Navigating a 40 Watt World with a Swiss Cheese Brain
The beginning seemed innocuous enough—I could not remember when I had certain routine annual exams–although one was just two weeks ago and one was scheduled at the end of the week. I chalked it up to my strategy of convincing myself of good health by not recalling why I am on first name basis with the pharmacist or that doctor waiting rooms make up the majority of my social life.
I could do all the routine things life demanded—laundry, a bit of housework, some cooking, and even working. I traveled to work, traveled to an Art Retreat. The nightly walk from the restaurant to the hotel was difficult–I stumbled–but the street was dark and rough. The stars overhead were amazingly clear–maybe I was looking at them instead of where my feet were going.
It was hard loading my truck with all the things one needs for a fabric art retreat–much harder than loading them at home–surely not the knowledge I’d accumulated during the five wonderful days.
The drive home was hard—there are few cell towers in some parts of Texas–and I was forced to look for road signs that read south and east—I could not read the map on the Atlas I have stashed in my truck–maybe the Stage One cataract in the one eye had progressed to needing surgery in just two weeks. The whole world was dim–a 40 watt light-bulb world.
When I got home and tumbled into bed, I awoke in the middle of the night to see a man in my bedroom, the furniture was all in strange places–and I wondered if I should hide or pretend to be asleep until the man went away—it was my husband on one of his many nightly bathroom trips. And the dogs were not barking–a sure sign of someone unfamiliar in the house.
The next morning I struggled with the daily crossword puzzle–something I usually knock out in about ten minutes or so. I lost my car keys four times in about an hour; my speech was garbled–putting two words together with one syllable spelled backward; I could not name certain objects–things I knew well–but could only describe them. And my blood pressure was high.
Seeking medical attention on the week of Thanksgiving is a challenge–I ended up at an Urgent Care Clinic where I was sent to the hospital for a stroke workup. Everything was normal–there were no tumors lurking in my brain, no stroke, no bleeds—nothing—just a generalized weakness ( hard to hold a coffee cup in my hand–and I needed help to go to the bathroom and in dressing–I forgot how to put my clothes on). Finding letters on the computer keyboard was impossible–it would time out before I could write a word–and even then it would be misspelled.
Sent home with the instructions to followup with a neurologist ( I have an appointment for February), and to get my blood pressure medications organized–I did that the following week—and had a scheduled appointment with the rheumatologist–More medication adjustments–and I just happened to ask for blood work as I had lost the order sheet from the previous visit.
That Friday I received notice my credit card had been hacked and I had bought several people some very nice gifts from AT&T so I missed the panic call from the rheumatologist that I needed to go to the hospital immediately.
On Monday I was admitted with a calcium level of nearly 15–an extremely high level. It had gone from 10 to 15 in the space of a week.
More testing–more labs—my arms were bruised.. I looked like I had been beat with sticks. Another specialist called in–this time an endocrinologist….very young and newly completed his residency–so he was ready to find the weird and wonderful diagnosis that seem to plague me.
I am now much improved—the world now has a 100 watt bulb atmosphere–I can do the daily crossword puzzle in about fifteen minutes and the letters on the keyboard are no longer a mystery. There are still gaps and I struggle to do certain physical things.
Insurance companies have taken over the business of medicine–no longer can doctors decide when to send patients home–I was sent home with no diagnosis and unable to care for myself–the second time–once my calcium was nearing normal levels, the insurance company thought I should go home–again no diagnosis. It is difficult enough to get proper medicine due to their guidelines on refills—I can understand strict rules about narcotics–but blood pressure medications? While some physicians may find it a challenge to take care of patients in these circumstances–others just follow the guidelines –a cookbook approach—for me—not a good choice.
My working career is coming to a close–I don’t know how much longer I will work—I enjoy the challenges of figuring out problems, I enjoy patient contact— but rules that interfere with good patient care?
My current plan is to return to my usual strategy of not thinking about my medical diagnosis except when it comes time to fill my pill box on Sunday afternoon after church.
Sylvia, did you ever get a diagnosis? This is horrible. I am so sorry. I look forward to your blogs. What has happened? Your symptoms are necessarily cancer are they? You are now on my prayer list for healing.
Oh my gosh Sylvia, thinking of you and hoping for some clear answers and even clearer solutions!!!!
no cancer has been found although they looked diligently. The final diagnosis was an aftermath of the disseminated histoplasmosis I had several years ago—it sounds odd to me—but until something else shows up–that is what I have to live with. The treatment was an IV dose of a bi-phosphate–like Fosamax for osteoporosis to put the calcium back in my bones where it belongs. It is a scary thing–no way to know when my calcium is going up except my mental status and general strength. Much easier to look at a broken bone and number of leg lifts I can do than this. Thank you for your prayers—Honduras is in my thoughts in this trouble time.