Tag: seizures

The Boomerang Effect

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The wooden angle sitting on the mantle was a souvenir/gift from the Land Down Under.

To toss it into the air and have it return in-flight to you is a skill few master.  We didn’t!

Instead we dust if off because it looks nice:  forming a paradox in design and practice with which I can relate tonight.

Here’s why.

boomerang, wooden, life, metaphor, like, things come back, return to you

A trip to our local hospital began after much preparation and somewhat tense spirit too.

Would the appointments go alright such that I could return home and rest before a party this evening?

I brought with me several “rescue remedies,” food, water, favorite medical supplies, etc.

Having my port flushed last month went reasonably well so this one today should too.

Not.

I’d been battling Small Intestinal Bacterial Overgrowth when some labs indicated liver stuff too.  My Doc was willing to order a test over the phone and both would be today.

The liver/gall bladder/pancreas ultrasound could irritate a tender tummy for awhile.

Worse came a “tic attack” with the realization that there are several tender spots.

Gratefully, recovery came quickly and I was off to the outpatient clinic for the flush.

The nurse completed everything slowly as I’d requested; my preparation was flawless too.

Can you ice your chest wall while having an ultrasound, apply numbing cream before leaving home, and finish your breakfast/morning supplements in the waiting room between appointments running only 8 minutes late too?  Sure you can!

But 8 minutes past the hour was too late.  With everything that went wrong, the process would take OVER SIX HOURS!

The nurses there are saints as they let me sit in that treatment chair forever if needed.

Something about that 1 1/2 inch needle plunging into my port never has bode well with me.  Or was it a slight change in tissue gradient from fluids and a blood thinner going in?

The procedure was completed and I thought I was going to be o.k.  Then I started shaking.

The shaking continued for over THREE HOURS!  Several convulsive spikes joined the mess.

Gratefully my beloved Stevers was able to leave work early, go home, and bring me an emergency dose of steroid medication at the hospital.  He was my hero once again.

Within 15 minutes, the episode stopped.  I lain in that recliner chair in shock for a long while.  I wept some too.

We moved to the lobby where I devoured my last bit o’ snack and began to revive.

Once home, I rallied to help Steve get out the door to the party with gifts, dish-to-pass, yada, yada, yada hoping to join him later.  Another FIVE HOURS LATER, I did.

Last year I was too sick to attend a gathering with these friends from out of town.  My beloved sent me a video back then of the kids opening their gifts.  Bittersweet.

This year I got to see most of the kids for a few minutes and all of the adults.  Twas sweet.

Another victory was being able to visit in a home with a history of mold damage.  Huge!

The First Defense Nasal Screens (See Julie’s Favorites), open windows on a cool Spring evening, and progress in reduced reactivity all appeared to help.  Thank you Lord.

My plan was to stay in the moment, just enjoying the light banter and updates from all.

No matter that no one asked me much about things.  I love them in Christ just the same.

So I live a Boomerang life, moving from wretchedness to sweetness often within hours.

I could brood the day long or keep my pretty tops sitting in a closet like that dusted toy.

Instead if my Lord grants the where-with-all to get back into life, moving ahead, slightly forward,

I will trust in His strength.  I will do it.  I will get there.  And like the boomerang thing, the trip back will cancel the trip out that maybe wasn’t so good.

For we will face trials in this life, those of us who believe in Christ Jesus. The real question remains:

Will we stay on the shelf when the flippin’ craziness is done?  Nope.  Not me.

I will get out and try to have some fun!

Winning through losing

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Winning through losing is the title of an article by Pastor Sandy Adams in the Summer 2017 issue of Calvary Chapel Magazine that touched my heart and lightened my burden this day.  Pastor Adams told the story of the Apostle Paul of the Bible who, after coming to faith in Christ, never had a “thorn in his flesh” removed despite praying three times.  He describes it as follows with a passage from 2nd Corinthians, Chapter 12:

Paul learned to view his thorn as God’s gift.  He rejoiced in the weakness it caused; for it became God’s opportunity to demonstrate His supernatural strength.  Paul rejoices in verse 10, “Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake.  for when I am weak, then I am strong.”  He took pleasure in circumstances where he was no longer in control.  A weak Paul empowered by God’s grace was more effective than a strong Paul at peak performance.  Paul was confident that God’s grace was sufficient. (p. 52)

