A little girl copes with living with cystic fibrosis on a daily basis.
My life isn't easy, but I have learned to put up with it.
My name is Rhiannon Cypress-Marie, and I am going to be eight years old this year. I am in the second grade; I will be in the third grade come September. I live with my family in Nashville, Tennesee, and I am a very happy little girl.
But if you were to see me, you would probably know right away that I am sick. I am skinny and very little for my age. It's because I have a disease called cystic fibrosis (pronounced like sis-stick figh-broh-sis), which is a disease that causes mucus to build up inside my lungs and causes me to have stomach problems, among other things. Because of my disease, I often have trouble with my breathing, and I get short of breath easily. This is why I often have to wear oxygen. I also have problems with diarrhea and stomach upsets; and because of this, I have to take a million pills (well, maybe not THAT many, but it IS a lot!) every day, and I also have to have what I call "thumps". "Thumps" are when my mom or a nurse comes and pounds me on my back, sides, and chest. They have to do this for an hour, three times a day, because my lungs are diseased, and if I don't get rid of this extra mucus, I can get very sick and end up in the hospital. Usually the thumps keep me from going into the hospital as much, but even with the "thumps", this can still happen, and when I DO go into the hospital, I have to have special and powerful medicines given to me so they can help clear out the infection and I can then get better. I get lung infections and pneumonia a lot, and it seems like I go into the hospital at least five or so times a year (and sometimes more than that!).
Because of my CF (this is what I call my disease; it's easier than saying cystic fibrosis), I am shorter and skinnier than a lot of the kids in my class. At the age of seven, I look more like I am three, and I don't weigh more than 29 pounds. I am very skinny, and at times I hate it because my clothes hang on me, and I get so cold so easily, especially if I go swimming or have a bath! Then I have to wrap myself up in a million towels, just so I can warm up, and sit by the heater or fireplace! I also hate it in the summer because I sweat more than most kids, and it's embarrassing when I have to change my clothes because they get soaked from my sweat!
I also have to put up with this cough of mine. My cough is annoying, to say the very least, and when I have to cough, I can't help it. I cough so I can try to clear my lungs, and sometimes I cough so hard and so much I end up throwing up or peeing myself, which is NOT fun. And my cough sounds like that of an old lady, and people get scared or worried whenever they hear me coughing. Or kids will tease me, and that always hurts my feelings.
People don't understand what it is like to live with a problem like mine; but I think I have done pretty good (other than being in the hospital, that is! THAT isn't so good...). I have a very active life; I love to sing, play my fiddle, ride my pony (I have a pony; her name is "Buttercup", and she's a palomino; she's really beautiful!), watch "Berenstein Bears" and "Arthur" after school (once I've done my schoolwork!), draw, read, write, and play with my brothers and sisters. I also love to make jewelry and swim.
I don't know how I got cystic fibrosis, or why, but I guess someone in my family had it and it was passed on to me. None of my other brothers and sisters have it, only me. But I do have a very good CF doctor, and he takes good care of me when I am sick; and I see him every month, so he can see how I am doing. His name is Dr. Martinez. Sometimes if I am sick, he'll stick me in the hospital, but other than that, or his poking me all the time, I like him. My doctor is very nice, and he really cares about me. (I also have my regular doctor, Dr. Emmons, but I only see him when I have my checkup or when I first go into the hospital; usually, I see my CF doctor instead.)
My disease can kill people; many people have died from CF, but with help from medicine and new treatments, a cure may be found. And people with CF are living a lot longer, too; so I may get to live to become an adult! I hope so because I don't want to die; I have a lot of living to do! I am only a kid; I am not supposed to worry about things like dying! I want to grow up and have a family, too, just like my mommy! (I bet I would make a good mommy, too!)
Karen this is so hearbreaking. I commend you for always taking up for the plight of the physically impaired. They don't have enough
recognition, and I believe God has placed this on your heart to do. You do a magnificent job of it. It's something that can be very discouraging, yet you keep battling on,you deserve a big THANK YOU!
Love...Eileen
Reviewed by Kate Clifford
1/30/2004
Another heart touching story. Thumps are no fun. I went through that as a small child. Luckly my lungs got stronger.
continue to educate, enlighten, and write about disabilities--you are a wonder! great story about a heartbreaking disease.
(((HUGS))) and love,
karla. :)
Reviewed by P. Michaels
1/30/2004
Oh, Karen, this is very touching. Thank you for sharing this special story with us. I had a little girl in my class who had this disease. She was a very cute and smart little girl. It really upset me, when I read of her death years later. She died in her twenties.
Karen, how do you know so much about all these diseases and handicaps? Do your work in health care?
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