I battled the system for proper treatment—said treatment now consisting of things like aide service, a shower chair and a tray table. The nurse/case manager was from a religious order and I was required to call her “Sister” even though she entered my life as a nurse, not a religious. She was appallingly ill willed but some of the aides touched my heart. The occupational therapist was as helpful as a Nazi death camp guard, nevertheless, I got a shower chair and handheld shower. Medicare paid $2000 for a $500 hospital bed, calling it a “necessity,” but refused to buy a $100 tray table to go with the bed, calling it a “convenience.” I ate supper off a $2000 laptop computer.
My computer-expert friend had a disabled wife, so he understood my computer needs. I gave him my credit card and he got me set up with proper equipment for working from a bed in the hospital. Paul Cohen told me to go to WebMD and I began to do research. The computer would often reduce me to tears. My brain was too fried to enable me to follow the prompts or retrace my actions. Robin Moore Fiscoe, my case manager, frequently was my salvation in this regard.
Robin had been my case manager but when she moved from Transitional Living Services, I lost case management services. Despite my repeated requests, the only accessible agency–Onondaga Case Management–would not properly evaluate me. The lack of a case manager was significantly contributory to the suicidal conditions that put me in the hospital and, consequently, the ICU. After I was transferred out of the ICU, Dr. Ghaly said, “You do not leave hospital without case manager.” Two months later, Robin was returned to me by the system; she became a uniquely vital part of my recovery team.
Simply put, others talked: Robin did. For example, at a discharge-planning meeting, a doctor opined that maybe I should have liquids at my bedside to keep me from dehydrating. Within a matter of days, Robin got funding from her agency and appeared in my apartment with a small refrigerator to put beside the bed. Robin, unlike half the psychiatric industry, did not presume to know what was best for me. She acted in service to my expressed needs. When I said, “I need to get out of this apartment,” we worked together to make it happen.
If moving is bad, then planning and executing a move from a hospital bed is so far beyond bad that it’s off the badness scale but we accomplished it. I moved from a dark, wheelchair-inaccessible, four-room apartment to a bright efficiency apartment on the 21st floor of an eldercare residence, Loretto’s Bernardine Apartments. Dr. Ghaly said plaintively, “Why you go to eldercare? Is for dying.” I was dying and I knew it, even if Dr. Ghaly wasn’t inclined to accept it.
Doctors gave a quick glance at my blood work and pronounced it normal. I charted a year’s worth of blood tests and saw the numbers creep slowly out to the edges of normal. At the existing rate of default, thirty percent of my blood work would be abnormal in ninety days. My nighttime oxygen level, unsupported, had dropped from 84% to 57%. If I sat upright for more than an hour, I would start to yawn, that is, gasp for air. I had to take naps every two or three hours. I was tired to death.
Although I still had poor gut function—I was excreting lettuce that was still green—the diarrhea had stopped. It had been caused by the HCTZ that was lately being prescribed by the doctor who demanded that I have a colonoscopy. Without the drugs to treat the nephrogenic diabetes insipidus, I followed the advice that doctors had unwittingly been giving me for a decade: “Drink to your thirst.” I drank a gallon and a half of liquid every day and urinated every two hours, day and night—but I no longer had diarrhea and it wasn’t costing the taxpayer’s $10,000 a year for drugs.
I am a Sagittarius, a fire sign: I need air to live. I had fought with the FAA to get a pilot’s license despite my psychiatric history. My late fiancée was a fighter pilot. On June 17, 2002, I moved to the 21st floor of the eldercare residence and my hospital bed was placed beside a tall, double window. My life in the sky began. My “front yard” gave onto a view of thirty square miles. My spirit returned to life in the world, even as my body retired to the old folks’ home.
The view from the wide windows, and the softness of the spring air coming in the windows, filled me with so much happiness that I quit taking Ativan. I had been taking 2 mg at bedtime for insomnia for several years, and occasionally taking it during the day on an as-needed basis. What combination of blindness and ignorance had kept me taking the Ativan when I stopped all the other medications, I do not know, but now the combination of gentle breezes across my bed and birdsong at morning so pleased me that I gave up the Ativan. I did not know that it was a benzodiazipine, a narcotic, and that I was addicted to it. I found out the hard way.
When I stopped taking it, I would sleep for twenty or thirty minutes, then wake up in crisis so severe that I would call 911 and be ambulanced to the hospital, where they would repeatedly tell me there was nothing wrong. I couldn’t eat or sleep; my blood pressure was through the roof; I was sweating and having trouble breathing. I went to the primary care doctor every other day and the Emergency Room every other night.
When I took the Ativan, I became devastatingly depressed and, in the early dawn, I would have terrible, terrifying sinking spells. It felt like low blood pressure or low blood sugar, yet it was neither of these. I knew, with every fiber of my being, that during those dark nights some unknown substance was falling to a level so low as to be unable to sustain life. I was near death. The doctors ignored me. (To be continued)