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At least it isn't AIDS

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  • #16
    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]" />
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


    • #17
      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.


      • #18
        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.


        • #19
          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]" />


          • #20
            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."


            • #21
              "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.