I wait on thee

The needs are placed in the hands that be

My Lord in the lead guiding him, guiding me.

Appointments are scheduled, travel plans now made

Funds graciously coming in from the recent campaign.

I am humbled and anxious and weary and weak

Not knowing which way to turn or what to speak.

We must prepare now and pack as the time to leave nears

So much is there to do, to organize, coordinate, make some repairs.

If it be so that I will sell some things to help this lofty cause

To obtain the treatment that will heal my nerves and my jaw.

Three episodes today, when eating lunch then trying to make dinner

So I pureed my meal and with lots of yummy butter; it was a winner.

It’s too late to cry sans the stains have stung my cheeks and my clothes

I wonder if we will ever get answers from the One Who already knows?

Regardless I will forever choose to rest in the arms of my King

He brought me here, promised deliverance, so I trust Him with everything.

trust in the Lord, faith, Proverbs, 3, 5-6, scripture, Bible, verse, trust, how it plays out, daily life

Pursuing The Next Big Thing

Well I gave a detailed rationale in a recent post for me pursuing TMJ/TMD treatment to help alleviate intractable seizure attacks that have plagued me for the past 6 years.  Basically if the cranial nerves that exit the brain at the top of the neck are pinched from tight or misaligned muscles and tissues around the face, neck, and jaw then pain and a myriad of neurological problems can follow.  A physical trauma, especially auto accidents, often starts the problem.  Dental professionals who specialize in this area can provide relief for movement disorders such as Tourettes Syndrome, Parkinson’s Disease, tics, dystonia, and atypical seizure disorders using various dental appliances and therapies.  My research into this began a few weeks ago after an Ear Nose and Throat Doctor suggested I look into issues related to one of the twelve cranial nerves (vagus); I found that my symptoms involved seem to relate to several of them and require a broader, more functional bio-mechanical perspective.

Sooooo, since TMJ pain began for me after an auto accident in 1996 and worsened with convulsive episodes beginning in 2012, I brought up this topic with my chiropractor and brilliant primary care doctor this week.  Both agreed that specialized dental appliances are a good avenue to pursue.  Both have provided supporting medical documentation to support my case and the latter reviewed the Curriculum Vitae of the Dental Specialist that I have selected (after interviewing 13 dental professionals from around the country!).  My hubby and I are prayerfully preparing to proceed accordingly, with faith and confidence that the treatment will be effective in due time.

Once we made the decision, we had no idea what would happen next.  There are significant unknowns in this process, not the least of which is a significant financial commitment for specialized care out-of-pocket and for out-of-state travel for nearly 3 weeks.  We just knew that I needed a new treatment direction and that these new interventions seemed compelling to address many problem areas (’cause hey, even chewing food can trigger episodes!).  The next steps were for Steve to approach his employer for an extended leave of absence and for me to start scheduling appointments, making campground reservations, contacting family in the area, and so on.  Gentle Reader, it’s only been two days and the following blessings have already come to light:

Steve’s employer granted his request for a leave of absence and will provide a company computer so that he may work remotely while we are away.  Harris’s company headquarters is about 2 1/2 hours away from my new Doctor’s office by car and for the second week of our trip, Steve will be able to share an office there with a former coworker he knows who transferred there 2 years ago.  Awesome!  And guess what?  His employer is located near the Kennedy Space Center where Harris will be launching a ROCKET FROM CAPE CANAVERAL right in the middle of the 4 days we will be staying in the area!  Holy cow!  How cool is all of that?

Just a week ago, I finally was able to get in touch with a best friend from my childhood with whom I have not spoken in around 37 YEARS.  Guess where she, her sister, and her Dad live?  Very close to the same town where I will be having my treatment!  They were a huge part of my growing up years, especially after my parents were divorced when I was barely a teenager.  Tammy and I spent hours playing house or school on her back patio after dragging outside a myriad of furniture and supplies from both of our homes.  Sometimes we had just gotten things set up and her mom would come home from work so we had to put it all away again!  Then there was the backyard carnival we made to raise money for the Muscular Dystrophy Association.  Her little sister, Patty, dressed up like a gypsy to give words of wisdom in the “fortune telling” pup tent!  Their Dad was so very sweet to me when I would see him working in the yard, carrying tools along the sidewalk between our houses.  His kindness was very comforting at a tender time in my life.  All are good memories indeed.  I look forward to seeing each of them!

Halloween, 1960s, 1967, front porch, Linville, Warren, Michigan, Kids, children, costumes

From right to left: Julie, little brother Rob, Tammy, Tammy’s little sister Patti, and another neighbor at Halloween in 1967 or so!

