Tag: Lyme disease

The County Sheriff and a mobile compost pile

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Sometimes the dirt in your life follows you around for awhile . . . literally!

The weather was unusually warm here in the Midwest of the United States this past December.  By “warm” I mean that it was still in the 50’s and that was all I needed to do a little gardening project still left undone from the prior season.  Factor in the heartache of having been too sick to do it earlier, you can see why I jumped at the chance to get some dirt under my fingernails before the snow was set to fly!

And so I did.  The borders around the flower beds and tree in our front yard were re-cut and tidied up for the wintry freeze to follow. A Master Gardener simply cannot have her front yard unkempt when visitors were set to come for Christmas celebrations . . . even if they are not into landscaping!  Afterwards I felt a little better about the whole thingy.  The cuttings went into the bed of my truck like they always do with the intent of making a quick trip to dump it at the town compost pile.  That never happened.  Such a bummer being sick virtually all of the time . . .

Flash forward two months.  I was headed in my truck to my doctor’s office, hoping that they would see me on time.  Usually we patients can call ahead to see how far he is running behind and to leave our phone number for a call when they have an exam room available for us.  The phone lines were either turned off or unanswered when I had tried to call so I hurried to get on my way, lest I lose my appointment altogether!  This arrangement is a minor inconvenience for most folks but a major undertaking for me these days.  I had a more severe seizure attack waking up that morning and barely had enough time to get ready, grab some of my special food for the day (these appointments require 3+ hours plus I had an IV treatment at the hospital next door for another 4 hours later on), and focus enough to get myself out the door.  Maybe I should have had Steve drive me to the appointment?

Clearly I was a little distracted.  The purpose of the appointment was to re-evaluate the first month of IV treatments for Lyme disease.  I had first treated Lyme disease 4 years ago and it was a disaster; the next 4 years were spent taking down other infections and toxicities to get ready for intense treatment of Lyme that likely had been underlying ongoing health issues for a very long time.  The process has been most difficult.  I would learn in this appointment that the burning in my forearms that occurred during the past 5 infusions of the antibiotic (Rocephin) had caused superficial phlebitis!  All I knew is that they hurt.  More treatment recommendations would follow to add to my already complex treatment regime.  Everything came clearly into focus when I saw that beige-n-brown Dodge Charger sitting alongside Auburn Road.

As soon as I saw him I knew that I was in trouble.  That’s the color of the County Sheriff vehicles and I was traveling 14 miles per hour over the speed limit!  I thought I was only 9 MPH but unfortunately I did not see the traffic sign until my trip home!  He followed me for a block or so before turning on his flashing lights.  I sat stunned by the side of the road.  The Sheriff turned out to be friendly young lad, albeit dressed in his intimidating finery.  He recognized my last name and asked if I knew someone that he did by that name in another town?  Nope.  I could hardly speak.  “May I call my Doctor’s office?  I am running late for an appointment,” I asked.  “Sure,” he replied as he took my ID cards and walked back to his beast on wheels.  If he was friendly did that mean that he would have mercy on my story and not give me a ticket?

Nope again.  The “icy” conditions warranted a citation.  He spouted off more instructions than I could understand then left me with a cheap ticker-tape style TICKET.  All I could do was pull over onto a local street to gather myself to figure out what to do next.  The Doctor’s office finally answered their phone, apologized for not picking up earlier as they were short-staffed and stated that the Doc was running 1 1/2 hours behind schedule (as usual!).  “Would I like to leave my phone number for a call when they were ready?”  Sure, no problem I thought to myself . . .

Somehow I managed to contact my hubby at work and return home.  The struggle to leave the house earlier that morning resulted in a very expensive speeding ticket with funds earmarked for adjunct treatments not the county coffers.  I was upset at myself and upset at this wretched illness.  I was guilty of speeding.  I had not even looked down to see how fast I was travelling.  Driving a truck makes you a little over-confident in inclement weather and that false sense of security had caught up with me.  Gee, did he also notice that I still have a quarter of the bed of my truck filled with dirt, plants, and sod pieces in the middle of winter?  Perhaps not.  The pile has already begun composting into a fertile loam on sunny days!  They should make a nice, top-dressing the vegetable bed by Spring!  Maybe I’ll just leave it in there?

