where are the HIP diseased folks.

[notacrook]

hi.
this is my first time posting, and i dont want to offend anyone here, but sometimes when i read CF message boards, i find myself dying for a more realistic view of this disease in a normal functioning society.... sometimes i feel like the responses are from people trapped in a bubble or a time-warp..

are there people out there who are adults, have cf, maybe don't believe in god (so the standard "you're in our prayers" jive makes you roll your eyes), function in the normal world of pop culture today, use the word f**'k (im sure that will be blocked out or something), love to check out music and bars, who smoke pot (dont even start about smoking and cf.. im not talking 343 times a day), own an ipod, like to drink expensive tequila, get so frustrated at the lack of attention paid to the mental health aspect of this disease, can name the first three albums by the clash, read david sedaris, love wes anderson or woody allen, own at least one pair of pumas, know who trey anastasio is.. blah blah blah.. where are these people..

desperately searching for a hip bunch of diseased folks who don't want to get together for little support groups, but could simply nod their hat towards the fact that they ARE out there..

im confused but i feel like i am not alone.

make sense?
if you get it, you'll totally understand what i'm talking about here.

again, i really dont mean to offend. i'm just feeling so frustrated and feel like i am trapped in some really bad movie with mother's of children w/ CF who wear sweatshirts with kittens on them or something.

please tell me i am not alone.

 

[kybert]

if you open up your eyes a bit you will realise that there are plenty of folks on here who are 'hip' or however you want to put it.

 

[WinAce]

<blockquote>Quote<br><hr><i>Originally posted by: <b>notacrook</b></i><br>hi<hr></blockquote>

Greetings.

<blockquote>Quote<br><hr>are there people out there who are adults, have cf, maybe don't believe in god (so the standard "you're in our prayers" jive makes you roll your eyes)<hr></blockquote>

Yep. <img src="i/expressions/face-icon-small-smile.gif" border="0">

<blockquote>Quote<br><hr>function in the normal world of pop culture today, use the word f**'k (im sure that will be blocked out or something), love to check out music and bars,<hr></blockquote>

Yep.

<blockquote>Quote<br><hr>who smoke pot (dont even start about smoking and cf.. im not talking 343 times a day)<hr></blockquote>

One can eat pot, so the smoking issue need not be prohibitive.

<blockquote>Quote<br><hr>own an ipod<hr></blockquote>

I have one, yes.

Your rant seems very familiar. For a long time, I didn't join any CF support groups because they seemed to focus "too much" on illness, as opposed to the good things in life. (Of course, when a CFer writes only about the good things in life, he'll be indistinguishable from someone without it.) One of my main pet peeves is how, on forums of this nature, people will sign their names (on every post) with acronyms standing for what specific complications (or germs) they have. I find this somewhat bizarre, in effect, defining oneself by one's bugs, so I am strongly against it.

 

[anonymous]

Haha. Believe me. I totally understand. It's funny to meet people at my clinic who are like... You work?! Haha.

Umm... Self titled, Give 'em Enough Rope and London Calling, I think.

I can't believe you like Trey Anastasio. Gross.

Other than that I think I like you.

Email me. mcuplin@gmail.com

Melanie
22 CF CFRD
aka rotandroll

 

[NoDayButToday]

We're right here.

Have you seen the MANNNY 'hip' posters on here? Did you look through very carefully at all. There are tons of people who would understand a subtle pop culture reference. Because this is a CF board, discussions of pop culture don't come up often, but we DO go to movies and live lvies outside of having CF. I love David Sedaris, my iPod is full of music, I am in fact a Clash fan, The Royal Tenenbaums is one of my favorite movies. And I own <b>3</b> pairs of Puma, so touche.

If you don't want a support group, then perhaps don't come onto one and insult it. But just to let you know, we are in fact HIP people on here who have lives outside of CF.

 

[notacrook]

i dont doubt the hipsters hang around.. im not saying a dont want a support group - i think i do - maybe not in person, but that's why i finally decided to post.. dont mean to insult that aspect of it.. im just in an extremely frustrated point.. or something.. i have not seen the many hip posts, but i also get so fed up that i dont always read the boards too too intently.. i'd like to start tho, cause im sure there are many folks dealing with the same sh*t. i do appreciate these responses tho..... really.. it's interesting..

re: trey.. ha, too funny..

 

[kybert]

im hip, i think. but i dont do pot, i dont own an ipod [too expensive], i dont care about the clash so i dont know any of their albums, i dont know who david sedaris is [you mentioned read, i hate reading], i dont love wes anderson or woody allen, i dont care about puma although i own a pair [i prefer reebok or converse] and i dont know who trey anastasio is.

maybe you should just go to the off topic forum? you might find the posts you want to see there. or you could start your own and ask everyone what they like etc.

 

[jenhum]

I agree, there are definitely some "hip" people on this board. I'm pretty straight-laced, so I may not be one of them <img src="i/expressions/face-icon-small-smile.gif" border="0">, but I am pretty open-minded too, so I tend to get along with all different kinds of people. And even though I am a practicing Christian, I promise never to say that I will pray for you, lol. I understand that for a lot of people, saying that doesn't help them one bit. So welcome, please hang out here for a while and I think you'll find a pretty cool group of people- some like yourself, and some different but still cool.

One thing though, and I realize that this is probably very un-hip to say, but if you're going to do the pot thing, do yourself a favor and get some brownie recipies from the folks on this board. I'm sure it'll have the same effect, and you'll be grateful you did it later in life (this from an oh-so-wise 22 year old).

