Frustrating Decisions…And Not Giving Up

by on Thursday, May 23, 2013 13:42
This entry is filed under: Coping/Support

Hi, guys. I’ve officially scheduled the first of three surgeries to re-vamp my J-pouch.  The first is a loop ileostomy that we hope will give my innards time to cool off and chill the hell out.  Not gonna lie, I had myself all amped up for two surgeries after the exam under anesthesia (EUA).  When I found out it was actually three, I had a pretty major Lizzy hissy fit.  When I confessed this to my therapist, she asked, “So what does a hissy fit look like for you?” I thought about it and replied, “Well, I was mad. I was just…pissed.  I don’t know why three seemed so much worse, but it did. It felt like another nail in the coffin.  So I got really pessimistic about the whole thing, which is not normally how I operate. I kind of thought, ‘Fuck it all, I’m screwed no matter what I do, nothing has ever worked for me, why would it magically change now?’ I vented to Rob and many friends. I threw my hands up, pouted and said, ‘I’m not doing it! I can’t put myself through this crap again. I’m done. I’m sick-this is what’s meant for me. I should just stop trying and let whatever this is take me over and give up already. I’m too tired to do this again.’ I screamed. I yelled. I was alone (except for my dog, who should by now, be used to these occasional outbursts and possibly think I’m insane). I was angry about all this disease and surgical complications have taken away from me, despite my general sunny attitude about them. I was mad about not being able to physically do yoga for two months because my abdomen hurt so badly, was swollen, and I was too fatigued and doped-up on pain pills to do much. Walking was hard enough, downward dog was not happening.  I was frustrated because yoga is the main thing my Type-A ass can depend on for calming, sure-thing feel-good results.  I felt a great deal better after the EUA and was able to go back to my practice-I just modified it a lot.  Realizing that I’d spend the next year and a half getting cut open, guts re-wired, healing, wash, rinse, repeat, and having little time between recovery to do anything else but prep for the next surgery was just more than I could bear.  A few weeks ago I was about to take the GRE, start graduate school and FINALLY move on with my life.  Stupid IBD/Pouch problems were there to thwart me again, and I almost decided to let them win.”

After my hissy fit was over (it lasted a little over an hour, FYI), I got my crap together and started praying again.  I prayed for an answer I didn’t have. I had to decide this. Doctors could make recommendations and lead me in what they felt was the right direction, and although I had guidance from two physicians I trusted, the final decision had to be mine. At that moment, for lack of a better pun, I didn’t have a gut feeling at all-I had frustration and a “why me?” attitude.  I had been meditating more during my respite from yoga-something my favorite teacher suggested, but it felt like the next best thing to a full asana practice.  When the opportunity to meditate with monks from a Tibetan Monastery arrived, I felt the universe at work again, I jumped on the chance and went.  It was a truly humbling and awesome experience to sit in a room with these men, who have devoted their lives to their spiritual practice-to spreading peace and compassion, and share in a part of their daily routine.  A much-needed scroll boasting a quote from the Dalai Lama told me just what I needed: To never give up.  So, after that divine intervention, hope started to find its way back into my psyche.  I decided trying again is always better than giving up.  I can’t lie, I am tired. My body is getting fed-up with all of this, and certainly, so is my mind.  I do try to take good care of myself. I seize the day when I’m feeling spunky, and I’ve had a lot of adventures in my life.  The thing is, I want so many more. There is so much I want to do. So much I feel I need to do-for myself and for others.  The frustration of finally realizing that, starting down the path, and getting knocked in the dirt again was just infuriating and very disheartening. But, I have a strong heart. I am resilient, and I’ll be damned if I’m going to let this physical disease disrupt my plans and squelch my spirit.  I try to always remind myself that I have a choice.  This disease continues to test me, and it probably always will.  Giving up seems easier sometimes, but it also seems boring.  I just keep thinking about how sweet my success will be and how amazing it will be if this surgery works.  It’s one those scenarios where you have to prepare for the worst and hope for the best.  I’m hesitant to be too optimistic, but too stubborn to give up.  Thank you all for your words of support and encouragement.  This community, my friends, and family keep me going, and of course my faith.  I’ll be sure and keep you posted as this adventure unfurls. Be sure and send me lots of love and yummy J-pouch vibes.

 

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9 Responses to “Frustrating Decisions…And Not Giving Up”

  1. avatar

    Doug says:

    June 2nd, 2013 at 5:47 pm

    Liz,

    When is your first surgery scheduled?  We’ll be thinking about you.  Keep us updated!
    take care,
    dougl

    [Reply]

    avatar

    Lizz Reply:

    Hey, Doug! It’s in a WEEK! AH! I’m actually ready. I want to get started down this road. Just trying to take inventory of what I need to take with me for a lengthy out-of-town hospital stay. So far I have LOTS of wet wipes and a toothbrush. lol. Thanks for the well-wishes. Liz

    [Reply]

  2. avatar

    Holly says:

    July 5th, 2013 at 10:20 am

    Dear Liz,

    I hope you are doing well. I came across your story while researching information for my 16 year old daughter. She is also in the .06%. Diagnosed with UC at 13, proctocolectomy at 14, stage 2 and 3 IPAA last spring/summer respectively. She developed complications within 4 months. Her excellent GI at UCSF has referred us to, as you call him, “the Pouch Guru”. Reading about your experiences with Dr. Shen and even your photo of CC has given me hope. You are truly amazing. Thank you for being so brave and honest and sharing your story. I have laughed and cried with you here. Understanding all too well, so many of your experiences. We too have cried, denied, angered, found hope and triumphed only to start all over again. My daughter have taken some of the ugliest of medications, tried homeopathic treatments and of course, on going prayer. I will be keeping you in my prayers that you are recovery nicely from your surgery and are back to yoga and all the things you enjoy most.

    Please post soon and let us know how you are doing? Blessings to you and your mother, Holly :)

    [Reply]

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