Another Bend in the Road

2pm:  Wow...just when David and I made a decision about the next treatment option I get an unexpected email.  This shouldn't surprise me, but I have to say I wasn't expecting this one.   For a couple of weeks now we've been earnestly praying if we are to pursue the traditional chinese medicine route for treatment.  Trust me, there's been tons of pros and cons come to mind, but ultimately we came to have a peace that maybe we are suppose to give this a try given the fact we're in their back door, traditional "western" medicine is not doing me a lot of good, and I feel time is ticking away!  I am MORE than ready to be well.  I feel like I've been patient, prayed fervently, sought counsel, kept an open mind, done everything my doctors have told me and then some. The email suggested I go to the national hospital for a consult/treatment.  Hmmm...I then wondered how I would possibly swing that (translation, etc.) when this particular doctor who emailed will be leaving the country...for good...in just a few weeks.  Well, lovely...just lovely.  Like I said, just when we thought we were headed down the right path, then we get yet another bend in the road.  All I could keep quoting to myself (after I grumped quite a bit!) this afternoon was, "The Lord gives wisdom.  The Lord gives wisdom.  The Lord gives wisdom."

On some days (like today) I feel like I don't know the voice of God and how's He leading me in some circumstances.  I know He's not trying to trick us or trip us up.  That's totally not His nature! Today, I was needing a "YES" or "NO" to what treatment path on which to be.  This afternoon I just lost it.  Completely lost it.  Yes, I had the ugly cry...again.  David was speechless, helpless- bless his heart.  I felt like I was having an out of body experience (yes, I'm still delusional due to lack of sleep and my ears are still driving me nutso!).  I know "my thoughts are not His thoughts and my ways are not His ways".  Again, trying to keep focused on His promises is H.A.R.D right now.   If I were a drinker, trust me...this afternoon would have been the day to chug a few...just sayin' (PTL I'm not though!!!).  Yes, that's evil/fleshly Mrs. Dermatomyositis talking in that last sentence : )

8:30pm:  While visiting with a friend tonight this hospital came into conversation...random.  He'd been there and met with a local doctor (who spoke ENGLISH and said was very helpful!).  So...now I have a business card of this doctor.  I get home and email this traditional medicine doctor I met with a couple of weeks ago and asked if she knew of her...she did.  She's setting up an appointment (AND she's going with us...).  She doesn't want me to panic and is trying everything in her power to set me up for success before she leaves.  Again, WHO does this in the states??? Answer: NO one.  So grateful for doctors who communicate with and CARE about their patients out here!

10:00pm:  David calls a doctor friend back in the states to discuss his thoughts on the traditional chinese medicine (he's trained in that) plus the AP therapy. Okay, first, miracle #1 that David was able to get him on the phone (and on the first try!) and miracle #2... WOW...he knew all about the AP therapy and starts quoting all this stuff that we've been reading about!  He's even prescribed the therapy to patients himself.  Nobody out here knows about it (at least that we know of).   A.M.A.Z.I.N.G  It kinda gave us goose bumps, seriously.

So....all that to say I'm MOST grateful for a God who knows just how much I can handle, swoops in and holds me tight, encourages me through different people tonight in the most obscure conversations.  Maybe I can hear His voice after all???  Okay, well, I'm (we're) trying.  Maybe we are on the right path but just another bend in the road...

These past two conversations and last email may not sound like a big deal, but trust me they are.  When I'm counting the weeks, days, and sometimes minutes for healing and relief and you feel like you're in sinking sand, EVERY bit of wisdom and encouragement is most welcome!

"HE will NEVER leave [me] or forsake [me]."
Off to get some zzzzzzzzzzzzzzzzzzzz.  Please, "May my sleep be sweet" tonight!
"JOY comes in the morning..."

Thanksgiving and no black Friday

Although our country of residence in which we live doesn't celebrate Thanksgiving, we certainly did!  Although we've seen some difficult times this year, we have a lot to be grateful and took time last week to be thankful.  We celebrated with our extended family (our friends and David's co-workers) and had a blast!  It was quite humorous to me trying to collect ingredients and cooking utensils that are not readily available here.

