Sunday, June 29, 2008
Today was good. I lazed around reading my book, getting lost in the 18th century lives of Claire Beauchamp and Jamie MacTavish. I cannot wait for this book to get dirty. Fucking let it happen already. I'm sick of reading of middle aged castle shit. I'm sorry, but it's true. Still...I cannot wait to read the entire series. While i was reading I also baked Banana Bread/Loaf. It's fantabulous. As well, since I'm a multitasker, I watched Jurassic Park on TV. Actually, I watched 7 straight hours of Jurassic Park goodness b/c they should the first one and the second. Go me.
My sister scored a new, free Blackberry by trading in her own phone. She walked away with it w/o paying a cent (save for the warranty and something else) and only has to pay $60 for like a year or something. I don't know if that's a good deal or not. Math was never my forte. It never will be. This is why I don't do deals. I admit that i'm insanely jealous. While there's nothing wrong with my phone, little sister can't help but feel left out. I felt especially so when my mum and sis were comparing their Blackberry's tongiht, and at one point i felt like I was caught in the middle of some underground mission when my sister began speaking slowly and quietly into her phone as my mum walked throughout the house seeing if she could hear her. I felt like a spy overhearing something i've been sent to find; better yet, i felt like a child listening in on a naughty conversation. It was real; I wondered if it wasn't.
What else? Yesterday I undertook the huge task of cleaning my room. I had the grand idea that i'd put my clothes away, then dust, then vaccume. It was funny and it seemed like the plan would be executed, until i bent over to pick up the End-Dust and got incredibly dizzy and out of breath.
Mission only partially completed. Needed much oxygen, many breaks, and no vaccuming.
Oh well..it's only temporary. My time will come soon enough.
That's it for now peeps. Hope you're well!
Friday, June 27, 2008
Today I went and got my regular IV's. Two pokes and that was it. Arms are a bit sore but that's nothing new. Didn't need to pay for parking b/c my pass for rehab works at this hosp too - wee!
Have begun reading a new book called Outlander by Diana Gabledon. So far it's fantastic. Katey recommended it to me and it's an entire series, so i am looking forward to getting completely lost in it over the summer.
That's it for now. I will update when something interesting happens. Which it prob won't. Oh well.
Monday, June 23, 2008
A heavy little SOB he is, he fits nicely in my cart and did wonders for me today at rehab, as I didn’t have to stress myself out lugging around a big O2 tank over my shoulder. I’m very happy with the cart and with him. So far he’s doing well. I am actually still wearing the O2 as I am having trouble breathing today. Aye to humidity.
I had to pull over on my way to rehab this aft, as it was pouring rain so hard that there was 0 visibility. Had I not stopped and driven a mere 10 feet more, I would have gotten out of the rain band and been fine. All afternoon we’ve had heavy downpours, there are severe thunderstorm warnings out everywhere, so it’s better to just stay inside. The sky looks like it’s filled with freshly popped popcorn actually, but the sudden violent downpours are quite shocking. I’m glad the Red Rocket made it through!
Since the weather’s been pretty iffy the last couple of days, there was a tornado in London last nigh, one in TO today, it’s all people are talking about (I admit as Canadians talk about the weather a lot b/c ours changes all the time). As a result, this prompted the people who run rehab to discuss having a tornado drill. Lori, the rehab lady, suggested that we should cram into a bathroom ‘or something’, and an old man who attends rehab (he must be about 85) suggested that instead, “Let’s just stand at the windows so when the storm breaks them we can get the hell out.” It was pretty hysterical how he said it, and I’ve laughing about it ever since.
Rehab was good today, the usual, saw Bob, Carol, and everyone else. Bob and I discussed how much we hate the stairs, and at one point I had been standing at them for so long that Bob looked over at me and I finally said, “Well…I guess I should tackle this son of a bitch” and he started to laugh, which made me feel slightly bad b/c he had just caught his breath.
I feel pretty disgusted (mildly) with myself lately. Last night I was inspired by my friend Jess to buy some Sour Patch Kids, so I did, and I ate them all. What seemed like a good idea at the time has proven to not be such a good idea anymore. To make matters worse, I’m currently snacking on nachos and dip with lemonade that has iced tea in it. I should probably stop eating like this at some point….
