Bon Fete a Moi!

Petite bebe moi

Weeeeeeeeee!!!!!!!!!!!!!!!!

Today is my 25th birthday, and while I am both excited and slightly scared at being a quarter century years old, I am embracing it as best as I can!

In my 25 years I have so far accomplished the following:

1) a bone marrow transplant (thanks mum!)

2) so far defeated a rare immune system disease called ADA SCID (apparently lethal if not treated)

3) devoured asthma

4) devleoped and destroyed bronchiectasis and subsequently

5) gotten a double lung transplant

I'm sorry, but who can say they've accomplished all that?

Yeah, you're jealous. Thought so.

Today the realization struck me: that this is my first birthday since I was 17 years old not being sick; not coughing, or battling some infection, or in some form of chronic pain. It is my first birthday since I was 17 where I didn't have to do nebs, or some form of stupid physio (PEP mask, beating).

Last year when I turned 24 I was 16 days post tx; I couldn't turn my torso, couldn't shower alone, I couldn't even open pill bottles. My biggest worry and fright was that I would fuck up my new meds. Remembering what to take, how much to take, what to take what with and what not to take with them, when to take certain ones, how many times a day to take them, was the most daunting task. I was convinced I would never master it and as a result, end up dying as a result of mental fuck ups.

But alas, I prevailed. I am now 1 year, 16 days post tx, and I can clearly and competently self-medicate. I can clearly open my pill bottles. I can turn my torso, shower, dress myself, lol. Today was different: I woke up at 8am, got ready, dressed, and beelined for Timmies, came home, self-medicated, and most importantly my favourite indulgence: played piano.

The weather is slightly cool but humid, and that makes for an interesting feel to The Old Victorian: seeing as it's 110 years old, it's a Woodland instrument and as a result, when it's humid, it sweats. It's not a gross feel, it just feels damp, and it also gives off an old woody smell that I love. So I sat with my tea and played. I played Fur Elise, Good Enough, Breathe No More, Tourniquet...and a ton of other songs. There's something about sitting down at the piano with all the windows open and just feeling free. It's cathartic - a stress reliever, and it's completely relaxing.

In non-related birthday move, I've officially stopped being a complete mental fuck when it comes to the transplant games and have sent out some emails in regards to fundraising and the like. There is another tx recipient in my city and so far, it looks like we will band together and scheme some ideas for Sweden. YAY!

Still waiting to hear back about mentorship from TGH....could be a while I guess. Oh well. I've contacted two people but havent heard back yet. Patience I guess.

In other news, dare I say it? Well, fall is approaching. Here in Ontario - and maybe even the northern half of North America, wishing/being excited for fall is kind've like living on the edge of fear, because you know that by doing so is somewhat like unleashing a beast: fall is exciting, it's a time for harvest, for snuggly clothes, Thanksgiving, fall-y smells, leaves, beautiful colours, rainy days, windy days....but there is a price that proceeds this: winter. By being excited for fall, you are basically being excited for doom because fall unleashes winter eventually. Fall cannot stay around forever, and winter is a bastard that can sometimes sneak in early and stay longer than is strictly necessary. For all I care, winter may as well fuck off and die and never rear its ugly frigid head, but alas it does. Winter my friends, is the Spawn of Fall. I love fall, but I am hesistant to welcome it sometimes.

Um...

Yeah.

Happy birthday to me!!!!!!!!!!

HAPPY 23rd BIRTHDAY TO MEEEEEEE!!!!!!!!!!!

HAPPY BIRTHDAY TO ME!
I AM 23!
I'M COMPLETEL AMAZINGGGGGGG
HAPPY BIRTHDAY TO ME!

AND MANY MOOOORRRRRRRRRRRRRRRRRE!!!!!!!!!

WOO HOO! I'm so excited for my birthday! Even tho this b-day i don't have new lungs yet (as i had hoped) who knows, maybe next year i'll have them!

YAY!

"Take a deep breath....hold it...."

"....breathe normally...."

This is what was said to me today, as I slid into the CT scanner. I was instructed to close my eyes as to not stare into the sketchy laser that lays above you. It was as i laid on my back taking the 'deepest' breath possible, and 'holding' it as best as i could (coz i mean c'mon, when i inhale, my chest doesn't even move...) that I realized that they should really change their criteria when communicating to the patient laying in the scanner. Especially a patient in my situation where breathing normally isn't an option. It struck me then, to change the format to this:

"Take a deep breath in.....hold it.....COUGH."

B/c when you hold your breath for 3 seconds, you can't go back to breathing normally. I found that I coughed - completely disgusting if we're to be honest, and not just once, but I coughed the entire bloody time i was laying down. I made the conscious decision prior to checking in for my appt to not go to the bathroom and clear my chest. No no, I decided like a mature adult that I was going to keep all the phlegm in my lungs and have it make its lovely appearance for the CT scanner so they can see how much these suckers hold. And while this was a brilliant idea on my part (so it felt like...tho I'm sure others have had this idea dawn on them before), it did cause me to cough disgustingly the entire time. It's that wet....sounding cough...like you're choking on water. Literally, when I cough in this way (and i can't describe it...you can only understand it if you experience it), if i go to turn onto my stomach and cough, the stuff will just pour out of me. Not drip like a runny nose...no we're talking all out pour.

Yeah. I don't choose my words lightly: it's pretty disgusting.

So all in all the day was great. Went to rehab, meeting, and met with some friends from rehab. Dave (Scottish Dave; sounds like Shrek) has been listed, so my mum and i sat with him, Lynda, and Carol and we had fun talking about our probs and stuff. I find that the only time i ever let my parents see what i truely experience (esp. emotionally) is when i'm with these people. Today i probably told my mum honestly how i feel every day when i was with 'my people'. I think it shocked her to finally realize how much pain i'm in, and how i'm not entirely ok with my situation...how it does suck to be 22 (23 on Saturday!) and having to deal with this, but whatever....i can't change it right just yet. Hopefully soon!

Back on track with 'disgusting' things, if i'm to be honest, i havent been feeling well in the gut lately. To be frank, i've been dealing with the shits at the most in opportune moments. I dunno if it's something i ate (most likely), and it's made worse by the fact that i need to get my Gamma this friday and am thus, less able to fight infections, but either way it's not pleasant and has left me a little cautious of leaving the house for extended periods of time. I thought i was going to shit myself at katey's party today, and I barely made it home tonight. I got home at midtnight from MY birthday party (wooooooo!) and i didn't even have time to grab the balloons in my back seat. I sped home, undid my seat belt when i was at the top of the street, i didn't heed the stop sign, i sped into the driveway, pushed up the door, turned the car off and flew into the house.

Once inside i couldn't get my shoes off fast enough. My purse was stuck to my arm, my pager was latched to my sleeve and omg i was sure i was going to shit myself. My dad decided to strike a conversation with me in the hallway by asking how my night was, but all i could do was fly past him and yell in passing, "it was great I HAVE TO SHIT."

And that's how i've been.

In sum...it's been pretty disgusting between the copious amounts of muscus and sudden impulse to shit as i'm momentarily stricken with the runs.

As long as we're honest....