Be true to who you are

This song will make the point of this post more clear.  Have fun as you listen to this upbeat tune from the Beach Boys!

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“Just like you would to your girl or guy.  Be true to your school.  Rah rah, shish boom bah!”  And Gentle Readers I submit that this also applies to US TOO!

In a recent trip to the Emergency Room (yeah same story, different day) I was received by the male nurse who did my initial evaluation less than a month ago.  I remembered the gooley, inappropriate look on his face as he handed me a hospital gown and asked me to change clothes then waited for me to do so right in front of him.  He had the gown opened just below his eye level.  His eyes were staring at my chest.  The expression on his face was blank.  And I didn’t buy it one bit.

I really don’t know how I had the presence of mind in the middle of non-stop convulsive episodes and a struggle to breathe to ask him for some privacy.  He paused for a moment then looked up at me.  “Of course,” he said or something similar and handed me the gown.  He pulled the hospital curtain and continued typing on the portable computer just beyond what is also called the “privacy curtain.”  My beloved husband, Steve, assisted me in changing my clothing thank you very much!  My dignity in an extreme moment of vulnerability was spared.  Thank you Lord.

I know that this nurse is a medical professional.  He has probably seen thousands of naked bodies and women a lot better endowed than yours truly.  In a time of crisis, the medical professional assists a patient in changing clothes as a part of the procedures.  Yeah but they are not to do so while acting in an unprofessional manner.  He was not going to help me in that moment unless I was dead!  Period!  The rest of that visit went more cordially and more appropriately.  I changed clothing on my own after the assessments and treatments were completed about four hours later, thank you very much.

Flash forward to this past Tuesday night.  Mr. un-Wonderful was working the p.m. shift again in the ER and begins his nursing evaluation.  I cringe.  This time it was a petite, blonde nurse co-worker who asked me to donn a hospital gown.  The dude was within arm’s reach of the gurney upon which I am lying.  I felt his eyes upon me.  In that moment, shaking violently with convulsive episodes and struggling to breathe, I was glad that I had been trained as an occupational therapist and muttered as much.  As such I know more ways to dress and undress than the average person with virtually any disability that you can imagine.  I laid the gown over my clothing, covering my personhood, and struggled then succeeded to doff my own clothing and get into the approved garb.  Steve might have helped some; I don’t know as my eyes were closed.  The nurse  wasn’t happy but I was.  And in doing my own thingy, I remained true to myself.

The rest of the ER visit went as they usually do.  After about 750 cc of fluids, IV Rocephin, and a shot of Morphine (my first ever!) I was feeling better.  While the second bag of IV fluids diminished the severity of the episodes, the tremulous part of the episodes didn’t stop until after the Rocephin.  And that improvement lasted for about a day with barely a tic attack here and there.  Yeah God!

Now I am in the aftermath of trying to decide what to do.  The prescription Keflex (same cephalosporin drug class as Rocephin) has begun irritating my stomach.  While there were findings of a urinary tract infection in the ER, the urine culture was negative.  There are still fewer and less intense episodes overall:  the hell that plagues my life and keeps me clinging to the Cross of Christ for hours every day.  My Doc says to stop the Keflex.  I held the herbal Biocidin (anti-microbial) after the ER visit to avoid an interaction with the new prescription drug.  What shall I do now?  Hmmmmmmm.

I know what my gut is telling me to do:  be true to myself.  I will pray for the Lord to guide my very wise husband and me.  I will strive to be respectful to those trying to care for me with as much courtesy as I can muster in any given situation while protecting my own privacy and integrity when it is all that I have.  In due time we will figure all of this out and be much better for the journey the Lord has allowed for His purposes and our good.  Of this I am still sure.

And if anyone tries to tear down my alma matter, Mott High School and the mighty Marauders, well then I will be “true to my school” as well.  “Go team,” I will shout on high!   Lord willing, we are going to win!  JJ

 

 

From the side of the bed

8th Anniversary 11.24.15
Celebrating our anniversary November 24, 2015

 

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Sick in bed November 27, 2015

He has seen it all

My beloved, the one with soft blue eyes;

In the medical facility or on the road as we pass across the miles

He looks to me with a precious love that makes me swoon all the time.

