Lastnight when I was at Jenna's, standing in her kitchen debating what sort of tea to have, and trying desperately hard not to ruin it (like the time i ruined it at Katey's) i began to have chest pains. Not heart attack chest pains, but pleurisy chest pains.
Admittedly, I had been forwarned. I got to her place and immediately complained of feeling like my ribs had been crushed by a giant, like some big hand grasped itself around my ribs, squeezed, and crushed me. And earlier in the day i got feelings and jolts of pain but that's so commonplace I just thought nothing of it.
Anywho, stop getting me offtrack. So we were in her kitchen when the pain began to manifest itself in the front of my chest - smack in the middle - spread evenly over the top lobes of my lungs. It feels like an approaching storm, a big dark cloud that you anticipate coming, that you can see on the horizon, and it gets closer and closer and darker and darker and it spreads out. Sometimes it's not as bad as it looked from far away, and sometimes it is.
My first thought wasn't, "Oh crap, pleurisy again." My first thought was actually, "Yay! Pleurisy! If it's bad enough i can get out of rehab tomorrow and just get my IV instead in the morning and my day will be done a lot sooner!"
I swear to god. This is just another testiment to the fact that I am an innately horrible person. To wish pleurisy on myself to get out of rehab again? Can I not remember the fact that in July I was rendered imfuckingmobile for 13 days b/c of it?
So we sat there on Jenna's couch and as the minutes went by the pain just got worse, as predicted. With pleurisy, you don't just feel the pain when you move. It's always there - when you sit, when you walk, when you sleep, when you lay down, when you shit, when you fart, when you blow your nose, ect - it's always there. It just kept growing, that hollow, sore, sick feeling.
So i left, and the pain was getting worse. I got home and went to bed, and at 2am the pain was so bad that i had to take a Tylenol 2. I didn't want to. I wanted to resist b/c i knew i'd wake up and the pain would be gone and i'd have to do rehab when i don't have the energy to do it.
Of course it worked. Of course i woke up with no pain - this is Tylenol 2 people - it could probably cure evil if it wanted to. Under normal circumstances, i would have skipped around the room and screamed with joy, but instead my thought was, "FUCK. I have to go to rehab."
Blah blah blah, long story short, I went to rehab, i got my IV, I was compliant and I still have pleurisy pains. Lets all join hands and sing Kumbiyah if we must.
I guess the lesson to be learned is that you may get what you wished for, but wishes aren't stupid; they will fuck you up.
Friday, December 12, 2008
Wednesday, December 10, 2008
This is how we do it
Today was TGH's rehab Christmas party. It was great and there were lots and lots of people there - doctors, surgeons physio people,pre-tx, post-tx - and they were all in their festive sweaters, or wearing red, generally being merry and spreading Christmas cheer.
I had the opportunity to meet some great people, and the following short story is of what could have been a spectacular moment, and I had to be weird about it. This is how i ruined it:
We were getting ready to leave, and I made my way up to the food table like a sneak thief. I was picking, spreading, and eating like a foraging monkey, when Merv came up and wanted to introduce me to some people. I looked around and grabbed a block of shortbread, and awkwardly made my way to the group of very tall people. They all seemed really eager to talk to me, which was nice, but unfortunately my ride was holding the door open, waiting for me...
Merv: Your name is...?
Me: Bree.
Merv: Bree, these people work with Trillium Gift of Life. They are the ones who are out there right now looking for lungs for you, and they are the ones who call you when those lungs are found.
Me: Oh yeah? Cool *thumbs up* You guys do a great job!
*silence*
Merv:...Yeah....you look great...
Me: *silence* Um....I have to go now...
I promptly left with my wall of shortbread, waved goodbye b/c a hand action felt appropriate, and generally made the situation a lot more awkward than was strictly necessary.
This ruined moment has been brought to you by me.
Before all of this happened, I spent some of the party time (since i had to be at rehab for 10:30 and the party started at 10 and went till 1pm) chatting with people, and generally distancing myself from any opportunity to do something weird or make people feel uncomfortable like the example above. For the most part, I sat on a chair and people watched, and that was all.
