so....I'm coming to the realization that I'm still bitten by the travelling bug. I thought that I would not want to go to New Zealand since I've had such bitter resentments towards there for the last month and bit....but funnily enough... I still really want to go. It had been a goal of mine, and I still kind of want to see it through. I started working out 6 months ago, faithfully, 3-4 times a week, every week, not only for the benefit of my lungs and to stay off of the transplant list, but also so I would be able to visit my former boyfriend in NZ while he went over there for teachers college. Every day when I got on the treadmill it spurned me on, drove me. It was a good goal to have...and I still want that goal. I still want to go to that side of the world and see it. I want to go to Australia and NZ. One of my dearest friends is out in Australia for teachers college. She is home this Christmas break and it is so good to see her again after almost a year! We've been best buds since we were 5 years old. Another good gf is in Australia working, and my cousin is starting teachers college in feb. in Australia, plus one of my favourite resident doctors moved back to NZ, and I would love to go see her. With all these people over there, I still really want to go. It sounds like a pipe dream doesn't it? But it's a dream, and a goal and I want to achieve it.
Here I was thinking I would get away with not spending all that money to go half way across the world since the reason I was going , he's no longer part of my life...but now I realize...I just want to go anyways for me. SO here is my dream for 2010...how I'm going to make it a reality...
keep working out...my oxygen was really good yesterday while working out, and in two days, I am going to increase my running program up to 2 minutes times 4 with fast hiking inbetween. I have not been able to increase my running as quickly as Ronnie from RSR blog, but I've managed to get up to 2 minutes of running, which for someone sittin' at 23% lung function, and could not run for 10 seconds when I first started, I am not doin' to shabby at almost 2 minutes of running, hah, . exciting, but scary.
I am going to really start dreaming and doing big with my business, so I can make enough money to finance my trip to the other side of the world comfortably....
Maybe tomorrow I will feel differently, but today and this week...my dream and goal is to make it to the other side of the world before these ol' lungs go caput!
For 2010...I'm going to think big...and dream bigger.
One of the best advice one of my nurses ever gave me was...CF is just one little part of Hattie...all of this is who Hattie is...yes sometimes CF can seem like it is the only thing in our lives but really, it is just one little part of us, we're so much more, so lets dream like we are....
Wednesday, December 30, 2009
Tuesday, December 22, 2009
Birthday
Tomorrow is my birthday. 22 years old.
I decorated my apartment with all my grandmothers old Christmas decorations. I cut down a little charlie brown type tree at my uncles farm for my apartment. My apartment looks so cute. I'm really pleased.
Christmas is so soon. It's funny how someone so important and such a huge part of me for the last five years is no longer part of my life...and how other people have just stepped in to fill the hole he left behind. Life goes on. I could not even stop it. New things have started happening to me. Life just continues on, it's truly amazing. I am blessed with so many great people in my life and all the new ones that I keep meeting and creating new friendships with. It's weird to think of what my life was like five weeks ago to what it's like now.
I recieved my first birthday present, and it sat under my christmas tree for a few days, but finally I opened it yesterday. It was the best present ever from my Cystic systa. Two margarita hand painted glasses, with recipes on the bottom of them, one is called Cadillac, with pretty pink cars all over it, and the other is called princess with beautiful princess theme all over it. They are actual margarita glasses, I am tickled pink, and cannot wait to have a margarita in them! Thanks soo much girl!
I worked out today, and my oxygen was great. It was fairly easy to work out today too. Last week I worked out four times...I know I didn't get my fifth work out in...buh. It seems the weekend I never am able to get the work out in. I really have to try to change that.
45 more minutes and I'll be 22...that seems so young, yet old.
I am excited to see this year be over. 2010, brings new and exciting things, I feel it.
Happy birthday to my older brother as well, he turns 24 tomorrow. My parents were blessed with two Christmas babies, two years apart. My older brother was not impressed the year I was born and mom was in the hospital for his b-day.
I'm off to bed, up early, as customers are still coming over to purchase jewellery, last minute shoppers! I also have tons of food to prepare for my birthday party tomorrow. 15 girls? chaos. muchos fun. Merry Christmas everyone! 36 more days till barbados!
I decorated my apartment with all my grandmothers old Christmas decorations. I cut down a little charlie brown type tree at my uncles farm for my apartment. My apartment looks so cute. I'm really pleased.
Christmas is so soon. It's funny how someone so important and such a huge part of me for the last five years is no longer part of my life...and how other people have just stepped in to fill the hole he left behind. Life goes on. I could not even stop it. New things have started happening to me. Life just continues on, it's truly amazing. I am blessed with so many great people in my life and all the new ones that I keep meeting and creating new friendships with. It's weird to think of what my life was like five weeks ago to what it's like now.
I recieved my first birthday present, and it sat under my christmas tree for a few days, but finally I opened it yesterday. It was the best present ever from my Cystic systa. Two margarita hand painted glasses, with recipes on the bottom of them, one is called Cadillac, with pretty pink cars all over it, and the other is called princess with beautiful princess theme all over it. They are actual margarita glasses, I am tickled pink, and cannot wait to have a margarita in them! Thanks soo much girl!
I worked out today, and my oxygen was great. It was fairly easy to work out today too. Last week I worked out four times...I know I didn't get my fifth work out in...buh. It seems the weekend I never am able to get the work out in. I really have to try to change that.
45 more minutes and I'll be 22...that seems so young, yet old.
I am excited to see this year be over. 2010, brings new and exciting things, I feel it.
Happy birthday to my older brother as well, he turns 24 tomorrow. My parents were blessed with two Christmas babies, two years apart. My older brother was not impressed the year I was born and mom was in the hospital for his b-day.
I'm off to bed, up early, as customers are still coming over to purchase jewellery, last minute shoppers! I also have tons of food to prepare for my birthday party tomorrow. 15 girls? chaos. muchos fun. Merry Christmas everyone! 36 more days till barbados!
Wednesday, December 16, 2009
work out three times this week thus far! woo
alright...it's time for me to go back to barbados....today my oxygen levels at rest are bouncing around between 87-92...what the heck! I don't even get it.
I took respiractin (this natural anti inflammation stuff I've been trying, and after I took it, my oxygen went up to 93 and stayed there resting) but now it is back to being wonky...I think I am obessing over my oximeter wayy to much. Plus I'm exhausted, maybe that has to do with the oxygen levels? I was out with a friend till 1 last night and up at 8 today...me and these late nights...I am going to have to curb it in! haha
Last night though while reading before bed, I was 94 resting oxygen with a heart rate in the 80's woo. normally in the 100's from all the ventolin and puffers, so to be in the 80's means no infection, normally my heart rate is racing...and not just around jake gyllenhal who is tres hot, and was in the movie we saw last night, if you have not seen brothers, definitely take a gander at it. it's a really good movie. I was surprised. The movie selection has been quite disappointing lately though at the theatres. Although I will admit I do want to see the new princess movie out haha. I'll wait till next Cheap Tuesday night though. I'm a sucker for Disney, what can I say.
I've been able to keep up my running program 1 minute 45 seconds times 4 with walking at 3.4mph for three minutes in between each run. My oxygen when running has improved as well. I'm so proud of myself that I have been able to start running..even if it is with oxygen and for only 1 minute 45 seconds...believe me this is a HUGE deal with someone who has these poop lungs in them!...in the new year I'm going to increase it up to 2 minutes...wow so scary. I never even was able to do that when my lung function was up in the 50's! power to working out! what a difference.
I am so busy this weekend as well. It's a good thing I'm taking vitamin C every day, twice a day, like its candy so that so far I have been fortunate enough not to get sick with a cold! Thanks to everyone for staying away from me when you have the sniffles!
Counting down the days till I'm in bdo's again.....49 days. yay! Please hold on lungs, 49 more days and then you can crash and burn....not literally I just mean, then we can go in for a tune up, if we need to. It's almost that time where I need a tune up on IV's. Even though I just got my picc line out, it's been since July since I had any IV's. I just hope these little girls can last 49 days till I'm in that salty air and heat again!
So far this week I've worked out every day since Monday. I was talking to a fellow who had 16% lung function two years ago and had a pager and was on the transplant list for new lungs, today he has 40%. He wanted to spend his life with his wife...he wanted to be around for her. So he got motivated and started working out, and low and behold, he got off the transplant list, and now works out 2-3 hours every day. The power of Love eh? Inspiration for the CF community, yes. EXERCISE like your life depends on it...cause quite frankly... your life does.
My goal this week. Work out Monday-Friday. Friday night I'm going out dancing, so perhaps that will count as a double work out day? Saturday night there also might be dancing involved...so I'd like to put that down as a work out as well! haha anyways I have to get going for some dinner...or ice cream...whichever one is more readily available ha!
I took respiractin (this natural anti inflammation stuff I've been trying, and after I took it, my oxygen went up to 93 and stayed there resting) but now it is back to being wonky...I think I am obessing over my oximeter wayy to much. Plus I'm exhausted, maybe that has to do with the oxygen levels? I was out with a friend till 1 last night and up at 8 today...me and these late nights...I am going to have to curb it in! haha
Last night though while reading before bed, I was 94 resting oxygen with a heart rate in the 80's woo. normally in the 100's from all the ventolin and puffers, so to be in the 80's means no infection, normally my heart rate is racing...and not just around jake gyllenhal who is tres hot, and was in the movie we saw last night, if you have not seen brothers, definitely take a gander at it. it's a really good movie. I was surprised. The movie selection has been quite disappointing lately though at the theatres. Although I will admit I do want to see the new princess movie out haha. I'll wait till next Cheap Tuesday night though. I'm a sucker for Disney, what can I say.
I've been able to keep up my running program 1 minute 45 seconds times 4 with walking at 3.4mph for three minutes in between each run. My oxygen when running has improved as well. I'm so proud of myself that I have been able to start running..even if it is with oxygen and for only 1 minute 45 seconds...believe me this is a HUGE deal with someone who has these poop lungs in them!...in the new year I'm going to increase it up to 2 minutes...wow so scary. I never even was able to do that when my lung function was up in the 50's! power to working out! what a difference.
I am so busy this weekend as well. It's a good thing I'm taking vitamin C every day, twice a day, like its candy so that so far I have been fortunate enough not to get sick with a cold! Thanks to everyone for staying away from me when you have the sniffles!
Counting down the days till I'm in bdo's again.....49 days. yay! Please hold on lungs, 49 more days and then you can crash and burn....not literally I just mean, then we can go in for a tune up, if we need to. It's almost that time where I need a tune up on IV's. Even though I just got my picc line out, it's been since July since I had any IV's. I just hope these little girls can last 49 days till I'm in that salty air and heat again!
So far this week I've worked out every day since Monday. I was talking to a fellow who had 16% lung function two years ago and had a pager and was on the transplant list for new lungs, today he has 40%. He wanted to spend his life with his wife...he wanted to be around for her. So he got motivated and started working out, and low and behold, he got off the transplant list, and now works out 2-3 hours every day. The power of Love eh? Inspiration for the CF community, yes. EXERCISE like your life depends on it...cause quite frankly... your life does.
My goal this week. Work out Monday-Friday. Friday night I'm going out dancing, so perhaps that will count as a double work out day? Saturday night there also might be dancing involved...so I'd like to put that down as a work out as well! haha anyways I have to get going for some dinner...or ice cream...whichever one is more readily available ha!
Monday, December 14, 2009
"I'm alone on a bicycle for two"
boy...how long will this roller coaster of emotions continue?
