HAPPY HALLOWEEN TO ONE AND ALLLLLL!!!!!!!
Ok, now that that's been established, I can continue on. First things first: October 29th marked my 6 months point of being listed. Alas, I am still here, and waiting.
Second things second: the TGH every Weds dealio has been re-arranged. Due to a potential Cepacia outbreak among some CF people at the hosp, I am no longer allowed to be around any patient with CF (and the same applies for CFers who are no longer to be allowed around eachother regardless of if they carry Cepacia or not). Since Bronchiectasis and Cystic Fibrosis are similar in that they exhibit respiratory problems in the same way(constant infection, mucus production, cough) and are also prone to the same infections (MRSA, Aspergillus, Pseudo, and B.Cepacia), we must all be kept away from eachother lest we all infect ourselves with things we don't really want and things we don't really need. So to minimalize my chances of contracting Cepacia from a CF patient, I will be going to TGH every other Wednesday now in the mornings, and will go to clinic on Mondays as opposed to Wednesdays. The week I don't have to go to TGH, i will just do physio at my local place 3 days a week.
Understand?
Good.
I had clinic this past Weds. It went well. Was short and sweet and didn't wait too too long. I expressed my concern over being on Tobi b/c a side effect of it is hearing loss, something that happened to me as a result of being on antibiotics too much as a kid when i was younger, and then again when i got diagnosed with Bronchiectasis at 17. It's not that i've been noticing any more loss (it's not too bad to begin with), but I don't really want to risk a chance of experiencing it again and asked if there was another alternative to Tobi and i was told that nebulized Colistin was one, so the next time i have to do Tobi again, I will just to Colistin, who's risk of experiencing hearing loss is significantly less. Thank God.
Another concern i expressed my extreme increase in short of breathness. That concerned them and they told me to watch it. There isn't really much they can do about it though, and once again i dodged the threat of being put on Prednisone (it's been mentioned twice in the last 2 weeks and both times i blurted out "NO!"). I assured the docs that Tobi was making me less phlegmy - and it has, so for now, that's cool. I don't really know what is worse, getting fat from meds, or losing my hearing from meds. Neither option is enjoyable, but then again i'm a horrible person and would probably opt for losing my hearing over getting fat (which is only temporary anyways as opposed to otoximia). This just goes to show that i do infact, have too much time on my hands.
In other exciting news, I've started that horrible med called Fluconozole. Among the short spectrum of wonderful side effect i read was "stomach ache, vomitting, diahrrea, dizziness". You take this med with food, which both times i have done, and both times I've spent the rest of the night in a state of misery, wondering if i'd spend the rest of my life glued to the toilet for fear that i could not stray from it for too long lest i have some unfortunate accident. Gross, but at least i'm honest.
This festive week (the threat of deafness and crap attacks aside) has been good. I've managed to consume 4 chocolate bars since Sunday (whole ones) and 3 small ones today alone in the spirit of Halloween. So overall, I can't complain.
Tonight i'm handing out candy to any little bastard who stops by my house, whereupon their departure, I will retire myself to the bathroom, to reclaim my spot on the toilet so I don't suffer some horrible accident. The thought is so enticing that i'm merely stopping myself from skipping down the street with glee!
Friday, October 31, 2008
Tuesday, October 28, 2008
PFTs and Appt
No special title. No special specialness today.
Had PFTs this morning. They were shitty as expected, with my best one being the one where i coughed into the machine and showed my lung function maxing out at 31%. So i feel shitty but there hasn't been much drop, but it also shows that the meds i'm taking are doing dick-all. Hmmm...
After that had a meeting with the surgeon about the results of my scope. Things were found as they expected to be. I guess there isn't much muscle contraction in my lower esophagus (which is involuntary) but there isn't much they can do about it to fix it. If they were to try to fix it, it could cause my reflux to get worse, so they're going to leave everything as is and hope for the best. If i havent had any problems with it to date, there's no real reason to anticipate probs in the future. I'll count my lucky stars and hope i stay out of that sick boat. I'm already scattered in many - most of which are sinking.
They found something in my lower esophagus called Candida...or Canada as I heard the surgeon say. Candida/Canada is a fungal infection (yummy) somewhat like Thrush, but b/c i have that immune system problem I am more prone to it, so I am going to start a 14 day anitbiotic/antifungal to take care of it and all should be well. He said this sort of fungal infection (in my head it looks like barnacles....is that gross?) may cause me to feel like I have reflux when I actually don't, so who knows???
The surgeon looked at me in a way before i left and said, "hopefully soon!" in regards to transplant. He said he's seen my name come up on the list a couple of times (which is great!) but my problem is that i'm just 'short'. He said all the people who have been dying lately are big people, so you know what this means: short people, start your dying! (i mean that in the nicest possible way, but im also kidding!).
So hopefully, possibly...soonish?? PLEAAAAAAAAASEEEEEEE!
Also, I'm extending my congratulations to Rosie who has finally breached the 100% mark with her PFTs and she blew them away with a reading of 102%! WAY TO GO!!
Had PFTs this morning. They were shitty as expected, with my best one being the one where i coughed into the machine and showed my lung function maxing out at 31%. So i feel shitty but there hasn't been much drop, but it also shows that the meds i'm taking are doing dick-all. Hmmm...
After that had a meeting with the surgeon about the results of my scope. Things were found as they expected to be. I guess there isn't much muscle contraction in my lower esophagus (which is involuntary) but there isn't much they can do about it to fix it. If they were to try to fix it, it could cause my reflux to get worse, so they're going to leave everything as is and hope for the best. If i havent had any problems with it to date, there's no real reason to anticipate probs in the future. I'll count my lucky stars and hope i stay out of that sick boat. I'm already scattered in many - most of which are sinking.
They found something in my lower esophagus called Candida...or Canada as I heard the surgeon say. Candida/Canada is a fungal infection (yummy) somewhat like Thrush, but b/c i have that immune system problem I am more prone to it, so I am going to start a 14 day anitbiotic/antifungal to take care of it and all should be well. He said this sort of fungal infection (in my head it looks like barnacles....is that gross?) may cause me to feel like I have reflux when I actually don't, so who knows???
