Things that make you go hmmmm...

This is what happens when you fly to Bangkok, go straight to the hospital, and wait 6 hours for mommy to check in all in one day...bless her heart!

Just how many plastic containers can one fit on a motor bike???

We don't know how AA does it, but every time she jumps, her feet don't look like they're off the ground!

So, it's probably not everyday this waiter is greeted by "hungry dog".  I love my crazy hubby, and I would have loved to be a fly on THAT wall! 

The surgeon came in first things this morning, marked my left quad where he'd take the muscle, and I waited until noon to come around to have the biopsy done.  At 10:00 the nurse came in and said it's been postponed until Monday...maybe even Tuesday because the lab where the tissue will be sent is closed this weekend to their "Labor Day" holiday.  The tissue has to make it to the lab within an hour to start testing.  So...more waiting.  Dr. S decided to go ahead with starting the IV steroid.  I've already had my first dose this afternoon.   Two more to go.

Praises:

*The team effort that is going into my case!  They explain things to us.  They are very willing to answer all of my crazy questions!
*My chest pain is non-existent today...guess that's due to my newly diagnosed mild asthma and the breathing treatments I've already had for that!

*That some  tests are coming back "negative" thus ruling out more issues!

*The tests that are coming back "not normal" or "showing inflammation" are being confirmed and treated!

*Rachel continues to amaze us with handling the girls!

*The family is having a fun afternoon with friends (although I don't know how fun it could possibly be without me...hee hee!)! 

*I've had two pretty good nights of sleep thank to my friend, "Mr. Stronger Sleeping Pill" and "Mrs. Muscle Relaxant"!

*We had a tea and crumpet party in the hospital room in honor of the Royal wedding...actually, it was bottled water and bagel sandwiches!

Requests:
* Give the surgeon a steady hand and take muscle sample that is most affected

*That the biopsy will take place on Monday, not Tuesday.

*The IV steroid wouldn't interfere at all with biopsy results and  Dr. S will be confident in this next step of treatment

*That I would not have any side affects from the steroids and/or other meds

*Complete healing and that my muscles will rebuild themselves quickly 

*That any doctor on the team who has a different thought on diagnosis would would make their voice known and there would be 100% unity in diagnosis

I've GOT to get well, because it's absolutely killing me not being able to run around with my family and friends....that's what I love doing!!!!  sniff sniff : (

quick update...

It was another long day, but it was better than yesterday.   PTL I got some sleep last night! I was pretty loopy in the head until after lunch time due to the goooooood stuff given to me last night.  My chest pain diminished and so did my headache.  My MRI, EMG (Electromography) and NCV (Nerve Conductive Velocity...aka NEEDLES into my muscles) tests showed muscle inflammation.  The neurologist ruled out any neuro issues. I had the skin biopsy....results won't be back until next week.

Dr. S just left my room about a couple of hours ago and is trying to get the muscle biopsy scheduled for tomorrow.  This is the only definitive way to diagnose this disease. Technically, it is "surgery" and they'll put me to sleep.   Based on this result he'll determine what meds and how long.  He'll probably start the IV steroids on Sunday.  He's a good doctor.  He's personally spoken with each and everyone else who have tested me while in the hospital, and he wants to be very thorough in the diagnosis.  That gives me peace of mind.

I'm such a mix of emotions.  I'm so thankful for all the test, all the doctors, all the everything.  On the other hand, my heart sinks when I hear him say it's probably going to take 2 years to get on top of my game again and you don't need to do rigorous exercise (well, that doesn't make me sad...hee hee), and be careful in the sun....uggh.  The doctor who did the EMG and CNV is recommending some physical therapy, but not right now....it would be too painful at this time.  I'll have to readjust to another new normal.  To hear my sweet AA pray, "Please, God, help mommy feel better,  Thank you for Rachel being here.  God,  please help mommy feel better" just makes my heart swell.

Our new friends, Scott and Christine, who dropped in yesterday!!!!

watching the Royal Wedding...

while David.....

Signing off~

Loooooong day

Ask me two hours ago if I'd be blogging tonight, and it would have been a big, fat NO!  Let me back up a bit though.   I had a lovely breakfast all by myself in a very lovely hospital room, but I didn't feel very lovely.  I've been up since 4:00am (yes, my pretty normal wake up time these past few weeks).  On a positive note, it was a really yummy breakfast and it was delivered with a beautiful pink rose.  nice.  OH, and the view isn't too bad either! 

Wish it were a better shot, but camera phones just don't work too well.

My peace and quiet didn't last too long.  I was whisked away via wheelchair to my first appointment of the day- the opthamologist.  All good there except for dry eyes and I'm blind as a bat, but that's not new news!   I was then surprised by VISITORS!!!!  Yes, can you believe it???  David and I heard a knock, knock, knock ans in came the brother and sister-in-law of  friends back in the states who are here for a few days.  SUCH a fun surprise...thank you and nice to meet you, Scott and Christine!  I am so touched that you dropped in to cheer us up.  Of course, I took a picture but forgot to download it before David and the camera went bye bye. 

Then....the dermatologist and ENT. I was not a happy camper during my ENT visit. All my reports came back good, but it was very painful.  Just sitting in the wheelchair waiting to be seen by the doctor wears me out.  Then he had me sit in this super straight chair which he then proceeded to  "flip" me on my back where I started crying and yelling for him to sit me back up because the pain in my neck and chest was so intense.  Tears began to flow, and....well, not good.  I was told I needed to "cooperate'.  Hello!?!?!  I'm lying flat on my back, not moving (because I can't!), and he's frustrated that he can't get the right angle to examine my ear.  I really wanted to slap him silly, and I'm so not the slappin' type! AND...getting your ear wax suctioned out when you have pain and inflammation in your ear is just not a good feeling.  

