But the old friend has no name

My hope went underground when the testing described in my last post revealed nothing of value.  I was crushed.  My beloved hubby had to take part of a day off of work and I had to take two drugs to be able to tolerate the contrast dye.  My doctor sent over new orders to the hospital on the morning of the test, creating further complications.  That new test was not yet authorized by my insurance company.  So would I have to come back and take more drugs, Steve take more time off of work when both tests could be done that day within minutes?  What shall we do?  The radiology staff nor us knew what to do.

We decided that since I do have a secondary insurance, to proceed with both the CT angiogram of the neck and the CT angiogram of the head that day.  The views would be with my head and neck in a neutral position, not in neck extension (which is the position that triggers convulsive episodes).  So I decided to lie on the exam table with my neck partially extended.  True to form, soon after they pushed the iodine contrast dye into my veins a tic then seizure attack erupted!  I couldn’t speak.  Steve let them know the course that these things take so the staff lifted me off the treatment table, onto a gurney, and into an empty room in the adjacent MRI suites.  There we were in the dark until my personal hell decided to stop.  (See here if you haven’t seen it yet.)  Steve helped me to the bathroom via wheelchair, the tech wheeled me out to the exit of the hospital, and we were on our way home.  Somehow I cleaned up once home and got myself to bed to sleep off the drugs for the next 6 hours!  The stress, the drugs in my body diminished thereafter.  All there was left to do was deal with the trauma of what had happened and wait for the test results . . .  No problem, right?

What followed represents the good and the bad of the patient having access to her own test results through the electronic medical record mandated by the Affordable Care Act.  I got my test results 3 WEEKS before the Doctor appointment scheduled to review them! The test was on a Friday and on Tuesday I was reading the radiology reports.  I was crushed.  There were no vascular anomalies that would explain why tipping my head backwards, certain chiropractic adjustments, sleeping on my left side, and a host of other identifiable kinesio/sensory stimuli trigger violent convulsive episodes.   Further, the question remained as to why these episodes are continuing, albeit of less intensity and duration overall, 6 months after treatment with specialized dental appliances?  This treatment brought me an 80% reduction in seizure attacks.  But after chiropractic treatment resumed, that number started to go down:  the episodes had started to increase again.  The “old friend” has returneth but still has no name . . . no cause.

In a future post, I may disclose the profound effect of this dead end in my seven years of battling a serious illness.  Last week after yet another difficult medical process revealed no answers, I really wanted to die.  Within a day that feeling changed and I continued on with my activities of daily living, some volunteer projects, and prepared to attend a women’s retreat within a few more days.  The time away helped some.  I don’t want to die I just don’t know really how to live this way anymore.  There may be some clues in the test results of what to focus on next related to a thyroid condition — or maybe not.  My veracious researching a cause, a cure has come to a screeching halt.  Right now is the time for me to dwell in the eternal space of my Savior, Jesus Christ and lie this illness at the foot of His Cross.  The lies of Satan and his tools of discouragement can go to hell with him, period.

Can’t say much more than that right now.  Tomorrow I need to be up and energetic at an event I thought I could volunteer at in preparation for another project of greater interest to me.  We’ll see how it goes.  My alarm is set.  But the get up and go, the drive in my heart is more asleep than I am at the moment.

Maybe something good will happen soon?  I’ll letcha know if it does, Gentle Reader.  You are always on my heart and the first to know as usual, k?  JJ

The old “friend” hath changed

When time determines a revisit to old friend you never wanted anyways

You step back and wonder what to make of the unlikely bedfellow:

The one who keeps you up at night in the most ugliest of encounters,

The one who left but came back with a nastier stench and puzzling cry.

He must be male for his strength surpasses my own

Unpredictable now for the feminine who thought she’d figured him out

But not so, little one, for he now brings new mysteries to untangle

And the next round of testing is still 48 very long and arduous hours away.

How will I survive this round with return of the wretched head-banging

The one that collapses my left side then right, no mostly my left arm and leg?

Unable to speak, the screams erupt from my frame twisting as it cramps

My neck reminding me of a symptom that has never left from the last time he came.

