Noooooo!!!!!!!!!!!

I'VE BEEN PUT ON PREDNISONE!!!!!!!!!!!!!!

*stops, drops, and rolls*

*cries*

*throws small child out window*

*kind of feels better*

I know, I know, this isn't the end of the world. Shut the fuck up, already.

Not only that, I WAS ALSO THREATENED TO BE THROWN IN THE HOSPITAL.

Gah. So this is how it's gonna work: I am going on prednisone for 10 days. First 5 days, I take 30mg a day (6, 5mg tablets), and after 5 days, I go down to 15mg a day (3, 5mg tablets). I made for extra certain sure this is how it would work. I looked at the horrible prescription and through my feeling of terribleness i looked my doctor straight in the eye sand asked, "this isn't gonna make me fat, is it?". She said no. I told her I was on it 6 years ago and gained 10lbs in 6 days. She said that was a lot, and that I probably had a huge appetite boost with it. I basically took that as this time trying to air on the side of self-control and not make a spectacle of myself.

HOWEVER, if by this weekend I am not feeling better, she is working in the hosp and I am to ring her up and get admitted. There I will be given arosol treatments, chest physio (where they bring a stupid person in to beat you, which i'm against in every way shape and form) and maybe IV antibiotics. She's not sure what's up, but she thinks the asperguillis could be the culprit and that there is a lot of inflammation.

So boo. My spidey senses were absolutely right.

I got to my car and sat inside. I had the windows down b/c the new car smell is realy overpowering...almost like markers. I tried to think of ways to boycott prednisone, though i know i shouldn't. I couldn't help but notice that I had laid the prescription on the passengers seat, and that the window was open, making things blow....

Maybe it will fly out the window... But no, I stopped myself before my hand could execute the murder of my predinsone prescription, and alas, it still sits in my car waiting to be dropped off. I'll get to it later today, for now I'm just eating a giant bowl of frootloops....Enjoying them before the prednisone sets in. I hope to god it doesn't turn me into a monster.

I'm such a horrible, superficial person sometimes. BUT, i realize, as fearful as I am of pred, maybe this time won't be that bad, since i'm extra wary of all the horrible things that could happen to me. And at least this isn't perminent...I'll learn some self-control, and i'll learn anger management too, most likely.

I will keep you all updated!

In other news, we got rid of the Red Rocket yesterday. The Red Rocket: July 21, 1994- April 29, 2009. Dad and I got some final pics on the way to the dealer. It was really nostalgic for us both; though we've known for eons the car had to go, it's helped us through a lot. In true Tempo form, as we pulled out of the driveway, the orange Low Fuel light came on. I got a picture of it. And i also got a picture of my final scold in the Tempo. Upon waiting at a red light, i stuck my arm out the window to get a pic with me and my dad. My dad, being a dad, said, "You better not drop that. Put the string around your wrist". I got a pic of that too, it's really close up.

I think the saddest part was when we arrived at the dealership and got out of the Tempo for one last time. I stepped out, and shut the door, and that's when i heard it.

Groaning.

The Tempo was groaning. It wasn't just, the groaning that happens when the brakes settle, this went on for about 5 minutes. My dad got out of the drivers side and said, "OMG! It's groaning! It knows! It doesn't want us to go!" In a bizarre, sick way, it was kind of sad.....like a dying infant animal giving a final wail for help as the parents turn around to leave, b/c they know they cannot save it, for if they stick around to watch it die, they put themselves in danger.....The Red Rocket was very much screaming out to us, "NO! DON'T LEAVE ME!"

*heart breaks*

That was deep.

Speaking of deep, I went to my respiralogists office today with an 'opening' of what i'd say to her to get across how bad i feel. I won't lie when i say this came to me sitting on the toilet last night.

"I thought I felt terrible before, but this is different; this is misery."

Nice eh? Needless to say I contemplated saying it....but chickened out when she uttered "hospital". I had no doubt it would be suggested, it's just scary when you hear it said allowed. It's kind of like shouting "TORNADO!"

That is all.

A Monumental Day; The End of an Era

Well here I am, one year later, still waiting on the transplant list, still no further along than i was a year ago.

Or maybe I am.

In other ways, today is a monumental day. Not only have I been on the tx list a whole year, and am hopefully closer to transplant rather than farther away from it, today is also the last day my dad and i have with the Red Rocket. Yes yes, we are trading it in at 5pm tonight for the new Elantra. Bittersweet. Exciting. Sadness. All rolled into one giant emotion presenting itself in the form of denial.

I may write later on my feelings with regards to the Tempo...but for now, it's too sad.

Today is a gorgeous day, and I would go outside to enjoy it, but unfortunately, my pupils are horrendously dilated from my eye appt that i had this morning, and I can’t go into direct light b/c it burns, so i’m living like a vampire and staying inside. I still feel like shit, and tomorrow is my respirology appt so we’ll see how that goes. So over all, it’s eventful.

Also, my book is coming in the mail! YAY! I checked the status of it and it says “item out for delivery” so i can only assume that it will be in my mailbox soon! WEEEEEEEEEEEE!!!!!!!!

That’s really I can think of that’s worthy of blogging. If more happens, I shall update. Oh yes, my elbow bruised massively and is still growing darker so...It’s not as lumpy as it was, but it still hurts.

Hey, at least the pain lets me know i’m 'healthy' enough to feel it!

I’m gonna go have another coke, eat a whole bag of popcorn, and read my Mary Queen of Scots book. Her and Darnley are about to get married – the joy!!!!!!!!!!!

Fuck my enthusiasm over a 450 year old marriage that ended in terror or sadness!!!!!!!

*skips in a circle*

*and coughs*

Another Dignifying Experience

*This Dignifying Experience has been brought to you by Shame and Embarassment, and a little bit of Humbleness*

I had a shower lastnight, one of those showers where you feel so sick and tired and - ugh - that you go slow like a turtle. I managed to wash my face and body standing up, but when it came to my hair i had to forfeit and succumb to washing my hair by sitting on the bathtub floor.

Yeah, it was special. While people my age are graduating university, going to parties and having fun, i was sitting on the bathtub floor, trying to catch my breath, and telling myself that it really wasn't that bad; that it wouldn't be like this forever.

So i turned around. I turned around so that I was on the opposite end of the tub, facing the faucet, the drain, and the shower head rained down on me. And i decided to look at the positive in my situation.

For one, from my vantage point on the tub floor, the shower curtain gave off a yellow hue to the tiles and suddenly, i felt like a Beetle in a yellow submarine. Not many people can say they've experienced that, can they? Nope, they can't.

I looked over myself and decided to appreciate what i have. Well, I have 2 bruises on my legs instead of 4, both of which are fading nicely (until i go and kick or bang myself again). I have half a roll in my stomach instead of a whole one, and i was slouching so it's probably not that bad when I sit. My feet were violet: not all-out purple.