The surgeon looked at me in a way before i left and said, "hopefully soon!" in regards to transplant. He said he's seen my name come up on the list a couple of times (which is great!) but my problem is that i'm just 'short'. He said all the people who have been dying lately are big people, so you know what this means: short people, start your dying! (i mean that in the nicest possible way, but im also kidding!).
So hopefully, possibly...soonish?? PLEAAAAAAAAASEEEEEEE!
Also, I'm extending my congratulations to Rosie who has finally breached the 100% mark with her PFTs and she blew them away with a reading of 102%! WAY TO GO!!
Sunday, October 26, 2008
Confessions Part II
1) I hate you lungs.
2) I am no longer afraid of dying.
3) I am afraid to get on with my life. Does that make any sense? It's such a contradictory, eh? For so long, lung disease has allowed me to stay in the background, to move forward in life at a slow pace, but still be dependent on other people. Once i'm better, it means i'll actually have to leave the nest, I will have to find a real job, provide for myself (at some point) and the like. The thought is absolutely frightening and terrifying.
Now I know that i'm not the only one afraid of this, I'm pretty sure everyone my age is afraid of this thing, even older people who are settled probably fear this. I don't think it's a thing that can ever leave an individual, even if you have a lot of money, have a house, and don't need to worry about how you'll get on. I'm sure Oprah even worries that she'll end up on the street living in a box behind KFC.
As bizarre as it sounds, lung disease has cushioned me for so long that it's all i know. I really cannot comprehend a life without it. I look at normal people and wonder how they do things day to day, not stopping to think about their breathing, not stopping or slowing down to pace themselves. Just doing fuckall into the wind and getting on with it. Lung disease has sheltered me, has kept me from being a total asshole, from doing rediculously stupid things and the like. In an odd way, I am utterly afraid and sad to leave it, to be without it, my safe, phlegmy cushion.
I look at the things normal people do, and wonder how they've done it, and how they stay that way. And when I throw myself into the mix, I am utterly terrified.
How will I manage??
I know I will, and that I can, that's not a huge concern, it's the getting there and staying there. I wonder how many good things can people have happen to them? Getting a lung tx, being able to breathe, getting my LIFE back, AND having a job that makes enough money and allows me to live normal.
Is there too much of a good thing?? I'm afraid that if I get all that, something will be taken away, again, and I won't know how to cope again. What will I have done to deserve such greatness?
Maybe I'm crazy. Maybe I've been subjected to too much madness from the get-go that I automatically expect something good to be taken away from me because somehow I'll fuck it all up.
I hate thinking.
2) I am no longer afraid of dying.
3) I am afraid to get on with my life. Does that make any sense? It's such a contradictory, eh? For so long, lung disease has allowed me to stay in the background, to move forward in life at a slow pace, but still be dependent on other people. Once i'm better, it means i'll actually have to leave the nest, I will have to find a real job, provide for myself (at some point) and the like. The thought is absolutely frightening and terrifying.
Now I know that i'm not the only one afraid of this, I'm pretty sure everyone my age is afraid of this thing, even older people who are settled probably fear this. I don't think it's a thing that can ever leave an individual, even if you have a lot of money, have a house, and don't need to worry about how you'll get on. I'm sure Oprah even worries that she'll end up on the street living in a box behind KFC.
As bizarre as it sounds, lung disease has cushioned me for so long that it's all i know. I really cannot comprehend a life without it. I look at normal people and wonder how they do things day to day, not stopping to think about their breathing, not stopping or slowing down to pace themselves. Just doing fuckall into the wind and getting on with it. Lung disease has sheltered me, has kept me from being a total asshole, from doing rediculously stupid things and the like. In an odd way, I am utterly afraid and sad to leave it, to be without it, my safe, phlegmy cushion.
I look at the things normal people do, and wonder how they've done it, and how they stay that way. And when I throw myself into the mix, I am utterly terrified.
How will I manage??
I know I will, and that I can, that's not a huge concern, it's the getting there and staying there. I wonder how many good things can people have happen to them? Getting a lung tx, being able to breathe, getting my LIFE back, AND having a job that makes enough money and allows me to live normal.
Is there too much of a good thing?? I'm afraid that if I get all that, something will be taken away, again, and I won't know how to cope again. What will I have done to deserve such greatness?
Maybe I'm crazy. Maybe I've been subjected to too much madness from the get-go that I automatically expect something good to be taken away from me because somehow I'll fuck it all up.
I hate thinking.
Thursday, October 23, 2008
Dive-bombing dead fish
Ok, we have 2 fishtanks. One is our normal fish, the other is the tank containing the fish we just brought in from outside from our pond. There were 21 of them but as we expected, some have died. So i was in the living room gawking at the tank (contemplating cleaning it since it gets so filthy) and i see one of the fish floating around - but not at the top.
I couldn't tell if it was dead though. Its eyes weren't moving and it wasn't swimming, but every couple of seconds its mouth would open like it was breathing. I don't know exactly if this is a result of the current from the filters opening and closing the mouth or what, but i decided to observe for a little while longer. The poor other unsuspecting fish are being dive-bombed by this guy, so much to the point that when he floated up behind an unsuspecting fish i yelled, "WATCH OUT!!" So i instead went to get the fish net thing to bring it to the surface.
So i get it to the surface after wrangling it from getting stuck in a plant, and its mouth opens, i figured it's from the water so i leave the fish towards the surface for a while to watch. Nothing happens. I move in a little closer. Nothing. So i stare, to make sure it really WAS the water moving its mouth and not the fish breathing (didn't want to flush the bugger if it wasn't dead). So i'm gawking, all instense, and really close, when out of nowhere, ITS MOUTH OPENED AND ITS HEAD MOVED AND I SCREAMED LIKE A MOTHER FUCKER and pretty much dropped the fucken thing on the hardwood.
I screamed like a banshee and leapt back, instantly getting extremely out of breath, feeling my hammertrip heartbeat bang, bang bang away in the cave of my chest. It was the most disgusting, scariest thing I think i have ever faced in my house. I slammed the lid of the tank shut (lest the bugger jump out of the tank next) and left if to itself. I will just have to wait till other people come home so they can judge for themselves as to whether or not this fish is truely dead. Or dying.
