Just another day

Today was much of the same:

Back to bed after hitting the wall, so to speak.

Hours later I cleared

And a phone call to my beloved at work

Got me in motion to do the tasks at hand.

The story doesn’t vary much . . .

Maybe an outing to test the waters may come

Only to push me back a few days and then

I wonder if I have really come forward much at all.

But “it takes what it takes” sometimes;

The good, the bad, the ugly like an old western:

I know the patterns at least so I cry less

Resting comes more easily as does opting out

‘Cause life is more about the meaning than the doing anyhow.

The last sentence in this prose

Must point beyond my tale of woe

For when a beloved friend faced losing a family member so dear,

I realized the blessings that abound in my life even so

Even so I will go on and things will get better of this I am sure.

It doesn’t have to be today you know!

Lost in Space

I’ve been up late several nights in a row now, updating my eBook whilst blogging on home safety for my new company:  Two Step Solutions LLC.  While that may appear wildly productive the timing is just too odd for it to actually be that way for me.  I am discovering a few unusual things as I examine this new work, this current blog that you are reading, and the tragedy of illness resistant to treatment.

First, my professional writing lacks clear focus.  I add too many words and the flow is not there.  Oh the subject matter gets covered yet it is not yet up to par.  The short articles I am putting out there are intended to build credibility in my profession and an audience for the time when I want to launch my home safety product.  Perhaps I need a check-n-balance system before publishing each piece?  Yes, something like that.

I am so very dry with ideas to write about that aren’t a re-hash of the saga, the illness.  Sure, I have tried to end each blog with something reflective, insightful, Biblical, creative, humorous or otherwise useful.  It is simply getting harder to do so when the head-banging that accompanies convulsive episodes goes on FOR HOURS EVERY DAY!  You have heard about all of the test results pending.  I continuously try new treatments that make sense to me.  The outcomes continue to be disastrous.  Sure there is hope on the horizon.  But for now it is AWOL!

And if a test showed a particular course of treatment that worked, one could be encouraged as he or she ingested/applied/bathed/drank/swallowed it.  As for me, hundreds of remedies, diets, treatments, scans, procedures, therapies, adjustments later . . . I am discouraged.  Tens of thousands of dollars later . . . I am discouraged.  Moving about while beat up on 3 hours of sleep is virtually impossible yet I was called to do it today anyways.  My will has tanked.  Yes, I am broken and discouraged.

Lost in space.  There is no real sense of time here.  It comes and it goes with little of meaning to measure it by.  The foam in our bed is permanently dented in both places from my dwelling there.  Steve and I pray.  I cry a lot.  I hear that others pray out there somewhere and yet do not contact me anymore.  I am invisible for the most part.  And that’s just how it goes when you have dropped out of life for a few years.  Even blue jeans from Walmart start looking good when I can finally get out of the house on Wednesdays.  Eeeek!  I am an Eddie Bauer gal dontcha know?

I probably should not publish this.  Well stay tuned.  I am bound to bump into some kind of life eventually, eh?  JJ

laxative, medical humor, gallows humor, Lyme disease, chronic lyme, catamenial seizures, non-epileptic seizures, coping with illness, chronic illness Hope Beyone

Who will carry me?

It’s easy to bemoan the slide of morality in the United States recently escalated by the legalization of gay marriage.  What is natural to the human body has now been publicly adulterated by the unnatural.  The institution of marriage, which was created by God, has been changed by a few willful and unlawful men who did not even create the institution of marriage.  Alas another door has opened in our lives that will ultimately hurt everyone when his or her rainbow-colored eyes finally open to see it.  But most of us will never see the damage coming until it is too late . . .

When the truth, the pain of what we have done to ourselves is revealed, we will mourn.  Others will mourn the horror of what our complacency, our tolerance has produced.  Further, things will go horribly wrong even for those who believe that free living is right:  things that they could only imagine in a sex-slave murder mystery will come into their reality and hurt them too.  And those of us who have attempted to shine a light or sound an alarm on the moral decline will realize that what we have tried to do could never be enough to change unbridled evil.  Eventually, we all will grieve but for very different reasons.