David was with me a good portion of the day while Rachel entertained the girls- shopping, swimming, and I'm sure a host of other things for which I'm most grateful!  She's getting a good taste of mommyhood, that's for sure.  Late this afternoon my pain became so horrible again.  I was just over the top.  Enough that I went into the "ugly cry", called for pain meds, and David went to hunt down a nurse.  JUST when I cried out to HIM for help, "Dr. S" comes walking in...PTL!  Again, he's the"man in charge here and am so grateful for him.  I kind of hated to be so upset when he entered, but I'm actually really glad he saw the state I was in.  He ran down all today's results with us, and yesterday's blood tests.   Good but frustrating at the very same time.  I'm grateful my numbers are dropping, but I'm feeling worse.  So, here's the run down for my family...(they want details!).
*CPK down to 3363!
*Liver and kidney counts are good!
*Lung xray- clear!
*Pulmonary Function test- showed I have mild asthma (that just might explain why I couldn't breathe during real well during basketball and track growing up!?!?!)

He was encouraging and mystified all at the same time. He's not sure why I'm having the chest tightness, but as a doctor  he says "on paper" I'm doing better, but that doesn't help me out in other regards at the time being. 

Tomorrow will be another long testing day so strength and grace is needed.  I'm having a MRI, EMG, skin biopsy on my chest (due to the red rash) , muscle biopsy (pending MRI results)  and neurologist consult.  I think there's something else, but I can't remember!  Dr. S ordered me some gooooood meds tonight and I'm hoping they're about to kick in.  So...hasta luego, baaaaaaby!!!

Checked in...finally!

Here's a modified email I sent my family last night...

Well, it's 8:30pm and I'm JUST NOW have gotten to a room.  I'm toast...like with butter, jam...and really burned : ) : ) : )  No, seriously...I can't believe the exhausting day it has been , but HE has been so faithful!!!! Praises from today (well, technically, that would be yesterday for me now!):  taxi found our apartment and we arrived on time to the airport, wheelchairs were available at both airports (one was even waiting for me with my name in Bangkok!), I did GREAT on the flight...ears popped quite a bit but no intense pain!  I had a window seat so I could lean my head on the entire flight.  I know the rest of the family was probably secretly grateful I was in a wheelchair because "their patient" successfully bumped them to the front of all airport and immigrations line....thank you, very much!  Abigail and Audrey An were thrilled that their airplane seats were pink, purple and gold and the cabin crews wore pink and purple....how girlie is that!?!?!  I think Thai International may get some more of our business due to the color scheme!

"Dr. S" (the rheumatologist and main doctor in charge) is going to take me off all my meds (except my hormones...yeah, buddy.  better watch out on that!) for 1...maybe 2 days to get a base line of what's happening before he begins any other meds including IV steroids.  He's not 100% it's dermatamyositis, but's said it is the most closely related thing though right now, but the cases presented to him have had my symptoms but not typically the level of PAIN...weakness and fatigue, yes, but not so much pain.  David and I really like Dr. S....he's  a thinker.  Maybe everyone putting a piece of the puzzle together and brainstorming together will trigger something spectacular!  We continue to trust the Lord and HIS wisdom through all the doctors involved in my case for the answers.  Maybe that's how HE may choose to answer...

He took blood levels again, chest xray, and and 1 1/2 hr. pulmonary function test (8 tests!!!). I'll have a MRI of my quads, possible muscle biopsy and EMG (depending on MRI findings).  I'll see a ENT, opthamologist, dermatologist, and "Dr. Infectious Disease"...and who knows who else!!

I'm wiped out, but my SUITE is sweet!!!!!  It's like a 5 star hotel.  Hoping to get some great rest tonight.  OF course,  there was some insurance glitches (like before) but I think we got it all worked out.  Rachel and the girls were amazing!  What I thought would be (don't know why!) a fairly short appointment, check my in my room, etc. turned into being a 6 hour ordeal and I didn't quite remember to pack a "goody bag" for the little munchkins...uggh.  Rachel took GREAT care of them though....she's the best!!!  You are just going to come live with us from now on, right???  Yeah, I think that's what I heard you say.  No, I'm certain : )

Love to all...nite nite (hopefully!!!!)
me

synced in...waiting to board

Yes, I usually match the girls when we fly...it's just easier to "spot" them!  Where's your matching dress, Aunt Rachel (maybe with the mask???  LOL!)

one of Rachel's adoring fans!  Abigail is going to have Rachel withdrawls when she leaves us : (

In-flight meal

I'm beat...after leaving our apartment at 7:30, flying, wheelchairing, testing, checking in...  Awesome and modern room with beautiful view at night out the window and David trying to beam up my signal so I can stay connected to the outside world : )

it even has a little kitchen!  Anybody want just hop on over, and we'll have dinner together right here!?

Well, my feet got cut off, but trying to show you even the beds here are for short people!  Oh, I had to laugh when then were doing my weight and height.  The nurse told me my height in centimeters (which I cannot convert in my head so she did for me), and I said, "Oh, I've grown an inch!"  I think they just couldn't reach the top of my head to measure accurately.  It was kinda funny and we all had a good laugh!  

Okay, so now that's 5:45 in the morning for me, maybe I should try to get some more zzzzzzzzzzzzzz.  Must. Have. Stronger. Sleep. Aid. while I'm here!!!!

I praise HIM for he completely sustained me (all of us!) through a very long day.  I honestly felt HE had my little weakened head and neck in the palm of His hand thoughout the day because normally I can't hold my head up for too long at all.  Thanks for praying and I know God's power and people praying are sustaining me.

Insomniac is up

Mrs. Insomniac is awake awaiting for the travel alarm to go off soon (shouldn't that be the other way around?). In just a few hours we'll be boarding our flight to Bangkok and head straight to the hospital.

