The Blog Blog

Spinal Tapopia

2011-02-28T20:31:00.005-05:00

Well, today was the ultra-fun Spinal Tap. It wasn't honestly that badm getting a filling hurt more. The guy said I was really nice and was a giid patient about it, and warned me that a raging headache would soon follow, which it did. Right now my lower back where the wholeis is starting to hurt so i'm off to bed. Plus, just blogging is incredibly difficult since I can barely navagate my comp coz my eyes are fucked.

Looks like I will be incarcerated until Friday. They are taking me to the neuro opthamologus Weds to see if they can see anything wrong there while we await the cultures of my spinal tap.

Yes, this fucking sucks.

So far today I've had 3 Atavans, 2 Tylenol 2 with codeine, and IV gravol since I threw up my smoothie and popcorn breakfast.

I am down to 93lbs.

The fun never ends. I'm off to sleep.

Ragin' Cajun Brain Infection

2011-02-24T15:31:00.002-05:00

There's nothing to do here

But sit and complain

In bed at the hospital

Yup, you got it: I'm in.

It's pretty clear I did have labyrinthitis, but it's since fucked off. What remains is horrid balance (I've fallen a stellar 4 times now), nausea and vomitting, and screwy vision. It wasn't getting any better so at the insistance of my parents I made an emergency doc appt yesterday and he agreed that something is up, so he called TGH, yelled at them for a bit, and they said to come down and that the people in the ER would be waiting for me.

So here I sit up in my room on the 7th, day #1 under my belt, iTunes playing. I've got a double room but no roomie, and I got the window seat so I can gaze out over downtown TO over night. I've had my shower, shaved my legs, moisturized, I've got about 5 blankets on my bed, inclined, with a tea and my TV on. I spent 2 hours throwing up this AM so got an IV dose of Gravol, and holy fuck people, it's instant the effects. You instantly pass out it was fabulous. Although as I felt my body turning into a tree stump I had to wrangle my stomach as it wasn't sure whether or not it wanted to explosive shit or excorcist style puke all over the place. So suffice it to say we made it into the bathroom and dry heaved instead.

Fun times.

I threw up poutine from last night this morning and it was fucking horrible. God it was worse than when I threw up my cyclo Friday night. Both times burned horrendously, like my stomach had a tiny pit of fire in it. But thanks to the IV Gravol that knocked me the hell out (just in time for my dad to visit!), I've been vomit-free for almost 12 hours. Yay!

So besides laying in a hospital bed all day, my dad was visiting (mum was with me yesterday and will come back tomorow). We went on a wheelychair adventure (I actually wrote "adventure" on the "destination" portion of the sign out sheet, much to my dad's impatience) to get BoosterJuice, some soap and a razor for my shower, and a spark-shock at the elevator (my dad laughed hard when it happened to me, but i laughed harder when it happened to him). Also saw lots of neuro fellows and got lots of neuro tests since they think that I've got a virus in my head that's causing the wretched balance, screwy eyes, and nausea. I'm getting an MRI tomorrow to see if they can pick up anything (like fluid from the virus), and if not I'll have the grand fortune of getting a spinal tap.

Un-yay :(

So they think there could be a few things wrong with me:
- a virus in my inner ear which is affecting my balance and eye sight and making me nauseas
- a reaction to my gastro med Maxran
- or both.

So we'll see what it ends up being! I just wanna feel better - it's been over a month and my parents go to Mexico on the 1st soooooooooooo...

Yeah, I gotta get better!

Ps I punched myself in the accessed port in the shower :( Ouch.

Tomato soup

2011-02-16T19:09:00.003-05:00

is the only thing I've kept down all day
soup preceeded by 5 tummy pills
2 maxran
2 domperidone
1 Gravol

it's been 31 minutes and i'm vomit-free
woke up to a tea
Mum to the rescue
kept it down
tried a donute
puke, puke, puke
not even an hour after taking meds
Emergency text to Alex, she let me know i'd be ok

All aft spent nauseas on the couch after feeling well enough to see the Finnesaur
Puked 2 more times in the sink
Filled it with soap as a courtesy to the famjam so my vomit wouldn't stink up the house

Internet says to drink lots of water and consume green leafy things
Hiccup
Dad to the rescue
Ginger Ale, brocolli, cucumber, green grapes
Grapes are the 2nd thing I've kept down since my lovely sweet soup
the taste still lingers on my lips
Bliss

Belly full
TV not swimming in front of my eyes
But still
I just yearn to feel better

A Step in the Right Direction

2011-02-14T10:36:00.002-05:00

Since my last entry things have gotten worse, with the worst two days being this past weekend. Saturday and Sunday I was incredibly dizzy and the only time things weren't moving were when i was laying in bed facing the wall. Needless to say, I hated waking up and thoroughly looked forward to when I could go to sleep and close my eyes and things stopped moving.

Sat and Sun, it didn't matter what position I sat in on the couch, everything was swimming before my eyes. Even my limbs were wiggling away. I couldn't get comfy and couldn't even use my computer.

Then yesterday showed up. Yesterday was my worst day yet. I could barely walk, and by night time I couldn't even stand straight, my body was contorting to the right and squeezing me to the ground. With a panicked call to my coordinator updating her on my state and informing her that I didn't care if they admitted me, at that point I really didn't care what happened to me, so long as it was something to get me better. I went up to bed with the help of my mum at 8pm, took a sleeping pill, and knocked myself out into blissful sleep for 13 hours.

And then today...

Today I woke up and felt a little bit better.

I can stand up straight and not wiggle.

I can walk straighter and in a straighter line and not bump into things and weave in all directions.

I can sit in any position on the couch and nothing moves.

Hopefully I've taken a step in the right direction and am getting better. Maybe I had to get really bad before I could get worse. I hope the worst is over, and I hope this virus is leaving me.

So keep your fingers crossed, knock on wood, and say a prayer my friends that I'm finally getting better!

Happy Valentine's Day:)

Ain't nothin' gonna break my stride...

2011-02-06T14:02:00.005-05:00

ain't nothing gonna hold me doooooooooooown!

oh no!

i've got to keep on mooooooooooooooooooooovin'!

And so it goes...

The Euro Trip is off.

Evlyn has been sick. She lost a good portion of lung function and no matter how hard she tries, she can't seem to to get it back. Being that Contiki tours are basically all walking, it would be very difficult for her to do a trip like this, so it's been cancelled.

I'm not sad, I just want her to get better. Like I said to her, this isn't to say that we can't go at a later date, right? Plus, I'm still going to the Transplant Games in Sweden so i've got that to look forward.

This has not made me sad, in fact, I opened my Contiki book and am spying an 18 day Great Britain and Ireland trip! I'm soooooo excited at the possibilities!!! Soon I will send out a casting call on Facebook to my friends to see who is interested!

I'm proud that I'm not mulling about over a cancelled trip. Now I have a big chunk of money laying about that I can put towards a cheaper trip or something else, like a pup. I know I said I wanted Newfie, and I still do, but I've also been spying French Bulldogs b/c they're so ugly cute. I have a name picked out and it's pretty epic. Only a handful of people know what it is and let me say, it's pretty amazing!

So yeah, onward and upward!

In other news...

It's prob best (for the time being) that the trip is off, as I've had to tell my boss I need another week off. Still horrendously sick, can't really walk, my dad is forbidding me from driving, still dizzy and nauseas. Soon after I wrote my last entry I barfed. I think I barfed again after that. I've officially lost 10lbs now. Havent barfed in a few days tho, so that's good!!!

I've had 2 epic falls in under 24 hours. First came Friday night, when i got out of bed and my legs gave way beneath me before I could even process a thought. Before I knew it I was crashing through medical boxes, past my garbage can, and straight into my closet. Lucky for me I had the fortune of cracking my head off the corner of my open closet door too.

The following morning I woke up, had an amazing stretch, and then fell down the stairs. I don't even know how it happened, all I remember is that I was at the top of the stairs and the next thing I knew I was sliding on my back.

I'm a little sore today.

Friday night I had a shower and sat on the tub floor like a classy broad. I'm sure my mum was wondering what all the banging and squeaking noises were as my wet ass slid across the tub floor from above. The night before I almost fell backwards out of the tub so I figured to be on the safe side, it's probably best that I remain seated until this virus passes.

In other news: we are getting a new puppy. Casey passed away almost 9 months ago, and 2 weeks ago we got a call from our breeder that one of her dogs had had pups and that she had 2 Blue boys. A Blue Sheltie is a grey, white, and black sheltie. The girls we have are Sable (brown, blonde, white with some black, like Lassie), and Casey was a Tri (black, brown and white). We've yet to have a Blue sheltie, so this time we will be getting one.

Last Saturday we went to look at them, and being that they were only a week old, their eyes were still shut and they looked like squirrels. Blue shelties often have blue eyes. Next week my mum is going back to look at them and maybe she'll get a feel for which one she'd like. We've picked a name and settled on Seamus.

I am excited to see which one he will be and show you all pics!

I hope you're well.

Signing out from the Labyrinth,
Bree

Barfing

2011-02-03T10:44:00.005-05:00

Yesterday was my 18 months bronch.

I threw up in the freezing room. The minute I smelled the stuff you gurgle....yup....it all came up. Thanks labyrinthitis.

I got extra knocking-out stuff, and it worked. I felt the last snip and that was it.

I threw up in the recovery room. The minute I got off the bed and onto the floor to put my clothes on my stomach flipped and bleh...up came the freezing i accidentally swallowed. And apple juice.

I woke up today and got dressed, washed my face, came downstair, and bleh, threw up. Throwing up on an empty stomach is NOT fun. I just dry-heaved and brought up bile. I feel like I'm going to be sick again but can't be b/c I took meds an hour ago.

Ugh.

Stupid labyrinthitis and it's dizziness and upset stomachness.

I've had it for a week and a half and have lost 5lbs.

That's it.

And thanks Lene for your sweet comment! I'm glad someone understands! And no, I havent been on genta-anything but I have heard of genta poinsoning. I think what happened with me, I was just lucky enough to contract a rare virus. Yay me.

In the Labyrinth

2011-02-01T15:16:00.002-05:00

Zombie virus be tamed!
Labyrinthitis is thy name!

So yesterday saw the first day of my 18 months post-tx assessment. And oddly enough, my lungs weren't high on the list of 'how are you doing?'

My broken head was.

After much testing, watching me walk, looking in my ears, listening to my symptoms, it was concluded that I am suffering from Labyrinthitis caused by a virus. And for those of us lucky enough to suffer from the rare disorder Labyrinthitis, it can last for weeks and cause balanace disorders, nausea, temporary hearing loss, and all that fun kinda stuff.

So...yay me! At the moment, I feel like my face is being sucked into a vortex. I keep swaying to the left even tho I'm sitting.

It's been fun.

Today it took me an hour and a half to get out of bed, and as a result I took my meds an hour late. I stumbled into the shower and contemplated sitting on the floor for it, but realized that being dizzy and wet and trying to get off the tub floor whilst dizzy and wet is a bad idea, so I was a big girl and stood for it.

What can you do tho, eh? I'm trying hard not to complain but I really hate not feeling like myself. I feel like I'm perma-tipsy and if you were to push me i'd fall flat on my ass.

Um...

In other news, there's a storm of 'historic proportions' gobbling up half of North America, mainly the whole eastern seaboard. It's supposed to start later tonight and last until tomorrow aft. We're supposed to get between 20-30cm, and seeing as I have my bronch tomorrow, dad and I are going down to TO tonight and staying in a hotel so we don't have to drive in it. The worst is to be between 6 and 8am tomorrow which is when we'd be on the road, so to be on the safe side we're going down tonight.

Yay hotels!

Tomorrow's bronch will see me requesting extra knocking-out stuff, seeing as I had the misfortune of being totally awake for my last bronch and thus seeing and watching and feeling the procedure. Something tells me I'm going to be horrendously sick after tomorrow's bronch due to a combo of labyrinthitis and all the fun stuff that comes with the wearing off of anasthetic.

Can I get a collective 'yay'?

My broken head

2011-01-27T17:50:00.004-05:00

For the past 4 days I've been stumbling around like a bee in a bottle, thanks to my broken head. It all started Sunday when the weather changed a drastic 23 degrees in under 24 hours.

Finally today I was fed up and phoned up the docs in a fit of tears and got fitted in for 4pm.

I waited. And waited.

And waited.

I sat amongst the sick, the disgusting, and the grotesque.

I made a point to look as miserable and unapproachable as possible, and it seemed to work since no one made eye contact with me which is just how i like it.

Finally I got in. Where I waited. And waited. And waited.

The doc came in. He was a fill-in doc since my doc is on mat leave.

We went over the meds list, the transplant story, the medical history.

"You scare me," he said.

"Ya," I replied with no feeling. Just fix my broken head.

He listened to my lungs, looked in my nose, mouth, ears. I stood up and did walking tests, and followed his fingers with my eyes.

"Nothing neurologically wrong," he stated.

Ya. My mind replied.

"Well," he said sitting down. "I can't find anything wrong with you. But your medical history concerns me. What do you think it could be?"

"I think it's from the weather change the other day," I said flatly. " I get headaches and sternum pain and now my head is broken. From everything I read on Google, it says barometric pressure change that causes vertigo can last for days"

He said nothing.

*Silence*

"You can always try Gravol."

"Ok."

And the appointment ended.

And my head is still broken.

7 Years

2011-01-27T14:12:00.002-05:00

I keep you locked in my head
Until we meet again
I won't forget you my friend...

~ Pink, "Who Knew"

Topsy Turvey

2011-01-25T15:15:00.003-05:00

The good news is that I no longer feel like a zombie.

The bad news is that for the last 2 days I've been plagued with vertigo, to the point that today I called out of work. I feel all topsy turvey, like when you're tipsy from drinking. I went to shoppers and bumped into a few things, when I stand up i take a few seconds to right myself, and i feel nauseas. I'm eating right now for the first time in 21 hours actually. Right before a dizzy spell I get a hot flash.

It's been fun.

This is the first time I've ever had this happen, and I did some research as to why it's occured. Since yesterday there has been a 23*C change in the weather. It's gone from -25 to -2 in under 24 hours. I always get headaches and sternum pain when the weather changes, so when I was researching 'barometric pressure change symptoms in humans", next to headaches and arthritic pain, vertigo was another one listed. It all made sense.

So that's what I've been up to.

Also, is anyone even reading this blog anymore? No one posts comments...makes me sad :(

Tea = Zombie Fuel

2011-01-17T14:39:00.003-05:00

Today Chronic Illness reared its ugly head and said, "Today is MY day, and there's nothing you can do about it. HA HA" and so I awoke feeling like a total zombie, taking an hour and a half to pull myself out of bed and do human things.

It's days like today that i wish I could reach inside myself, pull out my defective ADA gene, and fix it to make myself feel better.

Sure, you can treat it with my injections, and other meds, and lots of tea, and keeping warm, and having lots of soup and other stuff, but it's no match for It itself. Somedays it flares up, and those days, like today, leave me feeling like a zombie who does not wish to be peeled from the couch.

I managed to get myself my tea, which I have now named Zombie Fuel, and go to work, but luckily, frigid temps were on my side and most of the dogs didn't wish to walk today anyways.

I just feel blah...can't be motivated. Everything feels like a mountain of a task. I did manage to order meds, which I've successfully put off for a good week. I'll pick them up tomorrow. I also wish to make Beer Stew for supper, but alas, the ingredients aren't in the house which means I'd have to go to No Frills to get them...which means moving. So.....yeah.

Maybe tomorrow?

Ugh.

Speaking of chronic illness, we had this discussion last night at supper. My sister seems to beleive that since i had my transplant, that I no longer have a chronic illness. Sometimes I think she gets confused and forgets that my former lung condition is completely separate from my underlying primary condition. My underlying primary condition - ADA SCID - is the reason why my lungs got shitty in the first place. ADA SCID is genetic - I was born with it and it's embedded in my genes. Bronchiectasis was a result of SCID, the repeated and prolonged infections, but isn't embedded in my genes. It just coated and killed my lungs, but wasn't in my genes.

Get it?

So I got a transplant and bronchiectasis (and asthma) fucked off, but the ADA SCID is still there. I used to get IVs for it, but have switched to daily injections. Any condition that needs to be treated long-term is considered chronic. This condition will never go away. If it goes untreated, it is lethal.

Ironically enough, after telling my sister what constituted a chronic illness, the discussion of gene therapy and a cure was discussed. My dad and sister are all pro 'cure' and gene therapy, even though at Sick Kids they told me that I am too old for gene therapy. Which is fine. The injections work great and 95% of the time I feel amazing, it's just the odd day where it decides to flare up and there's not a lot I can do about it but ride it out.

Would I want to be cured if I was able to be? Honestly? No. I've lived with this for 25 years. It's all I know - the ups, the downs, the stagnant-ness of it. I don't know what I would do if one day it were gone. It keeps me humble. I feel amazing 95% of the time, it's just the odd day (like once a month) where it flares up and I feel like a zombie. And I need extra zombie fuel.

That doesn't mean that I don't want a cure or beleive in gene therapy. I absolutely do. But i'm too old for it and the way i get treated is totally fine :) I think if you spoke to a lot of ppl living with chronic illness they would agree. They would feel like how they are getting by is just fine. Chronic illness is a total learning experience, and like i stated before, it keeps you humble.

So I just ride it out, take it easy, and consume more Zombie Fuel.

"DON'T stick things in your ear"

2011-01-10T17:26:00.005-05:00

....said my audiologist to me as he took the ear-looky thing out of my ear hole.

"That's a lot of blood. You should have gone to your family doctor instead of me"

Internally I smiled, knowing full-well that calling my fam doc would've meant a wait, or a referral to the ER, which would entail a 6+ hour wait that I was in no mood to endure.

"I could've," i said, "but you were the first person to come to mind. It's not that my ear was spurting blood profusely everywhere or anything".

