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Thumbs down for IC

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  • Thumbs down for IC

    I just started my senior year, and I can't get out of bed. I cannot get more than five feet from my heating pads and pills. I want to go out and have fun. I want to be with my friends. Our football just won there first home game of the season. the entire campus is going to celebrate and I can't because I can't get out of bed. I can't even clean my room. This stinks. I know I am whining, but it is the first time in a long time feel emotionally able to go out. The one time I actually feel like being human, I am sick. It just isn't fair. I know cry me a river.
    IC-diagnosed August 1998 with cystoscopy and hydro
    IBS-diagnosed in 1998 probably had for majority of my life
    Fibro-Diagnosed in 2010
    Other conditions: Depression, High Cholesterol (irony)

    Primary symptoms: PAIN, bloating, frequency, urgency, fatigue

    Current Meds: Elavil 10mg at bedtime, Toviaz 4mg at bedtime, Lyrica 3x a day

    Failed meds: Vesicare, Detrol LA, Celexa, Vioxx, Celebrex, Ditropan XL, Elmiron
    "In the middle of difficulty lies opportunity."

  • #2
    Hey Grinch--

    First of all, you go on and vent! You are not a whiner!! It is not fair that you are stuck inside while the outside world is living life!

    How long have you had IC? What treatments have you tried?

    I did reply to your flare post, and I hope that you can things under control. Good luck! If you need to talk, you can PM me, I am here!

    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


    • #3
      I'm sorry to hear that you stuck inside...I so understand how you feel. Being in College and not able to do things..would drive me crazy too. I'm here if you need anything, you are welcome to email me at [email protected] bye


      • #4
        I agree - vent, girl!!!! That does suck! Have you ever thought of throwing a little celebration of your own? Nothing major - no big prep, just a bunch of friends to your place? Or just a handful. Bring some fun to you!

        We're here for you and sorry you are feeling so badly.

        Diagnosed August 2001

        Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

        Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

        I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


        “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

        “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


        • #5
          Hey you have every right to have a whine, IC does suck and especially when you want to do something and the IC keeps you in bed, hope that you get a break from it real soon, and able to go out and enjoy the world, take care and hugs Iris hi grouphug grouphug
          Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


          • #6
            grouphug grouphug grouphug
            Hang in there , There is hope.
            There is hope. Prayer works.

            Love, Debbie


            • #7
              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!
              Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


              • #8
                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

                "Life is what happens when you are making other plans" John Lennon

                IC diet cheat sheet....

                Information for Patients can be found here.

                Jen's tips for great IC sex..[/url]

                Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."


                • #9

                  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


                  • #10
                    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?


                    • #11
                      how do i check my private mail?


                      • #12
                        Katie: To check for private messages, scroll to the top of this page and click on "my profile" --- you will find your messages there.

                        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


                        • #13
                          Katie, Hi and welcome to the ic network. There is alot of support and caring on the boards.
                          Hang in there , There is hope.
                          There is hope. Prayer works.

                          Love, Debbie


                          • #14
                            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
                            Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


                            • #15
                              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