^H

On being sick.

I understand why I chose this prompt for this date.  I wrote much of this on the train heading to Washington DC to visit the folks at Georgetown School of Medicine.  I wrote a bit about it recently.

The potential to get some of my life back would be worth getting my femurs drilled and Humira, or chemotherapy.

This is not a condition I’d wish on my worst enemy.  (And if you know who my worst enemy is, please let me know, because I really don’t know who’d that’d be at this point.  There is one individual I’ve dealt with professionally, recently, that I’d just assume never speak to again, but…)

So, I find myself trying to decide what would be the best way to tackle this.

The less-pleasant parts I really don’t feel like relating, but they’re all a part of the overall experience.

The most maddening part, though, is not one of the more disgusting things, honestly.  I really am nearly blind these days.  When I was younger, I’d say that I’d much rather lose my vision than my hearing.  I was working in radio, and there was the big story about the things Rush Limbaugh was going through with his opioid0induced hearing loss.

Obviously, working in radio without being able to hear would be very difficult.  But doing just about anything without decent vision is just as tough.

No, I really can’t see what you’re pointing out.

No, I can’t tell the difference between those colors.  (And this is more than being lectured on the differences among cream, Ivory, and other shades of white.)

Saturday, we took my mother to the football game between her alma mater, and my wife’s school.  Not only did her school not even who up, I couldn’t really see anything that was going on on the field.  Getting up and down to our sets with the stadium steps with no handrails was difficult enough, but…..

It was also rather chilly.  Normally the cold doesn’t bother me much anymore, unless I’m out in it for a long time.

So, not a particularly enjoyable experience.  I think my mom had a good time, though, which is what matters.  She and my wife got to experience the sorts of things I deal with being reliant upon public transportation.  You can get pretty much where you need to go, but it takes a long time.  I guess it took probably about 40 minutes to get from our place to the university;  it’s fifteen by car.

At the same time, it probably cost as much in transit fare as it’d have cost to park near the stadium.    And no need for a long-distance walk.

I can still walk some, sorta.  I’m good for about a block and a half most days.

Trying to get though this is annoying me.  I guess I’ll revert to the list from NMSS.  It might be easier to say which of those more common symptoms I don’t have.

I really don’t have emotional changes or cognitive changes.  The others listed I do have to some extent.

The less common symptoms, really, I only deal with a few.

–cut–

So, the appointment went okay.  I have a prompt for a couple of days in the future to write about it more thoroughly.

At this point, since I’m on the Tysabri, I should stick on that until it quits working, or I test positive for JC Virus.

Who knows.

Initial impression:  They’ve got their stuff together, and I think I’d be happy to be treated there if/when we move up.  It’s probably an older facility, but they’re doing some of the newer interesting research work.  That matters to me.

Much as I appreciate EVMS, MS isn’t a big focus.  If I had diabuatteus /Wilford_Brimley_voice, I’d be interesting.

As I said, I will see what happens.

We are sticking with the same insurance arrangement as this year  Yes, it’s going to cost something like $120/mo. more.  Yes, it’s all after-tax.  But I’m in a strange employment situation, and this is what I have to deal with courtesy the Patient Protection and Affordable Care Act.

That’s probably going to go away with the minor change in government, but I’m sure it’s going to take awhile.

I could probably write more, but I’m tired. My current debate is whether I try to make it in to the office tomorrow. Or work from home. I don’t know.

Okay, I’m supposed to find something I wrote five years ago, and say how things are the same or different.

From NoJoMo 2011:

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NJM Day 15 – 11/15/2011

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1. Using a maximum of 15 songs, what is the playlist of your life so far?

This one is really tough, because my life’s been so damn odd. It’s funny that I’m having trouble answering this one considering the seemingly always-on playlist running through my head.

Probably stems from time spent working in radio….

What I have noticed lately is that certain songs do have that sort of emotional effect on me I once thought impossible….people getting overly emotional about a song. I just didn’t get it when I was younger. I guess I sort of do, now. But more than that, I think I notice the songwriter’s emotions more these days, perhaps appreciate them more.

This is especially true when it comes to relationship emotions. Before I met my wife, I though a lot of the romantic sentiments were hokey; having now felt the same things, I understand.

Since my dad died last year, I’ve been unable to get a full listen in to Love Without End, Amen by George Strait. Pops up on random on iTunes, comes over the radio, whatever, I can’t listen, even all the way to the first chorus.

