non-epileptic seizures – Page 6 – Jesus is for the Wounded

Home of the Brave

Published on July 6, 2014July 6, 2014 by Jesus is for the Wounded4 Comments

Yesterday on the Fourth of July we celebrated the independence of America from Great Britain. Among many patriotic sayings is a phrase from our national anthem: Francis Scott Key’s Star Spangled Banner:

O say does that star-spangled banner yet wave,
O’er the land of the free and the home of the brave?

Indeed this song that was sung while waving our American flag is still a symbol of heroism in the United States of America. And yet I submit to you that within the hearts of the great and mighty that exude bravery are the once ordinary citizenry that the Lord rose up for great deeds. Those neighbors, husbands and friends chose to align themselves with the God of the universe who reigns supreme and will come again for His own. Similarly if anything I write here telling my own story reflects bravery then it is a reflection of those everyday heroes in my life that hold me up as well: many more than I can list here. Allow me to share with you.*

*A dear friend, Cindy, who checks in on me regularly despite her busy work schedule and home life. From her I learned to de-mystify alternative cooking for health (a task which consumes much of my waking hours these days!). Canned coconut cream from a downtown Asian food market is my new delicacy and gratefully it goes with everything. She’s probably the best resource person I know for local health and food stuff, is extraordinarily encouraging, and has a heart bigger than her petite frame. Love you girlfriend!

*Three regular readers of this blog who graciously let me know they are out there from time to time: Jennifer, Sherry, and Amanda. Some may say that it is not a real relationship when you meet a person online and don’t have any face time with them. I disagree. After all, I met my husband online via Yahoo Personals many years ago! And we are living happily ever thank you very much after having bridged the gap from anonymity to familiarity. Yes: very familiar indeed! I appreciate the prayers, sharing, overcoming spirit, and support of these three lovely ladies in their own heartfelt blogs. Amanda generously read and reviewed my first eBook last year. Thank you ladies! Find them at:

My Color is Lyme

A Labor of Love

Amanda Lannon

*My brother and his fiancé, Mike and Lisa. My brother had a severe stroke 3 months ago and was subsequently dumped in an inner city nursing home because he didn’t have insurance. Together they are navigating the difficult processes of securing Medicaid and Veteran’s Administration benefits. The paperwork, dead ends, delays, and frustrations are intense as time passes without comprehensive medical care or ongoing rehabilitation. While our conversations about all of these are certainly lively, I am impressed by my brother and Lisa’s overall prevailing spirit. Mike is looking forward to the day when he can serve others in a similar situation possibly as a dog handler in a pet therapy program. He is delving into the Word of God often now. Lisa is fulfilling well her new role as Guardian despite being way out of her comfort zone. These are good things. I’m proud of you both!

*My husband Steve. The love in his eyes for me never changes whether he is carrying me to the bathroom (due to daily episodes of neurological collapse) or showing me how to shoot a pellet gun at an empty gallon jug of orange juice. He may not have had enough sleep for the previous four nights in a row and yet his love never changes. He is my Jesus with skin on and greatest hero on this earth. I love you River Bear!

*The Lord, Jesus Christ most of all. When I found myself single at age 45, the Lord had become my Heavenly Husband and everyday companion. He had to become real to me to fill the painful void leftover from my estranged ex-husband. My Jesus also showed me the once empty places in my heart designed just for Him then filled them completely. I know that I am never alone. Ever. He is the great I AM, worthy of praise, and a warrior for the cares of our days. No matter what comes in this fallen world or how wretched, He has overcome all of it. Those of us who believe in Him through a personal relationship with Jesus Christ will be saved and spared any more suffering when He comes again for His own. The Lord is the ultimate hero in which we can place our lives, our confidences. Every good thing and the bravery needed to face these challenging times comes from the one true God. In the shadow of His wings I am comforted, protected, find rest.

For the nation of Israel, into which we believers are adopted as sons and daughters of the King, we find our freedom, courage to go on, and rest in the Lord. It is the hope of my heart that you, Gentle Reader, will find these great gifts in the person of Jesus Christ too. In Him we have the greatest of heroes: brave beyond compare. Now that’s a holiday worth celebrating today and every day. Bang bang!

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Psalm 147 (NIV)

¹Praise the Lord.

How good it is to sing praises to our God,
    how pleasant and fitting to praise him!

