One thing about CF that still really pisses me off!

[coltsfan715]

Agreed with that SD

<div class="FTQUOTE"><begin quote>While I do agree with proper decisions health wise, i'd rather live to be 45 and have amazing memories and stories of a thoroughly lived life, than live to be 55 and have lived a relatively sterile existance.</end quote></div>

Also like you mentioned everything in moderation. Even the "good" stuff we are supposed to do for our bodies can be harmful if you do to much or take to much of it.

Lindsey

 

[Brad]

I know what You mean Sean.

When I was 15 I started playing in clubs in DC and did so for a number of years.
Now when I go into them or maybe even sit in, I have to keep going out side
to breath,and I can almost never stay very long, compaired to what I did
when I was Younger, smoke and stale beer really get to me now.

I don't drink very often either, I have a beer about 4 or 5 times a year.
Once was a time when I could hang with the best of them. Altough I
never drank till I passed out,but A LOT of my friends did... Funny part
the next day I would tell them awful stories about the things they did.
( most of the time I made it all up, A guys gotta have some fun,,,,,,

anyway I do understand wht You mean Sean, We ALL just want to be
Normal !!!!!!!!!!

 

[Ender]

I agree. in my opinion we aren't living much of a life if ALL we do it worry about our health, our treatments...then we're just being a slave to cf.

I dunno, i really really enjoy going out with friends (hurray for pation season) drinking a beer or 5, and just letting go. I think for me it's more just not worrying, letting myself just live for that moment, and just live. It's hard to just live with cf sometimes. There's always something.

One thing that i also found that gives you that freedom is music, and sports. I'm currently looking into joining some sorta sport to improve my health and find an activity that lets me not think.

i also play guitar, so that helps a lot <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Kiel

 

[JazzysMom]

OH Ender I agree with the Music......it definitely soothes the savge beast. There have been many times I just crank it & go about my business whether its cleaning etc. I cant do it too much with my treatments because I sing so much that I dont get much of the nebs into me. Tho I guess it would work great with the vest.......My daughter tends to join me also! Its a family thing....another hereditary gene! ha ha....a better one of course!

 

[thelizardqueen]

I love music. Whenever I'm cleaning, or on my own - I'll crank my music up super high and just get into it. Same with if I'm at a clud with friends. I competly lose myself in the music.

 

[Scarlett81]

Well Sd I'm happy if you're doing something that makes you happy and lets you meet good friends.
I guess my 4:00 friday Oprah time with my gals is equal to your 'drinking time'. We all need something.

And I was sooooo happy to read that you like your occasional Fruity Girl Drink!!

Is it a Cosmo or a Pina Colada SD?<img src="i/expressions/wine.gif" border="0">

 

[S]

a few of my favorite quotes:

"I feel sorry for people who don't drink. When they wake up in the morning, that's as good as they're going to feel all day." Frank Sinatra, among others

"Sometimes when I reflect back on all the beer I drink I feel ashamed. Then I look into the glass and think about the workers in the brewery and all of their hopes and dreams. If I didn't drink this beer, they might be out of work and their dreams would be shattered. Then I say to myself, "It is better that I drink this beer and let their dreams come true than be selfish and worry about my liver." Jack Handey

"Always do sober what you said you'd do drunk. That will teach you to keep your mouth shut." Ernest Hemingway

 

[Faust]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

Well Sd I'm happy if you're doing something that makes you happy and lets you meet good friends.

I guess my 4:00 friday Oprah time with my gals is equal to your 'drinking time'. We all need something.



And I was sooooo happy to read that you like your occasional Fruity Girl Drink!!



Is it a Cosmo or a Pina Colada SD?<img src=""></end quote></div>

Nah i've had cosmo's before, didn't really care for them. If i'm in the mood for a fruity chicky drink, I like stuff like sex on the beach, fuzzy navels, amaretto sours, etc etc. I figure if i'm gonna "gay out" i'm gonna fully "gay out" heh.

But my normal drinking on the weekend just consists of really enjoying several HUGE, ice cold, quality beers. Then I use the weekdays to abstain and let my body heal up some. And I agree S, those quotes are awesome.

I personally think that human beings collectively need outlets to fully enjoy their social time. Some people with addictive personalities that have learned they can't enjoy alcohol anymore or have a real problem with it when they do use it, turn to Jesus or whatever, and use that as an addiction to make themselves feel good. Others go nutty with extreme sports and adrenaline junkies, others go crazy with body building and stuff, others go crazy with health food stuff, others go crazy with sex and are total whacko sex addict pervs, and some turn to drugs...

