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

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

Note to self - 自分へのメモ（ほんとに）

↑ She doesn't like flashes so she squints.
She's not evil. I swear.

Note to future self (seriously - so I don't forget):

Do not start any project, esp. one involving a massive amount of medical paperwork, upon wakening, prior to taking thyroid and cortisol pills. No need to start the day uphill.

-A

忘れないように未来の自分にメモ。

起き抜けに（つまりは甲状腺の薬とコルチゾールを
飲む前に）、医療関係の書類整理のような
一大プロジェクトをはじめるのはアホ極まりない
（打ちひしがれること必至）。　
ので、これからは午後にはじめること。

~~~((( -_-)フラー

-英

They're almost here! (Easy, girl) - もうすぐ！（どう、どう）

Weather: Sunny/partly cloudy; 68°F
Energy Level: 4 out of 10 (improving!)
Mood: Good!
Health: 3.5 out of 10

↑ The skinny mini tomato plant on
our window sill - grown in a bag!
Got about a dozen mini tomatoes.
I shook it, dad (in Maine) ;-)

My parents are almost here!

It's hard not to get excited, because other than my wedding they've never visited me together, and even then they had to leave while the wedding reception was still going on. (My dad had a meeting to attend back in Tokyo.) I've been dreaming about all the things we could potentially do together - it's hard to tame myself.

Yesterday I went to see my fibromyalgia doctor, Dr. Marti, and got some boost from IV shots (magnesium, anti-viral, etc.). She's always so chipper and helpful, which seems challenging for someone who see patients who are usually low-energy, tired and in pain day after day - but she manages to be upbeat, explaining your treatment plans. (Come to think of it, I guess most doctors see patients only when they're sick and/or in pain, but chronic illnesses can be certainly more depressing for all parties involved.) Her attitude cheers me up and makes me feel like it's totally possible to get better. I think, especially in certain professions, being chipper is a talent.

I'm always impressed at how well she describes what her patients (e.g. me) might be going through. I was telling her that I've been feeling like I'm trying to get over something and can't (persistent sore throat, chills, and enlarged lymph nodes). She showed me my thyroid test results (free T3 and T4 hormones), and the values are slowly creeping up. My hormones - together with cortisol levels - are getting better, albeit low. Then she said: "For many patients with chronic infections, when their hormone levels are getting better they feel a little more clear-headed, so their mind is more active than before. Then mentally they want to do more and feel ready, but the body is still lagging behind so they pay for it dearly [whenever they do take on more]."

Bingo. Indeed, my "fibro fog" (cognitive dysfunction common in FMS patients - transitory states of confusion, poor attention and concentration, and short-term memory loss) has been much better. So I want to take on more. Then when I do, my body screams.

She also mentioned that with patients with chronic infections like me, the viruses are draining the resources in the body so the rest of it can't get better. My energy is being used up to try to fight the multiplying virus causing the chronic infection, and my hormone levels are still not high enough to finish the job, so the propagation of the virus continues. And my hormone levels can't go up to healthy levels due to the lack of resources, which is being used up to fight the propagating virus. It's a vicious cycle. This is apparently what happens a lot of AIDS patients who die from a secondary infection - they don't die from AIDS, but since their bodily resources are being used up by the AIDS virus and associated chronic infections (such as Epstein-Barr), they can't fight off other secondary infections which sneak up to kill them.

Since immunodeficiency in AIDS patients and FMS/CFS (Chronic Fatigue Syndrome) patients can be similar, approaches to fight chronic infections more aggressively can be similar. They can range from taking certain anti-viral supplements long term (may or may not work and takes a long time; also tricky to absorb), administering anti-viral thymus substance and glycyrrhizinate (commonly known as licorice root, but in a much higher concentration which is impossible to ingest) intravenously (sounds cool but you have to do it often and can get expensive), to intramuscular immunoglobulin (human plasma origin IgG) injections.

I've so far gone the supplements/attempting to correct the hormone levels simultaneously route, thinking more natural/less invasive was better. Apparently it may be time to bring out the big guns, because the first approach isn't working.

