PRAYING THRU THE ABYSS

"Thank you that i am part of a vast army of people who live in full faced touch with your son and move your mighty hand to bring about your gracious purposes. thank you that our influence and our victories are not by human might or power but by your spirit."
(31 Days of Praise - Ruth Myers)

i am grateful for the prayers of so many.

they were definately felt on tuesday when i went for my mri. it was a long and difficult day but i also recongnize that it could have been a lot worse.

i've had several folks touch base wiwth me this week to let me know that they have committed to praying for our family everyday. i cannot even begin to express how encouraging i have found this. i am amazed to still have people willing to stand with us through this nightmare.

this has been a tough week. REALLY, REALLY HARD. at times, this journey is so beyond difficult. and overwhelming. and painful. and lonely.
incredibly lonely.

so it is good to know there are people earnestly praying.

it is comforting to hear that.

in the last 36 hours there has been some improvement with my mobility issues and air hunger, but other issues are arising...and they have caused great concern

it is quite apparent that my body is just not holding up under this recent attack -

bottom line, my body is screaming in distress - whether this is due to the disease or the treatment or a combo of both is not known...

but today the decision was made to cease my treatment

my condition will be re-assessed in a week

how do i feel about this?

to be honest, i am struggling with it.

i'm conflicted yet at peace?

if that makes sense...

albeit i don't know that much of anything ever makes sense with this disease.

lyme is an excruciatingly cavernous abyss of unknowns...

it is only thru the power of prayer and praise that i am able to keep trusting god and find refuge in this abyss

Have mercy on me, O God, have mercy on me,
for in you my soul takes refuge.
I will take refuge in the shadow of your wings
until the disaster has passed.

I cry out to God Most High,
to God, who fulfills {his purpose} for me.

He sends from heaven and saves me,
rebuking those who hotly pursue me;

God sends his love and his faithfulness.

I am in the midst of lions;
I lie among ravenous beasts—
men whose teeth are spears and arrows,
whose tongues are sharp swords.

Be exalted, O God, above the heavens;
let your glory be over all the earth.

They spread a net for my feet—
I was bowed down in distress.
They dug a pit in my path—
but they have fallen into it themselves.

My heart is steadfast, O God,
my heart is steadfast;
I will sing and make music.

Awake, my soul!
Awake, harp and lyre!
I will awaken the dawn.

I will praise you, O Lord, among the nations;
I will sing of you among the peoples.

For great is your love, reaching to the heavens;
your faithfulness reaches to the skies.

Be exalted, O God, above the heavens;
let your glory be over all the earth.

-Psalm 57

MRI AND ESCORTATION

I am going for my MRI tomorrow

please pray for this

obviously, i have some anxiety over what this could reveal...

but
at this point
i am more concerned about just making it to the appointment and enduring the MRI

i cannot move around without incredible pain
walking is agonizing and fatiguing
being upright leaves me breathless, sweaty, shaking, twitching
and makes my heart race uncontrollably
if i push myself hard, i can tolerate sitting up for about an hour MAX

the only thing i have been out of bed, off the couch or out of the house for in the past 10 days is my detox and doctor appointments
all of which have required ESCORTATION

OK
i doubt escortation is actually a word
but sometimes my brain malfunctions and i say wierd things or can't find the right word in my head
so apprently the other day i said "escortation" when i meant "escort"
after graham figured it out, he thought that that was very funny
ha ha. not.
but stress can make you a little hysterical.

anyway
after "correctly" using "escort" in a public setting...as in saying...

"i need an escort";
"i'm going out with an escort";
"i am waiting for my escort to pick me up."
"your pillow is in the car. your seat is reclined. your escort is ready for you."

that sounds far more scandolous and embarassing to me than using a word that is non existent in the english language....

voila, escortation is born.

and well, i have to find a way to laugh about this otherwise i'd just cry

i hate this
i cannot drive
i cannot walk without help and support
i hate feeling helpless
but
the reality is that we NEED help
i need help
heavens, i need an entire "escortation team"

i've had to rely on my mom, my M-I-L, my friend
and of course Graham
when 'heavy lifting' is in order
(me being the 'lifted' -but, EXCUSE ME i'm blaming the heavy part on my lymph fluid)

my escortation team is such a blessing
everyone is very gracious
but i know that they are overwhelmed by the need
and stressed out and tired out

and with no relief in sight, we could all use a whole lotta prayer




PS
thx to those of you who have sent messages of encouragement in response to my last post, your encouragemnt and support mean more to me and lift me up more than i can adequately express.
xoxo
s.

