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!

It tops the list

We all have times that define who we become:  turning points such as the day we got M-arried, came to C-hrist, experienced a T-raumatic event, W-itnessed the passing of someone we dearly loved, or maybe we I-nherited some money.  I have experienced all of these and some more than once!  I will leave you hanging on which one(s) have occurred more than twice!

Tonight I will publish the big “T” list for the most traumatic events I have experienced in 2 sub-categories as follows:

Emotional Trauma.  March 4, 2003:  The night my former spouse left me.

Physical Trauma.  December 18, 2016:  The afternoon a case of shingles took hold in my face.

Gratefully the gifts of time and good counsel have allowed the first one to fade over the past 14 years.  I have a wonderful husband now who loves me beautifully in my “intended beloved” Steve.  He has witnessed and endured the second big T with me two weeks ago.  I think we are both still in a bit of shock as I continue to recover.

I had just been diagnosed with shingles on Friday, December 16th in my doctor’s office.  (Shingles is a flare of chicken pox in adulthood triggered by severe stress.)  Dr. J prescribed an anti-viral medication and sent me off to the grocery store pharmacy to pick it up.  Within a day I started to itch and the pain in my right jaw was ramping up; the lesions on my face began to get bigger and blister.  Various remedies here at home were not making any impact.  I began increasing my dose of Ibuprofen to near-prescription levels to be able to sleep.  By Sunday I was holding the right side of my jaw and ear canal in agony and taking double the OTC dose of pain meds every 6-8 hours.  I thought that maybe I needed a chiropractic adjustment to treat the wrenching my neck from the daily seizure attack episodes.  However, the interim massage or stretching techniques were not working; heat or ice made everything much worse.  I sat in our sauna for awhile and had a rash by the time I was done.  What was going on?

Nothing really prepares you for the cruel, searing, unrelenting pain of shingles when it erupts in sensitive areas of the body!  I started to scream when the pain randomly pulsed up like a lightening bolt cutting through my jaw and ear.  I called our local Rapid Care Clinic and figured out how Steve and I would need to get there before it closed at 2:00 p.m. on a Sunday.  The internist who saw me marveled at the lesions that were now worsening both inside my mouth and on my face.  The rash was from the Valacyclovir (anti-viral).  He sent me to the hospital . . .

Even a crow bar might not have been enough to wrench my hand morphed into my face in a feeble attempt to control the pain.  Excruciating stages of waiting followed.  It would be EIGHT HOURS from my last pain medication at home before my first dose of Torodol in the ER (that did NOTHING, by the way!!!).  It would be an  additional FOUR HOURS before I would receive Dilaudid in my hospital room that brought relief and another day and one-half of nausea that broke through the Zofran administered to counter it.  Four liters of fluids ran through my veins over the next 3 days.  I held back portions of food on my bedside table to try and protect my stomach from the two new anti-viral medications, gabapentin, and prescription-strength Ibuprofen needed to manage my symptoms.  I slept 3 broken hours each night.  The foam ear plugs didn’t work.  HGTV got me through a drugged, constipated stupor.  I was so very sick.

I will never forget what happened in the tiny room in the ER where Steve and I landed that Sunday afternoon.  The room was so small that the gurney was positioned on an angle.  There was no call light and medical supplies were stuffed in open shelving within reach of each of us.  That’s not right!  A doctor eventually came in and started questioning me as if he had just met me in the hallway outside the gift shop.  “Did you not get report from the Rapid Care Clinic or internist who sent me here?” I blubbered.  “All of my allergies are in your computer system,” I tried to state while keeping some semblance of composure.  He left to go check as if to bow at the end of a chat at a wedding reception.  Unbelievable.

We tried to remain calm.  There was a lot of commotion outside our closed door from the activities and people moving about beyond it.  Hours were passing.  I had never had children before so the pain of birthing was not in my memory.  They do say that the pain of shingles is worse but I really do not know that personally.  Steve appeared numb with exhaustion.  We have both been through so much trauma over the past 5 years of my nightly seizure attacks, tens of thousands of dollars of medical expenses, lost holidays/events of life together, cancelled dreams, permanently altered sleep patterns, maddening chemical-avoidance activities, and existence from one crisis to the next but even so, we were not prepared for this night.