"True," he agreed. He stuck a q-tip coated in vaseline in my ear a few times and swabbed away the massive pool of blood.

"Look," he said, showing me the end of a seriously drenched q-tip. "A small clot. It's started to stop." He looked happy. He stuck the ear-looky thing back in my ear. "Aaaaaaand there it is: you punctured a blood vessel."

He looked down at me as I sat in the chair trying not to laugh.

"DON'T.STICK.THINGS.IN.YOUR EAR"

Ok I take the message to heart. It all started a few days ago after I showered, where I was sure I got water in my ear. It's nothing too annoying but if I force my teeth shut there is a 'thunk'ing sound in my head. I told him this but he saw nothing with the magic ear-looky thing. My dad thinks it's probably a snot build up. Today I was stretching when I felt the thing budge. Wicked, finally! I thought happily, as I dug through my purse in search for my thing of Q-tips. Finding them, I whipped one out and put it in my ear, swabbing.

I removed the q-tip and there was blood. I stuck the other end in. Blood. Waited a bit, got a new q-tip, same thing. So i called the only person I could think of and zoomed right over. By that point it literally was bleeding profusely - dripping out my ear and down my neck kind've profuse. But being a hero, my audiologist staunched it and I came home with a lesson I will never forget.

Did you know that the humans first instinct when they see a hole is to stick something in it?

Now you do.

Good for the Soul

2011-01-09T10:02:00.006-05:00

Early morning drives are good for the soul.

I had to go out to Rockwood this morning for 7:30am to see the Babies - two french bulldogs who are almost a year old (but i refuse to beleive they are Big Boys now because I love them so much). I've been taking care of them almost daily, twice a day, since Sept. When my time was up I wasn't quite ready to head home, and still had Timmies left, so I decided to go for a drive. I went out to Eramosa, then Erin, Ospringe, all the side country 'towns' that I know so well from having my nana and papa have a farm out in Erin whilst growing up.

The sun was blazing away in it's usual wintery way. Clad in my blue heart flannel jammie bottoms and brown U of G sweater, I drove down the backroads towards the Farm. It still looks the same, all 181 years of it (that's 1830 people!) I was sad that I couldn't see the tell-tale red humungus barn door that dominates the back of the barn (thanks to the sun), but what can you do? I was happy to see that the new people who live there (nana and papa had to sell it in 2000 because it was just too much for them to take care of) were utilizing it well. At the side of the house where the red deck used to live, now houses a pen for horses. I'm glad the people are using the farm for its intended purpose instead of buying the land and eventually selling it to be used for future subdivisions. To take away memories of 4-wheeling, snowmobiling in -30*C weather, falling through the ice in my snowpants and having them heat above the iron woodstove, ect, would break my heart.

It was nice to drive out there and think, and plan, and get things together that i need to focus on in my head. I came home and emailed my boss about next weekend. I actually have it off (so far) and asked if it could stay this way (last minute dogs ALWAYS pop up and I don't know when the last time I had a full weekend off was). Then I emailed Evlyn about our trip, and emailed my friend (who's also my travel agent) about getting things together and tying loose ends. It felt good.

Now it's the shit I don't want to do: like get doctors notes, sort out meds, airport stuff, blah blah. I'm sure it's not honestly all that bad, and that the thought is actually a lot worse than doing it, but ugh. Then I still have to register for the transplant games....

It'll happen. No fuss. Still plenty of time...

I can't beleive it! I need 2 more paycheques (if that even!) and my trip will be paid for! AHH! This is happening people! Saving up for the games won't be that hard either, but I still have to register with the Canadian Transplant Association.

So yeah, the random drive was good for me. I like to go on them and appreciate the scenery and what not, and revel in the fact that I finally have a future.

Hope you're all well!

New Years Newness

2011-01-01T16:56:00.004-05:00

The Finnesaur

Yours truely and Krystal
"White Chicks and Gang Signs" - a tribute to our university years..

My Scary Spice impression

You never know how hard it is to blow a horn until you're too inebriated to get sound out

So that basically sums up my new years! Of course, it consisted of many other aspects, such as makeup, dancing, warm weather, and vomitting, all in one night. Krystal came to my resuce by pushing stupid drunk bitches out of the way, and baracading herself in the toilet stall with me as I suffered the wratch of cranberry vodka, mango and vodka, hypnotiq, and too many feta and spinach samosas.

I realized last night, as I ran up the wooden steps to feed and pee Blue (the Australian sheppard I am caring for at the moment), that this is my first time EVER being all dressed up, and going to the bar, AND BEING ABLE TO BREATHE. I almost started crying. Krystal and I walked downtown from her place and I wasn't out of breath, nor was I out of breath as we took the stairs, and flew all around the place, and raced back home. I never thought of it. I wasn't coughing, or dying from the humidity (yea it was humid and about 10*C). I was out there and I was having fun. And it was a blast :)

My 2nd letter arrived on Dec 24th. I learned that my donor and I are very much the same person: we have a passion for adventure, for wandering aimlessly and walking for hours, nature, being on the go, cooking and baking.

But there is one thing that stood out in the letter and blew my mind.

His university major/degree.

It's the same as mine: Anthropology.

Who else has a degree in Anthro? Not many people. The world works in mysterious ways. Maybe this was meant to be...

So 2011 is here! This year I will:

- get my degree in Anthro!

- go to Europe

- compete in the Tx Games in Sweden

- Meet Evlyn AND Alice

- My sis will get married

- Jenna will get married

- Katey is going to Ireland

- Krystal is going to Japan

- grow up and move on

It's crazy eh? 3 years ago I had just been assessed for my transplant. 3 years ago I was waiting by the phone, hoping to hear that I had been accepted to be listed....3 years.

3 years of craziness.

I'm glad it's over and that I'm on the other side. And i hope and pray that my friends who are waiting don't wait long.

HAPPY 2011 EVERYONE! :)

Nothing else matters

2010-12-21T10:32:00.001-05:00

4 days before my 1 year back in August I received my donor letter.

Now, 4 days before Christmas I sit in the aftermath of learning that a 2nd donor letter has arrived.

Think it can make it before Christmas?

We wait...

Lungs of Awesome

2010-12-20T10:48:00.004-05:00

I have accomplished a lot today.

1) I woke up and got dressed and flew out the door at superhuman amazing speed
2) I got Timmies
3) I sped to Kitchener
4) I did my PFTs
5) I got my port flushed
6) I got more Vivaglobin ordered
7) I fed someone's cats

And here I sit.

I initially thought my PFTs were botched and that I ruined them, seeing as I broke the cardinal rule of consuming a huge drink before hand. I guzzled my XL tea because there's no way I can drive to Kitchener in that kind've traffic without tea in my system and not feel the urge to murder people for driving and/or acting like assholes. But alas, it didn't ruin anything. However, I did make up for it by taking the 4 flights of stairs instead of the elevator so maybe that also helped.

So what were my PFTs you ask? Well, grab your gochies, and your extremeties, and push any and all Old people of out the way: 87%!!!!!!!!

AHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!! 6% higher than last month! WOO HOO! I'm sooooooo thrilled, and it makes it even better because I met with my respirologist last week who told me I was too healthy to be there and to get the hell out of her office and that she didn't want to see my face for another 6 months. So this just makes it better! It actually blows my mind because it's taken me a good 5 months to get my PFTs up since having that small bout of pneumonia. It wasn't even bad but it took 10% off my PFTs and only now am I getting it back. I know I'll get back up to 90 + % but Jesus, I can't imagine what couldn've happened if the pneumonia was any worse!

Blood work on the other hand has been screwy: Cyclo levels too high, so my Cyclo pills have dropped from 175mg 2x a day to 100mg 2x a day, Imurran has dropped from 75mg once a day to 50mg once a day because my RBC are low (79...120 is normal). Yeah, i'm extremely anemic, but when you figure this:

1) I have gastroparesis, and can't digest fats

and

2) Iron pills constipate me beyond all comprehension

it equals

3) Being kind've fucked

And honestly, you can only take laxatives and colonic so much before your body says "Fuck you" and it stops working. I take 4 laxatives a day and that helps, but if i go an introduce iron pills into my diet it messes everything up. I see my immunologist next month so we'll see what concoction he comes up with to fix me. If not, oh well.

What else? I officially have half my trip saved up for! Weeeeeeeeee!!! I still have to book flights and the like but it's under way!!! 5 months now holy-ness! :)

And for now, I think that's it.

Ok, Ok

2010-12-12T15:26:00.005-05:00

I know I've been absent. And I won't lie, I don't have a legit reason. I've had nothing interesting to post about and when I have thought of something worth posting about, I've just been too lazy to do so.

Currently I am stuffing my face with Smarties and looking at pics of a fellow tx'ers tx. He had it not even 2 weeks ago and is already out! Unfortunately for the morbily minded like myself, the pics aren't gorey, but you can't have it all eh?

Sometimes the best pics are the before and after lung shots. The old lungs vs the new. Sometimes it's nice to see really horribly diseased, bloody disfigured lungs, compared to healthy, pink, sturdy lungs. I used to actually think that being sick was all in my head, even near the end when I was coughing shit up that was the colour and consistency of flourescent green Gak. Then I breathed easily with new lungs and realized, "Ok. I wasn't crazy".

Megs had the best tx pics, b/c she had pics of herself cranked right open during surgery, and pics of her old lungs splattered in a dish. Her old lungs actually flaked apart b/c they had to be scraped from her chest cavity. Those kinda pics make you want to grab a snack so you can enjoy the show.

Um....

I had my final exam on Monday. So far, that's all I know.

And that's pretty much it. I've been pretty boring lately, and I apologize.

Whater yer plans fer the summerrr?

2010-11-28T15:09:00.004-05:00

*said in Canadian accent*

EEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!!!!

Here's a direct link to the trip Evlyn and I are embarking on:

http://ca.contiki.com/tours/113-european-escapade/itinerary

AHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!

How exciting!!

If you click on the daily things (like, Depart for London) it will expand into an explanation. It's soooooo exciting! So read it:) AND BE JEALOUS WEEEEEEE!:)

BUT! After that we have a week to do nothing, so we're spending it in London, England. One thing we're going to do is see Stonehenge (I almost gave birth when Evlyn asked me if i wanted to. I said don't ask, just drag me along) and THEN it's the Transplant Games!!

AHHH!!

I had a dream last night that you could see my sternum through my skin, and you could see at the bottom of it my wire. People were touching it and it was a stingy-painful feeling. I realize I dreamt this because I was sleeping on my stomach and my body weight was resting on my chest. I told my dad about my dream, to which he lowered his paper and proclaimed "that's incredibly fucked. you have the weirdest dreams'

Yup.

WOO TOURING! WOO LUNGS! WOO DONOR WHO HAS GIVEN ME THIS OPPORTUNITY! :)

GUESS WHAT?!

2010-11-22T16:50:00.002-05:00

GUESS WHO'S OFFICIALLY BOOKED TO GO ON THE EUROPEAN ESCAPADES CONTIKI TOUR WITH THEIR AUSSIE FRIEND!?

THAT'S RIGHT!

MEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!

AHHHHHHHHHHHHH!!!!!!!!!!!!!

Sadness spares no heart

2010-11-15T15:23:00.003-05:00

I had a busy day today. 10 dogs, the last of which was Weegee.

Weegee is a Westie - or West Highland Terrier. She's spritey and silly and loves to roll in the sunshine. She loves her stuffed squirrel and she loves to sit with me on my lap and cuddle. She loves hugs. She loves everything.

I got into Weegee's place and saw a note. Notes usually greet me with instructions or just general "have a good walk".

But today was different.

Today's note brought me some sad news.

Weegee is going away. One of her owners has become so allergic to her that she has had to move out of the house temporarily due to the development of breathing problems. The note informed me that within the week, Weegee will be gone.

Thursday may or may not be my last visit with her. Today very well could have been it. Needless to say, I left with a heavy heart. And yes, I've cried about 4 times.

It made me realize how we take our pets for granted. Besides the obvious thought of having them die, rarely do we contemplate the fact of being forced to give them up due to means beyond our control. I don't know who I feel sadder for: Weegee's owners, or Weegee herself. She has no idea what is going to happen; one day she will wake up, and be whisked away, never to see her owners again. It breaks my heart.

Needless to say I came home and mauled the girls as much as humanly possible. I went into the dining room and scoured over pictures of Casey. I went to the basement and looked at his urn, his footprint we had made, and his crazy lock of fur that we were fortunate enough to be able to keep.

This of course made me cry more. I love animals almost too much perhaps. I want them to know that if no one else will love them, that I will, no matter how silly, or ugly, or rediculous they are.

So yes, it was with a heavy heart that I said goodbye to Weegee. Again, it's made even sadder because she has no clue what is going to happen. The letter I was left was dripping in sadness; they leaked from the owners words and splashed onto my heart. It made me realize how much I too take my own pets for granted. I'm used to coming home and having 2 dogs and 2 cats. I've never thought that I may be forced to give one of them away. It's not the worst thing in the world but it has definitely dampened my day.

And in other pet-related news, I had to relocate one of our fish, whom I've named Bean due to shape and size. Bean has had a murder-attempt on them and has been attacked by another fish and lost its tail, scales and skin. Bean is now safely ensconsed in a fish bowl that I took from a wedding and is now living on the kitchen counter, away from said evil murderer fish.

**UPDATE**
It is with sadness that I inform you that Bean has succumb to his injuries as a result of Noodle's murderous rampage. He made the journey from bowl to toilet safely. He floated into the toilet hole with grace and is in a place where said murderous demon fish cannot hurt him.

Rest in Peace, Bean 2010-2010.

Early Morning Fog

2010-11-12T08:55:00.003-05:00

It's horrendously foggy this morning. It's so amazing that I can't even begin to describe it. No, the picture above isn't one that I took, but it pretty much shows exactly what I saw this morning as I had the extreme fortune to have an early morning walk in it.

When I was sick, I longed to have a day where I could wake up early in the morning and just go. Just go whether it be mizzly, humid, foggy, cloudless, what have you.

And then lastnight, the most amazing fog descended upon Ontario and decided to stay around for a while. I left my lecture at 10pm and honestly thought there was a fire somewhere and that campus was surrounded by smoke, but in reality, it was a dense fog.

Come 7am, it was still here.

I rolled out of bed and got ready, got my Tim's and headed to Blue's house. Blue is the Aussie Sheppard I am pet sitting for the next while while his 'parents' are away in the UK. Blue is a doll and he squeals like a little girl when he sees me. He has huge innocent amber eyes. I love him as if he were my own.

So i get to Blue's place, we have our morning cuddle, he runs to the backyard and pees, disappearing in the abyss that is the backyard. I feed him breakfast, grab my tea, and we embark for our 30 minute walk into the fog.

How spectacular it was. You couldn't see more than 10 feet in front of you, and here I was, probably one of few people who are actually dazzled by the clouds drifting by me. It was so amazing to just walk effortlessly, taking deep breaths in and out and send my thoughts out. What's even more amazing is that Blue and I were the only 2 in the park (truth be told, even if there were other ppl in the park we wouldn't've seen them anyways)

I didn't want the walk to end. I wanted to stay there forever with Blue beside me, continuing to be amazed by the foggy world around me. Maybe I am simple minded, and a simple creature, but this fog event has completely made my day. I don't want it to disappear. The whole time I was walking I had a piano composite called "Like You" in my head. It completely captures the magical mood of the fog. If you care to listen, go to this link and hear the kind've fantasical world I am living in right now: http://www.youtube.com/watch?v=dN8Np7Il5w0

Dear Fog: Please stay. Don't let the sun burn you away.

Bad Tagged In Photos

2010-11-11T09:23:00.003-05:00

My hairdresser Jen doesn't believe that I ever take bad photos. Truth be told, I've been tagged in some pretty horrendous ones.

Enjoy.

Dracula

2010-11-10T20:13:00.005-05:00

This post has nothing to do with Dracula. I just thought it would add an intreguing touch.

I went back to blonde today. As you can tell. And yeah, that's a mushroom on a fork.

You like? This is thanks to JEN, the awesomest hairdresser to ever exist. Thank you muchly woman! Btw, I got the Lady Gaga Remix CD. LOVE IT.

Awesome-times.

Awestruck

2010-11-06T06:48:00.002-04:00

I went to the bar last night with some friends.

I didn't get home till 2am and woke up for some stupid reason at 5am because I felt compelled to re-read my donor letter.

Why? I don't know. But i'm glad I did, because I made a discovery that has thoroughly woken me up.

I've mentioned that my donor's favourite sport was cross-country skiing, and that I will be taking it up this winter to honour him. But it's more than that: I'm not just doing it as a means to pay hommage to him; I'm doing it because I have this unexplainable desire to do so. I can't explain it, but I have this urge - this hunger - for winter to come so I can strap some skiis on and feel life flowing through me. The other day I was googling Blue Mountain, which is a ski resort here in Ontario. I even was looking up winter backgrounds for my computer that had to do with people skiing because I simply cannot wait for winter to arrive. I've got my snowpants, my jacket, all the good stuff, and now all I have to do is wait.

And then I read this:
"At his memorial one of the eulogists commented that she was sure that somewhere in about November, some person would wake up and have a tremendous urge to hit the ski trails"

You know how you can long for someone? How it pulls at your heart and you sit around and wait for them and can't really think of much else? And then when you do think of them you get excited? That's how I feel about cross-country skiing. Which is strange, because I feel like I've been skiing forever even though I havent. I long to hit the ski trails the way I long for hot summer nights in the middle of January.

Strange eh?

Halloween Times 2010

2010-10-31T15:35:00.004-04:00

From Tylers Place of Awesomeness...

The Finnesaur - he's a Court Joker

Krystal was a tiger and I was a Renaissance Queen

Getting Knighted by DJ the Zombie

Have a good'un, children!

