Something old, something new

Soon I will come up on the seven year anniversary of when serious illness entered my life.  No, I won’t be kayaking in the Cedarville Reservoir to commemorate October 11, 2011!  That’s the day I contracted viral hepatitis and never really recovered.  It’s been a complicated journey since then, trying to get well.

Soon I will meet with my Doctor and see what he thinks about a new treatment with which I have been experimenting.  Recently I wrote about how devastated I was when  some vascular studies revealed no new information about why the convulsive episodes continue.  Over the next week I dwelt at the foot of the Cross of my Savior and He showed me some things I had not considered before:  many of the triggers of episodes have had something to do with my neck.  The CT Angiogram helped me examine this issue more closely and led me back to a comment by an ENT specialist back in January.  He said I should look into vagal nerve seizures and so I did.  That process led me to pursue specialized dental appliances that helped take pressure off of most of the cranial nerves involved in episodes and they started coming down within a day or two.  Adjustments in the appliances helped further then the improvements waxed and waned as time went on.  It is now 7 months later.  They are a pain to wear and look weird.  What else could be going on?

Soon I may have more of an answer to that question as I experiment with specific stimulation of one of the 12 cranial nerves:  the vagus nerve as it travels through my neck area.  A person has to be careful with this as it lies in close proximity, distal to the carotid arteries, thyroid, and parathyroid glands in the front of the neck.  Indeed vagal nerve seizures is a part of some forms of epileptic seizures and is treated with a surgically implanted vagal nerve stimulator.  A person has to have a diagnosis of intractable epilepsy or migraine headaches with treatment failures from trials of two types of medications before it is deemed medically feasible.  For me, no epileptiform activity was ever detected in EEG sleep studies even though numerous convulsive episodes occurred during two different studies in two different clinics.  I now wonder if they should have been watching the heart monitor not the EEG monitor when the episodes spiked.  Changes in heart rate and other vitals can accompany a seizure.  I have experienced this.  Were these factors recorded but missed in my clinical studies?

vagus nerve, vagal nerve seizures, vagal nerve stimulation, non-epileptic seizures, psychogenic seizures

Hopefully soon my experimentation with two different vibrating wands will stop these wretched seizure attacks altogether.  I found 2 very simple devices that I could carry with me, experimented until I figured out which ones work better at a given time of day.  The high-frequency wand makes me sleepy so I use it at night.  The lower frequency wand is more effective during the daytime should I feel the symptoms of a pre-tic episode.  How cool is this?  Yes, I still need to avoid certain head-and-neck positions due to other cervical spine issues, get back into either chiropractic care or physical therapy, and review everything with my primary Doctor.  I will continue wearing my specialized dental appliances.  In the meantime, it sure is nice having a better option than Prednisone (which I can only take in emergency situations!) to bring real relief for daily involuntary head-banging!

Will letcha know really soon, Gentle Reader if this all leads to something GOOD.  In the meantime, I am encouraged.  And grateful.  Thank you Lord, for bringing hope beyond what I can see once again.  JJ

 

From one mystery to another

Just when you think you’ve finally gotten on the road to something good the path can be blasted with a tempest beast of a hurricane, sending you smashing to the ground without a life preserver or anchor!  But do not despair.  The Lord Jesus Christ is still on the throne precious one.

Isaiah 55:8 New King James Version (NKJV)

“For My thoughts are not your thoughts,
Nor are your ways My ways,” says the Lord.

The close of our evening in the wee hours of the morning was exceedingly traumatic, puzzling, and desperate.  This sure is a mystery given that I have had some better blocks of a few hours at-a-time now that I am 3 months into IV treatments with antibiotics for chronic Lyme disease.  Even an iodine protocol and infrared sauna treatments appear to be promising adjuncts to my treatment plan.  Ahhhh, so much progress has been made these past 4 1/2 years yet still there are plenty of wacky lab findings:  we’re talking dangerously low amounts of key nutrients,  hormones, and healthy gut bacteria.  Yet I have less pain some days, improved clarity of thought, and an ability to do some housework or gardening about once per week.  The days largely spent bedbound have diminished from 4 to 1!  And my score on a chronic Lyme symptom scale has gone down from 73 to 46.  These are good!

James 1:2-4New King James Version (NKJV)

My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing.

