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  • mjlabieniec
    replied
    I hope you feel better soon. Lots of hugs and love.

    grouphug

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  • Alexa
    replied
    Grinch -- just wondering how you're doing. Sorry I haven't been around much lately and missed your post earlier, but just wanted to see how you're doing. Hope things are better grouphug grouphug

    Alexa

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  • KarenNielsen
    replied
    This can seem like kind of hard-hearted advice but when I was a teen with IC I took it and I m glad. I was a really drill seargent to myself! If I said, "I can't get out of bed", that hard side of me would answer right back, "shut up and get up, there are people in this world in more pain than you". Let me tell you why I recommend this...Humans have no MEMORY of pain (that is why we get pregnant more than once, heh, heh). To explain, an example...
    When I was 15, I went to see Pink Floyd on their last great tour, in a big 'ol stadium in Philly. (OK, I am OLD!!!). For you young people who do not know, no one could put on a show like Floyd. One of the most awesome experiences a child of the '70's or '80's could have had! Anyway, I went with my boyfriend of the moment and man oh man, was I in some serious PAIN!! I must have spent half my time looking for a bathroom and the other half just whining. In the midst of this, of couse, I also watched the concert. Anyway, the boyfriend got dumped for the scruffy little high school freshman who later became my husband, and life went on. about 10 years later my husband and I went to lunch with that old boyfriend. The Floyd concert came up and I couldn't say enough about it: "Man, was that awesome! one of the best experiences of my teenage years!" My 'ex' was puzzled: "but you were miserable during that concert". At first this surprised me, then I remembered my conduct. But the fact is, I had NO memory of the pain. Only of the sights and sounds, the SHOW. I am SO glad I went and suffered through it! By the time I felt better and could have gone without physical suffering, there WAS no Pink Floyd. You are very young, so please continue to have experiences that will give you a lifetime of memories. You can go out, suffer, and make a life for yourself, or stay in, suffer, and have very vivid memories of your bedroom ceiling. God bless you. --K.

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  • Britgal
    replied
    Hi Katie, you are not a whiner, we all know what IC can do to us, it makes you just want to throw something at times, I know I did at first, but like you said with a great place like this to come to, it makes a big, big difference on your outlook on life. I nearly always try and check in at least once a day to see how my brothers and sisters are doing here in the family, the only time I do not, is when my computer throws a tantrum, and then I want to throw that out of the window along with my IC. cussing take care and see you on the boards, all the best and hugs Iris hi grouphug

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  • auntiedeb
    replied
    Hi Katie, I know that elmrion takes a long time to work. I am on darvcoet for pain but if the flares get too bad, I know that I can something stronger from my uro. Neurotin has helped me tremoudnsly. I am so sorry that you are in so much pain. I will be praying for you. There is life with ic and please keep posting and let us know how you are doing.

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  • katie19
    replied
    hey again thanks for all ya'lls support, I know i have turned into a whiner about this whole issue but i am tired of being this way like all of you but it makes me feel better that i now have support that i lacked until yesterday!!! I am new to all of this and well my doctor is being strict that she only wants me on the elmiron but that doesn't help me yet b/c i just started well i need some suggestions for pain does anyone have any??? I was also wondering if anyone has had what my doctor called a parson's test and if you have was it neg or pos?? Thanks for responding and i will be back soon i want to make a habbit of getting on at least once a day so i will definitely want to chat with everyone i can, it makes me feel less lonely. well this effecting me and everyone out there on the boards it makes me want to become a doctor strictly for this and find a cure but i think it will happen one day!!! WEll MY HEART IS WITH YOU ALL AND I HOPE YOU ARE NOT IN TOO MUCH PAIN TODAY!!!! cya katie

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  • Britgal
    replied
    Hi Katie and welcome to the IC boards and the IC family. I know it feels like a bummer right now after y0u have just been diagnosed. You are not alone, I felt exactly the same, but you will feel better once the right meds are found to help you out, and there is always a lot of support and caring people on the boards that can give you good information and support, and the network is wonderful with lots of other information that you might need. Their newcomers kit is awesome and I got that after I was first diagnosed and it helped me a lot. After a while life seems to progress and hopefully you will be able to enjoy the things you used to do, it just takes a while to adapt to living with IC, and like I said believe me we all know how you feel, take care and look forward to seeing you on the boards, Iris hi grouphug

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  • auntiedeb
    replied
    Katie, Hi and welcome to the ic network. There is alot of support and caring on the boards.

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  • ICNDonna
    replied
    Katie: To check for private messages, scroll to the top of this page and click on "my profile" --- you will find your messages there.

    Donna

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  • katie19
    replied
    how do i check my private mail?

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  • katie19
    replied
    hey i am new and just diagnosed with this hellsent disease! i feel the same i have no life outside of sleeping, working and going to college. I have no social life outside of my bf and i am quite jealous of him b/c he can go out with his friends and drink and do whatever when i am in bed wishing i could do the same or wishing i had someone to do things with besides him but it seems no one understands they say they do but no one does unless they have ic too. Will life ever been normal agian will i be able to drink and go dancing? or am i stuck with my tv in my house forever?

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  • Christa
    replied
    Hi-

    Sorry you're feeling so bad right now. I have the same feelings. Sometimes I have to bite my tongue when someone from work is complaining about a hangnail or dandruff or something like it is the end of the world. I want to scream 'Hey! I have IC and it's a million times worse than your stupid head cold or stomach cramps so shut up!!!!' Well, that's what I say on the inside anyhow wink

    Take care
    Christa

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  • JAF
    replied
    Grinch,
    It is not whining it is the plain truth. I had IC in high school. It is the pits. I remember not riding the pep bus to games if they were too far away because of the bathroom issue. I remember when a German class went on a field trip. We stayed overnight for several nights and I had to come back early because I was having trouble, now I know it was a flare due to IC. So please come vent anytime you have to. It is an adjustment to have IC and especially in high school with everything that goes on in that time of your life. Hope you are doing better soon.



    Jolene grouphug grouphug

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  • Teri
    replied
    {{{{{Grinch}}}}}
    I know where you are coming from Grinch....I'm WAY past high school age but my life is the same as your's. I never make a commitment anymore. I always say "health permitting" and if that answer isn't good enough than I say "NO".....The one thing I am all done saying is I'[m sorry

    I didn't ask for any of this crap and I've spent that last 7 years telling my family "I'm sorry".....BS!!!!!!!!!!!!! IT's not my fault I"ve got it and if others can't understand then I turn them OFF!

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  • auntiedeb
    replied
    grouphug grouphug grouphug

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