Saturday, July 24, 2010

Progress, Anger & Hate

Today was a good day in regards to Jim's health. All the med changes on my prior post have been done, he has advanced his diet with no problem (don't jinx yourself, Denise)! His last meal consisted of a turkey sandwich,

So, why is it that I am so angry? I feel like I could run and run and run and never stop until all of this just well...goes away! I am ANGRY that I am sitting in a hotel while Jim is in the hospital. I HATE that we have to be at the hospital. I get ANGRY when I see other people going places and enjoying life without a care. I.HATE.IT!

That's it.


  1. Glad to hear the positive progress :)

    It's ok to be angry. But just a bump in the road, the positive thing is...NEW LUNGS barely 2 months old. Once things level out, full steam ahead. Just think of how you felt 3 months ago.

    Hate you have to be there too, sucks. We're with you here AND there...always. We will see you both soon. Positive thoughts sweetie, love you!!! xoxo

  2. I agree with HJ. I was not even out in the real world until I was over 3 months post. It takes a little while for the body to figure out all the trauma and changes. You're doing great! I can only imagine the frustration though. Before you know it things will be smooth sailing.

    keep on keeping on!

  3. Yes, it ís only been 2 mounths.
    But still, I completly see where you're coming from.
    You want to start ENJOYING instead of fighting al the time.
    In your 'post-transplant-dream' there is no room for errors or bumps in the road.
    I can so, so, so understand that.
    Wish you all the best and think of you both.
    Love from Holland!

  4. amen, denise. i don't have any amazing words of wisdom to share (especially since i'm right there with you, although in a different way dealing with rejection, etc). i guess the best i can say is it's okay, normal, and intensely human to be disappointed and even angry when expectations don't line up with reality.

    yes, we all knew that transplant was going to be a long and probably bumpy road, but in the back of our minds i think we were all hoping for that holy grail of a miracle recovery -- smooth sailing all the way and sayonara, CF lungs! and while the only option left is to just pick ourselves up and keep going and know things will get better with time, that doesn't mean that the disappointment or emotions will magically disappear. the simple fact is we're so "in the middle of it" right now that it's hard to even think straight sometimes, much less keep those tough emotions from sneaking in from time to time.

    for what it's worth, i think you and jim (both) are nothing short of an inspiration -- anger and all.

  5. From my and Vicky's experience the first three months were the hardest thing we ever had to do, physically and emotionally. For me it was just the relentless nature of the problems, the pain, the lack of sleep, not being able to lie on my side for 2 months, the nausea, side effects of the new drug regime... Even though the discomfort was often fairly low level and manageable it just never really went away. For Vicky it was all about the anxiety, responsibility and the emotional drain of seeing someone in pain or discomfort and not being able to help.

    But it does get better. Things improve. Life becomes normal. And then you start realising how amazing it all is, how much you've gained. Every day you do an activity, like clean your teeth, and think, yep, that used to make me out of breath. You realise how limited you were, how the CF crept up on you over 35 years and every little adjustment downwards was coped with and got used to so you didn't really clock how bad it was getting. Then suddenly you're free to do so much more.

    Just believe it will be great and hang on in there...