fibromyalgia – Page 6 – Jesus is for the Wounded

All You Need is Love

Published on April 1, 2014April 1, 2014 by Jesus is for the Wounded1 Comment

Sometimes you just need Jesus with skin on, ya know?

Tis quite humbling to find true love in the midst of the most wretched time of my life. Even the worst of the trauma of my childhood cannot compare to the wrecking ball-like experiences of violent, waking seizures every day. During the bewitching hour of night my beloved often lingers nearby, checking in periodically or lies next to me to warm my chilled, freaking out frame. Perhaps he has carried me to the bathroom moments earlier or fed me some water to drink in my listless state after an episode. And then comes the silliness that only a River Bear can muster in the midst of yet another crisis. Seriously! He finds a way to laugh in the midst of it all.

Sometimes you just need Jesus with skin on and I am exceedingly grateful love my Steve every day. Making his lunch bag for work or cooking dinner a few nights per week is my meager contribution of late. Sometimes I can do housework, grocery shop and laundry too; not so much lately. It doesn’t seem to matter to my husband though. He appreciates any of it and celebrates when I can get out and walk the dog or create a piece of jewelry instead of completing the chores. Peanut butter and jelly sandwiches seem to fill his belly just the same! What further amazes me is his compliments and words of encouragement when I am at my lowest. I have never known this much love from anyone before Steve!

To those Gentle Readers who are single: be the partner for which you seek and wait for the one who will love you above all else after the Lord. I found Steve after 47 years of living and after kissing a few frogs along the way! Oh well. Sometimes you can’t tell a prince from a frog until it’s too late! Yet when we trust the One who knows and numbers each hair on our pretty little heads, He will bring your night in shining aluminum*, or is that armor (?) at just the right time. The trials and adventures of life come alive when shared with your intended beloved.

I used to say that I could make a relationship out of anything. I was dumb and wrong. Settling for less only brings heartache. I now see too how the Lord empowers me to love Steve beyond my earthly capabilities and he must be doing the same for Steve as he loves me too. In doing so we are drawn even closer together. How does one prepare a lunch bag, clean up the kitchen at 4:00 a.m., and make it back to bed when sickly, nauseous, twitching in pre-tic episodes, etc.? (How does Steve work full time, serve and worship at church, attend to household tasks, and keep up with athletic endeavors after staying up late with me?) By calling on the Lord to add His increase, He brings blessings beyond the tasks at hand. As for me, on particularly bad days I don’t do much of anything. The look in my eyes is all I can give, to say how proud I am that my husband goes to work each day for us, or for me to muster up the strength to take a shower and wear the jeans he likes the best. It is enough. It is love.

Thank you Steve. Thank you Lord!

Steve and Julie looking out over Lover's Leap, Starved Rock State Park, Illinois — Steve and Julie looking out over Lover’s Leap, Starved Rock State Park, Illinois

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* The “night in shining aluminum” story stems from the theme of many romance novels: the dashing young man will eventually scoop the young maiden into his arms and carry her off into eternal bliss as the sun sets. I believe I had a similar experience the day of my move from the west suburbs of Chicago, Illinois 200 miles east to be with Steve in northeastern Indiana. We met on Yahoo Personals and had a fairy tale long distance relationship for longer than my Prince Charming desired. Each time we parted to make the long drive home he would tease me about running off to be with him in Indiana! The tell tale moment finally came on moving day in November of 2007. The movers had packed the 24-foot box truck with all of the earthly possessions from my beautiful condo near the Dupage River. We were standing in the parking lot about ready to go when he popped the question. Steve looked at me and said, “Julie I’m going to ask you one last time: will you come away with me to Indiana?” I jumped into his arms with a resounding “YES” and off into the beast of shiny aluminum we went! My prince had come for me at last . . . :J

The Waiting Game

Published on March 28, 2014March 28, 2014 by Jesus is for the WoundedLeave a comment

TREATEMENT UPDATE: The new doctor I saw on Monday ordered more tests. My treatment plan is thus delayed. My response to high CBD hemp oil waxes and wanes. At least it prevents seizure attacks most of the time when I am in a completely controlled environment and can arrest them some of the time when they break through. But if someone enters my bubble at home with but a speck of perfume or exposure to mold in a water damaged building then there are fireworks! So I’ve got three more weeks of guessing what the heck to do . . . Holding on and talking to the Lord a lot.

Or holding it? Gotta laugh too.

Flowers for Algernon?

