There is more than one reason that I haven't posted in nearly two weeks. First, I have had low energy during the day and fitful nights. A few weeks back I started taking Rilutek. I believe it's made me nauseous after every meal. So it's obvious that if I'm sick and tired, I spend too much time sleeping and holding off vomiting, always near a toilet. I cannot expect Rachel to type for me while I'm on the pot. Wrong and unsettling to say the least.
Besides ALS, bellyache and general fatigue, another element related to my lack of posting is related to my new realizations as I travel to wherever I arrive. As much as I've tried, I cannot seem to comprehend that which may heal me. I came to the conclusion last week that my personal involvement in my health has been generally weak. ALS is moving forward despite all my efforts to convince my subconscious that there isn't anything wrong at all. I must count on others to take up the torch and make me better. I plan to be receptive to any modality whatsoever. Normally I wouldn't put all my eggs in one basket, but the problem here is that I only have one egg. If I fumble, it breaks and I die. If someone else drops the egg, at least all efforts have been made to help me.
Without going into detail, my functioning is diminishing on a daily basis, ranging from problems swallowing, chewing, breathing, sitting up, speaking - my hands are generally useless. My biggest fear is not dying. My biggest fear is also not dying, but diminishing to the point where I cannot physically interact without mechanical help. I wish there were a line I could identify that I could refuse to cross, but if I cannot initiate any physical activity, my fate is not in my hands.
I have completed a living will that states I wish not to be resuscitated. I do not expect to be fitted with any breathing device that is designed to keep me alive by mechanical means. I'm not so hot on a feeding port in my gut either. I guess I need to cross those bridges when I come upon them.
