Twenty-nine

Shopping/Free-write

I’ve not done much shopping, as as I write this, I’m on a train headed back to Alexandrai.

It’s so strange how I can now talk myself out of just about anything that I might have wanted for a moment.

Even momentary urgest to maintain are fleeting.

I could fire everyone right now.

What does that say about me?

Yes, I’m going to do that some, at least.

I need to find a new dentist, PCP, and dermatologist. I’d be working on that right now, if I wasn’t on the quiet car.

I would say that I’m very dissatisfied with many things in my life, but that’s not true. I’m just so ambivalent towards pretty much everything that I don’t do anything.

I guess the question ought to be whether dissatisfaction might be preferable.

I just don’t know. And I’m not interested enough to find out.

Tomorrow is the final day of this.

I’m not sure what I should think or feel. Ten straight Novembers.

I think I should feel some sort of accomplishment to say that.

But I don’t.

Twenty-eight

Thanksgiving

So, I’m writing this from my inlaws’ couch, with the Macy’s Thanksgiving Day Parade.

We left out at about 0630, and got down without too many issues.

My wife got the turkey in, and we’re waiting for my mom to show up.

This is the first time I’ve been down here since I left last May. No feelings of comfort at all, whatsoever.

So, the plan is do dinner, go to a hotel for the night, then I get on the train to go home in the morning.

But I do what I’m expected to do.

*shrug*

I should be looking forward to the football games. Even moreso with the Saints playing the Failcons tonight. But I’m having trouble being excited. About that, or much of anything.

*thinks of turkey*

Nope, that doesn’t work, either.

Maybe I’ll have some inspiration while I’m on the train tomorrow.

Twenty-seven

Write about social media. What are your accounts? What have you set aside?

I’ve heard a lot of discussion over the past few months saying that social media is very destructive. Maybe that’s too much listening to Bridget Phetasy.

Still, there’s been the thought that’s been going through my head for some time now that you can leave.

I stick with things longer than I should too often; just how I roll. Still, when I do leave, it’s a decision I’m not often going to reconsider.

For the social media sites, it’s probably more difficult because of what they do to make things addictive.

But, as is the case with some of the therapy I’m doing lately, I am able to resist.

What’s going on on Facebook?

Uh. Maybe I’ll look later.

Or maybe I won’t look at all, because fuck them.

Choose something different.

You’re free to do that until the men with guns come and tell you to submit, or get locked in a cage.

A nastier follow-on comment to that just got deleted.

I’m self-censoring, even without the ginger, or the totes-didn’t-used-to-be-evil company’s urging.

With the self-censoringediting, though, I wonder if it’s really a problem. You’ll be hard-pressed to find someone who’s as much of a free speech absolutist as I, but I really don’t see a problem with people watching what they say.

Yes, you can shout “fuck” in a crowded theater. Yes, the proprietor is free to kick you out. Yes, you can shout “fuck” on a street corner. Yes, you can probably be ticketed for doing that. Yes, you can shout “fuck” in your own living room, and nobody, other than the gathered assemblage, should know or object to it. Alexa, please divide your microphone gain level by zero.

Tomorrow is going to be a very long day. We’ll see if I have energy to stay up to watch the Saints in Atlanta. Tryptophan and travel may have taken me out by then. That, and I have an early train to catch Friday.

But, as far as what I use.

I still look at Twitter quite a bit.

I check Facebook every couple of days. The FB app is gone from my phone. So’s FB Messenger.

I’ve deleted the Instagram app because I really don’t like some of the privacy things FB’s done lately, or their please-regulate-us-and-cement-our-market-dominance credo

I’ve messed around some with Gab and Minds.

I still check Fark, mainly on the weekends.

I’ve developed a hatred, perhaps irrational, for Reddit. It was slightly less pretentious when it was called Digg.

So that’s about it. I’m sure there’s things I’m leaving out, but I’m leaving myself out, too.

Twenty-six

Healthcare situation (reach-back to 2016, trip to Georgetown.)

I’ve written about this some this week already.

MS stuff

  • Neurologist at Georgetown
  • Tysabri infusions at Georgetown
  • Other stuffs here

Since the move to ALX, I need to find a new PCP and a new dentist.