Peasant Food

2010-10-27T15:28:00.004-04:00

I like peasant food.

Simple things, like nuts, cheese and apple, cheese and bread, grapes and cheese...squirrel food essentially. I like creating soups and stews with random things. I like oatmeal. All peasant food.

On tonight's menu is beer stew with french bread. It smells miraculous, and would be even better if it was bitterly cold out, with gusty winds and shit flying by my window, like small animals and scrawny helpless children.

But alas, it's 19, and sunny, and the winds are gusting at roughly 50k (figure it out yourselves, americans)

We were allegedly supposed to get a weather bomb yesterday, which the Weathernetwork once again lied to me about, got my hopes up, and not a shred of destruction to be spotted. I even slept with my blind all the way up in anticipation of being awoken in the wee hours of the morning by a tree snapping in half and breaking through the side of someone's house. But no. Nothing happened.

To be fair, it is windy out, but not the 80-100K they promised/lied about. What can you do? We are owed a storm, since summer offered us nothing.

Um....

I was in the mall yesterday buying a hairpeice for Halloween. I'm being a renaissance queen and the costume is brilliant, albeit 2 sizes too big. It's rented and a size 2, and it hangs off me and makes me look like a house. It has a crown and I've been fiddling around with make up for it. I am tres excited.

While I galavanted around the mall i stopped by North by Northwest and spotted a pair of snowpants. They were $75. Yay for being small and wearing children's wear sometimes. I must get them soon before someone else does and I'm forced to pay regular people prices.

I just remembered that I need to get blood taken for TGH sometime this week. And I could barely get out of bed this morning (distraughtness due to lack of weather bomb notwithstanding) because I felt like a zombie. It was then that I realized I forgot to do my injection yesterday and as a result must do 2 today.

If i remember.

A' Transplant Gathering We Will Go

2010-10-24T14:36:00.003-04:00

Carol hosted a transplant Thanksgiving gathering last night at her swanky place. Most of my pre-tx cronies (who are now post) were there. Remember Deb, Dave, Carol and all them? Well, now you can 'meet' these lovely peeps of mine. I didn't get a shot of Don because he was busy being useful and helping clean up while I was busy snatching pictures with people and standing on couch tops to get them due to shortness. Also, the sassy lady with the bright red hair is Justine Laymond who i've been chatting to on Facebook for years and she is on a trip here in Canada and attended our shindig!

Me and Deb - we go to lunch a lot. She's a rockstar and I love her.

Me and Carol! We got listed 2 days apart and met in the support group room. She got her tx the day Michael Jackson died. We often speculate that she got his, but now that I know how incredibly fucked he was, I hope she got someone elses.

Me and Justine!!!!!!! She says I have a 'strong accent'. I beg to differ.

And of course, Dave *said with Scottish accent* This is Scottish Dave, and he's the absolute best.

Pre-Transplant Gathering, gathering.

Today will consist of me being lazy, being held prisoner by the couch and absolutely forbidden to move. Although, I had to go to the Brit shop to buy tea, which made me go to Pier one to hunt for highly-covetted tea mugs the size of soup bowls, which i found. So i bought 2, and then a 3rd big much because it had lady bugs on it and reminded me of spring time.

What a crippling addiction to have...

GAH!

2010-10-18T21:09:00.003-04:00

AND AH!

I'M SO EXCITED!

Usually I fucking hate winter. From Nov-Feb all you hear is me complain about how much I hate it, and how miserable I am, and when the hell will it warm up, and I want the snow to die, and yada yada yada, but this year my friends, I am excited.

Why you ask? BECAUSE I'M GOING TO TAKE UP CROSS-COUNTRY SKIING. Which means I have to buy snowpants. Which excites me.

Like these ones: http://www.sportchek.ca/product/index.jsp?productId=4292741

Debating between the purple or the yellow.

Also, i will need said snowpants for dog walking, since I won't be doing myself any favours by walking dogs in -10*C weather some days, when I'll just be wanting to be inside because I'm at risk of freezing my legs off.

SO weeeeeeeeeeeeeeeeee!!!!! This also means I'll have to acquire a pair of cross-country skiis. I'll go with used, since I'm not a pro. I'm just excited to be doing something. Frigging god I love being active.

I have a distinctive memory as a kid of looking out our front window in the middle of a snowstorm and seeing people cross-country skiing down the street. The snow was so bright that outside looked pink and everything was glowing. All i remember thinking was how fun it looked and how much I wanted to try. Well, now that I'm well I'm going to do it. I will NOT hate this winter. I will keep active. I will find enjoyment in it the way a true Canadian should!

*beams with unnecessary barf-worthy pride*

Um what the hell else?

OH YES: i've decided on a thing to do for the WTG!!!!!!!!!!!! The 3K walk. Alice will be doing it, so there is no need for me to not out-walk her. And push her off the course and into the Swedish bush.

I think that's it.

The bearer of

2010-10-12T15:14:00.003-04:00

GOOD NEWS!

Grab your cats, and your hats, and your dogs and your frogs, because I just got a call from my coordinator with good news!

............

wait for it

.............

wait for it

.............

wait for it

...............

ok.

THE SPOT ON MY LUNG HAS SHRUNK!

Skip, hop, and knock a small child over. I'm soooooooooooo elated!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

They never really told me what said spot was, but it sounds like it most likely is one of their probable postulations from 2 months ago: just a spot that some people have. From what I gather, it most likely can be compared to a mole. Not necessarily harmful, but should be watched. So I will get another CT at my 18 months assessment.

WOO HOO!

Does this not make you want to punch a kid in the face? YES!!!!!! Jesus and adding a boxing glove to enhance the impact just fills me with incredible, soul-soaring joy.

In other non-kid-punching news, work is busy! Got lots of dogs to walk, lots of personal requests for ME to walk specific dogs, and I'm loving it to bits! Would you beleive that i LIKE waking up at 6:45am as opposed to sleeping in? My day gets started earlier and I get more accomplished. I feel useful. Needed. Worthy. These special creatures love me. It's awesome.

What else? I have a midtern on Thurs. I think I should do ok as I know what to study have hours to do so. So that's good. I just want it done with.

Halloween goodness is coming up. I'm being a Renaissance person. I have a costume and will post epic pics.

I think that's it.

YAY!

Of Medication and Fuck Ups

2010-10-05T09:21:00.004-04:00

Panic! In the pill box!

Saturday morning I forgot to take my meds.

Morning meds are the important meds because they have all of your anti-rejection meds.

And me, having a brain fuck up, forgot to take them.

Every Saturday morning I sit down on my bed (or Friday night if i'm feeling ambitious) and I fill my pill box, and my injection box. I guess I filled my pill box Saturday morning and fucked off afterwards, completely forgetting that pills must be taken.

So it was a shock to me when I went upstairs at 9 this morning to take my meds and saw that Tuesday's box was empty.

I thought maybe I had taken this mornings pills lastnight by accident, but last nights pills were gone.

So where did they fuck off to?

I dunno.

After much internal panic, floor searching, facebook-statusing, it has been mentally concluded that perhaps I didn't miss Saturday mornings pills, but maybe I just took the wrong day instead (ie. took Sunday mornings pills on Saturday morning instead). This would account for today's missing pills, because Saturdays pills are still there, and if I take them today, I will still have 3 days worth of AM pills.

So maybe this fuck up wasn't a fuck up at all. Maybe it was my brain being stupid or something.

I must go bash my head against the wall.

What are you?

2010-09-30T16:09:00.002-04:00

Have you ever wondered what you are?

What your purpose is?

You know you are not insignificant, right? I hope so, because everyone has a purpose on this earth, whether they feel like they do or not. Otherwise, why would we be here?

I was wondering this exact sentiment the other day when I pulled up to one of my dog-clients house. What is my purpose? I asked myself. What AM I?

And it came to me as quickly as a thought: I am a healer. I am meant to be here on this earth to heal people. Whether it be with words, through touch, or food, whether it be people, especially the sick, or animals, I am meant to heal them. I am meant to mother them.

Not in the biologicial sense. I will never have kids of my own, and that's ok, but that doesn't mean that I can't be a mother to other things, like animals, and sick people, who can't get that material healing from their own, or if they need additional love through words and such, I can be the one to give it to them - to help them heal, and deal with whatever ails them.

Does that make sense? Maybe I am psychotic, I don't know. Maybe I think too much. But it makes me feel better to realize what my purpose on this earth is. Especially long term. I can't see myself sitting in an office for 30+ years. I like to move around too much, have small adventures. I like to tell my story and narrarate along the way.

I will not be pointless. I will be significant. I will make an impact.

That's my purpose.

Do you ever wonder...

2010-09-27T09:47:00.003-04:00

...how we keep track of all our meds? I'm trying to explain to my friend Jess how I take my stomach meds and her only response was "Jeeze". It seems like a lot, and I remember when I started my meds immediately after transplant, my fear was that I would never get it right.

So lets take a look:

I take 12 pills for my stomach a day.
2 colace twice a day
2 domperidone four times a day, half an hour before I eat

I take 175mg of Cyclosporin in the AM
and 150mg of Cyclosporin in the PM

I take 75mg of Imurran once a day. That means I take one pill (looks like an 8) and cut the other pill in half.

I take 7 mg of prednisone every other day. On the days in between I take 5. On the days I take 7, I have to cut one of the 5mg pills in half. It's recommended to take pred with milk. But i take everything with tea.

I take 2 magnesium pills twice a day - they should technically be taken in the middle of the day, but i just take them morning and night. They can't be mixed with a lot of stuff.

Calcium. I take 1 calcium pill twice a day, and if you mix it with your iron pills neither one will work. Iron must be taken separate.

Iron. I can only take it every few days because it constipates me badly. Iron can't be taken with anything acidic, and you can't take it if you're on anything for hearburn. It can't be taken with milk or calcium or food because it will lessen the effects of it. However, if you take it on an empty stomach, it constipates you. So either way, it's lose all around.

Then there's my injections. I need at least 5 a week. I can do them whenever I want, wherever I want, however I want. There aren't a lot of rules for it, thankfully.

Then there's the heartburn pill, that i take for the heartburn I don't have. It's to prevent 'silent' heartburn, which can be caused due to my transplant when my stomach got so carelessly knocked around for 'being in the way'.

I take Septra Mon, Weds, Friday at night. There's nothing fancy about it, but if memory serves me, it's supposed to be taken with a 'full glass of water' and not with milk.

Another nightly med is vitamin D. Nothing fancy about it either.

Then there are the monthly bloods that need to be done now, which I do on the same day as my monthly PFTs and port flush. I am trying to also figure out ordering my Vivaglobin to be picked up on the same day so that I don't need to take an extra trip over to Kitchener, but that bright idea failed me because I'm going tomorrow and won't run out of stuff till next week. Oh well.

Then there's the fun aspect of re-ordering prescriptions and med products, which I won't get into because it's frustrating and upsetting and makes me want to jump through the wall. I will have the pleasure of ordering meds, vivaglobin, and needles, syringes, gauze, alcohol swabs and all that fun stuff later on today or tomorrow. We'll see how scary it ends up being. thanks to my discovery of a hidden stash in my closet, i won't need as many. Hurray!

So, have I confused you yet?!

Not Invinsible

2010-09-24T14:58:00.003-04:00

By now I'm used to feeling so good that I generally beleive that I can do and concquer anything. I beleive that I can function on just 7 hours of sleep and go, go, go from the moment I wake up till the moment I lay down.

Well fuck. Today I can't.

Today it hit me like a brick wall, and as a result I feel like goo. I have 0 energy, and it doesn't matter how many energy things I consume, they don't help. I have used up all my Spoons today (google "The Spoon Theory" if you don't know what I'm talking about), and thank goodness my next dog to walk isn't until 8:30pm.

I missed my injection yesterday so as a result i will have to do 2 today. i did one around 10ish and will do the next whenever i stop being so damn lazy. i wonder if that has anything to do with it? who knows.

Thankfully all the dogs I've had to walk today havent been for long. Lemiux was 30 minutes, then Weegee was 30 minutes, although we spent 15 of it laying in a field in the sunshine as she rolled in the fall leaves and I rubbed her belly until she fell asleep (my jobs so tough sometimes); then Sadie who was 15 minutes, who gave me a mouthful when I showed up. I felt so useless that I got a big coke from McDonalds and it didn't help. So i came home and did what any sorry, useless ass would do: eat. And not what I should eat. I ate chips and dip, which will only succeed in making me feel worse.

I think tomorrow I will begin a system cleanse. Just have soup broth and tea and see if that helps. In all honesty I've been eating more chips than i should lately (and cookies) and I wouldn't be suprised if that's another cause for my system feeling like it's going into utter failure.

As shitty as I feel though, it's a nice reminder that i'm not invinsible. It reminds me to slow down, and eat properly, and get rest so I can function.

Until then, I will continue to eat crappily for the rest of the day, and hopefully get some school work done. Tomorrow, let the cleanse begin!

Adventures in Vivaglobin

2010-09-22T19:12:00.004-04:00

Let the fun begin...!

Mmmm

2010-09-22T14:39:00.002-04:00

It's really rediculous how great a fabulous cup of tea can make you feel. Shitty tea makes me want to knock children over; fabulous tea makes me want to sing songs and jump in puddles and hold ppl's hands and sing kumbya.

But i won't.

Instead, I will remain ass firmly planted on the couch, watching Build a New Life in the Country on BBC Canada. Drinking my tea on this perfect fall day: wet, mizzley, humid day.

I've walked 4 dogs today, and see the 2 baby French bulldogs at 8:30. So far, totally loving the job and i have a feeling i will continue to do so. I love waking up early and seeing all the little creatures, because unlike humans, dogs aren't bastards in the morning. They are smiley and excitable and overall just love to see you. And i love seeing them.

Yesterday I bought a Northface tri-climate jacket. That means it's good for lots of weather, namely rain, downpours, and winter. I didn't want to cut corners on a jacket since I will be out in all types of weather, but that doesn't mean that i didn't silently give spontaneous birth when i saw the price of $305. Now all I need will be snow pants to stay warm in when the weather turns to utter crap and i'll be good! Weeeeeeeee!!!!!

On the health front, things are good. Sadly, the infusion stuff is getting low and i'll have to order stuff in soon. Ugh. i hate ordering stuff, because i hate talking on the phone. but what can you do, eh? I promise i will post pics soon of the stuff. I'm just lazy.

I think that's it for now.

SURPISE!!!!!!!!!!!!!

2010-09-17T23:10:00.003-04:00

Guess who found a hidden stash of old (sealed but crumpled) packages of srynges and needle sharps buried beneath the medical rubble of their closest?

ME!!!!!!!!!!

And why am I so excited about this? BECAUSE IT MEANS I CAN DELAY THE SCARY PROCESS OF ORDERING MORE MEDICAL SUPPLIES EVEN LONGER!

DOUBLE YAY!

A Series of Unfortunate Events

2010-09-15T19:19:00.006-04:00

Not suprisingly, the most upsetting part of my day had to do with the fact that Walmart suffered from the complete inability to supply me with my favourite type of chip. Actually, two places are at fault: The Wandering Scot, for telling me that Walmart carried a full bag of cheese and onion chips, and Walmart, for just existing.

I drove all the way from the south end (where I live) to the north-west end to Walmart-ville in search of my muchly wanted cheese and onion chips. Being that it's Wednesday and thus finale night (Americas Got Talent (funny, seeing as NONE of the judges are American), and Big Brother), chips were in high demand. So i get to Walmart, find a spot, stomp into the place, ignore the greeter, and immediately send my sister the following text:

"I'm in Walmart. Where the fuck is the chip aisle?"

Seeing as I never venture into this place, the last time i was there the grocery section was in the middle. Well i searched, and it apparently had been uprooted and moved. To the other side of the store. So i get there, and examine the massive display of chips at my disposal, and not a cheese and onion chip to be found.

Not a one.

I spent 45 minutes searching.

So i figured why not try Zehrs. Nope, they didn't have them. So i decided on plain baked chips and my favourite type of dip: Gay Lea French Onion.

Well you'd think i'd be able to find the fucking thing.

NOOOOOOOOOOO.

ABSOLUTELY NOT A FRENCH ONION DIP TO BE FOUND.

But i stood there. And i paced back and forth. And i huffed and I puffed and I knocked over every one in their food-stained favourite t-shirt and their children. And damned if i'd drive to MY end of the city, to MY Zehrs, where i KNOW they have this dip! Because that would defeat the whole purpose of driving over here in the first place. *scowl*

But it payed off. Because i found it, and stomped angrily out of the store. And now i'm home, and it's 7:33pm and i have to wait exactly 27 minutes until 8pm rolls around so i can stuff my face to the beat of reality TV.

Ok, that's done.

Injection learning day went well! My nurse was awesome and i'll start the injections tomorrow, b/c i need 5 a week, and got 3 on Monday. It's not hard at all. The hardest part is ordering supplies which I will save until the last minute when I run out of things, and will most likely run out of needles and thus miss a whole week of injections. Typical, but w/e. I'll get pics and post them.

My stomach was sore the next day, and thanks to a royal canine punch in the gut from a dog who's kind've an asshole, all is well now. It was a feeling that felt A LOT like how i felt in the weeks post-tx. Honestly, it feels like i did 1000 crunches and had the post-work out soreness, but nope, i just happened to be the fortunate recipient of multiple injections in under 4 hours. Woo. Go me.

I think that's it. Face-stuffing to commense in 20 minutes.

And to JEN - my mum's hair dresser and avid reader of this blog - you rock! Thanks for being such a fan! :)

Night kittens.

Look...!

2010-09-11T16:17:00.004-04:00

...at this creature

I want it.

I must have it.

How can you resist that face? I want to squish it, and squeeze it, and love it forever.

In case you're wondering, that's a Newfoundland Retriever, and I've been thinking about getting one for a while. Of course, I have to save up for it, but I'm willing to do that. Hell, I'm saving up for my trip so why not save up for my own dog as well, right? So weeeeee!!!!!!!!

