Just short of maximum destruction

monster truck, women, riding, Maximum Destruction, celebrate, ride a truck

That’s me with my brother’s girlfriend catching a ride on a Saturday night as I waved to my husband from the Monster Truck ride at the Maximum Destruction show.  Although I had never ridden in a jacked-up truck before, the figure-8 track of an auto raceway not far from the Motor City is nothing new for me.  I grew up hollering and hooting during demolishion derbies on hot summer weekends in the Detroit area where I grew up.  Virtually everyone in my family worked in the auto industry, the men in my family all tinkered with their cars, and my Dad founded a company that produced the fastest slot car motors on the tracks in the 1960’s.  It seems so long ago yet the adrenaline is so easy to tap into when I hear those engines get revved up!

The racing was exciting!  The effect it had on me was not-so-much exciting as it jittered my fragile nerves.  We did make it all the way through to the trailer races on the figure-8 track at the end of the night:  battered vehicles of all types pulling various types of 2-wheeled trailers for about 10 laps around the track.  The smash-ups drew roars from the crowd and the buggy towing the large teddy bear in a row boat took home the trophy that night.  I was exhausted as my own River Bear drove us home into the wee hours of the morning back across the State lines to Indiana.  What a crazy night!

I am not sure if it was all of the smoke that seeped through my charcoal mask, the vibration of the roaring engines, sitting on those damp wooden bleacher seats, or what exactly affected me the most on Sunday.  I sure slept a lot!  Certainly any of it would have kept me home just 1 year ago.  I am doing better in many ways.  But today brought another bad convulsive episode that seems to be happening again about every other day now.  We are puzzled; I am discouraged.  The healing from the specialized dental appliances and upper cervical chiropractic care appeared to be helping to decrease my reactivity, normalize my sleep/wake cycle, increase my activity level, and overall decrease the episodes.  There were at least 2 days per week when I had no seizure attacks at all!  And now they are back.

The only possibility we can think of right now, after nearly 7 years of serious illness and more medical care than you can imagine is a hidden issue in my cervical spine.  Cervical vascular disease can give rise to traditional seizures but more in the acute phase of these issues than in a chronic phase.  When neck extension can trigger them and the episodes can include a near paralysis of one side of my body then I start to think there is more going on than some pinched cranial nerves.  Have the dental appliances reduced my symptoms 80%?  Yes, until now, they have yet I still deal with the remaining 20% every day.  Chiropractic adjustments and physical therapy  have both triggered and resolved an onset of episodes.

My medical doctor took some convincing then ordered the first of a couple of diagnostic tests after realizing that I have a family history of carotid artery  and heart disease.  I was at the race this weekend with my brother who had a devastating stroke 4 years ago due to occlusion of his carotid arteries.  For me, initial testing shows that my carotid artery is fine; it is the vertebral artery that could be most suspect as it travels around the first cervical vertebrae called the atlas.  More testing should clarify what is going on.  I often have instability or rotation at the level of  C1.  It doesn’t move correctly during flexion or extension according to specialized cervical xrays.  We have got to figure out what is going in these structures in my neck!

Today and some other days recently, Steve providing simple distraction technique of my neck eventually resolved my worst symptoms during a bad episode.  Extreme fatigue follows with an emotional release of frustration, despondency, exasperation, grief, and sorrow.  This has just been going on for so very long!  I am amazed that all of the massively destructive movement patterns occurring thousands of times day after day for years has not caused more damage to my weary frame.  This finding actually gives me hope — that if the episodes stop then maybe I can regain some physical health and fitness with with what is left of me, with the body my Lord has entrusted to my care.  Even those beat-up sedans, pick-up trucks, and other stock cars on the race track somehow keep going to win races week after week.  Just tune ’em up, sure-up the quarter panels-n-bumpers, and onto the track they line up to race another day.

Perhaps that will be me at some level too in my race called “life.”  Only I think I’ll add a little more bling to my frame than the lipstick ladies did to their jalopies during the first heat this past Saturday night.  I might even spruce up the “paint job” on my hair color too.  Next weekend (or hopefully one day soon) just might be my night to shine when the official waves the green flag to get up and go.  Surely that will be a prize worth waiting for . . . just short of the ultimate finish line in heaven.  Yes my Lord, I’m ready!

JJ

Hebrews, 12:1, run, the race, with endurance, Bible verse, race of life

He really cares: Part 2

Please forgive me for leaving you hanging, Gentle Reader!  I left you hanging by a thread in this blog almost 2 weeks ago.  Clearly I made it out o.k. from the doctor’s office!

charcoal sketch, sketch of woman, side view of woman, head shot, female drawing, picture of lady

Since there were many hairy details in the horrible situation I was in on July 29th, I will shorten things up a bit here.  In my last post, I ended whilst lying on my side, paralyzed and inches from the floor after a convulsive episode in the exam room of a Physician’s Assistant (PA).  The second of two severe seizure attacks had occurred since entering this room and the second of two episodes of neurological collapse was in progress.  Eventually the PA returned and forgot everything I had ever told her about what to do in this circumstance; she even forgot that in the first episode (that she had witnessed) I was unable to speak or move.  All she kept asking was, “Do you want me to call an ambulance?”

