Category: Recovery from Serious Illness: Lyme, CIRS, & More

Sending in the big guns

Published on by Jesus is for the Wounded2 Comments

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!

One step closer to something good

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HOPE eBook Cover

So grateful to release the cover of my upcoming eBook!  Enjoy the most encouraging and meaningful blogs updated and all in one place with Bonus Pages too.  Preorders will be available FOR FREE for a few days before it goes live!

Gentle Readers always get da best ya know.

Be sure to watch this blog for upcoming announcements and just a little enthusiasm coming from my home to yours soon!

Take care, Just Julie

They really need to work on their transfer technique!

Published on by Jesus is for the Wounded5 Comments

Sometimes I simply take for granted the skills I have as an occupational therapist, even when this OT is on an extended medical leave.  Allow me to explain  . . .

The writing was on the paneled walls metaphorically today when an appointment for a medical evaluation by a new doctor turned out to be in a water-damaged building (WDB).  I had a bad feeling when I noted the address of his office:  in an older part of town with offices that were probably built at least 25 years ago.  I knew that another building down the street was flooded during a bad storm last year so it seemed possible that this building could be:  1) older, 2) a WDB, and 3) laden with automatic air fresheners to attempt to cover up any residual odors!  What I did not count on was the receptionist/medical assistant wearing perfume as well!

The scent of Dollar Store air freshener greeted me inside the glass doors of the 70’s style concrete medical office.  The scent was even more concentrated in the tiny office of Dr. O.  I had barely finished the new patient paperwork when the neurological symptoms hit.  Oh boy, here we go again!  I looked up and saw water stains on one of the grayscale ceiling tiles; there was at least one water stained tile in each room I entered this afternoon.  The medical assistant received my completed paperwork and took me back to the patient screening room.  No sooner had I stated my usual precautionary mantra of what to do/not to do if in case of “neuromuscular events” before the random fireworks of tic attacks began.

I aced the eye exam and I was pleased.  Steve and I have not had the funds of late to update our eye exams or corrective lenses for the past 2 years so it was good to know that perhaps not much had changed for me.  Conversely, the nature of my Doctor visit was about to change drastically.  The medical assistant (with great purple-striped fingernails) invited me to sit in the exam room and wait for Dr. O.  As soon as she closed the door, my whole world began to rock-n-roll.  Tic then seizure attacks are a real bear sitting up in a chair because of the whiplash effect on one’s neck.  Everything from the spinal column outward stiffens and voluntary movement diminishes the longer and more frequent the attacks continue.  Things were not looking good at all.

Dr. O entered the room and turned out to be true African instead of Indian as I had surmised by the spelling of his name.  He asked, “why are you here?”  I said I was there for a “medical evaluation.”  He asked a couple more brief and concrete questions and my ability to respond quickly degraded as the seizure attacks became entrenched.  Attempts to speak or move exacerbated the involuntary tremors and shaking; to try and tell him this while my face was becoming constricted and torso was pulling forward in a writhing, flexed posture was quite a challenge.  “I need to stop the exam,” he announced rather emotionlessly.  I encouraged him to wait a moment.  He persisted with something about not being able to do his exam with “all this” going on.  Yeah, I knew that but it was better that he said it and not me.

Two things happened next that amazed me.  First and gratefully, the medical assistant and Dr. O realized that they needed to get me outside for some fresh air.  They brought in a wheelchair and asked me to get into it.  I replied that I could not move!  Through extremely strained vocal cords, jaw, and body posturing I indicated that they would have to help me.  The absolutely crazy part was discovering that they had no idea how to transfer a patient from a chair to a wheelchair!  I guess I take basic skills like transfer technique for granted.  It’s taught in 3-week Certified Nursing Assistant training classes and most workshops on back injuries.  And yet there I was, an occupational therapist with 30 years of experience in a completely debilitated state, instructing 2 experienced healthcare professionals how to get me the heck out of that chair so I could get some fresh air.  Eventually they realized they needed to lock the brakes, flip up the footrests, and so on.  I just couldn’t utter all the details that were needed at the time ya know.

