When Having a Fatal Brain Disease Is Just One More Problem
I’m writing this from the hospital, where I’ve been since Tuesday evening. (It is now Thursday, 4 July 2019.) I’ve had … a rough few days. Please, allow Me to elucidate.
Sunday — I have absolutely no recollection of that day. My sister (whom I live with) tells Me that I stayed in My room most of the day, came out briefly, was quite rude to her, and then returned to My self-imposed isolation. She thought I was just having a bad day. She was right, it’s just that she had no idea how bad.
Monday —I woke up feeling … ok, I guess? I went to the kitchen, fixed some lunch, went back to My room and got on the computer. For all I knew, it was Sunday. The previous day did not ever happen in My timeline.
It was like time travel but somebody else took My place in the interim.
I knew that on Monday, I had a doctor’s appointment but … well, that was tomorrow, not today, to Me. A van showed up (I often take a Medicaid van to My appointments) to take Me to a completely different doctor’s appointment that apparently I had scheduled a few weeks previously and forgotten about. I was totally confused since I still thought it was Sunday. My sister assured Me that it was Monday, so I went to My (other) doctor’s appointment and asked My sister to reschedule the other doctor’s appointment.
Monday’s appointment (the one I went to) was with My counselor, and We kind of discussed the loss of time. As regular readers might be aware, I have lost time before, but usually only a few hours and almost never at home. We discussed strategies for ameliorating this and reducing the chances of it happening again, at least so notably.
Tuesday —I went to the doctor’s appointment that I had scheduled for Monday but My sister had rescheduled for Tuesday. In a way, I guess, for Me it was Monday, so I was there when I should have been.
I had scheduled this appointment in a hurry because there was/is something going on with My abdomen. There’s a … bump? Protrusion? Swollen area? … about two inches above the navel and slightly to the right. I didn’t know what it was, some friends had some suggestions but nothing I’d take to the bank.
This was determined by My PCP to be a ventral hernia. Yay. It’s causing Me no real pain or discomfort, beyond the usual psychosomatic effects, so We’ve decided that until it does become an issue We’re just going to ignore it other than trying not to lift anything heavier than a gallon milk jug.
So We left and drove home.
Literally moments after We got home a car pulled up; it was My home health care nurse person. That was good, We chatted for a bit, she took My vitals (again, as I’d just done all of this at My PCP), then she left. Note that during all of this time, I was feeling great. Wonderful.
I noticed that I was hungry around 1700 (that’s 5 PM to you normal people). So of course I fixed dinner. A good portion, too; it was some buffalo milk cheese and truffle … um, I forget the actual name of them, but it was kind of like an Italian pierogi. Boiled in lightly salted water, covered with butter, olive oil, and Parmesan cheese. Absolutely delicious.
After I finished dinner, I did the dishes and started to feel tired. Like, really tired. Previously, on the way home from the doctor’s visit, I had felt a little worn and was yawning, but this was more severe. I also started to get really chilly. (This is in Texas. In July.)
I went to lay down, started shivering and feeling cold all over, and turned My electric blanket on. That didn’t help. I called to My sister who brought Me an extra blanket along with a space heater and suggested going to the ER. I asked for a thermometer and took My temperature: it was 99. I decided to err on the side of not-caution and waited for an hour to see if it got any better.
It did not get any better.
My sister returned, and commented that it was really hot in the room. I told her that I could feel it being hot but I was still cold. She repeated that it was really hot. I explained that because I was going to die in the next few years I felt that I should get used to the heat. (She is a believing Christian and quite aware that I am a Satanist … as if the Satanic pride flag on My wall wouldn’t give that away.) Her response was to say that that wasn’t funny. Chuckling, I said that I thought it was hilarious. She said nothing more. (Honestly, I do love My sister very much even if Our views may differ. She is very supportive and caring in whatever circumstances may come.)
I decided to try something that had worked in the past when I was feeling cold. I got her to run some hot water in the bathtub, then went in and sat down in My shower chair to soak My feet (as they seemed to be the main focal point of My coldness). They warmed up considerably but I still was freezing.
Then I started to vomit. Like, with much force and gusto. Over the next five to ten minutes, I believe that I vomited up most if not all of My dinner. It did not taste quite as good coming up as it did going down. At this point I decided to heaven with non-caution and went to the ER.
They brought Me in, heard My story, took My vitals and said that My temperature was now over 100 and … that was bad. So after more tests and more waiting and more scans and more blood draws, I was finally admitted to the hospital.
