Less shock, more bounce

Initially I suppose it’s like when a balloon breaks. There’s a pop then a blubber when the rest of the air rushes out. The rubber skin is thin and gives way all-at-once except for the last little bit of air. The spent orb lies limp on some horizontal surface never to have value again. How unlike the balloon we are when we are popped into shock then deflated by trauma. With the Lord’s help, we can bounce back!

Photo by Gratisography on Pexels.com

Emerging from a violent convulsive episode, the kind where I am awake and cannot breathe or move, has the effect of popping my mind into a state where I cannot communicate. My Doctor described it as a dulling of my ability to think but that’s not what I experience. When I am struggling to breathe and ANY initiation of movement, even from my tiny vocal cord muscles or diaphragm trying to produce speech, throws me back into seizing. I have to ride it out for a time. Sometimes I have to cough to re-start my breathing reflex. Through it all, I have to evaluate if I can blurt out any intelligible words and if it’s worth the probable blow-back, rebound of seizing that follows. And when I do speak, I choose the fewest number of words that will communicate the most. Pithiness is key. The rest of me becomes as limp as that deflated balloon if the entire episode has gone beyond a minute or two. Usually I can’t even move my arms to try to take a rescue remedy until the seizing has somehow paused! Kind of backwards dontcha think? Weakness and headache and ringing in my ears and all kinds of nasty effects usually last a long time such that I may need to be fed or carried to the bathroom or bed, or just lie motionless until motor control returns. Then there’s the neck pain. Feels like whiplash. Then there’s the horror of realizing what someone else has just witnessed me this episode. I just want to disappear from the world afterwards, become invisible.

My last post was after an episode so horrible that I could not write about it in complete sentences. My husband graciously had taken off from work to drive me to a Doctor’s appointment. I was already in a lot of pain whilst sitting in the waiting room. The seizing started early in the visit and escalated so violently that I had slid down in my chair, curled to my left side trying to brace my head-and-neck as gutteral screams of holy terror emerged from deep within me. I struggled to breathe. Dr. J attempted to evaluate my back and right-sided pain so he could do a chiropractic adjustment. Seriously? He had Steve lift me up from under my arms as my legs gave way beneath me. Attempting to stand exacerbated the seizing. I had to let go which left me hanging from his arms. All I could do was cry in between gasps for air. Dr. J pushed on several upper lumbar segments of my back then had Steve put me back into the hard office chair. The convulsions didn’t stop. Dr. J had Steve pick me up again to attempt more “hanging adjustments” then plop me onto the exam table. Dr. J had discovered in prior visits that cervical impingements had the power to worsen my condition; cervical adjustments could bring me out of an episode when I was in a lot of pain as well. So within a minute of some adapted type of manual manipulation to my neck, my body screeched to a halt. The episode was now over.

I lain on that exam table staring at the ceiling, in shock. All of this was not a new phenomenon but each one is exceedingly disturbing. Dr. J has seen and brought me out of dozens of horrific episodes before. But i don’t think that Dr. J has seen a complete neurological collapse of my lower extremities nor repeated screams as if my brain was ON FIRE!!! Coupled with the gasps to breathe, searing pain, and violent amplitude of convulsing, this was probably the worst episode I’d ever had in Dr. J’s office. I whimpered as I eventually returned to my padded but hard office chair, shell-shocked by what was still going on in my life. We are nearly 9 years since the first convulsive episode on November 20, 2011. Why hasn’t anyone fixed this yet for crying out loud?! Dr, J’s timer had long gone off during the office visit and he appeared to be wrapping up his clinical summary on the computer. Somehow I found the strength to blurt out, “can we do some kind of labs or testing?” Evidently I’d hit the BINGO button with Dr. J. He ordered labs, an MRI, ultrasound, and office tests on the spot. It was time to re-evaluate a bunch of things. Results have now started coming in as I finish up the last of the scans, pending insurance approval of course.

