seizures – Page 29 – Jesus is for the Wounded

It’s more than a delicate balance

Published on July 10, 2015July 10, 2015 by Jesus is for the WoundedLeave a comment

As anyone who likes to (or needs to) cook knows, it can be a tough balance to make a recipe taste just right. The host of your fav cable cooking show says to add a pinch of salt and pepper as you watch her grab easily a fistful of seasonings. Ah ha! So that is why version mine comes out differently than yours! Just ditch the online recipe on her website and fly by the seat of your pants! Taste, taste, taste and make the dish all your own, eh?

I don’t tend to make meals using recipes anyways. With a limited diet and having to make a wacky version for me and a “normal” one for my beloved, I would become too frustrated trying to follow the masterpiece designed by someone else’s reality! I just start with what I CAN eat, add more salt with my eyes closed then put one of my go-to seasoning mixes on Steve’s version. It works for us. Well most of the time, that is! And when it doesn’t, that is what salsa is for right? (O.k. I know I have offended someone out there now!)

My health situation of late is kinda like the same delicate balance. Add too much zinc for too many days in a row or take a new supplement or med for more than 3 doses and whammo (!) I get burned at the “steak.” There’s little more than dog food left of me afterwards. Gratefully my Doc does exhaustive lab testing to try to coach me in the right direction. But now even labs cannot predict the outcome anymore. I seem to react to everything. It’s worse when the pharmacist of an independent lab starts making suggestions too. So I try this and that. Oh how I want things to work out well! So far, it has not.

I am my own worst enemy in these scenarios. The results aren’t even back yet for the female hormones that are at a mystery level since going through menopause. I went through menopause during the almost 4 years of this illness and these tests for me are way out of date. The significance of the hormones is that a goodly number of women (who have true epilepsy) have worsened seizures during menopause and others have reported a new onset of what is called “catamenial epilepsy.” While I do not think that I have epilepsy per se and all the fancy labs have supported this, I do find this course of study intriguing. I joined a couple of Facebook groups on the subject and have hunkered down into some new online research. Then of course I re-started a tiny bit of progesterone on my own to see what would happen. Yeah, I know that I should wait until the lab results are back in a total of 6 weeks. But heck, at the rate I have been going, 6 weeks means up to 210 more hours of convulsive episodes! Why wait? I am going to go through hell anyways . . . .

Dr. Erwin Leutzer of Moody Bible Institute teaches that, “when you are going through hell . . . DON’T STOP!!!” Oh yeah. That fits for me. Not sure what to do with some of the symptoms that are emerging though. Clearly this will need professional tweaking at some point! Do ya blame me for trying? What if I finally stumble upon the resolution to this nightmare? There are so many labs that are off now and the convulsive episodes have escalated to 4 hours or more most days, I just figured that it’s worth a shot . . . worth disrupting the status quo.

The decisions of life can be a delicate balance over here sometimes. Do we continue with travel plans when I am in the throes of chronic illness? For us, the answer is yes. We just adapt things a bit and get on down the road. Life goes on. In due time, if it is the Lord’s will, I am going to be well. In the meantime we will use the portable heater in the Tin Can Ranch (aka travel trailer) instead of the noxious propane mini-furnace so I can be with my beloved overnight at his kayaking competitions out of town. In the meantime I’ll freeze portions of meals to ease food prep when Steve needs to pitch in for me. In the meantime I will fold laundry when my brain stabilizes in the wee hours of the morning and scratch the ears of our pup who gets more fractionated sleep than I do. In the meantime Steve will head into work later to make up lost time and we will be grateful for his flexible employment. And so it goes, a balancing act on steroids that we have come to master, one ingredient at a time!

