2 years ago today I was listed.
1 year ago today we got rid of the Red Rocket.
And today, I am alive, no longer on the list, nothing.
In celebration I took the Spawn for a walk in the cemetary. I know that sounds morbid but it's just so peaceful, there no children there for her to lunge at, and it's just...beautiful.
We parked near Karyn and took off from there. It gave me time to think and reflect on the last 2 years. Being listed wasn't necessarily a bad thing as it was the only ticket i had out of my old life. Without it, i'd probably be dead by now. I'd still be struggling for every little thing. But now? Now i can breathe easy and nothing stops me.
I thought about my donor and got teary eyed as usual.
And then i tackled the revelation that i can't have kids.
I've thought about it a lot, but whether i've actually thought indepth enough for me to get upset about it, i don't know. To be honest, i'm pretty ok with it. I've never wanted kids really, and that could explain my general lack of affection for all things children. They scream, they cry, they smell, they shit themselves and projectile vomit all over things. They destroy stuff. They take away 'me' time. And i'm too selfish to have that snatched away from me. But this doesn't mean i all-out hate children, i don't, i like a few of them, just not all.
If we're being honest, i always saw myself as the 'cool aunt' in life, the chick who has a lot of money and is always travelling. BUT. I've thought of adopting too. It's a huge responsibility.
So yeah. Part of me doesn't care, part of me is deeply upset, and part of me is relieved.
Maybe the conculsion is this: I am a horrible, selfish person.
That doesn't suprise me.
Um. I can't think of what else to post. Sorry if this is boring.
Showing posts with label listed. Show all posts
Showing posts with label listed. Show all posts
Thursday, April 29, 2010
Wednesday, August 5, 2009
Innocence
A white cat stands shakily in the middle of a hardwood floored room, staring longingly at the open windows before her. Opened wide, a strong warm summers breeze glides in, the scent of flowers drifting in along them.
The cat stares. Too old, and too unsteady, she isn't strong enough to jump up onto the windows ledge, to feel the breeze she longs to feel, to smell the scents of the flowers she cannot see. She shakes, her legs too old and weak to let her stand much longer.
I watch from the hallway, saddened by the sight of my Heidi Spidey. I cannot watch anymore, and i come to her and gather her off the floor and place her gently on her favourite window, near enough to the back of the chair so she can get off the window when she has tired.
The triumphant little, Gremlin-ish face that stares back at me as i place her on the window beams with so much happiness that it lifts my heart. For although I know it's a simple gesture, the joy it has brought her moves me greatly. She may be an animal, and she may be old, but she still desires, feels, wants. She's still here.
If placing her on the window so she could watch the world outside, feel its breeze and smell its flowers, is what has made her day, then it has made mine as well. I will not forget the joy that radiated from her little white face today. What seemed impossible to her was made possible in the blink of an eye, when she thought that no one was watching or noticing.
And i know the same for myself. Because when I think life is impossible, the moment will come when it is possible, and in the blink of an eye, my world will change even though I thought that no one was watching or noticing.
The cat stares. Too old, and too unsteady, she isn't strong enough to jump up onto the windows ledge, to feel the breeze she longs to feel, to smell the scents of the flowers she cannot see. She shakes, her legs too old and weak to let her stand much longer.
I watch from the hallway, saddened by the sight of my Heidi Spidey. I cannot watch anymore, and i come to her and gather her off the floor and place her gently on her favourite window, near enough to the back of the chair so she can get off the window when she has tired.
The triumphant little, Gremlin-ish face that stares back at me as i place her on the window beams with so much happiness that it lifts my heart. For although I know it's a simple gesture, the joy it has brought her moves me greatly. She may be an animal, and she may be old, but she still desires, feels, wants. She's still here.
If placing her on the window so she could watch the world outside, feel its breeze and smell its flowers, is what has made her day, then it has made mine as well. I will not forget the joy that radiated from her little white face today. What seemed impossible to her was made possible in the blink of an eye, when she thought that no one was watching or noticing.
And i know the same for myself. Because when I think life is impossible, the moment will come when it is possible, and in the blink of an eye, my world will change even though I thought that no one was watching or noticing.
Tuesday, August 4, 2009
I have bit my pride
You all will be happy to know that yesterday i bit my pride and let someone do something for me. Yes, yes, I have finally admitted to you all and to my parents that I cannot do everything anymore, and it's easier to submit and admit to the fact that you are no longer fully able to do things than to plow through and hurt yourself by being stubborn.
It starts like this: my mum washed my bedding yesterday and put it on the line for me. When it came off she brought it up to my room and offered to make my bed for me. I told her thank you, but I could do it myself, knowing full well it would take me the greater part of an hour, and would involve much out of breathness and pain and dizziness and unhappiness. But i was used to it, so why should today be any different, right?
Well, I took some things off my bed - pillows - and even that small act left me in pain and gasping. This 21% lung function business is no jokes, it's really horrible, and I wasn't looking forward to making my bed but it had to be done. And after that I could at least rest for an hour whilst doing meds, before i did the other task of showering.
My mum called up the stairs, "Do you want me to help you?"
*holds breathe* "...Ok...if you're not busy..."
*smiles* "Of course not. It won't take long"
She went to one end and I essentally sat at the foot of my bed and put the sheets on down there. Even tho i was sitting i was still out of breath. My accomplished bed making in 3 minutes - 57 minutes faster than I ever could've. I was amazed; stumped even. But i was happy that i finally let go of my pride and admitted that I can't make my own bed anymore b/c basically, it makes me want to die, lol.
But as they say, "the first step in acceptance is admitting that you have a problem!"
This 21% lung function business is really no jokes. I can't do much anymore. I just sit here, and i read, and thankfully since I am small I don't take up too much space, so that's a plus. Today I am having mac and cheese again for lunch. I woke up wanting pancakes but waited too long and the urge to make them left me. Maybe another day...
Yesterday was fabulous. It felt like summer and there was a strong breeze. The breeze was loud and it sounded like waves at the beach. I spent all day on the deck reading Galway Bay, thinking, reflecting, journalling. I got humbled by my mum, enlightened by some talks with great friends, and overall, had a great day that left me feeling very, very happy:)
I made Peanut Butter Rice Krispie Squares topped with melted chocolate sauce the other day. To say that the recipe is so fantastic and immaculate is not a lie: this recipe is so good that men could give birth.
Would you like it? Well here it is:
Ingredients:
1 cup corn syrup
1 cup tightly packed brown sugar
1 cup peanut butter
1/2 teaspoon vanilla extract
7 cups Rice Krispie Squares
butter a 13x9 pan or whatever you have handy.
In large pot cream together corn syrup and brown sugar. Bring to a boil, stirring constantly. Once boiling, remove from the heat and add the peanut butter and the vanilla. Mix until smooth and gradually add the Rice Krispies. As the mix binds it will become harder to stir, which means it's almost done!
Transfer rice krispie mix from large pot to your buttered pan. Smooth it out until desired thickness.
In small saucepan, melt 1 tablespoon butter, and add 1 cup semisweet chocolate chips. Melt together until smooth. Pour over and spread across rice krispie squares. Cut rice krispie squares into squares.
And then eat them all. :)
It starts like this: my mum washed my bedding yesterday and put it on the line for me. When it came off she brought it up to my room and offered to make my bed for me. I told her thank you, but I could do it myself, knowing full well it would take me the greater part of an hour, and would involve much out of breathness and pain and dizziness and unhappiness. But i was used to it, so why should today be any different, right?
Well, I took some things off my bed - pillows - and even that small act left me in pain and gasping. This 21% lung function business is no jokes, it's really horrible, and I wasn't looking forward to making my bed but it had to be done. And after that I could at least rest for an hour whilst doing meds, before i did the other task of showering.
My mum called up the stairs, "Do you want me to help you?"
*holds breathe* "...Ok...if you're not busy..."
*smiles* "Of course not. It won't take long"
She went to one end and I essentally sat at the foot of my bed and put the sheets on down there. Even tho i was sitting i was still out of breath. My accomplished bed making in 3 minutes - 57 minutes faster than I ever could've. I was amazed; stumped even. But i was happy that i finally let go of my pride and admitted that I can't make my own bed anymore b/c basically, it makes me want to die, lol.
