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"A Tribute To All The Long Time Pain Sufferers From Interstitial Cystitis"

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  • "A Tribute To All The Long Time Pain Sufferers From Interstitial Cystitis"

    "A Tribute To All The Long Time Pain Sufferers From Interstitial Cystitis"


    There are so many thing that are swarming around in my head right now but the one thing that is bothering me the most is the fact that so many of you long time suffers have been through so many trials and tribulations just to get to some point of validation.

    My experience yesterday with my GP really changed the way I look at and feel about people who say they had to suffer for years before anyone even would acknowledge them. I mean, I have always had compassion for all of you , but to actually hear the words that you had to hear for so many years “Its All In Your Head” It just infuriates me to no end. I cant believe in the year 2007 there are still doctors out there who are still so ignorant to this disease! This doctor plain out stated that it was a crazy person disease and someone who wanted drugs. I am just so hurt and appalled by her words.

    I am so sorry for any of you that has had to deal with this over a period of time. Just one time for me was enough! And I already have a confirmed case of IC through a Hydro/Cysto. But still she tried to make me doubt my disease. I can understand how years of this would make one think they were crazy or it just might be in their heads. Here I am hurting so bad and knowing what is causing it and then hearing a “Professionals” words and I am doubting myself! I know that sounds crazy but I am sure if any of you have heard a doctor tell you this then you can relate.

    But I snapped out of it quick and then just kept getting madder and madder for the fact, that I didn’t stand up for all of you that have been there before me. I think it was due to the shock.

    But I just want to let all of you know that have been through this that your strength and courage to continue to fight and proceed with your journey to find the cause of your symptoms and pain has opened the gates for people like me and so many others to not have to got through the emotional and physical trauma that you all had to endure..

    I applaud and thank you all. You all are true heroes in my eyes. Take care and I hope all of our journeys will soon lead to a cure.



    Ronda
    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.

  • #2
    Re: Tribute

    Hi Rhonda

    It is so sweet of you to say that. I was diag. about 30 yrs. with ic and it has been hard . It sure feels good to know that the fight we still deal with daily can somehow pave a road for younger ladies and their spouses. I believe every thing we go thru is to help someone else. I am so ready for heaven. This site has really blessed me over the past few months. It is even so hard to see family members look at you like you are just worth nothing. I don't ever want anyone to go thru what I have had to and other older ic veterans.The post about family members are so true and my chrildren don't really understand or sometimes don't seem to care after they have watched you suffer for so long. I have pretty much lost my son and my SIL is slowly working on my daughter. All I can hope is that someday they will come to their senses and hope they don't have to deal with chronic illnesses theirselves. My DIL is so high above everyone else. she should have been a ic doctor because she thinks everyone can just go on and now my little granddaughter is having problems. AHH all this junk doesn't matter. We all know when we have true pain, and who would want this life of ssd when they could work and have more finances and get out once in a while. Just hag in there and take care.

    May God bless all and may we all be healed soon.

    Love yall

    J.J.

    Comment


    • #3
      I am so sorry this happened to you too. My parents were going through a divorce when I started having symptoms. The doctor told my parents I don't have a uti, and I was trying to get attention. Doctors truly make me sick sometimes. Thanks for the kind words. Don't let that misrable excuse for a doctor get you down!

      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


      • #4
        I truly understand your frustration. I'm sorry that you had to go threw that. I hope that you are able to find a different doctor, and I pray that doc never has to go threw the pain, pressure, urgency, depression that we have all had to endure......maybe I do....maybe it would be the BLESSING that we all need is for a "doctor" to get this disease. No I don't wish any harm to anyone....carma sucks!!! lol

        Take care and please keep looking for another doc. Have a nice weekend
        Live your life to YOUR best, and Love to YOUR best!!!



        DX in 03 with Shingles
        Removal of Left ovary due to Cyst in 2005,
        I have had cyst since I started my period as a child age 12
        Hysterecotmy December 06
        IC DX March 07 by PST
        2 "rescue" instills in March 07
        Cyco May 07 confirmed IC
        Uro study June 07
        1st Pain Block July 17,08
        Hydro/Cysto Nov 11, 2008
        12-11-08 was told I had alot of inflamation

        Meds: Allergic to 6 things
        Premarin......taking the gen cause I get it at Walmart for 4$$
        Presique for my drepression :woohoo:
        Abilify for my depression
        Adderall ...found out I'm ADD...makes sense now
        Kolopin for anxiety
        Noroco for my pain
        Valtrex for my shingles as needed

        Sorry if my spelling is off on the meds [/FONT]


        http://community.webshots.com/user/s...host=community

        Comment


        • #5
          Thanks for the Blessings.. But this post is for all the people who have suffered before me and who have had to deal with this kind of discrimination for years. I only had to deal with it for one day.. They have had to endure this for years.. They are the ones that deserve the the blessings