So that's been my drama for the day. Oh yeah what else I went to do my driving test again (graduated liscence) and failed - fuck - b/c of some minor bullshit. GAAAAAAAAAH. It's not that i can't drive b/c I can, and it's not that i'm a bad driver b/c i'm not, I'm actually very good and have never gotten a ticket, have never hit anything or been in an accident. It was things like checking blind spots and going too slow or a little too fast - essentially bullshit since everyone does it anyways. Whatever. So i have to reschedule another one and get someone to fork out $75 for this bloody test. I'm not horribly upset to be honest. It just means i need to schedule a lesson to fix this issue of non-blindspot checkingness.
Meh.
On the health front, I am not doing to well, and I told the ppl at TGH yesterday. After i was on the bike for 13 minutes - dying - I took my sats and h/r and was astonished to see it was 89%/130 bpm. Astounding, eh? I promptly and happily got off the bike (since i hate it anyways) and informed the physio/intern person that i wasn't feeling well, which is true. The last couple of days i have been horrendously out of breath, that it's quite rediculous. I can't even get out of my car and walk into the house w/o getting massively out of breath. The other night when i rolled over i almost had to sit up to catch my breath. Walking little paces around the main floor of the house does it too. I washed the dishes other day and my dad informed me I was panting.
I am falling apart. I need lungs. LUNGS I SAY! *shakes fist*
So needless to say the ppl at physio were concerned, and it scored me an appt at Clinic next weds so we'll see how that goes. Also, I have my PFTs and meeting with the surgeon for the results of that scope I had done 2 weeks ago on Tues.
So here's to good luck and that I get a call soon, eh!
I couldn't tell if it was dead though. Its eyes weren't moving and it wasn't swimming, but every couple of seconds its mouth would open like it was breathing. I don't know exactly if this is a result of the current from the filters opening and closing the mouth or what, but i decided to observe for a little while longer. The poor other unsuspecting fish are being dive-bombed by this guy, so much to the point that when he floated up behind an unsuspecting fish i yelled, "WATCH OUT!!" So i instead went to get the fish net thing to bring it to the surface.
So i get it to the surface after wrangling it from getting stuck in a plant, and its mouth opens, i figured it's from the water so i leave the fish towards the surface for a while to watch. Nothing happens. I move in a little closer. Nothing. So i stare, to make sure it really WAS the water moving its mouth and not the fish breathing (didn't want to flush the bugger if it wasn't dead). So i'm gawking, all instense, and really close, when out of nowhere, ITS MOUTH OPENED AND ITS HEAD MOVED AND I SCREAMED LIKE A MOTHER FUCKER and pretty much dropped the fucken thing on the hardwood.
I screamed like a banshee and leapt back, instantly getting extremely out of breath, feeling my hammertrip heartbeat bang, bang bang away in the cave of my chest. It was the most disgusting, scariest thing I think i have ever faced in my house. I slammed the lid of the tank shut (lest the bugger jump out of the tank next) and left if to itself. I will just have to wait till other people come home so they can judge for themselves as to whether or not this fish is truely dead. Or dying.
So that's been my drama for the day. Oh yeah what else I went to do my driving test again (graduated liscence) and failed - fuck - b/c of some minor bullshit. GAAAAAAAAAH. It's not that i can't drive b/c I can, and it's not that i'm a bad driver b/c i'm not, I'm actually very good and have never gotten a ticket, have never hit anything or been in an accident. It was things like checking blind spots and going too slow or a little too fast - essentially bullshit since everyone does it anyways. Whatever. So i have to reschedule another one and get someone to fork out $75 for this bloody test. I'm not horribly upset to be honest. It just means i need to schedule a lesson to fix this issue of non-blindspot checkingness.
Meh.
On the health front, I am not doing to well, and I told the ppl at TGH yesterday. After i was on the bike for 13 minutes - dying - I took my sats and h/r and was astonished to see it was 89%/130 bpm. Astounding, eh? I promptly and happily got off the bike (since i hate it anyways) and informed the physio/intern person that i wasn't feeling well, which is true. The last couple of days i have been horrendously out of breath, that it's quite rediculous. I can't even get out of my car and walk into the house w/o getting massively out of breath. The other night when i rolled over i almost had to sit up to catch my breath. Walking little paces around the main floor of the house does it too. I washed the dishes other day and my dad informed me I was panting.
I am falling apart. I need lungs. LUNGS I SAY! *shakes fist*
So needless to say the ppl at physio were concerned, and it scored me an appt at Clinic next weds so we'll see how that goes. Also, I have my PFTs and meeting with the surgeon for the results of that scope I had done 2 weeks ago on Tues.
So here's to good luck and that I get a call soon, eh!
Sunday, October 19, 2008
A lesson in manners
People need to get a little fucken manners around here.
I am so sick and tired of people's blatent rudeness that it's forced me to come right out and bitch and moan to whomever is willing enough to lend me an ear, and eye, and a throat.
(btw this has nothing to do with any readers; it's every day, run-of-the-mill asshole's i'm bitching about).
To begin, I am short. I am roughly 5 feet tall. And apparently, being small is cause enough for people to be so astounded and astonished enough that God or whoever could create small people that they feel this incessant need to come right up to me and point it out. As if i don't fucking know this already!
Aside from being asked why i'm short, how 'tall' i am, if everyone else in my family is as short as me, or if i suffer from some horrible condition that renders me short (b/c being short is so horrible you know, god forbid anyone else become short during their time on Earth), or i'm i'm a midget (midgets are under 4 feet tall)it starts to become a little old.
For the most part, I let these comments roll off my shoulders and fake laugh with people when they think they're being brilliant for making me momentarily uncomfortable and horribly self-conscious as they make fun of my shortness in front of a group of people, but when people keep going and going on and on about it, it makes me begin to wonder: who's really uncomfortable with my shortness? Is it me, or is it you??
Today at my nana and papa's 60th wedding anniversary, countless people teased me about my height, and then some random old guy walked right up to me and asked as loud as possible, "why are you so short?"
Correct me if i'm wrong, but if i asked him why he is so fucking old and when did he hatch, that would be rude, wouldn't it? If i asked the 300lbs woman sitting on 2 chairs why it is that she's so fat, that would be rude?? So why is it that people feel so compelled to come up to short individuals and ask us why we're so short and if there's some horrible cause for it, that I'm the one being petty and too self-conscious if I get a little pissed off about it? This breaches the lame excuse, "I'm just curious".
B.S.
