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  • Happy Birthday Tigger_gal

    Happy Birthday Cindy!!!!!!!!!!!

  • #2
    Happy Birthday Cindy
    Christine



    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

    Comment


    • #3
      Happy Birthday, Cindy!!!!!

      I hope all the wishes you wish today, will come true for you! And I hope you have a really nice birthday cake, and lots of people who love you, wishing you a very happy birthday.

      Blessings,
      Lori

      Comment


      • #4
        Thanks so much
        'The will of God will never take you where the Grace of God will not protect you.'

        Comment


        • #5
          ****
          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


          • #6
            Happy Birthday!


            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


            • #7


              Erika
              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

              Comment


              • #8
                thanks girls
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment


                • #9
                  :woohoo: happy birthday to you...how old are you now? <wink wink> just kidding!!
                  (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                  Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                  I'd like to be on House, MD as a medical mystery.

                  Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                  Connor & Mommy by the tree:


                  Connor with Santa...so happy!


                  I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                  Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                  I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                  Comment


                  • #10
                    Happy Birthday Cindy !!

                    I hope your day is special Cindy as you sure do deserve it my friend !!

                    Hugs, Debbie
                    Thinking positive has got me through to another day!!

                    Comment


                    • #11
                      Cindy,



                      Enjoy your day!

                      Kara
                      Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                      "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                      I also have some journals of my journeys, past and some present at:
                      http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                      Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                      Comment


                      • #12
                        Hey!

                        Happy Birthday, TiggerGirl! Have a good one!

                        Danita
                        Dani


                        -Bladder surgery to correct reflux-'68
                        -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                        -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                        -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                        -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                        PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                        -DX'd with IBS in 2000
                        -Rhabdomyolysis in 2001 (has not returned)
                        -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                        -DX'd with TMJ in 2000-wear splint
                        -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                        -DX'd with Epilepsy -2000
                        -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                        -DX'd with Fibromyalgia (2006)

                        Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                        Comment


                        • #13
                          HAPPY BIRTHDAY TIG
                          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.

                          Comment


                          • #14
                            Happy Birthday!!!

                            Heh heh heh - so what'd you wish for?
                            Hugs,
                            Tracey
                            How do you eat an elephant? One bite at a time...

                            Harry arrived 2/23/09!



                            *IC 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.

                            IC Diet Cheat Sheet:
                            http://www.ic-network.com/diet/2009icdietlist.pdf



                            Dx's:
                            IC dx'd Nov 2004
                            Lymphocytic Colitis dx'd July 2005
                            Possible IBS
                            Current IC Meds
                            Vistaril 25mg in the evening
                            Previous IC Meds taken:
                            Cystoprotek - 2 caps 2x's a day
                            Elmiron, 100mg 3x's a day
                            Ditropan, 5 mg 3x's a day
                            Others:
                            Wellbutrin 150mg 2x's a day for Anxiety/IBS
                            Pepcid 40mg a day for GERD
                            Zytrec for Nasal Allergies
                            Align Probiotic daily for IBS

                            Comment


                            • #15

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