The latter (IgG injections) apparently has been shown very effective in AIDS patients. Though, since it's human derived IgG, the risks are not unlike those associated with blood transfusions - even if you screen for everything, they may still find some new disease 20 or 30 years from now that they didn't screen the blood for. But the amount being injected is very little and plasma is sterilized, so the risk is minimal.

It's kind of like my troops and the virus troops are battling it out in my body, and it's at a standstill, with me losing a little bit. (This is better than before, when I was losing completely!) So I need to send in more troops. I'm waiting for my blood test results to decide what to do - in the meantime, I'll try to take it easy.

-A

天候: 晴れところにより曇り； 20°C
元気度: 4/10　（上昇中）
気分: 気持ちだけは元気です。
体調: 3.5/10

両親がもうすぐシアトルに着きます！

子供のようですがわくわくしています。
結婚式に去年の秋出席してもらった以外、一緒に訪ねて来るのは
初めて。　それに結婚式のときも、父の仕事の都合で披露宴が
終わる前に帰らなければならなかったので、あまり一緒に過ごせません
でした。　みんなで何が出来るかなー、と考えていると、
自分を諌めておとなしくするのが難しいです。

昨日は線維筋痛症の専門医マーティ先生のところに行って、
備えて点滴（栄養、マグネシウム、抗ウイルス）もしてもらいました。
線維筋痛症と慢性疲労症候群の、大抵ぐたーっと疲れて痛がっている
患者と毎日接するのは大変そうですが、それに関わらずいつも明るく、
楽観的、建設的に診療してくださいます。
（考えてみると、殆どのお医者さんは具合が悪いか、痛がっている
患者さんを診る訳ですが・・・。でも慢性の病気ってまわりも疲れますよね。）
彼女に会うたびちょっと元気が出て、「うん、きっと良くなれる！」と
思います。　明るいのも（職業によっては特に）才能ですね。

それといつも感心するのは、患者さんが体験しているであろうことを
実に上手く説明されることです。

ずっと喉とリンパ腺が腫れていて寒気がして、まるで風邪か
インフルエンザとここずーっと戦っているような気分だ、と伝えたところ、
甲状腺ホルモンの検査結果を見せてくださいました。　
（ＦＴ３または遊離Ｔ３、それとＦＴ４または遊離Ｔ４）
朝の時点でのコルチゾール値と共に数値は少ーしずつ上がっては
いるのですが、数ヶ月投薬して、なかなか健康値にたどり着きません。

そして彼女はこう言いました。
「慢性感染症を併発している患者さんの場合特に、ホルモンのレベルが少し
良くなると頭の雲が晴れてきて、頭がはっきりするのに併せて色々したく
なるんですよねー。　だから精神的には普通に活動したくなって
そうするのだけれど、体がまだついていってないから、出掛けた後なんかに
ひどいツケを支払うことになるんです。」

ドンピシャ大当たり。　確かに私の「ファイブロ・フォグ」（霧がかかったように、
ＦＭＳ の患者の認知能力が落ちること。一時的に混乱したり、集中
出来なかったり、短期記憶がなくなったりする）は最近少なくなりました。
だからもっと出ていきたいと思って活動すると、体が悲鳴をあげる感じです。

さらに彼女はこうも説明してくれました。
私のようにＥＢウイルスなどの慢性感染症に苦しめられている場合、
体の中で新陳代謝に使われるエネルギーがウイルスを抑えるのに
使われてしまうので、それ以上のことが出来ない。
ホルモンレベルが普通の人なら自然にウイルスを殺してしまうところ、
甲状腺や副腎機能のレベルが低すぎてウイルスに勝てない。　
そこでウイルスがまた増える。　そこでホルモンのレベルを
正常に戻すはずのエネルギーがまたウイルスに向かってしまう・・・。

絵に描いたような悪循環ですね。

ＦＭＳ・ＣＦＳ（線維筋痛症、慢性疲労症候群）の患者と、
エイズの患者はこうした免疫系不全になるパターンが非常に
似ているそうで、これでエイズ患者はやられてしまうそうです。
エイズ自体では死なないのだけれど、代謝に必要なエネルギーが
エイズやＥＢウイルスに向かっていくのに使われてしまっていて、
ひょい、とやって来た他の感染症にやられてしまう。
おお火事だ、とよそ見（集中？）していて、後ろからバットで
殴られるようなものですね。

エイズ患者とＦＭＳ・ＣＦＳ患者の免疫不全のパターンは
ほとんど同じなので、慢性感染症を抜け出すのにも、同じような
治療法が役立つそうです。

手段としてはいくつかあって、

1. 免疫系のサポートになるようなサプリ（漢方系含む）を集中的に
   何ヶ月か飲む（吸収の程度が分からないので効果があるかは
   個人的に大きな差があり時間がかかる）
2. 胸腺に関わる（Ｔ細胞を増やす）抗ウイルス性のある成分と
   濃縮した（飲んだら消化出来ない）カンゾウエキスなどを点滴する
   （ちょっと効くけれど頻繁にする必要がありコストがかかる）
3. 寄付された血漿からとった人免疫グロブリン（IgG）を注射する

・・・など。　これまで、 1. と、ホルモンを投薬してサポートし
正常に戻そうとしてきましたが、ちょっと馬力が足りないようで、
らちがあきません。

3. の注射はエイズ患者の治療に大変効果があるそうです。　