It's exhausting. Today was one of the bad days....but in the words of Scarlett O'Hara "I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow."
It's exhausting. Today was one of the bad days....but in the words of Scarlett O'Hara "I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow."
Sunday, December 13, 2009
go go go go go...so busy
this is the first time i've had time to actually sit down and write a good long blog.
I like writing this blog, because it's something that I can go back and look on, and re read about what i was feeling, and going through at that point in my life.
Last Tuesday I had clinic...majorly dissapointing...my lung function was down for the first time in 5 months. I had been rock solid at .81 and even increased it to .83 a month ago...now i am down to .77...my white blood cell count was up at 17! the normal is 11, three weeks before they were at 20...so they were down a bit...so infection still though. bah! I just finished a course of cipro and septra antibiotics, but they didn't seem to do the trick. Cipro never really works. Anyways so my doc Dr. S. (amazing woman) put me on levoquin and upt my pred! ( I know i know i've been working for months to decrease it) but it seems to be ashtmatic symptoms so I gotta up the pred...anyways so I only upt it 1 mg so far no more of a puffy face then usual, which by the way totally goes down on the days that I work out. I guess the water retention like drains down or something after running and walking for 1 and half miles? 1 mg though seem to be all I need, normally she would have put her patient up to 20 mg but my body is just SO sensitive to prednisone that 1 mg seems to be doing the trick. Levoquin is also helping I think, I was able to back off even more on my insulin, and my SOB (shortness of breath) is decreasing, also my resting oxygen has come back up to 94, phew. it was bouncin' around all over the place, but since Thursday she seems to be stable.
One dissapointing thing this week, I have not worked out since wednesday. I know I feel gross! I have been SOOOO busy though. It's no excuse and I should have organized my time better, but stilll, Thursday I went to Rae Spoon Concert, soo fun. Friday had some girls over, Saturday Christmas house party in the city, and Sunday, afternoon christmas party and Sunday evening welcome home party...I AM POOPED. I have never had so many naps. I have not napped in months...in the last four days I think I have napped every day. Staying up till three in the morning and up at 9am is not my fortay for four nights in a row!
I also spent all three days updating and editing 150 photos for my website. Christmas is 12 days away! Busy time for jewels. I'm hoping I'll get a D40 or D3000 camera on sale in the holiday sales. Also I have done no Christmas shopping...I bought my dad a present before I left for barbados, but I have lost it...I hid it somewhere in my apartment and cannot find it for the life of me!
I cannot wait to just make some jewellery tomorrow, work out, and relax...no plans tomorrow night...hopefully it will stay that way, although the way things have been going, I'll probably end up doing something! haha
I have another busy weekend this weekend though, so I'd like to be low key throughout this week. Thursday through Saturday I am jam packed with things as well. It's good though...I'd be going nuts just sitting at home...thinking...keeping busy allows me only little glimpses of time to think about things...thinking about the things that have happened in the past month sometimes keeps me from sleeping...so I try not to?...
Next Wednesday is my birthday. 22 years old. Good gosh. what an old fart.
Alright so operation work out like mad this week, no skipping three days like last week! Increase lung function back up to .83 then .85 by January 5th appointment day.
Anyways I guess that is it for now! Hope everyone has their Christmas decorations up (I don't...but that's this week's goal too!)
I like writing this blog, because it's something that I can go back and look on, and re read about what i was feeling, and going through at that point in my life.
Last Tuesday I had clinic...majorly dissapointing...my lung function was down for the first time in 5 months. I had been rock solid at .81 and even increased it to .83 a month ago...now i am down to .77...my white blood cell count was up at 17! the normal is 11, three weeks before they were at 20...so they were down a bit...so infection still though. bah! I just finished a course of cipro and septra antibiotics, but they didn't seem to do the trick. Cipro never really works. Anyways so my doc Dr. S. (amazing woman) put me on levoquin and upt my pred! ( I know i know i've been working for months to decrease it) but it seems to be ashtmatic symptoms so I gotta up the pred...anyways so I only upt it 1 mg so far no more of a puffy face then usual, which by the way totally goes down on the days that I work out. I guess the water retention like drains down or something after running and walking for 1 and half miles? 1 mg though seem to be all I need, normally she would have put her patient up to 20 mg but my body is just SO sensitive to prednisone that 1 mg seems to be doing the trick. Levoquin is also helping I think, I was able to back off even more on my insulin, and my SOB (shortness of breath) is decreasing, also my resting oxygen has come back up to 94, phew. it was bouncin' around all over the place, but since Thursday she seems to be stable.
One dissapointing thing this week, I have not worked out since wednesday. I know I feel gross! I have been SOOOO busy though. It's no excuse and I should have organized my time better, but stilll, Thursday I went to Rae Spoon Concert, soo fun. Friday had some girls over, Saturday Christmas house party in the city, and Sunday, afternoon christmas party and Sunday evening welcome home party...I AM POOPED. I have never had so many naps. I have not napped in months...in the last four days I think I have napped every day. Staying up till three in the morning and up at 9am is not my fortay for four nights in a row!
I also spent all three days updating and editing 150 photos for my website. Christmas is 12 days away! Busy time for jewels. I'm hoping I'll get a D40 or D3000 camera on sale in the holiday sales. Also I have done no Christmas shopping...I bought my dad a present before I left for barbados, but I have lost it...I hid it somewhere in my apartment and cannot find it for the life of me!
I cannot wait to just make some jewellery tomorrow, work out, and relax...no plans tomorrow night...hopefully it will stay that way, although the way things have been going, I'll probably end up doing something! haha
I have another busy weekend this weekend though, so I'd like to be low key throughout this week. Thursday through Saturday I am jam packed with things as well. It's good though...I'd be going nuts just sitting at home...thinking...keeping busy allows me only little glimpses of time to think about things...thinking about the things that have happened in the past month sometimes keeps me from sleeping...so I try not to?...
Next Wednesday is my birthday. 22 years old. Good gosh. what an old fart.
Alright so operation work out like mad this week, no skipping three days like last week! Increase lung function back up to .83 then .85 by January 5th appointment day.
Anyways I guess that is it for now! Hope everyone has their Christmas decorations up (I don't...but that's this week's goal too!)
Thursday, December 10, 2009
today is a good day.
brief update here.
1. I'm going to the rae spoon concert with my best girl tonight. so excited.
2. started levo, oxygen coming back slowly I think? (will update on clinic appt. tomorrow)
4. have been able to up my running program to 1 45 seconds x 5 on my work out! woo almost to the 2 minute mark, never thought i'd see the day.
3. shot my jewellery today. took a million hours. so much work. but it's done. website updated tomorrow.
4. i'm going to hear some great music tonight...just so excited.
5. my weekend is jam packed...keeping busy has been key, and i'm doing really good at keeping busy, last night i fell asleep at 10 oclock first time in a long time! i've been staying out till 1 or 2 in the morning! i needed a good sleep. my cat was nice enough to bring me another mouse last night...this one was already dead in a mouse trap...i don't think beau beau understood...
6. christmas is almost here! which means my birthday is almost here!
7. keep checking for flights back to bdos....i miss it. lind you lucky girl! soak up the sun for me!
8. Natalia walked today down the end of the hallway! she is doing amazing! yay!
what a good day eh?
1. I'm going to the rae spoon concert with my best girl tonight. so excited.
2. started levo, oxygen coming back slowly I think? (will update on clinic appt. tomorrow)
4. have been able to up my running program to 1 45 seconds x 5 on my work out! woo almost to the 2 minute mark, never thought i'd see the day.
3. shot my jewellery today. took a million hours. so much work. but it's done. website updated tomorrow.
4. i'm going to hear some great music tonight...just so excited.
5. my weekend is jam packed...keeping busy has been key, and i'm doing really good at keeping busy, last night i fell asleep at 10 oclock first time in a long time! i've been staying out till 1 or 2 in the morning! i needed a good sleep. my cat was nice enough to bring me another mouse last night...this one was already dead in a mouse trap...i don't think beau beau understood...
6. christmas is almost here! which means my birthday is almost here!
7. keep checking for flights back to bdos....i miss it. lind you lucky girl! soak up the sun for me!
8. Natalia walked today down the end of the hallway! she is doing amazing! yay!
what a good day eh?
Monday, December 7, 2009
Sunday, December 6, 2009
breathe a sigh of relief!
alright I worked out yesterday and i can breathe a sigh of relief! I was still able to do my normal work out regime. This week i hope to increase and push myself to one minute and 45 seconds instead of the usual one minute thirty second interval running spurts that i've been doing.
Bad news is, inflammation city is back with a vengence. I've been back two days from Barbados adn my lungs are tight and short of breath...no infection because my blood sugars are doing miraculously well. I even ate maple syrup and french toast this morning, without insulin! ladies and gentlemen sugar central and no insulin was needed. good news to no infection. but i am still having hempotisis every now and then...old stuff though...not sure what it is. Will ask the docs on Tuesday.
Tomorrow is a Hattitude photo shoot with new Christmas gifts for the website. Thursday I am going to a concert to see Rae Spoon click the name to listen to some of his tunes. Bah love them! "Come on forest fire...burn the disco down" very very good. Check him out if you haven't...and yes it is a male, even though it is hard to grasp because it sounds so much like a woman. Anyways good news on the exercise front! bad news on the asthma and inflammation front...maybe they will have something else for me to try some other puffer on Tuesday...I really do not want to increase my prednisone, but it seems to be the only thing to combat a tight chest....sigh.
Also another poo thing, my oxygen levels down in bdos were sitting at 96, 97 resting by the end of the trip, unheard of for me! (normal people sit at 98 oxygen and when you go below 88, that is when you require oxygen through nasal prongs) and now today they are bouncing around from 90-93....I am sitting here being cold with lower oxygen, tight chest...is it silly that I'm not moving to barbados? okay, okay, okay.... I'll move if EVERY single promises to come visit me....deal?
Bad news is, inflammation city is back with a vengence. I've been back two days from Barbados adn my lungs are tight and short of breath...no infection because my blood sugars are doing miraculously well. I even ate maple syrup and french toast this morning, without insulin! ladies and gentlemen sugar central and no insulin was needed. good news to no infection. but i am still having hempotisis every now and then...old stuff though...not sure what it is. Will ask the docs on Tuesday.
Tomorrow is a Hattitude photo shoot with new Christmas gifts for the website. Thursday I am going to a concert to see Rae Spoon click the name to listen to some of his tunes. Bah love them! "Come on forest fire...burn the disco down" very very good. Check him out if you haven't...and yes it is a male, even though it is hard to grasp because it sounds so much like a woman. Anyways good news on the exercise front! bad news on the asthma and inflammation front...maybe they will have something else for me to try some other puffer on Tuesday...I really do not want to increase my prednisone, but it seems to be the only thing to combat a tight chest....sigh.
Also another poo thing, my oxygen levels down in bdos were sitting at 96, 97 resting by the end of the trip, unheard of for me! (normal people sit at 98 oxygen and when you go below 88, that is when you require oxygen through nasal prongs) and now today they are bouncing around from 90-93....I am sitting here being cold with lower oxygen, tight chest...is it silly that I'm not moving to barbados? okay, okay, okay.... I'll move if EVERY single promises to come visit me....deal?
Saturday, December 5, 2009
great vacation!
Well I'd like the title of this blog to be home sweet home...but definitely that is not fitting, since it is not sweet, not sweet at all to be home from Barbados and the sun and the sea!
