I have a cystic sista best friend. My boyfriend calls her my ghost best friend, because since we can't ever hang out in person, he has yet to meet one of my closest friends. Whenever I get a text, my mom always says is that (enter boyfriends name) or is that (enter cystic sisters) name. We text and talk on msn all the time.
Due to the fact that she also has CF we can't hang out in person, even though we both have cottages near each other and live near each other! major bummer.
We can't hang out in case I pass a bug/bacteria that is growing in my lungs, that I tolerate fine, and if I were to pass it to her, her lungs might be like "hey what the heck is this" and react way different then mine, and she might get more infections, more IV's...ya da ya da ya da or vice versa!
It's nice to have someone who your super close to, who is going through the same thing. We became extra close when she was hospitalized last fall. We talk about everything, and give eachother advice. Right now I'm pushing her to start exercising. (if your reading this girl, get on the bike! haha) It's funny because a few months ago, she was the one pushing me to start exercising. She is an inspiration. She was in the hospital for awhile, and on IV antibiotics for 12 weeks and on oxygen 24/7. She came back though, and is better then ever! She got off oxygen, and is doing awesome. She also went for a lung assessment this summer. It was good, because I went first and was able to tell her all about the week, the good the bad and the ugly of it.
I made us friendship necklaces for us to wear at our lung transplant assessment weeks. I thought I had lost mine, which is the reason for this post, because I found it up at my cottage this weekend, phew! I am wearing it as we speak.
It's so nice having someone who knows what it's like to be out of breath when your sick or get dressed to quick in the morning and you have to catch your breath...I tried explaining it to a friend (a non CF friend) and she just could not grasp it. She could not imagine what it was like, I told her to try breathing through a straw while she did everything and thats why it's like for me to do things. Or notice something that makes her out of breath, and multiply that by five and that's what it would be like for me to do something? I think? iI mean it's weird to think about getting out of breath reaching for a suit case, or getting dressed some mornings for people without CF.
It really really irks me, that we CFers not only have to deal with this horrible disease...but to top it off our support people who know us so well and can understand more then anyone else what we're going through, other CF people....and we cannot even hang out with each other due to cross infection. Thank goodness for the internet. It has opened up a whole range of opportunities. Who knew that one of my closest friends would be via the internet, or that I could chat with other CF people and get advice through facebook groups and other CF blogs...gesh it is such a wonder what the internet has allowed us to do. I am having my first dinner party for 6, tomorrow night in my band new apartment! I spent all tonight washing up my dishes and making a grocery list...I wish my cystic sista could come over for dinner too! Anyways that's my rant for tonight! boo to CF bugs and not being able to hang out with other CFers...yay to internet and allowing us to still talk to each other!
Sunday, August 30, 2009
Friday, August 28, 2009
Long Time
It's been forever since I've posted something, My aunt mentioned this, so I thought tonight I will sit down and write!
I've been really busy with my jewellery business, and trying to snag in the little bit of sunshine and warm weather we had for ONE week...this summer has been a major disappointment.
I am saving up all my money to go to barbados, tonight we actually were even going to put on a fire in the kitchen...can you believe it! It is august still, did someone forget to tell someone to turn on the sun for the summer...sigh.
Flights are expensive this year to Barbados though since one airline stopped flying there, so I don't think I will get there as often or for as long as I would have liked. I always feel so much better going down to Barbados though. The salt air does wonders for coughing up all the junk in my lungs which fester and grow bacteria, leading to lung infections...more IV's and more troubles. So I love getting down to Barbados, beathing deep and coughing up all the junk. Plus it's hot, and relaxing and I love the people...I was made for the heat!
I also wanted to go visit my cousin in the States, but flights to DC are $600, tres expensive...and unfortunately I am not the greatest driver and it's a 10 hour drive, so that's kind of out of the question...sigh money money money.
