Staying Put

This weekend’s news? We’re staying put for another year or so. Whether or not this is good news or not is open to debate.

I’ve also pretty much made up my mind on how I’m planning to vote Tuesday. Though, traditionally, I’ve been a vote-first-thing-in-the-morning guy, I’m going to go after work. In 2008, I had to wait three hours; I want my vote to count, so I chose not to go cast an early absentee ballot. I can come home after work, chill out for a bit, then go over to the Chrysler Museum. If I’m in line by 1900, they have to let me vote.

Pretty disgusting seeing the tweets from NBC tonight; they’re so desperately hoping that something goes incredibly wrong with the voting Tuesday. Yes, they want Obama to win, and the Democrats to keep at least one part of the Congress. But the messier the better for Sweeps. Sandy is over. Not a lot of people died. That’s a bad thing for TV weenies.

Day Four

Since I don’t have a tome for either, I’ll try to address both writing prompts. Instead of an extra hour of sleep, I’ll attempt an extra few minutes of writing.

1. What do you desire most in your life? What is holding you back from obtaining or achieving your heart’s desire?

At this point, normalcy. It’s very absent for anyone with somewhat fragile health. I have my soulmate. I had professional potential (though I have my doubts about it since my vision started going). The routines in life, however, are gone — possibly forever. I can’t know on a day-to-day basis how I’m going to feel, whether I’ll be up to whatever I have planned.

That’s put a strain on many other relationships I had. My wife is understanding; she sees what’s going on. Others don’t. But I don’t look sick! Yeah, and you don’t look stupid; looks can be deceiving.

I don’t feel comfortable around other family members for other reasons, too. There’s been a lot of bereavement in the past few years. Nothing, other than this little apartment with my wife, feels like “home.” When we stayed with my mom last year during Irene, it just felt strange. Visiting my grandfather and uncle after my dad died felt strange.

Thanksgiving with her parents will be a bit more comfortable (I am starting to feel a bit more at home at her parents’ place…..it has taken six years, but….), but I’ll be worried about what my mom is doing.

2. What is your strangest tic or habit? For example feeling compelled to sniff your food before eating it or always counting steps when you go up or down stairs.

Uhhh…..I have MS. I have lots of “strange” things. Some of them aren’t terribly noticable if you’re not paying attention. My left foot doesn’t point straight ahead. My gait is weird. I can’t run at all. My eyes do weird dances. Restless Leg Syndrome? Uh, no. But I do have similar twitches.

I also have “angry hands.” I do do this thing where I interlace my fingers when I’m frustrated with something.


*yawn*
Yeah, time to post up, and try to sleep. Aint’s aren’t until Monday night. But watching Eli Manning beat the Falcons will suffice.

Day Two

Writing Prompt: What was a time you felt the most brave? What was a time you didn’t feel brave at all? 

Much like yesterday’s entry, it’s tough to pin a single instance down. I am, by no means, a corageous person. Am I the lion from The Wizard of Oz? Hardly. Am I brave? Hell no.

So, two brave times (and they may also just have been stupid).

1. 2004, when I drove to and from Spokane to see my friend. Alone. I’d been feeling horrible before the trip, so I figured if I made it alive, I’d be okay. I did. Felt like crap when I was there, but felt somewhat okay on the way back, and the week after. I didn’t have many more serious MS symptoms for years after that. (Until the bout of optic neuritis in 2006?)

2. When I went for the MRI for diagnosis. Well, three MRIs. I hadn’t married, yet. My dad offered to give me a ride to the hospital, but I truned him down after they scheduled me at 0545. I drove myself. I made it through almost three hours inside that damn tube. No drugs. I admit I did punch the panic button once, but that’s only because I was afraid I was going to puke after they injected the dye.

And, on to the least brave….

1. Leaving that last company, which shall not be named. My boss was on vacation. I’d driven to his house before he left to let him know it might be happening if I got the offer.

I really didn’t get the offer I was hoping for. I got a different one. The money was right, so I took it. I’m still there. It’s now the job I’ve had the second-longest in my life. Telling the weasel owner I was leaving was tough. I thought I liked the guy. Little did I know what he’d done — what he’d done, what he was still going to do to fuck me over. Seriously, fuck that guy. There’s a reason he’s teaching high school in Florida.

They fired my boss two days after I turned in my notice. I turned in my resignation letter as I was leaving Monday evening. They fired him Thursday. While he was still overseas on vacation. Yes, that shady. My problems started a couple of weeks after I’d left; walking in to the Magistrate’s office to take out a protective order takes a certain amount of bravery….

So, moments of being not brave?

Umm…..I’m sure they involved medical stuff. Getting veins stuck does bad things to me.

 

Yes, there’s things missing from this that I put in the other one.  Sue me;  my blog sucks.  But, I will put in something here I omitted in the other one — douchebag’s initials   Since, after the mess with me leaving, I bitched vocally here about the criminality I saw, it wouldn’t surprise me if PG still checks from time to time.  If so, fuck you, guy.  Florida is exactly the right place for you.

Day One

Writing Prompt: What has been your biggest accomplishment in your life so far?

(And since this is my blog, I’ll track back to Dana, who’s doing this, also, though with different prompts since she’s using a different site.  But it’s a November thing.  I’m also doing the mustache for November.  If it looks stupid, it’s becoming a beard.  I already feel like a damn hippy, and it’s only been one day without shaving!  And, as I said, pls2notbementioning the URL of the other place where I write if you know, or find it.)