Gentle Reader, I’ll bet you understand the need for balance with the stuff of life. Let’s look together with gratitude that we do have some choices even in the worst of situations. For those who believe in the Lord, Jesus Christ, we know that all things, delicate and less so, will work together for those who love the Lord and are called according to His purpose. It’s His promise from His word in Romans 8:28. That is because He knows us and loved us before we were even born. He knows and cares for all of the details of our lives! (Psalm 139) And He knows what choices we will make. As for me, I will aim to make choices that keep me moving forward, aiming to win. Sometimes things will be out of balance for a time. Yet with my eyes fixed on Christ, leaning on His Word and the leading of the Holy Spirit I will run my race of life with endurance: endurance the produces hope (Romans 5:4) and endurance to finish well too! (Hebrews 12:1)

surf ski, surf ski racing, river racing, USCA, kayak racing, unlimited class, competition, drafting, Epic kayaks — My River Bear leading in a United States Canoe Association event last year. Gooooo Steeeeve!

Never sacrifice sweet victory for a need to stay comfortably in balance though. Attend to the tasks at hand with wisdom then get out there and LIVE! Do not stop! May we both finish well my fellow sojourner. The crown of glory awaits!

That is all. JJ

The One Who Leads

Published on July 6, 2015July 6, 2015 by Jesus is for the WoundedLeave a comment

outrigger canoe, tandem canoe, padding with your spouse, OC-2, tandem outrigger canoe, Hawaiin boat, HUKI, learning to paddle, learning to lead, learning to submit, follow the leader — Steve and Julie, the 4th of July on Blue Lake

Sometimes the person out front is the leader of the pack, charting a course for others to follow.

Other times, the one in back of you controls the rudder of your life and you have no other choice than to give into his lead.

The paddler beyond the stern of your boat may be drafting off your lead, riding your wake, resting to overtake the lead at any moment thus determining your fate.

But when matched up together in the same tandem kayak or outrigger canoe, it’s tough to see who is really steering the craft. Is it the gal in front? The guy in the back? The force of the wind shifting them about? The unseen forces of nature?

I submit to you that on the water, the average bloke cannot really tell what is going on unless you know a bit about the sport of paddling, the features of the watercraft, the paddlers therein, and the goal of the voyage.

Here we have dual controls on our tandem outrigger (OC-2), controlled by the pair of foot pedals in either the cockpit of the front or the back of the hull. We decided a long time ago that Steve would be situated in the back of the boat and control the rudder to steer us from there. My role would be to alert him to hidden rocks or logs and only change the arrangement in the event of an imminent crash! Even if he took a different line down a river or around a lake than I would, it would be his responsibility to guide the boat. And so it was for our first outing in the OC-2 since last year . . .

Blue Lake is one of the cleaner yet smaller lakes in Northeastern Indiana: about the same distance from our home as the 3 rivers that intersect downtown and south of us. It’s about a mile long and a few miles to paddle around, inside the shoreline. We decided that this would be the best place to go for a brief outing on Saturday. The water was cool, the air was warm, and the sun was setting a fiery glow in the distance. Fireworks spouted off all around us with smoke from these and summer cookouts that characterize the celebration of Independence Day in America. The haze reminded us of the battles fought for the freedom of our nation in 1776! This time the declaration on shore included everything cooked on the BBQ; the boaters under power and paddle on the water were friendly too. Even the dad of the family that lived across the street from the boat launch who has befriended my hubby during prior outings, stopped by to say “hello.” The best of our freedoms was all around us. No one cared who was out front, in control, or taking charge of anything. Everyone seemed out to have some good summer fun and that was all, including us!

I really enjoyed our 60 minutes canoeing yesterday. Both Steve and I prayed in thanksgiving for the chance we had to be together sharing an activity that has characterized much of our marriage these past 7 1/2 years. I joke that every summer I become a “kayaking widow” as Steve practices then races his surf ski in the northern Indiana circuit of the United States Canoe Association competitions. But I didn’t use to be so alone. Until the Fall of 2011, I usually went out with him in my own kayak and the Fort Wayne kayaking group on Tuesday nights. On the weekends I loved cheering for Steve from the side of the river for as many Saturday events as I could get out myself out of bed in wee hours of the morning to attend. He has continued to race all of our married life together, and race well. I wouldn’t have it any other way. And yesterday we were together again; last month I got to attend one of his races. Lord willing both will happen again next weekend at a new event-with-festival. Lord willing indeed.

