Just have to post how I am feeling

[julie]

I hardley EVER post about needing anything (prayers, good thoughts, advice, suggestions) although on rare occasion I do. Previously it was when we were going through the IVF and I got so much support here.

I try to be of support to others (I am not perfect though,I have gotten myself caught up in the drama lately and spawned it on a few occasions-not intentionally though) and am always ready to help out with advice related to social security disability (I've helped at least 5 people WIN their SSDI/SSI cases in the last 1.5 years with just my information, NO lawyers or anything and I've helped over about 20 prepare for hearings, application submissions and so on), I give tax deduction/medical related CF advice, information on how to qualify for food stamps using CF food deductions as a medical deduction, and I've created a website for CF related male infertility because there is a NEED for the information out there..., and I do it because I feel it's my contribution to others and it makes me feel good. I am always ready and willing to help out with that info, and I ask for NOTHING in return.

And then when I ask for some support and assistance, thoughts and prayers for my friends at this difficult time in their life (and inadvertantly reading about all the support helps me out too), I get told it isn't CF related. ARE YOU KIDDING ME?? Who is to determine what is and isn't CF related. Clearly there are some black and white situations, but I'm a CF spouse so clearly I have some different things to post about on a number of occasions but I assure you, if I put it in the adults section, it is something that is really affecting me and therefore related to CF because what affects me in turn affects my husband. And in this case, he is having a difficult time with this situation too. He just deals with it differently.

To me this is CF related. It's getting me down and affecting my daily activities and my emotions that a very good friend of mine might see her husband spend years in the brig and then years in Jail. They might loose their car and their house because now she is the ONLY one working, a little girl might grow up without really knowing and interacting with her daddy, and my friend might spend years without her husband right there by her side.

So I post it here because this is like my second family. And I posted it in the adult section because really, how many people go to and read and then post in the OT section? Not many.

I was here years ago when these boards weren't so segregated, and I've gone with the flow of the changes althougth I don't like them at all. But I've done my best to stick to the adults section/OT section/Prayer request section... respectively, and to me, I thought this was more than appropriate to post in the adult section. A number of other things I have been more than happy to put in the OT section. Clearly not everyone would agree with what I said in my post, but for those who care nonetheless (differences aside), they could show their support to the family and as I said before, It helps me deal to see that support for them. And those who didn't really care could just ignore it.

I just can't believe what these boards have discinegrated to. Not everything is bad, but still. If someone can't come here for support when they've belonged and been a member here all along, where do they go?

For those of you who showed their support and offered prayers and thoughts, thank you very much, the family is deeply touched, as am I. I hope you can all understand that this is much more than skin deep for me. It makes me question so many things in life, my own beliefs, morality, my faith, what I am doing with my own life... and I know there are many here who can relate to that in one way or another.

Thanks for listening,
Thanks for listening to me vent,


Julie

 

[Emily65Roses]

I don't really care where you put that stuff, as long as it's labeled "off topic." I can't say I support the whole thing in and of itself, but that doesn't matter. As for where you post it, I don't care (as long as it's labeled, which it was). Just figured I'd say so.

 

[cfmomma]

I appreciate all that you have done for this forum. You may not have CF, neither do I, but we love someone with CF which is why we are hear. Don't second guess the help you have given to the many people hear--you obviously made a big difference in getting them the help they needed. I have been following your friends story on their site and I can see how distressed you would be. It does affect you and your husband, and your little babies. We are pulling for your family and your friends. You made it clear that your post was about your friend in Iraq, if people have a problem then they should just skip the post. Heaven forbid they waste two seconds reading one line of an existing post. It takes a lot more energy to complain than to overlook. Hang in there.

 

[Landy]

Julie
I'm afraid that I was one of those people that didn't respond to your request for thoughts/prayers, however, that doesn't mean that I don't think of/pray for this family throughout my day. Most of the time I don't have a whole lot of time to cruise through all the posts so I skim & add quick comments as I have time/feel is necessary/am in the mood for.
As far as off topic/non CF related, I understand why people put things in the adult section and I really don't care if it's posted there or not & as you know.....you're not the only one that posts off topic things in the adult section & won't be the last, so don't sweat it.
I do appreciate all the time & effort you've put into researching SSI & SSDI as it can be very cumbersome to try to read & understand all the fine print, to know what to say & what not to say when filing, etc. It also helps to have someone that can put it into simple terms we can understand. Please don't feel under-appreciated<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ejwiegert]

Julie,

I read your post both here and in the families section...
1. You have been a TREMENDOUS SUPPORT to me since I joined about a month or so ago.
2. You are an asset to this forum, don't let people who are clearly inflexible or whatever bring you down!
3. Even though I'm new, I don't think it matters what's posted where or how as long as the SUBJECT clearly states what it is so that we (as readers) can easily pick and choose the topics we have time to access and that we feel will help us or where we can help others....WHICH YOU DO and from what I can tell, HAVE ALWAYS DONE! You've been an excellent model for posting ettiquette (sp) for me on this forum!!!
4. I've posted off topic stuff in the family forum, because it dealt with FAMILIES. I think what you posted was both an ADULT issue and a FAMILY issue.

