Thursday, October 29, 2009
WOO FUCKEN HOO!!!!!!!!!!!!!!!!!!!!
To say that i'm pretty stoked is a massive understatement. To say that as soon as Miguel left with The Monster in tow that I ran up the stairs, danced at the top, screamed, spun in a circle, jumped up and down, screamed some more, is 100% accurate but still does not encapsulate the excitement and utter freedom and elation that i'm feeling. To feel the excitement course through your body is pretty rediculous. I feel like i must contain myself but in doing so i just may pop b/c there's so much. I'm trying to reserve some for Halloween but even still, that excitement is backed up b/c i've been excited for Halloween since ever (it keeps me up at night, i won't lie.)
But yeah - Oxygen Emancipation. Pretty exciting. Remember when I started it back in June 2007....wow....so long ago. It's pretty crazy. Part of me is afraid the ball will drop and i'll need it or something but I know that I can't think like that. I think it's just fresh on the brain since i know a lot of ppl going through shit and it's hard to ignore it. Yesterday saw the Vindication of the Rights of Old Medication: aka, I got rid of pulmo, tobi, advair, spiriva, the old PEP mask that i hated so damn much. All of it. Out and away, forever! GAH! So strange.
No saddness today though. Miguel told me in all friendliness that he hopes to never see my face again, but to have a good Christmas. I told him the same. Today was the first time he allowed himself to admit that he hated my dogs, which made me feel good b/c it's something i've been speculating with for the last 2 years. They just bark at the poor guy relentlessly even though he never really came in the house. Oh well. No more O2 fill ups, calls for tubing, nebs, and all the hoards of other shit that comes with falling down the lung disease rabbit hole. B/c in all truth, you really do fall down a hole - a hole which just gets deeper and deeper the sicker you become. It's a long process that i hope to never go through again. I hope no one has to go through it, b/c it sucks.
It strikes me as bizarre to sit here at 24 years old and say that i've been through lung disease. I survived lung disease. I walked into the room at 17 and walked out the doors finally at the age of 23.
That's a long fucking time.
I paid my dues to illness and now what? Now what do i do? Now i have to become a 'normal' person and i'm not quite sure how to go about it. Being freed from the clutches of illness is just weird, b/c for the longest time, it's who i was.
Well, enough philosophical stuff. Today i should really get off my ass and make some phone calls and arrange some appts with my local docs. The kicker is, i can't bring myself to do it. I kind of just want to sit here. In all fairness I have left the house. I rewarded the loss of oxygen with an impromptu trip to McDonalds. I ran out the door - RAN. I flew like there was a rocket attached to my ass and sped to McD's. It's been a long time, and it was wonderful. Yay.
Ok that's enough for today.
Wednesday, October 28, 2009
Has to do with lungs and lung-in-a-box at TGH. Nice pics - not gorey. Will update more later whem boredom has taken over and comsumed my brain.
* * * *
As promised, and expected, I've thought of more to say, as boredom has thoroughly leeched itself into my brain.
After living with an iPod that hasn't been updated for over half a year, it finally dawned on me that is it infact possible to update all the shit on and off of it via an exciting little box called an 'external hard-drive'. For others much like myself who are wholeheartedly considered mentally disabled when it comes to all-things technological, i'm saddened that it's taken me so many months to reach this genius conclusion. After all, my external harddrive has only been sitting on a shelt above my head collecting dust since it's arrival this past March. I knew there had to be a way that didn't involve a painful adventure with the acer. Acer+updating iPod = i'd rather have my sternum cut open all over again than sit here in a rage waiting for the acer to process the mess of my iPod. No one should have to endure that.
So i got the lappy and we're gonna work it out. I think i can do it. I think i can i think i can i know i can!
*end inspirational moment here*.
Um. What else? TGH galavanting was good. I bussed, I masked, i bled, i pft'd, i card-delivered, i lunched, i bussed back home, and re-masked. No one was coughing and gagging all over the place spreading plague which was grand. PFTs were 70%. Excellent. I skipped from the lab and dashed to the elevators b/c too many ppl were hacking in the waiting room and i didn't wanna catch anything.
Slept on the bus home. Refrained from making strange sounds whilst asleep (remember the last time? Yeah...no repeat this time, thankfully).
Um...i did have something legit worth writing about but i can't remember.
Did i post last week that Marilyn got her lungs? Well she did, and she died lastnight:( I don't know why yet, but I was supposed to visit her today but alas i could not. She was from NS and we were close. She was a sweet heart who was a great advocate for people who had to relocate from out East and needed financial assistance. She was not ashamed to ask and advocate on behalf of herself and others in her shoes. She waited over 2 and a half years for this miracle; her hubby just came down to join her, after essentially selling everything they had to do so. And now...he has no wife, and no home to go back to. Where on the spectrum of fairness does this fall, I cannot tell you, b/c it fails to register anywhere on my own personal conception of fairness to be honest. I'm just gutted. She was a great lady and so full of life. I really was looking forward to seeing her post-tx.
