It is an honor that you are here, Thank you!

Thursday, November 24, 2011

It's not my Thanksgiving, but i am thankful

So today is Thanksgiving in our sister country on The US of A and what am I thankful for, well let me tell you.

I have written a little something for my Donor and his/her family and it goes like this this, while it moves life Jagger...

Okay, so I cannot seem to find this wonderful peice of writing that I has so meticulously placed in a safe place that I, myself cannot find it.  So much for super sleuthing.

Today on our news channel CTV Ottawa, which covers all of Eastern Ontario and part of Western Quebec, my friends Mandi and Ronnie Sharpe made it to the new channel.  They are all the way out in Arizona somewhere and what should my brown eyes see on our news station, but Mandi holding up her pregnancy test.  Yep you heard it hear follks, the Sharpe's have made their way into Canada.  WOOHOO.  If you are on my facebook you can see the whole video there.

On to why I am thankful this american Thanksgiving day.

1) my donor family
2) My family all of them
3) My American CF family, actually all my CF family
4) My faith in God and his creation in me and my donor family
5) You, yep you.  You are here today reeading my blog and knowing that you are here reeading this sure makes me feel alive and loved.

I cannot believe that it will be three years soon that i have been blessed with a new set of lungs.  I might also be blessed with a new job, that will finally allow me to save and visit my friends around the world.  First place to go is Idaho for my good friend Meg's Baby shower in January, then hopefull to Arizona to see Mandi, Ronnie and Makenna, then to Virginia to see Cara and Patrick and maybe have a tour of the Air Force base in Norfolk where "P" works.  TOP GUN I might ass.  Cara's got herself her own little Maverick, although taller and better looking.

My need to visit with other CF'ers is something I have always dreamed about.  We are not suppposed to be in contact with each other, but i don't know if it's the same after transplant.  I will double check with my doctor and see what they say about the whole thing.  I know none opf them have Cepacia or MRSA so maybe it is possible.  When I think of Meg having  a little one, I think about Eva, she woud be so proud of Meg and the tough road she has come down, only to welcome a little man into the world in 2012.

I love babies, you show me a baby and I go nuts.  I decided not to have children as my body had been through enough.  There are just some things I wasn't meant to do.  Give me any baby and I can put them to sleep, I have this thing, this knack I guess you could say.  I have been called the Baby Whisperer!  Give me your restless baby, and i can calm them down, no problem.  It's a thing, I can't explain it. *laughing at myself*

Well there's not much more to say tonight, I will be back tomorrow with some pretty cool news or not.  Depends what happens.

Much love, Happy Thanksgiving to my American Cyster and Fibros.

LOVE LOVE LOVE
Ali



Thursday, October 27, 2011

Why Me?

This is a sad blog today.  A good friend of mine in the UK has passed away.  Rachael and I met online through many friends.  Things are starting to make me wonder why i am here and Rachael didn't make it.  I am attaching the link of her memorial tribute by the BBC in the UK. I have also Dedicated my profile picture to her.


This could be any of us, but Rachael :"Rachy" was someone special to  me.  Those that knew her and followed her know what she went through.  I am losing so many friend cause people don't sign their organ donation cards.  Is it worth that much that you have to take you organs with you, to not be used by anyone else.


Try saving up to 8 lives with major organs and hundred more with tissue, blood and and more.


http://www.bbc.co.uk/news/uk-england-manchester-15486492


Above is the link.  Please read the article, watch the video and think of all the wonderful things you can do,  and the wonderful children and adults you can save.


If you haven't thought about organ donation, please talk to your family.  Make sure your swishes are known with your friends and family.  There is too much sadness in life, if you could save someone when you decide to leave this world, or rather it's your time to leave this world, wouldn't you want to live on through another person.  Rachael can be your daughter, niece, Aunt or granddaughter, why would you chance loosing them again.


Please talk about Organ donation, it saved my life and can save yours when you need it.


Love you Rachael, always and forever!


Ali

Thursday, August 25, 2011

The Good Life,

This video says it all.  Need I say more... Definetly not.

Enjoy!


Love you all

Thank you all

That is all.

