If only I knew

If only I knew back then what my new life would be like, would I have chosen it? Probably not.

The summer of 2007 was a very exciting one for me. I had just met an amazing man of God and had established myself in a beautifully decorated condo in one of the nicest suburbs west of Chicago. I had a great job that paid my bills along with some extra resources that I inherited when my Mother passed away. The grief associated with her death was complicated by navigating the affairs of her estate. Regardless, a new love makes everything nicer, lighter, and bearable even exciting. In due time I would come to understand my Pastor’s advice not to marry in the same year that I lost my Mother to her complicated health issues. Steve and I married at the end of the year anyways and I was off and running in Indiana with my Intended Beloved. God was so good!

Before long I was completely overwhelmed by all of the changes in my life. When I worked in mental health, we used to give our patients a Stress Management Scale to check off how many changes they had experienced in the year prior to hospitalization. Life events were given weighted scores, tabulated, then matched to a scale predicting susceptibility to illness. Yeah, my score was over 300 which is ripe for a stress-related illness. But thankfully, it didn’t happen. The adjustment to a new family life, State, house, church, job, pet, grocery store, bank, yada, yada, and husband was still completely overwhelming. Then I had to leave my new job in Indiana to find another because of ethical issues. Holy cow. It was a lot of changes in a very short period of time!

Then my Dad, who had been estranged from our family for 27 years, contacted my brother in Michigan. Mike was still living in our Mom’s house so my Dad was able to use our old phone number to reach him. Soon I was in touch with my Dad as well, catching up and trying to figure out how to deal with the sordid memories and circumstances of his leave-taking from our lives so long ago. Overall it was a good process. He was kind and generous. He shared stories, many of which I hadn’t remembered. After a few years of slowly getting re-acquainted, it was time to meet in person at his home in Florida. Mike was invited to go separately but never accepted the offer. I did. Steve and I went under an extremely stressful set of circumstances with my job at the time that would later magnify how important that visit to see him would be to my future. It was really good to see my father again.

Less than 2 months later, my Dad passed away. Mike never got to see him. My own visit and especially having shared it with Steve, were instrumental in figuring out how to manage my Dad’s affairs from where we lived in Indiana. We had a dinner with my Dad’s “tribe” of friends along the Forgotten Coast (so telling, eh?) of Eastpoint, Florida instead of a funeral per se. And over the next year, it would take dragging my brother through endless legal procedures to settle our Dad’s estate especially the selling of his truck. Later on with the inheritance that I received, I bought a newer truck like my Dad’s and became a woman who drove a truck — NOT a compact SUV or car like every other woman I knew drove! After all, I now lived in Indiana. Seems like every 3rd person here has a truck for work or various projects where ya gotta haul something from here to there! I liked gardening so it worked better for me than my Hyundai Tuscon. Over the next 4 years I finally had an opportunity to take the class to become a Master Gardener. Perhaps the truck was part of the overall uniform? It sure hauled a lot of soil and mulch, paddling gear and other stuff. How did I ever live without a truck in the suburbs of Chicago? Well gee, back then I lived most of my years in a townhouse then a condo!

My life drastically changed at the end of the same year of 2011. I was barely past the grief and memories stirred with the ordeal of my Dad dying when I contracted a serious illness kayaking in a local reservoir. Perhaps this stressor finally broke me down. Viral hepatitis became the first domino in a cascade of serious health issues that challenged even our brilliant family practice physician. Sure I had some hormonal and orthopedic issues in the past, even chronic pain, but nothing compared to the daily convulsive episodes and myriad of severe symptoms that beat up my body as I practically crawled through 2012. By February, I could no longer work. I felt that I was putting both my occupational therapy patients and myself at risk should I continue. I struggled to concentrate, to function, to sleep, to complete basic activities of daily living. When my Doctor thought I had underlying chronic Lyme disease, the treatments he prescribed felt like they nearly killed me. Then came the first of a series of alternative medicine treatments. It was the Beam Ray Rife machine that triggered the daily tics, the seizure attacks that escalated into the worst hell I could ever imagine. The episodes wouldn’t be diagnosed as epilepsy but they were equally as devastating. It felt like my life as I knew it was over. Actually, it was.