That's about it really. I may update more later when my brain begins to re-function.
I had the opportunity to meet some great people, and the following short story is of what could have been a spectacular moment, and I had to be weird about it. This is how i ruined it:
We were getting ready to leave, and I made my way up to the food table like a sneak thief. I was picking, spreading, and eating like a foraging monkey, when Merv came up and wanted to introduce me to some people. I looked around and grabbed a block of shortbread, and awkwardly made my way to the group of very tall people. They all seemed really eager to talk to me, which was nice, but unfortunately my ride was holding the door open, waiting for me...
Merv: Your name is...?
Me: Bree.
Merv: Bree, these people work with Trillium Gift of Life. They are the ones who are out there right now looking for lungs for you, and they are the ones who call you when those lungs are found.
Me: Oh yeah? Cool *thumbs up* You guys do a great job!
*silence*
Merv:...Yeah....you look great...
Me: *silence* Um....I have to go now...
I promptly left with my wall of shortbread, waved goodbye b/c a hand action felt appropriate, and generally made the situation a lot more awkward than was strictly necessary.
This ruined moment has been brought to you by me.
Before all of this happened, I spent some of the party time (since i had to be at rehab for 10:30 and the party started at 10 and went till 1pm) chatting with people, and generally distancing myself from any opportunity to do something weird or make people feel uncomfortable like the example above. For the most part, I sat on a chair and people watched, and that was all.
That's about it really. I may update more later when my brain begins to re-function.
Sunday, December 7, 2008
Shiiiiiiiiiiiiiiit!!!!!!!!!!
I lost my pager.
FUCK.
I didn't notice until after supper, when i went to look for it. No where to be found. Not in my room, in the bathroom, in the kitchen, on the couch, on the counter, in the bathroom, im my purse, or in the car.
No where.
FUCK.
All of us looked high and low. My parents - being parents - made me feel bad about it, and irresponsible b/c i attach it to my purse strap. My mum quizzed me about where i last remember seeing it. I wanted to cry. I wanted to scream. I wanted to rip someone's head off. My dad paged it to see if it was somewhere hidden in the house. It wasn't.
So off to the grocery store my angry dad and I went (it was the last place i had been with my mum when we had gone out earlier). We went to the spot we parked (yay handicapped spot!) and looked around in -22*C weather. It wasn't there, but Zehrs was still open so we popped inside and went to customer service.
No one was working. Of course. It was 8:20 and they closed at 8:00.
And then i saw it.
By itself. On the lotto table alone, like a shining peice of black dirty gold. My frazzled pager, who has been dropped, stepped on, smashed, and now lost, a little warrior of time, an old faithful, alive and well in Zehrs.
I was so relieved. I snuck behind the counter and got it, told the lady working cash that it was mine and that i had lost it, and we went home, hand in hand, pager and I, along with a very angry Dad.
I feel better that i've found it, but my dad is still pretty angry that I lost it and had no idea.
And I'm pretty sure he wants to commit infantide now.
FUCK.
I didn't notice until after supper, when i went to look for it. No where to be found. Not in my room, in the bathroom, in the kitchen, on the couch, on the counter, in the bathroom, im my purse, or in the car.
No where.
FUCK.
All of us looked high and low. My parents - being parents - made me feel bad about it, and irresponsible b/c i attach it to my purse strap. My mum quizzed me about where i last remember seeing it. I wanted to cry. I wanted to scream. I wanted to rip someone's head off. My dad paged it to see if it was somewhere hidden in the house. It wasn't.
So off to the grocery store my angry dad and I went (it was the last place i had been with my mum when we had gone out earlier). We went to the spot we parked (yay handicapped spot!) and looked around in -22*C weather. It wasn't there, but Zehrs was still open so we popped inside and went to customer service.
No one was working. Of course. It was 8:20 and they closed at 8:00.
And then i saw it.
By itself. On the lotto table alone, like a shining peice of black dirty gold. My frazzled pager, who has been dropped, stepped on, smashed, and now lost, a little warrior of time, an old faithful, alive and well in Zehrs.
