Tag: trust

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

 

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

So much to consider

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So we come to a crossroads, my beloved and I

From where will we go from here to continue my care?

No cure hath cometh from a year of killer drugs within

Five years of tortuous suffering with costs beyond compare.

We don’t know why the trauma continues to this day

Whether it will continue or end?  There are no promises

That when we show up in this life that all will be grand

But shunting the yearn for heaven my dear, the treats beyond.

Today I am tired but stable, weak but reflective

Grateful for so much while I ponder theses woes . . .

My beloved is sweeter than honey

His warmth a comfort to my hol-ey bones

He loves me deeply still; I see it every day

And life’s sweetest:  love from this man I have come to know.

Alas I search the scripture and find that even Job

Needed to trust in the Lord not knowing why

His suffering exceeded the faith of his friends, his kin

When all was really a battle within the spiritual realm

Having very little to do with his past, to do with him.

So in the seasoning of the late missionary, Helen Roseveare

“Can you thank me for trusting you with this experience

Even if I never tell you why?” God asked of her in the midst of terror.

“He doesn’t have to tell us why,” she would learn

“But He often does in His gracious, loving mercy,” for sure.

So I will seek the perspective of the privilege

It is to be used in this life by the Lord almighty

Relinquish my frame to His plan and outrageous love

Then wait and see:  He is worthy.  My response:  humility.

JJ

God, sun breaking through clouds, sunrise, sunset, storm, hope, rays of sun, sunshine, clearing

 

 

What did you learn today?

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And let ours also learn to maintain good works for necessary uses, that they be not unfruitful.  Titus 3:14

I learned today that it pays to take good notes.  When I had to replace a healthcare supplier within a few days (or lose my mind!), I was glad to find my notes from the research that I did at the beginning of receiving home infusions 7 months ago.  Perhaps back then I should have gone with that other company instead?  Oh well.  I got to work with their Patient Care Coordinator this time and she is wonderful!

I learned this past week how being off from work and  having less income has helped me to find inexpensive continuing education credits that I never knew existed before I got sick.  Looks like NINE of the TWELVE hours required will be FREE!  Yeah God!  I will be able to keep my occupational therapy license one more year!

OT, occupational therapy, occupational therapist, work, medical leave, disability, license, licensure, renewal

I learned this past month a deeper definition of true love as demonstrated in the life of my husband, Steve.  First some background:  we had to cancel a trip to see his family this past summer when his dad was in too much back pain to travel cross-country to our rendezvous point in Branson, Missouri.  His mom was disappointed that the celebration of her 80th birthday was postponed until Thanksgiving.  Then our trip to meet up with his family in Texas in November got cancelled when I landed in the Emergency Room five days before departure with severe back pain.   I wasn’t even able to go out to dinner with Steve on Thanksgiving (which means I missed celebrating our wedding anniversary on the same day!).  As you saw from my last blog, Steve’s response was simply that we were, “saving money left and right!”  Well, yes and well, no.  His parents are aging.  Visiting them at their home in California is complicated due to my extreme sensitivities.  Perhaps Steve will be making a visit early next year and when my health is more stable.  In the meantime he just continues to be a wonderful loving husband.  I am so grateful for his love and devotion.  Often he is my “Jesus with skin on.”

I learned this past year the meaning of the phrase Carpe diem.  Each little trip, each tender moment between Steve and I, each time the garden got watered or weeds got pulled were realizations of moments when I could do a little more.  The numerous moments that were quite opposite just made “seizing the day,” more special.  We have learned to be more spontaneous to enjoy the good graces of the Lord even when they last but an hour or two.  Carpe diem baby!

I learned these past 5 years of serious illness to call upon the Lord for everything.

Proverbs 3:5-6 New International Version (NIV)

5 Trust in the Lord with all your heart
    and lean not on your own understanding;
6 in all your ways submit to him,
    and he will make your paths straight.

Whether it’s finding the money for medical treatments or getting myself up to go to the bathroom when seizing, my Lord and Savior cares for the details of my life and gets it done.  He is there when I am awake in the middle of the night.  He provided that relic airplane for me to sit under on a sweltering summer day so my husband could fulfill a dream at Oshkosh.  My Jesus will be joining us in celebration when I become well again someday too.

And lastly, I have loved learning the value of writing Hope Beyond.  It’s not quite an online journal but a way of looking from the inside out.  I hope to point you, precious Gentle Reader, to more than the saga of my situation but to the glory that awaits both of us when we place our trust in the Lord, Jesus Christ.  As Steve and I say in our Christmas letter this year:

No matter what our perspective may be, the most important view at Christmas (or anytime) is the one that brings us closer to the person of Jesus Christ. We stand in awe of His sacrifice for us that brings unspeakable joy, knowing Him as Lord and Savior over all.  He loves His own more than words can say:  the best Christmas gift of all.

Going beyond our temporal learning to the eternal love of Christ can be our gift today, next month, next year, 5 years from now, and beyond.

Gentle Reader, what do you say that you have learned?  Please let me know, k?  JJ

lake, couple, Christian, Lake Winnebago, Oshkosh, marriage

 

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The way it should be

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We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”

I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way.  The cleaning got done at 3 o’clock Monday morning!

The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.

One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.

Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.

Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.

My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off.  He never does that.  I benefitted tremendously.

The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them.  My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.

The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home.  My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.

Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.

I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it.  Someone named “John” supposedly signed for it but it was never found.  They reimbursed me for both the check and the “stop payment” fee.

I could go on . . .

If there is anything that I have learned over these 5 years of illness is that things are never as they should be.  Well actually I knew that long before 2011 from my work with PEOPLE in healthcare.  Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes.  In the end it’s not about the individuals really.  It’s about where I am placing my trust.

A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.”  Yes indeed.  Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ.  We are to love everyone else as unto the Lord.  Only He will never forsake us, never fail us, and deliver right on time every time. 

Alrighty then.  This rant is now over.  It is just before sunrise and my nurse will be here in a few hours to administer my care.  I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts.  Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways.  I will trust that the Lord’s will will be served once again.  So before I stop making any sense at all, I will end here.

It’s probably the way it should be?  JJ

 

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