If only I knew that I would become seriously ill just 4 years into my marriage with Steve, would I do it all over again? To me that is a rhetorical question. Who would choose the extreme stress of almost complete social isolation? This included separation from Steve’s wonderful adult children and family who hadn’t had enough time to get to know me from their homes out-of-state or out-of-country, let alone my own friends and family. Who would choose re-injury of chronic pain issues every day and every night when the involuntary, violent convulsive episodes would start about 10:00 pm every night and return upon wakening every morning? At one point I noted over 30 symptoms to my complicated, serious illness that baffled specialists in-state and out-of-state. Over the course of the next decade, over $100,000 of savings and income would be spent trying to find answers. Treatments would diminish the worst symptom but not remove it or the episodes would increase again after a few months of a reduction. It would take almost 9 years to find cranial nerve, especially trigeminal and vagus nerve roles related to a condition diagnosed as Autonomic Dysfunction. We found tools more recently to stop them after a period of time but not prevent them. The grief and frustration were crushing to both of us. Steve had support from his family and friends, work and church. My support circle caved in with each passing year. I made a few new friends online dealing with similar issues. I knew I wasn’t alone because of their friendship and prayers from them and believers who became distanced; the constant companionship of the Holy Spirit kept me alive and going most of all. He alone re-started my breathing hundreds of times . . . I now longer feared death but saw it as a type of relief should it come.

We simply cannot know what lies ahead of us in our little lives. The Bible tells us that man makes his plans but it is the Lord who orders his steps (Proverbs 16:9). The Bible tells us that He has plans for us, to prosper us and not to harm us, to give us a hope and a future (Jeremiah 29:11). The Bible tells us to trust in the Lord and not in our own understanding, that He will make our paths straight (Proverbs 3:5-6). The Bible tells us a story where He restored the years that the locusts had eaten (Joel 2:25). And so much more. When the months rolled into year after year after year of serious illness for me, when the convulsive episodes and tic attacks racked up into the thousands, when people close to me started to doubt their medical origin even when confirmed by tests and experts, when the money ran out for aggressive treatments, when the illness alluded three large research medical centers in the country and several specialists out-of-state . . . I hit terrible periods of despair. Then I planned my suicide in October of 2019. When I realized to follow-through on my plan would be to believe the lies of Satan himself as he smiled in my mind’s eye, I realized that I was being deceived. Death, like divorce, is not an answer but a new problem. Believe God’s word and promises instead. I chose to accept that I am simply too finite as a human being to fully grasp these Bible verses, God’s real plan for my life, what I cannot see, what my life is really about. I chose to follow Jesus.

All I have is here and now with you Gentle Reader. It’s not up to me to end the timeline. It’s not up to me to write the next chapter of the story of Just Julie Writes at Hope Beyond. My hope and future are in the hands of the Lord. I pray that my hands type as unto His grace, His redeeming power to overcome.

It is up to me to choose to enact a faith in an infinite God Who is beyond what I can see. He knows I have seen and endured a lot of horrible things in my life before I ever met Steve. What I could not even imagine before this past decade was what it would be like to go through it all with a man who loved me more deeply than I knew existed in life. He was often my Jesus with skin on. He is loyal and yet human, strong and tender, God-honoring and God-fearing, loving and still driven to pursue his own dreams too; Steve is my provider of all I would need in my earthly husband. I am truly blessed. We did reach a crisis point in our marriage twice during this nearly 10-year journey within our over 13 years together. We got through them and healed the pain of potentially losing each other. More intimacy grew between us as a result, along with trust. The spiritual battle that came along with each test melted away as unto the Lord. Only the Lord knows what those moments were really all about.

Only the Lord knows what all of the changes, the stress, the spiritual battles, the strife in our lives are really about. I’m sure that each of us would freak out if we really knew what the trials in our lives were really about. One day all will be revealed. For now tis better to lay down our swords and pick up His along with His shield of faith. Put on the entire armor of God while we’re at it. This life is not for wimps, I tell you. JJ

But the old friend has no name

My hope went underground when the testing described in my last post revealed nothing of value.  I was crushed.  My beloved hubby had to take part of a day off of work and I had to take two drugs to be able to tolerate the contrast dye.  My doctor sent over new orders to the hospital on the morning of the test, creating further complications.  That new test was not yet authorized by my insurance company.  So would I have to come back and take more drugs, Steve take more time off of work when both tests could be done that day within minutes?  What shall we do?  The radiology staff nor us knew what to do.

