You almost lost me

The side effects were just too bad, that Linzess nightmare awhile back

It started with paranoia then gave way to profound fatigue so I went to bed.

Hell met me there, a new kind with seized spikes of lost breath and shakes

Rotational episodes this time then bouncing off the bed with gutteral screams of agony.

What to do now? Thousands have punched my life this decade of intermittent/daily misery

When I can’t even think to pray just stare blankly into my mind’s eye, lids pulled tightly closed.

The visual anomalies reminded me of another medication side effect in a Mexican hospital

When the pregnant young nurse shook nervously as she gave me medication in the middle of the night.

That night I learned the terrifying reality of black boxed hallucinations that you cannot stop or control

You hold on for dear life, wondering if you will ever come away with your sanity, if the side effect ever ends.

So Tuesday night I recognized the pattern from 2009 that ramped up to a break in mentality,

Desperately pleading for a way to think clearly, to get out of the scene stuck on repeat.

“Ozone” came into my consciousness, not spoken just present all-of-a-sudden in my thoughts

But how when I am convulsing, wretching air, terrified of injury as my head and neck thrashed so?

“Just start” came the next words, “yeah right” were mine that followed, sorry, “pray tell how?”

We found a way, my distraught beloved and I. Water spilled about and I rolled around in a desk chair unable to walk.

It was ugly alright: running a medical device that can hurt you while your head drops to bang on the table a few times midway through,

Somehow I got the treatment in me, terrified this time of doing it wrong.

You can damage your lungs you know and perhaps Steve’s if ya miss a step or two.

I drank the water: 400 ml of 70 gamma was the strongest I knew how to process

And within 2 minutes the worst of the wretched, hellish nightmare was over. Then I wept.

A few rebound shaking episodes broke through before it was all over that night

Lying on the bed staring into the darkness this time just dark no weirdness in sight.

If I did not have my medical ozone system I am convinced that tonight I would be in a psych ward somewhere not here

Drugged with anti-psychotic medications, facing weeks of infirmity that’s if the drugs could be cleared from my system at all.

I don’t respond well to medications that affect the brain or “second brain” of the gut

Even a “pediatric dose” can create a crisis ranging from gut issues to this, the worst.

Several days later the seizure threshold remains too low to function yet at my baseline

I’m doing as best I can and taking rescue remedies more often, or rather via nurse Steve, even with the episode earlier tonight.

Be wary of Linzess Gentle Reader. 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.

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EMG testing of the face and jaw

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Bite evaluation by Dr. Ralph Garcia

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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!

So much to consider

Phil 1:12, Philippians, trials, suffering, endurance, Christian, crisis, long term, illness, chronic, humor, gallows12 But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.”  Phil 1:12

Just as this picture and this scripture present two extremes of perspective for the activities of life, they are united in one theme:  we shall rejoice with Christ as our guide!  Yeah, I know that is a stretch . . . but we do know that the God of the universe has a sense of humor too, right?  I mean he created aardvarks, zebras, and tse tse flies!  What’s up with that?  Oh I know that the Original Adam named them all but just how did he do that?  They were all such weird creatures!  So it follows then that humor can help us endure many kinds of extremes, even the ones you and I are facing today.

Take for another example the thieves that attempted to steal gasoline from an RV.  This is a true story:  instead of tapping off the gas line they ended up tapping off the septic line instead!  When the fluid started flowing it was not fuel it was the polar opposite:  stool!  So sad.  Such a righteous punishment I must admit!  And as a grateful owner of a travel trailer all I can say is:  Tee hee with a smirk.  ;}

I cannot say that I can relate to the paradoxical themes of life with much right now with much lightness of spirit right now, however.  I’ll just keep it simple:  there’s some good and there’s some that is not.

