Tag: suffering

Spacey but upright

Published on by Jesus is for the Wounded1 Comment

There’s no pretending when the story gets bizarre.  I mean who could make this stuff up?

As the grace of the Lord has blessed, I am not bedridden thus far in the ramp up of treatment for a serious protozoal infection.  Just headaches, increased convulsive episodes at night or morning, achiness, and fits-n-starts of my ability to function.  While this is certainly awful, I was sick like this every day for the middle years of these 4.5 years of illness so I am kind of familiar with it.  This time we can call it a “herxheimer” (die-off) reaction and temporary!  I am thinking that I have benefitted from a pretty comprehensive protocol that has finally come together:

  • Ongoing IV Rocephin and fluids via home infusions 3x per week for the treatment of chronic Lyme disease, per my Lyme Literate Medical Doctor (LLMD).
  • Weekly injections of a compounded B-vitamin and prescribed nutritional suspension.
  • Weekly injections of a bio-homeopathic treatment for a newly diagnosed autoimmune disease (to start in 2 days).
  • Additional IV fluids now pending to combat dehydration and the effects of the anti-fungal protocol.
  • Supplements to improve calcium trafficking as prescribed by my naturopath and genetic coach.
  • Pharmaceutical grade supplements including an iodine protocol.
  • A switch from filtered water to non-fluoridated, purified bottled water.
  • Anti-fungal and biofilm busting treatment of protomyxzoa rheumatica (formerly known as FL 1953).
  • Continued mold/sugar/sweetener/dairy/gluten-free, low oxalate and glutamate diet.
  • Mineral baths and celtic sea salt supplementation.
  • Detoxification via far-infrared sauna, nutritional binding compounds, and periodic colon hydrotherapy.
  • A fabulous support system.
  • Rest.  Gardening when possible.  Rest.

Unfortunately the bills are piling up as Steve and I go along.  At some point we will need to decide how comprehensive of a plan is really needed long term due to the significant expense when insurance covers virtually nothing.  For now all I can say is that I continue to move in a direction of recovery and we will figure out the rest as the Lord leads.  Our prayers, your prayers are being answered.  Thank you for praying.  Praise the Lord!

 

Thank you Jesus for the hope we have in you and that I can see in my life.  And please bless my faithful husband, Steve!  Lord willing, I am going to get well!  :JJ

Psalm 20:7 (NIV)

7 Some trust in chariots and some in horses,
    but we trust in the name of the Lord our God.

When the hospital comes home

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We all need our spaces, our places of retreat.  Is it that corner where you curl up with a favorite magazine or book?  Maybe there’s an oasis in the backyard, coffee shop, or park down the way that brings a bit of renewal sometime during the week?  Perhaps in a busy household a mother of small children finds solace in the bathroom behind a closed door when sitting for a spell?  During a stressful transition in my life I would drive to downtown Chicago on a Sunday just to “see water” along Lake Shore Drive.  Yes, those moments are precious and necessary for sure.

For those with a special love to share one’s life, the hours alone together can bring refreshment in a whole new way.   Take a moment to enjoy the words of Christopher Marlowe who invites his lover to come hither to a far away place . . .

 Come live with me and be my love,
And we will all the pleasures prove
That valleys, groves, hills, and fields,
Woods or sleepy mountain yields.

And we will sit upon the rocks,
 Seeing the shepherds feed their flocks,
 By shallow rivers to whose falls
 Melodious birds sing madrigals.

And I will make thee beds of roses
 And a thousand fragrant posies,
 A cap of flowers, and a kirtle
 Embroidered all with leaves of myrtle;

A gown made of the finest wool
 Which from our pretty lambs we pull;
 Fair lined slippers for the cold,
 With buckles of the purest gold;

A belt of straw and ivy buds,
 With coral clasps and amber studs:
 And if these pleasures may thee move,
 Come live with me and be my love.

The shepherds' swains shall dance and sing
 For thy delight each May morning:
 If these delights thy mind may move,
 Then live with me and be my love.

The Passionate Shepherd to His Love
Christopher Marlowe

Ahhh, the delight of romance!  Is there any greater pleasure in life?  Well maybe yet perhaps we can agree that there are very few?  😉

During these years of serious illness, my refuge is largely our home.  For now what was once our retreat for romance and the stressors of life has been transformed into a place for a different kind of healing.  Indeed we have created a safe haven from noxious exposures that can make me quite ill elsewhere in the world.  I have become increasingly grateful for the work I had done a few years ago to decorate our dwelling place in pleasing colors with a lovely landscape to view out each and every window.  Little did I know when we were settling in here that I would spend most of the past 4 1/2 years housebound.  Little did I know that right when I started to get a little better, the comfort I found at home was about to drastically change.  I really don’t like it.  See what you think.

Three days per week a nurse comes dressed in medical garb to administer IV infusions.  Our living room morphs into a hospital outpatient clinic for nearly 3 hours with linens draped over the furniture to protect me, to protect her.  Packages arrive via Fed Ex at least one morning per week with bags of drugs on ice, medical supplies, and no presents, no card from mom.  The pup with the big brown eyes is sequestered in a back bedroom lest her presence or fur flying through the air risk breaking the sterile field needed to access the power port in my chest wall.  She whines and yelps for a time then drifts off to slumber as the drip, drip, drip of the IV bag empties into my body.  Gratefully my nurse is very skilled and unassuming.  She has the perfect temperament for all this stuff too.  I just wish we were out shopping instead, ya know what I mean?

I have tried very hard to pack everything up afterwards and in between home care visits.  The IV pole goes behind a door in a spare bedroom and the supplies fill a couple of bins and boxes in our office.  The laundry quickly goes into the washer after Michelle leaves to diminish the fragrance of her favorite laundry soap that lingers no matter how hard we try to avoid it.  Her shoe covers and all the used medical supplies get tossed into our makeshift trash bin and sharps containers.  Within the hour after my “visit” ends there is no trace of the intrusion that these treatments bring to our private spaces (except for the wooden sauna that rests where an entertainment center once was, that is!).

Oh well.  Thereafter with a foggy fatigue and soreness above my breast (from accessing and deaccessing the port each time) I make my way to bed for a very long nap.  The seizure attacks are coming down giving way to a time of rest.  At least I can retreat with a little more peace to the one place that remains undisturbed!

Perhaps one day I will find an internal space that refreshes when those around me can’t quite get it done.  Oh wait, yes, there it is in the shelter of the wings of my Savior, Jesus Christ.  He protects me and refreshes me from the trials, the troubles all around.  With Him I can face another day with renewed strength and courage.  You are my resting place, my hiding place, my refuge, my shield, my home.  Sigh.  This is good.  This is really good, thank you my Lord Jesus. With you I am truly home no matter where I am.  JJ

Psalm 142:5 (NIV)

5 I cry to you, Lord;
    I say, “You are my refuge,
    my portion in the land of the living.”

 

 

When the healing comes

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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

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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

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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