Category: Scarred Brain murmurings

Settling Down

Reply to a note left for me on my last entry:

No, it was me going home for Thanksgiving.  I really kind of was having a breakdown when I wrote twenty-nine.  But I’ve kind of been cloistering at home the past couple of weeks, trying to get my head back together.

I think it worked, but I am very much in need of my next Tysabri infusion.  Tuesday can’t get here soon enough.  Ugh.

I did the trip, and ended up on the train thinking my psychologist didn’t want to see me anymore, and I should blow up just about everything in my life.

So I emailed her.

For whatever reason, I convinced myself she was trying to get rid of me as a patient.

No, really.

We discussed it, and it might come down to my life as a kid.  Things suck?  Okay, just hang on for a few more months, and you’ll be able to start anew, somewhere else.

That also might speak to my longtime urge to always build from scratch, and nothing is, or maybe, nothing should ever be permanent.

I think that the resistance to that might be rooted in the desire to improve on something previously good.  Or perfect.

Speaks to my admiration of certain sports figures.  Will anyone ever match Brett Favre’s interception record?  Would anyone ever be allowed to play long enough to break it?

And that speaks to my subtitle — Everything Gets Deleted, Eventually.

That is a unprofessionalism!

Title is the exasperated utterance from a shady recruiter who called back a few minutes after I’d told him that, no, I wouldn’t be working for him, or his shady client.

Let’s recap the timeline.

Monday I got a call from a recruiter about a position not terribly far from me.

I told him, we’ll call him “Recruiter A,” my two requirements:

  1. I am not doing the contract-to-hire (or not) thing anymore, and;
  2. I am finished with work for the Federal Government that’s not on the General Schedule (so as a Federal employee)

I’ve told my current boss that my current role is the last one I will take in support of government as a civilian. Unless I’m laid off, I will. (And if I am laid off, I will see about returning to my last position, as I really loved that organization….)

I listened to his spiel on how that, no, this wasn’t a government gig, and it was in support of a commercial one who weren’t doing government work. (Given that the company is German, that I said, “spiel” is mildly amusing….) I finally got him off the phone after I told him I’d email him my CV when I got home.

I got home Tuesday night, and was a bit exhausted; travel takes a lot out of me these days.

Wednesday, I sent Recruiter A my latest Ops CV. Almost simultaneously, I got a phone call from someone I thought was Recruiter A (we’ll call him “Recruiter B”). The area code, and first digit of the numbers were exactly the same. The voices and accents were nearly identical.

I told him that I’d just sent him my CV. Recruiter B seemed surprised about this, and wanted to know information about my experience, which I thought I’d already given (to Recruiter A).

Recruiter B offered even less information on the position than Recruiter A, and was rather curt when I didn’t express the excitement he thought I ought to have.

We went talked about salary, the same discussion I’d had with Recruiter A on Monday. The salary range was unchanged from the discussion I’d had on Monday. The salary was less than I wanted, but still acceptable for something outside government. After going back-and-forth, I finally assented to him submitting my profile to the client.

About five minutes later, still fuming over his tone, I sent an email to Recruiter A, thinking he was the one I just got off the phone with, saying that, no, I didn’t want to move forward.

Recruiter A called me back in tears, saying that, no, he hadn’t just called me. Uh, so with whom did I just speak?

Regardless, I wasn’t interested anymore.

Thursday I got a call from Recruiter B. Uh, I thought I told you I wasn’t interested yesterday? I’m still not interested. I don’t care that you’ve already submitted me to your client; I won’t be working there.

THIS IS A UNPROFESSIONALISM!

So are you.

And I would never work for a company that hired you.

But my bigger message, aligning with what I wrote a few months ago, for so many things you can leave. I’m not playing this game anymore. Despite the newly-elected politicians’ desires to control me, I choose to be free.

I am not going to work for a company that doesn’t provide benefits. Even if Medicaid For All (yes, it’s Medicaid; some doctors will refuse to accept the artificially-low reimbursement rates, and will just choose to quit), I’m not doing this anymore. If you want to have full control of my time and effort, you’re going to give me paid time off, paid holidays, and a 401K match. No, I’m not going to do it temporarily. I refuse.

