Weary from the road

Christmas chocolate.small

“They say no pain no gain

I say roses are worth the rain!”

Or so the song went that I wrote back then

When “recovery” seemed like something I could attain.

Decades later I realized the wisdom of Robert Hasting’s Station

A place where you reach your goal, Nirvana, the prize, all you’ve been awaitin.’

Too bad life is often not like that:  the good, the bad, the ugly all take their turn

You never really know what you are going to get when your head lifts from the pillow at dawn.

And so goes my new treatment when things have gotten worse before getting better,

How is this even possible when it appeared the Lord orchestrated these steps to the letter.

Now faith means holding on to that which is unseen for the promise of my Lord’s Day

When the suffering will end, be redeemed for glory whether it comes soon or some other way.

I borrowed my beloved’s belief tonight when mine was just too shaken to go on any more–

With love in his eyes, his heart he prayed for healing and more once again like so many times before.

We know our Lord hears us and that we have His will, His heart within our own

I just pray I can hang on this weary road that seems to have gone on just too long.

[Please send chocolate . . . pure unsweetened cocoa butter works best right now.  JJ]

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My hope this night is the promise of my Lord and Savior that, “He will wipe every tear from (our) eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”  Revelation 21:4  Somehow, someway, I am going to make it, Gentle Reader!

Torture, water-boarding, and more: Part 1

balance-testing

These 3-part posts are not for the faint of heart.

I wish that I was not writing them.

This was my reality just 24 hours ago and it bears recording for future reference.

A true miracle usually starts with a hell-of-a-story.  So here it is, Part 1:

Many of you gracious, Gentle Readers know that I have been battling a serious illness for just over 4 years.  What began as an acute, viral hepatitis became the introduction of an ongoing drama that has now included (alleged) Chronic Lyme disease, mercury toxicity, poisoning from root-canaled teeth, Stage 2 Candida infection and Chronic Inflammatory Response Syndrome (CIRS) including a biotoxin illness.  The most wretched of the myriad of symptoms continues to be daily convulsive episodes.  And for the last 2 1/2 of these 4 years those episodes range from 2 to 10 hours per day rendering me useless for a bigger chunk of daily living.  (See this video for a sample.)  Currently there is no end in sight.

My toe clips failed and I fell off my bike on August 23rd of this past year causing a Closed Head Injury with Concussion.  While my baseline functioning was only mildly affected, the orthopedic and neurologic impacts were measurable.  I hit my left shoulder, elbow, wrist, knee and side of my head on the pavement.  Within the next few weeks I received chiropractic and physical therapies then was referred to “The Balance Center” to assess ongoing dizziness, lightheadedness, ringing in my ears, etc.  I pleaded with my Doctor to delay the 3 1/2 hour test procedures due to the severity of the convulsive episodes and the fact that the acute symptoms had already diminished.  He agreed and we delayed it one month to allow some additional time to heal.

The Balance Center had to get special permission to schedule the appointment after I mentioned “seizures,” for fear that I would not be able to tolerate the test procedures.  Wise concerns.  My Doctor approved their request to proceed!  When the day got nearer I intervened and delayed it another month to October.  My Doctor understood my reasoning back then and pressed for me to complete the assessment as scheduled this past week.  He stated that there still could be some vestibular issues contributing to the convulsive episodes and lingering symptoms noted above although the latter had improved.

I knew I was doomed.  Having worked in occupational therapy for over 3 decades until disabled by this wretched illness, I knew about vestibular testing and rehabilitation.  I had attended a weekend training for it many years ago and referred my home health patients to this very clinic!  Now it was my turn.  I also knew that test devices with moving parts that cause you to lose your balance, spin you around, prompt you to move your eyes rapidly and the like would be hell for me.  I did not think I would be able to complete most of it.  That is exactly what happened:  the first appointment in October had ended after the audiology test portion: a simple hearing test in a quiet, sound-proof booth!  When the audiologist entered the room to review the results after I had just stopped seizing, her perfume sent me into more violent episodes.  It took a long time to recover from everything as I sat in a cold chair in a long hallway, staff and patients busily walking by . . .

