimes the pills or therapy DOESN'T help, and I end up in the hospital with a very bad lung infection. When this happens, I have to have I.V.s and extra oxygen; and I am usually in for a week or two. Sometimes I'll go into the hospital several times in a month, and because of this I often miss a lot of school, and I am always having to do extra work so I can catch up with the kids in my class. It's really a pain! I also have extra therapy, and I don't like it because I HATE being away from mommy and daddy, and I feel so YUCKY!! :( And I HATE having to have my temperature taken or having to take pills when all I want to do is SLEEP!!
Whoever said that hospitals are a place to get extra rest OBVIOUSLY haven't been in one, or else they must have BIRDS in their brains!! Being in the hospital is NOT fun; and I know that, as I HAVE been in the hospital! :(
very good story telling, karen...you tell it so well from the eyes of a child learning to live with a disabling condition...very well researched and told. (((HUGS))) and love, karla. :)
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