Tag: Christian

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

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!

 

So much to consider

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Phil 1:12, Philippians, trials, suffering, endurance, Christian, crisis, long term, illness, chronic, humor, gallows12 But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.”  Phil 1:12

Just as this picture and this scripture present two extremes of perspective for the activities of life, they are united in one theme:  we shall rejoice with Christ as our guide!  Yeah, I know that is a stretch . . . but we do know that the God of the universe has a sense of humor too, right?  I mean he created aardvarks, zebras, and tse tse flies!  What’s up with that?  Oh I know that the Original Adam named them all but just how did he do that?  They were all such weird creatures!  So it follows then that humor can help us endure many kinds of extremes, even the ones you and I are facing today.

Take for another example the thieves that attempted to steal gasoline from an RV.  This is a true story:  instead of tapping off the gas line they ended up tapping off the septic line instead!  When the fluid started flowing it was not fuel it was the polar opposite:  stool!  So sad.  Such a righteous punishment I must admit!  And as a grateful owner of a travel trailer all I can say is:  Tee hee with a smirk.  ;}

I cannot say that I can relate to the paradoxical themes of life with much right now with much lightness of spirit right now, however.  I’ll just keep it simple:  there’s some good and there’s some that is not.

On a good note I am grateful to report a widening of social contacts of late.  I’ve reached out to some old friends and some newer gals have jumped back into my world from my local church.  I appreciate the friends that I’ve met online (and you know who you angels of mercy are) and hope we can extend our fellowship.  All of this is good.  It’s amazing how all believers in Jesus Christ share a common unity even when the circumstances of our lives can be so different.  We all have our daily wants and needs; our Lord cares for the desires of our hearts tenderly and for these we can pray in earnest for one another.

On a less good note, new I.V. antibiotic treatments for chronic Lyme disease are going quite roughly.  Yup, revisiting Lyme since the persistent seizure attacks sure look like the episodes of others dealing with the neurological complications that can happen long after the acute infection has come and gone.  It was 4 years ago that I first started treatment for Lyme when things got sidetracked for treatment of mold and mercury toxicity, dental issues, Candida, parasites, and a possible oxalate burden exacerbating fibromyalgia pain.  Use of a Rife machine brought daily seizure attack episodes and treatment of Candida escalated them from 2 to 5 hours of convulsive episodes per day!  I was bedridden the better part of about 4 days each week this past Spring, Summer, and Fall.  So beginning in January I was started on high doses of IV Rocephin (antibiotic) and I remain sickly but out of bed more of the time.  This treatment coupled with the wintry temperatures below freezing have brought incredible pain.  However, the days that I am up until daybreak every night of the week has cut down; tinnitus, brain fog, and other executive functioning skills are sloooooowly shifting for the good.  Sometimes even the pattern of convulsive episodes shift as well (thank you liposomal melatonin!).  Just maybe these past 4 years have not been wasted after all!  It appears that each new treatment has prepared me for such a time as this:  we just might be able to treat this remaining beastly diagnosis and its co-infections to get well . . .

There is so much to consider.  Will I continue on antibiotics long term?  Will my health insurances help us out or cut us off next week?  Will I be able to get a port to spare my aching skin and forearms from repeated pokes and dressings that trigger more wretched episodes?  When would I transition back to more herbal-with-pharm-grade supplemental interventions?  Will the reactivity to mold and fragrances ever come down or do I have to go live in a pristine environment somewhere for a few months later on to fully detox?  How much more stress can my beloved husband, Steve, be expected to bear?  And how will we pay for all of this?

As the frigid Winter temperatures of the Midwest bring more of a sense of retreat than charging forth into the unknown, we are choosing to press on anyways with my treatment for chronic Lyme disease.  I just wear long underwear everyday to keep warm!  We are starting where we are with a local, Lyme-Literate Medical Doctor who has treated dozens and dozens of cases successfully.  I know that to be true.  I have met many of them when we had a local Lyme disease support group.  I noticed that each of us facing this dreadful disease had chosen a somewhat unique path to his or her recovery based upon the damage the infection caused to our bodies and our individual resources.  (See this link for more info on chronic Lyme.)  Perhaps my case was one of the more severe.  Perhaps the Lord had more than “recovery” in mind when He allowed this serious illness into my life.  There is so much to consider that simply was not on my radar over 4 years ago.

If you have found this blog by way of your own journey through chronic Lyme disease or some other serious illness, know that I am praying for you.  There is hope!  You are not alone, Gentle Reader.  Please comment below and allow me, if you like, to connect you with a larger community of those finding meaning beyond his or her diagnosis.  Our Lord, Jesus Christ, grieves for your suffering, your fear, your broken heartedness.  He sees you and will see you through what you are facing as He has done so for me and Steve.  He loves you more than anyone (including the furry pup above who has found his prize squirrel in the sunshine of a better day).

May we both smile some day in the arms of our Heavenly Father for having connected this day, for His glory.  And, um, when we get our prized prey I’ll just say, “please pass the catsup.”  Squirrel on the Bar-B-Que anyone?  Ewwwwww!  :JJ

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!