I promise...

On my last hospital admission a few weeks ago the floor doctor told me that I needed to quit making plans of traveling because my health wasn’t stable enough for it. I was told that all plans needed to be put on hold until I had a lung transplant and I was healthier. For a reasonably healthy person this is probably reasonable advice, but for someone in my position it’s detrimental. The reality of having a chronic progressive disease like Cystic Fibrosis is that I have no guarantee of being healthier in the future; in fact I am guaranteed just the opposite.  

I thought long and hard while I was in the hospital about how my life would be if I canceled all my travel plans, and quit my job and stayed home full time. There are a lot of things to consider when you are in this position because decisions like this don’t affect just you, but also everyone around you. I lay in bed and I seriously considered what the doctor had said, but the more I thought about it the more depressed I became. What is life without the things you enjoy? If I could live a hundred more years by doing nothing was it really worth it? I couldn’t justify giving up my life, especially for a healthier future that may never happen. I called and spoke to my primary CF physician about it and he told me he wouldn’t tell me what to do but he highly advised against my travel plans. He also took the opportunity to remind me that my health is a full time job by itself.

I go in on the 30^th for my first clinical checkup in months, I’ve been admitted more times this year than I have actually been in the clinic. I am hopeful that my lung function and weight has increased, but if neither of those things have happened I may have to face the consequences of continuing on with a lung transplant evaluation. I’ve decided that if I have come to a point where my years are numbered that I will not spend it biding my time and waiting, I am going to make the commitment to live my life in the loudest most joyous ways that I can. I refuse to sacrifice happiness for time. This blog will be my journal through what could be the rest of my life.

Eventually we all have to handle the idea of our own mortality, this is the promise I am making to myself.

I promise that today I will live a life I have never lived before, I will go on an adventure and explore places and ideas I have never before. This time I have will be used to make memories for a time when memories will be all that is left of me. 

A spoonful of sugar

People always say do things while you can because life is short, it's a statement i've heard many times and one I believe in. I've always faced life with the best reality I can, but also the most optimism, part of me never truly believed that a day would come where I would have to stop doing things because my life was coming to an end.
This past year my Cystic Fibrosis has been progressing at an alarming rate. I am teetering back and forth between the point of being evaluated for a lung transplant or being to healthy. I am reaching a point in my life where the goals I set for my future seem more like distant dreams that need to be put on hold in the hopes of my health improving.
Even though I was born with Cystic Fibrosis and have dealt with it every day of my life it is still difficult to understand and comprehend that there are things that I cannot do, especially now that i'm getting to a point where the list seems to be growing faster and faster.

I am creating this blog to help share my story, and to help inspire myself to keep finding new ways to keep the things I love most in my life even though I may not be able to to do them or be near them like I once was.

My health may be starting to fail, but I am still living I just have to start finding another way to do it.