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  • no time for me

    i'm a mom of a 21 mth. old boy and now i'm 23 weeks pg with a girl. i'm 27 years old and been dx. with Ic since 2003. i have talked to so many girls with ic and i remember when i was first dx. i looked all over for advice and now as a mom i have noticed that i don't have time to worry about we that all i do is worry about blaine and this baby to be. i try to tell the girls that i talk to not to spend all there time on the ic but to live there life. Is this bad advice or good advice????? I mean i have to admit that i tried to start a support group in 2005 when i was pg with my son and it did not make up so i sort of lived my life and not a life around Ic. Which is a good thing right??? About once a year i have a flare and end up at the ER but for some of the girls i have talked to they are at the ER all the time. Well i guess i could go on and on about me but i guess the real reason for this blog is

    1. Is it Ok for me to tell the girls that they don't need to spend all there time checking out different sites about IC

    2. Are other moms out there just living there life and not dealing with the Ic on a day to day basis

    3. any advice on what i should tell the new girls that call me
    (i wrote a tread) saying i might try to start another group soon
    i hope i have time for this and be a mom of 2 under the age of 2
    [email protected]
    DX. JULY 2003
    CYSTO IN JULY 2003 & SEPT. 2005
    [COLOR=Indigo]MOMMY OF 2

  • #2
    I do think alot of us do live our lives beyond IC.. We really have no choice if we are mothers or wives or has a day to day job..But I also think if you dwell on one thing all the time it will make you worse..Maybe its because the more you dwell on it the more depressed you get and I know for a fact IC and depression do not get along..I was in a major depression when I was dg..

    I know I come here for support not just on IC but everyday life, these people here have helped me in so many ways that does not even have anything to do with IC..I also come here so I dont feel alone. It helps to know that people understand..Thats one reason I said it would be awesome to get a support group going for us here in the south..You know you could even ask at the doctors office to post a flyer about a support meeting...Well talk to you soon...


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    • #3
      Bridget, I was so grateful that I have learned about IC networks especially this one. The things I was going through no one understood, and I could not figure out what was going on with me and why do I continue to hurt. Really I begin not to trust doctors and any professional help, because they just did not get it and understand the misery and pain I was going through. I knew in my heart something major was wrong with me but no one took it seriously. So what do you do? Give up. There is just a comfort to know people do understand and you are not going to live the rest of your life of people not believing you and that you hurt and that you can get help. Maybe not heal but help with it. I do understand about consuming your life with it but you have an opportunity to help many that is getting so stress out and need help.

      Sending hugs, Trishann


      • #4
        i try not to let IC run my life......but it is always in the back of my mind and i am always making sure i don't overdo myself b/c i dont want to suffer for days.

        I am not ALWAYS doing research but i do like comming here and talking to other people who understand how i's also nice to know that other people who are new to IC can benifit from my makes me feel like i'm not just being punished to know that at least i can help someone else be less uncomfortable, because i have already been there and can give advice that otherwise they would not have!

        and i think it is important the people do check out research and medical information on whatever condition they may have to they are fully informed on their health care.....too many docs now say "take this and you'll be fine" and don't take the time to treat their paitents like human beings with feelings and a brain between their ears!

        also because i am educated on IC i can share my info with other medical professionals who may not know as much about IC, and while i may drive some docs crazy no one will dare tell me "its in my head" "it can't possibly be THAT bad" or take a "lets wait and see if it gets worse" approach and send me packing in pain!
        wife to Jeremy
        mom to Emma (3-8-05)
        and Natalie (7-23-07)

        Meds i'm currently taking:
        Lortab as needed for pain

        Meds that did not help:
        Detrol LA
        Lexapro (caused urgency)
        Amatryptaline 10mg once a day (helped IC but made me feel like CRAP)


        • #5
          I don't know, Bridget. If you can forget about IC most of the time, then I would be inclined to think that your symptoms aren't that severe. There is no possible way for me not to think about it every day, because every day I have to arrange my plans around how I feel, and that varies.

