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My Life With IC

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  • My Life With IC

    I miss me. I don't even know who I am anymore. It's the bathroomm, the toilet, the toilet paper, the feeling of the carpet against my bare feet in the middle of the night.It's the sound the toilet makes when I sit down on it.It is the first thing on my mind when I get somewhere."where is the bathroom?" I go, and then I think to myself. I need to go again.So, I continue on my way. But there is this pain. I am all to aware of my bladder. It is full again. I JUST went. I don't want to go again.Has someone chained me to the bathroom? Who is this person? I am the girl who wakes up on her day off, showers and goes out. To the mall, or to the park, maybe to san Francisco today? I can go anywhere and do whatever I want. Finally, I am a grown woman. I am in my early twenties and have never felt better. This is me. I am not disabled. I am not sick. I do *not* have a disease. This was not in my plan. I am going to advance in my career. I am going to have more kids. I am going to go on a nice long drive to Monterey and relax by the beach for hours on end. Or...I was. I was going to advance in my career. I could have had more kids. I may have gone to Monterey.But, I haven't. I can not. I am sick. And I don't even know me anymore. I do not live. I exist. I carry on. I keep my head up. I smile. But, I am not me. I don't know who put this illness in my body. They didn't ask me. They never thought to see if I was ready to give up me. My life belongs to the disease. It consumes my very being. it drains me. I am tired, I am weak. I never invited it in. But, I ask it to leave. Leave me and my family alone. My daughter needs me. And I need me. I want to explore the world in which I live. Instead, I have fallen victim to my own body. I am living in my worst enemy.Me.
    Lisa Marie

  • #2
    Dear Lisa Marie,

    I just read your post and I have to tell you, it brought tears to my eyes... I feel the same way sometimes, but to hear someone else suffering so much makes me terribly sad..... I know it is frustrating, believe me, I have had this disease for 8 years, I am 27 years old and trying to plan a wedding. I can barely have sexual intercourse, I can barely eat anything, I am always depressed, but I TRY to have some hope. I know it seems like a dark tunnel with no light and the end, but please try to have some faith. I feel very sad for you, as well as for myself and all the others on this website. I pray for us each and every day. Just hold your head up and remember, you are NOT alone.... If you ever need someone to vent to, please feel free to e-mail me at [email protected] We have to believe that something will help us one day. I am unfortunately one of those people that have not experienced ANY relief and, believe me, I have tried EVERYTHING. I find myself crying on the toilet bowl at all hours of the night... Please keep the faith.


    Dana Ann


    • #3
      Lisa Marie,
      Where do you live? It sounds like you live in the bay area? We have a small support group for 20something ICers. Let me know if you're interested.
      take care,
      I think our next meeting will be Jan 20th.


      • #4
        Lisa Marie,

        The doctors' and my friend/coworker in the bay area were the only salvation that I had for IC,(yes, I was in my 20's then too) I was really beginning to feel like I was crazy, when I would have flares, and go to the doctor, and be told there was no infection nothing. Thank God my co-worker had the disease, she showed me an article, that led me in the right direction with a gynocologist, and a urologist.

        There are many good doctor's in the bay area, I lived in Oregon and suffered for 10 years with no answer, and the doctor that pioneered DMSO practices right there, up on the hill at the medical school.

        Diet, exercise, lots of water, and the correct treatment plan is what you need.

        I am so sorry that you are in so much pain, yes it really is a horrible disease, and it sucks!

        Melanie is right, a support group helps tremendously, I went for awhile, then my flare left. So I stopped going, I know it hurts so bad, and ruins your sex life, its like you become obsessed with that pain and pressure, and thats all you can think of.

        Believe me, I have been there, it will get better, for you, sending you many (((((gentle Hugs, and healing hugs)))))))) if you need to talk, email me [email protected]

        Take care

        Ruth : )

        [This message has been edited by Ruthie (edited 01-10-2001).]


        • #5
          i thought that was so beautiful!... like a poem. it made me sad also because i can relate to what your going through and i know the discomfort of having ic.


          • #6
            {{{{{{Lisa Marie}}}}}}}} I will be the first one to tell you that this disease sucks! No ifs ands or buts about it. I am 23 and have had IC for a year and a half. I didn't even get to get started with life before this happened to me. On the bright side, it has gotten better. Hard for you to believe right now. The pain and frequency might not go away, but what has gotten better is my outlook. I have made peace with the fact that this is the hand that I was dealt and for whatever reason I have to go on. We are all suffering together and that is what makes this website the best. We support each other and hold each other up when necessary. Take pride in the fact that you are not alone. I like to think that we are just a litttle more special than other people. The harder the IC hits, the harder I fight. Try not to let it consume you. You are worth a lot more than this disease allows. Be strong and hold your head up high. When you need to let it out, come on here and let us help you.

            I hope this helped you. You will be in my thoughts and prayers.