Marilyn, wherever you've landed, I know you think this is pretty bullshit. I can maybe say with 100% accuracy that when you reached the other side the first thought to cross your mind was, "what the fuck is this?". The audacity of it all blows my mind. As i've always said, being friends with others in this lung transplant business is dangerous stuff, b/c one minute your friends are there, and the next, for unknown reasons, they're gone, without reason.
Maybe you were too good for this world. Maybe there's a special place out there reserved for people who have lung disease and transplant? Who knows? I don't know what else to say. I miss you. I will miss seeing you in the treadmill room. I will miss bitching about new people with you and how much we hate them and their happy attitudes. I will miss your emails. I will miss your kindness and friendship. Most of all, I miss what I can't have: hearing how wonderful you're finding life on the flip side of the transplant coin.
I wish I could save you
I wish I could say to you
It's gonna be alright
Tuesday, October 27, 2009
Wake up at 6:45am.
Haul ass to the good computer.
Register for online winter class at 7am.
Catch Greyhound bus for TO at 8am.
Arrive in TO and go for bloods, and PFTs at 11:30am.
Catch the 12pm bus back home.
LIKE A NORMAL HUMAN BEING!
3 months ago the thought of all that alone would've seriously daunted me, enough that I would sacrifice anything to bum a ride with any fellow tx'er headed TO's way. Initially I was supposed to get a ride with Helen but due to time conflicts, I have to take the Greyhound but it's totally cool. I don't mind b/c i can do it now and there's nothing stopping me (and yes, for those who worry i'll entertain u with the thought that my dad is forcing me to wear a mask. We'll see..maybe a scarf will fair better for me?). To be honest, i'm pretty stoked to go to TO on my own like an independent person. I'm not really stoked about waking up at 6:45am but w/e, shit happens. I have to do it again on Friday tho and I probably won't be as stoked as I am now, but we'll see!!
Next week sees 3 days in TO as well for my 3 months assessment! Monday is a busy day (bloods, xrays, other stuff), and tues is the radioactive egg eating day, and Weds is the bronch and that's it - no more, wooo hooo! I'm not really looking forward to all the blood work though, but hopefully news of when i can get my port placed will come! I hope i remember to bring this topic up on Friday at clinic! Also, I've been given the go-ahead to make appts with all my local docs so i must get on that....if only i didn't hate making phone calls. Laziness has descended upon me...
Um what else? I think that's it. A certain someone wanted a shoutout so here it is, to Matt: you owe me a sunrise, a random drive, copious dances to text messages, and a ship. A big ship. Made of wood. No zombies.
Monday, October 26, 2009
Old people to be exact. They tend to be the rudest people I know when it comes to seeing me post tx. I ventured back to my old pulmonary rehab today so work out. I was excited to see some people as it's been a long time, and while I got plenty of warm welcomes, some people in particular are just so rude with their comments that they aren't even aware of it.
Like one lady today. Hadn't seen me since August and the first thing she yells is, "OMG YOUR FACE IS SO FAT! IT'S THE FIRST THING I NOTICED!"
Um...Seriously? Are you fucking kidding me? Because i'm pretty sure it looks A LOT better than it did, you old bitch.
While I appreciate and advocate honesty 100% of the time, people need to learn when to seriously shut the fuck up when they breech the point of offending people. I just couldn''t beleive it. Short of extending my arm and squeezing her neck thus draining the air from her, i just stood there and glared at her. I promptly got my phone and sent my mum a text about how rude this person was and how i couldn't get over it.
I know my face is fuller, but I wouldn't say it's horribly so. And i'm overly selfconscious about it so it sucks that it's the first thing she said to me. But to her what's 'fat' isn't necessarily so. She knew me as gaunt and sick before, not colourful or healthy. But 'your face is so fat'? Seriously? I don't think so, I think u need to sit down and let me smack your mouth off.
I could've easily retorted with, "holy shit u've aged a 1000 years since i've seen you, but you're still just as much of a bitch as before and you've thoroughly reminded me of why i hated your old ass to begin with." But i didn't.
I did however, steal her treadmill as she walked up to it, and I took over 20 minutes on it, going as fast as i could. My humungous fat face bobbing above it the whole time.
Saturday, October 24, 2009
I love you.
I just checked our functions with the handy microspirometer and it came out at a whopping 1.75L or 75%.
I thought it was a lie. I thought it was b/c i half horked into the machine too. So upon a second (out of the usual 3 we are told to do), i got 1.72L.
It was not a lie. 3rd time was 1.68L. Still not a lie.
How is this possible? For a girl who was dying at 21% a mere 2 and a half months ago, we have glided astronomically up the lung function scale. Something I never thought possible. Truely. Pre-tx I could not imagine that gaining lung function would be so easy, b/c prior to it was just a struggle to stay where i was. I didn't go up; i went down, and i accepted that. High lung function wasn't an option for me and I didn't really care for it. It was something out of my realm and reach and something that I wouldn't ever have the luxery of experiencing, and I more or less accepted it. Being able to breathe normally and not get out of breath doing simple tasks was a way of life that I kind of stopped questioning for myself, but never stopped questioning when i saw how easy it was for other people.