So who will carry all of our tears?  Who will carry your grief and mine?  “Who” indeed.

boy and wheelbarrow, trees down, storm damage, carry, wheelbarrow, burdens, Lord carried me, Lord carried me, Footprints in the Sand
Chad Ryan | The Journal Gazette
Five-year old Braxton Davis joined the work crew 6.27.15 at Opechee Way and Nokomis Road, using his toy wheel barrow to remove leaves after a large tree fell in the front yard of his house at the Indian Village intersection.

The cute picture above denotes how we have trivialized the important issues of our day.  The picture above denotes how we have traded our core values and beliefs for a picture of life that feels good in the moment.  We have minimized the significance, the impact that our actions, our public statements, our private thoughts, the work of our hands can truly have in the larger picture of life.  These are not a small issues.  Eventually the magnitude and truth of who we are is always revealed.  Eventually a tiny wheel barrow carried by a child that is supposed to help us feel good about hundreds of thousands of dollars of storm damage will be crushed by the tsunami of horror headed our way.  Our world will never be the same for you and me beginning the events of June 26, 2015.

We cannot fix this.  No one individual, you or me, can carry us through to a better future. No one:  no President, no preacher, no crafty writer, no partner, no one can fix what is coming for us or carry our wheelbarrow of tears.  We are alone to face the consequences of these actions.  If we want the pain, the grief to stop then we will have to take our sorrow somewhere many of us have never gone before . . .  But where?

We understand the dilemma inside our own home too, in another way.  Last night was hell for me and Steve.  In the middle of 3 1/2 hours of  continuous convulsive episodes, I struggled to squeak out a request for him to carry me to the bathroom.  I was also in the middle of a 24-hour urine hormone test procedure so imagine my shame in trying to figure out what to do when my hands or legs were not working right.  Neurological collapse had settled in.  Gratefully as soon as he got me upright and helped me with a sip of water, I could use my hands well enough to position the urine cup myself when sitting on the toilet.  I was able to get the sample and dump it into the collection receptacle resting in the bottom of the tub next to the toilet.  Steve then helped me back to bed just in time for the next round of head-banging, wailing, tears, and terrible pain.  And so it went for the sixth night in a row.

I am grateful that when Steve is home, he is very capable of carrying me.  He has done so a hundred times.  He has held me through the ugliest of moments, fed me, clothed me, prayed, and artfully let his deft gallows humor fly at just the right moment in time when we both needed it!  Then there were the thousands of times when he was not there and I still needed help.  I needed to get to the bathroom but my legs would not move.  My throat was parched from cries of sheer angst, hyperventilation, sweats episodes, and chronic dehydration.  I wondered if my next breath would arrive or not.  My tummy growled for hours and I could do nothing to satisfy the hunger.  My brain became too numb to figure out what was in my ability to do or not anyways.  Oh the neck pain from the seizing!  Fearful thoughts, not my own, pushed into my mind by force of some electrical misfiring that goes with seizure activity.  And I cried deeply, feeling alone.

In those moments, Jesus Christ carries me (John 16:32).  I am not alone!  Jesus Christ carries and equips Steve over and over again for the tasks at hand in our marriage (1 Peter 4:10).  Jesus Christ will also carry those who do not know him whenever, wherever they finally reach out for help (Psalm 10:17).  Our God, Jesus Christ, is worthy of our reach since He created us out of love:  shown to all as He grieved bloody tears for our sorrow, our pain (John 11:35) that we endure in this life.  He existed before the time, space, and material that characterizes our lives (John 1:1-4) and is the very reason that we are here.  He loves us more than we can ever imagine and is always here for us, no matter what is going on around us (or within us!) (Matthew 28:20).

