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Saylorsburg , PA, United States
42 year old, CF - Received double lung transplant on March 6, 2013. Received single lung transplant on March 1, 2017

Thursday, December 21, 2017

Ramblings of Fortyness

So I haven't exactly followed my goal of posting once a week, oh well to err is human, right?  

This blog post is going to be slightly different, there is no story line, it is my thoughts, my stream of consciousness, my ramblings of a madwoman if you will...

Anyhoo as all of you probably know I turned 40 on Monday, I am still in a bit of shock, I think.  On one hand it's a bit depressing but on the other I should have technically been dead in 2013 so I'm trying like hell to be grateful.  I did have one of the best birthdays of my life, I cut and colored my hair drastically and I love it, it's dark and I feel like one of my childhood idols, Snow White.  Had an amazing dinner at Two Rivers Brewing Company on Saturday with my oldest friends in the world, my brother and his girlfriend and of course my heart Tommy.  On my actual birthday I drove up to see my mom as I was in a funk and felt much better after our visit even though it was short.  Tommy and I went to the movies that night and saw Daddy's Home 2 which was pretty decent and got me in a happy and joyful mood for the holidays and yesterday my sister and niece came to see me and we did a birthday lunch and pedicures, it was fabulous.  Tommy and I are leaving on Friday for North and South Carolina which is fucking sweet!!  I believe spending the holidays with his family will cure the darkness I've been feeling lately.  

Christmas time brings up a lot for me, the older I get and the more time goes on the people I love the most seem to vanish and disappear.  I had a breakdown the other night thinking about my grandma, it all started with Grands rolls believe it or not.  I heated one up and put butter on it and all I could think of was all of the family holiday dinners we had at my grandparent's house wayyyy back in the day when I was a different person and how she used to always serve Grands.  The meltdown was insane, I cried so hard I could barely breath and then I started to think of DJ and how he has been gone for almost 5 months already, the pain was so real and intense I think if I stabbed myself in the chest it would've hurt less.  I don't know maybe I just needed a good cry.  The crying was so cathartic I felt all of the pain as if it was for the first time again.  Like I said maybe it was a good thing, at this point I can't tell the difference.  

Is pain a good thing?  It fucking SUCKS when you are feeling it but I also believe if there was no pain you would not appreciate the good times or the love that can be completely overwhelming and make the pain worth it.  

It's hard for me to fathom that I have had my new lung for almost 10 months.  After my first transplant in 2013 (double lung) within a few months my lung function was nearly 100%, I was never short of breath and I never even though about breathing once I recovered.  I had energy for days and the fear of dying was gone and felt like a bad dream.  This recent milestone birthday of mine has made me realize some new things that I haven't thought of before, maybe it was me protecting myself, wrapping me in some fake and phony cocoon, my subconscious mind doing a number on me as if it was a legendary actor who has won many awards. Someone who is so good that they can't distinguish themselves from the roles they play to who they really are.  I get it, I am it.  

I've come to the realization that I will never again feel that good and goddamnit it's fucking hard, nearly impossible for me to wrap my little head around it.  Currently my lung function fluctuates around 60%, several months ago one of my transplant doctors told me that 60% was most likely as good as it was going to get because this time around I was only able to get a single lung transplant.  I thought to myself in my bad ass brain that once again I would beat the odds and prove them wrong and make it to 100% again, I mean after cheating death twice one tends to feel invincible.  It's just beginning to sink it that most likely this is it, I do tire out quickly and there are times I feel short of breath and panic, I use my inhalers almost on a regular basis and for the first time since I was nearly inside death's embrace I know that I am not going to live to a ripe old age.  I'll be lucky if I live to see my 50's.  I should be thankful, I beat death twice so far, can I beat him again?  I'd like to think so but the reality of the situation is most likely not.  The chances of a third transplant are slim and honestly I don't want to do it over again, the second time put me through the most emotional and physical challenges of my life.  I did not think I was going to live and I had made peace with it, I was actually starting to look forward to my version of heaven even though I'm not even sure if there is a god.  Sure I pray to him from time to time but does he actually exist or am I just rattling off my wants and needs to the big empty?  

Sorry if this has gotten depressing, I need to get it out.  

For the remainder of the year I am going to do my best to put all of this negativity away.  I spent the day wrapping Christmas presents and really forget about all of it, my mood was great and my spirits higher than they've been in a while.  Is that God or is it me?  Maybe a combination of both.  Maybe just me. Definitely partly the Universe.  You get what you give and what you put out, that I truly believe and because of these beliefs I NEED to be positive as I've been in the past.

How else can I expect another miracle?  I just know it's out there, waiting for me

And I'm patiently waiting for it...









1 comment:

  1. Beautifully written..... You are, in CF years, a living miracle! I personally feel blessed to know you. I will miss you when you're no longer able to fight for breath and you're called away. Don't be sad or afraid for you will ALWAYS be here in our hearts and memories. I read somewhere that when life's journey takes you from "here", it's like when a ship leaves port. People wish you bon voyage, they wave, they cry and miss you,but when that same ship reaches the other shore, there are people waving, smiling and welcoming you with open arms! You WILL be alright, you WILL have a miracle!

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