Everyone lets calm down a little here...

[ewhsdavism]

I'm a new member here and I have just ran across this website. My name is Michael, I am 18 (soon to become 19) and was diagnosed with CF at the age of 3. Throughout my child hood, I was very happy with my health condition. Later on in life I took it for granted, and now I am a regular visitor to my hospital (about 9 times a year).

The reason why I posted this thread was mainly to rant. This being my first post, I can tell that I'm going to get a bad rep from it...however I really do feel as if this has to be said.

Every day when I come to the forum I see various threads. So many people are complaining about things that really shouldn't be something to worry about. Things like: "I want my son to be a Vegetarian" or "My nutritionist told me today that I should get a G tube!" I hate the fact that people are taking this disease for granted. So you need a G tube...Get one...I have gotten 3 in my life. So you want your son to become a vegetarian...No...I'm sorry, but it's not possible unless you want your son to be malnourished.

The fact of the matter is that people here seem to be complaining about things that they really shouldn't be. <b>Stop complaining about the disease...because from what it looks like, it really doesn't seem as if 80% of the people here are really that sick</b>

 

[LouLou]

welcome Michael.

 

[JennifersHope]

Hi Michael,

Welcome to this website on CF. I am glad that you have found a place to come and learn and share your thoughts with us.

I know that tact is a skill that comes with age usually, However, I don't find it appropiate for you to be telling anyone that they shouldn't be complaining or that they don't seem as if they are really that sick. You are not in a place to judge anyone on here, so please don't.

It looks like you have been though a lot with your own health, and I am sure you can give some great advice.. but how about just doing that.. advice.. or your own thoughts..but not judging or tellling someone else how to feel or react.

I appreciate what you are trying to say, ( I think) and I agree that seeing the postive things in life is helpful most of the time, but this website is for people to share what ever they need to or want to when it comes to CF.

Jennifer

 

[rcq925]

Welcome Michael.

While I will agree that there might be are some on here that complain alot about things that maybe they should not be complaining about.

I know that a lot of people also come here to vent to others that know and understand what they are going though. I know that I come here often and also belong to some other online groups and it is nice to be able to vent to others with CF or other parents of CFer's because they truly understand what you are going through and sometimes you are having a really bad CF day!!

I am glad that you were healthy until recently and enjoyed a full childhood and I can only hope the same for my daughter, who is 2 now, but I can tell you one thing I will NEVER take her health for granted. We do her treatments, vest and meds religiously and keep all of her doctor appointments because I know if we don't stay on top of her CF, she won't maintain her health.

I really enjoy reading the adult board for the most part (things have gotten very heated lately in some posts!) Because I want to read about the problems my daugher will face as she ages and I am really interested in how the adult CFer's feel about their health, their treatments, their childhoods, ect.

If I see a post where someone is complaining/whining or it doesn't interest me, I just don't read it.

 

[anonymous]

Hi Michael,
I do agree with you somewhat, though people do have the right to use this message board how they wish. Like you, it does erk me that many people here do complain about "little" things when there are many of out there much worse who wish that was our only problems. So it does annoy me when people with higher PFTs, complain about not being able to get disability or not being able to get a handycap parking spot, or is feeling tired from running a 5k, etc, etc. That said, don't let these things get to you, as some of these same people do have some good input on other topics as well. The thing about CF, is everyone is effected differently and some have little troubles and some have a ton. Take care.

 

[thelizardqueen]

Hi Micheal welcome to the site. While I do agree that there are people on this site that complain, I also tend to think that that's one of the reasons we come on here. We come on here to let off some steam, to talk to people and complain or ask for advice that on one else can give you unless they have CF. I don't think that the complaints you mentioned are not good complaints. I'm terrified of g-tubes, so if I'm worried about one, and don't want one, I fight it, and I complain about it. Doesn't mean I'm taking my disease for granted. I can't even count how many times doctors told me I needed something, I fought them on it, and ended up not needing it because I fought to stay off it. You can also become a vegetarian without becoming malnourished. My cousin with CF was a vegetarian, and she did very well for herself.

I hate to say it, but you come off very judgemental. You have no idea what some of us go through on a day to day basis. Yes, you may be healthy for a CFer, but you are not us. You don't know us, or just HOW affected we are. Maybe with age, some wisdom will come to you to not be so harsh with people because of their thoughts and concerns.

