Summer Writing – Page 19

27

I’m on the phone with a hospital system, trying to figure out payment stuff.
The medication I’m on for MS is incredibly expensive. They pay up to my out-of-pocket maximum on my nearly $700/mo. plan through the Federal Exchange. Even if I was currently employed, I’ve not had a job since 2014 that paid benefits that work in the local area. If I lived in Northern Virginia, none of this would be an issue. So vote Democrat. They didn’t create this whole mess. Nope, no responsibility whatsoever.

For the entry, re-sampling. This time from 2011. Have my needs for a place to live changed?

NJM Day 7 – 11/7/2011

I may catch back up. I may not. We’ll see. All I can say is that Alabamastan moves even slower when the Crimson Tide are on TV.

So, today’s topic….

If I could live anywhere, where would I live?

I honestly don’t know. I’ve lived lots of different places.

So, what’s important to me at this point?

1. Public transportation and walkability. My driving days are numbered. My balance is shaky. I need good sidewalks, and ways to get places I need to go, like…

2. Good hospitals and doctors. Being sick blows. I like that there’s fresh ideas and approaches to my treatment. I probably wouldn’t get the same from a rural doctor.

3. Food and drink. I eat unhealthily. I drink too much. But I haven’t had any real tobacco in something like nineteen months, and……

So, where’s that leave me? Probably somewhere northeast of where I am now.

Am looking harder in DC for a new gig. My friend from college is going to stop in day after Thanksgiving; he works in NYC for a large IT company (you probably use their product every day you’re online….)….see, maybe, if there’s anything for me in NYC.

Who the hell knows?

If I could live anywhere, where would I live?
I need somewhere with good public transportation and medical care. None of that has changed. In fact, the first part has gotten more pressing. I can’t imagine living in suburban sprawl where I’d have to stagger miles to get to a bus stop. Where I am no, I have trouble finding the motivation a lot of the time to leave my building. I do consider Lyft/Uber to be public transportation, but even that can get expensive if you’re using it several times a month.

26

I’ve been really bad about publishing my prompts. Lots going on, unfortunately, combined with my body being in protest.
So, what’s a Wednesday look like for me? Check to see if any of my job applications has updated, listen to the repeat that was put out by Mouthy Broadcast. There’s things I could have said about some of the banter, but…..
So, what have I been doing during my unplanned (and unpaid) vacation?
Well…

I watch local news. Sure, I watch one channel more than the others, but I do watch all that I can pick up over the antenna here.
Check social media whatevers. Maybe where my Gen X comes out is that I really don’t pay that close attention to Instagram.
(Part of that is probably related to how bad my vision is, and that I can’t zoom in easily on photos….
I check my many outstanding job applications. I’m now over the century mark for outstanding Federal stuff. As someone with a disability, I qualify for special hiring preference. I also don’t have to hide who I am, or what’s wrong with me. One of the higher-ups at my last job really didn’t want to know what my major malfunction was. I did end up telling, but it wasn’t until several months after I’d had my first hospital stint.
Work on my long-neglected virtual host. That’s where I host control-h, as well as several other site

I apologize that I really can’t concentrate on this right now. Maybe I’ll write another later today; I owe a couple of entries with the late start.

25

Recycling, again, to see what’s changed since November 2010.
Here’s what I wrote then:

Day 29 — Relearning – 11/29/2010

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

Yes, I added this as a suggestion. I’ve had to re-learn many things, and still haven’t gotten the knack of all of them. What I had in mind when I left this was running. Since my latest MS flare, I cannot run at all. When I was in bad shape last spring, I could barely walk, really. Since then, my gait is almost normal, but I can’t run at all, really. My feet get tangled up.

It’s kind of incredible when you actually think about everything your body does to run….the signals being sent to your brain to make it happen. For me, that includes signals your feet send every time they hit the ground.

Imagine trying to run when your feet are asleep. My feet feel like that all the time.

Still, there’s been other things that have been affected.

*clutch*

Early on there, driving was difficult.

*clutch*

Oops, caught the brake with my toe….

Some more even basic life functions were and are still out-of-whack.

