Nom de Plume

I acquired some kefir grains a while ago, and boy, do they expand. So anyone who wants some, let me know and I’ll hook you up.

This summer, I’ve wended my way through a long series of completely forgettable books–aside from Harry Potter, of course– and so haven’t felt compelled to post reviews of anything. But my luck has turned! A few weeks ago, Steve and I went downtown and hit Elliott Bay. Lo and behold, I hit the kiddie lit mother lode. Actually, I only bought two (the rest are on hold at the library), and one of them was a complete dud (Adam Gopnik’s “The King in the Window”). But Jeanette Winterson’s “Tanglewreck”–well!

The time tornadoes are raging when Abel Darwater pulls up to the old house Tanglewreck, where Silver lives with her horrible guardian aunt. He’s looking for the Timekeeper, a mysterious clock that will allow him to control time forever. He whisks Silver and her aunt off to London, still trying to wheedle information out of Silver–who escapes into the underground world of the Throwbacks. Along with her Throwback friend Gabriel, Silver goes on a quest to find the Timekeeper, where she runs into clever plays on words, imaginative representations of particle physics, a commentary on commercialization, and a whole host of other adventures that are surprisingly sophisticated yet still palatable to a younger audience

I don’t really know how to describe Tanglewreck, except to say that it’s a little “His Dark Materials,” a touch “A Wrinkle in Time,” and a smidge “The Phantom Tollbooth.” But we all know that comparisons are odious, and this is wholly its own imaginative work. Highly recommend.

A three-columned template, which is something I’ve been seeking for, like, three years.

The only thing I don’t like about this (other than the niggling little details, which even I can fix) is that when you click on categories, or archives, or search, it comes up with incomplete posts appended with a “read more.” Personally, I find the need to click and click and click some more to be only slightly less irritating than reversed out 5 pt type on a black background. So if there are any wordpress gurus out there, PLEASE tell me how to modify. I can’t pay you, but I’ll send you some handmade soap …

It’s nearly 3 in the morning and the only reason I’m awake is so I can get all my work done and Steve and I can go on our what-is-becoming a routine-late-August vacation tomorrow. Which essentially means that I needed a little procrastination before I get cranking again. Which led to a “short perusal” of google analytics. Which, of course, led to a whole half hour wasted. Which in its turn led to this blog post. So let me begin and stop nattering away.

I am shocked–SHOCKED–at how many hits I’m getting on various google combos of vitiligo with vitamin d, tyrosine, vitamin c, deficiency and so on. Not, you understand, that I don’t want you here or begrudge any information–quite the opposite, in fact. Welcome, grab a chair. Oh you probably already have one. I forgot; it’s appallingly late at night, or early in the morning depending on how you look at it.

No, what shocks me is that there’s very little readily accessible vitiligo information that deals with various vitamin, mineral, amino acid, yaddah yaddah deficiencies (except for the b vitamins and copper). And when anyone connects the dots and says, “Wait! Vitamin D is implicated in autoimmunity! Vitiligo is an autoimmune disease!” what they end up getting is my site. If you google vitiligo and vitamin D deficiency, I’m ninth.

That’s scary.

And it’s frustrating becuase unless you’re an obsessive researcher, you’ll probably believe what your dermatologist tells you–that protopic, corticosteroids, and so one are the only method of treatment.

So for the record, here are some guidelines for what I’ve learned about vitiligo sources (and some other general information) from my obsessive researching:

1. Pubmed is your friend. Except when you don’t understand it, which, alas, is much of the time. You can read all sorts of scientific abstracts, and if you’re in any doubt that vitamin D deficiency may cause vitiligo, please research autoimmunity and vitamin D at www.pubmed.com. There’s a mother lode. Incidentally, if you chance upon the vitamin D council web site and decide to e-mail all its research scientists whether they know of any published research between vitiligo and vitamin D, or whether they can hypothesize, I will save you the trouble. All, save one, will send you nice, short e-mails talking about a vitamin D analogue topical cream. Totally different. It was very nice of them, and they took the time out of their day. The remaining one will write you a very, very thoughtful e-mail saying that he has a grad student with vitiligo and has wondered the same thing. BTW, I was (am?) deficient in vitamin D and am taking a whopping 5,000 IU a day.

2. Vitiligosupport.com is also your friend. Although there are a lot of people who genuinely believe that rubbing unadulterated bergamot oil and then going out in the sun is a good idea, there is a lot of great info and very, very supportive people. Also, great success stories for those days when you just feel like curling up in a ball and crying. Registration is free, but the $25 bucks to be a supporting member is well worth it, just to be able to see the photo albums of people repigmenting.

3. Tyrosine is phenylalanine. A lot of naturopathic, complementary, and alternative vitiligo treatments include l-phenylalaninewith quite a bit of success. This stuff converts to l-tyrosine in your body (as well as other stuff). When tyrosine oxidizes, it reacts with copper to create melanin, i.e., pigment. Please excuse the simplistic, and probably not completely accurate, description; my point is merely that phenylalanine is often used, but it’s essentially the same thing as tyrosine. My naturopath is in love with tyrosine for whatever reason (he uses it himself), so that’s what I’m talking. I think either would work. If there’s anyone out there who can correct me, please do. I have wondered why more places just don’t go directly to the tyrosine.