But as they say, "the first step in acceptance is admitting that you have a problem!"
This 21% lung function business is really no jokes. I can't do much anymore. I just sit here, and i read, and thankfully since I am small I don't take up too much space, so that's a plus. Today I am having mac and cheese again for lunch. I woke up wanting pancakes but waited too long and the urge to make them left me. Maybe another day...
Yesterday was fabulous. It felt like summer and there was a strong breeze. The breeze was loud and it sounded like waves at the beach. I spent all day on the deck reading Galway Bay, thinking, reflecting, journalling. I got humbled by my mum, enlightened by some talks with great friends, and overall, had a great day that left me feeling very, very happy:)
I made Peanut Butter Rice Krispie Squares topped with melted chocolate sauce the other day. To say that the recipe is so fantastic and immaculate is not a lie: this recipe is so good that men could give birth.
Would you like it? Well here it is:
Ingredients:
1 cup corn syrup
1 cup tightly packed brown sugar
1 cup peanut butter
1/2 teaspoon vanilla extract
7 cups Rice Krispie Squares
butter a 13x9 pan or whatever you have handy.
In large pot cream together corn syrup and brown sugar. Bring to a boil, stirring constantly. Once boiling, remove from the heat and add the peanut butter and the vanilla. Mix until smooth and gradually add the Rice Krispies. As the mix binds it will become harder to stir, which means it's almost done!
Transfer rice krispie mix from large pot to your buttered pan. Smooth it out until desired thickness.
In small saucepan, melt 1 tablespoon butter, and add 1 cup semisweet chocolate chips. Melt together until smooth. Pour over and spread across rice krispie squares. Cut rice krispie squares into squares.
And then eat them all. :)
Monday, August 3, 2009
Allow me to get philosophical on you for a second...
This thought occured me to me the other night while i was somewhere in the realm between here and sleepy land. I was drifting away when this idea engulfed my brain and flourished itself through my hemospheric wiring (oooh...ahhh), and it was kind of as if a white light flashed itself into my brain and lit the whole place up.
It is this: there is an end to all of this, and be thankful.
I know I spend a lot of time bitching and moaning about how much i hate waiting, how i feel so shitty, how everyone around me is getting done and i'm still waiting. I bitch and moan about the ppl who talk to me and i write off their comments by telling myself that they just don't understand. And then i get miserable and descend into my dark cave and cover myself in a shroud of cobwebs and negativity.
But alas my people, i emerged my the rubble of my torn up thoughts and saw the light out of this shithole: there is an end, and i should be thankful.
Why? Well first of all, i'm thankful that i'm actually listed, and not still in the horrible process. I'm thankful that soon all of this will go away and I will be breathing through the generosity of someone else. I am thankful that lung transplant is even an option for me at all.
Most of all, I am thankful that I won't have to live the rest of my life on the cliff of obscurity, watching my life and my days go by...I won't have to watch everyone get on with their lives while i sit on the sidelines and try to live through them. Because soon enough, I will be one of them.
I feel sad for those who transplant is not an option. I feel terrible for those who feel as terrible as i do and there isn't a damn thing they can do about it. And while i'm irked that i have been waiting for 15 months, at least those 15 months are working for me instead of against me.
And what i'm thankful for most of all, is that this all occured to me when i wasn't making an effort to have coherent thoughts. That maybe all along, i've known this, and have never acknowledged it.
It is this: there is an end to all of this, and be thankful.
I know I spend a lot of time bitching and moaning about how much i hate waiting, how i feel so shitty, how everyone around me is getting done and i'm still waiting. I bitch and moan about the ppl who talk to me and i write off their comments by telling myself that they just don't understand. And then i get miserable and descend into my dark cave and cover myself in a shroud of cobwebs and negativity.
But alas my people, i emerged my the rubble of my torn up thoughts and saw the light out of this shithole: there is an end, and i should be thankful.
Why? Well first of all, i'm thankful that i'm actually listed, and not still in the horrible process. I'm thankful that soon all of this will go away and I will be breathing through the generosity of someone else. I am thankful that lung transplant is even an option for me at all.
Most of all, I am thankful that I won't have to live the rest of my life on the cliff of obscurity, watching my life and my days go by...I won't have to watch everyone get on with their lives while i sit on the sidelines and try to live through them. Because soon enough, I will be one of them.
I feel sad for those who transplant is not an option. I feel terrible for those who feel as terrible as i do and there isn't a damn thing they can do about it. And while i'm irked that i have been waiting for 15 months, at least those 15 months are working for me instead of against me.
And what i'm thankful for most of all, is that this all occured to me when i wasn't making an effort to have coherent thoughts. That maybe all along, i've known this, and have never acknowledged it.
What I've Learned from Horror Movies
1) If it feels like a bad idea, it probably is.
2) Wooden barriers between the outside world and the inside world are not efficient enough in keeping out the threat of a zombie invasion.
3) Running up the stairs is a bad idea...
4) But running down them will most likely result in getting you killed.
5) Contrary to popular beleifs, comforters and blankets do provide a legitimate protective shield against all-things scary.
6) Screaming and flailing will slow you down and get you caught.
7) There's never really an ending.
8) When a scary movie doesn't strike you as scary at the time, it will strike you as scary when you're alone, and in a dark place, with little to no light, and little chance of ever acheiving or locating an adequate light source.
9) Be in shape: there will be lots of running.
10) Running and screaming clearly isn't as hard as it looks
11) When you don't consider to look in the most obvious place for the bad guy, that's most likely where he is...behind you.
12) Don't ever enter the dark creepy house on the street. Just don't. Don't even look at it.
13) Your creepy neighbour has an actual reason for being creepy...
14) Look under you car, and in the backseat before getting in.
15) Daylight no longer means 'everything will be ok'.
16) DON'T STOP AND ASK FOR DIRECTIONS JUST KEEP GOING AND NEVER SLOW DOWN.
17) Avoid small towns at all costs.
18) Don't talk to strangers. The rootword is 'strange' for a reason. Heed your mothers advice.
19) Resting is not an option.
20) Always, always look behind you, and never go in the water!
2) Wooden barriers between the outside world and the inside world are not efficient enough in keeping out the threat of a zombie invasion.
3) Running up the stairs is a bad idea...
4) But running down them will most likely result in getting you killed.
5) Contrary to popular beleifs, comforters and blankets do provide a legitimate protective shield against all-things scary.
6) Screaming and flailing will slow you down and get you caught.
7) There's never really an ending.
8) When a scary movie doesn't strike you as scary at the time, it will strike you as scary when you're alone, and in a dark place, with little to no light, and little chance of ever acheiving or locating an adequate light source.
9) Be in shape: there will be lots of running.
10) Running and screaming clearly isn't as hard as it looks
11) When you don't consider to look in the most obvious place for the bad guy, that's most likely where he is...behind you.
12) Don't ever enter the dark creepy house on the street. Just don't. Don't even look at it.
13) Your creepy neighbour has an actual reason for being creepy...
14) Look under you car, and in the backseat before getting in.
15) Daylight no longer means 'everything will be ok'.
16) DON'T STOP AND ASK FOR DIRECTIONS JUST KEEP GOING AND NEVER SLOW DOWN.
17) Avoid small towns at all costs.
18) Don't talk to strangers. The rootword is 'strange' for a reason. Heed your mothers advice.
19) Resting is not an option.
20) Always, always look behind you, and never go in the water!
21) DON'T stand in front of windows - ever. Tinted, night time, day time. Just don't. Crawl underneath them if you must - just don't walk directly in front of them. Also, those curtains are pulled across for a reason. Leave them the fuck alone.
22) Calling 911 is pretty pointless. If you locate a car that works, boot it and get the fuck out. Cops will not save you.
23) And the cardinal rule from Scream, "everybody's a suspect!"
And with that, I am greatly regretting the fact that i allowed my mother to wash my comforter before i go to bed....for tonight i lack my protective shield from all things scary.
Yup.