Wednesday — I woke up feeling more normal than the previous night. I was no longer cold, I was feeling little to no pain, I was ready to go home soon. Then breakfast came. It seems that because I had been vomiting the previous night the doctor had placed Me on a “clear liquid” diet. So I got chicken broth, apple and orange juice, and a container of lemon Italian ice.
I was not happy with this. At all.
I was rather vocal about My dissatisfaction with the diet. To the server. To the nurses. To anyone within hearing range. I calmly (well…) explained that if I did not get solid food for lunch then I would go home. I had come in voluntarily and I could leave voluntarily, I would just cancel the “Consent for Treatment” document that I had signed and leave. My body, My health, My choice. That’s true for women wanting abortions and it’s true for Me wanting some damn solid food.
I got solid food for lunch.
The doctor came in just before lunch and said that they were planning to keep Me overnight and see if anything changed, and as he agreed to let Me have solid food, I decided that I would stay.
The afternoon was fine, the evening was fine, as I had been up most of the previous night I just slept all day. My sister visited and brought Me a few things from home. Later that night, My nurse on duty mentioned that the lab work had come back and there seemed to be an infection or something growing in the bloodstream. She had no details, but estimated that I might be staying through the weekend.
Thursday — So today the doctor told Me that I had sepsis. If you’re like I was until not so long ago and don’t know what that is, let Me quote the Wikipedia page: “Sepsis is a life-threatening condition that arises when the body’s response to infection causes injury to its own tissues and organs.” So what I get out of this article and other things I’ve read is that when you get sepsis your immune system inexplicably decides that being alive is hazardous to your health. It wants to get rid of an infection so badly that you become expendable, like collateral damage in the war on infection.
And now it’s Thursday afternoon.
Earlier this year, I was told by My hepatologist that if I were to get an infection, the fact that I also had hepatic encephalopathy would increase the fatality rate “considerably.” Now, according to the above-referenced Wikipedia article, the risk of death from normal sepsis can be as high as 30%. The HE increases that, again, “considerably.”
So all things put together, I might have as low as a 50/50 chance of being alive next week.
Which I think would be unfortunate. You, My dear readers, should join Me in this feeling as you will no longer have the opportunity to be regaled by My elegant and witty prose. For Myself, I still haven’t gotten to a strip club. (I’m asexual but I have a rather high sense of aesthetics.) I’d like to get a new computer as this one seems to be dying rather rapidly. I’d like to find someone to share My life with (just not have sex with), but who am I kidding that’s not going to happen no matter how long I live. I’d like to meet some of My online friends, both those I’ve never seen “in person” and those I haven’t seen for years. I’d like to give John Barrowman a hug. I’d like to go to some of the museums down in Houston, even. I lived pretty close to them for years and I never took the opportunity.
It rather feels, though, like My body is just rebelling. I used to just have a brain disease. Now I also have a hernia, sepsis, and fever and chills (now gone but this is the second time this year). So the brain disease isn’t the only thing My body has wrong with it and it’s not even the only potentially FATAL thing it has wrong with it. I don’t know why; I’ve moved to a more plant-based diet, I stopped drinking (ok, I did have one beer last week, only one), I’ve lost a lot of weight in the last year and a half, I’m trying to get out more. What am I doing wrongly?
I don’t know. And to be honest, I’m not sure I care. I was chatting with a newer friend the other day and she reminded Me what a wonderful, full life I’ve led. I’ve got a long wrong with Me but there’s nothing wrong with who I am, if you can understand that. I have experienced things and met people and explored so many aspects of life that I would think that many people My age would be jealous if they knew all of it. In the words of Thoreau, I have “[sucked] out all the marrow of life.”
Not to mention My incredible intellect. I’m not saying that I’m smarter than everybody. Every day I learn something more and find out that there are so many, many things I haven’t a clue about. Just over an hour ago a young cardiologist came by and did some imaging of My heart, and while she was doing that We chatted about what I was seeing and how the heart works and things I probably could have learned on My own but never did. And I loved that so much. I love learning, I love that I know so much, and I am awed by the enormity of what I don’t know. People today, especially younger people, seem to overuse the word “awesome” to mean “good” or “interesting.” I am not doing that here. I am an atheist but just thinking about the knowledge that I do not possess fills Me with a reverence, a sense of the numinous, a feeling of true awe.
At the same time, I realize that this brain disease I have will very probably, if I live that long, end up with Me having major problems with math, critical thinking, social skills, bodily control, and most everything else. So if it is a choice between dying now with people saying “Davyd died still learning new things and loving life” and dying later with people saying “Davyd died drooling and sitting in his own feces” … I’ll take door number one, thanks.
I’ll let you know if I live.