My manicure looked great in the shower, and i smelled nice b/c of my body wash. Though my stomach is incredibly white, at least there aren't any sun damage marks to it. I have half a sunburn on my left shoulder from driving yesterday but it's not so bad and it doesn't hurt.

And best of all, when I got out of the shower, though I was exhausted, depleted, and sad, it was still sunny outside...the kind of sunset that you see at the end of the day when you're up at the cottage, where you reflect on what you did and you get to snuggle into warm sweaters and sweatpants by a bon fire and relish the fact that at some point, everything will be ok. So that's what I did.

I am feeling a little better today. I made some muffins. I waited for dad to come home at lunch from work, but he never did so i called him and asked. He's not coming home and asked how i felt. I said a little better. He asked if i was going to physio and i stayed silent. He told me it's best if i take it easy so it's been deiced that we are not going, and i'm thrilled.

Next up, i have to get blood taken today. Still really out of breath but at least i can stay in the city today!!

**UPDATE**

Never underestimate the power of a needle the width of an ice pick. Aside from ABGs, today's needle was the most painful thing ever. Aptly stabbed on the inside of my elbow (closest corner to the body to be precise), the needle went in fine. As my vein slowed down in its generosity began to fail, the pain set in. Pain so sudden and horrendous i was tempted to squeeze out a tear.

Now, a mere hour later, i hurts to extend my arm, and i was shocked upon my arrival home, when i rolled up my sleeve painfully, to see the tape had ripped off and the cotten was soaked with blood...and underneath, resided a nasty, painful lump.

A lump so big in proportions that it extends to a region i don't think the needle itself ventured to. A lump so big it looks like a space ship that may take off

The only thing that will make me feel better, and like justice has been served to showcase the painfulness of this, is if i get a big, nasty, grotesque, horrific, lumpy bruise. And that my friends, is shaping up to being likely.

This furthers my reasons for being lazy...since i cannot walk far w/o gasping, i can no longer extend my arm due to the massive lump in my elbow.

Mattress dancing

Another hot and humid day is engulfing southern Ontario, and as you can imagine i still feel like shit. Like a diligent little child, as soon as todays' festivities were completed i came home and called my co-ordinator and all is sorted out. It wasn't as scary as i had envisioned it to be: she was really nice and sounded concerned, and told me to go ahead and make an appt. with my local respirologist since i could get in faster. As a result i see her Thurs at lunch so we'll see how that goes. No threats of hospitalization were uttered but i'm sure the idea will be tossed around. I wont' object if i'm told i need to go in.

I still feel like total and utter shit. I'm still having trouble breathing and moving and such, and i told my co-ordinator that. Today was the final day of helping Krystal move to Jenna's and i just pretty much drove and opened the trunk. Even that left me out of breath.

Mattress moving was a success! Despite the raging 60km winds, we strapped the mattress down times infinity, and made it to Jenna's without incident. We got lots of pics and once i hope onto the crap acer i'll slowly and tediously upload them. I can honestly say that the left side of my body is most likely sunburnt as well, but what can you do? I love these girls and any memory that can be made with them (mattress shifting, half a sunburn) is worth it:)

Next time, i think Jenna and i will refrain from dressing up; i'll refrain from wearing heels and Jenna will refrain from wearing a skirt that causes several Marilyn Monroe incidents.

What else? I ORDERED A BOOK AND IT SHOULD COME IN THE MAIL WITHINT 2-4 DAYS. Oh the excitement!

Today I met for lunch with the ultra amazing, always lovely, Deb! I had a blast and it was great to catch up:)

So overall, despite feeling like shit, i had a good day:) For now, I am instructed to sit on the couch like a Queen and order everyone around. That sounds doable.

The Red Rocket's Final Rescue Mission

Well today is Sunday. I woke up 100% sure that I felt better: the tightness in the middle of my chest had disappeared; the pain was gone, so I felt like, “Yay! It was just the humidity!”

And then I moved.

I had a massive headache. I felt like I had been sledged in the back of the head with a mallet. The Roving Headache that moves when you did. But other than that, I thought I was better.

I went downstairs and was able to move without getting out of breath every time I did so. I had breakfast (3 pieces of glorious bacon, 2 boiled eggs, 2 pieces of toast, a coke, a large tea – yes, at coke at 11:30am).

And then I got dressed, and that’s when my body started failing me. I got dressed and after getting dressed everything left me breathless. I’m thinking it wasn’t just the humidity: I’m thinking it’s me getting worse. I’m thinking it’s Bronchiectasis taking over and mounting it’s Flag of Illness on the inside, announcing to one and all that it has officially taken over.

I helped Krystal move her stuff to Jenna’s today. Don’t worry people I was just the chauffer. All I did was provide the Red Rocket on it’s final rescue mission and drive it back and forth from Krystal to Jenna’s, and give examples as to how if you shove the passenger seat up, you may be able to fit your wicker shelf in, or roll down the childproof windows half way to get said shelf in enough to be able to fully close the back door. But even getting out of the drivers seat, and walking to the trunk to open it up (since apparently there’s no button inside to do it) was enough to make me sit down to catch my breath.

It’s scary.

So tomorrow I am definitely calling my co-ordinator and telling her that I feel horrendous. It’s not just the humidity. I will call her after I go out for lunch, and finish moving Krystal’s mattress and deformed desk…which I hope we’re able to strap to the roof with bungee cords….

My parents still know that I feel a bit better but still terrible. My dad told me he was worried, and I think he still is, but I’m proud of myself for being honest with them. I literally and physically cannot hide it anymore.

I will let you know more tomorrow.

Listen to the rain

Today was hot and humid, and as a result, we had a massive thunderstorm/tornado/windstorm/torrential downpour that had tree branches littering the streets, rain blowing sideways, and people flying through the air. It was incredibly exciting and scary, as the girls and I were downtown in the Red Rocket when it started up. One minute the sky was black and the next minute it was swirly and there was lighting and thunder and wind, oh my! I can say, that the Red Rocket took it like a champ and there is no damage to it, which is good b/c....

WE'RE GETTING A NEW CAR ON WEDS!

Yes you read that right. The Red Rocket - dearly beloved, decrepit - Red Rocket, is on her way out. I am both torn and excited. We've known for a while that her time was up (hello, we've had her almost 19 years), and it's come unexpectedly, BUT, i'd rather it be unexpected than planned.

So Weds at 5pm dad and i go to the dealership to pick up the new car (Hyundai Elantra sedan), aptly named Cherry Bomber (thanks Ash!), so it's exciting. Pics galore will be taken and i will try my best to post some (yes, rust in the back seat included). Tomorrow will most likely be the last excersion with the girls in the Red Rocket, so they will have sufficent time to say goodbye and get final pics. The Red Rocket will be missed, as she has been a part of many-a-memories! Tomorrow the Red Rocket will be employed on its last mission of helping Krystal move out of her cupboard and in with Jenna. YAY!

