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I am So Thankful for All of You!

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  • I am So Thankful for All of You!

    First of all I want to say thank you to all who have given me support through my struggle with IC. I have found such comfort here. But I have made a decision to go off my meds, after going to my GP on Monday, and he wanting me to add Paxil to help gain weight and taking it and feeling worse, so neasuated that I couldn't eat, I am tapering off all my meds, and sticking to the ic diet to see what happens. I have tried every treatment known to man for IC with no success, last hydro 2 weeks ago shows no worse but not any better. I look back and before being put on all these meds I actually felt better than I do today. So wish me luck. I will always have my pyridium and lortab here in case I get in a terrible way, but I hope that I will not have to even fill my scripts.

    I have just decided to take control. I will do my home instills also, but those are not entering my blood stream, so I don't think they are messing with my body.

    So again, thank you all for the support and great advice. I will check in here every now and again to see how everyone is doing. I feel I have made alot of friends here. Take care and hopefully one day we will all be pain free.


  • #2
    ((((((((((hugs)))))))) and good luck!!

    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:

    Diet Reference Sheet:

    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.


    • #3
      Your very brave--I wish you the best. angie


      • #4
        You really are very brave. I understand about paxil making you feel worse. I took it for about 6 months and had a terrible time coming off of it. I hate to see you sounds like you are leaving us, and I'm not sure why. No matter the reason, I wish you luck and hope that you do keep in touch with us, and let us know how you're doing. I hope that you feel better discontinuing all your meds (except the pyridium and lortab). I'll miss you, so please keep in touch. Know that we are here if you ever need anything, and if you do feel better, please let us know that too!

        Good luck and !!!!

        *IC-- Summer 2004; PFD--October 2005
        *Fibro--Fall 2000; CFS-- Fall 2000
        *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

        Total Abdominal Hysterectomy--adenomyosis--9\08

        04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


        • #5
          I just decided that I needed a break from focusing on my illness. I joined a message place, called Message Envy and went last night for the second time for reflexogy, it really helped me. I am already starting to feel better, getting all the toxins out of my body, yesterday I did pretty well only at to take 1/2 of lortab twice. My goal is to stop that also, but I am doing that slowly, so I don't have withdrawls or anything.

          I was feeling so bad from all the meds, etc. and started thinking back before I was officially dx'd and I didn't feel this bad, I really believe that part was due to stress, going through a divorce, daughter quitting college, etc. But I finally am getting my stuff together, other than money being tight, and my goal is to get a job at least 30 hrs. a week this fall. I just told my GP I want my LIFE BACK and I decided that I have to make it happen. So I will continue with my messages and looking for acupunturist and back to straight tylenol and tens unit.

          I will be here every now and again, but like I said, part of this a mind thing, and I believe if I am not focusing on this illness, maybe just maybe I will feel better. I had the greatest psychology teacher in college, he was dx'd with cancer and given 6 months to live, he practiced mind over body and taught us, and I am trying that also. He was still alive 6 years after the dx'd.

          Thanks everyone. I love everyone here.


          • #6
            Not to poke fun, but the IC diet is the best way to gain weight that I know of! I am so proud of you for taking a stand! Good luck and I hope this helps you!

            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