Ali

Tuesday, August 23, 2011

Mt favourite Sports & Athletes

I had a dream.  When I was younger, I was taking Synchronized swimming.  Which would help tremendously with keeping the lungs clear, the breathing techniques alone where my physio.  Try holding your breath for 22 seconds, while flailing your legs and dancing underwater, flipping, hanging upside down and counting in your head.  Trying not to forget that you have to keep your legs out of the water, scull and eggbeater when you are preparing for a lift.

DON'T TOUCH THE BOTTOM OF THE POOL, it's a deduction, oh the judges can see it, underwater cameras.  Synchro was my life.  I chose it over gymnastics when I made both competitive teams.  Then I found out to make it big, you have to move to Quebec.  I was 13 years old, do you really think I want to move away from home... ummm no.

I think I spoke of this in earlier writings, but I have to say it again, cause I miss it soooo much.  So I think I might get together with the City of Cornwall and start a Competitive Synchro Club.  The club we have is not competitive, so now I have to get my creative juices starting.  How do I start a club, who do I contact, when do i contact the government, can I get a grant for equipment and manuals.  Will I be able to get the pool time?  Who will supervise?  I am going to need coaches?  Where does it all end, and how do I start.

This is Synchronized swimming...




SYNCHRONIZED SWIMMING = BETTER LUNG CAPACITY
BETTER LUNG CAPACITY = EASY BREATHING




TIME TO ENJOY ONE OF MY FAVOURITE SPORTS!

Thank you for sharing in my interest in Swimming, especially Synchronized Swimming, it's not shown enough, I can only hope to put it on the map here in little ol' Cornwall.

Much Love always
Ali

Tuesday, August 16, 2011

Pin Up and away...

As I sit here listening to Katy Perry I can only think of Pin Up Girls.  No I am not "Gay" and I have no problems with that.  But I think Pin up girls from the 50's, the drawn ones, are some of the best images I have ever seen.

For instance, the used to use the pin up girl to capture the beauty in a woman's body, they used pin=ups to encourage young men to join the army.Navy/Air Force.  some of the best images come from that old time vintage art.  Check this out, it's my facebook profile picture right now.


If I were a young man in the early prime of my life, at a tender age of 18, and want to find out who i really was, I would join the sir force on this photo alone. And there are tones of them lurking around the internet.  They also used pin up girls to advertise.  Not all women look like June Cleaver.  Here is another one looking towards the military aspect of life.


Call me crazy but this is the kind of art I love.  So if ever you are wondering what to get me, get me something tasteful like these.  Probably why I have a fascination with Marilyn Monroe or Norma Jean.  This is one of my favourites of Marilyn Monore.



Marilyn, as true as it get's.  She's beautiful, smart and fun.  Not to mention beautiful.  Andre De Dienes was the first to make Marilyn a household image.  Taking her under his photographic wing when she was 18, and still Norma Jean, he saw potential, and look where it got her.  Fame, fortune and then a sad death.

I will love Marilyn always, her style, her smile, and her photogenic presence is something I will cherish.

I hope everyone can see what I see in Marilyn and not just a sex symbol.

Pin-Up and away.

Cheers
Ali

Sunday, August 7, 2011

My Reverse Bucket List...

As I sat on my ass after the gym, watching Shark Week on Discovery, i have decided to make a reverse bucket list.  The things I would love to do before I die, but can't.  It's very simple actually, you think of all the wonderful adventurous things that you know you won't do and write them down.  Let me show you.


First things first...


#1 - SKYDIVING


#2 - SCUBA DIVING




#3 - CHASE A TORNADO






#4 - VIP SUITE AT A MONTREAL CANADIANS "HABS" GAME




#5 - MEET LANCE ARMSTRONG






If there are things on the list that are missing, one day I will update it.

Who knows I might just meet my mentor, that being Lance, and maybe we'll go sky diving, yeah right!

Or maybe, just maybe, I'll bike in Texas, visit Pat & Cara on their home turf, and bike a few hundred miles with Lance in tow.  Wouldn't that be awesome.

Yeah, it totally would be awesome! 

I LOVE LANCEARMSTRONG!!!!

Thanks for listening!

Love Love Love
Ali

LIVESTRONG


Monday, July 18, 2011

WHAT A WEEKEND!

I had the best weekend I could ever think of.  You see my home town, Cornwall, Ontario have this event every year called Lift-Off.  It's about family, friends, fun and Hot air Balloons.  Oh did I mention the entertainment.  Fantastical.

