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

Our God Reigns!

Seeing this sweet perching of morning doves is such a mixed blessing this morning.  They are able to sit there because yesterday I was able to cut down the massive out branching of a clematis from lower on the trellis.  Also washed the flagstone patio of dirt and some algae.  I should have worn a mask for both projects.  Acute sickness and violent convulsive episodes followed within the hour and at the beginning of a sweet Skype call with my hubby’s son and family.  So sad.
However, the experience was diagnostic in that I am dealing with biotoxin illness now more than anything else.  Also I am tolerating targeted treatments for this for the first time in 4 of these 5 1/2 years of illness.  Lord willing, I am going to get well!
Gentle Reader, let the morning doves portray the hope that I have each new day in my Lord and Savior,  Jesus Christ.  No matter what may come, our God reigns!  Very fitting the week before Easter don’t you think?

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

Easter Then and Now

Psalm 130

A song of ascents.

Out of the depths I cry to you, Lord;
    Lord, hear my voice.
Let your ears be attentive
    to my cry for mercy.

If you, Lord, kept a record of sins,
    Lord, who could stand?
But with you there is forgiveness,
    so that we can, with reverence, serve you.

I wait for the Lord, my whole being waits,
    and in his word I put my hope.
I wait for the Lord
    more than watchmen wait for the morning,
    more than watchmen wait for the morning.

Israel, put your hope in the Lord,
    for with the Lord is unfailing love
    and with him is full redemption.
He himself will redeem Israel
    from all their sins.

Indeed He did redeem the nation of Israel as well as those of us adopted as sons, daughters into the nation of Israel.  When we stress about the sufferings of our days we can remember that the Lord is with us, redeems us, and will come again in glory for us all because of what happened one Easter morning long ago . . . .

These words encourage me during the most wretched of nights, which come every night.  These words encourage me as I witness the life that has drained out of my brother’s body since his stroke this past weekend.  These words encourage me as I ponder all of the loss and heartache during my half-century on this earth.  These words encourage me as I see His grace and mercy in the loving eyes, the comforting touch of my intended beloved who loves me so.  These Words are the Living God made real in my heart;  transcending this life and drawing me to my life everlasting with my Savior.  Because of Him I can see the blessings around me which hint at the life, the hope beyond.

No matter where you are or what life is handing you, Gentle Reader, be assured that His love extends to you too.  Easter Sunday is a celebration of the Lord’s perfect love.  He came from the utopia that is heaven to live as a pauper, suffer a tortuous death, and returned in glory when no one was expecting it.  We would not and can not do what He did for us.  And as we believe in the living sacrifice of the Lord Jesus Christ, we are redeemed.  Sorrow is replaced with joy from deep within our hearts.  All things are made new.  While my “outer man” is wasting away, my spirit is renewed day by day and will continue forevermore.

I look forward to the part of this journey beyond this life.  In the meantime it is my honor to say to you:  Happy Easter Gentle Reader.  With love, Just Julie

Jesus is for the Wounded

In the wee hours of Christmas morning, it is.

My body isn’t happy and my heart feels a little smaller than usual.

I wonder when this or that will change:  when the prayers will be answered?

Sadly, some did not say hello when I made it to church for the first time in a month.

Crying could be in the cards tonight, or at least a little pouting.  And what would that accomplish anyways?

I have so much goodness in my life, outside of this illness and its related difficulties.  About these I have written time and time again.

Why is it so easy to forget the blessings?  The roller coaster of life when it gets complicated too easily pushes my focus off of what is most important again and again.

Put the robe back on, take it off, no put it back on again as the sweat episode comes and goes; am I hungry or is it low grade nausea this time?  Oh yeah, the tic attacks have started again.

There is no end to this kind of thinking in my own strength.  I go on about it here only to illustrate that even as a believer in Jesus Christ, I am tempted, taunted by the darkness of this world.  Perhaps the difference between me and someone who does not believe will be what happens next.  Others may attempt to “pull themselves up by their bootstraps” and cheer up with positive self talk.  Still more will use a substance or dark distraction to erase the reality that can be so difficult to face.  Those comforts will be temporary and fail to something else that must replace it eventually.  Well this Christmas morning, these will not be me.  I will turn somewhere else.

But wait, can a baby born in a filthy village to a teenage girl and out of wedlock possibly comfort me in my anguish?  Even if He spoke wise words, did countless miracles, and 500 people testified that he rose from the dead, does that have anything to do with me tonight?  What if His life, death, and resurrection were perfectly predicted 500 or so years earlier without the benefit of the internet, does that mean anything for me or for you either?  And if He was part of God, the three persons of the one entity that is “God,” does that mean that He had anything to do with me being created?  So if He did create me, did He have really some purpose or plan for my life that included allowing me to get Lyme Disease?

Guess what?  The answers are yes.  Jesus is for the “wounded.”  Jesus is for this wounded woman who doesn’t feel so hot.  Jesus is for those who do good and those who do not.   Jesus is for those who think they are good but can never really be good enough because of our shared human condition:  we are all flawed by sin.  Jesus is for the sinner and those affected by sin in this fallen, imperfect world.  Jesus is the answer now and always.  And when I lift my eyes from my limited life and fix them on He Who is infinite, seek His forgiveness, claim that He is Lord, my eternal life comes into view.  This trial of illness will give way to an eternity in heaven with Him:  and there will be no more pain, weeping, or sorrow.  Yeah God!  How do I know this?  He promised it in His Word!

In the beginning was the Word, and the Word was with God, and the Word was God. He was with God in the beginning. Through him all things were made; without him nothing was made that has been made. In him was life, and that life was the light of all mankind. (John 1:1-3)

The answers are all in the Bible and the Bible is God, one and the same.  How does that work?  Finding the answer to that begins in a relationship with Jesus Christ, the Creator of all people, places, things, events, and spiritual entities.    Some go to His Word first.  Some cry out to Him before realizing Who is out there listening and waiting for them with perfect love.  Some find Him through a person who knows Him and draws a bridge to the heart of Christ by his or her actions, tenderness, words.  In the end, we can all find Him if we but seek Him.  Don’t stop with that spiritual friend or influence either.  He, she, or it will fail us at some point.  Trust God to be perfect; just love people (spoken first by my former Pastor, Bill Hybels).  Jesus will not, never, ever fail us.  Jesus is for the wounded.  He “knows” the cries of our hearts as He was also wounded physically, mentally, emotionally, socially, and spiritually too.  He does care about our sorrows.  He came to save us from the consequences of the sin of this world.   If all this wasn’t true, He would have never left the heaven realms to be born into this world only to die a tortuous death on a cross.  Would you leave paradise for me?  Er, no.

Tonight my heart is transformed by the renewing of my mind (Romans 12:2).  Thank you Jesus for coming to save me (Luke 19:10).  Thank you for watching over me (Psalm121:5) and ensuring that the trials will not be wasted (Jeremiah 29:11).  Thank you for caring about me (1 Peter 5:7) and taking care of my true needs (Luke 12:22-30).  Thank you for Your gift of salvation and eternity with You (John 3:16).  One day I know that I will be well, whole, and rejoicing in Your presence!  (Psalm 30)

Merry Christmas indeed.