WHERE IT'S AT

WHAt you see is what you get!
***this is me in my unedited, upspelled checked lyme glory - past 2 weeks my neuro symptoms have gone haywier - i'm too tired to correct and make pretty - this post has taken me a week to rite as it is!! hopefully its legible enough for fokls to get***

WHERE IT'S AT?

Where it's at is well hard to say...
i guess, where it's at is all over the map

locationally, i'm back home - thankfully, i had freedom from my most troubling symptoms and ironically was the 'wellest' i had been for the entire trip on our flight home...thx to those of you who prayed for this, given what i dealt with while in SF i am so grateful i had some relief for our flight

unfortunately, this relief proved to be a temporary reprieve
like
the lull before the storm
or maybe more like
being in the eye of the hurricane

we arrived home LAST friday nite, and ihave ben more or less bedridden since then

so
where it's at is...
i'm back in bed or couch FULL TIME
whther herx or relapse, no one can really say
there is speculation that it is a relapse
however
i'm just referring to it as a "set back"
sounds less ominous

where it's at...
physically:
well, to be blunt, all hell has broken loose
here's the "short list" of my symptoms:

lyme encephalitis
severe sore/stiff neck
fevers
perpherial neuropathy (numbness, burning, tingling in arms and legs)
tachycardia and arrythmias
Shortness of Breath
full body internal vibration
visible neck and hand tremors
chest pain and pressure
joint pain-feels like there is gravol in my joints
unrelenting headache
kidney pain
blood in urine
rectal bleeding
visual impairemnts and hallucinations
noise sensiitivities
sleep disturbance, insomnia
mobility issues
difficulty tolerating an upright position for more than 45 minutes
etc...
etc...


where its at...
mentally
hmmm...that's a tough one right now
based on the results of DR H's assesments, my neurological and cns (central nervous system) is severly impaired
these abnormal findings of his tests are indicative of lesions forming in my brain and/or spine

i will be undergoing an MRI in order to assess whether or not this is the case

i would like to believe that this disease has not done permanent damage
i had a discussin abou thtis with my cnadaian dr and he believes that it is not permanent whish was reassuring to hear
but, nvertheless
i wold appreciate prayer as some anxiety over this still remains


where its at...
is not where i want to be!
the reality is that this really sucks
its excruiciating place to be
and it is terribly hard formy famiily

these times take us from survival mode and throw su into crisis mode
crisis on overdrive
how long will this last this time?
impossible to know, impossibel to predict
much scrambling needed to do to make life keep moving forward

graham is run off his feet
how do we get the kids to shcool
and get me to necessary medical appointments
who do we clall to help

we are forced to lean evne ;harder on our already exhauted ffmaily and friends for help
and that is hard
asking for help is HARD
i hate being a burden

you'd think after all this time i would be better equipped to deal with this
and yet i am not
each time anixiety levels rise
there is som much unknown, un-answerable
much emotions surging to the fore front
understanably
everything and everyone is left feeling discombobulated during these times
tempers flare and overall coping mechanisms fly out the window
and i am the worst offender

HOWEVER,
aside from that

i feel pretty good
lol

all joking aside

where its at...
is not what its about!
thankfully god is bigger than all of this

AND
for the most part,
emotionally i am well
flood gates haven't opened up on me
and i am not depressed
god is sustaining me
through his word and through song

and for that i am incredibly grateful


yup
where its at...
is not where i would choose to be
but god is here with me!

i had some super deep moments of discouragment while we were in sf
cried out for god to giveme something to pick up my spirits
it tooka couple days kept coming up empty in my devotions
but finally break through came during our drive up the coast line....