Each year this event bring in tourism to our little town, and whole lotta fun to be had.  There's a fair set up in the park, and the concerts, oh the concerts are amazing.  The one truly inspirational thing about this festival, is that it speaks to me on a different level.

Before I had my transplant, or after rather, I would tell people that the way I felt when I could breath was like a hot air balloon.  At first it's all crumpled and stuck together in a bag that won't allow it to open up.  When a balloon is set free, and able to open it's cavity it brings beauty and an amazing reflection of what it feels like to be able to breath.

Kinsmen Lift-Off Balloon Festival

To be able to breath freely is like watching a Loon swim, floating along the top of a water passage.  Beautiful.

So see the mechanics of a Hot air balloon is like looking at the mechanics of our breathing system.  Tubes, holes and passages we could never imagine living without.


This year event was a huge success, I can only hope to see some of my friends out there next year.

Cheers and love with arms wide open.  Breathing easy and loving every minute of it.

LOVE LOVE LOVE
Ali

Friday, July 8, 2011

Have You Ever?

Welcome back to another story of what I have ever known to be, or learned.

HAVE YOU EVER...

Hear of a artist by the name of Alex Pangman?  NO!  Well let me introduce you to this soulful jazz singer who bring a whole new meaning to Breathing Easy.  She is a beautiful 33 year old woman, with the voice of Ella Fitzgerald.  I would love to hear her sing some Gershwin.  He voice is hypnotic to say the least.

She was born with CF, and had a double lung transplant in 2008.  Same year as Ashley and myself.  She is a gorgeous red head with the big curls to match her big voice.  She is stunning and  i can't get enough of her, I just cannot.

Alex Pangman

"CFers are tenacious fighters.  We live life to the fullest and when we hit a roadblock, 
we find a way to circumvent it and do other life-enriching things.  
We also tend to live in the moment and squeeze the good out of every day. 
 That helps not being crushed by the chroni-ness of it (CF)"  
~Alex Pangman

(a Quote from an article in the Kin Canada magazine.)

To read the full article, please go to the following link.


her website is : http://www.alexpangman.com

I suggest you get into this gal.  Her music so delightful and enlightening.  Sounds of Judy Garland can be heard in this big voice.

You can buy her albums at amazon.ca  so for the life of all of us.  GO & CHECK IT OUT.

Cheers
Ali

Sunday, June 26, 2011

What's New, what's hot!

Hey Friends,

I have been a bad Blogger.  My last blog was in April, and it's now close to the end of June.  I admit, I am a little upset with myself for not allowing my mind to relax and get things done, but you have to believe me when I say I haven't even had time to finish a book that I started a few months ago.  In fact I think it was the title of my last blog.

So you ask me what's new, well I haven't had much happen that has been of interest to anyone.  In fact it's not even of interest to me.  I work with my father and my husband, and that keeps me entertained during the week, and the weekends have been pretty quiet.
I have, however, been experiencing some swollen hands and feet, that no one seems to know what to do about.  Sleep with your feet elevated, OK I do that, still swollen.  What does Toronto say, nothing, just to drink more water.  YUCK!  My knuckles are hurting, maybe I am getting arthritis or something, that would totally suck.

Not to mention the heat, the heat sucks, that can be a contributing factor to the swelling, but Toronto doesn't know or cannot say for sure.  Why should I call them with something that is bothering me, if my new nurse, doesn't get back to me the same day, and doesn't explain anything to me either.  I do not like the new Transplant Coordinator nurse I have.  I WANT DEBBIE BACK.  She explained everything I never had to worry about waiting a few days before I hear back from her.  Why do they change, when you get used to one person, it should always be the same person.  Pointe Final.

A picture to relax be, because my brain is over powered right now....


Nastia Liukin

Ok, now to log off, and get some real rest.  No more computer, no more lights, just the sound of the wind in the trees, the night bugs and laying next to my hubby.  That is all i need.

LOVE LOVE LOVE to you all
Ali

Sunday, April 3, 2011

Long Walk to Freedom

Long walk to freedom... I have started it, and it's going to take me aq while to read it.  I am on chapter 5 and already I cannot put this book down.  I have two other books by Jodi picoult waiting in the wings to read and I still cannot motivate myself to get on the band wagon and just dive into it.

Maybe it's the distractions that I find myself mixing with, like Golf games on TV, or movies that I want to watch or maybe it's just because I cannot sit still for longer than an hour, unless that part of the book is really interesting.

