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Much More Friendly Place!!!
- Thread starter anonymous
- Start date
Emily65Roses
New member
I don't wish to argue, just wanted to state in the forum's defense:
This place would be perfectly friendly if people weren't so afraid of hearing the truth. That's all.
This place would be perfectly friendly if people weren't so afraid of hearing the truth. That's all.
Augustmom0003
New member
I'm a member of both boards and I really don't see this board as "unfriendly". The other board is just smaller and focused on younger kids. It's still small enough where we all pretty much "know" eachother. I really don't think that anyone is afraid of hearing the truth it's just that for some parents, it's hard. We know the truth, we know what CF can do and if it were possible, we'd GLADLY take the place of our child. Some parents just can't hear it every day, all day AND stay positive. Every parent has their own way of dealing/coping with their child's diagnosis and different parents need different kinds of support.
Amanda
Mommy to Kenzie (5, wocf) and Ethan (2, wcf)
Amanda
Mommy to Kenzie (5, wocf) and Ethan (2, wcf)
I like Amanda (Hello Amanda, wow you got a new keep board and you are tying away!) am a member of both groups. The one posted up top in the opening post of this thread and this group. I have to agree with the inital poster, whoever they are, that the yahoo group is a much better place for people with infants and small children to be than here anymore.
I believe the Adult section of this board has become a very unfriendly place to be for a parent of a young CFer and I while I will still lurk here, I seriously doubt I will post much because of the fear of being attacked or my legitimate question become a thread for others to play in and make jokes to each other. There is private e-mail and blogs for that. I guess I am just really saddened because my daughter is 27 months old and I have been coming to this board for quite some time now, well over a year and a half and though I don't post a lot here, I have learned a lot of information from the Adult section of this board about how my daughter's life may be when she gets older and I have gained so much encouragement from the adults who are living to be older and older, which gives me great hope for my daughter.
So anyway, just wanted to point out that the Yahoo group is great and we have a wealth of information on CF and particularly with infants and toddlers with CF!
I believe the Adult section of this board has become a very unfriendly place to be for a parent of a young CFer and I while I will still lurk here, I seriously doubt I will post much because of the fear of being attacked or my legitimate question become a thread for others to play in and make jokes to each other. There is private e-mail and blogs for that. I guess I am just really saddened because my daughter is 27 months old and I have been coming to this board for quite some time now, well over a year and a half and though I don't post a lot here, I have learned a lot of information from the Adult section of this board about how my daughter's life may be when she gets older and I have gained so much encouragement from the adults who are living to be older and older, which gives me great hope for my daughter.
So anyway, just wanted to point out that the Yahoo group is great and we have a wealth of information on CF and particularly with infants and toddlers with CF!
ok so it was ME that posted this link!! and I did it without signing my name because i didnt feel like being bashed!!!! I posted this link because I wanted ppl with little ones to have a place to go and talk without all the drama.. If someones child has just been diagnosed i want them to be able to ask questions and get support NOT get tied up in a bunch of drama... I have been a faithful lurker of this site and the cfinfant site for as long as i can remember but i rarely ask questions, and rarely reply to questions, but im reading everyday <img src="i/expressions/face-icon-small-smile.gif" border="0">.... I really didnt mean to start a war, and im sorry that i did.. i have no problems with the ppl on this site i just wish there wasnt so much drama.. Ok im going back to the side lines now!! lol <img src="i/expressions/face-icon-small-smile.gif" border="0">
Melissa mom to dylan 7 no cf and caleb 4wcf
Melissa mom to dylan 7 no cf and caleb 4wcf
Emily65Roses
New member
No war here.
There's a big difference between adults with CF and parents of young CFers. That's why the family section was made. For you guys. The adult section is going to talk about a lot more in-depth stuff that you aren't dealing with yet. A lot more moderate/severe stuff. It's generally not stuff you're dealing with yet, and generally not stuff you're <i>able</i> to deal with yet. That's your deal. If you prefer to go somewhere else, that's fine. But that's what the family section here is for. It's generally a lot less dramatic and pissy because it was made just for people like you. The other section is more for people like us. And if you can't relate or don't want/need to hear it, then maybe sticking to this section, or your other site, would be best.
