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

It's a Mad Mad Mad World NOT!

Two million or more people moved from wandering in the desert for some 40 years to a dedicated process of preparing to realize their mission, their dreams. Virtually every need had been met over 4 decades, every action guided by the God of the universe that led them there, and all transpired with displays of majestic power to encourage them along the way. They were free after years and years of harsh slavery, multiplied fruitfully, and were about to receive all that was promised to them. What more could the children of Israel have wanted? In their own minds, much more. They griped, built golden images to worship, and failed to heed their leaders over and over again. Many were punished and died as a result; many others just followed along while some questioned where was God? Gee, these people would make “good” Americans right now!

We gripe when our needs are not met within tiny frames of time. We worship people, places, and things instead of the Lord our God. We fail to respect the very leaders the Lord ordains for our lives whether it be our pastor or the President of the United States then wonder why we personally don’t feel respected either. We resist the natural consequences of our actions, fight for some lofty goal of social justice that will never fully arrive in this fallen world, and in doing so push ourselves further away from the God of mercy, true justice, grace, love, and peace. It’s a mad, mad, mad world right now. And the more we strive in our own strength, the more we will squelch our lives of the gifts of this unique time in human history. We are at war with an enemy more “unseen” than the (.3) micron coronavirus-19. Our enemy is our very own pride. A pride that separates us from God and each other, more than “social distancing” ever will.

I live in the heartland of the United States where hard work used to pay off. Whether you went to college or worked your way up the ladder of a manufacturing plant, worked in the trades, or built a small business, you could feed your face and that of your family if you just worked hard. No matter what life threw at you, you were going to be o.k. eventually. Eventually I would come to know my own work ethic as a virtue instilled by my Lord and Savior, Jesus Christ, who gave me the skills I would need to navigate life until I found a personal relationship with Him. Thereafter, my strength would not be enough to survive: the tests and trials were too great to overcome them on my own. And by seeking His face, my Lord sustained me, provided for me, grew me into the woman that I am today. Often I don’t feel these gifts of mercy, true justice, grace, love, and peace. More importantly, I know each are there all of the time no matter what else is going on.

I’ve had a rough go of things again lately. The serious illness that I endure has only become more complicated with new thyroid issues, new dental infections that need specialized care. The latter simply cannot be addressed for weeks because of the quarantine recommendations of our government (and governments around the world). There is very little that me and my beloved can do about the need to wait for medical care, even though this type of infection is known to worsen a person’s health. I also need to find a new clinic in our smaller town to provide the infusions that I receive twice per month; they have helped keep me out of the emergency room for over a year. But only essential and emergency care are now provided at virtually all medical facilities that are preparing for the pandemic. I understand these needs. I really don’t know if several hours per day of convulsive episodes qualify for essential and emergency care when no one has figured out how to treat or stop them yet. Specialized dental care twice in the past made a BIG DIFFERENCE, however. What shall we do?

I know that the Lord sees and grieves my suffering. I know that the Lord hears and grieves the suffering of people sick with this new virus and who are afraid of all the effects it has had on our society to date. I know He hears the cries of His children whether we have professed love for Him or not. You know that we are isolated and hurting. We do need you now. We are like your children of Israel wandering in the desert, needing to see the cloud over the tabernacle by day to know that you are near and what to do. With the presence of so much evil, the consequences of living in a fallen world, the events that puzzle us but you mysteriously have ordained, the leaders over us who shun you, and the tearing apart of these once United States of America, WE NEED YOU NOW. Might we catch a glimpse of Your fire, Your glory to help us, to help me carry on this night?

In the meantime Gentle Reader, please do take care of yourself and your loved ones. Here is my prayer for you as you seek the desires of your own heart. I submit to you that you will find everything you want and need in the person of Jesus Christ.

Thank you for being here with me. Godspeed one and all, JJ

From Wondrous Works Shop on Etsy

Too many directions are no matter to Him

When the movement forward becomes murky from the treatment that sent me sideways

When the latest result became a scare not for cancer but still not not quell my burning question

When the past perks up and says hello, by the way, can you spend some time over here with me?