And now I know. And it's so beautiful that it makes me cry.
75%. Who woulda thought?
I love you, lungs. I love you more than you could possibly know. You have not only given me life, but you're sustaining it, thanks to the kind donation of my awesome donor (watching from the shiniest star in the sky), a donor who clearly kept the both of you in awesome, stellar shape. I am glad we were paired up and I was entrusted in your care, b/c i intend to take the best care of you that you could ever imagine. To feel you living, safely ensconced in the (almost healed!) cave of my chest, next to my happy heart, it's pure madness. "Love" may be a four-letter word but to me it radiates so much more.
Dear Old Lungs:
It was been 2 months, 2 weeks, and 3 days since our departure. I never said goodbye. I never really thought of it. I kind of had no thoughts about it at all when it happened. But here we are: me, alive, back home, and you, breadsliced in a lab, or worse, just a single breadslice of lung and the rest destroyed in a fire. It's kind of upsetting from an emotional standpoint to think that such a vital part of me has been cremated and the rest remains completely alive. I don't really know how i feel about it, but you tried your best and you kept me going for 24 years almost. The best thing the lab people could do for you was to give you a rest - though I don't think burning you in a fiery death would be the way i'd go about it. But i wouldn't want you burried somewhere either I don't think...
Anyways. You tried your best when we came into this world together, but unfortunately the world did not like you and my body was not the best place for you to be, as you were the brunt of much abuse. But as abused as you were, you held out for 23 years, and I'm thankful to that. While I hated you from a physical point of view, mentally and emotionally you were the best teacher I could've ever had, and I thank you. But your struggles with me and the world are over now, and may you rest in peace and breathe easy whereever you are. Maybe in your next life you will fair better than you did with me:) I don't wanna say it but I guess i love you too...since we were one just a short while ago.
So new lungs, old lungs, and lungs everywhere: you are awesome.
Thursday, October 22, 2009
But in today's society that seems pretty much to be impossible. Unfortunately for someone like myself, who kind of lives in alternate mind-frame and hates the way society is going, being self-sustaining seems to be impossible. Where would i come up with half a mil to buy land to plant crops, buy an old stone farm house and restore it, and where would i get the energy to do all this? Ironically enough, it isn't the self-energy that i'm afraid of running out of; b/c I won't, b/c i'm not sure if you're aware of this, but I am a superhero with lungs of Awesome, and i'm not running out of steam any time soon.
It's the 'how do i go about this', dealio.
I don't know why my brain is so consumed with living like it was 100 years ago. There's just something so beautiful about being able to whole-heartedly say, "I did this. I grew this. This is mine and I am keeping myself alive." and yadda yadda (word up to the meds who are doing an excellent job at keeping me alive too). Everyone knows - next to being a superhero - that I love to bake and cook and all that, and i'm trying to get into preserving stuff (who knew locating jars was so hard? and who knew some people in the fam could be so hell-bent about where said jars and preserved goodness should be stored?), but while i have all the time in the world, it seems like i have no time at all.
I am caught in the middle. While i'd like to think i could live and function like it was 1909, the reality is i could only do so with a laptop at my side. I went 2 days w/o internet b/c the modem suddenly turned into a douchebag over night, and i was pretty close to having grand mal seizures from lack of contact with friends ( i don't make phone calls; i hate calling ppl. i prefer texting/fb-ing/msn-ing).
So i dunno. This entry is giant glob of 'i don't know' I guess.
Are some people naturally inclinded to feel this way? Nature vs. Nurture? I beleive it. I beleive there are things that are internally ingrained in us that can be sparked by one small thing, and that one small thing and that tiny spark can evolve into something bigger than we could ever imagine. I'm like that with cooking and playing piano and spidey senses (laugh if u must!). Not sure who in my family had 'em but someone musta passed them along to me. There are just things I know how to do w/o being taught, and ways to go about things/living that are just easier and more practical to me than the world around me allows it to be.
All i want is to live in a stone house in a forest maybe, where I can be self-staining and happy, and i can walk and exercise my lungs of awesome, and bake, and cook, and make pickles and jam and cool shit, and read, and write books. B/c that would make me happy b/c to me, that is the epitomy of happiness.
Or, living out east - or in BC near the rainforest.
A girl can dream, eh?
Oh and i would like to take a train. Random, but worth noting.
I think that's it for today. Class dismissed.
Wednesday, October 21, 2009
Honestly - yes, it sucked to hear, but on the other hand, i appreciate their honesty. But i know that it's not that bad so i have to stop being so finicky about it! W/e. Fuck the world and every corn on its cob i say!
