So much to bear

The weight of my world is heavy on my shoulders right now. To move forward (or to even make my way through the current burdens) seems too much to bear. I seek my Lord’s face, lie face down in front of His cross, and just hold on for dear life during the hellish parts. In fact, holding on, just trying to breathe was the most I could do yesterday afternoon.

The local oral surgery group that helped me in the past, finally decided to move up my appointment for a consultation. I need an infected tooth extracted ASAP. Once I found out that it could be contributing to the worst of my health issues, my focus sharpened on getting it outta there! But that is a tough goal to achieve when the world is shut down due to the coronavirus pandemic. Most dental and hospital services are shut down if deemed “non-essential.” The definition of “essential” seems to vary among various medical specialties, however. Three weeks went by after my need was identified; no one could help me anywhere in my state or the country unless I waited at least two months!

After an hour wait in the waiting room of the oral surgery practice, everyone equally spaced for social distancing and many persons donning some type of mask, I was led to a dark and cold dental suite. A metal tray table near me was covered with layers of sterile tools and surgical draping. The medical assistant had already screened me for COVID19 by taking my temperature, instructed me that a new panoramic xray would be needed because they couldn’t get my CD or thumb drive from my referring dentist to work right, uploaded the new pano, and begun to review the consent forms for a tooth extraction procedure. Say what? TODAY? This wasn’t just a consultation?

Five years ago another oral surgeon in this practice required that extraction of what would be discovered as 2 infected teeth, had to be done in a hospital setting. Dr. R didn’t want the liability and clinical risks of a seizure occurring in their outpatient office setting. We agreed and braced ourselves for a $10,000+ bill, out-of-pocket! Such is the nature of dental care when done in the outpatient department of a hospital these days. The procedure was successful and miraculously our medical insurance paid for everything! The drain on our household emergency fund was reimbursed. We were amazed! And many of my symptoms improved over the subsequent 6-8 months of healing. I also had fewer triggers of convulsive episodes as a result. That is, after one hell of an initial recovery process, with virtually NO PAIN MANAGEMENT due to medication side effects. That part was hell.

So flash forward to yesterday, when I knew that this new oral surgeon would probably need a reason to schedule the extraction sooner rather than later, if it couldn’t be done with a simple numbing procedure in their office. Some Nurse Practitioner thought it would be alright to do so even after reviewing my case on the phone a second time. Not! But I still knew that Dr. S would probably have to see a seizure to make this determination. I know. Every single type of healthcare provider that I have seen while battling serious illness over 8 years has not take me seriously until he or she sees a violent convulsive episode in-person. And even when the Practitioner does witness one, the clinical assessment of my condition varies widely. Would Dr. S believe me that jaw pain and an infection was in fact triggering seizures like they had in the past? I came into this appointment having had only 2 hours of sleep the night before, hampered by a 40+ minute episode in the middle of the night when unable to fall asleep. Just tap on my teeth buddy, I have a feeling that you will find what you are seeking.

Dr. S said that the new pano clearly showed evidence of infection. Then he examined and tapped on my teeth. The violent hell that ramped up thereafter prompted him to schedule an extraction in the hospital as soon as possible!

It all started with a little shaking then quickly ramped up into twisting/writhing movements of my torso, intermittent vocalization, head-banging, and desperate gasps for air. “Just breathe. Breathe in through your nose and out through your mouth,” was the broken record I heard from the voices around me like a thousand times before. I was able to blurt out not to touch me (for additional sensory stimuli makes the episodes worse) and that supplemental oxygen might help. They put an oxygen saturation monitor on one of my fingers and wrestled a larger cannula around my face. My eyes pulled shut and my photo-sensitivity kicked in from the uncovered window in front of the exam chair, burning through my eyelids. The Doc braced me from the right and had another staff person brace me from the left so that I wouldn’t fall off of the chair. My arms yanked inward to my chest in a flexion posture, typical of these episodes. My head rolled back then pulled forward again and again like dead weight on a pulley. Finally I was able to get enough respiration going to push out the words for someone to get my husband. “Have him bring the glutathione . . . . from a bag in our truck.”

