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Date: Tuesday, 22 Apr 2014 20:40

In the mid-80s, my mom and my late stepfather moved up to Vancouver Island. They lived in Port Alberni for a time, then built a house on almost 13 acres of land in Courtenay.

Her former partner’s been living in it as the caretaker. He hasn’t mentioned any maintenance issues. He hasn’t mentioned no running water in the kitchen.

That may be, in part, because this is the kitchen….

this-was-a-kitchen

I’m going to call him jerkwad because that’s as polite as I can be.

Our last few days went something like this:

Saturday: met with listing agent, met briefly with jerkwad when he brought stuff from the house to our hotel.

Sunday: visited the outside of the house, where we got a sense of maintenance issues. Roof looked dodgy to me. Jerkwad would not let my mother in the house. I was shocked at how poorly cared for it was on the outside. Then again, I do remember the place when it was almost new.

Monday: went with listing agent to the house. Jerkwad let her in, but not my mom. Listing agent was trying to talk to me while jerkwad was talking to mom. I wrote on agent’s pad that mom feared the house would be a total writeoff. Agent said she thought I was right, just based on what little she’d seen. We regroup with agent later on in the day and mom lists the property as is for a lot less than she’d been intending to.

Tuesday: Mom calls jerkwad, tells him she’s coming over.

He leaves a note in a box that basically reads as he’s not giving her permission to enter. Mom starts to call the RCMP, but I point out that it’s safer for us to visit their office rather than wait on property. So we go.

RCMP points out (I already knew this) that it may be complicated as to whether he’s even considered a tenant since he was supposed to be a caretaker. The constable calls jerkwad, who suddenly says of course we can enter the property.

It’s a total hazmat zone. There are rat/mice droppings. The kitchen is, well, you saw it above.

The place isn’t even up to being a teardown. It’s vile and disgusting.

This used to be the beautiful custom home my parents designed and hoped to live in the rest of their lives.

Author: "Deirdre" Tags: "Family, Important Things, Travel, canada..."
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Date: Tuesday, 22 Apr 2014 10:13

I woke up early. Neither of us slept well, in fact. Why is it always like that?

I love Hilton Garden Inn breakfasts. This one was particularly nice, for the record. Also: if you have your choice of Hilton Garden Inn or a Hampton Inn, the Hilton Garden Inn has the significantly superior breakfasts. I kept wondering why my breakfast experience at the lower-tier Hiltons was random, but it was simply because I kept alternating property types. These days, I won’t go for a Hampton Inn unless there’s no other good alternative. In short: Hilton Garden Inns have the ability to cook their food, where Hampton Inns just heat what’s brought in. Hilton Garden Inns have a bigger variety for breakfast. Go for the actual cooked food. If, you know, you get free breakfast, aren’t sticking around, aren’t in the mood for hunting, etc.

I took the first stretch of the wheel because it was raining (and we were driving my car, thus my increased familiarity with it was a good thing). We switched off in Vancouver, Washington, where my mom called one of her friends (local to there), but we wanted to press on.

I’d forgotten the exact way to get to Renton, where I’d had excellent gluten-free pizza at Smoking Monkey Pizza in the past. So we missed that. Oops. Found another place with Yelp, Amante Pizza & Pasta. The pizza was good save for being overcooked. (This can be a problem with GF pizza because cook times are different.)

We hit some bad traffic in and north of Seattle, but it pretty much cleared up well before the border. It took about ten minutes to cross. I don’t think I’ve ever been asked that many questions crossing a border, not even when I went to Vancouver for dinner last year. Not even in Bermuda or Liverpool. Kind of annoying, but okay.

Finally let us in, then we found the Tsawwassen ferry terminal. Checked in on 4sq and got a funny response from BC Ferries. Our ferry to Nanaimo (home of the famous Nanaimo bar) took two hours.

From there, it’s about 100km (60 miles) north to Courtenay. We arrived there just before midnight.

I’d done some internet surfing and found the Holiday Inn Express in Courtenay, which is a pretty sweet place with decent breakfast, though of the Hampton Inn style. It also has free wifi, which is even more awesome.

Author: "Deirdre" Tags: "Travel, canada, travel"
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Date: Monday, 21 Apr 2014 09:17

Note: Fixed link, which was broken initially. Oops!