Um...so yes, BODY WORLDS! Truely fab! The iMax movie was slightly disappointing b/c they focused largely on the heart and I felt discrimminated against - i'll be honest - but it was still cool nonetheless! Kind of awkward then they showed how babies were made and they played 'lets get it on' and my dad was beside me. It was one of those, "OMG IF I EVER WANTED TO BE STRUCK BY LIGHTNING OR SWALLOWED UP BY THE FLOOR LET IT BE NOW!" but alas, i made it through. And the best thing of all is that not one person in the theatre coughed, which goes to show how tough people are being about not going out in public when they've got the plague. As sheer luck would have it, dad and I just happened to choose to go on a day as 2 fucking school trips, and although the place was crawling with the naughty little bastards, at least not a one was riddled with illness. HURRAY!
So yes, back to Body Worlds: FAB! Very inspiring and it really makes you want to take good care of yourself and exercise. I can proudly say that i EFFORTLESSLY took MANY flights of stairs and i enjoyed every second of it. I truely did. I don't know how i can elaborate on the Body Worlds exhibit b/c it's something you have to see for yourself if you're lucky enough. And yes, to the person who commented on the smokers lungs: GROSS. GROSS GROSS. They were SHEER black and the person smoked 20 cigs a day. They had them next to beautiful healthy ones. Makes me truely appreciate the gift i've been given...
Speaking of which....the rainforest. At the Science Center they have more than one exhibit and after body worlds my favourite was the rainforest. I don't know if i can explain it but i will try to find a link. They had carpenter ants coming in through a clear tunnel from the outside and into a plastic den, that they themselves were filling up with bits of leaves, dirt, and the like. It was soooooo cool to see them doing it and really inspiring. It completely made me appreciate the little things in nature that we miss and fail to acknowledge. I will never step on an ant again. It was just so ...inspiring almost, to see them marching along that it's not something I will soon forget. It also makes me want to watch "Ants".
Then there was the rainforest itself....real plants and trees in a temperature controlled environment. The greenery was gorgeous and it was beautifully humid. They had frogs, fish, and my fave: A TURTLE! Unfortunately the turtle was in the water and floating there and extremely unreachable (and it probably snapped) but you know that if could get close enough i would've stolen and/or hugged it. Even if it bit me, i would've captured it as a pet b/c i love them so much.
For extremely unknown reasons.
But the rainforest...there was something in there that truely brought me to life. To be there in the dense humidty was like a dream: there I was - albeit in an artifically created environment - and i could breathe. No problem. Nothing. A deep breath in, a breath out, another deep breath it, no snap, crackle, pop, Kellogs Rice Krispies! Nothing. No coughing. I walked the roped bridge across the tiny stream; i tripped over tree stumps...i gawked, i moved without any issues. And i love it. And it inspired me to really start saving my money so i can actually experience a real rainforest. I really want to go out to BC to see theirs. Now, that is more reality than ever!
Today was the Lung Transplant Support Group bake sale! I baked Skor Bars and Peanut Butter Rice Krispie Squares drizzled in chocolate! I will have to see tomorrow how they sold so that's something to look forward to! Tomorrow is my last full day here in TO as well! I am excited to go home for good tho, although I will miss some aspects of the city. I'll miss being able to go out the door and be somewhere and not have to drive to every place. At the same time, I like being able to be at home where the airs cleaner and i can walk trails. Which is what i'm hoping for this weekend!
Well i guess that's enough gabbing for one night. I'm going to have some apple cinnemon tea with some honey and will my 'steriod induced weight gain' to drain from my body along with my lady beard.
Monday, October 19, 2009
Thoughts? Feelings? Expressions of love and/or concern?
Suffice it to say I am feeling a lot better today. I walked to the Bulk Barn for some bags today and it took me 20 mins to get there and another 20 to get back (waiting at stop lights, finding bags in the store, and stopping by Timmies for tea) notwithstanding, it made for about a 45 minute trip. And i felt really good afterwards as it cleared my head.
I came to this conclusion: fuck the world and its opinion. Do not let others success determine your own.
I am settling down for my final week in TO. My three month assessment is scheduled for Nov 2-4th and i'm looking forward to it. Tomorrow i'm going to Body Worlds with my dad.
I think that's it. I'm feeling sooooooooo much better. Must go catch some 8-9 hours of sleep! Tres tired!
Goodnight, my kittens.
Considering the fact that i've had a pretty awesome 2 last days hanging out with Krystal (Value Village costume hunting yesterday, attempting to antique-market yesterday, random fudge shop drop in, Macondo's book store whoring, laughing at horrible parking job hysterically, antique-marketting success today (3 hours worth!), Scottish-Shop-ing, grocery shopping, getting my hair done...etc), i can't help but feel....blah right now.
And not only that, but i have much to look forward to this week: Body Worlds on Tues, Lung Transplant Group Bake Sale on Weds, seeing docs at Sick Kids on Weds, and coming home FOR GOOD on Friday.
So then why am I acting and feeling like a complete and utter douchebag? Is it maybe the fact that everyone around me seems to be focusing on the negative and it's rubbing off on me? With all that I have to be thankful for, why am i focusing on the stupid shit?
