More medical crap

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?!

Be careful what you wish for

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!

Technology this...

...technology that.

Are we really so lazy these days that we can't carry books around in our bags and need some contraption created by Amazon to digitally upload books to read? Are our fingers so crippled from fucking around on BlackBerry and Facebook and MSN that we physically can't bring ourselves to flip a damn page anymore and have to resort to merely touching a 'one-touch' button and have some computer chip do it for us? Because that's where it seems the world is going.

I just saw a little news feature on an iBook, where, god forbid people set foot in a book store and roam around whilst looking for desired literature to enjoy...No, lets just go online, upload the book, and only enjoy the 10% of it.

I dunno about you, but maybe I truely am a book whore. Maybe i put too much emphasis on having the physical thing in my hands. I like the feel of books - the weight, the design, the feel of the pages and covers and stuff...I like the smells of new and old books...and I like watching my collection grow!

I think if i had an iBook I would cry, b/c i'd have nothing to show for my sick addiction. There'd be no sense of accomplishment at the end b/c there's nothing to book mark all the pages you've actually read through. It's just touch, touch, touch, you're done. I dunno.

Maybe I have mental issues. Clearly i've put too much thought into the iBook.

Still no mailage from the Wildertimes. I'm beginning to think Canada Post hates my soul. To quote Jenna, "If Canada Post had a crotch to kick..."

Which i aptly came up the rear and replied with, "I'd kick it right in its ambiguous genitalia."

Today will be spent in my new Reading Hole - a lovely tiny couch located away from the kitchen and thus food and all the way over in the living room, where i will promptly melt into the asthetically ancient fabric of the 1980's style couch and into the world of either An Echo in the Bone, Galway Bay, or Dawn on a Distant Shore...

I besmirch thee, Canada Post!

*shakes fist in rage*

GIVE ME MY DAMN POSTAGE! I MAVE MAILABLES ON THE WAY! The friends have already received their exciting arrivals and I have yet to have 1 single shred of excitement to rip open.

*falls on floor and screams*

Jenna broke her silence and admitted to me she mailed something to us lovely ladies last week whilst frollicking up in the Wildnerness. Seeing as she and the Yukon live 4 hours away from the nearest dot of civilization, the letters had to be dropped off while on a trip 'into town'. Katey and Krystal have received theirs; I have not.

I am angry.

I want my mailables, damnitt. I want them now!

Now, i am not too shocked it hasnt arrived yet. Usually my spidey senses clue me in and i'll dream about it and bam, it arrives the next day. But so far, no dreams about postage lovin' fun.

But still!

*strangles mailbox*

Some shit...

This entry doesn't come from the happiest point of view....contrary to the post that preceeds it. I mean i'm happy but i'm annoyed and frustrated, blah.

I'll start with the happy news: since Monday i've been having my 3 months assessment! Monday was the busiest day for: bloods, xray, CT, PFTs, clinic. Tues saw the gastric emptying test, where I had the fortune of consuming a fried egg saturated in radioactive goo and 2 peices of toast, with an added toxic topping of transplant medication to the mix. And today - the final day - saw my 3 months bronchoscopy, which I hope in all honesty, yeilds no rejection or infection!

So far things are good, tho there was some confusion over some cyclosporin levels. Also, the thing that i'm pissed off about, is that bloody gastric emptying test has shown yet again complete and utter failure of my stomach.

Let me break it down for you: you come in at 9am and eat ur radioactive egg. You get an xray. You're told to fuck off and come back in an hour for another xray. Then you fuck off for another hour and come back for another xray, to see how your radioactive friend is moving along. If all is well - meaning the egg has made the journey from stomach to intestine safetly- you're free to go and your stomach is awesome. If you're stomach is a complete tool - like mine apparently - you must come back in 2 hours to see if things have moved along.

In my case, they didn't. They merely crawled along. After 1 hour i still had 90% of the stuff in my stomach. After 2 there was 60%, and after 4 i had 10% left. To be fair, the breakfast they gave me was significantly larger than what i usually have, and all i did was sit on my ass for the whole time literally staring at the sky while i thought the stuff was digesting (and i must state that the egg wasn't bad even though they left out the fun part, the yellow goo). I was asked if i felt full all the time. I kind of lied and said no, b/c it depends on what i eat. But basically, they do this test to see if you have reflux b/c that can cause you to asperate into your lungs which is very very bad.

