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Interstim Diary-- Final Installment (for now)

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  • Interstim Diary-- Final Installment (for now)

    Well, I went for my post-permanent implant appointment with Dr. Evans today. When I began this diary, I knew in advance that this would be the date of my last entry in it as long as everything went according to plan. Time has flown, and I've gone through all of this, and I wonder sometimes if I'm still under anesthesia, about to wake up to a different reality... but I hope I don't, since this one has been so good to me.

    Anyway, Dr. Evans peeled away my dressings and I finally saw my incision -- a couple inches long and sutured straight as can be across my left upper buttock. He and I both laughed with delight at how amazingly healed it is already; it was as clean as could be, no evidence of discharge or bleeding at all. Not even a hint of redness. That meant it was time. Time to make it absolutely, positively final, time to make the InterStim process complete. It was as if, as long as the device was held in there by a thread, it wasn't quite real... just a dream I had where I didn't have to pee, a dream that could end at any time, the brass ring just out of reach. As soon as the thread came out, though, and my skin held onto the metal on its own, as soon as the metal became enclosed by only me, it would be finished... it would be mine, over, done, the dream realized, the brass ring in my hand, my body forever changed.

    He took the scissors and clipped through each suture with deft hands and then pulled each thread out quickly with forceps, closing the device inside my left haunch forever. He did it clinically and professionally, the way he has done it a hundred or more times; I closed my eyes and did it the way I have only done it once. Both surprised by and expecting the pinches as the sutures were cut, both surprised by and expecting the sudden rush of feelings from such a simple, silly act -- feelings of accomplishment, victory, permanency, and yes, yes, there it was... a tinge of mourning for a life without mechanical assistance and remote controls, now long gone.

    When he was finished he swiped an antiseptic on gently, almost whispering, "This may burn." Then he taped the incision vertically with a few small pieces of stiff tape, to give it a little support in the days to come. "You can do what you want now," he said with a smile as I pulled up my pants. I smiled back.

    I can do what I want to now. I can take a real shower, and maybe I can drive somewhere without having to pee every fifteen minutes. My husband and I can have sex again, and maybe I can sit through a meeting without sneaking out the back to find a restroom.

    When I got home, I slipped down my sweatpants, lifted my shirt, and looked over my shoulder into the bathroom mirror. I saw the incision and the tape. I had bled a little on the ride home, a few dark red drops running down my butt cheek and drying in place. Then I looked up at my face and thought I saw a glimmer of something in my eyes, something that hadn't been there in a long time. Hope, maybe? Or perhaps that new strength that comes from doing something incredibly hard but coming out on the other side okay.

    I fingered the blood trails on my back end and hoped that this would be the last blood I would ever shed in the name of IC. I don't know what the future holds but I hope that it is indeed the last actual blood...but I know I will always shed that metaphorical blood whenever I flare, whenever I hurt, whenever I hear someone else hurts. I will shed it whenever I fight for those with IC, which I do gently every day by wearing my bracelet, and which I do fiercely other times when I write and beg TV, newspapers, and magazines to tell our story. Because, while my diary is finished, I am not. We are not. We will not be finished until a thing called InterStim isn't needed anymore, because a thing called a cure will have replaced it.
    ****
    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.

  • #2
    Jen...You brought tears to my eyes reading this. Like I have already told you, I am so happy that this has worked for you. Happy really isn't the word for the way I feel. Thrilled is a better word.

    Love the picture of the two of you. It is good to see both of your faces, again.

    Hugs...
    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


    • #3
      Jen,
      You brought tears to my eyes as well. I am so filled with emotion over this whole journey...yours AND mine, really, as I felt we've kind of done this together, with me just a few steps behind.

      I am so glad that you are doing so well with the interstim. I know there was a time not so long ago that you were adamant against it and chose it because it seemed to be the last viable choice...but it was a good one. Because every day that goes by that you feel a little more "normal" and can do more normal things will have made the journey entirely worth it all.

      Of course this is not the end of your IC journey, but the start of a new chapter...hopefully a long and happy one!


      ~Claudia

      "A heart is not judged by how much you love; but by how much you are loved by others."
      ~ The Wizard of Oz

      "If I ever go looking for my heart's desire again, I won't look any further than my own
      back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


      Comment


      • #4
        I am so happy for you and I hope that your success continues for a long time. I so remember the hope that you saw in your eyes. It is something so precious that others without IC could not understand. Even though I am having mine removed I will continue to be supportive to those that it has helped and to those with problems. I know it has done wonders for many. And just as I am with those that have success I have had nothing but prayers and hopes from those of you to me.

