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

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First ride this year: that’s me taking a quick ride around the campground, January 2015

The love in my comb

Gently he pulled the brush through my hair as if each stroke was a special salve for my soul.  You could hear nothing in the silence, not even his breath or mine.  The darkness fell between us.  The moment hung there in time.  We had just witnessed so much . . . there was no need for words.  Only love moved from his hand to me, gently freeing the hairs once tangled in the madness that had just gone before us.  You might see this as an act of romance I suppose.  But this night no romance would explain this kind of tenderness that now drifted between us.  We simply enjoyed the silence, the calm, the love lain there slightly wounded just up from the floor.

That love was near me that night alright, well within my grasp.  Oh I felt it with each stroke of the brush that was the tool he could reach first in the awkward darkness.  I felt it from his warmth standing closely behind me as I sat with my legs uncomfortably collapsed underneath me on the hard tiled floor.  The rug, marred with uneven loops from the dogs paws underfoot where she slept each night, gave little warmth.  My hair was wet and so were my shoulders.  The stuggle that came with forcing myself to wash my hair in the tub at the tail end of a convulsive episode had subsided into a senseless stupor.  With my broken sentence my beloved found my grooming basket under the sink.  It made no difference what implement he chose.  His love would find its way to me with soothing swiftness followed by the tempo we might take one fine day, walking along a seashore somewhere beautiful.

Oh that I should have such an opportunity again!  Will his capable hands finger their way through my auburn hair blowing in the warm sunshine of a summer day?  Would he tighten the drawstring clasp beneath my chin of the paddling hat matched with our tandem outrigger canoe as we headed out onto the glistening lake?  Or when his arm slips around my waist as we laugh at our pup racing along the stream of a wooded path, will I forget that our tender moments were once matched with sorrow so deep?  I do hope so, Gentle Reader.  For all of us who suffer what we ought not to endure, I do pray that restoration, healing, and mercy will cover what was once ugly with that which is lovely again and again.

Until that glorious day for me, I shall keep my eyes fixed on the sunshine streaming through my bedroom window.  I know by Whose creation it shines and that one day all will bow and marvel in His glory, fully well, fully at peace.  The love of our Lord, Jesus Christ will comfort and redeem our suffering beyond what the ones we cherish could ever do for us.  And yet their heartache for sharing this journey with us shall be rewarded too.  The darkness shall fade away forever for all of us one fine day.  Only His light will reign and the darkness shall be no more.  In that day my friend, we will comb the heavens never finding an end to joy for all who believe, for all who hold out for the hope of heaven.  Together we will dwell in the presence of the King of Glory!  Yes, indeed.

Sigh.  That day is not here yet.  What is here is the love of my life holding my comb in the shadow of night.  He lifts me gently into bed and covers me with love that I could never imagine in the past.  He is my Jesus with skin on when I need them both.  I am so blessed.  How could I ask for more?

Off in the distance

Time is right

This is a tough one for me and likely for everyone reading this at some level or another.  Let’s add a Biblical perspective:

There is a time for everything,
    and a season for every activity under the heavens  (Ecclesiastes 3:1)

The Lord is good to those whose hope is in him,
    to the one who seeks him;
26 it is good to wait quietly
    for the salvation of the Lord.  (Lamentations 3:25-26)

And let us not be weary in well doing: for in due season we shall reap, if we faint not.  (Galatians 6:9)

And there is more from my own experience in life.  Waiting on the Lord in the past was where my faith in Him was strengthened.  I remember a time when the crisis was so severe that the Pastor and Elders in my church kept asking me how I was doing with the basics of life:  eating, drinking enough fluids and sleeping.  Yes, they were all a struggle.  By the grace of God and many good sojourners I got through that season of life with sweet victory.  And here I am again in another . . .

March 26th is the day that Steve and I hope everything will start to change for the better.  As written in the potato chip blog, we believe that a dental procedure will vastly reduce if not eliminate the hours of daily convulsive episodes.  Yesterday it was on and off for 24 hours!  You know it’s bad when you see stars and are gasping for air.  Despite nearly a hundred episodes, somehow I read a book while in lying in bed.  It served to protect my mind from dwelling on the wretchedness when I could focus.  I am hoping it preserves a few of the neuronal synapses in my brain from damage.  And focusing despite the pain does carry me through the daytime, the nighttime.  Talking to Jesus a lot is a given . . . .

Thirteen more days and this hell could be over.  In one month will be the 3-year anniversary of when the tics began while thinking I needed to treat a clinical diagnosis of Lyme disease with a fancy Rife machine.  The Beam Ray was a mistake for me.  It has taken 3 long years and many failed attempts at various treatments to figure out what is causing the tazoring of my central nervous system.  Lord willing with removal of the source of what could be “dental galvanism” in my head, I will begin to heal from so much.  And so in my weakness I rest at the throne of grace that delivers me each day unto the next.  Lord willing, I am going to get well.  Off in the distance is the hope of this new beginning for me and my beloved, Stevers.  We are hopeful that His goodness awaits.

Gentle Reader:  Just wait for the shining glory of His light through the words on this page as that day comes.  Are you ready for it?  Brace for impact!  It’s going to be a good day real soon!  Like the old Barbara Streisand song goes, “there ain’t no tellin’ what a satisfied woman can do!”  ;J

The 5 1/2 hour window of time

Ready to head home with the 24-foot outrigger and ama on the roof!
Ready to head home with the 24-foot outrigger and ama (float) on the roof!
So grateful to be out with my River Bear!
So grateful to be out with my River Bear!

 

We came to a clearing in things and went for it!

