Tag: chronic illness

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!

 

A different kind of Christmas

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Perhaps it is a sentiment of many Dayspring and Hallmark greeting cards to define Christmas as “the most wonderful day of the year.”  For a believer in Jesus Christ, the day is one of the most meaningful:  celebrating the birth of our Lord and Savior.  But perhaps the most significant holiday is actually celebrated on Easter Sunday as we recall the sacrifice that Christ made in dying on a cross for our sins such that we may have everlasting life.  No sentiments are implied or required:  the truth is that He came to save, the truth is that He is Lord of all!

Isaiah 9:6-7New King James Version (NKJV)

6 For unto us a Child is born,
Unto us a Son is given;
And the government will be upon His shoulder.
And His name will be called
Wonderful, Counselor, Mighty God,
Everlasting Father, Prince of Peace.
7 Of the increase of His government and peace
There will be no end,
Upon the throne of David and over His kingdom,
To order it and establish it with judgment and justice
From that time forward, even forever.
The zeal of the Lord of hosts will perform this.

I can almost hear the victorious singing of Handel’s Messiah in the background as I read these words.  Such is the confidence that we have, the joy we know as believers in Jesus Christ!

Many days when my life is a “nothing burger,” these words are just about all that I have for comfort.  My Christmas and Easter in 2015 were not filled with either the people or activities of a typical Christian holiday.  There were no church services dressed in better finery, homemade treats enjoyed in the basement afterwards with the dearest of friends, or family dinners filled with laughter and much feasting.  The décor around here was the same as it is every day.  I could go on with all that was cut due to the ravages of severe illness but I won’t.  Perhaps you get the idea Gentle Reader?

I spent each of these holidays staring into nothingness for much of it yet also with nothing to distract me from seeking the face of my Lord.  My prayerful meditation was uninterrupted and peaceful.  Warm, loving glances came from my beloved Steve whose presence is one of the greatest gifts I could ever ask for in my life.  Even our furry friend Elle is always a special delight with the gentlest of brown eyes, the softest of fur coats.  I did get somewhat of a break during the middle of the day on Christmas in which we connected with family via Skype and the phone, MacGyvered a tasty meal of sorts, and opened some sweet gifts for our eighth Christmas together as husband-and-wife.  Yeah God for special moments like these!

In two days we will continue and conclude as many of these traditions as we can in a gathering with my husbands adult children and their spouses.  They graciously will attend to the mold/fragrance-avoidance practices needed for me to host them in our home.  Since it may be my only time to see them when they are in town from their respective States and countries, I do pray that I may be able to participate in every moment available.  They are wonderful young adults and I do love them so!  I have simplified our menu and Steve has begun the preparations.  We have spent extra time finding special gifts that would be meaningful; one of them may even serve temporarily as a different kind of “Christmas tree!”  We’ll see.  I still have to pull that one together!  Eeeek!

So if you too have changed things up a bit for this Christmas season, know that you are not alone.  I understand completely.  It’s o.k.!  This holiday along with Easter in the Spring have nothing to do with Santa and the white bunny carrying chocolate eggs.  These special days have everything to do with a decision we each make in our hearts about Who we will serve as Lord over our lives.  Where have you placed your trust dear friends?  With a personal relationship with Jesus Christ, we will have a celebration that will never be limited to a date on the calendar.

Charlie Brown Christmas
Nothing beats a Charlie Brown Christmas message:

And with that decision made to follow Christ, every day will be a different kind of adventure that transcends the moment into all of eternity.  Yeah, I’m on board for that one.  Will you be along too?  JJ

It’s just not my turn that’s all

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Another day slipped into history as I pondered the gratitude I felt for a recent task accomplished.  It’s no matter that the wrapping of Christmas presents got done from about 2 to 6 in the morning on Saturday.  That’s just how I roll these days . . .

Social media is one of the ways that I employ to counter the tremendous isolation I experience while overcoming a serious illness.  I used to be shy about it.  Many folks write about their need for a sabbatical occasionally when Facebook and the like become too big of a time eraser.  My life is structured differently I guess . . .