I had clinic last tuesday. My white blood cell count, which is the little guys that come out to fight an infection, so when it is above 11, you know you have an infection cause more White blood cells are out fighting something, well two weeks ago my white blood cell was 21.8!! the highest it's been in a long time, meaning I still have an infection roaming around somewhere in the depths of my lungs, even though I had no outward appearance of one, my cough was not worse or anything else, so we were hoping that it was just this medication prednisone...which of course all you other CFer's know is the most blissful and amazing yet horrible and awful drug all rolled into one teeny tiny tablet of a pill, which leaves a funny taste on your tongue if you don't get swallowed fast enough. This wonderful little drug gave me diabetes from being on it, and comes with all these other wonderfully delicious (tricks are for kids?) side effects. Anyways thankfully my whiteblood cell count on tuesday was down to 16...still not in the normal range, but she's coming down as I decrease prednisone, I'm now at 13mg...I was started on 50 mg February 24, 2009. I hear they give you triple digits of prednisone post transplant...good gosh that will send my blood sugar levels through the roof! at least it's only for a day or two after transplant that your on that high of a dose. My poor little body. I need to be in the best shape before transplant...'you walk into surgery for a double lung transplant...and you walk out of it'...as they say. Thus why I am working my buns off trying to exercise like crazy, so when the time does comes, my body muscles are all in their highest performance!
So on tuesday My FEV1% was 23%, up from 22% lung function...so it isn't really an increase. The doctors would not call it an increase, but hey i will take any little bit I can get! Back in June I was 19%, and only .71 litres or something...soo I'm making progress...slow but steady progress. So to me it is an increase.
I am now at 0.81 liters of air that I can breathe into my lungs. A normal person my age and height is suppose to have 3.53 liters and 100% FEV1 lung function.... Soo you can imagine why it's a little...well a lot harder for me to do the simplest of things like climb a flight of stairs or even vaccum my new apartment ( thankfully my wonderful mother vaccumes it for me! one day I'll be able to vaccuum the place without getting winded! (which by the way I just got a fridge for my apartment! and am having my first dinner party on monday night with some friends from university!)
I worked out for 50 minutes on the treadmill tonight. An incline of 1.5 and a 5 minute warm up at 2.8mph, requiring 6 liters of oxygen to keep my oxygen levels above 90 (regular people have oxygen levels of 99-100%) 15 minutes at 3.8mph hour at incline of 1.5 requiring after 10 minutes 8 liters of oxygen. 10 minutes at 3.5 mph, 10 minutes at 3.2 mph and 5 minutes at 3.0 mph and a 5 minute cool down all at incline of 1.5. This weeks total work out score so far, 3/5 days. Woo. I attribute me feeling so good, and having my numbers increase a little bit is due to working out. On September 2nd it will be my two month anniversary of working out 3-4 times a week! yay, go me. Nothing like having a transplant assessment thrown in your face, going through hell and back of a really scary week getting the assessment done, to motivate you to push yourself like crazy in the exercise department.
I've kind of exhausted all my other choices to try to increase what little lung function I have left, I've done the IV drugs, numerous times, I've been on prednisone, a steroid for inflammation in your lungs...there isn't a whole lot left the medical world can do for me, other then a transplant, which i'm 'too healthy' for right now, thus I take up my vows with exercising. It's the only thing left that I haven't exhausted yet to try to increase my lung function. So here I am at almost two months of working out, and I feel great! My goal is by Christmas to have increased my lung function to 0.91 liters.
Alright so sorry if that was a long and boring part of my post, but I was trying to write for the other CF people who read my blog who know all the medical terms and what not, and also write for my friends and family who don't know medical terms. My dear friend Katherine once said to me, when she was sitting in the kitchen listening to me and my mom hash about a day at clinic, " I love when you talk doctor to me" ahah Sometimes we don't realize that others don't know the lingo, it's kind of second nature to us know. We're basically...pretty much... doctors....haha
Also this week it is sad I saw a friend leave for new york to start her post graduate work as a genetic councilor. She got 1 of the 24 spots offered at her program in new york, which thousands applied for! Smart little cookie that she is! (I'll probably be her first patient, or my brothers with their wives in the future haha, we are the perfect family for her to get her hands on)
It was sad though, because we are all graduated...well mostly graduated, and moving on, people are getting careers, and moving to other parts of the world...an end of an era.