Some call setbacks that occur over a course of treatment “herxheimer” reactions.  I call them a “healing crisis.”  That is, until the particular breed of hell is so traumatic that extra healing is needed from the crisis itself on top of the serious illness.  I’m talking about seizure attacks marked with screaming at the top of my lungs.  Let’s add writhing movements lifting me off the bed as if embodied by a demon and intense, hysterical episodes of wailing with gushes of tears.  What the heck is going on here?  Flashes of terrifying scenes fill my “mind’s eye” alternating with the blackest darkness you can imagine.  I press into the abyss with cries out to my beloved “Jesus” when I can, when I my mind allows me to do so.  He is my only hope.  Prayer mixes with shock.  Breathing, prevention of injury, and concern for my hubby nearby fill any cracks in my thought processes when they return.  Steve and I both leave the scene broken when the hell finally stops (tonight after over an hour had punched its way by us).

This all means that chronic/neuro Lyme disease is in my central nervous system and brain.  This probably means that the treatments are now changing my neurochemistry and affecting the structures of my mind.  This definitely confirms my worst fear that the path out of this hell to healing will be worse than the journey that got me here.  So wretchedly sad.  I guess I’ll just pray that the Lord strengthens me and Steve to get through it, pleading for mercy as we did tonight.  Somewhere out there will be a message to inspire others yet again tonight that is not the case.  This is a murderous mystery, killing every sense of sanity and magnifying many senses of suffering.  I am o.k. in this moment, thankfully.  It’s amazing what I can do sometimes on 2 hours of sleep just before the sunrise.

Psalm 119:147-149New King James Version (NKJV)

147 I rise before the dawning of the morning,
And cry for help;
I hope in Your word.
148 My eyes are awake through the night watches,
That I may meditate on Your word.
149 Hear my voice according to Your lovingkindness;
O Lord, revive me according to Your justice.

Hang with me, Gentle Reader.  We are not giving up.  We still have faith and still have hope.  You don’t give up either with the challenges in your life too, k?  We are holding out with the hope of blissful eternity for those in Jesus Christ and working our way back to the current day from there.  The suffering, the trauma, the horror just makes for a better ending when telling a magnificent story.  And when in my mind’s eye I also see the tear on the cheek of my Lord as He hung dying on a cross for me and you, I know that somehow, supernaturally, I will be delivered to a better place someday.  How about if we meet there?  So much goodness awaits us.  I’ve really got to tell you about the Summerwine bush that is budding from where I transplanted it to my compost pile, ready for its new home this Spring . . .  Someday it will burst forth into bloom (like me) once again!  JJ

summerwine, horticulture therapy, healing garden, healing, plants, deciduous, bushes, ornamental, flowering, blog, hope

 

Known in the Gates: Part 2, The Inside Story

One of the movies that has really resonated deeply with me is, The Breakfast Club.  Please see my previous post for the catchy theme song that underscored the film and one of the most poignant scenes that is also pertinent to Part 2 of this 3-part blog.

In Part 1, I described the isolation that I have felt when enduring a serious illness and how the Lord still gets me through the toughest of days.  His Word is my greatest comfort; the leading of the Holy Spirit and His presence are my greatest companions.  I ended with a question,

But how well does he really know me?

Sure, my Lord crafted me before I was born and set forth all that I would be, all that I would endure and accomplish.  His Words in Psalm 139 declare that He knows my “innermost being.” Does this include the longing of my heart as well?  If it does, why has He allowed me to become so dreadfully isolated?

Maybe someday I will get to see why so many family and friends have chosen to “walk on by” me as it says in the theme song of The Breakfast Club.  Have I not been a good friend?  Maybe I was not.  I remember about two years into this ordeal someone contacted me and asked me about getting together for coffee.  I replied “yes” and then I never heard from her again.  My spirits had soared then crashed and burned.  For believers in Jesus Christ, the answer to the “why” question is usually left for eternity.  We simply may never know “why” this side of heaven.

Those of you not living in isolation may not have any idea how much Satan uses this experience to tear a person down.  He can prey upon all of our negative emotions and be allowed to create havoc in our lives.  (Yes, ultimately God is still in charge!)  Yet I know that it’s really not about resisting Satan or about losing the people in my life.  I resist the devil and his demons with the sword of the spirit:  the Word of God as described in Ephesians 6:10-17.  People come and go in our lives and that is the normal ebb and flow of life.  It really is about my response to the taunting, the loss of these relationships.

My challenge has been particularly great due to the effect that this chronic illness has had on my brain.  Responding to Satan’s lies and the loss of relationships has been affected by the change in brain chemistry that came with chronic illness.  My ability claim victory in the name of Jesus Christ and fully embody the companionship of my Lord have been affected.  Satan’s lies have been magnified.  My social skills have eroded.  My ability to think clearly has been altered.  And I struggled to override these skill deficits but could not, even if I tried.  Allow me to explain.

