Hi everyone! I'm a 20 year old female who has lived with CF since I was born. I've got some serious issues though. When I was younger I used to flick my pills under the refridgerator because I couldn't swallow them. I became lactose intolerant until I had surgery and it went away. I was anerexic once even though I didn't need to be. As we all know CF patients are always on the low end of the weight pole but I didn't like the way I looked. I suffer from serious depression, not only because of the CF, but everything I've had to go through in my life. I became diabetic at age 14 because of my pancrease breaking down. Then when I started high school I started smoking pot. Real smart right! Now I'm 20 years old, been out of high school for two years now, but I still can't seem to get myself on the right track! I always take my enzymes, but as for anyother medicine I'm supposed to take, it doesn't happen! It's such a pain in the butt! I do eat again, though it's hard as heck to gain any weight! But I unfortuanately still do drugs! Right now I'm getting a cold so I'm trying to quit, but the second I start to feel better, I'll be back to smoking again! Today was a particularly rough day in the means of doing away with myself. I'm pretty suicidal. I have a bad outlook on life as well. I live everyday wondering what I'm here for. Why I have to go through with all this crap. I don't want to have kids because I don't want them to resent me someday for passing this disease on to them. I just want to be happy. Is there anyone out there living with CF who feels the sameway I do, or is everyone a good patient who does what they're supposed to and takes care of themselves religiously?
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Living in denial
- Thread starter anonymous
- Start date
time to grow up, don't let cf be your identity. you're a 20 year old woman, with experiences, hopes,..ask yourself, who do you love and who loves you. You don't come in a cf box, with a cf wrapper and a cf stamp on your head..cf is only a part of you...there's music you like and some that just sucks, i'm sure you have laughed before, ....and why....think of what made you laugh....,ever feel snow falling?, hear the ocean?, been embarrassed?,won something?....that's why you're here....to ride that one wave...i can't lecture you about smoking weed and drugs, and not doing all your treatments....you seem to understand what that means to your health....but i think you can step back and look at yourself and see who's there...you haven't seen her in a while...i think you miss her.
That could have been me, last year, if <b>(1)</b> I had easy access to drugs in this neighborhood, and (2) wasn't actually too much of a coward to try them. Luckily, the one time I smoked a cig--at 12--I coughed so hard that I decided never to try anything like that again, so... I've defended smokers' rights at length in debate, however, so I won't lecture you about it, either. All in all, those treatments and pills are such a hassle, I'm surprised any of us do them at all. Eventually, of course, the realization hits that we could have had much better health if we stuck to them, but at the same time, "who cares?" <i>Why</i> do those things, when--if you're not enjoying life--they're just prolonging the inevitable, and letting you lead what is better described as an ambiguous type of existence? (Sound familiar?)
I really don't know what to suggest. I got extremely fortunate, and found someone who made life worth living again. Without her, I really wouldn't care. There's no guarantee such a stroke of luck will happen in anyone else's case. There's no guarantee of a happy ending, just because you go for it. Life can truly bitchslap people, and there won't necessarily be any rhyme or reason to it. It reassures me that you still <i>want</i> to be happy; the disillusionment CF can create hasn't fully gripped you yet. Is there anything you enjoy doing enough to justify putting up with the rest of this crap? A hobby, friends...?
If you don't mind me being blunt, what is your prognosis, if any? How high are your PFTs? Do you believe you should plan for college, a job, a reasonably decent life for years more... or does it seem more probable you're in the end stages (which probably changes some dynamics and priorities)? Is getting listed for a lung transplant an option for you, or medically unlikely/you don't want to go through with it? You may want to ask yourself (and maybe your docs) some tough questions about what you'd <i>like to be doing</i> in a year or two, what is <i>likely to happen</i> in a year or two, what is likely to happen in a year or two <i>if you change what you're doing</i>, and (only you'll know this) whether you can handle that, or want to.
Wish you all the best, not that it'll change much. For whatever it's worth, you're not alone.
I really don't know what to suggest. I got extremely fortunate, and found someone who made life worth living again. Without her, I really wouldn't care. There's no guarantee such a stroke of luck will happen in anyone else's case. There's no guarantee of a happy ending, just because you go for it. Life can truly bitchslap people, and there won't necessarily be any rhyme or reason to it. It reassures me that you still <i>want</i> to be happy; the disillusionment CF can create hasn't fully gripped you yet. Is there anything you enjoy doing enough to justify putting up with the rest of this crap? A hobby, friends...?
