July 28, 2011 – Green Shoots of Hope

I know this has been a bummer of a blog for some time now but today I had a small victory. I ate an entire packet of oatmeal by mouth. Yep, that’s what constitutes a win these days.

I’ve noticed the past couple days that when I wake up my throat is remarkably low on the pain meter especially when I swallow. Today I decided to test it by eating more than an ounce or two by mouth. So I prepared the oatmeal with milk and numbed my throat with viscous lidocaine and away I went. Got it down. Eight ounces by mouth. Yippee!! My balky stomach didn’t even rebel too much. Unfortunately as each day has worn on my throat becomes more painful by evening but overall I still think I’m doing better than I was. My stomach continues to be a fragile thing and it’s causing me stress to no end. I decided that I’m suffering from anxiety causing all kinds of other problems (sleeplessness). I saw RadDoc today and he prescribed an anti-anxiety drug (Ativan). I’m going to take it an hour before bedtime and then go have a long sleep (I hope). My only concern (more anxiety!!) is that one of the side effects is…..wait for it…..an upset stomach. Just what I need. This could be another short term fix.

My night feeding by pump is becoming a failure. I have to sleep sitting up which is bad enough but each night the results have been worse than the night before. I was down to getting only one can of Isosource (started with 3 before my barfarama a week ago). Last night the pump didn’t work and I didn’t even care. I just went into the kitchen and stuffed the can into my tube the regular way and then went to bed. I need to sleep at night.

Emotions:  All my normal coping mechanisms of life have left me. My wife says I’ve lost my armor. She’s right. We spent much of life figuring out how to deal with the everyday stresses and challenges. I did pretty well. I took charge, became a good problem solver and never let much bother me one way or the other. It worked very well for me. Now I have NO control and NO coping mechanisms to draw from and hence the anxiety. I’m not sure I’ll ever get the old ways back. I’m a changed man no matter how this turns out. I’m just not sure it will be for the better.