Only recently did we discover that excessive neurotransmitters called catecholamines (epinephrine, norephinephrine, and dopamine) are likely contributing to my mood changes, thinking and communication skills in addition to possibly causing the convulsive episodes.  This is happening due to the expression or “turning on” of polymorphisms (SNPs) or breaks in several enzymes that help form my DNA code.  The DNA code is the instruction manual or blueprint from which the body functions.  Everyone has a unique combination of broken SNPs that get turned on by illness or significant stressors in the environment (such as exposure to mold).  For me the factors included everything that I have written about in this blog:  biotoxin illness/hepatitis, latent Lyme disease, Candida toxicity, mold illness, infected root-canaled teeth, and mercury toxicity.  That’s a lot of stressors!  These illness and environmental challenges became a trigger for disaster.  I even have the data to prove it, all of it!

methylation cycle, Dr. Amy Yasko, SNPs, Lyme disease, mold illness, mitochondrial, mito disease, methylation, B6 deficiency, CIRS, mold illness,

One version of a methylation cycle from http://ihateticks.me/2014/10/06/methylation-for-dummies/

For some people this process manifests as a Mitochondrial Disease or a disruption in the methylation cycle inside the nucleus of the cells of our bodies.  My thought life was affected.  My mood was affected too.  I had waking and nightly nightmares not based in any reality past or present.  Those were internal things that my beloved husband, Steve, and the healthcare community could not see very often.  Several healthcare practitioners labeled me as having a mental illness of sorts, often without even completing a mental status exam or workup!  Gratefully, Steve believed me.  They all saw the wretched convulsive episodes that have plagued me for hours every day for 3 1/2 years.  And Satan was allowed to enter into the whole dynamic with lies and attacks that I will definitely write about at another time.  Absolute mental and physical wretchedness.

But now the gig is up!  Two days ago I woke up from a lovely nap after starting to treat this condition.  I had my first 16 hours seizure-free!  It’s as if someone turned on the lights in my brain!  Not only do I have a formula for correcting the brain-part of the process but the prayers of deliverance against the spiritual warfare are taking hold.  The cascade of negative mental, physical, social, emotional, and spiritual suffering is beginning to turn around. Lord willing, I am going to get well!

My Jesus knows all about every aspect of what I have described here.  He also knows the desires of my heart.  How do I know this?  My prayers long before this illness began was to become whole.  I had been broken by the consequences of a hard life:  events out of my control.  Many times during trauma the Holy Spirit would bring encouraging scripture to me that kept me moving forward.  Yeah, finding hope and finding myself has come through horrible, ongoing isolation and trauma.  I have worked hard to recover from so much suffering in my heart, my mind, my body.  Each step of the way has been both painful and meaningful.  Yet I tell you, Gentle Reader that nothing has been wasted!  I have learned to trust the process in EVERY CIRCUMSTANCE under the protection of my Lord and Savior, Jesus Christ.  And now the desires of my heart are being realized.  Cool beans.

So how does one rebirth the desires of one’s heart?

Jer 29.11b

To be continued in Part 3 . . .

He really cares: Part 1

The initial blog title rattling around in my brain for the last 24+ hours was, “You are THE ONE who really cares.”  After all, when each of us is alone in the midst of a trial (particularly when it is medical), it is only you that bears the greatest burden of the suffering.  Others offer comfort, prayer, helps of various levels, and if you are lucky will actually stick around for more than a few moments.  But it is you, one and only, who must bear the pain . . .  And that can be frightening to say the least!

Rather than rant about what to do with fear, give platitudes and verses with which to train your mind, and otherwise avoid ministering to the weeping heart, I will simply offer this:

Just lay your head on the lap of Jesus.

More than anyone, Jesus Christ knows what it is like to be killed, pained, abandoned, betrayed, falsely accused.  He is the only one Who can be with you as the Holy Spirit, in your time of sorrow from its beginning until its end.  He will never leave us or forsake us and always be there if we but call upon His name.  He is worthy of our

praise

tears

anger

weakness

alms

thanksgiving.  I was reminded of all of this just yesterday!