I don’t know how many of you know who Kate is. I’ve known of her for quite a few years, but it was only a couple of years ago that I realized she was also an ex-Scn.

Here’s a long piece in the Village Voice written when her book A Queer and Pleasant Danger came out. Long story short: she’s one of the few trans* people to come out about their experiences in Scientology, and the first to be really public about it. She transitioned in the 80s. Unbeknownst to her at the time, she legally changed her name to Kate on the very day that L. Ron Hubbard died.

Kate describes, perhaps better than anyone has before, what it was like to become a dedicated Sea Org member during Scientology’s more freewheeling heyday. – Tony Ortega

Of the Sea Org members who’ve worked directly with L. Ron Hubbard in some capacity, Kate’s the third to write and publish their story. (Nancy Many and Jefferson Hawkins are the other two.)

Anyhow, she has lung cancer. Or, more accurately, her lung cancer’s back. She’s got a fundraiser going on. If you’re inclined to donate, here’s the link. If not, I recommend her book.

Kate’s Twitter, where you can verify that link comes from her.

Kate’s blog, which is currently down due to a Typepad DDoS.

Here’s a video of Kate reading from her book.

Author: "Deirdre" Tags: "Important Things, LGBT, Medical, Sciento..."
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Date: Sunday, 20 Apr 2014 05:53

Scalzi has the full nomination list.

Look, I don’t vote in every category every time. I will be voting in a category I haven’t voted in before, though.

Natalie has some commentary (and quite a few comments) over on her site.

Me?

I vote for the work, not the person, but there are some people I’ll put last in the pile to read. If I run out of time before, oh well. Let’s just say that I’ve bounced out of the work of those on the slate that I’ve tried to read before and leave it at that.

What Am I Most Excited By?

Randall Munroe being nominated for Time.

Gravity.

What Omissions Am I Most Bummed By?

James Mickens.

Sharknado.

Yeah, I know. There are a lot of other things to complain about.

Author: "Deirdre" Tags: "Conventions, conventions, hugos"
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Date: Sunday, 20 Apr 2014 04:02

As someone who’s spent my whole life working mostly on one large project after another, you’d think novels wouldn’t be as hard for me to write as they actually are.

I had this glimpse into why: I generally had a sense, at all times, whether something was on the critical path—or not. There were desired features and planned expansions, but building them wasn’t part of my initial task. So there were clearly things on the critical path—and not. Generally, there was at least something of an order: I need to get pretty far along in X before I can test Y, so let’s write X first. I can work on Y if I’m stumped on X.

In a novel, generally all of the planned scenes need to be written because they’re interwoven. It’s all on the critical path.

Non-fiction’s different: some items may be optional. If they’re not written for the book itself, they can be re-used in other ways, like website content or newsletter content.

So I don’t necessarily have a sense of what I should work on next. The list is too large. Since I write out of order frequently that makes the problem set too large.

I’m going to have to think about this.

Author: "Deirdre" Tags: "Software Development, Writing, computers..."
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Date: Friday, 18 Apr 2014 08:35

We’re going to be going over mountains, so I take the special meds. I hate it with a burning passion, and you’ll understand why in a bit.

I take it because it increases oxygen concentration in the blood, which means less altitude sick. I get altitude sick in a ten story building. Only a slight exaggeration.

Four thousand feet is where I really start to feel it, though. Since I’m doing a lot of the driving, I take the damn meds.

I am not a morning person. I have not truly ever been a morning person (I quite literally lack the gene), but the last few years in particular I have especially not been a morning person. I was saying that to a friend who got run over by a car last year, and she said, “Because the pain meds have worn off!”

Exactly. That is why.

Every single day, it’s a challenge. Can I get part of my pain meds down before I make breakfast? Will I throw up my coffee? (Thankfully, that has not actually happened in a long time, but most mornings I’m nauseated from pain.)

I’d set the alarm for 10, wanted to leave by 11. Woke up at a quarter after 9 and packed. We pulled away at 11:11, which I consider close enough for government work.

Let me back up for a minute. When I was coming down the steps on our front porch—typically, doing this in the morning is my biggest physical challenge—in a race with a sloth, the sloth would have won. Honestly.

