December 23, 2009

REJOICE, THANK, PRAISE


yesterday was our follow-up appointment at Children's Hospital.

at best, it was incredibly disappointing.
the "thorough followup investigation" that we were told would take place when parker was hospitalized last weekend did not happen. we saw the same doctor that we saw at his prior appointment and she knew nothing of his hospitalization!
his chart did not even contain the results of all the testing that was done while he was in hospital dec11-12. the doctor had to pull them off the hospitals records system herself.

very quickly, it became clear to us that the promised meeting with a team of doctors that would consult about parker's case had not happened... nor will it. rather parker's condition was treated with what we perceived to be a dismissive, nonchalant, cold and uncaring attitude...
and he was given a 'diagnosis' of Idiopathic Pain Syndrome.
idiopathic means the cause (of the pain) is of unknown origin.
we were told by the doctor that basically some unknown entity is causing parker's symptoms. it has triggered a pain response in his body that his brain is not able to shut off. kind of like not being able to turn off a screeching car alarm was the analogy used by the doctor.

in spite of parker's blood work being abnormal (low RBCs, high WBCs, whacked igE antibodies)
there was an abrupt and total refusal to do further testing or investigation into uncovering what is the cause of his "idiopathic pain" and his other symptoms (headaches, fatigue, shortness of breath...etc)..

our appointment ended with a referral to a pain management specialist....rather than trying to figure out what triggered the alarm in the first place, it appears it is easier to pass him off to a doctor who can prescribe "ear plugs" so that he can learn to live with the racket.


and the result of that Canadian lyme screening test (a.k.a. the Elisa) that i was praying like crazy would render a positive? well, it did not.
and our provinical lab refused to do the more sensitive secondary testing (called the Western Blot).

oh, how i yearned for a different outcome to this appointment... i felt i needed that canadian test result to be positive in order to have some sort of believable and definitive diagnosis of lyme - to confirm Dr. H's suspicion, and ours. i guess a part of me hoped that the paper proof of a positive result here would lead to an acknowledgment from our Canadian specialists.

from a human perspective, once again we have been left with the feeling that lyme is a four-letter curse word in the medical system here - it is the pink elephant in the room, the hot potato that gets tossed around because no one wants to handle it.


i will say this...i left yesterday's appointment incredibly upset, fed up, frustrated, confused, hurt, crushed, perplexed, and rip roaring mad and spitting angry...at the doctor, at this stupid disease, at this whole sordid journey called lyme and... at God.


while i need to vent my angst, i do not wish to pollute this post with nor dwell on these emotions. acknowledge, yes.
dwell on, no way!
i have not remained there. nor do i wish for those that are walking this journey with us (YOU!) to either. God is in control. He is bigger than this.
i know God understands my anger and can handle it... but to me, i attribute my anger to a lack of trust on my part...and that does not sit well with me.

upon returning from the hospital, i posted on my FB status, that i needed folks to pray as i needed some heavenly perspective.

be careful what you ask for...


after posting that, i opened my bible... this was the first thing i read,

"to sum up, let all be harmonious, sympathetic, brotherly, kindhearted and humble in spirit; not returning evil for evil, or insult for insult, but giving a blessing instead." 1 pet 3:8-9

and the next verse i read?

"be joyful always, pray continually, give thanks in ALL circumstances."

Lord, you have got to be kidding me! that is the LAST thing that i want to do!

i read on in my devotional for the day,

"i especially want to thank you for what you plan to do through the things that disappoint me, upset me, make me anxious or break my heart. thank you for your ultimate good purposes in allowing these things."

rejoice?
thank?
praise?

i was pretty much at the extreme opposite end of that emotional spectrum! rejoicing, thanking and praising for this is the last thing i want to do.
but no matter how justifiable my reasons for not, how can i refuse to rejoice, thank and praise?

my devotional went on to say,

"my heart rejoices in You, Lord, for You are my strong shelter in times of trouble and danger and stress, my hiding place to whom i may continually resort, my father who lovingly provides for me, my shepherd who guides and protects me, my champion who upholds my cause as His child and defends my highest interests." (31 days of praise)



i read on in the Bible,

"do you see what we've got? an unshakable Kingdom! And do you see how thankful we must be? Not only thankful but brimming with worship, deeply reverent before God. For God is not an indifferent bystander. " Heb 12:28-29

listen here to this song, HOW MANY KINGS... reflect and celebrate!!