Maybe now….now that I’ve just dropped a chunk of salsa on my carpet.
Thursday, June 19, 2008
The old portable liquid tank (pulse ox), lasted about 5.5 hours. A wine bottle is taller than it.
The new tank. It's heavy, but I have a cart for it.
The liquid oxygen tank that lives in my garage (appologies for the utter messiness). Beside it is the portable liquid tank in it's fancy cart. Charming isn't it?
Wednesday, June 18, 2008
Alone, but with a friend, about everything....life, it sucks, people suck.
I'm just tired of this lung tx shit....i'm tired and mad that other ppl's lives are going on when mine's on hold. I'm mad that this has happened to me.
I'm mad that people are gloating about getting their stupid fucking jobs and i'm mad that i can't work; i'm mad that people know what they want to do in life and that i feel like i'm at a dead end. I'm mad that some people make me feel like this is my own fault sometimes when i know it's not their intention.
The only way out of this crappy situation is to get new lungs, and i can't just wish for that to happen. I hate that i'm waiting for someone to die.
What am i gonna keep doing? Sit at home while the world goes on, and my friends graduate and get jobs? It's depressing when i see people who have been waiting for lungs for 2 years. I feel hopeless.
I got really upset when my mum hired someone in her office: our neighbour, and I can't be upset b/c i'm in no condition to work....but had I had - had i been - it might just be me, and instead i'm going poor. Everyone talks and talks and talks about their fucking job, where i get excited b/c i'm getting a new portable oxygen tank that has continuous flow. I told my dad and he goes, "there's always something wrong." I know he didn't say it to me to be mean or make me feel bad...he says it out of worry and i know it's not personal, but i can't help but feel that way, it sucks, and half the time I don't think people consider how this all affects me, like it's all fine and fucking dandy.
Well it's not. I can't get upset that my people have jobs, i'm happy for them, but I feel like if i ever mention that i feel unwell, then all of a sudden i'm always negative; and when i tell people i'm 'fine', they say they know i'm not and it's essentially BS.
Fuck people sometimes.
Fuck everyone and fuck it all.
Why did this have to happen?
Why did this have to happen at all?
Anyways, I bitched and moaned to a friend, who gave me her crappy day and her fears, and it put it all into perspective. While our situations are vastly different, I came to this conclusion: we're all fucked.
Life is just a giant waiting room and we're all waiting to get shit on.
Tuesday, June 17, 2008
I woke up finally around 9:20, and spent the next 4-5 hours sitting on the couch in my jammies, browsing the net. I baked 6 dozen soft and chewy chocolate chip cookies (they're surprisingly good - though they look a little strange and not quite round) they were soft and chewy and good. I've been wearing my O2 all day long, and I feel surprising better with it on. Lord knows i baked a little faster wearing it, and was spared horrible chest pains as I putted about the kitchen. I did wake up with a terrible pain in the left side of my chest - a frequent occurance, most likely a plug, or ... something. When i took my o2 off, the pain seared back; when i put the O2 on, it dissipated some. So the verdict came in and I've decided that wearing o2 all day is the best option for me today - and that's cool (esp. since I'm incredibly short of breath today).
When I had decided that I'd been sitting on my arse long enough, I did cleaned up my baking mess, did the dishes, and then I did the garbage (to help out my dad). A lot of people wonder why I do so much, how I have the energy to do so much, and the honest answer is that I don't; I do it b/c people at home do so much for me, that I feel like a useless waif sitting down all day doing nothing. If doing a small (though rather large task for me) task for my family helps out, then I'll do it. Sure it takes me a while, but it's not like I have anything else to do really. It makes me feel like I've contributed some how, and I don't mind. I discovered that I feel better if i wear my O2 while I do these things, and even though I get horribly out of breath, I still do it.
I admit, I felt a lot of frustration today while wearing my O2. I get pissed off and irritated when it gets caught underneath the corner of the fridge, or pinched underneath a door, or it pulls and hurts me ears. I found myself yelling "FUCK!" a lot today, but it's ok I guess. My biggest problem is that I don't know when to slow down, to pace myself, and I end up going faster than my little lungs are able to and I get extremely out of breath, frustrated, and anxious. My parents always tell me that this 'isn't a race', and that it's ok to slow down....but it's hard to.