I had a meeting with a bone doctor the other day. Things are fine and i'm on the proper meds for it, and I inquired about my sternum pain and she said it's to be expected. She called it "rheumatism" *aka, layman's term* for arthritis. She was a nice doc and tested everything else and said that i was essentially fine.

What else? Life has been normal. Waking up at 6:30am almost every day to walk dogs. I love it. It's great.

And that's about it.

WOOOOOOOOOO!

2010-09-10T10:06:00.003-04:00

Thanks Merv!!!!!!!!!!!!! I can't thank you for all you've done for me!! You truely are a wonderful friend:)

Go here:

http://www.mervsheppard.blogspot.com/

And then freak out!:)

(if the link doesn't work, go to my tx links bar and it's called "Merv's Blog" (who knew)?

How cool is this!?!

2010-09-07T18:58:00.003-04:00

My phone has been ringing every hour on the hour since 3:24pm. I couldn't answer the first time b/c I was driving (it's illegal to be on the phone and drive in Ontario) the rest of the times I just havent been around my phone when it's gone off, but have seen some annoying person calling me with no traceable number.

Finally, it hit me: my coordinator! If they call you and you don't answer, it is programmed to call you every hour on the hour until you listen to the message. So finally, at 6 something, I called the number and low and behond, a message was waiting.

So i start listening and my co-ordinator says, " I heard actually through the people at Trillium..." to which I rolled my eyes and thought, "Fuck. What've they heard now?!"

But it was good! Good, good GOOD i tells ya! More than good! MIRACULOUS!!!! Ok *sits down* The people at Trillium Gift of Life were so moved by my letter to my donor family that they were calling to ask if they could use it for medical students while they train - learning about organ donation. They wanted to know if they could use excerpts of it for the students to read so they could get a better understanding of just how impacting organ donation is. She said that they found it exceptionally well written, moving, and heartfelt. She hoped that it wouldn't damage the relationship I have begun to build with my donor family. I called back ASAP and said to go right on ahead, that they have my permission to use whatever they would life - half of it, some of it, all of it.

AHHHHHHHHHHHHHHHHH!!!!!!!!!!!! Then i made my mum listen to it. And then my dad. And then I will listen to it again and make myself realize that i am AWESOME and this is EXACTLY what i want to be doing with me life!

AHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!

Ok, screaming aside, things are grand! Dog walking is busy busy busy, and I am gone from 8:30-3pm pretty much, zooming all over the place and walking dogs. Life really couldn't be more awesome right now. No stupid people to deal with, no stupid stuff, no stupid anything. Just doing a job where i can do what i want, wear sweatpants if i want, a dress if i want, sandles if i want, shoes if i want, eat when i want, listen to music if i want, be silent if i want, avoid contact with people if i want, squeeze animals all i want, kick children in the park and run if i want, knock children over it i want.

It's beautiful. *squeak out tear at happy thought of knocking children over, whilst in sweatpants, with iPod in*

It's been a wicked day! WEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!

It's so awesome to finally have a job that i don't flat out hate, that i feel inadequate at and where people are judging me. Animals don't judge, they just want love my friends. And that's what i've got : love love love!

"We're on shit that could kill a horse"

2010-09-03T23:34:00.007-04:00

Upon investigation of possible side effects of antirejection meds, Cassie and I accumulated this list:

Cellcept:

- rare untreatable brain disease
- can give you HIV
- lukemia
- lymphoma
- uable to control muscles

Prograf:
- can make you go into a coma
- seizures
- decreased pee
- weight gain
- back pain
- rash
- itchy
- hearburn
- vomitting

Cyclosporin:

- facial swelling
- hair growth
- high blood pressure
- kidney and liver probs
- headaches
- high cholesterol
- loss of appetite
- vomitting
- acne or oily skin
- the shakes
- joint pains and cramps
- weakness and anxiety
- tingling in face and extremities
- night sweats
- hearing loss

Prednisone:

- vision problems
- eye pain, redness or tearing
- sore throat
- fever, chills, cough, or other signs of infection
- seizures
- depression
- confusion
- muscle twitching or tightening
- shaking of the hands that you cannot control
- numbness, burning, or tingling in the face, arms, legs, feet, or hands
- upset stomach
- vomiting
- lightheadedness
- irregular heartbeat

...and the very best, lets all yell it out together!:

LOSS OF CONTACT WITH REALITY

Fucken eh! That's all I have to say about that! So my tx friends, when you're feeling down and out, or ready to smack a bitch, or get on board your spaceship, take a peek at this special little list and find some comfort in the fact that it's not really you that's making you feel so effed, it's your medication yo.

Upon other things, things are grand! My new job is amazing - seriously busy, with a confusing schedule, and lots of zooming around and the like, but i love it. Thanks to my affinity for hating people (ok that's a lie: they're assholes), dog walking is pretty rad. The time is good too, which is fab! Some early mornings which I don't mind, some live out of the city, some need to be seen 2 to 3 times a day, most of them walked for 30 minutes, some are only walked certain days of the week, all must be seen at or around the same time each day, it's good. And i have to squeeze in appts in the mean time. And squeeze in seeing Finn.

And learn to give myself injections. And keep a stupid log *shakes fist in anger*

But other than that, i wouldn't have it any other way! Oh, and school starts next week, and I'm going to be joining a walking group with a fellow tx friend.

Weeeeeeeee!!!!!!

Ok, off to fill my pill box.

Does this make you happy?

2010-08-30T20:28:00.005-04:00

Below is the list of shit I will need in order to do these injections. Injections which are allegedly made to make my life easier. I will copy and paste the 2 attachments I got. Lemme know what you think.

ORDERING SUPPLIES

As soon as possible after your first visit, phone Medicalmart at 905 624 2011. You will need to set up an account. These items will be delivered to your house. If you spend $100 delivery is free.
You can also order similar supplies via websites or drug stores. Prices may vary.

The cost will be approximately $1.75 per injection. If you have private health insurance you need to know that some subjects have been successful in having the cost of their supplies reimbursed. It depends on the individual’s policy.

SUPPLIES NEEDED FOR INFUSIONS

• Cat # 113 MM 05507 box 200 alcohol pads. Or you can buy cotton balls and rubbing alcohol at any drug store.
• Cat # 308309661 box of 40, 20cc luer lock syringes (optional)
• Cat #308309604 box 100, 10cc syringes
• Cat # 280SVS 25 BL surflo winged infusion kits (25 gauge) 12 inch tubing
• Cat # 308 305195 box of 100 18G x 1” needles

Walmart will supply sharps containers free of charge. Pharma Plus and Shoppers Drug Mart may also (depending on the store’s individual policies)

Hand washing and clean technique will be essential. You may prefer to use PURELL hand sanitizer rather than do prolonged hand washing.

Insulated lunch bag to travel with vivoglobin.

And:

SUBCUTANEOUS VIVOGLOBIN TRAINING PROGRAM

WHAT YOU NEED TO KNOW.

Address:

650 Sammon Ave
K Wing, Suite 404,
Toronto, M4C 5M5
416-465-7999

Schedule

You will start the week after your last intravenous infusion of gamma globulin. Ideally this first day of training will be a full day. Three infusions will be given subcutaneously (under the skin) on this day. The first will be given by the RN, (myself), the second will be given by both the RN and you, and the third will be given by yourself.

If you feel comfortable and confident with your ability to self-administer your injections, the visit schedule will be as follows:

1 month
3 months
6 months
1 year.

At each of these visits you will be given a requisition for blood work and a prescription to pick up Vivoglobin for your home infusions. This will be picked up either from St Michaels Hospital or the hospital closest to where you live after your second visit. Details of the pick up will be discussed further at your visit.

At each visit you will bring the vivoglobin for that day’s injection and your infusion log book which you will be given on your first visit.

At all times you will have a 24 hour contact number and as many visits as needed to be able to do the procedure safely yourself.

Costs and Ordering Instructions.

You will be given enough supplies for ONE MONTH.

Supplies can be ordered from Medical Mart. Details on how to order will be given at your first visit. The cost will be approximately $50 per month.

FIRST VISIT

Many people feel better if they bring along a spouse/friend to the training visit. There will be a lot to learn and four ears are better than 2!

As you will be taking a lot of things home, please bring a bag to carry these things home. (About the size of a carry on bag) If the weather is hot, please bring some gel packs.

You will be given a consent form to fill out. This is like a letter of information or a contract. We would like you to try the subcutaneous infusions for a t least 6 months. It takes about this long to become completely comfortable with the process.

You will be given a lot of teaching and an information binder to take home. You will have to fill out an infusion log each time you give yourself an injection. It is easy and you will be shown how to do it.

Are we having fun yet??

WHAT HAVE I GOTTEN MYSELF INTO?!?! *sigh*

I am just so fucking frustrated. This was supposed to make my life easier, not make it more insane. The injections were supposed to obliterate the need for montly IVs and time away from work but instead it obliterates nothing and takes me away from work!!!! *bashes head against wall*

I would like to fall into a well. I would like to fall into a well and drown and make this all go away. But now i feel like i have once again fucked up royally.

And it's a 6 month commitment nonetheless!!!!!!!!!!!!!

Congrats, we've officially stopped sucking

2010-08-28T12:04:00.003-04:00

I'm starting to get excited about school and things in general. I have 1 course left and then I can graduate. 1 course left, and it's a first year. I checked the university bookstore site today and the book is $150. Oh uni, you never fail to rip students off. And luckily for me, it's just one textbook, and none of the additional shit like when they throw a bunch of papers together, bind it, call it a textbook companion, and charge you $100 for something you can get off the internet or smuggle from the library.

I am happy to be going back and partaking in university like a normal, healthy person. Because my 1st-3rd years all I did was go to class (when i felt well enough) and come straight home. I am excited to go to campus and be a part of it all once more.

And also: I GOT A JOB. And not a conventional one. Get this: i got a job DOG WALKING full time. Yeah, I know. How cool is that. And i can wear whatever I want to do it, and go to my night class Thurs night, and hopefully *fingers crossed* fit in my Trillium/RecycleMe volunteer stuff when they need me. I am worried this won't sit well with the new boss, but hopefully it's not a huge issue.

So yea, things are normal now. How weird is that? And i'm excited for everything. And I'm getting hair coloured again today. While i looooooooooove my red hair, i think i'm going to go more towards my natural, light red, since my roots are growing in and they look gross. We'll see what I come up with!

So yup, i'm a normal person now, and I don't feel quite so lame as I did before. Like i said to my friend Robert yesterday, "Congrats to us, we've officially stopped sucking. It only took us all summer."

More medical crap

2010-08-25T11:27:00.005-04:00

Why is it that the most stressful part of medical appointments isn't the appointment itself, it's how you'll get there?

I havent really mentioned this aspect of myself before, so I will elaborate now.

I get IVs every 4 weeks - everyone knows that - because I was born with no immune system (ADA SCID it's called). I have been getting these IVs since I was 5 years old. How it works (more or less) is basically this way: you donate blood, and they put it in the bloody spinny thing that separates plasma and crap from other crap and single out the crap that I need - the immune system crap, the T and B cells. I get the the immune system T and B crap. And no, it doesn't look like blood, it's clear, and I do find a grotesque sense of joy as I watch it infuse into me. And yes I can feel it, because it's cold.

Anyways...

Finally, after the last 20 years of IVs, shitty veins, and finally a port, they've invented a new way of getting the stuff (IVIG): instead of IVs every month, they have managed to make it available in self injection form. HURRAY. This stuff is called vivaglobin and you can learn about it (and watch an incredibly long video) here: http://www.vivaglobin.com/

So my immunologist has been suggesting that I try this little ditty out for the last year, but since I was fresh out of transplant last year, it kind've wasn't the right time to introduce something else into my system just yet, seeing as I was still mastering my new meds and the like. Well now, a year out, i felt it was ok to venture into a new world and will be giving it a go.

So i got a call from a chick named Loris this morning, informing me of my training session on Monday Sept 13th at 9am. A 4 hour one. And i need to go to my local hosp and or blood bank the day before and bring with me 3 vials of vivaglobin. How big they'll be I don't know, but luckily for me I have a knack for massive purses so i'm sure my trusty red purse will be sufficient enough to cart around these gems. But here's the kicker: how the fuck do i get there? This appointment isn't at TGH or Sick Kids, or Princess Margaret, which are all across the street from one another, and a block away from the bus station. It's not at Toronto Western which is across the city but accessible through the TGH (free!)shuttle bus system. It's at Toronto East, a land I have never been to. I've googled, and can get there by street car, which I've never taken, or Subway, which my friend tells me "if u get on the yellow line up to bloor younge station, then go east on the green line to coxwell station then ur just a couple blocks down from the hospital" because that doesn't thoroughly confuse me enough.

Did i mention that this appointment is at 9am?! and i'd have to fuck around on the subway system pretty much an hour before that? This means I'd have to catch the 6:30am bus to get into TO at 8am.

Or, I could take a cab, if i wanted to pay $50.

Or I could drive, and risk getting lost, getting off on the wrong exit, getting stuck in traffic, screaming, crying, and being scared because I've only ever driven to TO ONCE in my life b/c i depend on the bus.

I'm sure by Sept 13th i'll have this sorted out. But for now: seriously?!

Bon Fete a Moi!

2010-08-23T10:00:00.003-04:00

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!!!!!!!!!!

The Great Escape

2010-08-21T12:30:00.004-04:00

One year ago today I escaped from the hospital, aptly scaring the shit out of my parents upon the revelation that they would be re-admitting me to their homestead 2 short weeks after having a transplant. I could not walk but 3 feet, and was essentially like a helpless baby, but release me the hospital did, to wreck havoc and carnage to the world at large.

The above pic was taken exactly a year ago, and you can see the bags of meds and other medical paraphenalia flanking me and my wonderful wheely-chair.

I remember my last day in the hosp. There was a tornado outbreak in Ontario and it was my first day outside. It felt like 40*C and i had on sweatpants and a sweater, and was sitting like an old person in my wheelchair with an IV bag on the back of it, as the sky turned olive green and lightning streaked the sky. I didn't really care that i was a quisessential lightning rod, i was just happy to be outside in my favourite type of weather.

Weeeeeee!!!!!!!

Oh lungs, but I do love you....

2010-08-20T14:27:00.009-04:00

This thought entered my mind as I wandered the downtown streets of TO yesterday like a vegabond, as i completed my final day of annual testing. It was the 4 hour long radioactive egg eating day and I was making my way to the muchly-anticipated Campbell House on University Ave.

There i was, in my ripped jean shorts, old sandals that my mum hates, red purse (which happily broke on me on monday), purple light knit sweater and grey-blue hat. I had not a care in the world; i had nowhere to be and no one who needed me. I could breathe. I could walk. The sun was shining and that it all that mattered in that moment.

A whole year.

I frigging made it.

Monday the 16th saw me rising at 5am to catch the 5:55am bus to TO to begin my annual appts. I've gotten most of my results back and they are as follows:

blood work: normal. And i mean normal as in it doesn't look like i'm on any medication kinda normal. Kidneys are great, liver is great, everything else is great. Life is just fucking great.

bone density was a tad down, as to be expected from the pred, so my doc is gonna book me with a rheumatologist or something to see if there's anything i need to go on. she's not worried, and i'm not either, but seeing as i'm active my bones need to be good!

x-ray was nice and clear. and i saw it myself. it was amazing and a sight i thought i'd never see!

finally pfts: Hear ye, hear ye, pneumonia can lick my ass because my pfts came in at a whopping 92%. weeeeeeeeeeeee!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! i was sooooooooo happy to see that, seeing as Monday got off to a rough start...

Somewhere in between my x-ray and blood work i lost my assessment package. Anyone who's had a tx most likely receives a detailed, multiple-paged package in the mail indicating which days you are needed at the hosp, what test you have, what time, what day, and where it is. It tells you if you need to starve, forfeit meds for the test, show up early, apparate out of nowhere, fly in on a broom, or bring a change of clothes. So as you can see, not losing the assessment package is imperative.

And I lost it on the first day.

And i don't know how.

So after scouring the places i had visited in the hosp for my assessment package (and PFT results), i finally gave up, and went for my 6 minute walk.

And that's when my purse broke.

Not one, but both zippers fell off. And i didn't know how to put them back on. So i struggled, gave up, did my walk test, located a wrap to eat, and found a spot on the grass to eat it and attempt to fix my purse.

After an hours worth of struggles and strange looks, i successfully managed to fix 1 zipper, which was enough to keep my purse closed. It was then time to head inside for clinic. So i gathered my shit and stood up and made my way indoors...

When...

I noticed my ass was soaking wet. Somehow i never noticed the ground i was sitting on was soaking wet, until i stood up, so i walked up with a soaked ass all afternoon.

So clinic was clinic - i waited 2 hours. Xray looked good, ct was good, though there is a small spot that they saw and biospsied the following day. No worries though. I mentioned wanting to be a mentor to tx ppl so my coordinator gave me names of who to contact, and I also told her about the tx games and the tour with eve. she looked at me and told me that contiki tours are notorious for being 'booze cruise' types, and i assured her that i wasn't inclined by nature to drink so she had nothing to worry about.

I ended up spending the night at the Delta with my mum and sister since I had a bronch the next day and needed to be there at 7:45am. So we had a girls night and day.

Tues bronch was horrible. I was awake for the whole thing and felt everything, but I couldn't help but be in awe as i watched the live version of the xray, as the little scope snaked its way through my airways and snagged peices of lung. What was even cooler was that I could see where I was wired together, and my speculations seemed to be correct in that I am only wired together on one side, the left, and screwed on the right. It was pretty wicked to see, and I wish i hadn't been so out of it that I could've lingered in the moment a little longer and had a better picture commited to memory than I do, but oh well. It sounds romantic and in all honesty it's painful as hell and had me thrashing and flailing all over the table in my semi-stoned state of mind. BUT! As a result of the bronch, i had a gross/cool thing happen last night! After walking the dog i coughed up a huuuuuuuuge glob of semi clotted blood. And we're talking massive. If it wasn't for the fact that its texture was horrid, i would've taken some time to inspect the little gem, but instead had to cough it up and out. I would've loved to see it though. And yea, I'm gross, but i know a few people (AMY (glare) who would appreciate this peice of spectacular info.

