She remains silent

The Jane magnolia remains silent at the birth of April’s Spring

Her violet blooms resting beneath garments of fuzzy gray pods

Waiting, tempted to peek into the sunshine, then waiting some more

For emerging too soon would be to her peril and loss of beauty, my dear.

Oh if I but could rest not by angst but by design like my friend

Knowing the Divine timing and trusting therein better than I have

That loveliness would come in the fullness of my time as well

Instead of deadness, jagged edges of pain, the tazoring of my mind.

Will there come a day when I shall join you in the sunshine of morn’?

When I unfold to freedom of spirit, of movement as in song so sweet?

Where there is little thought to my comings and goings:  I will just go

Just live and give and do and think, knowing all is right with the world?

I do not think it is right that I should suffer so day in then day out

With hope only of heaven when my hopes are dashed 10,000 times and more

The seeking compels me for hours:  pouring over records, research, and facts

Only to be smashed against the wall of my limits, my fate, the unanswered prayer.

What will my own senescence bring?

There is no patience left in me to endure.

No resolve carries me through.

Tears from deep caverns gush forth . . .

But breathe I shall for time shall march forth into the Spring of each new day

Life will go on as our Lord promises His love will go with us along the way

Perhaps one day I shall “bloom where I am planted” as the ol’ poster exhorts

Ever loud, ever quiet, ever true for having stepped out in faith ever simply,

and even ever small.

JJ

 

Jane, magnolia, poetry, Christian, gardenng, Spring, pink, flower

The Struggle is Real

Wake up and wait for the tempest beast to roar

Through my head, my tender frame — ah the pain:

Will I be able to hold back the waterfall in my loins

Will my body rage with tazoring if I try to rise to soon?

Welcome to my world, my day, my nightmare as Cooper said

Alice had black eye make-up unlike the darkness behind my lids

Held so tight, squeezed closed by puppet-like strings of wrath

Taunting my resolve leaving me nowhere to turn but to His Face.

My Jesus knows torture far worse and soon we will celebrate

How He came to save us from our hell by His bodily sacrifice

His ministry when hated, limited only by the perishing of His frame

Such a witness for me, for all to keep moving forward always.

No trial shall thwart the plans made for us in the womb

When our Lord crafted our days, the ups and the deep downs too —

He grieved yet promised to walk with us and deliver us one day

So we could have hope and a reason to reach for His gift above all.

So that is where I will turn:  the Cross of my Redeemer that lives

That delivers me from the angst of life without hope for alas it does:

One day this suffering will be gone and my story will be my cross

May it bring glory to the One who opens my eyes on my bed of becoming . . .

 

. . . for my just reward, for His purposes, for trusting when the struggle is real.

JJ

cross of jesus

New Skills

1 Corinthians, believer, Christian, not be wasted, don't give up, hope, not in vain,

If I had to create a resume today the contents would be a bit different for these past 5 years.  Web design?  Yup.

When I get concerned that my professional skills have eroded, I remind myself that life is measured more than by occupational achievements.  Later I will write about the journey for meaningfulness that led me to simply trust the Lord with each moment, each day.  For now perhaps what they used to call a “Functional Resume” is in order?  So here I submit a list of new things for which I am grateful to have learned despite being sick every day for over 5 years.  Surely the time was not wasted!

Developed 5 websites:  1 on Etsy and 4 on Word Press.

Self-published an eBook, Hope Beyond Lyme:  The First Year.

Taught myself how to make macramé and handcrafted jewelry, developed Trinity Jewelry by Design, sold hundreds of pieces online and at 5 events, then sold the business 2 years ago.

Learned about Lyme disease, mercury, Candida, seizures, epigenetics, biologic dentistry, shingles-and-other viral infections, biotoxin illness PLUS their respective testing and treatment protocols.

Learned about social media, ecommerce, blogging, Pinterest, Twitter, LinkedIn, Yahoo-and-other online forums, Skype (formed a prayer group), basic video production, online banking/PayPal, how to use a smart phone with Apps, and the like.