I do like the folks I’ve been seeing since I came to NoVA, but they’re a hike for someone who can’t drive.

They’re also, I think, outside the short bus service area. (read: ADA Ride paratransit)

I have an appointment in late December to address something else that is a side-effect of everything else long-term.

I still have my fingers crossed that there’ll be something that miraculously fixes what ails me.

At the same time, I’m not holding my breath on it. i recognize that the MS probably isn’t going to kill me; I’ll probably die of cancer or cardiovascular disease like everybody else.

The question is whether I live as long as my male ancestors. My dad was 59 when he died. His dad was 54. But my maternal grandfather is 90, and my only living grandparent.

But lately I worry more about people think they should be able, with plurality approval, force me to live by their prescription.

Just a few more. I hope there’s something where I can really dig in and write. I know that there’s a free-write there. Hmmmmmmm.

Twenty-five

Recap of your year month-by-month.

Yeah, I’m just not going to do this one right now. I really don’t have a firm memory of the things that happened last winter. I know I got this job, even though I didn’t go looking for it.

Then several months of bouncing back-and-forth to Amazonville to meet my time commitments there.

The whole time, pretty much, I was looking off and on for a new place for us to live.

Takeaways?

  • DC is too expensive
  • Driving in DC is terror-inducing (not for me, since I can’t drive anymore, but for my wife)
  • PGC, Maryland, especially the parts bordering Southeast DC,sketchy as fuck.
  • MoCo, Maryland, home to about half of all the bad local ordinance stories you see on TV news, or read about in magazines

So we ended up in Alexandria, Virginia.

I can get around well enough, here.

Today was a long day. Traffic was nuts, but I did get pretty much everywhere I needed to be on-time.

I am tired. So that’s it for today. I may look to see if I can do a month-by-month thing later this week, when I’m back from Thanksgiving fun.

Doing that last year did help me focus on a few things.

Hasta….

Twenty-four

Write about three things you did for the first time in the past year. (reach-back to 2016)

From November 18, 2016:

Okay, so three things I’ve done this year that I’d never done before.  Please excuse the odd organization;  i started with bullets, and I’m not sure if that was the correct way to go.  There’s multiple paragraphs for each.  Of course, if I was writing a DoD PowerPoint presentation, they’d be awesome.

Anyway, on to it….

  • Ate a raw oyster. A few, actually. They were listed as a specialty at my friend’s restaurant. I’d been considering doing it. The opportunity presented itself, so I went for it. Reaction? Not bad. Probably something I wouldn’t go for often, but it was good. If you want an example of what a nerd I am, in the months leading up to that time, I actually googled how to eat them. Do you chew them? Swallow whole? What? Obviously, roasted or fried you chew, but what of the raw variety. The answers I found said, essentially, take a few bites, let the flavor circulate around your mouth, then swallow. Yes, this is a pretty lukewarm reaction, but I’ve found months later that I have a craving again. It’s the oddest damned thing.
  • Spent a night in the hospital. This one didn’t happen until it was oyster season again. Obviously, they don’t serve those there. Both times were terribly unpleasant. One night the first time, two the second. The second instance was one day shy of a month later. Both were due to infections. Both of different bacteria. Both, ultimately, of the same cause. Protip: when you’re killing your immune system every four weeks, inserting foreign bodies into your body is a really bad idea(TM). Ultimately, I place the blame on one medical provider. I won’t write much about this here because I’m still considering all options (and, yes, that includes whatever legal remedies might be available). But, in my current job, I have no leave at all. None. I don’t even get paid holidays. If I’m not working, I’m not getting paid. I was also completely out-of-control. When I was younger, I prided myself in my ability to put up with nearly anything. Since I got sick, I’ve had to get over that. There’s things that I just can’t control anymore. My body is included in that growing list. That includes my emotions. I’m tempted to go back to some of what I wrote in about 2005 where I felt like I was completely numb to everything. Things have certainly changed. There’ve been high highs, and low lows. Sarah and I chuckle at one of our animated sons, Butters from “South Park,” (And if you know either of us, you can see how that’s our boy….) who was sitting on a curb crying after his girlfriend (a waitress at a place modeled after Hooters) dumped him. Stan was sitting nearby despairing about getting blown out by his new circle of friends. “I’d rather be a crying little pussy than a faggy goth kid.”
  • Walked away from a terrible work situation. Here, I’m talking about my last job. I don’t even try to miss it, knowing I won’t be able to. I’m still on decent terms with a few of the people I encountered, but there’s others I hope I never speak to again. Aside from the last two jobs, I’ve never felt that way before. Again, there’s a lot more I could say on this one, but won’t. I was used. I hope the people responsible have memories so short that they can look themselves in the mirror again someday.