Thank you for always being supportive. Let me know if I can ever help you in any way! I'm always thinking about you, Mark, and the trio as well as your friend, her husband, and their daughter... Thank you for thinking about us!!

Em

 

[julie]

Thanks Em, I know where you are coming from and that you don't agree with what went on. I must have approached it wrong, maybe adding that quote on the end of my post was too much. But I really wanted to just simply post an update of what was going on because I had so many PM's and email's about it. I'm just shocked that it was moved, not because people don't agree with something I posted (because I understand a lot don't agree, nor do I think they should) but rather that it appears it was moved for that reason, because people didn't agree and therefore didn't think it belonged there.

Thanks Shelli, I really appreciate your kind words. I am just feeling so upset and frustrated. It seems that those with CF can ask for support whenever they want regarding whatever (cat going to the vet, family member passing away...) and I 100% supoort those things being posted in the adults section because they relate to their LIFE. But when I, who doesn't have CF posts something, this is how I get treated. I'm just at a loss.

Lynda, don't worry <img src="i/expressions/face-icon-small-smile.gif" border="0"> It wasn't at all the lack of responding that I am upset about. It was the fact that it was removed because a number of people didn't agree with what I posted. Unfortunately I drug it off topic when somebody posted something and probably should have just left it alone, because my purpose in posting was for support for my friend and also some support for myself. Thank you to you too for your kind words.

Emily, I'm glad you've found a home here. No doubt you have missed some of the drama I started that created or rather just vocalized some animosity of some other forum members. Nevertheless, since then, I have tried to be very cautious of my postings without offending others and I appreciate you kind words to me. It's at a time like this, when I feel so discouraged about even being here that makes the difference to me. Thank you for your support!

 

[Allisa35]

Hi Julie. I would say to just try and not let it bother you, but it's easy for me to say that. I know if it was me, I would be upset/hurt too because my feelings get hurt too easily. I don't really know what the big deal was about where it was posted. I could certainly understand you putting it there so that people would see it and send prayers your way. I know they have rules on these message boards, but I think that's being a bit too picky. Nobody is forced to read anything on here.

I know you have answered a lot of my emails and helped me with a lot of questions about disability. I do appreciate it very much.

Try not to let it get to you. Just keep you mind on those babies and preparing for when they are born. And I hope things work out for your friend.

 

[kayleesgrandma]

Julie, I'm sorry that there were some really anal postings about your OT. I totally understand why you posted it. We're your online family and you have a right to come here first. It should not have been moved as it was interesting. I think your little piece about "I don't care..." probably sent some people to their keyboards and that was what got you moved. I totally agree with you! <i>OMG--I forgot this (site) is only for cfrs, by cfrs and should only talk about death and dying and endless medical stuff--I shouldn't even be on this topic! </i> And you're right about other people posting their news, things about their pets, or private lives are sometimes posted here. We all don't veiw the blogs sometimes, I'm at work and don't always have time. As long as it's posted as OT--I usually hit it first. Try to shrug it off and remember that obviously some people here have no lives and live for this site. Also, they need glasses because you posted OT so they could've just breezed on by and not bouthered the rest of us that are now agitated over all the s***t that gets thrown around here.

 

[mcbrash]

What is it we tell people when there is something on TV they don't think should be on?...............DON'T LIKE IT, TURN IT OVER. Why oh why can't people just do the same thing here? You made it quite clear that it was off topic and you did not ask for any opinions, just prayers. There are many times on this board that there are things I don't agree on but I don't waste my time replying unless asked for opinions, I just go and read other topics that are of interest to me.

There are many, many people praying along with you Julie.

Sandy

 

[anonymous]

Julie,
I really don't think anyone (includin me) was all that ticked off about where it was posted. Thouggh frankly as long as we have an Off Topic board I think we should try to use it.

The main thing that I had (and have) trouble with is your seeming insistence that you seem to be saying that to support you and Mark we have to support your causes. I think it is not useful to ask for that. Does that mean that I could/should post on the Adult board about all of the causes that are of importance to me and ask you to donate to them? And if you don't donate or post suppportive replies, should I then take it that you don't support me as an individual?