Anyways I have to get back to updating my website! 20 new necklaces are going up. I'm also joining etsy. Love that site. I will post again soon! I don't have to go back to clinic for three more weeks...we've been living there this summer it feels like, so 3 weeks will be a nice reprieve.
I've been really busy with my jewellery business, and trying to snag in the little bit of sunshine and warm weather we had for ONE week...this summer has been a major disappointment.
I am saving up all my money to go to barbados, tonight we actually were even going to put on a fire in the kitchen...can you believe it! It is august still, did someone forget to tell someone to turn on the sun for the summer...sigh.
Flights are expensive this year to Barbados though since one airline stopped flying there, so I don't think I will get there as often or for as long as I would have liked. I always feel so much better going down to Barbados though. The salt air does wonders for coughing up all the junk in my lungs which fester and grow bacteria, leading to lung infections...more IV's and more troubles. So I love getting down to Barbados, beathing deep and coughing up all the junk. Plus it's hot, and relaxing and I love the people...I was made for the heat!
I also wanted to go visit my cousin in the States, but flights to DC are $600, tres expensive...and unfortunately I am not the greatest driver and it's a 10 hour drive, so that's kind of out of the question...sigh money money money.
I had clinic last tuesday. My white blood cell count, which is the little guys that come out to fight an infection, so when it is above 11, you know you have an infection cause more White blood cells are out fighting something, well two weeks ago my white blood cell was 21.8!! the highest it's been in a long time, meaning I still have an infection roaming around somewhere in the depths of my lungs, even though I had no outward appearance of one, my cough was not worse or anything else, so we were hoping that it was just this medication prednisone...which of course all you other CFer's know is the most blissful and amazing yet horrible and awful drug all rolled into one teeny tiny tablet of a pill, which leaves a funny taste on your tongue if you don't get swallowed fast enough. This wonderful little drug gave me diabetes from being on it, and comes with all these other wonderfully delicious (tricks are for kids?) side effects. Anyways thankfully my whiteblood cell count on tuesday was down to 16...still not in the normal range, but she's coming down as I decrease prednisone, I'm now at 13mg...I was started on 50 mg February 24, 2009. I hear they give you triple digits of prednisone post transplant...good gosh that will send my blood sugar levels through the roof! at least it's only for a day or two after transplant that your on that high of a dose. My poor little body. I need to be in the best shape before transplant...'you walk into surgery for a double lung transplant...and you walk out of it'...as they say. Thus why I am working my buns off trying to exercise like crazy, so when the time does comes, my body muscles are all in their highest performance!
So on tuesday My FEV1% was 23%, up from 22% lung function...so it isn't really an increase. The doctors would not call it an increase, but hey i will take any little bit I can get! Back in June I was 19%, and only .71 litres or something...soo I'm making progress...slow but steady progress. So to me it is an increase.
I am now at 0.81 liters of air that I can breathe into my lungs. A normal person my age and height is suppose to have 3.53 liters and 100% FEV1 lung function.... Soo you can imagine why it's a little...well a lot harder for me to do the simplest of things like climb a flight of stairs or even vaccum my new apartment ( thankfully my wonderful mother vaccumes it for me! one day I'll be able to vaccuum the place without getting winded! (which by the way I just got a fridge for my apartment! and am having my first dinner party on monday night with some friends from university!)
I worked out for 50 minutes on the treadmill tonight. An incline of 1.5 and a 5 minute warm up at 2.8mph, requiring 6 liters of oxygen to keep my oxygen levels above 90 (regular people have oxygen levels of 99-100%) 15 minutes at 3.8mph hour at incline of 1.5 requiring after 10 minutes 8 liters of oxygen. 10 minutes at 3.5 mph, 10 minutes at 3.2 mph and 5 minutes at 3.0 mph and a 5 minute cool down all at incline of 1.5. This weeks total work out score so far, 3/5 days. Woo. I attribute me feeling so good, and having my numbers increase a little bit is due to working out. On September 2nd it will be my two month anniversary of working out 3-4 times a week! yay, go me. Nothing like having a transplant assessment thrown in your face, going through hell and back of a really scary week getting the assessment done, to motivate you to push yourself like crazy in the exercise department.
