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Let's see...where  to begin? Well, if you were to meet me, I think that you'd describe me as dedicated, strong-willed, and victorious...the type of person that no one can say no to. I consider myself a fighter, and someone who rarely ever complains. I love horseback riding, shopping, going to movies, helping people, studying medicine, and reading novels, particularly ones about teens with chronic or life-threatening illness. These types of books help me feel grateful for the health that I do have, and remind me not to
dwell on my sickness and pain. 

My name is Kelly, and I am 19 years old (in 2002, when I wrote this story). At first glance, I probably look like a pretty normal teenager, without many worries in the world. Looks, however, can be deceiving.  I have many medical conditions, and at times I feel quite different from other kids. Cerebral palsy, for starters, and  Raynaud's disease, depression, anxiety, sleep apnea, severe migraines, and adrenaline hypersensitivity. 

I was born too early on a Sunday in August, fact, two months too  early. It was a medical emergency...I needed to be delivered, ready or not. Because I wasn't quite ready, I developed a mild case of cerebral palsy (CP),  a movement disorder that makes it hard for me to write, walk, and maintain posture.  It is even tough for me to sit and stand straight. I guess I'm lucky, though, since  only the right side of my body is affected, unlike most kids with CP. 

I was sick a lot when I was little, and I seemed to catch everything. Then, for awhile, my general health was good. Until 7th grade, that is, when my heart started racing.  I was 13 then, but my heart was working on a very different number...pumping anywhere from 150 to 200 times a minute. As you might imagine, I had to go to the emergency room, and at the time, I thought it was the scariest place I'd ever been to. After what seemed like a trillion tests, I got the word--that I had something called Raynaud's phenomenon. The doctor explained that the circulation of blood to and from my heart wasn't as it should be. Because of this disorder,  I am often cold, and my hands, legs and arms are often discolored. .. from fiery red, to purple, to white.  This  lack of circulation can be quite painful, too, and I have to be very careful when I get hurt.  It is not fun having Raynaud's, but I have learned to live with it, and now I just take it in stride and live my life. I figure that that's a lot better than acting like a martyr! 

I graduated from high school in June. Every year, they ask a student to write a short speech about their perspective of their school years. Well, this year, I just happened to be that student. I wrote a speech about all the challenges, both medical and emotional, that I had to face over the years. It was a hit, and everyone loved it! 

In August, I started my freshman year at Grand Valley State University. That didn't go quite as planned, however, and I had to come back home since I was having major problems adjusting. It is hard for anyone to adjust to college life, and when you have medical problems, it is at least twice as hard. I have always been quite dependent on my mom, both physically and emotionally because of all the challenges that I have faced. So, in the end, we decided it was best for me to come back home and enroll at the local community college for winter term. 

In high school I used to be teased a great deal, so much so that I developed a clinical depression. After years of relentless ridiculing, my body serving as a sponge and absorbing it all, I got physical symptoms; headaches, stomach aches, and even a racing heart. Though I didn't think these problems could be related to anxiety, a ton of tests came back normal, and when medicines for stress helped a bit, I finally believed that there must be a link. You see, it can be very isolating being so sick, and living in a world of hospital visits, surgeries, and diagnostic tests.  I often wish I had a glimpse into the "other side," where people who are not sick spend their time. 

In the summer of 2000, I woke one morning feeling dizzy...I couldn't even stand up, and I had the worst headache ever! This went on for about 6 weeks, the longest, most painful 6 weeks of my life. I had many tests, but none of them revealed any structural abnormalities, so I was referred to a neurologist who diagnosed severe migraines. They still plague me, but at least I have found some medicines to help a bit.

For years, I have had to cope with extreme fatigue, and finally my neurologist saw a connection between my migraines and something called sleep apnea. It seems that the muscles in my throat relax too much during sleep, causing my airway to close and me to stop breathing. In addition to that, my brain forgets to tell my lungs to breathe as I am drifting off to sleep. Now I wear a special mask called a CPAP (continuous positive airway pressure) at night. This mask delivers air so that even if I stop breathing during sleep, air still gets into my lungs through the mask. It is amazing how much energy I have now! 

Although I am usually a happy-go-lucky type person, there are a few things that make me mad. For instance, people treating me like I will break, as if I'm as fragile as glass. And  people talking down to me because they assume I couldn't possibly understand, And probably, most importantly, doctors not being truthful with me. 

Things are better for me now since I've learned to take teasing more in stride.  It was a long, hard struggle, but I am thankfully at the point where I try not to let it bother me. With the help of medicine and wonderful counseling, I am proud to say that I have gotten pretty good at it!   Because of my illness, I have grown close to many people through the Internet with their own  set of medical problems. I have also developed a special relationship with my pediatrician (though I don't go to her anymore, since I'm older). She is the greatest, and has inspired me to go into primary care pediatrics. And that is exactly what I plan to do. 

It's funny, isn't it, that without having been through all of my challenges, I would never have met such great friends? My story would be incomplete without telling you how important my family and good friends have been. My mom, especially, has been there for me through everything I've had to endure. Mom, if you're reading this, I appreciate you more than you could ever know. Thanks!

Sleep apnea
Cerebral Palsy

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: November 16, 2004