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Journal Entry (long)

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  • Journal Entry (long)

    I know that this is ugly, but it is a real experience I had today and while I should probably have kept it private and in my personal journal, the ICer in me knows that this is a very appropriate place to share it as it may help another sufferer. Brief history: I have suffered with IC most of my life, got an official diagnosis 4 years ago and recently had a short remission in which I relished. My current flare has lasted about 5 weeks and is most likely more of a Pelvic Floor flare than IC. Nonetheless, I saw my uro today for a rescue instill hoping for any amount of relief. Here is the story of my experience:

    I lay still and rigid on the clinic table with the rustle of paper beneath me and a paper sheet covering my naked second-half. I try to focus solely on the book that I've brought as a deliberate distraction, but down inside, my mind and my body know what's coming. The nurse is polite, but seems a bit apprehensive about having to manipulate my anatomy to perform the task before her. She is new here- I know this even though she hasn't said it. I am more aware than she that the part of me she is trying to infiltrate is illusive at best, not to mention tiny. I'm not about to tell her so and offer her another reason to be nervous. Instead, I stare straight up at my Kindle and pray that she can do this quickly. Breathe deep, tell "those" muscles to release their strong grip of resistance, let out the deep breath. OOOUUCCH. She was close because I feel the sharp, stabbing pain that is typical when someone is probing at you with a catheter. She tells me my bladder is having a spasm. "I'm waiting for it to stop" she says. Lady, I've been waiting for years for it to stop! She gives it another try, then another and again and again until she has decided that my urethra is her mortal enemy and relinquishes. She retreats to the hallway to get back-up; someone she calls Rachel. Urethra- 1, new nurse- 0. She never returns, nor does this nurse/general named Rachel.

    My NP, Leslie is summoned to the battle. She proceeds in the same manner as the new nurse and is unsuccessful. After several stabs- there it is! the pain that stops your body from getting a full breath and causes all of your muscles to tighten with disdain. Sharp, stabbing heat encompasses my nether regions and I assure Leslie that her mission has been accomplished. "No." she tells me, "it's still not in." Again, I summon just enough breath and courage to insist that the latex tube has indeed fully invaded the most tender part of my body. She still continues to jam it inward and upward in many directions searching for the small tunnel that is perfectly hidden from her sight. I take several more sharp inhales of stale office air and place my hands as close to my injured areas as possible, then firmly inform her again that I am certain of the placement of the catheter. She's still unconvinced, but decides to attempt the instillation of the medicinal cocktail she's prepared. What-a-ya-know. It really wasin there.Finally, she continues the treatment that has just traumatized the part of me that was already hurting so badly.

    In mere moments it is over and Leslie and her student shadow have left me to recover. I am writhing with pain and the flood of emotions that I have tried to stave off are welling up and threatening to break the dam of pride I have spent months building. Fighting back tears, I aright myself and ready to make a speedy exit. I make no return appointment because I've just been reminded why I put off my visits to the uro in the first place and it has become ultra clear that, while I respect my uro for all of her credentials and learning of her profession, I must become my own advocate in seeking out the most beneficial treatments for my chronic conditions. I am on a journey to living with chronic pain and I am standing at a crossroads. I have options. I must make room for this grouchy bedfellow. Today, I am resting and plotting my next move like a chess pro. I am looking at the game board and trying to anticipate each potential move and the results it will yield. Only, it's tricky playing an opponent that does not play by the rules!
    "Sealion woman she drinks coffee, she drinks tea...and a rooster crows"

  • #2
    So sorry

    All I can say is that my heart goes out to you. I have suspected IC myself but one of your fellow patients with IC doesn't thing so. No one should have to suffer with discomfort and pain and have their very, very real experience discredited. I only know your user name but I will keep you in my prayers as I have asked my family and friends to do as we try and figure out what is going on with me. I wish you a pain free and symptom free day!!!! the very least. Your post is not is real and people need to embrace you.


    • #3
      I hope the medication instilled will help after the initial discomfort.

      Stay safe

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      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        Last time I was in full retention, I too was given a new nurse.

        I am very specific how I am to be cathed, smallest cath, slow drianage, freezing gel in urethra first, anti spasam meds etc.

        This new nurse was this is not how we do it, I will have to check with the Dr. I say ask one of the reg nurses, but no she has to call the Dr. I am in agony, as my bladder is distended way beyond what it should be, I am fighting back the tears.

        She gets the okay from doc. and proceeds to put freezing in my vagina, and then the cath in my vagina, now I understand this is easy to do, but would not listen to me when I said she had missed her mark.

        I guess being new she didn't want to ask for help, so this charade went on, at my expense.

        Finally a nurse who knows me came to the rescue, when she realized it was taking new nurse way too long.

        It sure dosen't make you want to go back.

        Time to learn to self cath.

        My are with you all. May you all find a way to peace and joy in your lives.