No announcement yet.

Just need to vent

  • Filter
  • Time
  • Show
Clear All
new posts

  • Just need to vent

    Ok...I'm tired. I'm tired of this flare. I'm tired of not knowing if it's going to end or when. I'm tired of the pain. I'm tired of not being able to safely eat in restaurants without making all sorts of really high maintenance requests. I would give anything just to have a coca cola. I'm putting myself back on anti-depressants when I get home because my mind is feeling more tired than my body these days.

    There, I've said it all out loud.

    On the other hand... I've discovered that blue is a lovely shade for pee and much much better than orange. The contractors have nearly finished taking down our old siding and are getting ready to put up the pretty new siding. I have a wonderfully understanding husband and a terrific kiddo and they keep me going.

  • #2
    (((((((((Robin)))))))))))) I'm sorry that you can't seem to get this never ending flare under control. I hope you find something that works for you soon. I know how hard it can be. I have found some relief, not pain free but better and then I drank something that had green tea in it because I didn't read the back label and OUCH!
    Don't you love blue pee, I really do prefer it to orange pee myself.
    That's great that you're getting new siding. We're getting a pretty new living room set delivered on Thursday, I can't wait!

    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus


    • #3
      Thanks for commiserating with me. I'm trying to remind myself that during the last four years with IC I have had some good times. Lately, it just seems so unending. Glad you had found some relief, but sorry you're flaring from the tea.

      Enjoy you're new living room set!


      • #4
        Are you taking Urelle? I love pretty blue pee too. I do not like a stained toilet though.
        I have taken Urelle off and on for a couple of years. Never had a problem with it until this last time. Has anyone else gotten really bad headaches while taking it? This next side effect is still bothering me even after discontinuing use of the Urelle--when I go the the bathrm I have to push so hard just to get a stream started. I can feel the pressure in my head. Then when I quit pushing I have this horrible amount of pain go thru my head. It lasts a few minutes after going, then I cont. to have a mild headache all day. When I was taking the Urelle I felt like my brain would explode.
        I don't mean to take over your thread--I just wanted to add to it.
        p.s. I'm tired of an ongoing feels like a life time flare too.


        • #5
          Sorry your flaring. Hey I am kinda found of orange pee LOL, but at least if you girls forget to flushthey just think it is one of those bowl cleaners, if I forget EVERYONE knows . Hope you start to feel better


          • #6
            I am so sorry you are still flaring. I have been for months also, and have no idea why!! (other than I usually do in the spring and fall; alleriges, mast cells, all that fun stuff).
            Perhaps we should start a club???
            The society of the never - ending flares

            And people could get congratulated when we kicked them out instead of welcomed them in!
            Just a little silly today; too much pain meds methinks.

            Hope you feel better soon!


            • #7
              That's a great idea...a club that you WANT to be kicked out of! I'm definitely feeling like I'm part of that society of never ending flares. Count me in. Hope you feel better soon.

              I'm actually on a business trip and was feeling so flary that I took the afternoon to come and join my heating pad for some hang out time in my hotel room. It's so sad when you're in a great city and there are so many things to do...and yet, all you want is hand with the trusty heating pad.


              • #8
                blue pee?

                What is it that makes everyone's pee blue?
                I want some

                <a href="" target="_blank"><img src="" border="0" alt="Photo Sharing and Video Hosting at Photobucket"></a>
                Quit ELMIRON due to hair loss
                Cystoprotek ROCKS!

                find me on FACEBOOK -
                search my email [email protected]

                Current Meds:
                AM Cystoprotek & ATARAX 50mg
                Dinner CYSTOPROTEK
                PM Elavil 25mg


                • #9
                  Mom in ma,
                  I am still wondering if you live near me. We could cry together or sip spring water. You can pm if you are interested. No hard feelings if you don't! I hope you are having a better day.


                  • #10
                    I'm in western MA. How about you?


                    • #11
                      urised makes you pee blue I love the stuff..

                      Hey robin, hope you are feeling better, its storming here so fibro kicked in and the bladder wanted to be part of the party. I feel I have just been hit by a mac truck and drug 50 miles..

                      We need to reopen CLUB UTI... I want that cute muscle guy for an all over body massage..
                      'The will of God will never take you where the Grace of God will not protect you.'


                      • #12
                        mom in ma
                        I am about one hour north west of Boston. Apple country!


                        • #13
                          In all fairness....I only read the first post

                          I love having blue pee! I love urelle! Pyridium was an old stand by unitl I got my new uro, and I would not hesitate to use it in a pinch! Well i'm glad you feel better soon. I hope the urelle gives you releif!

                          IC diagnosed officially via cysto/urodynamics 1/26/07

                          Grade II Endometriosis diagnosed via lap 12/11/07

                          "Fall down seven times, Stand up eight."

                          "Life is a tragedy for those who feel and a comedy for those who think."

                          Current Treatments:
                          Interstim Since 5/25/07!
                          Birth Control


                          • #14
                            Count me in to the club too! I'm going on over a 2 month flare now. It's never ending and I want to get kicked out as soon as possible! LOL.


                            I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!


                            • #15
                              We should really do this mo-ma

                              I think it's a great Idea. Set up flyers, monthly conference calls, t-shirts made, that kind of thing. I have been flaring for about 9 months now-solid, no break. And it sucks! So I would love to join a club I could be kicked out of!! Bring it on!