If that wasn’t enough, we also hope to see an Aunt of mine who has lived in the area for decades.  Steve and I last visited her 5 years ago when I was near the beginning of this illness.  When I talked to her on the phone about maybe seeing her, she disclosed that she is struggling with a serious brain disease and having difficulty functioning.  My heart sank.  She explained quite candidly that her ability to perform activities of daily living has become increasingly compromised over the past year such that she doesn’t want to live alone anymore.  She has not been able to obtain assistance from her medical providers in obtaining the supports she needs.  It is not clear how aware my two cousins are of her condition; I may be the first person to visit her home for many years as all of us live 1,000 miles or more away.  My heart is breaking for her while my mind as a licensed occupational therapist is churning with the possibilities of what this all means.  Steve and I will start to sort this out by going to visit my Aunt with the goal to simply love on her, bring a meal, and visit for awhile.  Lord knows what will follow thereafter, likely some phone calls to my cousins up north . . .

Gee, if all of this has transpired in just 2 days, I wonder what awaits us in the next week?  We are praying continuously about everything mentioned here as we begin to make our travel arrangements.  There are repairs needed on the travel trailer and much to do.  What is certain though, is that our Lord Jesus Christ is already paving the path before us.   He always does, of course, and this time we are in awe as we can see it unfolding as we speak!  Very likely we will need to raise some funds for my care so stay tuned for the details and please pray with us as we embark on this magnificent adventure.  I have been through dark times before and have seen the Lord miraculously “restore the years the locusts had eaten.”  (Joel 2:25)  Sure looks like He is moving again in our lives right now in a big way.  Thank you for coming along side me with each post here, each little tear.  You make a difference just being there reading this, tracking my story.  God bless you for hanging in there with me!

Gentle Reader, I have hope again.  :J

Trusting Jesus

The following is an excerpt from an article entitled, “The One Who Returned Home” by Naomi Zacharias on page 14 of the recent http://www.rzim.org quarterly newsletter (Spring 2017, I believe).  She quotes a letter that recounts a story from Donald Miller’s book Blue Like Jazz, about a friend who was a Navy SEAL.  The closing remarks are from Naomi.  I hope you enjoy this piece as much as I did!  JJ

(The Navy SEAL) was performing a covert operation, freeing hostages from a dark part of the world.  When they entered the room, it was filthy and dark.  The hostages were curled up in a corner, terrified.  The SEALs initially stood at the door and called to the prisoners.  They identified themselves and asked the hostages to follow them, but the hostages wouldn’t move.  Alienated and frightened, they instead hid their eyes in fear.

This particular SEAL put down his weapon, took off his helmet, and curled up tightly next to the other hostages.  He was trying to show them he was one of them.  After meeting their eyes, the Navy SEAL whispered that they were Americans and were there to rescue them.  “Will you follow us?” he said.  The man stood to his feet.  First one prisoner did the same, then another, until all of them were willing to go.

(The person sharing this story) reminded me that Miller concluded this:  “I never liked it when the preacher said we had to follow Jesus.  Sometimes they would make him sound angry.  But I liked (this story instead).  I liked the idea of Jesus becoming man, so that we would be able to trust him, and I liked that he healed people and loved them and cared deeply about how people were feeling.”

(The storyteller) shared that it reminded her of what Jesus has been for her.  But it struck me how she has embodied this message in her ministry.  (The storyteller’s name is Analise.)

When Analise hit rock bottom, the reason she found safety in (a program called) the Word Made Flesh is because they were willing to sit in that place with her; they remember their own lostness and the mutual need for a Savior who rescues us.  He did not choose to do this in grandiose fashion.  No, he chose the utter loneliness and pain of the cross.  And so it is he who beckons us by sitting down beside us, showing us he became one of us.  He tells us he is our Savior, and he leads us home — so that we may all be the one who returned home.

The Boomerang Effect

The wooden angle sitting on the mantle was a souvenir/gift from the Land Down Under.

To toss it into the air and have it return in-flight to you is a skill few master.  We didn’t!

Instead we dust if off because it looks nice:  forming a paradox in design and practice with which I can relate tonight.

Here’s why.

boomerang, wooden, life, metaphor, like, things come back, return to you

A trip to our local hospital began after much preparation and somewhat tense spirit too.

Would the appointments go alright such that I could return home and rest before a party this evening?

I brought with me several “rescue remedies,” food, water, favorite medical supplies, etc.

Having my port flushed last month went reasonably well so this one today should too.


I’d been battling Small Intestinal Bacterial Overgrowth when some labs indicated liver stuff too.  My Doc was willing to order a test over the phone and both would be today.

The liver/gall bladder/pancreas ultrasound could irritate a tender tummy for awhile.