There's a big difference between adults with CF and parents of young CFers. That's why the family section was made. For you guys. The adult section is going to talk about a lot more in-depth stuff that you aren't dealing with yet. A lot more moderate/severe stuff. It's generally not stuff you're dealing with yet, and generally not stuff you're <i>able</i> to deal with yet. That's your deal. If you prefer to go somewhere else, that's fine. But that's what the family section here is for. It's generally a lot less dramatic and pissy because it was made just for people like you. The other section is more for people like us. And if you can't relate or don't want/need to hear it, then maybe sticking to this section, or your other site, would be best.
I for one will be checking out the new site and I thank you. I just found this board a few months ago and I have been reading lots. My CFer is 23 months. To be quite honest I can't take all the "honesty" from some others. I know my son has CF and I know what CF leads to but to hear it everyday gets me so down. I am looking for some support on dealing with issues and not being bombarded with the"cold hard facts of CF."
I just hate it when I post about something -- medications, enzymes, concerns with cross contamination and someone slams me. I state concerns about letting my child be around other cfers, concerns about cepacia, concerns about hot tubs and I'm told I'm being over protective. And then when daycare is mentioned -- no the same people who were spouting off about letting my kid be a kid -- oh, you're a horrible parent because you send your little girl to a daycare. Only sprinkle enzymes on fruit -- "that's stupid"
It's so frustrating dealing with this disease and then being criticized all the time for stating concerns about medications, treatments, germs...
Or how many times do I have to hear that NEW people are causing all the problems.
Janey
It's so frustrating dealing with this disease and then being criticized all the time for stating concerns about medications, treatments, germs...
Or how many times do I have to hear that NEW people are causing all the problems.
Janey
thelizardqueen
New member
I think for all the people who think that the Adult section is not a friendly place, I would suggest that you post in the Family section. The family section is for parents who's kids have CF and can come for advice. The Adult section is for ADULTS WITH CF. Us adult CFers are going to be honest about our condition. That's what the forum is here for. I hate to say it, but its true. I'm not going to hold punches back in the adult section, because majority of the posters there are adults with CFers.
I guess I've always thought of the adult section as a place to find out about future issues. And I've gotten a lot of good advice about medications, travelling with a cfer... And sometimes I know people post in the family section, don't get a response, so they'll post in the adult area to see if any of the older, experienced cfers have had a similar issue.
If I don't like the contents of the post, the person who posted it or it doesn't pertain to me or my son, I usually just skip it. Sometimes my feelings have been hurt -- sometimes the comments have been directed at me or something I've said. Other times it's just the way I've read a post. Unlike talking to someone in person or on the phone -- with email you don't get the facial expressions, vocal inflections showing emotion. Sometimes things said as a joke or maybe the person has a different opinion on a topic just fall flat -- what I'm reading isn't what the poster meant to say. Sometimes, though people are just plain rude!
I'm a member of a local forum in my city and the people on that board are just plain ruthless! And there are no moderators. If people disagree with you, they'll track down info on you -- personal details, name occupation, address... And they'll post it on board. If any of you have a serious issue with someone who posts -- if it's to the point of harrassment, or is uncalled for -- I believe you're perfectly welcome to report the post. Liza
If I don't like the contents of the post, the person who posted it or it doesn't pertain to me or my son, I usually just skip it. Sometimes my feelings have been hurt -- sometimes the comments have been directed at me or something I've said. Other times it's just the way I've read a post. Unlike talking to someone in person or on the phone -- with email you don't get the facial expressions, vocal inflections showing emotion. Sometimes things said as a joke or maybe the person has a different opinion on a topic just fall flat -- what I'm reading isn't what the poster meant to say. Sometimes, though people are just plain rude!
