Bumbling Along

The days are meaningless yet pass anyways

Wanton for a focus, a point, a reason why

So I wander through the rooms, this one and that

Waiting for my moment to arrive:  today or the next?

Ever seeking for answers over here, over there

That email tells me, “watch this!” for new keys

I don’t think anyone really knows how to help me

Sans my Heavenly Father who ordained this journey.

I trust my Lord who sustains me no matter

The segways that come again, again, again

Each one a little different so mindful I must be

Lest I miss the point of this seemingly wretched tragedy.

Pray tell the suffering goes on and on for years

Yet somehow I am not the same for having hung on

My needs provided for with a few wants in there too

Just gotta find some things to hold onto while I dwell in limbo.

For wherever we are going, my Lord Jesus and me

Will be worth it when I am with him always with no more weeping,

Maybe a blessing will come for being faithful or who really knows?

Only in His strength will goodness come as I bumble along til one day I am finally free.


Until then, hang in there Gentle Reader.  And do take care, k?  JJ

God is bigger than that

He isn’t Santa Claus with an inside list to our good deeds or wishes.

For God is bigger than that.

He isn’t a papa or father time who knows, who endures, and who roots with us for the team on Saturday night.

No, Father God is bigger than that.

He never forgets a heart’s desire, fallen sparrow, unfair turn of events, hurt from a friend, or love who walked away.

Yup.  The Lover of our soul is bigger than that.

He always wins, cheers from the ringside seat in the game of our lives, takes the high road to lead us there, and reaches out to lend a hand.

Of course.  An infinite God is bigger and even closer than all that.

He heals the broken hearted, feeds the weary wanderer, takes care of the suffering we cannot see in due time:

For our God-Man Jesus’ love is bigger than these too.

His provision exceeds that which we deserve or can even ask

When our yardstick extends to eternity which is bigger than our minds were meant to fathom on earth.

So why do we fret when the trials come as they always do?

Because we have forgotten and need gentle reminders along the way that our

God is bigger than that.  Oh yes He is.  Alpha and Omega.  The beginning and the end.  Always was and always will be.

In this we can forever rest.  I am so very glad.  JJ

animals looking to the stars



It’s only a matter of time

hellLet’s see.  If I had a timer going for a few events these past few days, this is how I would measure up:

  • Friday:  Made dinner.  1 1/2 hours.
  • Saturday:  Unloaded compost with hubby and tinkered with a few garden tasks.  Made dinner.  3 hours.
  • Sunday:  Sat outside.  Posted some new jewelry on Etsy and surfed the net.  All day.

The rest of the time was characterized by self care, supreme sickness and recovery.  Who knew that seizure attack episodes on Friday and Saturday could take on a violent, writhing character for 10 minutes straight of unbelievable hell?  I am so very glad that the other episode of 2 hours of non-stop seizing plus aftermath would not take me to the emergency room in the middle of the night, early Saturday morning.  Alas, my beloved got a few hours of sleep.  But today it’s just sad that I missed my husband’s shooting class.  All of this is a really big bite in the shorts, I tell ya.

As it turns out the most difficult issue for me to face during these last almost 3 years of illness is a “waste of time.”  I value the meaningful use of my time more than money, people, places, and things.  It’s just how I am wired and I don’t want to spend a 60-minute counseling session trying to figure out WHY!  This aspect of illness really cuts to the core of my being.  I will, however, submit my will to the wisdom of my Heavenly Father.  Perhaps it is a supreme opportunity to soften this issue of time measuring value for me.  Value is not measured by time in the eyes of the Lord.  Value is measured by simply being.  (Now that’s another topic for another time!)  Maybe today I should explore the topic of time in a walk through His Word?