Finally I was able to break through what was happening in my brain to express the greatest need in my life at that moment, “PLEASE REMOVE MY GLASSES!”  As she wrenched my neck and lifted my head I screamed in excruciating pain from having had my eyeglasses and sunglasses wedged against my face for so long.  Extreme sensory sensitivity accompanies the worst convulsive episodes; pain in particular is magnified as if you had tried to electrocute me!  So when the PA tried to remove them, it was as if a bolt of lightening had jolted through my face!  She asked again about the ambulance.  “Did I want to get up onto the table to be more comfortable?”  I could not speak or move at all.  Then she left.  A long time later she returned.  Then she left.  A long time later she returned.  Then she left.

To pray was my focus since the trained medical professional was of no help!  Thankfully after a long time, it was the Lord Who helped me twist and turn my torso so I could lie on my back across two chairs with my legs pulled up underneath me.  It took about a dozen tries before I could lift my head segmentally to reach a sitting position with my head supported by the wall behind me.  Never did a wall seem so comforting . . .

Eventually a nurse, the really sweet one, came into the room with a wheelchair so I could be taken to the bathroom.  Herein I benefitted from my training in transfer techniques as an occupational therapist.  My arms were starting to regain motor control but my legs were like dead weight .  I lifted them one at a time with my right arm (more functional than my left) off of the leg rests of the wheelchair and onto the floor, braced myself with the grab bar along the wall next to the toilet and pivoted myself around; I reversed the procedure with more adaptive techniques to do all of the things I needed to do in the bathroom.  By the time I was wheeling myself out of the bathroom, the really sweet nurse had returned to take me to the hospital in the building next door.  At last, over three hours later and feeling majorly beat up, I would be getting the IV fluids as ordered!

Unfortunately the IV “Lactated Ringers” didn’t help me much.  The nightly convulsive episodes returned followed by wake-up tazoring the next morning.  I was so beat up from everything.  The following evening I did make it to the grocery store when things had temporarily stabilized.  Such an ordeal!  Calming my anger at my medical providers has taken every day since then.  The doctor never mentioned it when I saw him last week.  He did not even ask if the IV fluids helped me to feel any better.  Sometimes that guy is just too focused on test results (or whatever) to examine the overall process of this patient’s sickness, the clues that might be hidden in plain sight.  Oh well.  The second appointment to review additional test results last week was cancelled (as are about 35% of his appointments).  A minor flare up of the ol’ anger distracted me once again, gratefully for less time . . .

So who really cares if I live?  Suffer?  Die?  I have spent the last 15 days meditating on this.  The real question emerged beneath these cries and it was not to find out if anyone really cares or not.  There are people in my life who love me and for this I am grateful.  The real question turned out to be whether or not I had submitted this illness to the Lord as a living sacrifice.  Who is really in charge here?  Did I offer it to the One Who sees all, loves me more than anyone?  Could I view laying this illness at the Lord’s mighty throne of grace as an act of both obedience and worship?  He calls believers to do this, by the way in Romans 12:1-2

Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship. Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.  (Romans 12)

The Lord knows that our bodies are not perfect and that our world is not perfect.  Why would the God of the universe desire me to make alms to Him with my weaknesses?  He desires our devotion in all things and loves me and you just as we are.  But wouldn’t he rather have a tithe or act of service?  NO!  He is God not some distant authority figure or Santa Claus.  He loves us, has mercy on us, completes us, pours out His blessings, defends us, and promises to make good out of the fallen things of this world no matter how ugly.

1 Peter 5:6-11New International Version (NIV)

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 11 To him be the power for ever and ever. Amen.

I am holding out for the promise that lies within these words.  He will restore me in due time.  Who cares for me?  Who cares for you?  The Lord Jesus Christ, that’s Who!  In Him we will find rest no matter what may come our way.  We can be sure of it!  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)

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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)

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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

Bacon as a way of life

So my beloved says to me, “look at how far you have come,” related to my diet.  Indeed.  When we first met I was eating gluten-free, low sugar and fat, largely organic, and sweetener-free, and dairy-free foods.  I cooked a lot and was very particular what I ate at restaurants, often bringing my own nuts or dressings.  Supplements?  Yeah, in due time with my new doctor at the helm my pill box burgeoned to over 60 doses of something per day!  Then part of the story got crazier . . .

As severe illness set in, the supplements would change and almost disappear as time went on.  I could not tolerate any supplements at all after a brief hiatus required during overnight testing at the Epilepsy Center, University of Indianapolis Methodist Hospital.  By then I had added a low oxalate and Candida diet too.  After A YEAR on all of this with daily bone broth too, my brain fog cleared and my gut started to heal.  They say that 95% of your immune system is in your gut.  Perhaps part of your brain health is there as well?  (Now that last part could lend itself to some embarrassing teasing if I stay here too long.  Let’s move on!)

