Tag: recovery

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

 

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

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

Torture, water-boarding and more: Part 3

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[Eight hours have passed since I wrote Part 2 that chronicled the second phase of my recent hearing and vestibular testing at our local Balance Center.  Four hours of the eight were lost to persistent deep-brain convulsive episodes then passing out in exhaustion and tears for about 2 hours.  These episodes are different from those usually associated with epilepsy; I do not have epilepsy as I am awake, aware of my surroundings, sometimes able to communicate, and can often pinpoint the trigger of the living hell that follows.  (See this link for more information.)  The assessment was completed 1 1/2 days ago but its negative impact has lingered.  Here is my conclusion to this story with hopes of a little cathartic experience to follow as I use blogging to let go of the trauma that went before me.]

In Part 1 of this series I gave a brief history of the four years of illness that has precipitated the referral for testing at The Balance Center.  In Part 2, I shared the severe struggle I encountered with the first two parts of the second phase of test procedures rendering me useless on a treatment table with my own carbon mask covering my face, wretchedly seizing without end.  Eventually and by the grace of God the episodes finally stopped.  I learned that the 3rd phase of the testing would conclude in this third treatment room where I was lying and would normally take about 30 minutes to complete.  Alright, so again I rallied, sat up, got some new goggles calibrated, and got ready for battle.

The technician, “M,” had me lie back down on the treatment table for what appeared to be a simple process of keeping my eyes open in the darkened mask while she would be squirting some warm water into my ears, one at a time.  She said that the water would only be a couple of degrees warmer than my own body temperature but might feel much hotter than that.  She wrapped the left side of my head in A LOT of paper towels.  Then suddenly without any additional warning a massive blast of really hot water banged against my tender ear drum!  WTF?  (Seriously, I generally don’t swear so imagine something nasty like moldy f-ruitcake at this juncture!)  Then within seconds and before I could catch my breath CAME A SECOND BLAST of equally hot water!  Within 10 seconds I was massively dizzy, yes, the highest number on her 4-point scale, thank you very much!  How is this even possible?  What the heck could they possibly be testing through such a tortuous, water-boarding procedure?  I winced in more head and neck pain as the convulsive episodes immediately returned with a vengeance.  “Why Lord!?  Why all this suffering?” my heart cried.

I struggled as she kept telling me to keep my eyes open for two full minutes or we would have to repeat the sequence.  Oh dear not that!  All I wanted to do was close my eyes to retreat into the smallest cocoon in my mind and die.  (Someone please kill me now.)  Keeping my eyes open in a darkened room and blackened mask under these circumstances was more difficult that I can describe to you.  I was wearing my carbon mask PLUS the large black mask pictured in Part 2, much like Darth Vader in The Force Awakens!  Of course in the thick of the now-violent head banging it would be my only solace to close my eyes and hang on for a ride worse than a Mexican taxi driver racing along a dirt goat path along the side of a cliff.  (I know.  I have endured that too.)  I am not sure that I even breathed a peep for the remaining seconds.  “Please Lord.  Make it stop!” I pleaded in earnest.

“M” graciously gave me all the time that I needed to start to calm down enough to try again.  Perhaps, she said, she could allow me to skip the cold water-boarding torture test if I could only repeat everything on the right side too?  Well that almost seemed like some good news at last!  And there would only be one more test after this one.  “One more?  O.k.,” I thought to myself.  “I am not coming back to this holocaust-for-a-day ever again so I had better decide right now how much of this I can really take.”  And in the life of a believer in Jesus Christ the answer is faithfully:  all of it.  “Somehow, my Lord has seen me through so much hell in my life already,” I reasoned.  “Please Lord, help me finish so I can go home.”