But, as for what’s describing me now, I have no idea. What I put up with I don’t think is captured perfectly by any one song. I’m tired. There’s songs that capture that, but not tired in the way I’m tired. Not in pain the way I’m in pain.

2. What comes to mind when you hear the term “comfort food?” Share the recipe (if it has a recipe) and why it is your comfort food.

I think most people think of old-fashioned homemade stuff; you’re not going to find a reasonable example at TGIRubilibees. Can I think of a single specific one? No, not right now. So how’s it made? Chances are, the recipe starts with, “first you make a roux…“

3. Aside from money, if you could have anything, but only one more thing than you currently have, what would you get, and why?

A long break. Without pain. Material things mean so little to me these days.

Notes:

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~hugs~ I wish there was a miracle for us. Have you tried that Low Dose Naltrexone therapy? I did, but it didn’t work for me. [Cats Rule] 11/18/2011 2:36:27

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This was one I wrote from prompts. I don’t know, really, that a lot has changed.

I am still tired. Exhausted.

When I wrote that entry five years ago, I was just a few weeks removed from my honeymoon. Yes, there was stress involved with that due to the travel. Even when we were there, we spent a lot of time worrying about getting one place or another. See this. Do that. Visit these people.

Aside from our time actually on the train, maybe we didn’t spend enough time just relaxing as the two of us.

Since then, it’s only gotten worse.

She’s in school. I’m bouncing back-and-forth to doctors’ appointments. On top of really not having enough money to do much of anything.

I’m reminded of Office Space, and the discussion between Peter and Lawrence. What would you do if you were rich enough that you didn’t have to work?

Other than two chicks at the same time, nothing.

Unfortunately, I’m in no position to do that.  In my current role, I don’t even get paid holidays, much less leave and sick leave.

In the job I had five years ago, I got four weeks’ comprehensive leave.  Oh, and I wasn’t going to be paying $700/mo. for health insurance.

I apologize in the turn into curtness, here.  This afternoon’s meeting signaled that my situation is not at all unique.

But it doesn’t mean I should be okay with it, either.

I have my Georgetown appointment recap penciled-in for Thursday.  Maybe by then I’ll have more to say.  Right now, there’s not much.

Let’s start with today’s prompt…

Nervousness. Write about what last made you really nervous.

You know, I don’t really know what makes me nervous anymore. I’ve been through so much, I really don’t know what more there is that could really embarrass me.

There’s things that happen that once would have been a big source of shame that, on account of my condition, I really can’t control. Does my disability make me a bad person? Umm, maybe. Probably me from a decade ago would have been completely unable to understand it, because I did really think there wasn’t much I couldn’t do if I really needed to.

When I left radio in 2005, I was very much at the point where I was saying, “this isn’t working.”

Would I end up going back to school?
Would I end up on the Gulf Coast trying to do my part in rebuilding after Katrina?
Would I be dead?

If you’d told me I’d end up married to someone much younger than I, and very afflicted with MS, I’d have thought you were nuts.

Same goes for if you’d told me that Donald Trump would be elected President. (Hell, that would have been true two years ago.)

So, what inspired this prompt?

Tomorrow I’m off to Georgetown School of Medicine for consultation about potentially being used as a research subject in whatever they’re doing for multiple sclerosis research.

They can do whatever they want to me. If some short-term discomfort can make this nightmare end, okay, I’m willing to try.

So, that’s tomorrow. Up-and-back on Amtrak is a long day, but at least I can do that now.

Hell, me taking Amtrak at all would have evoked the “you’re nuts” response.

Facebook seems to be especially-good at bringing up bad memories, too. Today saw pictures of my destroyed apartment back in 2009. This is the first thing I wrote after the storm.

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Cold November Rain – 12/1/2009

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So, yeah, I’ve slacked off again, but I have a good fucking excuse this time….

When the remnants of Hurricane Ida turned extra-tropical, and became a Nor’easter, well, Norfolk (and me, personally) got hit pretty hard. It’s been a wild few weeks, and my apartment still isn’t fixed. My dollar damage was just below my insurance deductible, but…..

Four days without power
A week without hot water
Two weeks without laundry in the building

I ended up doing work at the radio station in the middle of the storm. They lost several machines during the power weirdness, and I spent time getting them back running. They’re still using a spare computer of mine as their mail server. What else was I going to do? Not like I had anything to do at home.

Still don’t know when my bedrooms are going to be fixed. Plaster down. Mildew. Stained carpets….

