Brooke has managed another blog post, I am pleased to announce. It is an update of her journey towards her death from M.E. – myalgic encephalomyelitis. She also talks about “Canary in a Coal Mine,” which is a movie in production about M.E., produced by Jennifer Brea (also an M.E. patient) and others, to show the world what a terrible disease it is. Brooke has been asked to tell her story for the movie, and filming has already begun on that. This is indeed, an extremely courageous young woman.
Recently there have been a lot of questions in the community about what has happened to me and where I am with things. I am now very near the end of life, and writing posts has become next to impossible, but I wanted to try to get one more out. This post will be written in many parts, and may seem rough around the edges, but it is the best that I can do at this point. I know you will understand.
First, regarding care. My initial reevaluation for hospice care was denied – in part due to misinformation coming from the whole CFS mixup. After this, my doctor agreed to treat me himself, without the aid of nurses since he couldn’t find a way to get any into the home. Things began going downhill so fast, however, that he recently talked the hospice team into readmitting me…
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