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It's NOT FAIR!!!!!

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  • #1

    It's NOT FAIR!!!!!

    I have been in misery for a week now. THis is the longest a flare has ever lasted for me. While I know that I am lucky to say that, I can't see the sunshine in that right now. It's extremely frustrating!! I used to be able to find joy in success for my friends and family but I can't right now. I am a singer and it's always been my dream to be a professional singer one day. First of all, the surgery that I had to be diagnosed in February of 2006 left scar tissue on my vocal chords and I am JUST now getting my voice back...and I'm a music teacher who couldn't sing at all last year! Then, I have a friend who was on American Idol....like REALLY on the show. If you watch, then you know him. Well he put pictures of him on his site and it's pictures of him and all these great celebrities. Well I just saw them and they just made me cry all the more because he's living the life I always thought I'd have and I am here sleep deprived because my body has turned on me. UGH!!!! I just pray that one day I can reach my goal and bring attention....and MONEY....to finding a cure for this disease. Thanks for taking the time to read this. Reading all the encouraging words people send always brings me comfort.
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    • #2
      I hope your flare ends soon. When flaring I would always tell myself "This is temporary, this is temporary, this is temporary....." Hopefully since your flares don't usually last this long it means it will be ending soon. Could you have a UTI?
      Kim

      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

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        • #3
          I think it would be a good idea to have a urine check to be certain you don't have an infection. I'm assuming the surgery you had was a hydrodistention? My first hydro controlled my symptoms for about two years before I needed another. My anesthetic of choice is a spinal for these, which doesn't require intubation.

          Warm 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

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            • #4
              the urgery I had was indeed a hydrodistension but I had a D and C also because of clotting. I have been battling yeast infections for about 6 months now but as of last week I don;t have the curdy discharge anymore so I am confused!

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                • #5
                  I would suggest you get on something like azo for yeast even after the infection is gone because the yeast will stay in your body.. Try to stay positive you will get over this flare.. I am flaring right now to and it sucks.. But I just keep drinking lots and lots of water to flush my system out.....
                  Hugs
                  Ronda

                  ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                  Link to Patient Handbook:
                  http://www.ic-network.com/handbook/

                  Diet Reference Sheet:
                  http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                  Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                  Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                  Meds I have Tried:
                  Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                  Lexapro< Bad reaction to this med!
                  Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                  Dx With IC in Nov 2006 with Hydro/Cysto
                  Hydro/Cysto Caused Bladder to Rupture.

                  Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


                  ICN 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.

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