I do kind of feel like I should call and apologize to the guy I made cry. Maybe I will.

Update: I did call,a nd said pretty much what I said here.

I am not going to do this anymore.

Feeding My Compulsions

Yesterday, I pretty much wrote my prompts for next month.

Yes, my doctor says it’s a compulsion, but I think it’s okay. I did resist doing it over the summer this year, so that’s a start.

I plucked a few entries from my past I’m going to revisit for this year.

Below is one of them.

One of the things I am surprised by, however, is that some of this stuff isn’t as bad as I thought it’d be.

I was in a bad place there for a few years.

Certainly I’d be justified in pointing fingers, but it’s over now.

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

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.

Aware of what you can’t see

This week is supposed to be about raising awareness of multiple sclerosis.

I really hate that euphemism, “raising awareness.” Is anyone really not aware of cancer? It’s quite possibly going to kill you, eventually. Yes, you are going to die, and chances are it’ll be cancer or cardiovascular disease.

Is anyone really not aware of male pattern baldness? Maybe I give the common man too much credit; I refuse to assume he’s a complete idiot. Makes me a bad nanny-state politician.

The tens of you who read this may or may not be aware that a) there is a condition called multiple sclerosis, and b) I have it.

You would not know I have it just by looking at me. One of the most common things that people say to me, upon hearing that I have it is the dreaded, “you look so good!” At first glance, if you don’t see my often present cane, I do look better physically than I did not terribly long ago. Although I’ve lost some hair, and have more wrinkles, I’m a lot skinnier than I was not terribly long ago.

I probably weigh about what I did when I graduated high school. How many other folks in their mid-thirties can say that? Otherwise, it’s visually tough to tell I’m afflicted — unless you can see my bruised elbows. In addition to the scar I have on my right elbow from a childhood baseball incident (batting left-handed, and took a pitch right to the elbow), I often have bruises on my elbows from various collisions with things in everyday life. I thought about this as I got the shower wall in the other morning..

This article touches on many of them. I’ll run through the ones that affect me the most, then go try to go back to sleep.

Pain
I’m trying to remember the last day when I didn’t have some sort of physical pain, and honestly, cannot. When I was younger, it was largely attributable to overexertion, and poor dental care. Both of those were partially my own damn fault. I worked out too hard. I didn’t go get those wisdom teeth pulled when I should have, etc..

Towards the end of college, I started having the odd body aches nearly every day. I attributed it to living in perpetual jetlag; for years, I lived in both day and night worlds. Student or entrepreneur during the day, radio news guy at night. In 2005, I signed on with a company that allowed me to leave much of that lifestyle behind. but I still ran too hard out of habit.

Fatigue and Sleep Issues
See above. I think the last time I would have been on a somewhat-normal sleep cycle would have been early in college. From about age nineteen to 25, I pretty much existed on various stimulants (caffeine, nicotine, etc.). Four hours of sleep here, two hours there, a 30 minute catnap, etc..

The concept of going to sleep at 2200, and waking at 0600 was completely foreign to me. In many ways, it still is, because I really have trouble sleeping more than a few hours at a time. Even after a few hours’ sleep, I’m not “rested.”

Since diagnosis, I’ve not gotten better with that. The last two years’ employment drama haven’t helped. Right now, I often struggle through a full workday, go back to my mom’s house where I’m staying during the workweek, sleep for a couple of hours, wake up, have dinner, talk to my wife, and try to sleep again until it’s time to head in to the office in the morning. Not fun..

I’ve tried backing off on the stimulants and depressants, but it hasn’t helped all that much.. I’m tired nearly all the time, and that makes my vision worse.

Vision Problems
I have them big time since around the time I was diagnosed. My vision has gotten worse. The last time I went to an opthamologist, I was at about 20/50 combined, corrected. I was correctable to 20/60 in my right eye, and not correctable better than 20/2000 in my left eye. (For reference, not correctable better than 20/200 combined is legally blind.)