Fairfield: The Jelly Belly Factory

My mother, long a lover of jelly beans, has never been to the Jelly Belly factory. I’m not sure how that happened, but we decided that we had three places we could stop, and this was one we picked.

Why the able-bodied need to put photo op things and places where people should stand to take photos crossing the line from the handicap parking to the door, I’ll never know. I hear an irritated cluck. Look, it’s not my fucking fault that the big jelly bean is put in the wrong place, but I’m visibly having difficulty walking today. You think you could be more human and hold on a couple seconds without being irritated at something I have no control over?

Well, okay then. Well, not okay, but whatever. It’s on you.

We wander through the jelly beans. I think a grand total of two or three minutes has passed since I shambled (no exaggeration) through the front door and evaded the large group of people standing in line for the tour. Which, frankly, sounds like pure hell to me on a day like today.

My feet are on fire they say. I look down. There is no visible evidence of same.

I feel the weird electrical current that runs along my upper back. Left to right, then right to left.

It’s the altitude sickness meds. Diamox. Acetazolamide. There’s no good way to put this other than: it cockblocks pain meds. All pain meds, apparently. From personal experience, it blocks 75-100% of the effectiveness of everything I’ve tried.

Currently, with the myofasical pain, my leg muscles are so incredibly tight, I can barely walk, especially in the morning. Later in the day, I’m almost human, and sometimes my walk can pass for normal. Today is not one of those days.

I move as quickly as I can to the register (about 15 feet), plead with the lady there. Either I need to check out, or I’m dumping my item on the register counter and leaving. I’m not being mean; I desperately need to sit down. By this time, I’m white as a ghost and visibly shaking.

I’m paid up. Trying to leave. A kid darts in front of me. I’m like Gigantor with a bad hip algorithm, shambling with an odd gait I have no control over. When I’m like this, kids terrify me. I have nightmares that I trip over one and crush us both. I can’t stop or turn easily, nor can I stand easily. A slow walk is the only thing that keeps me from falling over. Kid’s mom pulls the kid back, and I sigh relief. He stares at me with huge brown eyes. I’m just as afraid of him as he is of me.

And—people do not understand. Sites aren’t laid out for people who are simply mobility impaired, especially where walking farther is a challenge. As an example, if there’s a good railing and four steps or fewer, I’ll usually take the steps rather than a handicap ramp simply because it’s shorter.

When I open the car door and plop in, I can’t do anything for about a minute. Finally, I start the car up.

We skip the second possible stop.

Corning: Olive Pit

Neither of us could remember exactly where the Olive Pit was. Collectively, we got the details right, though I did have a few mixed in from Granzella’s, where I’d never been.

I’d been there before, but I also remembered that the last time I’d bounced right back out. Given my experience earlier in the day, I wasn’t feeling very confident about it.

Still, it’s later in the day, my pain levels are a bit better, so I walk in. I manage to taste a couple of things, but I can’t even get to consider what I might want to buy before my feet are on fire again. Mom takes more time picking out her selections, but I head out to the car, once again white as a ghost and shaking. The store clerk brings out her jars of olives. Very nice of them.

By the time she’s back, I’ve recovered.

Dinner in Medford

We couldn’t find the place we’d eaten before, so we ate at a Shari’s just past most of Medford. I ordered a no-bun burger with their amazing stuffed hash browns, which are gooey and evil and you should only eat them if you like awesome things.

It was only a few more hours (argh) to Eugene, but that’s where we’re spending the night.

Tomorrow night, we’ll be on Vancouver Island.

Thankfully, I don’t have to take the evil altitude meds tomorrow, and their effects will have mostly worn off by morning.

Can’t. Wait.

Author: "Deirdre" Tags: "Medical, Travel, fibromyalgia, medical, ..."
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O, Canada   New window
Date: Thursday, 17 Apr 2014 04:40

Mom and I are going to drive up to Canada.

I’ve driven to Seattle before, and I’ve driven from Seattle to Vancouver before. However, the next stage is the ferry from Vancouver to Vancouver Island, which I’ve never taken (I’ve always flown).