When I had completed my little chores I hauled myself up the stairs, caught my breathe after 10 minutes, and had a nice warm shower, and it felt good. Today is a cool day - i think it's only 12...which is about 20 degrees colder than it's been lately, but in all honestly, I don't mind; i love it. It's nice to have a cool, glum, rainy day where you don't feel guilty for holing up in the house in your comfy sweatpants and oversized uni sweater (and a tea!). I have the windows open b/c it's raining and i love to listen to it.
Despite everything (and the scariness), it's been a good day.
Monday, June 16, 2008
Is that completely horrible of me? Am i such a horrible person that i'm getting bored of the very thing I fought so long to get into? Maybe i'm not bored per se....just 'bored' in the sense that i'm finding it repetitive. Aye. This bordom however is not enough to make me stop going to rehab - lord knows i never would...maybe i'm just tired of the activities.
So what is it I do, you ask? Well...here's the run down:
- resting O2 sats (5 minutes)
- walk to the doors and back (1x)
- arm circles (10x)
- high stepping (10 x)
- bike 20 minutes (i'm finding i need to take breaks every 5 minutes, so i go 5,5,5,5). My speed is lower too. Today my heart went over 180 beats per minute and over 200. Not good
- 1/4 squats with 2lbs weights (10x)
- chest expansion (10x)
- side bending, overhead stretching (10x each)
- 2lbs arm curls (10x); 2lbs tricep curls (10x)
- leg weights, 2lbs
- abduction (10x each leg)
- excision (10x each leg)
- quad stretch(10x each leg)
- and some more (10x each leg)
- calf stretch, each leg hold 15 seconds, (10x each)
- box step, 2 steps, (10x)
- treadmill, 20 minutes
- walk 1 time to doors
- deep breathing 5 minutes
- check resting sats
WEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!! So that's what i do at rehab Mon, Weds, and Fri. It takes me about an hour and a half now. When i first started it took about 2 hours, so I've got it down a little bit. So it is quite the workout, and i'm very thankful that i'm actually getting to do this so I can get in and sustain the best shape possible for transplant. The whole purpose of rehab is to stay in the best physical shape possible to maximize recovery time and also lessen the amount of muscle you lose immediately post tx. I know it will pay off.
Someone I go to rehab with, Bob (who's been listed since the end of Jan) got a call last Tues! Unfortunately it was a false alarm, but a call nonetheless which means he's closer to the top of the list now! I'm afraid of false alarms to be honest (is it safe to admit that?) I'm afriad b/c I'm smaller than the average bear, and what if it takes them eons to find another match?? I know it's a reasonable fear but a fear nonetheless. I guess I won't know until the last minute.
Friday when I was on the deck, I heard a hissing sound. I thought it was a snake. It wasn't a sound i had ever heard outside before (I don't think), so I was pretty scared when I in fact heard it. I listened more closely and still it came, so I went onto the grass, barefoot, to investigate this potential snake. Not a wise idea one would guess....investigating a potential snake while barefoot, but i did it, and I found nothing....but i still heard the hissing and was convinced there was something a miss.
Today when i was putting my make up on (you still need to look pretty regardless of if you're waiting for a tx - at least to me, it makes me feel normal!), I heard the hissing again. Was the snake in the wall?!? Did the snake follow me and find me in my bed room? I stopped everything I was doing. I stopped and stood still and I listened, and then I heard it...
It was me.
ME DAMNITT ME!!!!!!!!!!!! *falls to the floor dramatically and cries*
I sound like a hissing snake! A bloody hissing snake!!! It brought back memories to the winter when i was convinced there were mice fighting in the wall....and upon closer inspection it turned out that the copious amounts of squeaking was actually me! Me and my squeaky lungs!!!
My squeaky, hissing lungs!
There is nothing I can do. I have to accept that. The squeaking/hissing won't go away until new lungs come and for now all i can do are my treatments like a good lady and ignore the sounds.
Lungs, come soon (please!)
Saturday, June 14, 2008
I was outside with my mum and dad 5 minutes ago, watching the fish in the pond and the like. Upon coming onto the deck i noted the citrenella candle that i had lit was still burning. I tried blowing it out to no avail.
I turned to my dad and said, "You'll have to blow the candle out...; I can't do it."