Steve basically knows what to do to help me in these moments of crisis. But someone else putting a rescue remedy in my mouth for me usually won’t work well. If he misses and the liquid or pill or snack bar runs down my face then that light-touch sensation sends me into a more violent tailspin of seizing. I have to find a way to get my arms to work, to hold the medicine of sorts, and to get it into my mouth between waves of waking seizure attacks. It takes every bit of body scanning and mechanics, awareness of my surroundings despite the finding that my eyes won’t open, and numerous calculations to figure out how to get it done. It takes many failed attempts before success. Are my arms working again yet? Can I flex my trunk forward to put the TMJ dental appliance into my mouth since I can’t bring either hand to my face? We all gotta wait it out through my trial and error.

Initiation of movement worsens the episode at all points once it has started and even when finally nearing its resolution. If I employ whatever cognitive override I may have to grasp a bottle and squirt something in my mouth from my clenched fist slammed into my chest wall, there is often a price to pay even if I am successful. Initiation of active movement triggers another spike in the wretched involuntary posturing that follows. And it kills my neck! Then there’s the hemiparesis phenomenon: virtually always I either can’t move my arms, move my legs, or move some combination of either one. Trying to open my eyes too soon brings the sensation of glaring light that triggers a slam backwards again. The worst part is that I am awake the whole time this torture is occurring. Most people are unconscious during seizures. Not me. I am aware and feel and remember everything. And there is very little I can do to help myself. Guttural cries or grunts or fires of grief often explode from deep within me, sometimes yelling for the Lord’s mercy. There can be screams of terror. Tears drip from my eyes before most of these are over. The experience is a living hell. And they still happen virtually every day. For eight years!

The extra oxygen did nothing to help me. I wasn’t sure if it would help this time or not. There was a time in the early visits to the Emergency Room that pure oxygen calmed down the episode. Not today. The glutathione did reduce the velocity of the involuntary movements. The “waking seizure” transitioned to a pressured-type of shaking. Little breaks started where I could catch my breath and try to breathe in the O2 in from my nose as directed. But the episode wasn’t stopping yet. The area below my tooth was still stinging and I knew that the episode might not stop until the pain subsided. The tips of my toes and fingers burned. At home we had topical lidocaine, a numbing agent that my Craniomandibular Specialist in Florida had ordered in January. I asked for lidocaine and helped the nurse anesthetist figure out where tooth #19 was in my mouth. She didn’t know. The seizing slowed another notch. I struggled like an addict shooting up crack cocaine to switch out bite splints, hoping to take some pressure off of my jaw. Then suddenly, the hell was over. Eventually I was able to open my eyes. And all I could do was stare out there in front of me, or to nowhere, at nothing at all. Anyone think there is cranial nerve involvement in this serious illness? Mandibular branch of the trigeminal nerve? Yeah, me too.

The nurse needed consent forms signed for the tooth extraction to be scheduled in the hospital. Another 30 minutes later, I could move my arms and hands enough to manipulate a pen to sign my name. Over an over again, I worked hard to manipulate the pen. I had a little shaky spike. Eventually the papers got signed, I could sit at the edge of the chair, head to the bathroom for some supervised voiding, cautiously walk to the front desk, and leave the building as a beaten puppy. I was fried! And hungry!

I couldn’t wait to eat the food I had brought along with me while my hero, Steve, drove us to our next destination. I was faminshed. I had not had enough time to eat breakfast before the appointment at the oral surgeon’s office. Now there were more phone calls to make to set up my home healthcare that will begin this coming week. I needed to make arrangements for curbside pick-up with for essential and non-essential business we had to do before heading home. Life goes on and so do other aspects of my healthcare, my life. Steve had to get back home and back to work. Gratefully there were free plants in the mix as well. Maybe another time I can describe the score of free, cool-season flowers I acquired in exchange for a patch of yellow prickly pear cactus from our backyard . . .

No, it’s not all hell in my world. Yesterday there was much of it to bear though. Tomorrow will be better. The death of Jesus Christ on a Friday and His resurrection on a Sunday reminds me of this. One day, all suffering in this life will end including mine, including yours. Your sins can be forgiven, heart made whole, and hope restored Gentle Reader. Don’t bear suffering alone! I don’t. And I won’t no matter how much there is to bear. My Lord is the only reason I survive and in my spirit overcome the darkness of our fallen world to brain-dump here at 4:48 on a Saturday morning.