Afterwards I made sure that things looked good from the docs perspective. He said the little spot wasn't an infection as there was no mucus, most likely wasn't a tumor since everything is normal, and could either be fungas (boo, but better than a tumor), or just a naturally occuring spot, to which i've deduced to be somewhat like a mole. It's there, and generally harmless, but should have an eye kept on it.

So that was the bronch. I wandered around downtown with my mum and sis afterward, slurring my speech and purpetually stoned out of my mind, trying not to vomit all over everything. I did however, see Hattie Monday and Tues and she looks fab! A few small bumps but those are to be expected!

So yea, now I'm here, with my tea, my Vanity Fair and Marie Claire magazine, with the windows open and chillen out.

And I am breathing.

Oh lungs, but i do love you...

P.S. You'll notice that i changed the pics. Or maybe you didn't. Well now you do, so fucking look at them. If you look under the 'about the blog blog' section you will notice that I aptly changed the pictures of my precious cats, to include myself in them. You will also notice that yes, in the picture of me and zoey, her mouth is open, and no, that is not her attempt at smiling but rather, she is screaming.

The first pic is my chocolate nephew, Finnegan, aka Finn, or the Finnesaur, or Finnesaurus Wrecks. Look at his beady little, glowing eyes. Full of evil, just waiting to knock shit over and bark at you for no reason other than the fact that you're looking at him and refusing to play with him. Ah bless.

Enjoy.

P.P.S *for anyone who cares*, Titanic is falling apart:http://news.nationalgeographic.com/news/2010/08/100818-titanic-3-d-expedition-shipwreck-science-collapsing/
Anyone who knows me knows i love Titanic, and all things Titanic-y. This makes me sad :(

Coulda been a doctor - or something

2010-08-12T10:28:00.004-04:00

Today has been busy, and it's only 10:28 in the morning.

Everything I had to get done, I did in under an hour.

I woke up and dashed into the blood lab, with my 1 year req in hand. Being that it was 9 am I brought a book just incase the place was backed up with old people. Luckily for me, there was no an old person to be seen, and I was the only one in there. I was told to go into room 1 immediately where I sat and waited while they looked over my req.

"Are you fasting?" they shouted.
"Yes - I always do when I get blood taken" i responded.
"When did you take your meds last?"
"9 last night"

So it always goes...

Soon enough a new blood-taker lady came in who was nice enough, but she kind've lost me when she looked over my req - right in front of my face - and inquired, "Are you used to having blood taken?"

Um......

What?

For real?

No, I'm not used to having blood taken. In the event of dying and subsequently needing a transplant, they never take blood. They save that for later when you're all well and better...In fact, I've never so much as seen a needle and have no idea what you're talking about. And please, blood-taker lady, stop staring at my port, for it is merely there for decoration and nothing else. And no, I don't have a scar from my transplant, but I do have a line that looks like a scar that I drew on myself one night out of sheer boredom.

Pft. Some people.

This kind've took me back to the time I had a bronch and the nurse forgot to put heparin in the line before she removed the needle, after I told her twice to do it. I should just leave this shit up to myself since you can't rely on anyone else to remember.

And speaking of not being able to rely on anyone...

I was at the pharmacy today picking up meds and inquiring about the Trillium Drug Plan (since I'll be 25 in two weeks and thus cut off from my parents drug coverage - weeeeee not). The pharmacist guy - who again, is nice enough - was going over my meds and I was telling him what I can take them with, what I can't, and blah blah blah, and he laughed and told me that I could probably be a pharmacist to which i thought, "Probably....wait: why am I trusting you with my meds again....?"

You will be shocked to know that at any point I did not think "you fucking idiot", and actually, the word 'fuck' never sprung into my head when referring to these people either.

So yes...all of this, and all of these wonderful thoughts, invaded my brain in under the course of an hour. I am now able to sit and enjoy my tea as I wait for lunch to roll around so i can pick up my sis from work, and then go to another appointment for immunology.

And while we're at it...I may look into changing my background again.

Don't hate.

Brain Purging

2010-08-09T11:09:00.004-04:00

It's time for me to get my shit together. Get my ass in gear. Start moving forward and stop living in the past. Get out of this lazy funk. That's one major downside of transplant, is that you get used to living and having all this free time, that when you actually need to do things, it's hard to find motivation to do it.

Things I need to do:

1) My OGS volunteer work

2) Job hunt - which i always am doing anways

3) Decide on what sport I will be competing in for the World Transplant Games in Sweden next year

4) Start training

5) Go to the mall and pick up another travel book, since it looks like my euro-trip with Evlyn is out:( I really really want to go, but after the games next summer in June, if i went on the euro trip, i'd be gone the whole month of July, and I need to be here because my sister is getting married next August 6th, and I'm the maid-of-honour so I kinda need to be here. BUT! Eve and I will just do another trip! She wants to come here to Canada so maybe we will do a contiki canada tour? Either way, we'll do something

6) Pay fall tuition fees - hate reminding dad of that, ugh

And then there is the immediate stuff i need to do, like go back to the docs for another antibitic. I'm not sick again per ce, because after pneumonia i went on an extra 7 days of Avelox because i was coughing a bit of shit up, and i wanted it erradicated. We had a feeling that it wouldn't work, and that i would begin to become resistant to it, and that is the case. I feel like the Avelox worked abit, but there is still a small bit of mucus in my main bronchus/trach and i want it gone, so i'm going in for an 'emergency' visit today to get something else....It works out, because i also discovered a nice massive bit of heat rash on my scar. Wonderful. Beautiful. Amazingly magical. It doesn't hurt, because i have no feeling under my boobs, but it was flaky after my shower this morning and quite gross. So in all actual-ness, it works out, i can kill two birds with one stone: get a new antibiotic, and get a topical cream for my wonderful rash.

Another immediate thing I need to do/already did, was email the woman who has been contacting me for RecylceMe about how I can fundraise in order to go to the games. I'm glad I did it now as opposed to in the winter when time would be coming to a close. Ugh. So much to do....so so much to do. And this is not including my fall course (which is a first year and once a week so really, not that bad) and then be a maid-of-honour for my lovely sis. I need to figure out how to do that, because I don't know how to be a maid-of-honour. Maybe a maid-of-laziness but not maid-of-honour.

Oh yes, I also wrote back to my donor family. Will give it to my co-ordinator at clinic next Monday.

Ok. Brain has been purged. I feel better now.

P.S. Alice got married on August 7th - my one year. And i've seen the pics and she looked so gorgeous that i shed some happy tears for her. It seems like yesterday that we were both waiting for our transplants and wondering if we'd ever get married...and alas, she has! Congrats to Mr. and Mrs. Chris and Alice Vogt! :)

1 year ago today

2010-08-07T00:46:00.004-04:00

On the 7th day, of the 8th month, of the 9th year, a single star fell. And when it did, my world alligned. Suddenly, things had fallen into place for me...

Here I am, one whole year later. At 12.45am on August 7th, 2009, the phone rang.

"Hi Brianne, it's Trillum Gift of Life calling. We have a set of lungs for you. How soon can you get here...?"

And so the journey began.

Has it been a year already? Because I'm pretty sure it feels like yesterday.

So off to Toronto we rushed. We got there at 2am, and I got xrays and the like done. Then we spent the next 16 hours waiting in a frigid ICU room for the go-ahead. I couldn't eat, so everyone around me had Tims while I feasted on ice chips. Finally, at 7:20pm, i went into surgery and came out 10 hours later.

And i've been rockin' ever since.

Only 80% of transplant people survive the 1st year.

For once, I am in the positive side of the majority, and I intend on keeping it that way for a very long time.

On Tuesday I got my donor letter...

I remember walking to the mailbox and feeling sick to my stomach. I knew it had arrived. I read it in the backyard and cried. Much of my speculations were confirmed.

My donor was a man in his early 50's. He was a husband and a father. He died of a stroke at dawn on the 6th of August. And now, he is my hero.

It's crazy what a year can bring...what a year can do and a year can change. I will be wearing my t-shirt today with pride:)

Much love to you all, and especially my donor and his wonderful family (who wants to keep up writing back and forth - how lucky am i?)

Happy 1st birthday to me:)

So speechless....

2010-07-28T15:36:00.003-04:00

I've had a shitty day - it seems like everyone has.

First i found out I can't do roller derby b/c it's a contact sport - I can't do any contact sports, so that royally bummed me out, and nothing anyone said or did could cheer me up. Jenna sent me a link on weird sports that people could do and the only thing that put even the slightest ray of sunshine into my darkened mood was an actual sport called 'shin kicking'. Yes, shin kicking, where you kick people as hard as you can in the shins for fun. The next closest mood booster was mentions of going on a hunger strike, a national geographic special on death camps, and thoughts of zombies.

And then Jess called me to tell me about her bad day. She woke up, discovered a flat tire, pumped it, backed out of her drive way......

and ran over her cat :(

Rest in Peace Toby, you were awesome and I will miss squeezing and loving you:(

This morning i had a meeting for RecycleMe.org and my friend Carol was there. We were talking about all things transplant when the mention of donor letters came up. I mentioned how i wrote mine back in October but hadn't heard back, but how i wanted to but felt i never would. I don't remember if she said she wrote hers. But either way, i was bound and determined to live my life never knowing a single shred of anything about my donor.

And then my co-ordinator called.

A letter from my donor family had arrived at the hospital....

Some cool stuff

2010-07-25T15:12:00.002-04:00

Lots has been happening these last few days. Cool stuff, exciting stuff....stuff in general.

First: MY SISTER GOT ENGAGED!!!!!!!! How exciting!

Second: I AM JOING A ROLLER DERBY TEAM! Yes! For real! I am joining with Krystal and my friend Laura. We are sooooooo stoked. To quote Krystal, we are excited to "push and shove people" and generally get the collective shit knocked out of us. AND! Hopefully we get names. So far this is what we've come up with:

Krystal: Fire Kracker

Laura: Ankle Biter

Me: Biggie Smalls.

For real!!!!!!

Third: I never went for my IV on Friday, because they were understaffed, so at some point this week, amongst all my other shit, i have to go in. My week is insane.

Monday: PFTs, blood work
Tues: x-ray, roller derby meeting
Weds: RecycleMe thing, follow up "i has pneumonia?" appointment
Thurs: nothing, IV maybe?
Fri: brunch with the physio gals

Yup, but i'm excited to have stuff to do for once. Today i'm sitting out on the deck, with a tea, working on my Ontario Geneaological Society stuff. It's sooooooo cool. Unfortunately, due to confidentiality, i can't really disclose much else.

My parents are on vacation for the next 2 weeks, and at some point we're going to go up to Durham to visit my grandma c's grave, because we havent been since she died back in '96.

Would you like to hear a funny story about that? Yes, yes you would.

When my Grandma C died, she had a dog named Cuddles. Cuddles thus went into the custody of my Aunt Pam. Well, Cuddles died this past year, and Aunt Pam had the wee creature cremated. But whatever did she do with him? Well, she called my Aunt Katharine-Anne and made a trip up to Durham with a bright idea. Together, they went to the cemetary where Grandma C is burried and brought a spade.

And they dug a hole.

Where Grandma C is burried.

Yeah. We're all aware that this is entirely illegal, but at least Grandma and Cuddles are reunited at least, eh?

*smiles all around*

What else? I just finished talking to my cousin who i don't get to talk to all that often. Thank god for facebook and it's ability to track family members and people. I always make a point to go out of my way to message my family members because I think it's incredibly important to stay in touch - no matter how weird or distant or whatever some people can be. And always let them know you love them, because family is important.

In other news, we have 2 frogs in our pond! They're small, and we beleive they came to our pond in a bit of plants that dad stole from a swamp one day.

Anywho, that's it for now. Must go get another tea: mine tastes like shit.

Nobody Knows

2010-07-22T11:10:00.003-04:00

...if I go for my IV tomorrow or not.

You'd think i'd be able to remember if i get it every 4 or 5 weeks, but truth be told, I don't really know. And apparently, neither do they. The last time I went was June 25th, and the nurse said, "we'll schedule you for July 25th then..." - making it one month.

But July 25th falls on a Sunday....so I'm wondering if she meant tomorrow, July 23rd, or the week of July 25th, which would mean i go in on the 30th. So i rang the hosp up, and after explaining my confusion, I only succeeded in confusing them. So they have to call up my medical records and look to see if i'm every 4 or 5 weeks, because no one wrote my appointment down. Good thing i called. I'm not angry over this at all - i think it's funny.

Usually, the week I need to go for my IV i feel shitty: unmotivated, can't be peeled from the couch, just generally like I have no energy. But this week I'm not too bad to be honest, but again, it can vary month to month. So we shall see.

Yesterday was exciting. It saw me galavanting over to TO for my bi-annual appointment at Sick Kids. It was scheduled for 11am and i was in an out before 12 lunch! A miracle i say! AND! NO BLOOD WAS TAKEN! WEEEEEEEEEEEEE!

But it doesn't end there. Oh no. In my homesickness for TGH i wondered across the street and into the hosp, where i had the fortune of seeing so many friends! First, before my appt at Sick Kids (the bus got in at 9:45), I went to the physio room where I saw Cynthia (she got her tx in June and waited exactly 3 years to the day). She looks FABULOUS and i couldn't've been more happy to see her. Then i ran into Vivian and his wife (yes, his - Viv is male), and he looks great. He asked me if i'd come back after my appt to join them and a few others for lunch, and I said i'd try my best to make it.

Luckily i did! I ate lunch with Sandi (who's still waiting), Amy and Kendal, Vivian and his wife, and Sharon. It was so lovely to see them all since it's been months since i have! Lunch was at 12 and I stayed until 3:30 just chatting and hanging out and catching up. I truely love my transplant friends more than i think i can verbally express it. If i have one shred of advice for anyone waiting transplant, it's this: make friends with your fellow tx'ers, because they are relationships and friendships that you will have for life, and no one will understand you better than them. Gather them around you and hold them tight and value them as if you value your own family, because unfortunately, you don't know how much time you have with them. You may have years, decades, centuries...or you may only have days and months....But regardless, make the effort to make friends with your fellow tx'er because they get it.

I spent most of my time chatting with Amy, who just had her second tx in January. She's had consistent issues post, and i think it was good for her to see me because she was able to get a lot off her chest. She didn't know i was coming and practically cried when she saw me. She has 2 tickets to see Legally Blonde: The Musical but no one to go with (she doesn't want to make her husband see it), so i said I would go and her face lit up when i told her i'd go with her. So that will be within the next few weeks.

We shared with eachother our transplant hallucinations (she thought her husband joined a rockband and left her), and in the secrecy of the hospital bathroom, we lifted our shirts and showed eachother our transplant scars. It seems silly maybe to some, but it's a moment and memory i will cherish forever, because to me it signifies an established bond of trust and friendship that we have together. It doesn't matter that our scars are identical and that we don't really need to show eachother, but in doing so, it loudly says 'i'm here, i understand, because i've been there too'.

I'm so glad I went to Toronto and didn't just go to Sick Kids and go home. I'm glad i abandoned all sense of time and bus schedules and just let myself be at one with the hosp and my friends and just enjoy the day.

And along those lines, I got my schedule for my 1 year assessment in the mail the other day. These next few weeks will be busy busy, because i also have other annual appointments, and follow ups for the pneumoia (which is pretty much gone, yay!). These next 4 weeks i literally have appts every other day, which is ok. It's normal for me. I should be paid to be a professional appointment-goer i think.

And in the midst of all this, I got a volunteer position with the Ontario Geneaological Society! I am a Family History Indexer, and i read people's family histories and record first and last names in Excel for a name index thing, and email the spread sheet back to the OGS. It's slightly more complicated than that, but that's the gist of it.

AND! I am volunteering for RecycleMe.org again next Weds, so that should be good!

So yes, lots to do, lots to see, lots to learn. I am excited to finally be doing something.

I think i have written enough for this entry!

The Inducer of Poo

2010-07-19T15:21:00.002-04:00

Poo and You!

It's no secret that crappy stupid iron pills and me do not get along, and will never be friends, or get married, but the shitty truth is (no pun intended), is that my iron levels are 75 when they should be 120 so i have to take them. BUT! Iron turns my stomach to stone and thus I do not poo. Example: 2 Thursdays ago I took 1 ferrous gluconate at breakfast, and one after supper, and i proceeded to not shit until the following Tuesday.

So I mentioned this at my doctors today, when I was there for an 'i has pneumonia?' appointment. She proscribed a laxative/lactose liquid thing that I'm to take twice a day after my iron pills. Essentially, how this will work, is that I'll basically have the runs forever. Whatever, i don't really care. Everyone has liquid poo now and then.

She said that the reason why i feel so unmotivated is due to the low iron, and not psychotic issues like i had suspected. So hopefully, with the 2 colace pills twice a day, domperidone 4 times a day, and now 1tsp of liquid poo giver twice a day, i should be nice and....unbunged.

Here's hoping.

On the pneumonia front, I am feeling a bit better. I say 'a bit' because i never felt sick in the first place. My doctor listened to my lungs of gold today and said they sound a lot better. I said the rotten cauliflower taste is almost gone, and I'm not coughing up goo anymore. Not that i was coughing up a lot of goo to begin with, but post-tx, you don't wanna cough up goo. So i have a 'script to get a follow up x-ray next Tues, and a follow up appt with her again on Weds to see how I am fairing.