          Ronda
          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


          • #6
            Thank you leelee. when I was bounced from doctor to doctor, my husband was always drunk and we would fight because I was in pain and couldn't work, he didn't believe me I guess. The gyn sent me to the GP and he would send me back to her. She pulled my husband aside and told him that he needed to take his wife home and explain to her there was nothing medically wrong with her, she is seeking your attention, and pretending to be in pain was how I was doing it. You want to talk about a blow to the head, he screamed at me all the way home and once he had gotten drunk it was worse. I had to go back to her for a referral, and she refused. I took my mom and she questioned her left and right. she finally gave me a referral to see a uro. Again hubby and I went and he did an in office cysto, and told me and my husband, my bladder was normal, and there was nothing wrong, maybe I needed a counselor. Well I lost it, and busted out in tears. I told him that there was something wrong, and I was sick of being told it is in my head. He told me he would amuse me and do a procedure called a hydro/cysto, but, guaranteed he would find nothing. I had the procedure done, and he apologized to my husband left and right. He said your wife's bladder is horrible, she has less then a 350 cc capacity under sedation with severe discomfort. That fall in open enrollment we changed our insurance so I did not have to have a referral, and could choose my primary.. I fired all my doctors, and now have new ones.
            It is not fair to have to fight for medical help. too bad some doctors are completely too full of them selves and think they are too good to learn more in the medical field to learn that IC is Real!
            'The will of God will never take you where the Grace of God will not protect you.'

            Comment


            • #7
              Sending some Hugs your way Ronda. We'll always be here for you. We are truely one big family here.

              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


              • #8
                I'm sending a warm, sincere, gentle hug your way.

                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


                • #9
                  Ronda I am sending hugs your way too. Your thoughtfulness is so sweet.

                  Take care, Trishann

                  Comment


                  • #10
                    Cindy and Trishann,
                    You both are ones who came to mind when I was writing that..I am so so sorry you had to go through all the pain and suffering before someone believed you..Its just so wrong..
                    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


                    • #11
                      A very sweet girl in my bible study class gave me a book when she heard I had IC.
                      It was a book on chronic illness written by a pastor who pretty much said all illnesses are brought on ourselves by our thoughts & sins. It mentioned IC by name, said it was caused by unchecked anxiety & if we just had more faith, we'd be fine & recover.

                      I don't think this girl realized what the book said, she's one of the sweetest & most innocent people I know (she said the book had helped her a lot), so I thanked her for how kind she was thinking of me, took the book home, ripped the cover off & threw it in the recycling bin. I think recycling it into toilet paper is appropriate.

                      You know, it's pretty amazing how people who know so little (like the doctor you saw or the jerk who wrote this book) can be arrogant & cruel.

                      An antidote to this is that the ICA is coming out with 60 second TV ads to be shown on several dates this summer on a number of very visible TV channels (Lifetime, Biography, & others). Hopefully more awareness will prevent others from suffering like we have.
                      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


                      • #12
                        cool

                        I'm excited to hear about these commercials. I know it will reach tons of women (and men). They'll think, "Hey, that sounds like me. Maybe I'm not crazy after all. Maybe this is real." And that'll give them the courage to seek help. I can't help but wonder how many suicides this ad campaign might prevent.
                        Last edited by LeeAnn; 06-22-2007, 03:04 PM. Reason: oops
                        Lee Ann
                        Current Rx Meds:
                        Atarax, Ditropan, Elmiron
                        Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
                        Hooray for babies!
                        Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
                        Didn't work for me:
                        Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
                        IC (Mod-Severe) since 1996

                        UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


                        My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

                        Comment


                        • #13
                          Been down this road myself. Its unfortunate that it happens.

                          Take care..

                          Diana
                          (\__/)
                          (o.O )
                          (> < ) This is Bunny. He's on his way to world domination.

                          Comment


                          • #14
                            HI Rhonda,
                            Luckily we all survived those days of old with those ol'doctors who didn't know squat about IC and tried all kinds of painful, useless tests. I'm SO happy to have a great URO/IC specialist now and have all the great IC meds.
                            I hope one day soon we'll all be cured of this rotten IC so we can all lead normal lives again!
                            I hope you have a great, painfree weekend Rhonda......and everyone else! Roxie

                            Double Spinal Cord Stimulator surgery 8/09
                            Unsuccessful MiniArc sling surgery 12/07
                            Dx'd Hypothyroid
                            Dx'd Chronic Axonal Neuropathy & Myopathy
                            June 2007
                            Dx'd IC May 2006 (after suffering for 25+ yrs!)
                            First Cysto 1979
                            First Hydro 1981 (Many treatments since then!)
                            Collagin"Durasphere" injections for urethra
                            Gall bladder surgery Aug. 2004
                            Gastric Bypass Dec. 2004
                            Dx'd: Barrett's Esphogus July 2004
                            Dx'd: Vaginal Atrophy 2005
                            Bladder surgery 2000
                            Dx'd: IBS 2000
                            Hysterectomy (fibroids) 1999
                            Laminectomy 1989
                            Dx'd: Degerative Disk Disorder 1989

                            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                            Comment


                            • #15
                              Yes you have Roxie and I am just so sorry you all had to go through what you did..You were very courageous to continue your fight
                              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

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