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NursingStudent
New Member


Date Joined Mar 2007
Total Posts : 4
   Posted 3/7/2007 10:52 PM (GMT -7)   
 
  Hello Everybody,
 
I would just like to take this time to introduce myself - My name is Hayley. And as you may be able to tell (by my display name) i am a nursing student. I am currently writing an assigment on Teens with CF, my belief is that the only way you can fully understand something is to speak to people who are directly affected - i could read for days in text books, but i like to get to know the person behind it all.
 
my main reason for posting is hopefully there are some teenage girls who acsess this sight that would be able to take the time to speak with me. if you dont want to 'post' a reply my email is hey_lee27@hotmail.com and i am happy to get your emails.
 
i look forward to getting to know some of you, and hearing your stories.
 
Thank you very much for taking the time to read my post
 
Kind Regards
-Hayley :-)
8-3-07 

NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 3/8/2007 11:00 PM (GMT -7)   
Hello Hayley!
 
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     
We are the ones, we get knocked down; we get back up and stand above the crowd. We are one.

Emily!



 


NursingStudent
New Member


Date Joined Mar 2007
Total Posts : 4
   Posted 3/9/2007 4:29 AM (GMT -7)   

thanks emily, was good to hear from you.

with your CF do you find it hard for you to tell people about it? and if you do why you think the main resons are? basicaly im lookinf for how it affects you in these areas (listed below)               any feed back is welcome

- your competency : socialy,physicaly, academicaly, and work related.

- your capacity to have meaningful relationships

- independance

- identity

- purpose and fulfilment

- integrity

- acceptance of the world

i know they sound like big  things, but basicaly im just wondering if you feel that your CF effects you socialy, in your relationships,your independance,how you see your self,your values etc

if you get what i mean.

i am sorry to pry, but i don want to understand the way it effects people. Weather it only be in a small way or in a larger way.

Thankyou so much Emily.

P.S - others feel free to post :D

 


Audz
Regular Member


Date Joined Oct 2006
Total Posts : 24
   Posted 3/9/2007 6:42 AM (GMT -7)   
For me, cf hasn't really affected me that greatly, I've only been hospitallised 3 times but lately I have been noticing how different I am from other people.
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.

NursingStudent
New Member


Date Joined Mar 2007
Total Posts : 4
   Posted 3/9/2007 9:14 PM (GMT -7)   
thankyou so much for your reply..
 
You sound like a really strong girl. Just keep going
I understand it must be hard for you to look into your future but it may help you with your depression - have something that you want to achieve in your life. I do understand that it is hard to do - i have suffered an ilness too and when i got around my depression i decided that i wanted to be nurse to help others. and yeah when i was focusing on that my depression slowely faded. im not saying i still dont get depressed , but when you have something to aim for your chances of happiness are much stronger. dont be scared I think that you can become something and make something of your life ....
 
sorry for the psych speel..
 
thankyou so much for your time Audz
 
and if you ever need someone to talk things over with ill be happy to listen.
 
 
 
 
 

Thankful For Your Help!


NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 3/9/2007 11:18 PM (GMT -7)   
Okay, now that  actually know what you're looking for, I will post again.
 
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
We are the ones, we get knocked down; we get back up and stand above the crowd. We are one.

Emily!



 


NursingStudent
New Member


Date Joined Mar 2007
Total Posts : 4
   Posted 3/10/2007 1:14 AM (GMT -7)   
thankyou so much emily. it is really helping me understand how you actually feel - all the text books are great to read but they never tell you how the person is effected.
 
thankyou for taking the time to chat with me
 
maybe i will speak to you soon
 
take care :-)

Thankful For Your Help!


imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 3/10/2007 11:43 AM (GMT -7)   

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!



