A PIVOTAL DAY

Today has the potential to be the start of HUGE, PIVOTAL change in the diagnosis and treatment of lyme disease. please pray for the landmark hearing that is going on in Washington, DC in regards to the diagnosis and treatment of lyme disease. pray that the truth would finally be revealed.

Historic Hearings On Most Controversial Disease in US: Lyme Disease

Lyme Patients Gather in D.C. and Around the World to Push for Better Treatment and Recognition of Chronic Disease

Story Summary:

• What happens if a tick borne illness is missed, or left untreated? Millions of patients say they suffer from chronic (or long term) Lyme disease. But gatekeepers in the medical community refuse to recognize illness.
• Connecticut Attorney General sued gatekeepers (Infectious Disease Society of America, or IDSA), forcing the oversight panel to review its controversial treatment guidelines that bar patients from getting a chronic Lyme disease diagnosis and treatment.
• Hearing to review long suppressed scientific evidence that Lyme disease can become persistent and debilitating.
• Lyme disease patients from around the world will watch the DC-based hearing via webcast & participate in an international Twitter Chat to share reactions

"The medical establishment will be forced to consider the strong scientific evidence that Lyme disease can become persistent and long term infection that may require more aggressive treatment than what is allowed in the current treatment guidelines", says Dr. Daniel Cameron, President of the International Lyme & Associated Diseases Society (ILADS). Cameron will join several doctors, scientists and patients testifying at Thursday's hearing.

The Infectious Diseases Society of American (IDSA) holds this hearing in response to an antitrust investigation by Connecticut's Attorney General Richard Blumenthal. In his groundbreaking lawsuit, AG Blumenthal charged that the IDSA guidelines for Lyme disease prevent many seriously ill patients from getting necessary treatment. A 2008 settlement resulted in the IDSA agreeing to create a new panel to review its guidelines.

Doctors treating Lyme disease aggressively with long term antibiotics are targeted by medical boards and insurance companies and face losing their license."READ MORE HERE.


the IDSA guidelines that are under review are the exact same guidelines that the Canadian medical community has adopted as practice. in fact, in Canada, these American guidelines are emphatically adhered to at the detriment of thousands of Canadians. (READ HERE and HERE about some of my own experiences with this biased attitude...)

the ONE leading lyme disease doctor we had in ALL of Canada that was willing to treat lyme outside of the stringent IDSA guidelines was harassed for 7 YEARS by the BC College of Physicians and Surgeons. In January 2008, he finally succumbed to the enormous pressure and was forced into retirement. this meant myself, along with thousands of other Canadians (were) and are now forced to seek treatment in the US.

click on link to watch - BC LLMD FORCED INTO RETIRMENT

ultimately, it was this systemic bias and prejudice that eventually forced me into seeking treatment in the US and THE LYME LIFE FLIGHT was the end result

unfortunately, my case is not the exception to the rule.

so, as you can well imagine, today has the potential to be incredibly pivotal moment for change. please pray for the long suppressed medical research to be given fair review. pray that the truth would finally be revealed.

we need for this disease to be recognized, across the board, as the chronic, persistent, debilitating, life threatening infection that it is.

we need access to treatment. we need the doctors who are willing to treat LD, to be able to do so, free from the threat of recrimination and harassment.

ultimately, we need more research done to find a cure.

many people's lives, mine included, depend on it.

SOLACE IN LIMBO

I AM IN LIMBO
i continue to be off of all treatment.
i continue to slowly deteriorate

i don't know what to do
but
i know where to turn

i know God will lead me out of here
He and i
well we're about to mambo out of this limbo
it's just a matter of time
er, hold up a minute,
may be advisable to scrap the mambo,
after all, i'm mennonite
and
mennonites don't dance
however
mambo and cha-chaing aside
i know he'll make a way out
from between this rock and hard place
this limbo state of being that i find myself in

don't know how
don't know when
until then
i am in limbo

in limbo,
i am free
from popping 40+ pills a day
i am free
from running IV 3+ hours a day
i am free
from the agony of herxing

but
i am not free from lyme
it is always with me
despite
my prayers for it not to be

in my limbo state of being,
i have days i can
i have days i can't
on the days i can
i do
on the days i can't
i struggle to do even the simplest tasks
like walking up the stairs
or
pouring a glass of milk
or
holding a fork

in my limbo state of being,
i keep hoping and praying that the
can do days
will begin to out number the
can't do days
but the opposite is true

i keep hoping and praying that
the way out
does not include
more treatment
more meds
more herxing

i don't feel like
i can do that anymore
more than that
i don't want to do that anymore
but
more days than not
i think that that is indeed what
He is calling me to do

but
i keep hoping and praying
that i'm hearing wrong
so
i keep listening and listening
and
i keep hoping and praying
and
i really don't know what to do
and
so i remain
in my limbo state of being