Worse came a “tic attack” with the realization that there are several tender spots.

Gratefully, recovery came quickly and I was off to the outpatient clinic for the flush.

The nurse completed everything slowly as I’d requested; my preparation was flawless too.

Can you ice your chest wall while having an ultrasound, apply numbing cream before leaving home, and finish your breakfast/morning supplements in the waiting room between appointments running only 8 minutes late too?  Sure you can!

But 8 minutes past the hour was too late.  With everything that went wrong, the process would take OVER SIX HOURS!

The nurses there are saints as they let me sit in that treatment chair forever if needed.

Something about that 1 1/2 inch needle plunging into my port never has bode well with me.  Or was it a slight change in tissue gradient from fluids and a blood thinner going in?

The procedure was completed and I thought I was going to be o.k.  Then I started shaking.

The shaking continued for over THREE HOURS!  Several convulsive spikes joined the mess.

Gratefully my beloved Stevers was able to leave work early, go home, and bring me an emergency dose of steroid medication at the hospital.  He was my hero once again.

Within 15 minutes, the episode stopped.  I lain in that recliner chair in shock for a long while.  I wept some too.

We moved to the lobby where I devoured my last bit o’ snack and began to revive.

Once home, I rallied to help Steve get out the door to the party with gifts, dish-to-pass, yada, yada, yada hoping to join him later.  Another FIVE HOURS LATER, I did.

Last year I was too sick to attend a gathering with these friends from out of town.  My beloved sent me a video back then of the kids opening their gifts.  Bittersweet.

This year I got to see most of the kids for a few minutes and all of the adults.  Twas sweet.

Another victory was being able to visit in a home with a history of mold damage.  Huge!

The First Defense Nasal Screens (See Julie’s Favorites), open windows on a cool Spring evening, and progress in reduced reactivity all appeared to help.  Thank you Lord.

My plan was to stay in the moment, just enjoying the light banter and updates from all.

No matter that no one asked me much about things.  I love them in Christ just the same.

So I live a Boomerang life, moving from wretchedness to sweetness often within hours.

I could brood the day long or keep my pretty tops sitting in a closet like that dusted toy.

Instead if my Lord grants the where-with-all to get back into life, moving ahead, slightly forward,

I will trust in His strength.  I will do it.  I will get there.  And like the boomerang thing, the trip back will cancel the trip out that maybe wasn’t so good.

For we will face trials in this life, those of us who believe in Christ Jesus. The real question remains:

Will we stay on the shelf when the flippin’ craziness is done?  Nope.  Not me.

I will get out and try to have some fun!

Dealing with the trauma of illness

Not that I have a total handle on this topic or anything but hey, I have learned a few things worth sharing . . .

Every day for over 5 years I have suffered waking seizure attack episodes of varying duration and intensity.  For over a year (ending last year) they averaged 2 to 5 hours per day!  At least once per month they would spike up to 12 hours on and off in a single day, sometimes requiring an Emergency Room intervention.  I have been to 3 different emergency rooms a total of FIFTEEN TIMES including once by ambulance.  After nearly a year of IV antibiotics for chronic Lyme disease these episodes are generally less than an hour per day now with some positive changes in triggers and patterning.  Significant testing and other treatments, research, and patient “networking” remain my primary occupation.  I am grateful for the improvements that have come including overall less pain from the repeated physical trauma of “head-banging” and wretched writhing movements (thanks to  periodic intervals of physical therapy and periodic chiropractic adjustments).

The journey is hell at times.  At my worst times I have questioned if I could endure this level of suffering one more moment.  My breathing has stopped numerous times and there has been one significant near-death experience with visions of “white lights.”  I have had to pray many times for the Lord to give me the strength to get to the bathroom when alone during hours of convulsive episodes.  Every type of healthcare provider I have ever seen and most close friends and family has witnessed them.  My husband is a saint, having cared for me often late into the night then getting up and going to work the next day.   A total of probably a hundred times he has had to carry me across our home when I could not walk, feed me, take me to the bathroom, assist me with bathing, take me to the emergency room, run urgent errands, and the like as my primary caregiver.  Probably a thousand times he has volunteered to bring me some type of “rescue remedy” to attempt to get the seizures to stop (generally at night or upon waking in the morning).  He never complains.  He is my hero for sure.