"God can pour on the blessings in astonishing ways so that you are ready for anything and everything, more than just ready to do what needs to be done...He throws caution to the winds, giving to the needy in reckless abandon. His right-living, right-giving ways never wear out or run out." 2 cor 9:8-10

we have been riding a huge tidal wave of blessing poured out by God himself through his people . He is pouring out His blessings on us in the midst of this pain and suffering. And most importantly let me not forget the reason for this season.
over the next couple of days, we will be celebrating the birth of Jesus. if i hang on to anger, i will allow it to overshadow the miracle of His birth, the redemption of His death and the hope that is found in His resurrection.

i choose to
Rejoice, Thank, and Praise - BLESSED BE HIS NAME

May you to find the Blessing of this season falling fresh on you.
Merry Christmas!


“It is written,
Rejoice with His people!

And yet again,
Praise the Lord,
Praise Him, all you people of the earth.

And in another place Isaiah said,

The heir to David’s throne will come,
and he will rule over the Gentiles.
They will place their hope on him.

I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit."

rom 15:10-13



December 21, 2009

OUR SENBAZURU

behold this incredible gift that parker's class made for our family:


Our Senbazuru

A Senbazuru is made up of 1001 origami cranes. All 1001 cranes were painstakingly folded and crafted by parker's classmates and teachers as a gift for our family. each crane they made holds their wishes for parker to have a speedy recovery. AMAZING! what an incredibly beautiful display of support.




An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane; such as long life or recovery from illness or injury. In Japan, the crane is one of the mystical creatures and is said to live for a thousand years. In Asia, it is commonly said that folding 1000 paper origami cranes makes a person's wish come true. Hanging a Senbazuru in one's home is thought to be a powerfully lucky and benevolent charm. The last crane, the 1001st, is meant to be for extra good luck, to make sure that our wish come true.


Thank you students of Division 5 and to parker's teachers, Mrs S and Mrs B for this incredible gift. we are honored by your thoughtfulness, astounded by the sheer magnitude of time and energy that went into creating this and humbled by your support, care, concern and cheer leading. our Senbazuru now hangs in a place of honor in the center of our home - right above my 'convalescing couch' which is adjoins our kitchen - the heart of our home.


thank you - you have profoundly touched our hearts.


December 20, 2009

SPEECHLESS GRATITUDE


speechless gratitude.
what more can i say?
so much more... yet i find myself unable to articulate our family's gratitude or find the right words to express it.
we are incredibly grateful and appreciative beyond measure for the generosity of so many. to be the recipients of such generosity is a wonderfully amazing yet uncomfortably humbling place to be.

we are humbled,
shocked,
amazed,
bewildered,
excited,
grateful,
exuberant,
humbled,
and pretty much rendered completely speechless by the outpouring of support and kindness that has been gifted to us by
our community, both friends and strangers alike...not to mention secret santas, Christmas angels and a few silly elves thrown in to the mix.

last week, we were blown away to be the recipients of some pretty amazing blessings - heartfelt gifts, food - lots of food (enough to feed a small army for the next 6 months!), even a costco size box of kleenex! (all of which has been needed to mop up my overflowing waterworks) on top of that, and astonishing to us, we received a donation of funds to help us with our ever mounting medical bills. this spear headed by parker and avery's teachers and raised by the faculty, the students and their families. speechless gratitude.

even taylor has been caught rifling through the gifts...this is a kid, whom from a toddler til present, could be trusted to not peek - so much so that i could leave unwrapped gifts hidden under a towel in my closet and not worry about him sneaking a peek...and now at 17, i caught him rifling through a bag of gifts, exclaiming over them with bewildered wonder and absolute delight. wow. speechless gratitude.

parker is at the age where one begins to question whether or not santa is real. naturally trying to explain to him how or why santa already delivered us our presents the week before Christmas proved to be ah, somewhat challenging. his questioning granted him a flustered and vague explanation from yours truly, "oh, well, i don't know why. dad just got a call and was told that santa had presents for us."

"really? did dad see santa or any elves?" came his skeptical query.

i tried to maintain some level of decorum while sweating bullets as i struggled to give him an answer that would not rob him of his loosely held santa belief but would also impress upon him the reality of the bigger picture here. how does one do that? how does one explain that the magic of santa is really the wonder and miracle of God blessing us through others?

finally, i just blurted out, "well, buddy, i think santa had a whole lot of help from God this year."

with eyes as big as saucers and wonder twinkling from his eyes, he reverently whispered, "wow! is santa a christian, mom?"

as i wiped my brow and wanly smiled in response, all i could think was how relieved i was that avery has not clued in to the fact that santa showed up early this year! ah, speechless gratitude!


so thank you, thank you, thank you to our community - the McNeely school faculty and families, the secret santas, the silly elves, and our Christmas angels. the gifts. the food. the snacks. the thoughtfulness, time, creative energy and care behind all of it has left us all profoundly humbled, completely overwhelmed and speechless with wonder.

we have always known that Christmas goes way beyond the gifts under our tree. along with the jubilant celebration of Jesus' birth and the eternal hope found in it, we are also blessed with a new hope - a sense of genuine community, love, support, care and concern...and the willingness of so many to come alongside us and walk this journey with us.

thank you to each of you who have kept the magic of Christmas alive for our kids. more than preserving the wonder of them getting their Christmas wishes granted, you have given so much more! you have imparted to them those qualities which are of lasting value - the gift of knowing that they are surrounded by a community of people who care and love them.

and that is a gift they will carry with them forever...