Pastor Adams goes on to encourage us that the Lord’s greatest work is in our times of defeat:  a work that He intends to do all along.  “Rest in this:  When we are at our weakest, God makes us strongest.” (p. 52)

It is my hope that my writings here will exemplify this teaching.  I have struggled greatly these past few weeks with episodes of physical and spiritual darkness too ugly to describe publically.  To think that I may never be free from daily convulsive episodes is a burden to great for me to bear in the midst of these setbacks.  At the same time, I continue to have a sense that perhaps soon they will stop.  Should I not hope that they stop?  I think not.  My calling is to remain faithful to the moments in which I find myself:  doing that which the Lord wants me to do, discerning the leading of the Holy Spirit, dwelling in the presence of my King often.  If that means being obedient to the Lord’s call to get off the couch to take a rescue remedy while my head is banging, my legs aren’t working right, and pressured vocalizations are emanating from deep within my loins then I will trust that my Heavenly Father will keep me safe while I do so.  It’s amazing how supernatural power overcomes my own inability to move my body correctly.  His power is real!

I recently completed a course of antibiotics to treat a gut infection that may have a connection to my brain symptoms.  The medication hurt me with damaging side effects.  After 10 days I called my Doctor and transitioned to the first of two herbal protocols that would follow next.  Tomorrow morning I will start the second of these two plans including dosing at an elevated level of an antimicrobial that I have largely tolerated in the past.  I am hopeful that recovery is possible with this new plan.  After reading Pastor Adam’s article today I will remain mindful that there is purpose and power in every moment of this journey no matter the outcome will be.  The power of Christ has indeed rested upon me in my weakest, most breathless states.  I have trusted Him completely albeit not perfectly.  He has ordained these days for me revealed in other levels of healing that I cannot disclose right now:  the longest held desires of my heart have been addressed, have been comforted.  Through seizures!

In time, the Apostle Paul saw his thorns as a gift.  “Imagine, a thorn gift” suggests Pastor Adams.  “When Paul accepted his thorn as a gift, God gave him strength.”  As I have come to my own level of peace with this serious illness, I have received many gifts as well.  Another great blessing has come from my beloved husband, Steve’s, unfailing love, presence in the darkest of times, prayers, and gifts of the spirit.  He is often my Jesus with skin-on, so to speak.  This morning he anointed me with oil as he prayed for me in the aftermath of incredible difficulties.  Oh Lord, please bless this man, this instrument of your peace!  Help me to love and serve him as you would have me do so with your strength, with words from You to encourage his heart.

You know I never really thrived when posed with a competitive situation at home, with my peers, at work, at school, or in most places in life even though I know that it is o.k. to strive for excellence in all of these settings.  I usually fell short before reaching the prize.  Perhaps my focus was on the wrong place?  Winning through losing brings us to the eternal finish line, the one that matters most, in second place behind the Lord, Jesus Christ who will share in the victory that He hath created all along the proverbial races of life.  These are the ones that truly matter.  The ones where we let Him carry us or infuse us with His grace, His power as we cross over into eternal glory.

Now that’s a medal I do want to take “home.”  Lord, in your mercy, help me to finish well!  JJ

2 Cor, 2 Corinthians, 2:9, weakness, grace, sufficient, Christ, power, overcoming trials, Bible verse, encouraging

 

 

We Will be Fine

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The plot thickens, my angst flares

Why more nasties when hope came near?

I thought we had it, the Doc and I

But my body freaked out putting me in arrears.

Three infections at once

With more at bay for now

Is much to address

Each in it’s own particular way.

Many calls at night

Hubby running here and there

He is so tired as I

Writhing on the sectional in despair.

Call it die-off

Whatever you may

Take this binder and that

With another remedy in the fray.

I have no idea

If I will ever catch up

The beasts within me win

Or do they?  It is not yet clear.

My eyes are burning

My tummy aching with nausea

The pain is less, hoo-rah!

Unbelievable at a time like this.

So what will I do

To get through another day?

Cancel everything again

Sit tight and hold on as we go this way.

Rougher than most healing

The prize won’t be for wimps,

We elite patients stand strong

In the arms of our Lord holding us up.

Keep your eye on the prize

Solve the problems that arise

One day all will be gone

For in heaven we will be fine!