In other news: i feel like utter shit. Physically, the lungs are not doing well at all, and it's hard for me to determine if it's b/c they're just getting worse b/c they're bastards, or if it's a combo of the humidty and the tobi or what? What bothers me is that today wasn't even that humid - not by usual southern Ontario standards. Anyone who lives here during the spring and summer can attest to the fact that it gets rediculously humid here, and today was pretty timid. What will i feel like when humidex values are in the 40's??

Needless to say, I cannot move. Any bit of movement leaves me so out of breath and gasping. I can't take even the smallest 'deep' breath in; it's pretty rediculous. As a result, today i was impatient and bitchy and had a lot of road rage when i was out.

When the humidity broke and the storm came, i didn't feel any better. Evidentally, some spells cannot be broken. I have pain in the middle of my chest when i cough, so i don't know if i'm getting sick again or what, but i'm certainly more phlegmy feeling. What can you do though? Also, i think pleurisy may be firing itself up again, but only time will tell.

So you can see, it's been a bundle of fun. Currently I'm in my room with all the lights off (but one), and i've got The Tudors season 1 on, the window wide open, listening to the rain outside. My O2 is on, and I'm nebbing, and you'll be proud people, I TOLD MY PARENTS HOW SHITTY I FEEL.

I was honest. I told my dad that i felt so bad i didn't want to move; that any little movement was a massive effort, and that if i still feel like this monday that i am calling my tx coordinator and arranging to see my respirologist that's close to me. If they want to incarcerate me to the hosp, I will willingly go. That is how bad I feel. I just don't care: all i know is that i cannot deal with feeling like on my own. It is too much.

Other than that, mentally, i am feeling a lot happier which is good. I hope you're all well and enjoying your weekend wherever you are.

I don't know why i keep thinking it's Sunday?

The Waiting Game

WAITING

Wait-ing
- Noun
1) A period of waiting; a pause, interval, or delay

Wait [weyt]
-verb (used without object)

1) to remain inactive or in a state of repose, as until something expected happens (often fol. by for, till, or until): to wait for lungs to come

2) (of things) to be available or in readiness: Your life is waiting for you.

3) to remain neglected for a time: you're not that important yet; you can continue to wait, aka HOLD THE FUCK ON

4) to postpone or delay something or to be postponed or delayed: We waited a year and then realized we were still fucked. Your summer may still possibly be ruined.

5) to look forward to eagerly: I'm just waiting for the day when i can get my life back and stop fucking waiting!

So you can see people, those are just a handle of examples that accompany the term 'wait', all of which are true, all of which are felt, all of which follow me everywhere I go, and everything I do.

I AM ALWAYS WAITING.

If i am not waiting for lungs, then I am waiting for a phone call, or a text, or a something. I am waiting for plans to be made and excitement to happen. I am waiting for someone to take a shit, or have a shower, or wake up. I am waiting for someone to decide what to eat for supper, and I am waiting for the next day to come.

Is life but a waiting game?

I know I should focus on what i can control rather than what I can't, but sometimes, the negative aspects outnumber the positive. I find that lately i am more prone to fall into the 'everything sucks' aspect of waiting instead of looking to the positive. This is why i should not be allowed to think, b/c i overthink. And that is a horrible Virgo trait that cripples me severely.

I honestly beleive that after all these shananigans, the mass of waiting will simmer down. Honestly - of that I am sure 100%. But of all the impatient people for waiting to find, it bound itself to me. I can be a patient person when I have to be, but sometimes it sits on your brain like an egg in the sun, and eventually it burns into the tissue and everything goes to mush.

Mush i say!

Whoever invented waiting had a lot of time on their hands.

So boo negativity, hello positive thinking:

"Good things come to those who wait" so i will suck it up, smile, and beleive with certainty that they will:)

And for a personal mantra, thought of by me, with a personal twist, is this:

"Life is but a waiting game: if you think about it too much, eventually it will fuck you"

*big effing TRADEMARK*

The New People

Another Composite Article based on Observations made by Me as I live in Patienthood.

Anyone waiting on a transplant list of any sort can attest to my recent observations: The New People. The New People who are so new on the list who don't see you too often, because you've been there so long that you only need to go every other week, that when they see you, and assume that you are new, that they thus know more than you do about the waiting process and proceed to give off asshole vibes.

Has anyone else ever felt that? Or picked up on it? Because i most certainly felt a jolt of hostility from some old new people at rehab today, as i sat in my corner and was catered to by the physio people b/c i'm not supposed to move around the room by myself.

Are you following?

It wasn't just one old new person, but a bunch. People who have been listed maybe 2-3 months, who consider that 'long', and who have never been in the physio room with you before because you go every other week and are rarely there at the same time. The ones who look at you like you're there for the long haul - not realizing that you've actually been waiting almost a year -, yet they proceed to pass judgment b/c that's how they are.

Which is fine, because i chose to blatently ignore all of them today. I made a point to look as miserable as possible, to refuse eye contact with anyone but my people, and i did not smile or talk to anyone but those who i knew. I never waivered from my chair, i never helped anyone...I just shot back those hostile feelings to those who shot them towards me.

So how do i know that these people actually felt this way towards me? I don't, but like i said, it's the feelings....the vibes i got from the people. I probably came across as lazy since i'm not supposed to get up and get my own stuff b/c they don't want me getting cross-infected and blah blah. True, i did strut in the room and command all the attention. I did give off an air of 'fuck all of you new people, especially all of you recently done who waited no time', and i proceeded to shoot electricity from my finger tips if they dared to look at me, thus, jolting them with my awesomeness.

No seriously, i entered the room and stalked to the back, knocking into people and not saying hi or anything. Today, i couldn't be bothered with niceness. There were new people, and these new people thought their shit didn't smell, and i felt like it was up to me to show them what's what in this waiting game.

So cryptic and dramatic!

I didn't see too many interns today, which meant there was no ass-kicking or name taking. I basically ignored everyone today but the people i knew. B/c that's just how i am.

A good conversation starter

*two people sitting in a clinic waiting room, waiting for their appts*

Patient 1: I have a hole in my heart..

Patient 2: I have holes in my lungs. Wanna be friends?

Is that sick? Is that twisted? I think it's pretty funny to be honest. No, this didn't actually happen to me, I just thought of it b/c i'm an evil genius. You have to find humour in this stuff b/c if you don't, it will eat you alive and you will dwell on it. Yesterday when the doctor reiterated to me that my lungs are 'destroyed', and 'full of holes', i didn't feel myself sink into a pit of sadness. I commended her (in my brain)for getting across the actual severity of my disease. It's one thing to know how i feel, and guess how my lungs look, but it's another to see their CT and xray pic and see the crappy results on the other end. To stare in the face of my disease was pretty....weird. My xrays have always looked shitty but this was kind of disgusting. She also told me that lungs most likely are stuck to my ribs and they said they won't know for sure till they 'open [me] up', but that they will 'have the scrapers ready' to scrape them off... So thanks doctor, who i hope is out there looking for a pair of extra small lungs and fighting to bump my status up on the list! Play on, play on!!!