It took me a day to partially recover from that incident last week. The next day I pushed myself to go grocery shopping early in the morning BEFORE going to bed (as my sleep/wake cycles continue to be reversed) and it took another day to recover from that outing. All of this came on the heels of a full moon, failed 2-week trial of an anti-fungal that escalated the convulsive episodes to FIVE HOURS PER DAY until I stopped it, the Doc visit and stress of follow-up medical testing, and short trial of an anti-parasitic medication before the full moon. More testing and IV fluids continue this week. I am exhausted. But hey, a new herbal anti-fungal came in the mail two days ago so whadddya say I try that? Geez. Why do I even try anymore? I just do.

18So I say, “My splendor is gone
    and all that I had hoped from the Lord.”

19 I remember my affliction and my wandering,
    the bitterness and the gall.
20 I well remember them,
    and my soul is downcast within me.
21 Yet this I call to mind
    and therefore I have hope:

22 Because of the Lord’s great love we are not consumed,
    for his compassions never fail.
23 They are new every morning;
    great is your faithfulness.
24 I say to myself, “The Lord is my portion;
    therefore I will wait for him.”

Lamentations 3:18-24

This scripture from the October 10th meditation in A Spectacle of Glory by Joni Eareckson Tada equips me to bounce back from the darkness of my suffering. Unlike a balloon that is left lifeless, useless, and seemingly hopeless, the Lord renews me enough each day so that I may carry on the tasks, the journey that He has ordained. Like getting all of those lab tests done, on top of other labs and medical appointments already scheduled for me. On top of some basic self care and chores that must be done. But hey, I would have never met Gary in the waiting room at our local hospital if the tests hadn’t been written that fateful day in Dr. J’s office nor had I gotten to the first lab too late to do the lab draws there. Nope. The man in visible pain rolled his walker to the chair right next to me for a Divine appointment of prayer and ministry that bounced me out of my own stuff without hesitation. He said he doesn’t have anyone praying for him. He has several tests and a kidney procedure coming up soon. I hope you will pray for Gary too, Gentle Reader. And me too. Gotcha covered already. Thanks a bunch, JJ

Never Give Up

The pattern has repeated itself so many times that I do not know why, in my humanity, that I am still here. There must be a God.

When suffering exceeds the limits of the human frame, or so it seems, then there must be more holding that person together. There must be a God.

Satan will use every and any negative emotion, event, infirmity, mental game, situation, deficit or even excess, pain, memory, experience, high or low to attempt to separate us from our Creator. When he ultimately fails, we know there must be a God.

Our worth has little to do with what others think, do, or say once we come to know Who knew us from our first moment of life. As this transcendence to seeking others to seeking God becomes real, we will understand that God has a personal form.

What that personal God shows us in His mercy and grace, speaks to our hearts in a way we can know and feel, so that we respond in submission and an eternal embrace. The love and acceptance you will find therein comes from Jesus Christ. He becomes not only THE God but YOUR God.

We are stewards of what happens to us just like the stuff that is given to us to use in our lifetimes. And if your journey like mine has included chronic illness, we still have a stewardship responsibility to use what has been allowed in our lives for some greater good. Yes, even the bad stuff. Use it to point others to the hope you have in Christ. What has He done for you? For what are you grateful? How did you overcome the grave marker of despair? How did you come to understand that the Lord is not Santa Claus and that bad things happen to good people in a fallen, imperfect world? And how did you become o.k. with all of that?

So what then about the meme above? What if others judge you anyways no matter your “testimony,” mock you, and really don’t care about what message you have to convey? You have to live your life anyways in concert with the tri-une God who will never leave you or forsake you. What He thinks is what matters most! His Holy Spirit will guide you along the way, take your prayers to the Father and let Him help you to know that Jesus Christ is real and really God. Oh and especially reassuring is that He will make all things right one day, maybe soon.

I write these thoughts as I sense gradual breakthrough coming in my battle over a horrific illness these past 8 years. Improvements are lasting more than a day. Treatments are starting to work and I can do some things that I enjoy at least one day per week. Sleeping is more restful for at least one, 4-hour segment with at least one of these during the nighttime where it belongs. The convulsive episodes are more consistently less intense, shorter, and sparing of at least one day per week. I am somewhat less reactive to more types of noxious sensory stimuli. Progress is not perfection but I gotta shout out that this time for me there are clear improvements in my life as a whole.