God created time.  Genesis 1:14  14 And God said, “Let there be lights in the vault of the sky to separate the day from the night, and let them serve as signs to mark sacred times, and days and years,

Time will end, thereby increasing its value.  Revelation 10:6  King James Version (KJV) And sware by him that liveth for ever and ever, who created heaven, and the things that therein are, and the earth, and the things that therein are, and the sea, and the things which are therein, that there should be time no longer:

There is a time for everything, good and bad.  Ecclesiastes 3:1  There is a time for everything, and a season for every activity under the heavens:

Time is measured by God.  All things happen in His appointed time.  We are to wait patiently for His divine timing of both the events of our lives and the events prophesized in the Bible.  Daniel 12And I heard the man clothed in linen, which was upon the waters of the river, when he held up his right hand and his left hand unto heaven, and sware by him that liveth for ever that it shall be for a time, times, and an half; and when he shall have accomplished to scatter the power of the holy people, all these things shall be finished.And I heard, but I understood not: then said I, O my Lord, what shall be the end of these things?

And he said, Go thy way, Daniel: for the words are closed up and sealed till the time of the end.

10 Many shall be purified, and made white, and tried; but the wicked shall do wickedly: and none of the wicked shall understand; but the wise shall understand.

11 And from the time that the daily sacrifice shall be taken away, and the abomination that maketh desolate set up, there shall be a thousand two hundred and ninety days.

12 Blessed is he that waiteth, and cometh to the thousand three hundred and five and thirty days.

13 But go thou thy way till the end be: for thou shalt rest, and stand in thy lot at the end of the days.

We have no idea when things will really happen or not happen.  Better to keep our eyes fixed on the Lord our God.  The most important event is His return in glory.  Mark 1332 “But about that day or hour no one knows, not even the angels in heaven, nor the Son, but only the Father. 33 Be on guard! Be alert! You do not know when that time will come. 34 It’s like a man going away: He leaves his house and puts his servants in charge, each with their assigned task, and tells the one at the door to keep watch.35 “Therefore keep watch because you do not know when the owner of the house will come back—whether in the evening, or at midnight, or when the rooster crows, or at dawn. 36 If he comes suddenly, do not let him find you sleeping. 37 What I say to you, I say to everyone: ‘Watch!’”

God ordains certain tasks in the lives of believers at certain times until our days are over.  When in doubt we are to fast and pray that the Holy Spirit may counsel us, lead us, comfort us through our days.  Esther Chapter 4.  14 For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father’s family will perish. And who knows but that you have come to your royal position for such a time as this?”15 Then Esther sent this reply to Mordecai: 16 “Go, gather together all the Jews who are in Susa, and fast for me. Do not eat or drink for three days, night or day. I and my attendants will fast as you do. When this is done, I will go to the king, even though it is against the law. And if I perish, I perish.”

Our time is to be spent gaining wisdom among other tasks He ordains for us to do.  Psalm 90:12  12 Teach us to number our days, that we may gain a heart of wisdom

We are to spend our time in meditation on the things that matter most.  This requires  inactivity!  Philippians 4:8  Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

Time spent with the Lord is infinitely multiplied as He is timeless.  2 Peter 3:8  But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day.

God orders the steps, the events of our lives for His divine purposes.  They are not random.  They are not without meaning or purpose.  Proverbs 16  In their hearts humans plan their course, but the Lord establishes their steps. 

His plans include blessing, a future and a hope.  In this promise we can find rest.  Jeremiah 29.  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.

And yet we are to live fully in the moment and consider the future according to His will.  James 4  13 Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” 14 Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15 Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

Not only are the events and timing of our lives planned as part of His will.  They are ordained for His glory!  Ephesians 1.  11 In him we were also chosen, having been predestined according to the plan of him who works out everything in conformity with the purpose of his will, 12 in order that we, who were the first to put our hope in Christ, might be for the praise of his glory.

