There’s popcorn in the bed

Travelling can be both exhilarating and hazardous to one’s health all the same time.  Was it Mark Twain who said that life is either a daring adventure or nothing at all?  Yeah, he would be right at home in our house or rather our travel trailer!

And so I remain grateful for so much as Steve and I continue to navigate very odd circumstances while on the road. We have now passed the halfway mark in an Indiana, Alabama, Florida, and North Carolina road trip that has provided much material for future blogging already!  This stuff ain’t for wimps and we have proven to be mighty in the Lord.  Here’s a peek:

This morning I awakened at 11:30 a.m. delighted to have slept in after a wretched night.  Steve was arriving home to the tin can ranch after the closing meeting of his United States Canoe Association (USCA) annual meeting.  He was energized beyond his lack of sleep, ready to hit the big water off the coast of Florida.  A few bites of ham was all he needed:  the outrigger canoe strapped to the roof of my truck for the past 1000 miles would see water at last!

A blast of seizures delayed my plans for breakfast as Steve assisted me with a bite to eat and trip to the bathroom. Then he found a deer tick on his back!  We had hoped that the dangerous hitch-hiker was a loner but that was not to be.  Within an hour we had found about a dozen on his clothing and the floor around the camper entry.  Quickly we searched and cleaned, flashlights in hand until every inch of Steve, the dog, and our home away from home was cleared.  [Some parts of the search weren’t too bad!  ;)]  At last I collapsed again, this time into a pile of tears:  why does everything have to be so difficult all of the time?

Steve is a saint, this is true.  He quickly switched gears (and clothing!) for the paddling adventure that awaited him at Amelia Island State Park with a fellow paddler in from Arkansas.  I sent along two bars of chocolate from our hometown chocolatier to thank him for waiting for Steve plus Steve’s lunch that I had quickly assembled.  At last I could ravenously consume my makeshift breakfast of thawed lunch meat, canned green beans, ghee butter, and pumpkin seeds:  low oxalate on-the-road dontcha know!  Steve soon departed after pumping up the tires of my bike for me:  a tag-a-long I’d added in hopes of riding here in the warmer weather . . .

But I was just too tired to do anything but eat and check Facebook after my beloved departed.  Oh how I longed to be with him!  Someday soon we will again bring the tandem outrigger canoe (OC-2)  on such trips so I may join my River Bear on the water.  Yes, Lord:  maybe this year?  Instead Don and Steve will take turns paddling the OC-1 and have a blast surfing the ama (which is the float attached by two poles or iakos off to one side) and waves like true racers.  Meanwhile I grabbed the remainder of my bag of organic popcorn and prepared to return to my own version of life these days in my pretty bed.  And in due time, I did revive.

It’s raining now as this blog comes to a close.  My bike is at the ready, leaning against my inner left leg, with my beloved pup feigning off sleep on the floor just beyond my outer left leg.  O.K. so we are now also initiated to winter camping with way too many toys!  Funny how I don’t regret hardly anything about how we crafted this trip.  Most of the delegates stayed at the hotel where the USCA meeting was held and that certainly would have been more convenient than the RV park we ended up at which was a 25 minute drive north in Georgia.  The air was stale to me at the Hampton Inn with the stale scent of air freshener in the lobby.  Here amidst the palms we have fresh air ALL DAY and ALL NIGHT LONG!  I like that!  The rain dries up quickly anyways in the reddish soil sprinkled with pine needles.  We will avoid the tick path my hubby took with the dog this morning, no problemmo.  Here I can even see a few stars at night peeking through the overhead vents we keep open at night.  That’s refreshingly cool and very romantic too!

I could be at home right now in the frigid Midwest, writing my heart out amidst the foot of snow around our home and subzero temperatures.  This is better.  This is good.  This is what living a life of adventure is all about.  Why wait for a “rainy day” when everything will never be perfect enough to do the things which call one forward TODAY.  This IS that rainy day.  And hey, the rain just stopped!  I do believe I have carb-loaded adequately too!  Where is my bike helmet anyways?

Seeya pup.  Ima hittin’ my own road ya all . . .

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A Psalm for Times Like These

Psalm 40

New International Version (NIV)

For the director of music. Of David. A psalm.

I waited patiently for the Lord;
    he turned to me and heard my cry.
He lifted me out of the slimy pit,
    out of the mud and mire;
he set my feet on a rock
    and gave me a firm place to stand.
He put a new song in my mouth,
    a hymn of praise to our God.
Many will see and fear the Lord
    and put their trust in him.

Blessed is the one
    who trusts in the Lord,
who does not look to the proud,
    to those who turn aside to false gods.

Many, Lord my God,
    are the wonders you have done,
    the things you planned for us.
None can compare with you;
    were I to speak and tell of your deeds,
    they would be too many to declare.