"how great thou art" and "it is well with my soul"
(click on songs if you'd like to listne)

yes, breakthru in the form of these 2 timeless songs,
their lyrics and melody co-mingling, intertwining and melded together in my lyme twisted brain as i veiwed his great world from the car winjdow:

O Lord my God, When I in awesome wonder,
Consider all the worlds Thy Hands have made;
I see the stars, I hear the rolling thunder,
Thy power throughout the universe displayed.

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.

When through the woods, and forest glades I wander,
And hear the birds sing sweetly in the trees.
When I look down, from lofty mountain grandeur
And see the brook, and feel the gentle breeze.

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

It is well, with my soul,
It is well, it is well, with my soul

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;.

The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul

this disease robs me of my mind and body
and at times,
it crushes my spirit
however it
will not,
has not,
CANNOT ever rob me of my soul,


where its at is....
it is well with my soul

"it is in the quiet crucible of your personal, private sufferings, that your noblest dreams are born and God's greatest gifts are given in compensation for what you've been thru" (-wintley phipps)

Sleepless in Pain in San Fran

Yesterday we spent on the coast near Half Moon Bay. Very pretty area, great pizza at a joint called "It's Italia".

Not a good day otherwise. Shannon is feeling like crap again, and it's dreadful. She's in a ton of pain. No sleep either.

We both anticipated that this visit to San Francisco would be more enjoyable with her recent upswing of energy. However, something has returned with a vengeance.

What exactly might that be? Who really knows... maybe that we ran out of Alinia - that has been back-ordered, and will be at least another week.

Then again, it might not be just that. She's dreading the flight back home this evening. And the days that follow...

Frustrating, and waiting for this pain to go away. Pray for, and keep praying for her.

- Graham

THOSE DARN BUGS

Spent a LONG afternoon at DR Hs today.

He's pleased with my progress however it is VERY S-L-O-W...and this he is frustrated with. i'm with him on that.

he feels my progress is so very slow b/c my body is very poor at eliminating the endotoxins that are produced from the bugs dying.

basically the bugs, both the LIVE ones and the DEAD ones are a major problem for me. how ironic. those darn bugs, eh?

my babesia infection continues to be of greatest concern...and along with the toxic effects of the babesia dying off is causing my shortness of breath, vision problems, arthritis, myalgias and headaches and neurological deficits.

upon exam my nervous/nruological systems are of major concern with DR H stating several tmes "this is bad. very bad."

but i shall remember that overall i have been doing so much better.
jsut so happens that right now i am not so hot.
pretty bad
i have steadily declined since we got here on monday
i haven't been this bad in at least several weeks...severe nite sweats and pain so bad i'm not getting more than 4 hours of sleep....
so DR H is not seeing me at my best, right...yup....

i left my apointment with him with a total of 5 NEW prescriptions....mostly to drugs to fight the babesia

of the 5, i will be seeing a return of mepron to my treatment protocol.
and i cringe at facing this drug again (even DR H cringed onmy behalf and apologized)
mepron produces death defying herxes

so there's more but i'm just too tired and too sore
and i supose somewhat discouraged

not so much from the appointment, i don'thtinkg, more to do with just feeling so terribly rotten...i had pretty big expectations for this trip....was really hoping that this time would feel like a 'vacation' and we'd be able to do a few 'touristy' things....can u believe i couldn't even handle being in Target??? I mean seriously, target, I love target and i didn't WANT to be in Target!

but yuo know, tomorrow is another day...we are planning on takng a little drive up the coast to have a visit with Marie. i'm really looking forward to seeing her and the beautiful california coastline.

