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

We survived our Christmas holiday

He suggested a restaurant, I located a coffee shop, we could save money by making our own food, then 4 of 10 family members cancelled, so a local brunch place it would be for our family Christmas gathering!

I intended to meet up with them that Sunday the 23rd but the old beast I battle interfered then lo within hours they were in the driveway and headed to the backyard just moments after I’d made it out of bed! Thank the Lord I’d showered before my recovery nap; the gals had dressed in warmer garments so their greetings on the Wintry patio meant I could see my beloved’s wonderful adult children after all.

The gifting seemed awkward but we were generous all around anyways then whammo it hit and seizing returned body-wide in full view, right there in the open air: my winter coat and silent eyes all around me. Some had not witnessed this hell before . . . what the hell? I prayed as my body shook violently and slumped down into the lawn chair, with me still wondering why I have to be awake to try to figure out what I am supposed to do during these nightmares when I can do nothing at all?

A plan came to mind and when my body writhing stopped, I dangerously dashed for the sliding glass door whilst screeching from my loins how horrible this is, my deepest sorrow, and my love for them all. I still dunno if anyone heard my guttural tears that began as I closed the door and lasted for the next hour with episodes that returned as I dragged my body back to the bedroom to crash. Again. Then I wondered, where was Steve?

Sounds in the background told the story that they had all left, including my beloved, with them . . . No one had brought me any food (I guess I was sleeping earlier when they were eating lunch with the live Christmas band delighting their visit), said good-bye, or showed any concern for my welfare . . . until 2 of them texted me messages of concern hours later. Ah, the days of living by the (inadequate) communication of our smart phones! It was all I had so it was something I guess. Steve returned a couple of hours later to tell me they had gone on with their plans of go-kart racing. The pictures on Facebook told the story of the great time they had. Do I want to see them? Say what?

This type of unexplained episodes continued, preventing worship at a Christmas eve service the next night so I braced myself to spend it all alone. How could I possibly hold my husband hostage at home with me when a couple of his adult children remained in town? Extreme chemical sensitivity was about to take him down as well when he got to the church and it reeked of burning frankincense so badly he could not stay inside the building. So we watched the services together online at home . . . Silent night, holy night.

Christmas required extra rest before a simple celebration with my beloved: no decorations or fancy foods just some gifts and an appreciation of the meaning of this day that was more apparent for me this year than decades ago. Simplicity does that. Christmas is measured in moments, however small, when you focus on the love that comes from our Savior, Jesus Christ. The traditions are lovely when you have them too. I tried to be positive and loving to my amazing man who has been faithful through so much heartache and sickness from me. How can I possibly sweat any small stuff when he always gets the big stuff right?

Little did we know that we would both become very sick with the flu within 3 more days. We had an errand to run together, at the end of which my beloved was already fading with illness. I joined him within a day and gratefully after some cleaning and making a pot of soup for us both. We still had not gone grocery shopping which didn’t matter since neither of us could eat hardly anything. That didn’t change much as the worst of this flu lasted FOUR DAYS!

Steve has started to surface back into life as he did some online studying; today was my first day I could stand in the kitchen long enough this evening to roast some chicken apple brats in the oven. Yeah, finally I wanted to eat a little more again after incredible pain and nausea lead to the loss of 3 pounds. I started to talk in complete sentences today while bracing my neck, rib cage, and abdomen when out of bed, yeah, afraid of making worse the new hiatal hernia and gastritis diagnosed 2 weeks ago. Can you say “I feel like a basket case?”

By the grace of God we survived our Christmas holiday. My beloved spent half of his vacation time from work battling the flu and barely seeing his adult children visiting from out of state; I never really recovered from this whack-a-this-or-that. This Winter illness is going to take me a few more days from which to stabilize . . . but interestingly the seizure attack episodes that flared at the beginning of our holiday week are down again. Yes, they are down! I have just found a way to take some nutrients that have been critically and chronically low and which are likely a major contributing factor to the convulsive episodes. To become seizure-free would be my desired earthly gift this new year. Thank the Lord we made it to 2019!!!!!!!!

We have been here before, you and I, Gentle Reader, dozens of times with my stories of hope and heartache and hope and heartache again. Call me a Weeble that Wobbles but she don’t fall down, I guess. Are you hanging in there with me too? Jesus makes the overcoming all possible in the end you know. (Please excuse my wee bit of humor, my Lord. Unlike me, you never falter.)

Gentle Reader: I pray that you did a bit more than survive this Christmas too. Happy new year? Oh yes, happy new year it is going to be! JJ

Will you still love me tomorrow?

The question we simply don’t need to ask.

The question that I simply don’t need to ask again, yet have wasted too many moments wondering, is the one posed in this song by the Shirelles.  Oh and Dionne Warwick.  And maybe Amy Winehouse too.  Such a classic song!

Each time I wind up in the Emergency Room, I wonder if my beloved will still love me the next day.  This morning he referred to yesterday evening as “another date night!”  Unbelievable.  All this love continues after about 16 trips to the ER in the past 7 years.  I am humbled and blessed beyond measure.