Sacrifice and offering you did not desire—
    but my ears you have opened—
    burnt offerings and sin offerings you did not require.

Then I said, “Here I am, I have come—
    it is written about me in the scroll.

I desire to do your will, my God;
    your law is within my heart.”

I proclaim your saving acts in the great assembly;
    I do not seal my lips, Lord,
    as you know.

10 I do not hide your righteousness in my heart;
    I speak of your faithfulness and your saving help.
I do not conceal your love and your faithfulness
    from the great assembly.

Psalm 40 11

11 Do not withhold your mercy from me, Lord;
    may your love and faithfulness always protect me.
12 For troubles without number surround me;
    my sins have overtaken me, and I cannot see.
They are more than the hairs of my head,
    and my heart fails within me.
13 Be pleased to save me, Lord;
    come quickly, Lord, to help me.

14 May all who want to take my life
    be put to shame and confusion;
may all who desire my ruin
    be turned back in disgrace.
15 May those who say to me, “Aha! Aha!”
    be appalled at their own shame.
16 But may all who seek you
    rejoice and be glad in you;
may those who long for your saving help always say,
    “The Lord is great!”

17 But as for me, I am poor and needy;
    may the Lord think of me.
You are my help and my deliverer;
    you are my God, do not delay.

(Amen.)

Something that’s of worth

Hey how about playing this:  The Heart of Worship

When the music fades
And all is stripped away
And I simply come

Longing just to bring
Something that’s of worth
That will bless Your heart

I’ll bring You more than a song
For a song in itself
Is not what You have required

You search much deeper within
Through the way things appear
You’re looking into my heart

I’m coming back to the heart of worship
And it’s all about You
It’s all about You, Jesus

I’m sorry, Lord for the thing I’ve made it
And it’s all about You
It’s all about You, Jesus

King of endless worth
No one could express
How much You deserve

Though I’m weak and poor
All I have is Yours
Every single breath

It’s all about You…

Matt Redman speaks to my heart with his ballad on guitar:  words I can’t seem to get out any other way.  You see I have laryngitis!  Tee hee.  It hasn’t been fun lately on top of everything else so Ima gonna keep it simple and just dwell in the presence of my Lord and Savior, Jesus Christ . . .  Dwell with me for a spell, Gentle Reader.  The lover of your soul is waiting!  :J

The Nurse Who Wore Perfume

 

Nurse Ratchet from One Flew Over the Cuckoo's Nest
Nurse Ratchet from One Flew Over the Cuckoo’s Nest

After about 4 hours breathing fresh oxygen being pumped with fluids, I revived after a most bizarre episode.  The Benedryl made things worse yet brought about 12 hours of slumber on and off into the next day.  Whew!  What an ordeal it was . . .

Such is life when battling biotoxin illness, multiple chemical sensitivity, mycotoxicosis, Chronic Inflammatory Response Syndrome, or what-is-formerly-known-for-me-as Chronic Lyme Disease.  On Saturday I was counting the dollars and quarters from the neighborhood girls who bought friendship bracelets at our garage sale.  I noticed a familiar perfume scent on the money that reminded me of a houseguest not long ago.  Perhaps it was Flora by Gucci again?  Anyways, no sooner had I zip-locked everything into a sandwich baggie when I started to feel sickly.  Bizarre and violent seizures followed, ramping up and ramping down over the next hour.  Holy crap!

I knew I had overdone things somewhat working the garage sale and doing some yard work the day before.  But hey, we had some things to get rid of and were delighted to pass some items along for free.  The girls who bought the bracelets were adorable!  I couldn’t resist letting my initial Trinity Jewelry by Design originals go for 1/6 the original asking price just to see the smiles on their faces.  Of course the older sister next door would need and extra one for her sister who was away at a dance competition so 2-for-1 would be the best deal for her.  Same thing applied to her sister’s best friend who was in the midst of a little object lesson about not taking money from her mother’s purse to buy bracelets!  Lesson was learned and we had smiles all around.  I was so delighted to send them along and tell them the significance of the 3-bead design (for the Father, Son, and Holy Spirit!).  They looked down at their bracelets like they were hearing it for the first time.  That’s cool.  As they wear them each day I pray that the Lord brings more promptings of His love and gift of salvation through the Holy Trinity.

