Saturday, February 28, 2009
I'm having the most boring weekend i think i've ever had the misfortune of experiencing. Lastnight and tonight, I have spent by myself b/c everyone is busy, the parents are away, and unlike me, people are busy doing stuff.
To pass the time i baked cookies, which turned out to be a huge fucking mistake b/c they took forfuckingever and i still have to ice them - which i am all entirely too lazy to do. They can fuck themselves. I'll ice them later.
I vaccumed and realized my legs were sore from standing for too long from baking them. Then i showered and felt better...and then i realized that i had no plans for the second weekend in a row and now i feel so bored that i could start a fire somewhere.
I am watching The Duchess for the second time.
I want tea, but am in a debate as to whether or not i want to go to Timmies or make it myself. Lets face the facts: something tells me i'm entirely too lazy to get up, put shoes on, and a coat, and get into my car and drive to tims.
But another part tells me i'm too lazy to get up and boil water.
Fuck my life - again.
Today i've eaten a bagel and chips, and some cookies that i made. That's it. I am starving b/c of my lack of motivation and down in the dumps attitude.
Did i mention that i got an email Thursday night telling me a dear friend is dying? I did. That probably has something to do with it.
Fuck my life, and fuck the email.
What else? Yesterday afternoon i managed to entertain myself by watching Ace of Base music videos on Youtube. It was fun, and i managed to dance in my spot on the couch with such enthusiasm that i hurt the back of my neck headbanging. I went to Jenna's for dinner and that was it.
That's about it. I hope you guys are all having a better weekend than i am...but it seems like everyone is having a shit couple of days.
Let our shite reunite and form some semblance of happiness.
Here are 2 random websites to pass your time. The first one is a favourite of mine, aptly called "FUCK MY LIFE", about shitty things that happen to normal people: http://www.fmylife.com/
Second, for anyone who gives a shit about 18th century gossip, try this gem that i stumbled upon during my regular random google search (the side bar sites are great): http://georgianaduchessofdevonshire.blogspot.com/
Good afternoon, good evening, and goodnight.
Thursday, February 26, 2009
First things first: I'M DONE CIPRO - somebody fire a cannon, hark make the angels sing - SOMETHING - i am done! I have been on cipro exactly 20 days. And to be honest, i'm slightly afraid that i am finished now b/c i have the creeping suspicion i'll be sick in a heart beat. Is that terrible that i am thinking that? Probably.
Upon a moment of reflexion (anthropological word...muhahaha) i realized just how sick i was, and i'm 100% convinced i was a stone's throw away from being in the hosptial. I feel better, but not totally. The tightness is gone, but i'm still coughing and blah blah blah. What can i do? Well, I celebrated by going to McDonalds. I got a happy meal, and a collectors toy (which truth be told was only got b/c i had every intention of giving it to jocelyn...but then i saw it was a wizard of oz collector and i'm contemplating my generosity on it..)
So yeah, McDonalds was a great choice, as I have lost 5lbs since being on cipro since it has stolen my appetite. What else? There's nothing else to mention...except that my computer is getting fixed once again *cue rage* and it was supposed to be back in my custody on Tues but there has been no word on its exact whereabouts. I must look into that. For now i am getting by on my mum's ancient Acer laptop.
That's about it. Hopefully my computer comes back soon.
Thursday, February 19, 2009
For those of you who are familiar with my nana stories, she is a crazy lady who doesn't hear half of what you say, and employs the much fabled but widely used smile-and-nod technique. This technique comes in quite handy especially over the phone, since she can't see your face when you talk to her and she misses 99.9% of what you say. I say this with total affection: for anyone who knows me, knows I love my nana to peices and would give her a portion of my brain so she could remember things a little better than she does, if i could. But that doesn't stop me from having fun with her, esp. since she never clues in to when I'm doing it.
So i'm on the phone with nana, wishing her a happy birthday, when i asked her what all she has done today. It went like this:
Me: Hi nana! happy birthday!
Nana: Thank you dear! It's so sweet of you to call an old gal on her birthday!
Me: What are you talking about nana? You're 25 remember?
