Dealing with the trauma of illness

Not that I have a total handle on this topic or anything but hey, I have learned a few things worth sharing . . .

Every day for over 5 years I have suffered waking seizure attack episodes of varying duration and intensity.  For over a year (ending last year) they averaged 2 to 5 hours per day!  At least once per month they would spike up to 12 hours on and off in a single day, sometimes requiring an Emergency Room intervention.  I have been to 3 different emergency rooms a total of FIFTEEN TIMES including once by ambulance.  After nearly a year of IV antibiotics for chronic Lyme disease these episodes are generally less than an hour per day now with some positive changes in triggers and patterning.  Significant testing and other treatments, research, and patient “networking” remain my primary occupation.  I am grateful for the improvements that have come including overall less pain from the repeated physical trauma of “head-banging” and wretched writhing movements (thanks to  periodic intervals of physical therapy and periodic chiropractic adjustments).

The journey is hell at times.  At my worst times I have questioned if I could endure this level of suffering one more moment.  My breathing has stopped numerous times and there has been one significant near-death experience with visions of “white lights.”  I have had to pray many times for the Lord to give me the strength to get to the bathroom when alone during hours of convulsive episodes.  Every type of healthcare provider I have ever seen and most close friends and family has witnessed them.  My husband is a saint, having cared for me often late into the night then getting up and going to work the next day.   A total of probably a hundred times he has had to carry me across our home when I could not walk, feed me, take me to the bathroom, assist me with bathing, take me to the emergency room, run urgent errands, and the like as my primary caregiver.  Probably a thousand times he has volunteered to bring me some type of “rescue remedy” to attempt to get the seizures to stop (generally at night or upon waking in the morning).  He never complains.  He is my hero for sure.

In other blogs you will read about all the avenues we have pursued to try and get me well:  chronic Lyme disease, heavy metal detox, mold remediation, obscure infections, dietary restrictions, neurology workups, dental issues, nutritional deficiencies, epigenetic testing and coaching, electrosmog, gut issues, yada, yada, yada.  I spend hours per week researching, managing my healthcare, dealing with extreme mold avoidance and other preventative strategies, and accessing my support system online or by phone.  Church worship is also online to minimize triggers from environmental stimuli, however this strategy also increases my social isolation.  Trips away from home are generally focused on essentials during my best times of day and occasionally with transportation help from a couple of sweet gals from church.  I wear a mask in their cars and sit on a towel covering the passenger seat but we find a way to connect anyways during those trips when help is needed about once per month.

As you can see, there is much abby-normal stuff during my days.  Social isolation and the ongoing seizure attacks are my biggest heartaches.  The latter causes both physical and emotional trauma when they are severe which still happens two of the seven days per week still marked by ongoing episodes.  The two this week included:  1) a violent reaction to an ingredient in an new injected medication that I need to treat osteoporosis and 2) a new strategy to treat severe Small Intestinal Bacterial Overgrowth.  Both of these conditions very likely are complications of ongoing illness as they were not present before I got sick on October 11, 2011.  Each new diagnosis will bring its own special kind of discouragement if I don’t keep my worries in check with my hopes placed in the redemption promised with belief in Jesus Christ.  Already I mentioned a few of the strategies I use for managing the social isolation.  What about the trauma?

I manage the trauma of severe, ongoing illness by trusting in my Lord and Savior, Jesus Christ.  This used to mean that I trusted in the promise of Jeremiah 29:11:

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.  (NIV)

Surely if there is a purpose for all of this suffering then it won’t be wasted.  It becomes part of a greater plan, encouraging me enough to endure even the worst of the pain and anguish I am enduring.  This viewpoint has helped me cope during the first 5 1/2 years of this illness.  It carried me through the decisions to spend the rest of some savings with the hope of a cure and to endure the side effects of such treatments.  I can look back and point to the skills and information that I have learned, write about them here, take to heart the remarks of others encouraged by my stories, and note the Divine sequencing of many things that have happened along the way.  The Lord has provided so much for my care that gratitude has replaced temporary doubts, frustration, discouragement, intractable pain, and so on.  Seeing some meaning in what I am going through or shortly thereafter, gave both me and Steve enough hope to keep moving forward no matter what the “cost” may be.  But what about when the process stopped?  The money ran out.  I am not recovered.  There was no where else to go this past Winter when I got to the bitter end of my proverbial rope with worse symptoms than I could ever imagine!  Yeah, that was the onset of facial shingles in December.  More hell and a hospitalization too.

