Tag: hope

When the healing comes

Published on by Jesus is for the Wounded2 Comments

Sure has been a wild ride of late.  Here’s a treatment update.

After almost 4 months of treatment, I have improved 28 points on the Multiple Systemic Infectious Disease Syndrome Questionnaire of Lyme Literate Medical Doctor (LLMD), Dr. Richard Horowitz!  Thank you Jesus.

Lord willing, later this week I will transition from IV infusions of antibiotics from an outpatient clinic to home health care.  Our insurance company denied treatment beyond 28 days, leaving us with a massive bill if my secondary insurance will not cover ongoing treatment.  Since it will take several weeks to find out the verdict, we cannot keep paying $900 per treatment, 3 times per week while we wait!  Hiring nurses (from a home health care agency and one in private practice) on a private pay basis plus ordering supplies and medications online will reduce the price to around $300 per visit.  Planning this transition has required considerable time, stress, attention to endless details, and work!  The orders are in process with many steps to follow in the next 2 1/2 days.  A LOT HAS HAPPENED IN THE PAST 5 DAYS to make this happen.  Thank you, Lord, that my brain has come back online just in time.  Whew!

I just found out that DNA testing from Fry Labs shows that I do have the FL 1953 protomyxzoa rheumatica (a fungal infection) that can be found in 50% of patients with chronic illness.  This parasite survives in the body in the impervious gel-like biofilms that also make Lyme bacteria difficult to eradicate.  My LLMD has recommended a combination antifungal (prescription) and biofilm-busting (nutraceutical) protocol that he says could render me very sick for a minimum of 4-5 weeks.  Most patients have tremendous recovery thereafter; gratefully I am hoping that the binding agents I have discovered will be an effective adjunct to this treatment plan and reduce the die-off or “herx” reactions.  Steve and I are prayerfully considering how to proceed as we were hoping to visit family for an important event out-of-State in a few weeks now that I am “not as bad.”  Please pray too!  I am soooooo ready to start living again!

Working with a brilliant naturopathic physician via Skype to review my epigenetic data, lab tests to date and medical/treatment history has finally led to some nutraceuticals that I can actually tolerate.  Soon I hope to add specifically formulated IV and injectable nutritionals to the home infusions (instead of driving to a clinic we were considering far from home twice per month).  And the excitability of my central nervous system is starting to come down at last:  generally fewer and shorter convulsive episodes every day for the past 2 weeks.  This has not happened in the past 4 1/2 years until now!  PRAISE THE LORD!  Experimentation with an Iodine Loading Protocol has further enhanced my results.  I have to think that I am on the road to recovery at last . . .

Steve and I are encouraged, humbled, grateful, and watchful as the events of these past few weeks have unfolded.  I have been able to get out for a walk once per week and work in the gardens around our home some.  Some of the pain and headaches that I battle every day have improved; I don’t really complain when it’s related to digging in the dirt as the sun is going down . . . I feel blessed to have had the friendship and support of a couple of friends here for rides to-and-from the hospital for treatments lately too.  And we are starting to plan some of the activities again that we used to take for granted in the past:  think Steve’s kayak races, the Tin Can Ranch (travel trailer), and the pup in tow as well.

When the healing comes by Lisa Bevill

Enjoy this lovely song that reflects the hope that is becoming clearer for me.  I hope that if you are struggling, you will lean on the Lord, Jesus Christ to see you through and keep your eyes on the goal what ever that may be for you.  He knows and loves you, cares for the desires of your heart too, Gentle Reader.  There are sprinkles of His goodness all around us no matter what the circumstances.  Let not the first time we recognize this as only when the healing comes.  Let today, this moment be a reminder that the waiting, the “pressing on” as Lisa sings, is an important part of the journey too.  Praying for you this night.  JJ

A missed opportunity to minister

Published on by Jesus is for the WoundedLeave a comment

James 1:2-8 (NIV)

2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. 5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. 6 But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.