My visual decline has been ongoing, but really accelerated the last few years. I don’t see well enough to feel safe to drive a car. I miss lots of things. Reading the ticker on the TV? Yeah, good luck with that. Failing to recognize someone I’ve known for a long time? Guilty.A sensation like I’ve just had a camera flash me all the time? Got that, too.

I could rattle on for pages about my various maladies, but you’d never be able to see them for yourselves. So, how do I raise your awareness? I can’t. All I can do is tell you my story, my situation, and hope you’ll believe me. I know when I was younger, I probably wouldn’t have believed me, because I couldn’t experience these things, myself. And, of course, I look so good! *sigh*

Aware of what you can't see

This week is supposed to be about raising awareness of multiple sclerosis.
I really hate that euphemism, “raising awareness.” Is anyone really not aware of cancer? It’s quite possibly going to kill you, eventually. Yes, you are going to die, and chances are it’ll be cancer or cardiovascular disease.
Is anyone really not aware of male pattern baldness? Maybe I give the common man too much credit; I refuse to assume he’s a complete idiot. Makes me a bad nanny-state politician.
The tens of you who read this may or may not be aware that a) there is a condition called multiple sclerosis, and b) I have it.
You would not know I have it just by looking at me. One of the most common things that people say to me, upon hearing that I have it is the dreaded, “you look so good!” At first glance, if you don’t see my often present cane, I do look better physically than I did not terribly long ago. Although I’ve lost some hair, and have more wrinkles, I’m a lot skinnier than I was not terribly long ago.
I probably weigh about what I did when I graduated high school. How many other folks in their mid-thirties can say that? Otherwise, it’s visually tough to tell I’m afflicted — unless you can see my bruised elbows. In addition to the scar I have on my right elbow from a childhood baseball incident (batting left-handed, and took a pitch right to the elbow), I often have bruises on my elbows from various collisions with things in everyday life. I thought about this as I got the shower wall in the other morning..
This article touches on many of them. I’ll run through the ones that affect me the most, then go try to go back to sleep.
Pain
I’m trying to remember the last day when I didn’t have some sort of physical pain, and honestly, cannot. When I was younger, it was largely attributable to overexertion, and poor dental care. Both of those were partially my own damn fault. I worked out too hard. I didn’t go get those wisdom teeth pulled when I should have, etc..
Towards the end of college, I started having the odd body aches nearly every day. I attributed it to living in perpetual jetlag; for years, I lived in both day and night worlds. Student or entrepreneur during the day, radio news guy at night. In 2005, I signed on with a company that allowed me to leave much of that lifestyle behind. but I still ran too hard out of habit.
Fatigue and Sleep Issues
See above. I think the last time I would have been on a somewhat-normal sleep cycle would have been early in college. From about age nineteen to 25, I pretty much existed on various stimulants (caffeine, nicotine, etc.). Four hours of sleep here, two hours there, a 30 minute catnap, etc..
The concept of going to sleep at 2200, and waking at 0600 was completely foreign to me. In many ways, it still is, because I really have trouble sleeping more than a few hours at a time. Even after a few hours’ sleep, I’m not “rested.”
Since diagnosis, I’ve not gotten better with that. The last two years’ employment drama haven’t helped. Right now, I often struggle through a full workday, go back to my mom’s house where I’m staying during the workweek, sleep for a couple of hours, wake up, have dinner, talk to my wife, and try to sleep again until it’s time to head in to the office in the morning. Not fun..
I’ve tried backing off on the stimulants and depressants, but it hasn’t helped all that much.. I’m tired nearly all the time, and that makes my vision worse.
Vision Problems
I have them big time since around the time I was diagnosed. My vision has gotten worse. The last time I went to an opthamologist, I was at about 20/50 combined, corrected. I was correctable to 20/60 in my right eye, and not correctable better than 20/2000 in my left eye. (For reference, not correctable better than 20/200 combined is legally blind.)
My visual decline has been ongoing, but really accelerated the last few years. I don’t see well enough to feel safe to drive a car. I miss lots of things. Reading the ticker on the TV? Yeah, good luck with that. Failing to recognize someone I’ve known for a long time? Guilty.A sensation like I’ve just had a camera flash me all the time? Got that, too.
I could rattle on for pages about my various maladies, but you’d never be able to see them for yourselves. So, how do I raise your awareness? I can’t. All I can do is tell you my story, my situation, and hope you’ll believe me. I know when I was younger, I probably wouldn’t have believed me, because I couldn’t experience these things, myself. And, of course, I look so good! *sigh*

