The Day is Never Really Wasted

Missing my Dad.

Closing my online jewelry shop.

Cancelling a dinner invitation for me with new friends.

Spending the morning and evening in bed with complications of illness.

Questioning the utility of a new treatment before it really has begun to make a difference.

Perhaps you can see where I am going with this?  No where productive, positive, encouraging very fast.  These are the kinds of days when I question the value of each breath (that almost stopped twice today).  These are the evenings when I wonder why I try to plan anything away from our home anyways?  These are the days that I cry a little more than usual.  And these days are necessary, really, to grieve and move on.

When I worked as an occupational therapist in rehabilitation, we often told our patients that, “recovery is a jagged line.”  Oh how I have found that to be true these past 3 1/2 years!  Looking back to the beginning and middle of this period of time, there were many times when I am sicker than I am now.  There were many unanswered questions, new treatments to try, expenses that exceeded our income, strains on all of my relationships, and lifestyle changes that seemed too much to bear.  So many questions came to mind as the weeks extended into months and years:

I wondered if I could continue to get to know the gals I’d just met at my church or my husband’s adult children, make any new friends, or succumb to the ill-effects of isolation instead?  How much suffering could my body endure without permanent damage to my brain, neck, back, or other bodily functions when the convulsive episodes were so violent?  Would I embarrass myself in public, get into an accident in a public place, or be found on the floor some evening by my beloved husband (who was already stressed and sleep-deprived)?  Why on earth did I have to endure such hellish nightmares, flashbacks, and heart-wrenching grief at this time in my life when I had worked so hard to become free of so much sorrow in my past?  And most of all, would anything good come from all of this:  would it be wasted time and effort after it was all over?

Some of these questions have been answered by now and some have not . . . yet.  I have made many new friends.  The process of getting to know my hubby’s children has been slower than I would have liked yet it probably is for the better; we are living a long-distance from all four of them which makes everything a little different too.   My mind has actually become clearer with the extreme dietary measures, reduction in mercury toxicity/dental issues, and healing of my gut (since the brain and gut-health are related don’t ya know?).  The physical consequences of illness will require some more treatment soon but at least my weight is stable and the overall deconditioning has still allowed me to perform most of my activities of daily living.  Further, when I felt sick in public or driving down the road, I was always able to rest in my vehicle thus avoiding an incident, gratefully.  These last two are amazing to me:  the Lord’s angels must be protecting me when I am away from home.

Steve and I have found ways to cope with the nightly convulsive episodes, sudden physical collapses that require assistance with my self care, and challenges to our intimate life on occasion.  It helps that Steve is wonderful!  It helps that he relies on the Lord and fellowship with strong believers to see him through this season of our lives together.  His faith strengthens mine too.  Although we can’t be together as much as I would like to, it helps me to know that I can trust him and look to him for spiritual direction, spiritual leadership.  This is God’s plan for the home, for marriage.  And as that design plays out between us, I know that the Lord is strengthening me too.

The Lord has never left me or forsook my faith in Him.  Even in near-death experiences, demonic attacks (and there have been more than I can count), and times of deepest despair, my Jesus has carried me through it all.  The spiritual peace that developed certainly has served to clear my mind, bringing me to a place of clarity I had never seen before I got sick.  Renewal of our minds is a gift and a promise only the Lord can give as we read the Bible.  I am grateful for His work through this process.

I really don’t know if looking at the female hormone/menopausal connection with the onset of seizures (and its related testing and treatments) will be fruitful or not.  Is it catamenial seizures?  I do know that I am probably going to make some more new friends trying to figure it out!  Some more new connections will also be made in the synapses of my brain as I study a whole new body of information.  Letting go of my hobby business today and getting focused on a more professional venture will challenge these new skills, quite possibly moving me from this disabled state to one of productive living.  Oh how I hope so!  This incredible experience has inspired a new product that I invented and eBook that I am writing.  That is cool, eh?  Yeah God!  Perhaps things will come together just as they need to and when the timing is right?  This season of time will have served its purpose; it certainly will not be wasted.  This Father’s Day will just be a microcosm of the larger picture with all of its days, its parts playing a role:  good, bad, and ugly too.