Became an Advanced Master Gardener.  Achieved the highest-star rated sustainable garden at our home.  Finally harvested our own blackberries!

Experimented with special diets for health:  ketogenic, low oxalate, low glutamate, gluten-free, SIBO, and the usual dairy/sugar/sweetener/mold-free diets.

Became an Assistant Editor to my Editor/Husband for the quarterly publication Canoe News of the United States Canoe Association.  Learned the basic features of MS Publisher and PowerPoint.

Experimented with various methods of detoxification for health including full spectrum infrared sauna, colon hydrotherapy, Epsom/mineral salt baths, lymph massage, and various binding agents (zeolite, benonite clay, fulvic acid, Intestinal Metals Detox, acai fiber, cholestyramine, chitosan, Welchol, etc.).

Learned about environmental toxins, extreme mold avoidance, types of masks to reduce exposure, cleaning strategies, remodeling, and more.

Implemented energy conservation, work simplification, home safety, accessibility, and novel coping strategies (that I used to train my patients!) to manage changes in my physical abilities.  Trained my husband in same, often in times of medical crisis.

Began a “telehealth” arrangement for part of my healthcare with a naturopath/genetic coach out of State.

Learned to camp in a travel trailer with my beloved hubby, Steve, and our German shepherd pup, Elle.

I bought my pick up truck 5 DAYS before I got sick.  Quickly, I learned to drive a truck then how to pull a trailer, haul stuff, and manage a 4-wheel drive vehicle.

Learned basic upholstery crafting to make all new cushions for our travel trailer and two custom cushions for a medical office.

Successfully navigated a complex and long disability case despite ongoing nightly  seizure attack episodes frying my brain at times!

Perhaps there is more yet I will stop here.  As an occupational therapist, I am trained to assess the life skills of my patients and how these are affected by his or her medical condition or disability.  Its as if the Lord knew that I would need the very skills of my profession to handle the devastating effects of a complex, serious illness 30 years after my career began.  In the past I’d often “re-invented” myself at work, moving from mental health to rehabilitation then home health care.  My work included contract work, consulting, and even a public speaking program called the Living Safely ©Program. Just about everything that I ever learned in my profession has helped me to cope and begin to overcome my current situation.

So when I shed a few tears for the setbacks that come, like last night, they simply do not last very long.  Or at least I can clear my mind more quickly than in the past.  Gratefully, I have other things to think about other than illness:  things I can still do when I can get up and get moving again.  And maybe, just maybe, when the seizures stop for good, all of this learning will bring glory to my Lord and Savior as He has helped me get through each moment . . . oh and Stevers too of course!  My husband is a saint!  And very wonderful.

Be encouraged, Gentle Reader.  Lord willing, I am going to get well!  I will be praying for you too this night.  Let’s hang in there, k?

Take care,

JJ

Psalm, 73, 73:6, God, heart and my portion forever, Lord, sustains, sickness, hope, always with me, Holy Spirit, trials, coping, Christian, believer, Jesus Christ

Revelation, 21, 21.5, make all things new, believer, Christian scripture, hope, help

Waiting

Like an iris corm sleeping beneath the chilled earth

I, too, wait for my moment to emerge from below.

Weathered by icy snow, or warms-n-thaws that heave me so

My countenance strains under the stress despite a Divine plan.

When I stopped asking, “why?” I was left with less hope not more

For my search for meaning had brought me forward to face another day.

No answers have come, few bigger prayers have become reality

Yet my Lord has carried us with His unending love and care just the same.

We are going to make it to a better place one day, don’t you see?

The one where no tears carry the day and all is lovely and good.

Until then I wait or drag myself up after torments in the night, the day

Shall all thus make the happy ending sweeter one glorious day soon.  JJ

varigated iris, hope beyond, Christian, iris, inspiration, garden, meaning, gardening, metaphor, poetry

 

What becomes normal

Truly none of us are normal deep down inside.  We all have our crazy stuff, some more than others of course (myself included!).  Better for most of that stuff to stay buried you say?  Maybe so.  Then again, why ever lose hope for becoming more whole, getting well?