I was so relieved. I snuck behind the counter and got it, told the lady working cash that it was mine and that i had lost it, and we went home, hand in hand, pager and I, along with a very angry Dad.
I feel better that i've found it, but my dad is still pretty angry that I lost it and had no idea.
And I'm pretty sure he wants to commit infantide now.
The Flip Side to Lung Disease
As always, i was inspired to write this blog while getting ready to step into the shower.
The other day I heard on the radio that people shouldn't worry about gaining weight over the Christmas holidays b/c in actuality, you only gain 1.5 lbs. As i stared at my pale self in the mirror, I reflected on all the crap I've eaten this past week, and decided to step on the scale and see if I could defy the world and what it tells you about eating high caloric stuff.
94 lbs.
HA! Eat it, health nutritionists people! Not a pound, not a roll, not a bulge, not a jiggle. It was then as I realized that I had lung disease to thank for this condition! And it inspired me to blog about the flip side of lung disease and what it has taught me.
1) Lung disease and waiting for transplant has given me a lot of Me Time Bree time. I spend a lot of time with myself - in fact, every waking hour - and I've learned that I can entertain myself greatly, but it's also allowed me to read to an excessively sick amount and as a result, my book collection has grown substantially. One thing university robs you of is the freedom to read your own material of choice, when you want, for how long you want, and if you don't really understand it at some parts, no big deal, b/c you're not going to be quizzed on it at any time in the forseeable future.
I read like a whore. You have no idea. Every waking minute, my nose is buried in a book. I cannot put them down. I am like a sponge. I absolutely love being taken away and so wrapped up in a story that you want to physically bite somone's hand off when they try to touch what you're reading to find out what it is. I love falling in love with someone's story (OUTLANDER) and I love reading about the past (hello Tudor history!). I will mourn the time when I am thrown back into the real world and forced to function like a normal human being. I will be breathing and I will be whole..I won't have time to go off to Never Never Land and live through someone else. I cannot praise books enough b/c they are my essence. If i could not read, I would die. My brain would melt and I would seize to exist.
2) I bake a lot. I've always baked, but now I bake about twice a week, and I'm baking things that I never had to time to bake before. I am expanding my culinary skills and it's marvelous. And I'm eating a lot more too.
3) As stated in point one, lung disease really is just a giant excuse to be lazy. I don't mean it in a bad way, but when you don't have any energy to do squat, you don't really need to justify it. So for now, waiting for transplant is my time to be lazy without excuses and without feeling guilty. I cherish my laziness and my spot on the couch. And i will never forget the long hours i spend on it reading. Like a whore.
4) Being listed for transplant I have met a lot of people like me. A lot of young people specifically. When I got diagnosed I truely beleived I was the only young person who had a lung disease to the extent that I did, and I was therefore completely alone and no one would ever understand me. I would debate what I would tell people, b/c people always comment when they hear you cough. You can only pull the "i'm sick" excuse for so long. After a year, you're not fucking sick anymore, there's something horribly wrong with you! Having a lung disease is one thing, but then when you have a whole other disease on top of it, you have to flip a coin and choose which one you'll tell people about, and which one you'll hide. Now that i've met young people with lung issues and other conditions, I have opened up and seen that I am not alone and that it's ok to be like this. I have met a lot of great sickies whom i love dearly. Even if we can no longer be within 3 feet of eachother:(
5) You learn who your real friends are, the ones who are there for you, who listen to you drone on and on for hours about how shitty you feel, how congested you are, how much phelgm you cough up and how you had to leave their house b/c you had to poo!! (ok maybe I went a little too far) The fact is, they're not grossed out by the fact that you sound like you've got TB or pneumonia. They know you can't help it, yo, and they love you muchly b/c of who you are, and you love them muchly for loving you!
