Wednesday, May 9, 2012

Oh, the month of May

It was a year ago this week that the nightmare started of what would become my new reality. It was the Tuesday after the CF walk of 2011 that I came down with a head cold, who knows where it came from and why I had to pick it up but it did and that is how life rolls.

It was the head cold from hell that three weeks later put me in the hospital and, which come June 1st I will likely be blogging about that day as well - it's been an interesting year.

In any case, as of late I have been spending some time on some old internet stomping grounds, I guess you could say, the cystic fibrosis forums. I used to spend a lot of time reading through questions, posting questions, learning about all things related to CF and others who have CF. It's been a long time since I have been on there, I don't think I visited it but once while was on the vent and not since then. But I realized something strange or different - I have a whole different perspective now of what having CF meant/s, and how drastically life is different, and yet in someways the transition was way easier than I would have expected pre transplant.

I guess I didn't realize how much CF lungs are vial, filthy creatures. Not their fault, genetics made them that way and yes they gave me the 34 years I have had - so I don't hate them as much as I see how difficult they made my life. I see videos of other CFers, hear them talk, watch them cough, try to catch there breathe and think, wow, that was me. How did I do that and how difficult it is to watch that, how painful and utterly heartbreaking. I feel such compassion for those who continue to fight this battle daily, those you find themselves in the hospital once again to try to get some sort of comfort and care so they can go back to living a 'regular' life, even though their regular is much different than everyone else's.

It's really little things that make the difference, just having a good nights sleep, or being able to eat a meal and not feel stuffed and breathless. It's walking up stairs without having to drag a plastic tube behind that gives you the only comfort when the stairs feel like trying to reach the mountain peek. Those are things that we just accept and deal with having CF and lungs that degenerate in a fashion that we adjust and don't realize that we are heading down a slippery slope. No one wants to have a transplant, and no one wants to admit that their lungs are failing, because even though these CF lungs are going to give out they somehow make us think that they are giving us a better chance at living a life then having someone else's lungs inside of us because God only knows there is no guarantee, transplant is fickle. But the true reality doesn't hit until the deed is done, transplant is over and it has become your new life.

I have been on this roller coaster, I have had many ups and downs with these lungs and still some days I am caught off guard when my brain processes the fact that I am breathing because someone else once breathed with these lungs inside of me. It is a mental exercise is acceptance and emotion. Whatever time I am given, whatever direction this all goes these last few months have been better months than the last five or more years of my life. I may have some pain, but it is not chronic and daily pulling me down mentally and physically. I may not breath perfectly but I breath the best I have in over 10 years, and I am not breathing through muck. I am enjoying doing things that I can do and not sacrificing myself for doing them.

Daily I feel the strength returning, weekly I find something new and bewildering about this new world I am living in. Monthly I look back to think where I have come and as my brother said, what transpired six months to a year ago seems like a decade ago. How utterly touched and honored that I am still here on this day to walk the earth. Whatever capacity, in however I chose to spend my day I have been given the greatest of gifts. Until your life is nearly snatched from you is it hard to truly grasp how special each and every day is, and how trivial some things in life really are.

This day is always the only day we have, and even though I have my days where I forget this blessing and let the unimportant things in life bother me, we need to realize that it is a special day no matter what we are doing, working or playing. This day will be the best day of our life, everyday has that chance.

I pray for all the CFers out there tonight struggling to breath, fighting another day to beat the big bad beast that is CF. I may no longer fight the nasty lungs but my heart aches for others and prays that one day CF will no longer be the vial creature that it has a tendency to become.

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