IN SF

Hi
we're here
and
im vary tired

post more later
see DR H on WEd @ 1pm

thx for yor pryers for JEN - she's doeing well

xoxo

IN HIS TIME

one of my greatest struggles in my journey with lyme, as i have waited for healing, is trusting God with His timing.
i know that his timing is perfect...
from my perspective, it has been and is an agonizingly long wait
filled with grief, desperation, disparity
despair and hope so intricately intwined

i first wrote about this challenge in Dec 2007

as this journey goes, those emotions are still with me today. some days more than others.

today is one of those days

Jen and I

at 8am this morning, my dear friend Jen will be wheeled into surgery, to undergo a 5-7 hour operation to remove her cancerous kidney tumor
and me
well, i'll be on my way to the airport to catch my flight to SF to see DR H.

from my perspective that is BAD timing

despite the fact that Jen totally understands and actually told me it made her happy to know that i will be working on my recovery, i was devastated to learn that i will be gone, far away from her as she faces one of the biggest, scariest times in her life.

away away away
why why why
i have cried and questioned
it has truly broken my heart

i don't know why
but i do know that God knows
i don't understand why
but i know that God does

and i know i have to trust him, seek him, praise him
and
relinquish my futile attempts to control the timetable

"i praise you in advance for the part these difficult and painful things are going to play in your good plan for us - in eventual deliverance and growth and fruitfulness. i'm grateful that in all these things, the battle is not mine but yours....and the final chapter has not yet been written. Thank you that these trials force me to trust you more!

you are a God who acts on behalf of the one who puts his hope in you. thank you that you are at work to answer my prayers in your good way and time. thank you for the past victories you have won in my loved ones' lives and for the victories we will yet see in the future.

i praise you that as time goes by, in new ways you will show us your goodness in the land of the living."

(quoted from "31 Days of Praise" by Ruth Myers)


i am so grateful that He graced me with supernatural strength
so that i could spend a special evening with Jen and some of our dearest and OLDEST (tee hee) friends



a time of laughter, prayer and tears

Jen, although a Canadian, may very well be Barack Obama's greatest supporter. and so it was only natural that we give her an 'obama' inspired anti-cancer party

And so "The OBAMA Campaign" was born:

Oh God
Beat
All
McCain-cer
Amen

"the campaign box"

"contents of the campaign box"

FYI: Orange is not Obama's favorite color (at least not to my knowledge)
but it is the Kidney Cancer Awareness color

BEAT CANCER?

YES, WE CAN!

YES, YOU WILL!

please, please keep Jen and her family in your prayers


You can get updates on Jen by Clicking Here

MY MOM IS MY HERO

my mom is not just my mom, she is truly my best friend.
my rock. my strength. my cheerleader. my shoulder to wail on.
my mom is my hero.



she has modeled to me a remarkable faith; an unshakable belief in the sovereignty of God and and an unwavering belief in the Promises He gives us.

recently i came across a link to a website called "Shades of Grace" It is the story of a young woman named Natalie who is battling lyme. Her story is both heart wrenching and inspiring.

http://shadesofgrace.org/video/other/other1.wmv

i've spent the last 2 weeks perusing her sight and listening to the audio segments of her story. last weekend, i listened to Natalie's mom, Sandra, share how she survived her daughter's journey.

The Challenge to Sandra's Faith in God's Promises
How did you survive it as a Mother?

it wasn't until i listened to Sandra share, that it hit me just how painful this journey has been for MY mom. i don't think i have ever truly understood what my illness has cost her...sure i've been aware and have recognized (and appreciated) all that she does and all the sacrifices that she has made on my behalf. but i have been too wrapped up in my own suffering to fully appreciate that she has suffered right along with me.

what has it cost her to make the sacrifices she has made
to come week after week to help care for me and my family
what has it cost her to carry the burdens she has endured on my behalf
the hours she has spent doing laundry, cleaning house, making meals
or the times she has needed to mother my children rather than 'grandparent'
or has whipped me around the mall in a wheelchair so i could do my Christmas shopping
(okay that was actually a fun day)

what must it have cost her when she spent HOURS listening to me endlessly wail into the phone
marathon phone calls where ALL i did was weep into the phone
so weak that the phone was propped up beside me on my tear drenched pillow

what has it cost her to put up with me when i am miserable, grouchy and mad at the world
and yet when i have been at my ugliest
a puffy, snotty, drooling, gasping, shell of my former self
she has told me i am beautiful, strong, courageous and loved
what has it cost her to 'lose' her daughter over and over
i cannot imagine what agony this placed in her heart