²The Lord builds up Jerusalem;
    he gathers the exiles of Israel.
³He heals the brokenhearted
    and binds up their wounds.
⁴He determines the number of the stars
    and calls them each by name.
⁵Great is our Lord and mighty in power;
    his understanding has no limit.
⁶The Lord sustains the humble
    but casts the wicked to the ground.

⁷Sing to the Lord with grateful praise;
    make music to our God on the harp.

⁸He covers the sky with clouds;
    he supplies the earth with rain
    and makes grass grow on the hills.
⁹He provides food for the cattle
    and for the young ravens when they call.

¹⁰His pleasure is not in the strength of the horse,
    nor his delight in the legs of the warrior;
¹¹the Lord delights in those who fear him,
    who put their hope in his unfailing love.

¹²Extol the Lord, Jerusalem;
    praise your God, Zion.

¹³He strengthens the bars of your gates
    and blesses your people within you.
¹⁴He grants peace to your borders
    and satisfies you with the finest of wheat.

¹⁵He sends his command to the earth;
    his word runs swiftly.
¹⁶He spreads the snow like wool
    and scatters the frost like ashes.
¹⁷He hurls down his hail like pebbles.
    Who can withstand his icy blast?
¹⁸He sends his word and melts them;
    he stirs up his breezes, and the waters flow.

¹⁹He has revealed his word to Jacob,
    his laws and decrees to Israel.
²⁰He has done this for no other nation;
    they do not know his laws.

Praise the Lord.

My Goal

Published on July 2, 2014 by Jesus is for the Wounded3 Comments

From Bible teacher Kay Arthur on Facebook yesterday:

“I have fought the good fight, I have finished the course, I have kept the faith; in the future there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day; and not only to me, but also to all who have loved His appearing.” – 2 Timothy 4:7–8

You are an ambassador for Christ, pointing others away from things which are seen (the temporal) to things which are not seen (the eternal). So take courage, valiant warrior. Fight the good fight of faith, for soon it will be over and you’ll be on the Victor’s side, with the King you represented.

Will you be able to say as Paul I have fought the good fight? Or will you stand ashamed in His presence?

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Thank you Mrs. Arthur. I will stay in the fight! JJ

Inside my heart

Published on June 30, 2014June 30, 2014 by Jesus is for the Wounded3 Comments

If a heart weeps for all that is gone

Must it place value in only that left behind?

If a moment in time is all that we have together

Will you remember me when your last breath reminds you there is none left?

If a baby bunny can nourish itself from my well-tendered garden intended for me

Could the disease inside of me eat away at my strength til there is none left to redeem?

Yeah that last one doesn’t encourage me much so I better stop right there. I’m struggling to make sense of the 12 hours of seizure attacks that ended yesterday. Periodic re-occurrences continued of course leaving me afraid to go to bed whenever I got brave enough to go to bed. Wretchedness with writhing, head-banging, moaning, and more greet me in the first stages of “sleep” every night. Make sense out of that one! These episodes make me suspicious of anything that might trigger them. Inside my heart I am angry, I am hurt. I am exasperated. I am . . .

I am in need of renewal inside and out. Where are you Lord? Fill my spirit with your unending grace. Please make your presence known such that I might endure, recover from this hell. I submit to You my king. There is none like You. For your glory. Amen. JJ

Puffy white clouds and 5 sparrows

Published on June 22, 2014June 22, 2014 by Jesus is for the WoundedLeave a comment

⁶Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. ⁷Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows. Luke 12

At first it looked like a gentle breeze flowing through the branches of the variegated dogwood bush outside our bedroom window. Puffy clouds drifted past the backdrop of the truest “sky blue” you could desire on an early summer afternoon. Such a simple scene, peaceful too. Then again the rustling appeared to come from below my view. Was there, wait, yes maybe there’s a little critter in there moving the branches about? And lo there she was: a lone house sparrow spritely jumping about within the leaf cover in and out of my view just a few feet away. Better not move a muscle or I might disturb the work of my feathered friend. Does she know that I could almost reach out and touch her marbled wings if the screen window didn’t separate us, didn’t provide secluded freedom for your Saturday play . . .