December 18, 2009

EXTREME WEATHER WARNING


EXTREME WEATHER WARNING IN EFFECT:

please be advised that a flood warning has been issued for the city of Richmond. The weather system, aptly named "Sobbing Shannon" moved in earlier this week. it rapidly built in intensity this morning, is continuing to build and shows no signs of drying up anytime soon. Some special Secret Santas and a few elves and the McNeely School faculty, students and their families have been isolated as the cause of origin for this unexpected overflow of precipitation.

stay tuned to this network as we follow this cleansing storm front. yes, untold blessings of great proportion have rained down on us here this week. untold blessings that will be told...just as soon "Sobbing Shannon" has sopped herself up and absorbed it all.
quite frankly, it will be a challenge to adequately express or articulate the avalanche of emotion held within the heart of this sobbing storm.

until that happens, all "Sobbing Shannon" can blubber is a humble "THANK YOU" and send out heartfelt showers of gratitude and thankfulness for the overwhelming support and outpouring of generosity of so many.



December 17, 2009

FLUFFY-FLUFFY SHOOTS UP


dear makers of the monoject ultra comfort syringes;

just wanted to let you know that labeling your product with the word "comfort" is misleading.
there is nothing 'comfortable', nor remotely 'ultra comfortable' about jabbing a 2 inch needle into your gut. of course, silly me, maybe your label was not meant to be taken literally. possibly your intent in naming your product "ultra comfort" is an attempt to psychologically woo the consumer with the power of suggestion.

whatever the reason, the reality is that i did not experience any level of comfort while using your product. i feel duped.
i can appreciate mind over matter in some instances. but in this circumstance, is it really helpful or necessary to lure the consumer into a false sense of bravado? after all, your ultra comfort product is a sharp metal object that is impaled into soft, delicate and nerve rich flesh. and that, by physiological nature, is and will always be painful...no matter what psycho babble you sugar coat it with.

i suggest you give the guys at Buckley's a ring - they seem to know a thing or two about the truth in advertising.

sincerely
fluffy-fluffy



fluffy-fluffy's jelly belly has now endured 3 self inflicted injections. it is a rather curious thing to stick yourself with a needle. really, all in all, it is not so bad. however, fluffy-fluffy definately needs to work on consistency with her technique.
the first injection, she hurt herself and drew blood... before even opening the needle.
the second injection hurt very little but bled a lot.
the third hurt a lot but bled very little.

at least, fluffy-fluffy does not have to suffer alone.
she can always count on having an audience for her injections.
avery has a thing for needles.
always has...


treating LD is hard on the body. for this reason,
i have had weekly blood tests done to monitor my old bod and organs.
2.5 years of weekly lab visits have made the place feel like a second home. avery has been 'accompanying' me since the beginning. now, that she is in full time school it is a little trickier to have her accompany me. she is terribly annoyed with me if i go with out her.




she eagerly anticipates these little outings. go figure. she has a whole routine - she settles herself in beside me and incessantly chats with the nurses while she gets out her snack.
yes. snack.



she insists on eating her snack precisely at the moment they insert the needle.
snack and watch. snack and watch.
she has been doing this since she was 3. as you can imagine,
she is over the moon now that i am injecting at home every other day. she is fascinated by it and insists on watching. actually, she has absolutely forbidden me to inject without her present.

weird kid.
but what do you expect from a kid whose mother refers to herself as fluffy-fluffy.

the results of the injections, aside from aforementioned bloodshed, is that fluffy-fluffy is a little less puffy. the jury is out on whether or not the associated deflation is because the medication is actually working....or more to do with the fact that fluffy-fluffy has sprung a leak now that she resembles a human pin cushion.

time will tell.


December 15, 2009

SOMEWHERE IN SAN FRAN...

some where in san fran another fluffy-fluffy exists...
and
we found the hairball that proves it.



hairball sighting in a parking lot by the Golden Gate Bridge.
yes,
it is really, really, really gross that we would photograph it.
i totally agree.

but, if you can stomach it,
think about it for just a minute.

what are the chances of finding a hairball in some random parking lot?
only in our world would that happen.
which made this an event that was far too ironic for us to not document.


i've recently learned about a slue of new readers to my blog. visitors from my immediate community are reading my blog. i must admit, i am somewhat chagrined to find out who all knows about fluffy-fluffy and her hairballs.

i suppose my semi-embarrassment over this is the reason behind this post. somehow i feel the need to "out" another fluffy-fluffy. after all, our photo is proof that I'm not the only one in the world with hairball issues - i just happen to be the only one to tell the world about it!

so, would the fluffy-fluffy in San Fran please stand up...and take a bow?

be proud fluffy-fluffy's of the world
hairballs unite.