ただ、ひとが寄付してくれた血漿からとるものなので、
輸血するのと同じでほんの少しリスクがあります。
いま現在分かっている感染症に関してはすべて検査をして通った
血漿ですが、２０年、３０年後に「あっ、こんな病気もあった」と
気付くことがあり得るからです。　ただし、注射する量は
ごく少量で血漿は念入りに消毒されているので、感染リスクは
小さいとのこと。

体の中で、ウイルスの軍隊と私自身の軍隊が戦争をしていて、
どっちもそっちも行かない状態だけれどちょっと私の方が
負けている、のでもう少し援軍を送る必要がある、というような
ところでしょうか。　（でも前は完全に負けていたので、状況は
改善していると言えるでしょう。）
ＥＢウイルスの再検査の結果を待って、どうするか決めます。

とりあえずその間、張り切り過ぎずおとなしくしていようと思います。。。

-英

Random thoughts (aka rants) about being green and caring about others

When I grow up, I wanna work at Alfalfa's
Where the cheese is dairy free
A Birkenstocks, Spandex, necktie, patchouli grocery store
I'll have a job, picking through the produce - no pesticides for me!
I'll be a working moderate income socially conscious Boulder Hippie.

~Left Over Salmon
(Best lyrics ever)

Weather: Supper Sunny! 71°F
Energy Level: 4 out of 10 (improving!)
Mood: Loving the beautiful day in Seattle
Health: Still dizzy, & the stomach is not cooperating for some reason

↑ Silly Molly - we bought some
new high-protein, low-carb food
to see if she'd lose weight that way,
but she doesn't seem to like it. :-(
She's currently trying to talk to birds
(she actually mimics birds chirp)!

(Now that we've both finished the latest Harry Potter, we can begin to write.)

Traveling without a car... (I know, madness)

Being weak and dizzy from FMS/CFS and celiac disease forces me to walk/bus/bike more instead of driving.

At first I thought this was frustrating, but I'm beginning to think this was a really good thing.

I've always been concerned about the environment in - to borrow words from Left Over Salmon - a "working moderate income socially conscious Boulder Hippie" (yuppie poser) kind of way. Even then, I've never given up driving as much as I have lately (although I've tried to offset our carbon emission footprints through Carbon Fund).

The good thing about not driving is that you become more aware of your surroundings.

As I look around, most cars I see hold just ONE person, in a vehicle that holds 5 to 7 people. To get to work? Running errands? Picking up kids from school? I have no idea. I really have no grudge against the people who have to haul heavy things or go from a place to place in the most efficient fashion for work during the day. I just wonder about those people, with only one person in the car and no significant load of stuff, who just seem to be driving for convenience. So they can start their trip from their doorstep and save 15 minutes getting there or going home? So they can start watching TV 15 minutes sooner?

I understand, in a rural area, cars are necessary. But in a city area such as Seattle with a pretty good public transportation system, you can run most errands on public transportation (or a bike).