I've kind of exhausted all my other choices to try to increase what little lung function I have left, I've done the IV drugs, numerous times, I've been on prednisone, a steroid for inflammation in your lungs...there isn't a whole lot left the medical world can do for me, other then a transplant, which i'm 'too healthy' for right now, thus I take up my vows with exercising. It's the only thing left that I haven't exhausted yet to try to increase my lung function. So here I am at almost two months of working out, and I feel great! My goal is by Christmas to have increased my lung function to 0.91 liters.
Alright so sorry if that was a long and boring part of my post, but I was trying to write for the other CF people who read my blog who know all the medical terms and what not, and also write for my friends and family who don't know medical terms. My dear friend Katherine once said to me, when she was sitting in the kitchen listening to me and my mom hash about a day at clinic, " I love when you talk doctor to me" ahah Sometimes we don't realize that others don't know the lingo, it's kind of second nature to us know. We're basically...pretty much... doctors....haha
Also this week it is sad I saw a friend leave for new york to start her post graduate work as a genetic councilor. She got 1 of the 24 spots offered at her program in new york, which thousands applied for! Smart little cookie that she is! (I'll probably be her first patient, or my brothers with their wives in the future haha, we are the perfect family for her to get her hands on)
It was sad though, because we are all graduated...well mostly graduated, and moving on, people are getting careers, and moving to other parts of the world...an end of an era.
Anyways I have to get back to updating my website! 20 new necklaces are going up. I'm also joining etsy. Love that site. I will post again soon! I don't have to go back to clinic for three more weeks...we've been living there this summer it feels like, so 3 weeks will be a nice reprieve.
Monday, August 17, 2009
Vacation
I am currently sitting in a lodge up north with the wind whistling through the windows as it gently blows my hair around my face so I can't see the computer screen sometimes. The lodge has an amazing view of the lake and the dock is right outside the place. My mom already went for a dip in the lake early this morning.
We had some good news last week, the transplant team called us on Friday and they and my CF doctors all think it is a little too early to put me on the list. yay! Now I just have have to stay infection free so I can go traveling. My boyfriend is already planning a trip out to Halifax, I will have to add that to the list of places to go this fall.
We are on a vacation visiting my little brother...although he's not so little, he towers over me at almost six foot three. My grandma, and aunt and mom all drove up yesterday, a five hour car ride from our home. It is so nice to see little brother though. I am so jealous it is like he is at camp. He lives in a cabin with 8 other guys in the woods at a park. I miss camp so much from the younger years! If I could go back in time to one point in my life, it would be the summer I was 15 years old, I went to camp for a month doing a councillor in training program. It was the best summer of my life and it was before CF started to catch up with me.
I haven't blogged in awhile, but I've been busy with my jewellery business, and enjoying the hot weather we're finally having. I've even managed to sneak a few margaritas in this past weekend with my girlfriend at the cottage. We lazed on the beach for hours and sat in the water, it was 30 degrees, I can't remember doing that at all last summer. It was wonderful to have the heat this year finally to do it. Anyways I'd better get out and enjoy the sun up here before it begins to thunder storm! Thanks for all your positive energies about 'failing' the transplant test! It worked... for now!
We had some good news last week, the transplant team called us on Friday and they and my CF doctors all think it is a little too early to put me on the list. yay! Now I just have have to stay infection free so I can go traveling. My boyfriend is already planning a trip out to Halifax, I will have to add that to the list of places to go this fall.
