What could be the cause?

For how many things can you test, research, treat, and repeat

Before you get to your end with hands empty again and again?

Like a parasite sucking the life out of you while it hides in waiting

Adding to your pain, lighting the match of your symptoms once and again.

Don’t expect the ones paid to know to really know anything at all my dear,

Outside of their textbooks even if they read them, even if they look at you at all.

Because if you don’t fit the pattern you really may have no where you can go

And temptation will come to do things only animals might do to get by.

Sounds sick but there is someone out there who understands this bad rap

And sits with you facing that brick wall with pieces of dreams that no longer fit.

You can’t make this stuff up yet this is your reality.  How cruel it really is.

………….

The One who really knows

Has that name you cannot forget

He hung in front of scoffers

Hands nailed, sharp spear in His side.

He chose to hang from that cross

To bear the consequence of this world

The effects of evil you endure

That just wasn’t supposed to be.

He still weeps for your pain

Knows it all very well

Stays near, hear Him speak

Words of comfort if you but dwell.

Never let Him go little broken one

It will help you endure

One day all will be well

That promise is ’cause He loves . . .

And on that you can rest.

Yes, it is now time to go to bed.

………….

Don’t fear the seizures that may come

They have made you braver than anyone

Who else could face the tempest each night

Yet rest in his den without trust in something more?

How ever have you come this far

When so many would have died two thousand times

If you were not given supernatural strength

He has ordained for the days to come?

Only your Lord knows the day and time

When all will be made well, be made right

Until then you hang in there my precious child

I love you and will rock those shakes in my loving arms.

Think on that when the tears surely come

Knowing all are held in my two hands

I count them, bring them my righteousness

In a way only I now understand.

You must trust me albeit a bit blind

Have I not restored from the locusts before?

Have I not given you the love of your life

The dreams of your heart in your home?

So with confidence that comes from Me

Go forth into the night as it becomes day

Knowing My time is not of this world

And your gifts don’t come wrapped as for others.

You will be rewarded for trials

I have promised and this you know

Just trust in your Lord, Jesus Christ

For His love, His goodness will be evermore.

…………

And so I did.  My title was the wrong question.  My answer is Jesus Christ.

JJ

couple at sunset, couple by the shore, kissing, sunrise, couple at sunrise, Christian marriage, Christian couple

There’s no where to go but . . .

sun-breaking-through-dark-clouds-300x192

Hubby begins his flying adventure

First on the ground then looking up

To the skies, to fly through the air

My beloved wants to be there someday.

So shall I for the depths have been too long

My darkest of nights came yesterday

Trauma that comprised abuse when

Care was needed instead, oh my!

I shall consider what to do, to pray

And listen to my man and my Lord

This just cannot go on or I will not

So all things must go up from here . . .

 

Treatment Update

OC, OC2, outrigger canoe, tandem, kayak, canoe, 2 man, Hawaiin, boat, Huki, canoeing, kayaking, together, marriage, paddling

It’s time for a yearly brain dump, hopefully keeping my heart in the right place (2 Corinthians 4:20) as I do so!

The last Treatment Update was quite bleak and posted when bedridden most days of the week.  I am grateful to report that it is no longer true!  As I described briefly in the About Julie page accessed in the side bar of this website, in January of 2016 I did proceed with the treatment of neuro-Lyme disease with 3x/weekly IV infusions of Rocephin (aka ceftriaxone), initially administered daily for 2 weeks.  Insurance stopped paying for the treatment after the first 28 days so I quickly transitioned to home infusions via a home health agency.  My time has been consumed managing the medications, supplies, scheduling, set-up/laundry tasks, and more required in having these and other treatments right here in our living room.  I also started full spectrum infrared sauna treatments 1-2 times per week.  The ongoing expense is tremendous and frankly has depleted most of our available resources.

But has it helped?  Yes:  I am doing better than I noted on November 11, 2015.  Except for a recent increase in symptoms (suggesting treatment resistance and a need for a change in medications), I am no longer having convulsive episodes 2 to 5 hours per day with one day exceeding 12 hours about every 2 weeks.  I am no longer bedridden most days of the week.  Most weeks I can get out for essential errands such as grocery shopping and gratefully I was able to paddle our outrigger canoe or more stable kayak 5 times this past year.  I praise the Lord for this progress!  My reactivity to noxious stimuli and mold has diminished about 30% allowing me to participate in a social function about one time per month without a marked increase in symptoms.  I attribute a good part of this progress to my work with brilliant naturopathic physician and genetic coach, Dr. John Catanzaro, of Health Coach 7.  There is more work to do however.  Progress remains slow.

After much struggle, prayer, and perhaps a leading of the Holy Spirit, I consulted with my Lyme Literate Medical Doctor (LLMD) earlier this week regarding a change in my treatment plan.  He has decided to change my medication to a combination of IV Rocephin/Zithromycin regime for Bartonella:  a co-infection that often accompanies borrelia burgdorferi (which is the primary bacteria of Lyme disease).  Bartonella is often associated with seizures, peripheral neuropathy and some lesser symptoms that are a part of my clinical picture.  Oral antibiotics of minocycline and Plaquenil may follow; it is common to use multiple antibiotics currently for Lyme disease when chronic with neurological complications.  There are ongoing supplements for treating biofilms (ie. the mucous membranes in which the organisms hide), detoxification, and nutritional goals as well.  The new treatment plan begins tomorrow . . .

I am required to have the first dose of the new medication administered in a medical facility before it can be administered by my infusion nurse in home health care.  So tomorrow I will re-visit the outpatient clinic of our local hospital where this phase of treatment began earlier.  I have come a long way since then!