Again, Sunday is coming. Will you be there? :J

Not nicer but deeper

Signs of spring abound juxtaposing the promise of new life with the reality of death in this season of both green and black, this season of life altered by a rogue virus. How can we possibly take it all in?

The goodness that we can find in our shared humanity isn’t far off as neighbors serenade the streets with music. We put teddy bears in the front windows of our homes for the kids passing by at a safe distance or join masses of cars flashing emergency lights to support the healthcare workers laboring inside our local medical centers at night. Each gesture brings a smile, some warmth for a brief moment in time.

Conversely it seems that the fear of a silent killer has intensified the divisiveness, the viciousness in social and public media to levels not seen since caveman days. Our society has gone beyond simple disagreement to sarcasm and its true definition: to “tear flesh.” Hatred, really. It doesn’t matter to the masses that we are all in this together, that we are all at war against the same enemy. The process of dealing with COVID-19 will reveal the good and bad in each of us at some point. The stress is crushing in the weakness of our humanity. If you looked more closely I believe you could say that below the surface, we are all hurting from the loss of life as we once knew it.

I’ll never forget the 2 women joking about the newly coined term of “social distancing” in front of the organic produce section of our local grocery store as we waited our turns to step up and select a vegetable or two. That was only a month ago. Yesterday no one was joking in their combination of bare hands or gloves and masks, grasping a sanitized shopping cart, and standing 6 feet apart on the blue stickers marking the floor at the checkout line. The air was tense as I observed the cashier wearing only one latex-free glove, the gal bagging our wearing a re-usable cloth mask and no gloves, then me taking off one of my sweaty gloves to sign the screen of the credit card reader (before sanitizing that hand with a little bottle of same in our truck). This is nuts!

I submit to you that overall the COVID-19 Pandemic is not bringing out the best in people yet. I am glad and grateful to see the goodness here and there. I do believe that most of us in our hearts are somewhere between survival mode and beast mode. We are struggling in our own strength to establish some sort of normal routine while living in the chaos. That is simply not possible yet. How can we do so when in the back of our minds we are wondering if we or our loved ones will be the star of that leaked YouTube video of the patient dying alone in an ICU bed or worse, packed in a black bag in the refrigerated truck parked outside the freight entrance of the hospital? Yes, this is way beyond nuts!

Experts tell us that the world here in the United States will get worse before it gets better. But probably in each of our own private spaces and places, there will be some nice things that will happen. Some loving and meaningful moments will be in the mix. But we must ask ourselves if that is enough? Is it enough to just survive the pandemic of year 2020 with a few GIFs and memes from Facebook in our minds? Or conversely do we throw up our hands, succumb to addiction (including stuffing ourselves with food) and say if we die, we die? I mean really, how does one cope when the world is going increasingly mad?

You go deeper Gentle Reader. You go deeper than asking how or why or when or where or who or what. You go deeper than the comfort of your own bed (if your are blessed to have one) and kitchen full of food (if you are blessed to have one). You ask yourself what life will be like 2 months from now when your housemates can’t stand each other anymore or your employer had to close its business after all, when the government goes bankrupt or the earth groans with the tragedy that actually didn’t take us all out. You ask yourself about the value of your own life and the ones you love and further, the very meaning of life itself.

I pray that it is sooner than later Gentle Reader, that you will go beyond the darkness of days to go deeper still. For it is then that we both will know without any doubt that we were never alone in all of this mess. There is a purpose and a plan. We will find a peace that transcends the mess of this world. This is not of ourselves such that no man may boast. We simply are not strong enough. All along the way the God of the universe is watching, waiting, listening, grieving, loving, and ready to see us through no matter what happens. It is for His design and glory that we live. Say what? How can I say this? I found the answers, the truth in His Word. I found that the Lord ordained supreme testing within a horrific illness I endured and battled over the past 8 years. And through it all, there was meaning and purpose. I was never alone. He was always there with me whether I felt His presence or not. And always there was peace beyond the strife. I escaped death more times than the 9 lives of Morris the cat; COVID-19 doesn’t change a thing whether I live or die. My eternal life that transcends the strife of this world began a long time ago.