I knew a young bride some years ago as her wedding got closer, who faced the frequent harassment of an overbearing mother-in-law. Her own mother taught her a simple technique of taking the verbal assault as if they were splashes of water. The young lady learned to let those splashes of water run off of her like water on a ducks back, exclaiming in her thoughts, “QUACK! QUACK!” The little internal laugh of such a silly technique has actually helped me shed the critical remarks of others many, many times. With the COVID-19 pandemic, I have had several folks claim my conservative views were due to my health problems. No one cares about my Master’s degree nor extensive work experience in the health care field. I get shot down as one of those with a “compromised immune system,” probably o.k. to let go, to get sick, to die. Seriously! Or I am not someone whose opinion counts about anything important because I am not important. And that is a LIE. QUACK! QUACK!

Just don’t give up Gentle Reader, k? No matter what gets thrown at you or thrown against the walls around you, keep going. Lean on the Lord as the person of Jesus Christ to provide supernatural strength and wisdom. Dig into His Word if only for one verse at a time. Cling to it like a lifeline! These are crazy times indeed. Regardless the God of the universe has overcome it all!

Belief in the Lord Jesus Christ may just change more than your own life. JJ

1 John 5:4

For whatever is born of God overcomes the world; and this is the victory that has overcome the world—our faith.

It's a Mad Mad Mad World NOT!

Two million or more people moved from wandering in the desert for some 40 years to a dedicated process of preparing to realize their mission, their dreams. Virtually every need had been met over 4 decades, every action guided by the God of the universe that led them there, and all transpired with displays of majestic power to encourage them along the way. They were free after years and years of harsh slavery, multiplied fruitfully, and were about to receive all that was promised to them. What more could the children of Israel have wanted? In their own minds, much more. They griped, built golden images to worship, and failed to heed their leaders over and over again. Many were punished and died as a result; many others just followed along while some questioned where was God? Gee, these people would make “good” Americans right now!

We gripe when our needs are not met within tiny frames of time. We worship people, places, and things instead of the Lord our God. We fail to respect the very leaders the Lord ordains for our lives whether it be our pastor or the President of the United States then wonder why we personally don’t feel respected either. We resist the natural consequences of our actions, fight for some lofty goal of social justice that will never fully arrive in this fallen world, and in doing so push ourselves further away from the God of mercy, true justice, grace, love, and peace. It’s a mad, mad, mad world right now. And the more we strive in our own strength, the more we will squelch our lives of the gifts of this unique time in human history. We are at war with an enemy more “unseen” than the (.3) micron coronavirus-19. Our enemy is our very own pride. A pride that separates us from God and each other, more than “social distancing” ever will.

I live in the heartland of the United States where hard work used to pay off. Whether you went to college or worked your way up the ladder of a manufacturing plant, worked in the trades, or built a small business, you could feed your face and that of your family if you just worked hard. No matter what life threw at you, you were going to be o.k. eventually. Eventually I would come to know my own work ethic as a virtue instilled by my Lord and Savior, Jesus Christ, who gave me the skills I would need to navigate life until I found a personal relationship with Him. Thereafter, my strength would not be enough to survive: the tests and trials were too great to overcome them on my own. And by seeking His face, my Lord sustained me, provided for me, grew me into the woman that I am today. Often I don’t feel these gifts of mercy, true justice, grace, love, and peace. More importantly, I know each are there all of the time no matter what else is going on.