4. Sunlight or nUVB. Your dermatologist will probably tell you to stay out of the sun, especially if you’re using protopic. As far as I’ve been able to tell, no treatment works without it. In fact, some studies show that b12 and folic acid with sunlight or nUVB alone work–without any of the other stuff. Getting tan sucks because it makes your spots show up more (and you see more of them), but my face has almost completely repigmented in the month that I’ve allowed myself to get sun. And we’re not talking a lot–lying out in the sun for 15-20 minutes 3-4 times a week.

5. Snake oils may work–but don’t waste your money. There are lots of “guaranteed cures” out there. Alas, with vitiligo, nothing is guaranteed, except the fact that, as one googler put it, “vitiligo sucks.” Well put. Now, I think some of these probably DO work, because as far as I can tell, they all work on the same principal: Photosensitization. Remember that whole sunlight thing? A lot of people find that if they get the spots pink, pigment starts coming back. A lot find that if they get the spots burned, it comes back even faster. Bergamot essential oil, psoralea, khalla, and a whole bunch of other stuff makes you more sensitive to sun, ergo you pink faster, ergo you repigment. Personally, I haven’t reached this frustration level yet, but who knows? I may just yet. But the point is, you can make something that will fry you to a crisp much more easily and cheaply than sending off to India for it. Plus, your packaging will probably be nicer.

6. Vitamin C confuses me. Dr. Montes (who wrote a book on a nutritional approach to vitiligo) has his patients on massive amounts of vitamin C. Over on vitiligosupport.com, I’ve discovered that many people find their spots spread with vitiligo. As for me, the jury’s still out, so I’m confused on this one.

7. Expect to educate your doctor–and never settle. I was dissatisfied with my dermatologist, which I’m discovering is far from unusual, and went to a naturopath to get complete tests. Best move ever. I love the naturopath and his resident. At this point, though, I know more about vitiligo than they do; they, quite happily concur. In fact, as they say, “You are your own best doctor.” It’s true.

8. You can always depigment. This has been strangely comforting to me, but if you get really really bad, you can always depigment. I’ve seen pictures of people who have done it, and they look pale, but not oddly so.

“Harry can’t play with Sasha and Willy any more,” Steve said this morning.

“Why?” I asked, rubbing the sleep out of my eyes and preparing to stagger into the kitchen for coffee.

“They’re a bad influence.”

Indeed. Mr Potsticker pulled the flour off the bottom shelf and proceeded to wreak havoc.

And as if that weren’t enough, he also started licking it off the floor.

Remember how you were a kid and made paste out of glue? Harry discovered that if you lick up enough flour, you’ll eventually glue your mouth shut.

Actually, I’m not crying. Quite the contrary. But you’re all probably tired about hearing about the vitiligo, to which I say tough schmoodies. So here it is: MY FACE IS ALMOST COMPLETELY REPIGMENTED.

I just bought this Toshi Yoshida …

… and this Kiyoshi Nagai …

… and it occurs to me that I haven’t posted any of the prints I’ve bought in the past 6 to 8 months. So here they are.

A Mikumo print–which confuses me, because I thought Mikumo was a publisher. I like this print, but the main reason I bought it was because my great aunt Elaine had it. It reminds me of her little house in San Diego, with the huge deck built into a little green canyon.

I think I’m over the Tokuriki phase. The prints are quite pleasant, but some of them are just not very appealing. Like this one:

On the other hand, I really like this little Teruhide Kato:

Ditto Maekawa Senpan:

And I don’t really know why I ended up getting these three Kaoru Kawano prints at that auction house I like going to–other than the fact that they were dirt cheap. I don’t like Kawano. Every time I look at them, I get a creepy feeling. But here they are:

I’m dogsitting for Nicki while she’s in Italy. Willie’s eye was all goopy (it was cheatgrass, embedded in his eye, owie), so I took him to the vet, where I started talking to a woman who fosters pugs for Seattle Pug Rescue. I’ve been meaning to volunteer for ages–but first Harry got sick, then I forgot about it, then we did a stint of traveling, then I forgot about it again. Anyway, I sent in the application, and then informed Steve that we might be a pug foster family. I think he’s a bit excited about having another pug because 1) he called me this afternoon just to tell me that he saw an adorable pug puppy and 2) he started trawling youtube for pug videos. He CLAIMS there was a link from yahoo. Wink. Wink.

Anyway, he came across this. Which had us ROLLING.

And then we found this … pure pug porn:

So this afternoon, I’m heading down Rainier Ave into Renton. Traffic is awful, all backed up because of Seafair, and of course, there’s the idiot who decides that he needs to head down the center turn lane and bypass the traffic. The rest of us mere mortals just inch along.