(I would like to see gay marriage legalized in all states - not just my state of Massachusetts. Not having it legalized posses a good deal of stress on one of my friends - which is then stressful on me which probably affects my overall stress level when dealing with CF family members . Should I say this belief/desire of mine is CFrelated and ask for support from all her in the form of supportive replies and of donations to a group that is working for that and then suggest if not given whine that I'm not getting the cf-related support I need?)

You mght see this as just about stress for you and your worry about your friend, but in the broader context it is about much bigger issues. If we all just post about our own individual causes up here on Adults and ask for support and then take personal offense if its not given, this site will disintegrate into political bickering in no time. Actually, by jamming this issue down our throats with continual requests for support for the issue (<i>not</i> for you and Mark directly) you are adding to the stress of others.

Let it go. The post is still there. It's in Off Topic which is fine and much easier to ignore for those of us that don't want to get caught up in people's various political agendas.

Again, I offer my support to you and Mark.
This particular issue that you are so passionate about and that you want to donate money to, is not one that I care to be involved in .... I do not believe that this board was created to be any particular individual's political bulletine or fundraising board.

 

[anonymous]

that last anon was me, LisaV.
thought I was signed on...

 

[anonymous]

Julie, I am sorry you are feeling this way. You seem to have such thick skin that I think others assume you are a firing range.

I personally have prayed and will continue to pray for you and your friends family.

Karenb

 

[julie]

Lisa, you continue to amaze me. Please go re-read my post about my friend in Iraq before you lecture me on a "particular issue that I am so passionate about and that<b> I want to donate money to</b>..." I haven't donated jack crap to my friend's fund, not because I don't want to, but because financially I can't. Not that it's any of your freaking business though. <b>NOWHERE in my post about them did I ask anyone to donate anything</b>. Actually, as I reacall, I SPECIFICALLY stated that I posted their website, NOT so people could donate but RATHER so they had the email address to write to Melson and tell him they were thinking about him and his family/praying, IF someone felt so inclined to do so.

I don't think that to support Mark and I, anyone has to support our causes. In this particular situation, I laid out what was going on and asked for thoughts and prayers for this family. Maybe if I had specifically asked for those things for US too, it might not have been moved. If you don't agree with the situation or don't wish to offer that, NO hard feelings, there are many who did and continue to offer their support. But come on, grow up and just freaking leave it at that. Emily doesn't agree with what's going on, Steve doesn't agree, but they still sent well wishes for the family and for us. THat was more than I expected from someone who disagreed with the situation but it also shows a very MATURE person. For those who disagreed and posted nothing, THANKYOU. I wasn't asking for opinions or a debate (athough I know that's hard to avoid on this board), just thoughts and prayers.

I think anyone should post about anything that is deeply bothering them, ANYTHING, because in the long run, maybe there's someone here in their "online family" who can offer a word of advice that will hit home or some kind words that will touch them. Not to mention, in the long run if this is something that is weighing so heavily on their mind and hearts, it will affect them, their daily activities and their health.

And I don't think that posting about things that are deeply bothering someone (whether it be about a sick relative, a sick animal...) should be restricted to the OT section, because it simply doesn't get viewed that often. If people are asking for support, not just to discuss differnet names for men, help me name my dog, let's play a game.... then they have EVERY RIGHT to post it in the adult and families section.

The difference between your analogy of gay marriage and my posting about my friend in Iraq is this: You have clearly stated, <b>"should I say this belief/desire of mine is CF related and ask for supporf from all here in the forum"</b> I didn't push my beliefs about anything related to this war on anyone. In hindsight, maybe I shouldn't have posted that excerpt I did about "what's the big deal" or whatever it's called because that seemed to be the problem I guess. But you are saying you would share your belief and desire about gay marriage. That is COMPLETELY differen than what I was doing in sharing my friends situation, and asking for continued thoughts and prayers. I didn't share ANY beliefs, desires about his situation.in the initial post (as stated before, I should have left out the other part though) Just facts about what had been relayed to me. Not to mention there were many requests from members of this forum for an update.

I find it some funny that the people who disagreed and wanted the post moved were those that I generally don't get along with. There were just as many supportive posts as there were ones asking it to be moved.

I posted OT in the title. I don't see what the big problem is.

Thank you Allisa, I appreciate your kind words and your thoughts for me and for my friend and the family.

Terri, thank you to you too. You always have such kind things to say and that is appreciated as well. It's a nice feeling to know that there are many more who supported this post being here than those who didn't. Maybe Bill won't move it next time... Again, thank you for your post.

You too Sandy, your prayers are much appreciated. I am so grateful for those who do take the time to stop and read and think of others. You are so generous in that aspect and I am grateful for it. Thank you again!