They did the best they could with my atypical “case” perhaps.  However, the room with the sound-proof booth was already booked for the next patient and the schedule, the schedule, THE SCHEDULE must go on don’t you know?  Such is life in modern medicine these days.  It was a very desolate feeling to sit there with my unsupported head banging around with no where to lie down to minimize injury.  Gratefully the technician was very nice as she escorted me to my “recovery chair,” and later offered to reschedule me.  Reluctantly we settled upon the last day of the year:  that was yesterday.

See Part 2 for the rest of the story . . .

 

 

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!

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.

Sending in the big guns

As the old Kenny Roger’s song, The Gambler goes, ya gotta know when to hold ’em, know when to fold ’em, know when to walk away, know when to run . . . .

Today I chose to  . . . RUN!!!

Yes, it’s time for another crazy Lyme story.  Grab a cup of coffee and here we go:

The sharp neck headaches continue to be menacing, even with the recent slight slowing of intensity, duration, and frequency of seizure attacks.  Six months of intense daily episodes and a total of 1 1/2 years since they first began have taken their toll on my deconditioned frame.  It’s like having a little fender bender several times per day in a car that’s a little too small to support your head and neck correctly:  thrashing around, repetitively in one direction then another.  Enough is enough already!

Enter into the picture a new chiropractor.  He was referred to me by Dr. N because Dr. N thought he would provide a more comprehensive approach to treatment.  Dr. N has a no nonsense orthopedic practice that offers spinal decompression and traditional chiropractic care.  Dr. N had taken a long time to contact my Lyme Literate Medical Doctor (LLMD) so I kind of wrote him off after the first 7 treatments.  I wanted Dr. N to coordinate my care with the LLMD since I was experiencing so many tic and seizure attacks during treatment.  Paradoxically, even though I had seizure attacks during every chiropractic visit, I was feeling better!  The neck headaches had diminished, my range of motion had significantly improved, and I was back to taking short walks despite the ongoing episodes in the office and at home.  At least part of my body was functioning better!

But by the time Dr. N finally called me to share the results of his consult with my LLMD, 3 weeks had passed.  Dr. N referred me to another chiropractor whom he felt had a more “comprehensive” approach.  He was convinced that Dr. H could help me.  Seriously?

After meeting with Dr. H today it is pretty clear that they probably barely knew each other.  Dr. H had worked in the chiropractic building that Dr. N purchased when Dr. H opened his practice over 10 years ago.  I doubt that Dr. N knew much about what Dr. H really did as a chiropractor.  Today I met a wacko pervert salesperson who barely knew typical chiropractic treatment lingo, for example, pushing off an “automatic activator” as a type of chiropractic care.  The device looked like a football mouth guard with rubber tips attached to an electric handheld jigsaw.  Frightful.  I wondered if he had made it himself?

Shortly into what I thought would be a chiropractic exam, Dr. H asked if he could pray with me.  He had already professed to be a “Christian” and pointed to the pictures with scriptures on it in his waiting room.  Well that is nice.  Usually I look for the framed college degree certificates and a current professional license document — I did not see either, anywhere.  I said, “I guess so,” about the prayer thinking that I would learn a little about what he truly believed.  I had already disclosed that I was a Christian.  Ever notice that so many people throw around the term “Christian” and it has nothing to do with a heart surrendered to Christ?  The prayer was nice.  Then the “shoe salesman” song-and-dance began.