I personally feel do whatever you want as long as you aren't hurting others, and is atleast somewhat responsible. I personally unwind and laugh and enjoy my time with friends over beers on weekends. If I was single again i'd probably eventually be a manwhore as well like I used to be, but i'm not single, so I can just admire the menu and not eat while I drink <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[littledebbie]

Usually when something bugs me I try to leave it and sort of count
to 10 before I reply, but this time....nope.<br>
<br>
Back off.  Life is short, we gotta get our living
on.  Sean is obviously taking really good care of himself
what's the point in doing all those treatments etc. if were not
going to get in the game and enjoy things once in a while.  If
that means a night with the boys and a few beers, well more power
to him.  Cheers to you SD.  He obviously doesn't need
anyone to come to his defense as he usually slices and dices any
topic he engages is, but I hate it when I see this happen to anyone
or myself.  I don't think anyone comes here to get
"preached" at.  Some times I think we write things
more because they make us feel good about ourselves than because
they are really of use to anyone else, I'm not saying I'm probably
not guilty of it from time to time, but it is not cute.<br>
<img src="i/expressions/beer.gif" border="0">  <img src="i/expressions/beer.gif" border="0">  <img src="i/expressions/beer.gif" border="0">  <img src="i/expressions/beer.gif" border="0">  <img src="i/expressions/beer.gif" border="0">
 <img src="i/expressions/beer.gif" border="0">  <img src="i/expressions/beer.gif" border="0">  <img src="i/expressions/beer.gif" border="0">  <img src="i/expressions/beer.gif" border="0">  <img src="i/expressions/beer.gif" border="0">
 <img src="i/expressions/beer.gif" border="0">  <img src="i/expressions/beer.gif" border="0">  <img src="i/expressions/beer.gif" border="0"><br>
<br>
Back to the point of the thread, SD it does blow.  I admire
your commitment.  I, like others have mentioned, do my
treatments before getting involved in drunken debauchery <img src="i/expressions/devil.gif" border="0">.
But on the whole I get really sick of doing the up keep and I'm not
anywhere near as good about it as you are.  You are like the
poster child of good care I think, sometime's I'm not sure you're
for real, are you a plant?  Are you like a CF Dr.'s imaginary
patient lurking in the forum in hopes that your good habits will
rub off, or a few pounds at least.  Probably not, I might have
doubts but having read your booty blow out thread I guess you must
be authentic.  Anyway, i feel your frustration it does suck
and the kids in somalia would understand I'm sure because sometimes
we just all want to take a day off from our life.  

 

[Faust]

Heh nah i'm real Debbie. I just like to feel and look good, and be proactive about my health in general. About the only "bad" thing that I do is some social beers on friday or sat night and get a good buzz and laugh a ton. Other than that, I lift weights monday, wednesday, and friday concentrating on my upper body (chest, bicep, tricep, lats, deltoids, etc etc), and I usually brisk walk/jog around our block (once around is a third of a mile) 3-6 times a night every night except weekends. Aside from that, though I don't have the perfect diet, I don't do all out dumb crap like eat tons of big macs all the time. About the only thing that I could probably do more is my vest. Now I do it 2 or 3 times a week, almost always at night before bed.

The reason why I don't use my vest that much (though even when i'm crystal clear I feel better after using it), is because if I don't feel bad/congested it's hard for me to motivate to use it. I also take a ton of supplements to help with my overall health (too many to list). So I guess i'm doing ok. I don't want to live to see 90, but I wouldn't mind good health to apply to a career for maybe another 20 years or so.


BTW I expect other CF's to get on my beanbag about drinking, because it's bad for them, and some of them can't do it anymore due to health reasons, and I understand that.

 

[65rosessamurai]

I used to be able to handle the smokey clubs, but that was in my 20's. Maybe cause I had so much family smoking around me, I was used to the atmosphere (so to say).
But, depending on the music, it may soothe the savage beast, or LET IT OUT!!
(Heavy Metal vs. Maria Carey, for example!!)
But, back the SD issue, I'd say once in a while, F#### It! Revert back to the rebelious days for a night, and don't do treatments, just add a little extra the next day. (Though Allie's idea sounds good, too)
Then again, the most rebellion I've done was not take my enzymes before eating Pizza--boy, did I pay for that one!!
Drinking Red Wine, supposedly has chemicals in it to prevent cancer. Beer, I'm not sure, but thought it helped the liver when taken once in a while. As for me, I can't handle alcohol due to my liver. I have an occasional "drink", but wasn't much of a drinker when I really could drink!

 

[Faust]

I avoid all smokey places. I don't play that game anymore. There are many bars/pubs now that are smoke free, thank god.

 

[CowTown]

I haven't read all these posts yet, but thought I'd drop a note too.

Today is an example of me being lazy! I've been really good all week about all my treatments, and today is something different. I haven't done my breathing or vest yet, all day! Thta's bad, and I maybe by reading this post I will actually finsish the night by doing it. I agree though, I get so tired of keeping up sometimes, even when I know I need to. Endulging is deffinitely a part of life. I used to be able to handle more and recover quickly the next day, but not as much anymore. I also don't have the urge as often anymore to indulg the way I used to. I realized when I was like 13-19 that I wanted to experience life before I died, so I did. Now I feel I have gotten so much out of my system, and that's a really nice feeling too.

It's wonderful being able to go out and not be in smokey places. I'm always amazed when we go to a restaurant in Reno, Nevada where smoking is allowed everywhere, and there are non-smoking and smoking areas in restaurants. They could sit you in the non-smoking section while being literally 2 tables away from the smoking section! Incredibly stupid.