Rev 21:4, Revelation, no more tears, no more weeping, little girl, hope, trials, scripture, coping, help, suffering

 

Treatment Update

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Time for a treatment update and some good news!  Yes, things aren’t as bad.  🙂

My major focus with my health since I started this blog has always been to stop the residual, daily convulsive episodes that have plagued me for over 5 years.  More recently my treatment plan has centered around treating a gut infection that appears to be related.  Some call it Small Intestinal Bacterial Overgrowth (SIBO) and specifically for me it might be due to a clostridia species infection.  Regardless, the gut-brain connection is real and affects neurotransmitters in the brain.  A myriad of neurological issues can result when these chemicals are deficient or out of balance.  Specific medications and nutritional supports directed by a functional medicine doctor in the past nor my genetic coach/naturopathic physician more recently seemed promising but did not help.  Over the past 5 1/2 years, my medical doctor and I have also addressed or ruled out a plethora of other avenues (biotoxin illness, Lyme disease, mercury and lead toxicity, nutritional deficiencies, dental factors, epigenetic expression, pain/structural complications, the endocannibinoid system with CBD oil, psychological issues, ruling out brain or cardiac anomalies, sleep issues, etc.).  But what about the dull ache in my tummy?

SIBO, small, intestinal, bacterial, overgrowth, abdominal, pain, tummy, stomach, appendicitis, clostridia, infection, test, OAT

I did an experiment with a hand held far infrared (FIR) device designed to treat pain.  I used to sell the KenkoWave when I was an Independent Wellness Consultant for a Japanese health technologies company called NIKKEN.  Pain in the right lower quadrant of my abdomen has persisted for over a year.  A comprehensive medical workup yielded no clues so I decided to shine the FIR light onto my tummy.  After just 2 minutes, I had a 2-hour, violent, non-stop convulsive episode that would not respond to any remedy we tried!  I hung on for dear life!  I experimented some more the next couple of days with the same result:  an hour of non-stop episodes after only 60 seconds!  Holy cow!  Maybe the cause is in there somewhere?  By this time I had gotten the results for the THIRD SIBO test coupled with an Organic Acids Test (from Genova Diagnostics and Great Plains Laboratories, respectively) with severe and high markers respectively.  Over the next month, a plan of attack came together.

Somehow treating SIBO last year with an antibiotic (that stays in the gut called Xifaxan) was not enough to solve the problem.  The current round began with about a week of a powerful bio-botanical followed by a nasty antibiotic called Flagyl or Metronidazole.  The drug makes me nauseous so I take another pill for that.  I am not fond of drugs but at this point I will do it if it KILLS THE BEAST!!!  Gratefully, the abdominal pain has already come down.  This leads me to the good news:

  • One-point reduction in the 1-10 pain scale.
  • Less reactivity to noxious stimuli and pain that used to trigger seizure attacks.
  • Shorter episodes that are generally less violent.
  • One less episode most days at my most vulnerable times:  falling asleep or waking up.
  • Clearer thinking for some part of more days.
  • Less stress, fear, sadness, and anxiety.
  • Fewer headaches.
  • Less food sensitivities slightly expanding my food choices.
  • Increased ability to tolerate more supplements prescribed by my doctors per my test results.
  • Ability to work in the garden about once per week.
  • Ability to get to bed before midnight up to 3 nights per week.  (I often stay up late to avoid seizure attacks falling asleep.  Sometimes this has helped in the past.)
  • Movement in a better direction on several laboratory test and scan results.

The changes also appear to have been impacted positively by taking Low Dose Naltrexone.  Persons with autoimmunity diseases and fibromyalgia often use it to reduce a variety of symptoms.  I did not do well on a different dose in the past but I believe the Lord led me to do some research and prompt me to try it again at a lower dose.  This started the list of improvements noted above with the reduction in chronic muscle and joint pain.  Praise the Lord!  Treating the gut infection followed and here we are.

I am encouraged and hope you are as well, Gentle Reader.  Lord willing, I am going to get well!

If you are someone reading this who is struggling with severe illness, please let me know so I may pray for you.  And please don’t give up!  If I can make it through hours per day of head-banging, you can make it through what you are dealing with too.  You are not alone.  Keep trusting in the Lord to see you through each moment, to guide you and comfort you as only He can do so.  He promises to never leave us or forsake us and will always be near if we but call upon our Lord and Savior, Jesus Christ.  He sees us on our bed of sickness.  He hears us.  And one day He will come again in glory for us, taking us to a place where there will be no more suffering or weeping.  He promised!

Thank you for following my journey dear one.  Take care, JJ

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Dealing with the trauma of illness

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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)

7 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?

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