May 23, 2009


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 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
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

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
i'm just referring to it as a "set back"
sounds less ominous

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

lyme encephalitis
severe sore/stiff neck
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

where its at...
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
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

aside from that

i feel pretty good

all joking aside

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

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

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.

Align Center

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

Align Left

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)


Marsalie said...

Those 2 songs in particular helped get me through the loss of my mother as well. They are beautiful words about an amazing God. Shannon my heart breaks to hear of your setback and I pray that God continues to give you peace in your heart, even though your body is in so much pain. You are always in my prayers!

Renee said...

I am so sorry you are going through so much again. The ups and downs of this illness are so challenging, to say the least. And trying to figure out what is what and what caused what is frustrating.
You are in my prayers this day. Your courage gives me coourage to keep going when I find myself back where I started or sliding down into the abyss once again.
May God dreach down and touch you with His healign hand.


Renee said...

PS from Renee
I wanted to tell you that I also have the neuropathy mostly in my hands arms, legs and feet, although when it is bad it is even in my scalp and back, etc.
I have the relentless internal vibrations too and it was a great comfort to me to hear that people with Lyme get least when I was first diagnosed. Now I would just like to to go away!
Your honest sharing is really helpful to me and I am sure to others. God is using you to enocurage others. God bless you for that.

Nancy said...

Shannon...thinking of you today and thought I would catch up on reading the blog. Tears overwhelmed me as I read through your pain. May God surround you with His everlasting arms right now and relieve your pain. May He continue to bring rest and peace to you. Above all may your soul continue to be protected...may it remain well with your soul. Our love and our prayers are with you and your family. Rest...dear friend...God is watching over you and He is faithful...even in these painful times...He is there. Praying for you in the tough times and rejoicing over your baby steps. Love you...The Reimer Family