It was quick and said without thought, as if saying something as common as 'It's hot out today.' And while it's true that I can't blow candles out, it makes me sad to think that as of now, in this very moment, my inability to blow out something as fragile as a candle is not some huge secret - everybody knows, and it's a part of who I am. It's sad and it shouldn't be this way...but for now, it is.
Earlier a friend said something about laughter. I told him that I don't laugh anymore - havent in years, at least not out loud, b/c laughing out loud sends me into coughing fits and i'd rather avoid them and the only way to avoid a coughing fit is to just not laugh at things. Instead, smile and wish you were somewhere else.
Little things like laughter and blowing out candles are things I'm looking forward to.
Hopefully soon, my friends. Hopefully soon.
I had a dream this morning that I was suffocating. I think I had two actually. In the first one, people were sitting on me and I felt like I was suffocating, and no matter how much i pleaded and screamed, no one got off me. Each time i yelled for the people to "GET OFF" it took all the air out of me, but I kept screaming and screaming and finally I woke up and was able to breathe. I had another one...something about needing to take my Advair (i think...maybe this was an actual thought though) and it was scary. These dreams where i can't breathe/am suffocating are very real, especially today b/c I think i actually was suffocating. I'm pretty sure i was on my stomach with my face smooshed into my pillow...and even with O2 jammed up my nose i was still suffocating. It's a scary feeling. You feel hollow b/c no matter how much you inhale, there's nothing to be taken in.
I remember last spring I had dreams like this (like when i fell through ice and sank to the bottom). This was the first sign that my lungs were dying. I was on Advair 150 and Advair lasts 12 hours. I'd wake up at 5am feeling like I was suffocating and would have to take a puff, and with ventolin (the blue puffer) and it still wouldn't help. I eventually went to the doc and was put on Advair 250 which helped muchly, but when I have dreams like this, it frightens me. I hate the way my mind only alerts me that something is amiss when i'm dreaming! Oh well.
This was almost 2 hours ago...and I still taken my Advair yet. I'm also starving but am too lazy to make food.
Today Beka and Sean get back from their honeymoon. I can't beleive they've been married two weeks. Tara was asking me how long weddings go, and then how long receptions go, and blah blah, and I told her it depended on the denomination but it wouldn't matter as long as she went with someone. Weddings are always funner when you go with someone, b/c then you have someone to sit with...unlike myself who went solo and sat at the table with waifs and strays...
Friday, June 13, 2008
Today is Friday the 13th, which means that motorcycle people from all over North America ride their bikes to Port Dover, Ontario (or cross the border into Ontario and up to Port Dover) and i guess they just hang out...or something. On my way to rehab today, I saw about 1000 motorcycle people headed to Port Dover as they always do....and I always seem to forget that this is what they do whenever there is a Friday the 13th.
I almost slept in for rehab today. Had my sister not called the house on her way to work at 7:45am to tell my mum she'd forgotten her belt, I probably never would have woken from my slumber. But i did...with rehab starting at 8:30, and today I got everything done at rehab even though it was only open from 8:30-10am! WEEEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I am exhausted today...not feeling well, and have eaten all too many gummy bears. I had soup for supper, came home from Chantels, and had some more gummy bears. I'm probably rotting.
The last 2 days i've been wearing my O2 a lot more during the day when I'm alone. I feel slightly better with in on, with less dizzy spells and less random jolts of pain to the chest as I often experience. I also came to the realization I need to say "bye bye" to my tiny portable O2 and get a bigger liquid O2 and a cart...b/c the tiny one is Pulse Ox (will explain in a few sentences) and the bigger ones are continuous flow. When i got to rehab today and took my resting sats (oxygen saturations in the blood after resting), they were 82% - ON PULSE OX! TERRIBLE! (normal is between 98-100%; low is considered anything under 98%...and I lie between the high 80's and low 90's...so a reading of 82% WITH O2 is terrible)
Continuous oxygen is similar to having a concentrator (the big Monster you use at night...which takes surrounding air and turns it into O2 and sends it to you via cannula). With portable O2, you can have it in gas forms..which comes in tank, or liquid form, which you can fill yourself repeatedly. Liquid O2 lasts longer and is more efficient. Continuous flow means that oxygen is always coming out of the cannula...it doesn't stop unless it is turned off or runs out.