Specifics requests for today:
*Smooth connections (specifically, that even the taxi will FIND our apt and get us to airport on time)...thank you, Gregg for arranging that for us!
*Physical strength and endurance for a gruelling day on my body. "My grace is sufficient for you, my power is mad perfect in weakness." II Co. 12:9
*Wheelchair to meet us at each airport.
*I would find a position on airplane to hold up my weak head/neck.
*No pain in my ears/chest during flight. ""The angel of the Lord encamps around those who fear Him and He delivers them." Ps.34:7
*Grace for all travelling and many blessings on "Aunt Rachel"...our special friend who changed her plans again to go with us and "hang" with the girls!

"The LORD your God, who is going before you, will fight for you...before your very eyes..." Dt. 30:1

I don't think I've ever been so ready to be hospitalized.  Is that just weird???? Okay, don't answer that! My girls are beyond excited about McDonald's and Subway again, too!!  It's the little things in life, ya know : )

Answers today, flight tomorrow (or next day)

Just returned from appointment with Dr. Nathalie here at the local clinic.

Bangkok, Round #2...here I come. I praise HIM for this answer. This is what I've been wanting to do and David and I were in complete agreement (one of my many specific requests has been unity and peace in decision!). She was very decisive about going which also aided in our peace.  Dr. Nathalie is emailing my doctors in Bangkok right now. Wednesday (most of your Tuesday night) will be the earliest departure in order to get things coordinated. This will be at least a 3-4 day hospitalization with IV steroids along with some other testing.

Praise that David already had these days off since he was suppose to be in the states for work purposes.   Obviously, he'll not be going this week as planned and will be my handsome escort to Thailand. I really hate that he's not getting to go back to the states (for professional and personal reasons).

Our sweet friend, Rachel, has been here this week.  She had already purchased tickets to come visit us prior to my illness.  WHAT A BLESSING she has been to all of us!!!!  She has helped with the girls.  She's cooked.  She's cleaned.   She's helped with school.  She's been playmate to them both....bless her lovin' heart!!    She's taken them on magic carpet rides.  She's taken so much burden off of David and me.  She helped the girls...did I say that!?!?  She has made my girls so happy and giggly and has just warmed all of our hearts.  Since she's lived overseas for several years so she "gets" it...weird transportation, grocery shopping, etc.  She's gone with the flow and knows how to go with the flow.  HUGE...when living in a foreign country!  I've been so burdened for the girls b/c I had really started seeing it talking a toll on Abigail.  Again, HE knew of the timing of her trip....so amazing and we PRAISE Him for it!!!  Many, many blessings to you, "Aunt" Rachel!!

Dr. Nathalie, if you happen to be reading this again....YOU have been wonderful and such a blessing to us!!  I truly praise the God who created me for your care, kindness, professional expertise. willingness to consult with other doctors, and check in on me numerous times on your holiday!  I promote you to Chief Medical Officer, okay : )

Requests:

*Continued wisdom for all doctors involved, no test unturned or question unanswered  "For the Lord gives wisdom!!" Pr. 2:6

*Logistics of trip- flights, girls

*Strength for the flight/travel "my grace is sufficient" II Co. 12:9

*We'd continue to trust in His plan  "Trust in the Lord with ALL your heart and lean not on your own understanding.  In all your ways, acknowledge Him, and He WILL make your paths straight." Pr. 3:5-6

*Encouragement for David

*Complete healing

*That I would have no fear.  "What time I am afraid I WILL put my trust in Thee. " Ps. 56:3

Easter Sunday morning.  I went ahead and attended Sunday morning service....it about did me in, but I could NOT imagine not going.  LOTS to celebrate!  OH, and nothing like riding a motor bike in white linen pants, ya know : )

Masterchef Rachel

No egg dying kits here...just good 'ol paint and a lot of mess!

LOVE LOVE LOVE my main squeeze!  David, I love you so much.  You've been extremely patient and caring through all of this!  I'm glad we get to do life together : )

Wonderful symbols of the core of my faith.  Ask me about what the color of the eggs mean : )

Indulging in a little chocolate treat....

my girls : )  Rachel has brought us all such joy!

How many times can YOU say, "chubby bunny"????  hee hee!!!

the serious pose....I guess I would be kinda somber of I had marshmellow "rats" hanging out of my mouth!

My mom has always been one of my stroongest prayer warriors.  How grateful I am for her prayers and encouragement...She sent me the following passages when she learned of our upcoming trip....thank you!  There some of my favorites!

"I sought the Lord, and He answered me; HE delivered me from all my fears." Ps.34:4

"We wait in HOPE for the Lord......HE is our help and our shield.  In Him our hearts rejoice for we trust in his holy name.  May your unfailing love rest upon us, O, Lord even as we put our HOPE in You."   Ps. 33:20-22

"The angel of the Lord encamps around those who fear HIM and he delivers them." Ps.34:7

"HE is close to the brokenhearted and saves those who are crushed in spirit.  Ps. 34:18

"HE will fight for you while you keep quiet (or still)" Ex. 14:14

"The Lord your God who is going before you will fight for you."  Dt. 1:30

"Do not be afraid ...The Lord your God himself will fight for you."  Dt..3:22

"Our God will fight for us!" Neh 4:20

"They (your disease, translated by mom) will fight against you, but will NOT overcome you, for I am with you and will rescue you, declares the Lord." Jer. 1:19

"For I know the plans I have for you says the Lord, plans for welfare and not for evil, to give you a future and a HOPE." Jer. 29:11

"Be strong and courageous.  Do not be afraid neither be dismayed for the Lord your God will be with you wherever you go." Josh. 1:9

love you, mom

Room with a view

Well, like I said yesterday..."Joy comes in the morning" (or it was actually this afternoon!)!  I had a MRI of my head this morning, and it was clear...PTL!!!!  What a peace of mind that swept over me when I read "no abnormal findings" (David may disagree...hee hee!)...cannot begin to tell you!  I've got the apartment to myself again right now, and I must say I feel a weeeeee bit better.  A little stronger.  A lot relieved with MRI result.