The chiropractic whiz-bang, the Florida dental magic held so much promise this year

Some energy returned as the puffiness in my face diminished, my, my indeed

Amazing things happen when your body doesn’t seize the very breaths of its life:

Ones that my body now craves as I struggle to chew the morsels my love fed me tonight.

vertebral arteries, seizures, convulsions, vertebral artery test, CTA, angiogram

No, this masculine drone has a different genre entirely, one triggered when I lean back

So scan it we must with more drugs to keep my body from freaking out with the dye

To see if vertebral arteries bear any aneurysm, stenosis, blockage, anomaly oh my

And cause much of what remains of this wretched hell that has returned, that’s no lie.

Perhaps the neck treatments of late, the dental appliances for TMJ

Have taken pressure off for a time so I could regain my strength for the finale

Might we yet find the real trigger of all of this illness nearing 7 years next month (?)

Hang tight my shiny knight, for very soon we might really know the “why!”

JJ

 

The Chips Under the Bed

They should be alright after about a week in the heat, right?  Ugh.

Usually when “the bus driver” and I come home from a camping trip, we empty the travel trailer of all food that very night.  Of course it may be 3 in the morning but it all comes out nonetheless.  Not this time.  This time was very different.  The unopened bags of chips are still in the storage compartment underneath the bed and we have been home for SIX DAYS!  Gratefully the ants on the driveway have not found them yet!

I really don’t know where to begin to tell the story of our attempt to bring a family member here from out of State to visit, to maybe live with us.  This was a huge undertaking for all three of us:  a journey that began over 6 months ago that was actually cancelled the first time around.  Perhaps it will be best to unpack the situation in a few blog posts over time as I begin to recover from what was largely a failure.  But there is good news:  my Aunt is healthier, stronger, more mentally sharp, conversant, happier, and overall functioning significantly better than when my hubby, Steve, and I picked her up in Florida 8 days ago.  As for me, not so much.

Last night was one of the most horrific scenes of recent memory.  After a total of 12 hours finally getting some errands done with a late night Doctor appointment too, I had the most frightening convulsive episode imaginable.  My threshold of reactivity had been plummeting with each passing day that my Aunt was travelling or living with us.  We had taken extreme mold avoidance procedures and she was wearing all new clothing that I had specially prepared for her.  Her belongings from Florida were cleaned and secured in plastic storage bins in our garage; only doubly-freezer-bagged supplements and medication were in the house in a remote closet.  She lived in an inadequately  maintained and moldy living environment laden with the fragrances that most women like.  We took extreme measures with her stuff but never considered the detoxing of her body to be the toxin most noxious to me; her skin scent reflected several different problems beyond hygiene and no amount of bathing or washing of linens/clothing was helping me fast enough.  I crashed fast.  She, on the other hand, (in our very clean and climate-controlled home with exceedingly healthy meals, rest, and loved ones nearby) quickly regained skills and energies she had lost in the past year.

I was unpacking groceries from our local Meier when an odd feeling hit me.  The warning signs that I learned to recognize in the past when at my sickest with this complex/biotoxin illness had changed.  The odd symptoms ramped up so quickly into involuntary full-body shaking episodes that I barely had a time to get to a safe position to prevent injury.  These kinds of episodes are very dangerous!  So I was standing in front of a counter filled with plastic bags of groceries when my eyes drew in to close and all I could do was kind of lean-and-cling to the edge of the refrigerator as the convulsions began.  They went on and on for at least 20 minutes until my husband would discover me and carry me to the bedroom.  The repetitive oscillations injured my spine from one end to the other.  I could not move my body and was terrified of falling.  Trying to relieve the cramp in my right calf triggered a rebound, a worsening of the episode.  I just held on . . .

Things were no better once lying down.  The involuntary shaking traumatized my neck and my body temperature began to drop.  I could not speak when I needed to and breathing was difficult.  Time either stood still or passed along quickly, I have no idea which one.  I couldn’t even cry out my angst until much later.  Then the visual anomalies began of swirling shadowy circles on the ceiling of our bedroom.  Steve left and returned a couple of times as he tried to help figure out just what caused this and more importantly, what to do to make it stop.  He sniffed my clothing and found them to be musty.  That discovery pointed to my hours trying to get special requests for everyone at the grocery store — a water-damaged building that was problematic for me before their remodeling.  I guess it is still a problem!  My Beloved removed my soiled clothing and the amplitude of the shakes lessened.  But by then the weird, demonic-like writhing and vocalizations had already begun.  It is terrifying to endure this hell.  I prayed for the Lord to take me.  I searched for the white lights but did not find any.  Three hours went by before I could function again . . . what was left of me, that is.

