Still here

I'm sorry for lack of updates recently. I'll be completely honest and say that I am having a pretty tough time coping at the moment and because of this don't have a lot to report or really feel much like talking.
The thing I hate most about the black moods I seem to get lately is how they can come on so quickly and completely engulf me. Thankfully they can lift just as quickly. I have discussed these lows with my team who tell me that they are very normal but "normal" doesn't help at all when I am feeling at my worst. What started as a low in mood last week has lingered into a general depressive feeling the last few days, it is horrible to feel so down and teaful. Waking up and facing the same each day as well as trying so hard to continue with my weight gain (I havent had much change lately, reaching a plateau and last week lost 0.3kg) is really hard. I have also been having lots of problems with my stomach, feeling very sick most of the day and really having to force food down which doesn't help my mood or my discomfort.
I've also had my 19 month of waiting anniversary this week. It is so hard to look back at the whole of this time and think that out of all those days I have had one call, the possiblity of new lungs for a few hours one night.
I hope to be back very soon feeling much happier again, but please bear with me if you dont hear for a little while or if I am not so talkative as usual when I chat. I will get there eventually, but in the meantime, I'm still here.
Much love to you all xxxx


  1. love you poppet xxxxx

  2. I'm sorry you are feeling down at the moment. The darkest hours are those before the dawn, so hang in there. You will get the call.
    Try ginger things for the nausea and I recommend Jamie's Lemon drizzle cake for weight gain!
    lots of hugs

  3. Hey Pretty Girl...

    I don't know your face -- but right now I see you with my heart...

    The highs and lows happen -- as you obviously know... You're waiting for something that can be beyond amazing, and it can't get here fast enough... I don't know how to get through it all -- but you do... We do... I don't know whether to fight the black mood engulfing you, or whether to let it engulf you and take a brief dip in that pool of despair... We all deal with that differently -- you do what you have to do...

    And sometimes it's good to start to look at your food the same way you look at your drugs... It's no longer a pleasure to eat, though sometimes things are wonderful... It's what you need to survive...

    I hope you don't wait many more months -- it's hard to look back, but looking back shows you what you've conquered... I didn't think I'd survive six months -- I did, then I looked back and realized that if I survived that, I could surely survive the next few... But, like you it was more than a "few"... Yet, you can survive...

    I learned to take it one day at a time -- the day will come when you're dealing with that "real" call, but you can't know that day -- you can't plan your future -- you can only survive today successfully... Eat a little more than you wanted -- get some exercise... Sometimes you won't and the day will be a "bust" -- but get over it and deal with the new day...

    I'm glad you're still here, Tor... I hope it comes soon... I was in your shoes nine years ago -- I'm not now. But, it's been nine years and this breathin' stuff with "real" lungs blows my freakin' mind every freakin' day... I truly wasn't prepared for how it would feel to breathe "normally" -- it's been almost nine years and I think about it every single day... I want you to feel what I feel...

    I have a website with some of my story at www.ClimbingForKari.org and I blog about organ donation at www.ReviveHope.com

    I waited a little longer than normal, Tor... I hope your call comes soon... Mine has been an amazing journey -- and I would go through it all again, and do everything over again, to live the life I have now... I hope your experience is more amazing than mine...

    My email is at the bottom of my ClimbingForKari website if you ever want to touch bases...

    You take care... You hang in there buckaroo...



    Steve Ferkau
    Chicago, IL

  4. ok, so i personally would grab one of these lemon drizzle cakes and read steve's comment over and over again. like he said...just find what works for you.
    Praying hard

  5. Thanks, Laura... I'd forgotten to mention -- that Jamie's Lemon Drizzle cake sounds damn good to me too!!!

    With a couple pats of butter on it (and an extra pancrease capsule)... I'm thinking that would be epic...



  6. Hi

    Thats fine if u dont want to blog, you do whatever feels right for you.
    You have my number still so always text!
    Im glad you do talk to the hospital team even if it helps only a tiny bit.
    Im hoping and hoping this is your year!
    lots of love xxxx

  7. Sending lots of smiles, hugs and love your way. x x

  8. Happy Valentine's Day!!!
    Hope you are spending it with the people you love.

  9. Much love to you pretty lady as always. Hope this low mood lifts soon for you. xxxx

  10. Just wanted to stop by and say hay, and i hope all is well with you. no need to post i understand the feeling of just not that much to say at the moment. we are all out here sending you our bestest thoughts and lots of prayers.
    be well