Being told one has any kind of illness is not easy. this is hard enough. being told you have a rare disease and that there is no cure or anything to slow the process.... Is devastating. I am one of those people who has always been able to find a way through things. I had a very demanding job where most of the time I was putting our fires and finding a solution around things. But this ...this disease. Has just taken over me. It did not start suddenly but slowly progressing and growing till now where I feel completely debilitated. I am no longer able to work, or maintain my home. I have been living off my savings and IRA. Doing as much as I can which is always very little. I know all this sounds really bad. but its not the worst. the worst is the pain. I hurt always. The pain is constant, it's excruciating. I try to overcome it, to do the simplest things. The pain always wins turning my attempts into failure. I feel so frustrated. I feel like I am loosing myself, my way of life.
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