Of course I'm not innocent. Until I got sick, I had the luxury of thinking about these things less. But as I stand at a bus stop, I can't help to notice that cars are giant metal boxes which shield you from the surrounding environment and cut you off from your senses; I say this because I doubt people in cars are thinking of what a stinky cloud of air they are leaving behind. (I wasn't, when I was driving.) As long as they are inside the metal box they can't smell what's outside - what they are doing to the air they, too, breathe.

These big metal boxes are not unlike carrying your house around to go everywhere. It keeps your personal space, which shuts you in from the rest of the world. They keep you from walking/biking (to bus stops or to run errands, etc.), and yet people in the U.S. spend billions and billions of dollars each year on gym memberships, exercise equipment, and diet solutions, because they need more exercise - not to mention health care costs related to obesity and heart ailments.

We often hear people say their schedules are just too busy to take the little extra time to take public transportation. Yet they make time to drive to the gym to exercise, or to walk on a treadmill at home (which uses even more energy). Hmm. What's wrong with the picture here? Is this lifestyle really buying us convenience? (I'm not even getting started on U.S. oil consumption - if you're curious how bad it is, click on this link.)

I've actually been enjoying walking to/from various bus stops, waiting at bus stops, and biking - it's bringing me back to the time in my childhood when I commuted to my elementary school, about 1.5 hours each way, connecting a subway, a train, and a bus. I would meander, pick up a bouquet of weeds (I call them native plants), touch things, and entertain myself in the process (no doubt frustrating my mom to no end, because I always took longer than 1.5 hours due to my exploring the world). People in the city looked at me funny when I started singing, but I didn't care. That time spent commuting actually gave me sanity, instead of driving me up the wall (which often happens when driving).

My strongest senses are tactile, visual and olfactory, so I really enjoy picking leaves here and there and smelling them, observing flowers and fruits on trees, and brushing against lavender bushes and smelling my hand afterward.

Granted, Seattle is one of more environmentally conscious cities, while it still has ways to go. It just made the decision to make use of the methane gas from garbage as energy; we have a large bus fleet that includes electric, hybrid, and alternative fuel-driven vehicles. So I'm lucky to be able to take buses or walk/bike to most places.

I'm starting notice that, in fact, when I was driving I was getting from a place to place too quickly. I failed to notice things.

Things I notice on my travels...

For example, today, I noticed for the first time that there was a food bank next to the bus stop we've used a few times. We'd driven by it numerous times and never noticed it. (See what I mean about being cut off from the surrounding world?)

There was a line of people - with backpacks or metal carts - and the majority of them were seniors and young women. The sight made me ask myself: What are we doing wrong, as a society, that these older people and younger people can't afford to buy food?

It reminded me of the time I was talking to the Executive Director of Phoenix House in Denver, which was a supportive/transitional housing program for the homeless with history of substance abuse. (Side information: this type of ongoing supportive housing program is far more effective at creating long-term solutions than, say, emergency shelters - while important - or outpatient detox programs, which may appear to cost less at first, but much more costly to the society in a long run.)

This fellow travels to Europe and Latin America frequently, and his comment was that people might have less, but people in many other countries don't allow their family members to be homeless even if they screw up. Translation = even if you screw up (or lose your job or become sick or have a mental breakdown) once or twice, they'll let you live in their back yard shack, living room, or let you share a room with a kid.

I'm not about to advocate for not taking personal responsibility with your life, but I can't help noticing that our culture (and system) doesn't always encourage helping out each other before a catastrophe (i.e. inability to afford food and/or shelter, not having health care that your illness goes out of control, etc.).

In this country there is such a strong sense of entitlement and pride in independence. We are all somehow entitled to a car and a big house filled with furnishings, with each person having a room, and it's somehow unfortunate if we don't have those things. Since each person is supposed to make those things happen on his or her own, we often kick our kids out of the house as soon as they are ready to go to college (or kids can't wait to leave and they leave to get their own pad, because the expectations are such). Do they have enough tools and resources to cope with everything that's out there? Who knows. If you screw up, it's your fault, and you are out there with no health care, food, or worse: home.