That’s when I needed to learn to trust whether there would be a purpose I could see or if there would be no purpose or direction at all.  I discovered that complete trust in our Heavenly Father builds faith and the strength to carry each of us through ANYTHING and EVERYTHING.  It’s a supernatural gift bestowed upon believers in God Almighty who trust Him.  For those of us chosen to travel a path of excruciating suffering, we must find our way to this level of trust in the Lord our God.  Our faith will grow as a result and both will carry us through the dark times no matter how dark they become.  Did I tell you that frightful demonic attacks have come during the worst of the waking seizures?  Yes.  It’s more terrifying than I can describe but may try to do so another time.   At those times only the spiritual armor of God (see Ephesians 6:10-18) and this reassurance spoken by the apostle Paul will quiet my spirit.  God is greater than any threat in this world, in my world, period.

2 Timothy 1:7  (NKJV)

For God has not given us a spirit of fear, but of power and of love and of a sound mind.

Because what is my worst fear anyways?  Dying?  For me it is probably not dying but suffering even more with dying as the end result.  So finding peace when dealing with the trauma of physical and mental suffering must be accompanied by the reminders of Who overcame death, in Whom have I placed my trust, and in Whom will I find victory over my fears.  To extinguish the fearful thoughts I must again turn to the “sword of the Spirit” as described in Ephesians 6:17 as the word of God.  In the Book of John we find Jesus comforting a grieving friend when:

John 11:25-26 (NIV)

25 Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; 26 and whoever lives by believing in me will never die. Do you believe this?”

Not only did Jesus overcome the grave when He rose from the dead on Resurrection Sunday (Easter), He gave those who believe in Him the promise of a glorious eternal life in His presence where there will be no more weeping, no more sorrows.  There will be rewards for the faithful too.  There will be perfect peace, love, and joy forever.

the cross

I may never see healing this side of heaven.  I may see healing this side of heaven.  I really have no idea which one it will be or when it will happen.  In the meantime I will simply trust in Jesus Christ who knows my name and sees my suffering (Psalm139) and ordains it somehow for good.  He will be here with me always.  I ain’t dead yet so I trust that He will add His grace and power to see me through to my last breath.  Until then Gentle Reader I ask you,

Do you believe this too?

A Tender Place

Hellebores, hybrid, tender, lenten rose, blog, poetry, prose, Winter, early Spring

So if the Lenten rose can bloom amidst the snow

Yet if I not carry forth my joy past the continuing rain

Does that make me a bad person, my beloved, my dear?

He told his tale with passion once and again and again

Yet I have not seen the same victory these many years

Does that make me ungrateful before my Savior, my King?

To celebrate this one’s renewed life, ’twas hard-won indeed

Doth makes me part of this man’s humanity in Christ

Yes, takes little, no none from my own pool of goodness . . .

And yet I cried and pushed myself away, away for a time

Lest my tears steal more than the punch line to come,

Dost my ingrace keep me from moving forward one day?

Aye this is a tender place whereat I have landed

Not bad, non-indifferent, full of meaning that I like

Where life meets the road upon which it travels and perceives.

My Lord knows this woe:  He cried for the sorrows we do endure

Then gave the breath from His very lips so that we may live,

Be free of it all at last, the strife, every bit, you and I both.

For we two understand what it means to face death

To fear the life places that would ignite some others to thrive

But it took a tragedy beyond belief to get us moving right.

We may have wrestled then let go as our Redeemer carried us along

Finding one day that peace hath returned:  covering the tenderness

Becoming the places that defined us whilst ending the story done well.

[My hope is that I am in one of them right now, Gentle Reader.]  JJ

White light and angels

They were tall, white angelic beings moving towards me amidst a glow of an even brighter light.  I did not understand what was happening at the time as I was just waiting there with the figures floating towards me.  More of them were to the right than to the left; or maybe I could not see them as if blinded by sunlight.   But this was not sunlight.

I sensed them coming closer, around behind my right arm as if to escort me somewhere.  I began to drift forward.  Then I stopped.  Why had I stopped?  Was not this the right way to go?  And then the words spoken to me were felt more than heard:  it is not time yet.  And they were gone.  No light.  No angels.  Just the darkened images remained inside my mind that are always there when one’s eyes are closed.  When I opened my eyes I saw the inside of the camper all around me.  Most importantly, I WAS ALIVE!

Quickly realizing what had just happened, I groaned for strength deep within me that was not available in my listless frame.  “I have to open the windows!” I exclaimed inside my head.  Horror nearly immobilized me.  Could I do it?  Could I reach it?  Which window?  How do I open them?  Let’s see, first I have to get up on my elbows to push myself up.  Then lean forward to create momentum and reach out my arms to grab the back of the dinette.  Slide forward and get my legs onto the floor to bear weight to stand.  There, that’s it.

