Where I've been, where I am. . .

“Bemis contentedly sorts the books he looks forward to reading for years to come, with no obligations to get in the way. Just as he bends down to pick up the first book, he stumbles, and his glasses fall off and shatter. In shock, he picks up the broken remains of the glasses without which he is virtually blind and bursts into tears, surrounded by books he now can never read.”

-       https://en.wikipedia.org/wiki/Time_Enough_at_Last     -

 

If you’ve come this far then I really want to start with a sincere ‘thanks for caring’.  Warning though, this may get boring or even pathetic after a while. I'm not fishing for condolences, thoughts or prayers, I'm just over-explaining myself as Angel can attest, is my most infuriating trait. 

Several have noted that I have been largely absent from social media for the last few months. Yes, yes I have, that was completely deliberate. Bear with me and I’ll explain.
Several folks have asked about my health since my last few posts in early spring mentioned being in the hospital. . .  well, that’s fair.

Here goes.

Like many people during this bizarre pandemic thingy, days of ‘quarantine’ seem all muddled and jumbled since it started, so forgive inconsistencies in chronology within. I don’t keep a daily journal, so yeah, May 5^th was, in my head, completely indistinguishable from July 3^rd. Not that those dates have any specific bookmarks. . . hardly any in the last 5 months do.
The quarantine hit me hard. I don’t like working from home. I had never really gotten used to it. I’ve found my new-world-order stride now, but still head to the station every couple of weeks if for no other reason than to remind myself of a larger universe than my living room.
Not a headline: I have anxiety issues. Normally quite tolerable and manageable. However, on occasion, though I often joke about dropping into a fetal position in a dark corner and quivering and sucking my thumb. . . in reality, there actually have been times much like that. I am rather glad that now, in  21^st century America, that I can finally admit it without my maturity or manhood being significantly called into question.
A few days or weeks into the WFH lifestyle, I noticed a significant change in diet/general health. Angel says the diet reduction has been going on much longer than that, I’ll take her at her word. She’s so much smarter and attentive than me in so many important ways.
It got pretty bad. Mostly these things, often randomly, sometimes, all at once:
Noticeable tremors (inability to write with pen and paper or work with texts on the smartphone.)
Inability to sleep.
Inability to wake up.
Inability to eat. . . anything.
Slurred speech.
Noticeable balance issues.
There may be more, but in retrospect many of these things were probably the inevitable result of the one thing, the inability to eat.
Then one day, my frustration and complete lack of sleep, etc., had me on my knees, sobbing.
She took me to the emergency room. I didn’t object.
The ER poked me and drew blood. Pretty soon they sent me directly to admitting. My sodium level was below healthy levels by an alarming margin. Two days in a locked down hospital, no change of clothes, no visits allowed. I was, of course, miserable. I didn’t sleep at all even though the staff kept encouraging me to try in spite of the fact that they were taking new blood draws every other hour for two damn days and nights.
They released me once my levels hovered near the normal mark. I felt 100% better.  For about 20 hours. The next day, I still couldn’t eat. I hadn’t eaten very much at all in the hospital but that could easily be explained away since this hospital’s food offerings were just south of disgusting.
Most of the other symptoms ebbed. The eating issue remained. It sort of came and went, but mostly remained. I was surviving on protein shakes, watermelon, fresh peaches and pretty much any unhealthy sweet, candy, pastry. . .  
Sweet, including the fruit, seemed to not trigger the reflex. I can’t explain this, nor could my general practitioner. More on him later.
I stated that part about the eating in the past tense to refer to my recent history, however it should be noted that, as of this writing, that has not changed. It is currently past one P.M. I have so far today had a single Twinkie and a protein shake. Nothing else. All day yesterday: half a leftover sausage egg biscuit and about half of a fresh peach, No protein shake (I forgot to have one though Angel has been buying them by the case.)
On Sunday, I thought I was improving. I felt almost frisky compared to the lethargy of the last four months. So I spent the day preparing dinner. My famous grilled chicken thighs, sweet corn on the grill along with fresh potato salad and a small iron skillet load of Jiffy brand cornbread. I love this stuff!
Annnnd then no. Can’t do it, not even a little.
Here's what it is. I’m not a medical person, never cared to be, so I’ll try to describe it accurately in words that I actually understand.  Icky Alert!!!! :
I take a bite of any solid food, maybe two or three bites, then suddenly my throat clamps shut. I run to the nearest available plumbing receptacle, gagging and retching violently. Then my nose gets stopped up. I can only get through this by coughing up mucus and blowing my nose with as much force as I can muster. This lasts for five to ten minutes. After this I am no longer longing to put anything in my mouth for at least a couple of hours. Probably a Pavlovian reaction, but still.
For four or more months, this is what I am dealing with, almost every damn day. Seriously, almost every damn day. . . for four or more months.  Somebody I mentioned this to commented about how that must be frustrating. I suppose that would be very accurate as long as we can also agree that the American Civil War was “A prolonged protest.”   It left ‘frustrating’ in its swirling wake three months ago.
I should mention that with SOME subsistence, like a peach or a Twinkie, the vitamins and protein shakes, I am able to manage most daily tasks, though I am weaker than usual and tire very, very easily.
 
