I know that this isn't about Cushing's but I feel that my kidney cancer "counts" as a chronic disease.
The beginning recap is here: http://cushingshelp.blogspot.com/2009/05/third-anniversary-of-my-kidney-cancer.html
So, here we are 3 years later...
I find it amazing in a way. The time seems to feel like more than 3 years. Yet, had I been told I had 3 years to live back then, I would have seemed like a short time. Amazing, the tricks that time can play.
I wish I could say that I feel wonderful now but I can't. My energy levels are still so low and my temporary part-time job isn't helping.
Because the one adrenal gland I have isn't working and the other is gone, I'm still taking cortisol, although much less than my endo wants me to take. If I take more, I start gaining weight again.
I'm feeling almost Cushie - when I'm home I'm sleeping but sometimes I's awake during the night, too.
I'm also eating more than normal, I think. Not meals, but snacks, junky stuff.
Trisha Torrey wrote in her blog about Patient Empowerment a post titled An Ethical Conundrum - Should I Share This Information? One of her questions was "How many patients, when given the choice between quality of life vs quantity of life, would choose quality anyway?"
Part of my response was "I want as much information as possible about my diseases and I want to be able to decide what do with that information...
I would much rather have a better quality of life than a longer one."
And it's true for me, today. What is the point of hanging around for 20 or so more years if they're just spent sleeping?
True, I'm not in pain or anything but shouldn't there be more? Am I just here to help other Cushing's patients? I think I have enough started that future folks can help themselves.
I often see studies and clinical trials for Cushies and various drug options. And the cut-off date is always younger than I am. Does this mean that possible future treatments wouldn't work for me? Am I now too old to deserve a better quality of life? What's the deal with that?
I know there are no answers to all this. Maybe in my lifetime someone will come up with some answers to all this and I'll be out doing stuff. I sure hope so!
But now it's time for a nap...