Shmoocon 2015 from afar

I watched this over the stream.

I find it interesting that location services, even when the user says to turn them off, are often still transmitted. I don’t know that there’s an easy way to fix this if the vendors still allow location data to be transmitted even after the user says to turn it off.

Such a feature would be rather easy for Apple to add to the API, but it’d be up to the folks who police the app store to enforce use of it. It might slow application approval, since someone would have to verify that the application is using the correct faculty, etc..

In the disaster that is Android, there’d be no way of enforcing it. With things that I’ve read that say the spyware infection rate being somewhere north of 70% on Android devices, it might well be impossible.

I understand the paranoia, but I don’t share it. I’m okay with my location being tracked. Maybe when I was young and healthy, I would have cared more about being able to just disappear, but I don’t now.

Secrecy and surprise really don’t afford you that much protection if you’re still a lumbering target. I’ll eschew my normal allusions to football, but they’re very appropriate.

I am not at Shmoocon this year, because I couldn’t get a ticket. I am watching from home via the stream. Do with that what you will.

An Affordable Nightmare

I’ve basically not worked this week.

I’m having some issues related to my condition that have been tough. Since May 2013, I’d been taking Tecfidera. No real concern, though, as my neurologist was thinking about switching me to one of the infusion medications.

Last fall, I didn’t enroll in my company’s HMO offerings for a variety of reasons. Naturally, just after the open enrollment period, we received notice our private policy wouldn’t be offered for 2015. Somewhat reluctantly, my wife and I chose a plan offered on the Federal Exchange with a company we’d previously used (and had difficulties with).

We went with the plan largely because we knew that the specialists I’d been seeing accepted it.

My wife saw her PCP last week on the new insurance without any problems.

This week, I had two appointments with specialists scheduled. One of them was with the neurologist who’d been treating my MS since just after diagnosis, the other with a specialist I’d been seeing on referral from the neurologist (albeit, this time to address a problem discovered in a routine test as my PCP; since there was an existing relationship, I figured I’d let them handle it). Friday, tomorrow, I had an appointment scheduled with my neurologist to discuss changes in my treatment.

I saw specialist two late last year. He wanted to run some tests, but agreed it’d probably be better to wait until my new policy started.

Early in the week, I got a call from the second specialist saying they didn’t have my insurance information. Since I didn’t have my card on me at the moment (I’d given it to my wife when she went to pick up a prescription for me), I told the caller the company, and that I’d bring my card with my for my appointment on Wednesday.

So, yesterday we set out to my appointment. After someone rudely cut in front of us, we finally got to the check-in. Hand over my card. Paraphrasing —
“Did you get this from the Exchange?”
“Yes. The woman I spoke to said that you accept this company.”
“We do, but not the plans from the exchange.”

After a bit of back-and-forth about the cost of the appointment as an out-of-network patient, we left.

My wife reminded me that I should call my neurologist, with whom I had an appointment scheduled Friday. They don’t accept the exchange program, either.

Later that afternoon, while looking for replacement specialists on the insurer’s site, I found a doctor at my neurologist’s practice listed. Again, paraphrasing —

“Which doctor?”
“Dr. S.K.”
“Please hold….” “Sir, we don’t accept that insurance at all.”

So, cancel that appointment, too, and see the PCP Friday to get referrals to new specialists.

