Our God Reigns!

Seeing this sweet perching of morning doves is such a mixed blessing this morning.  They are able to sit there because yesterday I was able to cut down the massive out branching of a clematis from lower on the trellis.  Also washed the flagstone patio of dirt and some algae.  I should have worn a mask for both projects.  Acute sickness and violent convulsive episodes followed within the hour and at the beginning of a sweet Skype call with my hubby’s son and family.  So sad.
However, the experience was diagnostic in that I am dealing with biotoxin illness now more than anything else.  Also I am tolerating targeted treatments for this for the first time in 4 of these 5 1/2 years of illness.  Lord willing, I am going to get well!
Gentle Reader, let the morning doves portray the hope that I have each new day in my Lord and Savior,  Jesus Christ.  No matter what may come, our God reigns!  Very fitting the week before Easter don’t you think?

JJ 

She remains silent

The Jane magnolia remains silent at the birth of April’s Spring

Her violet blooms resting beneath garments of fuzzy gray pods

Waiting, tempted to peek into the sunshine, then waiting some more

For emerging too soon would be to her peril and loss of beauty, my dear.

Oh if I but could rest not by angst but by design like my friend

Knowing the Divine timing and trusting therein better than I have

That loveliness would come in the fullness of my time as well

Instead of deadness, jagged edges of pain, the tazoring of my mind.

Will there come a day when I shall join you in the sunshine of morn’?

When I unfold to freedom of spirit, of movement as in song so sweet?

Where there is little thought to my comings and goings:  I will just go

Just live and give and do and think, knowing all is right with the world?

I do not think it is right that I should suffer so day in then day out

With hope only of heaven when my hopes are dashed 10,000 times and more

The seeking compels me for hours:  pouring over records, research, and facts

Only to be smashed against the wall of my limits, my fate, the unanswered prayer.

What will my own senescence bring?

There is no patience left in me to endure.

No resolve carries me through.

Tears from deep caverns gush forth . . .

But breathe I shall for time shall march forth into the Spring of each new day

Life will go on as our Lord promises His love will go with us along the way

Perhaps one day I shall “bloom where I am planted” as the ol’ poster exhorts

Ever loud, ever quiet, ever true for having stepped out in faith ever simply,

and even ever small.

JJ

 

Jane, magnolia, poetry, Christian, gardenng, Spring, pink, flower

One Day

Friday my Doctor recommended some new supplements to further my care and seemed pleased at some progress revealed in retesting of my gut health.  But neither product is available right now; instead I had to crash in bed that night and most of Saturday.

Yesterday I thought I would work on trimming a sterile plum tree in our backyard that is riddled with black knot disease.  We are trying to save it for a few more years of it’s flowering glory in the Spring and rich wine-colored leaves in the Summer.  It was not to be so today.

Tomorrow I hope that my trial of THC-free hemp oil will resume with receipt of a shipment in the mail.  I didn’t realize when I started it recently, how much I would need nor the extra timing needed for shipments across our country.  This could help resolve the seizure attacks as soon as this week . . . if I get the dosing right . . . and if the next shipment arrives shortly thereafter.  But there was a fire in a warehouse between here and there, threatening my continuity of care.  Maybe I will have enough?  Maybe not?  Lord knows that one day we will have figured this all out!

When today came I thought I might clean our bathrooms and floors then complete an infrared sauna treatment before heading outside.  Instead I was sick.  Only the sauna treatment happened.

Then later and just when it looked like the core of my treatment plan was coming together, another infection sent me and my beloved to the walk-in clinic of our local hospital.  Geez oh man.  Steve offered to take me out to dinner last night but I could not make it.  I was hoping to take a walk with him and the pup in the sunny, 50-degree weather.  Nope, not today.

I cried a lot before proceeding with what we did need to take care of me today.  Life sure is funny.  Perhaps some medical appointments this coming week will clarify what I should do next to get well in addition to responding to urgent changes that seem to come along every few days.  And maybe someday, one day, we will make plans for something fun and they will really happen!

In the meantime,  date nights will be at a clinic or pharmacy at Walgreens or driving to the nearest metropolis for a fancy  NeuroQuant brain scan.  At least in the case of the latter, we got to see a dear friend, Mary, for a quick lunch at Freshii’s in Chicago’s Loop.  Now that’s making the most of a day, eh?