In brighter news, we’re going to see the Saints play the Redskins this weekend. In DC. It might snow.

Can I catch a break sometime?

In the midst of all the chaos, I did, however, finish up the two year project from hell at work. Ironically, a disaster recovery project…..

Notes:
I have to take two buses to do my laundry, so that last complaint is vetoed! 😛 The rest of it does suck, though. [donut] 12/1/2009 8:47:41 PM

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Ahh, that is so not cool. 🙁
Hope you had a great time at the game!
[.Red] 1/4/2010 2:29:01 AM

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.

I got out of order on my prompts trying to fill spaces.

Armistice Day. I’m going to write about the war Tom Browaw forgets.

As a kid living in Germany, there were lots of things I saw related to the First World War.

98 years ago today, the fighting stopped, but I think a good argument can be made that the war’s never really ended.

I’ve been googling around, looking to see if I can find relatives who served. I know one of my great-grandfathers did. He was a Second Lieutenant in the Army. My great-grandmother used to tell the story of how they were let out on leave between training and shipping off overseas. The platoon sergeant told them not to go get married during their breaks. All but a couple in the platoon did (my great-grandparents included).

But, there’s so much that people don’t know about. How about the Rape of Belgium?

The quip about Tom Brokaw is related to this. So much of what Brokaw’s been doing since he “retired” is directly-related to the “greatest generation.” Yes, World War II was a disaster. Yes, the blame for some of its causes can be squarely pointed at the United States.

Still, the seeds of the war were planted as the European empires collapsed. Because we had an ineffective academic president (sound familiar?), his grand scheme to punish the Germans in perpetuity didn’t pass the Senate, and let the French and British set the state for the use of the Third Reich.

Also lot on many is the sheer number of people who died in a four-year war. I can remember my dad taking us to the Somme battlefield, and having no way of understanding what it meant that one million people. died in that single battle.

I was last in Belgium in 1993 or 1994. The town of Bastogne was invaded by the Germans at least three times, but when most Americans think of it, all people might know is General McAuliffe’s “nuts.”

I don’t remember much coverage of it when I was in high school, despite being in Germany. When I got back to the States, there was even less. I asked my wife about what she’d learned, and it was basically nothing.

As we’re now in the century mark since the war, there’s been bits here and there. Seeing poppies at the Redskins’ game probably befuddled many.

I watched the ABC/CBC/BBC documentary series on one of the streaming services (Netflix or Hulu). Just incredible. People just don’t know.

And today is Veterans’ Day, which is the US version of what was the commemoration of the armistice. The cease fire went into effect on the Western Front the eleventh hour of the eleventh day of the month.

Are you satisfied with the results from yesterday?

Yes, things are all out-of-order with my prompts. My scarred brain is more than a little scattered with all that i’m dealing with right now.

So, on the results yesterday, I’m very surprised. Am I disappoint? Yes. Would Hillary have been a complete disaster as President? Absolutely.

If her campaign can take any solace as they nurse their hangovers this morning, they did convince me not to vote for Trump. (As if that would have taken much, but….)

The really cynical side of me screams something about Trump’s tax returns, but I’m bored with that (and have been for weeks).

Am I surprised/ Yes. Perhaps even shocked.

Same, too, with what I thought was something unwindable for the Republicans – Senator Ron Johnson. While the hipster progressives were focused on Christine O’Donnell, to me, the real story of 2010 was Johnson beating Progressive fan favorite Russ Feingold. I can remember many touting him as an ideal Presidential candidate in the middle of last decade (you know, not long after people like Stuart Smalley were elected.

After he lost, Feingold went away for six years, only to run for his old seat back this year.

Largely against the prognostications, somehow, Johnson won re-election yesterday.

In some ways, that shocks me more than Trump’s win.

As for my votes, I was zero for four. I expected that. Am I disappointed by that? No, not really. As I wrote yesterday, I expected that.

Going forward, it’ll be interesting to see what happens in Congress. There’s not enough in the President Elect’s coloring book to point to any specific things he’ll be championing.

So, I’m surprised, but how the two parties deal with will determine their futures. (I’d be okay seeing both disappear, myself.)

Election Day. Write about your votes.

I’ll go in reverse order, because it’s more interesting that way. Further, I expect all of my positions to be defeated. This is not at all uncommon.

There was an amendment tinkering once again with the Virginia tax laws to excuse more people narrowly from paying taxes. If I was a good Democrat(TM), I’d say, “their fair share.”

