Author: sean

I got all screwed up on my numbering the past two days. Fixed, I think.

But the prompt I wrote about was about dreams.

Ooh. I wish i’d written more about those. Had kind of a long aside with the woman from the prescription service yesterday.

The folks I’m dealing with for the mental aspects of my disease. I think they’re curious about doing some of the more esoteric substances to see what’d happen to someone wiht a scarred brain.

I can’t do that, though. Restrictions from both my and my wife’s work.

Do I have even the mildest curiosity about tripping balls?

I’d be lying if I said that there isn’t a little intrigue.

Would I wanna go full Aaron Rodgers?

No. I still really don’t wanna puke. Ever.

But there is that mild curiosity about losing control. It fades when I think about the other things where I don’t have control courtesy my condition, but….

Also goes to the things where people felt lit it was okay to lie to the public in hte name of safety.

If you take this substance, you will either go crazy or die.

If you have unsafe sex, you will get AIDS and die.

A coupler of years ago, it was COVID.

At this point in time, I’m sick of being told to be scared.

Things, while settling some, are still in a tizzy at work.

Appropriately, aampling from a previous NoJoMo:

Describe a typical day for you at work. You can go total Peter Gibbons on this one.

I send a good morning email to my bosses letting them know I’m working.

I check in on the agency’s reporting site.

I check the systems connected to what I’m running.

I clean up email after making sure everything is okay.

Then, depending on the day, I start in on my panoply of meetings. Generally, two nights per week, I do preventative maintenance on systems. That typically takes about 90 minutes.

Not terribly fascinating, but it’s kind of my routine.

With telemedicine, I often have medical appointments here and there.

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Not very interesting.

So. What else? Things seem to be kinda calm, though I’m in a bit of an information void with the changes to work.

I’m tired, now hitting that five-week mark since the last Tysabri infusion.

Generally, when I’m not on a call, I’m listening to either a podcast, or news.

My mental health might be better if I cut some of it out.

But it’s kind of what I’ve done my entire adult life.

Recycling again from when I started these summer streaks.

Have you ever had to re-learn something that used to be second nature?

God, I feel like this is a nearly every day in my current role. I’m runnning very old software on very old hardware.

Have I dived into it? Um.

Not really.

For much the same reason I am not going to relearn the art of roasting coffee beans. Or working a timing light on a car engine. (Please excuse the tired appeals to food or cars, but that’s what immediately came to mind….)

Things move forward, and I’m not wed to doing things one single way.

It’s taking everything to keep from self-deprecating there.

If you hitch yourself to the winning horse, good for you.

Whether or nor I’m correct is a bit of a curiousity, but let me do what I wasnt tod to. I’ll pay your the same respect.

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Yeah, I’m really not feeling like writing a lot more on that.

Productive day today, but I’m feeling tired today.

Still am very curious about how I’ll feel after the new shots. While the Tysabri buzz declined the longer I was on it, I did appreciate the bit of a boost it gave me on a regular basis.

We shall see.

I peeked around my unfinished/unsaved entries.

I’d started this one, with the working title of “You Will Fix This“:

The title could be my general message on several things the past few days.

The things I’m not capable of doing outnumber the ones that I am capable of doing at this point.

As I said, it involved several things. I think one of them I’m still working, but my tone is the same.

I’m sure there’s been times where I was more than a little discourteous since I was diagnosed with MS, but I’ve never set out to, and have never intentiionally screwed anyone over. I can look at my ugly face in the mirror, and be okay with what I’ve done.

I really don’t need to be too reflective in thse, and really ought to find some other things to write about.

*checks 7/23/1999*

Yep. I wrote then. It’s not on full-display for myriad reasons.

From this day in 2001:

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So Maybe I’ve Missed Something….
….but I’m not quite sure what that might be. I haven’t figured out if I got a signal. Kiss me, maybe?

Art Bell is still not back. It’s driving me nuts.

Anyway, now I’m racking my brains, trying to figure out what other people are seeing that maybe I’m not. I believe that’s “Bull in a China Shop,” syndrome. Or like when you’ve got spinich in your teeth. Something like that. But I’m just guessing here, because I really can’t remember. And yes, I do want to remember.

It also shows that maybe I’m right with what I said earlier, that I’m consumed by other things. “Oh, it’ll happen when you’re not looking.” But is it happening and I’m just not paying attention at all? I don’t think so.

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Reflective even back then. Perhaps overly-so.

My overall conclusion, though, was correct, I suppose. Half a decade later, I was newly-involved with the woman who I’m still with.

Don’t think about how she was fifteen when you wrote that.

Don’t think about how she was fifteen when you wrote that.

Don’t think about how she was fifteen when you wrote that.