Some days if I give myself my shot in the wrong place, my diaphragm doesn’t work.

*breathe*

I’m penciled-in for physical therapy in a few months to learn how to jog again. While all this has let me lose a lot of weight, I do want to be able to effectively exercise. Right now, I can’t.e stuff below the waist. I mean, I was potty trained by like three. Urgency, make it to the bathroom on time, then can’t let go…..

What’s your personal fashion statement when it comes to dressing? Which look describes you and what are your signature clothing accessories?

The others weren’t working, so I’ll take a stab at this one….

I guess the most notable one would be button-down shirts. I really don’t like wearing anything else. But not everybody can pull off wearing a white shirt without a suit. I can, so I do. And I do manage to keep them clean most days. 🙂

I also rotate my glasses. I have about four pairs I vary, depeding on what I’m wearing, and what I’m doing. My big black and brown acetate ones are probably most comfortable. I think I paid about twenty bucks a pair for them….

When I need to look nice, I have more stylish stuff. My nerd glasses haven’t gone with a suit and tie…..yet.

I still haven’t bought that brown suit I’ve been wanting. Thing is, I don’t need to wear a suit very often, and I’ve been hesitant to buy something until my size stabilizes a bit more.

Have you ever had to re-learn something that used to be second nature?
Back in the 2010 entry, I was writing about driving. My vision has gotten so bad that when I moved, I didn’t renew my license. I haven’t even tried to drive since about the end of 2012.
Quick primer on what MS does to vision. While I don’t have really bad double vision, my acuity is very bad. It must have been sometime in 2012, I visited a neurological ophthalmologist, and she wasn’t able to even come close to correcting me to 20/20. Combined, I was at about 20/50. In my right eye, I was correctable to 20/60. She couldn’t even correct me to 20/200 in my left eye. I am left eye dominant, so this is a big part of the problem.
You really can’t re-learn seeing, but there’s other physical things I’ve had to try to remaster.
Stairs aren’t my friend. I quipped about something yesterday about dipping my perpetually-numb toes into something (the NYC market, maybe?). Going up is a lot easier than going down, because I can’t feel my feet hit. I don’t know that I have a good foothold.
My weird crosshandedness has made things even tougher as my nerve damage increases.
I find myself doing a lot more things with my left hand. Sinister.
That does include things that I learned how to do right-handed. I wonder if I was to do some sort of physical activity if now I’d try to do it lefty.
Holding a racket, even throwing. I’ve batted left-handed since I was about fifteen years old. I know that I’d still do that if I was able to see well enough to actually make contact….
I hold my cane in my right hand, so my left will be free to do things. *shrug*
What’s your personal fashion statement when it comes to dressing? Which look describes you and what are your signature clothing accessories?
I really don’t have one. When I’m home, it’s jeans and a T-shirt. When I got to work, it’s slacks and a button-down shirt.
This prompt from years ago does start to walk on something that’s bothered me a lot lately; who gives a fuck about my style?
Maybe that’s the sort of thing that’s from a generation prior to mine. One of the local shady car dealership groups has a flowery jingle telling buyers that YOU can have it all! *headdesk*
Get over yourself. You have a car. You take care of it. You drive it. That’s not remarkable, and nothing you do will make it so.
I could launch into a long tirade about this, but I understand that probably nobody is reading this. Someone from the Me Generation wouldn’t be okay with that.
I am.

24

I didn’t reference Blink 182 for yesterday’s entry, so there’s that. What I’m going to do for today is revisit something I once wrote, and see what’s different today.

Life Review – 2/22/2000

Periodically, I do a full review of everything I do in life. Every little thing. I then rate those things on an evaluative scale: like, dislike, indifferent.

Examples would be like this…..

Like: Reading OD, messing around on the computer, being on the air

Dislike: Doing Dishes, thinking about my psycho ex girlfriend, watching Kathie Lee, doing my taxes

Indifferent: Brushing my teeth, paying bills.

I then try to cut out the things I don’t like, and don’t absolutely need to do. Normally, I can hit upon some things I’m doing that I don’t like, and are really holding me back in life. I haven’t been able to find anything certain in this round.

