When darkness comes

The worst of the nights, the worst of the days

Seem to come more often of late

Leaving me exasperated:  a fine word indeed

When all one’s strength is gone.

Desperate cries to my Lord go out

Nothing comes back.  I am alone.

My beloved is here but can do nothing

He is helpless but to feed me something

In hopes I won’t choke, that it might help.

The wretched seizures are more pervasive now

I cannot think of a greater hell

When my head bangs so, my breath does not come

And my thoughts are stuck in stun mode.

Then my Doc cancels again

How is this even right when I am in need

So much is wrong in that office

Leaving me to fend for myself again.

Years have gone by

With nary a change

I guess if another day passes

I must still be alive.

Lift me up my Lord

Psalm-23 4

Lift me up my Lord, my King!

Don’t leave me here alone forgone

I am dying inside as one they have abandoned

Despite my attempts to serve, to obey, decaying inside all the while.

There is no reserve

To bring to life anymore

The light left me long ago when wretched darkness

Became the friend I never wanted and never invited to stay.

The desperation drips with tears

The emptiness has no where left for an infill

The days blur meaninglessly from one to the next

The prayers still go unanswered by the God who has always known best.

Grant me some goodness

Oh Lord of my heart, my King

I’m drowning here with no-nowhere left

To Google, to turn, to ask, to keep me going ’til the day You will speak.

Have I not done the things that are set

The ones I thought you showed me to do?

Yet the suffering ramps louder than my screams with each seize

Take me from this hell please oh Master of my heart.  Isn’t it my time?

waiting, wanting, scripture, Bible, patience, trust, suffering, His will

Humbly, I will wait.  JJ

When there are no words

“Look up.  Look waaaaaay up,” were the words of The Friendly Giant in 1986.  This American children’s television host invited the viewer into his miniature living room where he pulled out a chair just for you by the fireplace.  Then an image of his fake leather boots appeared 10x the scale of the scene on the television as he invited little Sissy or young Bobby to follow the camera up to the smiling eyes waiting to tell a story, waiting to introduce you to a host of characters.  Rusty the Rooster was a silly-looking puppet yet their banter held my attention all the same.  Even though by 1986 I was not a kiddo anymore!

We often look up to see the wonder beyond us:  gazing at the twinkling stars so visible in the crisp Fall air or maybe oooing and ahhhing at the bright ornaments adorning the department store Christmas trees already on display before Thanksgiving.  There is something magical about a beautiful sight just beyond our gaze, just above our smaller human frame.  When that object is but ordinary the wonder may be less yet the opportunity to reflect may be just as profound too.

The ceiling above my bed of sickness holds much thought these days.  On a Monday I might see a simple popcorn ceiling in the same building contractor’s white paint of every home built that very year.  A few days later it may be the seam tape of the electrical lines painted to match the composite panel lining the roof of an aluminum travel trailer.  Two months ago it was a bright blue shade sail floating softly up, gently down above my patio chair when the weather was still sunny and warm.  Such simple forms that served to give me pause from the mayhem of the hours that dragged on before . . .

shade sail patio summer 2015

Times like these are best spent dwelling in the presence of the Lord.  No words fill my mind in those kind of moments.  The tears are already spent; the energy almost completely drained away.  Such is the aftermath of uncontrollable seizure attacks that plague my weakened frame day after night after day for hours without end.  The pattern continues despite new anti-microbial treatments, tests, consultations, prayer, tears, strategies new and old.  New pains come and find a way to stay.  There is nothing left to say.  There is nothing left to do but to dwell, I guess.

Even love can be like this I suppose when it hurts so bad and you still can’t seem to shake the pain away.  All you do is focus on the form that you knew or still know that stands in front of you when only a blank slate emptied of your future together remains.  Turn to the left, turn to the right, stand up, sit down, and unlike the cheer song at the football games in 1986, there is no fight!  Fight!  FIGHT!  when love goes away for good.  Oh how I long for the familiarity of the pains I had known long ago.  It would be so much easier to handle than the emptiness of my heart this night.  Yup.  The joy is gone!  Gone!  GONE!

So what’s a middle-aged gal to do in the middle of the night and there is nothing to look up to anymore?  When I have written more words from every angle that my heart can imagine and no new inspiration comes to fill the page, gosh, what will I do?  Not much, really.  Just wait I guess.  Tomorrow is a new day and it will be here before you know it.  Maybe something good will happen, eh?