December 12, 2009

HOME

we are home.
finally.


i brought avery with me this morning
so she could cuddle her "brodder pawkur"

parker is doing significantly better. thank you so much for your prayers and support. i am too tired to respond to each of you but please know that your messages of love and care are an incredible encouragement to us. i have shared all of them with parker.




parker was seen by 4 different doctors while in hospital. they really don't know what is going on with him - but they were all compassionate and concerned. that was nice. they did and are doing a ton more blood work - retesting him for all the stuff they've already tested him for and they are testing him for mycoplasma (this is one of the infections DR H wanted checked out)

lyme was brought up several times by 3 of the doctors. the rheumatology report they have from our appointment in november mentions that i have lyme. naturally they nearly interrogated me about it, asking repeatedly if i have serological evidence to back up my diagnosis. as usual there was this weird level of tension in the room whenever lyme was brought up - which is why we chose to keep our out of country trip private...however doc #4 actually suggested the possibility of parker having an 'atypical' case of lyme.
he said that he wanted to run another Lyme Elisa and would talk to the provincial lab and see if they would run the more sensitive Lyme Western Blot.

neither one of these tests are remotely reliable BUT...you just never know....miracles can happen. and that is what we need. getting our working lyme diagnosis backed up by canadian serology/blood test would be a miracle. we need a Christmas miracle. Please pray for this.


all test results will take about a week to come back. Doc #4 said they would be pulling together a team to look at all the results in the hopes that they can figure this out. we have an appointment to go back Dec 22 to go over any findings/results.

hospital

parker is being kept in children's hospital overnite ....

we are back home in canada...we flew in from sf this eve...home for a mere 2 hours before we had to take parker to hospital.we took him in b/c he was in so much pain and drugs he is on were giving him no relief so we took him to hospital hoping that we could get something to help manage his pain better.

er docs have decided to keep him overnite. he'll be seen (again) by rheumatology in morn. feeling like that won't really resutl in anything...but er doc was receptive to suggestion of lyme and said he would order elisa AND the western blot...pls keep us in your prayers. parker just needs some relief. graham has stayed in hospital with him - i'm home to sleep for an hour or two (yah right) and be with avery and taylor (who are sleeping). will head back to hosptial shortly.

urgent

parker has taken a turn for the worse
on our way to hospital
pls pray

December 11, 2009

FLUFFY-FLUFFY DRIVES DR H CRAZY

Fluffy-Fluffy aka Sandeep aka Shannon had an appointment with DR H yesterday. Naturally, the topic at the top of the list to discuss was Fluffy-Fluffy's fluffiness. DR H wanted to know how her jelly belly has been since she bitterly removed her navel ring.

she begrudgingly admitted that the swelling in her belly has significantly gone down.

DR H smiled smugly and reminded her how right he was about that. then he made some cheeky comment about how he just " hates having to tell patients what to wear."

"oh brother" came Fluffy-Fluffy's sarcastic but weak retort.

"
aw shucks, i'm so sorry i was so right about that." DR H cheekily grinned.

psshhht! Fluffy-Fluffy half expected him to start pumping the air with his fist and yelling, "I was right. I was right!"

Fluffy-Fluffy gave DR H his little moment and then she struck back, "LOOK AT ME! my face is ENORMOUS! and i'm stuck wearing stretch pants! I am puffy and fluffy. Sure, my stomach has shrunk...but that is just because it headed north and south...and drained into both sets of my cheeks!"


yes, it is true, confirmed upon exam, Fluffy-Fluffy has once again blown up. Her face has puffed up and so has her, ahem, lower half. ultrasounds and blood test have revealed her kidneys and spleen are swollen and under duress due to the overload of bunged up stagnant lymph fluid trapped in her body. trying to figure out what to do with Fluffy-Fluffy's fluffiness nearly drove DR H crazy!

he sat there in his chair perplexed, repeatedly running his hands through his hair and grimacing. intermittently he would tap his head with his pen and heave and sigh. when that rendered no solution, he began ferociously chomping on his pen, shifting his feet to and fro and staring hard at Fluffy-Fluffy. and then he got THAT look. that crazed, 'i know what i'm going to do with you and you are probably not going to like it' look. then he got up and started chasing Fluffy-Fluffy around the office with a needle.



note DR H's shoes.
he is known for his interesting choice of footwear.
yesterday he was wearing hiking boots.