And we're off...four westerners, two chocolate pies, and one sweet potato casserole made it safely to the party!

NO round pie tins (or ready made crust...uggh!) in this country.  I must say my first homemade pie crust and sweet potato casserole (oh, I mean "candy") made me feel all grown up!  I DONE GOOOOD : )  WOW...I don't even want to count how many sticks of butter and cups of sugar we consumed!  Have you ever baked in basically a toaster oven???  At out house you can only use either the top heating element or the bottom heating element...not both at the same time...not too convenient for western cooking.  Oh well!  can we say improvise???  David made his grandmother's famous chocolate pies...divine!!!

Abs, wanna a little chocolate??? Love it!

My friend Chrissy made corn casserole and one of the turkeys...delish!  We had to have chopsticks, too!

Part of the gang...well, the part who didn't have to work or just got off work.

November is really "MOvember" with the AM family...Jeff, your whip cream 'stache is falling off your real one!

being funny...

Our sweet friends, Scott & Laura with the girls!

YIKES...women with knives!  You did great, ladies...turkeys were fantastic!

SO thankful for my family!!!!  THANK you for your love, support and encouragement to me this year.  I owe you big time....couldn't have done this year without you all : )

Off to shop some Black Friday sales, family????  JUST kidding... that doesn't exist out here, and it actually was quite refreshing!  David just wanted to drive his new toy.  I love you, David.  I love how you always make things so fun for the girls and make great memories with them.  I love that the locals laughed and stared at YOU while driving your motorcycle while wearing your Santa hat.  I just hate that I wasn't with you on your "tour".  You make me want to be a better mommy : )

Tradition:  we always put up our tree the day after Thanksgiving then go out for mexican food.  Well, we had to divert a tad from that plan this year.  Momma bear wasn't feeling too well, but we we did find some pretty good mexican the next day.  I think I over did it on Thursday with cooking and going out that evening.  It was fun though, and it lifted my spirits so it was worth being in bed the next day : )

"Give thanks to the Lord for He is good.  His love endure forever."  Psalm 118:29

Keepin' it REAL...

I shared most of these thoughts via an email to my family earlier yesterday, but once again I decided to post it in case somebody else could identify with me and it might help them know they're not alone.  I'm not known to speak very eloquently, but somehow I can get my thoughts out through my fingers better than my mouth.  So here it goes!  I've never been one to "put my happy face on and pretend every thing's okay kind-of-gal".  That can get me into some trouble (or rather uncomfortable predicaments) at times.  What you see is what you get.  I'd much rather answer honestly than put on some fake smile and pretend everything is hunky-dory.  I think my best "pat" answer when I'm not feeling well, grumpy or having a hard day and someone asks me the ever so kind, "Hi, how are you today?" is, "Well, I'm thankful I'm here today... OR "Well, I've had better days..." OR "I've had worse days."  See...it's truthful and about all I can get our of my mouth sometimes.  Two of my friends back home call me a "front door" girl rather than going through the "back door girl"...hmmmm, not sure if that's a good or bad thing!

Yes, it's thanksgiving week, and I have MUCH in which to be thankful.  So, maybe I should start there???  No, I think I'll end there so I won't leave a completely bad taste in my mouth...lol!

Let me back up a bit to fill in some gaps of the past few weeks in regards to my health for those who are emailing me with questions. WOW...thanks, for caring and continuing to pray for me (us!).  So here are some of the questions I get:
1.  "What exactly is the illness?"   I guess I don't really refer to it by name much...just because my family knows what it is and I assume they're the only ones who really reads this anyway.  It's called dermatomyositis or for short, DM.  "The cause of dermatomyositis is unknown. Experts think it may be due to a viral infection of the muscles or a problem with the body's immune system." (National Institute of Health). 

