My lungs have started making their expiratory squeek, AGAIN, less than one week
after tapering down to only 40mg of prednisone.
For the first time in a
while, I almost let the fear paralyze me when I was running amok, enjoying life, and my lungs began to squeek like a rickety set of useless rodent infested stairs.
That's how I feel about my lungs. They're old, frail rickety and utterly useless if not meticulously watched.
I'm scared regarding what could happen in the future, but I'm not scared now. Right now I can breathe. I have energy. The world is mine to conquer again and I'm going to conquer it. There is nothing to fear because there is nothing to stand in my way right now.
That does not mean that I'm not aware.
It is plan for the worst, expect the best.
I always did wonder how people with diseases such as cystic fibrosis went through life knowing their time would likely be cut short, and why they did what they did.
I was always fascinated to see that they went to college and started careers. Most people continue to live life with disease on the side. This way, maybe one day they will die, but it won't have been without living first.
I like that. It's allowed me to make plans again.
For so long I wouldn't make future plans because the disappointment of canceling them was too much pain. Not anymore.
I'm trying to run about life and enjoy every moment I have with the anticipation that I will again become as sick as I was.
It's a blessing that I can accept the inevitability of my disability and prepare accordingly. I now focus on projects that I can hopefully sustain while I'm sick.
Every time I enter treatment or become acutely ill I lose whatever project or goal I had set for myself. I scramble to find someone else to hold together the pieces in my abscence. It's a devastating loss that happens alongside the disability.
I don't want that to happen again. I'm trying to create projects that will sustain themselves beyond me.
This has always been the goal, but I've never found an avenue to achieve it. I didn't know who to work with or where to go.
I'm finally making some progress.
I'm meeting today with some members of Sullivan County's American Cancer Society. They specifically work with Sharon's Hometown Fighter's and The Relay for Life.
This area has a great group of involved volunteers looking to ease the burden of cancer. I can't wait to brainstorm with them fundraising ideas, as well as pitch some of my own that they could maintain in the future.