IntrinsicTina

I have a friend, a faithful volunteer, who visits me, crochet projects at the ready, current events upon her lips, among other topics.

21 Mom and Dad popped by, surprising me, and giving me a gift of silk roses in a square, cut glass vase. Mom broke out her knitting, an aqua baby blanket, petit knits and purls in a pattern of squares. So delicate and sweet, I longed to snatch it up and nuzzle it to my face and inhale mom's floral perfume. Time sped by too quickly, they were off to celebrate Father's Day at Red Lobster. I graciously saw them off and marveled at my tears streaming down my face after they left.

2 Spoke with my psychologist today; I think when one is staring down the barrel of a terminal illness, they should never go it alone. There is so much to face and get through; my disease, ALS, amyotrophic lateral  sclerosis, otherwise known as Lou Gehrig's Disease, is a progressive and fatal, paralyzing neurologic illness that, inexorably, robs us of our lives, as we know it. As I have learned, terminal illness also affects everybody around us, sisters, brothers, mothers, fathers, children, grandchildren, extended family, friends, acquaintances, peers, employers, past all-of-the-aforementions, and you-name-ems, will all have feelings to process. And sometimes they process all over you, as if you don't have enough to deal with. Other times, you're processed right out of people's lives, as if you're contagious. Note: ALS is not contagious and I couldn't give it to you even if I wanted to.  ALS has the added benefits of affecting the brain in many of us, heig...

2 Last night, 6/3/16, a new-to-the-facility nurse entered my room to administer my night medications via my PEG tube. I tried to tell her to access my PEG by unbuttoning my top; she disregarded my attempts to communicate, reached under my covers, and lifted up my gown. I dissuaded her by vigorously shaking my head, signifying negative to her actions, as well as vocalizing the words, NO and MY TOP, to no avail. She kept arguing her case, which clearly showed me that she was assuming that I was being irrational. I was forced to keep pressing my objection, wasting my precious energy. In the meantime, a patient care technician (PCT) who understood me better came along; I was able to communicate to undo my gown buttons and expose my PEG to make my intention obvious. Again, she, the nurse advanced on me, yanking up my gown. Again, I had to vigorously fend her off but now I was forced to argue my intention with two caregivers, who assumed irrationality and forced care upon me. At this poi...