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  • This weekend is going to suck!

    I just need to say how much this is going to suck this weekend. I still have a head cold. I am losing my voice, which if any of you knew me in person you would know that I NEVER shut up, so losing my voice is not a good thing for me but maybe for everybody else
    I just started my period. This is the first time I have had a period in months and they always flare me. BUT I'm on contious birth control but a couple of weeks ago I almost bleed like I had a normal period so I figured that was my body's way of telling me it wanted to have a period with or w/o the hormones so I actually am taking the plecebo pills so I would get my period.
    I ALWAYS flare during my period which is one of the reasons why I started doing the contious birth control. I have had painful urination during my period for years and never knew why.
    So on top of all of this hubby and I hashed everything out last night. He is unhappy with sex life(not a big shock there) and I don't spend enough time with him. Of course I felt horrible so I cried my eyes out so now I wake up this morning with puffy eyes and a massive headache. We're okay by the way, he just feels neglected and I know he's right, you guys know how hard it can be when you feel horrible half the time. I'm going to make sure I spend lots more time with him and make sure he knows how much I love him. We watched the fireworks from our backyard last night for the local minor leauge baseball teams first game (they are almost right in our backyard, a couple of blocks away) and snuggled so it seems we're okay.
    So, lets recap, and go from top to bottom, lol, I have a head cold, sore throat, losing voice, puffy eyes, horrible head ache, bladder is flaring, oh AND I still have to go do all the grocery shopping and hubby wants me to help with getting the new fence put up in the backyard, don't know if that is happening. Ugh, I hate IC
    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

  • #2
    Maybe it will rain.
    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
    My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

    Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
    I post to encourage and offer total support for rescue instillations.
    Find me on facebook: L. Clark Thomas
    Louann

    Comment


    • #3
      I have to agree that rain would be nice.

      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


      • #4
        Christine,


        If you are on continous birth control you should of kept taking them and not had a period.. You body will sometimes have breakthrough bleeding but this is very normal.. If you stop the pill and have a period you are going to confuse your body even more and it will mess your hormones up..Trust me on this.. I have been on continous birth control for 7 years...Just keep taking them your body will adjust and you want have the miserable periods anymore and believe me I am glad I use to have the worst flares when I had a period just back then I didnt know what wasgoing on.. PM me if you need to and start them pills back..(((((((((Hugs))))))))))
        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


        • #5
          (((((((((((((((((christine))))))))))))))))
          so sorry you are in pain, and hubby is being a pain lol sending you big hugs
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #6
            Thanks everyone
            I don't think I'll need rain, he can tell that I have a spliting headache so I think he's going to leave me alone about the backyard. Both of the boys are home, Logan 17, Gage 15 and my adopted son from the next street over Derrick are all here plus some friend of Derrick's that I've never even met before. They have so many people working out there they don't need me.

            Ronda: Thanks for the advice about the bc. I honestly think I need to try a different one. My gyn just wanted me to keep on taking the ones I have taken for years and just skip the fake pills because she didn't want to add anything else to the already complicated mix by changing my bc. However I almost had a full period last month so it seems I may need a different pill if I'm going to keep on with the contious bc. I really need to go to the gyn but I've been spending so much money on Dr's appts between me and hubby and on meds I really don't want to spend another $25 to go to the gyn and I'd have to miss more time from work which I have been doing a lot of lately. I guess I'll call them next week and see what they want me to do.
            At least the uro called me in 30 vicoden yesterday so I don't have to be in pain all weekend w/o any pain meds.
            Hopefully I can get Griffin to take a nap soon so I can take one too, lol.
            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


            • #7
              Christine, I take Levlite, but they have a generic brand and it only cost 10.00 .. If the try to put you on zasmin<sp? I would decline I have heard it makes IC symptoms worse.. My GYN told me that...
              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


              • #8
                I take Necon 1/35 continuously. About every 10-11 weeks though, I do get PMS, start flaring more, then spot. So, my gynecologist told me when that happens, to just stop the pill for 3-5 days, have the period. It seems to work pretty well overall.

                Hope you're feeling better soon & I'm glad you & your hubby made up. It's so hard to have an IC flare and people upset at the same time.

                Hang in there
                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


                • #9
                  Hope ya feel better soon. I just wanted to know how your getting teen-agers to work -- $$$ or pizza??

                  Comment


                  • #10
                    Take care of yourself. Hope you feel better soon.

                    Comment


                    • #11
                      Originally posted by GriffsMommy View Post
                      I just need to say how much this is going to suck this weekend. I still have a head cold. I am losing my voice, which if any of you knew me in person you would know that I NEVER shut up, so losing my voice is not a good thing for me but maybe for everybody else
                      I just started my period. This is the first time I have had a period in months and they always flare me. BUT I'm on contious birth control but a couple of weeks ago I almost bleed like I had a normal period so I figured that was my body's way of telling me it wanted to have a period with or w/o the hormones so I actually am taking the plecebo pills so I would get my period.
                      I ALWAYS flare during my period which is one of the reasons why I started doing the contious birth control. I have had painful urination during my period for years and never knew why.
                      So on top of all of this hubby and I hashed everything out last night. He is unhappy with sex life(not a big shock there) and I don't spend enough time with him. Of course I felt horrible so I cried my eyes out so now I wake up this morning with puffy eyes and a massive headache. We're okay by the way, he just feels neglected and I know he's right, you guys know how hard it can be when you feel horrible half the time. I'm going to make sure I spend lots more time with him and make sure he knows how much I love him. We watched the fireworks from our backyard last night for the local minor leauge baseball teams first game (they are almost right in our backyard, a couple of blocks away) and snuggled so it seems we're okay.
                      So, lets recap, and go from top to bottom, lol, I have a head cold, sore throat, losing voice, puffy eyes, horrible head ache, bladder is flaring, oh AND I still have to go do all the grocery shopping and hubby wants me to help with getting the new fence put up in the backyard, don't know if that is happening. Ugh, I hate IC
                      ....and you're probably gonna have to give it up.


                      *sorry* Got emoticon happy there for a minute.
                      http://www.TheCraftyEwe.etsy.com

                      Comment


                      • #12
                        Okay...everyone else was serious so if my attempt at humor to put you in a better mood backfired? I'm apologizing in advance. *sigh*

                        Hope you feel tons better! *hugs*
                        http://www.TheCraftyEwe.etsy.com

                        Comment


                        • #13
                          Well, it gave me a laugh anyway... Christine is such a sweetheart, I don't think she'll be offended.


                          BTW, the new IC team shop looks great! I know I'll be making a few purchases soon. Are you going to do an ornament for Christmas?
                          Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                          Wishing you happiness and good health, and all the best out of life.

                          Peace, Carolyn
                          ___________________________________________________

                          Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                          On the Beach with IC

                          Comment


                          • #14
                            Thanks all, I'm still feeling kinda crappy, voice is going (if I'm lucky it will be totally gone by tomorrow? then I won't be able to talk on the phone w/ customers and my boss will have to find me other work to do? lol) Headache is finally gone, flare still going on but I'm getting through it.
                            Angie, we really don't have to do anything to get teenagers to work, dad says do it they do it. I did get frozen pizza at the store yesterday morning and made that for lunch for them but they didn't know about that before they started working.
                            They torn down all of the old crappy wooden fence, including the posts that were cemented into the ground. I think they dug the holes for the new posts, I'm not sure though, mowed the lawn. They got a lot done yesterday but I think they're doing more today.
                            Moonheart, I don't get offended easily, it was cute, don't worry about it.
                            I probably won't be on as much as I need to spend more time with hubby and family.
                            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

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