*blinks*
Saturday, August 1, 2009
Kind of don't wanna move - ever.
I’ve had a fulfilling last 2 days. While I haven’t done much by normal people standards, i’ve done quite a bit for someone in my situation – with 21% lung function.
The weather has been fab – it actually feels like summer around here and I love it.
Accomplishment #1: i’ve logged 20 hours in the sleep department since Friday, sleeping a solid 10 hours each night, straight through. Fell asleep Thurs night at 11:45-9:45 am, missed rehab. Thursday i galavanted around the city with Krystal tracking down a book for someone else. First was Macondo’s, who didn’t have it, so we went to Chapters and i located it. This took about 3 hours, and it was very hot. Not a lot of walking but it still exhausted me. I went to bed around 11:30 lastnight and woke up at 10am. Go me.
Today I woke up and promptly made peanut butter rice krispie squares (with chocolate melted on top!) b/c i’m having the girlies over for a girls night. I did dishes, showered, did meds, then cavorted with Jennana around the city. She had errands but i waited in the car. We went to K-town and I bought a book i’ve been ogling over for the last day. We came back to our city, ran a few more errands, and i am honest when i say i am fucking exhausted. I kind of don’t want to move for a very, very long time. Maybe not ever, maybe i will just melt into the couch and let it consume me instead. I’m ok with that.
I still have to make salsa and feed all the pets, who are doing their best to act like needy little bastards and bothering me to give them sustenance. 3 dogs – 2 who need meds -, 2 cats who get fed in the basement, then i must go UP stairs and do Tobi and la la la. The rest of the fam are at 2 separate weddings.
Then i pick up Jenna and Krystal and a bag of nachos.
Oh couch, consume me.
Maybe not, coz if you consume me i will be bored.
I am looking forward to a girls night!
Ok, must go feed pets. Their ability to annoy people to the utmost capacity is quite impressive.
**EDIT**
My dog just thew up his supper in the runner of the sliding door.
Wonderful. Oddly enough, I find myself marvelling at their shamelessness in consuming their own vomit. Disgusted however, when they turn it into a team effort...
The weather has been fab – it actually feels like summer around here and I love it.
Accomplishment #1: i’ve logged 20 hours in the sleep department since Friday, sleeping a solid 10 hours each night, straight through. Fell asleep Thurs night at 11:45-9:45 am, missed rehab. Thursday i galavanted around the city with Krystal tracking down a book for someone else. First was Macondo’s, who didn’t have it, so we went to Chapters and i located it. This took about 3 hours, and it was very hot. Not a lot of walking but it still exhausted me. I went to bed around 11:30 lastnight and woke up at 10am. Go me.
Today I woke up and promptly made peanut butter rice krispie squares (with chocolate melted on top!) b/c i’m having the girlies over for a girls night. I did dishes, showered, did meds, then cavorted with Jennana around the city. She had errands but i waited in the car. We went to K-town and I bought a book i’ve been ogling over for the last day. We came back to our city, ran a few more errands, and i am honest when i say i am fucking exhausted. I kind of don’t want to move for a very, very long time. Maybe not ever, maybe i will just melt into the couch and let it consume me instead. I’m ok with that.
I still have to make salsa and feed all the pets, who are doing their best to act like needy little bastards and bothering me to give them sustenance. 3 dogs – 2 who need meds -, 2 cats who get fed in the basement, then i must go UP stairs and do Tobi and la la la. The rest of the fam are at 2 separate weddings.
Then i pick up Jenna and Krystal and a bag of nachos.
Oh couch, consume me.
Maybe not, coz if you consume me i will be bored.
I am looking forward to a girls night!
Ok, must go feed pets. Their ability to annoy people to the utmost capacity is quite impressive.
**EDIT**
My dog just thew up his supper in the runner of the sliding door.
Wonderful. Oddly enough, I find myself marvelling at their shamelessness in consuming their own vomit. Disgusted however, when they turn it into a team effort...
Wednesday, July 29, 2009
Silence apparently IS golden
Since last night I have had 2 incidences where I've said something to someone in a joking manner and they didn't get it. Instead, it was turned into something horrible and left me feeling pretty shitty in the end. However, things have resolved themselves, bugs came out of ppl's asses, they lightened up, and there were hugs and kisses all around. This doesn't, however, mean that i have forgotten. Nor does that i takes away the fact that I won't forget that in my feeble attempt to joke with someone that it backfired erroniously and made me feel shitty.
But enough. What's done is done, all is mended. I have to let it go and stop dwelling and worrying if the person inherently hates me. Which they don't.
Today marks 15 months for me on the list. In celebration i went for PFTs with the results yeilding an all-time low of 21% in overall function. In litres my FEV1 is .6L.
Yes you read that right: POINT SIX....0.6L.
And somedays i feel like i have to justify why i cannot get off the couch; why i feel like dying when i walk to the car.....Hmmm....who woulda thunk it.
I think that's it. I saw many tx friends today and they're all lookin' stellar.
Hope you're well.
But enough. What's done is done, all is mended. I have to let it go and stop dwelling and worrying if the person inherently hates me. Which they don't.
Today marks 15 months for me on the list. In celebration i went for PFTs with the results yeilding an all-time low of 21% in overall function. In litres my FEV1 is .6L.
Yes you read that right: POINT SIX....0.6L.
And somedays i feel like i have to justify why i cannot get off the couch; why i feel like dying when i walk to the car.....Hmmm....who woulda thunk it.
I think that's it. I saw many tx friends today and they're all lookin' stellar.
Hope you're well.
Tuesday, July 28, 2009
Ca va? Is this any better?
Fuck. Is this any better? Does it look hard to read? i tried to get simple colours - you know me and my affinity for multiple colours!
But somehow it looks....not me.
*sigh*
Ideally, I would go for a nautical, mysterious, vintage look. Dark, yes, with some ornate looking stars or something. I dunno, something different, something me.
Other than the fact that i am chronically fucking around with the layout of my blog and seemingly unhappy with any result that comes from my futile efforts, I am ok. It's been humid so i have stayed put. I finished The Winter Rose on Friday and promptly cracked open The Physick Book of Deliverance Dane. I wish it were longer; i'm halfway through, and could most likely finish today or tomorrow. Tomorrow i am at TGH for PFTs and physio.
Then home to stay on the couch.
That's it.
But somehow it looks....not me.
*sigh*
Ideally, I would go for a nautical, mysterious, vintage look. Dark, yes, with some ornate looking stars or something. I dunno, something different, something me.
Other than the fact that i am chronically fucking around with the layout of my blog and seemingly unhappy with any result that comes from my futile efforts, I am ok. It's been humid so i have stayed put. I finished The Winter Rose on Friday and promptly cracked open The Physick Book of Deliverance Dane. I wish it were longer; i'm halfway through, and could most likely finish today or tomorrow. Tomorrow i am at TGH for PFTs and physio.
Then home to stay on the couch.
That's it.
Sunday, July 26, 2009
Midlife crisis
I beleive I am having a midlife crisis. Ever since Friday night or so.
I don't know if it's because it's been raining for the last week, and miserable-ish weather, that it's forced me to think, but i pinned myself down today and came to the realization that I am having a midlife crisis.
Yes. A midlife crisis at the age of 23. I may be the first, or I may not be.
It's not necessarily b/c of my health. Well, i guess my health is the main reason. I want to move out, I want to work, I want to go back to school, I want to feel better. Basically, I want to get on with my life, but my health is standing in my way. And unfortunately for me, there isn't a lot that I can do about that, except sit around and wait. Well, now that i've sat around on my ass for 15 months almost, i'm getting a little tired. I would like for things to progress so my life can begin and I can go on adventures and travel and find the love of my life and get married. You know?? It is frustrating.