Have spent a lot of time considering what I should choose for this; I don’t focus much on past accomplishments. Not terribly long ago, I was complaining about the Captain Philip Francis Queeg school of management. Queeg, of course, spent his entire career trying to recreate his few moments of adequacy. I try hard to avoid that.

My focus, professionally, is creating a workable solution at a low cost. Sometimes finding that solution requires setting aside what you’ve done in the past, and re-examining everything.

Getting married has definitely affected my evaluation criteria. Things I would have taken pride in as a single dude really aren’t important anymore. Woohoo! I drank an entire six pack in one sitting! Big fucking deal to most frat boys. My wife, however, would be disgusted by that behavior.

So, since I can’t isolate a single thing, I’ll just throw some things out of which I’m proud:

1. That I married someone who might possibly be my perfect partner.
2. That I’ve yet to miss a dose of any of my MS meds, now more than two years’ into taking them.
3. That I am dedicated to work, despite more than ample reason not to be.
4. My service to others. Some of it is kind of thankless, but…. The vast majority of it’s been without compensation. Is it satisfying when something I put together is still functional years after its expected demise? You bet. As far as I know, there’s systems in use at former jobs. My old company, whose name I will not mention, is still selling things I designed. Something I put together now almost seven years ago is still chugging along. And so on.
4. That I surpassed the 2,000 entry mark, and didn’t even notice it.
5. That I’ve been responsible elsewhere in my life last few years. I was reckless when I was younger. I admit that now. Yes, being sick has sapped my reckless abandon on some things, but I’d started down that path before I knew I was sick.
6. Forgiveness. I’ve gotten better about it. Those who’ve harmed me may not be as dear as they once were, but I’m still civil. When I was younger, I probably wouldn’t have been.

So, is there a lot to point to, there? Yes. Is there a “crowning achievement?” No. (Though number one comes awfully damn close…..I still haven’t figured out how I pulled that one off while still being myself….) I’m okay with that.

MS, storm, Tide, etc.

Met with PCP this morning. Had a long discussion. No leeching. No flu shot (they didn’t have them). I’m satisfied. She’s learning, doing as much research as she can, trying to figure out how to best care for me. Yes, medicine is a science, but it’s not an exact one. So, the stuff I’ve been on may have quit working. Okay, try something different. Maybe I’ve built up a tolerance to it. Maybe I’ll end up back on it. Who knows. I need to go see her again after New Orleans, and we’ll forge ahead.

That brings me to issue two: storm. I had three months’ worth of Copaxone in my fridge. Teva’s service company says it’s okay, so long as it wasn’t ever over 86F, and wasn’t poorly refrigerated for more than 24 hours. I’m good. Renters’ insurance is going to cover the food we’ll have to throw out. It’s not a big claim, and she was happy to pay it. We could get by without it, but, there’s a reason I’ve been paying them for almost four years, now.

Doc also wants me to keep daily tabs on my vision, balance, continence, and extremity numbness. I can do that when I do my shot every morning. No biggie.

Not good news

The Copaxone stopped working at some point (if it worked at all), and I had two new lesions between December and August, one of which was active during the scan last week. Other lesions grew in size.

*sigh*

I really haven’t noticed any significant deterioration, and, for the most part, I feel the same as I did in December.

I dunno.

Doctor would like to switch me to Tysabri. Tysabri has a rare, but often fatal side-effect. This is a big concern, obviously. That said, there’s now a blood test to determine susceptibility (which seems to hinge on exposure to a virus in the past). I guess we’ll see. I’m staying on the Copaxone for another three months, and we’ll re-evaluate in November. If I haven’t been exposed to the virus that causes the fatal side-effect, it’s likely going to be Tysabri. If I have, it’ll be Rebif or stay on the Copaxone.

Still, trying day, and I’m more than a little upset at the nurse who told me last week that there wasn’t anything new or active on the MRI.

*sigh*

One of those things you wonder about

….whether or not you might have inadvertently pissed someone off with some offhand comment.  Maybe it shows that I haven’t completely quit giving a shit about others’ feelings.  Dunno.  Of course, there are some people I know I’ve pissed off, and I really don’t care if they tell me or not.  Maybe it’s getting old.  Maybe it’s realizing how petty, and lacking in understanding they are.

Excuse the random bitching.  But, I really doubt anyone ever reads this, anyway.

Followup to last

So, no progression on the lesions on the MRI, but nurse said the neuro wants to switch me to a different medication.  If you’re confused, so am I.

I’ll push back on it, unless there’s a really compelling reason.  If it’s working, I’d just assume not switch.  Yes, taking shots every single day seriously sucks.  But it’ll have been fourteen months on monday, and I haven’t missed a single one.

Dunno.  I guess we’ll see.

Electromagnetic

So, MRI today.  The techs weren’t really forthcoming with the information, and I don’t really like having to wait.  I’ve delayed my prescription refill until next week, hoping the neuro’s office will let me know before my appointment next week that everything is a-okay.

 

But I still can’t say I’m used to this nonsense, and the reflective dye injection still treats me badly.  I didn’t have as bad a reaction this time, but still felt like I was going to puke.  Bleh.  I’m thinking that, more than the other concerns, makes the Tysabri less of an option for me if I need to switch meds.  The results about improvements in vision, along with it being only once a month are plusses, but, still, IV.  Bleh.