The price to pay for participating in these events is very high. I go to them when there is a break in the convulsive episodes and usually pay my dues with bed rest and intermittent episodes the following day. This has been my routine for over 3 years. This past weekend was no different. And yet we still praised the Lord. Jesus Christ was the One who once walked on water, carried the apostles to safety in raging seas from shore to shore, preached from the beach to the multitudes, and created the beauty we all enjoy. He also led the two of us to a wonderful moment of recreation: just me and my beloved River Bear. I am grateful for this gift. Period.

I am also grateful for the man the Lord has designed in Steve. My Stevers waited all day long until I could leave the house after 6:00 p.m. to pack up the boat on the car racks and load up all of our supplies. He had cleaned his car for me earlier, “just in case” I would be able to make it. He changed up his usual workout once we were on the water to make the day meaningful for both of us. And he led us through the entire experience as if the day was just like any other: a warm summer afternoon on the water together in July. Oh how I love you my River Bear! I really don’t mind letting you steer us from behind. It really doesn’t matter who is in the lead all as long as we can be together again like this.

Place me like a seal over your heart,
    like a seal on your arm;
for love is as strong as death,
    its jealousy unyielding as the grave.
It burns like blazing fire,
    like a mighty flame.
⁷Many waters cannot quench love;
    rivers cannot sweep it away.
If one were to give
    all the wealth of one’s house for love,
    it would be utterly scorned. [Song of Songs 8:6-7]

So whether you are waiting for inspiration, the man in your life to make a decision, the Lord to whisper His voice into your darkness, or for the rushing waves of illness to calm down in your tender vessel: take heart. The one, the One who leads will take you through the right waters at just the right time in just the right way to get you exactly where you know you really want to be anyways. I don’t know if there will be fireworks to celebrate that moment in time like there was for me? I do know that there will be a celebration in heaven for the faithful who have waited upon the Lord who loves you more than you know.

And He will bring you to that special place, Gentle Reader, where the sailing will be Divine. Just look at how cool it can be! JJ

Who will carry me?

Published on June 29, 2015June 29, 2015 by Jesus is for the Wounded1 Comment

It’s easy to bemoan the slide of morality in the United States recently escalated by the legalization of gay marriage. What is natural to the human body has now been publicly adulterated by the unnatural. The institution of marriage, which was created by God, has been changed by a few willful and unlawful men who did not even create the institution of marriage. Alas another door has opened in our lives that will ultimately hurt everyone when his or her rainbow-colored eyes finally open to see it. But most of us will never see the damage coming until it is too late . . .

When the truth, the pain of what we have done to ourselves is revealed, we will mourn. Others will mourn the horror of what our complacency, our tolerance has produced. Further, things will go horribly wrong even for those who believe that free living is right: things that they could only imagine in a sex-slave murder mystery will come into their reality and hurt them too. And those of us who have attempted to shine a light or sound an alarm on the moral decline will realize that what we have tried to do could never be enough to change unbridled evil. Eventually, we all will grieve but for very different reasons.

So who will carry all of our tears? Who will carry your grief and mine? “Who” indeed.

boy and wheelbarrow, trees down, storm damage, carry, wheelbarrow, burdens, Lord carried me, Lord carried me, Footprints in the Sand — Chad Ryan | The Journal Gazette
Five-year old Braxton Davis joined the work crew 6.27.15 at Opechee Way and Nokomis Road, using his toy wheel barrow to remove leaves after a large tree fell in the front yard of his house at the Indian Village intersection.

The cute picture above denotes how we have trivialized the important issues of our day. The picture above denotes how we have traded our core values and beliefs for a picture of life that feels good in the moment. We have minimized the significance, the impact that our actions, our public statements, our private thoughts, the work of our hands can truly have in the larger picture of life. These are not a small issues. Eventually the magnitude and truth of who we are is always revealed. Eventually a tiny wheel barrow carried by a child that is supposed to help us feel good about hundreds of thousands of dollars of storm damage will be crushed by the tsunami of horror headed our way. Our world will never be the same for you and me beginning the events of June 26, 2015.

