I had a friend , a cf friend this week decide they dont want transplant and I honestly dont no what to say to them. Not getting a transplant never came into my head, it was just a matter of when I needed to get signed up. It was after my major , life threatening lung collapse of last year that I automatically started getting signed up for lung transplant assessment. I just never wanted to feel that BAD ever again. I was exhausted I went to bed like any other night , and at midnightish, woke up not being able to breathe, i couldnt walk, talk, nothing...i started panicing, i didnt no what was wrong or what to do. Thankfully my dad heard me and 911 was called from there. It was terrifing. Also because when I got to the ER in my area they really didnt no what to do, or what was the matter. It took them over 2 hours to get a chest tube into me..for those 2 hours i had alarms going off everywhere, my heart rate was out of control, my o2 was insanely low, i couldnt ly down or sit up, i was in a weird hunched over postion, and they couldnt turn the o2 up afraid it would pop my other lung. I think its almost a good thing it happened. Because I NO how terrifying it is. I dont want to die that way. Sufficating!
So when this friend of mine tells me ..shes out.. she"ll just live the best she can till the end. I dont no what to say. They've given u a choice... "maybe die" or "die" and you choice die? I dont understand it. We are all fighters...we have fought our entire lives...and to just give up...it seems ...soo wrong. I no its such a personal decision...but I just cant understand ..why anyone would chooose to go out...like that. coughing..sufficating..terrifying...i dont understand.
Sunday, January 30, 2011
Friday, January 21, 2011
The big one..
So I’ve never really ever been religious. My parents are both Christian, but my mother is catholic and my dad is Presbyterian. They both haven’t been to church literally since their wedding. Needless to say they are not the most religious people you have ever met. My grandmother use to( and still does occasionally) take us to church as kids, but that was only when her and my grandfather were around and even then it would either be their church in Cambridge or one of the 3 churches of different religions that reside in my tiny community. YES a town of less than 2000 people and we have 3 different churches, all within 2 blocks of each other.
I never liked the Presbyterian Church in my community every time I have ever gone I wasn’t treated that well, honestly. You’d either be completely ignored or I had people say some snippy comments to me for not coming to church on a regular basis, considering as they said, that I just lived around the block. I didn’t find this very welcoming and stopped going because of it.
I’m talking about religion though because I guess I found some comfort in it this week. This is new for me, usually I can’t relate or I see no point. When I was watching the funeral for Sgt. Russell, the police officer that was killed last week, certain things the minister was saying actually made sense to me.
I’ve never read the bible, though I do have one sitting in my room. My family claims we don’t really know what to believe. We don’t say grace before we eat, we don’t pray before we go to bed, and we don’t go to church. I guess to some families we’d be complete sinners. I don’t know. My sister and I claim we aren’t that religious, though we have a Blessed Jesus hanging in our kitchen at our apartment. Also on more than one occassion Ive done the sign of the cross and repeted "In the name of the father,and the son and the holy sprit . Amen" so if im not catholic am I insulting someone?? Because in some ways I wanted to become catholic, it seems like it had more to it then just singing. I DONT know basically. I believe there is something after all of this, I can’t contemplate that there couldn’t be. I’m terrified of dying, but somehow some of what was said was comforting and I finally understand why people call priest in when they’re dying. I understand. It gives you comfort to know what could happen. I need to keep thinking about this and it is a heavy subject to talk about with anyone so heres to hoping I don’t offend anyone ....
I never liked the Presbyterian Church in my community every time I have ever gone I wasn’t treated that well, honestly. You’d either be completely ignored or I had people say some snippy comments to me for not coming to church on a regular basis, considering as they said, that I just lived around the block. I didn’t find this very welcoming and stopped going because of it.
I’m talking about religion though because I guess I found some comfort in it this week. This is new for me, usually I can’t relate or I see no point. When I was watching the funeral for Sgt. Russell, the police officer that was killed last week, certain things the minister was saying actually made sense to me.