I’ve also never been to Victoria before, so I’m excited that we’re going there, too, probably on the return. We may have some time for a quick visit on the way up or back, but I’m guessing that our timing is going to pretty much miss anything of interest in Portland. Seattle’s more possible.

Author: "Deirdre" Tags: "Family, Travel, family, travel"
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Date: Wednesday, 16 Apr 2014 07:41

Please feel free to repost. Or, if you know of other, similar posts/threads, to link to them in comments.

If you’re an author doing direct digital sales from a web site you manage/control (meaning in addition to whatever you’re doing through Amazon, B&N, iTunes, Kobo, Smashwords, Direct2Digital—or whatever)…

Questions for Authors Already Selling Directly

  1. What method are you using? Gumroad? Shopify? Easy Digital Downloads (plus WordPress)? WooCommerce? Sellfy? Some other?
  2. How’s that working out for you, and why did you make the choice you did?
  3. If you’re willing to share this information, what percentage of your total sales are direct sales?
  4. Has it been worth the hassle for you?

Questions for Authors Considering Selling Directly

  1. What programs have you looked into?
  2. Do you have any questions about the process?

For those who wonder why one would do such a thing, there are two primary reasons:

  1. If you have more than one thing to sell, you can offer custom discounts.
  2. You can offer them subscriptions to your email list; third-party vendors are completely transparent to you.
  3. Higher pay and faster payment.

For example, selling via EDD on my own site for a $3.99 book, I’d take home $3.52 today. If I sold the same book on Amazon, I’d receive $2.79 sixty days after the end of the sales month. For Nook, I’d receive $2.39 sixty days after the end of the sales month. For iTunes, $3.52 45 days after the end of the month. For Kobo, if the amount owing is > $150, then they pay monthly, otherwise every six months.

Obviously, $3.52 today sounds better, but it does require a savvy enough customer to sideload the book (drag to their reading application).

Author: "Deirdre" Tags: "Publishing, indie-publishing, self-publi..."
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Date: Tuesday, 15 Apr 2014 20:00

A friend of mine who’s a geek and I were talking about Heartbleed a couple of days ago. Said friend has never been a coder, and thus never really spent a significant time looking at memory dumps, unlike us old school programmers who have (especially back when we were, um, trying to argue with copy protection on games we owned back in the 80s when apps were traditionally copy protected).

So my friend said, “I don’t get why SSL certs have to be reissued.”

This friend doesn’t run SSL (nor do I). But I see exactly the gap that some technical people have.

Also, I haven’t heard a lot of people talking about the problem of non-obviously SSL security complications of the heartbleed attack, like password and cookie salts.

The short version of SSL is that there’s a public key, handed out to anyone who wants it, and a private key. This private key is not a file that the web server is supposed to be able to read. I’m not saying that this is never misconfigured, just standard practice is to only permit web servers to read files that web servers should send to other people.

The private key part of SSL is not one of those.

So, my friend was thinking, if it’s not something the web server can serve, how can that happen?

Because the private part of the SSL key needs to be in memory, at least temporarily, in order to decrypt an SSL request.

The heartbleed bug does spew random memory, which could include the server’s private key. Given that SSL servers decrypt often, it’s arguable that it’s more likely to be served than other contents of memory. Request frequently enough, and you’ll have the private key at some point. Piecing it together is another matter.

So here are a few other things you may not have thought of that you’ll need to change if you run a server that may have been compromised. By “may have been compromised,” I mean if it ran an affected version of SSL and served any SSL content, even if that content was just spacer.gif.

  1. Change salts for password hashes. This will force password changes (even for people who haven’t logged in recently). Yes, I’d hope that in this day and age, each user has a unique, contemporaneous to their account creation, password salt. However, I know this isn’t reality.
  2. If you run WordPress, you’ve got cookie salts in ~/wp-config.php Generate new ones. You can go here to get new random salts. If you don’t have random salts there, you should fix that.
  3. If you have cookie salts in other apps, change those. Yes, existing cookies will be invalidated….

For those who don’t know what salts are here’s the wikipedia page. Short version: they make cookies and password storage one-way encryptable. What this really means, though, is that if cookie/password salts are compromised, it’s far easier for them to pretend to be you.

