Friday, April 2, 2010

Rose Garden

Today I went on a little expedition to the Rose Garden here in Portland. I am sad to say that none of the roses were in bloom yet. BUT the grounds were gorgeous, and the one spot that caught my eye was the Shakespeare garden. It's really just a tribute I suppose. Here is a little picture of it. The quote is what the engraved stone on the wall says. 
It's on a hill, and to get down to the garden you have to go down stairs.....I haven't really done anything active in a while, so I had no idea how hard it really is to have such low lung capacity. I felt like I was going to pass out. I was willing my legs to move half way up the hill. Blagh! It's sick. It makes me feel sick. On the bright side, I got a good workout. :)

Update on the transplant:
All of the insurance stuff is handled! YAY! It's incredibly weird navigating through the world of social security, and medicare. I am so happy about my insurance though, and am deeply in debt to the man who gave us the lowdown on what we needed. He is a miracle. 
So we called our contact at the Cf clinic to tell them we got the insurance stuff handled. Now we are on to the referral part of the game. We will be referred to UW in Seattle, and hopefully go up in the next month to meet the team. I hope it goes that fast anyways. Going up those stairs today made me wonder how long it's going to be before I have to be on oxygen all the time. And that thought made me want to throw myself down the hill. It's amazing how far you can fall in a year. 

I'm off.



Thursday, April 1, 2010

Cca #10: Final-e

Writing these blogs for the past 3 months has been a very great experience for me. I put into words my own personal philosophies to share with you. I hope that you enjoyed them, and maybe took something from them. I realize that maybe I didn't share a lot about myself other than my ideals, so for my last blog that's what I'm going to do.

I'm an only child of a single parent. My dad passed away when I was a baby, and though I don't remember him I hear we had quite the relationship. My mom is my best and most trusted friend in the world.  We have been through everything together, so we are not only best friends - we're war comrades. I can't imagine anyone better to be in the trenches with. She has 7 siblings, and 20 something nieces and nephews. My family is big, and has always been so loving and supportive of me and my mom. I am forever grateful to them for always being a call away. My life has been filled with love, and that's because of my amazing family.

Being diagnosed with CF at 6 weeks old prevented me from knowing any other kind of life. I tried to be a normal kid, and at one point I was so angry because it seemed impossible. In my teenage years I still strived to be normal, but it's now when I'm at the beginning of adulthood that I realize I'm just not cut out for normal. It's not because of my disease, although that's probably the catalyst, normal is just not who I am. I am an artist, a free thinker, an "old soul", a lover of originality and creativity, a someone who refuses to live a dull existence. I've always thought that the best way to live life, is to live it creatively. I'd like to tell you that I'm a very proud owner of the life I'm living. So I must be doing something right.

Everything I have shared with you has taken me a life time to learn, and even now I'm figuring new things out everyday. But the last piece of advice I have to give, the thing I have learned has the most value, is this; LIVE! Go out in the world and live the life you have. Love the life you have. Be the owner of your life. Because it's the most valuable thing you could ever own.

Thank you for reading.