This was my "room with a view" coming/going to the "MRI place".  WOW...THAT was experience!  An incredible modern piece of medical equipment in a...let's say flash back in time setting.   I was transported via ambulance (sirens and ALL).  If you didn't have a headache before the ride, you did 2 minutes into the ride!  I had to chuckle with David as I lay on the gurney in a foreign country, listening to the howling siren, looking outside in the reflection of the medical cabinet, listening to the nurse and driver talk, and trying to brace my body as I know we were darting chickens, motor bikes and who knows what else in the busy streets.  Good thing I wasn't bleeding to death because it was a mighty slow drive in an "emergency" vehicle....just sayin'.

 

 

 

parking...pull right up.

all warning signs on door were in different languages...not in english and not in even this country's language (???)

I know you're thinking why would I take a picture in the ambulance, but I just had to....it was QUITE a memory.  One that I told David that I was actually quite grateful for (in a funny little way!).

So, when I was returned to the clinic I was able to meet with the doctor who has been seeing me in the absence of Dr. Nathalie.  We retested my CPK and other numbers and discussed our options.  CPK continues to decrease.  We're at 4160 today....yeah!!!  So....asking for wisdom/discernment about hospitalization even though my numbers are doming down.  Praise:  Rachel has agreed to postpone her flight back home a few days in order to help us here.  YOU rock, Rachel...words cannot express our gratitude!!!!  I have thoroughly enjoyed spending time with you this week.  My girls love you, and you have made SUCH an impact in their lives (mine as well) this week!

Wait and Speak

It's been a few days since an update and people are starting to ask:
1.  How are you feeling?
2.  Any plans to come back to the states?

So...let me answer for those asking. 1.   I'm still in a lot of pain and continue to have tremendous weakness.  Not to be a "downer", but to me I really don't see any remarkable improvements to date.  Yes, improvement in my CPK number, but no to improvements in the way I'm physically feeling.  Two doctors have recommended that I be hospitalized so I can obtain IV steroids.  I'm open to that-actually very open to that. The trip back to Bangkok would be quite gruelling on my body.  Since I continue to have pain and pressure in my ear and eye and now have had a headache for 3days I want to know for sure everything is "okay" in my head/ear prior to making a flight.  I'm hoping to get a MRI or CT Scan very soon in order to rule out/in anything concerning that...may all tests be taken and interpreted accurately so we can deal with whatever may come our way.

2.  No, we don't have plans for me to fly back to the states for treatment.  At this point there is no way I could make that long of a trip.  It would take 28 hours door to door with a change in planes, etc.  My body just cannot simply do that right now.  I can't even fathom that possibility.   Bangkok docs know my case so it makes the most sense to return there even though it will be somewhat of an ordeal to get there.

My day to day is so dynamic.  Yesterday morning I was able to sit up for some time, but I completely tanked in the afternoon.  I spent all afternoon in the bed in pain.  We have a sweet friend who flew in to tour around with us, and bless her heart she's not getting to see as much as we'd hoped for her to see!  Rachel has been SUCH a blessing to our family though, and we're thrilled she's here despite our circumstances.  We had some friends over last night for "taco and salsa" night.  I have to say it was the first time I threw a dinner party with me in the bed (well, actually, the Christmas party at our house before a week prior to our move runs a close second since I threw my back out of whack then!)!!!  Thank you, David, and everyone else who contributed to the meal!  It was nice to have some fellowship- it was really nice to see my hubby have some laughs and get his mind off things for a couple of hours.

More blessings this week:  Doreen came to deliver some spring rolls from Giao and we had a sweet, sweet time of fellowship.  Jill, provided a meal on Tuesday.  Can we say, "homemade tortillas"and "pumpkin bread"...yummo- ahhhh, comfort food!  Just a fun tidbit about Jill- as soon as we met we made a fast connection.  We learned that she grew up across the street from one of David's aunts and uncles and she went to school a stone's throw (literally!) from the house David grew up in....is that NOT a small world!?!?!

Before I sign off...it's funny how certain songs I've heard for years have come to mind throughout this illness- songs that have more meaning to me now based on my situation.  I pretty much keep music playing in my ear all day-especially when I'm here alone.  Yesterday,  this song came across my iphone, and I wept like a baby.  I love how Truth is "living and active"...it meets you where you are.  Also, kinda cool when I looked up the video it was on the beach!  This song has been my heart's cry the past few days..."speak".  The other song was "Breathe On Me"  (I'm not familiar with the singer or choir, but my sweet friend, Jenny, found it on line which I was unable to do...THANK YOU!!).  Interesting that when I thought about it the songs have the same theme...no coincidence.  We continue to wait on Him.  Quiet can be hard sometimes.   I rejoice in advance of the songs I will get to post that have confirmed healing- I wonder what they'll be : )

"Weeping may endure for a night, but JOY comes in the morning." Ps. 30:5

Getting a little "help" today from dad on a VERY windy day on the bike!  Yes, you guessed it....David's on the motorbike.

Abigail showing Rachel how it's done and headed to our the French bakery for lunch!  Remember my favorite chocolate tart???

update:  clinic doctor just called back and is ordering MRI...PTL!

sweet memory

Today, I had too much of apartment life and asked my man to take me out for a spin.  So...I "geared up"
 (aka lathered up with SPF 50, put longer pants on, sun visor, and even a long sleeve shirt...oh my!) to protect my "derma" from my favorite vitamin in the entire world..."D".  The girls rode their bikes to the "park" (the cement block at the end of the street) and David escorted me via motorbike since I can't walk that far.  That didn't last long because someone had moved my park bench!

