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  • #1

    Boohiss, back..

    It's been such a long time since I've been here, I thought I better do this again.

    I was diagnosed in 2005 with severe symptoms that started slowly, then nearly killed me. I applied for disability and have been fighting for it till just this afternoon; turned down every time and still fighting. Although, dare I say, it might just be looking up after 5 years.

    I was blessed to find two Uro's in my area, or State I should say, willing to deal with my pain issues....but with pain meds, come more issues...damned if you do, damned if you don't.....but I'd rather be damned and not crying in pain, thank you.

    Sadly, I did not respond to Elmiron and am VERY diet sensetive....so sensetive that if I eat or drink.......OUCH. My bladder just hates everything...but nothing more than orange juice (which I bloody LOVE, dangit).

    This site saved my life. Literally. I'd have not known what to do, as there seemed to be NO ONE who knew a darned thing about IC in 2005 when I was diagnosed, and I would've been lost.

    I have no excuse for not being here, other than to be very honest and say...that if I couldn't be uplifting, I felt I had nothing to offer...and, maybe I was wrong.

    Glad to be back. Such an odd disease we have....and it IS good to talk to others who are just as bizarre as you....so you know you're not alone.

    Boo
    Diagnosed IC: Oct. 2005
    Other conditions: Fibromyalgia, Migraines,BiPolar Disorder, degenerated disc in back & Scoliosis

    MEDS FOR IC ONLY

    Oxycontin, 40 mg 3 x's daily
    Nerontin 1600 mg daily
    Cysta-Q
    Prelief

    MEDS: COEXISTING CONDITIONS
    Lithium
    Depakote
    Clonopin/Xanax
    Ambien
    Phenergan
    Butorphanol Nosespray
    Tags: None
  • #2
    back.


    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    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: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.     [3MG]

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

    Comment

    • #3
      Welcome back. I'm very sorry to hear about your pain and struggles with disability. The system can really suck sometimes.

      I'm also back after a long break. I wish we didn't have to be here, you know
      Diagnosed with IC in 2004 at the age of 19
      12 weeks of instillations (don't remember what)
      Remission from late 2005 until August 2011.
      Married in 2005 - Our son was born in 2008!

      IC acting back up after a severe UTI in June followed by another mild UTI in August.

      Current Treatment
      ~IC diet - not strict, but avoiding most things including my beloved soy chai lattes. Drinking only water and blueberry juice. No tomatoes or anything spicey.
      ~1/2-1mg Ativan per day - has been the only thing to help! Praying that my doctor will let me continue with it
      ~25mg Doxipen
      ~Azo as needed (don't really notice a difference)

      IC symptoms get progressively worse throughout the day. Sleep and constant distraction are my only refuge!

      Comment

      • #4
        DONNA! How the heck are ya?

        Thanks HeyBrej! Sakes alive, I hope I don't have to apply again....I don't think I have the mental fortitude for it, ya know?
        Diagnosed IC: Oct. 2005
        Other conditions: Fibromyalgia, Migraines,BiPolar Disorder, degenerated disc in back & Scoliosis

        MEDS FOR IC ONLY

        Oxycontin, 40 mg 3 x's daily
        Nerontin 1600 mg daily
        Cysta-Q
        Prelief

        MEDS: COEXISTING CONDITIONS
        Lithium
        Depakote
        Clonopin/Xanax
        Ambien
        Phenergan
        Butorphanol Nosespray

        Comment

        • #5
          I'm still plugging along --- getting older --- wondering when the wiser comes with the older.

          Seriously, my IC is doing about the same.

          Hugs,
          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          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: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          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.           [3MG]

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

          Comment

          • #6
            I'm back again too

            Well, I finally found a forum I might fit into. Don't know you other gals too well but with IC we know it doesn't really make any difference. I was in remission, for the most part, for almost 3 yrs. Then an assoiciate of my uro told me that I needed to cut back on my hormones, mistake but what did I know as I hadn't had a lot of experience with this. That started everything back again. When I got back on track again it took a good 3 to 4 months to start feeling that I had control over all of it. (well somewhat, that would be with the IC diet etc.) Oh, but wait...........another doc tells me that I need to go on meds for my Thyroid etc. Then I have to have injections for my back and go on Celebrex. Withouth knowing my IC flares come back, but I have no clue as to why because of my lack of experience. Each doc knows that I have IC, wouldn't you think there might be a "caution light" before they go prescribing an IC patient on new meds to use. Of course not every IC person responds in the same way, but this sure has taught me a lesson. I guess I have trusted these docs a bit too much. I hate sound skeptical but that's the way I' beginning to feel. Anyway, who ever reads this, sorry to rant and rave. I just appreciate this site so much and vow to check it with it more often than I have. It is so helpful even if it's just to use as a sounding board. Hugs, to everyone and hope this is a good IC day for all of you.

