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  • kari1980
    replied
    Jube,
    I can already tell what a caring and compassionate person you are, and I'm so sorry you were diagnosed with this. Your only 26 ( the age of my son) so I know how hard this must be for you. It is scarey when you are fist diagnosed because of the unknown, but I promise, the more you learn and understand and figure out the best ways to manage this, you will become more at ease about it. I'm not going to lie, you are right when you say that your life will be different with IC then without, and you are not horrible for saying or feeling that, we all do at some point, BUT it doesn't mean that you still can't have a wonderful and fulfilling life to. You will just have to figure out what works best for you and will discover lots of little "tricks" to get you through by reading posts from other people who have been there. It's going to take time and a LOT of patience. And no, you may not know everything now, and may never know everything (I've been diagnosed for 13 years and I feel like I'm just starting to figure things out only after discovering these boards recently!! LOL) but I can tell by your words of compassion that you will be able to offer support and help to other people very soon. There will always be someone newer then you just coming on, and will have a question that maybe you just discovered the answer to and will be able to share it with them. So hang in there, and try not to let it consume you right away (I know it did with me at first and that wasn't good). So take a deep breath and deal with it as you can, baby steps. Feel free to PM me anytime.

    Kari
    PS- Christine, I'm sorry your having a rough time right now, I am too. Lots of stress going on right now with me also, which adds to my never ending pain! I hope your feeling better soon.

    Leave a comment:


  • Kara29
    replied
    One hour at a time.....

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  • jubejube
    replied
    Thanks everyone, yet again...
    I truly have been dealing with depression, as all of this started 5 months ago, and has been a frustrating journey of not knowing what is wrong/if and when i would ever get better. Being diagnosed with IC did not necessarily give me the feeling of releif i expected upon diagnosis. I was always hoping for a "oh, you have this, and so you will just need to take this and get all better" kind of diagnosis... and when it didnt happen, i was crushed.
    Kari, I dont mind you asking... Im 26 years old. Which has added i think to my depression, as I am feeling as though I am not going to live as happy as a life as i might have, without IC. Is that horrible to say? I feel horrible saying it, because so many people in this world are suffering more than I am. My uro told me he doesnt want me sitting up all night worrying about my IC, and that we will treat this... which is soothing, but at the same time, this has been more than overwhelming.
    I am so looking forward to meeting people on this forum, and offering as much support as I can to anyone who needs it. I am new, so I dont know much, and cant offer much more than a warm wish and hug right now. Al though I wish i could come to everyone's homes, and give them big hugs and make them feel better
    GriffsMom, Im so sorry to hear that your symptoms are getting worse, but please know that your kindness has really helped me, and has shown what a wonderful support system I have found. Thank you so much.
    I can only hope that your symptoms get better soon.
    My thoughts are with you!

    Leave a comment:


  • GriffsMommy
    replied
    I agree with Kari. I know that I don't always FEEL positive but I always try to post something positive when someone needs some help because I know that the support will be there when I need it.

    My symptoms have been getting worse again, not worse than the beginning but worse than they were say a month ago and I'm having a hard time but it makes me feel good that we made you feel welcome and you found a place where you can get some support. I know you and everybody else on the boards will be there for me when I need it.

    I hope you get a good treatment plan in place too but remember it takes time and IC is soooo different for everyone that it may take awhile for your uro to find the right combo of things that will work for you and get you feeling better.

    Leave a comment:


  • kari1980
    replied
    HI Jube,
    Dont' feel silly for being down and depressed, we all have experienced that many times ourselves over this. I'm happy to hear that you have a lot of supportive people around you, that is such a big plus for you. And your right, no one can understand this unless they are going through it themselves, that's another thing that takes some getting used to. May I ask how old you are? I know when I was first diagnosed I was feeling all of the feelings that you are feeling, you will go through many many emotions. I think your question of how everyone stays so positive is individual, but I also think that it mostly to is everyone trying to support everyone else who is having a rough day or going through a rough time at the moment because we all understand how much support someone needs dealing with this, but I think most will agree that we have ALL had our days where we didn't feel so positive and were the ones needing the support. So it's wonderful to be able to come here and get it because as you said, NO ONE else can understand. So I'm sure soon, even if your feeling bad, you will be positive and supportive to someone else who may need it at the time. Everyone finds their own way of dealing with this and you will to, it will get easier the more you learn and understand about it.
    Have a good day,
    Kari