Edited to add the following:

Researcher proves Heartbleed leaks SSL keys.
Cloudflare’s Heartbleed challenge—and winners.

Author: "Deirdre" Tags: "Security, Software, computers, security,..."
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Date: Saturday, 12 Apr 2014 09:40

For some years, I’ve been struggling with mis-identified causes of pain. It was believed that I had arthritis and fibromyalgia. Period.

As I’d been arguing, that covers less than half—and probably less than a quarter—of my pain most days. I finally have an accurate diagnosis: most of it is myofascial pain.

Both have sore spots, but the myo ones are where nerve enters muscle, and irritating them usually refers pain to a specific area. Fibro points tend to be near joints; irritating them doesn’t refer pain—but can make the whole body hurt non-specifically.

Put them together: irritate a myo trigger point, myo radiates pain to a fibro point and then you feel crappy all over. Win.

The really interesting thing for me is that I’ve known for years that my pain was inflammatory, and fibro isn’t (and myo is). So that answers that question, too.

The good news that now I have a real treatment plan.

Author: "Deirdre" Tags: "Medical, arthritis, fibromyalgia, medica..."
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Date: Thursday, 10 Apr 2014 23:21

Slowly becoming less of a fan of HipChat, it’s really no better than IRC with a proper client. –Matt Jarjoura

When I first looked at HipChat, I laughed. It looks, well, so 90s. Basically, it’s a revamp of IRC, where “revamp” means “we will charge you for it.”

The only reason you should pay money to them is one of the following:

  1. You don’t know how to set up an IRC server on some spare piece of office equipment and can’t be bothered to find anyone to help you.
  2. You need some obscure feature that’s not available on IRC or any of its addons.

Yep, that’s about it.

Essentially, HipChat and its ilk assume that you’ve never heard of IRC and are willing to pay to have private-ish conversations. They will never be as private as running your own IRC server.

If you don’t need that, you can get a dedicated channel on other servers, mark it private, invite people you want, and ban them if their status ever changes.

Why IRC Rocks

  1. The larger IRC networks are distributed, meaning everyone connects to a server closer to them. This does lead to netsplits, but it means that people can continue on even where one of the servers are down. In that sense, it’s designed like the Internet was intended: no single point of failure.
  2. IRC servers can be private. I’ve used them at several firms.
  3. You can do a seminar-style by making the channel moderated and requiring people to private message questions. Advantage of this format for the listeners is that they can private message each other, which many substitute chat types do not offer.
  4. You can make channels private.
  5. On most IRC networks, you can define a list of who’s an op (who has privilege to allow/disallow people on the channel), who can speak when the channel is moderated, and set those privileges so they persist without anyone on the channel. (And then there’s classic EFnet, which at least used to do none of these things.)
  6. IRC is extremely low bandwidth and fault tolerant. It assumes bad and slow connections. I have been in situations where no-image web pages wouldn’t load, email wouldn’t load, but IRC worked just fine. (Especially on ships using satellite internet.)
  7. Every operating system, even those without any graphical interfaces, still in use has at least one IRC client. Got an old Timex Sinclair?
  8. The biggest thing HipChat offers that IRC doesn’t typically out of the box is chat history, but there are even approaches for that using channel bots.

For Mac and iOS users, the best IRC software is Colloquy.

Author: "Deirdre" Tags: "Software, Internet, software"
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Date: Monday, 07 Apr 2014 15:11

Four months ago, I posted this commentary and critique of Box’s “Working at Box” page.

It got back to me that it created quite a stir, but I hadn’t checked back on the page recently. I have noticed incoming links to that blog post, so I wondered what was up.

Credit where due, Box has revised the underlying page.

Thank you! Nice improvement.

Author: "Deirdre" Tags: "Sexism, Software Development, computers,..."
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Date: Sunday, 06 Apr 2014 05:44

Most of the time when people talk about their time in Scientology, they’ve been out for a few years. Until then, most people just are too shell-shocked trying to process their experiences and what they mean.

Recently, Jillian Schlesinger came out of the Sea Org. I missed this particular article and only watched her video, but the article’s interesting for me for the following part:

Jillian Schlesinger tells me she began taking Scientology courses at only about 12 years of age. Her parents, John and Paula, had both been Sea Org workers before she was born, but had left the Sea Org and were still “public” Scientologists — meaning they were still members in good standing, but they didn’t work for the church.