The entire tax system needs overhaul in the Commonwealth. More targeted tax cuts for specific people. No. The same thing applies to the Federal system. I paid more in Federal Income Tax (not fucking payroll taxes) in 2009 than I grossed in 2002. Why? I didn’t rent a house from the bank in 2006 that I couldn’t afford. Similarly, I pay for my health insurance with after-tax dollars, and have since I was laid off for the second time in three years in early 2014. During the “Great Recession,” it’d gotten to the point where more than half of people who filed taxes paid absolutely nothing.

To the people who’d be “helped” by this proposal, I’m sorry for your situation; it sucks. But for every dollar you don’t pay, someone else should pay an extra one. Whether or not that’s actually happening is another matter. Eventually, it will have to be paid.

Stop with these stupid token things, and fix the bigger issues. Some of your supporters may actually end up having to pay taxes. Some rich people might end up paying more. Whatever. Do the right thing.

The next amendment was about adding the principles of right-to-work to the Virginia Constitution. I, somewhat reluctantly, voted for this amendment. You shouldn’t have to join a coercive organization in order to work somewhere.

Organized Labor, especially the AFL-CIO, is vehemently opposed to more formalization of right-to-work. That, by itself, might have made me enough to vote for this. At the same time, I’m not a shallow Republican or Democrat, so that’s not enough. One of the things the Democrats have been hammering this year is problems with the “gig economy.”

Your health insurance should be tied to your job. (And if you can’t work full-time in an office, you should be a charity case.)
You shouldn’t be able to use your car to drive people around.
You shouldn’t be able to let people stay in your awesome place while you’re going to be away.

If you agree with those things, I hope you’re probably against the amendment, and support the mainstream Democrat candidates. The new Chrysler, which the US Supreme Court tore up 200 years’ worth of bankruptcy law to create, has only four pay bands. If you have a job there, you will pay a big portion of your salary to the union thugs, and never move up beyond the top band. Good shit. But, hey, after 30 years, you get a watch.

Similarly, for the House of Representatives, after the Supreme Court essentially reversed its 1993 decision on majority-minority districts, there’s actually a Republican running against my Representative (who’s been there since 1993). I voted for him, despite knowing that he’ll probably still lose. So said Mark Twain, “[p]oliticians are like diapers; they need to be changed often and for the same reason.”

Do I think Rep. Scott is doing a terrible job? No. At the same time, he’s been there for longer than some of the voters have been alive. I also was very encouraged by him signing on to Rep. Ellison’s bill significantly curtailing the mortgage interest deduction. Although I’d go farther with it, I’d also add to that an absolute 30-year limit to using it.

The days of buying a 2500 ft.’ McMansion are over. People want to live in cities. They don’t want to live with four generations in under the same roof. Deal.

Back to the House, however. Where in the Constitution is the House limited to 435 members? Nowhere. Make the House proportional again. Take a state’s population, divide by Wyoming’s, and round to the nearest whole number. If the House won’t fit in the current chamber, hold things somewhere else.

Expanding the House would also fix the Electoral College. It’d also be much easier to make sure minority-majority districts stay that way. (I write that as a mostly-white guy who will probably never know his true racial heritage, and is okay with that….)

Virginia’s two Senators are not facing re-election this year (although the junior one with his $160K in gifts as governor will probably end up being Vice President…), so we’re to the Presidential race.

I did what I promised myself that I would; I looked at the last polls, and I don’t think Virginia is going to be close, so I voted for the Libertarians. Since I started voting, I’ve pretty much stuck with this. In 2008, I kind of abandoned this, thinking Obama would be terrible. Otherwise, I’ve stuck to it. If Virginia was going to be a contest within ten points, I’d hold my nose, and vote for the less-horrible major party candidate.

This year, however, the two parties’ candidates were both unspeakably bad, so I adjusted my threshold. I looked at the last Virginia polls, decided Clinton was probably going to win, and punched the high contrast, large text button for Gary Johnson.

Do I have issues with Governor Johnson? Yes.
Do I have issues with Governor Weld? Yes. Even moreso after his bit with Rachel Maddow on MSNBC recently.

So, why’d I “waste” my vote? I want the LP to have recognition going forward. They went with some particularly bad candidates after Browne, but are trying to build a legitimate organization. Thanks to decades of two-party manipulation of election laws to maintain their duopoly, it’s very difficult for something different to get any foothold.