Don't get me wrong, like i said for the most part i let it slide, but it comes to a point where you begin to wonder if there is something seriously wrong with the way you look and if it's actually that bad.
So, you want a reason for why i'm short? Simply the fact that i have no structural reason for it, and that i wasn't meant to be any bigger than I am won't suffice? Ok, here it is:
I was born under a maple tree. Everyone knows that maple trees have sporous sap, and when that sap is ingested or inhaled by a newborn after birth, it stunts their growth and they never grow to be any taller than 5'. Had my mother given birth to me in a hospital setting and not under a maple tree (she went into labour with me during a picnic you know), i would have been spared such a horrible fate of shortness.
So take that for your explanation and eat it.
I am so sick and tired of people's blatent rudeness that it's forced me to come right out and bitch and moan to whomever is willing enough to lend me an ear, and eye, and a throat.
(btw this has nothing to do with any readers; it's every day, run-of-the-mill asshole's i'm bitching about).
To begin, I am short. I am roughly 5 feet tall. And apparently, being small is cause enough for people to be so astounded and astonished enough that God or whoever could create small people that they feel this incessant need to come right up to me and point it out. As if i don't fucking know this already!
Aside from being asked why i'm short, how 'tall' i am, if everyone else in my family is as short as me, or if i suffer from some horrible condition that renders me short (b/c being short is so horrible you know, god forbid anyone else become short during their time on Earth), or i'm i'm a midget (midgets are under 4 feet tall)it starts to become a little old.
For the most part, I let these comments roll off my shoulders and fake laugh with people when they think they're being brilliant for making me momentarily uncomfortable and horribly self-conscious as they make fun of my shortness in front of a group of people, but when people keep going and going on and on about it, it makes me begin to wonder: who's really uncomfortable with my shortness? Is it me, or is it you??
Today at my nana and papa's 60th wedding anniversary, countless people teased me about my height, and then some random old guy walked right up to me and asked as loud as possible, "why are you so short?"
Correct me if i'm wrong, but if i asked him why he is so fucking old and when did he hatch, that would be rude, wouldn't it? If i asked the 300lbs woman sitting on 2 chairs why it is that she's so fat, that would be rude?? So why is it that people feel so compelled to come up to short individuals and ask us why we're so short and if there's some horrible cause for it, that I'm the one being petty and too self-conscious if I get a little pissed off about it? This breaches the lame excuse, "I'm just curious".
B.S.
Don't get me wrong, like i said for the most part i let it slide, but it comes to a point where you begin to wonder if there is something seriously wrong with the way you look and if it's actually that bad.
So, you want a reason for why i'm short? Simply the fact that i have no structural reason for it, and that i wasn't meant to be any bigger than I am won't suffice? Ok, here it is:
I was born under a maple tree. Everyone knows that maple trees have sporous sap, and when that sap is ingested or inhaled by a newborn after birth, it stunts their growth and they never grow to be any taller than 5'. Had my mother given birth to me in a hospital setting and not under a maple tree (she went into labour with me during a picnic you know), i would have been spared such a horrible fate of shortness.
So take that for your explanation and eat it.
Thursday, October 16, 2008
Will it ever come?
I just got back from getting my hair 'did'. I got blonde and maple colour put in it, and i also got a bit of bangs! They look fine if i have sunglasses on or my hair up, but when my hair's down.....I look a little bit like an alien. We're not sure exactly how we feel about this yet. We'll have to consult ourselves on the matter a little later on when the shock has worn off.
Went to TGH yesterday for rehab. So far this week i've had no appts! Next week I am attempting my G driving test again (hope all my fucking exterior lights are working!) and then the week after i have a meeting with the surgeon about the results of the scope i just had, and the day after I have PFTs.
I dunno how i feel about all this testing though to be honest. Each time i get a new test scheduled I feel like it's a set back and a step back. I dunno...somehow i have an inkling that i'm put on hold almost on the list until i get these appts done....like last week - hello! - i finally got over that hurdle, felt a little closer to the finish line and a little closer to transplantland, and bam, nope, sorry, you have 2 more appts. Please try again. Do not collect $200. Do not get lungs. Stay behind the tape. Don't forget to cough.
I dunno. Maybe i'm just a miserable sod but this waiting game and this constant testing is wearing me out and getting me down and i don't like it for a bit. There were 3 transplants done over the weekend at TGH and when all the Wednesday people saw me, they were bummed b/c they were hoping i had been one of them. But no. Maybe i'm just a horrible, selfish person. I dunno.
As it stands, in this very moment, in this very little space of time, I feel like it might not ever come. And when it does, I will have waited a very long time. I hope this is not the case and that i've just had too much time to think, but it sucks feeling this way.
I can't be the only one who feels this way, can I??
Went to TGH yesterday for rehab. So far this week i've had no appts! Next week I am attempting my G driving test again (hope all my fucking exterior lights are working!) and then the week after i have a meeting with the surgeon about the results of the scope i just had, and the day after I have PFTs.
I dunno how i feel about all this testing though to be honest. Each time i get a new test scheduled I feel like it's a set back and a step back. I dunno...somehow i have an inkling that i'm put on hold almost on the list until i get these appts done....like last week - hello! - i finally got over that hurdle, felt a little closer to the finish line and a little closer to transplantland, and bam, nope, sorry, you have 2 more appts. Please try again. Do not collect $200. Do not get lungs. Stay behind the tape. Don't forget to cough.
I dunno. Maybe i'm just a miserable sod but this waiting game and this constant testing is wearing me out and getting me down and i don't like it for a bit. There were 3 transplants done over the weekend at TGH and when all the Wednesday people saw me, they were bummed b/c they were hoping i had been one of them. But no. Maybe i'm just a horrible, selfish person. I dunno.
As it stands, in this very moment, in this very little space of time, I feel like it might not ever come. And when it does, I will have waited a very long time. I hope this is not the case and that i've just had too much time to think, but it sucks feeling this way.
I can't be the only one who feels this way, can I??
Monday, October 13, 2008
Cleaning out my closet...
Thank you, Eminem.
But anyways, I was talking to Meghann lastnight and we were discussing purses. We are both so addicted to buying purses that both of us combined have probably spent enough money on them that could otherwise save a small island from sinking, or a small country from crumbling.