My brother, Michael, often talked about the support he felt from fellow poker players online.  Really?  How can you experience anything valuable from an anonymous side chat in a gambling venue of penny poker through the internet?  Flash forward ten years.  Now I get it.  Mike was home all of the time caring for our mother who was struggling with lung cancer, chemotherapy, and alcoholism.  The things that he endured were very difficult.  He would say that he never knew what he would find when he returned home from running out to the store or anywhere at all, making it difficult to get things done.  Those little touch points with his fellow poker players gave him the assurance he needed to do what he had to do the rest of the day . . .

Should life return to “normal” one day for me then my time spent here with you will naturally diminish.  I’ll be sleeping in the wee hours of the morning instead of wide awake in the recovery phase of a hellish nightmare earlier that evening.  I have already grieved about it, the loss I mean.  So much time has passed with so little getting done in my own life.  Perhaps the tasks that have been completed are not measured on a calendar or my “To Do List?”  For those in Christ Jesus, we know that to be true.

Romans 8:28, encouragement, encouraging scripture, all things work together for good, hope, hang in there

Another example is how I finished reviewing a copy of a canoe and kayak paddling magazine last night for which my husband is the Editor.  I guess I can now add “Assistant Editor” to my resume for my contributions to the first four issues.  Cool beans.  I could list a bunch of crafty Christmas things that I would rather be doing yet that was not my calling for those hours.  Many will be blessed by this sacrifice including me.

Ever feel this way when sidetracked from your dreams, Gentle Reader?  In ways big and small we may struggle to discipline ourselves to do the tasks we must do when our hearts are in another room or time zone.  Know what I mean?

The bottom line for me on this subject tonight is that the sooner I rest in the promises of my Lord and Savior, Jesus Christ, the sooner I will realize that I am perfectly where I need to be.  He will provide everything I need from the breath that is not coming easily to the assembly of a Christmas gift still in boxes strewn here and there.  I know from another tumultuous time in my life that the Lord does answer our prayers in due time.  The waiting, the setbacks, the anticipation make the rewards sweeter.  How can I expect to make it to the finish line with style and grace if I give up on the last leg of the race?  I will not!

So don’t you give up on me either, k?  And please hang tough if you are going through challenging times as well.  If you need to cry out for help then please do so NOW.  Our God promises in His Word that:

3 The Lord will strengthen him on his bed of illness;
You will sustain him on his sickbed.

Psalm 41:3  New King James Version (NKJV)

He will see us through to our last breath if we but call upon His name.  My Heavenly Father has done so for me a thousand times.  He will do so for you too.  Tonight I am praying for us both.  JJ

Dog in bed

A Plausible Case

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As you may have read in the About Julie page of this blogsite, I treated for Chronic Lyme Disease early in the four years that I have been battling serious illness.  I had not recovered my health four months after a bout with viral hepatitis and our Family Practice Physician convinced me and Steve that latent Lyme disease was keeping me sick.  Then the story changed a few times . . .

Treatment for Lyme disease, Candida, mold exposure, mercury toxicity, gut parasites, and infected root-canaled teeth has still left me with the following symptoms four years later:

  • Hours of daily convulsive episodes, every single day
  • Headaches
  • Painful shoulders, forearms, hips, neck, jaw, and more
  • Ringing in my ears
  • Multiple severe chemical, mold, and sound/light sensitivities
  • Significant nutritional and hormonal deficiencies
  • Fatigue
  • Episodic cognitive and emotional setbacks
  • Periodic night terrors, nightmares, waking terrors
  • Weakness and deconditioning
  • Air hunger and chest compression symptoms
  • Neuropathies
  • Severely disrupted sleep/wake cycle
  • Food sensitivities despite a restricted diet
  • Gut dysbiosis
  • Inability to consistently perform activities of daily living or work
  • Social isolation
  • Intolerance to treatment

So in other words, my life is kinda hellish a lot of the time!  Today was no exception.  Then right in the middle of the trauma there were tender encounters with the sweetest man on the face of the earth:  my Stevers.  We talked in between seizure attack episodes, he provided care when I could not move, and we made the most of a low-key day.  It was the “same story, different day” around here.  And something else happened too:  I may have discovered another piece of this wretched illness mystery:  Latent Lyme Disease can affect the gut which in turn can contribute to neurological complications much like the ones that have eluded all of our attempts at recovery.