There are a ton of memories here. He is everywhere, yuck. It is hard to forget someone, when stuff reminds you of them, and is always in your face.
My dear friend K left a "Hattitude" dollie print thing on my desk! so cute when I got home!
Man best vacation ever though. I don't know, there is just something about Barbados that is just...great. 12 days is not long enough...it never is down there though eh? Already planning next trip back...that always seems to be the case. Once you get home, your always scheming on how to get back. Have a little more cash flow now that no trip to New Zealand is needed! Always trying to find a positive out of the negative, or I would go crazy. You should see the list I have compiled of positive things so far...some of them are teeny tiny, but hey anything helps right? Also planning my trip to Washington for January with my cousin to visit my other cousin...cannot find any cheap flights though! erg!
While I was away my cat totally had abandoned me and taken up residence with my younger brother. She was lonely. This is not any old cat...more like a dog. She follows me around, and knows her name, comes when she is called. Always has to be where I am....so she definitely was hurting while I was away...or so I would imagine...but alas when I got home last night, she totally snubbed me for the first hour, and continued to sit on my brothers lap. Thankfully today she has forgiven me, and is back to sitting on my arms as I type, purring her motor boat.
I'm terrified to get back on the treadmill today, as I have not "worked out" in 12 days! We are always walking in bdos though, so hopefully I will surprise myself and not be totally out of shape! One great thing about Barbados is that I don't constantly see people's backs. Usually when your lung function gets so low with CF a lot of us find we are always staring at people's backs. When I go out with a group, I can probably tell you which friend has the best butt, the nicest back, and roundest shoulders...etc since I am so slow at walking I tend to see this view the most ha, but down in Barbados...I don't see their backs...they see mine! Sometimes I would be walking faster then my mom, who hikes a pretty mean walk! I even carried the groceries on my backpack one day...Normally I find it difficult to carry anything, let alone walk a couple blocks with groceries on my back. Hopefully with keeping up with this running/walking program on the treadmill, I'll continue to increase my lung function and maybe back here in Canada when we go for walks people will start to get a nice view of my butt instead of the other way around! haha
I got another awesome horoscope today!
"With mind planet Mercury moving into your sign today you will find it easier to make sense of some of the things that have happened in recent weeks. As for the things that still confuse you are they really worth worrying about?"
Sometimes you just have to read it to reinforce it...is it really worth worrying about?? bigger fish to fry... like maybe some flying fish? (barbados specialty fish haha)
Tomorrow board games and wine night with some girlfriends. So looking forward to it. If you didn't know I'm a board games fanatic. Favourite past time. I have three shelves filled with just board games.
Christmas is coming. Feels weird when I was just wearing my summer dress and drinking a rum punch from a fancy glass yesterday afternoon? Although I did buy one Christmas present while I was down there. Still on the hunt for a baby Christmas tree for my apartment!
Also for the last seven months, I had a picc line...and for the past two weeks I have been picc line free! Feels great! FREEDOM
There are a ton of memories here. He is everywhere, yuck. It is hard to forget someone, when stuff reminds you of them, and is always in your face.
My dear friend K left a "Hattitude" dollie print thing on my desk! so cute when I got home!
Man best vacation ever though. I don't know, there is just something about Barbados that is just...great. 12 days is not long enough...it never is down there though eh? Already planning next trip back...that always seems to be the case. Once you get home, your always scheming on how to get back. Have a little more cash flow now that no trip to New Zealand is needed! Always trying to find a positive out of the negative, or I would go crazy. You should see the list I have compiled of positive things so far...some of them are teeny tiny, but hey anything helps right? Also planning my trip to Washington for January with my cousin to visit my other cousin...cannot find any cheap flights though! erg!
While I was away my cat totally had abandoned me and taken up residence with my younger brother. She was lonely. This is not any old cat...more like a dog. She follows me around, and knows her name, comes when she is called. Always has to be where I am....so she definitely was hurting while I was away...or so I would imagine...but alas when I got home last night, she totally snubbed me for the first hour, and continued to sit on my brothers lap. Thankfully today she has forgiven me, and is back to sitting on my arms as I type, purring her motor boat.
I'm terrified to get back on the treadmill today, as I have not "worked out" in 12 days! We are always walking in bdos though, so hopefully I will surprise myself and not be totally out of shape! One great thing about Barbados is that I don't constantly see people's backs. Usually when your lung function gets so low with CF a lot of us find we are always staring at people's backs. When I go out with a group, I can probably tell you which friend has the best butt, the nicest back, and roundest shoulders...etc since I am so slow at walking I tend to see this view the most ha, but down in Barbados...I don't see their backs...they see mine! Sometimes I would be walking faster then my mom, who hikes a pretty mean walk! I even carried the groceries on my backpack one day...Normally I find it difficult to carry anything, let alone walk a couple blocks with groceries on my back. Hopefully with keeping up with this running/walking program on the treadmill, I'll continue to increase my lung function and maybe back here in Canada when we go for walks people will start to get a nice view of my butt instead of the other way around! haha
I got another awesome horoscope today!
"With mind planet Mercury moving into your sign today you will find it easier to make sense of some of the things that have happened in recent weeks. As for the things that still confuse you are they really worth worrying about?"
Sometimes you just have to read it to reinforce it...is it really worth worrying about?? bigger fish to fry... like maybe some flying fish? (barbados specialty fish haha)
Tomorrow board games and wine night with some girlfriends. So looking forward to it. If you didn't know I'm a board games fanatic. Favourite past time. I have three shelves filled with just board games.
Christmas is coming. Feels weird when I was just wearing my summer dress and drinking a rum punch from a fancy glass yesterday afternoon? Although I did buy one Christmas present while I was down there. Still on the hunt for a baby Christmas tree for my apartment!
Also for the last seven months, I had a picc line...and for the past two weeks I have been picc line free! Feels great! FREEDOM
Tuesday, December 1, 2009
stick your body in the ocean and shake it all around
"I have been in [barbados] for ten days. My blood is made from the water of this place. I can feel it. How it slides through my body and shapes me."
I love Barbados...what a nice way to heal a broken heart, no? 2 week vacation in the sun?
I found this horoscope while I was down here at the beginning of the holidays, when I was still in a really sad place. It is a nice horoscope and I like it. So I'll write it here to remember it incase I lose the ripped piece of paper.
"Capricorn: This Winter your stellar work and enviable style will make you a frequent topic of conversation. April brings a promotion; romantic adventures are in store come August."
Seems like a pretty good horoscope to me.
It sure is hot down here in bdos. Me and my mom don't quite remember it ever being this hot.
We took a bus into oistins today to the fish market, at 4, when they were gutting and cleaning all the fish for the evening. It was quite an expierence...we didn't feel totally comfy...but not totally threatened either...it was an adventure...haha definitly lots of limin' goin on at the bars at 4 in the afternoon so you can imagine the types. Dad goes home tomorrow. Mac and Grandma left yesterday. I have been trying to avoid the sun, lying in the shade on the beach, yet still i am browning up just walking to the bus stop. I think the medication, cipro and septra are making my skin extra sensative to being tanned...at least I am not burning though...a little red in the face but I feel like that is again just the meds.
Since I've been down here, my acne on my forhead has also cleared up (again acne was caused due to the meds, prednisone!) Also for all you CF'ers out there...my mucus is SOO much thinner down here, it is like I am on pulmuzyme or hypertonic saline (which I guess in away I am on it all the time, breathing in the ocean air 24/7) all the time, it just falls out of you, effortless to cough up. sooo much nicer then back in canada, hacking away to get the awful junk up, which leaves you sooo tired (sorry for all you no CF'ers and too much info. reading this! hah)
Also my leg cramps which were caused I think from symbicourt and other meds, have dissapeared since I've been here, I tell ya...this is the place to be to cure: heart breaks, leg cramps, face bumps, anything that ails ya...stick your body in the salt sea, breathe deep in the air, and let yourself be healed! hah
Update on Natalia, she is in the step down unit (amazing that she is there already after what she has endured! no more ICU, yay!) and almost breathing on her own without the ventillator, Ithink only at night time. There is talk she might even be home for Scarlett's first Christmas. That will be great. I am sending positive thoughts that they have as smooth a ride as she can from here on out!
I love Barbados...what a nice way to heal a broken heart, no? 2 week vacation in the sun?
I found this horoscope while I was down here at the beginning of the holidays, when I was still in a really sad place. It is a nice horoscope and I like it. So I'll write it here to remember it incase I lose the ripped piece of paper.
"Capricorn: This Winter your stellar work and enviable style will make you a frequent topic of conversation. April brings a promotion; romantic adventures are in store come August."
Seems like a pretty good horoscope to me.
It sure is hot down here in bdos. Me and my mom don't quite remember it ever being this hot.
We took a bus into oistins today to the fish market, at 4, when they were gutting and cleaning all the fish for the evening. It was quite an expierence...we didn't feel totally comfy...but not totally threatened either...it was an adventure...haha definitly lots of limin' goin on at the bars at 4 in the afternoon so you can imagine the types. Dad goes home tomorrow. Mac and Grandma left yesterday. I have been trying to avoid the sun, lying in the shade on the beach, yet still i am browning up just walking to the bus stop. I think the medication, cipro and septra are making my skin extra sensative to being tanned...at least I am not burning though...a little red in the face but I feel like that is again just the meds.
Since I've been down here, my acne on my forhead has also cleared up (again acne was caused due to the meds, prednisone!) Also for all you CF'ers out there...my mucus is SOO much thinner down here, it is like I am on pulmuzyme or hypertonic saline (which I guess in away I am on it all the time, breathing in the ocean air 24/7) all the time, it just falls out of you, effortless to cough up. sooo much nicer then back in canada, hacking away to get the awful junk up, which leaves you sooo tired (sorry for all you no CF'ers and too much info. reading this! hah)
Also my leg cramps which were caused I think from symbicourt and other meds, have dissapeared since I've been here, I tell ya...this is the place to be to cure: heart breaks, leg cramps, face bumps, anything that ails ya...stick your body in the salt sea, breathe deep in the air, and let yourself be healed! hah
Update on Natalia, she is in the step down unit (amazing that she is there already after what she has endured! no more ICU, yay!) and almost breathing on her own without the ventillator, Ithink only at night time. There is talk she might even be home for Scarlett's first Christmas. That will be great. I am sending positive thoughts that they have as smooth a ride as she can from here on out!
Saturday, November 28, 2009
is it snowing in canada yet?
i have a craving for ice cream maple syrup and chocolate chips.
sun is fab. going to basheba tomorrow to watch a surfing competition.
saw mr. impact tonight. sigh. fabulous as always.
sun is fab. going to basheba tomorrow to watch a surfing competition.
saw mr. impact tonight. sigh. fabulous as always.