Back to the medical processes. After the hospital stay my GP interviewed me. I told him everything I knew to that point.  He suggested about 36 more blood draws and issued me a prescription for a low level anxiety drug. I recall telling him, since we’d tried this sort of things five or six times over the last 8-9 years (panic attacks were the very reason for me starting to see a doctor regularly.)  “Maybe just something strong enough to round off the edges, not something that will try to blow it out of the water.” I’d had some bad experiences with the earlier attempts.
Don’t ask me the name of it, but it seems to have done the trick. Now even my worst days and hours are quite tolerable. Yes, I still get anxious, yes, I till sort of panic, but no, I’m not cowering in a dark corner anymore. I can live with it.
This visit was about four months ago. I’ve had two or three more since. Four months that, save for the anxiety meds, have been completely without a change in symptoms, diagnosis or actual treatment.
CT scan, 2 MRIs, dozens more blood draws? Sure. . . still no diagnosis or treatment plan. At one of the later GP visits, who I was, even before this thing, a bit frustrated with, suggested I take an appetite enhancer. I was confused. “I have an appetite, I’m pretty much always hungry, I just can’t swallow anything.” He stopped and looked over the e-tablet he carried. He swiped up and down several times. Then he actually, finally made the entry. .  . that’s right, for several weeks or maybe months all the tests all the blood draws tens of thousands of dollars of medical work. . .he was looking for an appetite problem.
Frustrating? Hell yes!
He did put me in touch, finally, with a GI specialist. Who had an appointment available a month away. Well, progress? Sure.
This whole thing started roughly the same time as this quarantine. The scheduled endoscopy appointment was nine days ago.
Guess what? They found something!

No it was not cancer, heart disease, organ malfeasance, the big ticket items a guy my age worries a lot about. In fact with all the scans and blood draws, I am assured that I am in great shape, in spite of the fact that in my entire life I’ve never really come close to trying to take care of myself properly. DNA roulette I suppose, just got lucky.
I forget the medical name for this and I refuse to lift a finger for anything that closely resembles research, as that sort of thing inhibits the already wobbly creative process.
Best description I’ve heard:
“You have a yeast infection on your esophagus.”
Yeah, a bacterial infection, or as I prefer to think of it fouled up mushrooms in my throat.
The cure? The same damn common medication that biological women are given for yeast infections in their unmentionable parts. The same pill that’s been around for a lifetime or two. The only difference? Women are generally given one dose. . .  one pill. I was given 14. I suspect that the MD was underselling the magnitude of my crop of funky mushrooms a bit.
I am currently on the fourth pill. I thought it was already starting to work for about a day and a half. Then I expertly made that favorite meal and then couldn’t get past the third bite.
It should work. Maybe I should exercise some patience?
Patience? PATIENCE? Have you not been paying attention? I have a lot of things going for me. An award winning, very satisfying job, excellent co-workers, a full head of hair, a winning smile, I eventually won the marriage lottery, I could go on. . . (and often do.) but PATIENCE? at this point?  Sorry, insufficient funds at the moment.
Okay, you’ve stuck around this far. Stay with me. I may have buried the lead. . . maybe. Stick around.