I could write for hours about these, but I think I’ve said enough.  The last one is a bit of a cop-out;  I could have written about the sheer volume of whining about the election.  Oh, you’re going to have a peaceful protest?  Yeah, I give that about half an hour.  Also, nobody cares.  The Commonwealth of Virginia supported a loser.  Again.  This has been true many times in the past.  So, too, that I voted for whoever lost.

But I get it.  I’m a bigot because I didn’t vote for the party of historic racism.  Hmmmm…okay.


I suppose I thought there were a few things I could write about when i plucked this one out, but I’m really having trouble picking something out that’s not sounding like a boast.

Reading the old stuff, though, it’s tough to relay how much that year, in retrospect, fucking sucked.

This is the year, however, of trying to get some things really together.

I’ve gained some insight into why I’ve done what I’ve done sometimes. Also, in retrospect, I’ve not done anything I’m really ashamed of, either. Reading the second bullet there

I do feel, now, that I’m free of some of the burdens I’ve had since I got laid off in 2013.

What I need to be able to do, however, is really forgive some of the folks responsible for how I was treated during those lean years.

*steps away*

Yeah, this prompt is really not working, so I’m going to dig through my drafts to find something else to write about.

Nope. Nothing I’d like to talk about.

*leaves for another cup of coffee*

Still nothing.

Trying to push aside the thoughts of fried porcine delights that are entering my scarred brain. (Canuckistani bacon, if you were wondering….)

And just as I finished spitting that out, my wife comes back from the store, and asks if I want turkey sausage. Yeah, I guess that’ll probably meet the craving.

As for the rest of this entry, I almost feel like I should have some things I desire going forward. Need to get about thinking of a few.

In the meantime, I’m going to stop now. I’ve written enough. Enough for awhile.

I should go figure out accommodations for the trip later this week.

Twenty-three

Describe your most recent doctor visit. I’m specifically looking for the one(s) you see most often. (reach-back to 2016)


From November 12, 2016.

I’m not exactly sure what I was thinking when I wrote this prompt. Maybe I should have consulted my calendar before i wrote.

My two most-recent visits were with specialists. One to replace the folks likely responsible for my two hospital stays this month. The other was to see what’s going on with something else in my messed-up body.

I guess my most recent medical visit was with my longtime dentist. I’ve been seeing the guy pretty much continuously since I was in high school. My medical issues have definitely included attack on my teeth; he’s been helping keep me sort of functioning. Yesterday’s visit was for a cleaning. I have to get an extra one each year because my disease modifying drug affects my oral bacteria. That said, no cavities!

As for regular medical stuff, I’ve been seen at Ghent Family Medicine at Eastern Virginia Medical School since the day that I had the MRIs that led to my diagnosis.

I should probably write a counter to this lousy Yelp review. They’ve been great for me, especially last year when my oh-so-wonderful Healthcare.gov plan wasn’t accepted by the two specialists I’d been seeing.

Dr. Robert Newman is my primary care physician. He helped find new specialists, including my new neurologist, Dr. Kuczma. I also have to tip my hat to Dr. Thomas Grant, who has looked after me for several years at EVMS.

My last visit was with a resident at EVMS (who I’d link, but I can’t find her bio right now….Dr. Jodi Newcombe). I was there to follow up with them after my second hospitalization, and to get a prescription refilled. She was one of the residents I recommended to my wife after the one she’d been seeing left. My wife ended up with the other one, who’s since left for a fellowship, but she went with me to my last visit with Dr. Newcombe. “I like her!”