 

[shauna]

seandavis i agree with you totally....i love going out and a having a (fair few) drinks! i was actually thinking about this the other day, how it would be great to go out drink as much as i possibly could without passing out and then go home and....pass out!! without having to do anything else before it!

when i had just turned 18 and was actually legal to go out drinking i would be out every friday saturday even sunday night and never do my treatments when i get home and i suffered for it! now i know if i do everything right i'll feel better in the morning but i'm with you- it sucks!!!

and dont apologise for complaining about it- its your complaint and its totally valid!! (mainly because i agree, i need to justify it i think!)

 

[sportster]

i agree with sean. i'm on a pool league and i play on a horseshoe
league and i have my fill of beer and have a blast!  i'm
not as good as most of  you at doing all my meds. but i'm
getting better at that.  i might get run over by a car
tomorrow instead of cf killing me. i'm just trying to live my life
and some fun along the way.  <br>
<br>

 

[Ricky123]

sean mate i know exactly what ya going through cos i have experienced just the frustrations you have described and the way i deal with it (well in the last 2 months) is i give myself a day off treatments once a week this includes all nebulisers physio etc so iam totally compliant 6 days a week but the friday or saturday when all my mates are going out i dont bother yes my health will suffer slightly in the long term but iam not bothered so what if i dont live a extra 5 or 6 years i rather experience some normal life while iam here and the thing is i feel a lot better phychologically since i skip treatment once a week i relax more with my mates and can actually enjoy their company a lot more knowing for one day at least i dont have to worry about bloude medicines

life is about quality not quantity

 

[Ricky123]

sean mate i know exactly what ya going through cos i have experienced just the frustrations you have described and the way i deal with it (well in the last 2 months) is i give myself a day off treatments once a week this includes all nebulisers physio etc so iam totally compliant 6 days a week but the friday or saturday when all my mates are going out i dont bother yes my health will suffer slightly in the long term but iam not bothered so what if i dont live a extra 5 or 6 years i rather experience some normal life while iam here and the thing is i feel a lot better phychologically since i skip treatment once a week i relax more with my mates and can actually enjoy their company a lot more knowing for one day at least i dont have to worry about bloude medicines

life is about quality not quantity

 

[Ricky123]

sean mate i know exactly what ya going through cos i have experienced just the frustrations you have described and the way i deal with it (well in the last 2 months) is i give myself a day off treatments once a week this includes all nebulisers physio etc so iam totally compliant 6 days a week but the friday or saturday when all my mates are going out i dont bother yes my health will suffer slightly in the long term but iam not bothered so what if i dont live a extra 5 or 6 years i rather experience some normal life while iam here and the thing is i feel a lot better phychologically since i skip treatment once a week i relax more with my mates and can actually enjoy their company a lot more knowing for one day at least i dont have to worry about bloude medicines

life is about quality not quantity

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

sean mate i know exactly what ya going through cos i have experienced just the frustrations you have described and the way i deal with it (well in the last 2 months) is i give myself a day off treatments once a week this includes all nebulisers physio etc so iam totally compliant 6 days a week but the friday or saturday when all my mates are going out i dont bother yes my health will suffer slightly in the long term but iam not bothered so what if i dont live a extra 5 or 6 years i rather experience some normal life while iam here and the thing is i feel a lot better phychologically since i skip treatment once a week i relax more with my mates and can actually enjoy their company a lot more knowing for one day at least i dont have to worry about bloude medicines

life is about quality not quantity</end quote></div>


I understand you dont consume yourself with the worry of long term affects, but do you have short term affects? I no longer can get thru the day easily if I skip both treatments. I have to have a minimum of one otherwise I cant breath. So although in my heart I love the concept of quality versus quantity, there is a balance for me. Having the extra time to play because I dont do all my treatments doesnt mean anything if I am not 100% thus the quality isnt there. So a balance is always nice!

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ricky123</b></i>

sean mate i know exactly what ya going through cos i have experienced just the frustrations you have described and the way i deal with it (well in the last 2 months) is i give myself a day off treatments once a week this includes all nebulisers physio etc so iam totally compliant 6 days a week but the friday or saturday when all my mates are going out i dont bother yes my health will suffer slightly in the long term but iam not bothered so what if i dont live a extra 5 or 6 years i rather experience some normal life while iam here and the thing is i feel a lot better phychologically since i skip treatment once a week i relax more with my mates and can actually enjoy their company a lot more knowing for one day at least i dont have to worry about bloude medicines

life is about quality not quantity</end quote></div>


I understand you dont consume yourself with the worry of long term affects, but do you have short term affects? I no longer can get thru the day easily if I skip both treatments. I have to have a minimum of one otherwise I cant breath. So although in my heart I love the concept of quality versus quantity, there is a balance for me. Having the extra time to play because I dont do all my treatments doesnt mean anything if I am not 100% thus the quality isnt there. So a balance is always nice!