After 4 boring hours i was released and sent to skip on my merry way home. I thought all was fine but allegedly it wasn't. The egg was still festering away in my stupid crippled stomach. I got a call from my tx co-ordinator today saying i had delayed gastric emptying and that I must go on another med to help things move along. I was pissed, though in retrospect I guess I shouldn't be. I won't lie when I confess i was pissed b/c I was worried that starting such medication would yeild terrifying results: fatness. Yup, I said it. But i've realized if things move along faster than just sitting like a dormant volcano in my stomach then it probably won't happen. So we'll see.

Todays bronch was well. No vomitting or hallucinations. I did have to put the bronch to a hault right before as i ran to the bathroom for an emergency pee. I felt bad for holding things up but my doc was happy to see me running. The unfortunate part came afterwards in recovery when I was placed between two men who had just had colonoscopies. I've never been near anyone after they had one but i learned that after one is done, the patient is encouraged to fart as much as possible. They must lay on their sides and force it out - big and strong - before they can go home So there I was, coughing up blood (it always happens) while these 2 men tried to fart as much as humanly possible. At one point, me still being mildy sedated and not being held accountable for my actions or words, the guy next to me let out the grossest, loudest, wettest fart in my direction that i had ever heard, that I spoke up and said to him, " You better check that you didn't shit yourself".

I didn't look at him when I said it, i merely stared wide-eyed at the ceiling in utter disgust, in hopes that any smell didn't waft in my direction. I just wanted to get out of there and not fall victim to fart fumes.

What else? I feel like i need to get shit together, like i'm extremely unorganized. Now that i'm done with pulm. rehab I need to work out more. Granted, this week it's been harder b/c of my 3 months assessment, but i'm not about to let myself melt into a blob of goo. Must join a gym and/or walk more.

I don't think there's anything else for me to bitch about. If there is, you'll hear about it.

Freeze Burn

Liquid oxygen is stored at -400*C. If it touches your bare skin, it burns it. It doesn't burn the way a hot burn does, when it burns you, it stings and turns white. Needless to say, I was slightly shocked when my finger touched the nozel on my big tank in the garage this aft when i went to fill my portable, and I felt a sizzling sensation in my digit. I took it away to see a white blister like thing, and resisted the urge to stop and cry like a child on the spot. In all honestly, it hurt, but not too horribly. Still, it was enough to make me post about it.

90's party was a blast. Everyone loved my denim pant suit and crimped hair. It took us 2 hours to crimp our hair, and I can honestly say that i sustained a hand injury like no other whilst in the hair crimping process. It hurts to grip things, but it could be worse. I felt utterly terrible all weekend, but for that small span of time at Chantel's party, i managed to shove it from my mind and enjoy myself.

Here's a pic of my get up - a denin pant suit. The pose is inspired by Sears circa early 1990's:

You'll notice that my face is flushed. Full credit can be given to Jenna and her generous dollup of rum to my coke. She put so much in it that it was practically glowing and alas, my face was set on fire.

There are more pics i could put up but i'm too lazy to. There'a lot that i want to talk about but I am to lazy to, as well.

Since Oct. 22, I have lost 2 tx friend. One pre (tonight, at 6pm) and one post, on the 22nd of Oct. Shocking is the best word to describe it. I hate the way the world works when suddenly the death card is shoved in your face. You never think your friends are gonna die - no matter how close you are to them. The fact that they were both young sucks even more. I hate that it challenges everything I know and feel. I can only hope and pray for them that they are both in a better place where this shit doesn't happen.

Crystal -I will always remember the story of when you got The Call, and how your dad made you leave your Care Bear in the car for your assessment. For some reason, both of those have always stayed in my mind and I wonder if when i get the call, will they tell me to hold tight, call my family, and call me back??? I will never forget that you had an inkling that the call was coming either....and I will never forget the shock i felt when i found out that you had passed away. It's unbeleivable and I'm sad to say I never got to tell you how much you have helped me through this transplant business. You ARE missed.

Kyle - Oh Kyle, I don't even know what to say...this is such a shock and a loss. I've been praying for you everyday since you got listed, and I've been praying harder since the day you went into the hosp. You words of encouragment to me never went unfelt, as I hope my words of encouragement to you never went unfelt as well. We so looked forward to finally being able to meet in person after we both had our transplants at TGH, and I'm so sad to know that now that won't happen. I can only pray for you and your family now, that you're in a truely better place where everything is better. You ARE missed.