You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
robers life
- Thread starter anonymous
- Start date
NoDayButToday
New member
<blockquote>Quote<br><hr>....instead of being nasty, let's direct them in the right direction, ok? <hr></blockquote>
Which is exactly what Kylie did, so I don't know who your post is intended for.
Which is exactly what Kylie did, so I don't know who your post is intended for.
the 'sheesh' comment is completely justified. battens disease does not have anything to do with cf and is in no way similar, so i dont know how on earth this person ended up here and what they expect from us. look at that website and you will see what i mean. we are in no position to be giving advice. besides, i dont exactly see you putting up any helpful website links, do i?
thefrogprincess
New member
Obviously the poster is very distraught, people!!!! Her kid is dying. I looked up battens disease and you thought CF was bad?!?! Be glad you don't have that. Yes, it was posted at the wrong place but this person needs support and help not bickering. We understand what its like to see our loved ones get sick and die so how about we help this person and not fight with each other. Sometimes the people on this forum can be extroidonarily childish. Life's too short, as you SHOULD know.
Mockingbird
New member
give kylie a break. She did point the person to somewhere they could be helped a lot more than than they could here. And anonymous, if you're going to criticize someone, then have the courage to leave your name, otherwise it's just annoying.
vickysmommy
New member
What's Battens disease anyway, Never heard of it. And to you people that are lashing out at the person who originally posted, that is just wrong, maybe this person just wants someone to talk to who has a life threatening illness like her child. Ever thought of that? Besides CF is not all we talk about on this thing anyway, there are lots of off the topic subjects that we get into. It wouldn't hurt to help a person out once in a while. To the original poster, if you need to talk you can E Mail me anytime Vickysmommy1@aol.com or Vickysmommy1@Netzero.com
yeah good one guys. im still waiting for some bright spark like myself to put up more helpful websites. or you could just sit there and don your PC brigade hats? you choose...
vickysmommy, read the battens disease website and you will see what it is. also read the discussion boards then you will see people on this board CANNOT relate one single bit to someone with battens or their families. its all nice and cute to say we can relate, but sorry, we cant relate to someone who will <b>definately</b> die by the age of 25, lose their minds at the same time and not have anything available to even slow the progress. maybe you can relate to the irrational behaviour some people with battens exhibit? doesnt look like many people have bothered to actually look at the website. goes to show everyones more concerned about typing stupid comments than learning about a disease other than cf.
thanks coll and mockingbird.
vickysmommy, read the battens disease website and you will see what it is. also read the discussion boards then you will see people on this board CANNOT relate one single bit to someone with battens or their families. its all nice and cute to say we can relate, but sorry, we cant relate to someone who will <b>definately</b> die by the age of 25, lose their minds at the same time and not have anything available to even slow the progress. maybe you can relate to the irrational behaviour some people with battens exhibit? doesnt look like many people have bothered to actually look at the website. goes to show everyones more concerned about typing stupid comments than learning about a disease other than cf.
thanks coll and mockingbird.
Kylie
You are down right NASTY. Maybe you should grow up and learn some 'empathy'. Perhaps you have lived the most educated life of all of us here, but indeed, some of us have looked up the web site for Battens disease. No that does not mean that I can help this mother but is also doesn't mean I will be rude and come off as an insensitive idiot. Maybe you could realize that other people have it worse off than you and you should be thankful and helpful to those who will not live the life you are able to live. You get so much farther with kindness than with nastiness, and hopefully you will learn this before you become a bitter person. I know that WILL kill a person.
You are down right NASTY. Maybe you should grow up and learn some 'empathy'. Perhaps you have lived the most educated life of all of us here, but indeed, some of us have looked up the web site for Battens disease. No that does not mean that I can help this mother but is also doesn't mean I will be rude and come off as an insensitive idiot. Maybe you could realize that other people have it worse off than you and you should be thankful and helpful to those who will not live the life you are able to live. You get so much farther with kindness than with nastiness, and hopefully you will learn this before you become a bitter person. I know that WILL kill a person.
I don't usually get involved in these back and forth discussions/arguments, but feel compelled to jump into this one..... I also interpreted Kylie's response as insensitive and rude, although I'm sure she was trying to be helpful. It is good to keep in mind that not everyone is computer educated/tech savvy, and this person may not be familiar with internet, search engines and how to find information that is related to what she is looking for. She may have just typed in 'childhood disease' or something similar and come up with this forum. Who knows??? I think we should cut the original poster a bit more slack and provide understanding and support, rather than frustration that she posted in the wrong place. Whew, now I feel better. Thanks for listening.