I also kind of take offense to this statement: "Stop complaining about the disease...because from what it looks like, it really doesn't seem as if 80% of the people here are really that sick". I have a terminal illness that causes problems for me everyday. I have a right to complain, and yes I am sick thank you very much. If I didn't have CF then I wouldn't be sick. Just because you think people shouldn't complain about things, doesn't mean that they don't have a right to do it. Freedom of speech buddy.

 

[coltsfan715]

Hi there Mike. I hate you feel that way about the site, though I can see how you would think some of the things people worry about are crazy and kind of silly - one thing I always try to remember is it may not be that big of a deal to me because I have either already had to deal with it and it wasn't that bad or I have never had to deal with it so I don't know enough to be concerned.

I personally have never had a gtube - but the thought of it scares me just like the thought of being on oxygen because luckily I have never had to use it. At the same time I had a friend tell me she was considering not getting a transplant because she was told she would become diabetic due to all the steroids. I am diabetic and was amazed that someone could be so freaked out by diabetes that they would pass up the opportunity to extend their life because of it.

CF affects everyone differently - I know everyone here is aware of that - things that seem trivial to one seem catastrophic or monumental to another. It is that way with everything in life. We each have to fight our fight the best way we know how - with strength, laughter, dignity and of course some bickering along with much much more.

If you ever want to talk feel free to message me. I promise I will only bicker about the things that don't pertain to CF lol, that and how stupid people can be (kidding).

Have a good one and welcome.

Lindsey

 

[ewhsdavism]

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

Hi Micheal welcome to the site. While I do agree that there are people on this site that complain, I also tend to think that that's one of the reasons we come on here. We come on here to let off some steam, to talk to people and complain or ask for advice that on one else can give you unless they have CF. I don't think that the complaints you mentioned are not good complaints. I'm terrified of g-tubes, so if I'm worried about one, and don't want one, I fight it, and I complain about it. Doesn't mean I'm taking my disease for granted. I can't even count how many times doctors told me I needed something, I fought them on it, and ended up not needing it because I fought to stay off it. You can also become a vegetarian without becoming malnourished. My cousin with CF was a vegetarian, and she did very well for herself.



I hate to say it, but you come off very judgemental. You have no idea what some of us go through on a day to day basis. Yes, you may be healthy for a CFer, but you are not us. You don't know us, or just HOW affected we are. Maybe with age, some wisdom will come to you to not be so harsh with people because of their thoughts and concerns.



I also kind of take offense to this statement: "Stop complaining about the disease...because from what it looks like, it really doesn't seem as if 80% of the people here are really that sick". I have a terminal illness that causes problems for me everyday. I have a right to complain, and yes I am sick thank you very much. If I didn't have CF then I wouldn't be sick. Just because you think people shouldn't complain about things, doesn't mean that they don't have a right to do it. Freedom of speech buddy.</end quote></div>

Okay....this post is pretty insightful...however, as you said

"You have no idea what some of us go through on a day to day basis. Yes, you may be healthy for a CFer, but you are not us. You don't know us, or just HOW affected we are."

Hmm...okay the reason why i posted this thread...is so that people actually realize that they are NOT as sick as they make themselves out to be. Once again, you can say this, however what do you know about me? I'm not going to list off all my records....but what I'm saying is the fact that people like you are taking their disease for granted. You have NO idea what I go through when I read "Oh...well I blew out 80 FEV1 yesterday...to bad I didn't go higher!" It's like in highschool when the kids used to say "UGH! My dad bought me the Nissan Pathfinder when I wanted the BMW 350Z!!!!"

Please....this is complete utter crap what your telling me.

 

[CFHockeyMom]

Hi Michael,

Welcome to the site.

I know what you are trying to say (I think). Paraphrasing here... Quit your b!tching, things can always get worse. Think positively.

Am I close?

I do take exception with you judging people by reading a few posts. We've got all ranges of health status here and we've said our fair share of goodbye's to many.

Also, this <b>is</b> the place for b!tching! Who else can understand you better than your fellow CFers?

 

[ewhsdavism]

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

Hi Michael,



Welcome to the site.



I know what you are trying to say (I think). Paraphrasing here... Quit your b!tching, things can always get worse. Think positively.



Am I close?



I do take exception with you judging people by reading a few posts. We've got all ranges of health status here and we've said our fair share of goodbye's to many.