Hi Karen, Generally I do have thick skin and I've put myself in the middle of things before so I guess people think it's fair to assume that I deserve it all of the time. And if I weren't so distraught about this situation my friend is in, and feeling so Hopeless that there is NOTHING I can do do to help them aside from pray, it probably woudn't have phased me. I thank you for your post, your thoughts and your prayers. I have the utmost respect for you and I believe you know why. You have a way of being so very honest while still caring, not everyone can do that. Thank you again for your prayers.

 

[NoExcuses]

i passed on the story to everyone on my email list and asked for their prayers.

i swear i wrote that on a reply to your original email but it looks like my post wasn't there.

but anyway, i support your friend 100%. i have a friend in iraq right now and another that was killed in fallujah november 2004. these guys go through so much - to blaim them for anything is nothing short of a tragedy. www.jpblecksmith.org

I'll pray for your friend.

 

[julie]

Amy, I did see your post in the initial topic. I also visited your friends website, very tragic. Is he the one with you in the pictures section of this website? I can't tell....

Anyways, I appreciate your post and your support and passing this on. It is very much appreciated.

 

[Hannah]

I'll be praying!!!

I just want you to know I think this is like a second family too. I think it should be fine to post off topic things ... if anyone has a problem with it they can skip the post. If this is like a family then we should feel comfortable talking about what we would share with our real families, it will just make us better friends in the long run (and who wouldnt need a good friend).

Hey and I'm sure your not horrible to be married to!!!! Your husband is a lucky man for having someone who cares about him so much.

Oh, and I waiting for some more cool stories of the babies. Love seeing the pictures just want to hear about your everyday adventures.

 

[anonymous]

Hi Julie,

Littlemisssilly here (LB), I haven't posted for a while as I've been awfully busy with studies etc.

I did read your story when first posted but although I didn't respond it certainly doesn't mean that it didn't make me stop and think. I'm really sorry that you and your friends are suffering so much and also that you seem to feel isolated, you have taken a beating on this board lately and I myself think that it's unwarranted. Just remember that there are some of us users in the background that although we may not post often, it doesn't mean that we don't take notice of the dynamics of this forum.

You're in my thoughts

 

[Diane]

I never go in the OT section , so im glad you posted it here . I figure as long as it is labeled OT clearly there shouldnt be a problem, ( If you dont want to read something OT then dont open it....Thats just too simple) . Like i said before, i'll continue to pray for your friends and their family. I also consider this place a comfortable homey place so i dont know why we should have all these different areas for different subjects...... This is the only area i ever look in .... I almost never even look in the blogs either.

 

[anonymous]

Look, I wish your friend(s) the best over there in Iraq, like I do all the service men and women. That being said, just because you have helped people on here doesn't nullify the point of there being an off topic section. Posting about someone you know in Iraq embroiled in a controvery in the adult section of a CF forum that deals with CF related adult topics, has nothing to do with CF related adult topics. How about if someone who has helped out people wants to post about the international rubiks cube championships and how they are so passionate about it, and decide to also post it here? How about if someone wants to post about a particular strain of grass that grows in haiti? How about we start posting a turn based chess game in here? Would it all be ok if we each helped people out?


The off topic forum is there for a reason. I enjoy it more than the adult section recently anyways. Besides, i distinctly remember Julie on several occasions commenting on other topics in the adult section that weren't related to CF (several times) "why is this here and not in the off topic forum? What does this have to do with CF?". My point regarding that last part is, you/we can't have our cake and eat it too. Either we want non CF related posts to be in the off topic forum, or we don't. I don't particularly care, but let's not start playing the "Well I help out so I can say when it's ok to post something as astoundingly non CF related as this, and then comment that others shouldn't do it when they choose to post something OT in the adults section as well".


You posted a thread about a friend of yours in Iraq involved in a known controvery in the adults section. It had nothing to do with CF. It was moved to the off topic forum where it should have been posted in the first place. Now you are whining about it. Why? Get over it.

 

[anonymous]

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

I never go in the OT section , so im glad you posted it here . I figure as long as it is labeled OT clearly there shouldnt be a problem, ( If you dont want to read something OT then dont open it....Thats just too simple) .q]



Again, not like I care, but why even have an off topic forum in the first place then?
I personally like everything to be in one big forum, and have seen what happens when a forum is way segregated. But the way things are set up here are made for categorization regarding topics/threads etc. Do we only condone OT threads in here by those we like. Do we chastise and recommend OT threads in here be moved to the OT forum by those we dislike? I think to avoid all that BS it's best either to say "Post whatever you want that doesn't break the rules and just put OT next to it", or "Anything not CF related goes to the OT forum". One or the other.