OH YES: lets not forget that i saw my nana and papa today and he (without prompting or question) said "your cheeks are getting chubby", and add in the fact that on a whim at the hair dressers yesterday I coloured my hair from blonde to essentially auburn, and while i do like it, it's shocking and i resemble an alien.
With chubby cheeks.
I was told that my hair was going to be coloured a shade darker so when it starts to fade it won't fade fast, which is understandable, but i guess with everything - chubby cheeks and shit - it can make a girl feel kinda shitty.
And lets mention that i did 2 - actually 3, but one's not my fauly - stupid things to my sternum in the last 48 hours. Pleas,e punch me in the head while i recite them:
1) failing to reach the macaroni and cheese in the cupboard, i decided I would just jump up as i always did before surgery. So i grabbed onto the counter, jump, and with my arms hauled my ass onto the counter. Yeah. Fail. Absolutely no upper body strength at all. A massive fail is also shouted out from my sternum bc i'm pretty sure that was amongst the stupidest things i could've done, regardless of if i'm almost 3 months post and all that. I just don't think.
*insert head punch here*
2) half awake, half asleep, i had a massive stretch this morning, and i'm pretty sure i may have hurt my sternum by doing so. This wasn't a conscious 'be-careful-and-don't-stretch-too-much-stretch-like-you're -in-a-swaddling-cloth-or-wrapped-like-a-mummy' stretch, this was stretch as if i had never been cut open and had my sternum flayed. I'm sore, but my sternum isn't clicking or anything, i just feel like an utter fucking idiot.
3) i got head-butted in the chest by my cat. and then she stepped on me.
Way to go *thumbs up*. I don't frigging learn.
I've been berrating myself over not blogging enough in my immediate post-tx recovery, b/c i'm sure i'll come back in a year and kick myself for not keeping a better record of what i did or how i felt. Well i feel fine - except for being mentally retarded - and externally the incision is fine, though I did see the spot on the incision where one night i was violently pelted by an angry shower droplet from the shower head directly onto the incision itself, and it hit me so hard some skin flaked away. The incision looks good but it's really thick and stuff. Not that i care, b/c it could be red and angry and i would still love it regardless. It means that im living and here for a reason.
So i think that's it for my list of complaints. For all the things I have to be grateful for, i'm sure focusing on the negative. Hopefully I can sleep it off and wake up in a better mood. I don't like feeling like this.
Good night moon, good night stars, good night alien head with chubby cheeks.
Wednesday, October 14, 2009
Denial I believe it's called.
I took a deep breath in. I looked up at the billboards, the flashy lights, the stars and the airplanes, and I could not process a single thought. Would not, process a single thought. The moment lasted forever, yet it was gone all too soon.
So this is what it feels like to grow up I guess. To bid farewell to the friends you love and hold so dearly and take their proximinal closeness for granted. I can't just zoom over to Jenna's now with freshly cooked bacon in my hand like I used to. I won't ride in the scary, haunted elevator alone or with the girls again. We are a team: the four of us...We still are a team, albeit with now an out-of-provincer. I still have my beloved Katey and Krystal (thank god!). But to be there and see your friend off as they begin their life is something else. We won't see Jenna until June, and then she moves out to Newfieland for good, but I will be making several trips out East to pester (Krystal and Katey in attendence) her so it's not so sad. It's just - in this moment - bizzare, sad, happy, sorrowful.
This is what it means to grow up, I guess.
Tuesday, October 13, 2009
Observation#1: When approaching a crosswalk that is full of fleeing people trying to get to the other side, with a little less effort and restraint, you too can be that one asshole who crosses the street when the seconds have run out, and people are trying to turn left and right. Highly effective at major intersections such as Dundas and University, and especially College and University. Give it a try sometime if you're ever in TO: you just may elicit the loudest honks you've ever heard. But what's even better is the internal satisfaction that will radiate from the inside. There's nothing quite like knowing you are the solely responsible for holding up traffic and causing an outrage. Truely gratifying and worthy of many self-congratultaions.
Observation #2: If you sprinkle Rosemary around the fence of your yard it will keep out evil.
Observation #3: It is quite possible to enhance your loitering skills beyond what you thought humanly possible. Mine have exceeded all self-expectation. The art of loitering is something only few can master. I think i've gracefully moved from 'whoring' myself in bookstores and maybe surpassed 'loitering' even, to the point that these people see me so often (climbing shelves, sitting on the floor in my own world), that they simpy accept me for who and what i am and what i do, and stop wondering how much merchandise I'm actually stealing.
Keep up the great work, self *thumbs up*. I'm proud of you.