Anywho, at one point in our conversation about Guess purses, it inspired me to dive into my closet and hunt for my small, black one that matches my wallet. Well i looked and i ended up throwing stuff out of my closet (like textbooks from every semester at university which is essentially 4 years of classes and a rediculous amount of money!), and binders, clothes, blankets, and shoes. Finally, at the bottom, I located my my black purse, and when i turned to face my room again, i discovered that what had started as a simple attempt to located something was in reality a full-blown excavation that must be attended to immediately.
I thus blamed it all on Meghann b/c it she hadn't made me hunt for my purse, my closet would still be a giant mess and there'd still be loads of crap in it.
So today i used Thanksgiving monday (since we had ours yesterday) to clean out my shit. Like a wise patient, i refrained my using O2, I didn't take my meds before the excavation began, and I worked like a dilligent little ant to get the stuff done. 5 hours, and 5 garbage bags later and my closet is beautiful. My purses are all nicely placed on the floor with my shoes, my textbooks and binders and O2 stuff (extra tubing and the like) are all in a little trunk in the closet, and all things from the 90s (i'm not lying, and i'm so ashamed) have been thrown out and i feel like a brand new woman!
It wasn't until i was finally done that i realized how much this excavation process has worn me out, and how not using O2 or doing meds prior to it was really not a wise decision on my part. I feel exhausted; I am too tired to stand; I ate food to get my blood sugar up (since i did the excavation on a bowl of porridge and a coke - yum) but i still felt crappy.
How's this for dignifying: i sat on the tub floor to have a shower. I squeaked and was really loud but i had to do it. I didn't sit down like a delicate angel that I am, i stumbled and half fell in the tub, and i slipped and slided and was practically bouncing. I couldn't stand bc i was huffing and puffing and just felt so terrible. I was coughing and phlegming all over the place and it was just ugh, disgusting. I ran out of soap and eventually, after dropping it 2 times, let it go down the drain. It was rediculous.
It was not the most dignifying thing I have ever done, but it was probably the fastests shower I've ever had!
But anyways, I was talking to Meghann lastnight and we were discussing purses. We are both so addicted to buying purses that both of us combined have probably spent enough money on them that could otherwise save a small island from sinking, or a small country from crumbling.
Anywho, at one point in our conversation about Guess purses, it inspired me to dive into my closet and hunt for my small, black one that matches my wallet. Well i looked and i ended up throwing stuff out of my closet (like textbooks from every semester at university which is essentially 4 years of classes and a rediculous amount of money!), and binders, clothes, blankets, and shoes. Finally, at the bottom, I located my my black purse, and when i turned to face my room again, i discovered that what had started as a simple attempt to located something was in reality a full-blown excavation that must be attended to immediately.
I thus blamed it all on Meghann b/c it she hadn't made me hunt for my purse, my closet would still be a giant mess and there'd still be loads of crap in it.
So today i used Thanksgiving monday (since we had ours yesterday) to clean out my shit. Like a wise patient, i refrained my using O2, I didn't take my meds before the excavation began, and I worked like a dilligent little ant to get the stuff done. 5 hours, and 5 garbage bags later and my closet is beautiful. My purses are all nicely placed on the floor with my shoes, my textbooks and binders and O2 stuff (extra tubing and the like) are all in a little trunk in the closet, and all things from the 90s (i'm not lying, and i'm so ashamed) have been thrown out and i feel like a brand new woman!
It wasn't until i was finally done that i realized how much this excavation process has worn me out, and how not using O2 or doing meds prior to it was really not a wise decision on my part. I feel exhausted; I am too tired to stand; I ate food to get my blood sugar up (since i did the excavation on a bowl of porridge and a coke - yum) but i still felt crappy.
How's this for dignifying: i sat on the tub floor to have a shower. I squeaked and was really loud but i had to do it. I didn't sit down like a delicate angel that I am, i stumbled and half fell in the tub, and i slipped and slided and was practically bouncing. I couldn't stand bc i was huffing and puffing and just felt so terrible. I was coughing and phlegming all over the place and it was just ugh, disgusting. I ran out of soap and eventually, after dropping it 2 times, let it go down the drain. It was rediculous.
It was not the most dignifying thing I have ever done, but it was probably the fastests shower I've ever had!
Saturday, October 11, 2008
Endoscopy= Not fun
When was the last time I wrote? God knows i've lost my brain.
I beleive I wrote on Weds after i got my tubey thingy pulled. Thurs was great: had nothing planned and i loved it.
Friday I had to be back at TGH for an Endoscopy. I couldn't eat from midnight on. Endoscopy was scheduled at 11:30 am and we were instructed to be there at 10:30 am. Traffic on the way to TO was great. We made it in 40 minutes so we were super early. The hosp in and of itself (the main floor anyways) smells entirely of food, so as we waited my stomach grumbled and i was very cranky. My mum wouldn't let me even have water.
So we go to the 2nd floor for the scope. We wait. The chick called me to go back and addressed me as "Brian". I refrained from physically assaulting her and yelling that she learn to read a little better, and I really resisted the urge to smack her when i was informed i'd have to put a hospital gown on. So i change, and I wait, and then they come to give me an IV. I told them my veins were crap and they didn't beleive me, but when the first IV went in and the vein blew, they realized it. I told them about my No Zone - my hands - and of coure the IV lady went there. I was mad and she told me that i shouldn't be so upset since it was the only vein i had left. Yeah well, you used it and broke it and now it won't work when i go for my regular IV next week. *Hmph*.
Um...so i get wheeled back to the room and they give me this nasty stuff to gurgle twice, and then swallow. I felt like my tongue had swelled to mammoth proportions, and then they injected me with anasthetic and i went out. I was kind of awake when it was done. I remember the nurse (a nicer one) putting my pager in my hand. I looked at the clock and it said 12:30. When i woke up again it was 1:30 and i was informed that they had forgotten about me and left me and that I had been there too long. I felt alright until i stood up. I was all dizzy to walk and couldn't walk in a straight line. Every question that was asked of me recieved the answer of "Yeaaaaaaaaaaah" and that was in.