It doesn’t matter my status that day:

The screams of terror, the gentleness of a warm embrace,

He just looks at me as if we were lying under a canopy, shielded from the hot sun

By the lush branches of a mighty oak one summer’s morn along the way.

But that is not what has gone before me once again these past 3 days and more

His vacation was spent caring for me in ways neither one of us would choose.

He steps forth to do what must be done just the same

And says of our time:  “we had a nice week now didn’t we?”  I guess so, maybe in some ways we did my love.

I sigh in awe, something short of disbelief.  How did love like this find its way to this place between us?  This bed is marked more by sickness than passion night after day after night?

Surely it goes beyond that which either one of us can see!

This walk was borne from the One who made us thus and so

The One who set this path for goodness, for purpose yet unknown.

While wasted days is all that I can see very, very late this night

(With tensions mounting, wills weakening under the weight of it all)

I see that my Heavenly Husband carries our hearts with His special sip of tenderness

Bringing sweetness to our lips when we need it most as he has so many times before.

From the side of the bed

I look up and know more than my Love,

Surely I humbly receive care from more than the one I can see.

Thank you Jesus for my Steve.  Thank you Jesus me loving so!

So if ever you are graced by a love like this, dear Reader, and I hope someday that you do:

Hold tight, hold fast with praise, with alms beyond your brokenness to discover what the Lord alone can bring.

For you are witnessing more than a miracle in the midst of hurricane:

You are finding grace that will see you through anything, truly, truly with love I say this to you.

JJ

It Just Doesn’t Matter that much anymore

What others think of me, especially online, used to concern me to the point of scrutinizing every typo and punctuation mark!  Tell you what, it just doesn’t matter that much anymore (IJDMTMA).

Keeping in mind the reason for every significant action in my life so I can justify it, rationalize any lapse in judgment, or simply give me another reason to criticize myself occupies less of my mental space these days.  It takes too much energy.  Any other reasons would go against what I just said!  IJDMTMA.

Cataloging significant records that document the divorce I endured, the major court case I lost, the medical conditions that have come my way, too many artifacts and photos of special events, and purchasing new file cabinets to keep track of these events and more (I have 15 packed drawers in various lateral files, desk drawers and file cabinets, plus quite a few plastic bins around!) involves more-purging-than-storing these days.  If I need it that badly surely I can find it online somewhere, right?  IJDMTMA.

I now live in a town where the cost of living is so affordable that a few people I know have a second home just to store their stuff!  Or folks rent storage spaces in addition to their primary residences (and I am not talking about those living in an apartment or condo!). Gratefully my husband, Steve, and I live in a modest home that requires us to purge stuff periodically!  We don’t want to keep accumulating stuff!  This Christmas I will need to discard numerous Christmas decorations that were up before we remediated our home for mold damage.  The most treasured items will be consolidated into one bin.  I’m going to have to get tough and proclaim:  IJDMTMA.

Similarly, musty memories, painful flashbacks, grief beyond what most must endure, and the drag-me-down burdens that comprise life’s worries have come to the surface with the wretched convulsive episodes of the illness I have been battling.  I simply could not stop the process if I tried.  Perhaps these came as a consequence of a few illnesses that have affected my brain?  No one knows.  What I do know is that If there are to be any redeeming benefits to the nightmares of these past 4 years it must include the involuntary healing that came as these demons were set free.  Yes, the seizures helped release some bad stuff going on in my head.  Carrying this mental baggage has gone down immensely along with the emotional pain.  A different kind of healing has occurred as a result.  Joyfully, IJDMTMA.

The losses of what I once held so dear (i.e. many relationships, my occupational role of 32 years, more financial freedom, certain activities, physical fitness, and the ability to function normally) has been heartbreaking.  But just like learning to let go of other people, places, and things in my life, these intangibles had to be released to the care of my Heavenly Father as well.  At this point I do not know if any of them will come back.  Amazingly I have discovered that I still can have some good moments, make new friends and memories, have everything that I really need, and experience love like never before even with a total life makeover.  To the need for having things be just so I say, IJDMTMA.  Life goes better when held more lightly in the wonder of the moment . . .