For some of us, we don’t get to choose what will be normal for us and our loved ones.  This is particularly true when someone gets sick or suffers a serious accident affecting them for say, 6 months or longer.  After 6 months the healthcare profession changes your status from acute to chronic.  By then the “normal” way of life has broken down and often looks a lot different than before the event.  Expectations can change for the future; often people look at you or treat you differently as well affecting many, many relationships.

When living with a serious, ongoing illness or disability, new norms for life get set in motion and become habit.  At some point we have to adapt to the changes in routines, levels of functioning, finances, symptoms, emotions, social dynamics, recreation, work, and more.  If we don’t adapt then we would spend incredible amounts of energy and resources repeatedly trying to figure out how to cope with the changes.  Instead, new daily activities get strung together as new habits, eventually become routines and may even become a new identity as they combine into roles such as “patient,” or “caregiver.”  The phrase, “new normal” comes to mind when such profound changes affect both our lives and the persons around us every day.

We don’t necessarily like where we have landed when it is undesirable.  Sometimes we can’t change things for awhile; other times the changes become permanent.  We do have to make a choice about how we cope with all of it emotionally and in our thought processes including our self-talk.  Will we be angry or find peace perhaps in the promises of our Lord, Jesus Christ?  Will we give up or keep seeking for answers to aid our recovery?   Who will we blame for our lot in life at any given moment?  Acceptance may come or it may never arrive on our doorstep.  However, some semblance of acceptance is key for moving forward.

The process for me in finding a new normal has occurred slowly over 5 years of battling a serious illness.  If I were to summarize the 3 tests noted above of adaptation, emotional adjustment, and thought processes I would admit that I do not like most of the current outcomes.  I don’t like the myriad of mold and chemical-avoidance strategies that everyone in our home must complete every day to minimize triggering a seizure attack episode for me.  But we do them anyways.  I used to cry just about every day and now it’s much less, mostly when discouraged by roadblocks in my care. But I keep searching anyways for answers.  Lastly, I don’t and have never doubted that these daily wretched episodes have a biological (NOT psychological) cause that can be treated.  So I use the tools I have to help myself get well.  I don’t know when or how or why the episodes will stop.  I do believe that one day they will stop completely.

And when the seizures stop I will embrace a new normal.  Things won’t be the same as they were 5 years ago when I was working as an occupational therapist in home health care.  My physical frame is weaker and injured from all of the physical trauma and I’m not sure how much I can get back.  I will try, however!  I can no longer attend our church, contributing to the loss of many relationships that were just getting started when I got sick.  Travelling is restricted to camping in the Tin Can Ranch (on wheels!) for the foreseeable future.  On the flipside, a few positive outcomes include having tremendously increased my computer skills, renewed my interest in entrepreneurship, and desire to support my husband’s growing paddling dealership.  Being his helpmate has given me purpose on my sickest days when making his lunch when I am awake in the middle of the night was all I could do for my Stevers.

What becomes unpleasantly “normal” may not have to stay that way forever (and usually doesn’t).  Those of us who learn to trust in the plan that the Lord has for our lives may find it easier to accept the changes when they come.  We let the Holy Spirit guide us, comfort us along the way.  We keep our eyes fixed on Christ and our hearts and minds soaking up His Word.  We are then better able to let go of wanting things to be as they were and are better ready to grow into the possibilities of a more meaningful, maybe even more fun, tomorrow.  I never thought I would be the Assistant Editor of a national canoe and kayaking magazine nor blog or help an artist friend complete her website.  I just did what I could with what I had, where I was (as Theodore Roosevelt once said) and have landed in a better place in many ways.   Better yet, I trusted in knowing:

Jeremiah 29:11 (NIV)

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.

You will be the first to know about those plans for sure, Gentle Reader.  We have come a long way together, you and me.  I thank you for sharing my journey.  Feel free to share your thoughts about the “normal.”  We are going to be alright no matter which side of the spectrum we are on, eh?  JJ

After TriAdventure Race

Steve and I celebrate his team win at the 2010 Maumee Tri Adventure Race