The world simply will not, no never satisfy the groaning, the longing of our hearts. That place is for Jesus Christ alone. Want to explore this topic further? Go right now to the book of John. Find a Bible. And dwell amongst the pillars of the King who loves you so! Do it now before it is too late. JJ

Some Passion for You

Passion stems from the Latin work pati, meaning “to suffer.” The stem pass comes from the word passive meaning “capable of suffering.” Pass was coined in the early 16th century to denote “the suffering of Christ on the cross.” English also acquired the word through the Old French word passion meaning “strength of feeling.” This has been transferred in our modern times to denote sexual attraction and anger.  (From this website.)

I was watching an interview of actor Jim Caviezel who portrayed Jesus Christ in Mel Gibson’s movie Passion of the Christ.  Jim has a powerful testimony of the physical trauma he endured during the making of that film.  The movie came out in 2004 when I was in the beginning stages of divorce after my former spouse left me.  I was devastated.  Also within that year my grandmother and youngest brother had died, I lost my home, I had to change churches to begin the healing process (distancing me from my support system), my mother was diagnosed with lung cancer and underwent a serious surgery out of State, I lost my job, and had to store my things in 5 places while I began the first of what would become 5 moves of residence.  One of these was after a condo fire which displaced me into a temporary apartment with only the clothes on my back for a time.  Talk about suffering!  Still this was nothing compared to what my Lord had suffered on the cross for my salvation.  But I tell you, I simply could not watch that movie during that time in my life.  I was too traumatized.  It would just be too painful on too many levels.

This week marks the 5-year anniversary of when I first started having wretched seizure attack episodes on a daily basis.  I had gotten sick with a biotoxin illness for 6 months before then when an “alternative” treatment modality triggered the onset of seizures.  (These continued today although gratefully the pattern is changing some again and this could become a good thing.)  The suffering with these often violent convulsions has been tremendous.  Never would I have imagined such a terrible, terrible illness.  (See them here.)  Even the tumultuous years around 2004 do not compare to what I have endured more recently.  Even those who agonized with me during the various aspects of the stress 13 years ago do not compare to what my beloved husband Steve has endured with me during this illness.  Suffering of this magnitude brings hell to earth for a part of every day.

There are other periods of time that I would characterize as suffering:  the incidents of abuse in my childhood.  Some were sexual, others physical beatings, and several involved satanic rituals.  All were profoundly damaging and required years of help, love, and the healing grace of our Lord, Jesus Christ to overcome.  The abuse kept my mind, body, and emotions trapped in various ways for decades affecting my ability to function as an adult woman.  Somehow I did find my way out when I found Jesus Christ as Lord and Savior; eventually the pain, the “suffering” largely went away.  Self-destructive habits and negative thought processes faded.  Forgiveness and healing took its place.  I became more whole, interestingly surging even now to a new level of peace as the seizure attacks lessen.  Suffering from abuse no longer troubles my spirit.

The Lord doesn’t waste anything in His plan for our lives.  After 2006, I got to experience a magnificent restoration from the “years the locusts had eaten.”  (Joel 2:25) For example, the insurance settlement from the condo fire (where I was renting an apartment) ended up paying for beautiful décor in a condo of my own where I could rebuild my life as a single woman.  Flash forward to more recently and I wrote here of the blessings that have come despite enduring a serious illness including meeting all of you through this blog!  And all that childhood sorrow gave me a compassion for others that has served me well caring for others for decades as an occupational therapist.  Despite my suffering, I am grateful that my Heavenly Father and Husband has allowed me to see His hand, His plan that has masterfully created goodness from the suffering He ultimately allowed for His glory.  I now believe it was all for my good too.

unyru paper, collage, art, wall, Romans 8:38, Jermiah 29:11 Christian, artist
Collage art wall mural in the hallway of my condo with a self portrait too.

And what about the more contemporary definition the word “passion?”  The connotation of emotional, physical, sexual energy?  Let’s just say there is much in my life now to be passionate about in having a wonderful husband (my “intended beloved”) who loves the Lord and me too.  Then there’s my love of growing things in the garden (from my mom) that has kept me moving forward on my worst of days in addition to my best of days.  I love digging in the dirt!  Perhaps most importantly is my passion to champion the calling of the Holy Spirit when He compels me to:  serve someone, encourage someone, love someone, share the hope found in Jesus Christ with someone.  When I hear the call of the Holy Spirit moving me in a particular direction, I move forward with a razor-sharp focus that consumes whatever energy and resources are available to me at that moment.  Whether it is in the middle of the night making my husband’s lunch for work the next day or baking cookies (despite a terrific headache) for that service dude who is having a really, really bad day.  Me and my Lord getter done!