No, it’s not systemic Candida as I suspected when I wrote my last Treatment Update.  It’s called “Bell’s Palsy of the Gut,” a term coined by Lyme Literate Medical Doctor (LLMD) Virginia T. Sherr.  “Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians,” states Dr. Sherr in the April 2006 issue of Practical Gastroenterology (p. 74).  There are tests that can be performed to determine the presence of Borrelia burgdorferi along with other microbial pathogens  transferred in tick saliva after a bite.  In two weeks I will have a diagnostic procedure in which these tests could also be performed.  Whoa Lord.  Is that why I felt led to add an anti-microbial to my anemic treatment plan?

God is good.  All the time.  God is good.  Today I felt led to add back a probiotic that I actually was able to tolerate this time.  The new information about Lyme disease may explain the increasing gut inflammation this past year and my supremely negative response to a trial of a far-infrared light treatment to my abdomen.  Or to any abdominal exam.  Or to physical therapy to the hip flexors in the lower part of the abdominal wall.  Or to certain foods.  At any rate, a new door has opened and there are new possibilities for getting well.  Perhaps it is time to re-visit the diagnosis of Lyme disease.

Stay tuned.  This exquisitely wild roller coaster ride of recovery from serious illness is about to reach a new station.  In the meantime, please pass a spoon and 1/2 of a carton of Siggis plain, grass-fed, organic and Icelandic yogurt.  We’re going to get this thing right or keep screaming all the way to the bottom of the next hill until we do!  (I told you that I worked in an amusement park one summer didn’t I?  Yeah, Cedar Point is really cool!)

Cedar Point gatekeeper_wallpaper

 

Somewhere in the World

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Perhaps I have written on this before and perhaps not.  This is still my reality so I will make it a most delicious read for you today!

“It’s dinnertime somewhere in the world,” was the reply of my husband’s sweet daughter, Christina.  Between her and her sister, Rebekah, they have travelled to all of the continents of the world.  They know better than anyone that at any given hour there is someone having dinner.  So when we have dinner after 11:00 p.m., as we do often, her kind words are most reassuring that we would be in good company if seated at a table beyond the borders of the United States of America!

Thursday was Thanksgiving Day and I wasn’t able to start working on the turkey until after 5:00 p.m.  What followed was a whirlwind to make 12 items before I crashed with a full, happy belly!  We had our salad, homemade cranberry relish, rolls, and fixings around 7:30 p.m. then Christina crashed on the couch for a good while (still recovering from a medical procedure the day before).  This allowed me plenty of time to whip together everything needed to finish our meal with Steve on duty to wash-and-rewash the numerous batches of dishes utilized to carry out the tasks at hand.  Thankfully, the Lord added His increase to my weary bones!

The first part of the day had not fared so well.  Read the last blog for a status report of what I am talking about.  Let’s just say that I experienced the same story on this holiday much like any other day.  Sickness rarely takes a day off!  Dang.  Friday was similar except for all of the cooking.  Actually, not much of anything got done on Black Friday and it wasn’t because of a shopping hangover either.  At least I got to spend all of these days with my most favorite person in the world:  my beloved Steve.  We celebrated our anniversary on Tuesday as well, in sickness and in health.  He gets it right!

Thanksgiving 2015
Just Julie’s first homemade pie and pastry from scratch in a long time was a hit!

So if your own day doesn’t go as you would like and you end up baking a pumpkin pie and pastries at 11:00 in the evening hoping to enjoy your dessert before the last few seconds of a holiday, don’t fret.  It’s a sunny morning somewhere in the world and your pie will be cooled enough for your salivating guests just in the nick of time.  True pie lovers require that their drug of choice gets served before the food coma sets in!  As long as it comes with ice cream or whipped cream served on top, we will all give thanks now won’t we?

 

Indubitably, my friend.  Please pass me a fork right now!  JJ