Oops.

Or if you live in a place that does its dates DDMMYYY, pi day.

People actually get in long debates about this, especially those who’ve memorized pi to the umpteenth decimal point.

It’s an approximation.

People get really sensitive when you take on things they hold dear.

Maybe I’m channeling my emotions surrounding getting blocked by the LP National Chair, but when you continue to do the wrong things, I’m going to call you on your shit

They talk about things like a national divorce, but won’t cut loose state parties who do things like this.

I’d rather spend the rest of my life in New Jersey than give a dime to LPNH.

You broke it, you bought it. Consequences exist for a reason, and if you’re a public person, blocking people who call you on your shit ensure that you’ll never improve.

So. What else?

Waiting on my MS meds to be delivered. Both the generic pills, as well as the ew shots. All three of my initial does will be during this streak. I’ve been looking to see what side-effects I should expect from this stuff, but it seems to actually be better than some of the stuff I’ve taken in the past.

Using it does seem to be very straightforward. Place the thing, hit the button, wait for the indicator to turn green, remove. They’re not individual needles, so no sharps container to deal with, at least.

I’ve kind of given up on my one-year-ago news site. Just don’t have the energy to devote, but I guess I can do that sort of thing during thi sstreak, too.

STFW for news fro July 22, 2022, and I get this.

I never understood why people paid attention to him, anyway.

But did you see him totally school Bill O’Reilly?

Yeah, I’m not caring.

Did O’Reilly gross more viewers that night than all of the big cable news outlets did combined on a typical night this past week?

Yeah, I’m gonna guess that he did.

Nobody is watching.

I’m writing again this summer despite urgest from medical professionals not to do that.

Part of what I’m hitting on, and this really started as I was languishing in a casino hotel in Biloxi, is a track of thinki9ng about accuracy in language.

I subscribe to several email lists the focus on vocabulary. I don’t know that I can count the number of times where I’ve written something, then, on re-reading, changing a single word really doubles the effect of the sentence; one word makes a big difference.

Part of that was a flashback to something I’d posted in the Virginian Pilot comments years ago, where I initially typed that I can sympathize with an article subject. No, sympany wasn’t really the correct word. Yes, I was sympathetic, but I was also empathetic, as the subject’s conditions were very similar to the ones I experience with MS. .

No, I don’t understand exactly what the subject is experiencing. But I do understand better than someone who doesn’t experience the same symptoms.

So I started down on the number of human emotions. Is there a defined number? Hmm. Yeah, Berkeley has a list. Discuss with a psychologist, and the take is different. Yes, the words are different, but they’re really the same emotions. Is there a big difference between nervousness and general anxiety?

I don'[t know, and that’s caused me to really rethink what I’m doing, in this binge.

Things have calmed down a lot, I think, in the past couple of weeks, professionally. Medically, on the other hand, I’m still in a bit of a state of flux. I don’t know if I wrote about my anxiety about starting Tysabri back in 2015, but I was scared to start it.

After being on it for a while, I’d gotten accustomed to the medication. The highs and lows were certainly less-pronounced than they were early in my time on it, and I wasn’t worried about dying every time I took it.

Some of the dangers that had me so nervous at the start were surrounding PML.

They fiddled around with the dosing schedules, etc., but THE SCIENCE, (and hattip to Dr. Fauci at Georgetown…). They instituted an hour-long post-infusion observation period. They implemented every-four-month blood tests to see if you had antibodies to JCV, the observation period was cut to 30 minutes, then they were going to start letting it be administered via home infusion.

I was scheduled to start home infusion with my next infusion on 1 August. The weekend before my last infusion, I went to a facility for a JCV test. Though I didn’t have an appointment, and was there on a walk-in, it was pretty uneventful. Tuesday I went for my last Tysabri infusion at the place I’d been going for about a year and a half. Nothing terribly interesting to report, though I was noting some vision weirdness here and there.

But I was preparing to travel down to see my mother, a bit concerned about my employment status, but ready to travel and do the things I’d intended to do on vacation.

I got the information back on the blood test a week after the test, and three days after the Tysabri infusion.

Positive.

Oh fuck.

What to do now? (And please excuse the foul language; I’m trying to watch my use of worty dirds….I think that you can actually be more effective without using “gutter language.”)

I got in touch with my neurologist, and scheduled an appointment for when I got back from Biloxi. My next DMT is Kesympta.

We’ll see where it goes.

I am feeling better than I was before I went to Biloxi, but I’m still not okay. My eyes are weird. I’m having trouble sleeping.

I need to get an MRI to see if any damage has happened.

Thankfully, it seems like the possible work issues are resolved. We’ll see.

But if there’s something you’d like to see me write about, please email.