About 3:30 p.m. in the afternoon I was abandoned in a treatment room of my doctor’s office.  The nurse practitioner (NP) had left the room after writing an order for me to get IV fluids and after “catching” me collapse during a short convulsive episode during the appointment.  After all, that’s why I was there:  to document the crisis, get the orders, and head over to the hospital for treatment thereafter.  I was sitting there kind of dazed.  Soon after she left the room (and after another nurse came into the room to revise the scheduling of some other appointments), I began to list to one side.  There was a chair next to me with my purse and water bottle resting on it.  The weakness increased and a few inches at a time, I began falling to my right side, coming closer to the purse on the chair.  I could not speak.  I could not brace myself.  I could not do anything but be glad there was a chair next to the one upon which I was sitting so as to break my fall.

The next 20-30 minutes were very ugly.  My body collapsed fully onto the chair next to me.  My face smashed into the zipper of the purse while my glasses and cover-style sunglasses pressed into my face.  I looked straight ahead with my head rotated completely to my left, straining my neck most uncomfortably.   The front of my right ear was crushed underneath me on the purse whilst the back was free-falling unsupported; the back of my head pressed into the vinyl backrest of the metal chair.  Not exactly pillow material!  My right hip was twisted and pushed into the thinly padded, vinyl seat of the chair upon which I was sitting.  The ringing in my ears had already increased with the headache that had been working its way into action over the past hour.  Legs cramping, toe tips burning as much as my finger tips, and feet struggling to keep contact with the floor to stabilize my position . . . herein I would remain for the next 90 minutes.

I thought about many things.  First, I prayed.  I prayed again and again and talked to God about many things.  Will they be coming soon?  Do I hear them coming?  Was I expected to go out to the nurse’s desk after the NP left the room or was she coming back with more instructions?  I really could not remember since I was already in the brain fog of recovering from the earlier episode that she had witnessed before she left the room.  Surely the staff would notice that I had not left the room yet?  Or maybe not.  I waited in that same treatment room (#4) TWO HOURS the last time I saw the NP before I stepped out to mention that I was in there waiting.  “I didn’t know you were in there waiting for me,” she explained with her soft, sweet voice that I would learn never changes even in the midst of an emergency . . .

Time passed.  It was hard to ignore the searing pain of the two pairs of glasses being pressed with my full upper body weight into the side of my nose.  I could not move to get more comfortable.  I still couldn’t speak.  I tested this out and nothing happened.  In a while when I tested it again, my arm would start shaking; if I tried my leg, my leg would start shaking.  This is what I call, “neurological collapse” at it’s finest.  I learned on in a Catamenial Epilepsy Facebook page that in true epilepsy (which I do not have) has a name for this phenomenon called, “Todd’s paralysis.”  It can go on for up to 48 hours and mimic the signs/symptoms of a stroke.  Todd’s paresis usually resolves on its own without any residual effects.  I have experienced this complication at least once per week for the last 3 years.  Gratefully, most of the time the residual effects for me resolve within 2 hours, at home, in the evening, and within reach of my beloved husband!

There is nothing I can do to quicken the process of recovery from an episode.  It takes what it takes.  Knowing this I tried to calm myself down and focus on my breathing despite my twisted posture.  My rib cage was constricted so I did what I could to at least slow down each inhale, each exhale.  I did what I could to keep my neck and shoulder muscles tensed a bit so as not to twist my upper torso any more extremely than it already was.  I tried to relax the crushed tissues on my face so the pain would subside.  This worked poorly.  Suddenly the voices beyond the closed door seemed louder.  Then I heard the doctor’s voice.  This would be the time to try and vocalize something for help.  My voice was weak.  help.  Help.  I tried many times.  Probably no one in the same room with me would have heard those first cries.

I redoubled my efforts.  I took a deeper breath and vocalized a little louder, “Help!”  Then I rested and made more attempts, “HELP!”  Surely the door cannot be that thick!  I can see a crack at the bottom between the wood of the door and the low pile carpeting.  “HEEEEEEELP!!!”  I cried again.  My nose was running from the first time I had started to cry, dripping onto my purse.  Fortunately it is made of an outdoorsy, washable fabric.  Your mind thinks of all kinds of things when you are trapped.

To be continued in Part 2

It’s more than a delicate balance

As anyone who likes to (or needs to) cook knows, it can be a tough balance to make a recipe taste just right.  The host of your fav cable cooking show says to add a pinch of salt and pepper as you watch her grab easily a fistful of seasonings.  Ah ha!  So that is why version mine comes out differently than yours!  Just ditch the online recipe on her website and fly by the seat of your pants!  Taste, taste, taste and make the dish all your own, eh?