 O.k.  I think I’m getting a better perspective on things!  Not only does my Lord and Savior care for all of the details of my life (Psalm 139), He carefully constructs the timing of everything as well.  When I am up late at night writing this blog I remind myself that it is an honor when someone reads what I have written.  You, Gentle Reader, have chosen to spend some of your valuable time with me.  And if I have succeeded at any level to bring each of us closer to the throne of grace, the love of Jesus Christ, well that is time well spent indeed for both of us.  To Him be the glory.  May He mark our time for His purposes.  After all, it’s only a matter of time.  There is so very much more . . .  JJ


Father Save Me From This Hour

Such was the cry of our Lord and Savior, Jesus Christ as He prepared to die a tortuous death on the cross at Calvary:  before His glorious resurrection and what we have come to celebrate as Easter.

The sins of the world hung in the balance that day, separating us from the love of the Father in heaven.  Until the time of Christ a Jew was required to bring sacrifices to atone for his or her sins and that of the family.  Bringing sacrifices, keeping the Sabbath, and a plethora of Jewish holidays dominated religious life.  These rituals and following the rule of law (including the Ten Commandments) was the only way to get to heaven before the death and resurrection of Jesus Christ.  Then God’s Word teaches us that He came to save the world if we but repented and believed in His saving grace, His death and resurrection.  He became the Passover lamb that was slain.  Gifts of eternal life, indwelling of the Holy Spirit, spiritual gifts, fellowship with other believers and more follows for those who come forward.  But it’s not all rosy living the Christian walk  . . .

Yes, there is much good in the world, much happiness in this life.  And then there is the bad stuff too.  The reason for the bad stuff is an important topic yet it goes in another direction than my discussion today.  Let’s just say that evil is here and it will always be here until Jesus Christ comes again.  When bad stuff happens, someone suffers.  Our Lord knew what suffering felt like as He was ridiculed, whipped within inches of His life, and sentenced to a horrific death for something he did not do.  He came into the world willingly from the eternal realm out of love for us.  Conversely, we rarely come to our suffering in the world willingly.  Our suffering comes as a consequence of living in a fallen, imperfect world as sinners.  Further, our suffering isn’t always fair.  Sometimes it comes when we are close to God, working hard, doing good, loving others, and making the most out of our finite lives.  Many times it just doesn’t make sense.

I just finished listening to a gentle message by the late Chuck Smith of Calvary Chapel Costa Mesa entitled, “Prayer of a Troubled Heart.”  Pastor Smith developed this topic better than I can so I would encourage you to listen to the audio sermon if the subject is on your mind these days.  I was comforted by his instruction that our suffering can be God working out eternal purposes in our earthly lives for our eternal glory.  If we could somehow change God’s plan for our lives we would be obstructing God’s eternal purposes.  “Even from the pain and suffering, eternal good is going to come.”  We can point to the life of the apostle Paul who endured physical infirmity and still carried or “deposited” the Gospel message to countless peoples throughout the known world of his time.

12 That is why I am suffering as I am. Yet this is no cause for shame, because I know whom I have believed, and am convinced that he is able to guard what I have entrusted to him until that day.

13 What you heard from me, keep as the pattern of sound teaching, with faith and love in Christ Jesus. 14 Guard the good deposit that was entrusted to you—guard it with the help of the Holy Spirit who lives in us. 2 Timothy 1

The apostle Paul encourages us to trust, to have faith in the Gospel of Jesus Christ no matter what our “light and momentary” affliction might be.   In light of all eternity, our time of illness is short indeed.

16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.  2 Corinthians 4

Relying on the scriptures brings the power of God into our weary hearts and minds.  We find stories of triumph over trials that encourage us.  Hebrews 11 describes several pillars of faith, empowered by God to endure, overcome, and bring glory to God as they saw His plan unfolding before their eyes.  Joseph was sold into slavery, imprisoned in a dungeon, mocked then ended up saving the nation of Israel from starvation as others recognized his Godly character and abilities.  There are many more men and women from whose example we can learn as well.