And in the end I know that the good will outweigh the other two.  How compelling of a story would I be able to write if everything was always hunky-dory?  Nope.  It would be boring.  On the stage of life, we are to live fully no matter what happens to us.  We are to live like the sign on the wall of the therapist’s office that I saw when I was searching for meaning in my life at just 24 years old:

Bloom Where You are Planted, trust in the Lord, overcomer, overcoming trials, Christian response to, faith in Christ, hanging tough, Bloom, Christian blog

Yeah.  Evelyn at Catholic Charities had it right.  And the gardener in me wasn’t even awakened yet when I read that banner!  The motto of that poster has encouraged me over and over again, becoming the foundation of my life’s work as an occupational therapist and helping me to re-invent my career a half-dozen times.  As a believer in the Lord, Jesus Christ, I can see that He is the God Who uses all things for His glory.  Someday you and I will get to see how these gnarly threads of our lives have woven together to create a beautiful tapestry that characterizes the life of one surrendered to Christ.  With that hope I can face tomorrow and all that it brings.  With that hope I submit to the will of my Master Gardener, my Lord.

With that hope you can too, Gentle Reader.  Bloom!  With love, JJ

High CBD Hemp Oil and Me

Scientific Review of the literatureSo we had a great go of it, HCBDHO and me.

This past winter I gave it a try for about 3 months after discovering some research linking reduced seizures to consumption of a particular type of cannabis oil.  When I found out that there is an industrial hemp oil with only trace amounts of THC and that it would be legal for me to purchase it in my State, I purchased a bottle online.  I worked with the manufacturer and a couple of Facebook groups on dosing.  My initial results were very encouraging!

Within 2 weeks I required increased drops of HCBDHO to receive the same benefit.  This fit the profile of many other users of the product.  Some required nearly 1/2 bottle to stop their seizures even if a child was taking it.  There are lots of details here so I refer the Gentle Reader to previous posts by searching CBD oil on this site.  In general as time wore on, the benefits diminished no matter what the dosing.  Also in time I started having  bad dreams then bizarre nightmares.  The nightmares frightened me.  I could  not figure out why they were happening!  Then I read that some folks are sensitive to even trace amounts of THC:  the compound in cannabis oil that creates a high when taken in products that have a higher percentage of this cannabinoid.  Well I wasn’t having a good time at all!

Eventually I stopped taking HCBDHO altogether.  Now that I am sensitized to it, I do not intend to take it again.  The risk of altered thought processes in my precious sleep (that I desperately need to recover from these wretched daily seizure attack episodes) overrides the small improvements that remained after 3 months.  The benefits did not outweigh the risks.  I am majorly bummed that it did not work for me.  Nothing has worked for me.  No combination of things have worked for me.  I cannot tolerate treatment that works for others without ramping up to violent convulsions.  Detoxing is impossible without noxious, severe side effects.  Talk about being boxed into a dark corner without a flashlight.  Will hope ever shine through again?

Sure it will.  Lately I’m experimenting with magnesium threonate and may try a particular brand of Tahitian Noni Juice.   The latter helped Kurt and Lee Ann Billings, the authors of Mold:  The War Within, who did not do the typical protocols of cholestyramine, activated charcoal or benonite clay to get well.  Yup, all of those three caused me noxious, severe side effects as well.  Sish.  I am very glad that there are new things to try despite the dead ends of my medical team at the moment.  Thank you Lord that you are always my hope with or without Tahitian Noni:  my forever guiding light Who uses the hardships for Your glory . . .

So for those of you considering using high CBD hemp oil (from industrial hemp) or other cannabis products (from hemp classified as medical marijuana), I encourage you to learn all you can at informational sites such as the following Scientific Review of the research literature:    You are also invited to “Like” my facebook page which contains all of the pertinent research that I did when making my decision to try HCBDHO.  The articles include the legality of industrial hemp products and the difference between them and medical marijuana.  Here’s a link to get you started:  Seizure Free Zone on Facebook

May the Lord bless you on your journey too, JJ

Benefits of Hemp Pic

When you find your voice again

Perhaps it is a silent presence, a type of mindfulness that can speak as loud as a mountaintop yodel in a life-changing moment.  Or maybe you must shout it out, screeching through a resistant case of laryngitis just what is on your mind.  Then there are those measured words spoken through gritted teeth; oooooh, I hated when my mother uttered those when I was a child!  A crazy person makes sense only to his or herself when the disemboweled utterance emerges from the trouble soul within.  And the most agregious is the spine-tingling barbs of an angry person that can cut to the heart every time.  Sure wish I had more of the first one and less of the others in my history!

