I recently posted some pictures on Facebook of our recent trips to Vegas and then Tennessee. I admit, I hesitated. There I was by The Golden Nugget pool, prancing around in a teeny, tiny bikini having beaucoup de fun! And Tennessee found me hugging and kissing on my godson, and teaching him the subtleties of the "jumping shot". I mulled. I wondered if anyone would comment the way I suspected they might. And then yesterday it happened. One of my Danish cousins remarked on how it was too bad my kidney function is now lower than 15%, because, well, I looked so good!
SIGH.
I suspected this might happen. My insightful husband voiced his concern about this months ago. Ever protective of me, he worried that if I looked too good, people might not take me seriously.
BIGGER SIGH.
But I believe it's necessary to trust your relationships, and I believe that those whom truly love me understand every aspect of my situation. For those that don't, I have two words for you...
And so, my dilemma. Am I to hide away from the world, no pictures, no socializing, no traveling, because folk might think I LOOK TOO GOOD?
No way, no how, baby.
For those of you not chronically ill, let me share a secret with you. You have good days and you have bad days. And as the bad days exponentially increase, your desire to cherish the good days does as well. When my eyes open in the morning to one of those, I don't quite jump out of bed but, I dress up, have fun and be as active as I can.
What no-one knows is that I slept 16 hours the first night in Tennessee. I had insomnia 3 times that kept me up until 5:30 am in the morning. And on the last day, I caught an infection from my friends' 1 year-old that I am now on antibiotics for. But, why would I post pictures of all that? I don't want to remember any of it.
I realize my good days are quickly disappearing. Since returning, I have been bed-ridden with conjunctivitis, fever, cough, congestion, and my blood pressure is high, high, high. The worst way to destroy the kidney is high blood pressure. My latest creatinine was 3.3, up from 2.8. I am now only 0.2 away from being placed on the national donor registry.
It hurts my heart to embrace life so completely, and then suddenly be placed on hold, in bed, shuttling back and forth to Cedars. It's a mind trip to be certain. I resent that the majority of my energy has to be focused on this, but I'm trying to be grateful. And one way I can do this is by celebrating. Who knows how many more trips Kevin and I can take before all of this is said and done?
Whatever that means.
And so, I'll be snapping away. Those are the stories I want to remember.
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