PulseOx is used to conserve oxygen. Like the name, the oxygen is delivered through the cannula when the person inhales - hence the term 'pulse'.) This is fine and dandy if you're sitting down and you don't need the continuous flow of O2...but when you're walking around, and your lungs are getting shitty like mine and your body's demand for O2 is sky high, PulseOx becomes a bad idea...So needless to say I will have to call the oxygen company on Monday to see if they can deliver regular portable liquid O2 to me. I feel almost bad having to do it, since it took them so long to find me the tiny one...but if i feel like i'm suffocating when i wear it, that's pretty bad.
Before they take it away from me I will get a picture for you lot, but you must know that I am incredibly lazy so it could take a while.
In a sense, I'm almost sad to see it go.:(
Thursday, June 12, 2008
So while I'm going out tonight, I'm not getting pissed drunk. With my luck I would, and I'd get the call, and end up being too inebriated to function and ultimately get my transplant. And i'd be too mad at myself to forgive me...but i guess if that ever happened, i would be too drunk to even remember something like that had happened!
Upon thinking lastnight - as I often do - a list of dates ran through my head that reminded me just how long this pre-tx journey has actually been. Pre-tx does not begin the moment you get listed; it begins the day and time you find out you need one.
End of January 2007: my lung doc casually mentions methods of treatments to me, and ends my appt with saying, "...and in the future....lung transplant" and promptly gets up off her chair and flies out of the room. I get to my car and cry and pound the steering wheel.
April 2007: feeling shoddy, during a routine PFT test, I know it hasn't gone well. Upset, crying, and breathless, the tech looks at me and asks, point blank, "are you listed?", which I reply "for a transplant?" to, which she states, "yes" to which i answer, "no", and ends with her informing me that "you should be". Appt. ends with me crying hysterically, alone, on a ward that's under construction and I keep getting lost, coming back to the tech and asking how the hell to get off the floor. I find the elevator, go for an xray, crying uncontrollably during it, lose a hair pin, and go for my IV, where i spent the next 24 hours crying straight b/c life as i knew it was ending.
May 2007: go to check up appt with pulmo, who informed me that my last PFT was 27% and that i should get evaluated for a transplant. I look at her and ask, "Umm.....what. the fuck?" and luckily this time I came with my dad who asked questions. We found out i needed a double lung tx, and that my dad couldn't be a living donor b/c as i pointed out, like a heartless child, dad's lungs are 'too big.'
June 2007: Begin O2 at night.
July 7, 2007: Spend a night in the god awful Sleep Lab.
July 2007: letter arrives from TGH announcing when my consult would be.
Sept 25, 2007: consult at TGH. Blow 29% at PFTs, am told i can go ahead and get evaluated and that i'd make a great tx candidate who would have an 'amazing outcome.'
Dec 17-22, 2007: Transplant Evaluation occurs.
End of Jan. 2008 (a year!): get call from tx center; am 'a little early' to be listed, come back in 2-3 months. Heavy hearted...still hopeful.
Feb 2008: Get sick with Asperguillis.
March 2008: go for PFTs and re-checkup. Ask if i want to be listed 'now, or after school?' to which i reply, "after" (school would be done in 2 weeks!)
April 15: go back and tell doc i want to be listed.
April: Get pager.
April 29th, 2008: GET LISTED.
Which brings me to today...a month and a half after being listed.....I am hopeful that the call will come soon and I will be breathing normally in no time!
One thing I have noticed over this year and a half long journey is that my pulmonologist/respirologist seems to like me a lot more now that i'm compliant. Who knew!
Wednesday, June 11, 2008
The second time i dropped it in the parking lot of a flower shop on Mother's Day. I dropped it on my toe and still have a mark from it.
Today I dropped it when i was squatting in an aisle in Shoppers when i was scoping out their tea selection.
Then, when I got to the parking lot, it fell from my hand again and bounced under my car.
So it seems that my pager would rather live on the floor of a parking lot then suspended in my hand or strapped to myself.
Surprisingly, it hasn't smashed open yet, despite my carelessness with it. Barry, a man who's listed at my center, dropped his once over the weekend and it broke in two and stopped working. It's got tape all over it holding it together.