I do not want to live at home forever. I do not want to be dependent on people forever. Most importantly, I wish I could be the same person all the time. This is another issue in my midlife crisis. I feel like who I am when I talk to people online is the real me: this fun-loving, crazy, wild person. But when i'm in person, i'm this docile, stagnant creature. Im not crazy, i don't run all over the place screaming. I sit and observe and I hate it more than you can know. And i know i'm like that b/c of my lungs. It's safer and easier for me to sit in one spot than it is to be constantly getting up and walking around and all that. I feel like i'm constantly apologizing to people for not being fun, even though they know my reasons. I need to smile more too. I do smile, but sometimes i guess not enough. I wish i could laugh out loud but getting thrown into the joys of a coughing fit can concern people. It's better to smile at jokes rather than laugh hysterically.
I wish things were different. When will they be different, I do not know. I hope, I pray, that things will change very soon, and that I can be my wild and crazy self again. I miss her. I like reading her things but it will be great when we can meet again and not be in this shell of illness anymore. It will be nice when illness doesn't separate my personality between MSN and real life.
I know tx is not without it's own battles, but to have the freedom to be - to be wild, crazy, fun-loving, and not just some written words, will be more amazing that I could ever know.
That concludes today's lecture. You are all dismissed.
I don't know if it's because it's been raining for the last week, and miserable-ish weather, that it's forced me to think, but i pinned myself down today and came to the realization that I am having a midlife crisis.
Yes. A midlife crisis at the age of 23. I may be the first, or I may not be.
It's not necessarily b/c of my health. Well, i guess my health is the main reason. I want to move out, I want to work, I want to go back to school, I want to feel better. Basically, I want to get on with my life, but my health is standing in my way. And unfortunately for me, there isn't a lot that I can do about that, except sit around and wait. Well, now that i've sat around on my ass for 15 months almost, i'm getting a little tired. I would like for things to progress so my life can begin and I can go on adventures and travel and find the love of my life and get married. You know?? It is frustrating.
I do not want to live at home forever. I do not want to be dependent on people forever. Most importantly, I wish I could be the same person all the time. This is another issue in my midlife crisis. I feel like who I am when I talk to people online is the real me: this fun-loving, crazy, wild person. But when i'm in person, i'm this docile, stagnant creature. Im not crazy, i don't run all over the place screaming. I sit and observe and I hate it more than you can know. And i know i'm like that b/c of my lungs. It's safer and easier for me to sit in one spot than it is to be constantly getting up and walking around and all that. I feel like i'm constantly apologizing to people for not being fun, even though they know my reasons. I need to smile more too. I do smile, but sometimes i guess not enough. I wish i could laugh out loud but getting thrown into the joys of a coughing fit can concern people. It's better to smile at jokes rather than laugh hysterically.
I wish things were different. When will they be different, I do not know. I hope, I pray, that things will change very soon, and that I can be my wild and crazy self again. I miss her. I like reading her things but it will be great when we can meet again and not be in this shell of illness anymore. It will be nice when illness doesn't separate my personality between MSN and real life.
I know tx is not without it's own battles, but to have the freedom to be - to be wild, crazy, fun-loving, and not just some written words, will be more amazing that I could ever know.
That concludes today's lecture. You are all dismissed.
Thursday, July 23, 2009
Public Embarassment sector
I have yet again, managed to embarass myself publically when surrounded by something i love: tea.
Yes people, I managed to embarass myself in a tea shop today.
My day started out fine: i woke, washed my face, did meds, got dressed, did some laundry, called in to confirm an appt, then i went to the pharmacy, ordered meds and handed in a prescription. It was a little past 10am and i had already accomplished much of what was on today's menu. As i was leaving the pharmacy I caught a glimpse of a new shop - The Wandering Scott. I really wanted to go in but i was half way down the street.
Then it hit me: TEA. OMG. BRITS HAVE THE BEST TEA.
I did a u-y and zoombed back to the shop, and essentially flung myself in the door like a sick cat. I was alone, there were no customers. I stood infront of a beautiful wall of tea: Twinings, Harrogate and someone, Prince Charles thing, and maybe Liptons, i'm not quite sure. Either way, the wall was radiating happiness, and i was radiating it back. I wanted something different...and this wall had blends that you can't find in the grocery stores here.
The lady who helped me was really nice. In her late 20's and from Scotland. We chatted a bit, and I think i certafiably embarassed myself for being too enthusiastic. It's one of those moments where you think you're fine at the time, but the minute you're out the door you begin to wonder if your enthusiasm weirded them out. And shouting: something tells me i wasn't really talking loudly but maybe somewhat shouting, instead of talking like a normal human being...
I think I spent 15-20 minutes debating between Scottish Breakfast and Afternoon Darjeeling. In the end i settled with the Darjeeling - since it's so prevalent in The Tea Rose!! I do love Irish Breakfast and English Breakfast and thought Scottish Breakfast would be similar, so the next time I go back i shall get that.
I will skip step number one and refrain from embarassing myself. God only knows that i will never live down whatever security footage there is of me in Chapters. I don't want to spread this plight into the Scottish shop - where i hope i have made a friend. Who knows, I may never be allowed back in there again soley based on the fact that I creeped out the owner with my enthusiasm.
Overall, I am happy.
Yes people, I managed to embarass myself in a tea shop today.
My day started out fine: i woke, washed my face, did meds, got dressed, did some laundry, called in to confirm an appt, then i went to the pharmacy, ordered meds and handed in a prescription. It was a little past 10am and i had already accomplished much of what was on today's menu. As i was leaving the pharmacy I caught a glimpse of a new shop - The Wandering Scott. I really wanted to go in but i was half way down the street.
Then it hit me: TEA. OMG. BRITS HAVE THE BEST TEA.
I did a u-y and zoombed back to the shop, and essentially flung myself in the door like a sick cat. I was alone, there were no customers. I stood infront of a beautiful wall of tea: Twinings, Harrogate and someone, Prince Charles thing, and maybe Liptons, i'm not quite sure. Either way, the wall was radiating happiness, and i was radiating it back. I wanted something different...and this wall had blends that you can't find in the grocery stores here.
The lady who helped me was really nice. In her late 20's and from Scotland. We chatted a bit, and I think i certafiably embarassed myself for being too enthusiastic. It's one of those moments where you think you're fine at the time, but the minute you're out the door you begin to wonder if your enthusiasm weirded them out. And shouting: something tells me i wasn't really talking loudly but maybe somewhat shouting, instead of talking like a normal human being...
I think I spent 15-20 minutes debating between Scottish Breakfast and Afternoon Darjeeling. In the end i settled with the Darjeeling - since it's so prevalent in The Tea Rose!! I do love Irish Breakfast and English Breakfast and thought Scottish Breakfast would be similar, so the next time I go back i shall get that.
I will skip step number one and refrain from embarassing myself. God only knows that i will never live down whatever security footage there is of me in Chapters. I don't want to spread this plight into the Scottish shop - where i hope i have made a friend. Who knows, I may never be allowed back in there again soley based on the fact that I creeped out the owner with my enthusiasm.
Overall, I am happy.
Saturday, July 18, 2009
Don't make fun of the 80's hair
I managed to ruin my mum's perfectly good mood today with one simple statement. It started when I told her that my friend and her family were getting family pics today.
It went like this:
Me: Jess and them are getting fam pics today.
Mum: Awwwwww good for them! Do they know what they are going to wear?
Me: No, but i could show her our family pic from when we were kids, and Ash and I had on the matching McDonalds outfits...
Mum: Those were so cute - they had matching skirts.
Me: It was before i was fat. It's funny, coz Ash and i had to stand on either side of you instead of behind you, b/c your hair was so big it would have blocked us out of the picture...
Mum: *silence*
Me: I'm kidding.
Mum: *silence*
Me: You have to admit that was pretty funny.
Mum: *silence*
Me: *walks away*
All in all it can be safe to say that if ever your day needs to be ruined, just come to me and i can find a way to do it. And i will succeed. I had meant it as a joke, but clearly my mum didn't see it that way. Maybe she doesn't understand, but when you're 4/5 years old, and your mums hair resembles a tangled bush, you cannot be expected to stand behind it or the person, and be assured that you will in fact, show up in the picture. As a result, we were shuttled onto either side of our mother (barely making it into the picture frame, having to also dodge shoulder pads), and all was well.
My mother, on the other hand, fails to see the humor in the situation. So i don't know what to do. Maybe some day...maybe.