Also, this <b>is</b> the place for b!tching! Who else can understand you better than your fellow CFers?</end quote></div>


Nice post! This is exactly what I'm trying to say....all in all, I'm just gonna start out fresh...get a new name, and leave out my bad rep

Thanks!

 

[thelizardqueen]

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


Okay....this post is pretty insightful...however, as you said



"You have no idea what some of us go through on a day to day basis. Yes, you may be healthy for a CFer, but you are not us. You don't know us, or just HOW affected we are."



Hmm...okay the reason why i posted this thread...is so that people actually realize that they are NOT as sick as they make themselves out to be. Once again, you can say this, however what do you know about me? I'm not going to list off all my records....<b>but what I'm saying is the fact that people like you are taking their disease for granted.</b> You have NO idea what I go through when I read "Oh...well I blew out 80 FEV1 yesterday...to bad I didn't go higher!" It's like in highschool when the kids used to say "UGH! My dad bought me the Nissan Pathfinder when I wanted the BMW 350Z!!!!"

<i>I'm offended that you would think I take my disease for granted. I don't. I worry about it everyday. You and I share the same worry's I would assume. My FEV1 is 63% right now. I'm not that far off from you, and I don't think I'm better then you. The problem I have with you, is that you are telling people that the things that worry them are unfounded. What if someone is used to having PFTs in the 80s, and then suddenly it drops to 60%? That is scary for that person. You can't compare all CFers to you, that's like apples and oranges. There are not two cases the same for CF. We all have our own different battles, we all have different things to worry about. CF is a progression. Just like someone progresses from not so good - to being listed for transplants, there are others out there who are not taking things for granted, but have suddenly gone from very good to not so good. Its a scary thing, regardless of how progressed you or that person is. Just like people have different fears. Some people are scared of kittens. Are you going to tell them to suck it up and tell them that there are worse things out there? No - because that is THEIR fear. Not yours. And PS - thanks for telling me that my thoughts are utter crap. That was so nice and non judegemental of you. Have a nice day.</i>


Please....this is complete utter crap what your telling me.</end quote></div>

 

[CowTown]

Hi Michael,

I think similar to what Lindsey said, it's really a matter of personal perspective. Your perspective is coming from a place where you've had 3 gtubes, of course the mention of it wouldn't bother you b/c you've had experience with three of them. The word has never been mentioned to me personally so this is the first time to interprete what that really means to me, for me in my life. If this was my 3rd one, I'm positive that I wouldn't be so negative about it.

Along with you wanting people to not "complain" b/c it's making *you* feel irritated, I think that's when one needs to look at themselves and come to some peace in their own body. No matter how much someone else b!tches, it's ultimately you that has control over how you feel. Actually, no one made you feel irritated. My complaints didn't make you annoyed, you chose to feel annoyed, instead of finding peace within yourself in order to let others be themselves. Likewise, my nutritionist didn't truly piss me off by mentioning that, it was just me reacting and I could have thought more about it and chose not to react negatively, but I went with the feelings instead. That was my choice and now I'm handling the whole subject how I see fit. That's all.

Anyways, welcome to the site and I do hope you find the support your looking for. <img src="i/expressions/face-icon-small-smile.gif" border="0">

My 2 cents.

 

[EnergyGal]

wow Kelly

You express yourself so well. I remember when I was eighteen and was kind of on the thin side and I tried so hard to gain weight. Feeling skiny was always an issue for me. Then my doctor brought in this healthy looking young girl into my hospital room. She was the same age and of course she looked so much healthier than me at the time. That was all I needed to motivate me. I compared myself to her which was not wise but I was just eighteen. Then a therapist who was working on me said, it is not wise to compare yourself to others because you will become vain and bitter. Here is a poem that this therapist shared with me. I will always remember it.




Max Ehrmann


Desiderata

Go placidly amid the noise and haste,
and remember what peace there may be in silence.
As far as possible without surrender
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even the dull and the ignorant;
they too have their story.

Avoid loud and aggressive persons,
they are vexations to the spirit.
If you compare yourself with others,
you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs;
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals;
and everywhere life is full of heroism.

Be yourself.
Especially, do not feign affection.
Neither be cynical about love;
for in the face of all aridity and disenchantment
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself.

You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labors and aspirations,
in the noisy confusion of life keep peace with your soul.

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.