Sunday, October 11, 2009
For myself, we're celebrating today, and as one can guess, I have a lot to be thankful for this year. To my donor, for the amazing gift they gave me just two short months ago. I took the Spawn for a walk today in the lovely (albeit cool) fall weather. We went up to the park, and although she was acting like a complete spaz the entire time, I looked past it. Instead i found myself marveling at the feeling of my new lungs expanding and working...these beautiful expandable creatures dwelling inside my chest....aptly placed to keep me up and running - keeping me alive. To feel the inhaling and exhaling without crackles, without spurts of coughing and interupted with bouts of wheezing, isn't something i can explain to normal people. To feel them working deep in my back at the base of my lungs - a feeling i never had pre-tx, makes me stop every time i notice it happening. I love it. I love it to peices and always will.
Just to be able to stand on the trail with my mits on, and the Spawn acting like a spawn, was enough to make me happy. The colourful leaves flying off the trees and blowing by made it truely feel like Thanksgiving. The smell of the leaves just made it better. Although by the time our walk was complete and my ears were frozen, i can honestly say that this is the happiest Thanksgiving I've ever had. However, I know that somewhere out there is my donors' family, and it isn't the same for them. I am thinking of them today as well - as always -and am thankful to them and their decision to honour their loved ones wishes. Again, wherever my donor has landed in their afterlife, I hope they are resting on the shinest star imaginable and being treated like royalty.
I made butter tarts last night. Butter tarts are Canadian and they are awesome. I've never made them before, and I made everything from scratch - pastry included, and let me tell you, everything turned out fucking awesome. 12 butter tarts were created, and with the left over pastry and filling my parents suggested i make 'candy cake' or some roll thing. Basically, you make a giant butter tart but in an un-uniform manner...it looked like a burrito and i cut it to make spiral cookies, which also, turned out to be nothing short of fucking awesome.
I was hoping that would be enough, that it would act as my 'get out of jail free' card for today, and that it would allow me time to escape the familial madness that accompanies holidays, when everyone crowds into the kitchen even though they are not qualified to be there and have no intention of actually helping, but rather, they choose to stand there like a pillon holding beer and getting in the way. But no, i found myself making stuffing and then bacon and eggs for breakfast.
So now i'm opting out and reading on the couch, as i listen to those familial screechings of the parental units over who will make the potatoes, when my sis is coming over, and 'i can smell the turkey' ect.
Happy Thanksgiving everyone! Even when people drive you insane, be thankful that you have someone to do it - no matter how much they annoy the absolute shit out of you.
Friday, October 9, 2009
Almost everyone knows that i’m a huge dreamer – literally and figuratively. But i always remember my dreams in every detail and can 95% of the time recite at least 4 dreams I have each night.
I had 3 last night.
Most of my telling dreams occur between the hours of 3-5am, and although I am actually asleep for them, I know that they occur between these times for some reason. Ironically enough, they say that between the hours of 3-5am is when the gap between the living and the deceased is bridged and communication is a lot easier b/c the lines that keep us separate blur allegedly. That’s what ‘they’ say – who knows who ‘they’ are though. I’m not forcing anyone to read or believe any of this either.
Either way, I’m the sort of person who pays a lot of attention to what I dream, b/c for myself, my dreams help me sort out a lot of what’s going on in my life and helps me figure out shit. I get a lot of answers in my dreams as well. Visits too – which is precisely what happened lastnight.
I had a visit from Karyn. It was her, but at the same time it wasn’t – though i knew it WAS. She didn’t tell me anything important tho...we were just walking and it was more like she was seeing how i was doing and telling me to be careful. But she wasn’t. She was talking to me but I don’t remember sound coming out.
The second visit has kind of made me feel cautious today. Not to go into too many specifics, I had a visit from Jason, my transplant friend who unfortunately passed away in May. I’ve never had a dream about him before, and didn’t think I’d get a visit seeing as we weren’t very close. We were friends, but he had others he was closer to. But for some reason he showed up in my dream last night. We were in a field/park/pasture. It was really green (the colour of life) – vivid shades of greens – and there was an old wooden fence behind us, before a line of trees. The sky was overcast, but the type of overcast that makes the sky shriek with brightness. He had on a greyish blue shirt and a backwards hat. I could see myself at some points but I don’t remember what I looked like. And i can’t remember in detail what he was telling me, but he was also telling me to be careful. I don’t know why, but it’s a theme that has been running through my head for days.
Is it possible for things to be TOO good? I feel like I need to slow down almost. The exact words that flash through my head is to ‘not push my luck’. Should i take better care of myself? I know I am but should I maybe not go out so much? It’s confusing, b/c i want to use my new gift of life to each and every advantage, but at the same time, I need to be careful and take it easy. I drove to my old rehab today and the whole drive over i felt jumpy. I felt like I had to be careful...like I should pull over and go home and get off the road. The longer I drove, the stronger the feeling got.
Regardless, I went, and it was fine, but the feeling is still nagging me. I got home and I plan on staying here. Thank goodness for spidey senses, and friends who look out for you even on the other side. Nothing has happened to me, but i feel like something – somewhere, to someone, not necessarily me – might (God forbid, and i hope i’m wrong). Maybe I’m wrong; maybe I’m thinking too much. Maybe my mind is being overly reflexive and is mirroring the weather today (rainy, dark, cold – kind of perfect!).