On a good note I am grateful to report a widening of social contacts of late.  I’ve reached out to some old friends and some newer gals have jumped back into my world from my local church.  I appreciate the friends that I’ve met online (and you know who you angels of mercy are) and hope we can extend our fellowship.  All of this is good.  It’s amazing how all believers in Jesus Christ share a common unity even when the circumstances of our lives can be so different.  We all have our daily wants and needs; our Lord cares for the desires of our hearts tenderly and for these we can pray in earnest for one another.

On a less good note, new I.V. antibiotic treatments for chronic Lyme disease are going quite roughly.  Yup, revisiting Lyme since the persistent seizure attacks sure look like the episodes of others dealing with the neurological complications that can happen long after the acute infection has come and gone.  It was 4 years ago that I first started treatment for Lyme when things got sidetracked for treatment of mold and mercury toxicity, dental issues, Candida, parasites, and a possible oxalate burden exacerbating fibromyalgia pain.  Use of a Rife machine brought daily seizure attack episodes and treatment of Candida escalated them from 2 to 5 hours of convulsive episodes per day!  I was bedridden the better part of about 4 days each week this past Spring, Summer, and Fall.  So beginning in January I was started on high doses of IV Rocephin (antibiotic) and I remain sickly but out of bed more of the time.  This treatment coupled with the wintry temperatures below freezing have brought incredible pain.  However, the days that I am up until daybreak every night of the week has cut down; tinnitus, brain fog, and other executive functioning skills are sloooooowly shifting for the good.  Sometimes even the pattern of convulsive episodes shift as well (thank you liposomal melatonin!).  Just maybe these past 4 years have not been wasted after all!  It appears that each new treatment has prepared me for such a time as this:  we just might be able to treat this remaining beastly diagnosis and its co-infections to get well . . .

There is so much to consider.  Will I continue on antibiotics long term?  Will my health insurances help us out or cut us off next week?  Will I be able to get a port to spare my aching skin and forearms from repeated pokes and dressings that trigger more wretched episodes?  When would I transition back to more herbal-with-pharm-grade supplemental interventions?  Will the reactivity to mold and fragrances ever come down or do I have to go live in a pristine environment somewhere for a few months later on to fully detox?  How much more stress can my beloved husband, Steve, be expected to bear?  And how will we pay for all of this?

As the frigid Winter temperatures of the Midwest bring more of a sense of retreat than charging forth into the unknown, we are choosing to press on anyways with my treatment for chronic Lyme disease.  I just wear long underwear everyday to keep warm!  We are starting where we are with a local, Lyme-Literate Medical Doctor who has treated dozens and dozens of cases successfully.  I know that to be true.  I have met many of them when we had a local Lyme disease support group.  I noticed that each of us facing this dreadful disease had chosen a somewhat unique path to his or her recovery based upon the damage the infection caused to our bodies and our individual resources.  (See this link for more info on chronic Lyme.)  Perhaps my case was one of the more severe.  Perhaps the Lord had more than “recovery” in mind when He allowed this serious illness into my life.  There is so much to consider that simply was not on my radar over 4 years ago.

If you have found this blog by way of your own journey through chronic Lyme disease or some other serious illness, know that I am praying for you.  There is hope!  You are not alone, Gentle Reader.  Please comment below and allow me, if you like, to connect you with a larger community of those finding meaning beyond his or her diagnosis.  Our Lord, Jesus Christ, grieves for your suffering, your fear, your broken heartedness.  He sees you and will see you through what you are facing as He has done so for me and Steve.  He loves you more than anyone (including the furry pup above who has found his prize squirrel in the sunshine of a better day).

May we both smile some day in the arms of our Heavenly Father for having connected this day, for His glory.  And, um, when we get our prized prey I’ll just say, “please pass the catsup.”  Squirrel on the Bar-B-Que anyone?  Ewwwwww!  :JJ

The Extended Forcast is Good!

Cast your burden on the Lord, and He shall sustain you; He shall never permit the righteous to be moved.  Psalm 55:22

But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.  Philippians 1:12

I am 2 days post surgical removal of 2 root-canaled teeth and THE CONVULSIONS ARE GONE!!!  Yipppeeee and praise the Lord!  This 3 years of daily hell for me and my beloved husband, Steve, is finally over!

