It has been a hectic few weeks around here....between work travel and family events, etc., things have just been a little crazy. I'm finding adjusting to my new state of health a little challenging. I'm having a lot of trouble accepting my life as it is now. I spend so much of my time tired. It is a balancing act trying to keep up the happy face and facade for work and people at home. I'm struggling with some inner demons. I don't want my kids to look back on their childhood and remember mom being sick all the time. I don't want them trying to take care of me and read when I'm having a tough day and when I'm not. So, I try to hide it. I try to push on and keep up with all the things I've always done. It sucks....royally. I absolutely hate having to ask people to do things for me....like open jars. My hands aren't my hands any longer. They have a mind of their own. It frustrates me that there isn't more information out there or better treatment strategies. What have we been doing in our healthcare research system that some of these same illnesses have been here for years and we are no closer to effective treatments or cures for some that have spent decades on the health radar. Not every disease has a Lance Armstrong or Melissa Ethridge to make it the disease of the day. We need to discuss equity in health research. Is it just a fantasy of mine that people will do the right thing simply because it is right - and in this case the people are health research companies. There are so many diseases that don't have adequate research dollars or adequate publicity and I could go on and on but, what good does that do me right now? I was asked recently what I was going to do with all this knowledge I have from this experience....how would I make the world a better place with it? Right now, I don't even feel like I can get me through it let alone be a champion for the cause...so to speak. So, I will quietly go back to my corner and have a bad day....
missing the world I knew
Pandora
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