We cannot fix this. No one individual, you or me, can carry us through to a better future. No one: no President, no preacher, no crafty writer, no partner, no one can fix what is coming for us or carry our wheelbarrow of tears. We are alone to face the consequences of these actions. If we want the pain, the grief to stop then we will have to take our sorrow somewhere many of us have never gone before . . . But where?

We understand the dilemma inside our own home too, in another way. Last night was hell for me and Steve. In the middle of 3 1/2 hours of continuous convulsive episodes, I struggled to squeak out a request for him to carry me to the bathroom. I was also in the middle of a 24-hour urine hormone test procedure so imagine my shame in trying to figure out what to do when my hands or legs were not working right. Neurological collapse had settled in. Gratefully as soon as he got me upright and helped me with a sip of water, I could use my hands well enough to position the urine cup myself when sitting on the toilet. I was able to get the sample and dump it into the collection receptacle resting in the bottom of the tub next to the toilet. Steve then helped me back to bed just in time for the next round of head-banging, wailing, tears, and terrible pain. And so it went for the sixth night in a row.

I am grateful that when Steve is home, he is very capable of carrying me. He has done so a hundred times. He has held me through the ugliest of moments, fed me, clothed me, prayed, and artfully let his deft gallows humor fly at just the right moment in time when we both needed it! Then there were the thousands of times when he was not there and I still needed help. I needed to get to the bathroom but my legs would not move. My throat was parched from cries of sheer angst, hyperventilation, sweats episodes, and chronic dehydration. I wondered if my next breath would arrive or not. My tummy growled for hours and I could do nothing to satisfy the hunger. My brain became too numb to figure out what was in my ability to do or not anyways. Oh the neck pain from the seizing! Fearful thoughts, not my own, pushed into my mind by force of some electrical misfiring that goes with seizure activity. And I cried deeply, feeling alone.

In those moments, Jesus Christ carries me (John 16:32). I am not alone! Jesus Christ carries and equips Steve over and over again for the tasks at hand in our marriage (1 Peter 4:10). Jesus Christ will also carry those who do not know him whenever, wherever they finally reach out for help (Psalm 10:17). Our God, Jesus Christ, is worthy of our reach since He created us out of love: shown to all as He grieved bloody tears for our sorrow, our pain (John 11:35) that we endure in this life. He existed before the time, space, and material that characterizes our lives (John 1:1-4) and is the very reason that we are here. He loves us more than we can ever imagine and is always here for us, no matter what is going on around us (or within us!) (Matthew 28:20).

Further, we can never say that what freedoms we want, doubts we have about our lives, or the philosophy in our own minds will have anything to do with Who God is. God, the triune Holy Spirit, Father, and Son (Jesus Christ), is separate from mankind and is not subject to the constraints of this earthly life. Our ideas simply cannot match up. We will never fully understand Who He is with our finite minds so rejecting Him won’t get you anywhere worthwhile. The answer to our questions, our unmet needs in life is belief.

Because we are finite, we must place our belief in that which is infinite: true yesterday, today and tomorrow. The only entity that is infinite is God. He never changes. He is perfect, all-knowing and we are not. We can reach out to Him in with our tears, know that He cares (Psalm 139:17-18), know that He has our back (Jeremiah 29:11), and live on with hope for tomorrow amidst our trials, our heartache. It follows then that our victory over the heartaches of this life is in Christ alone: the Son of God. Jesus Christ, manifest in His Word (the Bible), reflected in His creation, and felt through the longing inside our hearts, is not bound by our limited view of the world. Jesus transcended this life when He died on the cross and rose from the dead. Jesus Christ will “carry” each of us through the mysteries of life to a better place when we place our trust in Him (John 3:16).