And then i should be all fixed up in time for my one year assessment! YIPPEE!!!!!!!!!!!!!!!!!!!!

Um what else?

I'm suprisingly not sleepy today seeing as I was kept awake by sternum pain all night. Stupid cereal box *squint*. Thankfully, I am held together by a sturdy peice of wire.

Me thinks that is all.

All Good Things Must Come to an End

2010-07-14T16:01:00.004-04:00

Evidentally.

So i went to the docs yesterday to see what was up. There was a small amount of brown goo in the morning but it was like, dots of it. Of course. So off I went, and the doc figured it most likely was a mucus plug since I had isolated pain, and the brown goo had more or less subsided. Temp was good, wasn't short of breath, PFTs at home were steady....

Either way, i was prescribed 10 days of Avelox antibitiocs.

But of course, being a tx-er, it's not that simple. I got 3 requisitions: 1 for goo sample containers to bottle up any precious brown goo that i may harbour; a second req for an x-ray; and a 3rd req for PFTs. All of this of course will be faxed to TGH and compared with all my previous results.

So far, no results. But one.

My PFTs.

They are down.

To 79%.

Which i don't understand, since i'm not out of breath and i feel fine. It could be totally due to the fact that all machines vary, but who knows. Either way, i'm bummed out and the person who i don't want to tell is my dad, b/c he'll sigh and get all huffy and worry and it gives off the impression that it's my fault. Just thinking of it pisses me off.

The only good thing that's happened to me today is the discovery at the PFT place that i've lost 2lbs.

This effing sucks.

**UPDATE**
My doc called me with the results of my x-ray: PNEUMONIA.

I've never been so elated in my life. One would think your heart would sink upon being informed that they have pneumonia, but rather, mine lifted, so high that it actually sprinkled happiness on other people. I want to kick babies, throw myself against walls, eat a lot, and scream as loud as possible in celebration. BECAUSE IT'S NOT REJECTION IT'S JUST PNEUMONIA WHICH CAN BE TREATED WITH MY LITTLE ANTIBIOTIC FRIEND CALLED AVELOX!!!!!!!!!!!!!!!!!!!!!!!

WOO HOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

RAH RAH AH AH AHHHHHHHHHHHHH

2010-07-13T13:52:00.003-04:00

WEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!!!!!!

So Sunday night saw me, Katey, Krystal hauling ass on a 4:10 Greyhound to TO to meet up with Elwood so we could venture over to the ACC to see the one and only, fabulous, LADY GAGA!

As seen from above, (as telling as 5 pictures can be) we had a blast! If you love Lady Gaga and ever get the chance to go see her: GO! She is even better live than on her record. She sings all her songs live and has an amazing voice and is just full of so much energy and everything! Katey and i bought t-shirts too, woo hoo! The concert ended at 11pm and saw us cavorting down Yonge street passed Union Station, taxi cab after taxi cab, hoards of people and the like, and finally to a cab driver who had no idea where the bus station was. *rolls eyes*

Clearly, we made it home. And i'd do it all again. There were lots of stairs at the ACC and i did all of them and was never once out of breath. WOO HOO! People were dressed outrageously and it was fabulous, and my friend asked me what i wore. I told him i dressed like a muppet.

What else? Sunday morning also saw me waking up with horrible pain in my lower left lung. And coughing up brown/slightly bloody goo. But it only lasted sporadically throughout the morning and stopped. But there was this horrible taste that accompanied it: rotten cauliflower. Ugh. So gross. Monday I woke up fine, but had that horrible taste whenever i breathed out, so i bit the bullet and called my doc and got in for today at 4:30. Today i woke up and coughed and there was nothing, but then some more brown spots showed up, same as the gross rotten cauliflower taste, and pain in the same spot. I dunno what it could be. I'll prob be put on antibiotics, that's for almost certain, but i don't feel sick, and i'm not out of breath, and i don't have a fever or anything so...

It has been really hot this last week - and humid, and i'm wondering if maybe that made things occur? because in all my x-rays there has been a small spot of mucus in the bottom of my left lung, which is where this is coming from...so...did the humidity stir it up? Who knows? I feel wonderful either way, have been walking, hiking, biking, not out of breath so...

AAAAAAAAAAAND as always, the stupid anemia *scowl* which can cause you to bleed in bizarre places so who knows? I'm a mess. I'm falling apart. Must be sewn up to be kept together.

A Simple Kinda Life

2010-07-10T14:31:00.004-04:00

I've been thinking.

As I usually do.

And once again I've come to this conclusion: i want a simple kinda life.

I need to stop comparing myself to those around me, because by doing so, I am just left feeling like a total loser who's going nowhere in life.

While I have friends my age who are going ahead, doing jobs they went to school for, or are on their way there, I need to just stop comparing my (so far) lack of success, to theirs.

So what if i have a friend who's a designer, my sister's a teacher, my friends who are teachers as well, or who generally, have better jobs than me - or jobs at all. It will all come in time.

Do i want to go to school for my masters? No. Not really. I'm kind've over the school dealio to be honest. I'm not academically inclined in the least.

So maybe, just maybe, I will follow through and eventually open my own little tea shop, get a dog and live in a modest little stone house.

A simple kinda life. I like it.

Who cares if i don't own a raging successful business, or become a CEO or something massive like i feel compelled to do. I need to do what makes me happy. And if saving up to firstly, go on my Euro Trip with Evlyn, and secondly, save up for a dog, and thirdly, work anywhere to save up for my own little shop, why the hell not. I just have a vision of myself living alone ( i want to get married but doubt there's anyone out there for me for some reason. Who knows tho?), with my Newfoundland dog, together, in a little stone house, with a massive garden all around in the country, being the cool aunt to my sisters kids when she has them.

Maybe i'm just retarded. Who knows.

Anywho.

Yesterday was spent all day with Jenna. Yes, Jenna who fled to the Wilderness. She was only back here for a day before going up to Ottawa and then Niagara to see her bfs fam jam for a week, but it was great to see her nonetheless. We spent from 9am - 1:30am together, having breakfast, mall walking, lunch, downtown touring, Bollywood Bistro-ing, and then Bowling with everyone to cap off the night. It was grand.

Tomorrow, me, Katey, Krystal, and Elwood are seeing Lady Gaga in concert! AHH! This revelation elicited a loud "FUCK YOU BREE!" from DJ at the bowling alley last night, because he wants to see her "so bad", so bad to the point that he'd ask his grandma for $500 to get tickets from a scalper. Who knows? Will we see him there in all his glory?

So that's all for today. I like dreaming, and hope to make this a reality. I'm off to read then take the girls to the park. I'm also talking to my friend who just told me a schizophrenic is roaming his street up and down, so I told him to call the humane society just to be safe.

Au revoir.

Like woah!

2010-07-05T10:34:00.002-04:00

WOW! Lots to write about!

Where to start? *scratches chin philosophically*

I'll start with the good/weird.

I had a dream this morning that I got a second lung transplant. I went in for a regular appointment and the next thing I know they tell me that I need another pair of lungs, so i'm immediately re-listed and the next thing i know is they tell me, "we have a pair of lungs for you". A pair that is apparently better than the ones i already have? So i'm wheeled in, get the surgery, recover uber fast and have no pain or anything. I was only out of surgery for like, an hour and I was completely lucid and had no pain and was walking and everything. The next week after surgery i'm at a baseball game pitching windmill and told myself i probably shouldn't be using my arms so violently b/c of my incision/sternum (i used to pitch). THEN me and the fam jam end up in New York at the top of the Empire State Building and we're doing the stairs and it's effortless, but it was in the middle of a terrorist attack or something?

Anyways, point is: i got another lung tx. How weird.

But even weirder is this: i got a text from Alex this morning telling me that our friend Hattie got the call for lungs! She was wheeled into surgery about 15 minutes ago! How crazy? Did i intuitively know? Mayhaps!

But I also beleive that this dream interplays with a fear of mine: a fear that I could get sick again at any point and not realize that i'm sick. Does that make sense? That i'll get sick and not recognize it? And be caught off guard? I hope not. Blah.

Either way: woooooooooooo spidey senses!

And speaking of spidey...I had to take the Heidi-Speidi to the vet today. Heidi has been assigned the new name of Pee-pee cat, since lately she's taken to randomly peeing everywhere.

Here are some examples: the hall mat, the kitchen mat, the laundry room mat, the bathroom mat, the family room carpet, the living room mat, my mum's fur coat, and inside my favourite ever purse. To name a few.

So off to the vet the Pee-pee cat and i went at 8:45 this morning. I always feel a little embarassed when i take her to the vet b/c she's so scraggly/homeless looking. I can brush her all i want but she still looks that way. She's always looked like this, no matter how much i brush her. And she's got bare pink patches above her eye that have always been there. And she has random scratches on her face from her nails and Zoey being mean to her. Oh, and she gets sleepers in her eyes too and they tend to run down her face, but i had the forethought to clean her face up before presenting her to the veterinary world lest i be seen as a horrible pet owner who doesn't give a shit about their precious cat.

Anywho. The bill came to $326. Thanks stupid HST! $326 and all they did was blood work (gereatric screening), an overall exam, and urine sample.

So far, here is the verdict:

She has really bad teeth.

She is 2lbs underweight.

She has a heart murmur.

And a mishapen iris.

:(

My poor Heidi-Speidi. My poor, old, decrepit Heidi-Speidi.

So now we sit and wait until the blood results come back. I looked on the age chart in the examination room and saw that a feline of 16 years is 80 human year. Which is a funny thing because i love my cat to peices, but i'm not overly fond of old humans.

If you don't feel it, it doesn't exist!

2010-06-30T14:57:00.004-04:00

Once again, a monkey wrench named 'anemia' has been thrown into my blood work. And i refuse to beleive that said condition exists since i feel fine - minus the sleeping for abnormally long periods of time bit and the odd bit of dizziness and the feeling of tingliness in my legs upon extreme exertion. My philosiphy is thus: if you don't feel it, it doesn't exist.

And that my friends, is the moral of the story.

I refuse to take iron pills because they turn my gut to stone and i then turn into a miserable uncrappable sod who reflects upon former days of being able to crap freely. But instead i sit and mope and spite the tiny little iron pills who i hold soley responsible for the unforunate state of my stomach. I try my best to eat foods that are 'rich in iron' and blah blah blah.

Blah.

But! Stupid supposed 'anemia' aside, things are swell! I've exercised almost every day since Sunday and I'm quite proud of myself! Sunday I went for a walk with Krystal and the Buffasaur, and came home and made (from scratch) 3 loaves of cinnamon raisin bread as per my sister's request, and 2 batches of chocolate chip banana muffins. Mmmmm. Monday *drum roll please* I RODE MY BIKE FOR THE FIRST TIME IN 5 YEARS AND THE FIRST TIME POST TX!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! *applause all around* weeeeeeeeeeeeee! And it felt wonderful! I kept wondering when the short-of-breathness dealio was going to kick in, and it only really did when i attempted to ride uphill, which, holy fuck people, is a feat in and of itself. And i wouldn't even claim this to be a 'hill' or any sort; it was more like a lump, but my thighs threatened to snap in half and burst through my skin. As for the lungs, it was just slight laboured breathing that is easily controlled and not the result of illness or rejection but just generally being mildly out of shape. I can hike for 4km easily, but riding a bike requires more thigh power than i possess, so we shall work on it!

Yesterday i took the girls for a walk at the university, in the Arboretum (it's like giant botanical garden, truely lovely) and we had a great time. Ironically enough, as i was debating which path to take, I was lured to the left whereupon i was greeted by a sign that said "Wall-Custance Memorial Forest". I had always wondered where this mystical place resided because when Karyn died, the funeral home planted a tree in her memory. So this is where it is! my brain thought. As as I made my way to the plaques to see if i could find her, "Breathe Me" started to play on my iPod. A sign from her? Maybe...because it's currently one of my favourite songs. Needless to say, I didn't find the tree planted for her but it truely moved me to see that people care enough for their loved ones to plant trees in their memories as well as contribute to the environment by restoring it's oxygen-giving counterparts. Hurray!

Anywho, onto the horror story that happened to me - or us, rather. So the girls and I are walking down a trail when i see a sign that says, "<--- Nature Valley Trail " Ooooh! my brain said. And in we went.

We're well into the covetted nature valley trail when we reach a boardwalk. It seemed sound enough so the girls and i took it, but could only go so far when i noticed that the rest was utter muck. So we turned around. As we neared the end of the boardwalk back to the entrance the girls leashes got tangled, which bothered me because they are constantly entwining themselves. As i was in the midst of sorting out what leash belong to who, I had one dog to my left, and one to my right, when i felt a violent tug on the right-side leash. I looked around. Maddy was missing. And that's when i saw it.

Maddy had gone overboard. Into the muddy pond 5 feet below.

And the only way to get her out was to jump down myself and get her.

Wearing white.

So down i jump. Try lifting a sheltie whose been stuck in the mud out, as the other sheltie decides it's the perfect time to fall down and get her foot stuck between the boards. Brooke is up on the boards, scrambling away like a fool as i'm failing to lift Madyson out of the muck. It's at this point that my patience crumbled and i yelled, 'HOW THE FUCK DID YOU MANAGE THIS?!'

*sigh*

Long story short, we scaped, no one was injured, and i realized that i had no option but to just laugh at what had happened.

As we left, I decided to venture back into the Wall-Custance Memorial Forest in hopes of giving it another go at finding Karyn's tree. And this time, as i entered, "My Immortal" came on my iPod.

That's the song i listened to 7 times the day she died before i even knew she had passed away.

A sign? Perhaps!

As for today's exercise, i rode my bike to the grocery store to pick up some beef soup broth for the homemade soup i'm making.

And here i sit, listening to piano instrumentals, reading, cooking, and enjoying all the things that life has to offer.

Still job hunting, but lets not spoil a good post with the moanings of that.

And! What else makes this day more perfect is the copious amounts of tea at hand. Woo hoo. And next to all the exercise i'm doing, i'm also eating better and my body feels good because of it. Woo hoo!

It`s a scortcherr!

2010-06-23T13:02:00.004-04:00

EDIT: WE JUST HAD AN EARTHQUAKE!!!!!!!!!!!!

I write to you from the premises of my backyard deck. Currently, it is 31*C with a humidex of 38*C (like, 100*F for you lazy american friends of mine who refuse to learn to convert C to F). I LOVE IT. And what`s even better is that this is the first post-tx entry i`ve written that takes place outside! woo hoo! I remember writing a few entries last year from my deck in this kind of weather, hooked up to oxygen, dizzy, coughing everywhere, dying all over the place, and exhausted. But this year? BLISS! WOO HOO! I feel completely awesome. This morning I got a call from my co-ordinator informing me of my 12 month assessment date! It is aptly scheduled for Monday, August 16! WHO KNEW! AHHHHH!

I am very happy overall. My mental state is good today so that makes me feel good. I havent been as agressively looking for jobs as I was however. I'm still looking, but i'm not a complete fiend about it. I've finally found balance and ways to keep myself occupied: I'm back to reading a lot, going for hikes and walks with the dogs, and baking. Friday I baked 4 loaves of the highly covetted Mama Bread (thanks Jenna! Sent all the way from the Wilderness!) It took me 7 hours to make. I started at 11am, punched the dough for an hour (my arms threatened to break off at the shoulders), let it rise for an hour and a half, re-punch, let rise for an hour and a half again, re-punch, pour into 4 loaf pans, let rise for another 2 hours....but it was fabulous! And today i used that bread as sandwich bread! Mmmmmmm. There's something so satifsying in being able to say "I made that". Yesterday I made Newfoundland Partridgeberry Bread - but since this is Ontario and we don't have partridgeberries, i substituted said newfie berries for cranberries.

The bread calls for the rind of one orange, and the juice of said orange. The bread is very orange-y. But it's good. It's good with tea and stuff. Dad likes it.

Father's Day was grand. I cleaned the whoooooooooooooooooooole house: dusted, vaccumed, sanitized, you name it. Main floor, laundry room, bathroom, stairs, upstairs, bedrooms, upstairs bathrooms...I went on a frenzy, and I loved it. Why? BECAUSE I CAN. I can clean now and my chest doesn't pain me, and i'm not hooked to O2, and i'm not coughing and out of breath. It's lovely, and it's those domestic moments that I love experiencing.

Um what else? They are calling for severe weather this afternoon, and it better frigging happen. There are too many times when they call for thunderstorms and they just don't happen, which is disappointing for a storm lover like myself.

Ehm........I'm back to reading An Echo in the Bone by Diana Gabaldon and totally loving it so that's good. It's only taken me almost a year to truely get into it. But i'm glad i'm back into it!

Aaaaaaaaaaaaaaaaaaaaaaand before I go, June 21 would've been Megs 1 year, and i can't fucking beleive she didn't make it to see it. I was speaking to her brother on FB 2 weeks ago and it really hit me that she wasn't here anymore when he said he was going to go visit her at the cemetary:( It never seizes to pain me when I hear the mention of my friends who've passed in the same sentence as 'cemetary'. Megs+cemetary=sadness. I miss you woman. And I miss our chats. A lot. We could tell eachother everything, and we could bitch at eachother, because we loved eachother enough to be mean to the other person. One of our last convos consisted of me bitching at her to get off her fat ass and get food at the grocery store and make something healthy instead of ordering food or going to a restaurant. She bitched back that she didn't have the money to go to the grocery store, to which i said, "you must, if you're going to a restaurant"...and though she was mad, she later thanked me.

Gah. Post tx life, you are both beautiful and incredibly cruel. But it still doesn't make sense that megs isn't here still going through this with me. I am again, on the Island alone. *sigh*

Anyways...here's some news that'll make you happy: nana and papa news.

Nana got a walker. She calls it "The Machine".

Over and out.

Mozel Tov

2010-06-17T18:28:00.002-04:00

I feel like i'm dying.