And what we see all around, resulting from that sense of entitlement and independence (i.e. having to have your own place no matter what), is our spending culture with little social support - with the least amount of personal savings and highest rate of personal bankruptcy compared to other industrialized nations. Most of us would say we can't afford to support another family member, if push came to shove (although it may not take that much - if you let go of preconceived notions of each person needing a room and having to live independently), because of mortgage, car payment, etc. I heard somewhere that many families in America are two paychecks away from bankruptcy, if a catastrophe were to strike (major health problem, accident, natural disaster, etc.). Many others live from a paycheck to paycheck.

So the public keeps pushing the government for less taxation for supposedly larger take-home income, and the government keeps cutting social services in return - are we any more secure because of the tax cuts? Did we save more? Probably not for the majority of people. We probably just spent more. (This includes me. I don't deserve to be all high and mighty; this is as much a criticism for myself as anyone.) And there is little safety net if something were to go wrong.

I'm not going to go into the recent infuriating supreme court decision (Ledbetter v. Goodyear - sign the petition! You can still make a difference) and the fact that in this day and age, women still earn only 80% of what men earn right out of college. It just made me really sad and angry to see young women and seniors lining up for free food, in this country of supposed abundance, in a city with one of the highest college graduation rates and median income.

Someone wise (whose name I can't recall, sorry) said, the character of a civilization is measured by how it treats its weakest citizens. I tend to agree, and I get the feeling we are failing to show character.

Can you tell I'm a bleeding heart liberal? I can't wait to be healthy enough to be more socially/politically active! :-)

-A

P.S. For those of you who wondered - the raspberry/boysenberry popsicles, as well as pineapple/coconut pops (made me wanna add rum to it), were delicious!

P.P.S. Momo's lab results were okay. Ender was negative for ringworm... and she has improved. Could've been fleas/mites (which we didn't see, but gave her medicine for anyway) or something else. It's up to Pete now.

Progress = washing behind my ears - 耳の後ろを洗うことは嬉しい。

Weather: Super Sunny; 73°F
Energy Level: 4 out of 10
Pain Level: 5-6 out of 10
Mood: OK but worried about a few things...

↑ Ender (left)
sleeping on my pillow
with Momo.

Sorry I haven't posted in a while - Daniel took some time off around July 4th, and I wanted to do things together with him, and in the process I wore myself out a bit. Plus I was a bit preoccupied with cat matters.

Ender is a tiny black cat I'd inherited from a house mate a long time ago. She is 8 years old but remains kitten-sized, and has never been that tough. We had to give away Ender to our dear friend Pete last year, because she kept getting attacked by our other cats that she couldn't get down from the top of the bookshelf or refrigerator all day :-(

Ender came to visit us while Pete was out of town, and I noticed ominous little bumps on her head which she kept scratching - similar to ones she got shortly after coming home from a Denver shelter. At that time it was determined she had ringworm (not worms despite the name; it's a fungal infection, same thing as athlete's foot), and Momo ended up getting it from her.

So I took Ender to the vet, they took some culture from her skin, and we're waiting for results after they'd try harvesting the culture (it apparently takes about two weeks to try to grow the fungal culture). If it's not ringworm, it could be some form of cancer, so we'd need to do a biopsy. So we'd wait for now. We'd isolated Ender promptly afterward, and she's gone home to Pete.

In the meantime, I got nervous about Momo catching it again (only Momo was allowed near Ender since other cats tend to beat up Ender), so I inspected Momo - and it turns out she was losing hair underneath her collar. I guess it could be due to old age (Momo is 13), but for good measure we took her in to the vet, too. They didn't see much wrong with her, but they're running some lab work to see if she has a thyroid issue. So much drama. I can't imagine having human kids!

I myself am going in to my doctor's appointment today at Fibromyalgia and Fatigue Center to see about my progress. I think I am making progress with my thyroid and cortisol medication, because 1) I'm up and typing; and 2) I used to even have a hard time getting over the bath tub ledge to take shower in the morning, and now I don't dread every movement getting to that point, and I even think about washing behind my ears. That may seem like a small thing to normal folks, but it used be that I found it hard to even wash my head and body in the most basic sense because of pain and weakness, so I find joy in that I have energy to think about washing behind my ears!