Dr. H’s sales pitch began right away guised as checking acupuncture points whilst holding a bottle of this or that supplement.  Later I recalled that he seemed a little nervous and displayed a very intense affect touching the pressure points around my rib cage.  I have seen many different chiropractors and acupuncturists in the past perform a similar exam so this one was not unusual, except for the collection of bottles.  His mannerisms were also unusual however.  He had started my visit 20 minutes late while finishing up with another patient.  (That patient left with a big bag of new supplements.  Hmmmmmm.)  I had mentioned at the beginning of my appointment that I needed to leave at a certain time (to go to the hospital to have my external IV flushed) so before long he started speaking faster and faster:  repeating himself, referring to the time, and bringing out a few more bottles.  Dr. H pressed for agreement with his assessment:  that the chiropractic adjustments would not hold unless I started a heavy metal detox protocol before my first adjustment.  The appointment today would be for “just talking.”  Would I like to start the protocol today?  Could I come back tomorrow to finish up the physical exam?  Or how about later this afternoon?  He could even meet me at his office at closing time!

Did I mention that his prayer sounded good?  Yes, it sounded like a typical prayer except for one word:  undressed.  He prayed to the Lord something about wanting help to “undress” the issues that I was having to be able to help me.  Undress?  The word stuck in my mind throughout the appointment.  What kind of a prayer is that?  Undress!  What kind of a medical term is that?  Undress.  Where the h*%$$ is your mind Dr. H?  I certainly am not a bombshell these days and was dressed very plainly with partially wet hair.  I would assess he is approximately the same age as I am.  SO WHAT.  And where is your office receptionist?  Do you always see female patients alone in your office in a more secluded part of the office park?

I did what I could to state that I would not be interested in any additional products at this time since I had just started IV treatments and could not risk ingesting anything else new.  I was interested in chiropractic care by a chiropractor who was skilled in manual adjustments of the spine.  He mumbled something about “manual” adjustments.  He could do those too but sometimes a patient needs the mechanical treatments of a device like the “U” jigsaw device.  I gathered my things as he was speaking and prepared to leave the office.  I paused and clarified if I needed to make a payment for his “consultation” and he said “no.”  We were “just talking” and I could take care of that in the follow-up appointment.  I said that I would need to call him back and went out the door.

Sitting in my truck I felt a strong tic zip rip out of my frame and jerk me around.  At this point I was aware that the session I had just endured was very intense and that there was a strong essential oil-type scent in the office and even stronger in the examining room.  Dr. H denied the use of any scented products and had opened the two windows for me, after which I expressed gratitude.  He also said that he was not aware of any water damage to the office (that would indicate a latent presence of mold).  So what was I reacting to now?  A short seizure attack followed.  I was pretty shook up that I’d had another attack in the middle of the day!  Why is this happening when I was not bothered at the time by the herbal scent in Dr. H’s office.  Of course I was definitely upset about Dr. H however!

I sat for awhile to allow time for my psyche and sensorium to recover.  Sometimes I never really know what sets off an attack.  Much later this evening I characterized the experience, the incident at “Health and Wellness” something or another as a form of spiritual warfare.  That guy was a fraud and weird!  He never smiled.  And he pushed products before ever completing a traditional chiropractic exam.  Yes, he completed a clinical interview of my history, reviewed the information that I provided on his intake form,  and threw up my x-ray films on his light box.  Yes there were two models of a spinal column on display in the corner and the typical educational posters on the wall that you might find in a chiropractic office.  But everything else was odd, was inappropriate.  Nope, I won’t be seeing Dr. H again.

One problem remains:  my x-ray films are still at his office!  I had not retrieved my films in my state of recovery after the seizures and time pressure to get to the hospital.  Well after talking to my husband about the whole ordeal tonight, what needs to happen next is perfectly clear:  it’s time to send in the BIG GUNS!  Steve graciously agreed to pick up the films for me.  Yes!  For me to go back could be an abusive encounter.  For my 6 foot 1 man of steel to go back to the office would be a different encounter altogether.  Tee hee!

Yeah, I was wrong when I was single, joking with my spinster girlfriends just 7 years ago:  sometimes you do need a man.  Sometimes you need to send in the big guns.  And this time I am grateful to have had some wits about me to get out of there before I made a bad decision or something worse happened.  As it turns out, Dr. H’s chiropractic license is current with the State of Indiana.   He has no sanctions or restrictions on his professional license.  Good for him.  Too bad for his next female patient.  I guess I’m going to have a neck headache a little longer.  This other headache is history!