Nana: I wish! A ha ha!
Me: What did you do today, nana?
Nana: Well...your papa and I spent much of the day at the wart specialist. Your papa has warts on his foot and i have to help him take care of them..
Me: *promptly stops eating peanuts*
Nana: So we're coming to your house Sunday! Don't make too much food!
Me: Don't worry nana, I only baked you 3 cakes this year.
Nana: *smile* uh hah? Yes.....*silence* So what are you all eating for supper tonight?
Me: Well, there's no food in the house, so we're probably going to eat eachother.
Nana: *silence* Uh hah? Yes.
Pretty soon after that the conversation ended. Nana clearly didn't get the fact that i stated we would be eating eachother for supper. Just like the time over Christmas when i asked her if she wanted gin to drink and she smiled and said, 'uh hah'.
Oh nana, I love you to peices and i'm sorry i get laughs at your expense. You truely are the best person ever. Happy 80th! I can't wait to see you Sunday, esp. since I now know you can see me after your laser eye surgery....b/c i didn't know you were blind for the last 15 years!
HAPPY BIRTHDAY NANA I LOVE YOU!
Wednesday, February 18, 2009
I told Meghann this and she said that it was bad, but good in the fact that it probably bumps me up on the list. I was kind of indifferent to it, said i hope so, and then she confessed that if i got done, that would leave her all alone on the list to suffer without me without her dearly beloved Canadian friend.
I told her to shut up. I told her to shut the fuck up right now, and yet she swore that she would be super happy for me. But when i told her she initially wouldn't be, she admitted that she'd be jealous. I said of course, and that if she got hers before me i'd be mad as hell, and then i'd eventually be happy.
At least i'm honest.
So today was a long day. Up at 7, meet Dave at 8, get in TO at 10, physio from 10:30-12pm, Spiro at 1, then Dave had clinic at 2, got in at 3, came out at 4, we left at 4:30, got home at 7. The weather was shit and i feel cynical about it all, yet bizarrley happy and at peace with everything. Why? Why not? Maybe admitting my horrible selfish thoughts to someone, and having them reflected back, makes me feel less alien. Nobody wants to feel like an alien.
Despite the fact that my day was essentially blah, it was great. There was no rush for anything, it consisted of a lot of waiting, sitting, talking with other transplant/hospital cronies, catching up, it was great.
I am finally done Tobi. FINALLY! Somebody please shoot a cannon and rejoice with me. No more Tobi for a month - woo hoo! I'm still on cipro, i still feel like crap, yesterday i looked like i had jaundice in my eyes, but i'm happy.
Monday, February 16, 2009
For myself, I'm spending the day isolated in my room, with my dad downstairs, my mum tanning and picking up Timmies, and my sister at the gym. Maybe we will see eachother tomorrow.
So far today I have slept in, showered, weighed myself, discovered i've lost 5lbs, and made a huge pot of mac and cheese which i will soon regret in the imminent future. Most people are likely not spending it with their families, and in most cases they are most likely spending it away from them - like myself - and trying not to get on eachother's nerves by being annoying (which I can attest to).
My friend Robert deduced that the holdiay should thus be called "Lazy Fuck's Day" instead of "Family Day" in order to get the meaning across clearer. Parliament should be forgiven for confusing its citizens with such a title, since we all know we need that day off but the only way to make it sound legit is by claiming it as a 'family oriented holiday'. I'm not fooled; i don't think any member of the gov't is spending it with their fam. They're prob on their blackberry wondering how fast they can get away from them before they become driven insane.
Which is why i am holed up in my lair.
That's about it.
Happy Lazy Fuck's Day.
Friday, February 13, 2009
I have asthma: i've always had it, from the day I was born, till the day my lungs are replaced, I will be asthmatic, and for the most part, that doesn't bother me. But it does annoy me when i wheeze non-stop and i sound like a canary.
No lie. First the Neb Crisis is solved temporarily, and since that resulted in a temp. happy medium, something had to go wrong, so my asthma decided to step in and be a total bitch. I've been wheezing every single day for the last 4 days.