You can't tell mine's been dropped 4 times. I could drop it from space and i bet it would land softly on a pile of sheeps wool. I guess I'm lucky.
Today was gorgeous and i had all the windows opened. I had a great night watching So You Think You Can Dance with the fam jam and that was good too. I wanted to make chocolate chip cookies but some FUCK either ate all the chocolate chips or lost them so I couldn't fullfil my duty as the Baking Witch.
I vaccumed today. It took me eons and i took many breaks but i did it. I only ever vaccume the main floor and havent done it in ages, but i just get tired of feeling so fucking useless. Doing laundry, and dishes, and running the dishwasher can only make you feel so good about yourself on a regular basis. Yeah i get tired and SOB doing this shit but i just hate feeling like everyone in my house does something and i do nothing b/c i'm useless. You know?
And about the gastic test the other day where i had to lie perfectly still: i was propped up, not flat on my back. Lord knows if i was flat i would've coughed and choked and died on my own phelgm. And that would be incredibly crappy and not cool/
I'm done TOBI now....tho I missed a couple of times (not in a row) b/c i wasn't here (like being at a WEDDING) so i may do those. I've been done Tobi roughly 1-2 days and i'm getting phelgmy/sick/whatever the hell it was i had before again. So we'll see. I'm done Cipro tomorrow so after that it will be a waiting game.
As it is.
That's about it for now....I think.
Monday, June 9, 2008
I admit though as I waited in line to pay for it, i started thinking about the 490 calorie content of this lunch...esp. since the person being rung through in front of me was buying things like pineapple, strawberries, various veggies...all non fattening and then there was me....a blob. Oh well.
So this test, you wonder....that i did...what did it consist of? Well the guy was a little creepy and called me Bree out of no where...which lead me to suspect that he has read this blog perhaps b/c i am not listed as Bree in the hosp system. Instead of eating an egg, i drank apple juice with iodine and i admit you couldn't even tell it was there. I said it would have been more effective to down this as if it were shots but i guess that's just not appropriate to be saying. I asked why some ppl eat eggs and why others have liquid, and he said it depended on if u were ordered a solid or liquid test. I got a liquid test...even though the sheet i got said it was a solid. Oh well.
So i drank the apple iodine juice and was instructed to lay perfectly still. In one spot. For an hour. No moving. Nothing. Not to itch; not to scratch. Not to cough, not to nothing. Still.
Like a rock.
I was asked if i had to go to the bathroom. I said no which was a partial lie. I was put on wall O2 and I was told that if i wanted to, i could sleep during the test so i drifted in an out of sleep.
When i woke up my hair was all spastic like, and it's not as if i could have moved to fix it b/c i wasn't allowed. I wasn't allowed to move b/c for that hour there is this giant thing over me (presumably a giant camera disguised as a giant magnet?) that takes pics of my stomach every couple of seconds and traces the iodine to see how i digest. Clever, yes?
So once the test was complete I was free to go. So i left and got a donut, and went to rehab. It's another scortcher out so i couldn't really walk to the bus stop from the hosp, so i got a cab to take me. He prob thinks i'm lazy but the oxygen should have told him that i have issues with breathing I would hope. It's 35 and feels like 41*C so needless to say when i finally got back home and to my car, it felt like there was a fire set somewhere inside of it. The steering wheel burned, my seat was hot, my seatbelt even hotter, and i couldn't get the windows down fast enough. It was great. I love this weather.
The sky is magnificant today...the clouds are ginormous and we have warnings galore out. That reminds me i need to move my mum's hanging plant b/c when it storms it's supposed to be windy (70-140 km/h winds apparently...insane!) and i'm sure she'll be a little pissed if they blow away.
That's about it really. I heard that at TO on Friday, someone in the rehab room got their call. I wonder who it is. I hope it was Amy who got it....she's been waiting since March for her second tx. She's a nice girl. I hope i get my call soon too.
Anyways, I'm off to scratch my 20 or so mosquito bites. I don't know why i have so many but each day I find a new one in a new spot that i thought a mosquito possibly couldn't find. Krystal asked me why i had so many, and my only guess is that they like the taste of sickly people.Anyways, have a good one!
Sunday, June 8, 2008
And what does this test consist of that requires me to get up during sleep hours, you ask?