We then rode around the lake for a bit...just to tank it up the bike and buy an ice cream.  We parked in the shade to enjoy some sunshine and watch the monkeys swing on the trees (Abigail!).   I got overwhelmed with emotion (imagine that!).  The first was utter joy and contentment due to being outside and not in the apartment and enjoying my most favorite season of the year!  Then I got choked up realizing how disabled I am right now and can't do the things I would normally do IN this beautiful weather.   Then in my extreme effort of dwelling on things above I had the funniest and sweetest memory, too.  I grew up going to the lake.  We had a boat, and I have SUCH fond memories of the lake.   we had the best sandwiches and "Little Debbies" on the boat (and why are sanwdwiches better on the boat??? I will never understand that).   I learned to water ski at an early age....I was a duck, truly.  We even washed our hair in the lake if it was on a Saturday so that was one less thing we had to do prior in preparation for Sunday morning.   I loved (and still do!) the water and sun.

Many of those boat trips (and beach trips) were with my mom's parents who we affectionately called "Ga and Dad-Dad".  Now, my grandmother is referred to as "Nini" (my oldest nephew renamed her when he first began to talk).  All of us made fun of her because she would wear this bright, yellow, long-sleeved shirt and a hat at all times when she was in the sun.  Family, you know the shirt!!!!  How old is it now???  We weren't really making fun of her.  We just all teased her out of pure fun (and she was and is a good sport about it)!  Anyway...when we were eating our ice cream this afternoon I looked down to see a zillion yellow leaves.  They were the exact same color of Nini's "lake" shirt.  I just laughed and shared that story with my girls, and they thought it was funny.  This same grandma is the one who quotes Ps 103 "Praise the LORD, my soul; all my inmost being, praise his holy name. Praise the LORD, my soul, and forget not all his benefit"— before her feet even touch the ground each morning.  Nini, I love you and I enjoyed remembering you and your funny lake shirt today!   Now...I am the one who has to wear the "yellow" shirt!   It was a sweet memory, but it made me miss my family.  Mom, stop....I know you're probably crying as we speak. : )  Pray for my momma, too.  She is scheduled for back surgery in early May, but it in so much pain, she called to see if they had a cancellation this week....uggh.

THE yellow shirt color!

My little monkey

not a really clear picture....workers taking a break (their shirts just need to be mustard yellow!)

rowers on the lake

Yes, this is the foam that was purchased to "help" soften my bed....ummm, it's better for wrapping daddy up like a burrito!

Thankful for many things this weekend.  Mr. Gregg taking the girls to Sunday meeting yesterday while I stayed behind to rest and David had to work, David and the girls riding bikes with our friends Julie, Kyle and their sweet daughters, friend coming to town tomorrow, better sleep the past few nights, Dr. Nathalie emailed back on her holiday (again...so kind!), skyped with family and friend back home, and I'm enjoying a new study by Priscilla Shirer, "Jonah".

a little bit of sanity?

Okay, I must report that I FINALLY...I got some sleep last night YAHOO!  I can't remember when I actually slept through the night, but last night was a start.  It took 3 hours for a sleeping aid to kick in, but it kicked and I'm most grateful.  I'm quite confident that some sleep will aid in my healing and in my sanity at this point.

My little angel, Doreen, came for the 3rd day in a row to provide a delicious meal for us.  Words cannot express my gratitude, and when I grow up I hope I can be as compassionate and helpful as she has been.  THANK YOU.  I must have dozed off on the sofa while she was still here so she just slipped out quietly without me knowing.  You're kindness is most appreciative!

Today has been quite uneventful. School (girls are trying their best, bless their lovin' hearts!), rest (me), play (girls), read (for those in the house who can!), drink (I think I can float Noah's ark with all the water I'm consuming!).  School, rest, play, read, drink...Oh, I did pluck my eyebrows for the first time in like who knows how long.  Who knew having 1/2 way decent manicured eyebrows would give me such pleasure!!! When you spend your entire day staring at the walls or the ceiling you think about funny things...sorry!  Actually, it gives me lots of time to think.  Remember..."things above", Christa!!!  Since I had a little bit of time on my hands today (lol!!) I strolled down AA's adoption blog to remind me of HIS faithfulness...wow.  HE is faithful, and HE will see us through this.    He IS seeing us though.  I have NO doubt...none.

Along with restful and pain free sleep tonight, I am specifically asking Him to reveal wisdom to Dr. Nathalie (and the rest of the team) about our next step in treatment and we will have a peace about whatever it may be.  David and I feel like some decisions need to be made but want to be patient for the right answers.  We know they will come.  If you didn't know, "waiting" IS my middle name.  David and I were discussing prior to him leaving for work that it's interesting for us to see the big picture from our perspective.  There are so many docs who have been brought in on my case seeing it from their perspective.  Each one have provided a piece of the puzzle.   How grateful I am for each of them!  I'm so thankful for the sleep last night, and I do sincerely hope that my body begins to readjust to that wonderful little thing called sleep and I'll begin to see remarkable improvement due to rest, medicine and His healing hand.

My wonderful husband made time to teach our Jr. Master Chef, Abigail, how to make his famous omelets this morning.  David, I love you, and I know you're worn out.  YOU will make it, too.  Just know your girls love you and think you are preeeeeeeettty incredible!   Muuuu-wah!

So...peace out for the sleep and sanity!