Salsa night was good. Scary movie night was good too. I succeeded in scary myself at night, and Jess. When we were watching the special features, i pointed out to her that her basement door (directly across from her) was wide open, and dark, and scary, and probably harboured a demon or a spirit or a possessed doll or something. She asked me why i would say that, i said i didn't know.
I got home and the house was dark. The only thing i could remember was that the special feature featurette on the real ppl who experienced A Haunting in Conneticut, said that the alleged spirits attacked them when they were alone - defenseless and vulnerabe. I realized at that moment, that I too was alone, and defenseless, and vulnerable, and that i was standing in a dark house, and that i couldn't breathe right, and that in the event that i were ambushed by a ghost that it would probably kill me b/c i couldn't run away from it, or hide. Because it was dark, and I cannot breathe.
I ventured into the living room to turn my thing on. And i remembered the featurette (on post-mortem photography) saying that funerals used to be held at the the deceased person's home in the parlor, and that the parlor was essentially used for funerals. These funerals would go on for days to accomodate the throngs of people who would show up offering condolenses. But once funeral homes were established and more widely used, houses stopped being used to showcase funerals and the name parlor was abandoned, being replaced by 'living room' - a room for the living.
That also succeeded in scarying me.
I tried to forget that the ppl said that spirits attacked them when they were alone in the bathroom, so i got ready for bed with all the lights on and the door open, b/c then i wouldn't really be alone, b/c my actions would wake my sister up and i'd be free...
I think that's it.
80's hair, ghosts, all pretty scary.
It went like this:
Me: Jess and them are getting fam pics today.
Mum: Awwwwww good for them! Do they know what they are going to wear?
Me: No, but i could show her our family pic from when we were kids, and Ash and I had on the matching McDonalds outfits...
Mum: Those were so cute - they had matching skirts.
Me: It was before i was fat. It's funny, coz Ash and i had to stand on either side of you instead of behind you, b/c your hair was so big it would have blocked us out of the picture...
Mum: *silence*
Me: I'm kidding.
Mum: *silence*
Me: You have to admit that was pretty funny.
Mum: *silence*
Me: *walks away*
All in all it can be safe to say that if ever your day needs to be ruined, just come to me and i can find a way to do it. And i will succeed. I had meant it as a joke, but clearly my mum didn't see it that way. Maybe she doesn't understand, but when you're 4/5 years old, and your mums hair resembles a tangled bush, you cannot be expected to stand behind it or the person, and be assured that you will in fact, show up in the picture. As a result, we were shuttled onto either side of our mother (barely making it into the picture frame, having to also dodge shoulder pads), and all was well.
My mother, on the other hand, fails to see the humor in the situation. So i don't know what to do. Maybe some day...maybe.
Salsa night was good. Scary movie night was good too. I succeeded in scary myself at night, and Jess. When we were watching the special features, i pointed out to her that her basement door (directly across from her) was wide open, and dark, and scary, and probably harboured a demon or a spirit or a possessed doll or something. She asked me why i would say that, i said i didn't know.
I got home and the house was dark. The only thing i could remember was that the special feature featurette on the real ppl who experienced A Haunting in Conneticut, said that the alleged spirits attacked them when they were alone - defenseless and vulnerabe. I realized at that moment, that I too was alone, and defenseless, and vulnerable, and that i was standing in a dark house, and that i couldn't breathe right, and that in the event that i were ambushed by a ghost that it would probably kill me b/c i couldn't run away from it, or hide. Because it was dark, and I cannot breathe.
I ventured into the living room to turn my thing on. And i remembered the featurette (on post-mortem photography) saying that funerals used to be held at the the deceased person's home in the parlor, and that the parlor was essentially used for funerals. These funerals would go on for days to accomodate the throngs of people who would show up offering condolenses. But once funeral homes were established and more widely used, houses stopped being used to showcase funerals and the name parlor was abandoned, being replaced by 'living room' - a room for the living.
That also succeeded in scarying me.
I tried to forget that the ppl said that spirits attacked them when they were alone in the bathroom, so i got ready for bed with all the lights on and the door open, b/c then i wouldn't really be alone, b/c my actions would wake my sister up and i'd be free...
I think that's it.
80's hair, ghosts, all pretty scary.
Friday, July 17, 2009
Phlebotomist 101
I swept into the blood taking office today like a star. My appearances there are weekly and I have been going so frequently that they know me now. I just throw my healthcard and order thingy on the counter and sail into which ever blood taking room i desire, and sit down in the lazy boy.
I scanned the wall and all it's diagrams, noting which vial colours were for what. I could not locate the one for 'liver' but you'd think going every week and staring at the vials so often, that i would know, but no, i do not.
The lady came in and we chatted, and then she took my blood. I directed her where to go, she found a vein, i winced, blew out my breath slowly, and it was done.
"I think you'd be used to this by now," she said.
"I am, but the needle hurts; it's so big."
"Oh. Sorry..."
"It's ok, they always use Butterfly needles for me, or IV needles..."
It was then that I was struck with a startling realization: i was telling the blood taking lady which needle size i actually preferred. I HAVE A NEEDLE SIZE PREFERENCE. WHO HAS THAT? This is a sure sign that i spend more time in medical facitilities than anywhere else, if i can calmly dictate to the blood taking lady the barrel size i prefer, as well as the proper name for it, and not to mention that i can locate effective veins for her so i prevent myself from being stabbed repeatedly for no real reason.
So yes.
I saw Harry Potter lastnight. It was magnicifant. I cannot wait for the next one in 2010. It is too far away. Tonight: I make salsa with Jess. YIPPEE!!
I scanned the wall and all it's diagrams, noting which vial colours were for what. I could not locate the one for 'liver' but you'd think going every week and staring at the vials so often, that i would know, but no, i do not.
The lady came in and we chatted, and then she took my blood. I directed her where to go, she found a vein, i winced, blew out my breath slowly, and it was done.
"I think you'd be used to this by now," she said.
"I am, but the needle hurts; it's so big."
"Oh. Sorry..."
"It's ok, they always use Butterfly needles for me, or IV needles..."
It was then that I was struck with a startling realization: i was telling the blood taking lady which needle size i actually preferred. I HAVE A NEEDLE SIZE PREFERENCE. WHO HAS THAT? This is a sure sign that i spend more time in medical facitilities than anywhere else, if i can calmly dictate to the blood taking lady the barrel size i prefer, as well as the proper name for it, and not to mention that i can locate effective veins for her so i prevent myself from being stabbed repeatedly for no real reason.
This also reminds me of a facebook test i did today: What ICU med are you? Matt Todd got 'Versed" with Amy and I collecting "Vancomycin" as our drug of choice. Funny to us; sad to everyone else that we can correctly identify the meds without needing descriptions.
*sigh*So yes.
I saw Harry Potter lastnight. It was magnicifant. I cannot wait for the next one in 2010. It is too far away. Tonight: I make salsa with Jess. YIPPEE!!
Wednesday, July 15, 2009
A Whole New Wooooooooorld!
Well not really, more like, A WHOLE NEW LOOOOOOOOOOOOK!
As you can tell, I changed things around here again. I was getting bored and tired of the leaves. While I do like them, it was time for a change and i adopted a more summery vibe. I had to change the colours and such but it didn't take long at all - it was very cleansing!!!
What do you think? Yay or Nay? Maybe it's me but without the dark background, it seems less cluttered.
In other news, my co-ordinator called me up today confirming that my liver levels were probably elevated due to Vfends attempt to kill me. So we're gonna stick with Sporanox and get blood taken every week (boo) and see if things settle down. I hope they do. But i also hope that my tx comes along.
I think that's it. Not much to report. Hope you're all well!:)
As you can tell, I changed things around here again. I was getting bored and tired of the leaves. While I do like them, it was time for a change and i adopted a more summery vibe. I had to change the colours and such but it didn't take long at all - it was very cleansing!!!
What do you think? Yay or Nay? Maybe it's me but without the dark background, it seems less cluttered.
In other news, my co-ordinator called me up today confirming that my liver levels were probably elevated due to Vfends attempt to kill me. So we're gonna stick with Sporanox and get blood taken every week (boo) and see if things settle down. I hope they do. But i also hope that my tx comes along.