No, not in the physical sense. The body is alive and well, but mentally, i feel like i'm dying.

This is normal, of course. I go for my monthly IV next Friday and i always begin feeling like this exactly a week before I need to get it. Having a blood disease sucks. When I need to get it, I just feel lethargic, mentally numb, blah...and yeah, I pretty much just want to lounge on the couch and not be bothered. I just feel unmotivated, low on gas, can`t be bothered.

Like i`m dying.

Anywho...

I made 4 loaves of bread the other day. Multigrain Mama bread to be exact, sent from the Wilderness, delivered to my door, directly into my tummy. It was fabulous, and my next recipe to tackle will be Newfie-land Partridge Berry Bread. Mmmmmmmmmm.

Today, I`m having a huge prednisone fail. I just can`t seem to stop eating. Cheerios, orange, watermelon, 5 oreos, Nature Valley bar, crackers, then spaghetti. All i want is an extra large tea which i shall promptly go get. And maybe a donut since i`m a humungus pig.

What else?

I think that's it, but i'm sure I'll think of something the minute i log out.

Where Are You?

2010-06-10T00:33:00.003-04:00

I laid on the floor tonight

And thought about you

Listening to the same song over and over again

And I wondered where you were

My donor

Are you there?

I think of you often

And it brings me to tears

I don't know how you died

I don't know anything about you

At all

All i know is that a peice of you resides in me

Perfect neighbours to my heart

They fit in well

But what about you?

Are you in the ground somewhere?

In ashes do you lie?

Something beautiful once had died

And the tears burn my eyes

Starkey Hill

2010-06-08T14:28:00.005-04:00

Yesterday was my 10 months post tx! To celebrate, I walked a 4k trail with Krystal again. We brought our dogs and had an absolute blast!

The view from the summit

The girls - not acting like assholes for once.

This was our second trip on this magnificant trail, and unlike the first go 'round (note final picture, it started to torrential downpour on us. Dogs, humans, 5 bitches completely soaked), this time i took a humungus spill. We're not talking just a small fall, oh no, we're talking an all-out plummet from a standing position to flying over a rock that appeared out of nowhere, to landing in full-on victims pose, apple bits scattered all over the trail, sunglasses askew, shock-and-awe all around kinda fall.

As you can see, I gashed my palm open. When i told my parents the tale of my fall, my dad could only counteract with a "make sure you don't land on your back or chest and hurt your lungs" *eye roll*. Well, it's almost 24 hours later and I'm still wholly in tact, thank you very much. I felt wonderful after doing the largely inclined trail. To just be able to breathe and do it and not get out of breath is wonderful. Yes, I do get out of breath like a normal healthy person does when they walk up steep inclines, but there is a difference from pre and post tx out-of-breathness. Pre-tx, I got out of breath doing everything, and there was a sense of panic and ugency with it. Your lungs can't expand fully and they more or less constrict and you can't inhale to your full ability which makes it worse. Post tx, you can regulate it. Take deep breaths in and calm yourself down. You don't need to stop walking or sit down because you feel like you will die all over the place and kill people out of rage. You're fine, and it's ok.

I've been in a very good mood lately. Not worrying about things, not worrying about a job (obviously i'm looking, but i'm not bummed out), just overall happy which is grand. Last week I made an awesome lasagna, and Sunday I watched Discovery channel all day because that special called "Life" was on. I made beer chili, and while it was completely awesome, it was also completely spicey and i don't think i exaggerate when I claim that it set everyone's asshole's on fire the very next day. Ermmmm i don't know if there is anything else for me to write about? I know a good entry was in order since i've been writing poem crap lately and i know that doesn't offer any real insight as to what yours truely has been up to.

Can't wait for the next trail walk with Krystal! Here's hoping neither of us fall (Krys fell twice during the downpour, I fell like a champ yesterday, and we got rained on the first try, dogs included)

Actually! I must mention this: you know how i always talk about getting signs from Karyn, and Megs, or just signs in general? Well i never thought that I could be a sign for someone else. Yesterday, after my massive spill, we were back on the trail when a woman appeared on the trail headed our way. She saw my dogs and her face lit up. She came up to us and was saying how beautiful they were (to which i proclaimed "when theyre not acting like idiots"), and asked if they were related. I said yes, they're mother and daughter, and she automatically knew which one was the mother (Maddy). She was just so elated to see them and her face lit up as she patted them. Then she looked at me and said, "I used to have 3....havent yet gotten a new one since we put our last one down..." and it was almost as if seeing the girls was a sign for her letting her know that it was ok, that she could move on and get another one or something. Just seeing the girls and patting them made her so happy, it was nice to see. I'm glad that when they're not being spastic that they can offer hope and comfort to other people other than us.

Ok that is all. Here's a pic from our first excursion when we got caught in a torrential downpour. We're soaked!

A Letter to my Scars

2010-06-02T01:19:00.004-04:00

I looked in the mirror tonight
And saw you were almost gone
Distant
Faded
Memories of a not so distant past
Yet the gap that bridged and made my future

Inspection
Healed skin so soft to the touch
Yet a touch I cannot feel
Disconnected and healed nerves
Of a scar that snakes around me
Keeping me whole
Keeping me closed
Healed
Healthy
Breathing

Chest tube scars
2 on the left
3 on the right
Memories of tortorous pain
Just memories now
Of an experience that shaped and made me
Do not escape me
Do not disappear
Stay as dark and scary as you need to
But do not leave me
As you remind me every second
Every minute
Of what I have been through

I carry you day in and day out
With pride
beneath my clothes
My little secret
My pride
I have the privalege of seeing other people's curiosity at will
Hidden
Yet so loved

My scar
I love you

Thoughts

2010-05-26T23:30:00.002-04:00

I feel lost
Unsure of where to go
Need to crawl out of this hole that i've found myself in
Nothing satisfies me
Need to do something
Need to find a passion
Compassion?
Inspiration
Have no passion or motivation
And i hate feeling this way
I feel lost
Stopped
Stuck
Unsure of where to go

I feel like I live in a circle. I find myself in this mood/frame of mind often since my transplant - well, ever since I have nothing to do. I need to create something, but i can't find the motivation. I know a lot of why i feel this way is med induced, which sucks. I want to know if anyone else feels this way post -tx or if it's just me who's fucked in the head about where to go in life.

Maybe for the time being this is where i'm supposed to be? but that doesn't make it any easier, less frustrating. I do the same thing day in and day out: wake up, get ready for the day, check emails, visit Finn, come home, clean....It's boring.

I've thought of writing a book, been encouraged by countless ppl to publish my blog, and I really want to, but I don't know how to go about it. Can I even do it? Am I brave enough?

I hate thinking. It must be stopped.

I ran over a squirrel today. I was on my way to Timmie's when it ran infront of the car and went 'thump, crunch'. I felt so horrible that i stopped in the middle of the road and got out and sat next to the poor creature to make sure it wasn't suffering, b/c if it was, i was gonna pick it up and take it to a vet. Seriously. i felt horrible.

Don't get me wrong, I don't mind having all this free time on my hands, I wish i had something to be motivated/passionate about. And I do, i just don't know how to execute it other than through blogging. I hate feeling this way.

This probably makes no sense. And i'm sorry.

Signing out with no pants on,

Moi

May 2-4

2010-05-21T00:24:00.005-04:00

Finnegan Vernon Perry

Weeeeeeeeeeeeee!!!!!!!!!!!!!!!

IT'S THE LONG WEEKEND!

AND THIS YEAR I AM GOING AWAY!!!

WEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!

FOR THE FIRST TIME SINCE BEFORE I GOT LISTED!!!!!!!!!!!!!!!!!!!!!

*squeeeeeeeeeee!*

I am going up to Jess's trailer up in Port Elgin - I havent been since 2006. So stoked! There are a ton of people going which just makes it more special.

Typical me, I just packed now at midnight, had my shower at 11pm (after a FANTASTIC season finale of Greys! Who didn't wanna pull their pants down it was so intense?!). And i packed all my meds. Probably stuffed too many clothes into my ugly duffle bag, and also a bright flowery blanket. Weeeeeeeeeee! So excited! Mum's dropping me off at Jess's at 9:30am and I hope we stop at Timmie's as an XL English Breakfast tea is in order for the journey up to cottage country. Woo hoo!

It was gorgeous out today - about 27*C. My sis and her bf bought a chocolate lab on Friday whom they named Finnegan (pictured above), and I have been appointed as babysitter in the afternoon. I go over to their place at 11:30 and let little Finn out and feed him lunch, pee him, and play with him until the little creature tires out. He's adorable - but he bites, and he bit my crotch the other day. Not cool. He also likes to try to eat stones and enjoys barking at the rake in their backyard. So this is what I will be doing every day until i can find a job. I don't mind doing this in the least! It's so fun! I love my little chocolate nephew!

As a result of the warm weather, I have my window wide open and am sleeping with my blind up and curtains open. I love nothing more than sleeping with my window wide open in the summer time, letting the warm summer air in, and I love being able to wake up as the sun does too.

Life is fab. (and my spiro - which i just did - was 1.98L tonight, which is 98% total lung function for me)

WEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!!!!

A Sign...

2010-05-18T14:27:00.006-04:00

...from Megs.

I got one today, and realized I've been getting them for the last dew days.

On Saturday - before i found out she had died - I was in the backyard and out of nowhere 4 monarch butterflies appeared and fluttered all around me. I knew then that she had passed. Her angels had come and took her away so she'd not be alone on her journey to the afterworld.

Later that day I was at a nursery with my mum and out of nowhere a single monarch showed up and flew up, up and disappeared into nothing.

Then today I was on a drive looking for new walking trails when out of nowhere a single monarch began fluttering around me. Persistantly. It just hung out and then I realized, "it's Meghann...letting me know she's still here." As soon as I made the connection, it flew away.

And then I began crying. Today was the first time I shed a single tear for her because i've just been in shock and denial.

I miss seeing her sign in on MSN, or facebook chat, and I miss our random text messages. I miss our Skype and webcam chats too.

I never thought megs had the strength to die. But i guess I was wrong. Because she did. She's moved onto bigger and better things. We haven't lost you, you've merely taken on a different form. You are free now.

Fly free my wonderful Megs. And breathe easy. I will always keep cheesie puffs on hand and think of you - and then get my fat ass in gear because of it.

Here's my fave pic of Megs. It's pre-tx, but it encapsulates everything that she is and was. I don't want to post any post-tx pics because she wasn't happy with what the pred had done to her. So this is how I will remember my Megs, a silly, compassionate, naughty, feisty, complainer, lol.

Now, my friend, you are only in my memory...

"Let me go gracefully..."

P.S Megs, please take care of Casey up in Heaven. You knew how much he meant to me, and you're probably wondering why he's up there. Give him lots of hugs for me because he likes to cuddle and he won't go to sleep without them. I'm sending hugs to Neeko for you - i know you're missing him as he's missing his Mama.

This effing sucks.

Red

2010-05-18T01:40:00.003-04:00

From this... To this...

Whadya think? Don't know why the second pic is so effing small...

Quel Horreur

2010-05-16T21:11:00.002-04:00

Megs died.

She died yesterday morning at 11:30am. She had RSV and it damaged her lungs, and she had a buildup of CO2 which hurt her other organs. She had been on the vent for over 2 weeks.

I'm at a complete loss for words. I don't even know what to say. I havent even cried because i don't think i can. I'm in shock and i'm incredibly angry. Megs was one of my best friends and we told each other everything. We got our transplants a month apart and we recovered together like she said she would. I will miss text msging back and forth, talking about asshole boys, and i will treasure the night when i was a few weeks post tx where we chatted on webcam for hours and compared our tx scars and battle wounds. Oh how we laughed. We laughed until we cried. We laughed until it hurt. We laughed because we could.

I miss Megs already.

Onto other things...

I gardened with my mum yesterday and it was fab. Last year i couldn't garden b/c i couldn't bend over and breathe...I'd get out of breath from all the digging, but this year i wasn't out of breath in the least. The only thing i wish i did was stretch before hand, b/c holy fuck people, my crotch feels like it's been pulled in 4 different directions. Who knew squatting was so dangerous!

As a result I woke up feeling sore today. Back hurt, legs unfunctioning. To add to this, was the scary fact that i had a raging headache, was dizzy and had a temp! Luckily, my temp has gone down, headache as fucked off, and i'm no longer dizzy.

Lastnight on a whim i decided to colour my hair bright red. So far, i'm likin' it!

Sorry this isn't more interesting. I just don't know what to write.

You never know...

2010-05-13T23:57:00.004-04:00

They say when you reach transplant you trade one disease for another, one set of complications for another, one life for another, and that things can change in an instant.

Lately, this couldn't prove to be more true.

For myself, for my friends, for everything.

Got my bronch results back earlier this week. Mild rejection. Wasn't what i wanted to hear at all, but i know it could be worse. My co-ordinator didn't seem overly concerned, even referring to it as 'a very small amount' of rejection, and that my prednisone was in fact going down. I am now on 7.5mg and 5mg alternately. From my understanding, mild rejection (also known as Grade A) is just some inflammation that goes away on its own. I don't have a temp, and my PFTs are stable in the 90's. So i guess I'm good. But still, it sucks, and it's scary.

Jason, my TGH friend, passed away a year ago today. Rejection again. He had just turned 23.

And now there's my dear Meggs, my fellow sister in Bronchiectasis, who's fighting in an ICU with either RSV or rejection. She's on a vent, and is unstable, and things don't look good.

And I am gutted.

It just shows how quickly your status post tx can change really. And it's scary

There's so much you have to do to monitor yourself post tx. Check your temp everyday, check your PFTs everyday. If there's 10% decrease in function over a course of 2 days it could mean rejection, infection, or that you're going straight to hell, and you must ring up your coordinator immediately and get sorted out. Because if you don't, you might just die.

Really.

That's scary. And i'm scared that I won't know how to identify these things if they happen to me. I'm afraid if it ever happens that it will happen gradually like when i first got sick, and that i won't even notice it.

Nothing is certain in this post-tx realm. The highs are high, and the lows are low.

And I am scared.

There is so much that I am afraid of. I want to live big, but I don't know how. I don't know how to branch out and do it since i lived in a cage for so long and had to back out and bow down. I know it takes time...and hopefully in time, I can be crazy again without being afraid. Afraid of what? I dunno...Maybe i'm just childish.

Maybe i don't know myself...

But I do....I just need to step up, say fuck it all, and be proactive.

But it takes time.

And I am scared.

(and my dog died a week ago:()

Transplant Friendship

2010-05-12T21:17:00.003-04:00

Is different than normal healthy people friendship.

Transplant friendship is...
being able to talk about your fears
of living
dying
sad thoughts
weight
meds
doctors

Celebrating small things...
like taking 8 pills at one time
prednisone doses going down
Controlling yourself in the presence of food
running up the stairs
shitting everyday
No more nebulizers

Transplant friendship is...
Talking about FEV1 and FVC and PFTs and ABGs
and knowing what they mean
Getting blood once a month is thought of as few and far between
Talking about vomitting, and exhaustion, and lung function
As if it were something everyone talks about

Transplant friendship is...
Being able to celebrate and discuss mucus
the colour
and taste
the feel
and not be grossed out
Being able to talk about peeing and having the shits
and celebrating instead of being turned off

Transplant friendship is...
evaluating your surroundings
routing out the fuckheads
the people who only want to be your friend when it's convenient for them
or who want things from you
It's valuing the friends you have
because you know
you KNOW
that all it takes
is one little thing
and poof
they are gone
vanished
forever

Transplant friendship has...
taught me a whole new normal
has taught me to love life and all the little things
to not judge an outer shell on its appearance
because underneath
you never know
could just be a rockstar

Transplant friendship has...
given me humility
humbleness
strength
passion
love

I am thankful to be a transplant recipient, friend, and survivor. It has made me who I am.

Unconventional Sunday

2010-05-09T22:40:00.007-04:00

I've decided to stay up late tonight

because i am alive

because I can

because I can breathe

Even though i have a job interveiw at 10:30 in the morning

And i need to shower before hand

And shave my legs

Which takes forever

because i like long showers

But it doesn't matter

BECAUSE I CAN BREATHE

No more shortness of breath

Nothing leaves me breathless

But I don't forget what it's like

Excitment coursing through my veins

For the next day to come

Big hair

Big make-up

for no reason other than

to celebrate the fact that I AM ALIVE

LOVE LOVE LOVE staying up late

and waking up early

No nebs to take away my morning hours

no puffers to open my airways

No oxygen to keep me going

No hours spent clearing my chest

of the relentless shit that drowns my lungs

No hours spent coughing the shit up

Only to have it quickly fill back up

Even if my tummy hurts

From days without having tummy meds

Even if i want to puke, puke, puke all over the place

I have Freedom
Just freedom

Freedom to get up and go

To flee

Hurry up

Live

Be late

Smile

Because I am alive

Off to my old rehab tomorrow to visit the peeps and see Carol and discuss participating in the Canadian Tx Games which are in August! Only have till May 15th to sign up so must must make up my mind! Mum says 'what about work?' I say, 'you only live once. what is 1 week off of work?'

Weeeeeeeeeeeeeeeeeee!

Woke up today and spent the day in my jammies on the couch with lots of tea on hand. I essentially was a sloth and did nothing.

Can't wait to crawl into bed and not have to change into jammies. I am disgusting.

9 months

2010-05-08T00:35:00.005-04:00

Well today (ok, yesterday) was my 9 months post tx! How exciting! And how did i celebrate?

Well...on the couch all day contemplating a house that had 1 less dog in it.

I woke up and laid in bed for a good hour and a half thinking about Casey. I was fine. I told myself to haul ass and get out of bed and be productive to take my mind off the fact that he isn't here anymore.

So i got out of bed, and i washed my face, and i got dressed, and i walked down the stairs...

And then i lost it.

