The past week has been very difficult. I have had little motivation to do anything. I haven't been on my computer for four days. Every day I would wake up, eat a small breakfast, take my medications and go back to bed. I am completely wiped out all of the time. I have had to stay home and not work. Emotionally, Barbie and I are spent. If this is only caused by a virus, then I should improve. But if the bowel problems are from amyloidosis, I may never get better. You can imagine what that feels like when the proximity of death is so palpable.
Everyday I eat and drink as much as I can tolerate; this means a constant consumption of very small amounts of food and liquid. I am maintaining my weight so far.
Today, I have had some good moments. I had to give a lunch lecture in Rancho Cordova to a group of Primary Care Physicians. Mostly I answered questions about urologic issues and cases. However, at the end I presented a case which, in essence, were all of my symptoms and findings before I was diagnosed. Finally, from one corner of the room I heard 'amyloidsosis'. I was quite pleased that someone thought of it. The physician told me after that he once had cared for a patient with renal amyloidosis. At least the other doctors will think of it in the future.
I am hopeful. I will start Revlimid this weekend which did seem to work last fall to treat my amyloidosis.