To Sleep, Perchance To Dream
About three months ago I began to feel the effects of ALS in my lungs. As my breathing became shallower it began to have negative effects on my sleep and appetite. I saw a pulmonary specialist who, at that time, didn't seem to think I needed any kind of help. He was wrong. My sleep pattern deteriorated to where I was only sleeping a few hours a night. I started having hallucinations in the wee hours of the morning, feeling nauseous during the day and my appetite deteriorated to the point of being dangerous.
I returned to the ALS clinic and saw a new pulmonary doctor and my neurologist who both decided that a noninvasive breathing ventilator was a must at night and wouldn't hurt during the day if I was excessively tired. A sleep study was required for insurance purposes (if you can afford them and have needed them, you have noticed that more often than necessary, insurance companies require you to waste money proving what the doctors already know, and all of my doctors agree that in cases of ALS or any catastrophic illness, there should be fewer questions about a patient's needs; they are as fed up with the insurance dance as we are) but before the obvious results of the study came in I ended up in the hospital. Had I received my BiPAP when it was requested, the hospital could have been avoided and thousands of dollars saved.
My frustration with insurance companies aside, I am home now and am breathing at night with the assistance of said BiPAP machine. Blessed, wonderful sleep has been restored, my appetite is slowly returning, nausea is receding and although I am somewhat weaker, I am feeling better each day. I am looking forward to welcoming spring, in spite of the fact that it seems to have lost its way to Vermont, and reveling in the rebirth and rejuvenation that comes each year at this time.
This post would not be complete without mentioning my family. Their love and support continue to shine through and they keep me going when I feel like I cannot. And my angel, Barbara, who is not only a caregiver but also a good and trusted friend, as is Lolly, who is always there.