In the meantime, won’t you hang in there with me?  Here, I have pulled up a chair for you too Gentle Reader.  The Friendly Giant is now known as Immanuel and has a special story to help us end this little time together.  It’s a great read for a bedtime story at any time of the day, I promise.

I do hope you enjoy it.  JJ

Psalm 121

Time for a change

From Family Practice Physician to Lyme Literate Medical Doctor, from Chiropractor to Obgyn, our medical doctor tries to do it all.  I have benefitted from his expertise yet I am still not well.  And when I saw the redness and exhaustion in his eyes during my appointment this evening I realized that he is not well either!

Everyone who sees this gifted physician knows his crazy schedule, his dedication to help everyone in his care, and his history of nearly dying a couple of years ago with his own debilitating illness.  We used to hear how his office conversion to the government mandated computer system was responsible for incredible stress and delays in appointment times.  For example, it was not unusual to call the office in the morning about an appointment scheduled for 10:00 a.m. and not be called in for my appointment until 4:00 p.m. or later.  Forget the ones scheduled after 3:30 p.m. as they were usually rescheduled.  For awhile about one-third of my appointments were re-scheduled, delaying receiving test results or reviewing the status of a particular medical condition for months.  Frustrating indeed.

Yet when there was an acute issue, the Doc was right on it.  When something new popped up I was sent to the hospital in another section of the medical park for labs or scans, held in the waiting room for results, and sometimes seen back in the office much later that night.  To be seen well into the evening was not an unusual occurrence.  My record was an appointment that started at 2:30 a.m.!  He had one more patient after me and had just received notice that one of his pregnant patients was going into labor.  He must have never gone home that night or morning!  Dedication had become insanity.  We talked about it during that visit.  He agreed.  I understand that some scheduling and office procedure changes were put in place for this new year.  As near as I can tell, the staff and Doc are ending their nights before midnight now.  Virtually the same story, different day.

I recently blogged about some important abnormal test results being misplaced for six months.  That has happened another time as well.  Tonight there was only enough time to go over about half of a detailed genetic cholesterol study.  He handed it to me and said, “here, you take this.”  Whaaat?  He thought the “high CBD hemp oil” that I reported was reducing the seizure attacks 40% was vitamins C, B, and D.  Er, no!  After correcting the computer’s voice recognition software two dozen times, I believe he understood what I was saying:  sitting there with my ventilation mask on to avoid seizure attacks from some mysterious exposure in the office.

Mysterious was the exposure until I asked one of the nurses about it.  I had asked before and a different nurse declined comment.  And yet tonight in her own fatigue, a long-time employee openly shared how their office has routine leaks in the ceiling throughout the summer.  The staff has complained about the musty smell and requested testing for mold spores.  Evidently the tests came back “negative.”  The nurses still battle sickness at work.  A friend of mine who is a patient there can detect the musty smell but I cannot.  I just get tic attacks sitting in the treatment room for 2 hours waiting for the Doc!  My worst episode lasted 2 1/2 hours NON-STOP began after midnight dominated by convulsions most of the time!  My husband came to pick me up around 4:00 a.m.!  I’m sure that exhaustion and stress were a factor being in the office so late that night but hey, I was sitting in a water damaged building to be seen by my doctor for mold illness!  Whaaaat?  Soon after that I started wearing a mask every visit!

I have learned so much from my brilliant Doctor.  He is a Christian man who really cares about his patients.  He has provided better care for me for six years here in this smaller Indiana town than I ever received in the large metropolitan area of Chicago.  When my health got significantly worse 2 1/2 years ago I hung in there with him, hopeful that we would find answers.  I was also unsuccessful finding another MD or clinic to address the intractable seizures, pain, etc.  Gratefully, the Lord has now led me to another clinic in Michigan with two physicians specializing in methylation issues and biotoxin (mold) illness, respectively.  After three phone consultations, extensive paperwork, and additional lab testing completed, my husband and I are preparing for my first in-person visit on March 24th.  We will stop at a lab near the clinic for additional blood work to better match Dr. Richie Shoemaker’s protocols for “Chronic Inflammatory Response Syndrome.”  My current MD and I have worked closely on Dr. Shoemaker’s protocol yet neither of us are officially trained; this led to using the wrong laboratories, incomplete test results when the samples were not processed correctly, and improper sequencing of the treatment plan.  Two very expensive medications from an out-of-state compounding pharmacy either did not work or made me much worse.  We tried!  The biotoxin illness Doc at the new clinic works closely with Dr. Shoemaker and is a Christian too.  I am encouraged.  Lyme disease is not the focus at the moment and that’s o.k.