I think that's it. Not much to report. Hope you're all well!:)
Monday, July 13, 2009
Excuse me while I syringe up my Tobi...
I waltzed into the pharmacy today to pick up the dreaded Tobi. After giving myself a vacation from it since the end of April, I decided it was time to give it another go. I got to the counter and told them my name and the pharamcy lady person went to the back and got it, and soon presented me the big box of Tobi complete with icepacks since she forgot to put it in the fridge.
She sat it on the counter and decided to have a chat with me. A chat I soon learned, which was the result of yet another med dose change unbeknownst to me. Joy to the world.
*enter heavy European accent here* Tha doze, eet's changed.
Me: Yes?
Pharmacy lady: Eenstead of nebulizing 300mg per ampule, you only nebulize 2.6mL. See?
Me: What?
PL: You take a thrynge and go do tha 2.6mL mark, and desscard the rest of thee ampule. Do you follow?
Me: No.
*demonstrates* Like deese.
Me: Oh.
Pharmacy lady: Do nat forlget to poot theese in da fridge - it's vewwy expensive...over $3000.
Me: Yes.
She proceeded to tell me other things that I should do, but i was so confused and pissed off about this stupid thing that i stopped listening and got tunnel vision. The world swirled in front of my eyes. Anger reddened my vision. My pants were slipping off my waist and exposing my undies...I simply couldn't concentrate. I had to flee as fast as PeterPan and get the hell out.
WTF KINDA SHIT IS THAT?! SYRINGING UP 2.6 (SIX!?) mills of Tobi as opposed to using the whole thing? Throwing away more than half the full ampule? She informed me that it was over $3000, SO WHY THE HELL AM I GETTING RID OF HALF OF IT IF IT'S SO BLOODY EXPENSIVE?! EXCUSE ME WHILE I SHOOT SOMEONE!
I was pissed that yet again, my med dose had been changed without me knowing it. I wouldn't mind if when they wrote a new script, they informed me of it, then i wouldn't be so pissed. BUT LEAVING IT FOR ME TO FIND OUT WHEN I PICK THE SHIT UP AND RAISE HELL WITH THE PHARMACY PEOPLE?! WHAT THE FUCK PEOPLE?!?!?! AHHHHHHHHHHHHHHHHHHHHH
AND THEN! THEN! My co-ordinator calls me and informs me that my liver levels are elevated b/c of the Sporanox. YAY. FUCKING GREAT! Now what the fuck am i supposed to do? She asked me how bad i felt when I was on Vfend, and i think telling her that i pretty much thought I was dying was enough to convince her that I wouldn't be ok with being put back on it. Jesus Fuck people. She is calling me back tomorrow to inform me of what they're going to do about it.
AND THEN! THEN - there's more yes! I was going out and i dropped my phone in a bowl of water!
A BOWL OF FUCKING WATER!
And instead of swearing and screaming i just said, "OHHHHHHH!"
"OH!" people! Not "Oh fucking shit!", not, "OH ARMAGEDDON!", not, "OH HOLY NIGHT!" just "OH!" like I gave a shit but not quite enough. So later tonight i went with my mum and got a new phone (an early bday present) and i'm ectactic but i'm too frigging stupid and impatient to figure out all the ins and outs of this wonder. All i want to do is use it but alas i must learn the tricks of the trade.
I have lost all my contacts. I have lost my liver. I have lost my mind.
You'll excuse me, as I have to go draw up 2.6 mL of tobi like a diligent little child...
She sat it on the counter and decided to have a chat with me. A chat I soon learned, which was the result of yet another med dose change unbeknownst to me. Joy to the world.
*enter heavy European accent here* Tha doze, eet's changed.
Me: Yes?
Pharmacy lady: Eenstead of nebulizing 300mg per ampule, you only nebulize 2.6mL. See?
Me: What?
PL: You take a thrynge and go do tha 2.6mL mark, and desscard the rest of thee ampule. Do you follow?
Me: No.
*demonstrates* Like deese.
Me: Oh.
Pharmacy lady: Do nat forlget to poot theese in da fridge - it's vewwy expensive...over $3000.
Me: Yes.
She proceeded to tell me other things that I should do, but i was so confused and pissed off about this stupid thing that i stopped listening and got tunnel vision. The world swirled in front of my eyes. Anger reddened my vision. My pants were slipping off my waist and exposing my undies...I simply couldn't concentrate. I had to flee as fast as PeterPan and get the hell out.
WTF KINDA SHIT IS THAT?! SYRINGING UP 2.6 (SIX!?) mills of Tobi as opposed to using the whole thing? Throwing away more than half the full ampule? She informed me that it was over $3000, SO WHY THE HELL AM I GETTING RID OF HALF OF IT IF IT'S SO BLOODY EXPENSIVE?! EXCUSE ME WHILE I SHOOT SOMEONE!
I was pissed that yet again, my med dose had been changed without me knowing it. I wouldn't mind if when they wrote a new script, they informed me of it, then i wouldn't be so pissed. BUT LEAVING IT FOR ME TO FIND OUT WHEN I PICK THE SHIT UP AND RAISE HELL WITH THE PHARMACY PEOPLE?! WHAT THE FUCK PEOPLE?!?!?! AHHHHHHHHHHHHHHHHHHHHH
AND THEN! THEN! My co-ordinator calls me and informs me that my liver levels are elevated b/c of the Sporanox. YAY. FUCKING GREAT! Now what the fuck am i supposed to do? She asked me how bad i felt when I was on Vfend, and i think telling her that i pretty much thought I was dying was enough to convince her that I wouldn't be ok with being put back on it. Jesus Fuck people. She is calling me back tomorrow to inform me of what they're going to do about it.
AND THEN! THEN - there's more yes! I was going out and i dropped my phone in a bowl of water!
A BOWL OF FUCKING WATER!
And instead of swearing and screaming i just said, "OHHHHHHH!"
"OH!" people! Not "Oh fucking shit!", not, "OH ARMAGEDDON!", not, "OH HOLY NIGHT!" just "OH!" like I gave a shit but not quite enough. So later tonight i went with my mum and got a new phone (an early bday present) and i'm ectactic but i'm too frigging stupid and impatient to figure out all the ins and outs of this wonder. All i want to do is use it but alas i must learn the tricks of the trade.
I have lost all my contacts. I have lost my liver. I have lost my mind.
You'll excuse me, as I have to go draw up 2.6 mL of tobi like a diligent little child...
Thursday, July 9, 2009
Chapters: 2; Will Power: 0
In yet another sprawling turn of events, i somehow found myself in Chapters today. After a terribly upsetting day yesterday, i thought I'd just go and pick up one book and that would be it. I really thought i could hold myself together and not act like an embarassing fool. I felt strong, empowered, capable. I felt like I could handle it.
I entered Chapters and headed for the D section, and i began looking, but nothing really caught my eye like i had secretly hoped. So i wandered over the the K section and found "Galway Bay", since that is the book i went for. I flipped through, contemplating how badly i wanted it, when i began skimming the shelves. I knew i'd pick up Galway Bay anyways and figured there'd be no harm in browsing since thus far, i had held myself together.
And then i saw it...*enter epic fail here*. The Physick Book of Deliverance Dane, sparkling and brand new, but on the very top shelf. But even tho it was on the top shelf i knew i'd get it. I didn't even need to look when i saw it: a stool, placed directly below the book, waiting for me to use it. It fit perfectly, everything worked out. Up and up i descended, like a princess towards a handsome prince, beaming and excited. Music played behind my ears, shelves and people fell away and turned into blurry entities, time slowed down, and up and up i went, closer to euphoria and everything....!
Everything, and $70 later.
There is no guilt this time. No shame, no embarassment, no feelings like i've been used. No nothing. I have mended my untransplanted heart with books and that will heal my soul for now. I have about 10 brand new books to read, and...ugh. Yes. *sigh*
I'm making banana bread. The house smells lovely. I shall continue reading The Winter Rose since i just started it. I hope it gets more interesting.
