Let me start out by saying (unlike Carley Simon's song....which I think really is....) this post is not about any of you, it is most certainly about me.
I have to say that the question in my subject line drives me up a fucking wall. To explain why such an innocuous comment would drive me to profanity (like it takes much) I need to give some background information about me. First of all I hate to lie and really don't like those who do. Second I strive in life to be happy and make others happy. If you put these two edicts of mine together and couple them with my subject line they are unfortunately at odds.
See the real answer is I'm not doing well, not at all and I know my friends and family wish I were. The truth is I don't even want to wake up in the morning, not because I don't want to live but because its really hard to do so. The truth is hard to hear and I don't like having to tell people so I say as good as can be expected, or making due...getting by....etc..
See the truth is....right now the best moment of my day is the brief seconds right after waking up; just before my first attempt to breath in, when my breath is still shallow and I have not yet moved. In that moment there is no coughing, there is no muscle ache, no pressure and pain in my head. In that moment all is fine and I am good, and I try to hold onto that moment for as long as I can each day. Because the truth is it's all down hill from there. Once I start to move the clearing coughs begin followed by the deeper coughs, the muscle starts to ache, the head pressure begins, the gurgle and rattle of my chest begins its haunting melody. These days I can't even get up in the night to go to the bathroom without it being a major deal with the coughing and gasping. Hell I don't even like to roll over in bed because the coughing starts and it will wake up poor Denise who is just trying to get some sleep before work. And have I mentioned I have a damn O2 tube hanging out of my nose all the time that keeps getting caught on things!
But the question pisses me off the most because I hate that my main characteristic right now has to do with health or more precisely my lungs and CF. I have accomplished so much in both in my personal and professional lives that I am proud of despite or maybe in spite of my CF. Pretty much everything and anything I have ever set my mind to I have seen through. Over the years I have developed a breadth of knowledge in sports, exercise, psychology, nutrition, bodybuilding, design, engineering, manufacturing, computing, continuous improvement, government, health care, the list goes on and on (well not too much farther really...) but right now none of that matters. Now when people call we are more likely to talk about my health than to discuss other issues and its obviously on my mind more than anything else anyway. It sucks to let people know that this disease is sucking all the real joy out of my life, that my body is really failing me now.
So I'm sure it's no big surprise to anyone that I have unfortunately been becoming more and more withdrawn, and I know it's not good. I know People showing their concern for me is a good thing and a testament to the life I have led. So I'm putting this out there so you all understand a little more of what's going on in my mind and to explain why I may not have answered the phone or called you back right away and to say I'm going to try and do better.
We are one week away from the transplant evaluation now and it will be great to get that behind us.....
See I told you it was about me....LOL