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  • night owl
    replied
    I am so thankful to have this site to come to ,even if it's just to read sometimes and not to write. I have never read anything that was not in some way useful to me and nothing has ever scared me or depressed me. Having IC for 12 years I also have had some wonderful remissions...and also nasty flares.I also feel it's important to know I am not alone when my pain is the most severe...that's so comforting and these posts are an integral part of this support system for me! I hope there will always be a place for them.
    Thank-You All,God Bless <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

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  • Jo Ellen Cullins
    replied
    This reply may also fall under the category of IC debates but for me IC is too broad of a term to encompass the wide range of symptoms and degree of severity. For some it is frequency and urgency and others (but not all) like myself it is dealing with the Hunner ulcers, severe pain and the inability to tolerate the available medications and treatments that are sometimes refered to but leave me with the "It must be nice" placebo effect. It was through reading some of Teri's posts that I realized that I'm not by myself in this category. I know that I have learned a great deal from this board even from the areas that I can never apply to my own individual life. Thank you, Jill, for giving us this forum. Jo Ellen

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  • vm
    replied
    Yeah, I definitely wouldn't want the people with more severe IC to go off and forget about the rest of us. I would hope that the one board might just be a little refuge for them for the days they need support from other people feeling like they do for as long as they have.

    And I know newcomers who do have severe IC, but may only be "new" to our site, might not benefit if they can't get into the severe board b/c they don't have enough time logged in on these boards...

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  • JAF
    replied
    I agree that this is a good idea. I do have some concerns though about the criteria to get on the board. I for one am not nearly as disabled by the disease as others but I want to be able to read and participate in the boards. I am afraid that those who are real sick will just go to the other site and we will lose their good insight and if I am not deemed able to participate because I am not ill enough they may lose some perspective from someone healthier that may be of benefit to them. In my case, I have had this disease since 1975 and am fortunate not to have had the pain that has just consumed the lives of some of you but boy the frequency, and urgency has been a nightmare sometimes. So here I am not on the board but a few months, not really ill, but I would like to be a part of what you are talking about doing. Even if it is nothing more than reading most of the time.
    Jo

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  • vm
    replied
    I just read one of the boards that I have never opened before and saw that there has been some discussion in the past few days about challenges in presenting stories on boards, etc. That really wasn't what prompted me to suggest this. I had never opened up those threads before today... Really. I read all that and thought, "Oh, I wonder if people think that is why I brought this up?"

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  • Jazzy Baby
    replied
    I also think that is a great idea. Jill know's all of us, especially the ones that have been through the mill and back. I think that she can make a good decision on who should be on this board if it were made. Maybe not the criteria of how sick, but how long you have actually been a member on the boards. I know that I feel sick most of the time, if not all, but sometimes I dont want to post that I do, because I feel like I am whining. If we had a board that we could just talk about how we feel, and know that I am not the only one that feels this way all of the time. Just my opinion. I have to take my dog to the vet to get fixed now. Bye bye!

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  • vm
    replied
    Gosh. Jill, I hope you didn't take my suggestion as a criticism of how the boards are set up. I don't think you did, but I want to make sure. I think they are wonderful!!!!

    Yes, I think a password protected board would work or just a giant red lettered warning to newbies saying that the board will have details and stories that might be a little bit scary, blah, blah, blah... Knowing myself I still probably would have read it anyway as a newbie, but maybe I wouldn't have. [img]smile.gif[/img] Maybe knowing that most people don't feel that way forever might have helped.... I dunno.

    Thank you for considering it. I kept thinking that if I felt really bad I would desperately want to know I wasn't alone. I recently read posts from a few people who are having it really hard and I wanted them to have other people who feel that way to commiserate with, get support from, etc. And I'm not saying they can't get support here the way it is now - I just wondered if they might feel freer (is that a word?) to spill it in a place where newbies might not go or where they are at least forewarned...

    You do a beautiful job here - this place has saved my sanity. I'm just throwing out ideas.

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  • Kara
    replied
    Apply meaning like a job applicaton? How do you insure that we will make the cut? What crieterion are you basing this application on? What if we don't get accepted and fall through the cracks? Who decides weather we belong or not. This sort of feels like a club membership type of thing. It's kind of scary, what if the people that need to get in can't and then where do they go if they need to talk? Maybe I am just misunderstanding your idea? Can you explain further, I think it might work, I just would like to know how it would work........New people that are "the real severe cases", while waiting for the application to go through, they won't have a place to talk about how they are feeling that day?