So why am I in such a funk?

Why do I feel like I’m having so little success?

Why can’t I, for the life of me, find a girlfriend?

Sorry for the bitching, but I’m a bit frustrated right now.

I was twenty when I wrote that.
I haven’t done much in the way of life reviews since about my thirtieth birthday. To paraphrase someone, the die is cast. (Yes, I know who it is….)
Likes: actually building things, spending time with my wife, eating good food, drinking good drinks, trying to follow football and baseball.
Dislikes: working to just stay above water, MS (and all its negative effects on me), the segment of the population for whom politics has replaced religion.
Indifferent: There’s too many to list, really. (And, no, that doesn’t mean I’m really depressed…just that I don’t really get excited or depressed about mundane things.)
Changes are happening in my life, whether I’m ready for them or not. I fully expect something by the time I finish up this round of writing (20 August). Whatever those changes entail, I’m good with.
Things are better than when I wrote this two years ago. Worse than last year, but I was getting frustrated with what I was doing.
I am getting back into things that I really do enjoy, though. Rediscovering that which made me me.

Three Things

I didn’t get out prompts yesterday.
Much of the afternoon was spent trying to get my mother’s laptop working.
Then my in-laws’ house, the supermarket, and home for dinner.
After dinner and a beer, I was in dreamland.
So, onto a prompt I’m recycling for today….
Tell us about 3 things you have done in the past year that you have never done before, big or small.
1. Spent a night in hospital. One of those bucket list items, I suppose. I ended up spending five nights in three trips between September and June. When you’re killing your immune system every four weeks, bacteria can have a pretty miserable effect.
2. Ditched a day of work to go on a job interview. One of the changes that Amtrak made was extending the Northeast Regional down to Norfolk. I had an interview with a Federal agency, so I went up, interviewed, had lunch with a friend at Union Station, and rolled back home. It’s a long day, and I didn’t get the job, but the whole experience was probably more worthwhile than spending a day analyzing network scans.
3. Considered moving to NYC. This is something that’s come about in the past few months, really, but I’m sick of what I’m seeing here, and want something different.

Double Deuce

The last two years, I’ve written in the month leading up to my birthday.
I also write in November.
I am starting late this year, however.
This week has kind of been a week from hell. My in-laws had to put their dog to sleep on Sunday. Tuesday I got laid off. Again. Third time in the past four and a half years.
While it hurts, I was actually considering whether or not to give them any notice when I got another offer. In the IT world, and I can’t help but think this is one of those unwritten side-effects of the Patient Protection and Affordable Care Act, companies don’t seem to be hiring full-time employees. Keep everybody as a W2 contractor, and you don’t have to spring for expensive “employer-sponsored” insurance.
The group I was supporting was going through all sorts of fun financial gymnastics, so what was supposed to be a six-month contract-to-hire, became fifteen.
No benefits. No PTO. No sick leave.
No paid time off. That includes Federal holidays. While others were getting paid for Thanksgiving, Christmas, and New Year’s Day, I was just not working, not getting paid.
That I landed in the hospital three times over the past year probably didn’t help matters. (One night in September, two in October, and another two in June.)
C’est la vie.
But it’s over now. On to other things.
I need to get up my writing prompts. My wife said she was going to help me find some, but I’m still open to suggestions. I will probably dig up stuff from my old diary, and previous writing efforts, but I just haven’t had the time.
I just got my PC up and running. We had to move very unexpectedly in May, and really haven’t gotten the new place fully set up.
Maybe I’ll get some prompts up this afternoon. Maybe.

Twenty

I searched for Porky Pig doing “That’s All, Folks,” but I couldn’t find something worth embedding.

Today is the last day I’m writing in this stretch. It’s time.

Am I very satisfied with this month of writing? I don’t know. Maybe I mailed it in a bit in a few places, but I’m showing that I’m still capable of doing it.

So, what else am I still capable of? I guess we’ll find out.

Last night, my wife and I finished binge-watching Silicon Valley.. She was very reluctant, but has grown to appreciate it.