I’ve never read the bible, though I do have one sitting in my room. My family claims we don’t really know what to believe. We don’t say grace before we eat, we don’t pray before we go to bed, and we don’t go to church. I guess to some families we’d be complete sinners. I don’t know. My sister and I claim we aren’t that religious, though we have a Blessed Jesus hanging in our kitchen at our apartment. Also on more than one occassion Ive done the sign of the cross and repeted "In the name of the father,and the son and the holy sprit . Amen" so if im not catholic am I insulting someone?? Because in some ways I wanted to become catholic, it seems like it had more to it then just singing. I DONT know basically. I believe there is something after all of this, I can’t contemplate that there couldn’t be. I’m terrified of dying, but somehow some of what was said was comforting and I finally understand why people call priest in when they’re dying. I understand. It gives you comfort to know what could happen. I need to keep thinking about this and it is a heavy subject to talk about with anyone so heres to hoping I don’t offend anyone ....
Tuesday, January 18, 2011
OOOO books
Book # 4 of romance string. I know how they all end, Happily Ever After. The girl can be one giant moron in the beginning sometimes though. I love Julie Garwood but sometimes i just have to put the book down and shake my head. The girls are always giant airheads and the men are always just plain Giant. Hes always towering over her and the most muscular of the guys, always doesnt talk much but she "knows" what he means. It just makes me start anazying there relationship haha and how much miscommunication is going on and that is one of the biggest reasons I have to put these books down. Im start thinking OOOO im sure you know what hes thinking, sure you do . But maybe thats just my old bitter-ish self talking.
I watched the Toronto Sgt. police funeral today on tv. I had to walk away other wise I was going to cry in front of my parents and they would have thought I'd lost my marbles. I just feel so bad for his wife and child. Had to walk away.
Im not really a crier in front of people. I don't like it. Makes me feel weak. I know thats a pretty lame excuse but its the truth, I want people to know I can handle things, like this life, the truth about everything...you cant really have that if your always breaking down. Given Predisone makes me crazy some days , makes my moods go all over the place I feel like im 12 years old all over again and being hormonally out of balance. I really feel bad when I do crack at people because its usually huge.
im currently crushing my urge to text my ex. I made the mistake of talking to him. Im now going back to checking days off that I dont talk to him. Its been soo long now. 2 years in april literally. Over a year since ive seen him. I want to know how everyone else does it? how are they not this lonely at times? espeically with all this stuff going on? hmmm Im not depressed granted, just venting so I dont do something and try to talk to someone who doesnt care, and it just feeds his ego that i still might want him.
I watched the Toronto Sgt. police funeral today on tv. I had to walk away other wise I was going to cry in front of my parents and they would have thought I'd lost my marbles. I just feel so bad for his wife and child. Had to walk away.
Im not really a crier in front of people. I don't like it. Makes me feel weak. I know thats a pretty lame excuse but its the truth, I want people to know I can handle things, like this life, the truth about everything...you cant really have that if your always breaking down. Given Predisone makes me crazy some days , makes my moods go all over the place I feel like im 12 years old all over again and being hormonally out of balance. I really feel bad when I do crack at people because its usually huge.
im currently crushing my urge to text my ex. I made the mistake of talking to him. Im now going back to checking days off that I dont talk to him. Its been soo long now. 2 years in april literally. Over a year since ive seen him. I want to know how everyone else does it? how are they not this lonely at times? espeically with all this stuff going on? hmmm Im not depressed granted, just venting so I dont do something and try to talk to someone who doesnt care, and it just feeds his ego that i still might want him.
Friday, January 14, 2011
Oh Nonsense
Oh today and yesterday have been fantastic. A bit of normalie ( i realise this isn't spelt right, but for the life of me can not remember how to spell this word and my sister does not have word on this computer lol) , I'm at the moment at my sisters appartment, Ive had enough energy in the last 2 days to actually do some stuff. I went to pretransplant exercise yesterday in orillia, I hungout with my old bittes, aka 65-80 year old men. They are hilarious I have to say, they gossip worse than women. Plus its like 1940's attutide and I'm pretty much expected to sit there and be quiet as im "a girl". There not all backwards and there two guys there I regularly talk to, they all are on city counsils and what have you, so honesty they know all the bylaws etc, stuff I don't know. So i have a good time asking them questions. The one guy always starts with " So i was in the army..." hahahna i've heard so many army stories now its hilarious, and his poor wife lol hes always saying how she doesnt no how to do things haha aww.