The last 2 blasts of hot water were slightly less traumatic in my right ear since I now knew what to expect.  (Imagine that:  you are about to get burned in one of your most sensitive parts knowing that it will spike dizziness worse than any world-famous roller coaster ride.  You know that it is coming as the train click, click, clicks up the steep hill of the Gatekeeper at Cedar Point or some such nonsense.  Good times indeed.)  In that back room of The Balance Center I braced for impact.  Smash!  When the two minutes thereafter were done I wept from deep within my soul once again.  There no longer was anywhere safe for me, without sickness or pain, anywhere on the earth.  I am not being mellow dramatic.  I was a machetied puppy in my spirit and broken in my weary frame.  Everything hurt grievously.

In due time I was able to sit up, transfer to a chair, and finish the final light bar test.  I have no idea how I did this.  Suddenly the technician’s tempo increased and she revealed that she wanted to take me to the lobby so that she could clean the room!  I knew that I had taken longer than most patients in completing the battery of tests.  And that’s when her sweetness kind of stopped.  She re-appeared with a wheelchair as I was still deciding if I was alive or dead?  Could I move my limbs to get up or had I digressed into the neurological collapse that often follows severe convulsive episodes?  More shaking, more head-banging followed this time sitting up and it had not stopped yet when “M” returned.  (Those attacks are the worst kind, by the way.  No protection for my neck when flailing up in space.)  If my central nervous system was in collapse-mode then I would require maximum assistance to move.  Moments passed.  I breathed as best as I could.  I really needed to walk out of there under my own power . . .

And so I did.  I sat in the lobby for at least 30 minutes then another 20 minutes in my truck before even thinking about driving home.  I could barely eat a few bites of the makeshift lunch I had brought with me.  The words “shell-shocked” apply here.  By the grace of God I rallied again and was able to drive home.  Within a few minutes of arriving safely I came unglued, raced to our bedroom screaming and crying, overcome with grief, unable to speak to my beloved husband in complete sentences about all that I had endured that day.  My mind unraveled.  Somehow I completed the mold-avoidance procedures we follow when returning from any public place.  Hot tears streamed down my face, mixed with the cleansing water from the shower head washing away the horror, revealing the sinus and neck headaches, unmasking the fact that no where in my body was free of pain.  The bed received me at once with more thrashing/hell that was required to unwind all the damage that had been done.  Eventually I passed out for about four hours . . .

********************

Somewhere in this journey that the Lord has ordained for my life will be a glorious story of redemptive grace.  A miracle perhaps.  Healing?  Wisdom gleaned from the years the locusts have eaten, so to speak.  Blessings?  Those are promises that we all can count on when we walk with the Lord our God through His Son, Jesus Christ (Romans 8:28).  We will know that our trials will not be wasted.  Something good will come from them whether in this life or the next.  When I am more recovered from The Balance Center ordeal I will speak about this with more confidence that I can today.  What I want you to know is that I am not giving up.  My heart raced and I was unable to breathe during one of the most violent episodes that transpired during the test procedures but I did not die.  That being said, it is again crystal clear there must be more for me in the future.  I am still here so why not get ready to really live instead?  I can deal with that one for sure.

And so can you, Gentle Reader.  But if you are “dead” in your sins then that is a different matter.  Why not choose life in a personal relationship with Jesus Christ who will one day replace all of this suffering with fulfillment of His promises?  Please contact me if you want to discuss this further.  Please allow my suffering to bring you renewal, bring you cleansing once and for all.  We simply do not have any more time to waste!

Godspeed.  JJ

The Extended Forcast is Good!

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Cast your burden on the Lord, and He shall sustain you; He shall never permit the righteous to be moved.  Psalm 55:22

But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.  Philippians 1:12

I am 2 days post surgical removal of 2 root-canaled teeth and THE CONVULSIONS ARE GONE!!!  Yipppeeee and praise the Lord!  This 3 years of daily hell for me and my beloved husband, Steve, is finally over!

