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.

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.

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.