Category: Recovery from Serious Illness: Lyme, CIRS, & More

I learned it from Charlotte

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She was wearing an oxygen cannula 24/7 and needed to take a break to rest after walking from one end of her house to the other.  Having battled breast cancer years ago, she had come into the late stages of another bout of cancer that would take her life a year later.  She was no longer able to leave her home except for medical appointments and did so with a supremely taxing effort.  Too weak to perform all but the most basic of daily living chores, she still had an amazing ministry that reached across the country . . .

Grief Share, friendship, mentoring, older women, younger woman, grief, loss, grieving, fellowship, Charlotte
From left: Julie, Miriam, Charlotte, Mary, and LuAnn from a Grief Share Ministry in 2007

Charlotte prayed for persons that she had found in an online “care” ministry.  These patients had opened up a personal webpage usually when in the hospital to facilitate communicating updates on their medical status to loved ones.  Charlotte searched the database for individuals that spoke to her heart then enlisted prayer warriors she knew via email and social media to pray for them too.  I was in awe of her outreach!  Exhausted from chemotherapy, radiation, or just taking a breath was no deterrent for a woman with a heart bigger than anyone’s I had known.  “I have the time,” is all she would say about it.  And time was her greatest gift as she spent it in the service of others, lifting them before our heavenly Father’s throne of grace.

So when I have been bedridden over the past few years, I have taken on my own version of Charlotte’s prayer ministry.  I pray for everyone I can think of until I can get out of bed again.  I was often amazed that once I got started, the Lord would bring so many names and faces to mind:  persons I had met online, an individual named through a prayer chain, or maybe someone I saw in public when able to leave our own home to go to medical appointments.  “I had the time,” so humbly to pray would be the best use of it.  It has been amazing to me when these instances occur . . .

Today a bunch of folks came to mind during 2 hours of continuous seizure attacks after injections of antibiotics at my doctor’s office did not go so well.  I lain on a hard treatment table in the dark to shield my eyes from the bright lights, hoping that the hell would not go on as long as it had during treatments earlier in the week.  My neck throbbed from the violent shaking, thrashing, odd posturing, wailing, repetitive pulling forward of my flexed torso, and general torture of it all.  (Unfortunately the facet block injection in my neck 3 weeks ago had already worn off!)  Sure, the nurses checked on me every so often; they had seen these episodes many, many times before and knew the score.  There was an agreement however, that if the convulsions persisted they would call an ambulance to take me to the emergency room of the hospital adjacent to their office building.  I doubted if that would do any good.  Would she be making the call the next time she came in the room?  The next time after that?  The total duration had already exceeded 90 minutes which was well beyond our agreed upon period.  “Is there anything I can do for you?” she would ask in plain English.  Sigh.  Not really.

Then she came back again and I squeaked out to yes, please ask the doctor if he could do a chiropractic adjustment on my neck.  It might help stop the wretchedness as it had in another appointment in the past.  Finally another nurse came back with the good news:  the Doctor would see me!  I began to cry . . .  then praise the Lord . . . then pray some more.  Soon my time thrashing about whilst laying flat on my back and mighty sore gluteus media from 6 injections this past week would be over.  I had so much to do later this evening before a surgical procedure tomorrow.  I had better get my time with the Lord in now not knowing how the rest of the day would fare.

Things got better after more gut-wrenching yelps, yells, screams, bursts of hot tears, yada, yada with the chiropractic adjustments and I was finally able to leave the building under my own power about 20 minutes later.  Whoa!  Shell-shocked I had made my way to the bathroom, put on my coat, and gathered my things to leave as if moving slow-motion in a black and white flick from the 1950’s.  But the evening was just getting started so miraculously the pace revved up a bit from there.

Within the hour I would be tossing all precaution to the wind and digging in the garden with our pup chewing a bone nearby!  Whaaat?  Hey, I figured that I’d get the borders of 2 flower beds tidied up knowing that I would likely be on a lifting restriction after placement of a power port in my chest wall early the next morning.  SO I DUG, DUG, DUG LIKE THERE WAS A TREASURE OF GOLD HIDDEN IN THERE SOMEWHERE!!!  Even the darkness and the drizzling rain did not stop me from doing what I love, doing the most that I could possibly do in some sort of a cathartic shedding of my personal hell on the way to and earthly Garden of Eden.  Well, sort of!

Maybe Charlotte would smile at how things turned out for me this evening.  It’s been about 7 years since her passing.  She had an impact on my life for sure.  If she were still around I would give her a call and listen some more to her wisdom that helped transform my life at another tumultuous time.  Well I guess that is happening again dear friend.

Thank you Jesus for Charlotte’s legacy.  Perhaps someday together we will tend to the sumptuous riches in the gardens of our Savior’s wondrous dwellings that You have prepared for us to bask in Your glory one day and forever.

There is so much to look forward to Gentle Reader.  I hope to see you there too.  :JJ

The Missing Needle Nose Pliers

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 flat nose pliers, jewelry making, o ring, jump ring, making jewelry

Husband asks:   Where are my needle nose pliers?

