Time to focus

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Sick and tired of being the same

I digress into another rant . . . or shall I?

Would that honor the Lord who has sustained

Delivered me from near-death and brought me to you?

Oh if there could just be a happy ending already my dear

Would I still angst over my words or lightly dance over the keys?

These are questions that will not be answered this night or even the next

As my beloved returns home to my side from his travels, refreshed from lack o’ drama.

I must find some joy to carry me out of this funk for the path to recovery is becoming clearer

Glimpses of what may be come through the struggles amuck and late night appointments with my Doctor who works too much.

But is it more than I, just wanting to be well?  I think not for the rewards for victims are slim:  our fellowship better not be tainted by our woes!

Would you and I be friends if it weren’t for our life paths diverted?  Probably not so let’s not spend time there, just trust we were meant to be here now.

And I thank you for carrying me when I could not stand, liking my words when their worth eluded me in the dim of night, listening when most were asleep.

It is time to focus on the prize coming into view:  this possible final leg of the race that will take all my strength as Mr. Herx clears the debris that soured my inner places.

I might just win.  This life season just might end.  Stay tuned, Gentle Reader.  Please pray and I will do the same.  Of course you know me all too well:  I’ll be sure to letcha know…  JJ

Binoculars, garden, view, focus, Christian, birdbath, flowers, iris, landscape, trees, scene

 

Into the clearing as the storm wanes

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Psalm, Psalm 107:29, waves, Bible, storm, Jesus, calms the sea, hope, trials

The coming day after the darkest of nights

May be the one that redeems, the one where at last there is light.

Never a guarantee accompanies each sunrise

That moments later I will live and breathe without compromise.

The seizing of my being, the cries of despair

Have gone on too long little Julie:  even my bigger self can no longer repair,

The damage, the trauma, yes that goes beyond me

My Lord holds those tears that fill the seas of this earthly iniquity.

But one day I will be whole as He promised, oh yes He did

Joy replacing all the sorrow and where life will be just right, just as He said.

If next week brings some answers then so be it too

I do have wee bits of hope for some sleep now leaves me more rested, anew.

My brain can handle more of the stuff of life these days

With the exception of the medical provider’s drama where I have to focus the way.

I shall trust in my Savior whether or not we achieve the goal

Even if the storm inside wanes incomplete, in my spirit I shall always remain whole.

For my Jesus made me just as I am:  Just Julie, your friend

And you too Gentle Reader:  in His image welcome at His table now and til the end.

Won’t you dine in His presence with me unto glory eternally(?)

If we but believe the heavenly realms shall always be in the clearing for us to see!

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Yes, Ima gonna hang in there a little longer . . . You do too, k?  JJ

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Dealing with the trauma of illness

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Not that I have a total handle on this topic or anything but hey, I have learned a few things worth sharing . . .

Every day for over 5 years I have suffered waking seizure attack episodes of varying duration and intensity.  For over a year (ending last year) they averaged 2 to 5 hours per day!  At least once per month they would spike up to 12 hours on and off in a single day, sometimes requiring an Emergency Room intervention.  I have been to 3 different emergency rooms a total of FIFTEEN TIMES including once by ambulance.  After nearly a year of IV antibiotics for chronic Lyme disease these episodes are generally less than an hour per day now with some positive changes in triggers and patterning.  Significant testing and other treatments, research, and patient “networking” remain my primary occupation.  I am grateful for the improvements that have come including overall less pain from the repeated physical trauma of “head-banging” and wretched writhing movements (thanks to  periodic intervals of physical therapy and periodic chiropractic adjustments).

The journey is hell at times.  At my worst times I have questioned if I could endure this level of suffering one more moment.  My breathing has stopped numerous times and there has been one significant near-death experience with visions of “white lights.”  I have had to pray many times for the Lord to give me the strength to get to the bathroom when alone during hours of convulsive episodes.  Every type of healthcare provider I have ever seen and most close friends and family has witnessed them.  My husband is a saint, having cared for me often late into the night then getting up and going to work the next day.   A total of probably a hundred times he has had to carry me across our home when I could not walk, feed me, take me to the bathroom, assist me with bathing, take me to the emergency room, run urgent errands, and the like as my primary caregiver.  Probably a thousand times he has volunteered to bring me some type of “rescue remedy” to attempt to get the seizures to stop (generally at night or upon waking in the morning).  He never complains.  He is my hero for sure.