I've taken all my meds: every inhaled, every puffer, every physio, and CPT thing, I have done, but nope, asthma is acting like a total fucking bitch and being extremely annoying. If this shit keeps up i'm ringing up my resp. doc and begging to come in. I can't deal with it; i'm done. I'm fed up.
Wednesday, February 11, 2009
I am so excited! Words cannot describe the sense of elation that I feel. I was so nervous for this for some strange reason. It's not like a uni exam or a medical test, where you go, do it, get it over with, and it doens't really affect you afterwards in any way, shape or form; it's driving, and i'm pretty much fucked if i haven't got a liscence. I hate being dependent on people, so i'm uber stoked that I no longer need to take any more liscence tests until I am 80 or unless by some bizarre chance Ontario changes their driving liscencing laws.
WOO HOO. GO ME.
I am feeling a little better. Like a diligent little child I held to my promise and rang up my co-ordinator today. I told her i was feeling slightly better but still really out of breath, and that i had felt really really sick and was unsure as to whether or not i was really sick with some other horrible affliction or if it was the effects of being on so many meds at once. She said that the codeine in the Tylenol 2 is the most common thing that makes people feel like they're going to puke their guts out all over the place ( i didn't mention that i made me feel like i had epilepsy though...), and that could potentially be the culprit that has made me feel like such shit. She then left it up to me as to whether or not i'd pop in for clinic on Mon and i said "if you think that I should..." and i said "ok i will", but then she remembered Monday is "Family Day" and everything is closed so....She said that if i still feel really short of breath and like Cipro isn't doing it's job, to ring up my respirologist and see her ASAP which I think i most likely will do.
IV meds next? Most likely.
Other than that i have been good. I am going to see the new Friday the 13th movie on Friday the 13th and will by all accounts scream my head off with Krystal and Jess and end up making a spectacle of myself.
I must say that i find it ironic that they place such a scary emphasis on Friday the 13th and yet the very next day it's Valentine's Day and that somehow makes it all better.....
Monday, February 9, 2009
"Taking Tylenol 2 may cause you to feel, one or all of the following:
-like you're floating
-like you might fall over
-like you may vomit all over the place
-like you may have a seizure
-like you have a shaking disorder
-lack of appetite
-afraid for your life
-like you have a scary virus that may or may not kill you
If you experience any or all of these symptoms, good luck."
That being said, I am also on a lot of antibitics. That horse pill, Cipro is messing me up I think. While the lungs feel less stuck to the rubs today ( a pleural adhesion, thanks Alice), i keep getting increased pain as the day goes on.
My assumption is that i've got whatever virus is plaguing everyone at the moment. But for now i'm gonna go shake somewhere else.
Sunday, February 8, 2009
In the lungulars.
Anyone who knows me knows that I have an extremely hard time telling my parents - especially my dad - about just how shitty I feel. My mum is easier to tell b/c she won't break down and feel guilty about it and feel bad to my face. I know she does - it's natural - but to my face she listens and is great about it. But when I tell my dad he shakes his head and gets upset and I hate to see that, b/c i feel like it's my fault. I know it's not my fault, and i know he knows I don't think that, but I feel bad for making him feel bad, and b/c of that feeling of badness I just don't bother to tell him just how bad the badness is until it goes away.
Or not at all.
The standard convo about my lungs day to day goes like this:
Dad: How are you feeling today?
Me: The usual. You?
Dad: *sigh* Are you sure?
Me: Yes. *walks away*
But today when I came home from picking something up, I sat on the stool and huffed and puffed and dad said,
Dad: How are you feeling?
Me: I feel like shit.
Dad: *sigh* Well you better call the hospital tomorrow
Me: I have to anyways *walk away*
Don't be concerned about the me 'walking away' bit. That's just how it is. I don't really like sharing my illness feelings with my dad in his presence more than is strictly necessary. I know that's probably weird, and probably unhealthy, but I know that my parents feel bad that I am sick like this and there is nothing they can do. I don't want to have to make them feel bad by wallowing in my crappy feelingess in front of them, so it's easier for me to vamoosh and wallow somewhere else, where I can at least be creative.