Well okay maybe it's a little bit of everything all rolled into one... I'm a a bitch i'm a lover , I'm a child... see what  mean.  Deviating from the real reason I am here.

Speaking of Jodi picoult above, I cannot ehlp but realize how much I love her work. 

Some of her books are less than to be desired, but hey, who am I to complain, she makes more money that i do, and there were really only 1 of her books that didn't interest me.  I won't say wich on, because I know others love that book.  Her newest one came out on March 1st, and you can bet I was in line for it.  Well, there was no line up, but I got mysefl a fresh copy right out of the box.  No one had touched it but the guy who printed, and boxed the book, then the girl that took it out of the box.  handed down to be in my hands, the fourth hand that ever touched it.  What a  great feeling.

This will be my book reading entry, and alas, I had lied to you all last pposting, there was a mishap with the number of postings I have.  This is actually my 100th posting, but no one really needs to know that, and those who read this will know now that I have lied to them about the number of postings I have.  I am truly sorry for that.

Well, enough about the books i have read, I will post somethign a litle more interesting tomorrow, as I have got to get some rest.

Loveing you all very much.

Yours always
Ali

Friday, February 25, 2011

My 100th Post!!!!

Ladies & Gentlemen
Madames & Monsieur's

Let me introduce you to BLOG # 100.
Today I want to discuss the reason I am alive today, and the reasons I fight for Cystic Fibrosis.

REASON #1 - My Donor
Today i am able to wake up, take deep breaths and thank God for allowing my this beautiful vision I see everyday.  It may be cold, and it may get wet, but it's snow.  Without my donor, I wouldn't looking out my window and the white blanket of snow that covers the lawn of my apartment building.  The flashing blue light of the plow rushes by and crates a wave of snow over the sides of the road.  Without my donor and their family, I wouldn't be sitting here typing this from my home computer.  I am forever in debt to the harsh decision they had to make that faithful day in February 2009.  Not only was it family day in Ontario for the first time, but i amble to share my family with my donor family.

Freedom of Flight, Breathing easy & flying high


WHY I FIGHT FOR CF - Friends & Family

I don't fight Cf just for me anymore, I never really have.  I have been fighting this battle for everyone I know who has CF, who has conquered the transplant and for those who are in the phase of becoming familiar with the transplant process.  Cystic fibrosis, is who i am, it's what I stand for.  My friends and Family are the reason I fight so hard.  If it weren't for them, I wouldn't be who I am today, they mold me into this great person that i have become.  

When I get the chance to express my emotions or feeling for my Fibros and Cysters, I like to tell them it's not a hindrance to have CF, it's a blessing, what you make of it, is who you are.  Cystic Fibrosis has made me strong, positive and knowledgeable with the illness i have come to call family.  If a little girl i know can fight Leukemia at age 2 and three I think at age 31 I can fight just as hard.  If only the had Make a Wish for adults, that would be awesome.  I would want Box sears at a HABS game playing the leafs, with a pass to visit with both teams before or after the game.  Drink would be on the house, I would invite my family a closest friends.  That has got to be a bit cheaper then a trip for 4 to Disney right?

But i do fight everyday I fight.  Today i have started an IV for Solumedrole again, that same dosage that I was given in November when I had Grade 2 rejection.  I don't have GR2, but my PFT's are low, and that concerns them a little bit.  So I fight, I fight so I can keep seeing the people that mean the world to me, the ones who look up to me, who call me Yaya, and Aunt Alison.  My family needs me, to be strong, i need them to be strong, so we are all strong together no matter what happens.

My passion for a cure drives me to fight harder.  When i see my friends who have gone through transplant like Eva, Ashley, Sean who went in this morning, Amanda, Tim, and maybe Marc soon.  I want them to see, through me, that it can be done.  Amanda and Tim where there when I needed them, and I thank them in my prayers every night.  Thank you guys so much for your help when i went through my TX, it made it easier to see what's around the corner. I can only hope that my experience will help others who have to go through the transplant process.

So in the meantime, i can hope that you will keep praying for me and all of us who suffer and live with CF on a daily basis.  CF isn't easy, it never will be  until a cure is found.  Help fight the fight of CF, and make your donation today.  You never know who you will be helping, it may even be one of your own children one day.