Anyways I thought I'd share that I met a Doctor who was named Dr. Thesaurus, want to bet that's not his only name? hahahaha. I do feel bad for him though, imagine how many times people have said this to him. Other than that I'll filling my head full of nonsense and reading romance novels. I haven't in a long time and it just seems like a good day to read a book with zero plot, unrealistic characters and fluffy story lines lol I love it. Actually my favourite line of all time from a romance novel was one from Julie Garwood, one of her books I think it was "the wedding" anyways theres a line in it when the characters meet and it says " he was so big he blocked out the sun" BAHAHHAAH its classic. Then you wonder just how short this women is haha..i love it. Who doesnt like a book which has a happy ending you can see happening from page 1 lol <3 it
Anyways I thought I'd share that I met a Doctor who was named Dr. Thesaurus, want to bet that's not his only name? hahahaha. I do feel bad for him though, imagine how many times people have said this to him. Other than that I'll filling my head full of nonsense and reading romance novels. I haven't in a long time and it just seems like a good day to read a book with zero plot, unrealistic characters and fluffy story lines lol I love it. Actually my favourite line of all time from a romance novel was one from Julie Garwood, one of her books I think it was "the wedding" anyways theres a line in it when the characters meet and it says " he was so big he blocked out the sun" BAHAHHAAH its classic. Then you wonder just how short this women is haha..i love it. Who doesnt like a book which has a happy ending you can see happening from page 1 lol <3 it
Wednesday, January 12, 2011
To A certain SOMEONE
To a certain person who texted me today, you know who you are, and I doubt you’ll read this, but you never know:
So this is where I try to keep on my big girl pants and not go vividly, and wildly screaming into a certain friends face. The last couple days have been very trying with my emotions and I’m starting to think some of my reactions could just be ruled out as the forlorn “roid-rage” as they call it. However, some of my reactions I believe are completely called for in these situations.
Today I’ve literally done nothing except wake up, go on facebook, and text a couple people, yet I am now still in a situation where I want to “kick ass”. When I’m told I’m a total stalker for being on facebook so much, or that I should be out doing something, I’m going to get mad. When I’m told that I should just, and I quote “ suck it up”, and go do what everyone else is doing, cause there’s no reason I shouldn’t be, well let’s just say, I didn’t take those statements all too well.
First this is my only day off from doctors appointments and all things transplant, I wake up late, I eat late and I don’t plan on doing much today, maybe take a nap and try to feel a bit better. Yes I am bored, with transplant I miss working and going to school, I miss my social life. This doesn’t mean I’m going to go jump in my car and go running around all over the place just because ONE person thinks I should be. Makes me want to yell “DUMBASS” in his face and say “ok so ill sit on your chest, strangle you and then you get up and go run upstairs, we’ll see how you do”.
I won’t except dumb comments anymore, I’ve explained to my close friends what’s going on with me a million times over now, if you can’t figure out I can’t go run a marathon right now, well honestly you’re a dumbass. I don’t care if it isn’t “cool” that I don’t have plans on Friday night, or that I haven’t gotten “drunk” in forever. I don’t care if I’m not dating and I certainly don’t care what I “should be doing”. I’m not doing it, that doesn’t make me a loser or out of the “group”, it makes me incredibly sick and dealing with what I have to survive. I do what I can to stay entertained and keep everything “normal” I didn’t think I had to prove that to certain people.
Everyone else has been fantastic I couldn’t ask for better friends or family. A couple people though are dumb and if the most important fact in your life is getting drunk and you can’t see life without booze sorry to inform you but you sound like an alcoholic, and PS you’re out of college now, it isn’t “kool” to get drunk every other day. Grow up.
So this is where I try to keep on my big girl pants and not go vividly, and wildly screaming into a certain friends face. The last couple days have been very trying with my emotions and I’m starting to think some of my reactions could just be ruled out as the forlorn “roid-rage” as they call it. However, some of my reactions I believe are completely called for in these situations.