what has it cost her to hear me beg God to let me die
what must it have cost her to have me beg her to pray for it to end
when my depth of despair has been so profound and the pain so agonizing
and the journey has felt so frightfully hopeless
what has it cost her to not be able to kiss it all better

when there is no end in sight, no cure to be found
when there have been no answers only endless questioning
when all hope has been dashed and i have been broken
she has been the one to remind me that there is hope
my hope, our hope is in God and His Promises
she has been the one to remind me that he promised to heal me
that he is faithful and He WILL fulfill his promise

and when she tells me that God will make good on that which he has promised it has meaning. it has fortitude. it has power. it has strength. it has credibility.
it is believable because she has lived it, she has modeled what it means to cling to God's promises throughout my life. God's promises to her have gotten her through incredibly desolate and painful times. promises that seemed impossible and unbelievable but through persistence in prayer and faith, she has persevered long enough to experience the fulfillment of those promises.

God is faithful to keep His promises.

and so,
i know,
and
i believe
that the day will come when my lyme will be dead and buried - and i will be healed.

Mom, thank you for the countless times you have reminded me that that day WILL come. Thank you for silently suffering alongside of me on this journey of life and lyme.

mom, did i ever tell you you're my hero?
you're everything i would like to be
you are the wind beneath my wings



i can only pray that i would be able to mother my children with the same grace, courage, strength, wisdom, persistence in faith and perseverance in prayer that you have modelled to me.

i love you.

please listen to the song in my heart:

WIND BENEATH MY WINGS

I HATE PANTYHOSE!

It's my baby cuz' s wedding today
and i am well enough to go!

and rather than just basking in the joy of being able, i am preoccupied with a serious dilemma.

to hose or not to hose
that is the million dollar question

i HATE pantyhose with all my heart
however
the RESULTS that putting on a pair of pantyhose can deliver are none to one

it is truly a miracle the degree of constriction and compression that can be attained by their torturous silky sheerness.

but even still,
i HATE pantyhose
glorified body armor is what they are
oh the things that us women endure for the sake of 'beauty'
psshhtt!

i'd like to think after everything that i have been through in the past 3 years that by now i'd be a little more evolved than to worry about such frivolous and superficial things as sucking in and smoothing out or lifting and seperating my cheeks from my thighs...

and in all seriousness that thought actually gave way to a moment of self reprisal
until it dawned on me...

the fact that i actually care about how i look
is actually another sign that i am getting better
and
the fact that i would even remotely consider or entertain the thought of giving up comfort for the sake of looking good?
wow, after spending most of the past 3 years in oversize t-shirts and baggy track pants, the panty hose dilemma is actually a healthy sign!

but i'm not quite there....
anything too tight or constrictive just isn't tolerable or doable....yet

and so
in a fit of deranged rebellion, i have cut up all my control top pantyhose, and in an act of womanly defiance and divine inspiration, i turned those fishnets into a blinged out PICC Line cover


and now excuse me if you will, i'm about to shove my swollen bare toes into a pair of killer heels and march myself and my uncontrolled jiggly bits to my baby cuz's wedding...

and i will laugh and love and live
why?
because i am ABLE...

and i am so very excited to get to spend an evening with the incredible extended family that i simply adore

and you know what?

i know they love me, too....jiggly bits and all


PS

EMILY - you were simply stunning...and seeing that i was hose-less i can honestly say that it was YOU who took my breathe away!

Congratulations and much love to you and Rob!

xoxo

PRADA OR GUCCI?