        Good luck again and by the way :woohoo: less time on the
        God grant me the serinity to withstand the days ahead!!!

        My myspace link...
        www.myspace.com/patricia_luvs_matt


        Patricia

        In Memory of My Father (Lawerence) 1/25/2007

        Procedures:
        Interstim Sept 2001
        1st InterStim Removal May 2005
        2nd Interstim Implanted May 2005
        2nd InterStim Removed March 2007
        Hysterectomy 1999
        Tubes Tied 1997
        C-Section 1996


        Me and my kids


        Taylor (my daughter) Me and my daughter My son Cody and Taylor

        Comment


        • #5
          I am so happy everything turned out so well for you. Thank you so very much for your interstim diary. Your final entry made me feel so hopeful for the first time in a long time. By the way, you have a great talent for the written word. BRAVA!!!!!

          Comment


          • #6
            Jen,
            It is so great to hear how well you are doing and you are healing so well. That was a wonderful post to read. Hope you continue to heal great and spend much less time in the potty .
            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
              I am so proud for you and your success. That is wonderful

              You know.....you "REALLY" should consider writing that book. I loved reading your post. I felt like I was standing right there with you. That is what well written books do for us.....take us to that moment that is happening in the book. You have a true talent for that and maybe that is what this journey with your Interstim was meant to help you see (other than the obvious health issue with it) It was meant to give you hope and a look at the talent within you. You are gifted
              Miss Bessie

              Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

              Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

              Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

              Comment


              • #8
                Beautifully written Jen. I'm glad the Interstim is helping you so much.
                hugs,
                Janie

                Comment


                • #9
                  Jen, that was so beautifully written! (Remember my last career change suggestion? ) I am so happy with you, and I share your dream for The Cure.

                  BTW, which is right: "happy with you" or "happy for you?" That is one expression I am always mixing up between the two languages! I don't know why I shouldn't say I'm happy with you, sharing your happiness, but I think that's the one I was always getting scolded for saying. Now I just usually say, "Mazel Tov!"
                  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


                  • #10
                    Thank you all for the support

                    And thank you, thank you for your compliments on my writing. I love to write and always have. octoberfarm, perhaps you are right. Perhaps this quiet, alone time after surgery has helped me see that I am meant to write, perhaps part-time at first, and if people enjoy what I write, perhaps full time later.

                    I am getting stronger physically and emotionally lately. Because of that, I am closer and closer to beginning the process of another dream that I have hidden beneath my dreams of being a scientist, which IS writing a book. I have buried that desire for a long time with excuses like "I don't have time" and "I am not good enough" -- but I feel I am ready to throw those out the window and find out what I must do to make this one thing happen. Perhaps being a scientist won't work out, I don't know that yet, but I really want a book to work! I don't know yet whether it is a textbook chapter in a science text, a nonfiction book about women in science, a novel, or even a memoir type thing about my IC and living/working with chronic illness. I know there are already several great books like that, but none really consider and discuss having a career with a disability like this -- that might be an option since so many ask me how I do it and how they could do it too.

                    Carolyn, I like "happy with you" since that is what we are actually feeling when we are saying "happy for you." A more accurate description of how we feel when someone we know has a joyful moment!!
                    ****
                    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


                    • #11
                      That. Was. Awesome. And not just this entry - all of them. As I read I imagined myself having to face Interstim and how much reading your detailed story would help ease my fears and help prepare me for the whole thing. I think it's wonderful you've put it down "on paper" for others. I hope it can be saved all together somewhere on the site so others can use it as a source of information and hope.
                      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


                      • #12
                        I am glad that you are having great success, and contiue to do so.
                        'The will of God will never take you where the Grace of God will not protect you.'

                        Comment


                        • #13
                          Merci, Jen! Et Mazel Tov, aussi!
                          Last edited by Berkshire Road; 02-27-2007, 02:14 PM.
                          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
                            Lovely, lovely, lovely posting!!!! Wow!
                            Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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                            Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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                            • #15
                              And another "WOW!" from here.

                              Donna
                              Stay safe


                              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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                              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.

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                              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

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