The little one flew away as my gaze returned to the light blue walls next to the bed inside the window. Maybe if I waited just a little longer another visitor would appear? To my delight the green-with-white birdhouse was rustling again from the top, the bottom, and even just beyond my view! Let’s see: there’s one, two, three . . . a fourth appeared and darted deeper into the cover of leaves as a fifth little birdie perched right in front of me too. Silly little one. He began preening his ecru-colored chest feathers without a care in the world as the branch bobbled up, down, and all around. He reminded me of my brother’s childhood parakeet, Perky. How they flex their necks so steeply to reach the soft feathers that form a collar of fluff I’ll never know. Such a curious, skittish, carefree creation indeed. Then in a matter of a few seconds, they all flew away . . .

I was alone again. Maybe I could try to move my head and adjust the comforter covering my chilled shoulders? Yes, that’s good. But to move my legs and arms was not to be just yet as my attempt to do so triggered another mini seizure attack episode. Sigh. I thought I would be recovering by now. Not so. Oh well, when my husband comes back I’ll ask him to bring me the lunch I had made myself earlier and put into the frig in case we were to go out on our tandem outrigger canoe this afternoon. What a nice treat I thought it would be to have something made ahead of time that fit my special diet and tasted yummy too. Not quite. Gratefully it wasn’t too long before he returned to check on me, brought me the container of rice paper finger sandwiches and fed me several bites, one by one. Then he put the bicycle water bottle to my mouth so I could sip some water and wash down the food sticking to my throat as I lain sideways on the bed. A few bites, a long sip, a few bites, a long sip. He has this routine down pretty well by now. Thankfully these complete neurological collapse episodes only happen every 10 days lately. They used to be every couple days . . .

In time my strength returned and I was able to put a pillow under my own head and feed myself. Unfortunately something triggered a major seizure jolt when my beloved returned, setting me back again for awhile. He was sitting close to me and I suddenly needed some fresh air from outside the window. Stevers obliged then left me alone again to recover per our routine for these sort of things. Again I revived. Eventually I was able to weakly get out of bed and start to put on some clothes. That’s a nice thing to do after a shower at 2 in the afternoon. I was feeling a little funny lying there naked rolled up in the comforter. Oh well. It’s the best I could do after beginning to collapse in the shower an hour earlier, struggling to dry myself off, and Steve helping me lie down as it appeared I would be falling over any moment. Flash forward almost two hours as the episode was resolving I was grateful to be able to move my left arm again. Looks like I would be o.k. albeit shaken for several more hours anyways . . .

Sitting outside in the sunshine helped me regain my strength. Of course I had another one of my low oxalate snack concoctions (white chocolate!) and a refill of cool water in my trusty Summit City Bicycles and Fitness water bottle. Little did the guys at the shop know how helpful that bottle had become when I needed a special flow-control mouthpiece to refresh me when in bed, not on the Fort Wayne River Greenway! Maybe someday soon I’ll get back on my bike. I am grateful to have had a test run of two miles earlier this Spring; I should be able to repeat a short ride on a better Saturday afternoon really soon, Lord willing. How hard could it be to peddle a few miles? Well anyways sitting outside on our patio later this afternoon with pretty gardens all around me and the sun still shining brightly overhead did me a world of good. The puffy white clouds still filled the sky and I could hear sparrows, robins, and more in the distance. I got up to pluck a few weeds, pick a few radishes, tinker here and there before returning into the house. Perhaps my beloved would understand that this day would be better spent at home than paddling on a lake somewhere? Change of plans. Enduring these kinds of afternoons together makes it obvious what we should do, more than words can ever say . . .

The rest of the day was decent as I prepared a nice dinner and some food for tomorrow in case we are able to reschedule our outing on the water together. I do try to be hopeful, eh? As most Gentle Readers would recognize in this blog we tend to live our lives over here a bit spontaneously: making plans more at the last minute, in the afternoon or evening, and after checking the weather report/Julie’s snack supply/whatever we can reschedule to be able to get away . . .

This evening? Not so nice. We are just not sure what is going on with these wretched evening episodes again. After a full year of 1-3 hour episodes virtually every night after dark and up to 30 minutes most mornings, you would think one of these specialists I’ve seen would have figured it out! Yes, my melatonin level is off the chart and melatonin levels change at night. I am getting out in the sunshine just about every day, exercising at night, avoiding foods with tryptophan (that tends to elevate melatonin) and more per my internet research on the subject yet the excess must be persisting. (Labs to follow!) Then my new biotoxin doctor laid a good one on me yesterday, saying that if anyone could figure out what to do IT WOULD BE ME SINCE I KNOW MY SITUATION THE BEST. Whaaaat? Why do you think I pursued your clinic out of State? I was hoping YOU could figure it out! Even my brilliant functional medicine doctor in addition to your brilliant functional medicine colleague have largely set me adrift. Now you are saying since I cannot tolerate Dr. Shoemaker’s biotoxin protocol that you cannot help me either? If you think I was able to figure this out would I be calling you? Geez oh man. Lord, come what may . . .