Fluffy-Fluffy almost expected and hoped that the needle poke to deflate her (she had visions of her screeching across the room in the same looped-a- loop fashion that a deflating balloon travels.) but she didn't. unfortunately, the results aren't that instantaneous. DR H taught Fluffy-Fluffy how to self inject the meds for her lymphatics. she's gonna have to do it every other day for the next 2 months (at least)

wow. fluffy fluffy is so not impressed.
this had better work

maybe on good faith, she will buy DR H a t-shirt that says, "I WAS RIGHT!"


December 10, 2009

POSTCARDS FROM PARKER #3

This is me in DR H's chair. It's okay...but I'd like it better if it had wheels.


HI
It's Parker... Again.

Yesterday, we went to Dr H's office where my DAD kind of turned into a rooster.



While we were waiting to see DR H, me and my dad made a uh uh... made something out of GIANT lego. (Oh Avery no princess castle but the nurses at DR H's gave me cake and cookies!! ha ha ha)



After my appointment with Dr H, he chased Fluffy Fluffy (my mom) with a needle around all of San Fran (just kidding - but Dr H did give my mom a needle. Gross, I couldn't watch it! My mom had to learn how to do it because she has to start giving needles to herself every 2 days.) After that, my dad got me a slushee (American slushees are gross!) Then we went back the hotel and stayed put. We were so tired because we were at DR H's office for over four hours!

So, this morning, my mom made me do homework again. :(


This afternoon we visited my mom and dad's friends from Richmond. Their daughter has lyme and they have to live in San Fran right now so that DR H can treat her. After we went to a place called Half Moon Bay for pizza. They have the best pizza ever there!



Unfortunately... I didn't feel so well. My joints hurt really bad and I had a hard time breathing and I felt really nauseous. so the pizza came but I couldn't eat it. I just had to lie down in the restaurant. My parents got the pizza to go when that happened so I'll be able to have my pizza for lunch for tomorrow. When we got back to the hotel I started blogging.

Tomorrow we have to go to a special lab so I can have some more tests done. After that, we will be flying home.
I hope to see you all at school on Monday afternoon.

Bye for now,
PARKER :)


December 9, 2009

HE IS NOT SHAKEN

today was our appointment with DR H. we were at his office for 4 hours. our appointments with him ran more than 2 hours. it was a long and exhausting day.


parker posing in DR H's infamous chair

the outcome?

obviously, DR H should no better than to leave us in his office unattended.


and the diagnosis?
definitely not a viral infection
definitely a bacterial/parasitical infection

most likely parker has lyme and babesia
DR H will begin treating him with doxy and zithromax
. DR H said the doxy should help to alleviate some of his joint inflammation and pain.
treatment will take 9 to 15 months or longer
but
kids with lyme can be cured!

however
before rendering a definitive diagnosis of lyme, DR H is testing him for several other bacterial infections that could also be the cause his symptoms. they are chlamydophilia pneumoniae, klebsiella pneumoniae, streptolysin, and mycoplasma fermentis/pneumoniae/hominus. we are hoping that we will be able to have all of these tests done in canada (which would mean they'd be covered by our medical.)

DR H has also ordered a blood test for babesia and an Lyme dot-blot antigen assay (LDA). the LDA is a specialized test for lyme. it is different than the lyme blood test that he had done in october. that one tested the blood for antibodies. the LDA will test for DNA evidence of the actual lyme spirochete. it is a urine capture test that is done over a 7 day period. during 5 of those days, parker will be aggressively treated with 3 different meds in order to try and provoke his body into making an immune response. this test, along with the babesia test, need to be done through a specialty lab down here in SF. they are not covered by our medical or insurance.

so, no
definitive diagnosis of yet...ack! i know!...and more test results to wait for!

we are grateful that DR H is looking at the whole picture. he is thorough, unbelievably knowledgeable and totally 'microbe savvy'. one of the things we have often appreciated about him is that he is never quick to blame all symptoms on lyme and/or coinfections. ( my hairballs are a most recent example! i blamed babesia and he said no. he was right - and he was right about my navel ring too-- which, btw, he repeatedly rubbed in my face today!)
at the same time, this process is
frustrating and difficult and we wonder why, why, why must a conclusive answer remain elusive.

the past 3 and half years have been tough, tough, tough. the pain and the stress of the past couple of months have felt surreal and have been nearly unbearable. it has left our family shaken to our core.
we are all struggling to cope with my continued fight and process parker's illness. some days all of it comes crashing down on us and emotional chaos reigns over our home. my greatest fear is that this roller coaster we ride will rattle my kid's faith. that all the anger, pain and confusion they are feeling will be focused AT God rather than given and trusted to Him. that would be the greatest tragedy in all of this...far beyond the pain and suffering we have endured thus far on this journey...and far beyond this 'kinda, sorta, maybe' diagnosis we now face.

this fear has weighed heavily on me over the past couple weeks. i am so thankful that God, in his grace and mercy, gave me a verse to hold on to.