Much love and respect and prayers to you all
Ali

Great Strides 2011 --> this is from last year, but the point is just the same!

Thanks
Ali


Tuesday, February 15, 2011

Anniversaries & More

Well, it's bee too long since I have updates this.

So I hope to be vigilant in this, and expressing my emotions an thoughts with every turn I make.

It was a year aog on February 12th, that the Vancouver Winter olympics started and the Olympic Family lost a friend on the very first day.  To The Georgian Luger, Nodar Kumaritashvili we salut you!

Nodar Kumaritashvili


It was an experience, volunteering in Vancouver, that i will in no certain future forget.  The friends I made, the people I met, and the amount of fun we had.  I will cherish those memories forever.



*** OTHER NEWS ***

Just went to Toronto for my 2year assessment, you guessed it, it has already been 2 years.  Well, two years tomorrow that is.  I cannot believe it.  Since my Grade 2 rejection episode I have been waiting and hoping for the news that is has all be cleared, and thank the Grand Master up above, it has.

I cannot believe that someone I don't know is now a part of me, and who I am.  I admit, I have a short memory now, and tend to forget things, but I would rather that, then to have the latter.  Which we will not discuss here now or ever.

So tomorrow I have planned a 2 year assessment gathering, to thank all my freinds and family for their well wishes and support, it is something less than a miracle that I can do this and feel confident that I will not cry.  Ok, so that's not entirely true, because i am a blubbering boob when it comes to expressing my gratitiude to people.

So, my 2 year assessment blood work shows that I have great blood, everything is where it should be.  But my bloodpressure is high 167/103 and I have a fast heart rate and high cholesterol.  Lucky me, more meds.  I am not lloking forward to the reaction or side effects of these new meds.

No results from my Bronch yet, hopefully today and when that time comes, you will be one of the first people to know.

*** SOMETHING COOL ***

My buddy Ronnie and his wife Mandi are in the process of trying for a baby.  Ronnie has CF, and they had to do IVF in order to use "Ronnie's" specimen.  It's a great stroy, check it out at "Run Sick Boy Run".  Ronnie and Mandi we are all praying and sending you good vibes, Baby vibes.  Love you guys.


Ronnie & Mandi
Well this is all for now.

See you NEXT TIME!!
Ali

P.S.  Sending love to my freind Eva, who passed away March 27th.  Love you Eva!


Eva Markvoort



Tuesday, January 11, 2011

So much to say... so little time to say it in...

Well time for some updates...

On December 10th, I had my port removed.  It was a painful process.  It isn't supposed to be, at all... but like always I have to be different.

Because I had Fibrin tissue on the end of my catheter that my port had, it was time to remove it.  none of knew that I also had Scar tissue built up around the catheter.  Yeah tell me about it.  So as the Doctor is having a difficult tie cutting the PORT from my body, due to scar tissue build up in the holes where the suture the port in, had grown all inside.  So as he's snipping away at the scar tissue there, he didn't know that the catheter would prove to be a hassle.

He had cut the tubing from the port to access it better and as he slowly tugged on the line,it wasn't moving.  But it was very painful.  I could feel the pain in my neck, my back and where the scar tissue had built up.  not pleasant. My Dr actually has to give me an IV of relaxants and pain killers to get it out.

One it came out, I had the privilege of seeing exactly what was causing the problem.  That little bastard thought he wasn't going anywhere, he was happy and content in his warm home.  Don't blame him in the least, ha ha.  It was such a rare occurrence that my Dr. Wanted to keep it to study it some more, and find out how it happened. 

He said "I have never seen this before, can I keep it?  I want to do a study on it" 

How can I say no to that.  I will once again be a part of medical science.  WOOHOO

I can still feel the scar tissue where the port had been.  It's so surreal, but it happened.  The just re cut the scar from the when they put it in, and it barely shows.  Kind of like my transplant scar, that hardly shows also.

I know i haven't been very good at updating this blog. BUT this year things will be a little different.

I went last week, the 4th of January, for a follow-up Bronch to see ow the grade 2 rejection is fairing out. I still have not hear anything, it's only been a week.  I am anxious as I would love to know what is going on inside my chest.  I don't feel sick, I don't have anything to worry about.  NO NEWS S GOOD NEWS, unless you are on the waiting list.

Well, that's all I have right now, I'll let you all know when I know about the Bronch results.

Cheers and love
Ali