-A

P.S. My awesome friend from the FMS research group, Gabi, posted another yummy gluten-free (which most are, when you make your own - I've just been lazy) drink recipe on her blog - it's horchata! I've had it in restaurants but was never sure how it was made. Very cool. I'll have to try making one! I feel like we're becoming culturally richer because I found out about my celiac disease, hehehe.

天候: 快晴; 23°C
元気度: 4/10
痛み度: 5~6/10
気分: まあまあだけれど心配事がいくつか。

ご無沙汰してしまいました～。
ダニエルが独立記念日にあわせ何日か休みをとってくれたので、
一緒にお買い物に行ったりしたくて、頑張ってる間に
ちょっと疲れてしまったようです。

それと、猫の関係で心配事があったりしたもので。。。

昔同居人が飼っていたのを引き取った、小さな黒猫のエンダー。
（ツキノワグマみたく首に白い三日月マークあり。）
８才になっても子猫サイズで、体があまり強くありません。
もともとダニエルが飼っていた２匹の猫にどつかれて、
本棚や冷蔵庫の上から餌を食べるのにも降りて来られなかったので、
お友達のピート君に去年もらわれていったのですが・・・

先々週末ピート君が旅行に出かけたのを機に、
里帰り（？）してきたエンダーですが、頭になんだかポツポツ
出ていて痒そうにしてるので、また白癬菌感染症かと
心配になったのでした。　昔デンバーのシェルターからもらわれてきた
すぐ後になったことがあって、そのとき私の飼い猫モモにも
うつったのです。

そこでエンダーを獣医さんに連れて行って、肌から菌見本を採って
培養してもらうことになりました。　なかなか自分で育てようとしても
育たない菌なので（それなのに水虫になるのは簡単?!）、２週間ほど
はらはら待たなければいけないそう。　白癬菌でなければ癌の可能性も
あるので、さらに生体組織検査に進むかどうか今は待つのみ。

その後エンダーをすぐ隔離して彼女は最近ピート君の家に
帰ったものの、今度はまたうつっていたらどうしようとモモが
心配になりました。　（他の猫はエンダーをいじめるので近寄らせなかった。）

そこでモモをよーく調べたところ、首輪の下の毛が一部なくなってる！
ということが判明。　けっこうゆるくしてあったのですが・・・
歳だから毛が摺れて抜けると生えない、ということもあるかも知れませんが、
一応お医者さんに連れていくことに。
見たところ悪いところはなさそうですが、甲状腺機能が私みたいに
弱っているのかどうか調べ中です。

は～普段から疲れてるのに気が疲れた。
猫でもこれなのに、お子さんがいらっしゃる方のご苦労は
計り知れませんね。

自身も今日、線維筋痛症のクリニックに今日出かけて、
甲状腺、コルチゾール関連の薬が効いて免疫機能が少し
戻ってきているかどうか診てもらいに行きます。

自分ではだいぶ前より良くなってきているような気がするのですが・・・
だって、（１）起きてタイプしているし、
（２）前はよいしょっとバスタブを乗り越えてシャワーに
入るのも大変だったのに、「耳の後ろをよく洗おうっと」とか
考えるまでになりましたもん。　それって普通の人からすれば
当たり前のことのようですが、一番弱っていた時は立って
頭と体を手早く洗うのも大変だったので、耳の後ろを洗おう、
と考えるようになれただけでも嬉しいのでした。

-英

P.S. FMSちけんグループのギャビーさんが、美味しい南米の飲み物、
ホーチャタのレシピを教えてくれました。　今度作ってみようっと。
なんだかセリアック病と分かったおかげで、いろいろ美味しい飲み物を
作れるようになって得してるみたい　（^o^）

When a birdlover goes postal - 鳥好きが切れるとき

In the 1988 comedy Funny Farm, Andy, a city-slicker writer played by Chevy Chase, realizes his dream of becoming a novelist and owning a home in the country. The home even comes with a charming songbird who perches at his window and keeps him company where he sets up his typewriter. Upon moving in, everything seems so charming and perfect.

