Tag: non-epileptic seizures

He really cares: Part 1

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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

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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

I was made for you

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You looked at me with the bluest of eyes and said that we were going.

The ugliness of illness that had proceeded that moment held the rest of the day in the balance —

Obligations awaited us yet all the precautions, procedures, special preparations, and planning getting to this moment made no difference.

I could not move until you moved closer towards me and spoke into my moment of sickness.

And in a scene borne out of love that many will never find,

You gently lifted me to the edge of the bed so that I may dress, may push the mangled hair from my own eyes.

As if time itself breathed slowly from one moment to the next, I became able to sit up on my own again.

We chose the adornments to fit the occasion; we got me standing then walking forward.

I drank some water from a bottle nearby.  My brain moved more quickly and the next tasks came alive.

And as if what would be horror to a fly on the wall just minutes beforehand,

You tenderly called to me our next steps as we prepared to go meet the rest of our day.

We both had a bite to eat, groomed ourselves, and moved closer to the door:

The events of getting ready now no different than what has become the routine of trials endured many times before.

But this time it was your love that called me forth, moved me on; yes your tender words alone helped move me on.

And when we were along down the road a ways ready to meet the others,

I sat in awe of the life the Lord had crafted for me, for you.

Never would we have asked for heartache and sorrow that looked like this

Yet in a dreamy place would we have designed a magnificent love made just for me, just for you.

It doesn’t matter how we “getter done” when the Lord sits with us at His table

When His grace transcends the stuff of life, when I am carried by redeeming grace from both of you.

So when the happy couple says their vows at their own marriage supper in a day,

May they somehow come to know what true love lives like:  He looks like you dear one:  the Father of the Bride.

I love you Steve.

Just Julie

Bacon as a way of life

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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

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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;
2 Lord, hear my voice!
Let Your ears be attentive
To the voice of my supplications.

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

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

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

Psalm 130