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  • #1

    The Ball is Rolling

    I called the doctor today to start the ball rolling to get a date for bladder removal. I have really prayed, researched and discussed this from every side and I know that it is the right thing to do. So here we go.
    This has been a year and it is only June!
    It began in January with the death of my sister on whom I relied for all my medical advice - she was a nurse. That is still very painful. I haven't had much time to deal with that, but I will. I am moving at the end of this week and changing jobs. I will be living with a whole different group of nuns from the ones I've been living with the last 7 years - and I decide to have surgery!!
    I will have a week at the beach to rest a bit after cleaning out the house and preparing my office for a new principal. Then I have a week of retreat and a few days at my brother's house for a family party. We have a meeting of all the nuns in our community in the United States at the end of the month and then I go to my new house. I'll take a week or two to get settled there and then, hopefully the surgery can will be set for sometime during the last weeks in August. Does that sound like too much, too soon?
    I hope not.
    It's been long in coming.
    Peace,
    Maggie
    Tags: None
  • #2
    I've been thinking of you and hoping you'll be able to get your surgery scheduled quickly when you're ready. You have a lot to deal with right now, but it sounds like you are making the decisions that are right for you. Will you be dealing with familiar doctors for your surgery?

    Sending 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

    Comment

    • #3
      Boy, that week retreat sounds like a wonderful thing sandwiched in between all the other busy-ness. Good luck with everything - lots of changes, huh? I'm glad you're moving closer to the removal.
      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

      Comment

      • #4
        Yes, Donna. I finally decided that I wouldn't go with the doc that did the second opinion even though he was closer to family and the place where I will go to recouperate. I have the highest confidence in my doc and feel very safe in entrusting the surgery to him. I have lots of friends here in North Carolina, too. They are not family, but pretty close to that. I'm nervous, but I'm taking one day at a time. I'll get everything done.
        Thanks for your concern.
        Maggie

        Comment

        • #5
          Dear Maggie,

          You have a lot on your plate right now. The only thing I can think of right now is that it is imperative to have someone taking care of you after the removal.

          I hope you get through everything that needs to be done before the removal. We are all here for you as you go through this journey!



          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

          • #6
            Best of luck
            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

            • #7
              Wishing you well!

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

              Comment

              • #8
                You need to go with your gut instinct on who will be better for you. Personally I think it is good that you have lots to do beforehand. This way you will not have time to dwell on the upcoming sugery because you will so busy. As for aftercare, just make sure you have premade foods that you can heat up yourself or prepare easily, like cans of soup. Many people have homehealth nurses come in and check on them. Everyone is different and we all heal in different ways. I never had extra help after any of my surgeries and I had two small children. So if you can get some help it is nice, but many people can get by without it.

                Comment

                • #9
                  I'm so glad you'll be dealing with a doctor you know and trust. That can be very important.

                  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

                  • #10
                    Wishing you the best of luck with your upcoming surgery. You've clearly explored all of your options and I trust this is right for you. I'm glad you will have people around you to help out at you recover. Take care.
                    mom_in_ma

                    Comment

                    • #11
                      (((HUGS))) and prayers coming your way, Maggie.
                      Sharon

                      Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                      Where I can be found most days.



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

                      Link to the IC Diet:
                      http://www.ic-network.com/diet/


                      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.

                      Comment

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