Drawing from the scriptures Pastor Smith guides us first to pray about the things troubling our souls.  Second, we are to “reason” that God really does love me and is wiser than I am.  I am not to base my understanding of His love for me on my circumstances but on who He is.  The events of my life work out His eternal purposes for both me and those around me according to His Divine plans for good, for His glory.  And third, I am to commit myself unto the will of the Father knowing that:

We know that in all things God works for the good of those who love him, who have been called according to his purpose.   Romans 8:28

This is difficult to do!  If it’s too difficult then I must first ask myself:  in whose strength am I trying to get through the suffering?  Do I keep asking the Lord to do this or that for me versus asking Him to help me?  Reveal His will for me?  Encourage me with His grace?  Strengthen me to endure?  Submit to His will knowing that His good is coming?  I must put on my eternal glasses even if I cannot see anything beyond my situation.  I need to ask Him to increase my faith and He will do it!

This insight came together after another and extremely wretched evening.  Only once before have I completely collapsed without warning at the kitchen table requiring my husband to catch me from falling.  Moments after he carried me to bed I cried the most guttural tears of my entire life.  The most violent convulsions I have ever experienced followed.  Steve prayed then cried too.  It seemed to me like I was “weeping and gnashing (my) teeth” as the Bible describes for those in hell.  It took a long time to recover.  I still do not know why all this suffering is here for me and Steve.  I do know how I am to handle it, however.  That insight came earlier in the evening.

Unfortunately I never was able to join the home group discussion in my own home tonight.  After welcoming our brothers and sisters in Christ and setting aside the goodies they brought for later, I attempted to walk to my seat in the living room.  I was aware that my speech had become strained already.  Then all of a sudden I felt sick:  the pre-tic set of symptoms ramped up quickly indicating that what was coming next would not be good.  I whispered into Steve’s ear from behind where he was sitting on the sectional that I wasn’t feeling well and scooted off to our bedroom.  As my head was hitting the pillow the seizure attacks began!  They were bad.  They persisted with vocalizations that risked alarming our guests down the hall.  Soon I heard a guitar playing and people singing.  The worship had begun and the sounds would cover my episode.  Thank you Lord.

I had hoped that the music would also quiet my tender frame in torment.  Not so.  The episode quieted into tic attacks and I was able to breathe more easily.  In my spirit I cried out to the Lord to stop the episode.  I feared many scenarios that could happen next in which others would end up horrified, witnessing some aspect of the seizures.  Our master bathroom toilet was out of commission for repairs requiring all of us to use the bathroom in the hallway between where I was in bed and the living room.  If I collapsed and was unable to walk, Steve would have to physically assist me to the bathroom partially in view of where everyone was sitting.  I would first need to scream to alert him beyond the closed Master bedroom door.  Nothing would be pleasant about the fact that I really needed to use the bathroom down the hall from me  . . .

It’s as if the Lord was sitting right next to me in that bed at that moment.  It’s as if I could see the slight scowl on His face as He “looked” me directly in the eye and wondered why I was telling Him what to do again.  Had He not been with me in prior episodes?  Had He not used this illness to reach thousands of people around the world with the Gospel through this blog?  Had He not gifted me to write and create in ways that brought joy to my heart even in the middle of the night?  Had He not provided for both Steve’s and my needs these past 2 1/2 years?  Helped me become an Advanced Master Gardener?  Strengthened Steve to win his first national kayaking award?  Yes, He had worked in both of our lives incredibly despite the extreme suffering.

No one in their right mind wants to suffer.  I don’t like this wretched illness and long for it to be over.  Yet if I miss the teaching moments that come along the way then this suffering will be no more than an endurance race with no prize, no glory, no hope, no real encouragement for others who will come after me.  The lesson I needed to learn this evening was to simply ask for the Lord’s HELP and let HIM do the rest.  He knows why this episode was timed during the heart of our home group meeting and I do not.  I need to trust Him on this one as I have during so many times of need in the past.  His answers, His timing, His purposes have encouraged me more times than I can describe here in addition to numerous other people watching the events unfold.  As Pastor Smith describes in his message:  I do not want to obstruct God’s eternal purposes that will be for my good and His glory!