We are on a vacation visiting my little brother...although he's not so little, he towers over me at almost six foot three. My grandma, and aunt and mom all drove up yesterday, a five hour car ride from our home. It is so nice to see little brother though. I am so jealous it is like he is at camp. He lives in a cabin with 8 other guys in the woods at a park. I miss camp so much from the younger years! If I could go back in time to one point in my life, it would be the summer I was 15 years old, I went to camp for a month doing a councillor in training program. It was the best summer of my life and it was before CF started to catch up with me.
I haven't blogged in awhile, but I've been busy with my jewellery business, and enjoying the hot weather we're finally having. I've even managed to sneak a few margaritas in this past weekend with my girlfriend at the cottage. We lazed on the beach for hours and sat in the water, it was 30 degrees, I can't remember doing that at all last summer. It was wonderful to have the heat this year finally to do it. Anyways I'd better get out and enjoy the sun up here before it begins to thunder storm! Thanks for all your positive energies about 'failing' the transplant test! It worked... for now!
Saturday, August 8, 2009
best news ever.
my friend Bree has been waiting for a double lung transplant for a year and a half...after one false alarm in September, today she got the call and was in surgery this afternoon!
yay! sending out positive thoughts to her!
it is so exciting! she can finally start living her life again and enjoying things, the other day she finally let her mom help her do little things like make her bed, which would have taken her an hour and made her feel like she had just run a 40 k marathon, but her mom only three minutes to make it, it was a sign that her new lungs were coming soon and today she got them! GO BREE. sending out all my postive thoughts and energy in the whole wide world to you girl!
yay! sending out positive thoughts to her!
it is so exciting! she can finally start living her life again and enjoying things, the other day she finally let her mom help her do little things like make her bed, which would have taken her an hour and made her feel like she had just run a 40 k marathon, but her mom only three minutes to make it, it was a sign that her new lungs were coming soon and today she got them! GO BREE. sending out all my postive thoughts and energy in the whole wide world to you girl!
Thursday, August 6, 2009
Bring it.
well 45 minutes on the treadmill...maybe not such a good idea at eleven at night...endorphins are flyin' through my body!
some people are still a bit confused as to what is going on.
I'm not on the transplant list. I'm not waiting for a brand new spanking set of lungs from a generous gift from someone else. I'm just getting assessed so that when the day comes everything will be ready, since over the last few years, and espeically this year, my health has slowly declined significantly.
I will be hearing from the doctors in three weeks as to whether they think I need to be on the list now or whether I can keep with the lungs I got, until I really need some new ones.
Wouldn't it be nice if there was a department store where we all could go pick out a new pair of lungs to go with my new purple maxi dress and gold vintage gladiator sandals? I would want my new lungs the colour of the Barbados sea please.
Someone asked me the other week, whether there would be any reason why I wouldn't go through with the transplant...
To a lot of people it's just like well "why wouldn't you get it"...I have read from a few other sites about other CF people not wanting to get lung transplants...I'm not sure of their reasoning, but I can think of a few reasons why someone would not want to put themselves through it...
First of all it's not a cure...it's a treatment. and if it doesn't work, then you've just spent the last year of your life (roughly if your waiting that long) going down to clinic three times a week for rehab (building your muscles up for the operation), not being able to leave the area of 2 1/2 hours and going to multiple doctor appts, more tests, more anxiety...
Then after the operation, come all the rejections and infections that come post tx...your trading in one set of problems for a whole new set and it's not even a for sure thing...so yes I understand why some people would not want to give up the time they have left, to be going to dr's appts and for more problems after tx for not even a sure thing...but for me...that was never an option.
I never thought about not getting a lung transplant. There are a ton of reasons why some people would just not want to go through all that...but for me, I thrive off hard work, I like a challenge...and I love life...so if it comes right down to it. Bring it on modern medicine. I'm ready.
some people are still a bit confused as to what is going on.
I'm not on the transplant list. I'm not waiting for a brand new spanking set of lungs from a generous gift from someone else. I'm just getting assessed so that when the day comes everything will be ready, since over the last few years, and espeically this year, my health has slowly declined significantly.