EATING A FUCKING EGG WITH IODINE IN IT!
That's about it. It's been a hot weekend and i need to get to bed.
There are tornado warnings out anyways.
Friday, June 6, 2008
It feels like hell outside it's so hot. The air must be 1000% humidity and 0% air. It's sweltering and if you stand in the sun you'll prob go up in flames, but i completely love it.
Welp by now you all know that Krys to the tal is back from Icey-Land and that we're all ectatic and all that. Last night we all went over to Krystal and Tara's and ate ate ate and got silly silly silly. It was a goreous night out and we spent about 2 hours outside watching a lightning storm. I made several failed attempts to get pics of the lightning but it never happened. My camera hates me. I am destined to never get a snap shot of lightning ever.
It's ok though, b/c we spent the night being silly and loud, and at one point I got the bright idea that we should lay in the middle of the road 'like whales' and take pics, and we did. I am covered in mosquito bites today (albeit none on my toes this time - yay!)And it was fun, and suprisingly we werne't under the influcence of any alcohol but i'm pretty sure it doesn't look that way. Regardless, it was great to be with my favourite girlies and to have some fun in the summer weather. We agreed that we all feel complete now that Krystal has returned to Canada.
Today was goreous. It was 34 and felt like 40, and while it was sweltering i loved it. It was so hot that I was exhausted from doing absolutely nothing and had a little nap on the couch as Oprah was on TV. As I was drifting off I could hear Oprah talking about Barbie and slowly my thoughts turned to Gymnastics Barbie (c. 1996 me thinks), and suddenly, I was doing backflips and my leg kicked out and i kicked the table in front of me right in the leg. And thankfully i was alone b/c it probably would have frightened someone.
Tonight was the night that things are made of: we had the gazebo twinkle lights on, it was hot and humid and i could smell the faint scent of citronella, freshly cut grass, and my shampoo and conditioner. I let my hair dry naturally and I loved nothing more than being outside soaking up the essence that is summer. I just plain fucking love it. This is what i live for. I didn't give a shit about any thing or any one, I was in the moment and it was perfect.
I remember on nights like this when we were kids, the kids in my neighbourhood would play Hide and Seek for hours on end. We'd run to our hearts content, and no amount of tiredness could stop us and make us go inside. I remember laying in the dewy grass and looking at fireflies and watching the stars...trying to see shooting stars and beleiving that we did even though we probably didn't. I miss the days when nothing mattered I guess...when nothing was holding me back.
Tonight when i sat on the deck, I wasn't a prisoner of my condition. I didn't think about it and I didn't feel it. I cannot wait for the day that I wake up and the constant pressure that feels like a cement slab that's laying on my chest is gone. I just want to be free of this. I think it's time.
I'm excited for my transplant.
I'm excited to feel like a 22 year old and not like an 80 year old woman.
I am a worrior.
FUCK YOU LUNG DISEASE!
Maybe i've said too much.
Wednesday, June 4, 2008
Anyone who grew up in the 90's should know that - regardless of if you've seen it.
Anyone who rode their bike as a kid and sang while riding their bike should know it.
Anyone who played baseball/softball/t-ball even should know that!
And i hope you're singing this for the rest of the day/night and forgetting the rest of it as I have....except I'm pretty sure near the end of the song is a 'walla walla bing bang'.
Go Veda (Thomas J 'he needs his glasses! He can't see w/o his glasses!'.
So i had rehab at TGH today. I had a Spriometer test (a really really short breathing test) at 10:15am, and surprise surprise, my FEV1 (Forced Expiratory Volume, or, the amount of air u can blow out in one second) came out at .6L or 30% for those who don't understand L and who feel lost and ashamed and violated when someone throws in a L measurement and you felt dumb b/c you don't understand.
That would be me.
So i maxed my lung capacity out at 30%. Not surprising. I also found out that next week I have to go to TGH on Mon for an 8:30am appt called a Gastric Emptying Test - or something, and I can't eat from midnight on. At this test they will fry me up and egg and put poison or 'iodine' as they told me, in the egg, and I will eat it and they will take pics of my stomach at 30 minute intervals over the course of an hour and a half. This will be done to see how i digest food. After that i need a heart burn test, where a tube is down ur throat for 24 hours and see if u get reflux.