Sigh.  Life goes on and sometimes the State trooper is the one to remind me of this.  Regardless, if it really does get to 57 degrees tomorrow (on February 19th!) I will be digging some, Lord willing.  There’s much to do and the IV treatments are helping me feel some better.  Besides, I have a lot more room in the bed of my truck that needs to be filled dontcha know?  You can never have too much of that “black gold” stuff anyways.  :JJ

compost, gardening, truck, Nissan Frontier, garden, load, dirt,
How the professionals load compost!

 

Weary from the road

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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!

From the side of the bed

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8th Anniversary 11.24.15
Celebrating our anniversary November 24, 2015

 

2015-11-28 23.11.54
Sick in bed November 27, 2015

He has seen it all

My beloved, the one with soft blue eyes;

In the medical facility or on the road as we pass across the miles

He looks to me with a precious love that makes me swoon all the time.

It doesn’t matter my status that day:

The screams of terror, the gentleness of a warm embrace,

He just looks at me as if we were lying under a canopy, shielded from the hot sun

By the lush branches of a mighty oak one summer’s morn along the way.

But that is not what has gone before me once again these past 3 days and more

His vacation was spent caring for me in ways neither one of us would choose.

He steps forth to do what must be done just the same

And says of our time:  “we had a nice week now didn’t we?”  I guess so, maybe in some ways we did my love.

I sigh in awe, something short of disbelief.  How did love like this find its way to this place between us?  This bed is marked more by sickness than passion night after day after night?

Surely it goes beyond that which either one of us can see!

This walk was borne from the One who made us thus and so

The One who set this path for goodness, for purpose yet unknown.

While wasted days is all that I can see very, very late this night

(With tensions mounting, wills weakening under the weight of it all)

I see that my Heavenly Husband carries our hearts with His special sip of tenderness

Bringing sweetness to our lips when we need it most as he has so many times before.

From the side of the bed

I look up and know more than my Love,

Surely I humbly receive care from more than the one I can see.

Thank you Jesus for my Steve.  Thank you Jesus me loving so!

So if ever you are graced by a love like this, dear Reader, and I hope someday that you do:

Hold tight, hold fast with praise, with alms beyond your brokenness to discover what the Lord alone can bring.

For you are witnessing more than a miracle in the midst of hurricane:

You are finding grace that will see you through anything, truly, truly with love I say this to you.

JJ

Treatment Update

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outnumbered

The concept of negative numbers to me is as mind-boggling as that of anti-matter.  If something can be measured on an integer scale then I suppose the values could go up just as easily as they could go down.  But when they go below zero, which is nothing, how can anything be less than nothing?

Perhaps the answer depends upon to what subject the scale is being applied.  Ha!  I would love for my personal scale of symptoms to be at zero.  I would love for the intangibles wreaking havoc in my life to be less than nothing as well.  But that is just not how it is.  This past Fall was very bad, indeed.

More days this past Fall than any other time since I got sick over 4 years ago, did I write “Sick Day” on my calendar as the activity that characterized the entire day.  That means that over 8 daytime hours were spent in bed due to an inability to perform any goal-directed activity:  about 3 days each week.  That stinks.  I had three trips to the emergency room when exasperated with noxious symptoms, more variety in the traumatic nature of seizure attack episodes, an increase in triggers of episodes (which were unclear more of the time), and less ability to perform my activities of daily living.  Steve had to physically care for me (from toileting to feeding) about four times each week.  This year was the first time that I was unable to complete both my Spring and Fall clean-up chores for our gardens.  An occasional meal out with Steve has ceased.  There even was a blow-up with my Doc in which he suggested I might work with someone else.  He admitted that he doesn’t know what to do.  Fine.  But who else would that be?

So here is my status:

  • Results of blood tests and stool tests are now pending to identify microbes that may be keeping me from getting well.  Flare of systemic Candida is one possibility.
  • Chronic Lyme disease is back on my radar as a possibility so for these first two items I have started to take an anti-microbial supplement every day.
  • Mercury burden is significantly reduced yet its role in ongoing illness is still unclear.
  • Dehydration is a daily battle regardless of how many fluids I ingest or receive via IV.
  • Continuous daily seizure attacks total 2 to 5 hours every weekday and often increase to 8 hours at least one day per week.
  • Social isolation continues to be a problem.  I am grateful for a weekly Skype Bible/prayer time with fellow bloggers and may add a telephone support group soon.
  • An extremely restricted diet (sugar/sweetener-free, dairy/mold/gluten-free, low oxalate/copper/meat) only becomes more restrictive as time goes on than more permissive.  There are often episodes after eating and I do not know why.
  • Physical therapy has generally helped to reduce neck and other pain yet the 30-minute convulsive episode at the end of nearly every visit is burdensome.  I bring my own sheets and graciously they avoid fragrances around me.  They are saints!
  • Generally I am only able to leave the house for medical appointments, grocery shopping, etc. twice per week, remaining homebound the other days.  Recent exceptions:  two wakes!
  • Physical exercises and activities, including my P.T. home exercise program, are rare due the likelihood of triggering episodes.
  • Travelling, even with our super clean travel trailer, increases sickness too much to bother for awhile.  Setting it up takes me 3 weeks and cleaning it afterwards takes 3 weeks as well!  Oy vey.