2Thus says the Lord, Who made you and formed you from the womb,
Who will help you: Fear not,
3For I will pour water upon him who is thirsty, and floods upon the dry ground. I will pour My Spirit upon your offspring, and My blessing upon your descendants.A)">(A)
4And they shall spring up among the grass like willows or poplars by the watercourses.

5One will say, I am the Lord's;
and another will call himself by the name of Jacob;
and another will write [even brand or tattoo] (yes it really says that!) upon his hand, I am the Lord's, and surname himself by the [honorable] name of Israel.

~ isaiah 44:2-5 (AMP)


God is faithful. He is right here beside us. and we won't let go because He is not shaken by what is happening to us.

allow us to share with you the song "You are not shaken" along with some snapshots of our journey with lyme thus far...



video

December 8, 2009

POSTCARDS FROM PARKER #2

Hi again

Today, we rested and stayed at our hotel until 2pm. Then we drove to San Francisco. First we went to the Golden Gate bridge. We drove across it then we walked half way across then back. well, I rolled across it.


We went to a place called Rodeo Cove.



It had the biggest waves I have ever seen!



After we went to Fisherman's Wharf. There was a candy shop and we got all kinds of salt water taffy. We saw sea lions keeping their cub warm. Of course, my mom said it was so cute! After we spent about an hour looking for a restaurant called Max's but our GPS unit (we call him Mortimer) kept on taking us somewhere else :( . We nearly starved to death because of Mortimer.
FINALLY at Max's - no thanks to Mortimer!


Bye for now,
Parker

SIGHT SEEING


today, we saw more of SF than we ever have before. actually we have only ever even made it in to see the city of san fran on one trip (ironically, our first) and then almost all of it was experienced through the windows of the car.



today was different. i was well enough to be able to experience the sights and sounds of san fran with parker. as we were driving over the golden gate bridge, graham suggested we get out and walk across it...

"hokey dinah! you have got to be kidding me! NO WAY!" the fear inside me screamed.



even driving over that bridge makes my stomach flip-flop. so the mere thought of walking on it, alongside the very, very short railing that seperates me from the great deep blue yonder way, way, way below. forgeddabout it!! - i can't even begin to explain how grossly that unnerves me. however one of the gifts that lyme has given me is to be concious of not letting fear be the reason behind not doing something. i have spent way too many weeks and months over the past 3 and half years confined to bed or house and unable to do even simple tasks - let alone experience and live life. so now, if i am able, than i will do it.
so with stomach churning and pulse racing like a car on the track at the indy 500, i walked to the middle of the bridge.


after leaving the bridge behind, we took a wrong turn, and mistakenly happened upon a little beach - with one of the most amazing surf breaks we have ever experienced.


our short walk on the beach really excerbated parker's pain level, so we headed in to Sausalito to rest and warm up with a cup of coffee.
once we were appropriately boosted by the caffeine, we set out for a little tour of fisherman's wharf and pier 39.

The amazing Christmas Tree at Pier 39


i really needed today. as i reflect on it, and contemplate tomorrow's appointment, i am so grateful for our little sight seeing tour. so much of this journey has been based on faith - that is, believing in what cannot be seen. believing that i am beating this disease when so often it has appeared that the disease was winning. believing in God's promise of healing in the face of being diagnosed with a disease at it's 'incurable' stage.

today, i saw a whole lot more than just the sights and sounds of san fran.



"faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see."
~ heb 11:1




December 7, 2009

POSTCARDS FROM PARKER #1


please welcome parker as he makes his first foray into the world of blogging. we are thrilled that both his and avery's teachers and classes expressed an interest in following our journey this week. parker will be posting his 'postcards' as he is able.

and now without further ado...i give you the man of the hour!


HI
It's Parker, we flew in from Bellingham, Washington to Oakland, California. On the airplane, we got to see the cockpit and the pilot. My mom said the pilot looked like he was 12 years old.




The flight wasn't very long it was about 1hour and 30 minutes. The sights were really cool! When we got there we rented a car (It's a blue Dodge charger). I wanted to rent a Camaro. My parents just laughed. HaHa...NOT!


We drove from Oakland to our hotel in South San Francisco. We had to cross the Bay Bridge to get there. You have to pay money (called a 'toll) to cross the bridge. I was glad we could go to our hotel right away because I was super tired and needed to have a long rest.

In the evening, we drove to Redwood City. That is where DR H's office is.


