My speech capabilities began to improve. It would be a stretch to say I was articulate, but I was making sense most of the time and my wild relapses dwindled to mere confusion that I could think my way out of within minutes, with some effort. My son, Cameron, was helping me learn to write again while I was still in the hospital, which was fine because I was bored. My first effort at cursive was about 1/8″ high. He said, “Can you make it a little taller?” We laughed as I practiced. I had a book with me since the very beginning when Michele first drove me to the ER (because I always have a book with me), but I couldn’t concentrate enough to read. I opened it a few times and tried to read a few lines and would give up. A terrible thought entered my head when I wondered if I would ever be able to write fiction and poetry again. This scared me because I knew it was not assured.
I remember one very nice nurse at York and one who was apparently assigned to torture me. The latter got me out of bed my second day there and said we had to walk and she was taking me someplace I wasn’t supposed to go. Seriously, that’s what she said. I was not enthusiastic…I had no energy and all I wanted to do was sleep. We walked past the nurses’ station and, without thinking, I reached out and touched the counter as we passed. She said, “Why did you do that?” – like she was the Gestapo. I looked at her and said, “Do what?” I had no idea what she was talking about. She said, “Touch the counter. Why did you touch the counter? Do you always do that?” Now I’m wondering which one of us is the crazy person. I do have a habit of touching things. I didn’t know that was not allowed. Not to mention, duh, I had a fall-risk bracelet on my wrist.
She took me to a computer room (the off-limits to patients place) she had described so mysteriously. She knew I was a Realtor and wanted to “test” me to see if I would be able to “work” when I went home. She seemed to have no consideration for any recuperative period or physical therapy I might plan on having. Now, I couldn’t really write and could barely type. In fact, my first few days home I spent a good deal of time fixing typos on super short emails I needed to send. She forced me to go to realtor.com and do a property search for her. Well I had some difficulty. I explained to her that I use three different mls’s for all my work (much more intricate than what she wanted) and don’t use public sites like realtor.com. Not to mention they had recently revamped their site which tends to confuse a normal person with a properly functioning brain. She was not happy and asked me to do something simpler. I looked up the hours of the nearest Perkins Restaurant and that finally satisfied her. I don’t remember the trip back to my room, but I’m pretty sure I didn’t touch anything.
I was unaware until weeks later that there were some heated discussions about sending me home. Jess overheard the nurses talking about a terrible bed shortage they were then experiencing. I wanted to go home, and Cameron always wants what I want. Jess always wants what she deems best. Cameron and the doctor won and I was released Wednesday night. Jess was worried although I didn’t know it at the time. They were releasing me although they had no idea why a UTI infection had affected me so severely and didn’t know if there was anything else significant going on. While waiting for the car, I felt sick and had my own reservations about leaving the hospital. I couldn’t tell Jess or Cameron since I had pleaded to be let go. So, it seems everyone was in the dark.
Home again, I felt a little better…because home has that effect on people. Looking back, Jess was right and I feel I was released too soon. Thankfully nothing horrific happened. They remained with me, taking shifts, and nursed me back to some semblance of myself. I did sleep a lot and it took weeks before I could go without a daily nap. Encephalopathy does make a person exhausted, but I was lucky to recover. Some people don’t. There was still a little bit of residual confusion for a few weeks. Three weeks after coming home I had to go to Johns Hopkins for a regular visit with my doctor there. Cameron drove me and Jess was meeting us. They called me from the waiting room to take my vitals after which I rejoined Cameron to wait again. I looked at him and said, because I was concerned, “Cameron, my temperature is much lower than usual. It’s 196 degrees.” He tilted his head and gave me a grave, questioning look (a clue). Supreme concentration crossed my face and I said, “No, that’s not right is it?” I said, “It was 96.1”, which, sighing with relief, he then believed.
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Subsequently I did a great deal of research on encephalopathy and encephalitis. There are many, many causes and the symptoms are quite odd. They can also be fleeting or extended like mine were. All of them should be considered serious enough to get to a doctor or, preferably, the ER asap. If you suddenly can’t speak, for instance, even if it is only for a minute, get to an ER. If someone becomes disoriented and/or is not making sense, get them to an ER. This can come on quite abruptly. It could also be a stroke, but you can usually rule that out (as my friends did in my kitchen) by asking them to stick out their tongue and then to smile. If they can’t do that…probably stroke. If they can, probably brain swelling from infection. In any case, this is serious.
I am still considering following up with a specialist, although my new family doctor is basically telling me I’m being ridiculous and I should let it go. I expect to have another doctor soon. I was trying to find a specialist online on my own and was frustrated by my search. I suddenly had a brilliant idea. I typed in Johns Hopkins and encephalopathy and, to my surprise, I learned that Johns Hopkins is the only hospital in the country that has an entire department dedicated to the study and treatment of encephalopathy and encephalitis. If I do get another opinion as to what happened to me, I will go there.
gettysburggirl 