Nom de Plume

but very funny.

I hate the sun.

It’s weird, I know, but really, I don’t enjoy being out in the sun. Living in the Pacific Northwest is perfect for me, with oodles of rain and lots of cloudy days. Steve, who loves the sun, thinks this is weird–and he has been contending that all my skin woes are because I’m deficient in vitamin D.

Turns out, he’s right.

The naturopath called to tell me my test results were back. Most things looked pretty good, but there are a few things, she said, that needed to be tweaked. We all know I’m a worrywart, so I asked what they are. So first off, I’m deficient in vitamin D. My protein was a little low, and my cholesterol, she said, was too low. (I never knew cholesterol could be too low.) Also, my DHEA levels were high, and she said she was going to look at my testosterone levels and cortisol levels. She said that there was probably some hormonal stuff going on. I don’t really understand that whole DHEA thing (apparently, many vitiligo sufferers have low DHEA), but the followup appointment is week after next where we’ll go through it all.

What is really interesting though is the vitamin D stuff. I couldn’t find anything from a google search on vitamin D deficiency and vitiligo–but when I changed the search to vitamin D deficiency and autoimmune, a bunch of research started coming up. To begin with:

Immunity

Vitamin D in the form of 1,25(OH)2D is a potent immune system modulator. The VDR is expressed by most cells of the immune system, including T cells and antigen-presenting cells, such as dendritic cells and macrophages (6). Macrophages also produce the 25(OH)D3-1-hydroxylase enzyme that converts 25(OH)D to 1,25(OH)2D (7). There is considerable scientific evidence that 1,25(OH)2D has a variety of effects on immune system function that may enhance innate immunity and inhibit the development of autoimmunity (8).

Then, I found this study, which is fascinating: Vitamin D: its role and uses in immunology

And then I found this site, which lists recent vitamin D and autoimmune research.

There’s a lot more too–and while I haven’t been able to find any studies directly linking vitiligo to vitamin D, the fact that it’s classified as an autoimmune disease suggests that there may be a correlation, just that it hasn’t been explored fully. Most studies focus on the debilitating autoimmune diseases.

So that’s where we are today; I’m feeling pretty hopeful.

No one wants soap? I think my feelings are hurt! Seriously, please … take some off my hands.

So I’ve been making soap like there’s no tomorrow. I’m up to ears in it. Steve is threatening divorce. Well, that’s probably because a. I set the kitchen on fire the other day; and b. apparently the source of the kitchen drain clog was unsaponified soap from when I used to clean out all the pots as soon as I made the stuff. Anyway, does anyone want some? Let me know what flavors you like, and I’ll send you a little soapy care package.

Which I reread last night, curled up in bed with my Petzel headlamp because Steve was asleep. It was instant childhood revisited. I always pictured Harriet’s bedroom and tiny bathroom as my bedroom and tiny bathroom in our house in Bucharest. It was at the top of a large three story house, and I was the only one up there in a rabbity warren maze of narrow halls and small rooms.

As a kid, it always outraged me that Harriet got blamed for other people reading her notebook. My feeling was always that yeah, they’re curious, but if they ignored the PRIVATE signs emblazoned on it, they deserved what they got. Pure and simple. On rereading it, I still felt that way–Ole Golly was the only adult who makes any sense on what she has to say about it–but more than that, I was struck by how absent Harriet’s parents are. Actually, all the parents are pretty absent, from Sport’s checked out father to Janie’s ineffectual mother. It’s kind of like Charlie Brown adults and their mwah mwah conversations; the parents are there, but they’re not present.

Which all leads to the question: Is Fitzhugh showing the separate world that children inhabit, or is she making a statement on all these parents? I can’t tell. Can you?

I think the hardest thing about vitiligo is not knowing how it’s going to progress. And coupled with my general paranoia, it’s hard to know what’s really fading and what’s my imagination. It seems to me that it’s spreading on my face and getting whiter–but it could also be more sun (I went white water rafting on Friday and even though I am very careful to wear sunscreen, still soak up sun). Steve says he doesn’t notice it, that I’ve always been this blotchy, but I don’t know. I think it’s worse. Also, his idea of support–bless his heart for trying–is to deny that it’s a problem. I teeter between sheer relief that it’s mainly noticeable to me and anger that he refuses to see that this is a real condition. But he tries, and that’s one important thing. And it doesn’t bother him in the slightest, and that’s another. I can see clear as day how this might affect our relationship–not the vitiligo itself, but how I feel about it and myself. Yesterday, he saw me putting on makeup and asked why I didn’t just let my skin breathe on the weekend. I told him that I hate looking in the mirror without it. He staunchly said, “It doesn’t look any different to me.” What’s not to love about a partner who does this? (And who hooks up the kitchen faucet and reconnects the dishwasher to boot?)