I do normally end up seeing a resident when I’m there; that’s what the clinic is for. At the same time, part of the reason I decided to go there is that when I was looking for regular medical care, I had no idea what the fuck was wrong with me. At a medical school, there should always be more than one opinion.

Sometimes, though, I do think the professors take some sick sadistic pleasure in sticking a rookie resident with me.
“Do you have x or y?”
“Yes.”
“Well, which one?!”
“Both. Depends on the hour. Check my record; I have multiple sclerosis.” “Oh.” brow furrow “OHHHHH.”

As I said, I went as a followup after my hospital stay in October.

It was also an opportunity to get my flu shot. I don’t know if there’s some academic group that gives them brownie points for handing them out, but I’ve gotten the flu shot every year since I’ve been going there. Magically, I’ve not gotten the flu. It’s like it works or something.

My wife did get the flu last year, so she got hers on the last trip, too.

But the way the clinic works, you’re seen by a resident, then normally the supervising faculty member, like Grant or Newman, comes in to check over whatever the resident did.

Occasionally, they’ll change things. This past spring, I managed to fall getting off the bus. Validating gravity’s function – it’s one of the things those of us with perpetually-numb feet and vertigo issues do. The resident wanted to send me for a bunch of X-Rays; the faculty supervisor came and checked me out, and decided against it.

Yes, I was sore for a long time, but I’ve recovered. Lasting soreness implies I’m getting old or something.

Monday, I’m going up to see if I might be an appropriate candidate for studies at Georgetown.

I did a study on some thing that didn’t work, previously. This failure pretty much made me swear off serving as a test subject, but I am intrigued by this, and think Georgetown might be one of the places on the East Coast where they might try it. I also have zero reservations about using my own cultured stem cells.

We’ll see how it goes.


Writing early today as I’m home alone; my wife is out shopping.

Reading the entry from 2016 was interesting. Hard to believe it’s been three years.

I did end up in the greater DC area courtesy my wife. Though she probably ended up doing the visit back then free of charge, Dr. Amjad did wind up as my neurologist after I moved north.

(An aside: I do really appreciate what she’s done with me as I cam up to Georgetown kind of on a lark. My thinking was, “is there a medical school somewhere on the Northeast Regional where I could get to the doc and back from Norfolk in one day. New York and Boston were multi-day trips. I might be able to pull off Baltimore, so JHU. Philly or NYC would be tough. Boston almost certainly impossible. I didn’t really even think about GW until I actually moved up here. Searching for places doing interesting MS research, I did find some very interesting stuff at George Washington. Oh! This looks cool! And I can get in and out of GWU pretty easily. I’ll try to find someone there! After three rounds of call transfer roulette, I emailed Dr. A., and she agreed to take me on as a patient. Since then, I’ve actually moved my infusions to Georgetown. Yes, there have been some oddities getting in and out, and with scheduling, but I have nothing but nice things to say about the nursing staff at the CRU.)

So, last visit? I think it probably would have been to the CRU for an infusion. I get those every five weeks these days. It could also have been my head doc, who I see about every two weeks.

If it was the infusion, it went pretty smoothly, although there was some strangeness with the check-in.

If it was Dr. V., it would have been after my second night in my new place. Still takes a long time to get to her place, but it’s certainly not as expensive.

I need to find a new PCP and dentist. I really liked the folks at EVMS (where I have links to a couple of the docs who cared for me there….and this was before the neo-Byrd Organization‘s poster child photo as a Klamsman, or in blackface came out….

So, lots of docs, although fewer visits the past couple of years. I think they’ve started to figure out WTF is wrong with me.

I cannot imagine that I would have gone another 20+ years with various docs not knowing; my symptoms have increased so much that it’s impossible to hide anymore.

At this point, though, I don’t have many reservations. Do whatever you want to me. Experiment on me if others might benefit. If I die, whatever.

And, see, that touches on some of the things I’ve been working on with Dr. V. I have a somewhat-reckless disregard for personal safety lately. What can you do to hurt me? I can’t seem to really do it to myself. Maybe someone can.

And now I’m stopping.

Twenty-two

Write a letter to your 13 year old {sic} self. (reach-back to 2013)

Dear Me,

I think you’re probably seeing that things are changing rapidly. You’re living there in a place that’ll look absolutely nothing like you’re accustomed to.