While there is still much work to do to detox mercury toxicity and re-evaluate chronic Lyme and mold illnesses, I feel more optimistic that I will be able to tolerate those treatments someday.  Until this week, I was failing.  I was bedridden most every day with convulsive episodes.  The grief and impact was huge on everything from our finances to my aching neck.  My husband no longer got a full night of sleep and this illness had changed virtually every activity inside/outside of our home.  How would Steve find me when he came home from work?  Would he have to make me my pureed dinner and feed me again before bed tonight?  Carry me to the toilet?  Our hearts were weary after 3 years of this living hell.

Nine months ago I began investigating how two sore molars in the upper left section of my jaw might be impacting my health.  Four dentists and three oral surgeons, a cone beam CT, MRI, and pano plus regular x-rays later (including a consultation out of State) we had no objective data to guide us.  Everything looked “fine.”  The teeth had bothered me for over 13 years!  Fifteen years ago I had all my amalgam fillings removed but was never guided to chelate for mercury.  Were there silver filings containing mercury remaining underneath the crowns over these two teeth?  We will never know the answer to that question.  My saliva had started tasting metallic.  Eating started triggering the convulsive episodes.  With Steve’s support, we took an expensive leap of faith and pursued a dental solution.

Additionally, seven weeks before what would become the big day, I started eating only on the right side of my mouth.  Two and one-half weeks later I started a pureed diet to eliminate the chewing action that seemed to make things worse; all this was quite a feat since my struggle to get well led me to eat low oxalate, virtually dairy-free, and completely sugar/sweetener-free, gluten-free, and mold -free foods too!  Another two weeks later and 1 week before the surgery I noticed that using plastic utensils delayed the onset of convulsions after eating.  Even drinking my foods through a straw helped initially then ultimately triggered episodes.  I feared eating anything at all!  The only problem with that was hunger and thirst could also trigger convulsions or make them worse.  I felt trapped!

Three and one-half days before the dental surgery my doctor recommended trying an EMF deflecting device.  “It might help” he said, like so many other recommendations I had received all over the spectrum of traditional and alternative medical care.  After one such technology (a Rife machine called a Beam Ray) I tried 3 years ago to treat “Chronic Lyme,” the daily tic attacks started.  Within a year these episodes would escalate to waking seizure attacks then convulsive episodes lasting 2 to 5 hours per day.  We had tried to shield me from wireless technology in our home in the past yet the results were initially helpful then inconsistent.  This time the GEOMACK from Spain reduced the intensity of the convulsions 50%.  That reduction gave me a tiny boost of strength that I needed to physically and mentally prepare for surgery.  My husband got some much needed sleep as well!  Could their be an electrical cause after all?  (See this blog for more anatomy and discussion.)

The morning of the surgery went as usual.  Convulsive episodes began shortly after opening my eyes and periodically as we prepared to leave the house.  Seizure zips ripped through my hungry and thirsty frame as my beloved drove us to the hospital.  We were still reeling from the large check we had to carry with us since the oral surgeon insisted on performing the extractions near a crash cart, I guess.  And after some prayers, many silly jokes and one last shake/rattle/and roll with placement of the IV in my arm, the time had come to let go and not look back.  We reviewed my situation with the anesthesiologist and oral surgeon, surgical tech, and several nurses.  They were not to abort the mission if I seized under anesthesia!  Just wait a moment and get the job done.

I’d like to say that I woke up in a calm, blissful state but that simply was not the case.  I became nauseous and pain management was a problem over the next day and one-half.  Oh well.  One thing was certain:  THERE WERE NO SEIZURES OR CONVULSIONS!   The “battery effect” of dissimilar metals in 2 adjacent crowns over root-canaled teeth WERE FRICKIN’ GONE!  No more tazoring of my brain would continue.  And hey, if there was hidden infection in the root-canaled teeth then the problems caused therein are now also “history.”  The hell is over.

My job now includes retraining my brain to relax when falling asleep instead of bracing for impact.  My job now includes remembering all of the relaxation techniques I used to train my patients in psychiatric hospitals to deal with anxiety.  I need to rework those memory pathways and feelings of impending doom that followed me, waited for me every night, every morning, every time when I was exposed to noxious stimuli, or even on the clothing or breath of my beloved anytime, anywhere.  Hey, no problemmo.  I am ready to live and the extended forecast is good!

