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?

Let the numbers tell this story

While the numbers in my college statistics courses were fascinating and I applied them well in my Master’s thesis, I must admit that math was never really my forte.  I’ll blame it on Mr. Courtright!  Our Algebra II/Trigonometry course in high school was a constant source of frustration!  John and a couple of the other male students would pour over the text book with him at the front of the room trying to understand the lessons he was supposed to be teaching that day.  Yeah, you got that right:  high school seniors trying to figure out advanced mathematics on the fly!  I am so very glad that I never again had to sit through a traditional math class after that one!

Statistics are a different genre though.  Statistics often tell a story that we can use to make sense out of the stuff of life.  For example, landing one standard deviation from the mean (the average) in a bell-shaped curve can help us feel like things are going to be o.k. most of the time, in the right scenario of course!  Enter here special numerals applied to my recent trip with Steve to Georgia and South Carolina that will tell this story better than I can even without a calculator!  Oh how I wish some of these were more comforting than the majority of them though . . .

Over 7 days of camping in 2 locations, I was unable to leave the travel trailer 3 of the days due to illness.

My beloved Steve attended 2 of the 3 family wedding-related activities in Georgia and I attended zero.

We travelled over 2,000 miles in my truck with our 67-pound German shepherd, Elle, settled sweetly behind the jump seat of the King Cab.  Such a great traveler she has become!

I prepared about 96% of all of my own meals making this trip more of a “business as usual” affair than vacation in the realm of food.

One hour of the five that I spent in our friends’ home on Monday was spent in continuous convulsive episodes on their couch.  Thankfully the two young children had already gone off to bed when I crashed; graciously the three adults prayed over me for the Lord’s tender care as we all go forward from the significant stressors in our lives.

The kids and I planted 32 daffodil bulbs the morning we left South Carolina, overplanted with dozens of anise hyssop seeds.  Hooray!  By Springtime the view from the kitchen window of their log cabin will be alive with flowers interspersed amongst the numerous towering pines.

daffodils, mini daffodils, buttercup flowers, Spring flowers

A threatening wind storm with gusts up to 40 MPH forced us to leave a day early for safety towing our Camplite on the highways to get back home.  Just a few minutes after we arrived home at 4:00 a.m., the winds increased again closer to the estimate of 50 MPH by morning.  We had blown in just in time, praise the Lord!

Nearly 4 days have passed since we got home and I have yet to clear out, clean out the rest of the trailer as needed after a week of travel.  Steve completed the first 5 loads of laundry and about 3 more are left to go.  I have been sick in bed for most of the past 3 days, sleeping in late to recover from the nasties which characterize this wretched illness.

Over a dozen doses of a new anti-microbial treatment (Biocidin LSF) have brought both relief and a flare up of symptoms at times:  begun when travelling and continued back home when seeking a new direction, new relief, new hope for a future without illness.  Two violent convulsive episodes followed on Friday after an appointment with a new specialist and a new lab test, respectively.  Many more filled the 2 days that followed.  Perhaps this week (and 2 weeks shy of the 4-year anniversary of the first waking seizure attack) there will be an answer to end this suffering?  The odds are wearing thin lately for sure.

Yet through it all, I am reminded of the 3 days that my Lord and Savior, Jesus Christ died and paid the price for all the negative numbers, the heartaches from what is not right in our world.  He knows the mathematics of it all greater than I can ever imagine and holds it all tenderly in the palms of His hands, ready to redeem it for good when He comes again in glory.  I choose to believe the promise that His precious thoughts towards me and you too, Gentle Reader, outnumber the grains of sand on the earth (Psalm139), giving us hope for a better tomorrow.  For as He thinks fondly of the ones He loves, He also promises to wipe away our every tear someday (Rev 21:4) when the time is right:  when time is no longer numbered in eternity with our Heavenly Father, God.

And that my friend is a story worth writing about.  A world without limits.  A love beyond measure.  I just hope that when all is said and done, when it is time for rejoicing in the heavenly realms, that you will be there with me there too?  Let not these numbers be wasted!  Won’t you accept the love of Christ into your heart this day, this night too?  Oh how I hope so dear one.

With love, JJ

Obedience

Obedience is one of those words like “discipline.”  Not popular either one of them, yet both separate the whining cry babies from the mature adults amongst us.  For believers in Jesus Christ, obedience matures our faith and transforms us into the image of Christ (a work never completed during our lifetimes).  In our humanity our flesh tugs at us to rebel or be tempted in directions other than the leading of the Holy Spirit.  But by focusing on His incredible gift of grace, studying His holy Word, and submitting to the leading of the Holy Spirit we will end in a better place for sure.  I have seen it in my own life and in the lives of others.  His will is best.  His timing is best.  Why?  Because He loves us and because He is God!

