| Just wait...you'll see how much I've grown
up when you get to the bottom of my page!
|Hi! My name is
Sturm, and I'm a normal 10-year-old girl living in a body that doesn't
always behave itself. I'll tell you about that after I tell you the
important things about me, like my having a great family, and, (my mom
tells me), a wonderful personality. I think you'd agree that I'm funny
if we ever got to meet each other. I draw cartoons and put together
books that make people laugh. I kid around a lot, too, and my sister
I make up silly personalities and pretend we are each and every one of
them. I love to play the flute and harp, too, and to listen to
modern and pop music, like Zoegirl and Avril Lavigne. Let's see, what
Oh, I like playing dolls (especiallyAmerican girl dolls), I just love
and as you can see, my favorite color is yellow!
Now I'll tell you about some of my medical problems, OK? To begin with, I've been in the hospital about a billion times, where I receive IVs (meaning liquid and medicine in my veins). I must say that I hate that part of my life, particularly when I have to go home and take the IV with me, right in my arm (to continue receiving antibiotics when my body needs them). You see, I have a medical problem called hypogammaglobulemia, a type of immune deficiency. What that huge word means is that I have no antibodies (fighter cells) to protect me from a bacterial germ called pneumococcus, that is, pardon me, the snotty nose germ that sometimes visits you when you have a cold or the flu. Since I don't have any fighters, I get infections all the time. Pretty soon I'll be starting IVIG, letters that stand for intravenous gammaglobulin (antibodies to help fight infection) I will get this medicine every month to help me stay healthy. Even though the infusion takes a few hours, I think it will be worth it because with it, I should feel a lot better and not get so sick all the time. It feels to me like I have a never going away sinus infection. In addition to this odd immune condition, I also have asthma and trouble with my heart.
All of this is pretty scary. Sometimes I worry that I will get really sick and never get better. When I first found out about why I have skippy heart beats, I cried a lot. It just seemed like so much to put up with. I get frustrated when I'm sick, too, and sometimes I feel guilty. I think I must be a disruption to everyone, even though my mom tells me that I'm not. I even ask myself, 'why me, why me'? My asthma is not fun, but it's not as scary as my heart condition. An asthma attack feels to me like my lungs have been replaced with raisins...ouch! I hate the nebulizer I use to control the asthma, because it shoots out this medicine that makes me feel shaky. When I cough, my mommy says I sound like a seal. And that's about it with my asthma.
What keeps me going is my faith, my family, and my strong will. I live with my mom and my sister Sarah, and thank God they are always there for me. Sarah is 14 months older than I am (that makes her 11), and she worries about me when I'm sick. My mom makes sure I'm always taken care of, and when I'm in the hospital she stays with me during the night. One of the worst things about having my medical problems is that I am sick a lot!!! Believe me, I'd much rather be swimming with Sarah at the YMCA, one of our favorite things to do together.
School is rough for me...though I hardly get to go there anymore. Whenever I've been absent for ten days, I get home instruction (a special teacher comes to my house). This bums me out because when I'm home, I can't see my friends. And I hate missing out on things...I actually love school,even though sometimes bad things happen. For instance, in one of my classes the teacher yelled at me when I interrupted him to tell him I was having heart problems. He yelled at me so hard and told me in front of the class I wasn't really sick. I ran down to the office crying and told the nurse who told the principal who called my mom. She came right away and talked to the principal and the teacher. He apologized to me, but the damage was already done, and I really didn't want to go to school too much after that. My class-mates would tell me that I wasn't really sick, too, and they'd call me 'puppy dog eyes'. I felt so alone, and so bad. I just hated being treated differently! If I were in charge of the school, I would make sure everyone was treated equally. Luckily I'm fairly smart, so I have been able to catch up with all the work,
I have two friends, Jessica and
Jessica is really nice. She has diabetes, so we totally understand each
other. When I needed to begin home instruction, she even cried!!!
is my other friend. We've known each other for a long time, since
I always tell my friends if I'm really sick, because talking with them
makes me feel a little bit better. I hope that I'm able to see them a
next year, and I hope they'll be able to keep me up to date about
happening at school.
Other news is we have a dog Emma. Emma is an angel to all of us. We got her when she was 5 weeks old when my sister Sarah had to have heart surgery. She had supraventricular tachycardia and that was BAD. The docs did a heart catheterization and ablation. Luckily, it saved her life. Sarah's doctors said she is lucky because she could have died from that. I love her bunches.
I am 13 now, don't I look much older?
Now I'm 15, and here I am with my sister and mother
Thanks for taking the time to read my story! Libby
Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468
updated: June 16,2008