Gah, books I love you. Transplant, i'd love you a little more if you hurried up!
Happy Thursday. Don't be ashamed of me.
I entered Chapters and headed for the D section, and i began looking, but nothing really caught my eye like i had secretly hoped. So i wandered over the the K section and found "Galway Bay", since that is the book i went for. I flipped through, contemplating how badly i wanted it, when i began skimming the shelves. I knew i'd pick up Galway Bay anyways and figured there'd be no harm in browsing since thus far, i had held myself together.
And then i saw it...*enter epic fail here*. The Physick Book of Deliverance Dane, sparkling and brand new, but on the very top shelf. But even tho it was on the top shelf i knew i'd get it. I didn't even need to look when i saw it: a stool, placed directly below the book, waiting for me to use it. It fit perfectly, everything worked out. Up and up i descended, like a princess towards a handsome prince, beaming and excited. Music played behind my ears, shelves and people fell away and turned into blurry entities, time slowed down, and up and up i went, closer to euphoria and everything....!
Everything, and $70 later.
There is no guilt this time. No shame, no embarassment, no feelings like i've been used. No nothing. I have mended my untransplanted heart with books and that will heal my soul for now. I have about 10 brand new books to read, and...ugh. Yes. *sigh*
I'm making banana bread. The house smells lovely. I shall continue reading The Winter Rose since i just started it. I hope it gets more interesting.
Gah, books I love you. Transplant, i'd love you a little more if you hurried up!
Happy Thursday. Don't be ashamed of me.
Wednesday, July 8, 2009
Un-Genuine
Since Canada Day, 2 more people in my circle of friends have gotten their txs. And while i am happy for them, i question the genuine-ness of it. I'm getting fed up. It seems like everyone around me is getting their tx's and i'm not even given a second thought. Everyone keeps telling me my time is coming but i'm finding it harder and harder to see any hope in that statement. People tell me "be strong, your time is coming" i kind of want to say "fuck you".
It's not easy waiting. If anything, it's getting harder. My patience for all things life is shrinking, and i feel like a horrible person for living in a state of misery. I feel like all my friends are getting their tickets out of this jail cell but me, b/c for some secret reason known only to the government, I am not allowed to be out in society, funcioning like a normal person. That kind of goodness apparently isn't the cards for me and that kind of goodness will never be bestowed upon me. Apparently, I have used up all my goodness and am not allowed to have any more. And in thinking that, i feel like i've wasted my life.
Maybe i'm just a miserable bitch. Maybe i don't deserve a transplant. Maybe i murdered someone in my last life and this is my punishment. Maybe i set something on fire in my last life. I dunno, but it must've been something horrible b/c i can't think of any punishment worse than this. Really.
I have to stop thinking. Someone, please take my brain away from me, it's making me think.
It's not easy waiting. If anything, it's getting harder. My patience for all things life is shrinking, and i feel like a horrible person for living in a state of misery. I feel like all my friends are getting their tickets out of this jail cell but me, b/c for some secret reason known only to the government, I am not allowed to be out in society, funcioning like a normal person. That kind of goodness apparently isn't the cards for me and that kind of goodness will never be bestowed upon me. Apparently, I have used up all my goodness and am not allowed to have any more. And in thinking that, i feel like i've wasted my life.
Maybe i'm just a miserable bitch. Maybe i don't deserve a transplant. Maybe i murdered someone in my last life and this is my punishment. Maybe i set something on fire in my last life. I dunno, but it must've been something horrible b/c i can't think of any punishment worse than this. Really.
I have to stop thinking. Someone, please take my brain away from me, it's making me think.
Sunday, July 5, 2009
Welcome Sporonox, Everyone
Well, after much calling, bitching and moaning, nausea, vomitting, disorientation, sleeping, daziness (is that a word?), i called up my co-ordinator, pleaded my case that Vfend hated me and was trying to kill me, and after much waiting, was switched back to Sporonox. HURRAY!
And after all the feelings of shittiness, it was my dear friend Katey who informed me that I was severely dehydrated from the med! The numb feeling i thought i felt in my face, was actually horrendous dry skin and lips. So i've been drinking nothing but water the last two days and consuming watermelon and the likes, and i feel soooooooooooo much better! Weds through Fri had to be the worst days: i had a hair appt Friday and felt so sick that I contemplated cancelling it, b/c my stomach felt terrible, i had a raging headache, and i was exhausted. So tired that i fell asleep AT the hairdressers! YES. Highly embarassing and hard to explain myself once i had woken up, but nonetheless, I am feeling a lot better!
Havent needed stomach-settling meds in a while. I'm not taken Gravol, it's something that starts with a "D" and is about ___________________ that long in length, no lie. I'm able to stay awake but i still sleep 10+ hours at night. I'm not as foggy in my head, and i feel safe to drive now! It was nice in a bizarre way b/c for the whole week that i was dying from Vfend, it took away the shittiness feeling in my lungs, but now that the rest of me is ready-set-spaghetti, les lungs are back to taking centre stage but what can you do? I can stand for more than 5 minutes now without collapsing so i won't complain!
No real word on Meghann or Carol. Last I heard, Megs was still pretty drugged but able to walk around. I havent gotten an update on Carol since my last post, and i posted what i knew!
So that's about it. I'm not exciting. I hope my call comes soon and i hope the weekend finds you well!
And after all the feelings of shittiness, it was my dear friend Katey who informed me that I was severely dehydrated from the med! The numb feeling i thought i felt in my face, was actually horrendous dry skin and lips. So i've been drinking nothing but water the last two days and consuming watermelon and the likes, and i feel soooooooooooo much better! Weds through Fri had to be the worst days: i had a hair appt Friday and felt so sick that I contemplated cancelling it, b/c my stomach felt terrible, i had a raging headache, and i was exhausted. So tired that i fell asleep AT the hairdressers! YES. Highly embarassing and hard to explain myself once i had woken up, but nonetheless, I am feeling a lot better!
Havent needed stomach-settling meds in a while. I'm not taken Gravol, it's something that starts with a "D" and is about ___________________ that long in length, no lie. I'm able to stay awake but i still sleep 10+ hours at night. I'm not as foggy in my head, and i feel safe to drive now! It was nice in a bizarre way b/c for the whole week that i was dying from Vfend, it took away the shittiness feeling in my lungs, but now that the rest of me is ready-set-spaghetti, les lungs are back to taking centre stage but what can you do? I can stand for more than 5 minutes now without collapsing so i won't complain!
No real word on Meghann or Carol. Last I heard, Megs was still pretty drugged but able to walk around. I havent gotten an update on Carol since my last post, and i posted what i knew!
So that's about it. I'm not exciting. I hope my call comes soon and i hope the weekend finds you well!
Wednesday, July 1, 2009
HAPPY CANADA DAY!
Today is Canada's 142nd birthday. Congrats to us! To celebrate, i'm hanging out with friends which is just what i need seeing as i feel horrible!
Seriously. I want off this Vfend. The side effects are not pleasant and i feel like i go through my day in a daze and somewhat disoriented. It's not fun. My whole body just feels weird. Not to mention the nausea. It totally puts you out of comission so i'll ring TGH up tomorrow and see if there's something else i can go on. I'm sure there is. I had to call yesterday to make sure it was okay for me to take Tylenol 2 while on Vfend. I was told it was ok, and last night, an hour after i took Vfend I took one T2 and went to bed.
It didn't help that earlier in the evening i had seen a special segment on the news about how people take too much acetominophen; how they tend to overdose or mix it other drugs, not knowing that it could harm them. So as I lay in bed, all i could think of is that i had taken a powerful antifungal and a powerful pain drug and i was suddenly worried that i might not wake up in the morning...
And then i couldn't feel my face. I'm sure it was because i was half-conscious/worrying about ODing on T2 and Vfend, but for a second, my face felt numb, and i continued to worry about that until 4 in the morning.
I woke up at 11am and now i feel like shit! Since i didn't get enough sleep and the coedine is probably still in my system, and i feel like i could vomit all over the place. I feel slightly disoriented and like a vampire and it's not pleasant.
