I'm lying on the sofa while my mother-in-law is cleaning out the refrigerator, cutting up the fruit she brought, along with the rest of my grocery list. Wow, I really have it made. Except, no bon bons, no soap operas. Nausea, swollen painful joints and the kind of fatigue that kicks you flat.
September 13 - 19th is National Chronic Invisible Illness Week. I wrote a post last year and now, here it is again. The biggest difference is that, along with the disability came Medicare. A donut hole?? What that means is that if I want the same medications that allowed me a better quality of life than this - I have to cough up several thousand dollars every year. Hopefully, my empathetic, fabulously wonderful rheumatologist, a word unrecognized by my spell check, will succeed in procuring a supply from the drug companies that, until their patents expire (my theory, opinion, not fact) gouge $1750 for the two injections I need every month. Forget the very costly eye drops that prevent the blurred vision. Well, sometimes.
I am lucky though. I know my illness - it's name is Psoriatic Arthritis with a side of Sjorgren's Syndrome; all part of the vast world of auto-immune disorders. There are so many out there who don't get diagnosed, go for years in pain, confusion, isolation, in other words, a silent hell. Those are the people I am speaking for; I know why I wake up so many mornings dreading the exit from bed after a not-quite deep enough sleep, to find that I feel like one does when the flu attacks. Minus the fever.
Just a few years ago, I was on the merry-go-round like most everyone around me, though it had begun to spin a bit too fast. Lean, running two businesses and competing in horse shows, life was at full tilt. Only then I got tossed, and I sat on the ground watching everyone else go by, oblivious, laughing or crying, living in the moment or dreaming. And doing.
We are all raised to be human doings rather than beings. Our net worth, accomplishments, trophies, medals, private success, whatever title we carry, real estate we own, car we drive, we are known for all that exists outside of reality, in other words, outside of ourselves. Outside of being. Human being. I matter, I am important just because I'm me. Well, that's what I try to focus on during the hours I lose to this chronic, yet not fatal, illness, that pretty much rules my existence. Those days when I look back at photos of me doing.
Don't get me wrong, I do art, but in reality, my reality, art is in me, my being. As is writing, which chose me early in life. And art is my therapy, my saving grace and for that I am most grateful. It brings to mind the countless chronically ill who have far worse battles than I, fewer opportunities to channel their grief and pain into a mixed media piece. So, if you're still reading, click the button to the right.
Oh, and thank you Janet. I hope nothing too gross was growing on the unidentifiable mess you found in my fridge. I am eternally thankful for your help and support. And, while I'm in a moment of gratitude I'd like to say that having family that understands chronic illness, like my mother and father do, is a blessing, albeit very much in disguise. I am blessed with friends, artists and bloggers, who have one or another form of illness. Right Karin?
If you are one of them, please leave me a post! Thanks from the ground, watching the merry - or not - go round.
note: these photos were before ICI... when I was a doing:)