2016 was a difficult year for me -- at least until July 30. Over Martin Luther King weekend I rammed my foot into a large box in my apartment and broke my right tibia. Besides this event bringing to light my uncontrolled apartment clutter and the necessity of standing to keep up bone strength, the break kept me in my bed 23 hours a day for three months. When I finally emerged feom my bed in April, I knew I needed to take care of a long-standing problem with a feeding-tube that had been installed six years before. My GI doctor had been delaying removal of the tube; he was apprehensive about leaving me tube-less, despite the fact that I had been eating by mouth for the last ten years, and the tube was clogged beyond redemption -- and smelly!
So as soon as my leg healed and I was released from my prison sentence, I made an appointment with the reluctant GI MD to finally stand my ground. First I saw my primary-care physician who agreed that it was time to take definite action, and advised me to go off my Xeralto [blood-thinner] for a few days before my GI appointment. So on May 11, I rolled defiantly into my GI doc's office, and he tried to stall me again with the blood-thinner excuse; but I informed him I went off the blood-thinner several days before. It still puzzles me that my GI doc and my ALS team were reticent to remove a PEG tube that hadn't been functional in at least two years and was reeking. I said I needed the tube out NOW and out it came. The tube before that one had come out about five years earlier and the hole closed up within a few hours -- which is why people with PEG tubes are told to go to the nearest ER immediately if the tube falls out.
What followed were four endoscopic procedures to close the hole -- which I was told was a RARE occurrence. Anyway, the last procedure was performed on July 30. Until then, I had barely been able to leave the house for the amount of stomach acid and food that was pouring out from my belly, 5-6 dressing-changes daily and ruined tee shirts and bras, as well as the odor that I would take with me everywhere -- no sooner was I out of my bed from my broken leg than I was a prisoner within the four walls of my apartment. The weather was warming up and I was getting more and more frustrated. My first trip to Rockaway Beach was in early August and I felt as if half my summer had been robbed from me. Is the situation perfect now? Not by a longahot; I have a "button" covering the hole and it still lsaking. Nothing is perfect.
I learned some lessons in the past year. I learned to be more mindful and even that it's okay to stare into space or otherwise just sit still and collect my thoughts. I had a lot of time in bed to think. I have learned not to take anyone at his/her word, but to watch what they do. I have also learned that most people will not be honest with me because they are convinced that the weakness in my body translates into weakness of spirit; the opposite is true -- I am so much stronger emotionally than I have ever been. But most of all, I learned that sometimes it's the ones closest to you that can hurt the most. Most importantly, I have realized that we sometimes have expectations of certain people in our world to be there for us, but often those are the ones who are not. And I am learning to live more in the present and to forgive hurts from my past [even though I am still paying for someone who hangs onto a perceived "offense" from 20+ years ago] I have no plans for 2017 -- except to finish binge-watching all seven seasons of "Shameless". I have suffered losses -- my beloved furry companion Chelsea on July 4, and two friends who ended our association with lame excuses which I saw right through [Facebook doesn't lie -- people can be really stupid or they think I am-- after all, isn't it a given that wheelchairs mean the person sitting in them are automatically of subhuman intelligence?]
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