            Lots of hugs,
            Laura xoxo


            • #7
              Believe me --- I know what you are feeling. When I was first diagnosed it was totally overwhelming. It took me a long time to find peace with myself and accept the fact that even if my life would be forever changed, I could have a good life.

              I have now been diagnosed for 26 years and I do live a full life. Yes, I can tell you where every restroom is in every mall and nearly all the buildings in our area. When we travel, we stop at every rest area if we're in the car. We also have a motor home so I can go to the bathroom on the road.

              I'm on a first name basis with all the staff in my uro's office and the urology unit at the hospital where I have hydrodistentions at intervals of six to twelve months. I'm currently on a regimen of DMSO once a month.

              I have some flares, but if I totally avoid all my food and drink triggers and drink an adequate amount of water, I do pretty well.

              It may take a long time for you to find out just what works best for you, but you will find it --- nearly all of us do. And you will have a lot of time when you feel good.

              Sending healing thoughts,
              Stay safe

              Elmiron Eye Disease Information Center -
              Elmiron Eye Disease Fact Sheet (Downloadable) -

              Have you checked the ICN Shop?
              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

              Patient Help:


              Diet list:

              AUA Guidelines:

              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
                {{{{{Lisa Marie}}}}} You spoke those words for all of us and it did it well....believe it or not, most (not all) of those feeling will eventually lessen. You will beable to have a full life, it will just be a little different from the one we had planned. I was able to work for 17 consecutive years thru-out my IC....and I am grateful to God that I had those 17 years because I had two small children to raise with no child support. It wasn't until after I was married that the pain got so bad that I had to give in to it and leave the job. Now I am on SS disability and have made peace with it.

                It takes a very long time for us to accept who we are today. BUT, once we finally do make peace with it, we end up being okay....I was floundering around in space with this disease and 2 years ago my hubby bought me my computer for Christmas so that I could hopefully find a place like this site. The first year, I shared mostly pain, anger and frustration. The last year has probably physically and mentally been my worse, BUT I HAVE STOPPED FIGHTING MYSELF. It feels so good not to look at myself as the enemy anymore.

                Eventually you will get there too....hang with us Lisa Marie...we can only take you to a better place. You need never be alone with this disease again. You will always have someone who understands what you are going thru not only medically but emotionally too.......many many hugs teri
                Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


                • #9
                  Wow, Lisa Marie. Your post echos within many of our souls, I think. We are all connected by our shared experience of IC. If I had to explain my feelings about IC to a normal person, I would show them your post.

                  {{{{{{{{{{{{Lisa Marie}}}}}}}}}}}}}}}
                  A cyber hug for you.

                  We know. We understand. We care.

                  Post and let us know how you're doing, okay?

                  Gentle hugs,
                  Melanie J.
                  "The sun shines not on us, but in us." John Muir

                  Living a happy life in spite of IC!


                  • #10
                    Lisa Marie! You took all of the feelings I have felt and beautifully articulated them into words! Sometimes I want to scream so loud because I can't always express how IC is effecting me. The people I work with think...a bladder who cares? What could hurt and go wrong with a bladder....I hate it that they don't want to listen or even try to understand.

                    I thank You.

                    We're here for you.




                    • #11
                      Yes I do have to agree this condition sucks big time.I've had it for over 3 years now and I am still not used to it and I never will be.It has it's ups and downs alot more downs then I would like but this is what it is.I go to the Uroligist today his name is Dr. Howard Slotteroff, he has been the best. He is the one that finally diagnosed me when no other dr could find what was the matter with me and gave me prescription after prescription for infections that I never had, which I could of told them and I had numerous times but they where the Dr. I'm having a flare up pretty bad this time. I haven't had one in quite some time so I should feel lucky. The pain gets to me so much that I can't get comfortable at all and forget about sleep."Whats that" I've tried alot of the meds for this but none has worked so far. Every once in awhile a actual pain killer and a heating pad does work. Hope you and everyone finds some relief, "If you's do please let me know.
                      Hope to hear from any of you Your I C Friend Cathy



                      • #12
                        Welcome Cathy!!!!!!!
                        You are definately in the right place and once you find a dr who is on your side and is willing to work 'with' you instead of against you, you have 1/2 the battle won.

                        I would NOT have picked this life for myself. But, since it chose me, I am very grateful for the tools the Lord provided for me to live better with a chronic illness. Since finding the ICN, I haven't felt alone and I think that was the worse part for me, feeling sooooooooooo alone. I hope you find the comfort here that I have.....
                        tons of hugs teri
                        Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


                        • #13
                          You will find this web site a gift from God. You have already gotten some good
                          advice. I find Donna especially helpful
                          and encourageing.
                          I hope you have a good Doctor.Find out about Prelief fast!
                          Read my Post under Remissiom(PeggyM).
                          I have been where you are and I think youwill find my progress encourageing.
                          Good luck. You will be in my prayers