I'm a member of a local forum in my city and the people on that board are just plain ruthless! And there are no moderators. If people disagree with you, they'll track down info on you -- personal details, name occupation, address... And they'll post it on board. If any of you have a serious issue with someone who posts -- if it's to the point of harrassment, or is uncalled for -- I believe you're perfectly welcome to report the post. Liza
I am a "lurker" on this forum site......I do have a user name, but have never used it, because I am usually at work (lunch hour) when I come on the site to gain knowledge. I am the mother of a cfer, teenager<img src="i/expressions/face-icon-small-confused.gif" border="0">and she has gained a lot of insight into dealing with CF on this website. This is not a great disease to have folks and us the parents do not know what it feels like, yeah I know........everyone of us wishes we could trade places with our CFer, but we can't! We do not know what they will be like when they are older and I for one am thankful that they have a place to go to "talk", "rant", be shown kindness and understanding, support and all the lovely things that I have seen on this forum. Believe me the older your child gets the more questions you have and the only answers out there come from the older CFers. My thanks to all, and I mean all or you for your knowledge and opinions! I for one will continue to "lurk" here. Debbie, mother to Tamara
Emily65Roses
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
yeah I know........everyone of us wishes we could trade places with our CFer, but we can't!</end quote></div>
As long as you try (because it's all you CAN do)... which can be done just by caring, we're generally happy. My Mike can't understand, obviously, anymore than any parent or sibling or other spouse can. But he tries. If it's possible to feel someone else's physical pain just by trying, he does. He listens when I talk. I know he'd switch with me if he could (and if I let him, which I wouldn't hahaha).
By trying your best, you're making a big difference. And like I said, it's all you CAN do. <img src="i/expressions/heart.gif" border="0">
yeah I know........everyone of us wishes we could trade places with our CFer, but we can't!</end quote></div>
As long as you try (because it's all you CAN do)... which can be done just by caring, we're generally happy. My Mike can't understand, obviously, anymore than any parent or sibling or other spouse can. But he tries. If it's possible to feel someone else's physical pain just by trying, he does. He listens when I talk. I know he'd switch with me if he could (and if I let him, which I wouldn't hahaha).
By trying your best, you're making a big difference. And like I said, it's all you CAN do. <img src="i/expressions/heart.gif" border="0">
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>
I don't wish to argue, just wanted to state in the forum's defense:
This place would be perfectly friendly if people weren't so afraid of hearing the truth. That's all.</end quote></div>
Well said.
And to that I would like to add - not everyone is going to agree with everyone. And that's OK.
If you're on this forum to get your ego stroked, go elsewhere....
I don't wish to argue, just wanted to state in the forum's defense:
This place would be perfectly friendly if people weren't so afraid of hearing the truth. That's all.</end quote></div>
Well said.
And to that I would like to add - not everyone is going to agree with everyone. And that's OK.
If you're on this forum to get your ego stroked, go elsewhere....
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
I for one will be checking out the new site and I thank you. I just found this board a few months ago and I have been reading lots. My CFer is 23 months. To be quite honest I can't take all the "honesty" from some others. I know my son has CF and I know what CF leads to but to hear it everyday gets me so down. I am looking for some support on dealing with issues and not being bombarded with the"cold hard facts of CF."</end quote></div>
wow....
I for one will be checking out the new site and I thank you. I just found this board a few months ago and I have been reading lots. My CFer is 23 months. To be quite honest I can't take all the "honesty" from some others. I know my son has CF and I know what CF leads to but to hear it everyday gets me so down. I am looking for some support on dealing with issues and not being bombarded with the"cold hard facts of CF."</end quote></div>
wow....
actually there are a lot of good support groups for parents - some even in the real 3d world.
The adults forum is the only support group for adults with cf - they can't meet in person support groups because of cross-contamination fears and such. That's why I figure they sort of get to set the tone of that forum (since it's their only one.) Nice to know our kids will have a support place when they get older.
