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:

Harry discovers Geoff’s empty beer bottle–and I find that I’m an enabler.

Steve was home sick yesterday. He’s not a very good sick person because he can’t seem to loll around and read all day. Instead, he has to be doing, doing, doing all the time. This elicits very little sympathy from me; I am the queen of lolling about and reading. But anyway.

His mother is coming for a visit week after next. And he realized that he needed to get the sink hooked up. (Apparently his mother can goad him into action; I should invite her to visit more often.) So we hoisted the darn thing off the pedestal so he could connect the faucets, cracking the pipe on one side. This was completely my fault; the thing weighs, like, 3 million pounds. There are two sinks, with two sets of faucet holes. He got one faucet attached, thinking that one is god enough for now.

YAY! Running water. We danced around the kitchen, Harry barking at our feet. Only to realize that there’s a major leak. Somewhere. We don’t know where. he dismantled the pipes trying to figure out where it was leaking. So the status update is this: We now have running water in the kitchen, only it doesn’t drain. We also have no dishwasher now.

There is some good news, however. He works in construction, and is now doing some pretty nice condos. The architect had specified these really cool, ultra groovy subway tiles from France, which are 2″ by 8″. They came in and the color was slightly off–they’re a light mushroom and apparently he says they’re too pink. No one can see any pink to speak of–and it means we’re getting them for free. Also, we’re getting new fridge, also free. Stainless steel, with the freezer on the bottom. It has a minor ding on one side.

I soak up sun. Even wearing a hat, SPF 30, and sunglasses, I still tan. So the white patches are becoming more and more obvious to me.

I suppose examining every pore doesn’t help either.

A couple of weeks ago, I bought some foundation (Zia cosmetics–who can resist?), and thought to myself, “WHY haven’t I been wearing this stuff all along??” Seriously, it was perfect. Only it was light coverage and didn’t really do much for the patches. I had read online that MAC has some good coverage foundation. So today, I hoofed it down to the mall and hit the cosmetics counter. The girl caked me up.

She was pretty caked herself–but it looked as though underneath the three inches of putty, blush, and chartreuse eyeshadow she was a pretty girl. Which leads me to the following observation: Even though I threw down 140 bucks, I’m thinking that maybe Dermablend is the way to go after all. I’m caked, and you can still see white patches if you look up close. Say hellooooooo kabuki doll.

Normally, I don’t write about really personal things. I mean sure, I talk about Steve and Harry, and post pictures of the house and all that–but I tend not to write about work, or very personal issues.. So this post is an exception, and you are forewarned that it’s personal and also very long. I’m still a little freaked out, but it’s a more controlled freak out because I know exactly what is going on, and have a clear course of action.

A couple of months ago, I was shaving my, uh, nether regions, and noticed there were some white patches of skin. I thought it was really weird, but I was super busy work-wise, and I meant to look it up, but didn’t. Then, two weeks ago, I was running out to a client meeting. While I was brushing my teeth, I couldn’t remember if I had put on deodorant, so I raised my arms to check in the mirror. “Wow,” I thought. “I put on way too much!” Rubbed the white patches and they didn’t come off.

I got in a car and called Steve in total freak out mode. He interrupted me when I started telling him about the nether region patches. “Oh you’ve had those forever. You have some under your arms too.”

“Were you planning on telling me this?” I asked. “How long have they been there?”

“I just figured it was another one of your skin weirdnesses and didn’t want to get you all paranoid.” Much as it pains me to admit, he’s right on both accounts: 1) I have weird skin stuff; and 2) I am a complete hypochondriac. So when I got home, I made an appointment with the dermatologist. For the record, on the question of how long they’ve been there, he wavers between “since we’ve been together” and six months. Typical guy.

But then I noticed a patch on my face.

It wasn’t white–but it was definitely paler. Is it my imagination? Is it really there? Is it exactly like the other patches, or could it be something else? What about that red circle around it? And those bumps? So I started in on the Internet research.

I’m good at research. I love research. And I’m also on the computer all day long. At home. Alone. Where I have ample opportunity to imagine the worst. Before long, I was convinced I had both vitiligo and lichen scleroma, but was hoping that it was systemic tinea versicolor–not that the systemic part exists, but one can still hope, right? And my doctor’s appointment was still two weeks off. Then, I met Steve up in Victoria and we spent the day walking around in the sun. The next day, in a client meeting, I excused myself to go to the bathroom and while washing my hands started fixating on the light patch on my cheek.

And then I noticed that the areas above my eyebrows were sunburned.

“Of course, they’re redder,” scoffed Steve in an attempt to comfort me. “They stick out more.” The countdown to my doctor’s appointment began in earnest.

Still hoping that it was tinea versicolor, I started applying an antifungal lotion on my face. They just kept appearing. I hoped against hope that it was the versicolor thing, but I knew different. It was vitiligo.

I was bordering on hysterical. In the course of the next week, I went through all the stages of grieving–including acceptance once I realized that pretty much anything can be covered by makeup. And there’s specific makeup for this. The fact is, I spend less time on makeup than any other American woman alive, so who cares if I need 10 extra minutes every morning.

Meanwhile, I missed my hair appointment and my grays kept on growing in grayer. (I’ve been going gray since I was 25; my grandmother was completely gray when she was 35.) I was examining my head in the mirror, and noticed a patch of white. And then it seemed to me that my hair was thinning. Like seriously thinning. Alopecia (I had a bout of alopecia areata my early 20s) and vitiligo can go hand in hand. Never mind that Steve insists it’s been like that forever. Now there’s more Internet research. And there’s more hysteria.

So in other words, the last two and a half weeks have been absolutely terrible. I haven’t been able to concentrate on anything. I had my appointment this morning. “I didn’t shave my armpits,” I explained, “so you could see that some of the hair is growing in white.” I didn’t even have my shirt off when her ears perked up at the mention of white and she said the dreaded word: “Vitiligo.”

I knew it.

But all is not lost. It’s all over my face–but it’s also early in the game (which means it’s just paler–you can only really see it up close). There are treatments. So we’re starting with Protopic, and she seems to think that repigmentation is more than likely. There are other, more aggressive treatments if the Protopic doesn’t work. And there’s always makeup. After the past couple of weeks, just knowing for sure makes a huge difference.

And there’s nothing wrong with my hair, except for the fact that I’m 33, not 23.

You wouldn’t know it today–which is damp and drizzly–but yesterday was HOT. Steve and I took the dog around Seward Park, and then the two of us collected bathing suits and hit the open waters of Lake Washington. We left Harry at home. When we got back, this is what we found:

We puttered around the house, doing laundry, dishes, nagging Steve about hooking up the water to the sink. Finally, Harry finally moved …

…outside.

Well, Bifrost 3 came in second place. Pretty impressive. They sailed through last Saturday night–until about 3:30 in the morning. Steve wandered around the Victoria harbor like a homeless person–finally crashing in the grass–until my ferry came in. Which, of course, was late. Apparently, the race was fraught with excitement; high winds tilted the boat until the crew was dangling in the water, and they ripped the mainsail. You can tell that I know nothing about sailing with my descriptions–but here at Chez Smunshi, we’re pretty thrilled.