A gentle answer turns away wrath,
    but a harsh word stirs up anger.  (Proverbs 15:1)

Yes indeed.

The seizure attacks came quickly this evening as soon as my face hit the head of the bed, elevated with folded blankets to promote sinus drainage and ease the chest compression of a recent infection.  My left arm was tucked along my left side with my head turned to the right as I lain partially face-down.  This position causes less neck and shoulder pain so it is often my go-to position when I sense the episode ramping up.  The head-banging and shoulder trauma are minimized but the wrenching of my neck is nasty.  Oh well, that’s what the chiropractor is for, right?  Sigh.

Eventually I screeched out some “help me Lord” utterances with what was left of my voice box today.  That came whilst straining to cry out to my Jesus with an acute illness on top of the mysterious seizure-like tics that plague me every morning, evening, and after exposure to noxious stimuli.  I can’t even cry right!  Then things got incredibly darker.  In defense of my sanity I won’t go into details here so let’s just say that frightful images passed through my mind.  Then in my mind’s eye I could see the images on my arms.  Just then I noticed that Steve was stooping over the side of the bed beside me in the dark.  Holy crap!  His sudden appearance in the dark scared me further.  My body writhed with seizures, now lying on my right side with Steve behind me.  My arms flailed in the air, my legs flapped together then apart, and the screeching sound of my hoarse voice screaming holy terror would exceed any scene I’ve viewed from a psycho thriller for sure.  But this was not a movie.  This was ME!

A few decades ago some really bad things happened to me when I was a kid.  I spent about 12 years as a young adult in many kinds of therapy, therapy groups, 12-step recovery groups (Al Anon Adult Children of Alcoholics), faith-based and 12-step weekend retreats, and reading tons of self-help books.  True healing came when I got saved and the person of Jesus Christ showed me his love, care for me, and plan for my life if I would follow His lead.  He was restoring the years the locusts had eaten (Joel 2:25) when I met my intended beloved and married Steve.  I felt happy and free at last.  Four years later I got very sick with viral hepatitis, Lyme disease, and Chronic Inflammatory Response Syndrome (related to mold).  I haven’t been able to work in two years largely due to the seizure attack episodes multiple times per day.  They are heartbreaking for both of us in addition to many other folks who have witnessed them too.

Over and over again I have searched for meaning, a purpose for this extended illness.  The incredible expenses of remediating our home for mold in early 2013 surely tested our marriage for sure.  We were living in a hotel while navigating a myriad of details and tough decisions as Steve travelled between work, home, and the hotel; his daughter chose to continue living in the house and help us out during the entire process.  Eventually our dog joined us in the hotel.  Eventually we completed the remediation, opted not to sell our house, and moved back home.  However, the seizure attacks never stopped!  By summer of 2013 they increased to up to 4 hours per day!  No medical professional or online research has found an answer yet.  Somehow Steve and I grew closer through it all as our hearts were breaking; the pain and suffering has been great.

Recently the Lord did show me a few tasks that needed to be completed in our marriage.  The love between Steve and I over these past 2 1/2 years has become strengthened, deepened because of this difficult journey.  We have now turned our residence into a “safe home” which restricts visitors or the conditions under which others may enter our home.  This helps prevent exposures for me that could cause a negative reaction (aka seizures!).  I love that my beloved is helping to protect me in this way so that I can get well.  I love that he has been faithful to the Lord and to me through this entire journey.  Others are watching us and I understand that we are doing some things right!  My own restoration and healing from the past may have provided a foundation for the important growth in me that has happened of late.  I am grateful to be able to recognize the good that is here along with the challenges.  There is always good along with the challenges if we look closely enough . . .