Repeated biotoxin exposures had lowered my threshold of reactivity.  I was at the lowest point, last night, after doing significantly better these past 5 months.  Looking back it all makes sense:  cumulative exposures began when helping my Aunt for five hours on each of two days to do laundry and then pack for this trip in her moldy State of Florida.  It rains there every day now and she has had water damage in her condo several times without remediation.  I wore a charcoal mask during our time there but the conditions were still unbearable.  (Even Steve agreed and had some symptoms.)  Have you ever had to wear a mask in 90 degree heat and humidity while doing physical and emotionally exhausting work?  I had a stress rash on my chest, at least 12 irritated mosquito bites, soreness from dental adjustments from my Craniomandibular Specialist in town, and to deal with a cognitively impaired and severely anxious family member who still struggles in facing her brain disease.  The process was exceedingly painful, frustrating, exhausting.

In another post I will outline the procedures that we used to attempt to implement extreme mold avoidance to be able to care for a family member in crisis.  We simply could not leave her in Florida any longer.  For today, I am grateful that I did survive last night because I got to see a miracle in action.  No, it’s not only the organic lime corn chips that are alright tonight.  I am completely exhausted yet stable and have not had any episodes since she left our home around 10:00 p.m. (and I cleaned, tossed bed linens and other things out of course).  This is the first time I have been stable in 4 nights.  The miracle is that when I was able to get out of bed at 5:00 p.m., my Aunt’s friend from Michigan had arrived and was sitting with her on our patio outside.  Well hello Dean!  He was offering to drive her back home to Florida.  While I disagree with many aspects of this arrangement, I was in no position to decline a solution that could help stabilize me:  her now former caregiver in crisis.  She left with him after some dinner, some packing, some very sad goodbyes.  Our visit wasn’t supposed to end this way!

Aunt Lori with Dean at Dinner 7.12.18

Looks like the chips and me are going to be fine in a little while (as the bags are still out there in the Camplite in the driveway).  Steve is grateful for the possibility of a full night of sleep.  We shall recover.  I am grieved that things didn’t work out with my family member and for the torture I had to endure trying to care for her.  I am glad that we could give her the gift of renewed health; that I discovered where I am at with this ongoing illness; and that our Lord is there to carry us, to act, to make His presence known no matter how hot things get in our lives.  Please join me in praying for my Aunt.  Dean won’t be staying with her very long and . . . I had to let her go from our care.

JJ

Move freely, heal well my dear

 

dancing

The importance of moving

Cannot be understated

The body not the soul,

One’s frame sans the stuff.

Blood flows, lymph drains

Breath deepens, waste can leave

If only we help it with

A little muscle contraction against gravity.

[So easy for her to say to me today!]

I cried in fear

As physical therapy began

I’d been here before

And knew about the score.

But wretched seizures

Met me by each session’s end

My body erased

The good that had ensued.

It could be different

Now that the beast is tamed

Perhaps give way to healing

And actually doing my home exercises?

Ah what a delight that will be

I do see it coming out there

Can almost reach it, so sweet

This is the beginning of healing!

Just had to mourn

Seven years lost since

The time I moved with ease

When no fear waited in every corner.

[Sigh.]

Today marked a new beginning

This time appears to be for real

Thank you my Jesus, for carrying me through

Time to give in to freedom as the healing is now here!

JJ

 

I gotta change my teeth!

Alright.  It’s a few decades too soon in my life to be fussing over fake teeth in a restaurant but that is exactly where I have landed.  Or an acrylic mouthpiece of sorts, that is.  Then there’s the one with metal wires in it.  Aaaargh!  This is all kinda gross, especially with bits o’ lunch in thar!

It’s not your average bear that carries around a bottle of mouthwash in a gallon Ziploc freezer bag with 2 paper towels, a funny little brush and a clam-shell plastic box with air holes in it with a spare mouthpiece in tow.  Gentle Reader, you knew I was not undergoing a normal treatment plan when I signed up for this next phase in my recovery from a serious illness.  After all, who said that specialized dental appliances would stop almost 7 years of daily seizure attacks?