"The Fashionista"

So the advent of my recent progress has gifted me with the ability to take Avery to school.
as in walk her to school.
yup from my front door to her school is only a 100 meters...however for most of this school year i have been unable to negotiate that "staggering" distance




and now i am able to do it.
and on a good week, i'm able to do it a couple times.
and its a big deal.
for her. for me. for the whole family.

however
being on iv roughly 3.5 hours a day means that sometimes my IV bag must chaperon our little walk.
the first couple of times that happened, i truly felt like a spectacle. but being gifted with the ability to take my daughter to school easily won out over my embarrassment.

fortunately i can leave my iv pole at home.
but i am definitely a site for sore eyes...even though Avery doesn't start school until 12:30PM, it has been such a stretch to just get myself out the door that i have made that 100 yard dash IN my pajammas. on more than one occasion. okay. actually most of the time.
yup
here i come world...bedraggled and haggard, iv tubing slung over my shoulder, toting my big old bag of zithro with as much grace and dignity as possible.
and hoping against all hope that no one notices.
yet feeling like i have the biggest, brightest spotlight pinned on me.

and then it happened one day.
from across the parking lot came the loudest, cheekiest shriek i have ever heard,

"Hey Shannon! Is that bag Prada or Gucci?"

and with that question
all embarassment evaporated and i laughed and laughed.
laughed like i haven't in a long time

in that moment, my friend Tammy made me feel like a million bucks


and today, i am so excited to be well enough to head to Avery's class for a special Mother's Day party


my only dilemma?

co-ordinating my outfit with my bag!

ESCAPE TANNING...

ah, wouldn't it be lovely to escape to a sunny, warm local and soak in some rays for a couple of days?


and maybe i can. maybe i will.

I'm due for my next in office appointment with DR H, so graham and i will be leaving for California this coming Monday, May 11.
i have been obsessively checking the weather network for California.
the weather man is predicting it will be a balmy 24 degrees in the SF area next week.
won't that be grand!

however
that's really not what this post is about.

it's about ESCAPE TANNING...a tanning salon not too far from my home.

i have been going to Escape Tanning twice a week since November
but have no tan to show for it.
but that's because it's not your average tanning salon...
not by any stretch of the imagination!

they also specialize in Ionic Detoxification and Infrared Sauna Therapy.

my ionic foot bath

- yes, it smells as bad as it looks

phew! poor George!

escape tanning is conviently located 3 doors down from where i go for my lymphatic drainage massage therapy. these are all therapies that DR H prescribed as part of my treatment protocol.
it is best if they are used in conjunction with each other so it is an added bonus that they are in such close proximity to each other. while some may raise an eye in skeptism and consider it hokey (i know i sure had my doubts at the beginning) all of these therapies have made a huge difference in my overall health. most notably they help to alleviate the severity and intensity of my joint pain and stimulate my sluggish lymphatic system. and when i am not able to do them together or as often as DR H advised, i can see and feel the difference.

escape tanning is a family owned and operated business. run by Mom and Dad, Sophie and George and their daughters, Tanya and Lorie.
their motto is "our priority is you"
is it ever
they truly go above and beyond

over the past many months, i have often been touched by their care and concern
they have shown it in a mulitude of ways:

from having tea ready for me to sip while i detox
or the day i came in to discover they had bought a portable heater to blast me with because they had noticed that i am always cold;
from the "just checking up on you phone calls" when i was too sick to come in
or just chatting with George as he keeps a watchful eye on me and my stinky feet;
from the empathetic hugs on days when i hobbled in like (as they put it) "a 90 year old man"
or the times i've just socialized with the girls about girl stuff

the list goes on and on...
they have truly gone above and beyond

since starting my million dollar drug alinia, i have sadly had to cut back on my visits to escape tanning. even though these are doctor prescribed therapies, they are not covered by medical. and they are very expensive.

last week, George told me they had had a meeting about me.
"do you want the good news or the bad news first?" he teased me
"oh no, what did i do now?" i chuckled back, "better give me the bad news first."

"well, you are going to be seeing a lot more of me again." he said
and then he made me cry...

he told me that they had noticed i wasn't coming in as often as i should. and they knew why. and that is why they would no longer be accepting payment from me.

"what? why?" i choked out between my disbelieving sobs

"because we just want you to get better. so, you just need to promise me you'll come as often and as much as you need."

escape tanning...above and beyond

tanya, sophie, george, lorie

thank you to this genuinely caring and incredibly generous family
you've made a difference in my life

so if you live in my neck of the woods and are up for a little detox, or catching some rays or indulging in a little nail art (lorie does amazing pedicures/manicures) or just in need of a little TLC, then Escape Tanning is the place to be!