Back to the scene in the bedroom.  I asked Steve to move from where he was stooped behind me to the other side of the bed where he would be in front of me.  The uncontrollable hell that was ravaging my weakened frame was frightening enough not to have a sense that someone, even someone I dearly loved, was lingering over me from behind.  Steve knows all too well that if he touches me during an episode it can magnify the symptoms significantly.  I just couldn’t risk a casual brush of a hand; my distress was already unbearable.  Then the breakthrough began to happen.  Speaking up despite the hoarseness of my voice rose up some inner strength I had never sensed before.  I had to ride out the frightening images and thrashing about, my estimation of what weeping and gnashing of teeth might be like in a Biblical description of hell.  Tears came.  Silence followed.  I was able to ask for what I really needed when scared.

Soon my gracious and godly husband was gently sitting beside me.  I’m not sure if he was more horrified or moved to compassion!  We processed the scene.  His eyes held mind for a long time in the darkness before I was able to reach out and touch his arm.  Soon he was able to reach out with comforting touch for me as well.  Somehow we knew that my intolerance to intimate touch for the past 6 weeks was finally broken.  I was able to lie in the arms of my beloved once again.

My writing this story includes a great deal of literary and intellectual license.  I mean that I think I might know what is going on, the purpose and meaning in some of this suffering, but there is only one person who actually knows the truth:  my Heavenly Father.  I am glad that I found my voice in the darkness this evening.  I am glad that I survived a wretched scene without too much damage or lingering baggage.  I am grateful to have reconnected with Steve and that he could look beyond the ugliness to the beauty imbedded in this crazy journey together.  I trust that the Lord will go before us in the next scene and lead us in His way everlasting for His purpose and glory.  Lord willing it won’t be so bad next time.

Thank you, Jesus, for your redeeming grace.  You make all the difference in the world for me, tonight and always.  Thank you for your enduring mercy, giving me have the strength to do that to which you have called me (Philippians 4:13).  Be my voice in the darkness and in the light.  In Jesus’ name.  Amen.

 

The How Long Song

11 With this in mind, we constantly pray for you, that our God may make you worthy of his calling, and that by his power he may bring to fruition your every desire for goodness and your every deed prompted by faith. 12 We pray this so that the name of our Lord Jesus may be glorified in you, and you in him, according to the grace of our God and the Lord Jesus Christ.  2Thessalonians

You just never know who might be praying for you at this very moment.  If you have let your needs be known to anyone who is faithful to pray on occasion, it is very likely that at some point in time you are being lifted up before the God of the universe for His gracious care.  We might never know when that moment occurred or what was said.  We might feel a lightness in our human spirit or we just many never feel much of anything except our suffering.  But we can know this for certain:  that the God of the universe, the one Who made you and me, was listening at that moment.  His heart moved with compassion as your name came before His throne of grace that day.  And His thoughts towards you then and now outnumber the grains of sand on the earth (Psalm 139:18).  He loves you and me so much more than we can ever, ever imagine . . .

Our Heavenly Father has His hand on us.  His hand both reaches out to us and carries us through the mire in our lives.  We know that all things work together for good for His own, even the suffering.  Sometimes we get to see this in our lifetimes and sometimes we do not.  Our awareness doesn’t change the truth of the matter.  He is in charge and will use our suffering for His glory:  a greater purpose than our own lives (Romans 8:28).  Wow.  We may be relieved, blessed, redeemed, or justified too as he pours out His goodness.  We must hang in there for we cannot know what the next moment or next day may bring.  Even when the troubles continue on and on, in the words of Job to the Lord,

“I know that you can do all things;
    no purpose of yours can be thwarted.
You asked, ‘Who is this that obscures my plans without knowledge?’
    Surely I spoke of things I did not understand,
    things too wonderful for me to know.

“You said, ‘Listen now, and I will speak;
    I will question you,
    and you shall answer me.’
My ears had heard of you
    but now my eyes have seen you.
Therefore I despise myself
    and repent in dust and ashes.”

