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My name is Emily, I am 17 years old, and I've known about my CF since I was 2. I'm probably not a very good story to tell; I mean I've never really had much of a problem with my CF until now. I've always been very healthy and the only time I've ever been in the hospital for it was when I was 2 and they first found out about my CF (though there were 3 close calls last year). Living with it is still hard though; while I'm not sick enough to be hospitalized i pretty much catch everything that goes around, and I am constantly with a cough or something. All of this made my freshman year at high school very difficult for me, and I missed a total of about 80 days last year. P.E wasn't too bad though, I took aerobics and a fitness class and had a deal with the teachers that if I was having a bad day, or week where I couldn't participate, I'd just make it up another way. That helped a lot. It was very hard for me socially, when you're gone all the time, it's hard to keep any kind of friendships because you miss so much; not to mention the whole CF thing really tends to put people off. Now I am homeschooled and doing better.

I love to do outside activities! For the past 5 years I've been volunteering at a horse rescue and retirement; and for about 6 years I have been very involved in horseback riding, camping, backpacking, hiking, kayaking (and all other kinds of boating), spelunking, and even a bit of rock climbing. Even though my CF doesn't run my life, it sure does have a nasty habit of getting in the way sometimes! Doing all the things I love to do can be very hard with CF; when I get sick, it's hard for me to even walk up a flight of stairs without chest pains and wheezing and coughing! It's obnoxious!

Right now, my main form of treatments are the Vest, and the new Saline inhaling thing (absolutely disgusting! but it definitely starts you coughing and bringing stuff up). I have albuterol which I need to use before most physical activity.

Like I said, my CF was always fine, but lately I've been getting sick more often (like now). I do my vest treatment once a day, and the saline one twice. Last summer, I got so incredibly sick once, for 3 weeks when I was in the San Juan Islands, that my doctors would have admitted me were I home. I mean, I couldn't do anything! I was constantly tight chested and wheezing, trying to lay down sent me into caoughing fits, and walking 20 feet had me breathing heavily and more wheezing. It was definitely the most sick I had ever been (not counting the time at 2). I hope not to repeat the experience for quite a while!

I'm sorry, I'm not really sure what kind of stuff you wanted to know. So if you have any more questions, feel free to ask!

Emily     

Academically, I've always been fine I miss quite a bit of school since when I get a cold I can be knocked back for about a week before I can go back to school. Socially I have always been a bit shy and a bit socially anxious, I get nervous when people think theres something wrong with me because I want to be considered normal and not known as "that girl with cf". Of course I got my fair share of teasing over the years, mainly about how skinny and short I was and how wrinkly my hands go after being in the water for only 2 minutes. What really annoys me about school as they make a big deal out of it and feel they have the right to be open with it, I was sitting in P.E this year and I got a new teacher and she just blurted infront of the class asking if I would have any troubles doing pe. I was really angry because that showed no respect for my privacy, because people are like thinking what??

Since I'm only 15 I dont think the opportunity for a real meaningful relationship has really come up, at this age all the guys don't really care because they know they won't have to stick with me forever. Although when I am older I can understand why someone would want to ditch me because of cf, I could get really sick and die young and they would be stuck with that burden of me. People always ask why I dont want to get married or have kids I just say i dont know but really I dont think i would ever get the opportunity too.

Cf has made me very independent and strong, having to deal with major health issues at such a young age and having to take medication has really made me look after myself. And since I have been through a lot more than a lot of people my age I am a lot stronger emotionally than them. I generally don't look to the future because I don't know how much of a future I am going to have. Thinking that I could live to 30 or 40 I have no idea what i want to do with my life after school because I think "whats the point?".

Cf has given me depression, especially recently since I couldnt go to a few parties lately because I was so sick. It's frustrating when you want to do soemthing but you cant because your cf holds you back. I just try to live everyday as happily as possible and try to tell myself that there are people worse off than me.

Living with my CF has definitely affected me socially. I too was always afraid to tell people about myself because I didn't want to scare them away. I'm only 17, but I have had one relationship that I'd consider as serious just because it lasted 4 years, and he was also my best friend the whole time. He knew about my disease, and was fine with it until I actually got really sick last year. During the time I was gone, he kinda just pulled away and I went into a huge depression because after getting sick, it was like all my old friends thought I had some deadly version of the cooties and they pulled away too. It's also hard to tell people because most people hear the "shorter life expectancy" part and get out of there fast! I don't want people to think of me as the girl who could be dead in ten years! Even now, I am just getting over that guy, and another one has been there for me through the whole depression stages I went throught then and am going through now. He knows all about my disease, and was at the camping trip with me in the San Juan's when I got really sick. He also knows about the early death part. I really want to like him in that special way, and I think he does me, but then another part of me always thinks that he's just there because he pity's me. It's just so hard to even see myself in any kind of future relationship (marriage, etc.). My dad once told me that if I came home at 17 with my boyfriend and wanted to get married, he'd say yes because he wants me to be able to experience everything in life. It was rather depressing.

 I used to hate p.e. at school because kids would make fun of me for not being able to do stuff like running a mile. Sometimes it was just too hard and I couldn't do it, so the kids would laugh at me and call me a lazy person who makes up excuses not to run. People still make fun of me for the wrinkly hands and feet after being in the water (I thought that was just me, I didn't know other cfers went through that too). But I still didn't tell them the real reasons; no one wants to be different, and even more so, no one wants others to know that they are different. 

I am a very independent person; I like to do everything on my own and could be perfectly happy living on my own at this point. I don't know if it's my cf that made me this way or not, but I hate help from people, I'm extremely outspoken and I do what I think is right.  I take care of my own meds and treatments and keep track of when to tell my parents to order more meds. At my appointments, I would be perfectly happy to go alone and take care of things myself.  

Academically, it really isn't that bad if you have a good school health plan that gives you extra time to make up all the work you missed. When you miss huge chunks of school at a time is when it gets difficult. I missed a month last year because I got really sick and found out I had diabetes, and I barely pulled out of science last year with a C.   

Umm...that's all I can think of for now, I'll let yoo know if anything else pops up!

Emily

Hello Hayley and welcome to Healing Well!

My youngest child, son Treyson has CF, he is entering adolescence and emotions are changing. 

You are getting a wealth of knowledge and feedback here.  The young women here are an inspiration to life and I think you will get some insightful answers for your assignment.  Good luck!

i also wanted to add that in my previous post i didn't bother to give my email address.  for anyone who wants to chat or ask any questions, it's [email protected]  sorry it's a bit difficult.  hope to hear from some of you soon!  :D deirdre!