I will be hearing from the doctors in three weeks as to whether they think I need to be on the list now or whether I can keep with the lungs I got, until I really need some new ones.
Wouldn't it be nice if there was a department store where we all could go pick out a new pair of lungs to go with my new purple maxi dress and gold vintage gladiator sandals? I would want my new lungs the colour of the Barbados sea please.
Someone asked me the other week, whether there would be any reason why I wouldn't go through with the transplant...
To a lot of people it's just like well "why wouldn't you get it"...I have read from a few other sites about other CF people not wanting to get lung transplants...I'm not sure of their reasoning, but I can think of a few reasons why someone would not want to put themselves through it...
First of all it's not a cure...it's a treatment. and if it doesn't work, then you've just spent the last year of your life (roughly if your waiting that long) going down to clinic three times a week for rehab (building your muscles up for the operation), not being able to leave the area of 2 1/2 hours and going to multiple doctor appts, more tests, more anxiety...
Then after the operation, come all the rejections and infections that come post tx...your trading in one set of problems for a whole new set and it's not even a for sure thing...so yes I understand why some people would not want to give up the time they have left, to be going to dr's appts and for more problems after tx for not even a sure thing...but for me...that was never an option.
I never thought about not getting a lung transplant. There are a ton of reasons why some people would just not want to go through all that...but for me, I thrive off hard work, I like a challenge...and I love life...so if it comes right down to it. Bring it on modern medicine. I'm ready.
Wednesday, August 5, 2009
Muga Muga Muga.... Suga?
Yesterday I did a muga test. It was brutal. It was basically them checking to make sure my heart can withstand the surgery, because during the surgery, the surgeon actually lifts and moves my heart around so he can sew in the new lungs. This puts a lot of stress on the heart, so they had to make sure there was no holes in it, and that the blood flowed well, in and out during rest and exercise.
Well let me tell you ladies and gentlemen...if you ever find yourself in the position of getting a muga test (i'm hope none of you will!) but here is lesson number one...don't exercise for 45 minutes on the treadmill the night before you are suppose to get the muga...not only were my legs a little sore already, but I clearly did not realize I have the weakest thigh muscles since it was really hard to lie on a wooden board on my back, put my feet in this 25 year old bike peddles, and peddle against a really hard resistant for as long as I could, with this huge robotic looking camera all up in my face...I maybe went for 60 seconds, before I asked him if I could quit...it was brutal. I will have to work on my bicycling ability as well as my breathing ability on the bike..both which prevented me from going longer, but as my cystic cysta told me "don't worry those exercise tests are suppose to be extremly hard"...thanks Bish (names have been changed to protect the innocent) haha
note to self...get an exercise bike, since it works different muscles, i'll have to switch up my routine between the bike and the treadmill.
I started reading the ninth book of the sookie stackhouse series. True blood fans, start reading these novels. Twighlight fans start reading them.
I'm just waiting for dinner to digest and then going to hope on the treadmill. Going to watch another episode of freaks and geeks.
Looking forward to lykke li concert and day/night out in the city for the first time in like 10 weeks since I am no longer on IV's and confined to my home for three times of meds daily hooked up to a pole. It will be wooonderful. For your musical enjoyment check out Lykke Li as she is grand. http://www.myspace.com/lykkeli - it's a tie between my fav song, 'little bit' and 'tonight'.
Oh also, there is a blood clinic tuesday august 11th in our area! please if you are able to donate, it would mean a lot to me. I found out my blood type during all these tests, and I know it's selfish, but one day I might need a blood transfusion, it's such a simple thing and you could be helping so many people! sooo please donate! I'll even come and hold your hand if you need it...i've never been on that end of the holding hand, someone is always usually holding mine! but i'm sure i'll be good at it! haha I'll even bring you a juice box (to replenish your sugars)!