6) Sympathy/Compassion? Not that I ever had any to begin with, b/c in all honesty, I don't. Has my sympathy/compassion for other people grown? Not really. I can't be bothered with normal people who complain about their minor health crap in general. There are exceptions (like my dearies!). My compassion for fellow sick people has a foundation. I will say that. I'm not completely heartless, I do care and I do feel sorry for people, but i'm not going to shower them with sympathy since it won't get anybody anywhere. I don't hand sympathy out like candy. You have to earn it. When you're ill to the extent that the people I have seen are, you learn that they just want to be seen and treated just like everyone else, not some damn sick case!
7) And last but not least (saving the best for last!), the never-happy medium, the always-at-war and the issue-that-will-always-be *sound trumpets* MY SKINNINESS! *cheer*. Sometimes I hate it, sometimes I love it. Some days i feel too thin, the next day my arms are too fat and I look like a fat mole stuffed into a pair of jeans (or so i feel). I know that I'm not. Me, who has eaten 3 out of the 4 dozen gingerbread people I made on Tues; me, who has consumed more chocolate turtles, more cans of coke, more macaroni and cheese than anyone i know...and not an ounce. And i love it. And by god if this changes post transplant I will be really pissed off! But, it may teach me that i need to treat my body like a temple, to eat healthy (i had an apple yesterday, i'm starting) and to not eat crap to the extent that I do. But i will not lie, I will enjoy it for as long as I have it. And i hope that I am always like this. But like i said, there is never a happy medium so we will see!
So that's it. It doesn't matter what I say at all about lung disease, there is no happy medium anywhere. If lung disease were a mental illness, we'd all be bi-polar!
The other day I heard on the radio that people shouldn't worry about gaining weight over the Christmas holidays b/c in actuality, you only gain 1.5 lbs. As i stared at my pale self in the mirror, I reflected on all the crap I've eaten this past week, and decided to step on the scale and see if I could defy the world and what it tells you about eating high caloric stuff.
94 lbs.
HA! Eat it, health nutritionists people! Not a pound, not a roll, not a bulge, not a jiggle. It was then as I realized that I had lung disease to thank for this condition! And it inspired me to blog about the flip side of lung disease and what it has taught me.
1) Lung disease and waiting for transplant has given me a lot of Me Time Bree time. I spend a lot of time with myself - in fact, every waking hour - and I've learned that I can entertain myself greatly, but it's also allowed me to read to an excessively sick amount and as a result, my book collection has grown substantially. One thing university robs you of is the freedom to read your own material of choice, when you want, for how long you want, and if you don't really understand it at some parts, no big deal, b/c you're not going to be quizzed on it at any time in the forseeable future.
I read like a whore. You have no idea. Every waking minute, my nose is buried in a book. I cannot put them down. I am like a sponge. I absolutely love being taken away and so wrapped up in a story that you want to physically bite somone's hand off when they try to touch what you're reading to find out what it is. I love falling in love with someone's story (OUTLANDER) and I love reading about the past (hello Tudor history!). I will mourn the time when I am thrown back into the real world and forced to function like a normal human being. I will be breathing and I will be whole..I won't have time to go off to Never Never Land and live through someone else. I cannot praise books enough b/c they are my essence. If i could not read, I would die. My brain would melt and I would seize to exist.
2) I bake a lot. I've always baked, but now I bake about twice a week, and I'm baking things that I never had to time to bake before. I am expanding my culinary skills and it's marvelous. And I'm eating a lot more too.
3) As stated in point one, lung disease really is just a giant excuse to be lazy. I don't mean it in a bad way, but when you don't have any energy to do squat, you don't really need to justify it. So for now, waiting for transplant is my time to be lazy without excuses and without feeling guilty. I cherish my laziness and my spot on the couch. And i will never forget the long hours i spend on it reading. Like a whore.
