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*

Desire for simplicity

There’s a lot of days when I wish I could live like a normal human. I’d probably been going too hard, and my body seriously revolted against that a couple of weeks ago. As I’ve tried to get back on an even keel, I’ve struggled getting things right. Obviously, I did something wrong, because I’m out of work again, today, with muscles randomly cramping up.

But, with that, I decided not to subject myself to the unpleasantness that is work today. After the problems I had a few weeks ago, it’s better that I just not risk things when I’m having problems.

So, what to do…. Well, exciting stuff like 401K rollovers. And long for having a NetBSD environment to play around with again. This sums it up pretty well. Since 757.org went to the dark side that is loonix, I’ve been missing it.

Pfft.

What else can I do until I can get home this afternoon?

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.

November is almost here

Obviously, this past winter was more than a little tumultuous, between getting laid off by the four-letter company, dealing with a separate financial matter, being bummed out about Shady Grove Marketplace closing, and an MS exacerbation, I basically stopped writing for awhile. During this hectic time, the place where I’d been writing since 1999 shut down for good.

Since 2010, I’d been writing every single day of November, and continued that last year, despite the site’s death rattles. Unfortunately, I haven’t latched onto something for next month yet.

This year, I want to write. I will write. But what to write about? This is the question.

If I was lazy, I’d recycle prompts from the past four years. Instead, I’m looking for inspiration from my, to steak a phrase from Katy, nonexistent readers.

Hmmmmm.

Cruel Summer

No, Sarah didn’t leave me here on my own.

But I am incredibly frustrated with many things right now.

  1. Health.  I’ve been going at Mach five since is started this new job, and the wear is starting to show.  How do you quantify the value of compensation that involves merely getting to a computer in the morning?  I’m trying to do the things I need to do to be healthy, but just getting through the week can be a lot of work sometimes.  I don’t see very well.  I don’t walk very well.  I need to use the bathroom a lot.  I can’t drive anymore (And, yes, the ‘Stang is still for sale….).  These are things that come along with my condition.  Do I still have things to offer?  Sure, which brings me to….
  2. Work.  I haven’t written much about what I’m doing lately, but I feel like the people I’m answering to are only doing the bare minimum to get by.  I’m also expected to think that’s peachy-keen.  Well, I don’t, and never will. I understand working in haste.  I also understand delivering products that don’t even approach adequacy, much less quality. Some of my tweets the past couple of months may have seemed obtuse because of that.  Doing bad work quickly doesn’t excuse the immorality that is doing bad work just for a paycheck.  And, again, if you spend a lot of time splitting hairs between moral and ethical conduct, you likely understand, or care about, neither.  I want the opportunity to do good work.  I hope there’s some employer out there who cares more about that than the extra letters I, or someone else, bought to put after my name.  (Hint:  Yes, if you’re looking for my services, I’m listening….And I will never give the bare minimum, even if that’s what you’re giving me in return.)
  3. Speaking of more letters, I don’t know what I should do about potentially going back to school.  Sarah is excited to do it;  I can’t say I share her enthusiasm.  I’m thrilled for her, of course, but I really don’t know how much use I’d get out of going back.  For now, I’m going to worry about helping her get where she wants to be, then I’ll look again.
  4. 757.org is functioning better than it has in a long, long time.  I really don’t have an idea exactly what its future is, but I’m happy with where I’ve gotten it this year.  A lot of the lingering problems relate to stale PHP around in various places.  *sigh*

And that’s where I’m going to shut up for now.  If you’re looking to get in touch with me, my phone number hasn’t changed since 1999.  I’m still available via E-Mail at sean@757.org.  There’s much gluttony to entertain after this shitty-ass summer.

Giving 340%

Because 110% is lame, cliche, insufficient.  (And 340 is what I came up with for my current work “utilization.”  In quotes, because I’ve still yet to hear a compelling argument for use of the word, “utilize.”)

I haven’t worked today.  I’ve barely glanced at E-Mail.  This will be the case next weekend, too, when I actually take a day of leave for the first time since [redacted] laid me off.

So, what am I doing?

1.  Fighting this trolls from [redacted], working for [redacted].  Jesus might have thrown the money changers from the temple;  I wonder what layer of Hell collections agents are in after they die.  I’m not going to talk too much about that here, now.  I may ramble on about it later.  I mentioned, in passing, to one of the agents that I was starting to think there wasn’t an option for me other than to lawyer up.  I’m thankful one of my professors from XKCD.edu remembered me when I contacted him back in January after [redacted] laid me off.  If I have to drop him a few bills to get this taken care of, so be it.  (Tip of the hat, Mr. Messier.)

2.  ISC BIND is still a PITA.  But I think I got it fixed, finally, on Icecube.  My v6 resolution will work again, even if the v4 to home needs updating again.  Hopefully, the SiXXS PoP in Ashburn stays up.  *sigh*  Cawcks may be my “friend in the digital age,” but they sure haven’t caught up with non-deprecated protocols.  (And, yes, I know I need to buy a DOCSIS3 modem, but even if I did, I wouldn’t get a routable v6 address yet.)

3.  Rumors on the Internets, and from Sarah, Ethan, are that Enferex is back in Tidewater on holiday.  (Do the Aussies use that as dingoer lingo?)  I hope I get a chance to catch up.

4.  Music tidying is tedious.  See the “digital cobwebs” entry a few weeks back.  I still haven’t gotten my library where I want it, but it’s closer.

5.  The new Facebook plugin setup/sync is less onerous than the one I’d tried before (or I’m just less stupid).  Comments work again.  That said, you can register, and comment via the native WordPress stuff.  I just have to approve them.

6.  Tecfidera is going.  Over the past week, I’ve had flashes of near-adequacy on my vision.  They’re still pretty short-lived, unfortunately.  On the bright side, I’ve seen things on my iPhone that I haven’t seen before.

7.  HRT never called me back.  Looks like they’re going to shut down the Dominion Tower bus stop next week.  This is a problem for me.  I’m not saying I don’t understand, though.  I don’t think I’ve ever seen more than two people get on there, four people on the bus at one time.

8.  I’m rambling.  I probably ought to quit writing now.  *yawn*

More Lesions, Less Leisure

Maybe.

I got my MRI results back this afternoon.  One new active lesion, but barely any progression in the existing ones.  Some brain volume decrease, but that’s expected.

Brain stem looks normal, as does blood flow in the brain.

Still sort of tracking for the Tecfidera, but Tysabri is still an option.  I will let EVMS and Dr. Rice argue it out.  Kind that whole practicing medicine thing.

I have gotten worse since I went off the Copaxone (and on to the Rebif).

Not enjoying being in an office, again, every day.  But it is what it is.

Anybody wanna buy a Mustang?