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.

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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

 

 

Treatment Update

OC, OC2, outrigger canoe, tandem, kayak, canoe, 2 man, Hawaiin, boat, Huki, canoeing, kayaking, together, marriage, paddling

It’s time for a yearly brain dump, hopefully keeping my heart in the right place (2 Corinthians 4:20) as I do so!

The last Treatment Update was quite bleak and posted when bedridden most days of the week.  I am grateful to report that it is no longer true!  As I described briefly in the About Julie page accessed in the side bar of this website, in January of 2016 I did proceed with the treatment of neuro-Lyme disease with 3x/weekly IV infusions of Rocephin (aka ceftriaxone), initially administered daily for 2 weeks.  Insurance stopped paying for the treatment after the first 28 days so I quickly transitioned to home infusions via a home health agency.  My time has been consumed managing the medications, supplies, scheduling, set-up/laundry tasks, and more required in having these and other treatments right here in our living room.  I also started full spectrum infrared sauna treatments 1-2 times per week.  The ongoing expense is tremendous and frankly has depleted most of our available resources.

But has it helped?  Yes:  I am doing better than I noted on November 11, 2015.  Except for a recent increase in symptoms (suggesting treatment resistance and a need for a change in medications), I am no longer having convulsive episodes 2 to 5 hours per day with one day exceeding 12 hours about every 2 weeks.  I am no longer bedridden most days of the week.  Most weeks I can get out for essential errands such as grocery shopping and gratefully I was able to paddle our outrigger canoe or more stable kayak 5 times this past year.  I praise the Lord for this progress!  My reactivity to noxious stimuli and mold has diminished about 30% allowing me to participate in a social function about one time per month without a marked increase in symptoms.  I attribute a good part of this progress to my work with brilliant naturopathic physician and genetic coach, Dr. John Catanzaro, of Health Coach 7.  There is more work to do however.  Progress remains slow.

After much struggle, prayer, and perhaps a leading of the Holy Spirit, I consulted with my Lyme Literate Medical Doctor (LLMD) earlier this week regarding a change in my treatment plan.  He has decided to change my medication to a combination of IV Rocephin/Zithromycin regime for Bartonella:  a co-infection that often accompanies borrelia burgdorferi (which is the primary bacteria of Lyme disease).  Bartonella is often associated with seizures, peripheral neuropathy and some lesser symptoms that are a part of my clinical picture.  Oral antibiotics of minocycline and Plaquenil may follow; it is common to use multiple antibiotics currently for Lyme disease when chronic with neurological complications.  There are ongoing supplements for treating biofilms (ie. the mucous membranes in which the organisms hide), detoxification, and nutritional goals as well.  The new treatment plan begins tomorrow . . .

I am required to have the first dose of the new medication administered in a medical facility before it can be administered by my infusion nurse in home health care.  So tomorrow I will re-visit the outpatient clinic of our local hospital where this phase of treatment began earlier.  I have come a long way since then!

Starting an IV or accessing my power port used to trigger up to 20 minutes of violent convulsive episodes every single time!  Sometimes I had to be accessed in more than one peripheral site due to the collapsing of my veins, hitting the valve of a blood vessel, or the pain/severity of the procedure.  The started isolating me in a private room due to the concurrent involuntary screaming episodes!  That is no longer the case.  Also, the entire infusion appointment used to require me to be at the hospital up to SIX HOURS before I was stable enough to walk out the door.  The nurses in the outpatient clinic left at 5:00 p.m. so they would transition my care to the staff who worked until 8:00 p.m. so I could sit alone in the quiet, deserted treatment rooms until the post-treatment episodes resolved.  Again, this is no longer as severe.  I do miss watching the remodeling shows on HGTV during the treatments, however.  We don’t have cable TV at home!

The journey has been long and difficult:  October 11th marked 5 years since I got sick with viral hepatitis after kayaking in the Cedarville Reservoir near our home and November 20th marks 5 years since the first seizure attack episode.  I have cried many grievous tears for so many different experiences of loss and incredible suffering.  There have been 3 minor surgeries with only 1-2 days of pain medication each time; the number of convulsive episodes is in the thousands.  I have now had counseling to cope with the trauma of this extended illness and to prepare me for the day when I will recover, return to life.  By the grace of God I have been able to complete the continuing education credits needed to keep my occupational therapy license active although I have not been able to work since February of 2012.  My husband and I have faced unbelievable stress, the depths of heartache together.  And even so, we are hopeful that someday I will recover fully.

Our Lord, Jesus Christ, has stated that those who believe in Him will have strife in this world but to not lose heart:  He has overcome the world (John 16:33).  He has been the strength that both Steve and I have needed to endure and overcome the worst hours of torment (Psalm 73:26).  He sent His son so that we would not die in our sins of the consequences of living in a sinful, fallen world but have everlasting life (John 3:36).

This means that my life will go on beyond these struggles, this suffering that I have endured and one day be with Him without the tears of this whole ordeal (Revelation 21:4).  That special kind of joy and peace shining in my heart even now will blossom into all joy and dancing as I trust in my Lord and Savior through it all (Deuteronomy 31:8).  I have cried out to Him on my bed of sickness (Psalm 41:3) and He has led me by His Holy Spirit time and time again (Mark 13:11) as He did the disciples before there time of unimaginable persecution.  My suffering, our suffering pales in comparison to that which persecuted Christians endure every day for their faith.

Thank you Lord for helping me and Steve to endure this illness.  We are encouraged for my progress and sense that it has not been wasted:  I raise this testimony up to you that Your glory may be revealed in our lives.  (Romans 8:18)  To You alone be the glory.  Please bless the Gentle Reader reading this today.  Thank you for loving us and bringing us together (1 Corinthians 5:4).  In the name of Jesus Christ I pray.  Amen.

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