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  • mrm
    replied
    "Finally, people feel the same way!! My mother-in-law said "at least you're not in diapers!" and made another comment later on about a lady needing "DEPENDS"..literally could have snapped her neck right off her spine! People say "so, you gotta pee, then pee" or "we've got bathroooms!" Did it ever occur to anybody with a sliver of a brain that since I can no longer work(i am also only 31), that this must be a serious disease?!"

    Nice. I'm 28 and have been in diapers for about 8 years now. And for the record I would rather have AIDS or Cancer. It's true with a terminal illness chances are good that in 5yrs you'll be dead or in remission, either way you won't be suffering. I found a new Uro (not very promising) and finally broke down and went to a pain management center on the 19th, they gave me some hope.

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  • buana1
    replied
    Had Donna not said he might have been trying to be supportive, I might not have bought his explanation. It's so easy to see the negative sometimes. This friend is always supportive, which is why his comment hurt me so much. He clarified what he meant, and we had a long talk.

    I wish everyone in all of our lives could be as understanding and easy to talk to as he is.

    I have another close friend who always reminds me that someone else has it worse. I've just come to accept that she does care about me, but cannot understand. And she thinks that I need to be reminded that things could be worse. In other words, I just tune her out. I wish she could be "reached."

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  • Shelleynz
    replied
    My answer to "at least it won't kill you" used to be "I wish it would, then at least it would put me out of my misery." I meant it too. I was suicidal with pain and insomnia. I think people found my response a bit shocking b/c always shut them up. <img src="graemlins/lmao.gif" border="0" alt="[lmao]" />
    Shelley

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  • NB
    replied
    Yea, those Detrol commercials aren't really about IC but over active bladder (two separate things). But still, people with over active bladder still have other problems arising from having to pee alot than just having to pee alot.
    They kinda make it seem like no big deal on that commercial. The jingle they sing for it makes it sound like the diagnoses is light and funny and something that can just be shrugged off.

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  • LT
    replied
    Teri, I couldn't have said it better myself.

    Sometimes it feels like I DID already die, the person I was is totally gone. This DOES take a toll on friends and family.

    My mother died from cancer when I was 17. It took until my late 30's to remember her any other way but ill. And that was a disease that had an ultimate end. In many aspects, I think cancer is easier to deal with than this never ending nightmare--for the patient, and for the friends and family.

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  • Teri
    replied
    I sometimes think I am turning more b****y with my IC....when people say "at least it won't kill you" I can answer 'how do we know that?' Cold answer but pretty cold question too.

    Hubby took me out of the house for the first time in 5 days yesterday. I was so sick that I could literally NOT STAND UP STRAIGHT because of pain. But, I looked great [img]mad.gif[/img] [img]mad.gif[/img] [img]mad.gif[/img]

    somedays it just so much easier to lock the doors, pull the sheets over my head and refuse to answer the phone.

    today when I ask someone how they are, I make damm good and sure that I have time to listen to their answer because I refuse to blow others off as I've been blown off.....

    thank God for the ICN <img src="graemlins/blink.gif" border="0" alt="[blink]" />

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  • nccarol
    replied
    I have come to the conlusion that most people I know think it's just about peeing alot, like the Gotta Go-Goota Go comercial, I hate that comercial. They do not comprehend the pain and deterioration of quality of life that goes along with it, nor are they interested. It is not just a need to pee, it is intense pain before and most often after. They compare it to incontinence or like one neighbor who had a bladder tuck for incontinence after age or giving birth and thats what they seem to compare it to. Those women are working full time, raising families and I guess they feel why can't I. I am so tired of explaining I just don't I avoid it. <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

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  • lainie
    replied
    Finally, people feel the same way!! My mother-in-law said "at least you're not in diapers!" and made another comment later on about a lady needing "DEPENDS"..literally could have snapped her neck right off her spine! People say "so, you gotta pee, then pee" or "we've got bathroooms!" Did it ever occur to anybody with a sliver of a brain that since I can no longer work(i am also only 31), that this must be a serious disease?! <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> Thanks for letting me vent and I will be hear to listen to everybody else's rage-fests!! Lainie <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

    Leave a comment:


  • Lauren
    replied
    Dear Buana -
    When I hear a comment like this ---for ANY illness/disability----I hear the (I think)
    implicit messsage, STOP TALKING ABOUT IT.
    Or in other words - the stiff upper lip syndrome!!
    There is not only a mixed message, but an
    implied disparagement of your pain/frustration, etc.
    Great that you were able to talk to your friend.
    sending HUGS, Lauren
    <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

    Leave a comment:


  • NB
    replied
    If a friend ever says "at least it's not AIDs" to me, i would feel hurt and alone.

    Yea, at least it isn't aids, just because it's not life threatening doesn't mean you should always grin and bear it.

    If someone says that and tries to play it off like they are trying to comfort you... i'd say they are full of s**t!
    If they really meant to do so, their version of "at least it's not aids" would sound more like, "I'm sorry your in so much pain, i'm glad it's not life threatening" That's more like it.
    But don't let those people get to you, i know it's much harder when it comes from a close "friend" <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

    Leave a comment:


  • buana1
    replied
    Thank you for all of your replys. He and I had a long talk today and I think as Donna said, he was trying to offer confort.

    I am so grateful IC is not fatal. There is just so much to deal with, both the physical and the psychological things --you all made some good points. Thanks.

    Leave a comment:


  • Teri
    replied
    I get VERY UPSET about the "well at least it's not" remarks......sorry folks but with this disease I and my family and relationships will suffer until some miracle happens and there is a treatment for ALL ICer [img]mad.gif[/img]

    When you loose someone to death, they are gone, the grieving process begins and sometimes it takes many years to get over the loss of that person. Well, I'm sorry but my family has been grieving my loss since 1994 after a dr butchered me. And, there is no end in site. My husband has lost, my children have lost, my grandchildren have lost and most imporantly, I HAVE LOST <img src="graemlins/cussing.gif" border="0" alt="[cussing]" /> If I would have died in 1994, the grieving would be finished by now~

    I am only 51 years old and if I am not in a wheel chair in the next 4 years it will be a total miracle. Yep! You bet your bottom dollar it will be to top model and you can also bet your bottom dollar that if someone says "well, you're lucky it's not" I may use an automatic control and run over a foot or two!

    Leave a comment:


  • nccarol
    replied
    I have heard everyone of the comments of false support and supposed comfort that now I am pretty crued and blunt and then walk away. No it's not aids or cancer cause if it was at least by some miracle I would croak and die and not have to live this hell, and walk away. Sorry I'm in a lousy mood and tired of those ignorant people out there. <img src="graemlins/cussing.gif" border="0" alt="[cussing]" /> <img src="graemlins/cussing.gif" border="0" alt="[cussing]" /> <img src="graemlins/cussing.gif" border="0" alt="[cussing]" />

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  • ICNDonna
    replied
    You are right, Maureen. Some people also got AIDS from blood transfusions not too many years ago. And some babies of infected mothers are actually born with it.

    Donna

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  • Maureen
    replied
    I would like to make one small comment AIDs is not preventable for some people. I have a friend who is a hemophiliac who got AIDs from blood products that are used to keep him alive. In the early 80's blood was not screened.

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