and
amazingly
He gives me solace in my limbo

in my state of " i don't know or maybe i don't want to know" limbo

God knows
and He consoles me

he knows my heart
my aching desire to do His will

he knows my fear, my trauma, my heartache,
keeps me stalled
in this state of limbo
and
my solace is that he understands
and
my solace is that He is here
with me

limbo
can be a scary place to be
fear of the unknown
fear of the known

limbo
is not knowing
but God knows

solace
is knowing that God knows
and
solace
is knowing that the unknown is known by God

and because of this,
my state of limbo has become a place of solace
a place of refuge
a place of rest

limbo is
a place of surrender
and
a place to be still

"Be still and KNOW that i am God." - psalm 46:10

in Him, i am still
in Him, i find solace in the stillness that is my limbo


"thank you that I can be still and know that You are God...that you are in control...and that i can restfully depend upon You and absorb Your strength and joy and peace. thank you that i can give myself up to be led by you...that i can count upon Your working in me and through me as a FACT, totally apart from sight or feeling... i praise you for the gracious way you will infuse me with inner strength through Christ...so i will be ready for anything you want me to do, and i'm equal to anything you allow to happen in my life..." (-Ruth Myers 31 Days of Praise)

SO WHAT'S NEXT?

i have been off of all meds for just over 6 weeks now.
initially, it was necessary for my doctors to stop my treatment because my body was just not tolerating it (as evidenced by my crazy labs and haywire symptoms)

while we were waiting for the results of my tumor testing, DR H wanted me to re-start my oral meds for my babs infection. i tried to re-start my orals however, even small doses, made my body too toxic and with quick succession i would land right back on the couch or in bed full time.

it took close to 4 weeks off of all my meds for the intensity of my symptoms to let up and for me to experience some relief. it is just in the last 2-3 weeks that i have been able to have some semi functional days.

loosely defined, "semi- functional" can mean a variety of things. but currently in my world, 'semi-functional' means that if i am at the top of my game and having a really, really good day, then i am able to be "up" for anywhere from 1-3 maybe 4 hours before having to retreat to the couch or bedroom to recover.

i am grateful that i had a good run on some semi-functional days at the tail end of June/beg of July. this happily coincided with me being able to join my family and attend the YFC National Ministry Conference. (more about that at a later date).

currently, if i take any of my meds, i am not functional at all.
if i remain off of them, i have some semi-functional days.

and yet, those semi-functional days are becoming sparse and few between. last week, i found myself almost exclusively "couch-ridden" again. I was weak, exhausted, twitching, aching, and struggling with severe shortness of breath. yesterday and today, my symptoms were more manageable and so i could be semi-functional again.

the frustrating thing about this is that even though i am currently more functional off of treatment,
it is still profoundly clear that i undoubtedly need to be on treatment
without treatment, there is a slow but unmistakable progression of deterioration in my overall un-health

so i feel like i am between a rock and a hard place
treatment -
can't live with it;
can't live without it

quite frankly that sucks
it's a depressing and discouraging place to be

things feel pretty impossible right now

so what's next?
well, i know what my doctors want
one way or the other
they want me back on treatment

DR H is frustrated and perplexed
but he has a couple of new strategies he'd like me to try
he wants me to try a new IV medication
he also wants to add another doctor to my team;
"DR L" is a cellular nutritionist/ blood specialist
my recent crazy lab work would indicate that i could benefit from her expertise

it all sounds good
at least i still have some options left to try

however
I DON'T WANT TO TRY
period

to be frank and honest
i have pretty much lost faith in the treatment process
i just don't know anymore
do this, do that
take this, take that
i do and i do and i do
i endure and endure and endure
and yet there is no end
this fight goes on and on and on

i have now been on IV meds for 15 months
and bottom line is that
i don't feel as if i am any better now than when i started treatment 2.4 years ago
and
any improvements i do experience are short-lived
improvement is neither consistent nor is it lasting

so what's next?
not only do i not want to try
even if i wanted to, i don't feel like i could

both my mind and body are rebelling

so what's next?
what happens when your body "can't", your mind says "quit" and your will "won't try"?

this is a difficult time
ah, yeah, major understatement

this is also an incredibly difficult thing to write about
to admit
and
to acknowledge
and
to put 'out there'

it's hard to be vulnerable
it's hard to be authentic with my pain and struggle and hopelessness
and sometimes i worry that sharing the darkest parts of my journey might have a negative impact on someone else

but let's face it,
i am no pollyanna
(not that i ever aspired to be)

i don't think it comes as any surprise to anyone that
i have moments, days, weeks
where all i see is hopelessness

this is nothing new
i have been visited by hopelessness many times during this journey
and on my own,
i know i cannot raise myself out of it
in order to CHOOSE hope
(and it is a choice)
i must continue to choose God
seek God
pursue God
TRUST God

that works
remarkably well
imagine that

i know that
i have lived it
i have experienced it

so why now, after all this time, do i find myself so profoundly communing with my hopelessness rather than with my God?