How do I convey that “IJDMTMA” is a relatively peaceful, not a sad or angry place in which to be?  I simply have to be here right now.  This attitude has become like a protective coating to keep me from falling apart, from losing what is left, from thinking that my Jesus has abandoned me. He has not!  IJDMTMA is the construct into which I must retreat lest the grieving of what is no longer here overtakes me and blinds me to the goodness that still remains.   In Ezekiel 3:8, the Lord shows His prophet that He will indeed allow him to become “hardened” so that Ezekiel may not lose heart as he carries out the work of ministering to the nation of Israel still in exile.  Wow!  A God-ordained rebellion of sorts will help keep Ezekiel from discouragement.  A toughening will help him and his gifts to continue to be used for God’s glory.  Yes, I want the will and glory of my Lord too.  In the cocoon my Lord has woven for me I can say to all that other stuff:  IJDMTMA.

It just doesn’t matter that much anymore that things aren’t the way they should be or used to be.  I am still here and that matters to me.  Much goodness still surrounds me as I look around this room where I am sitting and see the pictures, handiwork, awards, furniture, and records that tell the stories of Steve and Julie.  Cool beans.  Better yet, just look into our eyes or sit and chat a spell to see more closely what real life looks like in those who are grounded in trusting the Lord for each hour of the day.  It isn’t perfect.  We don’t want our lives to be perfect anyways.  I have a sense that maybe yours isn’t perfect either.  It’s going to be o.k. for those who are in Christ Jesus.  One day soon we will be in His presence and the real stuff of life will be revealed.  And with His glorious light shining all around us we will be with our Lord and Savior for always . . .

Coming to faith in Christ does matter to make this all possible.  Dwelling in the presence of the Lord for all time will bring lightness of heart for all of eternity.  I will be there.  Will I get to see you there too Gentle Reader?

I’m tired.  Goodnight all.  JJ  Ezekiel, harden not your hearts, suffering, endurance, it don't matter to me, what matters most, Christian, marriage, overcoming, chronic illness, chronic pain, hope, trust, the Lord

He said I was tough

Lying in the dusk immobile on the asphalt was not the place I had intended to be on Sunday night.  It was only the second time I had attempted to ride my bike this year and it ended in a bit of a disaster when my toe clip malfunctioned . . .

20150824_143000Lying on my chase lounge icing my sore, bruised, scraped elbow the next day came with a pretty view of our garden.  Both the clematis and the wisteria had started climbing the 8-foot trellises that flanked the flagstone patio.  From every angle but this one, their foliage plus the hydrangea, Japanese maple, dwarf mugo pine, and two goldenthread cypress blocked the view of the neighbors.  Perhaps in another year the landscaping plan will have achieved its goal of complete privacy!

Lying on the grass after dizziness set in post-crash last night, all I could see above me was a few buzzing mosquitos against the early night sky.  I had no idea the extent of my injuries.  How would I make it home?  We were two blocks from our house and I had not yet moved my left arm in searingly sharp pain.  Steve hovered nearby, having dismounted his road bike, waiting for a word from me.

Lying in bed this morning, the wretched convulsive episodes were particularly long.  They jarred my tender left arm and beaten-up spirit.  The tears flowed easily:  the big crocodile type ones that come from deep within.  “How much more trauma could my broken frame handle?”  I wondered.  Probably “all of it” would be the Biblical answer but definitely not in my own strength!  The Lord breathed life into me once again and helped me get up out of bed when my world stopped shaking.  It was afternoon:  time to get breakfast I guess.

Lying on the treatment bed in physical therapy today, I was glad that my PT was a competitive cyclist.  Like my husband, he had crashed his bike a couple of times as a consequence of the toe clips of his cycling shoes not disengaging from the pedals.  Jason made it sound like a normal occurrence.  When you must stop suddenly and the quick turn of your ankle fails to disconnect the cleat that attaches your foot to the pedal, you can do nothing to brace yourself from falling.  You simply fall straight down sideways to the hard asphalt or concrete below you.  Your elbow usually ends up taking the brunt of the impact.  Yup.  For me this was followed by my knee, hip, shoulder and head.  Thank the Lord for my helmet!