I don’t believe in forcing you to do anything.
If you want to take drugs, that’s up to you.
If you want to do stupid things, financially, that’s up to you, too.
If you want to live as a professional student, fine.
If you want to rent a house from a bank for your entire life, that’s fine, too.
If you want to have a bunch of kids, fine. Understand that they’re your responsibility until they reach the age of majority, and the state will protect their rights until they reach that age if you’re not doing the job.
If you want to follow a seventeenth century English King’s version of the Bible, that’s fine. I don’t.

All of those things bring consequences, and those consequences will be for you, and those who love you, to deal with. Please don’t expect me, a person who can barely see and walk, to pay for it. No, more than that, don’t get men with guns to make me pay for it.

aying attention about age ten. We were living in suburban Washington, DC. as the Redskins were assembling that 1991 team (which was one of the best teams of all time).

I am a New Orleans Saints’ fan. Yes, I remember Jim Mora for before he was famous for, “Playoffs? You kiddin’ me?”

Based largely on my playing experience, I’m a big believer in tow things – the I-Formation, and the 43 Defense. Vince Lombardi might have won two Super Bowls, but Tom Landry was the best coach in history.

In the NFL this year, I’m seeing those things I like come back.

Unfortunately, the Thanksgiving schedule is still screwed up. But at least there’s some AFC representation. It used to be that either the Lions or Cowboys would face a division rival (think Bears-Lions, or Redskins-Cowboys) or NFC powerhouse, and the other would play an AFC team. They added the Thursday night game probably about ten years ago, and the last few years, those have been completely-NFC games.

This year, there’s two NFC division games during the day, followed by an AFC matchup.

What more am I seeing?

What an absolute genius Al Davis was. His last draft pick is really becoming an internal part of the Steelers’ offense.

I’m seeing some good games on TV this year; maybe that’s why ratings are down. (If you’ve seen CBS’s primetime offerings, you understand that quality programming is not what gets numbers…..)

I have not idea what’s on this afternoon. Maybe I should look at that. Not really feeling like writing today. I think the Redskins are on a bye after their tie in London.

This year, I’m really liking watching the Raiders.

Write about your siblings. How many? Where are they? What do they do? Do you get along better now than you did when you were kids?

I have one younger brother. He lives, again, in Northern Virginia. For the past couple of years, he’d been living in Texas, on account of his wife’s job. While he was down there, he was doing some data science work for a major telecommunications company, away from government. Now that he’s back in NoVA, he’s back to dealing with supporting government (what our father did for the time after he retired from the Army, and I’ve been doing for the last decade).

I don’t know, exactly, what he’s doing. His interests were always a bit different than mine. His education also far-exceeds mine. For awhile, there, my work experience made up for my lack of post-graduate education. I’m not sure if that’s true, anymore. I also really suck at Minesweeper, so I don’t have a list of initials to string after my name on my LinkedIn profile.

He and I get along a lot better than we did when we were younger. I really didn’t like his high school girlfriend, later first wife, very much. (He probably felt the same way about my longtime girlfriend from high school and college….)

There were a few contentious incidents when we were both in our teens. I also didn’t appreciate his attitude on several things. shrug

Since we’ve been apart, and he’s been away from his first wife, we’ve gotten along pretty well. Our wives seem to get along well, too. (And, M., my wife’s newfound fantasy football obsession is your fault…..she’d refused to play before you urged her….)

Since our dad died, and I quit driving (and making decent money!), it’s been hard to get together with him. When he was in TX, I think I only saw him once. I haven’t seen him, yet, since they’ve been back in VA.

Today is his birthday. I have very vague recollections of my mom being pregnant, and his birth. I was three. I remember more dealing with some of his health issues as a young kid (both at the Naval Medical Center probably about half a mile from where I now live, and at the University of Kansas Medical Center in KC).

I know I hurt him more than once. Protip: don’t put a full crock pot on a bench seat because you don’t have something free on the floor. I also did things to take care of him. (I won’t elaborate.)

He, actually, was probably the one who came closer to fulfilling our parents’ wishes. When I was in high school, then beyond, I really was intent on trying to set my own path. Varying results, there, but he never ended up working in a hellhole like I did for a few years. I don’t root for the sports teams our dad did. (And my adherence to Royals’ fandom yielded thirty years of disappointment….)

Today is his birthday. I seem to remember snow sometime shortly after he was born. It’s stayed pretty warm here this year.

I’m going to stop now, because there’s not a lot more to say, really.