Everyone lets calm down a little here...

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Seana30

New member
Courtney's last PFT's were 120%.

You can not imagine how happy that makes us!

When she ended up in the hospital this past February with a lung infection and a 104 fever it was TERRIFYING!

Although we know over all her health is good, I was scared, mad, and unsure of what was going to happen. It was the first time I had dealt with lung issues with Courtney.

I came onto this site and let everyone know how scared I was. Did I complain???? You bet your butt I did!!

The wonderful thing about this site is I was able to come here......give my complains and worries, and had MANY people calm my nerves and give me GREAT information.

THAT IS WHAT THIS SITE IS ALL ABOUT!!!!!

Seana
 
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Faust

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

I just think its friggin' great that this dude is complaining about how he hates that people are complaining.</end quote></div>



You are late on that ma'am. I noted the irony in that with my very first post early this morning. Don't make me call the plagiarism police on you! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Lilith

New member
I agree with Chad and Liz. This post is one big contradiction. And that's all I'm gonna say for now, because otherwise I'd probably say things I'll later regret...
 
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thelizardqueen

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

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



I just think its friggin' great that this dude is complaining about how he hates that people are complaining.</end quote></div>







You are late on that ma'am. I noted the irony in that with my very first post early this morning. Don't make me call the plagiarism police on you! <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>


Come on Sean - you do know that great minds think alike.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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coltsfan715

New member
Well said to the last annon poster. So true.

Further I was thinking more about your post today and actually thought alot in line with the annon poster above. I myself am 23 and recently have had PFTs in the 30% range with O2 sats in the high 90s on healthy days and around 93-94 at sick times. I force myself to do the things that I have always done. I force myself to run errands because I know the "exercise" of getting up and doing it will be good for me. I love going to WDW (a two hr trip for us) and I force myself to go and walk all day even if I think it will be hard because I know I need to keep doing things. I can't just stop because that is when CF wins. I have had PFTs in the 30s and 40s for the past few years. Through my teens I kind of leveled off at about 60%. I thought I was pretty bad then and didn't see how I could handle anything lower. As they have dropped I don't really feel that much different to be honest - with heavy exercise I get short of breath easier but that is to be expected. My main problem is when I get sick I feel a huge difference whereas before I would get sick and kind of feel bad - now I feel like I could crawl in a hole and never come out when I get sick.

I love coming on here and reading about all the adults older than me and how well they are doing - it gives me a bit of hope because before this site I didn't know anyone that was older than me with CF. Save one person and she is practically scared to live - leave her house, go to school, go to the movies anything - for fear of germs. I watched all of my friends die at a young age (8-16) and cut myself off from others with CF due to that - so this site is great for me in that respect. At the same time it is very hard at times to come on here and read about people that are older than me or the same age I am and how well they are doing and how they have PFTs in the 70s 80s and 90s and what have you. It was hard at first because it made me think that I was doing something wrong or worse yet I wasn't doing something that I needed to be doing. I do everything I am supposed to according to my docs and still can't get my PFTs up so what was I supposed to think. I think it all boils down to - I get jealous when I read some of the posts about how "low" (to them high to me) their PFTs are and I wish I could have their PFTs - but that is normal who wouldn't want to be healthier. It can be disheartening to read and it can make you think "why me" why is it my health is this bad and theirs isn't, ya just can't focus on that cause then it would make coming here and reading some of the posts unbearable. Then you may stop coming here entirely and if that were the case you would miss out on some great people, great topics/ideas, great fun and support.

I know that may seem a little off the topic, but I really was thinking alot about your original post because I have had my moments where I sit and roll my eyes or get irritated when people talk of things like "low" PFTs or what have you. Then I just tried to rationalize the reasons that I did that and thought maybe I would put that out there in case you were feeling the same way and felt angry at the people "complaining" about something you wish you had. Not trying to put words on your mouth just putting my thoughts out there.

Hope to hear/see you post again mike.

Lindsey
 
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julie

New member
I'm really stunned by this post. Nearly to the point of being speechless, which is pretty rare for me.

First of all, welcome to the site. I hope that you will learn a lot and make some good friends/acquaintances.

Second, this is where we all come, CFers, wives/husbands/bf/gf of CFers, friends of CFers, family members of CFers, parents/grandparents of CFers to share what's going on in our lives. Sometimes it's really good news, sometimes it's realy bad news. And sometimes we are just having a bad day and know that we can share it on here. That someone, anyone, will understand-and they do.

And quite often it's really difficult for some people to share their concerns, fears, problems and such so SHAME ON YOU FOR JUDGING THEM, that's not what this site is about. There are always going to be posts on here that leave you scratching your head (like this one is doing for me) but if you stop for a minute and look around you'll see the "complaining" posts are just as even as the "good news" posts, and we need both to balance out the universe.

Another thing I don't quite understand; it's hard to point out that you don't like the complaining, without complaining yourself. And although I GET the point you are trying to make, I think you got a little too far and start complaining yourself. Now, I understand there is a difference between complaining about your health and complaining about some posts you don't like on the site. But the principal is generally the same. and this is where people are SUPPOSE to come and complain. My family doesn't understand my concerns and fears, as hard as they try and as bad as they want to. And this is the case for many others on here as well. So it's nice that I have this "family" to come and share things with.

I am surprised that you just ran across this site and you feel justified in telling us what you think we are doing wrong. I'm not saying that an older member does or should hold more clout about an issue like this. But come on, give it a few weeks and just see how things go.

Everyone's disease affects them differently. You, having CF yourself should know and understand this firsthand. Some have PFT's in the 70's and are doing pretty good, no other CF issues. Others have PFT's in the 70's but are having frequent lung infections, digestive problems, reproductive problems, home problems.... you never know a persons entire situation so before you judge, take sometime to ask some questions and learn about the individuals on this site.
 
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luke

Guest
On a similar note I have a big issue lately against public protesting. I just can't figure out a way to promote it publicly?

luke
 
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Brad

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

I think you should know more about cf before you bitch at people about how they feel. Just cause your sick and dont have 80, doesnt mean people at 80 dont feel sick. Ive a function of 73 and can drop to 50 over night. Now tell me how that feels on my body?? Thats right you cant, cause you have no idea. How bout the fact that I have 73, but my weight and blood can be weak, and I feel anemic and diabetic most of the time. Cf works on many different levels of sickness, numbers mean *****. You should go to a psych to control your projection and displacement over your cf. People on this site suffer too. Your not the only one. Grow up and be a soldier instead of crying about it. Now ***** off.



Chad</end quote></div>


Nice Post Chad <img src="i/expressions/beer.gif" border="0">

And Sean, you can send the Strippers to my house <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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fugikitten2087

New member
I agree with you, that some people complain about what would seem trivial things. But as others have said to one person it may seem the end of the world. I did an FEV1 they are down by 9% I'm at 46% this scares me. To me that 9% drop in a month was the worst thing they couldve told me. I'm an EMT so I see people who arnt as sick as they say they are all the time thoose people erk me a little but i take it in stride. Because to one person it can be the difference between mild and severe. Every once ina great while we have to let loose, we have to be ourselfs and just bitch, get it out. When i found out that coughing up blood was normal I tried to bottle it up, I tried to pretend it wasnt happening. That was a mistake. Some people need to get it out right away that way it doesnt eat at them. Please dont be offended by what I've said. I'm greatful for what healthy days I do have and I dont mean to sound as if Idont. The disease it's self you cant really take for granted after a certain point it reminds you it's there. If I miss one breathing treatment I cant walk 100 feet with out gasping. I understand what you saying but I also understand what every one else is trying to say. I wish you the best and wellcome to the site.
 
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