Lately it seems like everyone is getting my name wrong. Saying it, spelling it, or getting the whole name wrong all together. Today I was called into my spiro test as "Brian"; I've also gotten, "Breanna", "Breye-anne" "Lianne", and someone got my last name wrong which beats me how they'd do that. Have I got a speech impediment or something or are people just that fucking stupid? Honestly. When i told someone my name was 'Bree' this is how it went:
"What's your name?"
"Yes - like the cheese (you fucking idiot)."
"With an i?"
"No, with 2 ee's"
"Is that short for anything?"
And that's when i'm tempted to get up and walk away.
And then turn around and smack the shit out of that person.
What else? In reference to the title today, that song is done with an accompanying foot dance which consists of jumping as if you've stepped on something hot. But in my case, this foot dance is done to prevent yourself from scratching the numerous mosquito bites that have somehow accumulated on your feet/bottom of your toes. I didn't know I had any till tonight....and when one decides to itch, the rest of them do too...and luckily I was armed with Allegra (with anti-histimamines!) and i've been good and not scratched since I took it! Had i not taken it i'd be up all night scratching, cursing the topical ointment anti-scratcher cream i put on before bed....b/c it expired and i just chose to ignore it like i usually do.
It's getting hot and humid. It's gonna be 27*C and feel like 33*C tomorrow...and Friday is gonna feel like 40*C....FOURTY DEGREES CELCIUS! I'm getting horrible headaches and am horribly out of breath as i feel the plume of humidty drift into Southern Ontario...suffocating us all. Luckily this year I'm armed with 75 feet of oxygen tubing and a concentrator which i'll most likely be hooked up to all weekend long b/c if Monday was any idicator, i simply cannot breathe in humidity this year. I've maxed myself out.
That's about all for now. I have a headache above my left eyebrow...prob a blocked sinus or polyp.
Will ignore until it becomes problematic.
P.S THANKS TO SUSANNA FOR YOUR KIND COMMENT! IT MEANS A LOT!
Tuesday, June 3, 2008
It was 26 today and it stormed and on Friday it's gonna be 31 with a humidex of 37*C. While i love the humidity and the hotter the better, i felt like utter shit today. I feel so lethargic; have headaches galore, and i keep getting dizzy spells. Right before we got a storm tonight, i got a huge dizzy spell sitting down and then lightning came a crack of thunder.....It must've been the pressure dropping but it was crazy.
I hope i get my call soon.
For those not in Southern Ontario, our summers are hot and very humid and I know how i felt last summer, so i can't imagine how i'll feel this summer. I definately think the extreme tiredness i feel is attributed to the heat and humidity. I guess only time will affirm this postulation.
(i'm so smart eh? look at that....'postulation').
I will be finished Tobi on Sunday. I can't beleive a month is almost up! I'm still tight from it and i'm STILL phlegmy so when I'm done the Cipro and if I'm still like this, I wil call my doc or the tx center and let them know that the meds have done squat. I'm so phlegmy that when we saw SATC on Friday I laughed so hard that i foamed at the mouth. And i didn't foam rabies foam it was all the phlegm bubbling up from my lungs. How disgusting and embarassing. I hate it.
I put all my pills in their little pill holdy case yesterday. There are so many that I could barely get Mon, Weds, and Friday closed. I pushed and rearranged the pill placement and finally my persistence paid off and i got the lids closed.
My precious Heidi Spiedi slept in my room lastnight. I'm pretty sure she smells like egg b/c after she had been in here for a bit my room began to stink up, and i'm pretty sure that I don't smell like egg so i'm pretty sure it was her. Her head always smells (what with the sleepers in her eyes and the constant stream of drool from her mouth...and the crap in her ears)but alas I still love her and maul her dispite all of her unpleasantries (is that a word?). We spent some time before bed cuddling on the couch....me holding her like a baby...her on her side, putting her paws on my face. At one point to punched her paw into my jugular and I'm pretty sure she pushed. She tried to kill me and failed, but i still held her, and she kept drooling, and it was great. Earlier we were outside and she was mashing her face into the grass and eating it. She looked like a turtle.
Anyways that's enough of my random babble. I have nothing to talk about honestly.
Not now anyways.