As I’ve said, watching that does spark the desire to do something that’s different than what I’ve been doing. I want to be working on something interesting. What I’m doing now is really just dotting lower-case Js, making sure little Fs are crossed.

My skills have wanted somewhat, largely because I haven’t had the financial means, or the energy to do anything terribly interesting. (And here’s the part where I’d snipe about naming names, etc., but….) For the past few years, I’ve done what I needed to do to get through the day, and not much else.

That is no way to live.

So, as I said yesterday, I’m excited about the opportunities for the next few rest of the year. (And the start of yet another year of my life.)

I know there’s some obstacles I’m going to have to face, starting with more discomfort courtesy medical professionals. My rent is also going up by the outrageous amount of twenty dollars per month. So, another year in Norfolk. I’m okay with this.

I’m still looking for topical suggestions for November. Post a comment on one of my entries, or email me.

I’m also happy I’ve found my old OD writings. It’s interesting to go back over what I wrote way back when. (An incredible one is at the end of this entry….wow)

Now it’s time to go find something to eat, maybe, and figure out what I’m doing for the rest of the day.

Something Stupid – 2/19/2002

I received this in my e-mail account at school. Interestingly enough, minority enrollment has dropped 50% over the past three years. I have edited out the name to protect the guilty.

Date: Tue, 19 Feb 2002 07:52:32 -0500
Subject: Special Lunch

Harbor Lights invites you to join us for
Black History Lunch
Today from 11:00 until 2:00
The Menu will be as follows

Louisiana Fried Catfish
Southern Style Baked & Fried Chicken
Carolina Pulled Pork BBQ
Baked Macaroni & Cheese
Candid Yams
Seasoned Collard Greens
Stewed Tomatoes
Hot Corn Muffins
Hot Cobbler Bar
Plus the Salad Bar and your drink for $5.25!

Twenty

Name foods you disliked as a kid, but crave now. Describe the opposite, too.

How much space do I have to write about this? There are so many.

I still don’t like half-chickens (eggs). Still not a big fan of entrails (liver, gizzards, etc.).

A lot of where I am these days, though, is if something doesn’t smell bad, I’ll try it. This is something I can do before those senses dull. (Yes, loss of the sense of smell, and taste is an MS symptom).

Speaking of that, one of those symptoms felled me hard today getting off the bus. That leads me to how I’m planning on approaching this;. Instead of gathering all my prompts beforehand, I’m just going to freelance, and work on whatever comes to mind as I write.

Part of that was seeking prompts from the Mouthy Broadcast folks. The question was something that I’d rather not reproduce in polite company (as if that really mattered, but….), but that, combined with today’s tumble lead me to: what’s the worst pain you’ve ever been in?

Today’s fall isn’t it, but I hurt a lot. It was so uncomfortable, I spent the money on an Uber home instead of waiting for another bus.

Nineteen

Writing early because I didn’t sleep well, again.

Today, I write about my condition. I’ve tired to avoid that, but it’s important that I do. Yesterday’s entry has what I wrote back in November 2010.

From 2010: I mean, the biggest thing, probably, is that people kind of think the worst about the progression — that I’m going to be a complete cripple within five years.

That hasn’t happened, despite a few disease exacerbations, and a long path finding the right treatment. I carry a cane when I’m out of my house these days, and have trouble going down stairs. My vision is also horrible.

I really stopped driving in the middle of 2012. Yes, a bit of an accident prompted that; I hit a spare tire that’d fallen off of a truck right in front of me in heavy traffic. When I tried to drive, again, toward the end of that year, I was having trouble working the clutch, reading the speedometer, and seeing red lights. (Yeah, a red light against a green tree? Good luck with me seeing that.)

But, on top of the physical problems, my horrible work situations haven’t helped. There’s a handful of people I’d just assume I never speak to again. I’ve never been spiteful like that, but no money on top of physical pain, disease-related difficulty, brings that on. (The first job after I was laid off was 78% of what I’d been earning. The second was a bit more salary, but no usable benefits.)

Have I been mistreated? You bet. Have I done things I probably shouldn’t have? Probably a couple.