Straining to trust in my Lord this night.  Choosing to trust in His Word and promise to carry me through it all no matter what may be one day for:

There is a time for everything,
    and a season for every activity under the heavens:

    a time to be born and a time to die,
    a time to plant and a time to uproot,
    a time to kill and a time to heal,
    a time to tear down and a time to build,
    a time to weep and a time to laugh,
    a time to mourn and a time to dance,
    a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,
    a time to search and a time to give up,
    a time to keep and a time to throw away,
    a time to tear and a time to mend,
    a time to be silent and a time to speak,
    a time to love and a time to hate,
    a time for war and a time for peace.

What do workers gain from their toil? 10 I have seen the burden God has laid on the human race. 11 He has made everything beautiful in its time.   Ecclesiastes 3

Not just another day

In this moment I feel quite normal.  I kissed my hubby goodnight as he drew me close for an extra snuggle before drifting off.  You would think that I would turn over and fall asleep near his warmth and care but that simply was not the case for yet another night . . . That is just not the way things go around here far too often . . .

How come the wretched hellish experiences of mine have become a normal occurrence around here?  Here’s what I mean:

  • Puzzling symptoms lead to medical appointments and tests, passage of time while I research answers, doctor visits for the results, the start of some new treatment, and (instead of relief) the exacerbation of the symptoms we were supposed to be curing!
  • Prescriptions, supplements, special diets, manual therapies, trial-and-error yield results that wax and wane in effectiveness until they are simply useless or make me worse.
  • Professional counseling determines that the origin of this serious illness is not psychological however the trauma of it brings sadness every time and sometimes even triggers memories of every and any bad situation I have ever endured.
  • My beloved’s rising to the cause of caregiving, from chores to feeding or assisting me to the toilet, eventually helps me recover just before he must either leave the house for work or retire for bed with his own case of exhaustion.
  • Expenses beyond belief take away tremendous resources intended for the future:  a time plagued with stress and uncertainty from not knowing when or if these troubles will ever end.
  • Hope can appear on the horizon as I make temporary progress or we discover new medical explanations for my suffering only to have that hope dashed, crushed, and covered with new diagnoses, new complications.

Today was not just another day.  I cannot tell you the grief that I experience after losing one more to continuous convulsive episodes.  This past weekend I missed the lovely snow softly falling outside our bedroom window:  our first major snowfall in the Midwest.  I didn’t get to delight in watching Steve cross-country skiing out our back door with the spirited Elle pup who LOVES the snow!  If I did get out of bed this evening it was with dangerous fright as my body shook, anxiety raged, and my mind calculated if I could do at least one simple task for myself before racing back to bed in a pile of screaming seizure attacks.  Those episodes with respective recovery periods totaled about 15 hours today alone.  Lord have mercy!

This is no where near normal.  Only by the prayers of fellow believers did I get through Friday with 3 different lab procedures, an IV infusion, a doctor appointment, lunch with a friend, mold avoidance procedures, and a trial of a new treatment remedy.  I collapsed into bed for almost 10 hours of sleep without any episodes then BOOM, the next 2 days were largely problematic.  One drop of a new remedy that may have eased my symptoms of Friday made me worse as Saturday turned into Sunday.  Somehow I did get some Christmas cards ready-to-go however!  Wow.  That is simply amazing.

Please forgive me that my tone is angry tonight.  I do not have words of encouragement, scripture to bring hope or any insight as to what the heck is going on with me.  There are new problems with which to contend.  Tonight I am in survival mode.  It’s 3:08 in the morning and I have to get things set up for my home infusion care tomorrow morning:  an expensive treatment of merit I seriously question.  Chronic Lyme disease?  Heavy metal toxicity?  Which one is it already?!  Maybe before I go to bed I will try to finish cleaning a bathroom that I started 2 hours ago?  Surely I will eat some more to try to restore the calories spent screaming and writhing in bed today . . .  At least my back is feeling some better though.  Hooray!

So here’s to Christmas cards getting together and less back pain.  I have a roof over my head and food in the frig to munch on shortly.  My beloved is sleeping soundly and welcomes my chilled feet on his warmed body when I will join him in an hour or so.  Well there ya go.  Some sweet signs of normalcy do exist after all amidst some sweet blessings too.

I just can’t stay upset very long with you listening Gentle Reader.  Thank you.  Here’s a cartoon for you.  You rock!  JJ

bedbugs

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