2.  "You don't look sick.  What's going on?"   DM is basically a muscle disease categorized by chronic muscle inflammation/deterioration accompanied by muscle weakness. It also has a lovely by a skin rash that goes along with it and for me looks like a sunburn.  My fingernail cuticles are very brittle and have what looks like dried blood in them, but that along with the rash are the only outward appearances of something is a little "off" from the disease (but who really goes and inspects one's fingernails very often!).

3.  "When did actually get sick?"  Well, that's the million dollar question!  My first symptoms of extreme muscle weakness began in mid-late February of this year.  It became so extreme that I couldn't get out of bed, lift my head off my pillow, pick up my dinner plate, get dressed by myself or even cut my fingernails. After many months of putting some puzzle pieces together in regards to other related issues I've had for years I really think (KNOW) that this disease had been brewing in my body for probably years and then KABOOM...for some reason, it was like a big, honkin' MAC truck hit me big time in early March hence my first appointment with Dr Nathalie for help.

 5.  "You mentioned you had another IV steroid treatment a few weeks ago.  What was the outcome?"  Yes, due to a bad flare up with ear pain/itching/swelling, hearing loss, muscle weakness, and an elevated CPK number I had a 3 day IV steroid treatment again.  I was put on an antibiotic as well.  I guess it did help because the pain/swelling in my ear began to subside.  Actually, the pain began to subside a bit the night before I started the IV and had just taken one dose of antibiotic.  My ear then got worse again, went to an ENT and she said I had fluid in my middle ear that was causing the hearing loss.  She put me on something to drain off the fluid.  One ear got better, but now the other ear is doing the same thing.  So, I've been saying, "Huh?  What did you say?"..A LOT lately!!!

So, now...which brings me to another consult with another doctor who practices traditional eastern medicine.  She graciously escorted me (so she could translate!) to a colleague of hers who is a physician and compounding pharmacist.  It's definitely a paradigm shift in thinking/treatment. I was grateful for the consult and willingness to think outside the "western world" of medicinal thinking.  It's something David and I are open to as longs as it doesn't get into weird stuff if you know what I mean.  This was about 10 days ago.

Fast forward to yesterday's appointment with Dr. Nathalie to discuss that consult and determine my next step in treatment and update her on my ear situation.  If you've been reading this blog at all, you know that we're continually asking for prayer, guidance and wisdom for David and me PLUS all doctors involved in my case. Well, I was hopeful going into this appointment and I had high expectations of leaving with a "plan"...a clear cut answer...a skip in my step.  Hmmmm, not so for me.  Instead, I left Dr. Nathalie with her seeing my tears and frustration (again!).  She's SO patient with me!  Now, David's been on a two day trip and I've been trying to reel in my emotions, hold it together for the girls, and again place my thoughts on the pure and lovely and all that is righteous...not an easy task for me to do at present.

So, here comes the ugliness that so spewed out me after I left my appointment.  I needed to go to the market to pick up a few things.  The security guard told me I had to put my purse in the locker....I got so mad.  Embarrassing that it sent me over the top, but I've shopped at this market for almost year and have never been asked to stash my bag before shopping...uggh.  I guess my teary eyed, swollen face with a new purse with two pretty cute little girls on me heels made me look pretty threatening to the grocery market employee???  So.... I, being the mature 40 year old that I am, rolled my eyes at the security guard and yelled at him that it's just my freakin' purse and left.  Wasn't that SO kind of me!?!?!?  Oh, brother.....  I really need to get a life!  I'm getting tired of having to ask forgiveness from my girls for doing random acts of stupidity!!!  What a great role model....geesh!

I really think am back to the 1/2 delusional stage again (or maybe completely delusional stage!) due to the increase in steroid dosage and increase in ear/jaw pain which both are not letting me get good rest at night. Just call me Insomniac QUEEN!  I cannot cope without some zzzzzzzzzzzzzzzzzzz.

Okay, enough of my dissertation and ranting and on to my THANKfulness..
1.  My wonderful and supportive husband who has been my researcher and biggest cheerleader these past few weeks (months)! Thank you for your tenacity and loving me.

