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Wednesday, July 11, 2012

The Little Things

Hello World!

Living with Cystic Fibrosis, or any chronic illness really, makes you appreciate the little things more. I know a lot of other people say that but its true. I never really gave it much thought until I was 16/17. When you're young you don't really have  a long term vision of life. Everything is all fun and play, not a lot of responsibility. Well for most kids anyway. It isn't until they hit 15/16/17 that responsibility starts to really creep in and you take notice.

Now that I'm in "end stage Cystic Fibrosis" - which I hate to say or write - there are sooo many really little things I appreciate. Because of where I am in my lung disease I am incredibly dependent on my parents -financially, physically, emotionally. I really never thought THIS would be my life at 26. But it is and I take it all with a grain of salt!

There other day I went grocery shopping - alone! - for the first time since probably February/March. Most people bitch and moan about having to go to the store but I was so excited to do this on my own again. A trip to the grocery store involves making a list - so I'm not wandering too long, packing up the oxygen and figuring out how I'm going to push a shopping cart AND pull an O2 tank. So needless to say it takes a little finagling and some work. Work I'm willing to do and figure out. It took me about an hour and a half to do the whole trip. I was SO exhausted but felt so accomplished after. It was great.

There are lots of things I can't do anymore and hopefully one day - after transplant - I will again. Working is one of them. I'm on Disability so I have a small fixed income. I always TRY - being the key word - to live within those means each month. Thankfully I have my parents to help me out when I can't. In a few months I'll hopefully start paying for my own car insurance. I'm super excited - stupid I know. What a step into adulthood! Leaving my parents plan and starting my own. It will be wonderful. Finally a real step into independence!

So while you all complain about paying your bills I'm excited to have the responsibility to pay mine!

Look out world, I'm growing up!

Breathe Easy

Monday, July 9, 2012

Going Well

Hello World!

Hope everyone, or all my fellow Americans, had a great 4th of July. Mine was nice. Spent it with my parents, Ate some lobster, and comforted Tucker who was terrified of the fireworks. Overall a good holiday.

Made a trip out to Ohio a few weeks ago for routine pretransplant check-up stuff. Everything went well, no changes really. Still just a waiting game. My overall health is good at the moment. I would say I'm on the up side of this roller coaster ride at moment.

Got to see one of my best friends this weekend! It was great. I have 4 close/best friends. 1 lives in Washington DC, 1 lives in CT, 1 lives in Maine, and the other splits her time between here and Boston. So needless to say they are out of town a lot. So it was great to see my friend this weekend. We laughed A LOT. Took stupid pictures, made fun of each other, gossiped, ate junk food, and watched movies. It was perfect!

Hoping to have some news about my Dad soon! I can't wait to share!

Breathe Easy