Jillian had been born in Los Angeles, but by the time she started classes she was living in Orange County and went to the “org” in Tustin. Even then, at 12, she began to feel the pressure of joining staff or making the ultimate commitment — joining the Sea Org. After helping out as a volunteer with youth groups, at 15, she decided to join the OC org staff.

She was assigned to work for the org’s “Department of Special Affairs.” The DSA was the local version of the Office of Special Affairs, Scientology’s notorious intelligence operation and spy wing.

I worked there in Tustin, and there was a Paula who was Sea Org; she was the Flag Rep. Which, frankly sounded like a horrible job.

If they hadn’t moved the office, then Jillian worked in the office next door to the one I used to work in. She came in through the same doorway to pick up her pay each week, probably getting it from my old boss.

That’s just incredibly strange to me.

Before I link to Jillian’s videos, I also want to say what an incredibly awesome job Karen de la Carriere is doing interviewing people who’ve left. Karen is the ex-wife of Heber Jentzsch, still nominally the President of the Church of Scientology even though he’s lived in The Hole for years and previously said, “I’ll never get out of here alive.”

Here are Jillian’s three videos with Karen:

Author: "Deirdre" Tags: "Scientology, scientology"
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Date: Sunday, 06 Apr 2014 03:30

I haven’t really ever talked about how much pain I’m in publicly. But I’m going to now, because I have just started in a pain management program. For the first time in many years, I think I’m making real progress.

When asked how long I’ve had chronic pain, it’s hard to answer. I remember not doing things because I hurt too much when I was a teenager. Some of that was when I was 13. I remember times when I was so sore I could barely move before tap dancing class.

I remember when I seriously took up ice skating when I was 20 that even putting the boots on my feet hurt incredibly. And it got worse, but I still did it. I remember fracturing my wrist in a fall because someone else was being an idiot on the ice. I put my hand out (sigh) to break the fall, and the friction from that was so intense that it burned the imprint of the knit pattern on the glove into my hand for two weeks. That wrist was sore for years, and the rest of me didn’t feel so hot for quite a while, either.

Then there was the time I fell down the staircase at my office. My partner and I were running a partnership then. I landed on my chin, did some horrible things to my jaw, and it was pretty awful. The chiropractor who put my jaw back into whack said, “You’re gonna scream.” Despite not wanting to, he was right. I did.

I also remember the fall on the ice when I lived in Vermont. The fall from which my knee has never quite been the same. Didn’t help that I severely re-injured it a couple of years ago falling outside a church in Norway.

What I can’t remember is not having debilitating chronic pain. I’ve had it since I was a teenager. I hid it the entire time I was in Scientology, because only degraded beings were in chronic pain. You were treated better if you pretended you weren’t chronically ill. (I also had other chronic illness things going on then, but that’s another story for another time.)

Putting a label on it and developing an effective treatment plan for it, though, that’s another problem entirely.

What’s been clear to me for years is that I have super-tight muscles. My ginormous calves have no real significant fat on them, just bone and tense muscle. When I was a teenager, I remember finding a painful lump in my thigh muscle, afraid it was cancer or something.

No, it was just a sign of what was to come.

Eighteen years ago, I was diagnosed with fibromyalgia. Painful when poked in the typical places? Check. Over the years, I’ve become increasingly dissatisfied with the diagnosis because fibromyalgia doesn’t actually describe my day-to-day pain very well.

Ever tried to argue with a diagnosis that seemed set in stone? Going to a rheumatologist in 2011 got it firmly entrenched on my chart, which was even more frustrating.

It was like “You have fibro. We are done.” And, “I can’t prescribe (this medication that helps your pain) because that doesn’t work on fibro.”

Incredibly. Frustrating.

And yet, I do understand Occam’s razor, it’s just that Occam’s razor suggested it had to be something else because reasons.

That led to rounds of doctor shopping (and firing) until I happened to get the right one in December. The one who told me that Kaiser had a pain clinic and actually referred me to it. Which I went to a week and a half ago.

Joke’s on Me

So, guess what?

I do have fibro.