Sitting after dinner talking with my beloved Steve this evening, we reviewed the accident.  There were misunderstandings between us that needed to be clarified and a plan put in place should an acute situation like this come our way again.  This incident was unlike the medical episodes I encounter every night that often require his physical assistance or supervision.  Yet it was very difficult to separate the two types of stressors.  We agreed:  all we really wanted was a nice activity that we could share together.  Instead something went terribly wrong . . . again!  So sad.

Reliving the whole ordeal yielded two truths that made this experience significant for our future times together.  First, when I was crying in pain I was also scared not knowing if I had any serious injuries (as I still couldn’t move my left arm), struggling to get myself up off the ground the second time, and unsure how to position myself to walk home with my bike.  Steve had offered to go get my truck to bring me home.  Some other ideas he had ended up stirring some resolve within me to force myself to do as much as I could on my own.  Even in this time of mini-crisis, I would not fall victim to another major setback in my health.  I cried and groaned in agony for two blocks, stopping periodically as needed.  I was going to make it home under my own power no matter what!  This attitude carried me though the pain of later dressing and icing my wounds.  (Gratefully nothing would be broken or even sprained!)

The next morning was difficult as already mentioned.  The second truth was realized as I later was able drag my way through my daily routines.  For many of us those routines might mean interacting with real people.  For a largely homebound person that means checking social media!  And what I found under my brief post on Facebook about the accident and my gratitude for no serious injury . . . was as humbling as it was empowering.  My beloved made a comment in which he called me a “tough one.”  Really?  Yes really!  And yes, I guess I am!  He added a thought this evening that not everyone can keep on going with all of these struggles going on at once.  His words meant the world to me.  The person closest to me in this time of unbelievable struggle believes in me.  He said I was tough!

Now you and I both know, Gentle Reader, the source of the strength that lies within me.  It is not my own, it comes from the Lord.  I embody His strength when I have none of my own.  When my resolve can bring me no further, my Jesus’ hand covers mine over the handlebars and together we roll that crazy thing home.  And when I had to wash open wounds it was the Lord showing me what to do, giving me the courage to do it too.  My beloved helped me apply the compression bandages to keep down the swelling and pain.  It was my Heavenly Husband who gave me the idea to use this kind of dressing of which I had never used before and was incredibly effective.  Wow.

Lying in bed later on tonight I will have much praise for my Lord and for my beloved husband.  My arm is working fairly well a day later and I will recover fully.  I have learned a little more about the physical toughness that goes with the mental toughness of recovery from serious illness or accidents.  Both will happen in this life to all of us.  It is my prayer, Gentle Reader that no matter what situation you may find yourself in someday that you too will find the Giver of strength available to each us that knows no boundaries.  I’d love to hear about your travels with Him too.  Kind of like a bicycle built for two, eh?  JJ

woman on a bike, woman riding a bike, bicycling, biking, recreational riding, cycling, winter cycling, winter biking
First ride this year: that’s me taking a quick ride around the campground, January 2015

The Day is Never Really Wasted

Missing my Dad.

Closing my online jewelry shop.

Cancelling a dinner invitation for me with new friends.

Spending the morning and evening in bed with complications of illness.

Questioning the utility of a new treatment before it really has begun to make a difference.

Perhaps you can see where I am going with this?  No where productive, positive, encouraging very fast.  These are the kinds of days when I question the value of each breath (that almost stopped twice today).  These are the evenings when I wonder why I try to plan anything away from our home anyways?  These are the days that I cry a little more than usual.  And these days are necessary, really, to grieve and move on.

When I worked as an occupational therapist in rehabilitation, we often told our patients that, “recovery is a jagged line.”  Oh how I have found that to be true these past 3 1/2 years!  Looking back to the beginning and middle of this period of time, there were many times when I am sicker than I am now.  There were many unanswered questions, new treatments to try, expenses that exceeded our income, strains on all of my relationships, and lifestyle changes that seemed too much to bear.  So many questions came to mind as the weeks extended into months and years:

I wondered if I could continue to get to know the gals I’d just met at my church or my husband’s adult children, make any new friends, or succumb to the ill-effects of isolation instead?  How much suffering could my body endure without permanent damage to my brain, neck, back, or other bodily functions when the convulsive episodes were so violent?  Would I embarrass myself in public, get into an accident in a public place, or be found on the floor some evening by my beloved husband (who was already stressed and sleep-deprived)?  Why on earth did I have to endure such hellish nightmares, flashbacks, and heart-wrenching grief at this time in my life when I had worked so hard to become free of so much sorrow in my past?  And most of all, would anything good come from all of this:  would it be wasted time and effort after it was all over?

