rakiethebird

I am new to this blog as of today.  For someone who loves words and writing, I have never been a part of one of these.  I have suffered with CFS/FMS for most of my adult life, but only recently diagnosed 4 years ago.  I'd just read Michelle Obama's post before reading yours and I was happy to see someone  approach her with the subject close to my heart.  As my condition spirals out of control, my hopes are quickly fading.  I am a 55year old divorced woman, with an 18year old who has just graduated high school.  A time which should be exciting for both of us is more terrifying than this disease itself.  I was forced to quit working in 2004 and have managed so far off of savings and credit cards. I have lost track of how many times I have been turned down for disability.  It brought me to tears reading your blog and the ideation of extreme poverty, lack of health insurance and yes, even homelessness frightens me more than the notion of dying.  Even if and when I qualify for SSI I will only receive Supplemental Social Security because after adopting my daughter at 8mos, I prayed to be in a position to be available to her during her school years (be careful what you pray for or at least be specific :). Over the years I was afforded the opportunity to work part-time which leaves me with not enough credits to qualify for full benefits.  While I look forward to receving SSI, it also frightens me to think how I will manage on such a small penance.  As if there isn't enough shame in trying to qualify for some type of local  Health Care, I am down to begging for Medications from Drug Companies.  I fear becoming a cripple because I can't afford to get Physical Therapy.  Slippling through the Cracks?!  I've fallen into the deepest whole I've spent most of my life trying to avoid.  I have always suffered with Chronic Illness but I have also tried to take very good care of myself.  I chided myself on being a Yogi practitioner and surrounding myself with a Galazy of Souls whose thoughts and work bring light to my life. I try to remain well-informed and commited to taking positive action but problems you thought you'd managed seem to keep resurfacing.  There is so much more to me than this disease and complaining about it but I fear my chance will never come.

Yes, I agree that the dialogue about health care for all must include those of us who slip through the cracks. We also cannot count on the government to find a cure but what we could benefit from are more not-for-profit organizations to act as a vehicle that supports, educates and empowers people with chronic illnesses on their journey to wellness.  Something I feel passionately about and dropped the ball on creating because of my illness.  I am sliding off of my Soapbox for now.  Thanks for this opportunity to Share.

charley