In other blogs you will read about all the avenues we have pursued to try and get me well:  chronic Lyme disease, heavy metal detox, mold remediation, obscure infections, dietary restrictions, neurology workups, dental issues, nutritional deficiencies, epigenetic testing and coaching, electrosmog, gut issues, yada, yada, yada.  I spend hours per week researching, managing my healthcare, dealing with extreme mold avoidance and other preventative strategies, and accessing my support system online or by phone.  Church worship is also online to minimize triggers from environmental stimuli, however this strategy also increases my social isolation.  Trips away from home are generally focused on essentials during my best times of day and occasionally with transportation help from a couple of sweet gals from church.  I wear a mask in their cars and sit on a towel covering the passenger seat but we find a way to connect anyways during those trips when help is needed about once per month.

As you can see, there is much abby-normal stuff during my days.  Social isolation and the ongoing seizure attacks are my biggest heartaches.  The latter causes both physical and emotional trauma when they are severe which still happens two of the seven days per week still marked by ongoing episodes.  The two this week included:  1) a violent reaction to an ingredient in an new injected medication that I need to treat osteoporosis and 2) a new strategy to treat severe Small Intestinal Bacterial Overgrowth.  Both of these conditions very likely are complications of ongoing illness as they were not present before I got sick on October 11, 2011.  Each new diagnosis will bring its own special kind of discouragement if I don’t keep my worries in check with my hopes placed in the redemption promised with belief in Jesus Christ.  Already I mentioned a few of the strategies I use for managing the social isolation.  What about the trauma?

I manage the trauma of severe, ongoing illness by trusting in my Lord and Savior, Jesus Christ.  This used to mean that I trusted in the promise of Jeremiah 29:11:

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.  (NIV)

Surely if there is a purpose for all of this suffering then it won’t be wasted.  It becomes part of a greater plan, encouraging me enough to endure even the worst of the pain and anguish I am enduring.  This viewpoint has helped me cope during the first 5 1/2 years of this illness.  It carried me through the decisions to spend the rest of some savings with the hope of a cure and to endure the side effects of such treatments.  I can look back and point to the skills and information that I have learned, write about them here, take to heart the remarks of others encouraged by my stories, and note the Divine sequencing of many things that have happened along the way.  The Lord has provided so much for my care that gratitude has replaced temporary doubts, frustration, discouragement, intractable pain, and so on.  Seeing some meaning in what I am going through or shortly thereafter, gave both me and Steve enough hope to keep moving forward no matter what the “cost” may be.  But what about when the process stopped?  The money ran out.  I am not recovered.  There was no where else to go this past Winter when I got to the bitter end of my proverbial rope with worse symptoms than I could ever imagine!  Yeah, that was the onset of facial shingles in December.  More hell and a hospitalization too.

That’s when I needed to learn to trust whether there would be a purpose I could see or if there would be no purpose or direction at all.  I discovered that complete trust in our Heavenly Father builds faith and the strength to carry each of us through ANYTHING and EVERYTHING.  It’s a supernatural gift bestowed upon believers in God Almighty who trust Him.  For those of us chosen to travel a path of excruciating suffering, we must find our way to this level of trust in the Lord our God.  Our faith will grow as a result and both will carry us through the dark times no matter how dark they become.  Did I tell you that frightful demonic attacks have come during the worst of the waking seizures?  Yes.  It’s more terrifying than I can describe but may try to do so another time.   At those times only the spiritual armor of God (see Ephesians 6:10-18) and this reassurance spoken by the apostle Paul will quiet my spirit.  God is greater than any threat in this world, in my world, period.

2 Timothy 1:7  (NKJV)

For God has not given us a spirit of fear, but of power and of love and of a sound mind.

Because what is my worst fear anyways?  Dying?  For me it is probably not dying but suffering even more with dying as the end result.  So finding peace when dealing with the trauma of physical and mental suffering must be accompanied by the reminders of Who overcame death, in Whom have I placed my trust, and in Whom will I find victory over my fears.  To extinguish the fearful thoughts I must again turn to the “sword of the Spirit” as described in Ephesians 6:17 as the word of God.  In the Book of John we find Jesus comforting a grieving friend when:

John 11:25-26 (NIV)

25 Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; 26 and whoever lives by believing in me will never die. Do you believe this?”

Not only did Jesus overcome the grave when He rose from the dead on Resurrection Sunday (Easter), He gave those who believe in Him the promise of a glorious eternal life in His presence where there will be no more weeping, no more sorrows.  There will be rewards for the faithful too.  There will be perfect peace, love, and joy forever.

the cross

I may never see healing this side of heaven.  I may see healing this side of heaven.  I really have no idea which one it will be or when it will happen.  In the meantime I will simply trust in Jesus Christ who knows my name and sees my suffering (Psalm139) and ordains it somehow for good.  He will be here with me always.  I ain’t dead yet so I trust that He will add His grace and power to see me through to my last breath.  Until then Gentle Reader I ask you,

Do you believe this too?