Starting an IV or accessing my power port used to trigger up to 20 minutes of violent convulsive episodes every single time!  Sometimes I had to be accessed in more than one peripheral site due to the collapsing of my veins, hitting the valve of a blood vessel, or the pain/severity of the procedure.  The started isolating me in a private room due to the concurrent involuntary screaming episodes!  That is no longer the case.  Also, the entire infusion appointment used to require me to be at the hospital up to SIX HOURS before I was stable enough to walk out the door.  The nurses in the outpatient clinic left at 5:00 p.m. so they would transition my care to the staff who worked until 8:00 p.m. so I could sit alone in the quiet, deserted treatment rooms until the post-treatment episodes resolved.  Again, this is no longer as severe.  I do miss watching the remodeling shows on HGTV during the treatments, however.  We don’t have cable TV at home!

The journey has been long and difficult:  October 11th marked 5 years since I got sick with viral hepatitis after kayaking in the Cedarville Reservoir near our home and November 20th marks 5 years since the first seizure attack episode.  I have cried many grievous tears for so many different experiences of loss and incredible suffering.  There have been 3 minor surgeries with only 1-2 days of pain medication each time; the number of convulsive episodes is in the thousands.  I have now had counseling to cope with the trauma of this extended illness and to prepare me for the day when I will recover, return to life.  By the grace of God I have been able to complete the continuing education credits needed to keep my occupational therapy license active although I have not been able to work since February of 2012.  My husband and I have faced unbelievable stress, the depths of heartache together.  And even so, we are hopeful that someday I will recover fully.

Our Lord, Jesus Christ, has stated that those who believe in Him will have strife in this world but to not lose heart:  He has overcome the world (John 16:33).  He has been the strength that both Steve and I have needed to endure and overcome the worst hours of torment (Psalm 73:26).  He sent His son so that we would not die in our sins of the consequences of living in a sinful, fallen world but have everlasting life (John 3:36).

This means that my life will go on beyond these struggles, this suffering that I have endured and one day be with Him without the tears of this whole ordeal (Revelation 21:4).  That special kind of joy and peace shining in my heart even now will blossom into all joy and dancing as I trust in my Lord and Savior through it all (Deuteronomy 31:8).  I have cried out to Him on my bed of sickness (Psalm 41:3) and He has led me by His Holy Spirit time and time again (Mark 13:11) as He did the disciples before there time of unimaginable persecution.  My suffering, our suffering pales in comparison to that which persecuted Christians endure every day for their faith.

Thank you Lord for helping me and Steve to endure this illness.  We are encouraged for my progress and sense that it has not been wasted:  I raise this testimony up to you that Your glory may be revealed in our lives.  (Romans 8:18)  To You alone be the glory.  Please bless the Gentle Reader reading this today.  Thank you for loving us and bringing us together (1 Corinthians 5:4).  In the name of Jesus Christ I pray.  Amen.

Romans, 15.13, hope, encouragement, joy, peace, scripture, blog, overcomer, endurance, power of the Holy Spirit, Holy Spirit

In the thick of things

Just before the dawn breaks open the darkness

The night seems the blackest, the air the coolest.

But really what difference did it make to the day?

It was already breaking forth before anyone could see it.

Stumbling over rocks and brush and twisted debris

I would not think there was a way out of those woods . . .

Only the squirrels knew where the last canopy reached:

It was already marking the clearing before I could see it.

The shiny reflection on the pavement up ahead

When travelling along the road at high speeds

Suggests water on the horizon but alas, it is not to be

It was already stretching out forming a new illusion to see.

Things just aren’t what they seem along the darkest trails of our lives

Yet we pretend we know what is to come from the markings underfoot

Better to trust in the love of the One who sets us free to explore these

He is already there with adventures in-hand if we but open our hearts, widen our gaze, and keep walking ever nearer to Thee.

For He will never leave us, forsake us, forget us, deny us you see

Jesus loves us, precious in His sight and placed perfectly in the Father’s timely gifts

And the places He wants us to go will yield more good than that we ever could foresee

Oh how it will simply make more sense in the clearing someday under the sunshine beyond . . .

For now I am just going to keep walking.  Gentle Reader:  care to join me?  JJ

fall-colors-from-fb

Weary from the road

Christmas chocolate.small

“They say no pain no gain

I say roses are worth the rain!”

Or so the song went that I wrote back then

When “recovery” seemed like something I could attain.

Decades later I realized the wisdom of Robert Hasting’s Station

A place where you reach your goal, Nirvana, the prize, all you’ve been awaitin.’

Too bad life is often not like that:  the good, the bad, the ugly all take their turn

You never really know what you are going to get when your head lifts from the pillow at dawn.

And so goes my new treatment when things have gotten worse before getting better,

How is this even possible when it appeared the Lord orchestrated these steps to the letter.

Now faith means holding on to that which is unseen for the promise of my Lord’s Day

When the suffering will end, be redeemed for glory whether it comes soon or some other way.

I borrowed my beloved’s belief tonight when mine was just too shaken to go on any more–

With love in his eyes, his heart he prayed for healing and more once again like so many times before.

We know our Lord hears us and that we have His will, His heart within our own

I just pray I can hang on this weary road that seems to have gone on just too long.

[Please send chocolate . . . pure unsweetened cocoa butter works best right now.  JJ]

************

My hope this night is the promise of my Lord and Savior that, “He will wipe every tear from (our) eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”  Revelation 21:4  Somehow, someway, I am going to make it, Gentle Reader!