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