Thursday, November 26, 2009
barbados
well we're here in lovely barbados. its' very hot and humid this time. been swimming every day, looove tasting the salt water. i am such a salt phene. i am waiting for my little brother to wake up and to start my tobi mask then to get out on the beach again. i've been hiding in the shade though not wanting to get burned since i'm on cipro. so far so good. i went out in the sun for a walk on the beach yesterday, but then quickly put my big hat back on and sat back under the palm tree. so far no burns. phew.
at the airport we ran in to some trouble with all my meds of course...one woman had the galls to come up to me and say "your holding up the line" i was so shocked i had to actually ask her "are you talking to me" i thought she was talking to the security people, telling htem to hurry up, i had to ask her again "are you kidding me, are you actually talking to me right now?" "oh my god are you kidding me" i was in shock, i had never had someone come up to me and say to me, you are holding up the line, you should not have done this, and blah blah. well...i lost it on the lady. i have never lost it on anyone. i just said those things to her after i realized she actually was talking to me "and i said...i have cystic fibrosis so i need all these things etc etc" basically saying...get outta my face lady haha my little brother saw this going on and thought i was yelling at the security guards.
also on the plane i had to use oxygen the whole time! i probably have needed to use oxygen on planes for years and just never knew it. thats why as soon as i used to get on a plane i would fall right to sleep maybe cause my oxygen was always so low, well i tested it on the plane with my oximeter adn it was in the 80's the whole time, so i put the oxygen on the whole trip until we got below 28,000 feet, then i didn't need it anymore. man though it really sucked wearing nasal prongs for 4 plus hours. i have only ever worn them for an hour max while working out...but they really suck for longer then that.
I'm slowly beginning to heal my heart that has been shattered into a million tiny little pieces., then stepped on, and poured acid on, and then burned again...and again...and then again? haha... each day gets a little bit easier. it comes in waves, but it's always a constant there. it's weird to think that he is no longer part of my life...weird that when i go home, he won't be there...i hope it's not true that it takes half the time you dated someone to get over them...cause i sure do not want to keep feeling like this for that long...it is exhausting feeling like this. at least the sun and of course the infamous rum punches are helping! sigh....
anyways it's just about time to start my tobi mask. pancakes are in the process of being cooked, the beach is calling! dissapointment though we went to our old favourite ice cream place yesterday and they closed down! they had the best ice cream on the island...little brother was majorly dissapointed! sending everyone some sun rays back home!
oh also natalia is stable with her new lungs! a new battle has begun but she has her new lungs and they are breathing! yay. go natalia. what a fighter!
at the airport we ran in to some trouble with all my meds of course...one woman had the galls to come up to me and say "your holding up the line" i was so shocked i had to actually ask her "are you talking to me" i thought she was talking to the security people, telling htem to hurry up, i had to ask her again "are you kidding me, are you actually talking to me right now?" "oh my god are you kidding me" i was in shock, i had never had someone come up to me and say to me, you are holding up the line, you should not have done this, and blah blah. well...i lost it on the lady. i have never lost it on anyone. i just said those things to her after i realized she actually was talking to me "and i said...i have cystic fibrosis so i need all these things etc etc" basically saying...get outta my face lady haha my little brother saw this going on and thought i was yelling at the security guards.
also on the plane i had to use oxygen the whole time! i probably have needed to use oxygen on planes for years and just never knew it. thats why as soon as i used to get on a plane i would fall right to sleep maybe cause my oxygen was always so low, well i tested it on the plane with my oximeter adn it was in the 80's the whole time, so i put the oxygen on the whole trip until we got below 28,000 feet, then i didn't need it anymore. man though it really sucked wearing nasal prongs for 4 plus hours. i have only ever worn them for an hour max while working out...but they really suck for longer then that.
I'm slowly beginning to heal my heart that has been shattered into a million tiny little pieces., then stepped on, and poured acid on, and then burned again...and again...and then again? haha... each day gets a little bit easier. it comes in waves, but it's always a constant there. it's weird to think that he is no longer part of my life...weird that when i go home, he won't be there...i hope it's not true that it takes half the time you dated someone to get over them...cause i sure do not want to keep feeling like this for that long...it is exhausting feeling like this. at least the sun and of course the infamous rum punches are helping! sigh....
anyways it's just about time to start my tobi mask. pancakes are in the process of being cooked, the beach is calling! dissapointment though we went to our old favourite ice cream place yesterday and they closed down! they had the best ice cream on the island...little brother was majorly dissapointed! sending everyone some sun rays back home!
oh also natalia is stable with her new lungs! a new battle has begun but she has her new lungs and they are breathing! yay. go natalia. what a fighter!
Saturday, November 21, 2009
Natalia gets the call!!!
Yay today is a good day. Natalia got the call for her lungs!!!! Thank you so much to the donor family who was able to give Natalia, Scarlett and Martin a second chance. Natalia I am thinking of you this afternoon as you get some new working lungs!
Wednesday, November 18, 2009
Lung function UP...spirits Low
Eva. 65_redrosesToday I had clinic, and for the first time in months, my lung function was up! .83 liters ladies and gentlmen! woo. I am on week four of this 'running' program. yesterday was SOOO hard to do it, because turns out I had a nasty infection brewing despite my increased lung function. My white blood cell count was up to 21! I have darker bad tasting mucus...bacteria is back and fighting it's way to make me sick!
so the game plan...since I am suppose to leaving for Barbados in six days...folks six days, and my little lungs could not have just held tough! cooome on...although my body has had an excuse...little bit of a stressful week last week, but still...really I needed this vacation now more then ever! oh well if the orals don't work by friday, then we'll go in January. I am going down to the hospital on Sunday to get my line pulled if everything works. I'm hoping because we caught it early again (thanks blood sugars) that orals will be able to kick it.
I am starting cipro and septra though. I have not been on cipro in years, because I never really thought it worked for me...well I took it for the first time tonight, and I started getting real itchy all over...could have been the cute wool dress I was wearing, or my new wool prayer shawl(bless you m. lovely lady)....but I am sitting in my pj's now, and still itching...so I guess I will have to get an allergy test. Why do us CF'ers have to become allergic to antibiotics? I guess I am lucky though since thus far I have not become allergic to anything...as my cystic cysta says..."whoever is in charge, should get a letter of complaint!"
so hopefully these oral antibiotics will work for me in three days and I'll get my picc line pulled on sunday and be on a plane monday morning, chasing the blues away with some rum punches on the beach in the heat!
Did everyone catch the documentary 65_redroses last night...phew that was a tough watch. If you didn't see it, you can check it out here http://www.cbc.ca/video/#/Shows/The_Passionate_Eye/ID=1333883430....not for the faint of heart though...they do not sugar coat ANYTHING. it was a really well done documentary though....really tough to watch though
Here's Eva, the star of the movie's live journal http://65redroses.livejournal.com/
She posted a great newspaper article about the movie on her blog. She is waiting for her SECOND double lung transplant...I hope she gets her call soon. She is just such a beautiful spirit. I hope this video has inspired and given people the opportunity to sign their organ donor cards. In Vancouver after the film was aired at the film festival, they noticed a huge increase in donors, hopefully in ontario and across the nation, it will have the same effects.
This is part of one of her first entries online, “There is a part of me that [my family] will never understand… and that I deal with every day of my life,” “I need somewhere to vent. To let go and not always be motivating and inspiring. I need somewhere to let my fears go unleashed.”
I need somewhere to let my fears go unleashed...well said Eva my girl.
My fears...from last night...I can't shake that documentary...one day that will be my reality. It was so raw, so real.
Sunday, November 15, 2009
Tomorrow Evening 10:00pm
Tomorrow on CBC's Passionate Eye is a documentary about a girl, Eva, in BC waiting for a lung transplant, it was aired at the Vancouver film festival this year. It is an hour long version of the documentary. Eva got her lungs two years ago, and they filmed her process through it. It's on Monday November 16th, 2009, at 10:00pm. Check out a little bit about her story here. http://www.vancouversun.com/health/Film%20with%20rough%20start%20happy%20ending/2216676/story.html
Check it out tomorrow evening!
I'm off to work out on the tread mill, dreading it, as I have had raised blood sugars, darker mucus and coughed up blood yesterday...I'm hoping it's not an infection, and that it's just my body under going super super stress from this last weeks fiasco? Lets hope so. I have CF clinic on Tuesday and I really wanted to have increased my lung function, had a little set back this week, but hopefully it won't have decreased! I've also been decreasing my prednisone, every two days I am at 11.5mg, then for the two days inbetween I'm down to 11mg. I think my water retention is a lot less as I have been dropping to 11mg of pred. thank goodness, not so puffy a face anymore!
Check it out tomorrow evening!
I'm off to work out on the tread mill, dreading it, as I have had raised blood sugars, darker mucus and coughed up blood yesterday...I'm hoping it's not an infection, and that it's just my body under going super super stress from this last weeks fiasco? Lets hope so. I have CF clinic on Tuesday and I really wanted to have increased my lung function, had a little set back this week, but hopefully it won't have decreased! I've also been decreasing my prednisone, every two days I am at 11.5mg, then for the two days inbetween I'm down to 11mg. I think my water retention is a lot less as I have been dropping to 11mg of pred. thank goodness, not so puffy a face anymore!
Thursday, November 12, 2009
Organ Donation
Please spread the word about organ donation...this woman who I have started following her blog via the internet is dying waiting for her double lung transplant. Natalia has a beautiful daughter Scarlett, and husband and family, and she recently took a turn for the worst, as her bottom lungs collapsed, she coughs up more blood every day, and now today she was put on a ventilator and transported to a different hospital to wait for her new lungs.
She was featured in a great article in the star the other week "blogging till the last breath".
She also is being feature in a three part series on CBC "On a mission" click on the link for the first installment http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs.html of the series.
Here is the second link to watch after your done the first video. http://www.cbc.ca/video/#/News/TV_Shows/Connect_with_Mark_Kelley/ID=1327354374. if this link doens't work for you you can try this one http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs-pt-two.html
Send out positive thoughts and vibes to Natalia please.....she needs these lungs so much.
She was featured in a great article in the star the other week "blogging till the last breath".
She also is being feature in a three part series on CBC "On a mission" click on the link for the first installment http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs.html of the series.
Here is the second link to watch after your done the first video. http://www.cbc.ca/video/#/News/TV_Shows/Connect_with_Mark_Kelley/ID=1327354374. if this link doens't work for you you can try this one http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs-pt-two.html
Send out positive thoughts and vibes to Natalia please.....she needs these lungs so much.
Wednesday, November 11, 2009
margaritas in november...when is barbados? 1 rum punch please
Welp...(in the word of someone near and dear to my heart) it has been a rough 24 hours...
I won't get into all the details....those that know me well, already know what has happened...my soul is sad...only word to describe it. I'm just sad. Didn't think this is how things would happen...but when one door closes, another one opens... and I know in my case, not just one will open, but many many many and I'm looking forward to them all opening and me walking through them all.
Currently listening to "you can't handle me" by robyn...it's fitting a in way.
I'm listening to a play list from Barbados last December, amazing trip. I will cherish it forever...another hard one to do...but it's okay. What doesn't kill you makes you stronger? silly saying I guess... I'm glad I'm not bitter like so many...my soul is just sad you know? Five years of having someone part of your life...and then not...it's going to be so weird. but it's okay...it's just sad. I don't know what other word to say. Just sad that the timing was wrong, and that I have myself together maybe...and they don't? Half of you don't know what I'm talking about, so I'll just change the subject to an amazing thing!
I worked out today, I am now up to 1 minute and thirty seconds running at 4.0mph with an incline of 2.5 and walking fast for 5 minutes at 3.4mph repeated four times with cool and warm up...and today ladies and gentlemen was the easiest I have ever done. It was incredible. Besides the upset stomach all day, the raised blood sugar from stress of everything that has happened, thankfully my CF lungs are under control. It almost felt like I didn't even work out today. It was so easy. I am so grateful that this was the case.
In the words of bob..."everything's going to be alright"....but damn boy...my soul is sad.