Thank you and big hugs to those of you who have followed my story for any length of time,  You have been an important part of my lifeblood to go on when I could not.  Sometimes my husband could not be home with me and I was alone, feeling terrified mostly of even greater suffering and it came.  The worst episodes were never captured on YouTube videos because my warrior husband was needed to hold me tightly to keep me from greater harm instead of holding onto a camera.  Sometimes the Lord was silent even when I cried out to Him when breathless, facing death again and again when my breathing stopped.  When He did speak I gained the courage I needed to face the next trial.  In the end, death was not my greatest fear.  Dying without my Heavenly Husband was.

But you know what?  I made it through.  Steve made it through.  A new chapter in our lives is about to begin.  I’m going to take some time now and regroup.  I am very weak.  An infusion of my Jesus is needed.  The warmest embrace with my beloved must follow.  And really good food cannot be far behind.  After tomorrow the putty d’ jour will be history!  Yeah God!

Pureed Tri-Color Carrots, Cauliflower, Bacon, Ground Round, Potato Chips, Homemade Broth, and Sea Salt
Pureed Organic Tri-Color Carrots & Cauliflower, Bacon, Organic Beef & Potato Chips, Homemade Broth, and Sea Salt in the Recovery Room!

With love, JJ

But the Lord was my support. He also brought me out into a broad place; He delivered me because He delighted in me.  Psalm 18:18b-19

Cast your burden on the Lord and He shall sustain you; He shall never permit the righteous to be moved.  Psalm 55:22

UPDATE:  The holiday from convulsive episodes did not last, unfortunately.  There were many benefits from having these two infected teeth removed:  significantly less mouth pain, less congestion in the upper shoulder and neck, decreased TMJ symptoms, decreased auditory anomalies, reduced ringing in my ears, and more.  Then there was a miracle:  our insurance company covered most of the $10,000 bill.  Amazing!  :J

For this I have seen

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The darkest time of night

Brings hope in ways not the norm:

When breathing is restored and the room stands still

My mind clears and my Lord speaks in ways never heard before.

He knows my frame

And delivers me once again

With less pain overall these days

And more wisdom than trauma for all the suffering.

For alas I can go

To such a wretched place

Time and again whilst wondering “why?”

Only to find hidden answers just for me, in the those tender places.

Not all makes sense

And that can be o.k. in the end

When I know the Lord is at the helm

And uses my suffering for His glory, my healing, to bring light, and more.

No, it was not wasted

When I found you who came along

This way with me where the blackest times of night

Served to shine streams of sunshine into days once lived in shades of gray.

Oh to keep mediocrity!

That would be dreadful indeed.

To never see beyond vanilla, boring landscapes

Creeping traffic in the middle lane when the Audubon beckons in a Ferrari 458.

Mach 1 with your hair aflame

Is bound to singe your eyebrows too

But how will you know if you are truly alive my dear

If you have not seen, tasted death along the edges of life truly lived whoot, whoot?

Because when it is over

A job will be waiting for you as me:

To tell our stories to those stuck in the dark

Or on an exit ramp on the wrong road they once thought went nowhere too.

There is always more

Even when our breaths are numbered

When we each see the door to the last destination

And can no longer wonder if we did too much or too little when our past cannot change.

The door to eternity awaits us both dear one:

With adventure of which we cannot conceive;

A place filled with wonder and no more tears

Where our heart will be home, finally, at last.

Will you risk this to be true and come to Him?

Will you lay down your fight, the need to know

To let Jesus Christ be your true reason to live:

The Alpha and Omega, the beginning and end.

Even when in our hearts we must let Him reign

Leading our thoughts and quieting all our fears

Adding His increase when no strength remains.

Finding this kind of peace transcends all we see:

We will find more than the mind can imagine for

We will live at peace I tell you for this I have seen.

:JJ

 

diaperthongGotcha!  ;J