Then we went for Mexican food it was really yummy. I had a taco salad and it didn't look like a kid's meal because it was so huge! After we went for a walk around Redwood city


My mom said everything was "CUTE" because there was a lot of trees decorated for Christmas. Then we went back to the hotel.


enough with saying "cute" mom!



Bye for now,
Parker

THE SECURITY BREACH

hello.
meet the goertzens


graham, parker, and Sandeep Gurjit?


this morning, i made it through customs, security and all the way to the boarding gate...with the wrong boarding pass...apparently i look like a Sandeep Gurjit.

Dear Sandeep,

i'm sorry for stealing your identity. it wasn't intentional. it was a terrible error on the ticket agents part. sure, maybe i should have noticed my boarding pass wasn't mine. but i have lyme. it makes my brain pretty foggy. it is not shocking for me to forget who i am. of course, what is shocking, is that the ticket agent, customs agent and security guards all missed it too. maybe they have lyme too.

Sincerely,
Shannon what's my name again?

seriously, how could this happen, especially in this day and age of tightened airport security? on top of that, we travel with so many carry on liquid meds and medical supplies that we NEVER pass through security without extra scrutiny and attention. that my boarding pass and passport were at odds is yes, rather funny but also rather alarming... but should it surprise me? trouble seems to follow me (just ask my old co-workers - they will certainly confirm that there was always bound to be some mishap on my work shifts.)

after my identity was sorted out (personally i liked the new name and was somewhat reticent to give it back... but i demurely complied as i figured it was probably best not to add to the drama), the rest of our flight went smoothly.



we boarded first and were seated at the front of the plane to accommodate sparky's mobility issues. this meant that we were front row and center as the other passengers filed by. naturally, that meant graham felt the need to entertain them all with absurd airline humor. naturally, i can't remember any of his cracks but i can confirm that he did garner many laughs - and a few alarmed looks.

the rest of our day went smoothly and without incident.
we were able to check into our hotel early which was a needed bonus after a long travel day.


meanwhile, back home they experienced their own security breach today...

i received the following message from Taylor:



walter warkentin makes another break for freedom


"i'm going to get an advil from downstairs because i have a killer headache...and i hear rustling paper. so i'm thinking someone is in the house and i'm preparing to beat the snot out of the trespasser. so i round the corner, ready to pounce and there is NO ONE there - but i can still hear the rustling. so i check Walter's cage and lo and behold, he got out! but only to have his escape thwarted by a paper bag that was under his cage that he FELL INTO and couldn't get out of. FAIL ESCAPE!


December 6, 2009

GOD'S GUIDING HAND


i have a friend who has a special gift for picking out the best cards ever. the verse and poem in this posting were in a card i received from her last week. it sure reflects the feelings we have experienced as we traveled the diagnosis roller coaster with parker over these past 3 months:

we ask, "WHY?" and find no reasons.
we ask, "HOW?" and find no solutions.
we ask, "WHERE" and find no direction.

yet, with eyes of faith,
we can see the light of God~
breaking through the darkness,
guiding our way,
renewing our hope
day by day


today (sunday) we will embark on our journey to San Fran. (we're staying overnight in Bellingham, WA and flying out of Bellingham airport early monday morning). there is much emotion attached to this trip. it is difficult to adequately articulate the plethora of emotions washing over me. it is hard to believe that this is a visit necessitated by the illness of one of our children. i remember well our very first trip to SF (dubbed the Lyme Life Flight) and all the apprehension and anxiety that accompanied it; the overwhelming sense of disbelief we felt over the fact that we really had to leave Canada for medical treatment; we worried about navigating through a foreign land and wondered how we would ever pay for it all. so much was unknown yet we felt God's guiding hand upon us and knew we could trust Him with the details.



the 'traditional' border line up photo.
who is that turkey in the back?

that we must now make this trip because one of our children is possibly ill with LD is unfathomable. as we sojourn forth, much of the emotion from our first trip is being relived... along with the tumult of conflicting emotions we feel as we are at odds with what we fear more - finally having a diagnosis or leaving here with none.


however, i know that God goes before us... just as he did before.
we can trust him to guide and direct us this time around too.

