Wednesday, July 29, 2009
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
But somehow it looks....not me.
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.
Monday, July 27, 2009
I clearly got sick of the background. It wasn't me. However, i havent found one that truley reflects me yet either.
I like the dark aspect, tho I am a happy person. However, having a light, happy blog just didn't feel like the look i was going through.
So if you've been reading this between 3-5pm, i'm sorry, i've been fucking around with the background and may continue to do so until i find something that strikes my fancy!
Sunday, July 26, 2009
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
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
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...
Me: I'm kidding.
Me: You have to admit that was pretty funny.
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
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."
"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*
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
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
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.
Pharmacy lady: Eenstead of nebulizing 300mg per ampule, you only nebulize 2.6mL. See?
PL: You take a thrynge and go do tha 2.6mL mark, and desscard the rest of thee ampule. Do you follow?
*demonstrates* Like deese.
Pharmacy lady: Do nat forlget to poot theese in da fridge - it's vewwy expensive...over $3000.
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
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
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
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
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!
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!!