Also I had two margaritas tonight with my mom to lighten the mood...thanks Linds for making me smile for the first time today and reminding me of my love for margaritas haha
Barbados is so soon. I cannot wait to hang out on the beach with my little brother. Family is key. My cousin from the states called me tonight. I lurve her. Good talk. Family is always there for you...
I won't get into all the details....those that know me well, already know what has happened...my soul is sad...only word to describe it. I'm just sad. Didn't think this is how things would happen...but when one door closes, another one opens... and I know in my case, not just one will open, but many many many and I'm looking forward to them all opening and me walking through them all.
Currently listening to "you can't handle me" by robyn...it's fitting a in way.
I'm listening to a play list from Barbados last December, amazing trip. I will cherish it forever...another hard one to do...but it's okay. What doesn't kill you makes you stronger? silly saying I guess... I'm glad I'm not bitter like so many...my soul is just sad you know? Five years of having someone part of your life...and then not...it's going to be so weird. but it's okay...it's just sad. I don't know what other word to say. Just sad that the timing was wrong, and that I have myself together maybe...and they don't? Half of you don't know what I'm talking about, so I'll just change the subject to an amazing thing!
I worked out today, I am now up to 1 minute and thirty seconds running at 4.0mph with an incline of 2.5 and walking fast for 5 minutes at 3.4mph repeated four times with cool and warm up...and today ladies and gentlemen was the easiest I have ever done. It was incredible. Besides the upset stomach all day, the raised blood sugar from stress of everything that has happened, thankfully my CF lungs are under control. It almost felt like I didn't even work out today. It was so easy. I am so grateful that this was the case.
In the words of bob..."everything's going to be alright"....but damn boy...my soul is sad.
Also I had two margaritas tonight with my mom to lighten the mood...thanks Linds for making me smile for the first time today and reminding me of my love for margaritas haha
Barbados is so soon. I cannot wait to hang out on the beach with my little brother. Family is key. My cousin from the states called me tonight. I lurve her. Good talk. Family is always there for you...
Wednesday, November 4, 2009
New York City
so far this fall i've been doing pretty good on my list of things that i wanted to complete with my time off!
Tomorrow I'm off to New York City. I'm so excited! I spent all evening baking food and grocery shopping and packing. we have a feast of food for the 10 hour road trip me and three friends are making! (lucky for me, they all hate my driving, so I don't have to drive!)
My blood sugars have been a bit high the last two days...I'm hoping its' just my body fighting the h1n1 vaccine and not the start of a CF infection. My blood sugars are an early warning sign before i get the regular CF signs that I am starting to get an infection. Barbados is in 20 days, I can't get sick now! ahhh barbados. Cannot wait!
oh also I did the running program again today. Was still able to run for one minute 15 seconds at 4.0mph incline of 2.5 and walk fast at 3.4mph incline of 2.5 for five minutes repeated four times, i also was able to drop my oxygen level...so on that front everything seems good. I laid down in my bed for a nap today for the first time in months! I'm really hoping the napping, the high blood sugars are all just because of the vaccine and my body fighting it...
i'll post some pictures of new york when i get home! yay! we leave tomrorow at 7, i'd better get to bed!
Tomorrow I'm off to New York City. I'm so excited! I spent all evening baking food and grocery shopping and packing. we have a feast of food for the 10 hour road trip me and three friends are making! (lucky for me, they all hate my driving, so I don't have to drive!)
My blood sugars have been a bit high the last two days...I'm hoping its' just my body fighting the h1n1 vaccine and not the start of a CF infection. My blood sugars are an early warning sign before i get the regular CF signs that I am starting to get an infection. Barbados is in 20 days, I can't get sick now! ahhh barbados. Cannot wait!
oh also I did the running program again today. Was still able to run for one minute 15 seconds at 4.0mph incline of 2.5 and walk fast at 3.4mph incline of 2.5 for five minutes repeated four times, i also was able to drop my oxygen level...so on that front everything seems good. I laid down in my bed for a nap today for the first time in months! I'm really hoping the napping, the high blood sugars are all just because of the vaccine and my body fighting it...
i'll post some pictures of new york when i get home! yay! we leave tomrorow at 7, i'd better get to bed!
Monday, November 2, 2009
H1N1 and halloween.
well I finally got the shot. I have been fretting for a week and a half and stressing out on how I was goign to get this shot. There is a shortage of vaccines, 5 hour lines up, and my CF clinic does not even have it yet. Well I finally got it at my university. It was posted no where that the university had it, so when I got there, there was three people ahead of me. Walked right in, got the shot adn was done. Then I asked the nurse if my mom needed to get it, since I just got it. She's like you live wiht your mom, and you have CF, she needs to get it, and today. My mom was originally turned away when we said she was a caregiver, because the front desk woman said that only high risk people are getting them. This nurse was insistent that my mom be vaccinated today too, since I had CF and was in SUCH a high risk category. So we both got our shots today. phew. what a load off my shoulders. So much stress gone from my life! boy does the h1n1 shot pack some punch though! Now i can start looking forward to New York City on Thursday!!! yay
Also Halloween was awesome. R and R's wedding was amazing. So much fun, they did their wedding just lovely. Not corny, or classic, just perfect and them. It was beautiful.
The wedding Party. So pretty. 
Dancing up a storm.
Our table. Lucky # 5.
Laughter is the best medicine, especially on halloween.
love for a 1940's girl, and a blues brother, Elwood.
My hat was my favourite part...and my fur stole.
Also Halloween was awesome. R and R's wedding was amazing. So much fun, they did their wedding just lovely. Not corny, or classic, just perfect and them. It was beautiful.
The wedding Party. So pretty. 
Dancing up a storm.
Our table. Lucky # 5.
Laughter is the best medicine, especially on halloween.
love for a 1940's girl, and a blues brother, Elwood.
My hat was my favourite part...and my fur stole.
Saturday, October 31, 2009
first week of running program
well I completed my first week of the running program. I was able to get in four works out so far since monday. Hopefully Sunday I will get one more in, although I am going to a wedding (on halloween, I am super excited) tonight and staying over night downtown, so I probably won't feel much to working out. I find on the days that I do work out though my face is less puffy (it's puffy from the prednisone). I guess working out distributes the water weight or something. Just one more reason to keep at the exercise. My oxygen levels are doing really well too, 95 and 96 resting. woo. I've noticed so many improvements over the last four months of working out. Now instead of it being a rarity if I did work one day, now a days it's the opposite and it's extremely weird and rare if I DON'T work out on a day.
I was able to up my running from the original 1 minute run at 4.0mph, incline of 2.5, then walk 5 fast at 3.4mph incline of 2.5, repeat 4 times, to running for 1 minute and 15 seconds...I know it may not seem like a huge increase to some, but believe me, when your running on 1/5th of the normal person's lung function, running is a huge deal...and that extra 15 seconds is such a struggle, gasping, but I keep going, and pushing myself. I don't think I'll be able to do 2 minutes by next week, like the program calls for, but hopefully by the end of next week I'll be able to increase it to 1 minute and 30 seconds.
I'm just doing a mask, then I have to pack for the wedding tonight. It's a masquerade themed wedding/dress up in costume if you like. I'm going as a woman from the 1940's/50's. I have a vintage fur stole, vintage dress, and hat, and brown long gloves. It should be so fun. Happy Halloween everyone!
I was able to up my running from the original 1 minute run at 4.0mph, incline of 2.5, then walk 5 fast at 3.4mph incline of 2.5, repeat 4 times, to running for 1 minute and 15 seconds...I know it may not seem like a huge increase to some, but believe me, when your running on 1/5th of the normal person's lung function, running is a huge deal...and that extra 15 seconds is such a struggle, gasping, but I keep going, and pushing myself. I don't think I'll be able to do 2 minutes by next week, like the program calls for, but hopefully by the end of next week I'll be able to increase it to 1 minute and 30 seconds.
I'm just doing a mask, then I have to pack for the wedding tonight. It's a masquerade themed wedding/dress up in costume if you like. I'm going as a woman from the 1940's/50's. I have a vintage fur stole, vintage dress, and hat, and brown long gloves. It should be so fun. Happy Halloween everyone!
Tuesday, October 27, 2009
running? me? i'll give it a whirl...
So yesterday I started a simliar running/exercise program to run sick boy run. this was his work out regime three months ago and now he is able to run for 30 minutes and he just started out running 1 minute. incredible.
I don't think I'll be able to do it as fast as him, due to my lung function being much much less then his, but I'm working on it. Yesterday I did the one minute running. I was not able to do that four months ago. Today I will run for one minute increments again with an incline of 2.5. I never do flat surfaces anymore. Hopefully I'll be able to get up to 10 minutes of running in the next few months. We shall see! Wish me luck.
I don't think I'll be able to do it as fast as him, due to my lung function being much much less then his, but I'm working on it. Yesterday I did the one minute running. I was not able to do that four months ago. Today I will run for one minute increments again with an incline of 2.5. I never do flat surfaces anymore. Hopefully I'll be able to get up to 10 minutes of running in the next few months. We shall see! Wish me luck.
| Mon | Tues | Wed | Thurs | Friday | Sat. or Sun. | |
| Week 1 | Walk 6 min., run 1 min. Repeat 3 times (total 21 min.) | Repeat Monday's workout | Repeat Monday's workout | |||
| Week 2 | Walk 5 min., run 2 min. Repeat 4 times (total 28 min.) | Repeat Monday's workout | Repeat Monday's workout | |||
| Week 3 | Walk 3 min., run 4 min. Repeat 4 times (total 28 min.) | Repeat Monday's workout | Repeat Monday's workout | Repeat Monday's workout | ||
| Week 4 | Walk 2 min., run 5 min. Repeat 4 times (total 28 min.) | Repeat Monday's workout | Repeat Monday's workout | Repeat Monday's workout | ||
| Week 5 | Walk 2 min., run 8 min. Repeat 3 times (total 30 min.) | Repeat Monday's workout | Repeat Monday's workout | Repeat Monday's workout | ||
| Week 6 | Walk 2 min., run 9 min. Repeat 3 times (total 33 min.) | Repeat Monday's workout | Repeat Monday's workout | Repeat Monday's workout | ||
| Week 7 | Walk 1 min., run 11 min. Repeat 3 times (total 36 min.) | Repeat Monday's workout | Repeat Monday's workout | Repeat Monday's workout | ||
| Week 8 | Walk 5 min., run 20 min., walk 5 min. (total 30 min.) | Walk 5 min., run 23 min., walk 5 min. (total 33 min.) | Walk 5 min., run 26 min., walk 5 min. (total 36 min.) | Walk 5 min., run 30 min., walk 5 min. (total 40 min.) |
Sunday, October 25, 2009
no more oxygen nasal prongs. check this out.
sooo is this less obtrusive then nasal prongs??
Will I look like I'm talking on a head set instead? I think I'll use this in New York, and find some sort of way to stick the tubing down...It's easy to pull off when I go into stores or we stop walking. I just really need it for the long walks in NYC. At least I'll still be getting my exercise in when we go! Also I'll be able to use this on the beach in barbados, little less inconspicuous then the nasal prongs?? Juries still out. I still have to test it out on the treadmill and see if it actually works with walking.
Friday, October 23, 2009
Stable. How much do we really know about our food?
I had clinic on Tuesday and I am completely stable. My numbers are still at 0.81 liters. I was able to stop the oral antibiotics. My weight is at 118, the perfect weight I think for a CF'er at just 5'4 feet tall.