Anyway, the reason I dropped off of social media was an awareness that I was.  . . let’s just call it a bit "mood-swingy" and leave it at that. When I get frustrated I tend to verbally express it in greater than necessary detail. I chose not to respond to casual queries or make late night, angst-fueled posts. I went on hiatus. Most notably I stopped posting photos of food, which did not escape the notice of many of my ardent fans. But you probably understand why now. If not, I will summarize in words that even the simplest heathen among you should understand:
Because I haven’t been able to so much as finish off a simple half- sandwich or single slice of frozen pizza in FOUR DAMN MONTHS! My motivation to prep fine southern-style meals or eat out is completely shot. I  ain’t gonna finish it anyhow, WHY BOTHER?!?

The only good thing and it is a great thing, is that I know, for certain, that I am, though currently approaching my senior years (stop laughing!) in really, really good health. No cancer, no organ disease or failure, no heart condition, cholesterol and BP are fine. I know, with precision, that my body is, except for a throat infection, in very good shape. Most people can’t say they know this much about themselves.

Oh, there was/is one other thing that was found I almost forgot to mention.

I have a marble sized mass between the left and right hemispheres of my brain.

I’m not deliberately "burying the lead" as they say in journalism parlance. I simply do not know yet, and neither do three or four doctors that know about it, is if it has anything to do with anything. I did discuss it with my neurosurgeon, yes I seem to have inherited a neurosurgeon along the way, and we still have future appointments to investigate it further. There are theories afloat how it may be causing things, but no smoking gun. We do know this, and it is good to keep in mind, so to speak: It is definitely not cancerous. That was confirmed in the noggin MRI that I got whilst we were still looking for an appetite issue. It is akin to a brain pimple, just a small blob of mass.
My neurosurgeon explained that we have no idea how long it has been there or whether it is or is not growing, since there are no brain photos prior to the one I had a couple of months ago. I will be seeing him again next week and he’s going to show me the images. I don’t know why he doesn’t just Instagram the images, maybe he’s old school. I wouldn’t mind, I’d kind of like to see actual images of the keeper of all things I know and have ever known and all things I have ever imagined.
Wouldn’t you?

I, like Mr. Bemis, am currently surrounded by the very things I cherish, a full pantry, freezer, refrigerator and easy access to every other imaginable sort of food, yet, am unable to consume.

** This Twilight zone reference is from an episode I saw as a child. I had just been prescribed my first pair of glasses. I have remembered nearly every detail of that episode my entire life.

***** Note: Angel has been, well, an angel during this whole stupid ordeal. Her patience and tolerance are awe-inspiring and very, very much appreciated. She’s seen what this thing does and has consoled me to no end. She’s seen my fickle moods and yet, does not complain. She drives me to my appointments and listens in to the medical phone calls, at my request, to make sure I heard what I thought I heard. I cannot imagine going through a Kafkaesque ordeal like this without her.

******  Extra note:  I am not terminal, I am not dying, in fact, aside from the eating thing, I feel fine and can manage a day just fine. I am not always angry or frustrated. Most of the time, except mealtimes, I try to ignore it altogether. I try.  I am on a larger scale a lot better off than many, many friends and family members. I am sure one day I will look back on this whole thing and . . . . I don’t know. At least it has distracted me from that whole pandemic thing. . . How’s that going anyhow?