Well let me tell you ladies and gentlemen...if you ever find yourself in the position of getting a muga test (i'm hope none of you will!) but here is lesson number one...don't exercise for 45 minutes on the treadmill the night before you are suppose to get the muga...not only were my legs a little sore already, but I clearly did not realize I have the weakest thigh muscles since it was really hard to lie on a wooden board on my back, put my feet in this 25 year old bike peddles, and peddle against a really hard resistant for as long as I could, with this huge robotic looking camera all up in my face...I maybe went for 60 seconds, before I asked him if I could quit...it was brutal. I will have to work on my bicycling ability as well as my breathing ability on the bike..both which prevented me from going longer, but as my cystic cysta told me "don't worry those exercise tests are suppose to be extremly hard"...thanks Bish (names have been changed to protect the innocent) haha
note to self...get an exercise bike, since it works different muscles, i'll have to switch up my routine between the bike and the treadmill.
I started reading the ninth book of the sookie stackhouse series. True blood fans, start reading these novels. Twighlight fans start reading them.
I'm just waiting for dinner to digest and then going to hope on the treadmill. Going to watch another episode of freaks and geeks.
Looking forward to lykke li concert and day/night out in the city for the first time in like 10 weeks since I am no longer on IV's and confined to my home for three times of meds daily hooked up to a pole. It will be wooonderful. For your musical enjoyment check out Lykke Li as she is grand. http://www.myspace.com/lykkeli - it's a tie between my fav song, 'little bit' and 'tonight'.
Oh also, there is a blood clinic tuesday august 11th in our area! please if you are able to donate, it would mean a lot to me. I found out my blood type during all these tests, and I know it's selfish, but one day I might need a blood transfusion, it's such a simple thing and you could be helping so many people! sooo please donate! I'll even come and hold your hand if you need it...i've never been on that end of the holding hand, someone is always usually holding mine! but i'm sure i'll be good at it! haha I'll even bring you a juice box (to replenish your sugars)!
Monday, August 3, 2009
Swimming
Well I've been short of breath a bit this past weekend. My blood sugars have also been out of whack, ah the wonders of having cystic fibrosis related diabetes...always keeps you on your toes. I'm not sure what the cause is. I hope I'm not getting another infection i JUST came off of meds.
anyways to update this weekend was lovely, ate a lot of good food, ( my boyfriends mother always has schmogorusborg of food, i contribute a lot of this new found weight to her great cooking) there was good company, and good weather on the island.
I even found another thing to put down on my list of things I want to accomplish when I get a transplant...I want to swim from my boyfriends island to the park island across the way. It's about 3-5 kilometres, maybe? When I was a competitive swimmer before my CF decided to bite me in the butt, and take a turn for the worse, we used to swim 5 km to raise money for the swim team...I want to swim 5 km in the lake. obviously i'll have to train, i haven't swam like that in YEARS...but gosh it'll be great.
mainly i just want to swim again though...any swimming. i miss it so much. i miss feeling the water slide past you, I miss blowing out bubbles of air underwater, I miss feeling so strong as you take stroke after stroke...I miss being able to dive into the water and come up not feeling like you just ran a marathon and can hardly breathe...wouldn't it be nice to do a good dive into the lake again? or even a backwards dive, and then swim like you did when you were a little kid under the water like a mermaid...then whip your hair back as you dive out of the water just like Ariel did? haha sigh...
Anyways wow totally didn't mean to go all nostalgic on you...but really I miss swimming perhaps above all else. Not being able to play inner tube water polo at school this year was a major let down.
I think I am going to take a leave of absence in the fall from school...if after all the doctors meet and they decide to list me I wont' be able to travel anywhere outside of the city for 2 and half hours...so trips and vacations are out.
If I'm waiting on the list for a year...then that means for two years, one year waiting lets say and one year post transplant of recovery.... no vacations...thus I gotta get my kicks in while I still can. If they decide not to list me, I'm going to go travelling this fall, because who knows when they might decide to list me, and 2 years is a long time to not go to my favourite destination joint...Barbados!
So places I want to go this fall, Montreal, New York, Washington, London ON, (All to visit people), Barbados of course...it is my second home, if they had a CF clinic there, I'd be living there in a heart beat, also somehow I feel magically better down there. I think... no scratch that, I KNOW I was born in the wrong continent. I was made for the heat, and the salt air.