I can feel my face people! MY FACE! It's so bizarre b/c i never pay attention to how my face feels, but now, even though i was told it was ok to take T2 with Vfend, i'm suddenly worried that if i doze off i won't wake up or my face will be paralyzed. And yeah....it's rediculous.
So tomorrow I will embark upon another phone call to TGH to inquire about putting me on something else.
HAPPY CANADA DAY!
**EDIT**
Well, suffice it to say that i'm feeling better! I went down for a much needed catnap and i feel a lot better! That won't stop me from ringing up TO tomorrow and bitching about this medication though!!
Seriously. I want off this Vfend. The side effects are not pleasant and i feel like i go through my day in a daze and somewhat disoriented. It's not fun. My whole body just feels weird. Not to mention the nausea. It totally puts you out of comission so i'll ring TGH up tomorrow and see if there's something else i can go on. I'm sure there is. I had to call yesterday to make sure it was okay for me to take Tylenol 2 while on Vfend. I was told it was ok, and last night, an hour after i took Vfend I took one T2 and went to bed.
It didn't help that earlier in the evening i had seen a special segment on the news about how people take too much acetominophen; how they tend to overdose or mix it other drugs, not knowing that it could harm them. So as I lay in bed, all i could think of is that i had taken a powerful antifungal and a powerful pain drug and i was suddenly worried that i might not wake up in the morning...
And then i couldn't feel my face. I'm sure it was because i was half-conscious/worrying about ODing on T2 and Vfend, but for a second, my face felt numb, and i continued to worry about that until 4 in the morning.
I woke up at 11am and now i feel like shit! Since i didn't get enough sleep and the coedine is probably still in my system, and i feel like i could vomit all over the place. I feel slightly disoriented and like a vampire and it's not pleasant.
I can feel my face people! MY FACE! It's so bizarre b/c i never pay attention to how my face feels, but now, even though i was told it was ok to take T2 with Vfend, i'm suddenly worried that if i doze off i won't wake up or my face will be paralyzed. And yeah....it's rediculous.
So tomorrow I will embark upon another phone call to TGH to inquire about putting me on something else.
HAPPY CANADA DAY!
**EDIT**
Well, suffice it to say that i'm feeling better! I went down for a much needed catnap and i feel a lot better! That won't stop me from ringing up TO tomorrow and bitching about this medication though!!
Monday, June 29, 2009
Just a short post!
Meghann's been taken off the vent! She was extubated today and i read on facebook that she immediately grabbed for her phone - so the woman's gotta be feeling well!!! Hopefully she'll continue to improve now that she doesn't have the wretched tube!
And in other happy news, my dear friend Carol (who got listed 2 days before me, and who was going to do tequila shots with me at the end of April to 'celebrate' being listed for a year) GOT HER LUNGS ON FRIDAY!!!!!!!!!!!!!!!!!!!!!!!!! She was off the vent in 2 days and if she can keep her O2 sats up overnight they will remove her to recovery!
WOO HOO!!!! I'm so so so sooooooo happy to hear all of this!!! Hopefully, I'm next!!
Happy Monday!
And in other happy news, my dear friend Carol (who got listed 2 days before me, and who was going to do tequila shots with me at the end of April to 'celebrate' being listed for a year) GOT HER LUNGS ON FRIDAY!!!!!!!!!!!!!!!!!!!!!!!!! She was off the vent in 2 days and if she can keep her O2 sats up overnight they will remove her to recovery!
WOO HOO!!!! I'm so so so sooooooo happy to hear all of this!!! Hopefully, I'm next!!
Happy Monday!
Sunday, June 28, 2009
I've decided
...to make a scrapbook.
Not just any scrapbook, oh no. Little known pointless fact: i've kept every letter i've gotten in the mail from TGH since the very first one arrived. Every letter, detailing tests, appts, procedures, meetings, when i would have my evaluation, the evaluation package, x-rays, have been kept in a dusty space between my floor lamp and my night table.
After tx I will need something else to do other than read I suppose...and why not scrapbook (ie. pick a safe way to not lose all my shit) my adventure, so far, 2 years in the making? I think it's a brilliant idea and one that i honestly thought myself entirely above! I've never ventured into the scrapbooking world, though i know some that have. It will be exciting, time consuming, and probably angering at some points. I have this blog, I have my written diary, i have lots of momentos of my time waiting. And now all that has to come is the finishing act: The Transplant.
....
...Oh, and the recovery, and all the pain, and the side effects of meds, and water retention, and wondering if i made the right decision to get a tx, worrying if i'll end up fat and unattractive, and then to party like a rockstar (albeit safely!) when time permits.
So yes. Scrapbooking -in my head- seems like a good idea. We shall see if i actually do it...
...or get someone else to do it for me since I tend to be lazy when it comes to that kinda stuff.
Um what else? Well, the Vfend is a little better. I determined that yesterday's adventures vomitting were the result of mixed drugs: septra + zithro+Vfend= bad idea = wretching, dry heaving, and throwing up your much waited for sandwich. I determined that a healthy stomach is a happy stomach and have moved taking Vfend one hour after eating instead of taking it on an empty one.
So yes, isn't my life exciting?
What is exciting is all the planning i'm allowing myself to do for my life post tx. My dad asked me this the other day, and i told him honestly that i just want to do basic things, that the big things would come later but in the beginning i would relish being able to do even the smallest of tasks: like waking up and being able to go to the market on Sunday; not spend hours doing inhaled meds and waiting for them to take effect and the likes.
I can't wait for when I'm able to go out and enjoy myself! When the time comes I will go insane! I don't care if it's even rolling around in the grass at midnight in the park across the city to celebrate; I'll walk home b/c I can. I'll dance like a mad-woman and relish the tiredness that will follow, and i'll stay up and watch the sunrise just because i'm able to.
And best of all, I'll dance barefoot with my friends under the moonlight, because there will be no reason not to.
:)
Not just any scrapbook, oh no. Little known pointless fact: i've kept every letter i've gotten in the mail from TGH since the very first one arrived. Every letter, detailing tests, appts, procedures, meetings, when i would have my evaluation, the evaluation package, x-rays, have been kept in a dusty space between my floor lamp and my night table.
After tx I will need something else to do other than read I suppose...and why not scrapbook (ie. pick a safe way to not lose all my shit) my adventure, so far, 2 years in the making? I think it's a brilliant idea and one that i honestly thought myself entirely above! I've never ventured into the scrapbooking world, though i know some that have. It will be exciting, time consuming, and probably angering at some points. I have this blog, I have my written diary, i have lots of momentos of my time waiting. And now all that has to come is the finishing act: The Transplant.
....
...Oh, and the recovery, and all the pain, and the side effects of meds, and water retention, and wondering if i made the right decision to get a tx, worrying if i'll end up fat and unattractive, and then to party like a rockstar (albeit safely!) when time permits.
So yes. Scrapbooking -in my head- seems like a good idea. We shall see if i actually do it...
...or get someone else to do it for me since I tend to be lazy when it comes to that kinda stuff.
Um what else? Well, the Vfend is a little better. I determined that yesterday's adventures vomitting were the result of mixed drugs: septra + zithro+Vfend= bad idea = wretching, dry heaving, and throwing up your much waited for sandwich. I determined that a healthy stomach is a happy stomach and have moved taking Vfend one hour after eating instead of taking it on an empty one.
So yes, isn't my life exciting?
What is exciting is all the planning i'm allowing myself to do for my life post tx. My dad asked me this the other day, and i told him honestly that i just want to do basic things, that the big things would come later but in the beginning i would relish being able to do even the smallest of tasks: like waking up and being able to go to the market on Sunday; not spend hours doing inhaled meds and waiting for them to take effect and the likes.
I can't wait for when I'm able to go out and enjoy myself! When the time comes I will go insane! I don't care if it's even rolling around in the grass at midnight in the park across the city to celebrate; I'll walk home b/c I can. I'll dance like a mad-woman and relish the tiredness that will follow, and i'll stay up and watch the sunrise just because i'm able to.
And best of all, I'll dance barefoot with my friends under the moonlight, because there will be no reason not to.
:)
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