Cold winter days = Long days inside!

Well, summer and fall have come and gone and I don't feel I am much further ahead in this lung transplant journey. It is turning into a never ending marathon. A marathon I feel I will complete and win eventually, but the miles along the way are very long.

With the cold months upon us, I find myself spending a lot more time at home, where it is warm and comfortable. The days seem to go by much slower, and I find myself thinking about things a lot more now.

Why me? That is one thing that has been on my mind lately. Why me? Why was I chosen to be the one to go through all of these struggles. Is it that I hit the unlucky jackpot with genetics or is it because everyone knows that I am strong and can deal with the battle at hand.

Don't get me wrong, I am not wishing my illnesses on anyone else, I just want to know why me? I don't want anyone to take this as I am feeling sorry for myself either. I am one of those people in the world who has big plans. Plans to finish University, start my teaching career, get married, and start a family. Even though I have all of these dreams and goals in life, I have been thrown a curve-ball. A curve-ball which I intend to hit out of the park, but still I ask myself, why me? Why did I have to be thrown this curve-ball. Why does anyone have to be dealt these cards in life?

I miss all of the things that I could do before. Simple things like laughing, showering, and walking have become chores now. I find myself thinking about all of the dreams I have for my future and that is what is fueling my fire. I tell myself that "one day I will get there, and I will accomplish all of my goals." All while knowing there is a chance I will not. I do not want these thoughts of failure clouding my "road to new lungs marathon." Instead I tell myself to push these thoughts aside and only focus on the positives. I will breathe easy again. I will laugh like crazy again. I will belt out horrible tunes in my car again. I will run around again, free of tubes and coughing fits.

Even though I am remaining relatively stable, it does not make this journey any easier. My life is on hold. I am 23 years old and my life is on hold. I would love to be going out and doing everything that I once did before my lungs turned on me, but instead I find myself consciously thinking about every breath I take and hoping to be able to keep taking many more!

I know this is starting to sound depressing, but I would consider myself the furthest thing from depressed. All of these thoughts have been encouraging me to fight. To fight harder and longer than I ever have before. To keep going. To keep marching forward. I will not let my disease win. I will not let these 23 year old nasty lungs destroy me.

I know that I am strong and capable of fighting this. I have an amazing support system behind me in terms of my family and health care professionals. They are all on my side and will not let me give up either. Giving up would prove that I was dealt a hand in life that I cannot handle. I CAN handle this and I WILL beat it!

So when I get back to thinking "why me," I have to tell myself, "yes" maybe I did lose out on the genetic lottery, but I would not have been dealt this hand if I could and would not handle it. I am a fighter and I WILL NEVER GIVE UP!!!!

Back to the Blogging World.....Again

Well, I'm back again for another not-very-exciting update. And not-very-exciting- only because I haven't received my new windbags yet!

I see the last time I posted was February so I guess I have a little bit to catch up on (if I can remember that far back).

It is the middle of June already.

I guess it wasn't a very exciting winter as I don't really have much to say. I made it through with no hospital admission and have been relatively stable. I'm still going to clinic in Calgary monthly. Those docs down there sure have me on a short leash! Although I must say, they are doing a great job!

I could babble on and on about how I've been feeling, but what's the fun in that. I'm fine.

My PFT's are stable.
My weight is stable.
Not diabetic yet.
Still taking lots of drugs.
Etc, etc.....

First I would like to start by complaining about how sick and tired I am of being on a leash 24/7. And no I don't mean the leash I mentioned earlier (you know, the short one my docs have me on). I mean this 55 foot hose that follows me everywhere and nearly rips my ears off about 2000000 times a day. I mean, I don't even know what it is like to get up off the couch and run to the fridge anymore without ensuring my hose is free of obstacles. Speaking of obstacles, my dog, Chance, is my biggest, most annoying obstacle that I have to overcome on a daily basis. I mean, I know he loves me a lot and wants to follow me around, but stepping/laying on my hose every time I want to go anywhere is just no longer acceptable. Note to self: Research online how to train your dog to stay OFF your oxygen tubing. Other people have this problem, I'm sure. There must be articles about it!

Oh, I do love my dog though. Here let me show you his beautiful before and after pictures of his haircut this year.



















Pretty cute eh?

Another thing I have been thinking about is how I don't even remember what I look like without oxygen on. It has been over 2 years now people! After my transplant I'm going to look in the mirror and not know who it is looking back at me. Also, I've established habits with my oxygen that are going to be hard to break. For example, getting dressed.

Step 1: Oxygen off
Step 2: Shirt off
Step 3: Oxygen back on
Step 4: New shirt on
Step 5: Oxygen off, feed under shirt until it comes out the bottom
Step 6: Oxygen back on, on top of shirt

I mean after transplant, how am I just going to cut out Steps 1, 3, 5, and 6. I am going to reaching for tubes that don't exist and people may look at me strange. Although, changing my shirt in public is not something I am planning on doing a lot of after transplant.