    Leave a comment:


  • jubejube
    replied
    Thank you

    Thank you everyone sooo much for your posts! You almost had me in tears at my desk (thats right, i sneak into this forum at work too!)
    I am trying my best to deal with this diagnosis, and not go out of my mind with concern. My family doctor and urologist are both very understanding and supportive. I also have a wonderful boyfriend, and family and friends. However, as I have found, no one really understands what you are going through, unless you have IC. Im praying that I can find a treatment plan for me.
    Thank you so much for all of your support.
    Just one more question. How do you all stay so positive? Many of you have many more symptoms/diagnosis than i, and you are all so positive and supportive. I feel silly for being so down and depressed. How do you all do it? Its amazing... and inspiring.

    Leave a comment:


  • mary124
    replied
    Hi -- I would like to give you another Texas
    Glad you found us. Like the others have said, don't let any of this scare you as we are each individuals and we are in different degrees of this illness.

    I am on the boards on and off all day long like many here, as sometimes work is very slow or heaven forbids I get bored out of my mind!! So I try to help out here as much as I can. Post when you can. Again, Welcome.

    Leave a comment:


  • TexasHoney
    replied
    Hello, Jube To the ICN Family. I sorry to hear you have IC but I'm glad you found us. This is a very informative website. Everyone here is very friendly and supportive. We all know what you are going through. I hope you find a treatment plan that works for you.

    Take Care

    Leave a comment:


  • jillyg5661
    replied
    Adding my welcome and support too! Feel free to PM me anytime. I was diagnosed on January 7th 2007 a day I wll never forget. These boards have been a life saver, wealth of information and has many new friends for all!

    Hang in there!

    Jilly


    Leave a comment:


  • ICNDonna
    replied
    I'd just like to add another to the IC Network family.

    Donna

    Leave a comment:


  • GriffsMommy
    replied
    I'm so happy that you found us. As many of the other ladies here will say, I don't know what I would do without this website and the support of everyone here. I have a very loving husband and family but no one really understands what we are going through except for the rest of us that have IC.

    I have made some great friends here as many people have, you will find there is always someone to lift your spirits when you're having a hard day. Don't worry though about your symptoms getting worse, from what I have read MOST people do not get worse once they are diagnoised. I still feel pretty crappy some days but I don't think I'm any worse than I was in the beginning.

    I am on the boards alot as many of us are (I sneak on at work when I'm bored because we're slow, lol ) and just like Roxie, or probably most of us you can PM me anytime if you need to talk.

    Leave a comment:


  • dg2901
    replied

    Dont let any posts on here scare you. Like mentioned, its all individual-what one person experiences might never pertain to you.
    You'll gain tons of knowledge that will be beneficial to you--we promise!

    See ya around the boards..

    Diana

    Leave a comment:


  • lan
    replied
    Hi Jube. It's very nice to meet you. I was diagnosed in March following what I thought was a UTI that would not go away. My symptoms have gotten better since I was diagnosed so please don't assume that your symptoms will get worse. Hopefully, with treatmeant, they will get better! Like Kari said, I find it best to just take one day at a time. I visit these boards almost every day so that I can educate myself on what treatments are working for others and so that I feel less alone in all of this. You are so right about the women and men on these boards - they are so thoughtful and kind. I often wonder to myself if kindness is one of the symptoms of IC I am keeping you in my thoughts and hoping that you will be feeling better soon...linda
    Last edited by lan; 06-12-2007, 01:25 PM.

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  • kari1980
    replied
    Jube,
    I'm glad you found these boards so soon, it took me about 13 years to find out about it! I really wish I knew about it sooner. I'm sorry that you've been diagnosed with this, and yes as much as the boards are extremely helpful, it can also be overwhelming and frightening at first also. But try not to worry about that and just take it one day at a time. You will most likely in time start to have lots and lots of questions and these boards are the best places to get the answers because everyone else is in the same boat and has either been through or is going through whatever you are at the time. So it's really nice to be able to share with people who really understand. But don't get too consumed with it and take it slow because it can be alittle scary to. I wish you the best of luck and try to find whatever works best for you, the diet is probably the most important thing to start right away, and then take it from there.

    Best wishes,
    Kari

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  • sandramac
    replied

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