Have some friends really shied away? Yep. Whatever. I could be angry about it, but what’s the point? I have other things to worry about.

All that said, I’m now on a treatment that seems to be working pretty well. I honestly often feel better than I have in years. But the damage is done, and I wonder if/when I’ll get back to living a somewhat-“normal” life.

There’s important work going on that might actually “cure” this disease. No, the treatment doesn’t sound fun at all, but getting my vision back would really make my life better. Studies have been done in the UK, Canada, and Israel with “miraculous” results. You don’t see that sort of language used in in the medical field.

(Essentially, they drill your femurs, gather stem cells, cultivate them, completely kill your defective immune system, then inject the stem cells to rebuild the immune system and repair damage caused by the disease. I’ll spare my commentary about the political implications of this, but I’ll say that I’m excited about the fact that the very-Catholic Georgetown University might be one of the places they try to do this in the US…)

I’m happy with some of accomodation my new job affords me. I’m still getting up-to-speed on some things, but I’m getting by. It’s incredible seeing the struggle ongoing to string along all this expensive legacy stuff.

I also have zero benefits, so my salary is still probably only about what I was grossing in 2007.

But I have a wife I love, and try to learn new things every day.

Tomorrow is the last day of this writing period. Taking suggestions for November, or any time before then. Hopefully, the rest of this year continues with the hopeful pirit I’ve had for the past few months.

Eighteen

Yesterday, I said this would be a free-write day, which is probably good. There’s a lot that’s been running through this scarred brain of mine.

First thing this morning was my really lousy German. The word I was searching for was schadenfreude, but I was thinking about the Dutch-speaking infusion nurse trying to figure out what defenestration meant. (One of the standard things before my infusions is questions about changes in medication or treatment. I said my wife was considering defenestration, but that hadn’t happened yet. She paused, then looked at my quizzically. German and Dutch are somewhat close, so she got the window part, but….). But schadenfreude. Why was I thinking about that? An acquaintance was lamenting that something that’d been produced in not the way he/she would have prescribed isn’t horrible.

Yes, that happens. Fucking deal with it. You don’t have all the answers, and sometimes something you were hesitant about turns out good. The commentary on that admission was equally telling. But when politics is your true religion, admiration of anything an apostate does is unacceptable.

So many things in my life I’ve had to accept that my initial take wasn’t the one that would work. I’m okay with that. Maybe it’s not what I would have thought, but, if it works, so be it. I’ve written about Tom Landry here, before. Part of where he messed up with the Cowboys was trying to do all the things. Stick to the defense, coach, that’s your forte. Roger Staubach would have told you that.

I’ve now forgotten the other thing I wanted to write about. It’s not reiteration of my thing from my twenty months in hell – if your solution to securing a Windows host involves “install Perl,” you’re doing it wrong. (Naturally, the genius to whom I was answering at the time said it was absolutely correct. After all, he’d been “doing this a long time.”)

For tomorrow, I’m going to see if I can update Day 19 from National Journal Writers’ Month back in 2010 (the first year I did it). I will have to see what’s changed. Saturday, of course, is a summation; why I do this, and did I get anything out of it?

Day 19 – On Being Sick – 11/19/2010

“Or, if you are someone with an illness, what is your biggest pet peeve about how others treat you, and what is the best thing anyone has ever done to you or for you since they found out about your illness?”

You know, nothing. What can I say? I mean, the biggest thing, probably, is that people kind of think the worst about the progression – that I’m going to be a complete cripple within five years.

I’ve likely had this disease since I was in my early teens; my neurologist is pretty convinced that my progression is very slow, and that some of my lesions are very, very old.

They also don’t realize that there’s lots of people in the public eye who live and work while dealing with the disease….who’ve also had the disease for a long time, but appear fine.

Best thing someone has done for me? I don’t have a clue when it comes to strangers or acquaintances. My wife (then fiancee) gets more credit than I could ever express for her love, support, and care.

Now seven months after the diagnosis, both of us are moving along. It’s tough, and I probably ask more of her than I ought to…..

Only so many spoons sometimes.