Another thing with this oxygen.....what's it going to be like to just put on a pair of shoes and walk out the front door. I mean right now its a 5-10 minutes ordeal.

Step 1: Walk downstairs
Step 2: Grab portable oxygen
Step 3: Disconnect oxygen tubing from home oxygen
Step 4: Reconnect oxygen to portable oxygen
Step 5: Find and put on shoes
Step 6: Grab a jacket
Step 7: Pick up 2000000 pound machine and lug to vehicle

Think about this one. After transplant I can say goodbye to steps 2, 3, 4 and 7. How exciting, what am I going to do with all my spare time?

Those are just a couple things that I can look forward too after transplant. There are going to be soo many other things that I'll be able to do without worrying about oxygen. Like showering, ooooh showering. That will be nice to do tube-free. I'm starting to realize how dogs feel when they're on a leash. But don't compare me to a dog, because I have much more self control and don't NEED this stupid leash for that reason.

Now that I've complained for a bit, let me tell you about a couple good things!!

1. I became an aunt again. My stepbrother and his wife Trina had another baby, Connor! (see below)
2. My nephew Kaden turned 2
3. Mom and I are going on a mini-vacay to Jasper in July (which I'm super stoked for!)
4. I went to see Luke Bryan in Edmonton (see pics below)
5. Pool ended, which is kind of a bummer, but I'm actually going to play on the team starting in Sept.
6. I volunteer once a week and the mall selling pull  tickets for the hospital
7. There is a big golf tournament hosted by Cheers Pub this weekend and I am volunteering there. They are having the tournament for Cystic Fibrosis. It's going to be awesome.
8. I survived the freezing winter and can now venture outside more!
9. Big Brother is coming back on in 2 weeks! (I can see numerous eye rollings going on right now)
10. I get to go camping again.
11. I got a sweet hammock to lounge in the backyard now!

I know there's more good stuff, I will think of more later!

Yes, that is beer and yes it was damn good!

Mom and I enjoying the show!

My new nephew, Connor, and I.

Kaden's 2nd Birthday!

Baby Connor! Isn't he the cutest?!

Ooh, I have also decided to try and grow another tomato plant on our deck! Wish me luck because I CANNOT wait for fried green tomatoes! 

Right now, I'm getting pretty comfortable with having time to just relax and hang out this summer. I mean work and school, what is that anyway? Don't get me wrong, I'm definitely ready to go back and finish my degree, move out, and start working but right now the sun is shining, I'm feeling good, and the beer is cold (don't worry people, 1 every now and again won't hurt a girl). 

Be back soon! 

Flappy Bird!

Well, I have found one of the most mindless things to do to occupy my time. It is also an addiction that is ruining my life. Two words....FLAPPY BIRD!

I have finally reached a three digit high score and I think it might be time to retire and move on to bigger and better things!!!

Went to CF clinic yesterday and things are going pretty good. I've lost 3 kg's since September so I need to gain at least 1 kg back by the time I go back to clinic in a month or they will not be very impressed and might start talking about a feeding tube. BLAH! That's not happening so I must EAT EAT EAT!

Well I'm still here waiting...

Its been almost 19 months of waiting on the transplant list for new lungs. It is times like these that I wish I could just go on to eBay and buy some new ones! 

Santa forgot to bring me new lungs for Christmas again this year.

I've been lucky and have not been hospitalized since September...knock on wood! My lung function is stable and I'm feeling pretty good, but I'd still like those lungs to hurry the heck up!

What else is new with me since my last post you ask? Well, I had a lovely Christmas, spending time with both my mom and dad. Lots of turkey and fun! And got spoiled, of course! 

Other than Christmas it has just been my daily routine of The Price is Right, Dr. Phil, and Ellen. If nothing else, I'm learning a lot from Dr.Phil. Haha!

I've been poked and prodded a few time since my last post as well. You know, the normal stuff, blood work and port flushes. No biggie anymore!

I try not to let little petty stuff bother me anymore. I always just think that there is bigger things to worry about in life besides the lady that just cut in front of me in line or the employee at McDonalds who forgot to put my sweet and sour sauce in the bag at the drive-thru (not going to lie, that still kind of bugs me, I NEED my sweet and sour sauce to eat my nuggets). Staying positive is pretty easy when I am remaining stable. If I start to take a turn for the worst, watch out, you probably won't want to come within 10 feet of me and my new-found negativity. But when that happens, I have my lovely mom and boyfriend to snap me out of it!

I also enjoyed a lovely day at the spa. 5 hours of being pampered. I was a fantastic day. Mani, pedi, and massage all while be offered chocolate, strawberries, and tea! I might have to splurge and indulge myself again sometime! It was  a great way to forget about everything going on!

I always say that I will try and update sooner, but I always just fall into the same pattern and forget all about updating this thing. I will say it again though....I will try my best to update the blog when I have any new and funny stories to share. Or if I ever get called for transplant I'll have my mom on here keeping everyone up to date!