I was right, though, that’s not the major source of my pain. What is?

Myofascial pain. From the Wikipedia page:

In fibromyalgia, chronic pain and hyperirritability are pervasive. By contrast, while MPS [Myofascial pain syndrome] pain may affect many parts of the body, it is still limited to trigger points and hot spots of referred pain.

So, I have both pervasive chronic pain (from fibro) and irritable trigger points (from fibro and myo) and referred pain (from myo). I’ll tell you right now, that referred pain covers huge swaths of my body.

The myo explains so much. The muscle tension in my neck and head is so severe that it can change my vision (I have gotten diagnostic imaging for this, btw, it really isn’t visible on a scan). This led to uncomfortable conversations that basically boiled down to, “Oh, you’re fat. Therefore it must be diabetes and therefore macular degeneration.” Even though macular degeneration doesn’t describe the reported symptoms at all.

Some days I’ve had shooting pain, and I was wondering if I needed another cardiac look-see. That’s apparently not unusual. But you say, “If I stand too long on my feet on a hard surface, I get shooting pains up my body.” And a doctor sees you’re fat and therefore it must be diabetes (even when your sugar numbers are and have been normal) and the specific symptoms don’t describe diabetic neuropathy. Nor could you possibly have had diabetes long enough to get diabetic neuropathy, because if you’ve been paying attention, you don’t get that far that quickly.

In other words, everything was reduced to: 1) you are fat; 2) you have fibro; 3) you must have had diabetes for like a decade to get your nerves in this shape even though the blood tests don’t agree; 4) can’t see anything on the scans, so it must not be serious.

So I’ve had all this diagnostic imaging and ignored symptoms for years (including the imaging for both head and heart)—and yet no one picked up what it was. Until now.

What This Means in Practice

On a day-to-day basis, here’s the reality I face—and have for years. I wake up with enough pain to be nauseated. I have medication for that, but I can’t take it on an empty stomach because it makes it more likely that I’ll throw it up. Apart from the not-wanting-to-throw-up part, if you throw up partly digested medication, what’s the right dose to take to replace it?

So, I have to take pain meds with food. Coffee works pretty well as an anti-nauseant for me, actually, so long as I drink it with milk. So: coffee first, pain meds with coffee, cook the breakfast, then eat to stabilize the stomach against the meds. Then, and only then, can I do other morning things like taking a shower and getting dressed, because it hurts too much to stand in the shower before the medication starts to kick in. The shower helps reduce pain once I’m to the point where I can handle it.

Only after all of that can I walk like something even vaguely approaching a normal person, though the myofascial muscle tension is typically still a problem. It gives me a strange gait at times. We ruled out MS, but that was one of the things I’d been worried about, given that my capability to walk is so random, even within the same day. Sometimes, even within the same hour.

And Then There’s Yesterday

So I’ve been doing better after a medication change that the pain clinic doc put me on. The other day, I forgot pain meds for the first three hours I was awake.

Yesterday, I took a shower first, then walked (almost like a normal person) to make coffee. Only as I was standing there making coffee did I realize how remarkable that was.

Of course, by the time breakfast was ready, I was shaking. It’s still progress, though.

Author: "Deirdre" Tags: "Medical, medical"
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Date: Saturday, 05 Apr 2014 13:27

Season 2 of the web series One Step Closer to Home is filming in Australia. So. I’ve. Been. Told.

It’s a show about a newlywed couple trying to figure out all the normal stuff in life, like where to find the art for the living room and how to fit sex into the schedule.

Oh, and if you liked Season 2 of Fairly Legal with Ryan Johnson as Ben Grogan, here he is with his more typical accent.

Here’s the web site.

Author: "Deirdre" Tags: "Amusements, tv"
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Date: Saturday, 05 Apr 2014 12:48

Pretty good introduction to some of the big issues from a non-Scientologist’s perspective. Interesting that they cover Operation Snow White but don’t mention that Hubbard’s wife served time for that.

Author: "Deirdre" Tags: "Scientology, scientology"
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Date: Tuesday, 01 Apr 2014 05:08

Marriage Hats was a thin booklet written by L. Ron Hubbard’s last wife, Mary Sue Hubbard. It was published in 1974 by Scientology, a white volume with black uncial type on the cover. Later, they’d pull all Scientology-related books that weren’t written by LRH, and this would be one of items pulled.