While there is still much work to do to detox mercury toxicity and re-evaluate chronic Lyme and mold illnesses, I feel more optimistic that I will be able to tolerate those treatments someday.  Until this week, I was failing.  I was bedridden most every day with convulsive episodes.  The grief and impact was huge on everything from our finances to my aching neck.  My husband no longer got a full night of sleep and this illness had changed virtually every activity inside/outside of our home.  How would Steve find me when he came home from work?  Would he have to make me my pureed dinner and feed me again before bed tonight?  Carry me to the toilet?  Our hearts were weary after 3 years of this living hell.

Nine months ago I began investigating how two sore molars in the upper left section of my jaw might be impacting my health.  Four dentists and three oral surgeons, a cone beam CT, MRI, and pano plus regular x-rays later (including a consultation out of State) we had no objective data to guide us.  Everything looked “fine.”  The teeth had bothered me for over 13 years!  Fifteen years ago I had all my amalgam fillings removed but was never guided to chelate for mercury.  Were there silver filings containing mercury remaining underneath the crowns over these two teeth?  We will never know the answer to that question.  My saliva had started tasting metallic.  Eating started triggering the convulsive episodes.  With Steve’s support, we took an expensive leap of faith and pursued a dental solution.

Additionally, seven weeks before what would become the big day, I started eating only on the right side of my mouth.  Two and one-half weeks later I started a pureed diet to eliminate the chewing action that seemed to make things worse; all this was quite a feat since my struggle to get well led me to eat low oxalate, virtually dairy-free, and completely sugar/sweetener-free, gluten-free, and mold -free foods too!  Another two weeks later and 1 week before the surgery I noticed that using plastic utensils delayed the onset of convulsions after eating.  Even drinking my foods through a straw helped initially then ultimately triggered episodes.  I feared eating anything at all!  The only problem with that was hunger and thirst could also trigger convulsions or make them worse.  I felt trapped!

Three and one-half days before the dental surgery my doctor recommended trying an EMF deflecting device.  “It might help” he said, like so many other recommendations I had received all over the spectrum of traditional and alternative medical care.  After one such technology (a Rife machine called a Beam Ray) I tried 3 years ago to treat “Chronic Lyme,” the daily tic attacks started.  Within a year these episodes would escalate to waking seizure attacks then convulsive episodes lasting 2 to 5 hours per day.  We had tried to shield me from wireless technology in our home in the past yet the results were initially helpful then inconsistent.  This time the GEOMACK from Spain reduced the intensity of the convulsions 50%.  That reduction gave me a tiny boost of strength that I needed to physically and mentally prepare for surgery.  My husband got some much needed sleep as well!  Could their be an electrical cause after all?  (See this blog for more anatomy and discussion.)

The morning of the surgery went as usual.  Convulsive episodes began shortly after opening my eyes and periodically as we prepared to leave the house.  Seizure zips ripped through my hungry and thirsty frame as my beloved drove us to the hospital.  We were still reeling from the large check we had to carry with us since the oral surgeon insisted on performing the extractions near a crash cart, I guess.  And after some prayers, many silly jokes and one last shake/rattle/and roll with placement of the IV in my arm, the time had come to let go and not look back.  We reviewed my situation with the anesthesiologist and oral surgeon, surgical tech, and several nurses.  They were not to abort the mission if I seized under anesthesia!  Just wait a moment and get the job done.

I’d like to say that I woke up in a calm, blissful state but that simply was not the case.  I became nauseous and pain management was a problem over the next day and one-half.  Oh well.  One thing was certain:  THERE WERE NO SEIZURES OR CONVULSIONS!   The “battery effect” of dissimilar metals in 2 adjacent crowns over root-canaled teeth WERE FRICKIN’ GONE!  No more tazoring of my brain would continue.  And hey, if there was hidden infection in the root-canaled teeth then the problems caused therein are now also “history.”  The hell is over.

