Friday, May 14, 2010

Reality check #538 - the speaking circuit

Based upon the customer reviews and feedback about my book, it seems that readers appreciate that fact that not only have I lived with lupus for over 9 years, I continue to live with it and deal with it every single day of my life. As I say in my book and have said in my blog, lupus isn't something you conquer...it's something you learn to manage on a daily basis so that you can live well, despite it.


Some days, it's easy...and I hardly give lupus a second thought. Other days - my disease gets a lot more air time. And although it's tough to swallow, on those days when lupus is ever present (either because of a nagging symptom, a medication snafu, or the accommodations that it requires), it reminds me that lupus and I are a work in progress. The reality of the situation is that a chronic illness deserves continued respect, attention, and a little allowance - so that we, the patient, get the respect, attention and allowance WE deserve. So did I have a little rejiggering to do last week as I traveled all over the state of Indiana, speaking and engaging in lupus activities? You bet!

I had to contend with a few swollen joints over the course of the week. Nothing big deal. And nothing that didn't subside within an hour of me taking my prescribed prednisone. But, boy, does it make me think long and hard about future speaking gigs, as my tummy continues to grow and my energy becomes more important to conserve.

I also did a lot of car traveling during the week - fitting in visits with many special people throughout the state. Family, friends, even other lupites who wanted to connect. And I loved every minute of it. But truth is, my joints didn't. Again - nothing to write home about (although I guess I AM writing about it, so scratch that), but at least nothing that lasted more than a morning. But it makes me realize that again, life with lupus is not a free-for-all. I have to gauge my activities, I have to prioritize my activities, I have to choose well day after day after day.

In my next post, I'll talk a little bit more about this concept of choosing well. I've been recently convinced that the title of the first chapter in my book could have been "Choose One" just as easily as it was named "Choose Well." Stay tuned for an explanation!

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