They kept my picc line in, but it's just a safety measure, they are going to wait to pull it right before Barbados. That will be a good week, picc line out, sun, sand and surf. I cannot wait.
Also I have decided I'm getting the H1N1 vaccine. My doctor explained it to me...and now I am on board. I think the risks of not getting it, out weight the risks of getting it. It was made just like the normal flu vaccine, and it seems just the media hyping it up. I don't think it will be available to take though till the end of November, So i will have to wait until I get back from Barbados in December to get it. I'm sticking with my exercise routine. It feels wonderful. I really think that is what has helped me these past few months stay so stable week after week. Also I started symbicourt to help combat the asthma. Hopefully that will help with the short of breath, and the asthma morning coughing fits, and the whistling cough!
How much do we really know about our food?
I also saw Food INC last night. Definitly a must see. I am changing my eating habits pronto. I have already found though since I've been working out these past few months, my body has kind of been telling me, don't eat that processed salami or sausages, or fast food. My body seems to only be craving good food, which is fine by me!
Food INC was really good though, all about the food we're eating and how consumers are totally left in the dark. It wasn't gory or anything, like some of the documentry out there. I went away not wanting to become a vegan or anything, but wanting to eat free range and non antibitoic meat. There was one farmer who factory farmed chickens in the documentry and who is now allergic to all antibitoics. ummm no thanks, definitly don't need that. So we're goign to start buying free range meat with as minimal anitbiotic useage as possible.
check out the trailer!
They kept my picc line in, but it's just a safety measure, they are going to wait to pull it right before Barbados. That will be a good week, picc line out, sun, sand and surf. I cannot wait.
Also I have decided I'm getting the H1N1 vaccine. My doctor explained it to me...and now I am on board. I think the risks of not getting it, out weight the risks of getting it. It was made just like the normal flu vaccine, and it seems just the media hyping it up. I don't think it will be available to take though till the end of November, So i will have to wait until I get back from Barbados in December to get it. I'm sticking with my exercise routine. It feels wonderful. I really think that is what has helped me these past few months stay so stable week after week. Also I started symbicourt to help combat the asthma. Hopefully that will help with the short of breath, and the asthma morning coughing fits, and the whistling cough!
How much do we really know about our food?
I also saw Food INC last night. Definitly a must see. I am changing my eating habits pronto. I have already found though since I've been working out these past few months, my body has kind of been telling me, don't eat that processed salami or sausages, or fast food. My body seems to only be craving good food, which is fine by me!
Food INC was really good though, all about the food we're eating and how consumers are totally left in the dark. It wasn't gory or anything, like some of the documentry out there. I went away not wanting to become a vegan or anything, but wanting to eat free range and non antibitoic meat. There was one farmer who factory farmed chickens in the documentry and who is now allergic to all antibitoics. ummm no thanks, definitly don't need that. So we're goign to start buying free range meat with as minimal anitbiotic useage as possible.
check out the trailer!
are you on oxygen??
Hey CF bloggers, I have found this new thing to instead of the oxygen nasal prongs to wear out and about town. I have not tried it yet, I just got it on Tuesday and I haven't had time to take a photo of it. I just tried to google it, but cannot seem to find a picture of it. I will post one as soon as I borrow my boyfriends camera, probably tomorrow evening.
Basically though it looks like you are wearing a headset and talking on the phone. It is incredible. I only require oxygen when I work out or walk long long distances. I am goign to NYC in 14 days and wanted to bring my oxygen there so I could keep up with the group, since there is a LOT of walking and I want to save my money on cabs ( I just looked at my mastercard bill this month...yikes!) so I was all set to bring my regular old nasal prongs, but then a respiraologist technician suggested this head gear type deal. It looks like I'm just a business woman talking on the phone...you can just call me holly wood. no big deal. haha
It's interesting how it works, basically you put the "mouth piece" near your mouth and the oxygen is suppose to create like a mushroom type cloud when it comes out of the piece to go over your nose and mouth when you breathe in. It won't work for everyone, but becuase I don't need very much oxygen when I walk long distances, I think it will do the trick for me while I'm in NYC.
Also I was fretting about how I was going to keep up with my exercise program while I'm in Barbados for 12 days, but I totally feel comferable wearing this head set out on the beach for a power hike for my exercise. I'll have to post photos of it, so you can get the full effect of it, and then maybe for all of you guys out there on oxygen can give this a whirl, because sometimes the nasal prongs are sore after awhile!
Monday, October 19, 2009
i LOVE halloween.
i love halloween. it is my favourite time of year. I carved pumpkins with my dearest friend tonight. They are such good ones!
Here are the pumpkins we carved! sooo much fun! we also watched little woman while doing it. such a classic. I wish we still were able to dress like that. Those big dresses and bows.
I'm going to make pumpkin people over the weekend too! I'll post pictures of those guys soon.
Here are the pumpkins we carved! sooo much fun! we also watched little woman while doing it. such a classic. I wish we still were able to dress like that. Those big dresses and bows.I'm going to make pumpkin people over the weekend too! I'll post pictures of those guys soon.
the perks of having diabetes....also calling all CF'ers
so here is one positive aspect of having cystic fibrosis related diabetes, it allows me to know when I have an infection, even before I have the usual CF symptoms (short of breath, dark mucus, increased cough, feeling lathargic). Diabetes, blood sugars, if they're low and in normal range, allowing me to take less insulin, and waking up fasting at low numbers, also tells me when my infection has cleared, without needing a blood test to know that my white blood cell count is better.
Ladies and gentlemen, my blood sugars are incredibly normal in months! It's great, I'm waking up at 5.1mmol fasting in the morning, AND get this, I don't even need insulin for my breakfast! It is great. I haven't been able to eat breakfast without insulin since...July? One less needle poke! hey I'll take the breaks where I can get them! Small victories are the key. Seems like these orals have really helped....oh also other good news, I was able to squeeze in three works out last week despite being super busy. My oxygen levels have gotten up to 96 resting! (woah huge news, have not been that since February?) pays to keep working out!
Attention fellow CF'ers
now here's the problem, which i'm posing to all other CF'ers out there....I am having the worst time with my asthmatic componant. I have a dry whistly cough. I am sometimes short of breath, which I attribute to the asthma. I have already upped my pulmicort to the maximum (4 puffs morning and night, and 2 in the afternoon) I really want to keep decreasing my prednisone, which is probably why I am having the increased symptoms of asthma since prednisone helps with that...but I was just wondering is there anything that you guys use, any other puffers, or even natural things to help with asthma??? It is sooo annoying now that I have this infection under control, only to have to combat inflammed airways because of asthma. You would think asthma would be cured by now...it seems so silly.
Anyways so if anyone has an suggestions, pllleeease comment on my blog. I am in desperate need, and am going to clinic tomorrow and am writing down a list of possible puffers/drugs to go on for asthma so I can keep decreasing this awful prednisone.
Ladies and gentlemen, my blood sugars are incredibly normal in months! It's great, I'm waking up at 5.1mmol fasting in the morning, AND get this, I don't even need insulin for my breakfast! It is great. I haven't been able to eat breakfast without insulin since...July? One less needle poke! hey I'll take the breaks where I can get them! Small victories are the key. Seems like these orals have really helped....oh also other good news, I was able to squeeze in three works out last week despite being super busy. My oxygen levels have gotten up to 96 resting! (woah huge news, have not been that since February?) pays to keep working out!
Attention fellow CF'ers
now here's the problem, which i'm posing to all other CF'ers out there....I am having the worst time with my asthmatic componant. I have a dry whistly cough. I am sometimes short of breath, which I attribute to the asthma. I have already upped my pulmicort to the maximum (4 puffs morning and night, and 2 in the afternoon) I really want to keep decreasing my prednisone, which is probably why I am having the increased symptoms of asthma since prednisone helps with that...but I was just wondering is there anything that you guys use, any other puffers, or even natural things to help with asthma??? It is sooo annoying now that I have this infection under control, only to have to combat inflammed airways because of asthma. You would think asthma would be cured by now...it seems so silly.
Anyways so if anyone has an suggestions, pllleeease comment on my blog. I am in desperate need, and am going to clinic tomorrow and am writing down a list of possible puffers/drugs to go on for asthma so I can keep decreasing this awful prednisone.
Monday, October 12, 2009
Things I am Thankful for.
First off I am extremly thankful for my family. My cousins, My aunts and Uncles, My brothers, My mom and Dad, My Grandmas and my Boyfriend. They are my heart and soul and are with me through so much (like today doing a photo shoot, thanks soooo much girls, really appreciate it!)
I am incredibly thankful that I am growing up in the 21st century, for it allows me to connect through the world wide web with friends who I never would have gotten a chance to know (Laby j'adore!) It allows me to read other cystas and firbos blogs and learn and share and educate.
I am incredibly grateful that I can still get on the treadmill and FEEL like working out. I am thankful that it has been three and half months of exercising and I have not quit! I want to do more! (Help me think of a six month anniversary thing to do!)
I am thankful that today when I put on my oximeter (a finger machine that reads my oxygen levels, anything above 90 you don't need oxygen, 97-99 is normal for the average person on this machine) and this morning at resting it was bouncing around from 93-95! woo. Normally it bounces around from 92-93.
I am thankful for my hands, for they allow me to create my beautiful jewellery.
I am thankful for pets for my cat Beau brings me so much joy into my life.
I am thankful to be alive, to take each breath (no matter how crackly and full of mucus it may be haha) in the morning!
I am thankful that this thanksgiving was wonderful and I got to spend it at the boyfriends cottage....although I am not thankful that it hailed one day...
I am thankful I get to go back to Barbados in November.
I am thankful for hot chocolate on a cold day.
I am SO thankful, that I live in Canada and have access to free health care and wonderful physicians.
I am thankful for fire places and wool sweatres.
I am thankful for just being.
I hope everyone had a great thanksgiving!
Friday, October 9, 2009
4 x work out this week...made it!
so I snuck in my fourth work out of the week. even though it was only for 30 minutes this morning. I still did it! I didn't think I would get it in, because I'm heading up to my boyfriends cottage this weekend for thanksgiving, then back home on sunday for my family's thanksgiving. It feels soo good to have already worked out today. I love morning work outs because not only are the endorphins flowing through me, but I have the whole day to myself now, no dreading getting on the treadmill in the afternoon or evening!
Oxygen levels are pretty constant, back to normal when I work out. I've been having a little bit more short of breath since wednesday, but hopefully that will clear itself up. The oxygen company came for my three month assessment. I also ordered some oxygen for when I go to NYC (less then a month, woo!) and for when I go to Barbados, (less then two months, woo!) She tested me and my oxygen dropped to 78 (below 90 is when you require oxygen, hence when I need it when I work out) when I was doing my 5 minute warm up without the aid of the oxygen concentrator, YIKES. also sorry for some of the typos, my cat is sunning herself under my lamp and cleaning herself while pushing on my arms trying to get into the most comfortable position on my desk. My cat is....well...she's kind of fat, so there isn't much room for my computer, my business stuff, and her all to fit nicely on the desk....but she's trying to anyways.
I hope you all have a wooonderfullll thanksgiving. I cannot wait to eat some mashed potatoes, and PIE. I have the biggest cravings for pie, since I've been on prednisone! Happy thanksgiving and please keep Natalia, a fellow CF'er waiting for a double lung TX in your thoughts, she really really needs those lungs!