2.  Dr. Nathalie who has been such a blessing to me and our entire family.  She's kind, smart, patient, available, willing, and doesn't run the other direction and hide when she sees me coming in for an appointment!

3. Family and friends (and those I don't even know!) who are interceding on my family's behalf for healing, wisdom, discernment for me PLUS my doctors.

4. HOPE found in Christ alone and that HE always listens to my cries and doesn't let me go.

5.  Our helper who has basically become part of our family...can't imagine my life without her right now.  She cooks, cleans and climbs 4 flights of stairs to do our laundry!  I couldn't physically do all these "normal" things without her in this season of my life- I could never have this back home.

6. Yunju who has offered to take Audrey An a couple of days a week to do some home school science and math with her two precious daughters.  OH, what an unexpected blessing!!!  Audrey An came home beaming yesterday!  THANK YOU.

7. Dejan and Chrissy who didn't freak out on me when I ran into them after my physical therapy appointment today.  Just seeing friends invoked a gush of tears....oh my! They graciously offered to take  "Thing 1 and Thing 2" for the afternoon so I could get some rest.  THANK YOU for being sensitive to your currently overly emotional expat friend : )

8. New day, new mercies.

9. Paula and Jerome who were able to bring back a prescription from another country that I couldn't get here.

10.  That I'm able to get out of bed.

There...said it.  feel better now. off to nappy land before hunky monkey and the girls come home.  Just tryin' to keep it real!

Our THANKFUL turkey that we've been putting feathers on each day of November!  He's pretty and plump wouldn't you say!?!

Glass anyone?

A couple of  weeks ago several home school families ventured out to tour a well known Japanese glass factory.  It was really fascinating and such a fun day for us!  We had a translator during the entire tour. At the end of the tour the hostesses graciously took our group to a lounge area where they served all of snacks and gave each of us gift....so nice! Here's our outing in pics...

On the bus getting there we see horse and buggy...

and motorbiker who decides to stop on the middle of the bridge to do a u-turn (very typical).

Peek-a-boo, Gavee and Audrey An!

Lots of workers who were very gracious and fascinated by our inquisitive looks.

HOT, HOT, HOT!

Men and women work in the factory.

Shaping the hot glass.

work stations

Chopstick holders about to be exported back to Japan.

Abigail getting to blow the glass...very cool, once in a lifetime opportunity!

These ladies had some spunk!  They were very shy and hid their face at first when I pulled out my camera.  I smiled and asked them (pointed to my camera) if I could take their picture and they just giggled up a storm!

getting ready for shipping

beautiful pieces in their showroom

 

Countries represented: USA, China, Canada, Thailand, Japan, Korea, Tasmania, Algeria...way cool!

Headed back home now.  This is a man selling charcoal starters (I guess that's what you call them!). They're short cylinders with about 10-12 holes in them.  You'll see them with a heavy load in the mornings and hopefully they have an empty load at the end of the day.

Bread anyone?

 

 Abigail's turn!

I have a ONE and FIVE year old this week!

The first week in November will always be a special time for our family.  We are privileged enough to celebrate two spiritual birthdays!

Abigail turned five on Monday....

Audrey An had her FIRST spiritual birthday on Tuesday!  Check out AA's adoption blog to read more about what happened in her life one year ago (November 24 post).

new prayer journals and bookmarks

We are SO grateful for these answers to prayers!  What a neat time, too, that their spiritual birthdays are very unique to them but are within one day of each other...just another special bond they will always have!

Yesterday, for me, started out with a sleepless night.  I tossed and turned. I finally got up and went to another room, read, prayed and....quite frankly, wept.  How the day turned for me though!  I was reading a new devotional book I had been given.  One of the many passages I looked up was Psalm 20-a familiar passage to me, but it had a very new meaning to me at 3:30 this morning.  You see, verse 6 stood out like it had headlights on it just for me.  It says, "Now this I know: The LORD gives victory to his anointed. He answers him from his heavenly sanctuary with the victorious power of his right hand."

