Treatment Update

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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

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In my neighborhood

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If all I could see most days was that beyond my window

I would delight in the four seasons of color, of life given the neighborhood.

If all I could hear was the barks, creaks, whirring, whoosing inside our home

I would be reasonable for the solace of being alone brings peace between each one.

If all I could smell was the beast under my feet in our mostly clean house that we share

I would concede in the relative order of things that hasn’t gone to awry in my senesence.

If all I could feel was an occasional cool breeze blowing in from the opened blind beyond

I would love that this Fall has been quite mild, keeping my toes a wittle warmer at night.

If all I could sense was the softness of my baby blue-colored robe as I write these words to you

I would be glad for one area of comfort that stands out amongst the rest . . . in gratitude.

And if all of these things came true as they have this day in our home, in our neighborhood

Then I say that I am at peace with the world:  God is good.  All the time.  He is so very good.

For it is in the ordinary things of life in which we live and find our meaningfulness each day

On this street here with my hubby, our pup already asleep, with me saying “good night” one and all, and Godspeed too.

Psalm 121, peace, coming and going, gratitude, rest, forever

I miss you

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A Letter to My Former Self:

I miss you dear one:

Your silliness, creativity, spontaneity, occasional complaints.

You have left me here quite empty

With shards of who you once were hanging in a forgotten frame.

If only she would come back

All things would be right again with the world, no?

Yeah that is a definite nada

Since we can never retrace the exact steps that brought us here anyways.

“So what to do with my longing?” I ask.

That’s a tough question barely understanding the answer that has come,

For we will not be happy back there

This foolery we must shed to fully be present in the “now.”

For Christ alone provides the joy within

Not circumstances nor that driven by the shallowness of this life.

Better to place one’s heart in the Lord’s hands today

And consider the blessings that would have been missed had we gone another way.

I cannot get back what has been lost all these years

Better for me not to miss the opportunity before me this very hour,

 

Than to have myself facing the wrong way when my Savior comes to take me home.  JJ

ephesians 5, 5.17, ephesians, Lord, will, my life, let go, let God

Things come into focus

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The recipe just wouldn’t do:  this brew concocted for my veins

I winced in shock when I saw the potential for disaster next week

And made the call to express my concerns, my fears in shaky voice.

The Assistant was gracious, no complaints there but what about him

Whom had not been available yet directs my care via messaging

And has way too many details engaged to respond to my simple needs?

Just to stop the seizures and minimize the suffering is all I really want

But that is the golden coin just beyond my reach now matter how long

And how far, how often, how many, how little, how far-reaching the attempts have been.

You’d think after nearly 5 years since this hell on earth began in my tender frame

That one of these brilliant folk would have figured it out by now, but NO(!), longer I wait —

And believe me I have tried, have prayed, have laid down my sword along the way too.

Nothing of  note has come to pass although the hell is generally shorter and less robust

I still live in impending doom every day, still waiting for the spike that rocks my world

And consumes me as much as it frustrates; I hold on to the moments in time I have here or there.

Someday this suffering will be over, I am assured since it was not always here

My Lord, my Savior is coming back for me and His to make all things new and right

And that includes an end to my daily trials:  oh how sweet that day will be, maybe soon!

Until then Gentle Reader, say your truth whilst asking for what you need

Let those in the know hear you and stick with those who bother to care

And one day soon, the focus will be on something else than your strife, my dear, guaranteed, guaranteed.  JJ

Ecclesiastes, 3:11, beautiful, in His time, waiting on the Lord, patience, waiting, burdens, trials, God, Lord, Jesus, trust, Christian, answers

 

 

Now for some horticulture therapy!

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Some good things noted in our gardens this year included:

  • Plants from our local Master Gardener Plant Sale did really well at bargain prices; patience paid off by the end of the season for the new rose bush ($5) and 2 tomato plants ($1 each).
  • Variegated liriope (with the purple flower spikes) was a great addition to our newest island bed (until the rabbits found them!)
  • Around the flagstone patio, the hydrangeas, Japanese maple, dwarf mugo pine, and Golden Thread cypress have matured to form a nice screen between us and the neighbors.
  • We got a nice showing from the (clumping) bamboo through continuous soil enhancements and 7 years of waiting.
  • The hydrangea vine that now covers a great deal of the trellis by the front door bloomed for the 2nd Spring in a row after waiting 6 years.
  • Elle continue to love drinking out of the bird bath almost as much as the birdies.
  • The anise hyssop re-seeded itself at the base of the trellis on the left of the patio instead of the right this year.
  • Walker’s Low Catmint is the most profuse blooming perennial I have ever seen.
  • Painting the planters black that adorn the bird bath was a good idea, helping to keep the focus on the annuals planted within them.
  • I got to make a lovely Fall wreath from our hydrangea blooms (picture to follow).
  • Dahlias never disappoint; I’m glad I planted all 3 of them in the front yard this year.
  • We are grateful for our first, ever-bearing harvest of blackberries since establishing the raised bed 4 years ago.

Footnotes for improvements next year:

  • Put hardware cloth (wire fencing) in front of the mulch pile to keep out critters from dining on new additions.
  • Move the wisteria by the left trellis and the cannas from between the trellises to sunnier areas.
  • Install a new and permanent mylar deterrent above the bluebird house to scare off intruders.  Ours blew off!
  • Coach our plant sitters a little more carefully when we are away to keep the cucumbers from perishing.
  • Thin out the native plant bed to help keep ahead of the lemon balm re-seeding and Catmint spreading.
  • Re-work the new strawberry bed area to save time trimming around everything.
  • Oh and about 15 other projects!  Is a gardener’s work ever really done?

Thank you Lord for your bounty and beauty, the grace and strength to keep things going as best as I could, the blessings of sharing our harvest with others, and for a lovely view out my window on the days you know I needed it most.  You are so good to me!  JJ

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