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.

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!

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!

Lung function UP...spirits Low

Eva. 65_redroses

Today 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.

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!

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.

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...

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!

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.