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.
Thursday, July 9, 2009
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.
:)
Saturday, June 27, 2009
Side Effects
Contrary to popular beleifs, I am not impervious to suffering side effects from the copious amounts of meds i take.
Lesson #1 of the day: Vfend makes you violently ill.
The first indication that something wasn't right happened when i happily skipped out of the Ministry of Transportation office, after getting my liscence pic renewed. Why so happy? Well, you're not allowed to smile, and you can't show teeth either, but i managed to get away with a smirk!
So i skipped out of the office when i noticed that looking at brightness hurt. It hurt the way it does when you go to the eye docs and they dialate your pupils for 4 hours and you have to wear sunglasses. I thought it was just b/c it was really sunny. Silly me.
So i speed home, skip into the house, and the same dealio is going on. Only now, it's like in the winter when you've been glaring at snow, when you go into artificial light, things look funny. And it didn't go away. It was around this time that my stomach started feeling off...I had taken the med at 10:45, since you need to wait an hour before eating - and it was only 45 minutes after the fact. Within 20 minutes i couldn't look at shiney brightness; and within 45 i started vomitting all over the place.
Ok, so i exaggerate. I wasn't vomitting 'all over the place' but i threw up legitimately twice. And what sucks is that i have to be on this for 6 weeks. Since my stomach emptied itself of that poison Vfend (for our favourite star, aspergillus - am i spelling that right finally?), I was able to keep down the rest of my covetted sandwich and even some nuts.
GO NUTS WOOOO!
Um...
Megs is doing well! Still on the vent but she's doing well. She's using her phone apparently so that's good! If the woman can text that she's gotta be good. Hoping the vent is taken off and the tubes come out and she can put those new lungs to work and make me jealous!
I'm still not liking the diskus but w/e. What can you do. Lungs are feeling shitty but i'm chalking it up to the aspergillus trying to kill them and hopefully - if i can keep this Vfend down - it will work? B/c clearly 6 weeks of itraconozole/Sporonox, IV meds, and pred, did nothing. Can they give you Vfend through IV if you can't stop from perpetual vomitting? Hmm...I wonder. Yesterday i had my monthly IV. I think i made a record: 5 attempts at finding a vein. They could get the needle in but it wouldn't even flush. My veins suck. When oh when will I get a picc or something?
What else? Um...oh yes, I had a breakdown and bawled my eyes out on the toilet the other night. No, i wasn't going, but i had just stepped out of the shower. Showers always make me think - it's where i come up with most of my ideas for what to blog about if we're to be honest. So yes, i came out of the shower, and the feeling like i'd be on the list forever consumed me, and i crumbled like a pile of bricks and bawled and huffed and puffed in a wet towel until i had no more energy.
And I think that's it. Hope the Vfend fairs better with me tonight! I have a horror movie to watch!!
Lesson #1 of the day: Vfend makes you violently ill.
The first indication that something wasn't right happened when i happily skipped out of the Ministry of Transportation office, after getting my liscence pic renewed. Why so happy? Well, you're not allowed to smile, and you can't show teeth either, but i managed to get away with a smirk!
So i skipped out of the office when i noticed that looking at brightness hurt. It hurt the way it does when you go to the eye docs and they dialate your pupils for 4 hours and you have to wear sunglasses. I thought it was just b/c it was really sunny. Silly me.
So i speed home, skip into the house, and the same dealio is going on. Only now, it's like in the winter when you've been glaring at snow, when you go into artificial light, things look funny. And it didn't go away. It was around this time that my stomach started feeling off...I had taken the med at 10:45, since you need to wait an hour before eating - and it was only 45 minutes after the fact. Within 20 minutes i couldn't look at shiney brightness; and within 45 i started vomitting all over the place.
Ok, so i exaggerate. I wasn't vomitting 'all over the place' but i threw up legitimately twice. And what sucks is that i have to be on this for 6 weeks. Since my stomach emptied itself of that poison Vfend (for our favourite star, aspergillus - am i spelling that right finally?), I was able to keep down the rest of my covetted sandwich and even some nuts.
GO NUTS WOOOO!
Um...
Megs is doing well! Still on the vent but she's doing well. She's using her phone apparently so that's good! If the woman can text that she's gotta be good. Hoping the vent is taken off and the tubes come out and she can put those new lungs to work and make me jealous!
I'm still not liking the diskus but w/e. What can you do. Lungs are feeling shitty but i'm chalking it up to the aspergillus trying to kill them and hopefully - if i can keep this Vfend down - it will work? B/c clearly 6 weeks of itraconozole/Sporonox, IV meds, and pred, did nothing. Can they give you Vfend through IV if you can't stop from perpetual vomitting? Hmm...I wonder. Yesterday i had my monthly IV. I think i made a record: 5 attempts at finding a vein. They could get the needle in but it wouldn't even flush. My veins suck. When oh when will I get a picc or something?
What else? Um...oh yes, I had a breakdown and bawled my eyes out on the toilet the other night. No, i wasn't going, but i had just stepped out of the shower. Showers always make me think - it's where i come up with most of my ideas for what to blog about if we're to be honest. So yes, i came out of the shower, and the feeling like i'd be on the list forever consumed me, and i crumbled like a pile of bricks and bawled and huffed and puffed in a wet towel until i had no more energy.
And I think that's it. Hope the Vfend fairs better with me tonight! I have a horror movie to watch!!
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