Friday, March 30, 2012

Muscles and Medicare


As many of you know, I have been bed bound for 16 months now.  Initially, I was confined to bed with severe leg ulcers but, after 2 months, the muscles in my shoulder and hip atrophied…which then prevented me from getting up thereafter.  Since then, my doctor and I have repeatedly tried to get (soft tissue) massage therapy and mild PT to slow down ensuing debilitation. Despite trying different nursing agencies, the answer remained the same; Medicare will not pay for it unless it will enable me to walk.  That is their guideline; their “measurable goal”, and they need assurance of that outcome before covering the treatment/service.  As the patient, my objective/“measurable goal” is to maintain movement in bed and slow down further debilitation.

Please understand that for 26 years I pushed myself to keep going and retain mobility through pain and limitations.  It stands to reason I would continue that pursuit, albeit a lesser degree of mobility.  I know the ramifications of immobility and wanted to circumvent those ramifications.  Yet, without Medicare coverage or funds of my own, my hands were tied and the obvious has happened.  I am now experiencing widespread atrophy of my muscles and tissue.  I see my body wasting away before my very eyes.  I don’t know how to express my dismay at this outcome or at the flaws in the system.  Though I could well be called a crusader, I am not a revolutionary or activist.  I am not able to speak before the Senate.  I am, though, able to to raise awareness by telling my story in conjunction with everyone else’s story and hope that eventually change will come.

Friday, March 16, 2012

A Battle


To those of you who read this blog, I hope today’s post will speak to you somehow; that you could relate to it and feel less alone or less discouraged.    This post is not about anything profound, just perspective of life with chronic illness.  It’s not a journal or a how-to.  Neither is it a solution.  It’s just a personal study of where I am in the  RSD marathon.  
For those who have read my last two posts, you know the current challenge is depression.  What, for me, used to be vent, re-focus and keep busy….suddenly became a fight that had me “down for the count”.  Because my depression came from the loss of meds I had been on and because I don’t do well with meds, in general, I don’t want to experiment with new ones.  Being tenacious, I would rather continue my attempts at re-acclimating myself to the former drugs; little by little, til I can again tolerate them…or maybe, God forbid, go without.  For now, I have learned that this is a battle, and I have discovered some weapons of warfare.  I listen to music more now, I watch funnier movies, I’ve re-connected with poetry, I now belong to a support group and I pray even more than before.  In addition to all that, I cut my hair and resumed wearing lipstick…lol.  These things, no matter how small or silly, are helping.  I may not be where I want to be but I’m moving forward and that’s what counts.  I know that some people have major depression that requires medicine and more, and my heart goes out to you.  But the point I’m making is that this IS a battle and we need to be armed.

Love,

Jane