Is it sad that what actually brought a giant smile to my face was the fact that I realized i could read all day undisturbed?? LOL. No, I am actually in a happy mood today, like always, but there’s just this intuitive vibe running through my head. I feel very....in tune today. It doesn’t really bother me, i’ve always been like this and can’t imagine knowing anything different...but i don’t know why i feel compelled to stay safe inside the nest today.
And yes, I re-did the blog again. Thoughts again? Lke? Dislike? I like, though I need to get used to the fairy people on the side.
Hmm...well, upon talking to Megan i think i may be closer to figuring out why i feel like this today. Maybe nothing is going to happen, but rather, maybe someone is with me. My donor? I said. Maybe it’s their bday?
And when I said that, i got chills. The hairs on my arm stood up (esp. Forearms, that’s how i know), and i got cold. My heart is pounding.
Could I be right? Could this be what’s bothering me?
Well, I think it’s your birthday today, donor...Congratulations are in order.
Cheers – for whatever reason. Thanks for looking out for me?? And most importantly, thanks for saving me and keeping me in check.
Thursday, October 8, 2009
A friend of mine actually has H1N1 - very worried!- , Amy (http://www.mycfjourney.blogspot.com) is locked up in the FunHouse and i'm really worried for her as well, Megs requested to be punched in the eye, so i punched her in the eye on facebook, and yesterday I had to be cut out of my pants.
Yes. What is the world coming to?
In reference to the last point, yes, i had to be cut out of my pants yesterday, which resulted in the partial destruction of a lovely lacey pair of undies but i wasn't really thinking of that when i took the scissors to them. I discovered this problem whilst in a bathroom stall - Jenna in the one beside me - in the basement of a pub in TO that had horrible service (that $3 tip was wasted Jenna; we should've dine and dashed!). Not thinking much of it i forgot about it till i departed with Jenna and walked home. Upon changing into jammie bottoms i discovered the issue at hand was more severe than initially thought - it was going to be impossible to actually separate the lacy bit from the stupid hungry zipper that ate the lacy bit in the first place. Tugging, employing mum to hoist the zipper up then down, did not work.
Scissors were the only option.
Obviously, I escaped unfazed but the undies suffer and as a result have a huge, unattractive mangled tear in them. And you know what sucks more? Is that this has happened before. You just can't trust those jeans whose zipper is located on the hip rather than the crotchal region!! Let me tell you!!!
What else? I'm back home for the weekend! This weekend is the Canadian Thanksgiving and I'm tres excited! I need to make a hair appt as mine looks atrocious and is dried out like mad b/c of the pred.
Tonight also saw the first official Post-tx Cat Mauling Session, starting with the Heidi Speidi. As soon as she was freed from the basement she began stalking me and found her way up to the couch. Unable to jump up b/c of the selfish dog who refused to move, i gathered her decrepit body up, molded her into the shape of a shrimp, and rocked from side to side as she likes.
And then the purring began.
I don't know if anyone has pure white cats here - or cats with pink ears and noses - but generally, when they are really, really happy, the pink goes from light pink to dark pink. Well, she got really really happy and the purring got louder and i knew it was time to stop the Maul-Fest lest she never get off of me.
That is when the Pig decided it would be her turn, but being a solid brick of a cat and about 15 lbs overweight, I couldn't pick her up and told her to jump up on my lap instead. This didn't end well and I've only seen Zoey temporarily in the bathroom before she ran down to her lair in the basement to plot against the world.
And that is how my day has been.
Wednesday, October 7, 2009
FEV1 today, 2 months post-tx: 1.67L or 67%
(ok so i lied: it was 1.67L when I checked lastnight and 1.64L right now, but a 4% decrease isn't anything to be concerned about - but 1.67L sounds more impressive than 1.64L)
SO YAY! I am 43% higher than i was just 2 months ago! CRAZINESS!
Today I met with Jenna and The Yukon here in TO for a late lunch, and then we gallavanted to the giant HMV. Soon after they had to depart for the subway and I walked all the way from Yonge St to our place in under 20 minutes without getting out of breath. I didn't even think about it - it's so crazy. I feel normal, i can't describe it. To use the stairs and not even be slightly out of breath? Maddness. Complete insanity.
Chubby face alert from today. I blame my hood.
Monday, October 5, 2009
Lets examine the key features of both of ours.
Lets start with Yours Truely: Me and the Acer.
Acer Aspire - Key Features:
- 8 years old
- extremely slow
- takes 10 minutes to start up
- frequently freezes
- doesn't have MS Word anymore
- spacebar blinky thing jumps back 3-4 spaces sporadically when typing
- can't read CDs
- randomly shuts off
- non-functioning battery
- heats up to temps that could potentially cause combustion
- a total peice of shit at times
- friendly and forgiving when smacked
Here is a picture of me: http://www.imageshare.web.id/images/lwiepf9ctdd9zr59l7zl.jpg
Krystal's Laptop - Key Features
- shrek green
- left on 99% of the time
- frequently needs to be taken in due to repeated influx of alien computer viruses
- missing the letters 'u', 'z', and 'c'
- has travelled to Iceland and back
- does not have a printer companion
*computer photo not available at the time*
So I ask you people, judging by the key features report stated above, whose computer trumps who when being a total peice of shit?