Lastnight I couldn't sleep. I lay in bed, kept awake by the sounds emitting themselves from the rainforest that are my lungs. There were crackles, wheezes, whizzing sounds, and most recently, snapping.

Yup, a lung snap, at the front in my upper right lobe right under my colar bone (where the colar bone meets in the middle!) I didn't need a stethoscope to hear it, i could hear it loud and clearly enough without, and if i put two fingers on the spot i could feel it easily. It felt like snapping; like an airway opening and closing that was full of fluid or something.

And it wouldn't stop.

It kept going.

I tried beating myself (chest physio therapy) to no avail. I tried coughing and failed, so i resorted to getting angry, huffing and puffing and rolling around violently in bed.

And then i coughed, and pop! goes a lung burst. That's what i'm going to call them now: whenever my lungs pop and an airway pops open and creates a hole, it will now and forever be known as a lung burst (yes, inspired by a star burst, thank you). So yup, i listened to the clicking, sticking, poping, snapping, and lung burstings in my lungs and overall, falling asleep was turning out to be a total bitch.

But i slept.

I have physio tomorrow. Another day consisting of waking up at an ungodly hour. Oh well. Debbie told me that I should tell everyone at physio that I have holes in my lungs, to further myself along in our society of ill individuals, so I said that i will wear a sandwich board announcing "I HAVE HOLES" to get across just how important I am. Above and beyond all others *wink*.

Hope you're all well!:)

"Extra small lungs, please!"

There are two words you probably don't want to hear in the same sentence: lungs, and holes.

That is precisely what I heard at clinic today when the doctor showed me my last CT scan and x-ray. Apparently, these holes are in my airways and are the reason why my lungs pop sometimes...something to do with my airways being stretched and swollen and when fluid drains out of them they pop and it's really, really lovely. She told me that the holes in my lungs are everywhere and that it isn't normal and that i have a classic case of bronchiectasis for someone who is IVIG dependent.

*bows*

She addressed the issue of Asperguillis and made a big deal about me being on Sporanox (itraconozole) and asked why i wasn't on another type of it. I told her i didn't know, since i didn't prescribe it to myself, so i really wasn't a help. She mentioned some thing about being on another type of 'conozole' drug, and that's kind of when i stopped listening b/c i didn't understand what she was getting at. All i remember her saying was that the Asperguillis is always there and it has to be supressed, b/c if it is left to flare up it destroys the lungs - as is the case. So...yeah.

She asked me how many grams of IVIG i took. I told her i didn't know (bad, eh?) She proceeded to ask me other fun questions, such as 'how tall are you?' and so forth. She ended the clinic appt by annoucing that she was going out herself to look for a pair of 'extra small lungs' for me, so that's exciting. She is also going to look into getting my status bumped up which is tres exciting, and i found out i am still in the ex-vivo lung study so should lungs come along that are my size but not 'perfect', i have the option of accepting them and having them 'get better' on the ex-vivo machine and whatnot.

Over all it was a good day.

Oh yes, i came super close to telling my dad about my blog. But then i didn't.

AAAAAAAAAAAAAAND: THE INTERNS ARE BACK! (albeit a new batch...and they're back in abundance and crawling like vermin)

http://knol.google.com/k/jerry-nick/bronchiectasis/vaGf8qp1/JDYPZw#

The above link is a good description of Bronchiectasis and describes it, in comparison to normal lungs and such. I warn you that there is an actual pic of a lung, so if you're squeemish or a puss, don't read and or scroll by the pic fast. It also mentions CF and bronchiectasis. As well, it talks about what causes bronchiectasis. Very interesting and much better than the bronchiectasis link i have posted crappily at the side. The link shows comparison diagrams of a normal lung and one with bronchiectasis to help give a better understanding.

God knows I understand myself better now. Thanks random google image search! *cheer*

Thoughts to entertain your mind...

It baffles my mind that I am a person who takes about 10 meds a day, that I'm at the point where just don't make me feel good anymore.


For helping me to breathe along I take:
-Ventolin
-Advair
-Spiriva
-Tobramycin (which i beleive has the opposite effects and alludes to feeling like you're dying rather than getting better)


And for antibiotics I take:
-Septra
-Azthrithromycin
-Tobramycin
- Sporanox
- A shot of tequila
-and most recently finished Cipro, and Levaquin which i'm thinkin didn't do their job, oh well.


So it strikes me as bizarre that I take all these things in order to combat the wrath and horror that is lung disease, and yet they don't work. Or they're starting not to. I dunno, it is hard to explain but anyone in a similar situation can attest to the fact that it is true.


At what point does it all become redudent?


Yeah yeah, shut up all of you i know what you're going to say: "but you have to take them b/c...." blah blah blah. I know that. I take them to 'prevent' me from getting worse, faster. I take them to keep me as i am, to keep the infections from boiling and toiling and taking over. But then this begs the question: why go on more?


Jesus God on his goblet throne, whatever would i've done had i lived in another time?


Um....


Yeah.

Shake shake shake

I have the shakes today.

Probably from my meds which hate me. I kind of feel like i'm having a tiny seizure that's slowly lasting throughout the day. This started happening in Feb, and if you're wondering if i've mentioned it to my doctors, the answer is no. Does this shaking concern me? Kind of. And will I tell them? The answer is still most likely no.

It's mainly in my fingers. I can kind of feel it in my legs but it's more prominent in my fingers than anywhere else. I don't know if another person would be able to see it unless they looked closely at my hands. Who knows? It's just another coin in my bucket of health issues. Play on, play on, let the joust continue...

I went to Canadian Tire with my mum today b/c it's nice out. It's about 20*C so i wore capris and sandles and made an actual effort to look pretty for the world. Pretty, even tho i've got the fucking shakes and i feel like utter shart. You know the weather is getting better when all the dad's get out of the house and whore themselves at Canadian Tire for no real reason. Let's just say it was a real dad fest at ye ole Crap Tire this aft!

We parked close, which was nice, and i didn't walk far, but that still didn't stop me from feeling like i was going to fucking die right then and there from being short of breath. It sucks, b/c it's the kind where you can't take a deep breath in but it's not horrendous, it just takes longer to go away. You feel it in your whole body and then your brain says, "Oh shit. We're going to pass out" and you have to force yourself to stop lest you take one step further and die on the floor of Canadian Tire in the gardening section.

Oh well. Clearly i made it home if i'm blogging. And nebbing. Go me, i've not missed a dose of Tobi yet this cycle! YAY! Today's dose makes it...*checks MSN status* 17 out of 28. HURRAY HURRAY!

