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

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Treatment Update

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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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My Testimony: Salvation in a Laundrymat

Salvation in a Laundrymat The Testimony of Julie November 27, 2005

Originally published on http://www.fellowshipchurchonline.com/

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table in a laundrymat

When the trials of life got me down

And my angst led to seeking and a new church

It was the outstretched arms of the laundrymat attendant

That led to a decision washing me clean, indeed.

 

That was 1988: I was single and a Christian man had just entered my life. My life was stuffed at the time with full time work in healthcare and graduate school. Dabbling in church attendance and regular Al Anon Adult Children of Alcoholics meetings were fueling a desire to learn more about God and the person of Jesus Christ. I had so many questions, so many unresolved hurts from my childhood. Sitting in the audience of a very large, non-denominational church brought tears and stirred something deep inside me. Something I hadn’t felt in years . . .

I grew up attending a local church, complete with first communions, baptisms, lighting candles, going to the confessional, and the like. As a teenager and in college, I attended other churches of the same denomination and the routine, the rituals, were pretty much the same. But where was God? I could sense Him sometimes on Sunday mornings and in one particular baptismal service for my Godchild, Tommy. Why wasn’t He helping our family on the other days of the week?

My family life was in shambles. My father developed a mental illness and left our home when I was 9 years old. I would later understand that his struggle to overcome his mental illness exposed me and my brothers to sorrows beyond belief. There were inappropriate experiences with other adults as well.

We struggled to survive. My mom went back to work to support us and a few people tried to help where they could. The weekly allowances, ice cream from the Good Humor truck, books from the South Elementary School Book Club, and chocolate milk for lunch ended. My mom struggled in her identity as a single mom. The church fell short in meeting her needs, our needs and we were shamed by others. Some of the neighborhood boys weren’t allowed to play with my brothers. I felt rejected too. We kids fought a lot. And God bless the babysitters who risked losing their sanity by coming to our house!

My brothers, in time, would turn to alcohol or drugs to endure life. Both would eventually spend time in jail and never quite make it in the work world. Neither one married. One died of alcoholism and the other is devoting himself to care for our mom. Amazing! By the grace of God, I was given different responsibilities and opportunities.

A neighbor introduced me to the Warren Jayteens, the teen group of the Warren Jaycees (in our city just outside of Detroit, Michigan). That was the first of many new interests, part time jobs, and classical guitar lessons, and the list goes on. I became a “human doing” instead of a “human being.” My worth came from my activities, my accomplishments. And on the outside, I excelled.

Inside, I was hurting. I sought comfort in dating relationships and dabbled in alcohol and marijuana. My tolerance to alcohol increased. The partying continued when I moved to Illinois after college to start my first job in healthcare. I would later see that my profession was a gift from God. He gave me the insight to pursue a profession in which I would teach others the skill of adapting to any circumstance. I personally benefited from this as I entered graduate school, found Al Anon Adult Children of Alcoholics, changed jobs, moved a few times, and met a Christian man.

That dear man helped me with my many questions about God and the Bible. The witness of his upbringing in a Christian home spoke volumes of what it really looked like to grow up in a stable environment. His father was a leader in his childhood church. The witness of Craig’s life and of his family, showed me more of what it was like to have good clean fun and led to a decision for Christ.

On our third date, he brought me to a very large, non-denominational church. There were 4,000 people at each service! I thought it was a cult! I was wrong. My soul got fed for the first time. Some months later, a laundry mat attendant sensed my needs, my readiness, and witnessed to me. I will never forget that day. I can still see her face. She had so much love in her eyes. That night, alone in my apartment, I prayed to have Jesus come into my life. I repented of the mistakes of my past. I was truly washed clean by the blood of Jesus.