The answer:  no one really.  Persons with Tourettes Syndrome, dystonia, and tics have found relief in addition to persons with severe TMJ or Temporal Mandibular Disorders.  Only one expert mentioned “atypical seizures” and another “movement disorders.”  It was the Lord who led me to  examine my own pattern of symptoms and triggers, led by an observation from an ENT in a recent exam, and extensive research that seemed to indicate that I, too, might benefit from this highly skilled approach within the dentistry profession.  It made sense to me that a Craniomandibular Disorder Specialist would be able to relief pressure on my aching jaw.  If it relieved pressure on cranial nerves in the surrounding tissues as well, then there would be a good chance that many of the episode triggers and the convulsive episodes themselves could go down.  So I interviewed thirteen professionals in the USA  then said, “sign me up!”  My beloved agreed.  Graciously, many wonderful folks helped make it happen.

And I am glad that it did happen.  The convulsive episodes are now EIGHTY PERCENT IMPROVED!!!  Yeah God!  Praise the Lord!  Holy cow!  Cool beans!  Plus every other exclamation of joy I have ever used on this here blog.  Just Julie is going to get well!  I can now lie down and get up from bed most of the time without 30 or more minutes of convulsive episodes.  THIS IS HUGE!  Bonus:  my reactivity to noxious sensory stimuli is also down.  My posture is better.  I am able to eat a few more foods that I have been able to in many, many years without triggering a seizure.  Other symptoms have come and gone yet even the nagging jaw pain is also reduced.  I am looking forward to seeing what will happen over time as the improvements continue . . .

The battle is not yet won, however, as my devices will need adjustments and I’ll possibly need new dental appliances as time goes forward.  This will require significant travel to my Doctor out of State, a leap of faith in the Lord’s provision, and a massive testing of my health status to travel by myself.  Am I up to the challenge?  Absolutely.  We will plan carefully and proceed with caution.  Looks like I am on a good path for recovery at last.  I am humbled and grateful beyond what I can put into words.  Thank you Jesus!

Here are a few pictures from the process from my first week on this new journey.  I look a mess in most of them yet that is because I was very sick going into these appointments.  I had six violent convulsive episodes just trying to do the 5 hours of evaluation and was quite depleted by the time it was over.  Afterwards, my hubby and I were so trashed that we stood in the parking lot late that sunny afternoon and ate every snack and drop of water we had with us!  It took days for me to recover yet somehow I knew that my life was about to change very soon.  Three days later I had another very long appointment to receive my mouth splints.  The changes began within a day and continue three weeks later!  Stay tuned for more good news as this story develops.

Gentle Reader, if you are struggling with serious health issues, I encourage you that the Lord sees your suffering, grieves for you, and promises to be there for you for each and every breath, now and forever.  Call upon His name.  There is “hope beyond” what we can see.  Consider trusting the person of Jesus Christ Who will see you through, carry you this day and always.  I would have never made it this far without Him.  I hope we can share in my joy together someday Gentle Reader.  Our God is good!  JJ

xray, dental, appliances, TMJ, TMD, specialized, dystonia, seizures, atypical, tics, Tourettes, Dr. Ralph Garcia, craniomandibular, disorder, treatment

Assistant Josh took about a dozen x-rays to start the evaluation process.

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Dr. Ralph Garcia takes a detailed history; the smell of acrylics from the lab requires wearing a mask.

125

EMG testing of the face and jaw

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Bite evaluation by Dr. Ralph Garcia

207

Assistant Julie takes photos with and without the new dental appliances.

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Multiple impressions are taken with soft polymers that triggered episodes when the material was cold. Trying to stay calm to get the proper fitting was challenging.

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Waiting room in Dr. Ralph Garcia’s office! We definitely are not in Indiana!

Sunset Beach, Florida, Tampa Bay, wife, husband, couple, married, sunset, sunrise

A little shy first time out in public wearing the smaller of the two dental appliances so I could have a snack while watching the sun go down on Sunset Beach. So grateful that my Dentist’s office was in sunny Tampa, Florida!