What else? Oh yeah, my mum asked me a pretty rediculous question today, as i grabbed tobi from the fridge and left the room. It went like this:

Mum: Are you going upstairs?
Me: No I'm not going upstairs; I'm just ascending the staircase...

People..it's like when you're sleeping and they come in the room and ask if you're sleeping..Oh well.

And thanks to all for your feedback with regards to post-tx food restrictions! I know every center is different so i will get this clarified! Have a great weekend!

Wha...??

I sit here in an utter state of shock. I am reeling and going through a withdrawal of such explosive proportions that I feel the need to share it with everyone now - before i forget.
As i was sitting with Carol today – doing nothing but feeling like i looked busy – she informed me, that she had been informed last week, that post transplant, (or the first year or so) you must firstly have no alcohol (gasp), no herbal tea (shriek) and worst of all, NO POP!

*falls on floor and promptly convulses*

WHAT THE FUCK?! Up until now i have not been informed of any dietary restrictions. Has anyone else had to deal with this? I know it differs from center to center and blah blah, but seriously? Lindsey told me her center told her she couldn’t dye her hair post-tx, or submerge her head in water when she swam. The no swimming dealio is fine by me, since i’m afraid of being eaten by a whale or a shark, but really?

When i got listed i asked if i would have any dietary restrictions. I was told NO. I asked if i ran the risk of developing diabetes. I was told NO. I did not ask if i could resume the lifestyle of a weekend alcoholic and party animal (ha!) nor did i admit to my addiction to coke and pepsi.

It kind of sucks. I don’t think i can function without pop. I’m serious. No alcohol, no herbal tea, that’s fine (wait does earl grey count b/c then we have a problem if it does). I know about the no grapefruit and no runny eggs dealio, but i’m a little irked at the pop.

We shall see. I'll run an inquiry at clinic on Monday. Yup, i go back. We’ll see how it goes. I’m feeling a bit better...i’m getting more heart pains but what else is new. I think Tobi is loosening its grip on me a bit and i can breathe a little easier.

This morning i actually woke up and my lungs were plastered to my chest wall...and not at the bottom like they usually are, they were stuck right at the front under my collar bone. I just lay there, with my hand over my chest, feeling the crackling, the pulling of lung tissue away from my chest wall...it went all the way down my sternum to the point that i didn’t know where it began and where it ended. It was everywhere.

In other news, it’s warm! It’s gonna be something like 19*C today, and i plan on sitting on the deck again today like a pig and reading in the sun. I’ve started my new Mary Queen of Scotland and the Isles book and so far it is tres good.

Hope everyone has a good Friday. After all, it is Friday!

Death Traps, Killings, and Other Ethical Issues Involving the Existence of Spiders

A Compassionate Article by Bree

Tonight I spotted the spider whose been residing in my room since Sunday. After tracking tirelessly all Sunday night and morning with my ultra-efficient spider locator - my flashlight - I believed that the spider had either found its way out of my room or starved to death and hopefully died and obliterated somewhere out of my eye sight.

Feeling confident that I was rid of any spider threats, I took to my room again with my usual frivolity and began to feel more comfortable and not on watch all the time.

Until tonight that is, when I spotted It again, in the last place I saw it: on my popcorn ceiling…just there, doing nothing…Nothing that remotely resembled dying or about to die. I don’t know why, when I shouted at it to leave, and point to the door, why the spider didn’t go. I don’t see why he couldn’t sneak out through the top of the door, crawl across the wall, and go into my sister’s room and find some place to hide in there. I don’t know why he took to haunting me for 2 days – on my fucking ceiling nonetheless.

This spider has been making circuits of my wall. Tonight, as was on Sunday, I spent hours tracking It with my spider locator flashlight across my wall, on the ceiling, up and down and around and around. And then, said spider had the audacity to breach itself into a location that I hoped it would never venture to: above my bed.

He didn’t zoom across my ceiling or my wall. No, he took his time. He’d stop, turn around, go the other way. Stop, go back, go down the wall, then up again…He crossed the corner and lingered in the crease where my wall and ceiling meet, a location which just happens to be precisely above my pillows. Slowly, the little bastard had the audacity to go down my wall, a little closer, a little closer, to the point where I could safely reach it. And that’s when I noticed how juicy he was. He looked different from the side; so 3-D, and non one-dimensional as he appeared on my ceiling. If I squished him in such close proximity to my bed, that would be a lot of guts, it may even squirt. I decided to wait for the spider to get closer to the door so I could give him, again, the option of leaving and going into someone else’s room, or dying at the hands of me.

He chose to die at the hands of me.

He reamed up the wall, above the door, and got himself into the highest corner imaginable. Still, the little shit had the balls to run in and out to taunt me. I had to devise another plan, and thankfully that plan didn’t take long to execute.

As I stood with my bedroom door open at 12:45 in the morning, lights off, flashlight on, I heard steps on the stairs. Dad, coming to bed: dad, who’s taller than me who can reach the spider and kill it and save the day!

I explained the situation to my dad. Clearly, he has a lot of paternal love for me if he decided the best decision he could make was to kill this spider for his daughter at 12:45 in the morning instead of focusing himself on getting ready for bed. Dad took my giant wad of Kleenex from my hand, and I put the spotlight on the spider, and we were ready.

Dad jumped. No spider. Jumped again. Couldn’t reach it, and established my desk chair wasn’t safe enough to stand on, and that the chairs in the hall weren’t small enough to fit through my door. Quickly he left, and returned with a stool to stand on so he could get sufficient height to kill this spider once and for all.

One, two, three, SMACK! Dad takes the Kleenex from the wall and inspects it. Not only did dad squish the spider on my wall, it then proceeded to fall from the Kleenex and almost ran away. Now began the excavation of my carpet in attempt to find the spider and kill it once and for all. Thankfully, it didn’t get far (being partially squished and all), and dad found it, squished it repeatedly between his fingers, and it died a horrible, violent death at the hands of my father, the Spider Killer.

This raises the question: must we really kill spiders so violently? Must we be so afraid of them? Well no, because in truth we harm them more than they harm us, but the thought that the spider could’ve descended upon my face as I slept and planted eggs in my skin is just awful and horrifying. I gave It a chance, and it didn’t take it, he had to die. I established it was treason for him to continue living in my room as I knew the more I stalked him with my flashlight, the angrier he got, and the more he probably plotted my demise by spider bite, or some other horrible spidery thing.

I don’t care if my punishment for the death of It is rain tomorrow. I don’t. I care about the fact that I can sleep soundly now knowing that this spider isn’t creeping on my wall. I can sleep soundly knowing that I’m a valued enough member of my family to have been helped to such an extent at such an hour.

Spiders; they’re the smallest shits I know, and the scariest things I don’t want to know.