TALKIN' 'BOUT MY GIRL

my baby girl is 6.
wow.
time flies.
so cliche.
but so true.




it seems like just yesterday that she made her much anticipated, much awaited debut into our family.


avery has a unparalleled zest for life... matched only by her passion for pasta.




and at the ripe old age of 6, she has her entire life planned.

and as she puts it, is very concerned that she is running out of time to find a husband.
yes. really.

the birthday cake she designed....

resplendent with wedding bells and doves.

she is going to marry chase... or arjun... or matthias.
but hasn't quite decided who would make the best husband...she says she is currently "weighing her options"

chase seems to be the front runner tho'.
she says she likes his spiky hair.
avery has been completely enamored with chase and his hair since she was 2.
chase is 18 and one of taylor's good friends.

recently chase was over for a visit. and avery was over the moon. chase good naturedly endured her not too subtle adoration.

after he left, she kept saying in a sing-songy voice,
"i love chase! oh, boy, i love chase with all my heart!"

graham remarked to her that he thought she loved jesus.
"isn't jesus in your heart too?" he asked her.
"oh daddy, of course jesus is in my heart." she giggled, "you are so silly daddy, chase isn't in my heart....he's in my brain! boy, oh boy, is he EVER in my BRAIN."

she has decided she will grow her family through adoption
1 boy, 2 girls.
she will name her son indiana jones, her first daughter marion and is still deciding on the name for her other daughter.

between now and then, she has plans to save us all from becoming fashion victims.
it is a job she takes very seriously

she likes to put on fashion shows because as she remarks, "its just like 'What NOT to Wear' except i KNOW what to wear... but i should be on the show in order to help others."
(watch out stacy and clinton! you've got competition!)

but until this self proclaimed fashionista gets her own show,
she is happy to give free advice to those of us that need it.

and apparently there are many of us out there.

most recently she was overheard saying that don cherry should be on "What NOT to Wear"



naturally i assumed that she meant he needed help with his wardrobe. (after all, in most people's books, he is a prime example of what NOT to wear)
however

i'd have to say her wardrobe choices strangely resemble his outrageous get-ups



given that she feels herself to be a paragon of fashion maybe what she really meant was that he, like her, is a perfect example of what TO wear.

who knows?
maybe they both know something the rest of us don't
and the joke is really on us.

MY GIRL

i've got sunshine
on a cloudy day

when it's cold outside
i've got the month of may

i guess you'd say
what can make me feel this way

my girl

my girl

talkin' 'bout my girl

i've got so much honey
the bees envy me

i've got a sweeter song
than the birds in the trees

i guess you'd say
what can make me feel this way

my girl

my girl

talkin' 'bout my girl

i don't need no money
fortune or fame

i've got all the riches, baby
one man can claim

i guess you'd say
what can make me feel this way

my girl

my girl

talkin' bout my girl

PROGRESS...A MATTER OF PERSPECTIVE

"one step forward, two steps backward"
is the saying often used to describe the journey of battling Lyme disease.

the minute you feel like you are starting to make progress is about the time you end up excruciatingly sick again. the minute you think you have finally bid farewell to a nasty symptom, is the time that it chooses to rear its ugly head again. or within minutes of feeling like you are able, the cold hard reality of attempting to do becomes your undoing.

yup, enduring the natural ebb and flow of this disease is probably the hardest and most brutal emotional roller coaster to endure.

however i think i've stepped into a new era.
one step forward, ONLY 1.5 steps back.

i am making progress.

thinking that
saying that
feeling that
sharing that
absolutely terrifies me

i had started this blog entry the day before i ended up being sent to hospital. i guess that helps to explain what i meant by saying that seeing, thinking, feeling, sharing that i am making progress terrifies me.

you can go from thinking you are seeing the tiniest snippet of light at the end of this deep, dark tunnel of horrors only to have it cruelly and acutely snatched away in the blink of an eye. only to be left feeling as if all the clawing and digging in the world will never give way to permanent light.