I also want to work on my business, and do things I love...I don't love school... and I don't want to waste time commuting. I'm going to concentrate on travelling, my jewellery business, and exercising...I gotta get my muscles strong, since that seems to be the key for going through a transplant.
Also started watching the freaks and geeks season this weekend...jury is still out on whether I like it.
Send out positive thoughts and vibes to the universe for me. Tomorrow is another day!
anyways to update this weekend was lovely, ate a lot of good food, ( my boyfriends mother always has schmogorusborg of food, i contribute a lot of this new found weight to her great cooking) there was good company, and good weather on the island.
I even found another thing to put down on my list of things I want to accomplish when I get a transplant...I want to swim from my boyfriends island to the park island across the way. It's about 3-5 kilometres, maybe? When I was a competitive swimmer before my CF decided to bite me in the butt, and take a turn for the worse, we used to swim 5 km to raise money for the swim team...I want to swim 5 km in the lake. obviously i'll have to train, i haven't swam like that in YEARS...but gosh it'll be great.
mainly i just want to swim again though...any swimming. i miss it so much. i miss feeling the water slide past you, I miss blowing out bubbles of air underwater, I miss feeling so strong as you take stroke after stroke...I miss being able to dive into the water and come up not feeling like you just ran a marathon and can hardly breathe...wouldn't it be nice to do a good dive into the lake again? or even a backwards dive, and then swim like you did when you were a little kid under the water like a mermaid...then whip your hair back as you dive out of the water just like Ariel did? haha sigh...
Anyways wow totally didn't mean to go all nostalgic on you...but really I miss swimming perhaps above all else. Not being able to play inner tube water polo at school this year was a major let down.
I think I am going to take a leave of absence in the fall from school...if after all the doctors meet and they decide to list me I wont' be able to travel anywhere outside of the city for 2 and half hours...so trips and vacations are out.
If I'm waiting on the list for a year...then that means for two years, one year waiting lets say and one year post transplant of recovery.... no vacations...thus I gotta get my kicks in while I still can. If they decide not to list me, I'm going to go travelling this fall, because who knows when they might decide to list me, and 2 years is a long time to not go to my favourite destination joint...Barbados!
So places I want to go this fall, Montreal, New York, Washington, London ON, (All to visit people), Barbados of course...it is my second home, if they had a CF clinic there, I'd be living there in a heart beat, also somehow I feel magically better down there. I think... no scratch that, I KNOW I was born in the wrong continent. I was made for the heat, and the salt air.
I also want to work on my business, and do things I love...I don't love school... and I don't want to waste time commuting. I'm going to concentrate on travelling, my jewellery business, and exercising...I gotta get my muscles strong, since that seems to be the key for going through a transplant.
Also started watching the freaks and geeks season this weekend...jury is still out on whether I like it.
Send out positive thoughts and vibes to the universe for me. Tomorrow is another day!
Saturday, August 1, 2009
Pathetic Fallacy
today is a beautiful day.
it must be pathetic fallacy, the weather is reflecting my mood! (all of us drama majors learned pathetic fallacy in highschool...hope i'm using it right? haha)
it's been a crummy summer weather wise, in which I've been on IV for the past 10 weeks, now the first weekend of the summer it's actually beautiful and hot, and I'm off IV and my lung transplant assessment week is overrrrrr and now the sun is shining! boy oh boy if that isn't a sign I don't know what is! Good Karma is coming our way!
it must be pathetic fallacy, the weather is reflecting my mood! (all of us drama majors learned pathetic fallacy in highschool...hope i'm using it right? haha)
it's been a crummy summer weather wise, in which I've been on IV for the past 10 weeks, now the first weekend of the summer it's actually beautiful and hot, and I'm off IV and my lung transplant assessment week is overrrrrr and now the sun is shining! boy oh boy if that isn't a sign I don't know what is! Good Karma is coming our way!
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