And Megan: yes we can split Henry Cavill. Which end do you want??

This kind of makes it better...

*drool*

Will write more later, when i'm back on that crap Acer and I can post an article I wrote lastnight with regards to the ethical treatment of spiders.

And i'm feeling better today. So thanks.

And God said, "...'You're fucked. Sorry kid." *shrug*

I'M FUCKING FED UP WITH EVERYTHING RIGHT NOW.

I am fed up with waiting. I'm pissed off, i'm angry, and frustrated.

I FUCKING HATE EVERYTHING RIGHT NOW. EVERYTHING IS FUCKING RETARDED.

I have reached the point where my brain wants to explode. How long can a person wait? How many sympathy stares from older people can i continue to take? Today when i got blood taken the lady looked sadly at my two bruises from 2 weeks ago. She got sad when i told her what vein to go to. She got sad when she read on my chart that I'm waiting for a double lung transplant. And while she didn't tell me she was sad, i felt that feeling of saddness leak from her body and into my own.

"You're too young for this," she said. "You've been doing this too long."

Usually I don't let this stuff bother me, but today's been a day when it seems like EVERYTHING i attempt to do fails in epic proportions.

Combine that constant failures of the day with the fact that i feel like utter fucking shit and it can pretty well be established that it isn't taking much for my soul to feel like it's falling into a gutter full of shit.

Everyday it seems like I wake up and one more thing is taken away from me. The last couple of days i can barely put socks on without getting horribly out of breath. Walking around even slowing is horrible. It isn't fucking fair. I hate this.

To add to this, this fucking Acer laptop is being a complete and utter dick. I just turned it on and it's being so slow that i just want to beat the utter shit out of it. I want to throw it out the window. I want it to explode. I want to kick a small child over on the pavement.

My car is falling apart. My money is running out. My financial independence is slowly dwindling and i hang on to every ounce of money i have saved by not spending it. When i will be able to work again god knows.

Everything is piling up. I cannot be positive all the time. This isn't the blood-taker lady's fault; i am grieving for myself as i watch my life pass me by and there is not a thing i can do about it.

I don't want ppl to tell me it will be ok. I don't want people to tell me to smarten the fuck up and be happy. Fuck you if that's what you think. I want ppl to get angry, and see the wrongness of it all. It seems like for every shred of anything in my life, i have to work my ass off for it and at some point that goodness gets taken away. I know other ppl work their asses off too, but do you work your ass off to breathe everyday? To shower? To put ur fucking socks on? Is your computer actually good too, and your car and your phone? FUCK IT ALL AND FUCK ALL THE SUPERFICIAL THINGS IN LIFE.

I am mad, I am sad, and i don't fucking care who knows it.

...Too much Eastery goodness

Ugh, definitely had too much Eastery goodness today. Definitely stuffed myself to maximum capacity of all things Easter, and all things goodness.

This year, Jenna spent Easter tidings with moi et ma famie, since her famjam resides on The Rock out in Newfie-land. All was well, and nana and papa were here as always. I am sad to report however, that papa's Spiderman bag was not in attendance, since it is spring-time now and boots are no longer a necessity for navagating the great outdoors that exist between car and house. I informed Papa of his Spiderman bag fame, and he said, "Of all the things to make me famous, it's a Spiderman bag" and proceeded to laugh like it was the funniest thing he had ever heard.

Today was a long day, and I am quite exhausted for no real reason. Jenna and I spent the pre-supper festivities holed in my room (while the fam tortured themselves by watching the Masters), and attempted to program my DVD converter. Lets just say that i don't lie when i say my DVD player hates me. And i don't stretch the truth in any sense of the word when i claim that TV converters hate me more. When they fail to work, or make me turn my TV on manually, i tend to bang them against something, aptly trying to let them know that if they fuck up on me again, this kind of abuse will happen in more frequent intervals. And alas, they keep fucking up and they eventually begin to suffer from Shaken-TV Converter Syndrome.

We tried and tried to program this fucking thing and it still doesn't work, and at one point it caused me to scream, "we're two university educated women, yet we can't program a DVD converter".

What is the world coming to?

Speaking of what the world is coming to, this years Easter conversations consisted of one main topic: Murder.

Happy Easter to one and all.

Fail.

Oh well, in other news of greatness, i've discovered that Flashlight Location is an excellent way to locate spiders on my ceiling.

Boo

I'm so bored.

I'm so fucking sick of this lifestyle, of the constant repetetivness of my weekends...the sitting around, the reading, the boringness that encompasses it all. I am ready for a change. I just want my damn transplant already so i can feel better and get on with my life.

...But i'm so afraid.

I want this so bad, but i'm so acustomed to a life of nothing that i'm afraid of when i'll have a life of something. I'm so used to being the girl in the background, yearning to be the girl in the foreground, that when it comes to actions, I don't think i'd have the guts to do that. It's easy for me to remain in the shadows and watch everyone's lives goes on while mine is in slow mo. It sucks and i'm not ok with it, but there is nothing anyone can do to help me get out of this rut.

Unless they die - and that's not something anyone should ever wish.

Blah. I want to be better and feel better and live so bad, but am i ready for all the commitment that comes after? The testing, the potential but thankfully temporary move to TO....can i do that? I probably can, but god knows i hate Toronto. I do not, and am determined to not, have another summer where i loaf around and waste my time. I have spent 3 years like that b/c my lungs are slowly on their way to hell. Not again. Not this time. This summer i want to be a wild child and live my life....but then i come back to that same old tune that sings in my conscious: I am afraid.

I have to stop being afraid.

Boo fear. Boo lung disease and boo to uncertainty.

Boo everything.

Transplant: hurry the hell up!

AHHHHHH!!!!!!!!!

Remember the Days When…

When we’d play hide and go seek for hours on end. On those long, hot summer’s nights, you’d wait for that knock on your door at 8pm, the tribal call telling all the kids in the neighbourhood to convene at the house at the end of street, and that Hide and Seek would begin when everyone got there.

Remember the days when we tired of hide and seek, and we’d lie on the front boulevards watching the stars, the June bugs and fireflies. We’d talk about what we wanted to be when we grew up, how scared we were to go to high school when we were older, and how we were convinced we’d go to university and college.

Remember the days of playing marbles on the stone deck, dance parties on the wooden decks, and how it was so much better before we all had fences. Remember being able to go to the house behind yours by simply crossing the backyard, instead of going around the street.

Remember when it was a huge deal if someone in the neighbourhood got a pool, or a new pet, or a new sibling, or even a new car. It was a big deal if you played your ghetto blaster too loud out your bedroom window and it bothered the neighbours outside. Remember dancing to The Sign and being convinced it was and would forever be the best song in the entire world.

