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.
