Thursday, 9 August 2012

You're never too old for a babysitter

I'm on my own.

Brad left for Liam's wake and funeral. My heart is with him.

He took the G-man out really early so I wouldn't be rushing as soon as I got up. When I woke, I immediately filled my O2 tank and did my aerosols. By that time I figured I was invincible and strutted out the door with Griffin.

(Strut: to walk with a vain, pompous bearing, as with head erect and chest thrown out, as if expecting to impress observers)


Did someone sneak into my bedroom and attach a life-sucking, energy-extracting apparatus to my body while I was sleeping?

Every. Step. Felt. Like. This.

Every. Breath. Felt. Like. This.

To top it off, my red umbrella fell out of my O2 cart while I was crossing the street. If it weren't for the kindness of a stranger, I would have had to start directing Toronto traffic. The good news is that I do have somewhat of a commanding presence as I'm built like a pool noodle.

Thankfully, Marta, one of our park friends, came out shortly after I did and helped me out. As of course, Griffin would chose the furthest possible dumping spot from me - approximate distance, 100km. 

It's crazy how I can feel so good sometimes. Sometimes I even feel like I don't deserve to be listed. I look around at all my fellow transplant 'waitees' and I feel so guilty and it rips at my heart that I can't give them all new lungs.

Then I remember, I'm feeling good because I haven't done anything. I haven't exerted any energy. I'm sitting in a chair on the balcony, or on the couch watching tv. I'm having a good day.

The tide turns very, very quickly when I attempt to have a shower, make the bed, use my brain (did I really just type that??) or take my furry boy outside.

Then I think, okay maybe I do deserve to be here. Maybe I do deserve new lungs. Maybe, just maybe, even as much as everyone else here. We are all fighting a similar fight. We all just want to simply live. Live longer. Live a better life. A healthy life.

So maybe I need to listen to all those voices (Brad, Red, Pamela, doctors, etc) and stop thinking I don't deserve it as much.

We all have something though, right? We're all a bit screwed up. For instance, some people like to pretend that the paparazzi watch their every move (teeth brushing included). Some like to pretend that certain red kicks make them some sort of superhero. Some like to pretend that being crowned princess, in the park, on her birthday, really does make her a princess.

All kidding aside...who wants to mess with this


I have to admit...I was babysat today.

I am all by my myself and can't be trusted to not rip around this city making trouble. And I had sooo much partying and random destruction planned.

Pamela and Carman picked me up and took me to physio. She's one demanding woman, wouldn't even hear of me walking from the entrance to physio. She can push a mean chair.

To be fair, I've been spending more and more time in the chair, as my body doesn't have the energy to move (either that or I'm lazy) and I was having a craptastic breathing day. So points to Pamela.

I did another 6 minute walk test today. I gave it like it be London. It was a little much when a crowd gathered and the tv crews came storming in. Next a podium appeared and then...something gold was shining so bright I lost visibility.

Back in June I walked 315 metres. Today I walked 277. So apparently the above story is a bit fallacious.

Keep training Squeegee.

Fact: Squeegee is a nickname given to me by my dad when I was just a sweet, innocent, charming little girl; just as I am now. Except I'm grown. Physically. And mentally some days.

I was really good today. Only got busted 340 times for talking during my workout. There is an unofficial rule at physio (devised by Pamela) that you need to be quiet to conserve energy for your regime. Makes sense. Except I tend to not conform. Plus I never shut up. So they made me pay:

Pssssssssst, it was Pamela's toonie

After physio, Carman bought me STARBUCKS. I figure he was trying to persuade me to be good. Much like you do with a child throwing a tantrum.

Then we picked up the G-man and headed back to Pamela and Carman's. Pamela and I took him for a walk while Carman stayed inside practicing his squatting technique. It was my very first stroll down the catwalk with a rollator:

The Rolls Royce of Rollators
Taking care of my boy

In all seriousness, thanks guys for babysitting! Brad will compensate you upon return.


  1. Holy Fudge, Squeeg!!! (I recall from a prior comment/note that you might have yung’uns reading, so I have to refrain from profanity…) You sooooo deserve “real” lungs.

    But I know where you’re coming from – I still question, now and then, whether I “deserve” all of the amazing things I’ve received… I think we deserve life, and the chance to live, free of pain and discomfort and fear – though we never really get rid of fear. And there are moments now, when you’re vegging on your sofa, eating chocolate and cuddling G-man and B-rad, and you’re thinking, “this doesn’t hurt – I could take this forever…” And maybe those are the moments when you might think, not whether you deserve new lungs, but whether there is someone more deserving than you out there who needs them sooner. Alls you have to do is get up and walk across the room for another piece of chocolate and you realize how fudged up that thought is. I want to meet you someday. You will need new lungs for that to happen – so please remain deserving of them.

    I like following your journey. It takes me back because so much of you and your personality reminds me of what I’d been through – you know it’s really screwed up, but life can still be really good while we’re going through this. There are moments that are frustrating when we’re going through them – but right in the middle of them, you realize that the situation is quite hilarious! You take me back to a lot of that… I actually miss some of the times we had while I was waiting. There is a lot more I really don’t miss – but there always seems to shiny pebbles of goodness in the glass shards we seem to be walking through…

    And I cannot imagine your mouth when you get your new blowers… When I’m rattling on a mile-a-minute now, my wife jokes with others that she thought she got the quiet one in the family – my mom and sisters can talk a blue streak, and I was often rather quiet… She said that now she “realizes that it was just lack of oxygen…” Even in our lung transplant support group – some of the people who knew me pre-transplant comment, “he was so quiet back then…” Whatever.

    You deserve new lungs, Jess. You don’t even understand how much you’re struggling now, and how much you’ve struggled all of your life – you will not appreciate that until you have a crack at breathing freely. And after struggling so many years, you deserve a chance at breathing freely. And if you’re anything like I am – and I think you are – it will blow your fudging mind.

    You “Keep Training Squeegee”!!! I’m proud of you. You make me smile. You take care… Love, Steve

  2. This font makes my exclamation points look like L's - and I tend to use a lot of exclamation points!!! And it makes my elipses look like underscores... And I use a lot of elipses. It drives my wife nutz...

    I like the font -- don't get me wrong!!! I'm not going to change my ways... I'm still going to use elipses... and exclamation points!!! and we will all just deal with my eccentricities. Thank you. Love, Steve

    1. Thanks for the pep talk :)

      There, I changed the font for you!!! See how influential you are??

  3. Holy punctuation Steve, you hit the nail on the thumb Buddy! Jess, listen up, Steve is royally right! BreathinSteven has good stuff to say...listen up people :o)
    It was never nor will it ever be a question of "deserving" to be here. You my Gurl, were chosen. Engage those two brain cells (the ones getting the O2) and think for a minute...Without CF you would not be the incredible person you are, nor would you be on this journey, blogging and touching so many with your funny and ferocious words; meeting the Sandra's, park people and fellow transplant patients of this world and let's face it...WE may not have met and that would be tragic (exclamation point).
    I do understand the conflict when you are such a giver and all of a sudden it's your turn to be given something...your job is to embrace the opportunity; workout like you really want those new blowers; respect your limits and shut up when you're on the bike and treadmill (or it's going to cost you from your own purse, ha, ha) !

    1. It definitely would suck not having met Mr. and Mrs. New Brunswick guy.
      Thanks for listening to me the other day :)

  4. You absolutely deserve new lungs!! Don't ever doubt it.

    1. Thanks Lisa! I do know that, but I have my moments. I just want us all to be fixed...perhaps all at the same time???