Some of these questions have been answered by now and some have not . . . yet.  I have made many new friends.  The process of getting to know my hubby’s children has been slower than I would have liked yet it probably is for the better; we are living a long-distance from all four of them which makes everything a little different too.   My mind has actually become clearer with the extreme dietary measures, reduction in mercury toxicity/dental issues, and healing of my gut (since the brain and gut-health are related don’t ya know?).  The physical consequences of illness will require some more treatment soon but at least my weight is stable and the overall deconditioning has still allowed me to perform most of my activities of daily living.  Further, when I felt sick in public or driving down the road, I was always able to rest in my vehicle thus avoiding an incident, gratefully.  These last two are amazing to me:  the Lord’s angels must be protecting me when I am away from home.

Steve and I have found ways to cope with the nightly convulsive episodes, sudden physical collapses that require assistance with my self care, and challenges to our intimate life on occasion.  It helps that Steve is wonderful!  It helps that he relies on the Lord and fellowship with strong believers to see him through this season of our lives together.  His faith strengthens mine too.  Although we can’t be together as much as I would like to, it helps me to know that I can trust him and look to him for spiritual direction, spiritual leadership.  This is God’s plan for the home, for marriage.  And as that design plays out between us, I know that the Lord is strengthening me too.

The Lord has never left me or forsook my faith in Him.  Even in near-death experiences, demonic attacks (and there have been more than I can count), and times of deepest despair, my Jesus has carried me through it all.  The spiritual peace that developed certainly has served to clear my mind, bringing me to a place of clarity I had never seen before I got sick.  Renewal of our minds is a gift and a promise only the Lord can give as we read the Bible.  I am grateful for His work through this process.

I really don’t know if looking at the female hormone/menopausal connection with the onset of seizures (and its related testing and treatments) will be fruitful or not.  Is it catamenial seizures?  I do know that I am probably going to make some more new friends trying to figure it out!  Some more new connections will also be made in the synapses of my brain as I study a whole new body of information.  Letting go of my hobby business today and getting focused on a more professional venture will challenge these new skills, quite possibly moving me from this disabled state to one of productive living.  Oh how I hope so!  This incredible experience has inspired a new product that I invented and eBook that I am writing.  That is cool, eh?  Yeah God!  Perhaps things will come together just as they need to and when the timing is right?  This season of time will have served its purpose; it certainly will not be wasted.  This Father’s Day will just be a microcosm of the larger picture with all of its days, its parts playing a role:  good, bad, and ugly too.

And in the end I know that the good will outweigh the other two.  How compelling of a story would I be able to write if everything was always hunky-dory?  Nope.  It would be boring.  On the stage of life, we are to live fully no matter what happens to us.  We are to live like the sign on the wall of the therapist’s office that I saw when I was searching for meaning in my life at just 24 years old:

Bloom Where You are Planted, trust in the Lord, overcomer, overcoming trials, Christian response to, faith in Christ, hanging tough, Bloom, Christian blog

Yeah.  Evelyn at Catholic Charities had it right.  And the gardener in me wasn’t even awakened yet when I read that banner!  The motto of that poster has encouraged me over and over again, becoming the foundation of my life’s work as an occupational therapist and helping me to re-invent my career a half-dozen times.  As a believer in the Lord, Jesus Christ, I can see that He is the God Who uses all things for His glory.  Someday you and I will get to see how these gnarly threads of our lives have woven together to create a beautiful tapestry that characterizes the life of one surrendered to Christ.  With that hope I can face tomorrow and all that it brings.  With that hope I submit to the will of my Master Gardener, my Lord.

With that hope you can too, Gentle Reader.  Bloom!  With love, JJ