We decided that since I do have a secondary insurance, to proceed with both the CT angiogram of the neck and the CT angiogram of the head that day.  The views would be with my head and neck in a neutral position, not in neck extension (which is the position that triggers convulsive episodes).  So I decided to lie on the exam table with my neck partially extended.  True to form, soon after they pushed the iodine contrast dye into my veins a tic then seizure attack erupted!  I couldn’t speak.  Steve let them know the course that these things take so the staff lifted me off the treatment table, onto a gurney, and into an empty room in the adjacent MRI suites.  There we were in the dark until my personal hell decided to stop.  (See here if you haven’t seen it yet.)  Steve helped me to the bathroom via wheelchair, the tech wheeled me out to the exit of the hospital, and we were on our way home.  Somehow I cleaned up once home and got myself to bed to sleep off the drugs for the next 6 hours!  The stress, the drugs in my body diminished thereafter.  All there was left to do was deal with the trauma of what had happened and wait for the test results . . .  No problem, right?

What followed represents the good and the bad of the patient having access to her own test results through the electronic medical record mandated by the Affordable Care Act.  I got my test results 3 WEEKS before the Doctor appointment scheduled to review them! The test was on a Friday and on Tuesday I was reading the radiology reports.  I was crushed.  There were no vascular anomalies that would explain why tipping my head backwards, certain chiropractic adjustments, sleeping on my left side, and a host of other identifiable kinesio/sensory stimuli trigger violent convulsive episodes.   Further, the question remained as to why these episodes are continuing, albeit of less intensity and duration overall, 6 months after treatment with specialized dental appliances?  This treatment brought me an 80% reduction in seizure attacks.  But after chiropractic treatment resumed, that number started to go down:  the episodes had started to increase again.  The “old friend” has returneth but still has no name . . . no cause.

In a future post, I may disclose the profound effect of this dead end in my seven years of battling a serious illness.  Last week after yet another difficult medical process revealed no answers, I really wanted to die.  Within a day that feeling changed and I continued on with my activities of daily living, some volunteer projects, and prepared to attend a women’s retreat within a few more days.  The time away helped some.  I don’t want to die I just don’t know really how to live this way anymore.  There may be some clues in the test results of what to focus on next related to a thyroid condition — or maybe not.  My veracious researching a cause, a cure has come to a screeching halt.  Right now is the time for me to dwell in the eternal space of my Savior, Jesus Christ and lie this illness at the foot of His Cross.  The lies of Satan and his tools of discouragement can go to hell with him, period.

Can’t say much more than that right now.  Tomorrow I need to be up and energetic at an event I thought I could volunteer at in preparation for another project of greater interest to me.  We’ll see how it goes.  My alarm is set.  But the get up and go, the drive in my heart is more asleep than I am at the moment.

Maybe something good will happen soon?  I’ll letcha know if it does, Gentle Reader.  You are always on my heart and the first to know as usual, k?  JJ

The Medicine Cabinet

Pray tell how much do you think I can hold

In my shelves bursting forth from the orders?

“Try this, take that, or Google the one I heard about”

Becomes license for judgement once thought to be clinical.

Not learned in school but that of “hard knocks”

The ideas flow too simply during paid consultations

Such is the life of a lab rat in the cauldron of illness

Where test results get mixed with expensive remedies.

So I look up interactions online thanks to drugs.com

Although many will be borne out of a bad trip on a Tuesday

When I try your best guess out of desperation, my last dime

And occasionally find relief or find hope a fraction of the time.

“I’ll take it,” I say under my breath as a new protocol prints out

My medicine chest overfloweth, my fingers sore from researching

Til someday the Lord crafts a breakthrough I shall not give up:

For the Great Physician love me more than this infirmity for sure.

Just look up, look out Gentle Reader if you suffer along too

Have I not commanded you? Be strong and courageous.

Do not be afraid; do not be discouraged,

for the LORD your God will be with you wherever you go.

Proverbs,4:22, medicine cabinet, God's word, Bible, the word medicine, hope, healing, Great Physician