Today I’ve literally done nothing except wake up, go on facebook, and text a couple people, yet I am now still in a situation where I want to “kick ass”. When I’m told I’m a total stalker for being on facebook so much, or that I should be out doing something, I’m going to get mad. When I’m told that I should just, and I quote “ suck it up”, and go do what everyone else is doing, cause there’s no reason I shouldn’t be, well let’s just say, I didn’t take those statements all too well.
First this is my only day off from doctors appointments and all things transplant, I wake up late, I eat late and I don’t plan on doing much today, maybe take a nap and try to feel a bit better. Yes I am bored, with transplant I miss working and going to school, I miss my social life. This doesn’t mean I’m going to go jump in my car and go running around all over the place just because ONE person thinks I should be. Makes me want to yell “DUMBASS” in his face and say “ok so ill sit on your chest, strangle you and then you get up and go run upstairs, we’ll see how you do”.
I won’t except dumb comments anymore, I’ve explained to my close friends what’s going on with me a million times over now, if you can’t figure out I can’t go run a marathon right now, well honestly you’re a dumbass. I don’t care if it isn’t “cool” that I don’t have plans on Friday night, or that I haven’t gotten “drunk” in forever. I don’t care if I’m not dating and I certainly don’t care what I “should be doing”. I’m not doing it, that doesn’t make me a loser or out of the “group”, it makes me incredibly sick and dealing with what I have to survive. I do what I can to stay entertained and keep everything “normal” I didn’t think I had to prove that to certain people.
Everyone else has been fantastic I couldn’t ask for better friends or family. A couple people though are dumb and if the most important fact in your life is getting drunk and you can’t see life without booze sorry to inform you but you sound like an alcoholic, and PS you’re out of college now, it isn’t “kool” to get drunk every other day. Grow up.
Monday, January 10, 2011
SO PISSED
So my afternoon consisted of me sitting at TGH, which wasnt a problem until I got in to see the doctor and he confirmed what I was scared of. That my pfts are INDEED wrong within there system. I thought of this before the christmas holiday when I realised that ive only EVER had one pfts test at TGH, my other one was booked when i was admitted into st.mikes and the other was a freakin snow day soo ...im stuck in this situation where tgh has numbers from last MAY when I was walking around peachy keen without o2 and sitting at a good 40% lung function. I asked doesnt st.mikes send over pfts? and yes they do when they get a request. KEY in retarded transplant coorindar and VOLia, DING DING DING we have found my problem. TO be honest I like the women when I met her I thought she was nice, smart, put together, organized, since that first meeting im seriously considering she has none of thoses skills.
I CALLED HER before christmas and told her my "FEAR" that my pfts were not up to date and that if lungs came up they would overlook me because my file says "im stable and at 40%" and she said OHH we'll book u a new date right away and ill check ur numbers. NOW clearly she didnt check and DIDNt get me a new appointment. PLUS tgh had no idea i had be hospitalized ! I called 4 people for frig stake! how MANY people do i have to call to get someone to WRITE SOMETHING DOWN. THIS IS MY LIFE where talking about here! My life is in the balance of me getting this transplant I take GREAT offense when I have to correct the paperwork and make my file up to date! I AM the patient and if I wasnt as good with understanding hospitals, as I am ,id be screwed! Now the hospitals are going to pin blame on eachother.. no one is held accountable for mistakes like theses. I know this cause just last month no one knew i was admitted which I THOUGHT i fixed and my coorindator said was fixed. CLEARLY shes wrong again. IM PISSED SO PISSED. I dont even no what to say. Im listed 20% higher than what I AM. and the worst thing..they cant understand why im sooo mad.