The second amazing thing was what happened next.  Once outside and all the way through the ordeal I kept uttering apologies, thanking them for helping me, and trying to regain some type of control over my physical faculties to no avail.  I simply had to wait it out and focus on just breathing.  I let them know the latter.  It was in the mid 90’s F outside and it felt great in the shade!  Fresh air at last!  At least the air was fresher outside than on the inside!  The two healthcare professionals made a plan for what would happen next since they had other patients to see (but I did not see any in the waiting room) and could not leave me outside the building in a wheelchair alone.  The sweet gal with the fingernails called my husband at work and he was now on his way to rescue me, take me home.  However the plan also included transferring me from wheelchair into my truck so I could wait there and not in their wheelchair.  Using the same ersatz technique, they moved me like a sack of potatoes into the elevated seat of the passenger seat of my truck, turned on the ignition and air conditioner, locked and closed the door, then retreated back to their office.  Geez!

I gradually shifted my tender “sack of potatoes” body around to support my wrenched head and neck.  The pain, the fatigue, the grief reaction, the embarrassment, the horror of it all began to sink in.  I could barely move my arms to wipe the tears and snot running down my face.  My central nervous system was still in “tic mode” so any efforts to move flared the remaining shakes.  I wiped my face with my sleeve anyways.  From here I simply had to ride out the rest of the storm until Steve arrived.  Such is the very inconvenient hell of Chronic Inflammatory Response Illness.  On 1 1/2 hours of sleep from the continuous tic attacks the night before and now after surviving a 3-hour ordeal at this ol’ medical office, my beloved found me an graciously took me home.

When I started writing this account of my day today, I intended to tell a really funny aspect of what had happened.  I guess I needed to vent first.  This was a very difficult experience as you might imagine.  Probably the only good thing that will come out of it will be that there is absolutely no way that Doctor can say that this illness is all in my head after what he witnessed today.  I’d experienced a couple of “MDs” lately who tried to suggest that these seizures are psychological.  I was thoroughly disgusted!  I’d have to be a real sicko to imitate over 200 episodes of wretched and painful pre-tics, tic attacks, seizure attacks, and convulsions in a recent 44 day period that I tracked for my medical record.  Who would do that?  The answer:  no one.  I must trust that Dr. O will write what he saw and nothing else.  No “armchair psychiatry” welcome here please!

****************************

Funny thing happened on the way back to my truck after a medical appointment today:  I started to notice a host of crazy paradoxes despite my wretched situation that are quite humorous if I just changed my perspective a bit.  Here’s where I’m going with this.  Imagine these headlines for my story today:

Female medical center patient coaches physician and trusty assistant in wheelchair transfer technique to keep them from tangling her feet in the leg rests of the rolling and rickety wheelchair.  It’s a good thing that she’s been working in rehabilitation 30 years, eh?

Compromised patient slumped in non-ambulatory state must get back into her mid-size king cab truck loaded with dirt from a garden dig earlier this Spring.  She’s weak but her 2-ton truck is strong for sure.

Collapsed wifepoo recovers in her air-conditioned vehicle while her maximally machismo husband drives up to rescue her in his Dodge Magnum RT speed machine loaded with a 21-foot racing surf ski on his roof.  The dude looks like he could fly the stud mobile into orbit and launch a Tomahawk missile into space from the heavy duty aluminum racks bracing the sleek white projectile.  When she recovers, she and her co-pilot River Bear will fly shotgun in their 24-foot outrigger canoe on the roof one day soon.  Story at 11.  

Yeah, that’s more like it!  What a way to get a story, eh?

Your God is not big enough

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If you can’t have peace when sick in bed on a drop dead gorgeous afternoon . . . your God is not big enough.

When the dog looks at you with worried eyes because she heard you yelping from the bedroom with convulsions and you wonder if you’ll survive the day . . . your God is not big enough.

A doctor gives you a new medication to calm you down and maybe even lessen your suffering, it doesn’t, and you wonder if you’ll ever get past the wretchedness, the repeated disappointments . . . and your God is not yet big enough.

When you are frustrated that dinner is finished after midnight, you are up on the internet after 2:00 a.m. and you lose faith that you will ever have a normal life . . . your God is not big enough.

If every day poses a new test to your resolve and there is none left . . . you have not learned to rely on a God that is big enough.

When your blog glorifies your own accomplishments, makes you appear stronger than you really are, and claims to know anything separate from the One who made you . . . you have not allowed your God to be big enough.

And if you can find a way to convey how small yet how loved you really are, how your forgiveness spans as far as the east is from the west, and how there truly is hope beyond Lyme disease or what you can see . . . your God is becoming big enough to believe.