Kim
39 w/cf
Kim
39 w/cf
<blockquote>Quote<br><hr>Maybe you could realize that other people have it worse off than you<hr></blockquote>
dear <b>anonymous</b>, last i believe, i was pointing out the seriousness of battens, how much worse it is than cf and how we should forget our disease for just one moment to read up on battens. if you are only going to read what you want to see then thats fine by me, but remember you are confusing everyone that isnt you. if you dont like the help ive given then thats ok, if it makes you feel better to tell sugarcoated lies to the person asking for help then by all means do it, but you arent giving the person the help they need. not that youre doing that anyway. how about you practice what you preach and give the person some of your advice? you had the chance but you wasted it typing a comment aimed at me. am i the only person who is going to help? because it seems out of all the bickering, me, the big bad wolf is the only person who has bothered to help this lady without even questioning her authenticity.
dear <b>anonymous</b>, last i believe, i was pointing out the seriousness of battens, how much worse it is than cf and how we should forget our disease for just one moment to read up on battens. if you are only going to read what you want to see then thats fine by me, but remember you are confusing everyone that isnt you. if you dont like the help ive given then thats ok, if it makes you feel better to tell sugarcoated lies to the person asking for help then by all means do it, but you arent giving the person the help they need. not that youre doing that anyway. how about you practice what you preach and give the person some of your advice? you had the chance but you wasted it typing a comment aimed at me. am i the only person who is going to help? because it seems out of all the bickering, me, the big bad wolf is the only person who has bothered to help this lady without even questioning her authenticity.
Kylie,
Offering to help? You come across as insensitive. I think that Kim has the right aspect. And obviously, none of us can help the poster or his mother. I realize I cannot help her, but more importantly I know when to leave well enough alone! I chose not to give any advice rather than mean or insensitive advice. And I didn't see any good advice from you, other than for her to go else where. I would guess that the mother, after seeing the comments here, would obviously go else where, or at least never come back here.
Offering to help? You come across as insensitive. I think that Kim has the right aspect. And obviously, none of us can help the poster or his mother. I realize I cannot help her, but more importantly I know when to leave well enough alone! I chose not to give any advice rather than mean or insensitive advice. And I didn't see any good advice from you, other than for her to go else where. I would guess that the mother, after seeing the comments here, would obviously go else where, or at least never come back here.
Kylie i have to admit that you did come off sounding offensive towards this woman and her problem. Im glad you were able to provide her with a link about battens disease, but you could have done it with a little nicer attitude. No meaning to offend here, just my two cents worth.<img src="i/expressions/face-icon-small-confused.gif" border="0">
TinyLaBruja65
New member
wow you guys shut up!!!! this lady is asking for information!!! not a whole load of chit going around!!! she wants support!! so im guessing if she is anything like me! she will will expect some answers or responces to HER POST not people fighting!!!!then her heart sinks seeing what everybody writes!!!! and dont be rude to her!!!!! you should all be ashamed of yourself...really...
TinyLaBruja65
New member
and to jarod..this is the first time ive ever gotten against you..but you shouldnt say "it gets annoying" maybe they dont want people knowing who they are...its just who they are...give her a break..PLEASE?!?! i know ive been annoying and such in the past..but people...please give her a break and just help her out as much as you can...
Mockingbird
New member
I don't mind if someone posts annonymously because their embarrassed or whatever and they just don't want their names out there, what bugs me is when people throw out a bunch of criticism and don't leave their name. =-) I wasn't talking to the mother when I said that, I was talking to whoever posted just before i did. =-) That's what is annoying.... and also the person who posted above Kim... and the one posting right before Diane. Probably the same person. When people lash out like that, they should leave their name, that's all.
And to the annonymous poster, (Not the origional one, the other one) Seriously, lay off. You're being way more nasty than Kylie ever was. Kylie pointed the mother... actually it doesn't say mother or father, but anyway Kylie pointed whoever it was in the right direction, and I'm sure he/she's a lot better now. Do you really think he/she would still be haunted by anything that kylie said? The person probably forgot it a long time ago, but you're still hanging on to it like it makes a difference. Just let it go.
And to the annonymous poster, (Not the origional one, the other one) Seriously, lay off. You're being way more nasty than Kylie ever was. Kylie pointed the mother... actually it doesn't say mother or father, but anyway Kylie pointed whoever it was in the right direction, and I'm sure he/she's a lot better now. Do you really think he/she would still be haunted by anything that kylie said? The person probably forgot it a long time ago, but you're still hanging on to it like it makes a difference. Just let it go.