In other blogs you will read about all the avenues we have pursued to try and get me well:  chronic Lyme disease, heavy metal detox, mold remediation, obscure infections, dietary restrictions, neurology workups, dental issues, nutritional deficiencies, epigenetic testing and coaching, electrosmog, gut issues, yada, yada, yada.  I spend hours per week researching, managing my healthcare, dealing with extreme mold avoidance and other preventative strategies, and accessing my support system online or by phone.  Church worship is also online to minimize triggers from environmental stimuli, however this strategy also increases my social isolation.  Trips away from home are generally focused on essentials during my best times of day and occasionally with transportation help from a couple of sweet gals from church.  I wear a mask in their cars and sit on a towel covering the passenger seat but we find a way to connect anyways during those trips when help is needed about once per month.

As you can see, there is much abby-normal stuff during my days.  Social isolation and the ongoing seizure attacks are my biggest heartaches.  The latter causes both physical and emotional trauma when they are severe which still happens two of the seven days per week still marked by ongoing episodes.  The two this week included:  1) a violent reaction to an ingredient in an new injected medication that I need to treat osteoporosis and 2) a new strategy to treat severe Small Intestinal Bacterial Overgrowth.  Both of these conditions very likely are complications of ongoing illness as they were not present before I got sick on October 11, 2011.  Each new diagnosis will bring its own special kind of discouragement if I don’t keep my worries in check with my hopes placed in the redemption promised with belief in Jesus Christ.  Already I mentioned a few of the strategies I use for managing the social isolation.  What about the trauma?

I manage the trauma of severe, ongoing illness by trusting in my Lord and Savior, Jesus Christ.  This used to mean that I trusted in the promise of Jeremiah 29:11:

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.  (NIV)

Surely if there is a purpose for all of this suffering then it won’t be wasted.  It becomes part of a greater plan, encouraging me enough to endure even the worst of the pain and anguish I am enduring.  This viewpoint has helped me cope during the first 5 1/2 years of this illness.  It carried me through the decisions to spend the rest of some savings with the hope of a cure and to endure the side effects of such treatments.  I can look back and point to the skills and information that I have learned, write about them here, take to heart the remarks of others encouraged by my stories, and note the Divine sequencing of many things that have happened along the way.  The Lord has provided so much for my care that gratitude has replaced temporary doubts, frustration, discouragement, intractable pain, and so on.  Seeing some meaning in what I am going through or shortly thereafter, gave both me and Steve enough hope to keep moving forward no matter what the “cost” may be.  But what about when the process stopped?  The money ran out.  I am not recovered.  There was no where else to go this past Winter when I got to the bitter end of my proverbial rope with worse symptoms than I could ever imagine!  Yeah, that was the onset of facial shingles in December.  More hell and a hospitalization too.

That’s when I needed to learn to trust whether there would be a purpose I could see or if there would be no purpose or direction at all.  I discovered that complete trust in our Heavenly Father builds faith and the strength to carry each of us through ANYTHING and EVERYTHING.  It’s a supernatural gift bestowed upon believers in God Almighty who trust Him.  For those of us chosen to travel a path of excruciating suffering, we must find our way to this level of trust in the Lord our God.  Our faith will grow as a result and both will carry us through the dark times no matter how dark they become.  Did I tell you that frightful demonic attacks have come during the worst of the waking seizures?  Yes.  It’s more terrifying than I can describe but may try to do so another time.   At those times only the spiritual armor of God (see Ephesians 6:10-18) and this reassurance spoken by the apostle Paul will quiet my spirit.  God is greater than any threat in this world, in my world, period.

2 Timothy 1:7  (NKJV)

7 For God has not given us a spirit of fear, but of power and of love and of a sound mind.

Because what is my worst fear anyways?  Dying?  For me it is probably not dying but suffering even more with dying as the end result.  So finding peace when dealing with the trauma of physical and mental suffering must be accompanied by the reminders of Who overcame death, in Whom have I placed my trust, and in Whom will I find victory over my fears.  To extinguish the fearful thoughts I must again turn to the “sword of the Spirit” as described in Ephesians 6:17 as the word of God.  In the Book of John we find Jesus comforting a grieving friend when:

John 11:25-26 (NIV)

25 Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; 26 and whoever lives by believing in me will never die. Do you believe this?”

