Another Direction Has Begun

In this series of 1, 2, 3, and now this 4th blog, I share the pain and agony, arduous process of desperately trying to find hope through yet another medical crossroad. The discovery then extraction of an infected tooth was akin to placing an entire 8 years of battling a serious illness into a 2-month window of broken shards of glass. The infection was discovered on March 16th and the first surgery consult on April 11th. The second surgery consult resulted in the surgical procedure on the same day of April 22nd. Two treatments with IV ozone BEFORE the extraction showed promise to end my worst symptom of convulsive episodes however the gains lasted 3 and 2 days, respectively. Then there were horrible complications after the tooth was extracted. The 3rd treatment with IV ozone yielded 4 days of reprieve and a considerable reduction in pain and inflammation of the gum tissue below tooth #19. We are now optimistic for what the 4th treatment will bring later today. I have had more better days in a row after the 4th infusion than in the past, well, very very long time!

It really looks promising that another direction towards healing has begun. It really looks like the extraction of two other infected teeth in 2015 then the craniomandibular treatments in 2018 are related to the current dental issues: they all relate to the innervation and bio-mechanics of the trigeminal nerve complex, particularly on the left side of my face. I suspect that there may be a vestibulochoclear component as well since certain noxious sounds can trigger a neurological event. Infection leads to inflammation; suboccipital constriction from the trauma of repeated seizure attacks clamps down on those inflamed nerves. Ongoing inflammation of the cranial nerves, including the vagus nerve, keeps me on edge and from getting well. The visit in Indianapolis tomorrow will include an osteopathic evaluation and treatment in addition to 10-pass IV ozone. Tis time for my entire cranio-sacral rhythm-and-function to calm the heck down, get straight, and fly right!

Did I tell you about the garden bed we were able to put together this past weekend? My body hurt like heck yet my spirits were lifted as I pursued one of my life’s passions: all things gardening. How poetic for me to be planting a new garden bed in the spring of this year, just when my body appears to be springing to new life? God is so good, Gentle Reader. He does sprinkle His goodness here and there even on our worst of days. And this past week we had a down-pouring of it, literally! The day after Steve and I pushed to get all of our veggie beds ready for planting, the heavens opened up with a day of soaking rainstorms. Like washing everything clean. Like nourishing the dirt for the newness of life to follow. Like paving the way to bloom where one is planted . . .

I’m good with all of that for sure. JJ

Another Direction, Wannabe

Two weeks, 6 Dental considerations, 10 prescription medications, numerous rescue remedies and supplements later, the complete resolution of a dental procedure remains in the distance! Perhaps you know the story here and here where I suffered with anguish then crawled my way into renewed hope with the extraction of an infected tooth. Yes, the tooth is out. And no, I am not convinced that the infection is resolved. Some goo came out 3 days ago and the gum is still somewhat inflamed. Pain is not yet resolved. How can inflammation go down when there is goo? No one seems to believe me that this nightmare is not yet over, that there is more that can be done to help me.

The struggle continues this night with a less-clear course of action from here. Dr. L, the oral surgeon, says everything is normal and won’t see me until a month from my call last week. Dr. K, the referring dentist who diagnosed me, says the medications prescribed are “strong,” what else do I need? Yeah, I agree they are strong and the side effects created 2 new symptoms! I don’t need stronger. I need a modification in my treatment plan! Dr. J, my medical Doc, says it’s healing epithelial cells that oozed out; use some anti-microbials topically. Already on it sir but one of them has inflamed my gums so I had to discontinue it. Oh and the antibiotic tore up my esophagus so I had to discontinue it too. Dr. R, the Biologic Dentist out of town, still won’t see me in this COVID-19 pandemic even though he is the one who has the procedures and expertise to clean up this mess. Then there is Dr. B: the one whose office WILL treat me with IV Ozone this week because hey, I am willing to pay for it. So it is to the office of Dr. B we will go for a systemic treatment of infection and inflammation. Lord willing, I am hoping it helps!