I’ve had a rough go of things again lately. The serious illness that I endure has only become more complicated with new thyroid issues, new dental infections that need specialized care. The latter simply cannot be addressed for weeks because of the quarantine recommendations of our government (and governments around the world). There is very little that me and my beloved can do about the need to wait for medical care, even though this type of infection is known to worsen a person’s health. I also need to find a new clinic in our smaller town to provide the infusions that I receive twice per month; they have helped keep me out of the emergency room for over a year. But only essential and emergency care are now provided at virtually all medical facilities that are preparing for the pandemic. I understand these needs. I really don’t know if several hours per day of convulsive episodes qualify for essential and emergency care when no one has figured out how to treat or stop them yet. Specialized dental care twice in the past made a BIG DIFFERENCE, however. What shall we do?

I know that the Lord sees and grieves my suffering. I know that the Lord hears and grieves the suffering of people sick with this new virus and who are afraid of all the effects it has had on our society to date. I know He hears the cries of His children whether we have professed love for Him or not. You know that we are isolated and hurting. We do need you now. We are like your children of Israel wandering in the desert, needing to see the cloud over the tabernacle by day to know that you are near and what to do. With the presence of so much evil, the consequences of living in a fallen world, the events that puzzle us but you mysteriously have ordained, the leaders over us who shun you, and the tearing apart of these once United States of America, WE NEED YOU NOW. Might we catch a glimpse of Your fire, Your glory to help us, to help me carry on this night?

In the meantime Gentle Reader, please do take care of yourself and your loved ones. Here is my prayer for you as you seek the desires of your own heart. I submit to you that you will find everything you want and need in the person of Jesus Christ.

Thank you for being here with me. Godspeed one and all, JJ

From Wondrous Works Shop on Etsy

Start at the point of exasperation

When you reach the end of your rope then a new one must come forth

‘Cause everyone needs a hand to hold onto sometimes.

When all you can see is a dark web of experience, a broken road underfoot

Then we must cling to a crossbar strong enough to last forever.

When your body is broken, unreliable, and shaking with ravages of illness

There is no reason not to grab a hold of something eternal, transcendent, permanent, sublime.

When the pain begins as your eyes open and close each day, each night

Trust that these are a consequence of our fallen world, not your curse tender child.

When hopes get dashed over and over and over and over again

Re-examine what you are hoping for . . . the journey is alas, laced with gold.

When “challenges” plague you that would dwarf the average soul next door

Walk your own path with eyes fixed on your Maker Who is holding your heart.

When all hope is gone it is actually the perfect time Gentle Reader

To cling to our risen Christ, borne from an old rugged Cross, waiting in earnest to love you through it all.

When one day the suffering ends and your exasperation is but ashes on the dirty ground

Know that to finish well, not pretty or neat, is its own just reward. We’ve got this. He’s got us. And all will be made well.

Isaiah, 41:13, Lord holding us, take heart, trials, illness, disease, suffering, tragedy, Christian, Jesus, hope, enduring, reward

JJ Update

Bed bound, all of this beautiful day today.
Food is often triggering convulsive episodes so we are examining blood sugar issues with diet refinements and testing.
Had to take a steroid today to stop episodes; bad for me due to osteoporosis.
Having MRI workup in 6 days of a pancreatic cyst. It was identified 9 MONTHS AGO AND LOST IN THE FOLLOW-UP when diagnosed with hiatal hernia at that time. I found it when filing some of my medical records.
Nausea is lower after stopping a supplement that was reducing the episodes. Hard to choose between blood sugar stabilization with an unexpected side benefit of reducing episodes (with Biocidin) and the nausea it magnified. I went for less nausea hoping to figure out interim strategies to address blood sugar.
Waiting to be scheduled with an interventional gastroenterology specialist who happens to be the director of a large hospital cancer center here. One of the best in the Midwest.
Probably looking at an endoscopy ultrasound procedure thereafter; lab workup has started.
Hungry again . . . Afraid to eat.
Have volunteer responsibilities now and concerned about meeting them.

Please pray. This could be a new course of care that leads to a cure for my worst symptom. Or cancer. Holy cow! Having severe spiritual attacks.

Leaning on the Lord . . . Pic is from a better day 2 weeks ago. Our God reigns! And Yay God for that sweet evening with my hero, Steve!

Peomenade Park, Fort Wayne, IN
September 2, 2019