Friday, October 2, 2009
Really, but like my spidey senses told me well before I got my tx, I knew at some point I'd have to officially say 'goodbye' to my old life, and that i would have a really difficult time with it.
Is is horrible that my old 'life' connotates 'meds'? B/c that's actually what it is.
Since my tx all my tx meds have lived in a big brown bag on the dining room counter, within reach while i was too weak to go upstairs or my brain was not yet accustomed to/good at remembering just what meds i needed to take and their doses. Tonight, i decided it was time to clean the table off and relocate my meds to my med drawer in my room, and vacate the old ones.
And holy shit, it was kind of hard.
Tossing out my advair (which was new!), septra, singular, azithromycin, 1 tablet of pred from my hospital stay, spiriva etc was easy in and of itself, but when it came to getting rid of the physical plastic stuff - the stuff that tied my to my illness and was essentially, my life line, was hard. I always thought I would rejoice the day I threw out my oxygen tubing, and aerochamber, and accapella, and humidifier thing for my oxygen concentrator, but truth be told: it's enough to bring me to tears. It took me a good hour to sort through my med drawer (and to be honest i had other shit in there like cards, bank statements, pay stubs....but irregardless they were all reminders of my old life). That in and of itself was enough to transport me instantly back to the life i led just 2 months ago.
And i didn't like it. Not one bit.
But at the same time...like i said, the physical ties that remain - the carcasses of my old life - i can't just toss out for some reason. All my old meds and PEP mask, and other stuff are in a big brown bag. My box of extra oxygen tubing is in a brown box. And the farthest they both got was just outside my door. I cannot bring myself to bring them down the stairs and initiate the death of my former life just yet. I cannot be that executioner I need to be. I don't know where they will go in the mean time...but right now it seems too early to say goodbye to the illness that i so badly wanted to be free of.
And then there's my newer aerochamber and the like. Still on my desk with the acapella (which is new too). I doubt i will get rid of those, but i will wash them and put them into my new med bag, in case i ever need to do any temp inhaled treatments (god forbid - but keeping them will save me a fortune in the end!).
I stil have my concentrator downstairs. The oxygen tubing is still hooked up to it and it's on the little ugly couch beside it. I still have to remind myself that i don't need to turn it on right before bed. I won't get rid of it till after my 3 month assessment (which apparently is what most people do anyways). But still, as healthy and lovely and wonderful and full of life as i feel, i can't bring myself to detach and sever the oxygen tubing from the concentrator itself. 1 part superstition, 1 part bafflement.
It was weird to see the physical evidence of what it took to keep those old lungs going. Maybe it's different for someone like me (or someone with CF), b/c you grow up being sick. It's not like something that just comes along, threatens your life, and a couple of months or years later you're fine again. I WAS BORN INTO THIS LIFE AND I CAN'T JUST TURN AWAY, NO MATTER HOW MUCH MISERY IT COST ME. NO MATTER HOW IT TRIED TO WIPE ME OFF THE FACE OF THE EARTH.
So maybe i'm not really 'keeping' this stuff out of nostalgia? Maybe I'm keeping it as a reminder to myself that i am 24 years old and I prevailed: I survived lung disease.
But still, emotionally and psychologically: who knew it would be this hard?
Yup. Cheese. You can't go wrong with cheese. It's fun, colourful, goes with most things, tastes great, and most importantly, it's awesome.
My PFTs yesterday came out at a whopping 62%! That's 41% higher than when I got my tx! HOLY FRIG PEOPLE! Start your cheese eating now! My x-ray today looked fab: lungs still getting clearer, mysterious 'airpocket' is thankfully resolving itself (eat second peice of cheese slice, here), blood work is perfect (consume 3rd slice of cheese if you please), and probably most exciting of all: SOME OF MY MEDS HAVE GONE DOWN! I went down on Imuran and most happily, down on again on prednisone (consume entire block of cheese starting now). I started off after tx at 25mgs of pred in the morning. This past Tues it got knocked down to 20mgs a day, and today at clinic (since my bronch showed NO rejection! Praise God!) it has gone down further still, to 17.5 mgs! WEEEEEEE!!! What i have done to deserve being treated so well post-tx, I do not know, but I am thankful and make note of every wonderful thing that comes my way!!!
So i am home now, out of TO until Monday evening. Doing laundry, reading, chatting on MSN. It's pissing rain outside but I wouldn't have it any other way. Well, if it wasn't raining i'd prob be out powerwalking and knocking small children over but that will have to wait another day. The sunshine brings out the best in me.
HAPPY FRIDAY ONE AND ALL!! EAT SOME CHEESE AND RELAX!