I have been on Cipro and while I am less productive, it is still the same colour and i still feel horrible. I feel like my lungs are stuck to my ribs, and someone told me that they probably are. So tomorrow after my lesson, I will ring up my co-ordinator and tell her, and then I will plead with her to not admit me until after Weds, as I have a test then that HAS to be done and out of the way. That is my bargain and I hope it gets accepted.
In other news, the neb compressor scenario has been dealt with temporarily. My dear friend Sarah has been kind enough to lend me her extra compressor until I am done Tobi, and in that time I will try to get mine fixed. The fact that I actually went to length to procure another one speaks volumes for my frame of mind and initiative, b/c usually I would just leave it and stop Tobi altogether and fuck it all. But the fact that I managed to borrow one to complete Tobi tells me that something serious is most likely wrong with les lungs.
And if we're gonna be honest, if I do end up getting admitted, at least i have more or less accepted that i can no longer do this on my own. That is the game of lung disease, and sometimes you must accept help.
Other than that I hope you're all well.
Before I go, this is just one reason why i'm so afraid of whales. Good luck not dying:
I've come to realize that I'm afraid of bizarre things. First sharks, then sharks miraculously breaking out of my bathtub drain and then eating me, or a snake biting my ass as it slithered up the toilet pipe after it escaped from a neighbours house, and now humpback whales, sperm whales, sinking on a ship, being in explosion, oceans, sea monsters, getting murdered and iceburgs.
I blame google for many of my 'things i'm officially scared of' afflictions.
Friday, February 6, 2009
I don't know if it's officially died or what, but if it isn't my neb cups are that are acting like douchebags, then it's the compressor itself, b/c it takes 10 minutes to turn my Tobi into vapour and after inhaling it for 45 minutes, the meds havent gone down one bit.
I found an old neb cup/mask thingy under the sink in a plastic bag and tried that out, to see if it was the tubing, but no, good old, expensive douchebag compressor appears to be the culprit. And regardless of who's ruining what, i'm using the old neb tubing and cups and i'm pretty sure that i never washed them the last time i used them, b/c they taste like Hypertonic Saline.
Fuck my life.
This is very frustrating b/c i didn't get any Tobi yesterday, and if this shit keeps up tonight i am going to abandon tonights thing and have to trek out and get a new compressor most likely. It sucks, b/c compressors aren't cheap either.
I have other stuff to blog about but i'm just annoyed with my stupid compressor. GAH!
Wednesday, February 4, 2009
Random confession #1:
"I have a whole bunch of pot cookies in the freezer that I'm not allowed to eat now because the druggist says NO. I wanted to have fun, but for obvious reasons couldnt smoke pot.
So I ate it.
It tasted like skunk."
Random confession number #2:
"It is an ugly baby.I went and saw it and it looks weird, not like my own. Its eyes are black and its head is long. It's a funny looking baby. Even its mouth is weird. You should look for it on Facebook"
I heart pot cookie and ugly baby confessions!
Anyways, I had to get up at 5:30AM (underscore, italicize, bold to showcase the hours' importance) to leave to meet Dave at 6am, so we could depart for the big TO at 6:30 am, so i could make my echo appt at 9am, and subsequently make and complete my physio appt. at 10:30am. And wonders of all wonders, even though I took 2 Meletonin's at 9pm lastnight, and i went to bed at 9;30, i did not sleep a wink and I saw every waking hour and every waking minute, right up until 5:14am when i decided i may as well get out of bed and be miserable with my cat.
I don't know why I couldn't sleep. I tossed, i turned, i got tangled in O2 tubing, i slept on my favourite side, and my arm fell asleep, then my legs got uncomfortable and i couldn't stop thinking, and i had a song in my head and the same part played over and over, and then i got thinking about Jenn (Findingher....follower of this blog and dear friend, who is NOT doing well AT ALL and it breaks my heart beyound all comprehension). It was a horrible night, and a long day, and I'm wondering why at 10:24pm i am still awake. It's no wonder that I sound like Barry White at the moment. But it is a wonder as to why my body is as sore as it is...i feel like I fell down a hill and bounced off a rock.