My job now includes retraining my brain to relax when falling asleep instead of bracing for impact.  My job now includes remembering all of the relaxation techniques I used to train my patients in psychiatric hospitals to deal with anxiety.  I need to rework those memory pathways and feelings of impending doom that followed me, waited for me every night, every morning, every time when I was exposed to noxious stimuli, or even on the clothing or breath of my beloved anytime, anywhere.  Hey, no problemmo.  I am ready to live and the extended forecast is good!

Thank you and big hugs to those of you who have followed my story for any length of time,  You have been an important part of my lifeblood to go on when I could not.  Sometimes my husband could not be home with me and I was alone, feeling terrified mostly of even greater suffering and it came.  The worst episodes were never captured on YouTube videos because my warrior husband was needed to hold me tightly to keep me from greater harm instead of holding onto a camera.  Sometimes the Lord was silent even when I cried out to Him when breathless, facing death again and again when my breathing stopped.  When He did speak I gained the courage I needed to face the next trial.  In the end, death was not my greatest fear.  Dying without my Heavenly Husband was.

But you know what?  I made it through.  Steve made it through.  A new chapter in our lives is about to begin.  I’m going to take some time now and regroup.  I am very weak.  An infusion of my Jesus is needed.  The warmest embrace with my beloved must follow.  And really good food cannot be far behind.  After tomorrow the putty d’ jour will be history!  Yeah God!

Pureed Tri-Color Carrots, Cauliflower, Bacon, Ground Round, Potato Chips, Homemade Broth, and Sea Salt
Pureed Organic Tri-Color Carrots & Cauliflower, Bacon, Organic Beef & Potato Chips, Homemade Broth, and Sea Salt in the Recovery Room!

With love, JJ

But the Lord was my support. He also brought me out into a broad place; He delivered me because He delighted in me.  Psalm 18:18b-19

Cast your burden on the Lord and He shall sustain you; He shall never permit the righteous to be moved.  Psalm 55:22

UPDATE:  The holiday from convulsive episodes did not last, unfortunately.  There were many benefits from having these two infected teeth removed:  significantly less mouth pain, less congestion in the upper shoulder and neck, decreased TMJ symptoms, decreased auditory anomalies, reduced ringing in my ears, and more.  Then there was a miracle:  our insurance company covered most of the $10,000 bill.  Amazing!  :J

Keeping the faith!

When texting with a fellow sister in Christ today, I’m hoping that the Lord graciously encouraged her with these words.  If you are hurting in any way, I hope they encourage you too.  Jesus loves you!  JJ

We can do this my dear sister! Cling to that cross with your baby fingernails and hold on!

When facing death so many times when my breathing stopped I asked Him if this was the end?  How could I possibly go on?  I feared going to bed every night because the episodes were worse at night.  They hurt my frame.  They hurt Steve.  They hurt our marriage.  And one day the Lord spoke gently only the words that I would not die.  He made His presence known at my darkest points of personal hell.  Then things got worse.  And my measure of life became only the fact that my eyes were open!  With this I learned to live in the wonder of the moment and He sustained me with just enough grace to get to the next one . . .  Then after 3 years time, some answers and the beginning of restoration have come into view.  Whoa.

I am sad for your suffering!  I was hoping you had more relief by now.  I know God is showing up to do the things you cannot do alone in your weakened frame.  Reaching out to others when you have big needs?  And so much more.  Whoa.  Yeah God!

I pray He will speak to your heart today.  Like letting down our swords and shields and letting Him gird you gently with His truth.  And He “speaks” that truth of in so many ways doesn’t He? I know He loves you and cares for these needs, grieves for your suffering.

When someone asks me how I am doing I have often replied, “hanging tough.”  My brother Mike taught me a better answer, “keeping the faith.”  Yes indeed.    Love you, Julie

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