Published on March 22, 2014September 24, 2022 by Jesus is for the Wounded2 Comments

Another temporary setback in my health tonight ended by a couple of drops of tea tree oil masking the noxious scent of perfume. I don’t do perfume very well and am grateful for this suggestion of a friend familiar with essential oils. Thank you Lord for Cindy and tea tree oil!

Sigh. How am I supposed to be around people when the scent of any products they might wear with fragrances can trigger seizures? I feel like a prisoner in my own home. If I linger away from my cocoon then I am at risk. And if a guest visits our home not wearing perfume but carrying a coat or wearing clothing scented from another day, BINGO. I get sick.

I endured three major setbacks including last night and three other times this past week. Setbacks that is, from significant improvements that came from taking high CBD hemp oil. I was enjoying some sweet moments of near-normalcy! At least the overall episodes are shorter. I guess there is something else going on that is preventing the treatment from holding . . . .

Is it diet? How can it be when consuming a strict Candida, mold-free, and low oxalate diet? Could it be methylation or residual biotoxin illness issues? Perhaps and I’ll be pursuing these at a new clinic next week. Is neuro-Lyme the culprit after all and I need to get back into antibiotic therapy? The Rife machine made me worse. I’m not so sure about Lyme disease anymore as my genetic markers are more significant for mold illness than Lyme disease. Still: who knows?

In the 1966 novel Flowers for Algernon, Daniel Keyes portrays a mentally disabled man who gains intelligence after being selected for an experimental brain surgery. The surgery was shown to be successful in a laboratory rat whose intelligence increases 3x after the procedure. Charlie, the main character, undergoes the procedure himself as the story follows him from his menial janitorial position to falling in love with one of the teachers at the school in which he works. Charlie quits his job about the time that the rat begins to decline. The improvements did not last. Charlie buries his little friend in a cheese box in the backyard near the close of the story.

I worked on the set of the stage play of Flowers for Algernon at my high school. The sorrow of the scene pictured above when played out even by a wiry teenager was very emotional for all of us backstage. I will never forget it. For me it represented finding hope then moving forward in life with new skills and possibilities. My life was already very painful at age 15. The story touched my heart as we brought it to life for our peers and parents. My tears had no where to go as I stood in the dark backstage, waiting to bring out props for the next scene. When I got home the lockdown continued in the chaotic and unsafe environment of my childhood. My sorrow was locked away for many years. After much healing and decades of living, the Lord brought back this particular story to mind recently with the frustration of the illness that I am enduring: I came upon a reason to have hope from seizures only to have that hope dashed against the wall. Again. It feels like death.

Sadness fills my eyes. Of course I want to be well. Every time I grasp for air, stabilize my neck for fear of my head breaking off, emit some guttural utterance from the forceful involuntary movements of every appendage in rotation or unison from a seizure attack I become very aware that I could die from them. I stare blankly into space or hold my eyes closed to keep the room from moving. Keeping my eyes open brings dizziness and nausea; keeping my eyes closed brings increased fear and a lost sense of time. While still awake I sometimes can talk. The words are strained and speaking (like trying to move) runs the risk of exacerbating the attacks further. If the episode goes on too long then neurological collapse follows. I either have to lie motionless until function returns or my beloved Steve transfers me out of bed and carries me to the bathroom or bed. This more severe level of seizure occurs late at night when he needs to be getting ready for bed to be able to work the next morning. It’s my private hell. It’s his private hell. It’s the private hell on earth that is our burden to endure at this time. (See my non-epileptic seizure video for more information.)

To see a loved one losing the battle over illness, over injury is one of life’s greatest sorrows. Even for a Christian, experiencing it yourself will challenge everything you know about grace, endurance, meaning, and more. Flowers for Algernon is a fictional tale about a rat and a man who found answers but those answers did not last. The story touches a cord deep within me. Oh to taste the goodness of life and have it taken away! I have searched for goodness for a long time. One of the great opportunities of this life is to seize the sweetness that abounds, hold it lightly as it shines for a time, then let it go gracefully when we must either move on or the script of our lives writes it off the page. It must be the Lord’s plan but why? Such answers often never come. Moving on can be the reward for grieving well. Then there’s the fruit of living with loss that is ongoing: when the disappointment never really goes away. This is when you really know who you are. This is when you really know Whose you are. Paradoxically speaking, it can be the time when you are truly ALIVE.

I am a child of the King held in the shadow of His wings, His loving arms just like I quoted yesterday in Psalm 139. This night I bring forth an invitation for my Lord to:

²³Search me, God, and know my heart; test me and know my anxious thoughts. ²⁴See if there is any offensive way in me, and lead me in the way everlasting.