Later, there's a scene in which Andy, after struggling with writer's block for weeks or months and listening to the bird, blankly stares at his feathery friend and dumps coffee on him.

I felt a bit like Andy today.

We live on the 3rd floor of our building with our windows facing some lovely big trees. To us, that was one of the selling points. We love big trees. We love birds. Even crows, with their clever social behavior, charm us. I would set up a bird feeder and a birdbath on our balcony if our HOA weren't so Nazi about it.

It's harder to love them at 4:30 AM, when you could only fall asleep past 1 AM and lovely bird chirps wake you up 2 days out of 3.

According to my FMS doctor Dr. Marti (who is wonderful to work with), getting long sleep is a major component of effective care in fibromyalgia. Patients tend to be going up against a deficient immune system, especially during a flare-up, so it's crucial to let your body sleep for prolonged amounts of time. This helps bodies mend themselves, building a stronger immune system and helping correct the screwed-up hormone imbalance including adrenal and thyroid dysfunction, both of which come along with FMS. Sleep is amazing.

When not getting enough sleep, the body is grumpier. Can't make enough cortisol to get through the day, which makes us so tired. It also makes us susceptible to secondary infections and other conditions.

It sounds so simple. But when you are in this vicious cycle (tired/hurts→can't sleep→tired/hurts more→can't sleep), getting sleep is easier said than done. It's hard to sleep through pain and overwhelming fatigue. Often it hurts just to lay down - we've invested in a new bed base, new mattress, heated mattress pad and 5 new pillows so far but still can't stay asleep every day.

And that's why I feel like shooting these birds with a water gun today. Like Andy.

On the plus side, it's another beautiful day in Seattle! :-) Maybe bird moms/dads were saying, "Today, I'll get you breakfast and lunch and dinner AND dessert!" I hope the birdies have a great day blessed with lots of bugs.
-A

1988年に公開された　ファニー・ファームというコメディー映画があります。

コメディアン　チェビー・チェイス扮するアンディは、
「田舎に住んで本を書くのに没頭する」という決心をして夢をかなえた記者。
田舎に買ったマイホームには、チャーミングなことに
毎日窓に訪ねて来てさえずってくれる小鳥までついてきます。

引っ越した当初は何もかもばら色で、チャーミングに見えます。
しかし毎日、その窓の隣に置いたタイプライターの前で、
筆が止まってしまうアンディ。　

何週間か何ヶ月後かのとある日、
一日も欠くことなく窓のふちに来て歌う鳥を前にして、
アンディは一瞬うつらな目つきで考え、コーヒーをぶっかけるのです。

今日はそんな気分になりました。

うちは３階のマンションなのですが、周りにある
大きな常緑樹に囲まれています。 家を選ぶとき、
それはプラスポイントでした。　私達は大きい木も、
鳥も好きだから。　鳥にいたっては嫌われ者の
カラスも好きです、賢くて見るのが楽しいから。
住民会が厳しくなければ、小鳥の水浴び場とか、
餌箱をベランダに置きたいところです。

でも３日のうち２日は眠れず、午前１時過ぎに眠りについて
朝４時すぎに鳥の声で起きるとなると話は違ってきます。

かかりつけのFMS治療が専門の医師（とってもお話しやすいマーティ先生）
によると、線維筋痛症の治療が上手くいく為には
体の代謝を促し癒す長い睡眠が欠かせないとのこと。
患者は既に発症した時点で免疫系の機能不全になっており、
さらにその一因として副腎機能と甲状腺機能が異常になっているので、
正常なバランスを取り戻すためには長い睡眠が不可欠だとおっしゃいます。

ちゃんと眠っていないと、体は反抗します。　一日動くために必要な、
コルチゾールが生産されないので、次の日ひどい倦怠感におそわれる。
さらに普通の人だったら防げる他の病気にかかりやすくなる。　

シンプルに聞こえます。
でもこの　疲れる・痛い→眠れない→もっと疲れて痛い→もっと眠れないという
悪循環にはまってしまうと、なかなかこのシンプルなことが
できないんですね～。　痛み止めも飲み続けると効かなくなるし。

一日が終わって横になると寝るのも痛いので、
新しいベッドの土台からマットレス、ヒーター付きマットレスパッド、枕も
５個ほど新しいのを買ったのですが、苦戦中。

というわけで今朝は、鳥を撃つ水鉄砲でも欲しくなりました。
アンディのように。

いいニュースは、雨があがってまたきれいなシアトルの１日が始まること。
鳥さん達は、「今日はい～っぱい食べ物捕ってきてあげるからね～」と
はりきっていたのかも。　鳥さん達、餌取り頑張ってね～。

My nekobasu shirt arrived! - ねこバスＴシャツが届いた！

One of the positive attributes about my parents' tiny Tokyo flat in Kichijouji is that it's close to Inokashira Park, which is connected to Ghibli Museum, a great archive of Studio Ghibli's work.