"but i'll take the hand of those who don't know the way,
who can't see where they are going.
I'll be a personal guide to them,
directing them though unknown country.
i'll be right there to show them which roads to take,
make sure they don't fall into the ditch.
these are the things i'll be doing for them -
sticking with them not leaving them for a minute."
~ isaiah 42:15-18




December 3, 2009

DJ MOM SHUFFLES THE RECORDS


today both parker and i had long appointments with DR A . he is the canadian doctor who is working in tandem with DR H to monitor my treatment and provide hands on care in between my appointments with DR H.

i met with DR A to go over the results of a recent ultrasound i had.
apparently my spleen is rather swollen. i've also had a flare up in pretty severe kidney pain - and have been passing blood again. i had labs done today to check on my kidney function. we will have left for SF to see DR H by the time those results are in - so DR A will be faxing them to DR H. guess he'll have to contend with my kidneys and spleen. lucky doc. all in all, i think my old bod is doing remarkably well given all the duress and stress it is under.

and now on to parker's appointment...

when parker's symptoms started looking suspiciously lyme-like we phoned DR A's office and asked if he would take on parker as a new patient. much to our relief, he agreed. so a couple of weeks ago, we had parker's medical records transferred from our long time family doctor's office to DR A's office.

today, we discussed parker's suspicious lyme test results and his symptoms. we also discussed the possibility of parker having some sort of Post Viral Syndrome. it is possible but DR A said that a PVS usually resolves within a month or so. on Dec 7, parker will have been sick for 3 months and his symptoms are not only not resolving, they are getting worse. he experienced his worst joint pain ever this week - despite being on prescription pain meds twice daily and tylenol every 4 hours. additionally, we talked about whether mold or allergens could be causing his symptoms. DR A said that is highly unlikely - but " you can never say never in medicine. the body's immune response is complex and can do weird things. there are so many variables in medicine and it is not an exact science." (isn't he wonderful to acknowledge that fact!)

the outcome of today's appointment is that DR A agrees that parker's symptoms are suspicious for lyme. he believes that further evaluation at this point is wise and necessary. he is completely supportive of us taking parker to see DR H. i am grateful for his support.
parker and i left his office with a file folder full of important medical information and history to give to DR H when we see him next week (dec 9).

i do not know if DR A will be willing to treat parker for lyme if that ends up being the diagnosis. i didn't quite have the courage to come right out and ask him that today. in the past, we've asked him to take on one or two other lyme patients that we know. he has always declined. we know that this has been difficult for him - and it is not what he wants. unfortunately, his hands are literally tied. the canadian medical licensing boards give doctors that treat lyme a really hard time. DR A feels he can fly under the radar with one patient...but two may be pushing it. to the point, that it could end up jeopardizing his practice and his care of my case. yes, the medical furor and backlash over treating chronic lyme is that hostile and intense.

but
DR A is lyme friendly
and
our old family doctor is not.
so that is a start.

in the meantime, DJ mom is glad she shuffled the records.





December 1, 2009

THE K.I.S.S. CHRISTMAS

i'm sure most folks are familiar with the K.I.S.S. principle.

K.eep I.t S.imple S.tupid

this is not a principle i have ever applied to Christmas decor. simple? forget it! not even on my radar. overkill? that's more like it! every and any plausible and even implausible surface in our home is adorned... mainly bedecked in a plethora of feathers and fowl.




for the first time ever, i'd rather just "ditto" Christmas. graham is literally pirouetting through the barren landscape of our simplified home. not sure why he is so delighted - oh, that's right. he's not being forced to live in a "chicken coop" this year.



this was the first time in 3 years that i was able to decorate our christmas tree. this is a huge accomplishment! the past couple of years, friends have done it for me. part of me feels sad that i am not in a more celebratory mood about this. after all, that shining tree is a salute to the progress i have made on this long road to recovery i am on. i should be joyful...however my usual exuberance and enthusiasm is lacking. i do not have the energy to summon it forth.

i don't have a bah-humbug bad attitude. no not at all. i am just physically and emotionally drained. i am sad that i don't have the heart to see all things bedecked. truth be told, this year the thought of festooned fowl and glittery feathers prettily strewn about turns my stomach. the thought of looking at and living in all that glorious downy fluff has me feeling like flying the coop rather than nesting.


even my poor crows are experiencing a shut-out like none experienced before.
not sure they'll recover from this shocking turn of events.

the crows were not impressed to find their rightful perch on the kid's Christmas tree
usurped by half-naked teddy bears.
they gathered round, surmising the abomination and planning their revenge.




their plan for revenge was brought up short when,
to their great shock and dismay,
they discovered no place of honor had been saved for them on the designer Christmas tree either. they stupidly stood gawking in stunned silence.
the glory of the home and they were not part of it? surely there must be some mistake
?



the crows could not believe their misfortune.
they were completely miffed to be shut out from every tree in sight.
"this is a Christmas that will go down in history."
they bitterly huffed with contempt.


yes, my dear birds, this is the Christmas of K.I.S.S

i need simplicity this year...life feels so complicated and crowded and topsy-turvy.

i need space to just breathe.
(listen to BREATH OF HEAVEN)



above all, i need to focus on JOY


J esus
O thers
Y ou


after all, choosing to have true JOY is the key to a simple yet fulfilling life.