It was hard to put my clothes back on. My limbs felt really heavy and apparently i farted the whole time i got dressed. They informed me that they pumped air in my stomach (since they were looking at my esophagus/stomach). The only finding i was told about was Thrush in my throat, which i'm assuming is from Advair. Other than that things looked great. The ride home i felt a little sick to my stomach and wasn't the best person to have an intelligent conversation with. At one point i announced to my mum that "It's nice and warm for December..." to which she replied, "It's October." I called my dad too and he thought something was seriously wrong with me. I guess you shouldn't call ppl as anasthetic wears off. Oh well.
I wasn't even hungry when i was allowed to eat since i had to swallow numbing stuff, so i couldn't feel my hunger anyways. I had a coke and finally had a cheese tea biscuit from Timmies at 4pm. SO i went from eating at 11:30pm Thurs night to 4:30pm Friday afternoon. Wonderful.
I more than made up for it at Krystals Thanksgiving though last night! I wasn't allowed to drive however so I got a ride and i ate like a fiend. I can proudly say i slept soundly as i slipped into a diabetic/anasthetic coma for the night. I feel like a pig and i feel much better today! My throat is sore and it hurts to swallow when i eat but oh well! Mum and I went to the grocery store to get food for Thanksgiving tomorrow (when we have everyone over, even though it's on Monday) and of course I ran into a teacher from high school who i had a chat with. And of course i looked like a total homeless person in my sweatpants and t-shirt. Oh well.
Other than that, things are good. I feel like crap b/c of the Tobi but oh well. Hopefully i get called soon. Say a prayer/good thought for ROSIE who is in the hosp! Hope you get well soon and they figure out what you had/have!!!
Bye people.
I beleive I wrote on Weds after i got my tubey thingy pulled. Thurs was great: had nothing planned and i loved it.
Friday I had to be back at TGH for an Endoscopy. I couldn't eat from midnight on. Endoscopy was scheduled at 11:30 am and we were instructed to be there at 10:30 am. Traffic on the way to TO was great. We made it in 40 minutes so we were super early. The hosp in and of itself (the main floor anyways) smells entirely of food, so as we waited my stomach grumbled and i was very cranky. My mum wouldn't let me even have water.
So we go to the 2nd floor for the scope. We wait. The chick called me to go back and addressed me as "Brian". I refrained from physically assaulting her and yelling that she learn to read a little better, and I really resisted the urge to smack her when i was informed i'd have to put a hospital gown on. So i change, and I wait, and then they come to give me an IV. I told them my veins were crap and they didn't beleive me, but when the first IV went in and the vein blew, they realized it. I told them about my No Zone - my hands - and of coure the IV lady went there. I was mad and she told me that i shouldn't be so upset since it was the only vein i had left. Yeah well, you used it and broke it and now it won't work when i go for my regular IV next week. *Hmph*.
Um...so i get wheeled back to the room and they give me this nasty stuff to gurgle twice, and then swallow. I felt like my tongue had swelled to mammoth proportions, and then they injected me with anasthetic and i went out. I was kind of awake when it was done. I remember the nurse (a nicer one) putting my pager in my hand. I looked at the clock and it said 12:30. When i woke up again it was 1:30 and i was informed that they had forgotten about me and left me and that I had been there too long. I felt alright until i stood up. I was all dizzy to walk and couldn't walk in a straight line. Every question that was asked of me recieved the answer of "Yeaaaaaaaaaaah" and that was in.
It was hard to put my clothes back on. My limbs felt really heavy and apparently i farted the whole time i got dressed. They informed me that they pumped air in my stomach (since they were looking at my esophagus/stomach). The only finding i was told about was Thrush in my throat, which i'm assuming is from Advair. Other than that things looked great. The ride home i felt a little sick to my stomach and wasn't the best person to have an intelligent conversation with. At one point i announced to my mum that "It's nice and warm for December..." to which she replied, "It's October." I called my dad too and he thought something was seriously wrong with me. I guess you shouldn't call ppl as anasthetic wears off. Oh well.
I wasn't even hungry when i was allowed to eat since i had to swallow numbing stuff, so i couldn't feel my hunger anyways. I had a coke and finally had a cheese tea biscuit from Timmies at 4pm. SO i went from eating at 11:30pm Thurs night to 4:30pm Friday afternoon. Wonderful.
I more than made up for it at Krystals Thanksgiving though last night! I wasn't allowed to drive however so I got a ride and i ate like a fiend. I can proudly say i slept soundly as i slipped into a diabetic/anasthetic coma for the night. I feel like a pig and i feel much better today! My throat is sore and it hurts to swallow when i eat but oh well! Mum and I went to the grocery store to get food for Thanksgiving tomorrow (when we have everyone over, even though it's on Monday) and of course I ran into a teacher from high school who i had a chat with. And of course i looked like a total homeless person in my sweatpants and t-shirt. Oh well.
Other than that, things are good. I feel like crap b/c of the Tobi but oh well. Hopefully i get called soon. Say a prayer/good thought for ROSIE who is in the hosp! Hope you get well soon and they figure out what you had/have!!!
Bye people.
Thursday, October 9, 2008
Dreams last for so long, even after they're gone...
I had a dream this morning that I got the call, and this time I had more time to get to the hosp. Remember my last dream where I got the call and was informed that I had 10 minutes to get to the hosp (and the stupid girl on the other line tried to have a conversation with me?) well, today, in my dream, I was given the luxery of having a whole 12 hours to get to the hosp. In my dream, I got the call at 7:30am and had until "19:30" to get there, which would make it 7:30PM. Pretty cool eh?
Got the tube removed yesterday! Having the tape pulled off my face hurt more than the tube slithering out of my nose! YAY! I was able to eat like a normal human being again and it thrilled me beyong all comprehension of ever being thrilled. As i write this I have a small pain in the left side of my chest. I tell myself it's pleurisy but more or less i will later on hate myself for blatently disregarding the early signs of heart attack as they happen to me. Oh well.
So yes, the tube experience went good. Wasn't too bothersome, though my throat was sore yesterday and is still a tad sore but nothing horrible. It gave me an excuse to consume mass amounts of freezies so that's always cool. After I got the tube pulled, dad and I went to TGH for physio, which was grand, and then we crossed the street to Sick Kids for my twice yearly check up, which went grand as well! YAY!