          But all of us here have lives beyond the ICN. I was actually a little taken aback by that comment. For example, even though I have continuous, daily pain and frequency, I still run the local swim and dive program; I still help my daughter with homework every day and spend time talking to her, preparing meals for her, etc. I am still my husband's wife, my parents' daughter. I still follow the news from both France and the U.S., carefully, and may react accordingly by choosing to vote or not, by sending money for particular causes that attract my attention. I still talk on the phone too much; I still worry about how my hair looks. I still watch every Yankees game I can and dissect them later in conversation with my husband and/or my father. I mean to say, I am still "alive" outside of IC and the ICN, but I enjoy spending time here with people I like, and I think it's essential to be as well educated as I can about the conditions that affect me.

          So, I don't know what you should tell people -- probably that they have to figure it out on their own.
          Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
          Wishing you happiness and good health, and all the best out of life.

          Peace, Carolyn

          Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

          On the Beach with IC


          • #6
            I think as mothers with IC we have no choice but to trudge on and think of ourselves and IC last on most days. I know I usually always have to put me and how I feel on the back burner most days. My children didn't ask for a sick mom they were dealt it. I usually always deal with myself last and like you give the same advice. Sometimes getting up and dealing with other things and being busy can help keep your mind off of things with IC.

            Sounds like your gonna be a great mom to these 2 littles ones. Good luck


            • #7
              There's a huge difference between "thinking of IC every day" and "allowing IC to rule your life." I do spend a lot of time on this site, but when I log off my computer, IC is not my primary thought. I have learned that when I feel good, I can enjoy the day without worrying about whether there will be pain in the future, but I still know what I need to avoid in the way of activities and diet.

              When someone is new to IC, the best advice I can think regarding the internet is to visit reliable sites, such as the IC Network and the ICA --- and, most important, beware of the large number of sites offering "cures." People are becoming more aware that there is a disease called interstitial cystitis and along with that come the quacks and money-hungry frauds.

              Stay safe

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              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

              Anyone who says something is foolproof hasn't met a determined fool


              • #8

                thanks guys,
                i mean i knoe i have Ic and then you hear about the ones that have lots more problems than i do. Some people can not handle the pain and some can. i get calls all the time and i had one girl that asked me if my dr. would give her pain meds. I talked to her and all she wanted was some meds. to cover her problems, I sort of cut strings with her. Then you get the ones that want to know if this or that happens to me, and i tell them that EVERYONE is different. I have a few questions i seem to ask all the time and they are.
                1. when dx.
                2. how old and where do you live
                3. how did you get dx.
                and then the 4th question is about med.

                i think about my IC everyday but i don't think about it ALL the time, I mean I would go nuts if i did that. See right now i'm thinking about it because i'm so sore but i don't know if it is from the baby or from the IC and that is the hardest thing about being Pg that question hits me all the time when i start hurting. My OB is going to get an ear full about my sex life or my no sex life!! well thanks for all the support.
                BRIDGET L. PIGEON
                [email protected]
                DX. JULY 2003
                CYSTO IN JULY 2003 & SEPT. 2005
                [COLOR=Indigo]MOMMY OF 2


                • #9
                  personally I think you gave great advice. I am 41 and I have a daughter that will be 19 and my nephew (I have custody of) that will be 2, both have their birthdays in August. I go about my life as normal as I possibly can. When my daughter and husband don't have me running, Jake dose.
                  Like I say at the bottom of my sig. I have IC, IC don't have me,
                  'The will of God will never take you where the Grace of God will not protect you.'


                  • #10
                    Hi, in the beginning I was so grateful to have this site, I learned alot here. My doctor would listen to the suggestions I had from this place, he was great.

                    I think it's ok to warn people not to live their lives around IC, but to still gather as much info as possible. The info and suggestions of others really help to make life easier, and can help us deal with the pain, frequency and urgency.

                    So many people don't understand what we go through with this disease, I think it's great people come here for info.