Further, we can never say that what freedoms we want, doubts we have about our lives, or the philosophy in our own minds will have anything to do with Who God is.  God, the triune Holy Spirit, Father, and Son (Jesus Christ), is separate from mankind and is not subject to the constraints of this earthly life.  Our ideas simply cannot match up. We will never fully understand Who He is with our finite minds so rejecting Him won’t get you anywhere worthwhile.  The answer to our questions, our unmet needs in life is belief.

Because we are finite, we must place our belief in that which is infinite:  true yesterday, today and tomorrow.  The only entity that is infinite is God.  He never changes.  He is perfect, all-knowing and we are not.  We can reach out to Him in with our tears, know that He cares (Psalm 139:17-18), know that He has our back (Jeremiah 29:11), and live on with hope for tomorrow amidst our trials, our heartache.  It follows then that our victory over the heartaches of this life is in Christ alone:  the Son of God.  Jesus Christ, manifest in His Word (the Bible), reflected in His creation, and felt through the longing inside our hearts, is not bound by our limited view of the world.  Jesus transcended this life when He died on the cross and rose from the dead.  Jesus Christ will “carry” each of us through the mysteries of life to a better place when we place our trust in Him (John 3:16).

Our Lord Jesus Christ made the difference for me and Steve last night and a hundred other horrible nights.  Jesus Christ will make the difference for you too in everything, Gentle Reader, whether you choose to believe in Him now or at another time.  But why wait?  Why not enjoy His transcendent peace, love, joy, hope, and more right now?

For the believer in Jesus Christ, it doesn’t really matter for our future, what is going on around us in the world right now.  We will live infinitely longer in heaven with God than the time it takes to complain about a Supreme Court decision.  Join me in doing what we can to love people, all people.  Reaffirm in our minds that we ultimately place our trust in only one place:  the Person of Jesus Christ.  He is the One Who matters most.  He is the One who will carry us from here into our blessed eternity with Him.  And that is a celebration worth waiting talking about!

But, dear friends, remember what the apostles of our Lord Jesus Christ foretold. 18 They said to you, “In the last times there will be scoffers who will follow their own ungodly desires.” 19 These are the people who divide you, who follow mere natural instincts and do not have the Spirit.

20 But you, dear friends, by building yourselves up in your most holy faith and praying in the Holy Spirit, 21 keep yourselves in God’s love as you wait for the mercy of our Lord Jesus Christ to bring you to eternal life.  (Jude 17-21)

The Lord is the one who carries me for sure.  What do you say we go together?

With love, JJ

The Night Watch

Psalm, Psalm 42:8, fear at night, comfort at night, God is with me, in the night, joy comes in the morning, getting through the night, blog at nightAnd so the night watch begins

As my beloved tucks himself part way under the covers, the cool air circulates around him and our home.

He looks so peaceful as he collapses into bed,

Having worked the day long and again this evening to make things right with our world.

The pup slumbers on the floor behind me

With her own watchful eye as the big storm rumbles outside in the darkness;

Another night begins and I am hungry

The wretched episode and weathering inside my own body now behind me once again.

It’s a strange life, that is clear:

The promise of new treatments,
my meager attempts to go on . . .

Let me pretend I am doing something worthwhile

When my world stops shaking and I find you here, Gentle Reader, ready to make sense of it all.

Sometimes there is no sense to be made

We simply endure, do our due diligence to survive:

Touching something meaningful when the opportunity comes our way

Then letting it all go to the escape of sleep whether by night or by the dawn cometh soon.

Perhaps this night will bring fruitfulness

Maybe I’ll be able to write something of worth?

There is certainly much to do alone here with you as the keys light up and my mind slowly turns on;

My Lord is here with me so something good, something meaningful might happen yet this evening!

Since I cannot be sure but the time will pass anyways,

I better get something to eat before “dinner” slides into breakfast, hunger into weakness

Then maybe my brain will come back online too.  If this is to be my shift I better get to my assigned duties of late —

If I am to be awake, the most of it I shall make again and again.  Who knows, maybe something good may be too?

Yes, something good may be too.  JJ

I was made for you

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