            Comment

            • #7
              Judy: It sounds like you need a primary care physician who will oversee ALL of your medications --- also it's very wise to use the same pharmacy --- most will now pick up on medication interactions. Just so you are aware, many IC patients have a problem with NSAIDS so Celebrex might be a problem for you. You won't know unless you give it a try.


              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              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: http://www.ic-network.com/patientlinks.html

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              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.               [3MG]

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

              Comment

              • #8
                My flare

                Thanks for your respone Donna, it is so helpful. I do have a primary doc and a female at that. She is young, you would think she might be aware but looks like I have to be my own advocate. I live in Nevada, rual area, and medicine is a bit different here (came from the SF B/Area). But with all that said I will have an appointment with her and talk to her about all this. I never knew that Celebrex could be a problem but sure do now. I think the next time they try and give me anything I will go on the forum and send out a message to others that might give me a heads up on things. Have you heard anything about cortisone injections, could they cause a problem? Again Donna, thanks for your help. It's always comforting to see you on the IC network and know that if you have any tips or guide lines you will offer them.

                Comment

                • #9
                  Hey Boo, I'm rarely here anymore either - just happened on the site this afternoon for the first time in a while, and I remember you from before, so
                  ****
                  Jen

                  *Diagnosed with severe IC in 2004
                  *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                  *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                  *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                  **I am not a medical authority nor do I offer definitive medical advice. 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.

                  Comment

                  • #10
                    I have had cortisone injections into both shoulders. One was for a frozen shoulder and it allowed enough pain-reduced movement that I could get the shoulder moving again. The other shoulder had huge spurs and the shot helped only temporarily.

                    For me, it was definitely worth a try and in one instance was successful.

                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    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: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    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.                     [3MG]

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

                    Comment

                    • #11
                      me again

                      Did you think that the Cortisone bother you IC?

                      Comment

                      • #12
                        Cortisone actually helped with my IC symptoms when I had to take it orally for an allergic reaction --- the shoulder injections didn't effect my bladder at all. I did, however, have solu cortef instillations (a steroid) and they helped.

                        Donna
                        Stay safe


                        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                        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: http://www.ic-network.com/patientlinks.html

                        Sub-types https://www.ic-network.com/five-pote...markably-well/

                        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                        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.                         [3MG]

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

                        Comment

                        • #13
                          Donna: It's terribly corny, I know, but without having had been able to speak to you and several other members here after I was diagnosed, I truly believe my life would've fallen apart due to fear; I was terrified when diagnosed. My Urologist at the time didn't seem to know squat about IC! I woke up from the test-procedure, and he said, “Nancy, you have IC. Don't eat any tomatoes”, and walked off. THAT WAS IT! I signed up here within a few months of that AND HERE is where I found answers. Heck, HERE is where I finally found a Uro, Dr. Robert Evans (who's on the board of the IC Association, btw) who HELPED ME. I can't thank you enough, Donna, and everyone else who had all those wickedly embarrassing conversations with me privately (you know who you are! )

                          Oh, and I'm convinced we never get wiser, Donna. Well, at least I haven't seemed to either!!!

                          Judy G: Nice to meet you! Contact me privately, if ya like. I need to “pay it forward”, if you're familiar with that....

                          Sarajini: OH MY GOODNESS! Of course I remember you, hon....how could I forget! Some of those “embarrassing conversations” I had were with YOU! Send me your email addy, if you like, to the inbox here, mmkay, and we can catch up!
                          Diagnosed IC: Oct. 2005
                          Other conditions: Fibromyalgia, Migraines,BiPolar Disorder, degenerated disc in back & Scoliosis

                          MEDS FOR IC ONLY

                          Oxycontin, 40 mg 3 x's daily
                          Nerontin 1600 mg daily
                          Cysta-Q
                          Prelief

                          MEDS: COEXISTING CONDITIONS
                          Lithium
                          Depakote
                          Clonopin/Xanax
                          Ambien
                          Phenergan
                          Butorphanol Nosespray

                          Comment

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