Lots of tears have drained from my face these past few days. I went 8 days with nary a convulsive episode then they returned as my intolerance to pain medication of any type progressed. I went off of icing 24/7 only to return to this treatment so I can sleep at night; it seems to reduce the risk for seizure attacks as well. But make no mistake: the cranial nerve complex in my face, predominantly the trigeminal nerve (teeth) and vestibulocochlear nerve (ears) on the left side are still inflamed. A sharp banging sound of my hubby pounding a board while putting together a raised bed triggered all matter of hell breaking loose! It was all I could do to slam myself down on the sectional before the episode of involuntary shaking, gutteral screams, flexion posturing, leg posturing then flopping, writhing, and finally weeping in exasperation. I was helpless. And I am really spent after years and years and years of this hell.

Somebody please figure out how to calm down these nerves in my face, k? Can’t some dental, medical or otherwise knowledgeable person figure out how to fix it? Will the Great Physician speak healing into my life soon? I know that healing will take time from the second tooth extraction procedure from hell. (The first was in 2015 with extraction of 2 infected teeth and virtually NO PAIN COVERAGE after the first day! It was just too much to bear.) The trauma of these repeated incidences of convulsive episodes, complicated/painful medical procedures, and waning compassion from the medical community create a type of Post Traumatic Stress Disorder. Each new procedure brings grief and tears as I earnestly try to work through issues of appropriate pain management and recommended treatments that my body ends up not tolerating. IT IS NOT MY FAULT THAT I CAN’T FOLLOW YOUR TEXTBOOK PROCEDURES PEOPLE!!! Welcome to chronic illness! Even when I do the work of researching everything and writing down what works for me, they really don’t care much past the initial service or consult. Dr. L changed one med then prescribed what Dr. L prescribes. ISN’T THIS PART OF YOUR JOB PEOPLE!!!

Looks to me like there is a subset of Docs within any area of practice that really doesn’t like a smart, engaged, researched female patient who is really trying to make your job easier. When I bring a list of questions and show it to you it’s because I am scared and don’t want any further harm than the illness or the potential procedure otherwise might bring. I am trying to make things easier on BOTH OF US. Please listen to me. Please bring your best to our appointment as I will too; I have taken hours and hours to prepare already. I am scared; please be nice to me. Please follow-up with me and allow me to participate in my care. I want to be YOUR BEST PATIENT EVER! If we are successful together then know that I will write your praises everywhere with a clear and compelling testimonial. Isn’t that worth something to you?

I wannabe well. I realize that I might not get to be well. In the meantime I hope at least to have some good moments beyond the medical crap that dominates my life. I fight for moments of normalcy every day despite chronic pain and numerous medical problems. It might be too much to ask for the Docs to want something bigger for me beyond the procedure he or she is rendering. I get it. You have lots of patients and a practice to run and can’t get bogged down with one more problem to solve. Well just maybe this is why you got into the dental or medical field to begin with some years back? Saving lives? Bringing cures? Helping people feel better? Something more than money and prestige must have brought you into one of the most respected professional titles on earth. You can do it Dr. L, Dr. K, Dr. J, Dr. R, and Dr. B. Let’s see you try a little harder for me.

In the meantime I will rest in the arms of Dr. GP, the king of surgery of the heart, mind, and spirit. One day I know that I will be whole again in Your presence. Oh dear Jesus, is this all there is this side of heaven? I’m just so very broken. Thank you for listening. Thank you for your provision in my life including the most incredible helpmate and love on earth for me in Steve. Thank you for the ability today to make a nice meal for us despite the pain and problems. Thank you for protecting us from the virus that is wreaking havoc on our world. Just thank you. JJ

Spring brings the promise of newness of life. It just does. May it do so for you too Gentle Reader.

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!

Moving forward with the next big thing

Sure is humbling sharing the nitty gritty of an ugly illness with the world.  Yet I would not be a good steward of the experiences the Lord has allowed in my life for His purposes if I hid them in shame.  So with courage and trust that this will be used for good someday, I share with you my newest video:

Please consider helping us out with our campaign covering us in prayer as we embark on this new treatment adventure for me.   We are hopeful again!

For more details on this amazing story, check out the posts below from this past week.  Thank you to all who have participated already.  We are humbled and exceedingly grateful!  🙂

And Godspeed Gentle Reader.  I appreciate you so!  JJ

The Next Big Thing

Pursuing the Next Big Thing

Julie’s Neuro Treatment

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