Remember those days of hide and go seek, playing hours on end. Always being the first one caught, or celebrating the fact that you officially found the best hiding spot and convincing yourself no one else had ever thought to hide there. Remember the rules of how you weren’t allowed to go behind the school, or leave the end of the street, and to always come home if there was lightning – no matter if the game was finished or not.

Remember the days when we were younger and your best friends in the entire world consisted of the people who lived on your street. Remember the days before the internet, blackberries and cellphones, when people – young and old – made a point to connect with one another face to face, instead of through a signal you can’t even see.

Remember when you knew all your friends phone numbers off by heart, needing to ask permission before you could call them, and sitting by the phone for hours waiting for your friends to call.

Remember being invited to your friends for dinner, begging to have a sleepover, and watching scary movies you were too young to watch in the first place.

Remember a time when you could honestly say you knew everyone who lived around you.

Can you say that now?

Irrational Fear #700 482 000:

Oldness.

I am terrified of oldness.

I am terrified of getting old, of looking old, of feeling old, of things that once worked not working anymore.

I am terrified of graduating university. I am terrified to lose all the freedom that comes with being ‘youthful’. I will cry when i graduate, and not because i’m not happy, but because I will miss it and the social aspects that come along with being a student.

This is a fear of mine that is pretty prominent in my life at the moment. I like the way I look. I like being 23. If i could be 23 forever – in looks and body – i would. Sure my lungs would be good and brand spankin’ new, but it’d still be me. And i don’t mean to immortalize myself by staying and looking this way forever b/c i died or something, b/c that won’t happen. But is there anything wrong with being a little selfish and conceited in announcing to the world that i think i look pretty damn good the way i am?

Why must aging feel like this? Why must you be so scary...so...offensive....so frightening?? My friend Robert speculates that we’ll probably always feel like this, but that it’s ‘your face that takes all the hits’.

I don’t want my face to take any hits. I enjoy it the way it is, thank you very much.

Sure, aging doesn’t change the person, but i dunno. Damnitt fuck i just don’t know.

But this has been another episode of Irrational Fears. I’ve most likely struck a spark in every young person’s mind that reads this, and no doubt offended those who are cool with aging. I love all of you, I just hate the fact that it happens.

Boo.

And just for the record, my last entry was actually published April 7th. I don't know why blogger chooses to be a bastard and say i posted it monday, april 6th. But it's annoying me. And in case blogger fucks todays date up as well, today is Thurs, April 9, 2009.

"Take with food"

What exactly does that mean?

What constitutes 'food'? Honestly. Do they mean an all-out meal, or would a single oreo suffice? Could you have a handful of peanuts or a cupful of cadbury mini eggs?

Do you always need to take it with water? Why not pop? Or milk? Or juice? What about a smoothie? Or why not just throw the pill in ur mouth once ur food is mashed up, swallow it all at once and hope for the best?

Riddle me this one, people. Riddle me this.

As i am still in the early stages of Sporonox, I am in an on-going battle with myself as to what exactly constitutes 'food', seeing as i have to take this pill 3 times a day - you guessed it - with food. And seeing as i have a hard time actually eating 3 meals in one day (I prefer to graze like a cow), i find that my pill-taking times vary considerably day to day.

This probably is not helping the cause.

If anyone has any idea, let me know.

Onto other topics

Today was day 1 of having to get weekly bloods taken thanks to Sporonox and it's potentially horrific liver side effects. My arms are still shockingly bruised from Fridays hospital excursion. I must admit that the blown vein residing on the side of my right arm is pretty impressive: it's all black and purple like the vein exploded - puncture mark in the center included. I could probably get away with telling people I was bitten by a one-toothed vampire and they'd beleive me. It's smallish but it looks vicious and painful. It's not, but i will use it to get out of whatever strenuous activity is forced upon me if need be.

So anyways, i get to the MSD lab and sit down. I am taken to the back and take off my coat so they can take blood. I hold out my left arm and the blood taker-lady ties the plastic thing around my arm as tight as humanly possible and orders me to make a fist. I do.

"Squeeze harder" she says.
I do.
She takes her plastic gloved hand and taps a finger over the inside of my elbow.
She looks at me. Her eyes widen.
She feels nothing.
"Oh my god!" she says.

"I got IV's Friday," i explain. "My veins are bad; they tried twice. See?" I proudly hold up my right arm and display to her the bruise left by the altercation my vein got into with the needle.

"What did they do to you?!" she asks horrified. For some sick reason, i found this funny and smiled. I love my nurses and they don't do it on purpose; my veins just suck from years of use.

She holds the needle to my vein and i start to laugh. "Don't laugh till i've got it in," she says.

She finally feels a vein and holds the needle to my skin. It's massive and looks like a thick steel pin. It's gonna hurt; I know it. It's so big that i can see the hole in the end of it. She sighs and looks at me.

"Good luck," she says, "to you and me both" and proceeds to stick the needle in.

No dice. No blood return, no nothing. She digs around, tries different angles, and nothing. She pulls it out, and it hurts. She holds the cotton swab to it and looks at me.

"I'm sorry," she says. "You have to come every week?? Give me your other arm." She takes my left arm, finds a vein, cries 'eureka!' stabs me, gets the blood, and tells me she'll use that spot next week.

I'm not so thrilled about that. That's the spot they give me my IV's in. It's the only spot i have left. It's my secret weapon, and this fucking sporonox shit will all but deplete my only vein source.

FUCK!

Once again, i wish i could get a Picc or a Port but nooooooooooooooo my immunolgists won't have it.

GAH!

So that's all. Today wasnt a horrible day. I just did Tobi. I'm off to TO tomorrow. I'll write if it's eventful. If not, i'll stay completely silent until something interesting happens.

Which will be hard, b/c i never shut up.

1,2,3 it’s me

Well here I am again, lost in the jungle of my thoughts. It seems that I have too much time to think on my hands, and alas, think and think I do. Think of life, think of boredom, think of illness, think of unreachable freedom, and as always the person who has not called.

This weekend marks weekend number 2 (or is it now 3…?) of my Sex and the City marathon. It also marks the end of Levaquin (yay!), and the full beginning of Sporonox, aka potential-liver-damaging drug. So it sucks…not that I ever had any intention of spending my time in perpetual alcoholic euphoria or anything, but now I feel like since my liver is under siege by some antibiotic bastard, I can’t lighten up and have a drink with the girls once their exams are done.

All avenues of fun are unreachable – I am divided by the Moat of Illness. I’m on one side (the outside) and fun and friends and living like a 23 year old is on the other side where the castle is (can you tell I’ve been reading too much historical fiction? Can you also tell that I clearly have too much time on my hands to think this in depth? Sadness, I tell ya).

I guess it can be established that I hate thinking. I officially hate my brain for making me venture into corners of my self that I’d rather not have to deal with, think of, or listen to. Doubt plagues me. Why am I doubting? For no reason, I’m doing it for something to do, and trust me I’m doing a great job because I feel like shit about myself.