Perhaps it is a weakness in my character that requires refinement?  To witness the love of Christ to others in our times of trial serves as both a powerful witness for Christ and perfector of our own faith.  Heck, with the amount of suffering I have endured, I don’t want any of it to be wasted.  Or repeated!  So today I wonder if it is possible that I have missed one particular situation of opportunity:  the Emergency Room.  Finally my broken heart has calmed down enough to consider the possibility . . .

Ten times I have landed in the ER in the past 4 1/2 years.  The first time was at the beginning of this illness with the viral hepatitis that started it all.  The next nine trips were all for wretched, continual seizure attacks that would not stop.  Most times the ER Docs could get them and the pain that accompanied them to stop with a combination of fluids and some kind of medication.  Often the medication made me worse.  Usually I would walk out of there about 5 hours later as a beaten puppy with an exhausted husband faithfully at my side.  And sometimes I even got a break in the convulsive episodes for some of the subsequent 24 hours.  This became less true with each subsequent visit.

Twice during my severe distress, barely able to punch out a few words when having difficulty breathing and my “brain on fire,” I have sworn at the person who I thought was not helping me.  Not cool.  Even a person with Tourette’s Syndrome or senile dementia has some responsibility to try to find reasonable means to communicate his or her needs.  My frustration got the best of me and I forgot who I belong to in Christ.  I forgot Who was in charge those nights in the ER.  I forgot who allowed these refining fires into my life for my highest good.  I lost the image He gave me of His tears as He hung from the cross for me.  I ceased to remember the gifts, the crown of glory that awaits those who are in Christ Jesus.  I certainly did not remember that even these ugly things were working together for my good (Romans 8:28) even when amongst the staff at the hospital.  And my witness for the One Who saved me was tarnished for sure.  In my own strength, I failed to get my needs met and failed to minister.  We left this past Friday night with me weeping, still seizing, and unable to walk . . .

Sure, I am human:  weak, limited in strength and in power.  I pray and my husband prays continuously for all aspects of this illness.  I submit to the will of Christ.  I could also describe for you the victories, the growth, the good things that have happened amidst the traumatic.  For example, Friday night after an IV treatment for chronic Lyme disease was supposed to be for salvaging what remained of my birthday.  That did not happen when I spent the evening in the emergency room.  I was sick all day on Saturday and Sunday.  Even so there were sweet gifts at dusk on each of those days and in the morning on Monday when I got to work in my garden again; for that I am grateful.  My spirit soars out there dontcha know . . .

Here is the scripture that is convicting me on a Tuesday.  See if you can follow where my heart, where my spirit has led me:

2 Corinthians 6:4-10 (NIV)

4 Rather, as servants of God we commend ourselves in every way: in great endurance; in troubles, hardships and distresses; 5 in beatings, imprisonments and riots; in hard work, sleepless nights and hunger; 6 in purity, understanding, patience and kindness; in the Holy Spirit and in sincere love; 7 in truthful speech and in the power of God; with weapons of righteousness in the right hand and in the left; 8 through glory and dishonor, bad report and good report; genuine, yet regarded as impostors; 9 known, yet regarded as unknown; dying, and yet we live on; beaten, and yet not killed; 10 sorrowful, yet always rejoicing; poor, yet making many rich; having nothing, and yet possessing everything.

Such is the opportunity for ministry of the Gospel of Jesus Christ for those who suffer.  It’s not all about us.  My Lord, help me in your grace to use the witness of Your own life and the apostle Paul who wrote these words to strengthen my own ministry in times of need for your glory.  I have failed and want to do as You would have me do no matter what happens to me.  Please strengthen my beloved Steve as well.  Thank you for his care, love, and companionship in the best of times, the worst of times.  Bless him oh please.  He has been so good to me.

1 Peter 5:4, crown, glory, submit, His will, crown of glory, thy will be done, purpose, suffering, hope, Jesus Christ, reward, heaven

 

 

From one mystery to another

Published on by Jesus is for the Wounded1 Comment

Just when you think you’ve finally gotten on the road to something good the path can be blasted with a tempest beast of a hurricane, sending you smashing to the ground without a life preserver or anchor!  But do not despair.  The Lord Jesus Christ is still on the throne precious one.