Wife answers after a long pause:  I might have sent them to Minnesota . . .

And then another looooooong pause follows with:  silence!

Sometimes the logic of the moment doesn’t make sense to anyone else but oneself.  Know what I mean?  Hey, I was selling my jewelry business this past Fall and wanted to send along all of the tools that the new owner would need.  I noted that there was a nicer pair of pliers in the tool cabinet so surely hubby-dear would agree that I should make my customer happy to have both pairs needed to successfully open and close jump rings?  Besides, I did ask him about it didn’t I?  He did not remember me asking him.  I did not remember it exactly either.  Well DeeAnn in Minnesota is happily making jewelry and that’s all that counts, right?

Well maybe not.  Within a day I made sure that we picked up for my beloved, a nicer Stanley-branded pair with ergonomic, non-slip grips at Walmart.  Win!  Win?

We employed a similar rationale four years ago when I never really recovered from acute hepatitis.  For more on that story, see the About Julie page here.  It seemed the right thing to do to use an alternative technology to treat Lyme disease when a trial of antibiotics left me wretchedly ill.  Sadly, the Beam Ray Rife machine hurt me, sending me into a tailspin.  There would be no easy solution(s) to this complication.  I developed seizure attack episodes within 3 weeks of running very short programs on the unit which exposed me to various frequencies of light and sound waves.  A dozen or more local folks using their own machines noted benefits.  I did not.  I sold it about 1 1/2 years later with a net loss of $1500 and what has become 4 years of daily convulsive episodes.  This weekend there have been 3 major and several minor wretched episodes within the last 24 hours.  Lord have mercy!

Beam Ray, Rife, sound, light, wavelength, alternative medicine, Ray Rife, Lyme disease
Beam Ray Rife machine

 

As you can read in the link noted above, we have tried many different kinds of valid treatments coached by skilled practitioners.  I have benefitted from taking down mold exposures and illness, mercury toxicity, Candida, parasites, and the extraction of 2 root-canaled teeth.  Even so I feel like a beaten puppy!  But now we know that they very likely are related to Chronic Lyme Disease requiring the use of powerful doses of IV antibiotics for many months.  Seven weeks into the treatment I can tell you that there are some positive changes.  Unfortunately I am having complications from the weekly IV infusions so later this week I will have a port surgically placed in my chest wall.  This becomes a direct-access site without the need for sterile dressings that irritate my skin or superficial phlebitis that has plagued my forearms for about 3 weeks.  (Thank the Lord that I discovered horse chestnut gel when the warm compresses did not help.)  I am also hoping there won’t be any more violent episodes with the treatments. Even intramuscular injections have been exceedingly difficult.  Whew!

So there ya go.  A funny story, an update, and a little hope beyond the saga of late.  Lord willing, I am going to get well!  And when I do I might just get out my own tools here in Indiana, not Minnesota, for digging in the garden.  By the way, Spring weather is forecasted for this week .  Since I won’t be tethered to an IV line I can safely get a little dirt underneath my fingernails if I am up to it before the surgical procedure on Thursday.  The garden pup is ready.  You could say that I’ve traded the needle nosed pliers for an aluminum shovel!  So let’s get to it . . .

I wonder how those carrots are doing that got left in the ground last fall?  Having a little extra time in the soil should make them as sweet as candy by now dontcha know?  :JJ

life began in a garden

Just doing my job

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occupational therapy, O.T., home care, home health, assistant, therapist, accessibility, tub transfer, adaptive equipement, Hope Beyond, therapist heal thyself, tub bench, transfer, gait belt, bathroom treatment, therapy
An O.T. assisting a client in a tub transfer using bathroom safety equipment.

When I was working in my career as an Occupational Therapist, I coined the following phrase to describe my role to my patients and their families:

An Occupational Therapist takes a look at how a person occupies his or her time and the skills needed to get through the day.

This definition worked well, given the diversity of populations, conditions, and treatment interventions utilized in O.T.  Having a simple, quick definition helped me better communicate my 30+ years of licensed and skilled interventions from a variety of treatment settings that might be called upon at any stage over a course of therapy.  Together we then crafted a course of action to get the person back into his or her life as best as possible.  Funny how the person that may have benefitted the most from all of this is the one writing to you this evening . . .

Recovery from a serious illness has been a case of the phrase “therapist heal thyself” coupled with the expertise of a few other licensed professionals.  My part was to study, research, document, evaluate, revise, manage, and just hang in there by my fingernails to get through these past 4 years.  However I will credit the Lord, Jesus Christ for providing the courage and hope that my husband, Steve, and I needed to actually start seeing some progress.  And guess what, it is starting to happen!  The Lord has allowed recovery to begin!