however
progress is a matter of perspective
and aside from the drama of the last 2 weeks

i AM making progress

while most of my days are still low functioning - meaning that a good portion of most days is spent on the couch and herxing still leaves me bedridden and debilitated for days or weeks at a time.

however the quality of my low functioning days is better. meaning i am in less pain and most of my symptoms are less intense. even the days or weeks that i am herxing are more bearable and less insane to endure.

that is huge.
progress is a matter of perspective.

the big thing is that i am getting about 5 days per month that are 'good' days...insanely good. i have even had 6 MOMENTS where i forgot that i was sick.

6 glorious fragments of time where Lyme ceased to exist in my mind.

THAT IS PROGRESS
forget it
THAT IS MIRACULOUS

so while i still spend a huge portion of each and every day in the prone position on my convalescing couch, i can honestly say my quality of convalescing is significantly improved. and while the quantity of 'good' days has not grown, the quality of those couple of good days per month has sky rocketed!
and i am starting to be able to do things i have not been able to do for the past 3 years.

this is huge.
this is progress.

here's some of my progress in the last 2 months:

roughly about 6 weeks ago i had a 'physically well' day, so i went for a little walk around the block - you know get some fresh air, clear my head
imagine my surprise when i went home to the WRONG house
obviously it wasn't a 'mentally well' day

however, progress is a matter of perspective

as i dazedly tried to navigate my way to the right house, i realized that i had actually walked ON the sidewalk for the entire block - wasn't so long ago that i had to walk on the road because walking on the 'hilly terrain' of sidewalks made me feel like i was climbing Kilimanjaro and the 'driveway dips' exacerbated the arthritis in my knees something fierce.

again, progress is a matter of perspective

recently i set out for my first walk around the park by our house.
more accurately, i set out for a walk with the purpose of doing it for exercise -
that was huge

the first time i was able to walk around the entire park, i cried.

who cares that i had 2 pregnant women lap me whilst doing it.
alright, in all honesty, i cared
it bugged me to have them breeze on by while i huffed and puffed my way around
after all, i used to run 10km every day

to soothe my bruised ego, i quietly, secretly, in my head, yelled after them,
"oh yeah, think you are all that, huh? lapping the skinny, jiggly chick? well just so you know, i was at the gym working out the day before i gave birth to my 3rd child!"

again, progress is a matter of perspective.
(and yes, skinny people do to have jiggly bits!)

the first time i made it around the park TWICE in a row...well, i actually wasn't sure...my brain misfired and i couldn't remember if i had actually gone around once or twice
but it's the thought that counts, right?

again, progress is a matter of perspective.

not too long ago, i walked 3 blocks to our local library with Avery and Parker. this was not a new feat however i wasn't miserable and in agonizing pain when we arrived. and the fact that i didn't feel as if i could keel over at any minute was new. it was a heady experience.

again, progress is a matter of perspective.

in fact, i actually felt so well, that as Avery perused the Dora DVDs, i checked out the exercise videos and brazenly thought, " i think i feel well enough to attempt that" - and i picked out a beginner exercise DVD called, "10 minute Workouts for Dummies".

Avery asked me what movie i had. when i told her it was a beginner excercise DVD for dummies, she graciously patted my arm and said,

"oh mommy, you're not a dummy. you just have lyme disease."
so poignant. so touching. so funny. so ironic.

again, progress is a matter of perspective.

never mind that a few minutes later i was hit so hard with an avalanche of symptoms that i had to call graham to come and pick us up. i sat there aching and twitching, thinking i was really dumb to even think a little fitness was possible - until i realized... the fact that i had even THOUGHT that i could do it was hugely remarkable!!!

again, progress is a matter of perspective.

and you know what? i owe the library 3 weeks worth of overdue charges...and not just because i forgot to keep re-newing it....but because i determinedly and stubbornly kept that DVD at home until i did it.
yes, i finally did it!

the entire 5 minute warm up section!

again, progress is a matter of perspective.

and this dummy, this ditzy, topsy-turvy gal is winning her war on Lyme