Oxygen levels are pretty constant, back to normal when I work out. I've been having a little bit more short of breath since wednesday, but hopefully that will clear itself up. The oxygen company came for my three month assessment. I also ordered some oxygen for when I go to NYC (less then a month, woo!) and for when I go to Barbados, (less then two months, woo!) She tested me and my oxygen dropped to 78 (below 90 is when you require oxygen, hence when I need it when I work out) when I was doing my 5 minute warm up without the aid of the oxygen concentrator, YIKES. also sorry for some of the typos, my cat is sunning herself under my lamp and cleaning herself while pushing on my arms trying to get into the most comfortable position on my desk. My cat is....well...she's kind of fat, so there isn't much room for my computer, my business stuff, and her all to fit nicely on the desk....but she's trying to anyways.
I hope you all have a wooonderfullll thanksgiving. I cannot wait to eat some mashed potatoes, and PIE. I have the biggest cravings for pie, since I've been on prednisone! Happy thanksgiving and please keep Natalia, a fellow CF'er waiting for a double lung TX in your thoughts, she really really needs those lungs!
Wednesday, October 7, 2009
The handshake...a neanderthal idea
In this day and age, you think someone would have invented something other then the handshake when greeting someone. It seems so cave manish. With swin flu, colds, bird flu, chicken pox, e-coli, regular flu, other diseases, etc, etc, etc...why shake someones hand to say hello? and what is with the greetings of kissing people on the lips? Who invented these ridiculous rituals? and why have we held on to them until the 21st century...seriously we need to adapt and change. The rest of our society has, why have our greetings not caught up with the 21st century? Why is the wave not more common? I do the wave. I LOVE the wave. The wave is great. haha I try all the time to do just the wave...or try to have my hands busy when I am being introduced to someone, like a drink in hand, and paper in the other or something of similar effect, but you always get those people who insist you shake their hand, even if your hands are completey full, even if you use this line "oh i just washed my hands, their wet, sorry" you always get the one guy who is like "oh thats okay i don't mind, wet handshake me" or the one guy who holds the paper or glass for you so your right hand is free to shake theirs...sigh. take a hint. It is so Neanderthal like...
Today I was listening to my boyfriends ipod and a song came on by a rapper saying how he'll shake your hand but keeps the purrell close by...come on world get with it. stop with the hand shakes, stop spreading these diseases around to everyone...
Perhaps the worst is healthcare workers shaking my hands. Everytime we meet a new respirologist, nurse, tech, or anyone else, they want to shake my hand. I would expect shaking of the hand from a regular joe but from a health care worker, in a hospital where the place is just filling with germs, where they tell you not to even put your purse on the ground for fear of whats on the floor...and then they have the galls to try to shake my hand! I don't think so ladies and gentlemen...I use the ol "oh i dont' shake hands in hospitals...germs, sorry (insert gianormous smile here, so they don't feel offended)"...you'd think health care workers would know...I guess they missed that memo. well that's my Wednesday rant for you!
Also side note, I am going to Barbados. Good warm, glorious, salty air for 12 whole days, with my grandmama, little brother (not so little, he just had his 19th birthday two days ago, BIRTHDAY shout out to him!) and mom. sigh...I cannot wait. Countdown is on kids. Countdown is on lungs. Few more weeks till your breathin' easy old girls. Lungs please just don't get sick on me in the mean time!
For all you friends and family out there, if your sick at all, please please don't come visit our household! It would really really majorly be a bummer to get sick before this vacation...I need a vacation after this 6 month stint of sickness...did you know I've had my picc in for five months...hoy boy. hopefully that comes out in two weeks! but more importantly this vacation is a vacation for my lungs. these girls do way better in warm salty air! so sick people, please stay away! thank you kindly in advance, sincerely H and her lovely lovable lungs.
Positive vibes and energetic thoughts please for natalia
I want to send out all the positive thoughts and vibes I can muster up to Natalia. She is a fellow CF'er check out her blog by clicking here. She has a few month old baby daughter, a wonderful husband, and she is waiting for a double lung transplant at Toronto General Hospital. Last week she found out she was retaining CO2...which means, when your retaining Carbon Dioxide, it is the hallmark of type II or final respiratory failure...please think of her and send out vibes that she gets her lungs soon. very very very soon.
Sometimes life isn't fair on what it throws at us...someone a few months ago said to me that it was not fair that all the good people seem to have all the bad things happen to them (meaning me having cystic fibrosis)...maybe it's because all the good people are the only ones that can handle the bad things...
If someone who was already rotten were to be handed a chronic illness or progressive terminal disease, I don't think they would fare too well. It takes a strong mind and stronger attitude to get through the cards we have been dealt.
I think perhaps bad things happen to good people because it's meant to teach others something...one of my closest friends passed away when I was 19 from cancer. I think her having cancer was meant to teach everyone around her something...I think me having cystic fibrosis is meant to teach the people I know something...maybe it's just a simple thing, like maybe a boy I once knew in high school now has signed his organ donor card because he knew me, or maybe it's a girlfriend I met in university and maybe she saw how I struggled with the little things in life, like climbing a flight of stairs to my apartment and maybe now she no longer takes for granted that she didn't get an A+ on her paper because she knows now that she CAN climb a flight of stairs and go dancing...maybe it taught someone else that I have encountered not to sweat the small stuff...that life is a gift and it shouldn't be wasted. I like to think that me having this disease has a purpose you know? Like it's meant to teach others, and even myself that Life is too short. So enjoy the things you love, spend it with the people you love, laugh often and live. Don't worry about the future...it'll come, whether you sit and chew your nails about it, or not. Who knows what comes after this life....if this is the only one we got, make the most of it. Live, take a deep breath each morning and be thankful that you can take that breath....after all if life gives you lemons...you just have to make some wildjumbleberry juice.
Sometimes life isn't fair on what it throws at us...someone a few months ago said to me that it was not fair that all the good people seem to have all the bad things happen to them (meaning me having cystic fibrosis)...maybe it's because all the good people are the only ones that can handle the bad things...
If someone who was already rotten were to be handed a chronic illness or progressive terminal disease, I don't think they would fare too well. It takes a strong mind and stronger attitude to get through the cards we have been dealt.
I think perhaps bad things happen to good people because it's meant to teach others something...one of my closest friends passed away when I was 19 from cancer. I think her having cancer was meant to teach everyone around her something...I think me having cystic fibrosis is meant to teach the people I know something...maybe it's just a simple thing, like maybe a boy I once knew in high school now has signed his organ donor card because he knew me, or maybe it's a girlfriend I met in university and maybe she saw how I struggled with the little things in life, like climbing a flight of stairs to my apartment and maybe now she no longer takes for granted that she didn't get an A+ on her paper because she knows now that she CAN climb a flight of stairs and go dancing...maybe it taught someone else that I have encountered not to sweat the small stuff...that life is a gift and it shouldn't be wasted. I like to think that me having this disease has a purpose you know? Like it's meant to teach others, and even myself that Life is too short. So enjoy the things you love, spend it with the people you love, laugh often and live. Don't worry about the future...it'll come, whether you sit and chew your nails about it, or not. Who knows what comes after this life....if this is the only one we got, make the most of it. Live, take a deep breath each morning and be thankful that you can take that breath....after all if life gives you lemons...you just have to make some wildjumbleberry juice.
Breathing Easierrrrr
Yesterday I worked out for 35 minutes, better then Saturday,which was only 30 minutes, and I felt like I was going to throw up half the time from breathing so hard, but today I was able to work out for 40 minutes which was better then yesterday, still had to stop a few times to catch my breath, but my oxygen needs were decreased as well, so all in all better! I'm workin' my way back up, slowly but surely. It seems to take about a week for the decrease in prednisone to wear off, by Thursday I should be tickled pink perfect again.
For my work out regime now I have decided to switch it up, so before I dropped prednisone and starting again today, this is my routine 2.8mph 5 minute warm up at incline of 2.5 oxygen about 3 liters of oxygen. 3.8mph at incline of 2.5 for 10 minutes with oxygen needs 4-6,7 liters. 3.4mph for 5 minutes at incline of 7, oxygen needs 7-8 (on a bad day, last week before prednisone drop i could get away with only 7 liters) then I do 10 more minutes of 3.4 at incline of 2.5 and then a 10 minute cool down all adding up to 40 minutes. I've already done two work outs this week, and it's only Tuesday! I was not going to even work out today...but then I got a text at 10:30 from my cysta saying her lung function and weight was up at clinic (yay) and that motivated me to get my butt on the treadmill at 11! thanks girl for the text!
For my work out regime now I have decided to switch it up, so before I dropped prednisone and starting again today, this is my routine 2.8mph 5 minute warm up at incline of 2.5 oxygen about 3 liters of oxygen. 3.8mph at incline of 2.5 for 10 minutes with oxygen needs 4-6,7 liters. 3.4mph for 5 minutes at incline of 7, oxygen needs 7-8 (on a bad day, last week before prednisone drop i could get away with only 7 liters) then I do 10 more minutes of 3.4 at incline of 2.5 and then a 10 minute cool down all adding up to 40 minutes. I've already done two work outs this week, and it's only Tuesday! I was not going to even work out today...but then I got a text at 10:30 from my cysta saying her lung function and weight was up at clinic (yay) and that motivated me to get my butt on the treadmill at 11! thanks girl for the text!
Monday, October 5, 2009
CF Commerical
I came across this video after my cystic sista went to sleep so I was forced to roam the internet solo msn (she's a bit under the weather though, so i will cut her some slack for heading to bed!) whilst i finished off my night mask ...very powerful video.
No I won't give up...no I won't break down... I will be strong even if it all goes wrong....someone's watching over me.
No I won't give up...no I won't break down... I will be strong even if it all goes wrong....someone's watching over me.
Sunday, October 4, 2009
Newspaper Story
I follow RunSickBoyRun Blog "running because my life depends on it". Ronnie is a huge inspiration and is one of the reasons why I keep motivating myself to get on the treadmill each day, even when I don't want to. He was featured in the Arizona Star, and for those of you who don't read his blog, here is the article for your reading pleasure!
Tucson Region
Disease becomes a motivator
Tucsonan helping others while facing loss of insurance
ARIZONA DAILY STAR
Tucson, Arizona | Published: 10.04.2009
Ronnie Sharpe stares ahead as he runs, his breaths shallow and his pace slow. He sweats heavily and coughs so hard that ribs protrude from his thick torso. Frequently, he spits out mouthfuls of phlegm.
The 29-year-old Tucson native obsessively looks at the sports watch clocking his 30-minute goal. Singer Gavin DeGraw's "Free" plays on his iPod. Sharpe hates to run; he absolutely loathes it. But he forces himself to do it at least three times a week.
Sharpe, a Catalina High School and University of Arizona graduate, has cystic fibrosis — a genetic disease that affects the lungs and digestive system, and kills half of the people who have it by the age of 37. There's no cure, and Sharpe already has lost several friends to the disease.
He's garnered national attention recently, having won a contest sponsored by a vitamin company. The contest, titled "Fuel Your Greatness," asked entrants for inspiring stories. He wrote about his running.
A 50-day hospital stay earlier this year inspired the running fixation and a blog titled "RunSickBoyRun," which now gets an average 300 unique viewers per day from all around the world.
And a local executive whose child has cystic fibrosis is helping fund Sharpe's latest project, a soon-to-launch Web site that he hopes will be international in scope. CysticLife is designed to be a hub for his "cystas" and "fibros," and their friends, loved ones and the public.
