It's time for another update. I'd love to say that things are looking up. Ya know, it's positive and good things are on the horizon. Truth is, things are unclear, heavy and have been coming to me bearing my good old friend anxiety. There have been some wonderfully good things recently too though! I took a couple trips this summer and got to check off many items on my bucket list. In many ways it has been a very happy, fulfilling summer. I sat in the Chicago Cubs dugout, tried new, exotic and ethnic foods, added another stamp to my passport and even enjoyed my first experience on urban/metro transportation. I've seen some dreams of mine come true and I'm excited and grateful for each one. Happy, thankful tears have followed each new experience and my life and relationships are richer and fuller having shared them.
What in the world could overshadow such blessings? Unfortunately, I've found that interstitial lung disease can. No matter how hard I have fought to push the thoughts and the ideas out of my mind, the reality of what is happening to me and what I'm facing, it seems they always linger. Like a big ugly wart on an otherwise lovely hand. It's always there and there is no escape. Literally every step of every day is affected by my inablility to breathe well.
It's funny because I have, at different times in my life, found myself inspired by people in desperate or bleak circumstances. Those people who always seem to be positive and have this message for the world that no matter your struggle, life is good. I find myself wishing I could manufacture that attitude or outlook. I'd love to be the kind of person who could be 32 years old, dying and still telling everyone how wonderful things are. But I just can't do that. There is nothing extraordinary about me. I'm just a regular person who has scleroderma and whose lungs are slowly becoming rocks (almost literally). So I need others to understand that yes, wonderful blessings still come in my life. And yes, I am indeed thankful for them. But more than that, I feel like life is just hard. For real. THIS. SHIT. IS HARD.
Frankly, I have become such a complainer and so intolerant of things that I feel are stupid or a waste of good time and energy. I'm not good at faking any of it. I try but that seems to take energy I don't care to spend. On the flip side, I definitely think kindness is important and I do make efforts to be kind but man, the trivial things just get to me.
In about a week I'll start a process of pre-qualifying for a double lung transplant. (I can't believe I actually just wrote that sentence.) It's crazy I'm here. Already. There's a lot riding on these first few tests. Actually, my life is riding on these first few tests. Basically they need to know if my esophagus is working well enough not to destroy new lungs were I to get a transplant. The long and the short of it is that if my esophagus isn't functioning properly, I'm immediately eliminated from the possibility of a transplant. If it seems to be working ok, then I can continue on with more testing and searching for a hospital with a program that will accept me. And yes, we are this point. My lung function numbers have steadily decreased since my diagnosis and so much so over the past year that my oxygen use has doubled and my oxygen saturation has dropped, at times into the 60s without supplemental oxygen. (If you're not sure what that means, a quick google search will clear it up.)
So all this to say, sorry if I've been a jerkface to you at any point but the truth is, I don't appreciate this whole situation much and it's not really bringing me a lot of warm fuzzies. I'm doing the best I can with what I have but I admit a lot of times the best I can is just a lot of crabbiness. Maybe some epiphany will come that changes my attitude and brings some acceptance and understanding but for now, know that in my heart I'm not really a jerk I'm just a little pissed off at life. So, uh sorry I guess.