These thoughts came to me after reading an interview of Ravi Zacharias in the RZIM Summer 2015 newsletter and listening to a message by Pastor Paul Mowery of Harvest Fellowship in Leo, Indiana.  At the close of his message on Romans 11, Pastor Paul encourages us to “be about worship,” praising His great name for having mercy on us as recipients of the Lord’s grace.  We are not to dwell on what each of us may have done that draws attention to ourselves.  We are to be about Him: worshipping our Father God.

Lately I am struggling with these themes.  Many of my posts here have tried to pull something meaningful out of the challenges of a wretched illness.  As the days wear on with the setbacks of late, I have found myself literally screaming out my anger at God with the wails that accompany the convulsive seizures.  “Why do you hate me?”  Oh yeah, it’s bad.  Even my beloved Steve who has been at my side during a fair amount of this hell admits his anger at God.  And we are convinced that this is an o.k. thing to do.  It is not an o.k. place to stay, however.  And it is certainly not an acceptable attitude to act upon.

You simply cannot be angry at someone whom you do not love dearly.  Such is our dilemma.  We both love the Lord, Jesus Christ, and are humbled, grateful for His mercies in each of our lives.  We have so much goodness between us!  We are grateful for so much!  And in our humanity we are broken and don’t like the brokenness.  Way down deep we are hurting and it is this hurt that fuels the anger.  Admitting this will be the way out, the way back to fellowship, the discipline that will bring obedience, the song of worship yet to come . . .

So, as the Holy Spirit says:

“Today, if you hear his voice,
    do not harden your hearts
as you did in the rebellion,
    during the time of testing in the wilderness, (Hebrews 3)

***********

Therefore, holy brothers and sisters, who share in the heavenly calling, fix your thoughts on Jesus, whom we acknowledge as our apostle and high priest. He was faithful to the one who appointed him, just as Moses was faithful in all God’s house. Jesus has been found worthy of greater honor than Moses, just as the builder of a house has greater honor than the house itself. For every house is built by someone, but God is the builder of everything.  (Hebrews 3)

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

being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.  (Philippians 1)

Today with the faith of a mustard seed (that I understand is rich in nutrients of which I am needing anyways!) I will choose to honor and worship the Lord, my King.  He has built this frame in which I dwell and within it dwells the Holy Spirit.  Broken or not, it is the vessel from which I will praise His name all of my days.  I lay my angst on His mighty throne of grace, with great expectation of His promise to redeem it for His glory.

obedience, endurance, waiting on the Lord, discipline, redemption, redeeming grace, redeem

May He be glorified in all.  My Jesus.  My all in all.  Worthy of our praise.  Worthy is this Lamb of God!  JJ

Waiting

Psalm 130 New King James Version (NKJV)

Waiting for the Redemption of the Lord

A Song of Ascents.

130 Out of the depths I have cried to You, O Lord;
Lord, hear my voice!
Let Your ears be attentive
To the voice of my supplications.

If You, Lord, should mark iniquities,
O Lord, who could stand?
But there is forgiveness with You,
That You may be feared.

I wait for the Lord, my soul waits,
And in His word I do hope.
My soul waits for the Lord
More than those who watch for the morning—
Yes, more than those who watch for the morning.

O Israel, hope in the Lord;
For with the Lord there is mercy,
And with Him is abundant redemption.
And He shall redeem Israel
From all his iniquities.

Psalm 130

A Call to Build

The prophet Haggai in the Old Testament had to remind the nation of Israel that the current day was as good as any to rebuild the temple of the Lord.  They were preoccupied with the day-to-day events of their lives, much like we have with some variations.  These days we have Twitter updates flashing or beeping us the latest trivial matters we used to not care about to the stress of keeping up with the accelerating pace of life.  It takes more effort than ever to SLOOOOOW DOWN and smell the roses.

Ooops!  Did I fertilize them with Rose tone when I cut them down on Saturday?  Shoot.  I better fertilize the William Battin climbers now because they are growing and wait to feed the Knock Out rose bushes since they are still dormant . . .   And off I go again . . .

When Pastor Paul Mowery preached on the book of Haggai recently he asked the congregation a question about the things we once promised the Lord.  What did I feel led to do as a young Christian or during a time of spiritual growth that I am not doing today?  What happened?  Was the inspiration transformed into another purpose or forgotten altogether?  Hmmmm.  Even when facing times of crisis this is a question that benefits from our reflection.  If all things work together for the good of those who are called according to His purpose (Romans 8:28) then it is possible to further our ministry purpose even in fast-paced or challenging times.  And for most of us, these are challenging, fast-paced times!

