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  • #16
    Sorry your having troubles Sacausa!!! I hope your exams go well despite how you feel. I'm home today because I was too sick to make it to work this morning. Bladder is killing me. I'm trying to put myself together to make it to work right now ugh. I know how you feel!!!

    Di

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    • #17
      So the exams went well! I got an A+ on the philosophy exam and a B+ on the biology exam (which is very good considering the class average is 50!)

      I'm no longer friends with my "best friend" she acutally ended up being the one to say she no longer wants to be friends with me, and well I didn't argue.
      current meds:
      cytotec 200mcg twice daily
      toprol
      allegra

      ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

      dx: hashimoto's thyroiditis 1998
      dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
      dx: endometriosis 2003
      dx: innapropriate sinus tacchicardia 2005

      meds tried but failed:
      elavil (6months)- severe tachycardia
      elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
      a bunch of others



      Me and my best friend's baby (also my Godson!)

      Comment


      • #18
        oh also wanted to add that I got a B+ on the history of medicine class which I'm happy with since it was the first exam of the semester and an A on the british lit exam.........

        oh and most importantly my FLARE is over, but I can't wait for Friday which is the beginning of my Spring Break to just deSTRESS!
        current meds:
        cytotec 200mcg twice daily
        toprol
        allegra

        ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

        dx: hashimoto's thyroiditis 1998
        dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
        dx: endometriosis 2003
        dx: innapropriate sinus tacchicardia 2005

        meds tried but failed:
        elavil (6months)- severe tachycardia
        elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
        a bunch of others



        Me and my best friend's baby (also my Godson!)

        Comment


        • #19
          Good for you Sacausa!! Congrats!!! To bad about your friend. Through experience I've seen friends come and go. It's a cycle or something!!! It's always a loss though!!

          Comment


          • #20
            Congrats Kiddo, you earned it!
            As far as the friendship thing...relationships come to end, sometimes,its not just with boyfriends....I'm sorry tho....it sucks just the same...
            I'm telling you, you'll find friends who won't care about your IC or this or that...or what ever comes with it.....I speak from experience.

            I cut all high-maintenance people from my life...I figure there's only room for one hi maintenance person and that's *me*! It's funny, I'm finding that we all have problems and we all have different things to deal with....and I've got friends who have kidney problems (pain, pain, pain) and colitis problems (bleeding, pain, being bedridden for days or weeks).

            You'd never know from looking at us, or talking to us....but's it there and well what can you do? Do the best you with what you got...the right people for you will get it and that's all that matters.

            Again. Congrats! Rest and Relax
            Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learn

            Comment


            • #21
              wow... all your stories sound like mine!

              Hi,I'm a 34 yr old man and sufferring from IC for the last year... God and you all only know my pain and anxieties. Reading the stories about how others dont want to listen to our pain reminds me of how some of the people in my life have back off and dont want to listen to my agony. I bare with my pain every other day and the frequency is daily.

              It's tuff but I know that soon I will find a solution like many of you have. I'm currently taking Elmiron which does nothing, bladder installations which work momentarily and for anxiety Hydroxyzine Pamoate. I am also trying supplements with dinner like Gloucasamine w/ msn, quercetin as recommened here in the IC network by other patients.

              I'm really trying to cope and have a normal life again and stay positive.

              Thank You all for posting your wonderful and insightful threads.

              By the way does anyone know where can I get cytopec or Cyclosporine-A?

              Firestarter
              Current Meds:
              Prozac to control anxieties due to IC.
              Stop takin Elmiron because of the side effects... Headaches, nausea, blurry vision and Fatigue.Back on Elmiron
              Feel alot better off the Emiron frm anxieties. Still have urinary frequency and at night it's worse with flatulence,mucle cramps and spasms.
              Low testosorone, On Pacthes!
              Hydroxyzine pamoate 25mg

              Comment


              • #22
                Hi Firestarter,

                You are definitely not alone!!! It takes a while to learn about what we can and can not tolerate. I'm very sensitive to chemicals in vitamins, supplements, medications, and food. I have tried MSM tablets, but can not take them as I flare. I've tried the liquid without preservatives as well and flared from that too. I take Cysta Q, and Cystoprotek although right now I'm taking only Cysta Q. I'll add the Cystoprotek back in again soon, but of course you can't take these both at full dosage because they both have Quercetin. I take 2 Cystoprotek in the am, and 1 Cysta Q at night, and this combo seems to help a lot along with the diet. I hope you find relief soon.