So now my pity party is over and I have nothing left to say.  I am praying constantly for the Lord to keep my heart from bitterness yet I fear that I am losing the battle.  Crying comes forcefully during the setbacks and I am concerned that it is more a manifestation of illness progressed to my brain than true grief.  My husband Steve carries the burden of all of this in his own way.  He is a saint and my hero.  Thankfully he has a great support network at church and work, his athletic activities, and lots of social outlets to keep him going.  Steve is an amazing man surely one after the Lord’s own heart.

I am hopeful that the anti-microbial treatment will help me; sometimes it even stops the episodes.  Yeah God.  However I am very stressed about the upcoming holidays.  Maybe there will be a “Christmas miracle” at our house too?  Lord willing, the numbers in my life will improve in a positive direction.  In the meantime I will be hanging tough.  It’s the best I can do.  JJ

senior numbers

When there are no words

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“Look up.  Look waaaaaay up,” were the words of The Friendly Giant in 1986.  This American children’s television host invited the viewer into his miniature living room where he pulled out a chair just for you by the fireplace.  Then an image of his fake leather boots appeared 10x the scale of the scene on the television as he invited little Sissy or young Bobby to follow the camera up to the smiling eyes waiting to tell a story, waiting to introduce you to a host of characters.  Rusty the Rooster was a silly-looking puppet yet their banter held my attention all the same.  Even though by 1986 I was not a kiddo anymore!

We often look up to see the wonder beyond us:  gazing at the twinkling stars so visible in the crisp Fall air or maybe oooing and ahhhing at the bright ornaments adorning the department store Christmas trees already on display before Thanksgiving.  There is something magical about a beautiful sight just beyond our gaze, just above our smaller human frame.  When that object is but ordinary the wonder may be less yet the opportunity to reflect may be just as profound too.

The ceiling above my bed of sickness holds much thought these days.  On a Monday I might see a simple popcorn ceiling in the same building contractor’s white paint of every home built that very year.  A few days later it may be the seam tape of the electrical lines painted to match the composite panel lining the roof of an aluminum travel trailer.  Two months ago it was a bright blue shade sail floating softly up, gently down above my patio chair when the weather was still sunny and warm.  Such simple forms that served to give me pause from the mayhem of the hours that dragged on before . . .

shade sail patio summer 2015

Times like these are best spent dwelling in the presence of the Lord.  No words fill my mind in those kind of moments.  The tears are already spent; the energy almost completely drained away.  Such is the aftermath of uncontrollable seizure attacks that plague my weakened frame day after night after day for hours without end.  The pattern continues despite new anti-microbial treatments, tests, consultations, prayer, tears, strategies new and old.  New pains come and find a way to stay.  There is nothing left to say.  There is nothing left to do but to dwell, I guess.

Even love can be like this I suppose when it hurts so bad and you still can’t seem to shake the pain away.  All you do is focus on the form that you knew or still know that stands in front of you when only a blank slate emptied of your future together remains.  Turn to the left, turn to the right, stand up, sit down, and unlike the cheer song at the football games in 1986, there is no fight!  Fight!  FIGHT!  when love goes away for good.  Oh how I long for the familiarity of the pains I had known long ago.  It would be so much easier to handle than the emptiness of my heart this night.  Yup.  The joy is gone!  Gone!  GONE!

So what’s a middle-aged gal to do in the middle of the night and there is nothing to look up to anymore?  When I have written more words from every angle that my heart can imagine and no new inspiration comes to fill the page, gosh, what will I do?  Not much, really.  Just wait I guess.  Tomorrow is a new day and it will be here before you know it.  Maybe something good will happen, eh?

In the meantime, won’t you hang in there with me?  Here, I have pulled up a chair for you too Gentle Reader.  The Friendly Giant is now known as Immanuel and has a special story to help us end this little time together.  It’s a great read for a bedtime story at any time of the day, I promise.

I do hope you enjoy it.  JJ

Psalm 121