    I guess I would need some clarification on how this works?

    I know you are trying so hard Jill, this must be so hard and taxing on your already busy day. I just had some questions about that, would it be like your moderator board, or the dr's whom have IC board, if so I think that would really work....I think you are handling this site so incredibly well. You are one of the strongest most dedicated people I know! Thank you so much for everything you have done! You are a saint for putting up this site and working so hard to make it right for everyone.

    Just throwing my thoughts around,

    This will work out somehow.....

    Kara

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  • Teri
    replied
    Great idea Jill.....and, how about needing our password to log in everytime we come on to the site, period? I know it's an added pain in the butt but there are times that I don't feel free to talk about things, especially sex things because I'm afraid my husband or my grandson will be snooping on my computer.....my husband knows better and I know in my heart of hearts he would never do that BUTTTTTTTTTTT a 12 years old grandson is pretty darn sneaky [img]wink.gif[/img]

    Leave a comment:


  • icnmgrjill
    replied
    Hmmm... Hmmmm. How about if we had a password protected board for patients who are extremely ill? They could apply, in advance, for privileges and we could make sure that newbies are kept away from those discussions??

    Jill

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  • Kara
    replied
    Kim,

    You have a wonderful point! I hear you! Unfortunately I was one of those ones who had it bad and I feel really bad about scaring newcomers. I was selfish when I was so sick but now that I am feeling better I want to reach out to all of those whom reached out to me when I was so sick.

    You stated your feelings well! You have a great idea!

    Best wishes and I hope you don't have to get that bad again!!!! Bad IC stayyyyy awaaaaaaaaaaaayy!!! From all of us!


    Take Care,

    Kara


    Kara <img src="graemlins/blink.gif" border="0" alt="[blink]" /> <img src="graemlins/hi.gif" border="0" alt="[hi]" />

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  • yvette
    replied
    Hi Kim
    That is not a dumb idea at all. But I think HOW is the question. People aleady don't read the posting guidelines as it is.

    But I agree with you, and I am SO GLAD you posted about being a bit shaken as a newbie. All those veterns' (myself included) topics and conversations get really into the nitty -gritty sometimes.

    Were you thinking something along the lines of a "wading pool" for newbies? Like its own set of Message Board topics with its own Today's Active Topics? And then when one is feeling up to it and more comfortable, the newbie jumps into the bigger "pool" with the Veterans....

    I think its a very intersting you brought up, and is really important to ease newcomers into the whole IC community.

    y, [img]smile.gif[/img]

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  • vm
    replied
    Well, I guess those with more severe IC are feeling supported enough on the existing boards and that is awesome! I am so glad to hear that. [img]smile.gif[/img]

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  • vm
    started a topic not sure... thoughts?

    not sure... thoughts?

    I know there has been a lot of talk in recent months about not scaring newcomers with stories of unremitting pain, etc. and I totally agree with that. I am someone who used to log off from this site bawling b/c I got so worried I would never feel better.

    I just got finished with a course of antibiotics for a bladder infection and was reminded of how bad this thing can be. Well, not even touching how bad it is for some. I have also recently read some posts here from people who are living day in day out with no relief.

    Should there be a board (not away from here - I mean within our system) for those who are in that small percentage who have it really, really bad? Do they feel like they have to hold back on the boards for fear of scaring others? Do they feel more alone when they are reading from people who are generally doing well?

    I just started thinking about this after feeling so bad for several days - that I would really want to be able to come here and talk to others who are having it as rough as me if my IC was severe. To know that I am not the only one who feels terrible almost 24/7. Reading mostly posts predominantly from people who are doing well might depress me.

    I'm just throwing it out there to see what others think. Maybe people who have it worse don't want a board to go and let it all hang out. I don't know b/c I am one who usually feels good. But if there was a separate board it could have a "warning", if you will, for newcomers so they wouldn't be shaking in their shoes after reading it or they could just not open it?

    And, just so there's no misunderstanding, I am not suggesting that those of us who have it worse be shuttled off to some other board - NOT AT ALL!!! Not my point. I just thought it might be nice for them to talk to others who are feeling as bad as they are so they don't feel alone, but in a place where they don't have to worry about scaring others?

    I don't know, maybe it's a dumb idea. I am just typing off the top of my head here. I almost didn't post this, but it's been on my mind so I thought I'd throw it out. I guess only the people with the severe IC could say whether or not it's a need or not. And maybe they are already feeling supported enough as it is. Which is great!
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