I hate thinking. I hate thoughts. I hate that as a woman, I am not a simple minded creature; I hate that I know I am creating problems in my head that don’t have to be there – because they don’t exist!

I hate that I’m even writing this. But hey, as long as we’re honest….1,2,3 it’s me.

Sporonox Shock

So i can proudly announce that I broke down and cried at the pharmacy yesterday.

*bows*

Yes, yes. Upon my arrival at the pharmacy, I was instructed to wait while they served other customers (clearly with less needs - the bastards), and after some time was quiety ushered aside and given my Sporonox ("To treat the fungal infection.." the pharma-man whispered - as if it were a sinful, shameful thing).

The shock following came in 3 waves:

1) "You're lucky you have good insurance; this is over $500."
-->*shock*<--

2) "You'll have to take this 3 times a day with food"
-->*gasp*<--

3)" You'll have to take this for 6 weeks"
-->*insert tears here*<--

And that, people, is how i became the first person to probably ever cry at the pharmacy.

It's ok though, i'm over it now, but I fully beleive i am entitled to be overwhelmed with my illness at times. I am entitled to mourn the fact that i am currently on 5 antibiotics and have had all sense of fun snatched from my hands since my current med regime is so strict (tobi, stupid sporonox 3 times a day WITH food that MAY or MAY NOT damage my precious liver). I beleive i may have a stomach of steel now.

The last 2 weekends i've had Sex and the City thons - alone. Since the girlies are dutifully studying for exams, I have spent much time alone. Which is ok, but it's getting lonely. Too much Sex and the City reminds me that i've been single for too long. Gah. Stupid thinking. Stupid thoughts!

That's it. No more. There's nothing witty and intelligent left to write. I got my hair done today and i feel better.

I must go find something to eat.

Patience, Patients

Today I feel like a patient. Today was my fully-loaded Friday where i have to go for rehab and then zoom across the city to get my IV.

Plans for attending rehab were promptly stalled this morning when a train decided to stroll through the front of the hospital. It didn’t run through the hospital, sillies, it strolled on its tracks which are located at the front of the hosp, which happen to pass across the street i take to get to the hosp. And today for some reason, said train decided to take its merry little time while on its journey.

I waited 35 minutes for this fucking thing to take its time. 35 fucking minutes waiting in ’93 Ford Tempo in the pouring rain; rain which was falling at such a rate i feared the Red Rocket and i would be picked up and swept into the Grand River and all that would be left of us would be a few big pieces of rust and an oxygen tank.

Suffice to say that didn’t happen, but people were doing 3 point turns left, right, and center to get the hell out of this train/pouring rain mess. I would’ve done the same, but since i didn’t know it was a train till after the fact, i stayed.

By this time it was 9am. Rehab closed at 10am, and I had to get to the other end by 10am to get my stuff. I had no energy to hall a tank in pouring rain and all that, so i said fuck it, called them up, explained the situation, and zoomed to the other end. I couldn’t get a parking spot in the parking garage, so i parked on the roof.

In a flood.

How the water didn’t reach up into my car and flood the floors is beyond me. I can honestly say though that my car now stinks of mould and wetness. Probably a healthy environment for the lungs.

I got 2 pokes today. 2 bruises to show off my bravery. I weighed in at a stonkingly solid 43 kilos (94.6 lbs). They took my height: i’m still short. Oh well. What with all my zooming around on medical business today I feel like quite the patient. I got home only to be met by a message from my dad telling me to call TGH physio room to confirm next weeks appt, so i did that; i called Dave to confirm that i’d be meeting him next week. I still have to endure 20 minutes of Tobi (with my new compressor who i’ve named Lord Grey, b/c its grey).

And I still have to go back out into the rain to get my precious antifungal.

In happy news, I need to get my hair done and my mum instructed me to make an appt and that she’d pay for it, and i’m writing this on the new laptop, which i fucking love and am plotting to steal at some point. And i’m loving my new book.

More antibiotics?!?!

FUCK MY LIFE

I just received a call from my co-ordinator at TGH, and I've got some new introductions to make. So excuse me:

Bronchiectasis, meet pneumonia.
Pneumonia, meet pleurisy.
Pleurisy, meet asperguillus.
Asperguillus, meet anti-fungal that will destroy you. But please antifungal, do not destroy or hurt my liver the way the co-ordinator told me you had the potential to do.

As you can see, I'm a little upset. I want to cry, I want to break things, but i don't have the energy to do either. There is a simple solution for these problems my friends, and it's called GIVE ME MY DAMN TRANSPLANT ALREADY!!!!!!!!!!!!!!!!!!!!!!!!!!

I was slightly upset to begin with, and I got my new compressor today and it's grey. I would've liked another colour but hey, you can't pick and choose.

So here i sit, riddled with pneumonia, pleurisy, and asperguillus. I know the last one isn't bad but jesus christ people, when is enough enough?!

And Meghan, my knees still snap:( They hate me:(

Revelations in the Bed Chamber

I sit here in an utter chaos mess of pain. And it’s not like it’s some horrible shooting pain in the lungulars, but rather, a cacophony of …painful sensations. It’s the pleurisy and the pneumonia at the front; it’s the heartburn in the middle, and it’s the muscle pain in my ribs from wearing a bra too tight for far too long.

The pain in my ribs seems to be near the surface. It doesn’t matter if I slouch, sit up straight, or scrunch on either side, the pain is there, and it feels like the flesh and muscle is being pulled away slowly from my rib bones.

Romantic, isn’t it?

I took a Tylenol 2. I caved, but so far I don’t feel as if I’m flying, and I’m not suffering any other horrific hallucinogenic sensations like my previous time using T2 (anyone recall me feeling like I was dying, flying, and suffering from some horrible virus?). I remembered now – 2 months late – that the pharmacist man told me to take 1 Tylenol 2 with food, wait half hour, and take the next, and that way I wouldn’t suffer any horrifying effects. Basically, I neglected all his information and suffered horribly, only to remember and heed his advice too far into the future for it to ever benefit me properly. Oh well, c’est sara.

I had a conversation with Meghann tonight that had to do with post-tx lung connections. Yes, you read that right, and if you don’t understand just what I mean let me explain this to you. Sit down, grab a snack, cross your legs, and go pee, b/c it could be a long time.

I confessed to Meghann my irrational fear that involved my lungs falling out post transplant. Yes, falling out. It never dawned on her to consider and question just how the lungs stay intact inside the body, once the donor lungs are attached to our brachis. Basically (from my understanding) they suture and glue them in three places. Well me, being me, created a fear that what if, by some divine force, someone or something hits me, and the lungs become detached and fall out/ break away and falls into my intestines.

I told her that when I confessed this to my surgeon that he laughed at me. LAUGHED at me. Meghann told me she never considered this. I told her only someone like me would ever do so. But really…what if people??