↑ This was on their rooftop garden!

Ghibli Museum is one of the coolest places ever, and it was one highlight of our trip to Japan in 2004. We randomly came upon it while walking thru the Park (later we were told tickets are often sold out - lucky us).

My only gripe is that only kids are allowed in the plush real-life Nekobasu (Catbus from My Neighbor Totoro, which is a great film for all ages).


What are we, kids-at-heart adults, to do?

To solve this dilemma, Daniel got me a Nekobasu shirt I was drooling over from ThinkGeek.com. This was a great pick-me-up for an otherwise yucky feeling week, or month.


ThinkGeek.com is one of our favorite online shopping destinations. I mean, where else can you get a Nekobasu shirt, Rubik's Cube (may I just say my brother is a genius and he can solve it), AND Doctor Who Sonic Screwdriver in one stop? (When we were dating, Daniel once bought The Red Swingline Stapler for a friend during a company "restructuring". One way to a girl's heart is a good sense of humor.)

I have a sneaky suspicion we are both geeks. That could be the only explanation to why we IM each other in a 636 sq ft condo (or we are lazy... or both).

Between my low level of cortisol with adrenal dysfunction (par for the course for FMS) and sub-human blood pressure (I was once asked, "Are you alive?" at a blood donation center, upon a 60/40-ish reading), it's impossible for me to get up in the morning nowadays. I may need a Clocky, the alarm clock which runs away upon going off.
-A

両親が住む吉祥寺のいい所は、
ジブリ美術館と繋がっている井の頭公園に近いこと。

ジブリ美術館は文句なしに楽しい、一度は訪ねる価値のある場所。
2004年に帰国した際、公園を歩いていて
ふらっと立ち寄ったのはいい思い出ですが、
入れてとてもラッキーでした。　（券が売り切れていることが多いらしい。）

ちょっと悲しかったのは、二階にあるねこバスに、
子供しか入れないこと。

まだ気持ちが子供の私達みたいな大人はどうしたらいいんでしょう。

その気持ちをくんで、ダニエルが ThinkGeek.com から
前私が欲しそうにしていたねこバスシャツを注文してくれました。

ここ一週間、というか一ヶ月ほど体調がそーんなに優れなかったので、
ねこバスシャツが届いたのは嬉しい気分転換でした。

ThinkGeek.com は私達二人のお気に入りのショッピングサイトです。
（あほらしいものが多いんだけど・・・）
だって、他のどこでねこバスのシャツと、
ルービックキューブと（身内のことだけど私の兄は天才！なので
ちゃかちゃかっとこれを解いちゃうんです～）、
ドクター・フーのソニック・ドライバーが買えます？

正直言って、私達二人はおたくっぽいかも。
そうじゃなかったらきっと、1LDKの中でIM しあったりしないと思う。
（単に怠け者という説もあるけど。　それか両方。）

いま副腎機能不全になっていて（線維筋痛症のおまけ）、
さらに超低血圧（前献血しに行って 60/40 とか出たときには、
あなた生きてる～？と聞かれた）の私は朝起きるのが一仕事。

こんどは鳴り出すと逃げ回る目覚まし時計、クロッキーが欲しいかも。。。