4) Being listed for transplant I have met a lot of people like me. A lot of young people specifically. When I got diagnosed I truely beleived I was the only young person who had a lung disease to the extent that I did, and I was therefore completely alone and no one would ever understand me. I would debate what I would tell people, b/c people always comment when they hear you cough. You can only pull the "i'm sick" excuse for so long. After a year, you're not fucking sick anymore, there's something horribly wrong with you! Having a lung disease is one thing, but then when you have a whole other disease on top of it, you have to flip a coin and choose which one you'll tell people about, and which one you'll hide. Now that i've met young people with lung issues and other conditions, I have opened up and seen that I am not alone and that it's ok to be like this. I have met a lot of great sickies whom i love dearly. Even if we can no longer be within 3 feet of eachother:(
5) You learn who your real friends are, the ones who are there for you, who listen to you drone on and on for hours about how shitty you feel, how congested you are, how much phelgm you cough up and how you had to leave their house b/c you had to poo!! (ok maybe I went a little too far) The fact is, they're not grossed out by the fact that you sound like you've got TB or pneumonia. They know you can't help it, yo, and they love you muchly b/c of who you are, and you love them muchly for loving you!
6) Sympathy/Compassion? Not that I ever had any to begin with, b/c in all honesty, I don't. Has my sympathy/compassion for other people grown? Not really. I can't be bothered with normal people who complain about their minor health crap in general. There are exceptions (like my dearies!). My compassion for fellow sick people has a foundation. I will say that. I'm not completely heartless, I do care and I do feel sorry for people, but i'm not going to shower them with sympathy since it won't get anybody anywhere. I don't hand sympathy out like candy. You have to earn it. When you're ill to the extent that the people I have seen are, you learn that they just want to be seen and treated just like everyone else, not some damn sick case!
7) And last but not least (saving the best for last!), the never-happy medium, the always-at-war and the issue-that-will-always-be *sound trumpets* MY SKINNINESS! *cheer*. Sometimes I hate it, sometimes I love it. Some days i feel too thin, the next day my arms are too fat and I look like a fat mole stuffed into a pair of jeans (or so i feel). I know that I'm not. Me, who has eaten 3 out of the 4 dozen gingerbread people I made on Tues; me, who has consumed more chocolate turtles, more cans of coke, more macaroni and cheese than anyone i know...and not an ounce. And i love it. And by god if this changes post transplant I will be really pissed off! But, it may teach me that i need to treat my body like a temple, to eat healthy (i had an apple yesterday, i'm starting) and to not eat crap to the extent that I do. But i will not lie, I will enjoy it for as long as I have it. And i hope that I am always like this. But like i said, there is never a happy medium so we will see!
So that's it. It doesn't matter what I say at all about lung disease, there is no happy medium anywhere. If lung disease were a mental illness, we'd all be bi-polar!
Friday, December 5, 2008
And the sun rises over Southwestern Ontario...
This is the pic that I took outside my bedroom window this morning, just as I left for rehab. The sun was rising at 7:45am and I couldn't help but gawk at the sunrise and marvel at the pretty colour that it gave off. It was simply too amazing to not get a picture of, and alas, here it is!
If you look closely, you will see the snowcovered roofs, but don't be fooled by the warm looking sun, it was a frigid -6 this morning with a windchill of -15, enough to make anyone contemplate stepping outside at such an ungodly hour. When it's this cold, the sun heats nothing up!
I didn't want to go to rehab today, but I soldiered it up and went. I spent the day reading, sleeping, being generally lazy, and also eating way too much Christmas food. I think i'm rotting on the inside I've eaten so much crap. No lie. I think my digestive system has gone on strike and my guts on a major backlodge b/c i've got this perminant bulge at the front that forms into 2 rolls when I sit down. I'm used to one roll, that can generally be concealed in the folds of my sweatpants, but today I just felt like a regular fatty and I am going to be honest, I don't like it. Even wearing sweatpants I just feel so....like I really need to stop eating Turtles, Gingerbread people, and pizza, 'and all that jazz'.
I may likely be the only person on the face of the earth to rot from the inside out over the Christmas holiday. Just maybe!
Other than that I'm here. Not doing much. Feeling pretty useless, and eating my feelings b/c it makes me feel productive.
That's about it. I just finished wrapping my sister's Christmas present, and I'm pretty sure it looks like something that was sent and damaged in the mail.
Thursday, December 4, 2008
Blog Award Nom!
It's about fucking time!!!