When the fog settles all around you, nightmares rob your rest, and things look worse but they really are not

You run to Jesus my friend.

Where did the money go when a gift seemed like it would settle all accounts again and again?

Where do you turn for comfort when isolation has become your friend and this is your normal normal?

Where do the roads lead that seem to have no arrival of merit in space, of substance, in meaning?

Where does the time go when it is no longer measured by the hour but the task of survival sun up to sundown?

It all goes to Jesus my friend.

Why do prayers seem to go no where when surrendered by obedience yet are tethered with strands of the unseen?

Why must suffering continue ad nauseum, day without end, manifesting in new ways over and over again?

Why didn’t I have a happy childhood such that my years reinforced it rather than set the little one inside free?

Why does the Lord delay in making it right for those who groan worse than I ever will?

Because He is Lord my friend.

What a day it will be when we know the answers we seek, when the glory is replete for all to see

What a treasure we will behold when the whys matter less where we put them and there’s perfect peace

What am I doing pining for that day to come if I can choose to dwell in His goodness now?

What witness will I leave until my own days have their end, my talents can no longer shine?

For He’s beyond what you see my friend.

Start at the point of exasperation

When you reach the end of your rope then a new one must come forth

‘Cause everyone needs a hand to hold onto sometimes.

When all you can see is a dark web of experience, a broken road underfoot

Then we must cling to a crossbar strong enough to last forever.

When your body is broken, unreliable, and shaking with ravages of illness

There is no reason not to grab a hold of something eternal, transcendent, permanent, sublime.

When the pain begins as your eyes open and close each day, each night

Trust that these are a consequence of our fallen world, not your curse tender child.

When hopes get dashed over and over and over and over again

Re-examine what you are hoping for . . . the journey is alas, laced with gold.

When “challenges” plague you that would dwarf the average soul next door

Walk your own path with eyes fixed on your Maker Who is holding your heart.

When all hope is gone it is actually the perfect time Gentle Reader

To cling to our risen Christ, borne from an old rugged Cross, waiting in earnest to love you through it all.

When one day the suffering ends and your exasperation is but ashes on the dirty ground

Know that to finish well, not pretty or neat, is its own just reward. We’ve got this. He’s got us. And all will be made well.

Isaiah, 41:13, Lord holding us, take heart, trials, illness, disease, suffering, tragedy, Christian, Jesus, hope, enduring, reward

One more time

A new specialist, a new gathering of papers

This is getting old already . . . not to mention the seizure attacks around 11:00 pm last night. Or is it still tonight? I digress.

A different role, a place all too familiar

As the rest of our lives carry on with big news: hubby passed his FAA oral and flight exams! Just like that I am the wife of a pilot, again!

Alas the doldrums of daily routines still carry on

Finally getting to work in my own garden late tonight after devoting much of this past season to a community park and much of this weekend recovering from another setback, ugh. The blackberries are no more. Elderberries are up next!

It was 8 years ago that I got sick just 5 days after buying my first truck

Now it’s a few weeks after an upgrade in same . . . does this mean that I will get well and drive off with my beloved into the sunset? Oh how I can dream, right? That we did the right thing too.

One more time things come around again but really are not the same

For we can never go back only forward as each breath moves us on. I guess we want to be who we are now with the romanticized memories of what we once knew: the fullness of our present with the innocence and perhaps mistakes erased from our past? Yeah, just let it go.

Look to our Lord and His return to make things alright my Gentle Friend

He will return in glory, in judgement, in power, and the makings of everything better forever good. The best part: TIME will no longer be our measure but only to dwell . . . lain in the rapture of ultimate love for always.

Sounds wonderful to me. Do you know Him too? Oh I pray that you do and you will be there with me when the stuff of life moves on for good. May this music minister to your soul as we wander towards our heavenly home. JJ