I don’t tend to make meals using recipes anyways.  With a limited diet and having to make a wacky version for me and a “normal” one for my beloved, I would become too frustrated trying to follow the masterpiece designed by someone else’s reality!  I just start with what I CAN eat, add more salt with my eyes closed then put one of my go-to seasoning mixes on Steve’s version.  It works for us.  Well most of the time, that is!  And when it doesn’t, that is what salsa is for right?  (O.k.  I know I have offended someone out there now!)

My health situation of late is kinda like the same delicate balance.  Add too much zinc for too many days in a row or take a new supplement or med for more than 3 doses and whammo (!) I get burned at the “steak.”  There’s little more than dog food left of me afterwards.  Gratefully my Doc does exhaustive lab testing to try to coach me in the right direction.  But now even labs cannot predict the outcome anymore.  I seem to react to everything.  It’s worse when the pharmacist of an independent lab starts making suggestions too.  So I try this and that.  Oh how I want things to work out well!  So far, it has not.

I am my own worst enemy in these scenarios.  The results aren’t even back yet for the female hormones that are at a mystery level since going through menopause.  I went through menopause during the almost 4 years of this illness and these tests for me are way out of date.  The significance of the hormones is that a goodly number of women (who have true epilepsy) have worsened seizures during menopause and others have reported a new onset of what is called “catamenial epilepsy.”  While I do not think that I have epilepsy per se and all the fancy labs have supported this, I do find this course of study intriguing.  I joined a couple of Facebook groups on the subject and have hunkered down into some new online research.  Then of course I re-started a tiny bit of progesterone on my own to see what would happen.  Yeah, I know that I should wait until the lab results are back in a total of 6 weeks.  But heck, at the rate I have been going, 6 weeks means up to 210 more hours of convulsive episodes!  Why wait?  I am going to go through hell anyways . . . .

Dr. Erwin Leutzer of Moody Bible Institute teaches that, “when you are going through hell . . . DON’T STOP!!!”  Oh yeah.  That fits for me.  Not sure what to do with some of the symptoms that are emerging though.  Clearly this will need professional tweaking at some point!  Do ya blame me for trying?  What if I finally stumble upon the resolution to this nightmare?  There are so many labs that are off now and the convulsive episodes have escalated to 4 hours or more most days, I just figured that it’s worth a shot . . . worth disrupting the status quo.

The decisions of life can be a delicate balance over here sometimes.  Do we continue with travel plans when I am in the throes of chronic illness?  For us, the answer is yes.  We just adapt things a bit and get on down the road.  Life goes on.  In due time, if it is the Lord’s will, I am going to be well.  In the meantime we will use the portable heater in the Tin Can Ranch (aka travel trailer) instead of the noxious propane mini-furnace so I can be with my beloved overnight at his kayaking competitions out of town.  In the meantime I’ll freeze portions of meals to ease food prep when Steve needs to pitch in for me.  In the meantime I will fold laundry when my brain stabilizes in the wee hours of the morning and scratch the ears of our pup who gets more fractionated sleep than I do.  In the meantime Steve will head into work later to make up lost time and we will be grateful for his flexible employment.  And so it goes, a balancing act on steroids that we have come to master, one ingredient at a time!

Gentle Reader, I’ll bet you understand the need for balance with the stuff of life. Let’s look together with gratitude that we do have some choices even in the worst of situations.  For those who believe in the Lord, Jesus Christ, we know that all things, delicate and less so, will work together for those who love the Lord and are called according to His purpose.  It’s His promise from His word in Romans 8:28.  That is because He knows us and loved us before we were even born.  He knows and cares for all of the details of our lives!  (Psalm 139)  And He knows what choices we will make.  As for me, I will aim to make choices that keep me moving forward, aiming to win.  Sometimes things will be out of balance for a time.  Yet with my eyes fixed on Christ, leaning on His Word and the leading of the Holy Spirit I will run my race of life with endurance:  endurance the produces hope (Romans 5:4) and endurance to finish well too!  (Hebrews 12:1)

surf ski, surf ski racing, river racing, USCA, kayak racing, unlimited class, competition, drafting, Epic kayaks

My River Bear leading in a United States Canoe Association event last year. Gooooo Steeeeve!

Never sacrifice sweet victory for a need to stay comfortably in balance though.  Attend to the tasks at hand with wisdom then get out there and LIVE!  Do not stop!  May we both finish well my fellow sojourner.  The crown of glory awaits!

That is all.  JJ