This was published well after the concept of equal opportunity for women was embodied in law (though not in practice) in the United States.

So, let’s look at how enlightened Scientology was in 1974, shall we? Let’s look at five (of 23) directives for women are in marriage:

9. To support your husband in life by providing him with a clean, calm, happy home in which he can have the rest and peace necessary to fortify him in the battles of winning a living. [::facepalm::]

11. To keep an active interest in your husband’s work and to offer him encouragement and moral support. [Encouragement and support I agree with, but I'm not my husband, nor should I feel obligated to be interested in his work.]

12. To submit to the decision of your husband if agreement cannot be reached: he is the leader of the family. [No.]

14. To care for birth control and to be responsible.There can be nothing more upsetting to married life than an unwanted pregnancy or too many children. So don’t make mistakes; such surprises can be most disruptive. [So it's always the woman's fault.]

15. To keep yourself clean, attractive and womanly. A wife should always look the best she can for her husband – this doesn’t mean that you have to appear glamorous when you’re in the middle of scrubbing a dirty floor, but it does mean that a wife should care enough about her appearance not to come before her husband in the morning with cream on her face and rollers in her hair. It’s wise to do those beauty actions when your husband is not around, so you can be beautiful when he is present. [For L. Ron Hubbard. I don't even.]

And how well did that work for MSH, as she was known?

She was the primary defendant in Operation Snow White, the largest civilian infiltration into US Government systems in history. She was sentenced to five years in prison.

Meanwhile, L. Ron Hubbard remained on the run throughout the remainder of his life and never rose above the level of unindicted co-conspirator.

I guess she supported him, all right.

Author: "Deirdre" Tags: "Scientology, faith, scientology"
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Date: Monday, 31 Mar 2014 07:32

This is a really great report of a panel at a Supernatural con.

Sebastian Roché has the attention span of a fruit fly on meth[...].

And, about a prior con:

Misha comes on stage with a small pig, because why not?

Author: "Deirdre" Tags: "Amusements, conventions, humor, tv"
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Date: Saturday, 29 Mar 2014 10:51

Remember that awesome Air Tahiti Nui video? (If not, you really should watch it. Amazing stuff.)

The guy who did the techno soundtrack, Edmond Huszar aka OVERWERK, is a Canadian who’s up for a 10k music prize. He’s currently leading in voting, but others have been pulling in their fans. Voting closes in two days. Here’s the link if you’re so inclined.

Most of his work is at this link on Soundcloud. My favo(u)rites are: Daybreak (used in the Air Tahiti Nui video), Conquer, and his remixes of Werk Me and Space Junk.

Because of the video and his music, when Rick and I rented a car for the day in Tahiti, we spent the whole day listening to Overwerk.

Author: "Deirdre" Tags: "Music, music"
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Date: Thursday, 27 Mar 2014 08:53

I haven’t updated the spreadsheet I pulled a few weeks ago, but here are the numbers from the last I pulled.

There are some data quality problems here. The low end of people who say they’re making a living writing? I don’t think $450 is a likely real response. Likewise, some of the higher numbers from people who say they’re not making a living writing would be perfectly respectable incomes for many. I’m not judging people’s responses here, just pointing out that there may have been some incorrect yes/no responses.

And, as always, this is self-reported data, so take it with a grain of salt.

Authors Saying they Make a Living Writing

Type # 25% 50% 75% 90% 95% 100%
Self 160 25,000 51,000 140,000 305,000 500,000 13,000,000
Hybrid 103 55,000 103,000 235,000 540,000 1,025,000 3,663,000
Trad 27 18,300 55,000 100,000 215,000 250,000 450,000

Authors Who Say They’re Not Make a Living Writing

Type # 25% 50% 75% 90% 95% 100%
Self 571 150 800 5000 15,000 24,000 113,000
Hybrid 78 2,300 10,200 20,000 40,008 50,000 89,150
Trad 54 500 4,000 17,500 35,000 50,000 60,000
Author: "Deirdre" Tags: "Publishing, indie-publishing, publishing..."
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