even after all He has done for me,
i doubt
i question
i beg
i plead
i cry
and
i wonder
why hasn't he healed me yet?
how long must i suffer?
i stomp my foot in indignation
and scream
at the unfairness
the endlessness
the hopelessness

i kinda thought that the further into this journey i get, the EASIER it would be to continue to TRUST Him but i am finding that just the opposite is true.
the longer this goes on, the harder it gets

i trusted him with this journey when it began
and
i trust him with the end result

but do i trust him with the part of the journey that is between the beginning and the end;

do i trust him with the barrenness of the indeterminate, desolate middle space that endlessly stretches out between His promise to heal me and it's fulfillment?

do i trust his plan is good, even if the fulfillment of that promise is 5, 10, 15 years down that road?

that possibility terrifies me but why? i don't know if i can or even want to go there.

if i truly Trust Him and his good plan for my life, should the time frame really matter?
and if i truly Trust Him and believe in his promise to heal me, then how can i so readily and easily embrace hopelessness?
isn't that total hypocrisy?

well, i've been questioning and wondering about that a lot lately.

bear with me
as i delve into the chasm of my hopelessness;
and
plow my way through this sink hole of self pity, doubt, fear, panic, discouragement and disillusionment

last week, i truly wondered if possibly i may have misinterpreted my promise of healing
maybe God meant that i would be healed in death not in life
and so
i prayed for death to come
i begged him to take me
maybe even part of stopping treatment
has come from a desperate, messed up desire for that to happen

if that offends you
that is okay
it offends me
and i'm the one that has prayed it

how can i pray that?
how can i have the nerve to even desire death when i have a family?

feeling that way, at least in part, is the reality of the depravity of this disease
but even more so,
it reveals the depravity of my own human condition

in my humanity;
i only see the mother i am not able to be

in my brokenness;
i believe i am more burden than partner to my husband

in my pain;
i see only the scars that this disease inflicts on my family,
i see only what it takes from us,
and
i see nothing good coming from it

in the depravity of my human condition;
i do not see clearly
in the depravity of my human condition;
i fail to trust in God's good plan for not only me but for my family

i have spent a lot of time questioning and wondering and trying to understand God's purpose and plan in all this
and
i've spent a lot of time asking,
"So What's Next, God?"
but if i'm honest, rather than listening for the answer
i've been spending a lot more time
telling him what i think should come next

i know what i want
i want this to be over NOW
i think this has gone on long enough already!

i am tired of trying
i am tired of fighting

i am tired of the emotional cost
i am tired of the physical cost
i am tired of the financial cost
and
i am tired of not seeing a return on my investments

so, what's next?
well, if i had it my way,
i would want him to heal me NOW

Heal me, heal me, heal me!
i have begged and cried and pleaded
in the face of what feels like treatment failure
wouldn't a divine healing rather than a medical recovery glorify God all the more?

i am sincere in my desire for my journey to glorify God.
however
is my desire for instantaneous healing born from a sincere desire to glorify him or an understandable yet selfish desire for this suffering to just freaking be over already?

the bottom line is that
when i step out of my call to Trust Him, i fail to glorify him
when i step out of my call to Trust Him, i become a self-centered, know-it-all who shrieks,
"i need, i want, and you better do it!"
when i step out of my call to Trust Him, i have the nerve to tell God what i think he should do next!
imagine the audacity!
of ME TELLING HIM what would be best for me;
of ME TELLING HIM how he should best fulfill His promise to me

so what's next?
i'm not entirely sure
but
i know i'm finally ready to listen for His answer to that question


One Day At A Time
(Jeremy Camp)

One day at a time I will walk this road I've traveled so far
One day at a time well I know I will carry on
One day at a time I can see you took my life this far
One day at a time I will take this faith along

All this hope I breathe is given by the hand that carries me
Until I'm complete and I'll take all I will
To understand this plan you have for me, for me

I've been
shut up, shut down
held out, held down
In ways I never knew I would
But
I can feel your fullness in my life

Well I've been
burned out, broken
torn out, torn down
In ways I never knew I would
But
I can feel your fullness in my life

one day at a time

One day at a time I will take these words you've given me
One day at a time I will rest in knowing you
One day at a time I will share this gift you've given me
One day at a time I will walk these valleys through

And all I know is that I see
How much my heart is longing to be cradled by your side
Yeah, I'll give all I can
To one day soon be held by your hand, by your hand

I've been
shut up, shut down
held out, held down
In ways I never knew I would
But
I can feel your fullness in my life

Well I've been
burned out, broken
torn out, torn down
In ways I never knew I would
But
I can feel your fullness in my life

In all these things I will press on, yeah
I'll be with you I know it won't be long

one day at a time