Six weeks ago I began an ongoing, intensive course of IV antibiotics for the treatment of chronic Lyme disease.  In the interim I experimented with liposomal melatonin, 5-HTP (a precursor to serotonin), and now CBD oil (from industrial hemp).  I believe it is that latter that have helped to move my sleep/wake cycle from that of a brown bat to a gal that is just slightly a night owl.  I am starting to dream again and have a little more energy, clarity of thought.  Also the years spent chasing down mercury toxicity, mold illness, dental issues, and secondary infections have prepared me to tolerate this level of intensive treatment.  Are you ready for the biggest change of all?

The two to five hours per day of violent convulsive episodes is diminishing in intensity and duration!  This has been consistent for about two weeks now.  PRAISE THE LORD!!!!!!!!!!

We are thrilled for some positive change in my condition!  We are now hopeful that the powerful doses of antibiotics will help kill the Lyme bacteria and co-infections likely causing the seizure attacks and other noxious symptoms.  Whoa.  So how do I fill my days?  I am continuing my full time job of daily detoxing, preparing  a specifically crafted diet, maintaining a detailed treatment log, medical appointments averaging daily, supportive relationships, study-and-research, medical treatments (some complications came with the IV treatments), connecting online to forums critical to these efforts, the “stuff of life,” and taking a walk at least once per week.  Maybe this week it will be twice?  Yeah God, the pup will love that one!

Like in the past, right now I am just doing my job.  I am grateful that the Lord saw fit to lead me into the profession of occupational therapy as it provided me the skills needed to manage the mechanics of this illness.  Along the way my beloved Steve has been the greatest friend, confidant, witness, and spiritual leader that I could have ever asked for to walk this road with me.  He has labored tirelessly night and day for me, for us.  Thank you Jesus for Steve.  There are many unknowns and many more months of treatment yet to follow for sure.  No problemmo.  With my Lord and Savior at the helm, I will be fine.  Lord willing, I am going to get well!

Just thought you might like some good news from the “Hope Beyond” blog, eh?  Take care Gentle Reader.  And thank you for your support.  You rock!  JJ

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!

 

Into the wintry night a knock cometh at the door

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The gals knocked on our front door unexpectedly tonight from the cold of night.  Do you know where the Murphys live, they asked?  We did not but sure noticed the cheerful nature of these young ladies.  Could they share a special Valentine’s Day message with us just the same?  Of course, answered my husband.  What followed was a friendly banter of the differences between the Mormon faith and a Biblical belief in Jesus Christ alone as Lord and Savior of the world.  It was too cold for the chat to go on long and our home is a safe zone for fragrances-n-chemicals so we could not invite them inside.  They understood.  Gratefully, I was able to locate our neighbor’s correct address before they parted which they accepted after my hubby engaged them in a sweet chat of everyone’s hometown.

Later Steve and I prayed for these two.  Certainly their friendliness and encouraging messages were a breath of fresh air on a chilly wintry night in the Midwest.  They were far from home on their 18-month mission trip rite of passage, so to speak, of their Mormon culture.  We hope that they will look beyond their culture and traditions, however, to a saving faith in the Lord, Jesus Christ who brings eternal redemption and joy through the foundational truth found in the Bible.  We find evidence of our faith in verses such as:

Romans 3:23New King James Version (NKJV)

23 for all have sinned and fall short of the glory of God,

1 Timothy 1:15New King James Version (NKJV)

15 This is a faithful saying and worthy of all acceptance, that Christ Jesus came into the world to save sinners,

Romans 5:8New King James Version (NKJV)

8 But God demonstrates His own love toward us, in that while we were still sinners, Christ died for us.

Romans 6:23New King James Version (NKJV)

23 For the wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord.

John 3:16New King James Version (NKJV)

16 For God so loved the world that He gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life.

In these truths we believe in Him alone as the perfector of our faith, His work on the Cross, and then build the foundation of our faith.  I am proud of Steve for engaging these gals with his personable style and sharing of some key points that we hope they will reflect upon further.  We hope they will find hope in Jesus Christ and not their religion.  In sharing with them, Steve moved beyond standing in frigid temperatures in an open doorway and got into the most serious of conversations with two total strangers rather quickly.  What topic could be more important for a Sunday night chat?

On this Valentine’s Day, I submit to you that the greatest love offering of all was given by our Lord, Jesus Christ when he demonstrated that love through His death and resurrection on the cross at Calvary.  Salvation and eternal life come through Him alone.  May He be glorified for the good that may come for being willing to stand and speak when a knock at the door cometh . . .

Gentle Reader, if you are wondering who God is and how to have a relationship with Him through Jesus Christ alone, please write to me here or comment at the Hope Beyond page on Facebook.  Or just pray this simple prayer and let me know if you do, k?  With love, :JJ

Heavenly Father, I know that I am a sinner and have fallen short in my life.  I am sorry.  I recognize that you are God and came to earth to save me from the ultimate consequences of my sin through Your death and resurrection.  Please forgive me.  Be my Lord and Savior this moment for always.  In Jesus Christ, amen.

cross of jesus