Back to the story of the bird in the hand is worth two in the bush OR wait a minute: there aren’t any birds here right now since it’s after 4 in the morning! Yes, I’m back to my late night schedule again. Let’s see . . . perhaps Luke 12 can remind me that just as the Lord provided me a sweet distraction of His delightful creation in my time of distress, He cares for me and for Steve in our times of distress too. He has provided for our needs despite the incredible expenses, sustained us during multiple special events when extraordinary measures were needed to keep me as safe as possible, and granted me the time and space to get well when I cannot work. I am grateful for my incredibly loving husband, a pretty home and gardens to enjoy when I cannot go out, and sparing of my abilities to think take care of my basic needs. Sometimes I need to wait for the Lord’s timing on some of these things which is o.k. too. I have learned to appreciate blessings in smaller packages with gratitude as they present themselves each day . . .

So I choose to take to heart His statement, His promise to care for all of the details of my life. He knows all about what is happening over here and desires for me to be courageous, not afraid. He has laid it on my heart that He has a plan and a future for my life (Jeremiah 29:11) and that nothing will separate me from Him or His will (Romans 8:38). I get this. Perhaps it’s why I don’t spend as much time crying anymore when the wretchedness comes. Instead I’ll say,

³Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, ⁴and endurance produces character, and character produces hope, ⁵and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5 (ESV)

With the lightness of heart shown to me by my Creator God this afternoon in my time of need, I’ll take the last word of the paragraphs granted by His grace and noted above:

This new day will come anyways, and no matter what may come or others may say, I will find a way to play with lightness of heart in celebration of the One who goes before me and will never go away!

Thank you Jesus for your Word, for your gift of words. Thank you for helping me get through that to which you have called me and should any good shine through may it be for your glory Lord. If it is your will I ask for your healing mercies and a time of blessing. I lift up my husband (Steve), and my brother (Mike) too for your anointing and blessing. If there is anything hindering our walk with You, please guide us, restore us through your Holy Spirit so that we may delight in sweet fellowship with you all of our days.

In Jesus’ name I pray. Amen.

The Sequel: Same story different day

Published on June 14, 2014June 14, 2014 by Jesus is for the Wounded7 Comments

Don’t you just love a good movie? The kind where you cannot predict the end until it ends or one where you find out what happened to the characters from the first of the series? Yes, everyone loves a good story with a happy ending. As for me, I’m just glad for happy moments!

I decided that it was time to update my video log of the most challenging aspects of the illness I am battling. Included in my “sequel” are some photos of happy moments and some notes meant to be of encouragement at the end of the story. Overall I admit that it’s kind of tough to watch. Sometimes my beloved, Steve, and I (in our attempts to cope with this daily saga) get into a numbing routine where I go off into a back bedroom for a wretched episode then he comes by later to check on me. I’m safe in bed: I won’t fall out or anything like that. He prays as he endures the horrifying vocalizations echoing throughout the house, knowing that there is virtually nothing he can do to lessen the burden. We simply ride it out until the next one comes along, whenever that may be.

Gratefully we have discovered some things that consistently trigger the seizure-attack episodes or make them worse. We don’t do these things where possible! I mean that with nine gatherings last week in celebration of two weddings it was pretty tough to eliminate all extraneous factors. We did our best. I made it through five events relatively o.k., was Skyped into another, left two early, skipped a reception, and was carried away from the second to last event after the introduction of the happy newlyweds. Not bad for a massively ramped up schedule and for someone battling Chronic Inflammatory Response Syndrome. Or is it Lyme disease? Biotoxin illness? Non-epileptic seizures? No one really knows for sure.

So here it is. No popcorn needed. A tissue might be worthwhile. All prayers are welcome. I am looking forward to the day when this illness is resolved. In the meantime I stand on the Rock of my salvation, trusting in my Lord and Savior Jesus Christ to go with me and deliver me in due time. One day in this life or in heaven, I WILL BE FREE. It’s the promise in which all of us who call upon the name of the Lord can rest. Thank you Jesus for your amazing grace.

Time for a nap! J