Pineapple Party

I had another sleepless night last night.  I woke up David about 1:00 am with a very weak voice saying, "Something is just wrong.  I'm scared.  I know I'll be okay, but I think we may need to go to the hospital...or something."  My muscles were just on fire.  I felt like Mrs. Incredible Hulk, and my muscles were just trying to pop out of my skin.  My body was so tired but just didn't have the ability to sleep.  I got up and David said, "Where ya going?"  I said, "I'm going to eat pineapple and lots of it!!"  He followed me to our loft and cut me up some nice, fresh pineapple.  We had spent the past few hours reading on the internet about different foods that can relieve and can cause inflammation.  Pineapple is suppose to help...so I was going to eat me some pineapple!  Who knows, honestly.  I've almost been paranoid about anything I stick in my mouth to eat.  Everyone has a different opinion of what's good, bad, and ugly for you...I'm starting to get confused and frustrated.  Two days ago (the night after I had seen a very slight improvement) when I started heading back downhill someone emailed and to stay away from tomatoes...they cause inflammation. Well, guess what???  That was the night I gorged myself with David's homemade salsa.  Seriously???  Maybe it was the cause, maybe not.

The following ecard was sent to me this morning.  Kinda funny that some of the following were the things we were talking and praying through at 1:30 this morning prior to opening the email...during our Pineapple Party.

"Difficult things can cause us to ask,

"Why did this happen?"

But if we're trusting in Christ we never need to ask,

"How could He let this happen?"

God may never reveal all His reasons to us

But He has revealed His character to us. 
His character assures us that He never makes mistakes,

is never uncaring, and that He never separates Himself from our need.

The need you face is great, but the grace that is yours in Chirst is even greater.

May your heart and your faith stay fixed upon Him as you go through this difficulty.

Be assured that He is holding your hand and will not let go."

I went back to the clinic to get my blood levels checked again this afternoon.  Amazingly enough my CPK has decreased almost 2100 points...now it's down to  5770.  David and I were SHOCKED.  Based on the way I was feeling (significantly worse the past two days) I was expecting to hear they were in the 8000-10000 range.  Not so and PTL!!!  The doctor said since the CPK is still out of the ballpark high I can't exactly correlate the way I'm feeling quite yet.  I think my case pretty much baffled him and my wonderful Dr. Nathalie is on holiday right now.  His recommendation was to return to Bangkok.  I'm not ready to do that quite yet.  I still need some more answers from here and consults there before I commit to that kind of trip again.  I would a VERY difficult trip on me at this point.

Praises:
*I received all test results back today from Bangkok and all came back negative to some other serious diseases!
*I was able to ride the motorbike to clinic (with some sunshine and wind on my face!) then have a lunch date with AA and David while Abigail had a playdate with Brittany!
* Doreen brought our dinner!
*Right now...my neck is stronger and am able to hold it up!

Requests for my night:
Hebrews 4:16 says, "Let us therefore come BOLDLY to the throne of grace, that we may obtain mercy and find grace to help in time of need." 
*that my sleep would be sweet ("When you lie down, you will not be afraid; when you lie down, your sleep will be sweet." Prov. 3:24)
* that my right ear will pop open and my throat will stop hurting
*that wisdom would be given to all involved in my case ("for the Lord gives wisdom." Prov. 2:6)
*that He would strengthen and encourage my sweet husband.  He's carrying a big responsibility (Mr. Mom, Employee, Teacher, Husband, Grocery Shopper, Meal Maker AND he's supposed to fly back to the states for a checkride...accompanied by this country's equivalent of the FAA- no pressure!)
*that our girls would remain secure, patient, well
*that He would continue to reveal Himself to us

Looking through these pics today.  This was on our vacation in Phu Quoc...I think where this lovely disease was kicked off- or at least my first symptoms began.  It was paradise though!

major pain...again

Okay, call me crazy,  but it's now 1:15 in the morning on Tuesday now for me....and I'm dying in pain again.  As soon as I went to bed (on my oh- so- not-so- soft- new-foam- mattress- topper -purchased- today) I almost immediately began hurting again.  Yes, everything I said less than 24 hours ago is true, and I'm MOST grateful for it, but thing can change in a blink of an eye.  I must get sleep.  For me, when I don't get good sleep I'm a crazy woman.  Word picture for you- think: both arms and legs (and rest of body) are in turnicates (and the squeezing your limbs as hard as they can x 1000) and you get an idea of the burning sensation I'm feeling right now OR think inflammed muscles sleeping on a bed of hot coals. Anyway...if anyone happens to be reading this right now, please for for sweet sleep and pain to lessen!  So...I'm back on the sofa...cheers!  Take every thought (and pain) captive!!!! (Thanks, Kristina!)

I'm encouraged!

I do believe HE gave me the answer to my prayer yesterday...a GLIMMER of pain relief today!!!!  PTL...truly!!!!  I just wanted you all to know HE is faithful and I KNOW HE will heal!  I was able to walk outside today 2 different times- only about 30 feet because I didn't want to push it, but the sunshine came out for just a weeeeee bit and I had to get a little bit of vitamin D (yes, mom and dad...I was wearing my hat!).  I have been able to sit up more today without having my head propped up with a pillow.  Now, I have to learn to find a balance with my obsession sunshine and my new "situation" that doesn't allow me to soak up a lot of it due to the nature of the disease...oh, help me!