My special little boy isn't here anymore. He wasn't at the fireplace, or at the front door, or in the family room by the couch sleeping, and he wasn't in front of the washer and dryer.

He is gone. Dead. Vanished. Forever. And all we will have of him are his ashes in an ugly cement urn and a paw print.

I will tell you about putting him down, because i feel it was anything but peaceful. It took the vet (who was a total sweetheart in all honesty) 2 tries. She had trouble getting his vein and she blew it and he shot up from his laying position. It broke my heart.

"This is it," she said.

She started the injection.

And Casey shot up.

One needle wasn't enough.

It took 2 injections for him to go. And when he went he twitched in my lap.

"What the hell is this?!" i yelled.

And then his eyes flew open.

Muscle reflexes. Horrible memories for me. Trauma. My poor dog. I honestly beleive that he was so sick that he didn't care. But still: HOLY FUCK.

UUUUUUUUUUUUUUUUGH. FUCK.

I kept replaying this in my head all day, and I wish i could forget. I occupied myself by cleaning the entire main floor of the house - dusting, vaccuming, cleaned the counter off and it looks fabulous. Did some laundry. Got some GORGEOUS flowers from a friend in condolensce for our loss.

I felt good all day. Emotionally better because I know Casey is in a better place where he's not in pain and he knows that we all love him and miss him.

Mum, dad and I broached the topic of getting a puppy. So soon, I know, but we've been thinking about it since before Casey got sick. Honestly, for me, i'm for it and the sooner the better. Sure, we have the girls (the Spawn and Madyson), but they're my mum's dogs. Casey was mine and my dad's. We all love the girls and they love us, but it's not the same. Casey was a big silly fur ball and when he hugged you he hugged with all of his silly self and you felt it resonate through his thick, homeless-looking coating of fur. I feel it with the girls but its different - not mine. It makes me sad. You can only squeeze and maul a cat before it screams and runs away.

The Heidi Speidi was supposed to spend the night warmly ensconsed in my room for a girls night but she found her way off my bed and shot down the stairs. She's been comforting me which is sweet. Lots of extra snuggles and kisses.

Zoey has been in her lair contemplating her contempt for the world.

Here's proof from yesterday, when I told her to look at Casey because he was sick and didn't have much time left. She just stared and shot lazers from her eyes. The cat has no soul.

Onto other things.

I'm out of stomach meds, because the stupid pharmacy is on a back order for Miraxicam or w/e the hell it's called, so my stomach frigging hurts and i feel like i need to take a big shit and can't. At my assessment Mon (which went well), they upped my dose from 1 pill 4x a day to 2 pills 4x a day, and when i brought the script in Weds night they said they'd have them the next day. Which was fine, because i had enough...

And then I ran out. So i went to the pharmacy to pick it up (thinking it would be ready) and the foreign lady informs me they are back ordered and can't get ahold of my co-ordinator to see if they can put me on something else.

They never heard back. So it's been 2 days without stomach meds and i have no appetite because my food just sits there. Blah.

What i wouldn't give for a huge fart.

And my dog back.

Casey: My Silly Little Boy

2010-05-06T21:34:00.006-04:00

We had to put Casey down tonight:( He was 14. The last few weeks he hasn't been eating right and finally last week things turned for the worse. Dad and i took him to the vet on Monday and they drew blood, and we got the results back Tues with elevated kidney and pancreas levels. On top of this, he is blind and deaf and has arthritis.

He stopped eating 2 days ago.

It's kind of like he knew - he was just ready to go. Here are some pics I took of us today - our last day together as best buddies.

Casey: i was here when you crawled into this world, and I was there when you crawled out. You had your head in my lap and I got to hug you as much as possible and tell you that I loved you. Dad was there too.

I will love you forever, and I will miss you for always.

Casey Patrick C, March 17, 1996-May 6, 2010.

Love love love.

In the cemetary/Confessions

2010-04-29T16:23:00.003-04:00

2 years ago today I was listed.

1 year ago today we got rid of the Red Rocket.

And today, I am alive, no longer on the list, nothing.

In celebration I took the Spawn for a walk in the cemetary. I know that sounds morbid but it's just so peaceful, there no children there for her to lunge at, and it's just...beautiful.

We parked near Karyn and took off from there. It gave me time to think and reflect on the last 2 years. Being listed wasn't necessarily a bad thing as it was the only ticket i had out of my old life. Without it, i'd probably be dead by now. I'd still be struggling for every little thing. But now? Now i can breathe easy and nothing stops me.

I thought about my donor and got teary eyed as usual.

And then i tackled the revelation that i can't have kids.

I've thought about it a lot, but whether i've actually thought indepth enough for me to get upset about it, i don't know. To be honest, i'm pretty ok with it. I've never wanted kids really, and that could explain my general lack of affection for all things children. They scream, they cry, they smell, they shit themselves and projectile vomit all over things. They destroy stuff. They take away 'me' time. And i'm too selfish to have that snatched away from me. But this doesn't mean i all-out hate children, i don't, i like a few of them, just not all.

If we're being honest, i always saw myself as the 'cool aunt' in life, the chick who has a lot of money and is always travelling. BUT. I've thought of adopting too. It's a huge responsibility.

So yeah. Part of me doesn't care, part of me is deeply upset, and part of me is relieved.

Maybe the conculsion is this: I am a horrible, selfish person.

That doesn't suprise me.

Um. I can't think of what else to post. Sorry if this is boring.

Before and After

2010-04-28T12:39:00.002-04:00

For those who don't have me on facebook, here is a before and after pic of yours truely.

Before: taken at the hosp while waiting to hear that my transplant was a go. It's about 5:30 in the morning. If you ever wondered what dying looks like, here you go!

After, taken the day i actually got fired. Maybe I knew and that's why i'm so happy. Anywho, this is yours truely 8 months post tx! Weeeeeeeeeeee!

Evil Kitteh

2010-04-27T23:27:00.002-04:00

My precious child, Zoey

http://www.evilhumor.com/media/files7/pictures/how_to_tell_if_your_cat_is_plotting_to_kill_you.gif

*enter Twilight Zone music here*

Now run.

A Bookwhoring we will (try to) go

2010-04-23T19:55:00.002-04:00

This post is written from an extremely pissed off point of view. Why? Because my exicted attempt at bookwhoring was visciously thwarted by Chapters (and my backup, Shoppers Drugmart).

*wipes tear soaked eyes*

*catches breath*

*places hand on bossom*

*insert lip quiver here*

They did not, ah *wipes eyes*. They didn't have the books I was looking for. Neither did Shoppers Drugmart, who can usually be relied on to carry smutty material. But no. Both failed to enlighten me and I have come home emptyhanded and disheartened.

I even stuffed my face with an extra chocolate chip stuffed cookie on my flee out the door in anticipation of a night draped on the couch reading said smut. And no! It's been thwarted! And ruined! All in the name of some viscious establishment who claims that the 'item is not in store'.

*throws self dramatically on floor*

I love Chapters. And i take back my statement that it is a 'viscious establishment', and there is still hope that i can some how get my greedy little hands on these books if i go downtown to the used bookstore and tame my impatientness and actually take the time to look for them.

The books I am looking for are Outlander-esque, but on the smutty side b/c i am finding it hard to really get into anything. I know, I know i had severe withdrawl 2 summers ago upon completing the series and i do harbour small fears that this could be a revival of it but i doubt it. I just miss novels with passion!

Anywho, the books i am looking for are Kilgannon by Kathleen Givens and The Pride of the Lions by Marsha Canham. Are there any other books similar to them? Why Chapters doesn't have them I don't know, but it really effing sucks and it ruined my night completely. I even parked in a frigging handicapped spot and coughed all over the goddamn place to make it convincing.

Jesus fuck.

Anywho. Onto other things.

I got my palm read yesterday, and I read the palm reader and her daughter in return. Things I was told:

1) I will be packing my bags. I said "my trip!" and she said, "no, you will be moving, and it will do you a world of good"

2) She said i will be getting a job soon

3) I need to get out of my funk and be happy and let go of the past. Some days i find it hard to get out of bed because i can't let things go.

4) I have had a lot of physical trauma. True.

5) I hold a lot of tension in my stomach. This is true.

6) My blood is toxic. Also true. I have a blood disease.

7) I will meet 'the one' in 3 years, and he will be older than me, and not what i'm looking for.

8) I can't have kids. This is something i always speculated but my doctors always told me wasn't true. I've asked them if i can have kids and they told me yes. My parents confirmed it by telling me, no, you cannot, because of medication i was on as a baby. TRUST YOUR GUT PEOPLE.

9) Me and 'the one' will adopt twins.

10) She asked me if i was adopted. I said no. Then i told her about my transplant, and we concluded the lines she sees are my donor. I always speculated that my donor had no family, which is why i never heard back from 'them' when i wrote. I've had a tremendous feeling of sadness sometimes post-tx. She said my donor was either adopted or in foster care. I remember the doctor telling me that 'this person knew what they were doing' by signing their organ donor card, and i remember thinking that they were alone and had no family. I hope that through me - though we never met - that they can find solace and a home.

Um i think that's it? I should've asked about school. She told me to come back in 6 months to see if my other lines develop, so i will.

And that is that. I'm off to go sulk.

Weeeeeeeeeeee!!!!!!!!!!!!!!!!!!!!!!!!!!!!

2010-04-20T19:47:00.004-04:00

I'm going to see a Tarot card reader on Thursday with my friend Andre - but not for a reading. She wants ME to read HER.

Yes. ME reading HER, the TAROT CARD READER.

Word of my spidey senses have spread through my friends, and Andre's friends mother is a tarot card reader and heard about me and is really excited to meet me. As I am her. I won't be reading tarot cards, as i don't know how, i will just read her point blank as i do people. It's called claircognizance for you ignorant bastards who know nothing about spidey senses. Well now you do. I'm claircognizant, and i'm wicked stoked about Thurs.

Will let you know how it goes.

Other than that, things are fab and i remain on the job hunt as per usual...

Be careful what you wish for

2010-04-16T12:33:00.003-04:00

My how things change.

Just a few days ago i was saving up to go on my massive trip with Eve, and complaining about (within myself) how i hated my shift and how i sometimes longed for my pre-tx life when i had all the time in the world, when out from under me i lost my job.

Yup.

Shock and awe.

It's not that I suck as a worker, because apparently i'm a great worker and I follow direction well, and whenever I'm told to correct something I do it and make a great effort, it's just that i'm not bubbly enough. As my employment termination papers say, there was a 'lack of organizational fit', which basically means, my personality sucks.

Wooooooooooooooooooooo. Go me. Shitty personality represent.

Yup. I don't know if i should be embarassed, ashamed, shocked, upset, or what. It is funny though, that the entire time I was employed at the TAC i always had this nagging feeling that something about the place was off. Well, when it's your second day there and someone takes you aside and tells you to watch your back because management will do everything for their members and nothing for their employees, that says a lot. When everyone around you is quitting, bitching about how management sucks, and is generally unhappy, you begin to wonder. And I won't lie, i did wonder about what all these people were talking about and was still actively scoping out other jobs while employed. But I was also aware that no job is perfect and there will always be something to bitch about, someone who's soul you hate, someone who hates your soul, someone who thinks you most likely suffer from some form of mental retardation and thus looks down on you and makes it incredibly obvious to one and all, i stuck it out.

So while all around me I was surrounded my miserable pusses, I generally enjoyed the job and found that i liked more people than i hated (and you know me, i fucking hate people). And i found that it was reciprocated. So when I was pulled aside on Tues two hours into my shift and informed that things 'just weren't working out', because, you know, i have a shitty personality and i'm not bubbly enough, is it so wrong that i didn't squeeze out a tear, feel my soul plummet into the floor, see my future burning in flames in the depth of hell and so forth? I don't think so. I think it's telling. I mean, if i was secretly looking for another job, i see it as a blessing in disguise.

And this is what i've determined: I'd rather work for a humble establishment with people who enjoy their jobs and genuinely want to help others, than work for a superficial place where everyone's in it for themselves and wants to make a dollar. When you're surrounded by people who are so blatently miserable it rubs off on you. I'll do 2 part time jobs if i have to, but I am determined to find another job and most importantly, find something i like, and somewhere i fit in. I didn't really fit in at the TAC; i wasn't popular and in the incrowd like most people were. I was the newbie who asked a lot of questions complete with shitty personality. Don't forget that last aspect: my personality sucks.

Whatever.

But despite having the magic carpet ripped out from under my ass, I'm happy. The weather is great, i feel fabulous, i'm applying to jobs and being proactive about it, and my spiritual center remains balanced which makes me happy:)

And i think that's it!

The 3 Stages of Studying - plus one extra

2010-04-10T17:30:00.002-04:00

I've entered into the Studying Phase, of which I've determined has 3 stages plus one extra. I have my final exam on Monday at 8:30am and since beginning studying i've found copious ways to dick around and waste time, many of which include countless facebook status updates about my lack of studying progress. They are as follows:

April 9, 2010, 12:07pm:
on the agenda for today: study, study, study, with lots of tea on hand! Keeping the kettle full to keep me going...

April 9, 2010, 6:01pm:
...and now we enter the final phase of the studying experience: feelings of doom.

April,9, 2010, 11:39pm:
for exams, on a scale of 1 to fucked we are 'fucked'...but not quite in the realm of 'doom' ...which is one notch closer to the realm of 'hope'. at least that's what i'm telling myself

April 10, 2010, 5:38pm:
has entered into the final stage of the studying process: the 'i just don't care anymore' stage, safely surpassing 'hope', 'fucked' and 'doom' all in one svelt swoop. At least i have Doritos for later on when i inform others that i am 'studying' which will make me feel a little bit better and i may just beleive that i have in fact, studied somewhat.

So let me elaborate on these stages shall i, for those who are unaware of what they consist of:

Stage 1--> HOPE:
The first lesson of studying is that there is no hope. We're all fucked and we're all doomed on some plane. But alas, we enter into the realm of studying telling ourselves that we'll accomplish alot, remember our shit, make great notes, and most importantly, that we won't dick around. We will have our snacks, stay off facebook, and tell our friends on MSN to fuck off all because we are 'studying'. This is why stage 1 is entitled 'hope'. It is a fallacy and a lie created by ourselves in order to make ourselves feel better, all the while knowing imminent peril will greet us at some point. Fuck you, 'hope'.

Stage 2--> FUCKED:
We enter into the 'fucked' stage within the first 3-6 hours of studying. Hope can only last for about 6 hours before major emotional upset begins to leak into our system. Soon to follow are feelings of sheer panic, utter failure, ruined futures, and probable death. Your brain tells you that you know nothing, that you will never remember a single thing, and that you should've begun studying ages ago but you listened to the little ego inside of your brain and beleived that waiting a few days would still make everything 'ok'. You had it all mapped out, and now you are fucked.

Stage 3--> DOOM:
Doom. Doom surpasses fucked and is the final stage of the studying process. 'Doom' proceeds 'fucked'. When you enter into the stage of doom your heart speeds up, you become restless and angry and you begin to lash out at all things big and small. You hate your parents, your friends, your pets and especially babies. The world is coming to an end, volcanos are exploding and you feel yourself descending into a black hole of nothingness. You will never remember a single thing and will fuck up on all possible avenues. Welcome to doom: you're beyond fucked.

Stage 4: THE EXTRA STAGE
With 'doom' being the climax of the studying stages, you begin the downward spiral into the extra stage which is the 'i just don't care anymore' stage. Basically, you've given up and you acknowledge the fact that you will probably be ok. You tell yourself that you'll remember what you can while secretly holding fears of failure. The wire around your heart that's slowly squeezing the mortal life out of you (thank you fear!) begins to loosen its grip and you start seeing colours instead of solid black and white. You are no longer tense and you allow yourself more time to dick around and waste your precious minutes. When you sink to the 'i just don't care anymore' stage, you are basically ok.

So there you have it. The 3 Stages of Studying - Plus One Extra. I feel that my obvservations are correct and that the majority of students will sympathize with the conclusions i have drawn.

So that is it for today. I must check facebook, where I remain faithfully logged on in hopes of something coming up to distract me....

Getting excited...

2010-04-04T23:31:00.003-04:00

THIS is what life's about!

http://contiki.com.au/tours/161-ultimate-european-greek-islands

Talking to Evlyn right now on facebook (heart-lung tx, she lives in Australia..went to the Aussie games with Alice while i was recovering from my tx...) annnnnnnnd *drum roll please*

IT LOOKS LIKE WE'RE GONNA DO 45 DAY TOUR OF EUROPE AFTER THE GAMES AND MAYBE 2 WEEKS IN IRELAND IMMEDIATELY AFTER THE GAMES!

It's over a year away, but i'm already SO excited! Thankfully I have over a year to save, but god i'm SOOOOOOOOOOOOOOOO EXCITED!

1) World Tx Games in Sweden
2) Go to Ireland for 2 weeks afterwards
3) Spend 45 days travelling Europe
4) Go home BROKE but with a LIFE TIME of memories with an AWESOME chicky!

I don't think anyone can know how much this means to me...To be able to look ahead and know that i can do this and that lung problems don't hold me back anymore. It's no longer, "when i get my transplant..." or "after my transplant..." now it's, "next year, after the transplant games..." it's FOR SURE!! AHHHHHHHHHH! Obvs we're still talking about it but in my heart i know it's going to happen. And i'm so excited that I probably won't even sleep tonight. I've never been able to travel - ever. And to be able to say that I can and not let medical stuff get in the way? I will worry about the amount of meds to bring with me later, that is not an issue. The issue now is that Eve (Alice, yes?) and I are gonna do this massive trip and have a blast. That is my goal for the next year: to save up, have fun, love life and live it the way a normal 24 year old should. How many people do i know who've globe trotted? TONS. AND NOW I WILL BE ONE OF THEM!

AHHHHHHHHHHHHH SCREAM WITH ME PEOPLE!!!!!!!!!!!!!