This is such an incredible witness of humility coming from a man covered in oozing boils, having lost all of his earthly possessions and children as well.  I cannot imagine such suffering even on my worst days.  Despite the episodes of wretchedness that continue to plague most of my mornings, afternoons, and evenings  I will remain faithful to my call to love Jesus and trust in His plan for my life.  Otherwise this journey of mine could be deemed meaningless.  Suffering for nothing is the alternative.  Holy cow, that would never get me out of bed in the morning!  A searing post-seizure neck headache and global pain puts the creamy taste of even the best bulletproof coffee down the drain every time.  NO WAY!  Only the promises and reassurance of my Lord and Savior are enough at these times.

The only way for me to endure the stress of my life at the moment is to let Jesus take the wheel.  Sometimes I just sit and stare for many minutes at a time.  Sometimes I am not “productive” in a day until what others would call dinnertime.  And sometimes I get a few things done then go back to bed for a long time.  Graciously there are a few other times of late when I can get up earlier while it is still morning and remain out of bed for the rest of the day.  Hey, I might be getting better after all!  I used to go to bed between 3 and 5 in the morning!  That pattern is generally broken and for that I am grateful.  Like my Grandma used to say, I’m getting there, “slow but sure.”

The How Long Song must leave my vocabulary.  Like the Ann Lander’s article quoting Robert Hasting’s article called The Station, we will “get there” when it is time.  Life is about the journey dontcha know?  Further, we will “get there” when the Lord wills it.  My job is to endure well, the journey I am called to take, seeking His will and keeping an eye out for His fingerprints along the way.  Let me not miss any measure of His sweetness in the sound of a calling bird or the bloom of a wildflower in unexpected places.  He will never lead me astray (Hebrews 13:5) and never require more of me than I can handle (1 Cor 10:12) with His grace.  He is with me now and until the end of the ages (Matthew 28:20), the end of my life.  That is reassuring indeed.

I’ll close with an unexpected blessing that has come right in the thick of all things stressful over here.  Twenty minutes of bliss.  Cool beans, eh?

Julie and Kinsey cruising along in the tandem  outrigger canoe!

Julie and Kinsey cruising along in the tandem outrigger canoe!

Easter Then and Now

Psalm 130

A song of ascents.

Out of the depths I cry to you, Lord;
    Lord, hear my voice.
Let your ears be attentive
    to my cry for mercy.

If you, Lord, kept a record of sins,
    Lord, who could stand?
But with you there is forgiveness,
    so that we can, with reverence, serve you.

I wait for the Lord, my whole being waits,
    and in his word I put my hope.
I wait for the Lord
    more than watchmen wait for the morning,
    more than watchmen wait for the morning.

Israel, put your hope in the Lord,
    for with the Lord is unfailing love
    and with him is full redemption.
He himself will redeem Israel
    from all their sins.

Indeed He did redeem the nation of Israel as well as those of us adopted as sons, daughters into the nation of Israel.  When we stress about the sufferings of our days we can remember that the Lord is with us, redeems us, and will come again in glory for us all because of what happened one Easter morning long ago . . . .

These words encourage me during the most wretched of nights, which come every night.  These words encourage me as I witness the life that has drained out of my brother’s body since his stroke this past weekend.  These words encourage me as I ponder all of the loss and heartache during my half-century on this earth.  These words encourage me as I see His grace and mercy in the loving eyes, the comforting touch of my intended beloved who loves me so.  These Words are the Living God made real in my heart;  transcending this life and drawing me to my life everlasting with my Savior.  Because of Him I can see the blessings around me which hint at the life, the hope beyond.

No matter where you are or what life is handing you, Gentle Reader, be assured that His love extends to you too.  Easter Sunday is a celebration of the Lord’s perfect love.  He came from the utopia that is heaven to live as a pauper, suffer a tortuous death, and returned in glory when no one was expecting it.  We would not and can not do what He did for us.  And as we believe in the living sacrifice of the Lord Jesus Christ, we are redeemed.  Sorrow is replaced with joy from deep within our hearts.  All things are made new.  While my “outer man” is wasting away, my spirit is renewed day by day and will continue forevermore.

I look forward to the part of this journey beyond this life.  In the meantime it is my honor to say to you:  Happy Easter Gentle Reader.  With love, Just Julie