If you don't mind me being blunt, what is your prognosis, if any? How high are your PFTs? Do you believe you should plan for college, a job, a reasonably decent life for years more... or does it seem more probable you're in the end stages (which probably changes some dynamics and priorities)? Is getting listed for a lung transplant an option for you, or medically unlikely/you don't want to go through with it? You may want to ask yourself (and maybe your docs) some tough questions about what you'd <i>like to be doing</i> in a year or two, what is <i>likely to happen</i> in a year or two, what is likely to happen in a year or two <i>if you change what you're doing</i>, and (only you'll know this) whether you can handle that, or want to.
Wish you all the best, not that it'll change much. For whatever it's worth, you're not alone.
Thing is i think you owe it to this girl to tell her so she can get her head round the fact that children may not be on the cards and that she may have to deal with your death sooner than most girlfriends (something she cannot control).
i was at a wedding this year of a person with CF who met and fell for her man 6 years perviously. She kept playing down CF like it was a nasty cough. went to the bathroom before and after meals, obviously to take tablets etc... that is how she delt with it and its not for me to judge as a non cf person i cannot comprehend it, i know that. But the groom in question needed to talk from time to time to a nurse in the family who really helped him get his head round the whole situation, like i mean you are expecting this girl to just say ok i'll be by your side - if it were me i would need some time to let it sink in. The fact is CF or no CF you can't make someone love you but if you are open and straight with the girl you have a good chance as any. people have hopes and dreams that take years to form and need a few days AT LEAST to read just to ie if i ook up with xxx backpacking in rural aisa is probably not on the cards - but do i really want that as bad as i want him?
Just be fair to her.
i was at a wedding this year of a person with CF who met and fell for her man 6 years perviously. She kept playing down CF like it was a nasty cough. went to the bathroom before and after meals, obviously to take tablets etc... that is how she delt with it and its not for me to judge as a non cf person i cannot comprehend it, i know that. But the groom in question needed to talk from time to time to a nurse in the family who really helped him get his head round the whole situation, like i mean you are expecting this girl to just say ok i'll be by your side - if it were me i would need some time to let it sink in. The fact is CF or no CF you can't make someone love you but if you are open and straight with the girl you have a good chance as any. people have hopes and dreams that take years to form and need a few days AT LEAST to read just to ie if i ook up with xxx backpacking in rural aisa is probably not on the cards - but do i really want that as bad as i want him?
Just be fair to her.
i get very resentful too! it is hard! i have had many issues come up where i have to be on lots of meds, and after a while it gets old. always having to go to the dr. or taking pills, or not being able to drink because of antibiotics. i have gotten very depressed several times. and i have run to things outside myself to feel better, but i don't want to live with all that crap. i wish things could be easier, but life is what it is. i am luckier than most of the people in this world as far as freedoms and access to help. i can't dwell on the negative or it'll kill me, or make my life a living hell. keep your chin up, it is a pain in the a-s, but who knows, one day they might find a cure, and we need to be here if they do!
samantha
sahein22@yahoo.com
samantha
sahein22@yahoo.com
snickers1228
New member
hey i am a 21 year old female and i went through the same situation u r going through..i was around 16 and i started to smoke weed i did it hear and ther and then it bacame a habit and i started doing it all the time......then i got into the most horrible drugs ever..coke and herion(snorting not enjection) i did this to try and forget about the cf.. i didn't want to believe that i had it ne more and i also thought way am i here... i hated to being sick and being high made me forget about it...but ne ways i eventually stop smokin and doin the herion and coke its been 3 years of being clean of them drugs and u know what i feel so much better.now i will admit i do use sometimes but i am tryin. i do coke hear and ther,not like i use to .its going to be hard to get off the drug all at once but take it one day at time.and u will do it..i have a wonderful husband at the time boyfriend that help me through the rough times...i also wasn't regular on my treatments that i was suppose to do..but i notice the less treatments i do the worse i feel and the more i do the better i feel, and u know what i like feelin better...so if u ever need to talk u can talk to me i have no problem i think me and u have alot in common....you can do it dont worry..hope i made a little sence to u...your not the only one
snickers1228
New member
here is my email address please email so we can talk....sweetgrl_2luv@yahoo.com