I started Cipro today. All the way to TGH i resisted the urge to beg Dave to pull over so i could puke. Sometimes I wonder what is worse: the sudden urge to puke on the 401 and Gardiner Expressway, or being hit with the shits on the 401 and Gardiner Expressway. I'm pretty sure i would puke in a heart beat over trying public defication. That's just me.
So yeah, I called TGH monday complaining that i wasn't feel well - at all. Monday I was more productive, and I was so out of breath that putting my shoes on sitting down I honestly thought my heart would explode b/c i couldn't catch my breath, so onto Cipro I went. The giant horse-pills them. So far I don't feel better, but my waist-line does.
That's about it. It seems like everyone is sick, whether it be with the flu, pneumonia, or just plain sickness, everyone's got it, and if you don't it will catch up with you so just stop running.
If there's one thing I can say before signing off on today's blog, is that please send prayers, or vibes, or w/e you have, to Jenn Walsh in Massachusettes.
Jenn, you are a fighter, and you have sat and bitched with me over countless hours about the pain of trying to get listed, and being listed, and testing, and sleep issues, and the overall crappiness that comes with lung disease (she has CF). You are my fellow Virgo and a total rockstar, and I treasure the friendship that we have. And i hope that our friendship will continue and that you get a new liver and some new lungs. God knows you are a kind soul and that my heart breaks knowing that you are suffering in the hosptial. I AM PRAYING FOR YOU. Never forget that. We are ALL praying for you.
Monday, February 2, 2009
I woke up to the phone ringing. It was TGH, saying they had scheduled and echocardiogram for this Thurs. I was shocked, as I had no idea i had one at all. I rang them up and told them this and they said, "Oh we just made it today." I informed them that this Thurs didn't suit me and was fortunate to get it switched to this Weds instead so that's good.
I've been very out of breath today, and it has nothing to do with Tobi. I've been on Tobi for 15 days now so it shouldn't be crippling me. The best indication to me of my dying lungs was when i sat on the floor to put my runners on, and I was so out of breath I thought I would explode. Talk about being kicked when you're already down, eh? I also noticed that I have been coughing up some more lung goo than usual, and considering the fact that I am already on Septra, and Zithro, and now Tobi (all antibiotics), and i'm MORE productive, i figured i was sick and rang up my co-ordinator at TGH and she said i need to go on Cipro so that makes 4.
Another annoyance is this damn floating pain in my lung, which I've determined isn't pleusiry, but rather is attributed to a floating ball of goo. Said ball of goo is most likely a mucus plug but it's easier for me to envision it as a ball of goo instead, just floating around aimlessly which I'm sure it doesn't do. Either way, i'm trying to get it out, but am clearly not trying hard enough if i'm sitting here bitching about it.
So that's how today's been. It was goregous out today (did I say that?), clear sky, sunny, +3*C, and I didn't wear mitts or need to turn the heat on in the car! YAY!
Sunday, February 1, 2009
Let us all hold hands and thank Whoever- It-Was who discovered anasthetic. The link as follows is The 18th Century Guide to Amputations, Operations, and Other Medical Tips. http://www.dailymail.co.uk/news/article-1130463/Revealed-The-18th-century-guide-amputations-operations-medical-tips.html
Does this make me feel better about my unfortunate decision last year to watch Awake the day before being listed? No, b/c that is an experience that still haunts me to this day. Does it make me thankful that anasthetic was invented so that people like me who need surgery can do it (relatively)pain free? Yes. Does that quell my fear of being conscious with my eyes closed giving the illusion of sleep? NO.
(And before I go, if you would please scroll down to the previous entry entitled "You Know You're Canadian When..." and go to #44, I can proudly announce that that statement proves to be true today! At a balmy 5*C today, my sister and mother tried to force me outside and enjoy how 'warm' it is. I think i may go so far as to crack a window open tho. Seriously.)
So thank-you, Mr. Whoever-You-Are for your brilliant gift of anasthetic. You are responsible for millions of pain-free operations since your marvelous creation. Keep up the great work, Whoevever-You-Are.