It’s Monday, I am breathing better today, and I feel reasonably stable.  The windows have remained closed as every-other neighbor seemed to be getting their lawns treated today with fertilizer and pre-emergent weed killers.  Ah the scents of Spring!  All fragrances don’t seem to bother me but I am not taking any chances one day after an imaginary trip to the ER.  Imaginary?  Oh sure, it’s all in my head you see.  They gave me a repeat psychiatric diagnosis probably leftover from the last time I was there over a year ago.  It didn’t matter that my biotoxin medical doctor from Michigan graciously called the hospital on my behalf with an update.  Chronic Inflammatory Response Syndrome just isn’t on their radar.  The ER Doc seemed to give the impression that he was understanding that the difficulty breathing, obvious seizure attacks, and intolerance to the cold hands of the admitting nurse were related to CIRS.  It has its own ICD-9 code don’t you know?  I guess they do not.  Out came the “non-epileptic seizures” and “feeling nervous” diagnoses.  I never said I was feeling nervous!  The third diagnosis was “tremors.”  Yeah, tremors that make your head bang aren’t really tremors are they?

Non-epileptic seizures have TWO causes:  1)  biological and 2) psychiatric.  Most medical professionals ignore the first cause.  If they were psychiatric they would happen only when I am under stress or have a need for secondary gain (like attention or control).  Sorry Doc.  These episodes happen unannounced, unprovoked, and at happy times.  They started with an exposure to a cyanobacteria when kayaking in a local reservoir with my beloved and some fun people.  I love my life with Steve and in general.  I am so blessed and grateful for so much even during this time of illness.  Armchair psychiatry without a work-up is wrong.  Test me.  I have nothing to hide.  So frustrating.

Shortly before the completion of the IV fluid and Benadryl treatment, a nurse came into the room to announce that the nursing shift had changed.  She checked the monitor and recorded my vitals before leaving the room in a puff of noxious and cheap perfume.  WHAAAAT?  Why do you think I am in the EMERGENCY ROOM NURSEEEE POO?  When she returned I gently but firmly asked her to leave and not return due to the same.  She said she had received “report” and knew why I was there.  HELLO?  ANYBODY HOME?  Two other nurses came in a bit later and before the IV pump alarm was set to go off (another sensory trigger).  I appreciated their timing and thanked them.  A bit roughly they disconnected the IV, removed the IV in my arm, and began to hurry us along.  Time to go!  I had to ask them to wait a moment as my body started seizing from the shock of the needle coming out of my arm.  Hey, it happens every time a needle goes in or out don’t you know? I really can’t make this stuff up don’t you know?  It simply isn’t worth it and would take too much energy anyways.  Just look at the outpatient records from the 21 IV magnesium treatments at that same hospital this past October and November.  Same reaction.

I felt numb on the way home.  My incredible husband made sure I was settled and quickly got outside to mow the lawn before dark.  I ate a light dinner as fast as I could to gain some strength before giving into the incredible fatigue.  Tic attacks woke me up several times as I slept for about a half of a day total.  The ordeal was over.  My third trip to the ER since becoming ill October 11, 2011 was over.

What do I do now, I wonder?  I mean there are binding agents that I can’t tolerate (chlolestyramine and Welchol) and one that I can (activated charcoal) tolerate but the latter doesn’t register on Dr. Richie Shoemaker’s biotoxin illness protocol.  During a wretched episode earlier last week the Lord gave me some insight that the activated charcoal might work better for me.   So a few grains of AC is all I am doing for treatment in addition to my own election for a mold-free, Candida, low oxalate diet.  Oh yes, and our home will become a safe-zone to reduce exposures.  Sadly there will be no more monthly home group.  I spent the last one in my bedroom with seizure attacks while the group worshipped, prayed, and fellowshipped in our living room.  Even the hint of fragrance amongst them was too much for me.  Sigh.  I  need the fellowship Lord!  And what about the friends and family who will be in town for my husband’s son’s wedding next month?  This is a heartache for both of us right now.  I love Steve’s adult children and his family.  I am grateful for them.  I guess I’ll be Skyped into the bridal shower . . .  And I doubt that I will be able to enjoy playing hostess to family that has not seen our home beautified since they were last here for our wedding 7 years ago.  It’s just so very risky.  Maybe it will be warm enough to visit on our lovely patio.  Hope so.

Oh well.  We’ll figure out something.  We always do.  Better leave that one for a future blog.  More prayer is needed before then fer shur.  JJ

It’s all I can do

Focusing on breathing today.  It’s all I can do.  The stress level is high as Steve and I anticipate travelling out of State to see my brother tomorrow.  Gratefully I report that it appears he is stabilizing after having had a severe stroke this past weekend.  My own struggles with illness and daily seizure-like episodes continues.  A new treatment for me didn’t pan out too well, increasing the severity of the post-treatment episode.  Oh well.  The Lord goes before me and all of us as we call upon His mighty name:  Abba Father!

Lord I need you now.

We got this.  Philippians 4:13

 

I submit Mike's left-sided weakness to the Lord who strengthens us all.
I submit Mike’s left-sided weakness to the Lord who strengthens us all.