David went on a little shopping spree today.  I had a really rough night last night because our bed is so uncomfortable.  We've searched and searched for some type of egg-crate thing-ma-jig for our bed since it's like sleeping on hardwood floors. It is no easy task to find items like that here.  David did hunt down a 2 inch piece of foam, but when we put it on the bed ...let's just say that it looked better than it felt.   So...I told my two favorite little monkeys to go jump on the bed to "work out" some of the stiffness!  Well, actually, we took it off the bed and placed it on the floor so the monkeys wouldn't break the bed.  He also bought a hand held food processor today.  If you know David, you know why---SALSA making!  He made his first batch since we've been here.  We're now looking for an IV bag to start our necessary drip : )

Our Father knows exactly what we're going through and when it seems we can't bare much more at the moment.  It's no coincidence that I received such encouragement from family and friends via email, private messages and some awesome songs that filled my heart and mind today.   Two ladies who live in two different countries sent me a link to the same song today.  They obviously had no idea the other was sending this song.   This song is what they both shared...what a blessing!  Thank you, Mary and Nancy.  I think I might be sharing a lot more songs.  That is just one of the many ways He encourages me- especially in dark times.  My mom sent me the following passages today as well...guess what?? SING praises!  Ps 135:3  "Praise the Lord, for the Lord is good; Sing praises to His name, for it is pleasant."  Ps 149:1  "Praise the Lord.  Sing to the Lord a new song."


My ear has filled back up, my throat still hurts, and I'm still weak and in pain today, but I REJOICE in the GLIMMER I was given!!!!

In awe of the One who created this cares about my "glimmer".

Also, I am extremely thankful (and a little jealous!) that this is my hubby's view from his office!

DWELL on things above...

Oh, the last 24 hours have kicked my tail.  My pain has increased, and my heart has just simply been broken to be real honest with you.  As my sister emailed me last night "Jer 29:11 plan STINKS big time right now but it's bigger and we can't see it!"- SO TRUE!  Oh, I know deep, deep in my heart that to be true, but it's been especially difficult to remember that principle the past day.  I need to get back on the saddle (I guess, rather, the motorbike!) and ride!  I HAD to get out yesterday.  I was absolutely going stir crazy in our apartment!  We all four hopped on the motorbike (and I used the term "hopped" VERY loosely in my condition...more like David has to physically place my legs on the foot rests of the bike!) and David and AA drove us (don't ask) to lunch and a short ride downtown.  I feel like such a different person when I'm out in the sunshine and enjoying His creation! And i know I've mentioned this before, but I truly have a new respect for all the Harley Davidson bikers out there...there's just something about riding in the wind!!  If there was ever anyone who was made for outdoors it's ME! Our little jaunt just about did me in due to the effort it takes to hold my body upright with such weak muscles, but it did my soul some good so it was worth it!


Phil 4 says "Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.  Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you"

Counting my blessings:
*I have a doctor here who actually knows my blood counts in her head!
*I have access to Truth and the Great Physician!
*I can start a new day with a new attitude!
*I have a husband who didn't completely freak out on me when I asked him to shave my armpits!
*I have two daughters who have been very compassionate and helped me get dressed each day!
*I have family and a bff back home who are constantly praying for me!
*I had a good cardiologist report on Friday!
*My friend, Ann, brought me yummy banana muffins yesterday and took Abigail on a bike ride with her sweet daughter!

*I have a daughter who lost another tooth this week and the FIRST thing she said was, "Mommy, how much offering can I give?"  WOW...thank you!
*HE never changes!

2nd tooth lost on Thursday!

FIRST tooth lost in December!

Just for today...praying for a glimmer of pain relief and a step in the right direction in my healing.
I can't count how many time I've listened to this song "Be Near" in the past few days...hope you like it, too! (just click on the orange "play" button on the left when link opens up)

Great news, bad news

I was seen by the cardiologist and Dr. Nathalie today.  So the good news first.  "Dr. Heart" said my heart was in good condition and hasn't been affected by this disease.  I was also told that my kidney numbers are good, too...PTL!!  I was so concerned they had been affected due to the horrible pain in my back/kidney area.  I look rather elderly as I walk.  This young teenager stopped me at the clinic and said, "Oh my...are you okay!?!" - yet another realization of how old I'm feeling and looking at this point  < SIGH > ...

The bad news is that my CPK number (the muscle enzyme that has been extremely elevated and triggered this entire thing) is even more elevated than when I was in Bangkok...fooey.  She explained to me that since my CPK is so high my kidneys are having to work like quadruple overtime to process the enzymes.  That made since to me.  Not real sure why it had gone done in Bangkok and it has risen again now, but I'm so thankful treatment has begun.  My CPK is near 8000 and "normal" is around 200...ouch.  It's going to take awhile to get it down, but I'm anxious to see how my Great Physician is going to bring it down even faster!    The other good news is I feel some relief in my ears...yahoo!!!  I know that doesn't sound like a big deal, but trust me...it IS to me!!!

Another sweet friend brought us dinner for tonight.  THANK YOU, Pam!  I'm just so touched how people are reaching out to help and they barely know me.  "Helping" here is so much more of an effort here than in the states.  Nobody has cars to just hop right into and pop over to help.  There's effort and lots of it.  WOW- so grateful!

On another note...as I was reading yesterday I came across the following passage.  I always write dates in my margin when a passage is particularly meaningful to me.  This one said "1-29-11 health"...hmmmm.  Now is says "4-6-11 health".  I have lots of those written in margins!  Anyway, probably doesn't make a lot sense to anyone other than myself, but the same verses so encouraged me yesterday for the health reasons. It's so completely amazing to me that when I was truly sinking yesterday, God encouraged with sending me back to Dr. Nathalie and I felt relief partially due to a "plan" and diagnosis.  THANK YOU!

Psalm 142
"I cry aloud to the LORD;
   I lift up my voice to the LORD for mercy.
 I pour out before him my complaint;
   before him I tell my trouble.
When my spirit grows faint within me,
   it is you who watch over my way...
 I cry to you, LORD;
   I say, “You are my refuge,
   my portion in the land of the living.”
 Listen to my cry,
   for I am in desperate need;
rescue me from those who pursue me,
   for they are too strong for me.
Set me free from my prison,
   that I may praise your name.
Then the righteous will gather about me
   because of your goodness to me."