Don’t take “we think you’ve got mono” as an answer when it comes to medical stuff. You’re not a ladies’ man, and you really will never be. But what you’re going through is something else, entirely. When they finally figure it out, when you’re 30, things will make a lot more sense. No, I’m not going to tell you what it is, because it was a very dire diagnosis back then. It probably isn’t going to kill you, which probably would have been something you’d have been told were you diagnosed now.

You will marry. I won’t tell you much about her, as she’s very young right now. But you’ll feel differently about her than you ever thought possible.

Stick around with the Saints and Royals. Good things will come, though it may seem very bleak for a long time.

A character currently portrayed by Phil Hartman on Saturday Night Live will end up as President. The election will surprise lots of people, but it’s not the world-ending catastrophe that some people say it will be. The SNL actor’s career is cut very short, but I won’t tell you why.

Brush your teeth. Just say, “no.” Avoid alcohol and tobacco.

Some day Informer will be a tool of ridicule; he won’t have another hit.


Not a lot more to add to this. It did get things moving thought-wise, though, so not a bad prompt.

How do I tell myself a few things to look out for, without telling the full story? Donald Trump is going to be President, and Phil Hartman is going to get murdered in bed by the crazy blonde he’d married.

I do hope I’ll be able to write in the future.

Twenty-one

What are your Thanksgiving plans?

We are headed back to Tidewater, and my in-laws’ place. My mother is coming over for dinner.

I’m supposed to be cooking mashed potatoes. For whatever reason, my mother thinks I’m an expert there.

((travel bits deleted))

I’m looking forward to football and food. Pretty much the same as every year. Would I prefer not having to travel? You bet. Am I kind of dreading the car and train trips? *nod*

Thinking about it is making me hungry, however.

One of the podcasts I was listening to was talking about rumors of cutting off the Lions’ home game.

No.

Fuck that.

The Lions started Thanksgiving football, and there should always be a game in Detroit.

Twenty

Write about an experience that changed a long held belief you had. (reach-back to 2013)


From November 22, 2013:

“Don’t ever change.” Such an inscription is probably scribbled inside your school yearbooks. But letting a single event change you, your beliefs, doesn’t make any sense to me. Isn’t one of the signs of terminal adulthood that you lose your snap judgement?

I’ve changed my mind on several different “major” issues as I’ve aged. 22 year-old me probably would think mid-30s me is pretty lame. Maybe I’m just an old conformist.

(No, I was never a goth kid. Wouldn’t have been able to pull that one off, either.)

That said, I understand there’s situations where acting against my original intention is the correct thing to do. “Steer into the skid.” Another thing many young people won’t understand with the ubiquity of front-wheel drive. (Though I suppose it’s true on a bicycle, too. I could ask, but it’d require more than conversation in passing. And how do I avoid the evangelistic sermon? Riding a bike is probably more perilous for me than driving a car. With my vision the way it is, I do neither.)


Back to this after I got distracted by a work-type thing. Then, once again, my work phone was ringing.

I’m not sure what I was thinking when I kind of pushed this one away six years ago. Maybe I was afraid to say.

Now, though, I am willing to admit I was wrong, and change my perspective when presented with new evidence.

Sometimes I’ll find myself coming around to a position I would have never thought I’d hold.

The two things that come immediately to mind are abortion and capitol punishment. I used to be kind of okay with the former, and resigned to the latter. Today, I find myself opposed to both.

No, it’s not a religious thing; I still don’t go to church. But the positions I’ve taken are certainly influenced by the Church’s teachings. For abortion, there’s ways you can keep from forming babby if you want to make sure you don’t do that. For killing people, it’s just that I think it’s a power the state should never have.

The steering-in-to-a-skid thing was really more about what people are accustomed to doing. Professionally, I’ve seen User Acceptance Testing fail because people didn’t want to update documentation. There’s four places where the user is instructed to enter data. There’d better be four places in the next version, even if two of those four aren’t actually needed anymore. But they’re still there to keep the documentation correct. *eyeroll*

I could probably tie these things back to common core tenets. The whole don’t-kill-people is a controversial one, sure.

*yawn*

Two days this week. Three the next. I am so tired.