Isaiah 55:8 New King James Version (NKJV)

8 “For My thoughts are not your thoughts,
Nor are your ways My ways,” says the Lord.

The close of our evening in the wee hours of the morning was exceedingly traumatic, puzzling, and desperate.  This sure is a mystery given that I have had some better blocks of a few hours at-a-time now that I am 3 months into IV treatments with antibiotics for chronic Lyme disease.  Even an iodine protocol and infrared sauna treatments appear to be promising adjuncts to my treatment plan.  Ahhhh, so much progress has been made these past 4 1/2 years yet still there are plenty of wacky lab findings:  we’re talking dangerously low amounts of key nutrients,  hormones, and healthy gut bacteria.  Yet I have less pain some days, improved clarity of thought, and an ability to do some housework or gardening about once per week.  The days largely spent bedbound have diminished from 4 to 1!  And my score on a chronic Lyme symptom scale has gone down from 73 to 46.  These are good!

James 1:2-4New King James Version (NKJV)

2 My brethren, count it all joy when you fall into various trials, 3 knowing that the testing of your faith produces patience. 4 But let patience have its perfect work, that you may be perfect and complete, lacking nothing.

Some call setbacks that occur over a course of treatment “herxheimer” reactions.  I call them a “healing crisis.”  That is, until the particular breed of hell is so traumatic that extra healing is needed from the crisis itself on top of the serious illness.  I’m talking about seizure attacks marked with screaming at the top of my lungs.  Let’s add writhing movements lifting me off the bed as if embodied by a demon and intense, hysterical episodes of wailing with gushes of tears.  What the heck is going on here?  Flashes of terrifying scenes fill my “mind’s eye” alternating with the blackest darkness you can imagine.  I press into the abyss with cries out to my beloved “Jesus” when I can, when I my mind allows me to do so.  He is my only hope.  Prayer mixes with shock.  Breathing, prevention of injury, and concern for my hubby nearby fill any cracks in my thought processes when they return.  Steve and I both leave the scene broken when the hell finally stops (tonight after over an hour had punched its way by us).

This all means that chronic/neuro Lyme disease is in my central nervous system and brain.  This probably means that the treatments are now changing my neurochemistry and affecting the structures of my mind.  This definitely confirms my worst fear that the path out of this hell to healing will be worse than the journey that got me here.  So wretchedly sad.  I guess I’ll just pray that the Lord strengthens me and Steve to get through it, pleading for mercy as we did tonight.  Somewhere out there will be a message to inspire others yet again tonight that is not the case.  This is a murderous mystery, killing every sense of sanity and magnifying many senses of suffering.  I am o.k. in this moment, thankfully.  It’s amazing what I can do sometimes on 2 hours of sleep just before the sunrise.

Psalm 119:147-149New King James Version (NKJV)

147 I rise before the dawning of the morning,
And cry for help;
I hope in Your word.
148 My eyes are awake through the night watches,
That I may meditate on Your word.
149 Hear my voice according to Your lovingkindness;
O Lord, revive me according to Your justice.

Hang with me, Gentle Reader.  We are not giving up.  We still have faith and still have hope.  You don’t give up either with the challenges in your life too, k?  We are holding out with the hope of blissful eternity for those in Jesus Christ and working our way back to the current day from there.  The suffering, the trauma, the horror just makes for a better ending when telling a magnificent story.  And when in my mind’s eye I also see the tear on the cheek of my Lord as He hung dying on a cross for me and you, I know that somehow, supernaturally, I will be delivered to a better place someday.  How about if we meet there?  So much goodness awaits us.  I’ve really got to tell you about the Summerwine bush that is budding from where I transplanted it to my compost pile, ready for its new home this Spring . . .  Someday it will burst forth into bloom (like me) once again!  JJ

summerwine, horticulture therapy, healing garden, healing, plants, deciduous, bushes, ornamental, flowering, blog, hope

 

I learned it from Charlotte

Published on by Jesus is for the WoundedLeave a comment

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

Published on by Jesus is for the WoundedLeave a comment
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