I was checked over by the doc, and she felt my throat, listened to my lungs, took my med list, and blah blah. She was a little alarmed to discover a 'small hemmorage' (say in Quebec french accent) in the back of my throat, as my glands weren't swollen. I reminded her that I just did a 24 hour pH probe test and had a tube down my throat, and she connected the two and said that my throat no doubt bled a little by the placing of the tube (which also accouts for the pain). So that's good. Considering the fact that i gagged and choked and vommited and died all over the place, having a small hemmorage in my throat isn't too bad.
Again the docs told me that they expect a great outcome from the tx. I will be the first person to ever get a tx who has no immune system (i'm a pioneer damnitt!) so that's exciting. They said that it's clear to them that there is no other option than this (as i clearly remember being told 2 years ago that lung tx would never be an option for me), so i felt validated again in my decision to pursue this choice of treatment.
The docs wanted to know my recent course of antibiotics. I riddled off my list (Tobi, then Cipro, then Suprax, then Tetracycline). I told them that I go off them and 2 weeks later am sick and phlegmy again. This got me a one way ticket to a now 'always' course of Tobi (grr). I will take Tobi the same way and in the same manner (continuous) as i take Septra and Zithromax. I wasn't thrilled but this prospect as Tobi is time consuming to take, but i got an order placed in for new neb cups and I also scored some new prescriptions, which I can't complain about.
That's about it. It's a gorgeous day out today and will be a gorgeous weekend for Thanksgiving! I am having Thanksgiving with the girlies tomorrow so that is tres exciting. My camera will hopefully be in by then and i can get some pics of us and our 'bounty'. Today I am not in TO, but I will be tomorrow as i have a scope of my espophagus.
Um...yeah. That's it.
Have a lovely day!!!
Got the tube removed yesterday! Having the tape pulled off my face hurt more than the tube slithering out of my nose! YAY! I was able to eat like a normal human being again and it thrilled me beyong all comprehension of ever being thrilled. As i write this I have a small pain in the left side of my chest. I tell myself it's pleurisy but more or less i will later on hate myself for blatently disregarding the early signs of heart attack as they happen to me. Oh well.
So yes, the tube experience went good. Wasn't too bothersome, though my throat was sore yesterday and is still a tad sore but nothing horrible. It gave me an excuse to consume mass amounts of freezies so that's always cool. After I got the tube pulled, dad and I went to TGH for physio, which was grand, and then we crossed the street to Sick Kids for my twice yearly check up, which went grand as well! YAY!
I was checked over by the doc, and she felt my throat, listened to my lungs, took my med list, and blah blah. She was a little alarmed to discover a 'small hemmorage' (say in Quebec french accent) in the back of my throat, as my glands weren't swollen. I reminded her that I just did a 24 hour pH probe test and had a tube down my throat, and she connected the two and said that my throat no doubt bled a little by the placing of the tube (which also accouts for the pain). So that's good. Considering the fact that i gagged and choked and vommited and died all over the place, having a small hemmorage in my throat isn't too bad.
Again the docs told me that they expect a great outcome from the tx. I will be the first person to ever get a tx who has no immune system (i'm a pioneer damnitt!) so that's exciting. They said that it's clear to them that there is no other option than this (as i clearly remember being told 2 years ago that lung tx would never be an option for me), so i felt validated again in my decision to pursue this choice of treatment.
The docs wanted to know my recent course of antibiotics. I riddled off my list (Tobi, then Cipro, then Suprax, then Tetracycline). I told them that I go off them and 2 weeks later am sick and phlegmy again. This got me a one way ticket to a now 'always' course of Tobi (grr). I will take Tobi the same way and in the same manner (continuous) as i take Septra and Zithromax. I wasn't thrilled but this prospect as Tobi is time consuming to take, but i got an order placed in for new neb cups and I also scored some new prescriptions, which I can't complain about.
That's about it. It's a gorgeous day out today and will be a gorgeous weekend for Thanksgiving! I am having Thanksgiving with the girlies tomorrow so that is tres exciting. My camera will hopefully be in by then and i can get some pics of us and our 'bounty'. Today I am not in TO, but I will be tomorrow as i have a scope of my espophagus.
Um...yeah. That's it.
Have a lovely day!!!
Tuesday, October 7, 2008
Gastic Test so far a success!!!
Yup, that rhymed!
I am pleased to inform you that so far, the gastric test has been a success. After having it placed at roughly 9am, the tube still remains up my nose and it's not as horrible as it was the first time around! You will be pleased to know that I reprised my role as difficult patient, as I choked and gagged and vomitted and died all over the place as the tube was being placed. I gagged so violently at one point that I think the technician almost vomitted in sympathetic response to me. That's how magical the experience was.
In total, it took a whole hour to get the tube up my nose. I will go back to TO to get it taken out at 8:30 am tomorrow, and then I will go to TGH for physio, and then Sick Kids for blood, and then back home. Friday morning I have to be back at TGH for a scope of my esophagus (they're making extra sure i'm not completely messed up apparently) and will be partially knocked out for that, and will thus be unable to do a repeat of today's violent esophageal episode. In total, Friday makes 4 out of 5 days spent in TO!!!! GAH!
So that's it really. Hopefully after all this I can and will get the call! Here's hoping!
The tube at the back of my throat isn't too horribly uncomfortable. I mean, I can feel it in there. It feels rather like you have post-nasal drip (for those not in the know, that's when snot from ur sinuses drips into your lungs). It feels rather like when you have a hard chunk of snot lodged in there and you're trying to get it up and out. I can eat a lot easier than I could the first go around, though if i eat a huge chunk of food the tube will pull which makes my nose hurt. As a result, i'm eating smaller things. It's weird, b/c if i open my mouth and look at my epigoltus (that's the hangy thing at the back of your throat, people!) i can see the tube dangling down. I try not to look at it as it makes me want to vomit.
That is all people. I shall update tomorrow. I have to wake up again at 5 am tomorrow. UGH!
I am pleased to inform you that so far, the gastric test has been a success. After having it placed at roughly 9am, the tube still remains up my nose and it's not as horrible as it was the first time around! You will be pleased to know that I reprised my role as difficult patient, as I choked and gagged and vomitted and died all over the place as the tube was being placed. I gagged so violently at one point that I think the technician almost vomitted in sympathetic response to me. That's how magical the experience was.