But not everything is going well for Sharpe — he's set to lose his health insurance.
His mother, Christine Hiemstra, works in accounting for the University of Arizona's Campus Agricultural Center, and all his life Sharpe has been on her health policy. He's been allowed to stay on the insurance into adulthood because state coverage has always been extended to employees' dependent adult disabled offspring over the age of 23.
But a bill signed into law by Gov. Jan Brewer last month eliminates coverage for Sharpe and 360 other disabled adult offspring of state employees. Also cut from coverage are domestic partners of state employees and employees' offspring ages 23 and 24 who are full-time students. Altogether, about 2,200 people will be affected, Arizona Department of Administration data show.
Though the law took effect Thursday, those slated to lose their insurance are not expected to be cut from their plans until Nov. 24 at the earliest, state officials say. The legislation is still under legal review.
"I have faith," Hiemstra said. "I just don't believe the state will look at all these disabled adults and kick them to the curb."
Sharpe shares his mother's positive attitude. He credits it with keeping him healthy in the face of an illness that is the most common fatal genetically transmitted disease among North America's white population.
"I kind of signed a lease with God on my life. At some point, I'm going to have to return it to him. But I'm going to go way over on the miles," Sharpe said. "We do have more control over our CF than we hold ourselves accountable for. My lung function has gone up 10 percent since I started my running blog."
When Sharpe was born in 1980, the life expectancy for a cystic fibrosis baby was 20.
Dr. Mark Brown, a professor of clinical pediatrics at the University of Arizona who has been treating cystic fibrosis patients since 1983, said the UA's Cystic Fibrosis Center has a patient who is 69.
While he stressed that's rare, Brown also noted that survival rates have been steadily increasing due to better treatments and improved drugs.
The development of artificial enzymes that help those with cystic fibrosis to digest their food was a huge breakthrough during the 1960s. Before that, many children died of malnutrition, Brown said.
Sharpe takes nine pills containing artificial enzymes before each meal.
Because of digestive troubles, most people with cystic fibrosis are thin. And many, including Sharpe, have raspy voices from coughing and from some of their inhaled medications.
Sharpe is not thin. He stands nearly 5 feet 9 inches and weighs 185 pounds. Growing up, he played football, soccer, basketball and baseball.
His lung function isn't as strong as it was when he was in high school, and he now spends more time in the hospital than in the past. His average now is 90 days per year. He never gave up athletics, but after his illness earlier this year he decided to make a firmer commitment to fitness.
Each morning, he walks and coughs to remove what he calls the "junky stuff" from his lungs.
"If I eat too late or shower too early, I'll throw everything up," he said last week during a walk through his parents' midtown neighborhood with his dog, Jezzabel, and his girlfriend, Mandi Melin, 22. "My food digests really slow. Throughout the night I'll be coughing and swallowing mucus without even knowing."
He follows the walk with a shower, where he coughs more.
"The shower sounds like a war zone," Melin said.
After his shower, he begins the first of his four daily treatments. Each lasts 45 to 75 minutes. He puts on a vest with built-in equipment and that sounds like a washing machine and pounds his chest to help shake mucus from his lungs. He also uses a nebulizer, which delivers medications directly to the lungs. Before Sharpe got the vest, Hiemstra had to pound her son by hand — twice a day for 20 years.
During and between treatments, Sharpe is on his computer. He sends out short messages by Twitter, writes blog entries and works on the launch of CysticLife. Its funding came from local executive Court Gettel, whose son, Walker, has the disease. Gettel and Sharpe met at a fundraising gala last year.
"Ronnie has a lot of passion for life," Gettel said.
Melin said Sharpe is often on the phone with parents of newly diagnosed children, and also with teenagers who often want to speak with someone other than their friends or parents. Sharpe is a frequent presence at Cystic Fibrosis Foundation events in both Tucson and in Phoenix, where Melin lives.
RunSickBoyRun has sparked emotional debate by posters on issues such as whether people with the disease should be working full-time jobs, and what parents should do about having more children if they are both carriers of the cystic fibrosis gene, which means there's a 25 percent chance their baby will be born with the disease.
Melin graduated from Syracuse University in December and now works full time for CysticLife. She also helps with the RunSickBoyRun blog and is a constant by Sharpe's side.
"Mandi is my rock," Sharpe wrote in a recent blog. "I had my mom to lean on for so many years (and still do) that I knew that I would need a strong and confident woman in my life in order to make a relationship work long term. . . . Mandi does the perfect job of kicking me in the butt, but then bringing me ice."
The risks of exercising with cystic fibrosis include low oxygen levels and ruptured blood vessels in the lungs, which is extremely dangerous. That's why while Sharpe runs, Melin runs alongside, constantly checking phlegm he spits out for spots of blood.
Melin also sets Sharpe's running goals. He'd like to run one of the cystic fibrosis organized walks, which are 5 kilometers. But his runs are often difficult. Last week, he said his phlegm felt like Super Glue, and he couldn't speak for several minutes after he was finished.
Brown, the UMC doctor, said exercise is good not only for clearing out the mucus but also because the big breaths required for exercise help keep the lungs open. And exercise, among other things, releases hormones that promote the development of muscle tissue, so the benefits outweigh the risks, Brown said.
While Sharpe and his mother have faith that the insurance problem will sort itself out, Melin is more concerned. One of his recent hospital stays ran up a bill of nearly $400,000. He's had numerous surgeries, and his medications alone are thousands of dollars per month.
Sharpe has applied for the state's form of Medicaid, the Arizona Health Care Cost Containment System, in the past. Though he doesn't have an income, he has too much money in the bank to qualify, he said.
Melin said the solution may be marrying Sharpe and finding a job with good enough benefits to cover them both.
For now, Sharpe and Melin remain hopeful that a legal review of the new legislation will rule in Sharpe's favor. In the meantime, Sharpe is focusing on increasing awareness of a disease he believes will be cured one day.
And he continues to run.
"When you are feeling sick, that's when you want to push harder," he said. "For most chronic illnesses, a lot of it is your mentality. If you sit on a couch all day and do nothing but feeling sorry for yourself, you are going to die."
Saturday, October 3, 2009
No Excuses.
Here is what I watch...and then I get my butt on the treadmill, even if it's a bad day, and I've coughed up streaks of blood, and almost thrown up because my prednisone is a lower dose and my breathing sucks as I get bootin' it on the treadmill. Just another reason to "JUST DO IT"...it's really going to make the difference.
Three month anniversary
Today is the big day! I've now officially been working out 3-4 times a week for three months. Improvements I've noticed: stomach is nicer, legs are more trim, feel better, require less oxygen when working out, less congested on days that I work out, was able to kick an infection with oral antibiotics for the first time in YEARS. all in all exercising has probably saved my life...literally.
Today though was really hard. It was the fourth work out of the week, and boy am I feeling the effects of half a measly mg of prednisone. At one point i had to stop as i worked out becuase i thought i was going to throw up from breathing so hard, and I was just doing my regular routine on the treadmill, that i excelled at only two days ago! prednisone is a tricky tricky drug. I also had to increase my oxygen SOO much today because of the decrease in prednisone. I think it will take about a week for my body to get used to it, and then i'll be able to work out normally again. But hey at least i got on the treadmill, even if it was only for 30 minutes instead of my normal 40.
Tomorrow I go look at elipitcal trainers. They're on sale for half price at canadian tire. Tonight I'm going over to a good friends house from university. I have not seen her in forever, so it will be really nice. She also has been on prednisone (for other health reasons, my roomate went on prednisone this summer for an allergic reaction as well, you think the medical world would be able to come up with another steroid other then prednisone, yet it seems to be the universal drug) anyways so she will be able to feel my pain about the prednisone issues!
Today though was really hard. It was the fourth work out of the week, and boy am I feeling the effects of half a measly mg of prednisone. At one point i had to stop as i worked out becuase i thought i was going to throw up from breathing so hard, and I was just doing my regular routine on the treadmill, that i excelled at only two days ago! prednisone is a tricky tricky drug. I also had to increase my oxygen SOO much today because of the decrease in prednisone. I think it will take about a week for my body to get used to it, and then i'll be able to work out normally again. But hey at least i got on the treadmill, even if it was only for 30 minutes instead of my normal 40.
Tomorrow I go look at elipitcal trainers. They're on sale for half price at canadian tire. Tonight I'm going over to a good friends house from university. I have not seen her in forever, so it will be really nice. She also has been on prednisone (for other health reasons, my roomate went on prednisone this summer for an allergic reaction as well, you think the medical world would be able to come up with another steroid other then prednisone, yet it seems to be the universal drug) anyways so she will be able to feel my pain about the prednisone issues!
Friday, October 2, 2009
Breathing Easy
So I dropped from 12 mg of prednisone to 11.5 mg of prednisone, which the doctors have told me is childs play and I shouldn't feel any effects...WRONG. I am more short of breath (three days after dropping the med, the usual amount of time it takes to feel the effects) and I am coughing and a bit more conjested. It is amazing how much my body is addicted to this steriod. I know it's vain but I totally just want my chipmunk puffy face to go down! haha the steroid makes it all puffed up. I mean I've got graduation photos on the 26th that I have to look good for! haha
It usually takes about a week for me to start feeling better after I drop some mg's of prednisone. So I think by Wednesday I should be good again. I still can't believe my body noticed 0.5mg drop. gesh. This drug is heavy duty.
I didn't get on the treadmill today...I know I know. But my feet hurt so tomorrow will be my fourth time this week. And tomorrow for sure I am getting on that treadmill.
I was reading about a young man who passed away from a lung transplant today...very sad. It sucks actually. If you go through the energy, time and years of waiting for some new lungs, and you are blessed and lucky enough to recieve those new lungs, you shouldn't die afterwards. I can see why some people do not want to go through transplant. This young man had to move away from his home to the nearest transplant facility and he waited on the list for two years, away from friends and family and being sick in and out of hospital. He then recieves these glorious new lungs...and then he was taken away. It's not fair. He should not have died.... I mean come on, he did all the hard work...someone should have given him a break...sigh, it's just not fair. Sending out thoughts to his friends and family....breathe easy now.
It just motivated me even more to get back on the treadmill tomorrow. Also tomorrow will be my three month anniversary of working out, so obviously I must work out on that day!
It usually takes about a week for me to start feeling better after I drop some mg's of prednisone. So I think by Wednesday I should be good again. I still can't believe my body noticed 0.5mg drop. gesh. This drug is heavy duty.
I didn't get on the treadmill today...I know I know. But my feet hurt so tomorrow will be my fourth time this week. And tomorrow for sure I am getting on that treadmill.
I was reading about a young man who passed away from a lung transplant today...very sad. It sucks actually. If you go through the energy, time and years of waiting for some new lungs, and you are blessed and lucky enough to recieve those new lungs, you shouldn't die afterwards. I can see why some people do not want to go through transplant. This young man had to move away from his home to the nearest transplant facility and he waited on the list for two years, away from friends and family and being sick in and out of hospital. He then recieves these glorious new lungs...and then he was taken away. It's not fair. He should not have died.... I mean come on, he did all the hard work...someone should have given him a break...sigh, it's just not fair. Sending out thoughts to his friends and family....breathe easy now.
It just motivated me even more to get back on the treadmill tomorrow. Also tomorrow will be my three month anniversary of working out, so obviously I must work out on that day!
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