When dental pain increased, my nutritional sustenance all went into the VitaMix for about 6 weeks.  I became the master of the pureed diet and many soups, sauces, smoothies, etc.  My gut health slowed yet the convulsive episodes triggered by chewing diminished.   Gradually I got back to a chopped diet which is where I remain, 4 weeks post surgery for the extraction of two root-canaled teeth.  Healing continues.  It is wonderful to be able to chew better!

Then the convulsive episodes that had diminished some returned to their prior level:  2 to 5 hours per day.  So sad.  Over three years into this time of serious illness and still no one has figured out how to stop them.  I fasted for 24-hours, drinking only water and praying when my brain cells fired in the right direction.  The episodes stopped.  As intense hunger pangs overtook my weakness I decided to break the fast with an apple:  easy to digest and surely a boost to my low blood sugar.  I did not expect what followed.  One of the most violent types of convulsive episodes started my beloved hubby out of a sound sleep and sent me into an enlightened frenzy.  Enlightened?  Yes, this episode was triggered by glucose!

That night and the days thereafter I quickly ventured into a ketogenic diet.  I found a couple of Facebook Groups on the subject and the App they recommended to get me started.  A few days into the new direction a gal from one of the groups contacted me to clarify something:  was I using the diet for weight loss or medical reasons?  The grams of protein/carbohydrates/fats or “macros” are different with each type of ketogenic diet.  For both programs a person consumes very little carb grams yet for weight loss you eat more protein than fat; for medical ketosis to occur you must focus on more fats than proteins.  But it is in consuming very little carbs (I eventually got to 21 total grams) that the body is forced to utilize fats for energy instead of carbs.  The body then produces ketones that can often be picked up in a simple urine stick test or special blood glucose meter that includes ketones.  Ketones are hypothesized to stop or reduce seizures and may even help treat dementia in the elderly.

This week I reached ketosis.  My breath got bad and another tell-tale symptom appeared that is too much for even the transparency of this blog post!  It took me three weeks to get here and it could take a minimum of 2 months, usually 4-6 months, to see if the ketogenic diet will help me at all.  I am willing to try.  Heck, I already have a very restricted diet anyways.  And who doesn’t like (uncured, unsmoked) bacon?  The MyFitnessPal App is a gift from the Lord in managing this.  I would recommend it and their Facebook to everyone on a diet where a person must track macros.

So how about the blessings in all of this?  Surely there were some?  Indeed Gentle Reader.  You know me well!  You see I researched the ketogenic diet two years ago and periodically thereafter but could not find a local neurologist or dietician to guide me.  Close medical oversight including lab tests every three months are needed in addition to the periodic self-monitoring via urine or blood sticks.  Help has arrived just at the right time.  Briefly, check this out:

My first week venturing into the food plan, the gal who messaged me off Facebook just happened to be a retired nurse from the neurosurgery center at John Hopkins Hospital in Baltimore.  She manages her own true epilepsy in part with this diet.  Did you know that the only medical center in the USA with a dietary research and treatment center for adults with epilepsy is at John Hopkins?  I knew that and was ecstatic to spend that first Saturday night receiving mentoring from my “guardian angel” named Vicki.  Thank you Lord!

Around this same time I researched a foundation known to assist children with true epilepsy.  Maybe they would have some new information?  Oh yeah, a medical center close to our home in a smaller town had just hired a dietician to work with children and adults in all aspects of the ketogenic diet.  She had recently attended a conference with the Charlie Foundation and was added to their list of practitioners the week before!  She manages all of the referrals, orders for lab tests, and consultations.  And Mary is very sweet to boot.  Wow, Lord.

In many ways, in many long and exhaustingly arduous ways, this new treatment direction could be one more  bunny trail in the quest to recover from this wretched illness.  O.k.  Poor me baby.  Well then again, maybe not.  Sometimes you have to do more than one task to completely recover from a serious illness.  Remember the phrase, “recovery is a jagged line?”  The Ann Landers column about life being about the journey and not the destination?  The gratitude I feel in my heart for having met you Gentle Reader?  All of the computer skills I have learned about everything from ecommerce to social media?  The deepening of my relationship with Christ?  The revelation of the Godly character of my beloved husband?  And the fact that I did not die in all of those near-death experiences?  On this day I must say that I have seen the faithfulness and blessing of the Lord at some level every single day of the past 3 1/2 years.  His promises have seen me through and rung true every single day.  I will leave you with my fav promise from another time in my life of refining fire (and a side of bacon too please, crispy as in nearly burnt.  I like it that way!)  Take care, JJ

Jeremiah 29 11, Jeremiah, hope and a future, hope, plans, trust in the Lord, Christian hope, encouragin scripture, faith, ketogenic diet, chronic ilness, Christain and disability, Hope Beyond, Julie Horney

Jeremiah 29:11

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