This blessing is hard to see sometimes when my body is breaking down in a new way once again.  Looks like an ulcer in the lower part of my stomach is the reason for a month of abdominal pain.  Over-the-counter and walk-in clinic medications did not solve the problem.  So after a CT scan under the influence of anti-allergy drugs and some more potent medication, I am in less pain . . . but oh so worn out.  I’ll see a gastroenterologist this coming week with an endoscopy likely to follow.  Going to try to keep my stress level low in the meantime.  I mean I don’t have any other of the risk factors that contribute to an ulcer (e.g. spicy foods, caffeine, alcohol) unless of course there’s a hidden H. pylori infection.  So more testing is needed to figure this one out.

The other “love” that could be easy to question is that of my Heavenly Father.  But I don’t.  I look around and see tremendous blessings in my life in that I have a warm home in which to convalesce, enough food and clothing, and finances for the important stuff.  My beloved is faithful and loving like “Jesus with skin on.”  What I don’t understand is how these illnesses isolate me from friends and family outside of our home and most notably, my husband’s adult children. 

My extreme sensitivities continue and are triggered by the fragrant products they (and many folks) tend to use.  We are just not sure how to manage this reactivity with our Christmas gatherings rapidly approaching.  We already had to decline having both daughters stay with us (which was a delight to host them in years gone by).  A trial of having his oldest stay with us for about a week 2 months ago, despite extreme precautions, triggered a violent relapse in the convulsive episodes.  I am now sensitized to even trace amounts of fragrance on her coat that was kept in a suitcase in our garage in between scheduled visits.  Then I had a seizure spike 2 days ago when she returned from some travels to pick up her suitcase . . .

My heart is breaking from more than the loss of acquaintances and friendships:  my relationships with my husband’s children never really got going.  Steve and I have been married for 11 years and I got sick just 4 years into our marriage.  I have been battling a serious illness for most of our marriage!  You could say that my limited visits with his adult children gave them more time to adjust to the fact that their father is remarried.  Well, o.k. maybe that’s it.  I already sensed that I needed to lie low during their visits in the beginning anyways, focusing on serving them good food and comforts and not speaking up too much nor complaining when their Dad jumped to see them, rescue them when the trials of young adulthood came along.  No problem.  Fix the car?  Pick them up at the bus stop?  Join them at church?  I just had to stay home due to illness factors and couldn’t go with their Dad to help them, that’s all.

They don’t really know me either though.  We profess the courteous “love” greetings yet would I ever really see them again if something happened to their Dad?  Oh dear, I should not even go there.  I now realize that this barrier between us is completely out of my hands.  Remember when I sent along baked goods with Steve for when he visited his family in Arkansas without me 2 weeks ago?  Yes, I need to rest in the hope that what I could do has been done as unto the Lord.   My Jesus and my beloved know my heart.  They hold together the parts in me that are breaking and the inner tears.  And the Lord also holds me in tender moments like these right now.

I need to know that your love.  Is a love I can be sure of.  So tell me know so I won’t ask again.  Will you still love me tomorrow?

Yes, for sure.  JJ

Jeremiah, 31:3, everlasting, love, doubting, Christ's, Lord's, faithfulness,what He thinks of me, endurance, love through the trials

In a far-off land the LORD will manifest himself to them. He will say to them, ‘I have loved you with an everlasting love. That is why I have continued to be faithful to you.’

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

 

I was made for you

You looked at me with the bluest of eyes and said that we were going.

The ugliness of illness that had proceeded that moment held the rest of the day in the balance —

Obligations awaited us yet all the precautions, procedures, special preparations, and planning getting to this moment made no difference.

I could not move until you moved closer towards me and spoke into my moment of sickness.

And in a scene borne out of love that many will never find,

You gently lifted me to the edge of the bed so that I may dress, may push the mangled hair from my own eyes.

As if time itself breathed slowly from one moment to the next, I became able to sit up on my own again.

We chose the adornments to fit the occasion; we got me standing then walking forward.

I drank some water from a bottle nearby.  My brain moved more quickly and the next tasks came alive.

And as if what would be horror to a fly on the wall just minutes beforehand,

You tenderly called to me our next steps as we prepared to go meet the rest of our day.

We both had a bite to eat, groomed ourselves, and moved closer to the door:

The events of getting ready now no different than what has become the routine of trials endured many times before.

But this time it was your love that called me forth, moved me on; yes your tender words alone helped move me on.

And when we were along down the road a ways ready to meet the others,

I sat in awe of the life the Lord had crafted for me, for you.

Never would we have asked for heartache and sorrow that looked like this

Yet in a dreamy place would we have designed a magnificent love made just for me, just for you.

It doesn’t matter how we “getter done” when the Lord sits with us at His table

When His grace transcends the stuff of life, when I am carried by redeeming grace from both of you.

So when the happy couple says their vows at their own marriage supper in a day,

May they somehow come to know what true love lives like:  He looks like you dear one:  the Father of the Bride.

I love you Steve.

Just Julie