Tag: Lyme

Do you see me?

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I shook for almost 3 hours in that clinic recliner chair after a treatment that was supposed to help me.  Why did the nurse wait to answer the call light when I finally figured out what I needed to do?

treatment, recliner, hospital, bark a lounger, adjustable, IV infusion

I couldn’t speak properly but had to go to the bathroom greatly, knowing it would require transport via wheelchair and considerable physical assistance.  Why do I have to risk the episode worsening as I attempt to blurt it all out and even help operate the dang chair?

My left arm and leg were too weak and unstable as they seized with the rest of me so pivoting on a leg opposite the grab bar was the only way to land on the toilet dontcha know?  Why do I have to keep repeating that initiation of speech or movement makes the convulsions worse then be forced in a situation to have to do both anyways?

Each jolt repeated hundreds of times that night made the headache spike while wrenching my neck, spine, low back but alas I could do nothing to stop it or change its course.  Why did not voiding alleviate the symptoms like it had so many times before?

The infusions of fluids were supposed to help me treat the dysautonomia they said and address the dehydration but instead pushed me deeper into an exacerbation of my worst symptoms.  Why did not both doctors return my calls about my care that week, that day?

My beloved rescued me, drove me home, and helped me start the decontamination procedures to minimize the influence of exposures that could make the episode persist.  I feared falling in the shower after mumbling that I thought I could do it myself after he left.  Why do these heartaches keep happening to us?

I am still so very sick a year post IV antibiotics, genetic coaching, IV and compounded nutritional treatments, testing and treatments beyond that most experts would ever comprehend.  Why am I still at this level of strife FIVE YEARS down the road with no money for a big new direction, a possible cure?

The symptoms concerning me most recently are the ones where my cognition becomes dulled.  Why . . .  How in the world will we figure this out if my mind goes dim now?

I place this need to know “why” at the foot of my Lord’s cross who crafted this journey for me and my beloved for this time in our lives.  Thank you Jesus for Steve’s love.  I surrender my questions, my suffering, the thorns in my flesh, and the weakening of my mind to Your mighty hand with trust o’ God of the universe Who reigns!  Whether the battle is in the heavenlies or in my heart, my flesh, I let it all go to you now and ask for your covering my Jesus Christ.

God’s Word captures the submission of Job to the Lord in His time of suffering:

25 I know that my redeemer lives,
    and that in the end he will stand on the earth.
26 And after my skin has been destroyed,
    yet in my flesh I will see God;
27 I myself will see him
    with my own eyes—I, and not another. (Job 19)

2 “I know that you can do all things;
    no purpose of yours can be thwarted.
3 You asked, ‘Who is this that obscures my plans without knowledge?’
    Surely I spoke of things I did not understand,
    things too wonderful for me to know.

4 “You said, ‘Listen now, and I will speak;
    I will question you,
    and you shall answer me.’
5 My ears had heard of you
    but now my eyes have seen you.
6 Therefore I despise myself
    and repent in dust and ashes.” (Job 42)

Me too.  I trust that You always see me.  I will trust in you.  JJ

The Proper Blend

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Like a fine wine that melds flavors as it seasons in an oak barrel over time

Everything I do is a mixture of good and the other from meals to enduring “it” all.

My beloved likes his hot sauce, his cheesy toppings and bold flavors along the way

Mine’s gotta be subdued, seasoned with salt from the sea and little else but with ghee.

In the area of health my River Bear gets on the water even on a late wintry day

Where I rejoice if I can wander outside with the pup or try the more mundane of little things inside.

Steve puts up with so much:  dashed plans, travels alone, a romantic night turned into caregiving

Wifey-poo’s illness cancels plans, sours the embrace, changes everything we once held dear, I sigh.

There is no proper blend when dark symptoms fend off many moments of goodness again and again

We just Cape Diem my love, for we know not how long we have anyways as we pray and pray and pray.

Tis a lesson learned to live in the moment, capturing each breath expanded with gentle care

For we never know what may come before the movie credits roll . . . beyond the edge of what we once held so near.

Will deliverance come tomorrow or much later than that with this new thingy again to try?

Like the windows that saw the sun shine on them today, I will wait expectantly on my Lord with my Gentle Hero at my side.

Gyrations of health: a Testimony

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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

 

Digging down deep

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Beneath the wet earth from the late season snow

Chilled like the flavorless angst of my threadbare resolve,

Lies packages of hope:  those tubers, those bulbs yet asleep

Waiting for their time when the sun awakens their beauty in Spring.

Toil not, they do not, using their time of dormancy for its purpose instead

Such that life may burst forth with all that emerges from within

Stored in seasons past, full of sugar-coated memories divided between

The new members, the seeds that join miraculous transformation:  the celebration of life as it comes.

How may I be like the created things all around knowing I am so much more —

Use my time of spinning, of strife, of waiting, of failure whilst holding on for my day of celebration too?

For I am worth more than the fruits of the earth, the birds of the air soaring on high

The giant wonders of dark seas, the furry and creepy crawly ones all around

For they have no sense of wonder to bother to reason or ask the mysterious, the “why?”

They simply trust in the DNA of their making and bid their calling to each moment in time.

I may never know the answers to my questions, my quest to make sense of this suffering that goes on

And that must be good enough for me anyways to make the most of what I have been given

As perhaps a stewardship issue, a story told more in the heavenlies than for me here on God’s green earth to know

That someday, digging down deep in my own soul, my Lord will reveal His glory and I will be glader than the raven capturing her prey from above.

Until then, Gentle Reader, we two must trust in the plans set forth by our Father God

Knowing full well that more lies ahead than the lime green leaves birthed from the showers of April

We shall see God and He will love us now til the end of the age when we blossom to the fullness of our destiny

Everlasting, everbearing, ever singing praise to the Most High Who had our hearts all along dear one . . . He said so . . . the beauty from ashes came as we went on and believed.  JJ

Prickly pear cactus, Indiana, cactus, yellow, flowers, garden, gardening, Zone 5, garden themes, poetry

The Space Between

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Perhaps this was a movie title or that of an old business card

Ah, the lingering spaces between events good, bad, or ugly

Do hold some value despite their lack of measurement on scale.

I spend them wandering through the hallways of our home by day by night

From bed to couch to chair to bed, ahhhhh not much going on here

When sickness marks the hours wanting for an answer, something new.

Antibiotics are on hold from now til whenever as this past year ends

With little change beyond fewer hours of the worst of the hell, I guess

And the unwelcome addition of thirty-four new diagnoses to boot!

I have learned so much of what to do and what not to do as well

My stack of papers tell a long tale witnessed by ERs, a few friends,

A weary husband, and scores of medical peeps paid by someone to care.

My goal to find meaning in these places between crises, visits to hell

Has gone dry like a wellspring once filled with life now bone on bone dry

Stained with spent tears, one worn-out puppy, and a purse now threadbare.

The money went away with five years of living the, uh, alternative life:

Don’t call me “disabled” for there still is a bit o’ fight within me, down deep

To endure this long “medical leave” on my way to a makeover not yet revealed.

So as I breathe in the goo between the more defined places of this life

I take note that here is where energy can move along unencumbered

And one day may bring me to my own railway “Station” or at least my next big stop . . .

♥

Gentle Reader, I hope you will be there waiting for me, won’t you?  JJ