I think "it" has name

I went to the clinic yesterday due to my insane itching/aching in my ears that will NOT stop.  My wonderful doctor, Dr. Nathalie, who has been so caring and so concerned about me asked me to come back in today since she consulted with yet another doctor...this one in Paris (as in France).  So I shall call this doctor, Dr. Paris.  She had contacted "Dr. Paris" (another rheumatologist) and sent her pics of my bizarro cuticle issue and red rash on my chest and face (I looked like a bright red tomato yesterday!).  After reviewing all my tests and numbers she said that I definitely have dermatomyositis.  I listened in on their conversation (and I was quite intrigued since I don't speak a lick of French).   I just had to chuckle out loud to Dr. Nathalie when she told me that she would be with Dr. Paris in June and they'd have fun discussing my case (again, one of those medical mysteries!).  The Bangkok rheumatologist referred to it as possibly this disease but wasn't committing to that diagnosis at this point.

The reason my cuticles, throat and ears are being affected is that the disease is spreading...not good.  Dr. Paris says that my "numbers" are very high, and I have a very severe case and I need to start treatment asap- which I did just about an hour ago!  Hopefully, it hasn't spread to other organs.  I'm headed back to the clinic tomorrow to have a visit with the cardiologist (Dr. # ?????) and make sure everything is okay there.  More blood was taken today and more will be taken in a week to have a baseline for treatment.

Even though I know this is quite serious and I don't even have an idea if other major organs are affected, I'm thankful I have a plan of treatment (and a long one at that).  Granted the treatment is less than desirable because I know of the possible side effects.   I know I just must continue to place it in the Lord's hands.  He is faithful to guide me through it all. My prayer is that no other organs have been affected and the disease will be contained, and obviously, that I would respond well to treatment without horrible side affects and be healed completely!

On a lighter note.  I'm most grateful for several of my new friends (and David's co-workers).  What a blessing they were today!  David had to leave for his flight prior to my appointment so he arranged our chauffeurs for his girls this afternoon.  Since the road we live on has a huge barricade at the end of it where we typically catch a taxi (AND to call for a taxi to come to our apartment is virtually an impossibility), Matt and Dejan drove us to the clinic.  Then...Chrissy made us dinner and delivered it to the clinic!   THANK YOU...all of you.  Today would have been very difficult without each of you.  We appreciate your willingness to help.  AA was super excited to "drive" Mr. Dejan's motorbike, too.  WHAT have you started???? : )

Psalm 9:10
"Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you."

Psalm 143:1
"O LORD, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief."

The Ugly Cry

So, we've been back home for a week now.  It's been a challenging week.  I have had emotions from extreme amazement of how HE chose to work in a most unusual scenario on Sunday morning to extreme frustration that resulted (more than once!) in tears.  The kind of tears hat we all know as the ugly cry.  The kind of cry that feels totally out of your control, but feels so good when you get it out of your system.  Do you know the cry?  Yep, I thought so!  My poor family....they've been so patient with me and have taken good care of me.  I wish I could say my mind has been totally upbeat and "giving thanks in all circumstances", but it hasn't (at least not at all times).  I guess that makes me human, huh?  So does that scripture mean give thanks 24/7 or does it mean give thanks in whatever situation arises  (but you're bound to be human and feel human responses within "the situation".  I am thankful for MANY things that are happening as a result of "this" situation.  Again, my analytical mind at work-sorry!

I've received several emails asking how I'm physically doing so I thought I'd share my symptoms. I'm going to the doctor again tomorrow- not back to Bangkok, just the local clinic.  I can't seem to shake my ears from hurting.  It feels like I'm losing hearing in my right ear.  My ears continue to itch (the Bangkok docs seem to think it's from my rash on my chest -that hasn't gone away-and it just moved into my ears) and my throat is still not back to normal. My muscular pain level is quite intense- unbearable at times (hence the ugly cry).  It hurts to walk up 4 steps into our loft (living room).  Many times David has to pull me up to get out of the chair/bed.  The ache in my upper back/shoulders has decreased, but the pain is more intense now in my arms and hands (and continues in my quads).  I can't really make a fist without pain (not that I'm going to punch anyone out or anything!).  I developed other weird symptoms while in Bangkok- hard and purplish cuticles on each fingernail- and that hasn't improved either.  It hurts to type for very long and that's why I haven't blogged in about a week.  I think the only part of my body that hasn't been affected are my calves so I'm grateful for that.

On top of all the health issues I'm  TRYING to keep the girls on track with school plus making decisions on school curriculum form next year...oh joy.  It's a tad difficult to decide on all that via the internet.  David will be flying back to the states at the end of the month and I've got a list about 5 miles long of thing that need to return with him (and that list keeps growing!).

Many, many thanks to those here who have offered to bring over meals, take the girls off my hands, send me emails(or songs!) of encouragement, and pray for me.  I feel kinda like a lump on a log right now as I'm temporarily disabled.  Hopefully, it's temporary.

I forgot to upload this pic when we were in Bangkok.  You don't see nurses wearing this kind of uniform much anymore.  In fact, I don't think I've ever seen a nurse wear this except in pictures.

This has nothing to do with this post other than it makes me happy because it's pretty.

This also makes me very happy....and I had one today- the most amazing chocolate tart!  It has just a little bit of coconut at the bottom- yummo!

This makes me even more happy...two sweet angels who fell slseep in our "crib" (that's what we call the 2 chairs when we squish them together).

Again, this has nothing to do with this post other than these 2 girlies make me happy....the towel elephant made us smile, too.

 So, I'm trying to "give thanks"....    : )