The Blessing The Curse Summer and Chronic Illness

Living with a chronic illness is both a blessing and a curse. Pain free days are a beam of light from above, those are the days I feel a gentle rapping on my shoulder, the tap is not invasive or jarring but a tap like a “hey you” tap.  Then a symphony quietly builds in my ear, then the rush, like when you witnessed the first concert that made you feel glad to be alive, a pain free day makes your skin feel pink again, a warm brisk burst of oxygen moves up your middle forcing you to smile.  It’s weird, not like that one when you are on new meds and you get that bizarre, worrisome ripple of heat up under your armpit….this time it’s good weird.   When you awake with no pain it feels right.    Something supremely wondrously in charge has whispered to you.   Hey you, “take the day off from pain.”   You practically buckle to your knees……yes, yes I will, I will make my list of top ten things for which I am grateful for.  I won’t put it off again. I will let go of the anger I have towards my pharmacist for making me ration the last of my pills so I must be UNDER rather than over medicated on my summer trip.  I mean….. it’s not that nice Asian man’s fault.  You are not like clockwork on anything lately, least of all checking in to make doc appointments.   You prefer not to be center of attention, you don’t want to admit once every month that you are a sick person, damaged goods, you live trying to shed that realization daily, so whose in a hurry for blood work?  The clincher of course,  you have no refills and leave for your trip tomorrow.  ARGHHHH!!!  And trust me, although he refills those six little orange bottles so frequently for me and knows way too much about me, he, my pharmacist, is not in the business of taking pity on me.  He isn’t allowed to dispense a little pocket sample just cause I emphatically plead my case- yeah, I tried.   What person with a chronic illness excitedly books new doctor appointments in their iPhone a year in advance….live and learn.     I don’t pity myself a moment-I look healthy for the most part, save for those dark shadows under my eyes.   I mean…. Like, everyone has had an occasional transfusion or two right? Or a drug that has made their liver fail….right? And here’s the best part-Those of us who thought we could doctor ourselves are pleasantly trained in asking for help now, that is once you get over having to finally surrender and admit you feel quite betrayed by your body, of which you thought you were in charge of…..yes…your doctor owns you now.   Chin up, you’re not alone, and being sick is one thing, but being sick and alone is entirely another.

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