Tuesday, January 19, 2010

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



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。




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。


・・・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



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。


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!)


Ruth said...

So glad you can have a happy outlook and some things to look forward to, Aya! I am so sorry you have to deal with all of this. Here's to a better 2010!

Aya said...

Thank you, Ruth!

Here here. :)

(Raising a glass of Martinelli's marionberry-apple sparkling cider... No caffeine, no alcohol for now! It kinda looks like wine. :P)