I must persevere in faith no matter what the cost.  He will strengthen my faith.  I must ask my Heavenly Father in the name of Jesus Christ for help then wait on His leading, His answers.  Jesus Christ did this very act of submission before the Father when Jesus was praying in the Garden of Gethsemane knowing that His torture and death were imminent:

42 He went away a second time and prayed, “My Father, if it is not possible for this cup to be taken away unless I drink it, may your will be done.”  Matthew 26

The God of the universe, living among us as a man yet fully God, submitted to the will of the Father, the purpose for which He was born into the world.  He cried out for the Father to save him from that hour in crisis, for help.  Most importantly He then submitted to the will of the Father and the world changed forever because of it.  I will live a life eternally with my Jesus because He died on that cross for me.  My time of suffering is not too much to bear with His help to live the life to which I am called.  Sure it feels like hell.  My faith transcends my broken frame and will bring an eternal reward that goes beyond my temporary affliction.  With this I can go on.

What say you, Gentle Reader?  He loves you too you know . . .  Might you call on Him too?  It just might rock your world in a good way.  No kidding.


Best to Hang in There When “There” is Unknown Territory

With a brain fog or spaciness that defies definition, I humbly submit this blog update!

Tuesday began 2 doses of a promising new treatment for Chronic Inflammatory Response Syndrome:  vasoactive intestinal peptide or VIP.  The first dose was at noon and the second was at midnight.  I felt a little on edge as I went to bed within the hour of the second dose, followed by a few tic zips (such as the norm for me these days!).  What I didn’t expect next was the fearful images that passed before my eyes as I entered sleep mode.  No problem, really.  That’s what prayer is for and I called upon the Lord to sanctify my mind.  Prayer answered.  I was able to fall asleep without any more problems.

My next surprise came with an abrupt wake up at 4 in the morning with a vivid nightmare!  When I say vivid, I mean that the bats in my mind were landing on me, in color and I could feel them!)  Frightful indeed!  Low grade tics quickly escalated into seizure attacks, air hunger, shortness of breath, and at least 20 minutes of rotating noxious symptoms.  Not sure which was worse:  the nightmare or the aftermath!

I have had nightmares and this type of experience before.  The last one was at least 2 weeks ago so the timing may or may not have been related to the new medication.  After all, the pharmacist said it was a “benign” drug and my LLMD said that 50 mcg is a low, loading dose.  Yeah right.  I am overly sensitive to everything right now so it is no surprise that a nasal spray of a new hormone, deposited directly into the capillaries in my sinuses and leading into my blood stream, could shake me up a bit.  Sigh.  No problem again.  This is familiar territory.

Wednesday I decided to take a break from the VIP when I awakened feeling pretty beaten up.  For my daily treatment I just ran some Rife programs, slept some more and had a pretty good day overall for me.  The post-attack headache subsided and I was able to take care of a personal appointment and run a few errands.  I forced myself to get out and work in the garden later and it was soothing therapy.  I praise the Lord for His gift of Spring renewal here in the Midwest.  I love living here.

I took the next dose of VIP on Thursday at noon.  My nose started running right away but this didn’t last very long, thankfully.  Then brain fog settled in followed by a ramping up of my nearly constant companion of a low grade headache.  Regardless, I got going on some insurance matters that have needed attention for over a month.  Guess I’m at the next tier of taking care of things since moving home March 27th;  I was glad to “getter done.”  The day was going fairly well so I got to go to church with my hubby for the National Day of Prayer Service at our calvary chapel.  How sweet it is to worship with my Stevers, to pray, and to fellowship with other believers.  It had also been about a month since the last time I was able to go to church.

The worship was awesome.  However, during the service the music was sooooo loud, and the bass was soooooo loud that both of us had to plug our ears even though we were sitting in the back of the sanctuary under the balcony!  Turns out that plugging my ears is not enough to avoid sensory overload.   I cannot tolerate the vibrational sound energy and bass wavelengths of loud music.  I do not understand why it has to be so loud anyways?  We are there to worship the Lord Jesus Christ, not hurt our ears!  Unfortunately, things did not go well after I returned to wait for Steve in the car. I had to get out of there before the spill-over into seizure attacks would begin.  The music was the trigger that turned this multi-sensory-sick child of the King into what would turn out to be a 12 1/2 hour episode of seizure attacks.  As rocker Alice Cooper once sang, “welcome to my nightmare” once again.