The adults forum is the only support group for adults with cf - they can't meet in person support groups because of cross-contamination fears and such. That's why I figure they sort of get to set the tone of that forum (since it's their only one.) Nice to know our kids will have a support place when they get older.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thelizardqueen</b></i>
I think for all the people who think that the Adult section is not a friendly place, I would suggest that you post in the Family section. The family section is for parents who's kids have CF and can come for advice. <span class="FTHighlightFont">The Adult section is for ADULTS WITH CF. Us adult CFers are going to be honest about our condition.</span ft> That's what the forum is here for. I hate to say it, but its true. I'm not going to hold punches back in the adult section, because majority of the posters there are adults with CFers.</end quote></div>
New to this board but if adults with CF post to other adults with CF on the Adult section then why are you on the family board? Not trying to start a war it just seems conterproductive to post one thing but do another.
I think for all the people who think that the Adult section is not a friendly place, I would suggest that you post in the Family section. The family section is for parents who's kids have CF and can come for advice. <span class="FTHighlightFont">The Adult section is for ADULTS WITH CF. Us adult CFers are going to be honest about our condition.</span ft> That's what the forum is here for. I hate to say it, but its true. I'm not going to hold punches back in the adult section, because majority of the posters there are adults with CFers.</end quote></div>
New to this board but if adults with CF post to other adults with CF on the Adult section then why are you on the family board? Not trying to start a war it just seems conterproductive to post one thing but do another.
Don't worry anon, I'm not new to this board and I was wondering the same thing after all the controversey going on, on the adult board. A number of people suggested to parents if you can't handle what's said on the adult board, stick to the famlies board. But then some of those same people come to the families section and post comments about the realities of the board and of CF. It just all doesn't make sense to me.
so you aren't the only one, don't worry about it.
so you aren't the only one, don't worry about it.
Em and Liz,
Give it a rest. Yes this is the family section and is a more appropriate place for parents, especially parents of young kids, to come. We get it. Do you?
It's not that parents aren't looking for honesty, some just aren't ready for the whole picture yet. When they're ready for more maybe they'll check in on the adult site. Also, keep in mind there are plenty of adult CFer's that know the truth but choose to keep a positive attitude. That doens't mean they're in denial.
You should also remember that there are still plenty of parents burying young CFer's. I'm quite sure those parents have had their fill of the truth and maybe just need some support; something that seems to be lacking in the adult section lately.
Give it a rest. Yes this is the family section and is a more appropriate place for parents, especially parents of young kids, to come. We get it. Do you?
It's not that parents aren't looking for honesty, some just aren't ready for the whole picture yet. When they're ready for more maybe they'll check in on the adult site. Also, keep in mind there are plenty of adult CFer's that know the truth but choose to keep a positive attitude. That doens't mean they're in denial.
You should also remember that there are still plenty of parents burying young CFer's. I'm quite sure those parents have had their fill of the truth and maybe just need some support; something that seems to be lacking in the adult section lately.
thelizardqueen
New member
To the two anons - I never once said you weren't allowed in the adult section. If you read my words correctly, I said "I think for all the people who think that the Adult section is not a friendly place, I would suggest that you post in the Family section.". In other words, if you don't think the adult section is friendly to you, then post somewhere else where you'll get the answers you want. I never once said that you were not welcomed. I said that the adult section is where us adults can be honest about things. So for all parents out there, feel free to post in the adult section if you please. And as for why I'm posting in the family section - I was once a child with CF, so I know what your children are going through. I can offer advice about problems your children are having because I've been there, done that. And again to the anon above me, I wasn't trying to start anything with the one comment I had on this thread, so why should I give it a rest with one comment? One freakin' comment I made on this thread. And I'll continue to post on the family section if I have some sort of advice to give. If anyone notices I'm not a regular poster on the family/teen/young adult section. I only post in those sections, when I know that I have advice for you parents. Don't forget, I was a kid once that went through the same concerns that you parents have.