By the grace of God I was able to get the window opened and reach up to open the ceiling vent further before carefully collapsing back into bed.  “Just avoid hitting your head on the bunk over you,” I thought to myself.  Soon I could feel the rush of cool, fresh air on my face and arms.  I took in a deep breath, reviving further.  I was going to be o.k.  Sigh.  What the heck had happened to me?

Some might call it a near-death experience.  Others might label such an experience as a hallucination from toxic fumes.  I prefer to call it an experience in another dimension that I cannot fully explain.   Perhaps a second chance at life.  For several hours prior to this vision of sorts in my “mind’s eye” (not really seen as I looked around and not really imagined with my eyes closed) I had struggled with seizure attacks and convulsions.  This happens about every week or so that I endure much of a day with continuous noxious episodes.  This past weekend landed me with two days like this in a row!  Such is life in the mysterious world of mercury and unknown toxicity.  The typical episode triggers of hunger, thirst, needing to void, feeling cold, fragrances, waking up, falling asleep, mold, or food sensitivities did not apply that day.

We had arrived in Alabama at about 4:00 a.m. after over 15 hours of travelling by truck, towing our travel trailer cross-country.  Temperatures the next day were still around 40 degrees in the deep South when my beloved ventured off to see his son-n-wife at Fort Rucker Army base nearby.  It was usual for me to stay behind after long ventures to rest up, hoping to visit with everyone later the next day.  After sleeping about 7 hours I had made myself a breakfast of my special diet leftovers and yummy coconut almond milk.  My tummy was satisfied yet I still felt groggy so I returned to our comfy bed.  Gratitude filled my thoughts for having a safe place in which to retreat with all the provisions that I would need away from home . . .

Clearly some provisions I did not need after all!  Our crochety campground water spicket was frozen solid so we were unable to hook-up fresh water to the camper and use the toilet as designed.  Gratefully some of our emergency gallons of water were starting to thaw so we had a reserve for flushing the toilet and drinking the next morning.  But unfortunately since we had departed from the frigid North the day before, we had to take our entire journey with a camper still winterized with “non-toxic” RV antifreeze.  All of the drains and toilets were still filled with the scent of the pink stuff.  Not thinking about the mixing of products, we used some windshield washer fluid to flush the toilet a couple of times.  Then when I was concerned that the toilet waste solids would congeal, I tossed in a Bio enzyme pack, earth friendly of course, with barely a scent of pine or something.  Pink and blue and green make . . . ?  Something not nice, I now understand!

Before we crashed into bed, we had already opened the overhead vents to help control condensation inside our unit.  What I did not realize is that a window I had also opened in the morning was above the venting for the propane furnace!  I’m not sure what chemical compounds might have made their way back into our living space since the carbon monoxide detector had not been activated.  Maybe I just don’t do well with propane gas altogether.  Who knows?  What I do know is that the noxious mixture nearly sent me to heaven!

Sadly after eating that morning it was all I could do to get to the bathroom and collapse onto the bed instead of the floor.  I could not, did not move for a very long time.  Slow thoughts of my inability to move, recognition of my awkward positioning, wondering how long Steve would be gone, the location of my cell phone all dawdled through my head.  And they stayed there.  There was nothing I could do about anything and I wasn’t even sure exactly what to do anyways.  My thoughts were dulled into a kind of motionlessness that was similar to my poisoned body.  In time the white light and angels came.  In time I was able to get up as described earlier.  In time Steve came home and found a broken shell of a woman recovering quietly in our bed.  Many tears followed.

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

Death is a funny thing.  You think you know all about it from watching others pass away then transitioning into a waxy state lying in a wooden box placed in a funeral home parlor decorated like an old rerun of The Beverly Hillbillies.  Sermons, Biblical passages, and Christian authors have much to say about this life and the next but until you face it yourself the words simply won’t mean much.  The unexpected BENEFIT of having a severe illness that brings daily seizure attacks and convulsions is that every day I get to face death in addition to the newness of life.  My breathing stops and it starts back up again.  From a spiritual standpoint, THIS IS NOT A BAD THING!  As a result, each day I take practically nothing for granted as life and some goodness are imparted to me.  This process is extremely humbling.  I have also learned that death is not something to be feared . . .

Many years ago a friend, Louise, shared with me an audio tape of Pastor David Jeremiah in which he stated,

“God’s man in the center of God’s will is immortal until God is through with him.”

Oh yes.  I have now lived through many brushes with death and seen this to be true!  So where do I go from here?  I’m not quite sure, really.  What I am sure of is that I will probably write about it!  You will be the first to know my beloved Gentle Reader when the inspiration comes.  Until then how about if we keep the windows open on the opposite side of the furnace, take care of ourselves as best we can and keep our eyes fixed on the Lord.  The light of His love will surely shine upon us all the days of our lives until He calls us home.  As for me, I will be ready.  How about you?  JJ

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For this I have seen

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