Not only did Jesus overcome the grave when He rose from the dead on Resurrection Sunday (Easter), He gave those who believe in Him the promise of a glorious eternal life in His presence where there will be no more weeping, no more sorrows.  There will be rewards for the faithful too.  There will be perfect peace, love, and joy forever.

the cross

I may never see healing this side of heaven.  I may see healing this side of heaven.  I really have no idea which one it will be or when it will happen.  In the meantime I will simply trust in Jesus Christ who knows my name and sees my suffering (Psalm139) and ordains it somehow for good.  He will be here with me always.  I ain’t dead yet so I trust that He will add His grace and power to see me through to my last breath.  Until then Gentle Reader I ask you,

Do you believe this too?

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Just sitting at the table

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My beloved opened the door

And my evening suddenly brightened,

Knowing he would be close with a listening ear

Makes handling the “nasty” less bad and more good afterwards.

I just don’t get used to

The evening ritual of torment

When my world goes dim from sickness

No matter the resting gone before, the mini successes (or so I thought?).

sitting, chair, upset, anguish, grieving, prison, torment, grief, hurt, person, woman, man

I was just sitting at the table

When my eyes pulled closed and shook

My head and neck followed next then I knew

There were just seconds to get lying down before all hell broke loose.

So I did run to the bedroom

Head turned to soften impact bedside

Eventually pulling the comforter over my broken frame

As the sputtering gave way to shouts of terror, gasping for air, legs drawn up too.

In waves the torment continued

Just when I thought I might cry for help

No words came when Steve came to my rescue

Trying to figure out how to get a remedy inside me as I twisted before his eyes.

Tis trauma for us both

When a Monday night isn’t anyway alright

For I will never accept that fifteen hundred of these nights

Are the way it should be forever, oh Lord deliver me please!

Try again the new this or that

Until we or the Docs get it right or even better

Til that night we will sit talking about our day eye to eye

Then ready ourselves for bed with a tender embrace as it should be.

Oh I know others have their trials

And I grieve for theirs with ours in there too

Let me know your need for prayers, Gentle Reader

Allow me to make good use of this time before the altar:  His throne of grace.

My Jesus cares for me, for you

He loves us and lives for our coming to Him

No matter the reason TRUST:  all will be new one day

Until then pray for me too, k?  I am tired from this ungentle cross at my tableside.

JJ

 

What would suit her best?

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That funny bush with the orange berries

That I found tucked in a nursery corner

Was her birthday gift many decades ago

And became another treasure of uniqueness, much like that of her own.

Or the specimen discovered from the zoo

When she found the groundskeeper

And pleaded to give her a cutting

To grow with her collection of rare finds and vagabond species too.

Perhaps the devil’s tongue would be it

That bloomed in the closet each Winter

With a stink much worse than her smokes

And a tropical canopy outside in summer:  uniquely placed in the Midwest.

Surely she would be planted on the hill

Where the orange pavers from Woodstock days

Used to mark the side door to the home

Laden with so many memories and metal trash cans covering some of them too.

Oh I’ll bet she’s still out there somewhere

For her ashes got sprinkled into the earth

Forever mixed with the fruit of her hands

And beautiful gardens, a spa, some whimsy, all in squared borders of suburban fare.

Oh mom, how I miss you this day

As I tend to my own soil and dig

Preparing for Spring flowers and food

Adding amendments, turning it over again until everything crumbles just right.

One plant in particular we share

From your garden and mine:

Those “bee bush” perennial sedum

That you made me edge around in the hot summer sun by back-breaking hand!

Oh how you would love

To see me hail a sharpened spade

Defining my borders so clean with

Just one more bed added most years ’cause it’s also a passion for me borne from you.

Maybe the climbing Baffin rose

I will dedicate to you, Rose Anne:

A rambler, a bit wild yet beautiful

Yes this you shall be in my garden scrapbook come alive where you and me will always meet.

JJ

William Baffin, roses, fuscia, pink, red, climbing, vines, fence, garden
Fuscia William Baffin Climbing Roses