I CALLED HER before christmas and told her my "FEAR" that my pfts were not up to date and that if lungs came up they would overlook me because my file says "im stable and at 40%" and she said OHH we'll book u a new date right away and ill check ur numbers. NOW clearly she didnt check and DIDNt get me a new appointment. PLUS tgh had no idea i had be hospitalized ! I called 4 people for frig stake! how MANY people do i have to call to get someone to WRITE SOMETHING DOWN. THIS IS MY LIFE where talking about here! My life is in the balance of me getting this transplant I take GREAT offense when I have to correct the paperwork and make my file up to date! I AM the patient and if I wasnt as good with understanding hospitals, as I am ,id be screwed! Now the hospitals are going to pin blame on eachother.. no one is held accountable for mistakes like theses. I know this cause just last month no one knew i was admitted which I THOUGHT i fixed and my coorindator said was fixed. CLEARLY shes wrong again. IM PISSED SO PISSED. I dont even no what to say. Im listed 20% higher than what I AM. and the worst thing..they cant understand why im sooo mad.
Sunday, January 9, 2011
I wonder what 2011 holds
Don't you love when you find a song that somehow means more to you than just the words? Like its so perfect it was written just for you? I found a couple songs over the last couple days that have expressed that to me. I'll youtube the videos for everyone because they are really good songs. The first is Paperweight .
The video isnt important its from some movie appartently. I just think it sounds how I feel when I love someone. I think the lyrics are perect . Haha just the lyrics " mess up my bed with me , Im happy to lay here just happy to be here" ...the whole song. Perfect. Every word you say i think I should write down. lol perfect. Makes me smile. Ivve been feeling very creative lately and I feel like I should make a video to this at some point.
The second is by the same group but called "Hello"
It reminds me of a certain someone, reminds me of my life. "You know what they say, you cant have it, so you want it back, Im way past that " lol
The third is just a very cute song. Popular. I like it.
The last wont let me embed it grrr so heres the link
http://www.youtube.com/watch?v=0xXD9-1mLBY
I was on the job bank for our area, because I am looking "beyond transplant" even though it hasn't happened yet, anyways I found a medical rep. job but you need 102 wpm typing :S I was like HOLY! I need to start practice typing again. I'm probably at around 60? maybe. I want to contine my life after all this is over...make it a bad memory. This is the only thing keeping me sane lol. Plus I got an late christmas , early birthday gift today. A NEW blender!!!! who ever said women shouldnt get kitchen app. certainly doesnt know me because Im estastic. PLUS i got sheets and bubble bath and THONGS for the kitchen...plus a spinny thingy to hold all of them and a candle...OMG it was like christmas all over it was amazing. THANK u auntie norma :)
Im 23 in 11 days. Countdown is on. Am I doing anything for my birthday with my twin, no lol shes working..SOOOO i dont no about this year. Lungs? lol that'd be a great gift lol
The video isnt important its from some movie appartently. I just think it sounds how I feel when I love someone. I think the lyrics are perect . Haha just the lyrics " mess up my bed with me , Im happy to lay here just happy to be here" ...the whole song. Perfect. Every word you say i think I should write down. lol perfect. Makes me smile. Ivve been feeling very creative lately and I feel like I should make a video to this at some point.
The second is by the same group but called "Hello"
It reminds me of a certain someone, reminds me of my life. "You know what they say, you cant have it, so you want it back, Im way past that " lol
The third is just a very cute song. Popular. I like it.
The last wont let me embed it grrr so heres the link
http://www.youtube.com/watch?v=0xXD9-1mLBY
I was on the job bank for our area, because I am looking "beyond transplant" even though it hasn't happened yet, anyways I found a medical rep. job but you need 102 wpm typing :S I was like HOLY! I need to start practice typing again. I'm probably at around 60? maybe. I want to contine my life after all this is over...make it a bad memory. This is the only thing keeping me sane lol. Plus I got an late christmas , early birthday gift today. A NEW blender!!!! who ever said women shouldnt get kitchen app. certainly doesnt know me because Im estastic. PLUS i got sheets and bubble bath and THONGS for the kitchen...plus a spinny thingy to hold all of them and a candle...OMG it was like christmas all over it was amazing. THANK u auntie norma :)
Im 23 in 11 days. Countdown is on. Am I doing anything for my birthday with my twin, no lol shes working..SOOOO i dont no about this year. Lungs? lol that'd be a great gift lol
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