Meanwhile, I can’t work, and none of my conditions is being treated.

A big “thank you” to the politicians responsible for this.

Distraction-Free Writing

That’s what the latest round of updates to WordPress promised me. Still, I’ll probably be just as bad at writing as I have been lately.

It’s been a busy month. After the past two weeks of work, I’ve had absolutely no energy left for doing things on the weekend. I’m hoping for some major changes come January, but it remains to be seen.

Today, I explained some basic engineering practice at work. A bit shocked that I have to do this sort of thing, really. Maybe I haven’t been in a bubble penetrated only occasionally by “sales engineers.” I’m okay with this. My posterior-kissing skills are almost as bad as my eyesight at this point. Maybe that makes me a bad person.

I’ve also completely forgotten what I wanted to write about. I’m watching football, which is doubly-sad considering the Saints’ performance yesterday. As bad as the CoonasstroSuperdome looked after Katrina, I guess it could be the man-made disaster that is Detroit.

In a way, though, I feel like I’ve been dropped into the Silverdome at work. So much went into what’s there, and there’s just zero willingness to actually fix it.

My debate for tomorrow is whether I try to get down to a going-away party for someone who is very important to me. It’d be tough, but I’m inclined to at least make an effort.

Distraction-Free Writing

That’s what the latest round of updates to WordPress promised me. Still, I’ll probably be just as bad at writing as I have been lately.

It’s been a busy month. After the past two weeks of work, I’ve had absolutely no energy left for doing things on the weekend. I’m hoping for some major changes come January, but it remains to be seen.

Today, I explained some basic engineering practice at work. A bit shocked that I have to do this sort of thing, really. Maybe I haven’t been in a bubble penetrated only occasionally by “sales engineers.” I’m okay with this. My posterior-kissing skills are almost as bad as my eyesight at this point. Maybe that makes me a bad person.

I’ve also completely forgotten what I wanted to write about. I’m watching football, which is doubly-sad considering the Saints’ performance yesterday. As bad as the CoonasstroSuperdome looked after Katrina, I guess it could be the man-made disaster that is Detroit.

In a way, though, I feel like I’ve been dropped into the Silverdome at work. So much went into what’s there, and there’s just zero willingness to actually fix it.

My debate for tomorrow is whether I try to get down to a going-away party for someone who is very important to me. It’d be tough, but I’m inclined to at least make an effort.

Sure Happy It’s Thursday

Before TGIF, there’s SHI…Thursday.

The second part of the week has already been very trying, and almost resulted in an impromptu resignation by me midday.

If you ask me a question, at least have the common courtesy to let me finish my answer before you start talking.

So, though I resisted hasty action, my choice is as easy as I’ve ever made.

In other news, start of Hampton Roads IT conventioneering has started anew. Blame the obstinance of the Shmoo people, outrageous speed of ticket sales. While I’d grown to appreciate the wintertime trip to the capitol, it’s clear that they’ve no place for someone like me. That’s okay. There’s good things here, despite my resolution to leave once my wife finishes school.

I am a bit concerned about a few things with this, however, and I wonder if I’ll be able to voice them without sounding confrontational. In short — we probably won’t draw any out-of-towners with something in frosty Hampton or Newport News.

On an unrelated note, perhaps I’m now too comfortable with writing in November, and am seeing it negatively affect my output at other times. I applied for a writing gig last week; they want a writing sample. I’ve been putting off writing it, and am considering withdrawing my interest. It’s not very much money, and I don’t think I’d be missing anything by not being a professional blogger.

I mean, I know my blog sucks. So does yours. The level of suckiness varies, but they all ultimately suck. This potential assignment perhaps sucks less than many, but I’m still skeptical about whether I want it.

Unrelated, but something I’m still proud of — I think I was able to better articulate what I’d like to do with my business. You would think that someone who’d bought a ton of letters after his name could artfully describe things, but the proper application of the techniques the game of minesweeper shows, actually make investment in the letters wasteful. Ironic. Sorta like rain on your wedding day.