13 For you created my inmost being;
you knit me together in my mother’s womb.
¹⁴I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
¹⁵My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
¹⁶Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

My Lord sees me! Even so, this illness is one of my greatest mysteries from all of the events that have transpired in my life. In the past my Lord has graced me with seeing some good come from the evil, some divine plans that have emerged from the chaos through which the deepest desires of my heart have come true. I will hold onto His words that:

¹⁷How precious to me are your thoughts, God!
How vast is the sum of them!
¹⁸Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.

At every turn, with each moment of sorrow I no longer ask:

⁷Where can I go from your Spirit?
Where can I flee from your presence?
⁸If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.

Indeed you have led me through it all. I can trust from Psalm 142 that:

³When my spirit grows faint within me,
it is you who watch over my way.

And as it reads in Psalm 100 we will all:

³Know that the Lord is God. It is he who made us, and we are his; we are his people, the sheep of his pasture.

We will:

⁴Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. ⁵For the Lord is good and his love endures forever; his faithfulness continues through all generations.

Rest will come for you, Gentle Reader and me too as we read in Psalm 121 that:

⁵The Lord watches over you—the Lord is your shade at your right hand; ⁶the sun will not harm you by day, nor the moon by night.

⁷The Lord will keep you from all harm—he will watch over your life; ⁸the Lord will watch over your coming and going both now and forevermore.

With that I bid you good night. I’ll be fine. Join me in trusting the Lord that you will be too, eh?

Looking for significance

Published on March 21, 2014March 21, 2014 by Jesus is for the WoundedLeave a comment

Psalm 139 (NIV)

For the director of music. Of David. A psalm.

¹You have searched me, Lord, and you know me. ²You know when I sit and when I rise; you perceive my thoughts from afar. ³You discern my going out and my lying down; you are familiar with all my ways. ⁴Before a word is on my tongue you, Lord, know it completely. ⁵You hem me in behind and before, and you lay your hand upon me. ⁶Such knowledge is too wonderful for me, too lofty for me to attain.

⁷Where can I go from your Spirit? Where can I flee from your presence? ⁸If I go up to the heavens, you are there; if I make my bed in the depths, you are there. ⁹If I rise on the wings of the dawn, if I settle on the far side of the sea, ¹⁰even there your hand will guide me, your right hand will hold me fast. ¹¹If I say, “Surely the darkness will hide me and the light become night around me,” ¹²even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.

¹³For you created my inmost being; you knit me together in my mother’s womb. ¹⁴I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. ¹⁵My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. ¹⁶Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. ¹⁷How precious to me are your thoughts,^[a] God! How vast is the sum of them! ¹⁸Were I to count them, they would outnumber the grains of sand—when I awake, I am still with you.

¹⁹If only you, God, would slay the wicked! Away from me, you who are bloodthirsty! ²⁰They speak of you with evil intent; your adversaries misuse your name. ²¹Do I not hate those who hate you, Lord, and abhor those who are in rebellion against you? ²²I have nothing but hatred for them; I count them my enemies. ²³Search me, God, and know my heart; test me and know my anxious thoughts. ²⁴See if there is any offensive way in me, and lead me in the way everlasting.

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Nuff said. JJ

He’s Still on the Line

Published on March 9, 2014March 21, 2014 by Jesus is for the WoundedLeave a comment

Long after my beloved is asleep

Devastated by unanswered prayers and sorrows so deep

I lie awake my body tossing, trembling

Such are the storms of night: unending.

From wherest does my help come from

When prayers bring no relief with each day’s sun?

The hopes are dashed, the relief doesn’t last

And the damage, the pain continues no less.

So many nights where nightmares became reality

So much suffering sends off all memories of normalcy.

People leave your life even when they like you

For fear, for powerlessness, for horror of what is your truth.

New sojourners may come only to wallow awhile with you

Should you happen to find a way out they will be long gone too.

Choose wisely your inner circle my friend

Make sure the Lord is closest-in when the nightmare ends.

He will never leave: His love will fill the gaps

Where others must fail, supernatural strength is what lasts.

You can call Him near, like a salve to the wounds of war

Then peace will come . . . you can carry on from there, dear one.

Now here’s a love song that reminds me of these times with my beloved Steve: he holds me close while the Lord is still “on the line,” listening to our hearts and holding both of us near to His own. From a simpler time:

Still on the Line