Finally, I see the erring minivan pull over into a parking lot. I briefly indulge that fantasy that we all of have, you know, the one where we pull over and let the person have it, thus changing their ways forever. I float in a reverie of changing drivers around the world–traffic bypassers, humvees squeezed in compact parking spots … okay, let’s be honest, I really want to take out my Seafair anger on someone. And maybe he has his pregnant, about-to-deliver wife in the car. Or some other emergency.

And of course, I do nothing. But, as I am stuck in a long line of slow-moving cars, I get a good glimpse of the person. He’s standing in front of the open hood, which is unfurling great plumes of smoke. Oh, I think. It was an emergency.

And then I see he’s not wearing pants.

And then I see that his pants are around his ankles.

And then I see that he’s fumbling with his tightie whities.

And then …

And then …

And then, he pees on the engine.

What?

WHAT?

I can’t hear you!

No, I’m not deaf.

Well, not YET.

I can’t hear over the freaking PLANES.

I loathe, despise, and abominate Seafair. You wouldn’t believe the noise of the planes. It seriously hurts your ears, it’s that loud.

The sad thing is, Seafair hasn’t even started yet. This is what we have in store:

Friday
11:00 a.m. KeyBank Air Show presented by Boeing

1:00 p.m. American Family Insurance presents the Patriots Jet Demonstration Team

1:20 p.m. Fat Albert C-130 Demo

1:30 p.m. U.S. Navy Blue Angels Practice

2:40 p.m. KeyBank Air Show presented by Boeing

Saturday

12:35 p.m. KeyBank Air Show presented by Boeing

1:00 p.m. American Family Insurance presents the Patriots Jet Demonstration Team

1:20 p.m. Fat Albert C-130 Demo

1:30 p.m. U.S. Navy Blue Angels Demonstration

3:25 p.m. KeyBank Air Show presented by Boeing

Sunday

10:00 a.m. KeyBank Air Show presented by Boeing

11:20 a.m. KeyBank Air Show presented by Boeing

1:00 p.m. American Family Insurance presents the Patriots Jet Demonstration Team

1:20 p.m. Fat Albert C-130 Demo

1:30 p.m. U.S. Navy Blue Angels Demonstration

2:55 p.m. KeyBank Air Show presented by Boeing

AHHHH.

My bleeding ears aside, isn’t this a tad excessive? Oh, no, not at all. Let’s burn through all those fossil fuels. So much for Seattle trying to be a green city.

I despise Seafair. It’s fine if you can get away from it, but when you live in south Seattle, you can’t. The traffic. The crowds. And those infernal air shows. Which are loud, and distracting, and set all the dogs in the neighborhood off in a frenzy of barking.

I wanted a vegetable jungle; I got a vegetable jungle. I have corn, more lettuces than we can eat (they’re bolting), kale, regular cucumbers and round cucumbers, eggplant, pumpkin, zucchini, and the about 10 tomato plants, all marching down the walkway. You don’t really get an idea of how insane and overgrown this is from the pictures.

Looking down the path:

The other way:

Pumpkins!

Cucumbers:

Kale garden:

“Cost is no object,” Steve said grandly. “We’ll get whatever we like the best.”

Well, alrighty then. If you twist my arm.

So we’re getting slate:

link

Which is how the pigment starts coming back in vitiliginous spots. Freckles appear until they form islands of color, which then all hopefully connect. The good news is that after starting the sun exposure, my face is really freckling in. The first week or so of getting sun (10-20 minutes a day, three or four times a week), I would come inside and want to cry because the darkening regular skin really highlights the white bits. But I’ve stuck with it, and it’s really working–and working fast. I no longer feel weird about going outside without makeup on. I look blotchy, but then, I’ve always been blotchy.

The bad news is that I’m still in the active progression stage. It’s getting worse on my shins and underarms. I also have spots on my inner forearms that first started appearing a little over a month ago and are pretty much growing every day. And of course, it’s hard to tell what’s new and growing, and what is just more obvious because I’m getting tanner. It’s a bit of both–but the sad fact is that it is spreading. Strangely, it seems to get worse faster on the areas I’m applying Protopic. I don’t know whether it’s coincidental or not. On www.vitiligosupport.com–a great, great site–many people say that the think it gets worse with Protopic before it gets better. So, as of three days ago, I’m conducting an experiment. I have a tube of Dovonax–a topical vitamin D analogue that works in conjunction with sun exposure–that I’m using on my shins and underarms. We’ll see.

I’m also in the process of getting a home narrowband UVB thing, so I can continue with the phototherapy over the winter. Dealing with insurance is a nightmare, and I will spare you the horrors, particularly as it seems that my last many posts have been incredibly negative. Well, I’ve been feeling pretty negative, so there you have it. But I just keep reminding myself that my face IS repigmenting and that’s a really, really good thing.

By the way, I also ordered a book called Vitiligo, Current Knowledge and Nutritional Therapy, written by an Argentinian doctor who has seen incredible results using a combination of b12, folic acid, and vitamin c. I’ve upped my dose of folic acid to his recommended levels–5 mg a day (his minimum). His treatment takes a really long time, but it is used without sun exposure. That german clinic I mentioned before uses a similar approach.