This I have come to know:  that if the Lord calls, He empowers us to respond.  That is what passion is all about, good or bad.  And guess what?  He made the suffering, all of it, good for us on Easter morning.  How about if we keep this in mind the next time he calls?

JJ

Gyrations of health: a Testimony

If a cyanobacteria exposure in a reservoir creates the same biotoxin illness as mold exposure, then why did I not tolerate the Shoemaker protocol to recover from both?

Tis the gyrations of health, I guess, like a drone spinning out of control from the pond beyond to the one drowning in our own backyard.

If latent Lyme disease reared its ugly head but resisted treatment with 3 increasingly costly protocols over 5 years, then why do I keep barking up this fallen tree anyhoo?

Tis the juxtapose of stealth bugs who hide, change their DNA, become resistant or move from my big toe to deep within the brain raising havoc all the while.

If a chain of serious viral infections can hang their shingles on my weakened frame at Christmastime, then why does not 30 days of treatment make barely a dent in one of them, huh?

Tis the nature of complex illness when antibiotics awakens a sleeping class of infection, pushing me to a sideline call more spectacular than a Super Bowl play in overtime.

If heavy metal toxicity met its match with the best testing, detox protocol, and success, then why is it still possible that more mercury, lead, and maybe aluminum may linger undetected in me still?

Tis the nature of blood, urine, and hair sampling that only captures that which is circulating or secreting not the poisons imbedded in tissues only a needle in a haystack would find.

If I can gain 34 more diagnoses with one trip around the calendar trying to get well, then why would we even question that there’s a need for a new tune, a break, and yet more prayer?

Tis the nature of hopes dashed while waiting and seeing what may come (not wasting time asking “why” instead of professing “I will trust you Lord.  Show me how.  See me.  And love me through it too.”)

If when married in the past and health challenges that now look like child’s play came but crushed life as I knew it, then it would be many years later that my intended beloved would show me true love:  how true faith conquers all, overcomes.

Tis the nature of fake religion which fails when life gets hard.  A God-fearing man seeks the Lord.  A God-fearing woman does too and this will be our calling card when this chapter of our lives is through.

And if my writings, my research, the doctoring, trial-n-error, or treatments really worked for something good, then why the heck would I still be seizing each day with “the flu” and pain that has marked 5 years of disabling suffering?

Tis the mystery of bothering to recover, trusting in the Lord who has saved me from far worse knowing that one day we shall rejoice, you and me Gentle Reader, if we but hang in there a little longer with hope beyond the gyrations of this life.

I’m in.  How ’bout you?  JJ

 

So much to consider

So we come to a crossroads, my beloved and I

From where will we go from here to continue my care?

No cure hath cometh from a year of killer drugs within

Five years of tortuous suffering with costs beyond compare.

We don’t know why the trauma continues to this day

Whether it will continue or end?  There are no promises

That when we show up in this life that all will be grand

But shunting the yearn for heaven my dear, the treats beyond.

Today I am tired but stable, weak but reflective

Grateful for so much while I ponder theses woes . . .

My beloved is sweeter than honey

His warmth a comfort to my hol-ey bones

He loves me deeply still; I see it every day

And life’s sweetest:  love from this man I have come to know.

Alas I search the scripture and find that even Job

Needed to trust in the Lord not knowing why

His suffering exceeded the faith of his friends, his kin

When all was really a battle within the spiritual realm

Having very little to do with his past, to do with him.

So in the seasoning of the late missionary, Helen Roseveare

“Can you thank me for trusting you with this experience

Even if I never tell you why?” God asked of her in the midst of terror.

“He doesn’t have to tell us why,” she would learn

“But He often does in His gracious, loving mercy,” for sure.

So I will seek the perspective of the privilege

It is to be used in this life by the Lord almighty

Relinquish my frame to His plan and outrageous love

Then wait and see:  He is worthy.  My response:  humility.

JJ

God, sun breaking through clouds, sunrise, sunset, storm, hope, rays of sun, sunshine, clearing