Then I completely came unglued.

Blood-curdling screams erupted from the depths of my soul.  Wails of grief were so deep that my entire body twisted and extended against the bed as heavy tears burned my scorched face and dampened the sheets, my clothes.  (I would end up wearing my sweats that way for the next 3 days.)  I could hold on no longer!!!  For a brief second I was able to glance at Steve as I gasped for air.  I never want to see that pained look on his face again as long as I live.  His fingers were stuffed into his ears to protect his hearing.  I was that loud!

Someone burst into the room to see what was wrong.  I could not speak, just screech!  It hurt my good ear and infected ear alike.  I could not stop except to push air into my lungs by thrusting out my chest wall.  Soon came the IV Toradol and it did nothing.  Back on my allergy list it went.  There was a chance that it would help this time.  It did not.

Still groveling, gasping, yelping in pain, someone eventually wheeled me out of that tiny room, onto a cold elevator, up a couple of stories, and into a room outside a noisy nursing station somewhere in that massive medical center.  Room 475.  Then Steve and I were alone.  Actually I don’t remember where he was.  I could not stop the yelps and hot tears as a rather disturbed-looking nursing assistant tried to help me to the bathroom around yet another angled hospital bed, infusion pump in-tow.  [Two weeks later I would learn a possible relationship between urinating and relief of seizure attacks as each relate to the issue of dehydration.  (See https://justjuliewrites.com/2017/01/03/hydration-is-key/ for more discussion on that topic.)]  More agonizing hours brought a nurse with another pain med on my allergy list but I did not care.  The torture finally began to come down some for the first time in half a day.

What remained was a shell of a man and his wife who kissed goodnight in that darkened hospital room.  The acute phase of the Physical Trauma was coming to a close as the chronic phase of shingles was to begin for me:  now officially labeled a “medically complex patient.”  There have also been complications of severe constipation, mouth sores that spread to the inside of my mouth and throat OPPOSITE the herpes simplex inside-and-herpes zoster outside on the right side of my face.  The body rash on my torso and forearms that accompanied the Valcyclovir spread to my groin on the right when the anti-viral medication was changed to Famciclovir.  Eventually the Hospitalist/Physician’s Assistant (because I never was allowed to see an Infectious Disease Doctor as promised you see) agreed to let me try Acyclovir with an OTC remedy just hours before discharge from the hospital.  I am still on it and tolerating it.  Whew.  Most importantly, the new combinations of medications controlled the worst of the facial pain.  Two weeks later I have started to sleep more hours in a row!  Woot!  Woot!

Interestingly, I was spared virtually any neck or back pain during the entire ordeal.  I had been in the ER earlier in December with intractable back pain.  Good golly!  Hydration and the use of new antibiotics for the treatment of Lyme disease probably played a role in both the flare and alleviation of both events.  Go figure.  Or maybe it was those simple back exercises I had started in the middle of the night before going to bed that did the trick?  Who knows?  I am grateful to the Lord for some sparing during this crisis, these crises.

The Lord is like that you know.  While he promises there will be trials for Christians during our lives, he also promises that they will have purpose and meaning in His plan for our lives.  There will be grace and goodness along the way (ie. HGTV hospital hangover!).  Jesus Christ grieves over our suffering and knows it too from His beatings, stabbing, death on a cross.  I will never know the amount of Physical Trauma that He willingly endured for me, for us when He died in our place for our sins.  And one of His own, Job, endured much more with tragic losses and boils over his entire body (not just his mouth and face), before the Lord blessed him immeasurably, restored his life anew.  After the Emotional Trauma noted above from 2003, I got to experience this kind of blessing.  That gives me hope with the more recent Physical Trauma.  Knowing all of this is helping me to rebuild, heal, go on from December 18, 2016.

Gentle Reader:  to whom will you turn when your time of testing comes?  I hope and pray that you will turn to the person of Jesus Christ:  our Redeemer Who makes all things new, all things right, all things good.  Even in the worst case scenarios of life, we won’t be suffering forever you know.  Our pain will not be wasted.  How about if we spend our lives worshipping the Lord together?

My God is Jesus Christ.  I can’t think of a better Person to place at the top the list of who I want to spend eternity with when the time comes.  It might even be soon ya know . . . JJ