Vitiligo affects 1-2% of the population, and it affects all races equally. It’s just more noticeable in darker skinned people. I’m fortunate that I am not super dark. Even so, if it affects 1 or 2 people out of a hundred, why is it that I don’t encounter it more often? I remember seeing some people in India years ago with it, and I had an African-American professor in college who had some patches on his hands. But that’s pretty much it. People are coming out of the woodwork though; whenever it’s mentioned, people mention someone they know who has it. My neighbor Nicki came home from her weekend in Portland and told me, “My friend has what you have!” Her friend told me to contact her if I need support, and that’s been wonderful. I should probably go to a support group, but I don’t know if I’m up for that yet.

There are spokespeople for everything. Breast cancer. Prostate cancer. Incontinence. Impotence. Why are there no spokespeople for this thing? The closest we’ve come is Michael Jackson, and let’s be frank: He’s not a good representative of normal people who live with vitiligo. He’s not really a good spokesperson for anything. It’s sad that he’s done so much to himself that people question whether he really has vitiligo and chose to depigment himself because it was so severe or just wanted to be white.

This is not a pitiful post, begging for sympathy. Even though I know that this is something I’m going to have to live with, I’m not going down fighting. To be honest, I really like my dermatologist, but felt she was abrupt. She did have me tested for thyroid stuff because about 20% of vitiligo sufferers also have autoimmune thyroid conditions. The test was fine–but I’ve also read that vitiligo sufferers can be low in B vitamins and copper. Vitiligo can be a sign of pernicious anemia, which can prevent absorption of vitamins and minerals. There was a very small study that showed that gingko biloba can help slow the progression. Anyway, the medical approach seems to be to treat the symptoms, so I went to a naturopath last Wednesday. On Thursday, I went to give blood and urine samples, and they’re testing everything. I should be able to go back in a few days to see what the results are. I know it is really perverse to hope for odd levels of vitamins or whatever, but I do.

Looks like my mother might be appearing on This American Life to talk about Iraq.

Please, please stop hotlinking images. It’s obnoxious. More than that, I really don’t want to be associated in any way, shape, or form to your stupid page with pictures of you pouting in front of a mirror with a digital camera. I don’t want to hear “Don’t you wish your girlfriend was hot like me” pounding out of my laptop speakers as all your stupid little friends are all, like, “I luv u 4ever!!!!!” and “OMG, you are soooooooooooooo hotttttttttt!!!!!!!”

And believe me when I say that the world does not need to be exposed to your whale tail.

You have singlehandedly set the women’s movement back about 4 million years. I never once thought I would ever say this, but you know what? You are asking for it. Seriously.

You’re embarrassed by your parents? That’s nothing compared to what you’re going to face. In 15 years, your children–who will be parents themselves if they follow your example–are going to be so appalled at what you’ve allowed everyone to see that they’ll become born agains just to rebel.

Yeah, yeah, I know. If MySpace were a country it would be the 11th largest in the world. Unfortunately, Bush wouldn’t be able to go in swinging his WMD argument because he’d know that it was too stupid a nation to have WMDs. Though come to think of it, he probably has a page there. But that’s a digression from my main point, which is, quite simply this: You are scary, scary people. Now stop stealing my bandwidth.

Mr. Demo, that is. Not God.

Still no dishwaster. I had one, and it was wonderful. Now I’m washing dishes in the bathtub again.

Which really sucks.

We won’t even talk about the division of labor. Suffice it to say that I have descended to the level of leaving his dirty glasses in the bathtub so that when he comes home and wants to take a shower, he gets a little hint. The first day, he laughed. The second day he said, “Looks like you have some dishes to do.” Today’s the third day. What’s in store now?

I stumbled across this somewhere, and if you need to waste two minutes, here it is … five minutes if you blog it. Google “[your name] needs” and see what you come up with.

Apparently, I am touchy feely:
“Zia needs support.”
“Zia needs to reach the heart.”
“Zia needs to reach out honestly.”

And apparently, I need to drink more:
“Zia needs 30-40 shooters.”

But then I need to drink less:
“Zia needs to be put back in the bottle.”

Okay, five minutes wasted. Back to major soapmaking marathon. I’ve gotten bad about posting soaps, but in the past week I’ve made:

– Lavandin / spruce / orange / litsea / amrys / rose FO
– Another complicated blend that I forgot to write down, and can’t remember everything that’s in there
– Lavender / orange / peppermint
– Another batch of modified castile with beeswax and honey
– Another batch of the all-new the No Stinkum Steve.

Actually, let me waste another five minutes.

The all new NSS is the final NSS. It’s awesome. It’s made with anise, lavender, tea tree, and peppermint and colored with activated charcoal so it’s BLACK. I just cut it this morning: