Rainy and Sunny Days of My Life.

We had an absolutely gorgeous sunny day on Saturday, and now for the entire week until next Saturday, the forecast is rain. Typical Seattle.

Personally, I don't mind rain. Neither does Daniel. We kind of like looking at it outside our bay window - it gives trees many different shades of green, more so than a washed-out sunny day.

The only drawback is that rain hurts. On a day like this, I'm reminded how much fibromyalgia can hurt. I'm not sure if it's due to the low air pressure or the wetness or the temperature (or combination of all three), but a cold rainy day tends to hurt like hell. I feel like I went to some masochistic boot camp and did a day-long circuit training in the mud yesterday, subsequently beaten with a stick at a Zen temple, after being a couch potato for 20 years. My whole body is sore from head to toe, resulting in walking gingerly to protect the bottom of my feet.

There is a silver lining to all this, however. My noticing this pain means that I don't hurt like this all the time. I used to wake up feeling like this almost everyday, and that's not the case anymore. My pain is more localized and manageable much of the time without heavy drugs. Now that's progress.

Like the many shades of green we can see in the rain, today I can see many shades of pain. On some sunny (or adrenaline-laced) days, the shades of pain are washed out and less visible. But it weren't for the rainy days, we wouldn't know how great sunny days are, would we?

So I'm thankful, on this rainy day, for the sunny and rainy days of my life.

-A

二日前の土曜日は快晴、素晴らしく青い空でしたが、

今週は土曜日までずっと雨の予報です。さすがシアトル。

個人的には、雨は嫌いではありません。ダニエルも然り。

出窓の側に座り、外の雨を眺めるのが好きです。

色が全て一段明るくなり褪せてしまう晴れの日よりも、

雨の日は微妙に異なる、木々の様々な緑色が見えます。

雨の困るところは、体が痛くなること。

こんな日は、線維筋痛症がどれだけ痛いか思い知らされます。

低気圧のせいなのか、湿気のせいなのか、低い気温のせいなのか、

それともそれらが全部相まってのことなのか分かりませんが、

寒い雨の日はとんでもなく痛いです。どんな感じかというと、

20年くらい運動不足でいた後に、足をとられる泥の中で

ビリーズブートキャンプ（←古い）に参加し、

筋肉痛になった後、禅寺に行ってバシバシ叩かれた・・・

という非常にマゾなイメージです（笑）。

文字通り頭から爪先まで痛いので、

こんな日は足の裏もかばって、

カーペットの上もそろそろ〜っと歩きます。

でもこんな状況にも、希望の光はあります！

というのは、今日はすごく痛い日、と特定できるということは、

他の日はこれほど痛くないということだからです。

以前は、毎日のように起きるとこんな感じでした。

でも今は、強い薬を飲むこともなく、

痛みももっと部分的でなんとかなる。

これは大変な進歩です。

雨が降っていると色々な明るさの緑が見えるように、

今日はいろいろな種類の痛さを感じます。

晴れている日やアドレナリン・ドーパミンが

たくさん出ている日には、痛みはは色褪せて見えない。

でも雨の日がなかったら、晴れの日もありがたく感じませんよね。

すごく前より良くなっていることに気付かなかったかも。

だから今日こんな雨の日は、晴れの日、そして雨の日も、

ありがたいんだなあ、と思うのです。

-英

The second biggest headline: "Thank You."

What made me cry today:

I was watching the Japanese news (again. I know. I should stop), and watched this 12-year old in Iwate prefecture memorialize what happened to her on 3/11. She was making a home-made, hand-written 'newspaper' to process and preserve what she's gone through. The biggest headline was naturally "Tsunami Came," as the tsunami swallowed and wiped away her home. But the second headline was "Thank You." She lives in the elementary school she goes to, which became one of the local evacuation shelters - and she wanted to thank those who brought her family food, and also thank the people from the local community, who were helping at the shelter.

She wrote:

"I'd never thought such a big earthquake, or a tsunami, was possible. It was scary. We lost everything. But everyone in my family is alive, so I'm glad about that."

"Because of the nice people from the Self Defense Forces, my family is able to eat 3 times a day. Although we lost our home, there are people from the local community who are helping us at the shelter, and with their help, we'll be able to try hard [to rebuild our life again]. So I want to say to all of them, 'Thank you.'"

She graduated from her elementary school yesterday, in the gymnasium where they sleep, surrounded by the boxes of essential supplies like bath tissues. She couldn't wear the nice clothes her family prepared, but she was happy she could graduate in a graduation ceremony.

Waaaah. (T-T) ← tears running down my cheeks

In another segment, this 18-year old was trying to clean up the rubble. No one was paying him to do it. Every house and building in his town looked like piles of matchsticks. He apparently had secured a job in Tokyo after he graduates from his high school. He said, "I thought I'd move to the city and make some good money, but I think my hometown is more important now. I want to be here and help rebuild it."

Waaaah. (T-T)

We are so spoiled sometimes (OK, lots of times). As we get older, we start to believe we are entitled to various luxuries, and stop appreciating what we have. I think we could learn a thing or two from these kids, who lost just about everything. (Now that I'm old, I think of 18-year olds as kids - scary!)

-A

Life continues in Fukushima - 福島の生活は続く。

Oguninuma Wetland in Fukushima.
雄国沼湿原

We were supposed to depart to Japan today (3/22).

Obviously that didn't happen for a number of reasons, not the least of which is the fact we can't exactly reach Fukushima to see my family. The bullet train service remains closed, the freeway is open to emergency vehicles only, and even if we were to brave the side roads, we wouldn't be able to buy gas. (Blast!) Oh, did I mention my family's home falls in the 50 miles evacuation area imposed by the U.S. Gov't?

I was lucky. My family's home remained intact (sans the stone fence that became a pile of rubble - see below), and everyone is alive and well. They even have running water now, after being out of it for a week.

Still, the situation at the Fukushima Daiichi nuclear power plant remains tense, and there is no end in sight for this plant fiasco. My brother's school became one of the evacuation sites for those who live close to the plant, so he is working there every day in lieu of his normal teaching job.

People in Fukushima seem to be remaining fairly calm, considering what they are going through. I hear there's mild panic in places like Tokyo, but since people in Fukushima don't have many choices, they are staying put, trying to continue or establish their everyday life (even at shelters). When they had to line up for water for 4 hours, my mom said everyone was smiling, chatting, and in general seemed content about it. She attributed it to Fukushimans' (←made-up word) laid-back disposition.

It's not exactly an urban area where my folks live, so usually there is a lot of driving. Since there is no gas available for purchase, they've been walking a lot (including going to get water when water was scarce). They are making the best of it, saying, "It's giving us a good exercise!" (Though they did need it.)

People have asked me, "Don't they want to get out?" "How about coming to Tokyo?" "Do they want to stay in Seattle for a while?" These are all reasonable questions to ask.

The answer is, no, they don't want to get out of Fukushima. Aside from the fact they can't physically get out on their own (no train, no road, no gas), even if they had the resources, they'd choose to stay there unless evacuation is absolutely necessary.

Fukushima is their home. My father and brother are looking forward to teaching when the schools finally open (maybe in May instead of April?); the kids would go back to school; my mom will be an official Fukushima flower guide volunteer (she trained months for it!) - and their life continues in Fukushima.

Life is in fact going right now - my sister-in-law realized the kids have had a week-long vacation inadvertently, so she's making them study at home. Come to think of it, since my family consists of teachers (my father, mother, brother, and sister-in-law), they could probably try to teach the curriculum if they so chose.

When I was talking to my mom about the lack of fuel, more than going to the store or getting around, what she cared about the most was: "I feel bad we couldn't pay a visit to the [family] grave." Amidst all this craziness, I had forgotten about Ohigan. My mother obviously didn't.

(For those of you outside Japan, the time surrounding the spring and fall equinox is called "Ohigan," which is a time to go to the family grave and honor your ancestors. In Japan, unless the grave is abandoned (because the family died off or something), the temple/cemetery doesn't keep up the headstone and its base structure that holds the clan's urns. The family does. Ohigan is one of the many times to do so. You go back home for it even if you live elsewhere.)

This really touched me. For my mom and many before her, Fukushima is *the* home, where they have Ohigan. They couldn't imagine leaving it. So I felt very silly to even bring up getting away from it.

People looking in from the outside may think, "Why would you want to stay there?" or "Why would you want to rebuild where it's dangerous/possibly radioactive?" I suspect most, if not all, of the people who evacuated from the area surrounding the power plant would want to go home if they could, and continue their lives. Because that is their home.

-A

Good thing they didn't have the car or one of the kids next to the fence!

車を塀の隣に停めてたり、子供が横にいなくて良かった〜。

実は今日（22日）、日本に一時帰国する予定でした。

当然ながら一番の目的は家族に会う事だったので、

新幹線、東北自動車道などなど使えない状態の今、

実家の福島に帰れない以上行く意味がありません。

普通の道をなんとか繋げて行くにしてもガソリンが

買えないのですからしょうがありません。

（八方塞がりとはこのことですね！笑）

家族が全員助かり、家も塀が崩れたのを除けば

ほとんどダメージがなかったので、

その点はとてもラッキーでした。

水も数日前に出るようになりましたし。

とは言え、福島第一原発では安心できない状況が

続き、完全な収束には時間がかかるでしょう。

兄の勤める高校は原発周辺の住民の方々の避難所となり、

普段の仕事の代わりにお手伝いをしているそうです。

母は福島の人はのんびりしているからだと言いますが、

この状況下でも、みんな意外に落ち着いているそうです。

東京などでは（特に、海外メディアから情報を得ている

人達は）「どうしよう逃げるべき？」と思案したり、

もう既に関西や海外に行ってしまった人達も

いるようですが、何しろ選択肢があまりない福島の人達は、

いるところが避難所であれ自分の家であれ、

今できるだけの「日常的」な生活をしようとしています。

先日、給水所で水をもらうのが4時間待ちだったときも、

みんなニコニコおしゃべりしながら待っていたそうです。

家族の住んでいるところはあまり人口密度が高くないので、

普段は車での移動が多くなります。

燃料が手に入らなかったので、水をもらいに行ったのも

もちろん徒歩ですが、「運動になって良かった！」とか

言っていました（運動はいいんだけど、待つのが寒そう）。

地震があって、原発がこんなことになってから、

いろいろな人に聞かれました。

「ご家族は疎開とか考えたのかな？」

「東京の親戚のところに身をよせるとか？」

「シアトルに来るっていうのはどう？」

どれも、もっともな質問です。

答えはどれも、「まさか〜」でした。

出たいと思っても出る手段がない、ということは

別にして、本当に危険で必要がない限り、

福島を出る事は考えていない、とのことです。

それは福島が家族の家で生活のベースだから。

父と兄は（5月になるのかいつになるやら）

学校が始まったら教鞭をとるし、

子供達は学校に行くし、母はふくしま花案内人の

ボランティアがあるし、そして今ももちろん、

福島での生活は危機で止まっているのではなく、

続いているのです。

義理の姉は、ふっと気付いたら

一週間子供達が遊んで過ごしてしまったので、

勉強をさせ始めたそうです。←えらい。

（家族は全員教師なので、もしかしたら殆どの科目は

家でも学校のカリキュラムを教えられるかも！？）

昨夜、母とガソリンがないことを話していて、

彼女が不便を訴えたのは買い物のことでも

出かけることでもなく、

「ただ、お墓参りに行けなかったのが

悪かったんだけど」ということでした。

海外にいて忘れていましたが、

お彼岸だったのですね。

これには心を打たれました。

母や、福島にずっと暮らしてきた人達にとって、

福島はほんとうの「家」でありルーツなのです。

逃げ出す事なんて考えられないのも無理はありません。

それを、「シアトルに来られたら来たい？」などと

言った自分はとんでもなく浅はかでした。

外から見たら、「なんで危ない（かも知れない）のに

留まるの？」とか、「放射能が危険かも知れないのに、

またそこに帰るの？」とか思われるかもしれません。

でも、原発のまわりに住んでいて避難した人達も、

帰れるものならそこに帰って、また生活したいと

願っていると思います。

そこは彼等の家だから。

-英

地震のなかで、詠むうた。

東日本大震災、被災地の福島で母が詠んだ歌です。

「うた按ずる幸せ知れり子を孫を探す大地震（おおない）余震の中に」

What to learn from sweater pills - セーターの毛玉から学ぶこと。

I gave Daniel a sweater for Christmas. He likes it so much, he wears it way too often - as a result, it's ended up with lots of pills after just a month of wear. (-_-) Pills were everywhere!

So there I was the other night, trying to remove pills with one of those de-fuzzing combs, as well as a shaver. After about 10 minutes of effort, it looked much better. But as it got better, less noticeable ones stood out more: "Oh, there's some over here too!" "Oh wait, I missed this whole section." It seemed there wasn't an end to this.

These little ones didn't stick out when there were big pills everywhere - then they became suddenly bothersome when it became close to being perfect, with the big ones gone. I figured, life is a lot like this.

A few years ago, on many days I could barely walk. Just about a year ago, I was tormented by the sore throat (complete with white spots!) that lasted for almost two years. It seemed I couldn't function without the weekly immune support IVs.

Now, things are much better. I still can't talk very much or I suffer, but I don't wake up with a sore throat every day. Most of the time I can drive myself to appointments. I'm not afraid to walk around our neighborhood - I no longer fear pain would stop me in my tracks.

So compared to before, I'm like the sweater with much smaller pills. I still notice the painful fingers when I type or knit (or just browse); I still tire easily; my eyes hurt when I look at the computer screen. But you know what? Those things only happen because I'm able to be up and about doing things. Before, the bigger problem was that I could never get up and use the computer (though I still used my laptop sideways in bed).

Nowadays my chair gets much more use because I have enough energy to be upright. Complaining that my body hurts from sitting in it is not unlike chasing after the smaller pills on the sweater. The closer something is to being perfect, the more smaller flaws we notice.

Every time I'm tempted to complain, I will remember: Life is actually pretty good right now, just like that sweater.

-A

P.S. The crowning achievement(?) of the past year: Now I can carry my own purse much of the time! Though I do appreciate that I have a nice husband who is willing to carry it when I start hurting.

A New Year and Back on the Earth - 地球に帰ってくる新年！

(For those of you who are curious:

this letter means "road" or "path.")

Happy New Year!

In Japan, a lot of people whip out their brush, paper, and ink, then do calligraphy on January 2nd, writing letters, poems, new years resolutions or haikus as their first and pristine effort of the year. They call it Kakizome (first writing). This is my Kakizome, in the form of a blog post!

*************************************************************************************

I recently read an interview of Laura Hillenbrand, who is the author of the novel Seabiscuit: An American Legend. It turns out, she was struck by chronic fatigue syndrome (CFS) too when she was 19 and in college. The time was 1987. She was exhausted, felt ill, and could barely get up because of severe vertigo. That state has continued till this day with ups and downs.

CFS is still little understood (researches have attributed it to various chronic infections in the past, but none of that has been proven to be the direct cause), but it was even less understood back then.

It took several years for doctors to diagnose her--she was first diagnosed with strep throat, stress, laziness, anorexia, depression, or even an "attitude problem." Jay Leno was calling it "the yuppie flu" on TV and making fun of it. It must have been devastating when she could barely move from the overwhelming fatigue, and all she wanted was to get up and be well again.

She says that her friends and family just expected that she would get better and go back to college--go back to where she was, and resume her old life. When that didn't happen, her friends, probably busy with their own lives, seemed to forget about her, and her family "offered a collective shrug." The only person who offered real support and kept her afloat was her college boyfriend, who later became her husband.

She describes the feeling of isolation: “It’s like you go to another place, like you’re not on this planet anymore,” “You reach a level of despair and suffering where you just don’t feel like the rest of the world.” She also says of the way she saw herself: "For a long time I felt stuck at 19 forever, stuck in the way people saw me."

I know those feelings all too well, and it made me cry.

*************************************************************************************

When I started this blog back in 2007, I almost had those same expectations as her family and friends. I was newly diagnosed with fibromyalgia syndrome (FMS), CFS, and celiac disease, and I thought to myself: "I'll beat these things, emerge victorious, and resume my life."

I think "resume" is the key word here that should never have been used. I never accepted that the life I have been living since then was the very life I got and ought to be living. I looked at my illness as a temporary state--a pause of sorts in my life. I looked at it as a setback that held me back from my true state, to which I would go back.

2010 was a tipping point, in that I became truly frustrated that this "temporary state" had lasted for so long. When it's been over 3 years, it seemed no longer reasonable to call it a pause. I presumed my family and friends probably expected me to get better in a couple of years, and since I couldn't do so, I felt like I was letting them down. My other presumption was that I was only an acceptable person in my old state: healthy, with a career and/or school to go to, zipping around from place to place with purpose.

Like Ms. Hillenbrand, I felt like I dropped from the face of the earth, like I wasn't part of the rest of the world anymore. My expectation of "what should be me" was stuck in 2006 before I first got sick; I used to think I'd go back to that version of me, and somehow make up for the time I lost in between. Except that wasn't really possible. And in a state of depression, I assumed that was everyone else's expectation, too.

Of course, many of these presumptions were mine. My family and friends have been far more supportive than the experience Ms. Hillenbrand describes, and luckily, I was diagnosed with various conditions far more quickly than she was. Yet, the feelings that accompany chronic illnesses transcend time, culture and place. One of the most prominent is the tremendous feeling of guilt that you are not getting all better to go back to being the person that you were before you got sick.

*************************************************************************************

So my new year resolution is this: Less guilt! And to celebrate the life that I have. I'll try to throw out the presumptions and self-imposed timelines, and cherish what I do have: A comfortable life with a husband who loves me in a town we both love, loving family and friends, and three loving cats who've been with us through thick and thin. I also have my mind that lets me write. I couldn't ask for much more than that.

Life is not perfect. Even when I hurt physically or feel exhausted, I will embrace that as my present state and work with the hand I've been dealt with. I will be Me: Version 2011, and no longer look back to the old Me: V. 2006.

-A

明けましておめでとうございます。m(__)m

舌足らずなブログに寄っていただきありがとうございます。

今年もまたよろしくお願いします！

日本では正月２日に書き初めをしますが（日本にいてもしないけど）、

久々のブログ更新というかたちで書き初めにかえたいと思います。

（また長くてすみません！）

*************************************************************************************

この間、トビー・マグワイアが主演した映画「シービスケット」の

原作本の作者であるローラ・ヒレンブランド氏のインタビューを読みました。

彼女も、大学に行っている19歳のときに慢性疲労症候群（CFS）を発病し、

とてつもない倦怠感にみまわれ、いつもめまいがしたため起き上がることも

なかなかできなかったそうです。1987年に発病して以来少し良くなったり

悪くなったりを繰り返しましたが、今もなかなか家から出られないという話でした。

CFSは今でもあまり理解されていない病気です。最近になっていろいろな

慢性感染との関連性が研究されていますが、直接の原因は究明されていませんし、

確立された治療法もありません。1980年代には殆ど理解されていなかったと

いっていいでしょう。

彼女がきちんと診断されるまで、5〜6年はかかったそうです。

連鎖球菌性咽頭炎ではないかとか、単に怠け者なのではとか、拒食症、鬱、

または、単に人生に対する態度の問題だとか、彼女はいろいろな診断、偏見を

うけました。その頃、テレビ番組の中でコメディアンのジェイ・レノは、

CFSのことを「金持ちのインフルエンザ」と呼び笑っていました。

（余裕があるからかかっていられる、という意味のジョーク。

慢性の病気を患って、余裕がある人なんて滅多にいませんが。）

自分ではどうしようもない倦怠感から起き上がれず、健康になって

歩き回りたかった彼女にとって、それがどんなにつらかったことでしょうか。

大学の友人や家族は、彼女は多分すぐに良くなって大学に復学し、すべてが

もとに戻るものだと思っていました。それが起こらなかったとき、みんな

それぞれの生活で忙しかったのでしょうが、友人にはだんだんと忘れられ、

家族には「まあ、どうしようもないからしょうがないね」、という感じで

放っておかれたそうです。唯一そばについていてサポートしてくれたのは

大学時代のボーイフレンド、後に夫となるフラナガン氏でした。

彼女はずっと長年感じた孤立感をこのように表現していました。「私がもう

この惑星にはいないかのように、どこかに行ってしまったかのように思われる

のよね。」「絶望感と苦しみの中で、まわりの世の中の一部ではなくなって

しまったように思える。」　そして自分をどのように見ていたかについて、

「ずっと、自分のなかの時間が19歳の自分で止まってしまっていたの。

それが、まわりの人間がみとめた自分だった」

その気持ちが痛いほど分かって、読んでいて涙が出ました。

*************************************************************************************

2007年にこのブログを始めたとき、私も自分に対して、彼女の友人や家族が

持ったような期待をもっていました。線維筋痛症（FMS）、慢性疲労症候群（CFS）、

セリアック病と診断を受け、こう考えていたのです。「病気かあ。そんなのには

（すぐ）打ち勝って、また元の生活を回復するから平気！」

この「回復」であるとか、「取り戻す」とかいう言葉がくせ者だったのですね。

（だいたい人生、ずっと同じ状態であることなんかないんだし。）考えてみると、

毎日過ごしていて、それが今の自分の生活であるということを、自分のなかで

受け入れていませんでした。頭のどこかで、一時的な状態であると思っていた。

すごろくで言ったら、一回休み、の休止状態だと。今の生活が、自分に課した

「あるべき自分」に到達／回帰する前の、障害物であるかのように考えていました、

ここ何年かずっと。

2010年はつらい年でした。この「一時的な状態」が長く続いて、3年もすると、

休止状態とは言っていられなくなったからです（苦笑）。家族や友人は多分、

1〜2年で良くなるものだと思ってただろうな、と考え、とすると、それが

できなかった自分がもどかしくて悪く思える。そして自分の頭の中でまた勝手に

とらわれたのは、年齢的にも（だいたいは）健康で、仕事をしたり勉強したり

（人によっては育児をしたり）して、かけずりまわっていなければ駄目、

という強迫観念。（考えてみれば、他人にはあまり関係ないので、じゃあ

しなかったから何？ってことになるんですけどね。）

ヒレンブランド氏と同じく、地球上から落っこちてしまったような、世の中の

一部ではなくなってしまったかのような気持ちになっていました。

「あるべき自分」の姿は、病気になる前に見た2006年の自分のまま。そこに戻って、

そして遅れてしまった分を取り戻して・・・と考えていたのが、もうそれが

できないところまで来てしまった。そして鬱々としていた中で、まわりの人間も、

私が2006年当時の元気な状態に戻るものと思っている、と勝手に考えていました。

もちろん、こうした推定の多くは自分の頭で勝手に生み出したものです。

私の家族や友人は、ヒレンブランド氏の話よりもはるかに思いやりをもって

支え励ましてくれますし、幸運なことに、診断された環境ももっと速やかでした。

とは言え、慢性的な病気にともなう感情には時代、文化、場所を問わず

共通するものがあります。中でもひときわ強く感じるのは、猛烈な罪悪感。

良くならず、病気になる前の自分に戻れない、という自責の念です。

*************************************************************************************

そこで新年の目標としてかかげるのは、できるだけ自分を責めない！ということ。

そして、今自分が持っているもの、ある生活に感謝して大切にするということ。

勝手にまわりが何を考えているか推定するのはやめて、いついつまでに治る、

とかいう時間や状態を設定・予測することもやめて、いまの生活を大事にします。

考えてみると、文句は言えないくらい色々たくさん持っているのです。

大事にしてくれるだんな様との、好きな街での快適な生活、愛情深い家族と友人、

辛いときも幸せなときもいつも一緒にいてくれた猫たち。

何もかもパーフェクトな人生なんてありません。たとえ体が痛くても、

疲れて動けなくても、そのときどきの状態を受け入れて、これが今の自分だから

大切にしていこうと思います。2006年バージョンの自分をふりかえることはやめて、

2011年バージョン、今の自分で今年はやっていきます。

英

Happy Thanksgiving 2010!

Happy Thanksgiving! I hope everyone had a lovely turkey day yesterday. We had a wonderful feast at our friends David & Eve's, and I was ever so thankful Eve made the turkey and amazing stuffing gluten-, dairy-, and egg-free.

We brought some stewed Kabocha squash and cranberry pear crisp; after freaking out that the "crisp" didn't turn out so crisp (I followed the recipe's instructions but it didn't turn out!), I also baked the back-up brownies (literally Plan "B").

After 4 years of living with fibromyalgia/chronic fatigue syndrome, there are some things you learn: If you put in too much effort/energy into something beforehand, you cannot enjoy the party!

So I was trying to preserve as much energy as possible. I cooked the squash the day before, and asked for help as much as I can from Daniel. I skipped blowdrying my hair and putting on any makeup, took extra cortisol, and gave myself a Vitamin B injection. Even then, after the Plan B mishap (lol), I was slightly in over my head.

Back in the day, I used to go all out for the big T-day. I'd brine the turkey overnight in the special concoction overnight, prepare some exotic stuffing, cook buttermilk & bacon mashed potatoes and other usual suspects, bake the special cranberry bread, and prepare a couple of pies plus maybe a pumpkin chocolate cheesecake. (OK, writing this, now I realize that may have been a bit much.)

I wanted everyone to be happy. And I reveled in seeing people enjoy the feast.

As I don't have the energy or wherewithal (it usually really hurts after I do some cooking) right now, the hardest thing is to restrain myself and not give into the desire to contribute more to the feast/party. Because that would result in not being able to enjoy the company.

This is really hard for me. On top of bringing what I can eat, I almost want to bring really decadent stuff that I can't eat but others can. Which at this point is impossible.

I guess the lesson here is that unless you are healthy and happy yourself, it's really damn difficult to make others happy. I'm not as afraid to ask for help from others anymore, so that certainly helps for regular occasions, but I do hope I get better enough to host a Thanksgiving dinner one day in the future. For now, I'll try to give myself a permission to be a perpetual, but grateful, guest.

-A

P.S. It's been said that many fibromyalgia patients are former type-A overachievers - maybe a part of it comes from wearing down your adrenal functions too much too quickly. Maybe I was a Thanksgiving overachiever - maybe it is good to relax and enjoy simpler things. :P

In pursuit of elusive sleep -- vol. 1

One good thing about having been sick for 3 years is that I've come to appreciate the most basic human functions. Like, breathing and sleeping. :D

Last night I didn’t get a good night’s sleep, hence, my body aches all over down to my fingers. What I didn’t know until recently was that I must not have gotten much deep sleep in my life.

Believe it or not, Sarah Palin was the catalyst in my quest for sleep (honest).

I'll explain. One day in 2008, shortly before the big election, I was getting an anti-viral IV infusion at the Fibromyalgia and Fatigue Center. There was another woman sitting next to me, also getting an IV. She was chatty and was talking about various things. As the conversation turned to the election, she started saying how she thought Sarah Palin was a great choice for Vice President.

…Let’s just say we had some different opinions about Ms. Palin. (I tend to think “She seems like a nice lady” is not a good enough qualification for Vice President, considering where “He seems like someone I can have a beer with” got us.) So our loose, fibromyalgia-based friendship had a rocky start. But we kept talking, and as the conversation turned to the subject of sleep, she said something quite interesting.

Ms. S: My tongue is too big for my mouth.
Me: Come again?
Ms. S: My mouth is too crowded, because I have a small jaw. I was diagnosed with a light case of sleep apnea about a year ago, but wearing a CPAP (Continuous Positive Airway Pressure) machine didn’t help. So I’m working with this famous dentist in Tacoma (WA).

Dentist? For fibromyalgia? It was an interesting story. She went to see this renowned dentist for an evaluation (which I believe cost several hundred dollars by itself), and was told that what's in her mouth—teeth, tongue and other fleshy parts—were too big for her small mouth, and that was the reason for her apnea, which developed to fibromyalgia.

The doctor’s solution involved wearing his patented custom-made device (in your mouth) at all times, day and night at first, then eventually just when you sleep, in order to “re-orient everything in your mouth.” This supposedly allowed you to breathe and sleep better, resulting in increased oxygen intake. His theory was that increased oxygen intake, coupled with better sleep, cures fibromyalgia and chronic fatigue.

I thought, huh, how interesting. I thought I'd heard most of the wacky theories and treatments (one even involved a neck surgery), but I hadn't heard that one. The most interesting part to me was that she was thin and fit by American standards. My previous conception of sleep apnea involved slightly overweight people, whose flesh kind of got in the way in the back of their throats. An avid equestrian, Ms. S was clearly in shape.

“How do you know your tongue is too big?” I asked. Ms. S said, “First, your tongue is always touching the roof of your mouth. Second, when you look at the front tip of your tongue, it always looks kind of scalloped because it’s pressed hard against your teeth.”

Hmmm. I’d been called a tongue thruster (someone who pushes her teeth forward with tongue; so much so it screws up the teeth placement) by dentists. I’d also been told by acupuncturists and doctors of Chinese medicine that I had a scalloped tongue almost every time I saw them. I thought it meant I was bloated or something. And my tongue is always taking up much of my mouth space, touching the roof of my mouth at all times (when I have my mouth closed). So I started wondering, “Does this apply to me?”

But her story sounded crazy—she was going to place her faith in this doctor, because nothing else worked, and pay him $20,000 (or something like that) for this treatment. “Oh, but it’s actually a good deal, because it includes all the testing and follow-up appointments, as well as adjustments he makes for this device.”

At that point, my faint interest diminished—what kind of decent doctor asks for $20,000 upfront? I also didn’t know what’s supposed to be the “normal” mouth orientation.

“How did you find out about your apnea?” I asked. She told me she had what’s called a sleep study done at Virginia Mason Hospital's Sleep Disorder Center. That sounded like something covered by our insurance, so I took a mental note. Maybe I could first figure out if I have a similar problem.

There, my quest for sleep began—because we disagreed about Sarah Palin.

-A

(To be continued…)

[I’ll write in Japanese once I get my new laptop!]

Babies! in different places - （世界中いろんな所の）赤ちゃん！

No, I'm not pregnant. But it seems like this past year our life has been very baby-oriented, in that our family members and close friends have had new babies left and right. (Congratulations, Annette & Derrick, on your newest arrival!)

The new movie "Babies" follows four babies in different places:

Opuwo, Namibia; Tokyo, Japan; Bayanchandmani, Mongolia; and San Francisco, U.S.A.

What I'm realizing is that the moms (and dads) in different places have touchingly similar emotions and experiences--and at the same time, vastly different experiences depending on where they live.

For example, I learned recently that my friends in Japan almost must be working (for someone else) in order to enroll their child in a licensed daycare/preschool. I vaguely knew this from watching a made-for-TV drama "Daisuki!" (I love [you] to death!), which chronicled the struggles (and triumphs) of a young, developmentally disabled, recently widowed single mom. (Yeah, talk about having odds stacked against you.) In it, childrearing gets to be hard (and sometimes dangerous) for her and her family since everyone else has to go to work and the mother has limited abilities to mentally organize necessary tasks or to respond to emergencies. So they set out to find some childcare help/preschool, but most preschools turn her away because she is not a "working mom" (and also because they find the child somewhat disruptive, at first)--eventually she finds one preschool, but there other moms talk (so mean!) behind her back because "It's not like she has a job."

Our heroine eventually develops enough skills in the drama to work part-time at a bakery (where she almost loses the job, of course), but I'm sure for many that may not be possible.

Here in the U.S., I'm sure some preschools have wait lists and other obstacles, but it's not like you need to present a reason why you need childcare/preschool. I know of friends who start their child in daycare/preschool because they felt group socialization was a good idea; others get childcare while they attend school. Other times, there are drop-off daycare centers, where your child can show up part-time as long as you pay. Sure it's costly and it may not be accessible to everyone, but you are not asked to have one kind of life or another.

Apparently you are in Japan, because my friend just got turned down for licensed daycare centers when she put down "self-employed" for her employment status. She was able to, however, get a spot at an unlicensed preschool. I guess the reasoning is that these daycare centers receive government funding, but if someone wants to further their education or be self-employed, shouldn't those be a good enough reason?

I guess we tend to have more choices in this country. And it's always hard to state which system is better--the Japanese system may drive moms bonkers, but it is true that Japanese kids are significantly better behaved and tend to grow up much less violent (in general anyway). But are those Japanese kids happier? I'm not sure. Are American kids happier as their parents has more choices? I'm not sure of that either.

The new movie, Babies, follows four babies from four very different places: Opuwo, Namibia; Tokyo, Japan; Bayanchandmani, Mongolia; and San Francisco, U.S.A. I saw the preview in a theater, and back then vaguely wanted to watch it because the babies were cute. Now, I really want to watch it, because I also want to see the different experiences of the parents in different places (and common, shared experiences too). I'm imagining that people in Namibia and Mongolia have even less childcare options, but I could be mistaken--I really don't know much about Namibia or Mongolia.

So, when I was contacted recently by BzzAgent about watching & sharing some exclusive content from the movie, I jumped at the idea. (BzzAgents typically get to try new products and services and share their experience with their friends and families; I'm a BzzAgent.) What timing! Just the movie I wanted to see.

Some things are always true: Babies are a blessing and joy. They are positively adorable. Other things also tend to be true. I know of very few friends (okay, maybe one) who didn't go mildly crazy/get depressed during their first year as a mom. I think childrearing is a hard, hard job--I think it's the toughest job out there.

It's hard to tell due to the recent recession, but if we are really the richest country in the world (though I always feel like Germany or Sweden must be, seeing how their governments are run and their countries not in gazillion dollars of debt), I think we should be paying moms (or dads) who are taking care of the kids. I think they actually do that in Sweden. But despite the researches that consistently show people in places like Sweden and Norway are the happiest bunch, Americans (esp. those who watch F-- News) tend to think those countries are communists/socialists and/or take too much of your hard earned money, so that'll never happen. I tend to think I'd love to pay more taxes if we had excellent social services (including educational system) as well as an insurance system that actually works, and got paid to take care of your kids. If your country was not horrendously in debt, that would also be a huge bonus. But that's just me.

I guess we just have to pay ourselves for now...

-A

Ponijao (below), who lives in Namibia with her family, is one of four babies
followed from birth to first steps in Thomas Balmès' new film, BABIES.

Photo credit: Focus Features

Theatrical Trailer:

(The last scene is my favorite--beyond awesome.)

(Japanese portion to come later... My computer is broken so it might take a while :P)

P.S. I just found out, though not to the extent of Sweden, in Japan parents are starting to receive government stipend for each child. (Don't quote me, I haven't researched this to verify the amount) I am told you get something like $125 or $150 per child. It doesn't seem like much, but I guess it could add up if you have multiple children. Of course, they are doing this because people are not reproducing enough, and coupled with the population that is living longer than ever, not having enough tax-paying citizens in the near future would be problematic.

Things are looking up! - 今年は上向きな予感。

Image by andrewdfrank.
Click to enlarge -- it's a great picture.

I've had another appointment with my endocrinologist -- and guess what? My free Triiodothyronine (T3 thyroid hormone) and TSH (thyroid stimulating hormone) levels came back NORMAL. I don't remember how long it's been since I got my last "normal" thyroid test results. One (or three or four) less pill to take? I'd take that! (Now that I know a bit more, it seems my hormone imbalances mostly stem from pituitary gland -- as TSH is produced by pituitary gland's order.)

I don't know if my thyroid glands were rudely woken up by 7 weeks of not taking thyroid medications (shock therapy??), or if additional hydrocortisone is helping, but this gives me hope -- in that maybe my body doesn't have to be screwed up forever in every gland we look at.

The nagging questions remain, though -- then why do I keep hosting opportunistic, chronic infections? (I've had a sore throat since September of last year -- wait -- was it September of 2008? Not sure.) Why do I keep hurting? But asking such things might be like riding on a time machine and going all the way back to my childhood, adolescence, and younger years -- since it might have been a cumulative effect -- so I don't have to have all the answers, as long as I keep feeling better bit by bit.

Maybe it's the quality of sleep -- maybe I'm not getting enough stage 4 sleep (a.k.a. deep sleep). (In one study, healthy college-age subjects were woken up every time they entered into stage 4 sleep, thus depriving them of deep sleep. Otherwise they were allowed to sleep. After about a week of doing this, most of them developed fibromyalgia-like symptoms like widespread pain. Isn't that interesting?) Or, is my small intestine still not healed enough to absorb nutrition & turn it into energy?

The lucky thing is, Dr. Patrick Wood, former LSU professor and head of LSU Fibromyalgia Research Department and Clinic, current scientific advisor for the National Fibromyalgia Association, has come to Pacific Rheumatology Associates in Renton. (Renton is south of Seattle, between Seattle and Tacoma.) And I have an appointment with him next week! (I was in front of the line, since I got in contact with them last year, hoping to see their other doctor, Dr. Holman, who'll be concentrating on his reseach.) This rheumatology clinic specializes in and only see fibromyalgia patients. Finally, a scientific expert! Plus Dr. Wood's services are covered (as far as I know thus far) by our excellent insurance.

I had been working with Fibromyalgia and Fatigue Center in Bellevue, which is known for following their medical director, Dr. Jacob Teitelbaum's protocol. While they were helpful in getting clues to my body's various mishaps, due to high turnover in their staff, I was onto my 4th doctor (in less than 3 years) -- and that doctor recently quit.

After my 1st doctor, I wasn't confident if the following doctors could be considered experts on the subject; and my most recent doctor quitting was my final straw. Since their treatments are only partially covered by insurance (often reimbursements were miniscule), we ended up spending a lot of money there. I'm still thankful, though, because they probably kept my chronic infections at bay with all those IVs and immunogloblin shots; That meant I didn't have to reach the point of acute adrenal crisis, which I had no idea about, and I could've died from that.

...Although it is disturbing that they once considered treating me with hGH (human growth hormone), which often causes adrenal crisis in unsuspecting adrenal insufficiency patients -> comatose -> death.

Well, see, it goes to show how lucky I am. I think my grandmother's and my aunt's spirits (and many people's prayers) are protecting me. So thank you!

My sleep doc (who happens to be the director of Virginia Mason Sleep Disorders Center! He gets extra points for being married to a Mainer) is tweaking my sleep meds, so maybe that would help my sleep and stop the hand tremors I've been having. (Those of you whose emails I couldn't respond to in a timely fashion, sorry -- every time I got tired, my hand pain and tremors got worse. It took me 3.5 hrs to write this easy post.)

I have another thyroid test and an appointment with my endocrinologist in 2 weeks -- and for once I'm excited to get test results back. Will they be normal again?

I feel like things are starting to look up. Last year was a rough year (<- evident from the number of posts), because I thought I was getting better but rather got slightly worse. This year I'm getting top-notch medical care (Dr. Wood is just starting to see patients -- I couldn't have timed it better), and getting all sorts of answers. It's cloudy outside, but my heart is filled with warmth and thankfulness. :-)

And thank you, those of you close to me, (and those who prayed for me even though we're not that close) for patiently supporting me and encouraging me -- I couldn't have done it alone.

-A (who's sorry about another long post!)


また内分泌系の専門医のところへ行ってきました。先週甲状腺ホルモンの再々再々再々再（笑）検査をするために血液を採取したのですが、なんとなんと！トリヨードサイロニン（Triiodothyronine、T3とも呼ばれる、最も強力な甲状腺ホルモンで、体温、成長、心拍数などを含めた体内のほぼ全ての過程に関与している）と、甲状腺刺激ホルモン（thyroid stimulating hormone、TSHと呼ばれ、甲状腺に働きかけ甲状腺ホルモンの分泌を促す）のレベルが、両方「正常」。これは夢？？？ほっぺをつねりたくなりました。薬を飲まなくていいってこと？それが一番嬉しいかも。 0(^-^)0

（考えてみたら、TSHは下垂体からの信号によって分泌されるので、いつも何かしら下垂体が関わっているみたい。お豆サイズのくせにやってくれるな、下垂体。）

7週間の薬断ちが「おいヤバいぞ」と甲状腺を叩き起こしてくれたのか（ショック療法？）、副腎関係の治療が功を奏してくれたのか分かりませんが、新たな希望が生まれました。なにか内分泌器官を診るたびに何らかのトラブルを見つける、というパターンから抜け出せるかも知れない。

でもちょっと気になることは、、、甲状腺が働いているのに、何故しつこい慢性感染が続くのか？と去年の9月からずーっと水玉模様の喉が痛い自分は考えてしまうのです (あれ？一昨年の9月だったかも・・・。）。なんで体が痛いのが続くのかも。

その答えは一生分からないかも知れません。でも雪のように昔から積もり積もって支えきれなくなって、屋根からどしゃっ、と落ちたような現象かも知れないし、タイムマシーンに乗って子供の頃からなにがあったかをつきとめるような疑問なので、全部分からなくてもいいです、少しずつ良くなっていけば。

ひとつの可能性としては、睡眠障害のせいで一番深いレベル4（ゲームみたい）の睡眠が出来ていないのかも。（ある研究では、ピチピチ健康体の大学生を集め、そのうち半分の人達に対してはステージ4の睡眠に入りそうなときにいちいち起こして、ステージ1〜3の睡眠しかとれないようにしたそうです。なんかいじわるっぽいけど。そうしたらものの1週間ほどで、起こされている学生グループのほうは、線維筋痛症のような症状（全身にわたる痛みなど）が現れたそうな。睡眠って大事なんですね〜。）

それか、セリアック病でダメージを受けた小腸がまだ回復中で、栄養が吸収されていない・エネルギーに変換されていないという可能性もあります。あーややこしい。

でも幸運なことに、パトリック・ウッド先生という、以前ルイジアナ州立大で線維筋痛症のリサーチとクリニックの主任を勤めていた医師が、ご近所のクリニック（Pacific Rheumatology Associates）にやって来るのです。公式には2月中旬からウッド先生は診察を始めます、ということになっているのですが、私は去年からそのクリニックのホルマン先生（これから研究に専念するらしい）に診てもらいたくて連絡をとっていたので、なんと来週（1月最後の週）に診ていただけるのです〜。ついに、研究を重ねてきたエキスパートに診てもらえる。しかも（分かっている限りでは）保険が使える！

前々から、線維筋痛症／慢性疲労症候群センターというところで治療を受けていたのは親しい方ならご存知の通りですが、そこは（有名・リッチになってハワイに住んでいる）ジェイコブ・タイテルバーム先生という、FMS/CFS の分野では著名な医師の治療法を実践する、というところでした。そこでさまざまなヒントは得たものの、スタッフの入れ替わりが激しく、3年足らずの間に4人の医師（と5〜6人の看護士）にかかりました。そのたびぜーんぶ説明しなければならないし（これが疲れる・・・慢性疲労症候群を良くするところ、っていうのが皮肉）、1人目のお医者様のあとはなんか私のほうがいろいろ知ってるかも、と思うような感じでした。しかも今月、4人目のドクターが辞めるというのです。

クリニックは前払いで（しかも高い）、保険会社に書類を提出してもスズメの涙のような額しか出してもらえず、ずいぶんそこでお金を使いました。それでも感謝はしています。そこでの治療のおかげでいろいろ学びましたし、慢性感染も、もっとひどくなるかも知れなかったのを、栄養・坑ウィルスの点滴やガンマグロブリンの注射などで、ひどくなる手前で抑えていてくれたのだろうと思うからです。高熱を出して急性副腎不全（副腎クリーゼ）とかになっていたら、対応策を何も知らなくてそのままあの世へ・・・ってこともあり得たことですし。

・・・でも一時は、ヒト成長ホルモン（hGH、human growth hormone）も試してみる？とか言われたこともあったっけ。。。「いえそれはなんか怖いのでやめときます」と言って良かった〜。慢性副腎皮質機能低下症＋hGH って組み合わせは、多数の人が急性副腎不全 -> 昏睡 -> 死、となるらしいです。

というようなことを考え合わせると、私はとてもラッキーだったんだ〜、と思わざるを得ません。祖母と伯母が天国？から見守ってくれているのと、多くの人に祈っていただいているお陰だと思います。あらためてありがとうございます！ m(__)m

私の睡眠障害専門の先生（会う前は知らなかったけれどバージニア・メイソン病院の睡眠障害科の主任だった）も睡眠導入剤をいろいろ細かく調整しようとしているので、それが深い睡眠の助けとなって、手の震えも止まるかも。（メールにすぐお返事できていない方々、申し訳ありません！最近疲れると特に手が痛くなるのと、それまでよりもっとブルブル震えてしまうんです。。。実際これを書くのに3時間半かかってしまいました。）

また再来週、薬を飲まなくてもやっていけるかどうか、甲状腺ホルモンの検査をします。テストの結果が楽しみなんて不思議！また正常反応が出るかな〜。

なんだか運気が上向きになってきた感じがします。去年は、進歩してるかな〜、と思ったところになんだか前より調子が悪くなってしまったのでつらい年でした（<- ブログ更新の数から見てもわかる）。今年はなんだか次々と一流の専門医にかかれるし（ウッド先生は患者をとり始めたばかり！ですから、なんとも完璧なタイミングでした）、答え／治療方法も出てきています。まだ1月なのに幸先がいいです（関係ないけど懸賞も2つ当たったし！）。算命学を勉強した親友みっちゃんによると、2月4日以降は晴れて天中殺があけるそうですし。

外は曇りですが、心の中はあたたかく感謝の気持ちでいっぱいです。
＼(^0^)／

私と仲の良い皆さん（そんなに親しくない方も祈ってくださって）、思ったより長くなってしまった療養期間中、いつも支え、励ましてくださってありがとうございます。自分ひとりだったらきっと、とっくのとうにくじけてしまっていました。　m(_ _)m

- あや（また長くなってごめんなさい！）

新年、新診断、心新たに - New year, new diagnoses, new hope

宝船がみなさんに幸せを運んで来ますように！
I hope Takarabune (Treasure Ship) brings you much happiness!

一週間ほど遅れてしまいましたが、明けましておめでとうございます。
m(__)m（おそいって～。）　皆様、いつも進行がおそーーーい
このブログにいらしていただいてありがとうございます。
皆様の新年が幸せで何より健康★であることを祈っております。

私の年明けは・・・30、31日と続けて出かけたのがたたって、
寝込むとまではいきませんがお正月はのびておりました。
（でも大晦日にすごーくおいしい食事を大好きなレストランで
させて頂いたので、そこはとっても幸せでした。）

またしても初詣を逃した！！！　(T_T) ウルウル
でも椿神社、ちょーっと遠いんですよね。。。
（30分以上車に乗るのは振動が体に響いて
痛いのでちょっとキツイ。）

しかーし！
今年は、去年より遠出（＞30分）ができるようになりそう。

続いていた貧血がきっかけで、また新しいことが
去年の暮れに見つかったのです。

お医者さんに言われて内分泌系の専門医に行ったところ、
二次性副腎（皮質）機能低下症（アジソン病と症状は
殆ど同じなので二次性／続発性アジソン病と呼ばれる時も
あるけれど、厳密に言うとアジソン病のように原因が副腎
ではなくおそらく下垂体にある）とやらであることが判明。
（でもＭＲＩの結果、下垂体周辺に腫瘍等はなかった
　＝ラッキー。）

副腎障害の症状はというと：

• 脱力、全身倦怠、過度の疲労
• 起立性低血圧（立ちくらみ）
• 食欲不振，悪心，嘔吐，下痢または便秘
• 代謝低下
• 寒さに耐えられない（耐寒性低下）
• 目眩（→コルチゾールが不足すると失神）
• 体重減少、脱水
• 低血圧
• 筋力の低下（重たいものが持てなかったのはそういうことか！）
• 神経過敏、うつ病
• 低血糖
• 頭痛
• 生理不順または欠如、、、などなど。

失神と脱水以外だいたい全部当たってる！って
自慢にならないけど、、、(^^ゞ　ポリポリ

欠乏しているグルココルチコイド（コルチゾール）
の補充をするため、今まで飲んでいたのと同じ
ヒドロコルチゾンという薬を投与して治療するのですが、
今まで飲んでいた量の2~3倍ほど必要だったことも判りました。
（10~15→35mg／日）

要するに車だったら、コンピューター（脳の下垂体）から
「おーいガソリンが必要だよーん」という信号が全然
他の部分に届いていなくて、ガス欠のまま走ってた状態。

急性疾患（高熱とか怪我とか手術とか）の場合には
副腎クリーゼと言って、体が緊急事態に対応するために
余分に出す筈のグルココルチコイドが出ないため、
補充してあげないと命に関わることになり得るとか。
（火事場の○○ 力が自力で出せないってこと。）

で、「意識がなかったりしたらこの薬飲んでるから、
こうやって助けてね」みたいなブレスをすることになりました。

・・・判るまえに何事もなくてこれもラッキーだった。

残念なことに、これを治療したからといって
線維筋痛症や慢性疲労症候群が治る、と
いうわけではないらしいのですが、適正な薬の量が
定まってくれば、エネルギーがアップしそうです。
（１型の糖尿病のひとがインシュリンを注射するのと同じで、
もともと体が作っているホルモンを補充するので、
副作用は殆どない・・・ということなのですが、
どうなるんでしょうね。）

こんどは再来週、甲状腺機能の再検査。
6週間以上薬を飲まずに体から抜かなくては
ならないので、待ってるあいだすこーしつらいですが、
それで後々気分が良くなるなら大賛成！

今回わかったのですが、ひとつ自己免疫疾患が
あるひと（セリアック病、１型糖尿病など）は、他にも
あることが多いそうです。　例えば副腎皮質機能低下症と、
甲状腺機能低下症が両方見られる場合（多腺性機能不全症候群）
ほぼ半々の確立で１型（先天性）糖尿病も起こるそうなので、
それが今の所ないのもラッキーと言えるかも。

（ラッキー三乗だぁ！）

なので、お医者様によると自己免疫性の起因だろう、とのこと。

乞うご期待！？　体調が許すかぎり（できるだけ）更新・報告しますね～。

今年もよろしくお願いいたします。

- あや

☆日米かわいい赤ちゃんほっぺコンテスト☆
かのくん ↑ かわいすぎでしょ〜。
↑ Oh I so would love to touch those cheeks.
(Click to enlarge & see her precious eyelashes!)
Japan-America cute baby-cheeks contest!!!

I'm about a week behind, but better late than never -- happy new year!!!

Thank you so much to those of you who have the patience to stop by my blog, which gets updated exeeeeedingly slowly sometimes. :P I wish you much happiness, and more than anything, *health* in the new year.

My new year holiday was... well, let's just say it was spent peacefully indoors. I had a Dr's appointment on the 30th and a dinner date on the 31st, resulting in a dreaded two-days-in-a-row outings, so naturally I was knocked out for a few days. Nothing horrible. No death, no fuss. And thanks to our family's extraordinary kindness, we got to have a very extravagant (almost too much so) New Year's Eve special dinner at my most favorite restaurant, so I was a happy knocked-out girl.

(Holly Smith, the chef at Cafe Juanita, once again delivered the goods by making me a superb gluten-, egg-, dairy-free dinner -- unbelievably good. I felt so special!)

Once again, I failed to go to the local shrine for a traditional new-year visit... Oh well. (-_-) The shrine is kind of far away (maybe 50 minutes away?), making the trip rather prohibitive when I'm not feeling well. (Taking the vibration from bumps on the road for more than 30 minutes usually results in painful days afterward.)

But! I might be able to extend the distance which I can travel (currently at less than 30 min) this year!

Because of the persistent low white and red blood cell counts (aka abnormal aneeemia that's not caused by iron deficiency), my PCP sent me to an endocrinologist. After a few poking, lying and waiting, more poking (aka ACTH stimulation test) and an MRI, it turned out I have what's called secondary adrenal deficiency. It's sometimes called secondary Addison's since the symptoms are the same, but origins differ: In Addison's disease, the adrenal glands are underactive and unable to produce enough adrenal hormones (cortisol & aldosterone). In secondary (sometimes tertiary) adrenal insufficiency, the problem lies more in the (hypothalamic-)pituitary-adrenal axis function, resulting in not enough cortisol output (the pituitary gland is not producing enough signal, ACTH, to prompt corticol output). Ah, how a pea-sized gland can be in charge of so much that happens in the body! (It sends orders to most other glands, earning its nickname "the master gland." Sounds almost devious, doesn't it?)

In plain speak, if I were a car, the main computer (or the electrical parts after you turn the key) wasn't telling the car it needs gas. So I wasn't getting gas -- with the engine (& other parts of the car) running on an empty tank. That seems bad for the car, doesn't it.

According to the MRI, there are no tumors or obvious blockage around my pituitary gland, so that was lucky.

Symptoms of secondary adrenal insufficiency (which I've had most of, except fainting!) are:

• chronic, worsening fatigue
• muscle weakness (It explains why Daniel had to carry my purse all the time! I love a man who's not uncomfortable carrying a purse.)
  
• loss of appetite, weight loss
• nausea, vomiting, diarrhea, and/or constipation
  
• low blood pressure that falls further when standing, causing dizziness or fainting
• irritability and depression
• hypoglycemia, or low blood glucose
• headache
• sweating
• in women, irregular or absent menstrual periods

So in order to replace the lacking glucocorticoid hormone, cortisol, I'm supposed to take about 2.3-3.5 times hydrocortisone (currently 35mg/day) compared to what I was taking (10-15mg/day). In case anyone's wondering, apparently my insufficiency is not caused by having taken small amount of cortisol, because the amount I took was way too small to cause damage.

Also of note: In case of emergency (high fever, injury, etc.) or surgery, apparently I need help of extra hydrocortisone, because cortisol is a stress hormone designed to enable my body to handle additional stress. If I don't get that extra bit, I could go into what's commonly known as Addisonian crisis, or adrenal crisis, sending me into a coma or other life-threatening states.

...I ordered one of those medical ID bracelets right away. I'm so lucky nothing had happened before I found out!

Unfortunately, being able to treat this condition doesn't mean that it's a cure-all for fibromyalgia or chronic fatigue syndrome. They can coexist. However, once the proper dosages of medications are determined, I'm likely to get more energy! Hoping doesn't hurt! (Since taking hydrocortisone is replacing the body's natural hormone -- like type I diabetes patients taking insulin -- there should not be serious long-term side effects. Fingers crossed.)

The next up comes thyroid testing (whoo hoo), the week after next. I have to have been off thyroid medication for 6 weeks in order to get accurate results, so I'm prohibited to take my thyroid pills. This makes me sluggish and bloated, but if that means feeling better later, I'm all for it!

Another discovery (although I knew this in my peripheral knowledge through studying type I diabetes) was that when a person has one autoimmune disease, she/he is much more likely to have another (Celiac, type I diabetes, etc.). So my Dr. thinks my condition is of an autoimmune origin. When a person has both 1) adrenal insufficiency/Addison's and 2) thyroid dysfunction, (polyglandular deficiency syndrome/PDS type II) apparently it's very common (like, 50%+) to have type I diabetes, so in that regard, once again I'm very lucky thus far.

(Writing this, I've realized I'm lucky to the third power!)

Stay tuned... I'll (at least try to) keep you updated!

Wish me luck ;-)

- A

Making choices. - 日々の選択。

"It is our choices...that show what we truly are,

far more than our abilities."

- J.K. Rowling

"私達が本当に誰であるかは、能力よりも何よりも、

[どうやって生きるかという]日々の選択によって決まる。"

- J.K. ロウリング

Awesome blue Seattle sky from our window today!

(Sorry Chris & Ruth - but you got to see Seattle in its natural state :P)

今日は抜けるような青い空のシアトルです。うちの窓からの写真＾＾

Sometimes we see someone who is far smarter than we are (and I don't mean "smart" in school), and realize how stupid we've been. Such was the case with me yesterday.

Sure, it's a tough season for those with fibromyalgia -- each time I wake up I feel like someone must have beaten me up in my sleep, and wonder from my painful joints if I've developed arthritis to go along with my other stuff.

Sure, my chronic infections (EBV or mono/HHV6) are still active, and I've had fever each time I moved around. So I've done the bare minimum in terms of stretching and such, saying, "I'm hurting too much, & I have a fever."

But I have the luxury of choice.

I can choose to do my stretching, knowing if I don't stretch enough, my muscle may weaken and hurt more in the future. (Not receiving proper advice, there are people with FMS who become severely disabled this way.)

Others don't have that luxury.

Yesterday, I watched a Japanese TV documentary on NHK about two 14-year olds. One of them, a boy, has congenital muscular dystrophy, and the other one, a girl, has cerebral palsy. Both of them discovered boccia (a.k.a. bocce), a Paralympic sport that can be played from a wheelchair, and practice really hard to compete in the Youth Paralympics.

As I watched the boy stretch his muscles every day with his mother's help, I realized I was really spoiled. "Ouch, ow, ow," he cries, because it really hurts to stretch his rapidly weakening muscles, but he is smiling, and his mom is smiling. They know if they don't go through the painful ritual, the only road is down -- he would eventually be immobilized completely. But they have a goal, and are joyfully, sometimes tearfully, working toward that goal. In the little choice they have, they are choosing to make the best of it.

In my defense, I'm new at this -- I've only been sick for a few years, and they have over a decade of experience on me. But still, I felt stupid, because I am blessed to have all kinds of choices. I have a choice to walk on my own feet, I have a choice to stretch, I have a choice to set various goals and live joyfully.

Yet I hadn't taken advantages of those choices lately.

So I need to remind myself: No matter how sick I might feel, I still have choices. And I need to choose to make the best of each day I live.

-A

Another (not so great, I know) pic from our window -- of a maple tree. Pretty!

（あまり上手く撮れてませんが）これも窓から。きれいなメープルの紅葉！

時に、自分よりずーっと賢い人（学校の勉強とかじゃないよ）が世の中にいるのを見て、自分はつくづくアホだなあ、と気付かされます。私はかなりアホなのでそれは頻繁にあることなのですが、そんなことがまた昨日ありました。

この季節、線維筋痛症の患者が自分に同情するのは簡単なこと。毎朝起きるたびに、「何？！寝てる間に誰かにボコボコにされたの？！」って思うくらい痛いし、リュウマチも併発したか？と思うくらい関節はギシギシ痛い。

それに加えて単核症 (mono/EBV) と HHV6 ウィルスの慢性感染がなかなか良くならないので、ちょっと動くたびに熱が出る。だから甘えて、最近ストレッチとか、最小限しかしてませんでした。「痛い痛い、熱がある」って。

でも気付いたんです、それが選択できるってこと自体贅沢なんだって。

ストレッチするかしないか私は選ぶことができて、しなかったら筋肉が衰えて、次はまたもっと痛くなる・・・かも知れない。（きちんとした治療アドバイスなしにそうしてきて、線維筋痛症で動けなくなって車椅子になる人もいます。）

そんな選択の余地がない人達もいる。

昨日、（再放送かな？）NHKで、ヒューマンドキュメンタリー「ふたりの１４歳～ボッチャ　自立への階段～」という番組を見ました。二組の親子が出てきて、両方お子さんが１４歳。そのうちの一人、男の子は生まれつき筋ジストロフィーを患っており、女の子のほうは脳性マヒなので、二人とも車椅子、介護なしには生活できません。その二人とご家族が、ボッチャという車椅子でもできるスポーツに出会って、懸命に練習してユースパラリンピック出場を目指す様子を追ったものでした。

男の子のほう、高阪大喜くんが毎日お母様に手伝ってもらってストレッチをする様子を見て、「私はなんて甘ったれだったんだろう」と思わずにはいられませんでした。筋ジストロフィーで筋萎縮が起きるスピードは速いですし避けて通れないものです。「いたい、いてててて！」と言ってはいますが、彼とお母さんはこれを毎日これを笑いながらやります。やらないという選択肢はないのです。やらなければ、完全に動けなくなる日がどんどん近づいてきてしまう。でも目標があることもあり、ときどき悔しくて泣くようなことがあっても、トレーニングは喜びに満ちあふれている。選択肢がわずかな中で彼らは、ベストを尽くすことを選んでいるのです。

ちょっと言い訳をするとすれば、私が病気初心者（３年～？）というぐらいか。彼らは若いけれど、病気とともに生きることに関しては１０年以上先輩。見習うことがあるのは当たり前です。それでも、自分はアホだったな～と思いました。私にはほんとうにいろいろな選択肢があるのに、恵まれているのに、ブーたれていたから。自分の足で歩くことも選べるし、ストレッチすることも選べるし、様々な目標を立てて、幸せに生きていくことを選べる。

それなのに、最近は恵まれていることより悪いことのほうにフォーカスして、いろいろな選択ができることに感謝していなかった。(-_-;)

だから自分に言い聞かせなくてはなりません。どんなに具合が悪かろうと、私にはその１日をどうやって生きるか選択肢があるのだと。できるだけ自分に良いことを選んで、１日１日を大事に過ごしたいとと思います。

*おわり* 長いのに読んでくれてありがとう！\(^o^)

-英

おまけ

(Extra)

Only in Seattle...? We found this cute Vespa w/ a coffee cup holder!

いかにもシアトル？可愛いべスパにコーヒー用のカップホルダーが付いているのを発見！

A little family bragging -- 手前味噌ではありますが。

You can play Bunni here.

We must thank Kanpai Toastmasters members, as well as Speechcrafters (and those who made his guest speaking possible), for letting Daniel practice his speech and giving him constructive feedback. He just gave his talk at GDC (Game Developers Conference) Austin this morning, & got some instant press coverage!

Gamasutra News:
http://www.gamasutra.com/php-bin/news_index.php?story=25279
MochiLand:
http://mochiland.com/articles/gdc-austin-2009-the-rise-of-premium-flash-games

I'm so proud :-) One down, one more to go...

-A

乾杯トーストマスターズの皆さん、スピーチクラフターズの皆さん、ダニエルの予行演習スピーチを聞いてくださって、論評をしてくださってありがとうございました。　お蔭様で、GDC（ゲーム・デヴェロッパーズ・コンファレンス） Austin にて１つ目のスピーチが終わり、その後すぐに業界のサイトでいくつか報道していただきました！

Gamasutra News:
http://www.gamasutra.com/php-bin/news_index.php?story=25279
MochiLand:
http://mochiland.com/articles/gdc-austin-2009-the-rise-of-premium-flash-games

やったねダニエル。　もう一つパネリストセッション、頑張ってね～。

- 英

Weird virus?! (of a different kind) -- 今度は違う種類のウイルス？

I woke up this morning to find that all my Gmail account contacts seem to have been sent this weird message about an online electronic store -- I didn't send it! (And all my Gmail contacts have disappeared somehow.) A lot of them seem to have failed, but if it made through your spam filter, sorry (my recommendation is not to open it). I have a couple of appointments today so I have to run, but if I find out further details I'll let you know. I really don't need a computer virus, when I'm harboring some in my body!

Follow-up:
I guess I'm (obviously) not the only person this has happened to, and the only solution seems to to be to regularly change my Gmail password. Don't fret about a virus making it to your computer -- the hacking seems to happen on the Gmail server side, supposedly through SNS sites like Facebook.

http://www.google.com/support/forum/p/gmail/thread?tid=5f9f0f41a7a7153d&hl=en
(Scroll down to see commentary by "JohnW2".)

今日起きてコンピューターを開けてみたら、
なぜか Gmail のコンタクト大勢（全員？？？）に
ヘンテコリンな、「電化製品が安いよ！」みたいな
メールが送られたようでした。
私はこれを送ってないので、なんだかよく分からないのですが、
届いていたらとりあえず無視してください！　あいすみません。

そして Gmail のアドレスブックのアドレスも全部消えてる。。。
なんなの〜？！（涙）　体のウィルスと戦ってる最中に、
コンピューターのウィルスまで欲しくないっ。

何か分かったらまたご連絡しますね。

分かったこと：
これは５月くらいから流行ってるたちの悪いイタズラのようで、
Facebook などを通して Gmail のサーバー側でハックされてるので、
自分のコンピューターに影響のあるウィルスとかでは
ないようです。　ただアドレスブックが全部消えてしまって、
作り直さなきゃいけないところが涙　(T^T)
Gmail のパスワードを時々変えて防御するしかないみたい。
ぐやじ～。

-A

Wow she's getting started early. - これは目が肥える・・・かな？

I'm 36 and now just getting into jewelry, but our niece Olivia's starting out early!

自分は36にもなってやっとジュエリーを見始めてるんですけれど、
（たいてい病気の治るのに役立つパワーストーンとか・・・）
姪のオリビアは0歳にしてもう両手にブレスレット！

Check it out:

中国系のひいおばあちゃんからのギフトだから、
これも運気があがるとかなんかあるのかなあ。

Also another cutest picture ever (I'm guessing there'll be a lot of those...), Olivia & whom I assume to be her cousin Zoe:

そしてまたまた可愛すぎる写真！（きりがない？！）
オリビアといとこのゾーイちゃんです。


Awwww.　かわいい～～～。

-A

Miracles all around the world. - 世界中で起きてる、奇跡。

みなさん、お元気ですか～？

すっかり秋っぽくなってしまった、シアトル。
時は丑三つ時、外は言うまでもなく真っ暗な中、
時折雨足が強くなる音が聞こえます。

（更新するって言っときながら、なかなか調子の出ない
週が重なって、ごめん、みっちゃん！）

なにか小さなことでも、する度に上がったり下がったり
する体温。　この免疫不全による慢性感染ってのは、
１年前思っていたよりしぶといようです。

慢性の単核症（モノ、EBV）、HHV6ウイルスも、
私の熱と同じで、上がったり下がったりまだ健在（？）。
変に火照って寝汗で眠りにつけない夜が多く、
冷蔵庫で冷やした冷えピタ（ありがとうお母さん！）が
気持ちいい～。

でも、でも、小さな奇跡、そして大きな奇跡は次々と
身の回りで起こっていて、それが私に勇気を与えます。

例えば親友みっちゃんの赤ちゃん！　（大きな奇跡。）
自分に関わりのある子にはひいき目になるとは
言うけれど、ほんとに可愛いと思う！

見てくださいよ、このつぶらな瞳！
そして赤ちゃんのくせに意思の強そうな
眉と口元。　かわいすぎる～。

大きな奇跡の続き：
すくすく育っている姪っ子オリビア。

こちらのほうも、腰がすわっているというか、

人をじーっと見つめる赤ちゃんらしいです。
なんでアメリカの赤ちゃんは毛が少ないんでしょうね～。

今度は、小さな奇跡。　今年は調子が悪かったので夏休み（？）も
ステイケーション、てなことで家に殆どおり、シアトルのダウンタウンにさえ
行ってなかったのですが、だからこそ目撃できたこともあって。

あまりいいカメラがないので見にくいかも知れませんが、
フクシャ（fuchsia）のお花です。

春に近所でハチドリさんを見かけて、育てたら来るかも！
（来なかったけど）と植えたもの。　外に出かける元気が
ない毎日夏のあいだ、お天気の日はバルコニーで
気分はアルフレスコ、とお夕飯を食べるのが日課でした。

とある日、あ、この花もうすぐ咲きそう・・・と思ったとき、
パツン、と音が聞こえたわけではないけれど、そんな感じで
弾けるように、花びらがひとつ、ふたつと開きはじめるのを見たのです。
「見てダニエル！」と叫んで、そのあと５分ほどふたりで、
お花が健気に咲く、まさにその瞬間を目撃したのでした。
みっつ、よっつ、と順番に開いていく花弁・・・そして食事を終える頃、
そのお花は全部開いて私達に微笑んでいたのです。

それはまさに奇跡。　ふたりでその日はニコニコ。
こんな共同体験って、忙しく動き回っていたらきっと、ない。

この２年、いろいろな感情を共有しているけれど、
それは幸運なことだと思います。
普通の生活では気付かないこと、体験できないこと、
いろいろあるから。

雨も落ち着いてきました。　また、寝るのに挑戦して
みようと思います。

－英

How is everyone nowadays?

It totally seems like fall already in Seattle. It's 2:30 AM after a big game (UW) night.
The night outside is dark and quiet; I hear the rain come down harder once in a while. It's very soothing.

This summer has been a bit rough. It seemed, every little thing I did elevated my body temperature at night. This whole immune deficiency and chronic infections business has been trickier to treat than I thought -- a year ago, I was feeling all feisty and ready to beat it in a couple of months. (I'm competitive, so when they say "It takes a while for most people," I hear in my head, "Oh yeah? I bet I can beat it faster!")

The chronic Epstein-Barr (mono) and HHV6 viruses seem to be still well (?) and active in my body. The viruses and my temperatures have their ups and downs like a teenager's emotional drama. (I should maybe make a sitcom out of it.) I become weirdly sweaty and clammy at night; the cool-down patches (they should sell them here! It's a godsend) my mom sends me really come in handy, esp. when I have them chilled in the fridge. It feels so good on my forehead right about now.

But all those physical challenges aside, miracles are happening everywhere! And they provide me with joy and hope that the world is a nice place.

Exhibit A of a big miracle is the first picture above. He's my best friend Michiko's first baby! How adorable is he? I know, I know, they say we all become partial to the kids we are related to or associated with, but he is genuinely positively darling. I love his willful eyebrows and mouth. I can't wait to meet him some day!

Continued exhibit of a big miracle is the second picture of our dear niece Olivia. She's growing leaps and bounds, it seems like, and the way she really stares and observes people is uncanny (or so I hear). Look at those big eyes and pouty lips! I just wish I could touch her plump cheeks.

Next up: A small miracle. There are a lot of those. This year, since I wasn't feeling so hot, we were doing an ever-so-trendy stay-cation at home. I haven't even made it to downtown Seattle. But there are miracles you encounter precisely because you are spending your time slowly.

Our ancient camera's picture is not the best, but the third picture is the proof of our precious memory this summer! This spring I saw a hummingbird fly by, and in a faint hope one might come to our balcony, I started growing a pot of fuchsia. (Turns out there are huge bushels of fuchsia by the mall next door and everywhere in between, so the chances are slim a hummingbird will come to our meager one-pot wonder.)

In an attempt to feel summer-y despite persistently feeling horrid, Daniel and I did a lot of "Al Fresco!" dinners on our balcony. (It basically consists of eating our regular meals on our balcony and watching the sky and the birds and people who go by.)

One day we were having our Al Fresco dinner, and I noticed: One of the fuchsia flower looked like it was about to burst open. I pointed it out to Daniel, and at that moment, a petal went "pop!" (OK, so there wasn't really a sound, but it really felt like it went "pop!") Over the next five minutes or so, we blissfully watched other petals pop open one by one. By the end of the dinner, the flower was in its full glory. It was amazing. I mean, how many people get to witness a beautiful flower pop open, petal by petal, as it happens, with your one and only?

That was a miracle. We couldn't stop smiling that night. Such an experience probably wouldn't have existed if we had been jetting around, taking vacations like busy bees.

Over the past couple of years, we've shared a lot of emotions. Some heavy, some light, some painful, some delightful. I think we are very lucky to have done so. There have been experiences we couldn't have had if we had led "normal" lives, and our relationship is richer for that.

The rain is calming down... Maybe I'll challenge this thing called sleeping again :)

-A

A ray of sunshine. -- ひとすじの光。

The sky might be cloudy and my body might be achy, but there is a ray of sunshine: We have a new niece!

Meet Olivia:


All the more motivation for me to get well enough to travel, so I can go meet her in Maine someday. My best friend Michiko recently had a baby in Tokyo, too, so I have to go meet him as well. In fact, I haven't met most of our friends' babies... So many possible future itineraries!

-A

空は曇っていても、からだは痛くても、今週は嬉しい週です。

ひとすじの光、姪っ子のオリビアが誕生した週だから！

もひとつ、目の開いてる写真！

回復するモチベーションがぐ〜っとあがりました。　早く旅行できるくらい元気になって、メーンに会いに行きたいです。　日本にいる親友の赤ちゃんも最近生まれたので、彼にも会いたい。　（待っててねかのくん！）　と考え出すと、お友達の赤ちゃん数人に会ってません。　将来の旅行の可能性、いっぱいです。

- 英

チューリップと、雨。 - Tulips and rain.

今日は久しぶりに、外は雨。

それと足並みを合わせるように体はひどく痛く、これまた久しぶりに、壊れた蛇口のように、泣いた。 それが私を弱くしたかも知れないが、体が痛かったから泣いたのでは、ない。

人の気持ちとは、上手くいかないものだ。

今週は同じように友人の死を悼むお友達と会い、一緒にお買い物をし、気分が明るくなるかと思いチューリップの花束を買って家に生けた。　確かにそれらは綺麗で、家は明るくなったが、気持ちは残念ながら明るくならなかった。

こうしておけば、と思う手をいろいろ打っても、抑え切れない気持ちはあると知った。

でもこれを書いていて涙は止まったし、生きていれば、明日また（雲のむこうにしろ）日は昇り、新しい日がやってくる。　雨が植物の恵みであるように、涙も心にしみて栄養になるのかも知れない。

明日はチューリップを見て笑えますように。

-英

We've had a good run of sunny days, and today it's finally rainy.

Along with the rain outside my body ached terribly, and as if to match the rain, my eyes leaked like a broken faucet. The pain may have buckled my will, but it didn't cause the tears.

Our feelings, as much as we'd like to believe, aren't always controllable.

This week I saw a friend who also mourned our friends' untimely deaths, so we could support one another. We shopped together at Whole Foods, and in their glorious cheerful display, I spotted beautiful tulips. I thought flowers were supposed to cheer us up, so I bought some and arranged them in a vase.

They did brighten the room, but they didn't cheer me up.

We try all sorts of tactics to control our emotions. I learned today that emotions don't work like a neat formula.

But by writing this my tears stopped, and if we're alive, a new day will come in the morning, and the sun will rise again (even if it's behind clouds). The rain will surely nourish plants. Maybe tears, too, will sink into our hearts and nourish us in the end.

I hope I can smile at the tulips tomorrow.

-A