oh goodness yes I felt the same way. I am now 19 and still have my monents! I have alwyas been very heavily effected by CF and have had several resistent starnds of psudimonis (sorry I don't remember how to spell that) since I was 3 years old. I grew up with the hospital being a large part of my life, alwyas 2 week stays, and I have never spent more than 4 and a half months strait out of the hospital. eveyone knows I have CF and alwyas has, it isn't so much that I didn't like talking about it, but that I didn't like peoples reaction. at that age when you tell people about it they tend to over react or not care. the hospital can be a very depressing place, for me the third day I am there is always the worst of them all. as much time as I spend there I can't say it gets much easer, but as you get older you learn that is just a fact of you life, you learn how to get other things done while you are there, and to have minimal impact of you life. last time I was in the hosital (last week actually) I had a friend in the hospital, it was her birthday, so the 3 of us about the same age who have known eachoter for a long time, got a cake, we eat it outside because we all have differnt things that we don't want to make eachother sicker with. I spent the weeks leeding to my senior prom in the hospital as well. my mother bought me 9 pairs of shoes, and the nurses all helped me pick the ones that I should wear, mom took the rest back. the point of the stories is that you don't have to miss out on all of life when you are in the hospital, you just have to go about it a little differently. as your son gets older he will learn that and that will make his life a little easer. my advice to you is to expect him to get down, and let that be okay. CF sucks and the people who can except that be suportive and don't spend their life trying to cheer me up when I am upset are the people who are most imortant to me, and the ones I talk to when I need to talk.
best of luck to you and your son
Well i dont know about ne body else but as for me, i hate talking about Cf even tho i know i have, it took me awhile to even accept it after seeing what it did to my sister. i dont want to be treated any differnt than anyone else. i know my own limitaions. i dont care what i have im gonna fight and one day i will beat it. if its the last thing i do i will help find a cure somehow someway. cf isnt gonna get the best of me and as for the people i did tell well where r they now? they left they all ran. like im not scared? everyday i think about it. how long will i live? will i see my sons first date graduation first job? i dont even wanna talk about it cuz when i do people get scared and leave besides i dont like dwelling on things. i love life. but im not moody only when im alone and my sons asleep. does this help any?
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I know EXACTLY how he feels. I'm almost 14 (in about a week) and when i had phsuedamonus I didn't want to take the meds because I couldn't go to New Zealand and would be on them for 6 months. Also I had to take Tobramicine (which is inhaled) and it was FERAL! I eventually got it changed to something that doesn't taste like anything. My parents always lecture me on how I should take better care of myself and to take my meds. But I have trouble remembering when to take them.