Sandra
 
"Measure your life by loss not gain, not by the wine drunk but by the wine poured, for love's strength stands in love's sacrifice and he who suffers most has much to give" -Goforth
 
 
Cystic Fibrosis Co-Mod


diddles
Regular Member


Date Joined Mar 2007
Total Posts : 35
   Posted 4/3/2007 1:26 AM (GMT -7)   

Dear Hayley,

Hello, my name is Deirdre.  I'm 18 - about to turn 19 in just a few short weeks!  I'm a freshman in college, and about to finish my first year! woo hoo!! anyhow,  I was only diagnosed with cf the summer of my junior year in high school.  It was pretty insane, and I think the only reason I got through is because I was in a sort of denial about it all, and I mean, I'm only just getting over this denial now.  I was always sick in one way or another growing up, and since the first grade I was living with what my doctors thought was just asthma and allergies.  Anyway, i went in for a sinus surgery and my docs decided to give me a sweat test, and that's how I came to be diagnosed.  I am fortunate enough to say, at least, that i only have a mild case of cf.  It's so weird to me because it feels like such an insignificant part of my life.  I mean to say, I'm relatively healthy (although there's always room for improvement) and I never miss much school at all, and I am able to have an active social life.  When I think about it , it's just so strange to consider that all the things I have ever dreamed of may not quite come true simply because I've got this sort of expiration date, I guess you could say.  I do want to get married and have children and have a successful career, and I am going to try for it to the best of my ability, but i'm sure you can imagine the shock of realizing that things just may not work as I had always hoped simply because I was born with this thing called cf.  I must say that it is quite intimidating to think that people might not be willing to form relationships with me because my illness might make them uncomfortable, but we've all got to face some sort of rejection at one point or another.  Of course, I have to admit that as I come to terms with cf and am beginning to accept it as a part of my life, it is the reaction and judgement from other people that makes me hesitant to explain what I've got.  So, I just avoid the topic if I can help it.  I know that I have this chronic cough that can sometimes get pretty nasty, but otherwise, I feel that there is no reason for anyone to have suspicion of something being "wrong" with me.  So, I'm taking things pretty well right now.  The most absolutely terrifying thing to me at this point, however, is how I might very well die a young and possibly painful death (perhaps i'm being a bit dramatic, haha).  Anyway, I feel like I'm rambling a bit, and I may or may not be making the most sense at this point (it is really late right now, too), so feel free to email me any questions if you'd like more specific answers to your questions.  Otherwise...maybe I'll post some after thoughts later.  Okay.  Good night!

Seven days without laughter make one weak.


diddles
Regular Member


Date Joined Mar 2007
Total Posts : 35
   Posted 4/11/2007 11:57 PM (GMT -7)   
hello vera! i was sixteen when i was diagnosed.  i would really like to know why it took so long for me to be diagnosed, as well.  i wish i could say it was because i have such a mild case, but in the weeks after being diagnosed all i heard from doctors and nurses and everyone else along the way is that i so obviously looked like i had cf; like i had a lot of the more obvious physical features of most cf patients (i guess that means my small size and some clubbing of my index fingers. not entirely sure).  anywho, i guess i'd just been living misdiagnosed.  bad doctors, perhaps.  well, obviously they were terrible. until now.  hm... well, i hope all is well with your grandaughther.  she sounds like an absolute joy! 
 
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 dd_is_me41888@yahoo.com  sorry it's a bit difficult.  hope to hear from some of you soon!  :D deirdre! 
 
 

lil miss
New Member


Date Joined Apr 2007
Total Posts : 11
   Posted 5/5/2007 4:44 AM (GMT -7)   
Hi Hayley, i myself have not got CF, but my niece who is coming up ti the age of 3 has.
My niece was diagnosed with it when she was a few months old. They think shes only going to live till her late 20s. you see her CF is so bad that just b4 xmas she was fitted with a portacaff, because having to give her ivs all the time destroying her veins. APPARENTLY SHES THE YOUNGEST CHILD TO HAVE A PORTACAFF FITTED. The poor girl gets really affected because of her CF she constantly has to be watched and cant do the same things as kids her age. She cant go out at playtime if its cold she cant always do the same sports in pe as her friends. Shes on so much medication but shes really good with it shes always reminding her mummy to give her it. I think she goes into hospital twice a month for that thing cant remember wat they call it wen they pat her on the bk to get all yhe flem and stuff of her lungs.
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