So it’s time for a change.  I still have appointments on the books with my primary care physician as someone will need to monitor ongoing health issues not covered by the new clinic.  He has asked for copies of all of the testing and reports so I am happy to oblige.  With the Lord’s help I will continue tweaking the dose of high CBD hemp oil in hopes of reducing even further the seizure attacks and noxious symptoms that follow.  The Lord is guiding me step-by-step, including through the spiritual leadership of my beloved Steve.  I am so glad I heeded hubby’s advice and did not start seeing every expert who sounded good on the internet!  When moments are better for me, we celebrate and don’t think about the bad times.  We both see examples of how the Lord has used this season in our lives for His glory.  We are closer than ever, more in love than ever before and for that I am grateful.  I am closer to Christ than ever before as well knowing that He heard my truly desperate cries for help the night before I first started the CBD oil.  I was ready to die and it was not to be.  I was spared from further anguish and suffering, turning a corner to better things at last.

If you are suffering this day, this night:  do not give up!  There’s a blogger praying for you Gentle Reader.  More importantly the God Who created the universe knows your name, sees you, knows your pain, and gave his life so that one day your heartache would end.  Please draw near to Him and He will draw near to you.  He will never leave you or forsake you.  Everything will be worked together for good someday if you but call upon the Lord and let Him into your heart.  These statements are based upon His Word and promises that are true today and always.  The Great Physician will see you through, always my dear one.  Take care,  JJ

Psalm 71

Psalm 71

In you, Lord, I have taken refuge;     let me never be put to shame. In your righteousness, rescue me and deliver me;     turn your ear to me and save me. Be my rock of refuge,     to which I can always go; give the command to save me,     for you are my rock and my fortress. Deliver me, my God, from the hand of the wicked,     from the grasp of those who are evil and cruel.

For you have been my hope, Sovereign Lord,     my confidence since my youth. From birth I have relied on you;     you brought me forth from my mother’s womb.     I will ever praise you. I have become a sign to many;     you are my strong refuge. My mouth is filled with your praise,     declaring your splendor all day long.

Do not cast me away when I am old;     do not forsake me when my strength is gone. 10 For my enemies speak against me;     those who wait to kill me conspire together. 11 They say, “God has forsaken him;     pursue him and seize him,     for no one will rescue him.” 12 Do not be far from me, my God;     come quickly, God, to help me. 13 May my accusers perish in shame;     may those who want to harm me     be covered with scorn and disgrace.

14 As for me, I will always have hope;     I will praise you more and more.

15 My mouth will tell of your righteous deeds,     of your saving acts all day long—     though I know not how to relate them all. 16 I will come and proclaim your mighty acts, Sovereign Lord;     I will proclaim your righteous deeds, yours alone. 17 Since my youth, God, you have taught me,     and to this day I declare your marvelous deeds. 18 Even when I am old and gray,     do not forsake me, my God, till I declare your power to the next generation,     your mighty acts to all who are to come.

19 Your righteousness, God, reaches to the heavens,     you who have done great things.     Who is like you, God? 20 Though you have made me see troubles,     many and bitter,     you will restore my life again; from the depths of the earth     you will again bring me up. 21 You will increase my honor     and comfort me once more.

22 I will praise you with the harp     for your faithfulness, my God; I will sing praise to you with the lyre,     Holy One of Israel. 23 My lips will shout for joy     when I sing praise to you—     I whom you have delivered. 24 My tongue will tell of your righteous acts     all day long, for those who wanted to harm me     have been put to shame and confusion.

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Tonight as my body thrashed about I cried out to the Lord, asking “don’t you see me?”

Tonight I cried out for the Lord to take me, as in take me home.  He did not answer.

Tonight I cried out asking Him not to leave me here this way.  He did not answer.

The after burn of the seizure attacks, flu-spikes, chest compression symptoms making breathing labored, increased pain, and massive neck headache was unbearable once again this evening.  Things are getting worse.  This was my third episode today with over two dozen individual incidences!

My precious husband got out of bed after 1:00 a.m. to get me something to eat in an effort to end the tic attacks that would not stop after the seizures. 

It is now over an hour later and I am stable.  I am beat up.  I am still here!

 I will remind myself to have hope, to cultivate hope that comes through faith in Jesus Christ.  Sometimes He speaks and sometimes He is silent.  And for those who believe in Him, He is always present.

Psalm 71 puts it all together for me right now, so this is how I will pray as I go forth from this night.  And that’s about how far I have gotten.  My tummy hurts.  Time to go back to bed.  I think I can sleep now.