Anyways, for months and months I have seen my blog friends be nominated for blog awards, and I got the feeling that I'd have to put myself out there like a whore to get noticed, but apparently not anymore thanks to AMY! (http://www.mycfjourney.blogspot.com/) There are rules to this dealio and this is how it works:
1. post the award on your blog
2. link me for giving it to you
3. link the originating post nominating you
4. pass the award on to 5 more people
5. post the rules
2. link me for giving it to you
3. link the originating post nominating you
4. pass the award on to 5 more people
5. post the rules
My noms (I don't know how to hyperlink so bare with me):
Amy has been a true friend since the moment I met her, and she shares her own stores of phelgm and poo with me as well. I love you!
When I initially met Alice on facebook, I beleived she was stalking me, and instead of running, blocking, avoiding - like any sane human would do - I opened up and found a near and dear friend(even though she's all the way in South Africa!) Alice has helped me so much since we first began talking last December (happy 1 year of friendship woman!) Although Alice has won blog awards before (pft) I'm nominating her again b/c that's how nice of a human being I am.
Rosie is a fantastic lady who had a double lung transplant and lives in Ireland. Reading her blog inspired me to start my own, and i also consider her a cherished friend who helps me understand and get through the crazy forest that is TransplantLand.
Amazing writer, had a lot of struggles pre and post tx, and very inspiring. Doing her utmost to raise awareness for organ and tissue donation in the UK and is doing a great job!
FINALLY a fellow Bronchiectasis-er. Just started her blog. Waiting for a transplant like myself, great to talk to, and she's been on O2 for 16 frigging years. You poor woman.
So I think that's all I'm supposed to do? Amy, let me know if i've somehow managed to screw this up. THANKS, YO!
(AND I'm sorry that the paragraph thing isn't working AGAIN! I want to kill blogger sometimes!)Grrr...
Monday, December 1, 2008
I'M OFFICIALLY DISABLED!
Hear ye, hear ye, yes it's true, I AM OFFICIALLY DISABLED.
Don't get me wrong, this isn't exactly something that i'm proud of, and you won't see me strolling around in a wheelchair for shits and giggles any time soon, but it is true, i went through and handed in my little sheet declaring that I qualify for a handicapped spot, and i was rewarded with the little permit, with that tiny blue person sitting happily in wheelchair in the right hand corner.
So i went to the Ministry of Transport, and it was awkward, b/c clearly I don't look disabled (at least I hope not). The box that my doctor checked off on the sheet states that I am an individual "with a lung disease to such an extent that total forced vital capacity in one second is less than that of 1 litre". So i stood there, and I made a point of coughing a lot, and breathing heavily, even though I wasn't out of breath, just to demonstrate you know, that I am infact, in need of a lung transplant and can't walk too far, and am essentially disabled.
So when all was said and done, I got my pass and was free to go. I was so thrilled with myself that the only thing prevently me from skipping merrily down the street was my lung disease. I then picked up my meds and all was right in the world.
That's about it really. There isn't much to say or post. I hope you're all well. Happy December 1st, yo!
Don't get me wrong, this isn't exactly something that i'm proud of, and you won't see me strolling around in a wheelchair for shits and giggles any time soon, but it is true, i went through and handed in my little sheet declaring that I qualify for a handicapped spot, and i was rewarded with the little permit, with that tiny blue person sitting happily in wheelchair in the right hand corner.
So i went to the Ministry of Transport, and it was awkward, b/c clearly I don't look disabled (at least I hope not). The box that my doctor checked off on the sheet states that I am an individual "with a lung disease to such an extent that total forced vital capacity in one second is less than that of 1 litre". So i stood there, and I made a point of coughing a lot, and breathing heavily, even though I wasn't out of breath, just to demonstrate you know, that I am infact, in need of a lung transplant and can't walk too far, and am essentially disabled.
So when all was said and done, I got my pass and was free to go. I was so thrilled with myself that the only thing prevently me from skipping merrily down the street was my lung disease. I then picked up my meds and all was right in the world.
That's about it really. There isn't much to say or post. I hope you're all well. Happy December 1st, yo!
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