January 1, 2009 at 8:28 pm

Thanks for your comments to us, Julie. I have been pondering a lot how to make life work despite all this. I, too, have been through a lot before, but I have never had as much trouble making a way through it as now. It is not the stiffness or discomfort or strange gait, I do not think, but I hate the lack of reserves and lack of energy to do what I need/want to do. I am very angry with this illness and I do not like myself with neuropathy. I hate that the neurologists keep debating what it is I have and that I am just waiting and watching my body slowly worsen. So much of my life is defined by my ability to work and to make a difference in the world and I feel like I am inadequate now. I also used to anticipate the new year as a step into the next year and a way to think and reprioritize. This year, I feel dread now as this seems more just another time for further loss to come. It feels like I have aged 50-60 years in past two. I try to be positive and to redirect, but I am just so angry about all the changes in life and all the uncertainties. I ask this seriously–how does one live and work with this illness and with the uncertainty that it gives to life? “wishing for hope”