Two years later in 1991, Craig and I were married in that large, non-denominational church. We worshipped there five years. I grew in my understanding of the Christian life. I tried to be a “good Christian” wife and fell short a bit. My walk with the Lord would really begin several years later when Craig led us to a smaller Bible church. It was there that I began to unravel the part of the pain of my childhood that had created a barrier to developing an intimate relationship with the person of Jesus Christ. More tears. More healing. And a faithful man to walk with me. Very cool.

Things changed March 4, 2003. Our marriage had endured several trials and disappointments by then. Craig’s father had died, I was injured in an auto accident with lingering effects, Craig was laid off twice, we lost the court case related to the accident, and my work-related injuries created financial and emotional hardships for both of us. I always returned to work after a setback. I adapted. Craig pursued a new career direction as well in aviation and we felt the Lord’s blessing and provision. Then he had to stop suddenly and was never quite the same after that. He began to withdraw from me. At the same time, he threw himself into church service and became a Deacon. I tried to start a second business and return to work in healthcare. God had other plans.

On the morning of March 4, 2003, I prayed a desperate prayer for the Lord to intervene in my life. Intervene he did! That night I received a phone call and learned that my husband had been in an affair for about a year. I asked Craig to leave for awhile that night and he did. He never came back.

Standing in my living room, very late at night, very alone, I was in shock. I knew my life was about to change but had no idea how it would. A verse came to me from Jeremiah 29:11:

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)

That verse would come back to me again and again at key times over the next three years – at times when no other words could possibly sustain me or give me hope. Like the night of the fire . . .

Let’s just say that major changes occurred in rapid-fire succession from that day forward. (Riddle: What day of the year is a command? Answer: March “fourth.” Geez!)

My grandmother died. I refinanced our home. My brother died. The divorce process became eminent. I sold my home. I moved. I lost my job due to an injury. I was promoted in my home business. I moved again. I got a temporary job then a permanent position. My mom was diagnosed with lung cancer. The divorce was final at Christmastime. Geez! I was in a fire. I moved twice to temporary housing. I moved to a beautiful condo where I now reside. The healing work has begun, from the inside out!

Whew! I thank the Lord for walking with me and for bringing the Army of Believers who have been there, led me, and carried me on this journey to today. It takes an Army and an unshakable faith in Christ to rise from the trials of life victorious. I pray daily for Craig’s repentance and return to the Lord. And I do know this: the choices we make each day determine where we ultimately land in our walk with the Lord, our walk through the days of our lives. Since my prayer has always been for my own sorrows not to be wasted, I remember to seek the face of Jesus each day, especially when the mud flies. I pray that Craig will too. He has incredible gifts of teaching, of reasoning, of physical health, and of loving. May these be used for God’s glory soon.

As for me, I’m called to do what I can with what I have, where I am. (At the time of this writing in 2005, I’d) just had a “Thanksgiving” party to thank all the people that helped me; the evening was wonderful! I pray that the Lord continues to restore me. Through this process, my purpose has become clear: to build something of significance that blesses other people. Gee, that’s what I’ve always wanted in my heart before I could put the words together! To know this purpose is the intervention I prayed for March 4, 2003. I am closer to this dream now more than ever before. And it came this way. This way? Yes, it came this way.

And since this has proven to be true in my life I must say that I really wouldn’t want it any other way!

Thanks.  Just Julie

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ADDENDUM:  It is now 9 years later when I have come across my testimony in an old computer file.  I am amazed at all the Lord has walked with me through!  My mother passed away in March of 2007 and I married my intended beloved, Steve, in November later that year.  I moved to Indiana to marry Steve, to slow things down, to rediscover so many rich outdoor activities, and to enjoy a loving relationship with Steve like none I had ever experienced before.  Even a serious personal illness, my brother’s stroke, and a medical leave from a lifelong profession that I love could not deter the love I experience from my Jesus and my Stevers.  After all:  life goes on.  I am exceedingly grateful that the Lord never changes.  I am exceedingly grateful for so much!

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The most important element in all of this, in all of my life, is my personal relationship with Jesus Christ.  Thank you Jesus.

That is all.  JJ