Anyway, I'll quit preaching. Welcome <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I could certainly be wrong, but it may be that "hip" people with cf as you call it do not care about hearing what other people say about cf. Some ignore the fact that they even have cf and do like you said and abuse their bodies or do whatever feels good at the time because "they are going to die anyway". That may be part of the reason you are looking for. Good luck.

 

[Emily65Roses]

"I'm sure it'll have the same effect"
Helll no... a brownie high is soooooooooo much better. Hahaha. It lasts longer, and it's just a much better high.

But yeah, I do some of that stuff. I don't have an ipod, because I don't care, and I'm not rich. Not a Clash fan. But I have my own things. And the thing is, I don't care what people think of the CF, so I don't need to separate it from the rest of me. At least not generally. But if you're "hip" why are you saying hip? I don't remember the last time I heard that phrase. Hah.

 

[WinAce]

Also, if you're looking for "hip diseased" folks, why are you on this forum, as opposed to, say, one for geriatrics?

</bad pun>

 

[Emily65Roses]

*snort!!!* lol

 

[jacobus]

<blockquote>Quote<br><hr><i>Originally posted by: <b>notacrook</b></i><br>hi.

. i'm just feeling so frustrated and feel like i am trapped in some really bad movie with mother's of children w/ CF who wear sweatshirts with kittens on them or something.

please tell me i am not alone.<hr></blockquote>

lol. you are not alone. i feel like that all the time!

 

[anonymous]

i'm hip "dic a dic a dic a dic a dic"

 

[luke]

Nota',

What I feel is incredibly interesting is your definition of "hip". I may still consider myself "hip" but not by your definition. I do not smoke pot or take any illegal substance (for 5 years now), I do believe in god, I do not make of habit listening to the clash and I rarely go to bars anymore. But as I look on your list I realize I used to be hip, or as I call it "being 21". There all kinds of interesting posters to this forum who get tired of being the "CF soccer mom" or "CF poster child" too, you are not alone. Just look around you.....


Luke

 

[Mockingbird]

You've come to the right site if you're looking for people who are real with themselves, but be warned if you piss someone off, it's gonna start a fight. =-) That's the consequence that comes from hanging around with people who aren't sheep.

If you're looking for your own little clique, though, you're gonna be dissapointed.

 

[JennifersHope]

I am the biggest dork ever because I came on to this thread thinking that it was for people with Hip diseases. Being that I have a hip disease, I was excited to see what others were going to post. <img src="i/expressions/face-icon-small-blush.gif" border="0">


Jennifer Queen Dork

 

[JazzysMom]

I debated whether to respond because I wanted to make sure I got my thoughts into words. Absolutely this is YOUR definition of "hip". For what you are looking for isnt the same "hip" that all of us are looking. You state that you you want a more "realistic" view of the disease in a normal functioning society. Forgive me, but I believe we live in a time where "everything" is somehow considered normal (except child molistation). Our outlook on CF here is according to not just what we encounter today, but our experiences over the years. It is a place that the one thing we definetely have in common is CF. Do you not want to talk about CF? You are in the wrong spot. I believe you dont want to dwell on the negative aspect & maybe you are fortunate enough that you dont have to or maybe you are in denial & choose not to. I use to be like that...Before I became more responsible...Before I became a Mom & Wife...Before my family/home/animals became the most important thing of all... Before I had to decide between the expensive tequila or buying my daughter that extra playstation 2 game...Before I didnt have a choice. I expand my options. I choose to not HAVE to correspond with the people that like the same things or have the same outlook. It can get boring like that. What I do know is if I went solely by what you like vs what I like that we would never be friends. Although I understand your needs.....I think you would benefit more if you looked farther. As to your requests.....I dont drink or smoke pot much because I dont like how I feel anymore. I dont own an ipod because I think our society spends too much $$ on things that arent necessary. I have a celll phone & so does my husband, but its basic equipment for emergency type stuff. No voice mail, no camera in it. I love almost all music & will break into a dance or song at any given time when I hear something I like. That drives my daughter nuts. I use the f word, but try not to because I think it makes me look like less of a person (my opinion only). The rest of what you stated....I have no idea what they are or who they are. Doesnt mean I am not "hip". Thanks for listening!

 

[anonymous]

Like someone else mentioned, check out the Off Topic section for music likes/dislikes, tv show info, etc. and also if you haven't checked it out, there are sections for Young People, Teen Agers, etc that maybe more "HIP" then posting with some of us 'old foggies' in the Adults section. Hopefully there's a section where everyone feels comfortable. Welcome!<img src="i/expressions/musicnote.gif" border="0">
A mom w/ kitty sweatshirts<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Mockingbird]

<blockquote>Quote<br><hr><i>Originally posted by: <b>JennifersHope</b></i><br>I am the biggest dork ever because I came on to this thread thinking that it was for people with Hip diseases. Being that I have a hip disease, I was excited to see what others were going to post. <img src="i/expressions/face-icon-small-blush.gif" border="0">

Jennifer Queen Dork<hr></blockquote>

=-) ha ha, it's all right. i do things like that all the time. On another forum, somebody titled their thread "Hello Evri1" I was like, "Who the hell is Ervri1? i've never seen that screen name before. =-) Another time, a thread was titled, "Welcome to the group mum" Mum being someone's screen name. I didn't realize that, though, and i was wondering what exactly a group mum was. =-)