Our Lord Jesus Christ made the difference for me and Steve last night and a hundred other horrible nights. Jesus Christ will make the difference for you too in everything, Gentle Reader, whether you choose to believe in Him now or at another time. But why wait? Why not enjoy His transcendent peace, love, joy, hope, and more right now?

For the believer in Jesus Christ, it doesn’t really matter for our future, what is going on around us in the world right now. We will live infinitely longer in heaven with God than the time it takes to complain about a Supreme Court decision. Join me in doing what we can to love people, all people. Reaffirm in our minds that we ultimately place our trust in only one place: the Person of Jesus Christ. He is the One Who matters most. He is the One who will carry us from here into our blessed eternity with Him. And that is a celebration worth waiting talking about!

But, dear friends, remember what the apostles of our Lord Jesus Christ foretold. ¹⁸They said to you, “In the last times there will be scoffers who will follow their own ungodly desires.” ¹⁹These are the people who divide you, who follow mere natural instincts and do not have the Spirit.

²⁰But you, dear friends, by building yourselves up in your most holy faith and praying in the Holy Spirit, ²¹keep yourselves in God’s love as you wait for the mercy of our Lord Jesus Christ to bring you to eternal life. (Jude 17-21)

The Lord is the one who carries me for sure. What do you say we go together?

With love, JJ

The Night Watch

Published on June 23, 2015June 23, 2015 by Jesus is for the WoundedLeave a comment

And so the night watch begins

As my beloved tucks himself part way under the covers, the cool air circulates around him and our home.

He looks so peaceful as he collapses into bed,

Having worked the day long and again this evening to make things right with our world.

The pup slumbers on the floor behind me

With her own watchful eye as the big storm rumbles outside in the darkness;

Another night begins and I am hungry

The wretched episode and weathering inside my own body now behind me once again.

It’s a strange life, that is clear:

The promise of new treatments,
my meager attempts to go on . . .

Let me pretend I am doing something worthwhile

When my world stops shaking and I find you here, Gentle Reader, ready to make sense of it all.

Sometimes there is no sense to be made

We simply endure, do our due diligence to survive:

Touching something meaningful when the opportunity comes our way

Then letting it all go to the escape of sleep whether by night or by the dawn cometh soon.

Perhaps this night will bring fruitfulness

Maybe I’ll be able to write something of worth?

There is certainly much to do alone here with you as the keys light up and my mind slowly turns on;

My Lord is here with me so something good, something meaningful might happen yet this evening!

Since I cannot be sure but the time will pass anyways,

I better get something to eat before “dinner” slides into breakfast, hunger into weakness

Then maybe my brain will come back online too. If this is to be my shift I better get to my assigned duties of late —

If I am to be awake, the most of it I shall make again and again. Who knows, maybe something good may be too?

Yes, something good may be too. JJ

The Day is Never Really Wasted

Published on June 22, 2015June 22, 2015 by Jesus is for the Wounded2 Comments

Missing my Dad.

Closing my online jewelry shop.

Cancelling a dinner invitation for me with new friends.

Spending the morning and evening in bed with complications of illness.

Questioning the utility of a new treatment before it really has begun to make a difference.

Perhaps you can see where I am going with this? No where productive, positive, encouraging very fast. These are the kinds of days when I question the value of each breath (that almost stopped twice today). These are the evenings when I wonder why I try to plan anything away from our home anyways? These are the days that I cry a little more than usual. And these days are necessary, really, to grieve and move on.