Some of you know that my brother (Michael) had a stoke 9 days ago.  Today Mike will be transferred from an acute cardiac/telemetry floor in a hospital to the rehabilitation unit.  We are encouraged by this news!  This means that he is stable enough to tolerate up to 3 hours of physical, occupational, and speech therapy per day in addition to having his funding issues largely resolved.  (He does not have health insurance and is applying for the Medicaid Extension Program.)  Mike continues on a “pureed diet” and “thickened liquids” (aka Pepsi!) with one-to-one feeding for swallowing safety.  He has not moved his left arm or leg yet since the onset of the stroke one week ago.  While his speech slowly improves, I understand that his mental status varies in the finer points of reality orientation testing.  This has delayed the filing of his Power of Attorney for Healthcare status needed in case of an adverse event.  And lastly, there’s a decision pending of whether or not he will have surgery to place stents in his carotid arteries:  with high blood pressure, the occlusions were the cause of the right CVA.  All-in-all, Mike is embarking on the next leg of a long journey of recovery; we are grateful that that next step is beginning today.

One of the most significant events from my visit to see him last Tuesday was his statement through garbled speech, “I need Jesus.”  When he said that I was speechless myself.  I was still responding to the horror of seeing my brother so severely disabled as he lain in bed with his waxy bed rest complexion, sunken left side of his face, catheter-and-wires attached to his skinny frame, and lifeless look in his eyes.  I had to dash into the hallway as my eyes flooded with tears!  The night before we travelled out of State to see him had been a nightmare anticipating that moment as it triggered residual grieving from the loss of my last grandparent, parents, and youngest brother over the previous 11 years.  So the the next day in the midst of my own emotions, my dear brother reminded me of what was most important.  Yes, “I need Jesus too.”

What Jesus has for Mike will of course be different from what He has for me.  Our health challenges are different yet both bring significant physical weaknesses.  The seizure attack episodes have increased to over 4 hours per day now with the worst ones occurring after waking up in the morning and after dark in the evening.  I can do nothing but lie in bed and ride them out.  I no longer can tolerate the high CBD hemp oil that gave me relief last month.  It doesn’t work anymore anyways.  Another medical doctor has set me adrift after only 2 months of working with him!  Gratefully there is a Dr. in his practice (a biotoxin expert) with whom I am scheduled to follow-up with next week.  Gratefully I have already completed the preliminary lab work she requires.  In the meantime I have about 6 hours each day where I can function at a reduced level.  And now in the face of my brother’s devastating stroke, I see how very fortunate I am.  I am optimistic for a full recovery from the biotoxin illness that I once thought was Lyme disease.  Sometimes it takes 2 1/2 years to find the answers for which we seek, and for which the Lord may bring.  It takes what it takes as I wait on the Lord.  And in the meantime I have built a firm foundation in trusting Him through what ever may come.  I didn’t say it was a perfect one!  It is solid in Jesus Christ and His Word.

Mike is yet at the beginning of building his foundation.  Indeed he will need Jesus to do the tasks ahead of him both for his own recovery and to be a wise steward of the love relationships in his life:  that with his fiancé (Lisa) and Lisa’s son (Alex).  Gilbert the dog should be fine.  🙂  I am sad that his journey looks insurmountable in the beginning.  The obstacles appear tremendous in the humble opinion of an occupational therapist on a medical leave.  All of my training is rushing forth wondering about the potential for new complications and very real permanent disability.  I am going to need help lying all of that before the Great Physician for His wondrous omnipotence and care.  With Jesus, all things are possible and Mike’s illness will not be wasted.  Mike has professed faith in the Lord, Jesus Christ.  The Lord will meet him on his bed of sickness and redeem it for His glory.  In that we can be sure.  (Psalm 41:3)

The call to build can be a frightful one in our own strength.  I submit to you that we cannot build anything of lasting value in our own strength.  The outward man and the trappings of the stuff of his life will fade away in due time.  Only things rendered unto the Lord and completed with His leading will last.  Yes, Mike’s call to rebuild his body begins today with a transfer to the rehabilitation floor of the hospital.  My own call to rebuild comes with revisiting the biotoxin protocol I discovered over 2 years ago.  He and I are like every one of us who faces the question of what will consume our time, energy, and talents in the next 18 waking hours let alone the rest of our lives.  So what will we do with our discretionary resources?  How much discretionary resource does each one of us really have?  And are we spending it for what will last or for what is, in the end, meaningless dust in the wind?

As for me, I know that I am called to write about my experiences within the context of the will of the Father in my life.  Writing poetry was my outlet ten years ago when I could hardly write a complete sentence due to my emotional pain.  Today I leave you with the words of the second wisest man (King Solomon) to ever live after Jesus Christ. I left these words in Mike’s room in scripted on a tiny plaque that encouraged me so long ago when faced with the task of rebuilding my life. May they encourage you too, Gentle Reader. Let us both begin to gather ourselves that which is needed to build something of lasting significance, beginning today.

 

 

Ecclesiastes 3:1
Ecclesiastes 3:1