In total, it took a whole hour to get the tube up my nose. I will go back to TO to get it taken out at 8:30 am tomorrow, and then I will go to TGH for physio, and then Sick Kids for blood, and then back home. Friday morning I have to be back at TGH for a scope of my esophagus (they're making extra sure i'm not completely messed up apparently) and will be partially knocked out for that, and will thus be unable to do a repeat of today's violent esophageal episode. In total, Friday makes 4 out of 5 days spent in TO!!!! GAH!
So that's it really. Hopefully after all this I can and will get the call! Here's hoping!
The tube at the back of my throat isn't too horribly uncomfortable. I mean, I can feel it in there. It feels rather like you have post-nasal drip (for those not in the know, that's when snot from ur sinuses drips into your lungs). It feels rather like when you have a hard chunk of snot lodged in there and you're trying to get it up and out. I can eat a lot easier than I could the first go around, though if i eat a huge chunk of food the tube will pull which makes my nose hurt. As a result, i'm eating smaller things. It's weird, b/c if i open my mouth and look at my epigoltus (that's the hangy thing at the back of your throat, people!) i can see the tube dangling down. I try not to look at it as it makes me want to vomit.
That is all people. I shall update tomorrow. I have to wake up again at 5 am tomorrow. UGH!
Friday, October 3, 2008
Gastric motility test, fuck you, we meet again
And so it begins - again.
Once again I have to do that stupid fucking gastric motility test. Remember the one that tried to kill me, where they put that fucking tube down your nose and it choked and strangled me, and i was crying and vomitting and dying all over the place? Yeah, that one. Me and it have a date on Tues at 8:45am for 24 hours. I hope it's not as horrible as last time.
Don't get me wrong; this isn't voluntary by any means. You can be assured that I gave the doctor particularly evil glances and a raised eyebrow for the entire duration of my appt on Weds. My dad wasn't happy that i wasn't be co-operative; the doc was amused; i was on the verge of tears and going on a rampage.
The doc told me that when i had it done the test must have been ' a red herring'. In other words: they fucked up. The barium test showed that i have no issues swallowing FOOD (you pervert, amy you!), but they have to do the gastric again to check out the heart burn dealio so........Fuck.
This means that I will be in TO Mon, Tues, and Weds with my dad. I got my Sick Kids appt bumped up to Weds instead of going on the 15th so that's good. I will be carpooling with Scottish Dave on the 15th so that's great, wonderful, fantastic, amazing. No bus for me, so I can't complain.
I met a newly listed lung tx person on Weds. Graham is his name. He's very nice, and he made me laugh when he heard me cough. I coughed and he looked astonished at the sound and goes, "Man that's horrible! Can you take anything for it?" I tried not to shit my pants laughing at this. I looked at him and said, "Trust me, I'm on everything you could possibly be on and it doesn't work." He asked me what I was taking and I promply reeled my list to him, which thus made him more astonished. I'm not upset that nothing works to be honest. Actually, i rally off my med list with pride and I glow from the inside as their faces change from interest to pure amazement. I know my cough is completely disgusting; i know it can clear an elevator if i wanted it to. I know that, and I'm ok. I'll keep rockin' the gross cough until it's time for the lungs to come.
Of course on Weds i saw a lot of hot interns. Really hot if we're to be honest. They were crawling all over the hospital. Too bad i had oxygen with me or else i wouldn't have been opposed to attracting any of the guys to my aid. Oh well. Havent seen McIntern since he departed back in May. Oh well. For the most part I hate interns, you know that. But i love the male interns, make no mistake. I shouldn't keep going on about them however since it makes me sound like a preditor almost.
Well here's a good looking fellow (Henry Cavill, *drool*) before I depart for the day. He's from the Tudors and he's gorgeous. He's so hot i bet he gets women pregnant just by standing next to them:
Oh Sir Charles Brandon....I love you so...If only you weren't a man-whore...
Mmmm............
Once again I have to do that stupid fucking gastric motility test. Remember the one that tried to kill me, where they put that fucking tube down your nose and it choked and strangled me, and i was crying and vomitting and dying all over the place? Yeah, that one. Me and it have a date on Tues at 8:45am for 24 hours. I hope it's not as horrible as last time.
Don't get me wrong; this isn't voluntary by any means. You can be assured that I gave the doctor particularly evil glances and a raised eyebrow for the entire duration of my appt on Weds. My dad wasn't happy that i wasn't be co-operative; the doc was amused; i was on the verge of tears and going on a rampage.
The doc told me that when i had it done the test must have been ' a red herring'. In other words: they fucked up. The barium test showed that i have no issues swallowing FOOD (you pervert, amy you!), but they have to do the gastric again to check out the heart burn dealio so........Fuck.
This means that I will be in TO Mon, Tues, and Weds with my dad. I got my Sick Kids appt bumped up to Weds instead of going on the 15th so that's good. I will be carpooling with Scottish Dave on the 15th so that's great, wonderful, fantastic, amazing. No bus for me, so I can't complain.
I met a newly listed lung tx person on Weds. Graham is his name. He's very nice, and he made me laugh when he heard me cough. I coughed and he looked astonished at the sound and goes, "Man that's horrible! Can you take anything for it?" I tried not to shit my pants laughing at this. I looked at him and said, "Trust me, I'm on everything you could possibly be on and it doesn't work." He asked me what I was taking and I promply reeled my list to him, which thus made him more astonished. I'm not upset that nothing works to be honest. Actually, i rally off my med list with pride and I glow from the inside as their faces change from interest to pure amazement. I know my cough is completely disgusting; i know it can clear an elevator if i wanted it to. I know that, and I'm ok. I'll keep rockin' the gross cough until it's time for the lungs to come.
Of course on Weds i saw a lot of hot interns. Really hot if we're to be honest. They were crawling all over the hospital. Too bad i had oxygen with me or else i wouldn't have been opposed to attracting any of the guys to my aid. Oh well. Havent seen McIntern since he departed back in May. Oh well. For the most part I hate interns, you know that. But i love the male interns, make no mistake. I shouldn't keep going on about them however since it makes me sound like a preditor almost.
Well here's a good looking fellow (Henry Cavill, *drool*) before I depart for the day. He's from the Tudors and he's gorgeous. He's so hot i bet he gets women pregnant just by standing next to them:
Oh Sir Charles Brandon....I love you so...If only you weren't a man-whore...
Mmmm............
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