When I worked as an occupational therapist in rehabilitation, we often told our patients that, “recovery is a jagged line.” Oh how I have found that to be true these past 3 1/2 years! Looking back to the beginning and middle of this period of time, there were many times when I am sicker than I am now. There were many unanswered questions, new treatments to try, expenses that exceeded our income, strains on all of my relationships, and lifestyle changes that seemed too much to bear. So many questions came to mind as the weeks extended into months and years:

I wondered if I could continue to get to know the gals I’d just met at my church or my husband’s adult children, make any new friends, or succumb to the ill-effects of isolation instead? How much suffering could my body endure without permanent damage to my brain, neck, back, or other bodily functions when the convulsive episodes were so violent? Would I embarrass myself in public, get into an accident in a public place, or be found on the floor some evening by my beloved husband (who was already stressed and sleep-deprived)? Why on earth did I have to endure such hellish nightmares, flashbacks, and heart-wrenching grief at this time in my life when I had worked so hard to become free of so much sorrow in my past? And most of all, would anything good come from all of this: would it be wasted time and effort after it was all over?

Some of these questions have been answered by now and some have not . . . yet. I have made many new friends. The process of getting to know my hubby’s children has been slower than I would have liked yet it probably is for the better; we are living a long-distance from all four of them which makes everything a little different too. My mind has actually become clearer with the extreme dietary measures, reduction in mercury toxicity/dental issues, and healing of my gut (since the brain and gut-health are related don’t ya know?). The physical consequences of illness will require some more treatment soon but at least my weight is stable and the overall deconditioning has still allowed me to perform most of my activities of daily living. Further, when I felt sick in public or driving down the road, I was always able to rest in my vehicle thus avoiding an incident, gratefully. These last two are amazing to me: the Lord’s angels must be protecting me when I am away from home.

Steve and I have found ways to cope with the nightly convulsive episodes, sudden physical collapses that require assistance with my self care, and challenges to our intimate life on occasion. It helps that Steve is wonderful! It helps that he relies on the Lord and fellowship with strong believers to see him through this season of our lives together. His faith strengthens mine too. Although we can’t be together as much as I would like to, it helps me to know that I can trust him and look to him for spiritual direction, spiritual leadership. This is God’s plan for the home, for marriage. And as that design plays out between us, I know that the Lord is strengthening me too.

The Lord has never left me or forsook my faith in Him. Even in near-death experiences, demonic attacks (and there have been more than I can count), and times of deepest despair, my Jesus has carried me through it all. The spiritual peace that developed certainly has served to clear my mind, bringing me to a place of clarity I had never seen before I got sick. Renewal of our minds is a gift and a promise only the Lord can give as we read the Bible. I am grateful for His work through this process.

I really don’t know if looking at the female hormone/menopausal connection with the onset of seizures (and its related testing and treatments) will be fruitful or not. Is it catamenial seizures? I do know that I am probably going to make some more new friends trying to figure it out! Some more new connections will also be made in the synapses of my brain as I study a whole new body of information. Letting go of my hobby business today and getting focused on a more professional venture will challenge these new skills, quite possibly moving me from this disabled state to one of productive living. Oh how I hope so! This incredible experience has inspired a new product that I invented and eBook that I am writing. That is cool, eh? Yeah God! Perhaps things will come together just as they need to and when the timing is right? This season of time will have served its purpose; it certainly will not be wasted. This Father’s Day will just be a microcosm of the larger picture with all of its days, its parts playing a role: good, bad, and ugly too.

And in the end I know that the good will outweigh the other two. How compelling of a story would I be able to write if everything was always hunky-dory? Nope. It would be boring. On the stage of life, we are to live fully no matter what happens to us. We are to live like the sign on the wall of the therapist’s office that I saw when I was searching for meaning in my life at just 24 years old:

Yeah. Evelyn at Catholic Charities had it right. And the gardener in me wasn’t even awakened yet when I read that banner! The motto of that poster has encouraged me over and over again, becoming the foundation of my life’s work as an occupational therapist and helping me to re-invent my career a half-dozen times. As a believer in the Lord, Jesus Christ, I can see that He is the God Who uses all things for His glory. Someday you and I will get to see how these gnarly threads of our lives have woven together to create a beautiful tapestry that characterizes the life of one surrendered to Christ. With that hope I can face tomorrow and all that it brings. With that hope I submit to the will of my Master Gardener, my Lord.

With that hope you can too, Gentle Reader. Bloom! With love, JJ