Tag: seizures

Brief treatment update

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Here’s a brief update in my continuing adventure of recovery from Lyme, fibro, mold, and whatever:

Saw a new chiropractor for 7 visits and while the treatment got rid of my headaches and increased my overall ability to move, I had seizure attacks every visit!  I finally got word this past week that Dr. N did talk to my LLMD as I had requested.  Still  Dr. N referred me to another chiropractor for more “comprehensive” care.  That did not work out so well.  (See posting from Tuesday!)  I’ll probably go back to Dr. N after a few more magnesium treatments and after I’m able to drive 30 minutes to his office several times per week.

Began treatments of IV magnesium on Friday the 13th; spent the evening with seizure attacks/convulsions followed by 7 hours of tic/seizure attacks into the morning.  Yipes!  Had a better day by the time Sunday came, albeit weak from the previous 2 days.  (Only had one episode that night, on the way home from our Sunday church home group.)  Getting the IVs started has become an arduous, painful process with a minimum of 2 wretched sticks before the RNs find a suitable vein.  What follows on the day of treatment or the day after appears to be a herx reaction or healing crisis of sorts.  This treatment is scheduled to continue for a month; supplemental magnesium is a promising treatment for me despite the difficulties.  I’m praying that the Lord sustains me and that my tender vessels endure it!   Tomorrow I’m going to let them give me the PRN narcotic pain med. with the treatment.  I just need a break from these awful neck headaches that come from the wrenching head-n-neck motion during attacks.  Gratefully, there is improvement with one fewer attack per day, barely a few tics last night and significantly less chest compression pain!  Yes!

Rife or Beam Ray treatments are on hold.  My tolerance for this sound and light wavelength technology was decreasing so it’s on hold for now.

Waiting in the wings is a new round of low dose antibiotics after some lab testing pending soon to rule out a new UTI.  Got lots of itchy, burning, ringing, stinging, stabbing, aching symptoms all over right now possibly flared up by the stress of the IV treatments.  “Rest” is my focus at the moment in my weakened state.  I do make dinner most nights, however!

A neurology appointment is now scheduled for October 1st at the Indiana University Medical Center in Indianapolis.  IU is the go-to place for persons in the Fort Wayne area needing a special consultation.  So to Indy we will go at 5 in the morning.  Hey, if my beloved can take off at 6 in the morning for a kayak race, 5 should be a piece of cake, right?  Gooooo Steeeeeeve!  As for me, well I might still be up from the night before!

Steve and I are grateful for some help with a meal once per week from the lovely ladies at our church.  It seems like the night they bring dinner something bad happens later on, like an emergency room visit 2 1/2 weeks ago.  Their generosity is a real blessing and it sure breaks up the isolation for me when they stop by!

Well that’s the main stuff or at least the news for the masses.  If you wouldn’t mind praying for us that would be great.  My heart is tender for Steve right now because we had to cancel our trip to see his grandson for Jackson Rees’s first birthday and to see some dear friends in South Carolina.  I really need Steve in the evenings when the attacks and physical episodes of collapse are usually quite nasty.  This would be too much for a female friend to handle if a gal was staying with me at night and Steve went out of town by himself.

Steve has travelled alone 3 times since this process of illness began for me nearly 2 years ago.  We have cancelled a trip before but rarely decline local invitations.  Steve just goes to them without me and that is cool with me.  Travelling to Arkansas this past summer was very hard on me despite a couple of nice visits during the 5-day trip.  So to cancel the South Carolina/North Carolina trip is just what we have to do this time, although it’s a bummer.  JR is going to get a big box in the mail real soon!  Anyways, if you wouldn’t mind praying a prayer of sustaining grace (for me) and strength (for Steve) that would be super.  The Lord has helped us and even blessed us.  We are trusting Him and hopeful for all He has in store for us.  (Proverbs 3:5-6)

Take care all,

Just JulieProverbs 3.5-6

Sending in the big guns

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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!

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

psalm 121 3

Let there be light

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I am so glad I stumbled upon a videotaped performance this evening of the talented and zany Christian communicator, Patsy Clairmont.  My own strength is waxing and waning at the moment so she provided the little something extra I need to make it through to tomorrow.

In her show, Patsy described her search for words to comfort a dear friend battling cancer and found it in Genesis 1:3.  Here God reveals to us through Moses the beginning of the story of life as we know it:

1 In the beginning God created the heavens and the earth.2 Now the earth was formless and empty, darkness was over the surface of the deep, and the Spirit of God was hovering over the waters.

3 And God said, “Let there be light,” and there was light. 4 God saw that the light was good, and he separated the light from the darkness. 5 God called the light “day,” and the darkness he called “night.” And there was evening, and there was morning—the first day.

Patsy points out that the first words the Bible records of God speaking are for there to be light.  Ah yes, light dispels the darkness and guides our way; light is a symbol of God’s glory and presence throughout the Bible, and so much more.  Intended as a meditation for her friend, the simple message of the verse, “let there be light,” became a joyful encouragement to both of them.  I invite you to view the You Tube video for the moving story:  http://www.youtube.com/watch?v=-HpRO8g9Qds

This evening was a dark one for my beloved husband, Steve, and me.  He’s exhausted from the demands of work and his heart breaking as he watches his wife thrash about with convulsions every night.  I am broken, depleted  and in a good deal of pain most evenings from the same and the seemingly lack of direction in my treatment.  It seems that every time I start on a new course of treatment for Lyme, Chronic Inflammatory Response Syndrome or the myriad of related conditions I get sidetracked or have to stop due to increased convulsions.  The current pattern of some form of these “seizure attacks” is for them to occur about three times per day on average with one miraculous 23-hour break earlier this week.  Go figure.

I need the verse, “let there be light” to wash over my burdened soul this night.  I need my Jesus to be the light of my sore heart, the light of my weary steps.  I need my doubt to be transformed by blind faith in His shining light.  I need there to be light.

And so I say to you as I write this in the middle of the night, scared to go to bed for fear of more attacks, “Let there be light.”  And to my heavenly Father, “Let there be light.”  And to those exasperated by the duration of my illness, “Let there be light.”  And to all of those who are weary, “Let there be light.”  Together we can find His light and know what that means in our own lives as the night gives way to the day . . .  zzzzzzzzzzzzzzzzzzzzz

When you are no longer brave

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If I were left to my own resources this day, I would not make it.  Thankfully, there is more.

And the only resource worth pursuing is the One that is perfect, all-knowing, all-powerful, ever-present, love incarnate, eternal, and dwelling in my broken heart.

If I were to merely go with what feels right or good, I probably would not get well.  Thankfully, there is more.

And the only emotion worth feeling is that of humility as I lay down my metaphorical sword and let the One who weeps for me wail His own mighty hand of power.

If I were to measure my patience, my progress by the time already invested in recovery or making things right, I could not find a tool with a good enough warranty to last long enough to even bother.  Thankfully, there is more.

And the only period worth measuring is the one I must accept:  the time that is indefinite, outside of a calendar or watch and yet fully calibrated and infinitely accurate in the hands of the Creator of time itself.

So if I were to admit that in the convulsive state of my existence that I can no longer go on I must proclaim on faith that there is more out there somewhere.

And my only hope lies in the protective wings of my Lord and Savior, the Alpha and the Omega, my Immanuel and King.  So Here I am Lord .  .  .

A hymn:  Here I am Lord.