Gratefully I was able to get out of the car by myself when we got home and walk gingerly into the house.   Gratefully Steve was available to help lift me off the couch two hours later after eating and resting, so I could get ready for bed.  Gratefully I was able to attend to my own self care and even make us some food earlier during one of the breaks in the action.  Gratefully I have some new positioning strategies in bed to minimize the impact the uncontrollable shaking has on headaches and other painful areas.  Gratefully Steve prayed for me both before we fell asleep and in the morning before he left for work.  Gratefully I was able to make a snack when I woke up ravenously hungry at 4 in the morning!  Hmmmm.  There’s that “4” number again.

The attacks tapered down by the time I was to finally get out of bed at 9:30 a.m.  Just a quick jolt welcomed me to my day and I was able to take care of myself and our dog.  Once again I was pretty beat up by the events of the last evening.  Twelve and one-half hours had passed since the episode began and it was finally over.  The shell of the person that is Julie was leftover to slowly get going, make my special dietary items, and take care of the stuff of life before my afternoon physical therapy appointment.  Gratefully I was able to start then later finish and mail the jewelry order that was due today.  But in the middle of the day and during physical therapy, there was another rebound episode of neuromuscular events followed by copious tears.  I am so sad.  This is really hard.  I am really broken.  Gratefully my therapist is trained in some calming techniques of myofascial release that work really well with me.  Even at my low energy level with soreness all over my body, I am now able to function again.

So this is chronic illness and the ups and downs of recovery.  One day you are excited for a promising new treatment and the next you are herxing from a reaction to the promising new treatment.  The physical therapist says that the seizure attacks seem “softer” than the ones I have had in the past.  O.k., I guess that’s good.  Maybe it is just part of the process of assimilating a new drug that crosses the blood-brain barrier and into a zone where illness has a foothold at the moment.  Sure is a tough road, I’ll tell ya.  Recovery is not for wimps.

At this point is usually where I write about my faith in the Lord Jesus Christ, sustaining me and giving me hope in the face of severe testing and trials.  If you’ve read this blog before, you probably know what I am about to write here.  You might expect me to say what a difference it makes to have Jesus in my heart or I would be filled with despair.  I usually say a lot about His sustaining grace as I truly believe that my life and these experiences are for my ultimate good and His glory.  Yes, I am softer in many ways than before this illness began.  This suffering will end someday.  I know where I will be when it ends.  Do you?  Do you know where the trials of your journey through life will lead you when your life ends?  If you do, does  your life show it?  Oh I hope so!

If you have not turned to the Lord as your Saviour, lover of your soul, forgiver of your sins (and you all have them, sorry folks, no one is perfect), and hope for all of eternity, then  what the heck are you waiting for?  How many blogs do I have to write about suffering before someone out there that isn’t saved gets it:  the meaning of life is not all about YOU, it is not all about ME.  It is all about HIM.  It ain’t about a religion either.  It is about a relationship with the God of the Bible.  Until we are given an eternal perspective that He provides and transcending joy that He grants beyond measure when we but believe in Him, all we have is our fallen human condition.  Now that is sad indeed!  Our problems will never all be solved in this life.  We will hurt.  We will lose things and people and places that we love.  Our experiences will be a mixed bag at best.  We will fall short of the peace we seek when we realize that in the end, the stuff of this life adds up to dust, to nothing at all.  We can’t take anything with us when we die.  As the wisest, richest king that ever lived (King Solomon) once said, it is all meaningless!

Yes, it is best to hang in there when there is unknown territory.  I am taking Jesus Christ with me.  My eternity began when I accepted Him into my heart as Lord.  Oh gentle reader, will you too?

P.S.  Going for a walk with my pup, a friend and her pup.  God is so good.