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

Tuesday, December 16, 2008

Admission

So they tell me I am going to be admitted, I am staying in. Starting in Ottawa from December 16th until the 23rd, that is 1 week. They want to try new meds on me, and want me to be close in case they aren't any good. These meds are rarely used, and or not yet approved, sure I'll be your Guinea pig. I am in Ottawa right now, and Dad has just left, my room is somewhat cozy. Light burgundy in colour are the door, cupboard and radiator, with white walls. This isn't home, I'll be moved from this room, to another one pretty much exactly the same, but the bed faces the other way. The man in the room next to me likes to sing, I don't know what he's singing, but he sings.

My transplant teleconference is on Thursday. Dr. Aaron says he's going to come, along with Ena, my Mom, Dr. Pakhale and a resident. Dr. Pakhale is one of the new CF doctors, nice lady. Dr. A says he's gonna push to get me on the list... the list... what a sentence, "you'll be put on the list". My body has become so immune to the medications now, we have no choice but to try. 6 months to a year i could be on the list, the list... on my god the list. WOW~!!

I am ready for this, I have done my research, asked my questions, followed blogs of post tranplantees and of the ones who waited and just received, I hope someone that matched me has signed their donor card... have you signed yours?

I am not afraid, I don't want people to pitty me, or feel scared for me. I don't want people to think I am, don't cry for me, there is no reason to cry. I have a great chance to be who I once was. I CANNOT WAIT. When I won't get tired from breathing, i never had that problem before, never fully understood why people said they were so tired when they would breath, now I know. I never fully got it, I never fully understood, i never fully understood.

The anticipation is making my chest ache, of what's to come, knowing I am in the right place, for the right stuff. It's kind of like Real Estate, I have leased this space for almost 30 years, and it's time to find a new tenant. God if your reading this, make sure you find me tenants that want to spend a really long time, a second lifetime.

Saturday, December 13, 2008

Blessed

Well, here it is folks, my newest blog entry.

I have some pretty amazing people in my life. I have just met a few more. I could not imagine not having other people in my life who also have CF. It's a mystery to me, why we all can't share in each others happiness, face to face. but yet, it does not surprise me in the least. Go figure the one illness in this world, where we all want to be together, and talk and share our experiences, does not always allow us to do that. Some patients are sicker than other, or have bacteria growing in their lungs that is highly contagious, yet we all still want to be close to one another.

So tell me, why can't we? I want to talk to my new friends with CF, I want to talk to my old friends with CF, but these bacteria cause us to talk online, on the phone but never face to face. But when someone who has the same strain of bacteria growing, we can be in the same room, because we've already go it. But I want to talk to the ones who don't have to same bacteria as me. WHY CAN'T I TALK TO THEM! I know why, but I don't like it.

I am so blessed to wake up every morning, take a deep breath, and see my husband sleeping next to me. Okay so that rarely happens, he's always gone before I wake up. lol But I know he's there at night. I cannot imagine what he must go through when I am not home. I can manage when I am gone, because I am not thinking about how he's feeling, I am concentrating on getting better. But when I start to feel better, I start to wonder how I could do this to him, how can I marry the most amazing man, and know that I won't be around as long as he will... but then I remember what he said to me one day... "no regrets". I have to admit, he's smarter than I am. I am so blessed to have my family and my friends. Without them, who knows where I would be. It's amazing how many people will be there for you, and for your loved ones when you cant.

I know who my friends are, they are the ones that take care of things when I am sick, they are the ones that lend a helping hand when I can't, they are the ones, that will offer to pick up fast food for me, when I am in the hospital, knowing full well I can't stand the smell and taste of hospital food. It's the phone call to see how I a feeling, the "I poked my head in but you were sleeping" kinds of conversations I like to hear. At least I know someone came by. Being blessed by people I don't even know, or people who barely know me. I have the best life, the best friends and the best family anyone could possibly ask for. I don't know where I would be without them, but when I need them, I know they are there. Thank you, for being there.

I would like you to meet Two of my new CF friends from the US. Cheers ladies!

This is Cara, she's 150% Texan, and loves it. She is an amazing girl, with lot's of love and spiritual value. She embraces all there is to love about love, and life. She is married to a wonderful man, who is in the NAVY, and is currently away on leave. We pray for you everyday Patrick, be safe.



This is Emily, she's the original surfer girl. Well, to me anyhow. She is a California girl, with the heart of an angel. She helped organize the coolest CF fundraiser I have ever seen in my life, and met Laird Hamilton (Pro Surfer, married to Gabby Reese). It was called "PipeLine to a cure" So cool. I just met her recently, and I am happy to make her acquaintance, and welcome her into my family!

Tuesday, December 2, 2008

Shhh, I am trying to sleep...

Let me ask you this... before you fall asleep at night, all the lights are off, the TV is off, you've stopped reading your book, and your pillow talk with your hubby has ceased and you've both said I love you and sweet dreams. You've quietly thought your prayers to your loved one and got your pillow just right, your blankets exactly the way you wanted them, and start dozing off when suddenly, out o no where you just start thinking of the perfect wording for your next blog... what do you do?

This is the story of my life. I seem to get the best ideas at a time when I should be sleeping. Resting my body so will heal. but no... my brain thinks otherwise. I think of my next blog, Christmas, my 30th birthday bonanza and the things I plan to do before then, the letters I plan to write to my old teachers. As if convincing myself that I don't have to pee isn't enough.

So I get out of the most comfortable, none coughing position ever, try to find paper and pen, in the dark, so as not wake the slumbering bear next to me. And when I finally find what I am looking for, that damn U2 song pops into my head. Nooooo!!! So I try to write in the dark, but i know the pen scratches will only wake Yogi, so Boo Boo must change locations.

Here's where it get's weird...I can't go into the living room, because i know I will just turn on the TV, can't go to the computer room, I'll just go online and never get off. The only place left is the bathroom. So I close the door, turn on the light, squint so tight i think my brain is on fire. As my eyes slowly adjust tot he light, i sit on the toilet, I've put the cover down, cross my legs and start to write.

It seems that in order for my brain to shut down, I have to write down whatever it is I am thinking, and what I am writing now, is what I though about last night on the can. I have written many speeches that I would say, should I ever be asked to say something, in accordance with Cystic Fibrosis, writing letters to people that I never intend on sending. Who would have thought that trying to clear your head would be so much work.

With that said, all I can say is this. SLEEPING PILLS MY ASS!!! You would think I have nothing better to do with myself than sit around and write all night. If ever i am asked to write a book about anything, I will have to do it at night, where there is not a soul at all. My memoir should be very, very interesting, when it's finished.

cheers all
Me :)