The ICI Experience:

For background on this poem and its author visit the website below. This is What I Want To Be (dedicated to sufferers of Fibromyalgia) I live my life from days, to months, to years I live my life in sorrow, in fear, in tears For once in my life, this is what I want to be Forever glad, forever jovial, forever joyous, forever happy I have so many creative ideas in my heart and mind My weakness within stalls my soul and the world leaves me behind I have so many things that I want to do; want to say But, the beast within holds my spirit captive; I can’t get away I tire so easily; the fatigue is relentless I can’t seem to do the dishes, sweep the floor or even get dressed Because my heart is in pain; my body is in pain too Doc says, “There is nothing wrong.” Are you sure this is true? Take this pain away-tear it out from within me For it keeps me down and low, I can’t be what I want to be I want to be able to finish things that I start I want to have supportive friends that love me from the...

Hello All, I know I've promised to follow up on all kinds of things here in my trusty blog. And I intend to do so. Eventually. But I have just been invited to host an online seminar (webinar?) during the National Invisible Chronic Illness Awareness Week Conference. And guess what subject they want me to pontificate upon? "Blogging About Your Illness"!!! Isn't that just perfect? I'm going to take this as a sign that it's time to get back to the point of this blog (which is the invisible chronic illness experience, in case you've forgotten with all of my fun wanderings lately). Information about scheduling for the Conference will be posted here as it becomes available. Woo Hoo!

Let's face it... chronic illness can have its humorous moments if we look for them. You know you have a chronic illness when... * You understand all the medical terminology discussed on the T.V. show Grey's Anatomy. * When you hear the term "Club Med" you automatically think of the hospital. * You ask your child to open the "child-proof" bottles of medicine because your hands are too sore. * Your medical records have to be transported on a cart. * To entertain people at parties you recite the side effects of medications as if you are the voice over on a commercial. * Your favorite Oprah program is when Dr. Oz is on. * To get rid of boredom on road trips, your whole family can go through the alphabet and name a drug that starts with each letter of the alphabet. * When you're unable to sleep because of pain, you watch "The Jerry Springer Show" and feel like you actually have a life. * Your spelling has improved...

I named this blog The Invisible Chronic Illness Experience at first. Then I looked up invisible in the thesaurus and I didn't like what I saw. One of the three major adjectives is "imaginary". As in nonexistent, impalpable, intangible, shadowy, and insubstantial. Definitely not the image we want to project. So then the best words I could come up with were unseen or concealed. "Concealed" is already being used (See www.writefaceforward.com or the book "Just Fine".) Unseen is simple and simple is beautiful. But I've already set up a website on "theiciexperience", In addition to this blog, so I'm not sure what I'm going to do. I guess for now I'm going to do nothing. The name of the website can't be changed. And I definitely feel they must match. So I'll wait and see what happens.