I LIVED.

                                                                   "Hoping you take that jump

But don't fear the fall

Hope when the water rises

You built a wall

Hoping the crowd screams out

Screaming your name

Hope if everybody runs

You choose to stay

Hope that you fall in love

And it hurts so bad

The only way you can know

Is give it all you have

And I hope that you don't suffer

But take the pain

Hope when the moment comes you say

I, I did it all

I, I did it all

I owned every second

That this world could give

I saw so many places

The things that I did

With every broken bone

I swear I lived"

In my lifetime, one thing I never want to do is look back and regret not "living" in the moment, for the moment and for the future.  This song encompasses many things.  It's music video actually features a Cystic Fibrosis patient (https://www.youtube.com/watch?v=z0rxydSolwU) I think many people with life threatening, chronic illnesses probably have similar feelings..or anyone who's really been challenged in life for that matter.  My "life expectancy" is not that of an average Joe, to put it bluntly.  Sure the average Joe could fall over from a heart attack at 50 years old, the average Joe could be in car accident at 20 years old.  But the average Joe ( who is not dealing with a lung function that is on the decline, with not much room to decline) would have what you might consider a normal life expectancy.  Of course, I want to defy the odds and I plan to.  Heck, I already have in my mind.  I was told 12 years ago that I would need a lung transplant 2 years ago, by the time I turned 30.  Screw you doc. I'm still kicking.  

I've just about finished a round of IV meds.  Yes, I feel so much better than before I started, but things are different now, than say 5 years ago.  Despite hardcore antibiotics, IV and oral steroids, rest, no work, much help from family and friends .... my body still hurts. It's fighting just to be.  I'm exhausted.  This disease is exhausting, that's one of the best descriptive words I can come up with to describe what it's like to deal with this daily.  Not only is it exhausting to just breathe and get through the day, but is a full time job keeping up with my medicine, my treatments, medical bills, doctor appointments ... I feel like I am fighting myself.  My mind wants to do normal things, be a normal 32 year old, but my body won't let me.  That is the tough and possibly the worst part.

The best part of all of this is that I realize how precious life is.  I appreciate those days/moments when I can take my dogs for a walk around the block.  I appreciate being able to go grocery shopping, being able to meet a friend for coffee or a glass of wine ... those "normal" things.  My perspective on life is mine, and it is something that cannot be taken away from me ... not this disease, not one person, nothing can change the thing that keeps me so positive despite, let's call it like it is, a shit show for a situation.  I am able to adapt to ever changing "norms".  Lots of people can't handle change.  I embrace it.  I value being able to adapt, I have to.  If my plan for today has to change b/c I am having a particularly tough day, so be it.  If I am hurting too much to go to the gym, okay fine.  If I can't make that trip we've been planning so long for, well crap, but it is what it is ... life goes on.  I can thank PCD for my ability to cope with change, appreciate life and value those things that the average person doesn't.  Life is much brighter, more enjoyable and a lot more fun when the smallest things bring the greatest pleasure.  I wouldn't trade that for anything. 

This week will be an interesting one.  I am due to finish IV's tomorrow (Monday). I have a transplant follow up appointment on Wednesday and we are traveling on Thursday.  I ask that whoever reads this, to send positive thoughts and vibes for me and my family for this Wednesday.  I already have anxiety about what the docs will say, where my numbers will be and what is to come.  One thing is for sure though, I will take it for what it is and walk away screaming "I Lived", b/c that is all one really can do.