Max Ehrmann, Desiderata, Copyright 1952.

 

[anonymous]

Michael,

It seems like you are going good at looking at the positives of things. I think you could be a good resource to this site to help others who are going though things that you have already done, that it is not a bit deal and reassure them. Like, preveiously mentioned it is all about perspective, and the perspective of your disease getting worse is scary for most. So I say turn what you have into a positive and help those who you feel maybe complaining to help them feel more comfortable, and do this with respect.

 

[Diane]

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

 

[littlemisssilly]

Hi Mike!

Welcome aboard! Interesting post... I think I know what you're trying to say.

Anyway, it's always good to see some 'new blood' coming through on the forum.

While I don't want to sound like I'm patronishing you by saying that maybe with 'age' you'll have better judgment (because that also makes me feel really OLD!... plus I hated being told that when I was younger too) I think I understand where you're coming from.

Only advice I can give.. this forum is like life... there are lots of personalities here that you'll find you clash with and yes, there is a handful of users who just argue for the sake of arguing and just love the sound of their own voices! Just be a better person and rise above it, you can't change people... especially over the net!

Having said that, if you can let that slide then what you'll find on this forum is a really warm network of people brought together by CF who, bickering aside, deeply care for one another when it counts. I think of it as another little family, there'll always be that annoying aunt, uncle, cousin etc that you sometimes just can't stand..... but deep down inside, you care about them and you'd hate for anything bad to happen to them!

I look forward to hearing from you more.. and once again, welcome <img src="i/expressions/heart.gif" border="0">

 

[Faust]

Here is my complaint: Atleast 4 strippers come up to me every single time I go into a nudie bar even though i'm not an old business man in a business suit, and ask me if I want a dance. I tell one no. You would think that first stripper would look out for her fellow cash fiends and spread the words that i'm a waste of time, but NO! Them strippers aren't nice to other strippers ya know.

 

[anonymous]

Welcome Michael....I think youll fit right in.....lol<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[JazzysMom]

First of all welcome....now I have been trying to figure out how to respond because I instantly got pissed. As Kelly pointed out that would be MY reaction so I had to control it. Now I thought & see where you are coming from. Just like in "life without CF" when you hear someone bitchin' about something, you roll your eyes & think....OH PLEASE come back when you have something serious to bitch about. Well CF life is like that to. Most people dont bitch just to bitch tho I do know people like that. However; with CF or any other chronic illness I would think that can be a tad different. Someone might have the same problems as I do, but because of my mental state or environmental influence etc I might handle it better/worse. It doesnt mean I am right/wrong. When I got my first PICC line in 2000 & came home on iv's I thought my world was coming to an end. Someone else who had been doing for years wouldnt think anything of it, but for me it was new territory & it scared me. That goes along with the steroids, the diabetes, the O2 etc etc etc. There are so many aspects in a CFers life that require thought or planning or getting advice & input. I dont think its fair to say that anyone takes their illness for granted or that it seems to you 80% of the people here arent sick. How you can even come up with those statements just from a few threads compared to what our whole day, week, month, year, life is beyond me. If you are just referring to whining vs sucking it up & doing what you need to do.....once again I fall back onto everyone's tolerance & coping is different just like personalities are different!

 

[littledebbie]

I would just like to say as someone who's health is currently crap and I'm staring into the abyss of my doom (ha ha people that's funny)I can see how some posts make you want to beat your head on your desk.<br><br>I try to keep in mind that when somome is say even older than me and talking about how their PFT's went from 85% to 81% (or whatever) that no matter what your health, it is always frightening to see an indication of decline, particularly when you have been working so hard to maintane yourself. <br><br>Also, be careful in decipher what is a complaint and what is a call for inout and discussion. I for one did not see Kelly's Gtube tread as a complaint at all, it was a request for thoughts and opinions on the pros and cons (I think). I do that a lot. what better place to get opinions than from people who have experience. afterall my nutritionist might be very smart but she does not have CF and she has certainly never had a g-tube has she?
<br><br>with all of that said, i welcome you to the site and encourage you to stick around and whine with us, it's theraputic.<br><br>PS...Classic Sean, I love the way you give everyone a taste of your "Alice in wonderland-esque" thought process when they start and introduction thread. Always leaves me floundering to see if it related in anyway to the post, like a Brain teaser from school, on that one the only real tie in i got was the complaining factor...how'd i do?