Thursday, September 16, 2010
the invisibleness of invisibility
Here it is Friday and my goal was to post every other day during the National Invisible Illness Week. So much to say... about what it causes my family, especially my husband to endure, the guilt that flickers in my brain at the drop of a piece of laundry - that I can't wash at the moment, the lack of social life... If not for art and writing, I think I would be, well, a mess.
I did have a few hours this past week, after having been in a major flare for nearly two months, of self pity. Or, is it grief? When something of value ends, be it a life, dream, career, there is a natural cycle of denial, anger, bargaining, depression, acceptance (Kubler-Ross model). But when it doesn't end once but loss is felt over and over again? Though not in order, I do reruns now and again.
It is autumn, a season I love but one that, second only to spring, triggers more flares with each dip of the barometric roller coaster. And, since Medicare doesn't pay for my meds, to the tune of $4000 per month I'm relying on prednisone - woohoo. The good news is that I've begun consulting a very wise and educated clinical herbalist - Andrew Bentley. He has a wealth of knowledge and experience; I've begun taking pure plant extracts, the natural version with the anti-inflammatory properties I so desperately need. They will take longer to be fully effective, but side effects like lymphoma, no more red blood cells, etc. are not an issue.
So, in spite of spending too much time stationary, I am lucky! I have a good friend with Lyme's Disease and sides of fibromyalgia, anxiety and depression. She is a single mother and her daughter has also been whacked with the ICI stick. Doctors in Kentucky, or most of the ones I know, don't believe there is Lyme's in Kentucky, though I had it in 2004, before the onset of PsA. Like many other invisible illness, Lyme's often hides from traditional tests.
For every person like me, who knows exactly what I have and which battles to fight, there are dozens who are suffering with no answers. I have a wonderful book, Sick and Tired of Feeling Sick and Tired (Living with Invisible Chronic Illness) that is very validating and I highly recommend it to those with illness - or their families. Statistics show that half the population suffers from a form of chronic mental and physical illness, mostly invisible, which might be one reason there is a new edition of a book that was first published in 1994 and after ten printings has been updated with a host of invaluable info for, well, 1 of every 2 people:)