Two words stood out to me: victory and anointed.  Both powerful words.  The word anointed had special meaning to me because on Sunday the elders at my church prayed for me and they anointed my head with oil.  I have to say, I've never experienced being anointed with oil before- just something not done too much in the churches I've been in before.  It's biblical though so I was all over that.   So, in the middle of the night I was kinda glad (after the fact!) I couldn't sleep due to the pain and weakness, but my heart was encouraged.  VICTORY over this dreadful disease sounds fabulous!  It changed my perspective on the rest of our special family day.

I was able to share at breakfast with David and the girls about my eventful night.  Of course, David and I explained to the girls in even a different way THIS year that it's awesome we get to celebrate each member  having a spiritual birthday.  David also was able to bless the girls by exhorting them in areas of maturity we already see in each of their lives.  For Abigail, we think she has some wisdom beyond her years.  She blessed my socks off last week when we were having one of our "deep" talks.  We were talking about the challenges this past year brought to our entire family.  She said, "Maybe one reason HE brought us out here was to make us trust Him more."  WOW...pretty deep for a 10 year old (rather, a five year old!).    For Audrey An, she's our little prayer warrior.  She's so specific, grateful and longs to be the one who "gets" to pray.  How cool it will be to continue to see how the Lord will work out these gifts in each of their lives.  I love unplanned and unexpected blessings with my family!

It didn't end there though...because of the reason we were celebrating we were able to share with a very special person in our lives the reason of the "party" today.  So thankful!

Momma's girls...

or daddy's girls???

Either way...this mommy and daddy are grateful!

Happy birthday, sweet girls!

Abigail snapped this, and I thought it was such a great pic!

 Abigail surprised Audrey An with this super sweet card and devotional book she made on her own.


All in all...GREAT day (despite my major lack of sleep!).

Family Date Night

It's been a challenging week for me physically to say the least so tonight we got spiffed up a bit and went out on the town to lift our spirits.  We were celebrating a new day!

So we had a progressive dinner...dinner at an italian place with a beautiful view of the lake  You like the self  family portrait?

We played "telephone".

We soon discovered it was a challenging game with one player who has medically induced hearing loss this week and another player who we call the "missing link" (no names mentioned...ahem...).  It brought some laughter and that was the intent so all is good!

Can someone please tell who told little miss abigial to go and get all grown up looking on me!?!?

 Gettin' me some lovin'!

Then...we motored on over to our favorite french bakery for dessert- yummo!! We were very international tonight!  we headed back home and watched the movie "Zookeeper".  It gave us a good laugh, but I have to give a disclaimer (like most movies!!)...had a handful of explicatives we had to fast forward.  WHY doe Hollywood feel the need for that...uggh.  Kevin James is one of favorite actors..he's just.hilarious.

Quick update on what's happening medically with me:  To put things into a nutshell I've had a pretty honkin' set back medically this week.  My CPK is back up to 1400 (definitely NOT in the normal range anymore, but thankful it's not at 8000 anymore either!), I've basically lost my hearing in one ear (temporarily) due to my ears being so swollen from the disease plus the bizarro cuticle thing has occurred again.    Not sure why all this came about, but it's just part of the highs and lows of this disease, I guess- not fun, quite discouraging.  Tomorrow, I'll have day 3 of an iv steroid to hopefully get me beyond this bad flare up that came from nowhere.  This means starting on Friday I'll have to increase my oral steroid to just about double of what I've been taking the past few weeks...arrrrgh!  It's taken me MONTHS to slowly decrease the steroid dosage.  That doesn't make me a happy camper (sniff sniff!!!).  Well, I should say, I'm happy the iv is reducing the swelling in my ear and relieving the excruciating pain in my ears and jaw.  Just not happy that I feel I'm almost starting over on the amount of steroids that I've been desperately praying away!!!

So...tonight's family date nite was all about celebrating even in the hard times, enjoying each other's company,  rejoicing that my sweet doctor hasn't given up on me (and still accepts me as her patient since our insurance is giving her (and us!) migraines!!), knowing that people from all over the world are praying for my family's situation (people I don't even know), and remembering that God will never leave us or forsake us!