                Comment


                • #23
                  your t shirt

                  SAcausa, I love your T shirt. I grew up with the Beatles, saw them in concert when I was 10 years old. Well Ill end right now is making me feel old.

                  Comment


                  • #24
                    aawe thanks! I got it from Urban Outfitters.. .they have great shirts like that
                    current meds:
                    cytotec 200mcg twice daily
                    toprol
                    allegra

                    ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

                    dx: hashimoto's thyroiditis 1998
                    dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
                    dx: endometriosis 2003
                    dx: innapropriate sinus tacchicardia 2005

                    meds tried but failed:
                    elavil (6months)- severe tachycardia
                    elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
                    a bunch of others



                    Me and my best friend's baby (also my Godson!)

                    Comment


                    • #25
                      Hi sacausa,
                      Hmm, your friend's comments sound a lot like something one of my "friends" said to me when I first got sick. And she said it to me in front of two other friends during dinner. She probably didn't expect me to tell her what I thought of her comment & her perfect little life, but she did turn gray by the time I was finished. We didn't speak for a year, but have exchanged notes of apology since. I don't think I'd have much to say to her even now though.

                      One thing about IC is that it does "sift" out the true from the weak friendships. It tests not only our own character, but that of those we are close to. I can honestly say that my friendships now are 10x better than before IC, so while the losses were sad at the time, I'm over it now & am very happy with the people who have stuck by me.

                      Hang in there with school, summer's right around the corner!
                      Kadi

                      -------------------------------------------------------------
                      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.
                      ------------------------------------------------------


                      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                      Source - Pinterest
                      "


                      Current treatments:
                      -IC diet
                      -Elavil 50mg at night
                      -Continuous use birth control pills (4-5 periods/year)
                      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                      -Pyridium if needed,
                      -Pain medicine at bedtime daily, as needed during the day several times per week
                      -Antibiotic when doing an instillation to prevent UTI
                      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                      -Dye Free Benadryl 50 mg at bedtime
                      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                      -Managing stress= VERY important!
                      -Fur therapy: Hugging the cat!

                      Comment


                      • #26
                        That's awful Kadi! This particular friend and I have actually worked out our differences in the mean time (after not speaking for two months)... we had been best friends for 5yrs without any serious fights so I just think we reached a boiling point where we both needed to get things out... since then she's been much more supportive etc. and I have also been more understanding of her (since she has known me since before I got sick, there were also adjustments for her which can be easily over looked).... Anyhoo, so that's my deal.
                        current meds:
                        cytotec 200mcg twice daily
                        toprol
                        allegra

                        ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

                        dx: hashimoto's thyroiditis 1998
                        dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
                        dx: endometriosis 2003
                        dx: innapropriate sinus tacchicardia 2005

                        meds tried but failed:
                        elavil (6months)- severe tachycardia
                        elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
                        a bunch of others



                        Me and my best friend's baby (also my Godson!)

                        Comment


                        • #27
                          Hey, you changed your picture! Looks great!
                          Are you still taking Cytotec? How is that going?

                          Comment


                          • #28
                            I'm curious too Sacausa, and nice picture too pretty girl!!! I haven't even attempted to try it again after my first attempt.

                            Comment


                            • #29
                              I've been on Cytotec now for almost a YEAR! It's been amazing, I'll write a detailed update soon... but right now I'm in the process of stopping Neurontin, so soon I won't be on any medications for IC/IC pain except the Cytotec. I hated the cystoscopy with hydrodistention, but lately I've been curious as to what my bladder looks like now. Before, my bladder was covered with pin point bleeding and glomurations*howeveryouspellit so I'm kind of interested to see how it has recovered. I do know though, that I can't skip a dose of the Cytotec, because if I do, I feel it!
                              current meds:
                              cytotec 200mcg twice daily
                              toprol
                              allegra

                              ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

                              dx: hashimoto's thyroiditis 1998
                              dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
                              dx: endometriosis 2003
                              dx: innapropriate sinus tacchicardia 2005

                              meds tried but failed:
                              elavil (6months)- severe tachycardia
                              elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
                              a bunch of others



                              Me and my best friend's baby (also my Godson!)

                              Comment


                              • #30
                                That's great! I'm so glad it's worked well for you. Do you think you will always have to take cytotec, or will there be a point where you can try going off of it?
                                Hydros not fun. But I do also wonder what's going on in my bladder compared to my first one in 2004, since my symptoms are so much better now. But you'd probably have to hog-tie me or put me in a straight jacket to get me to the hospital to have one
                                Keep us posted on your progress. Always good to hear a success story, especially with one of the experimental meds.

                                Comment

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