July 15, 2009

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




11 comments:

Renee said...

Shannon,
First of all,I want you to know that I respect you for your courage to honestly share what you are feeling with all of us~ your readers. I am so sorry you are going through so much and suffering so. May God reach down and gently gather you in His arms.
I could have written this post myself on my own journey with this devastating disease. You are echoing my thoughts and those of countless others too. You are in my prayers for God's guidance and direction. May you find the place deep inside of you that tells you what is right for you...for your body....for your own healing whether that is a cure or not.
In June my LLMD made the statement that she thinks I should be looking at an herbal protocol due to the fact that i would be "fighting Lyme Disease the rest of my life". This really stunned and discouraged me, but it also confirmed in me the thought I had been having of doing an herbal protocol....because of the damage the abx were doing to my body. I had to take high doses for the H Pylori bacteria to die in my stomach, and being on Clarithromycin and Flagyl in high doses for even a short time was devastating for my body. I am still recovering 2 weeks later...so I think it is amazing you were able to do what you did for so long with the IVs. I know of one woman who was on abx for 9 yrs BUT she did recover! I know of a woman who had undiagnosed lyme for 37 yrs and used organic foods, homeopathy, and the herbal protocol and she has recovered! Each of us is different and what is right for one will not be right for another.
In June my husband was diagnosed with neurological lyme too. We are trying to deal with this right now and it is so hard to watch him be so weak and exhausted as he starts treatment. Our future is uncertain...but it is really uncertain even when we are well!
Again, thank you for your honesty here. Your faith in God strengthens us who are privileged to read your inner most thoughts.
Please know you remain in my prayers as you decide what is best for you.

Dylan Richards said...

I'm not usually at a loss for words, but I have a feeling that my words aren't really needed. So instead, I'll do this...

*HUGS*

The best part about that hug is that you can use it whenever you need it. :-)

Naomi Balzer said...

Oh Shannon,
I am sitting here reading your blog with tears in my eyes and goose bumps on my arms....and totally crying out to God to heal your body and your pain! All of it! I know He can do whatever He chooses....but your right in your thinking that MOST of all He wants us to glorify HIM. I don't have answers....just know that I am recruting MORE of my family (down in California) to pray each and every day for you....and I will keep on asking more to pray....
Keep on trusting....each day! ~Naomi

s. said...

thank you all so much for your support, love, care, concern and hugs ;)

i am humbled by it
and
i am touched by it

it means so much more to me than i can express

love s.

Anonymous said...

Dear Shannon--It is very difficult to honestly share our pain and also share at the same time our ongoing journey in faith and trust in a God who is always good and full of power, but sometimes appearing seemingly slow to fulfil a promise. You have beautifully done this. May God pour out His Grace, Peace and Power on you.Love Betty

Anonymous said...

You are able to express where a lot of us find ourselves and don't have the guts to say it. Thank you for your honesty. I was worrying about you with no current blogs. Continued prayers as that is all I have to give.
Ken, Patti & Emilie Redekopp

Anonymous said...

Oh My Gosh this is EXACTLY how I feel ,I am dealing with Lyme also and its like Im scared to take my meds but Im also scared not to!I too beg for GOD to heal me and it gets harder and harder everyday to still have faith! I wonder if I will be like this till death it is alot to bear! I thank you for sharing this ,Im sorry u are going through this but Im glad someone feels as I do!
Prayers

Anonymous said...

Shannon

You know our love and prayers go out to you as you continue your journey, even during those amazingly tough times. Keep up your blog, you touch so many lives and help so many others through their own difficult times. Thanks for your care, and encouragment as you have helped me through some very tough and discouraging times lately. I really appreciate the prayers and support even as you are dealing with so much yourself.
Love s

Kate said...

May God bless you for your continued faith and perseverance in Him!

"He will wipe away every tear from their eyes.
Death will exist no longer;
grief, crying, and pain will exist no longer,
because the previous things have passed away."
~Revelation 20:4

Maria said...

I love this post Shannon. I have never commented on your blog - but reading this, I had to. I prayed this exact 'stuff' for you just yesterday. Ruthless trust in a sovereign God is not logical. Go with it; and walk it with Graham.
Just around the corner from this hopelessness is something better.

btrflynana... said...

Shannon,
In my recent blog I wrote "I am by far not defeated, just depleted"

Hang in there don't stop fighting. This is the battle for our life...

In the quiet times listen HE will talk... you will hear!

You are a very strong, courageous woman...don't forget that you are the daughter of a King!

You're not alone on this path...and we walk beside you, holding you up in these times of doubt and exhaustion and in times when you're rejuvenated we celebrate with you just the same!

Thank you for using what little energy you have to bring your fight to the forefront of the world for others to experience and learn what this battle is about!

God bless you and may you feel so much better soon!
Hugs Karen aka btrflynana