So if you are suffering in any way like me and find yourself in doubt, in pain, despairing, angry, lonely, or worse, it’s time we both face the fact there is a God who is big enough to carry all of our burdens.  Let us come before His throne of grace this day and pour out our hearts to the One whose gracious thoughts towards us outnumber the grains of sand on the earth.  He wept for each one of us, He sweat drops of blood for all of His children, He died a tortuous death for you and me, and He rose from the dead to save us from the burdens of all of our troubles in this life.  In time, He will come again for you and for me to live with Him forever in paradise.

As you ponder this, I invite you to get to know just a little more:  the God who is big enough.  And if you have not yet invited Him into your heart, consider doing so this day too.  You will see what a difference His love will make.  Then you will say about the Lord Jesus Christ, His Word, His hope, His promises, the adventurous and mysterious life that he bestows upon us:  I just can’t get enough!

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Keeping Calm

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Jesus Calms the Storm

22 One day Jesus said to his disciples, “Let us go over to the other side of the lake.” So they got into a boat and set out. 23 As they sailed, he fell asleep. A squall came down on the lake, so that the boat was being swamped, and they were in great danger.

24 The disciples went and woke him, saying, “Master, Master, we’re going to drown!”

He got up and rebuked the wind and the raging waters; the storm subsided, and all was calm.25 “Where is your faith?” he asked his disciples.

In fear and amazement they asked one another, “Who is this? He commands even the winds and the water, and they obey him.”  (Luke 8)

This is such a great story isn’t it?  The newbie disciples did not know that there was no way that they could drown with the God of the universe in the boat with them!  And further, the story illustrates the omnipotence of God, that even the raging seas obey Him.  This story also reminds me of a message from Pastor David Jeremiah in which he taught the truth that a person in the middle of God’s will cannot perish until the Lord’s work is completed in him or her.  “Cannot perish!”  Wow.  Sure makes my fears and worries worthless.  If I could just remind myself of these truths in the midst of my own storms then surely I would be a better instrument for the Lord . . .

I might have made some progress last night.  Allow me to explain.  When reeling from 1 1/2 hours of relentless seizure attacks, I eeked out to my husband, “I need help.”  Within moments were on our way to the emergency room of a local hospital.  All I could think about was, “thank you” to Steve and, “I’m going to get help.”

Getting that help took a long time.  First there’s the registration, then the review of the bazillion supplements, compounded medications, and meds, and the $100 emergency room co-payment.  The ER Doc asked a few questions, called my family doctor, and a nurse started an IV.  200cc of fluids and some pain meds began to flow through the sore IV line in my frail forearms.  And amazingly within about 20 minutes, the seizing stopped.  Praise the Lord!  I actually started to feel sort of normal.  Even the neck headache from the thrashing of my head went away.  Wow.

What I did not expect was the diagnosis.  While I am not going to go into the details here, I will say that I was shocked.  Both Steve and I did not agree about what was written on the page.  Sensing the anger rise up within me, gratefully, I started to pray instead:  Lord, help me to handle this as you would.

I asked to speak to the ER Doc and expressed my concerns.  He said that to change the diagnosis would be fraud.  I believe that I respectfully disagreed and stated that as a licensed healthcare professional myself, I understand both the responsibility of medical documentation:  to get it right and to respect the future implications for the patient.  I thanked him for the treatment that stopped the seizures.  Later I chose to “qualify” my signature on the discharge instructions in a way that indicated that while I received the discharge paperwork, I did not agree with its contents.  Then we left.

It is now 28 hours later and I have not had another seizure-like episode!  Praise the Lord!  The “seas” remain calm and I was able to get some restorative sleep; I even caught up on a few errands this evening with my pup in tow.  I have begun some online research related to my experience of the past day and started pounding electrolyte replacements to keep myself hydrated.  My Lord is the only one who knows what the next day holds for me . . . will I make it to an unrelated doctor appointment tomorrow or even a quick outdoor outing with my hubby mid-day?  Or will the attacks return as I lie on the bed a few minutes from now?  The latter has been my life for virtually all of the past 1 1/2 years . . .

Keep calm.  Keeping calm.  Trusting that the Lord who calms the seas can not only get me from this evening to the morning, He can get me through all of the stormy days of my life.  Oh Lord, care for my beloved Stevers as well and restore Him from the stress of riding things out in the rocky boat with me.  May we both keep our eyes fixed on you with amazement for all that you have done and all that you have yet to do in our lives.  Thank you for the help.  I will entrust you with the details as I lay them at Your throne of grace.

Goodnight all,  Just Julie

Psalm 121

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