These pictures were taken after a wonderful evening paddling our tandem outrigger canoe (OC-2) on Sylvan Lake here in Indiana.  How wonderful to be out on the water for a second outing with Steve this year.  I am so very grateful!

Sadly the evening ended worse than the earlier part of this day.  Tic attacks had started in the car on the 45-minute ride home.  Within an hour after getting home and unpacking the car I was feeling sickly.  We ate some quick salads before I scampered off for bed, still in my paddling clothes.  Low grade seizure attacks ramped up over the next hour, escalating into one of the worse episodes I have had in a long time.  Screams of terror filled our home.  The best that I could do was hold on and focus on continuing to breathe . . .

Eventually I was able to call Steve for help getting off the damp clothing and showering.  In my stupor and neurological collapse (requiring complete assistance to transport myself to the bathroom) I figured out that I must have gotten exposed to the blue green algae we encountered in the narrower sections of the lake.  I had taken numerous precautions to limit exposure to the water.  However, some simply cannot be avoided when splashing about, paddling from an open cockpit of an OC-2.  And perhaps the slimy green pond near the port-a-potties in the parking lot were releasing aerosols that were not to my liking as well?  I didn’t touch any food or the mouth of my water bottle since we did not have hand sanitizer with us.  I guess it wasn’t enough:  I am too sensitive to any form of biotoxin to get anywhere near them in any form until things change.

Thankfully after about three hours I regained motor control of my body.  I was better able to communicate and we processed what had occurred this evening.  Steve agreed that we probably need to limit paddling together to waters treated for algae, such as the private lake of a friend’s home.  This means not being able to join the local kayaking group outings on Tuesday night for the third year in a row!  That’s a major bite in the shorts!  To get strong enough to go out with them for two years was a major accomplishment for me and lasted until I got sick October 11, 2011.  Just getting into a kayak (and now an outrigger canoe, solo and tandem) simply had never happened before I married Steve.  We have so many great memories being a part of the group in addition to his kayaking competitions.  (Goooooo Steeeeeeve!)  Sigh.  And I was really enjoying the switch from a kayak to an outrigger, sporting my carbon-fiber bent shaft paddle too.  So awesome.

Last night I watched most of the video story again of Justin and Christa Vanderham.  Christa suffered from chronic Lyme disease and mold exposure for years before finding proper treatment with antibiotics, supplements, and nutrition.  A fellow sojourner in recovery and reader of this blog graciously reminded me recently that Christa’s illness looked a lot like the videos that I have posted here and on You Tube.  Yes, both our symptoms of distress appear wretched:  intractable pain for Christa and relentless seizure attacks for me.  We both scream at times due to our agony.  In chronic Lyme and biotoxin illness it’s not the exact matrix of symptoms that is so significant as it is making sure you have the right diagnoses and treatment protocols to get well.  We don’t say that we have different illnesses because our symptoms are a little different.  We do say that we both might benefit from similar aggressive treatment protocols if reasonable test data and clinical presentation indicate Lyme or biotoxin illness.  Unfortunately for me, EVERY SINGLE TREATMENT INTERVENTION exacerbates daily seizure attack episodes that average 3-4 hours per day!  I simply cannot survive the treatment protocols of which I am aware to date.  The multiple chemical sensitivities (aka Chronic Inflammatory Response Syndrome) already leaves me largely homebound to try and prevent noxious symptoms.  Lately they are on the rise again (up to 8 hours!) regardless of where I am or what I am doing.  When I take a 5 1/2 hour window of time when the symptoms subside and test the waters, so to speak, I usually pay dreadfully for doing so.  This gal just can’t get a real break I guess.  I keep trying the wrong things.  On the surface, you could say that I am out of options . . .

Regardless, this I know:  my Jesus goes before me and knows the desires of my heart.  He knows that my heart is breaking right now to realize that I can no longer be with my dear husband 2 to 3 days per week when he pursues his sport on the water.  I learned to kayak to be with my River Bear and was delighted to discover that I enjoyed it too (at a slower pace of course!).  My Lord knows how isolated I am when I am home alone because of this illness.  He has provided the safety and security of a lovely dwelling with plenty of time with my Heavenly Husband.  He was my best buddy before I met Steve; He saw me through life changes equally as traumatic all the way to the restoration process in due time.  I’ll be hanging tough and trusting Him with this door closing on open water activities, no matter how I may feel about it.  The fact is that my Lord and Savior loves me more than I can ever know.  He wants what is best for me.  I will wait with great expectation at His throne of grace for His plan for me, whether or not a new door or window opens in due time.  If I don’t lay down my will for His will then I will denounce all that He has shown me of His love for me in the past.  I don’t want to waste all that I have learned.  During those trials is when my faith grew to be what it is today.  That is when the Holy Spirit became real to me, guiding me and comforting me always.  Nothing can take that away from me.  Nothing will.

Gentle Reader, do you know faith in God like this through His son, Jesus Christ?  Please share with me your experiences if you do.  I know it will encourage me to hear from you in addition to other Readers.  Oh and if you could say a prayer for my Stevers that would be great.  He hasn’t been getting much sleep lately.  Thanks a bunch.

Better finish that mulching project in the gardens soon.  Love to you,  Just Julie

Left behind. Not forgotten.

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One of the great things about Facebook is that it is timeless.  Your event lives on after it is posted and no one knows what happened before or afterward just that you were there online at one moment in time.

The wedding of my husband’s son, Daniel, is a great example.  I am delighted to have worn a gorgeous dress to the outdoor ceremony at the Lakeside Rosegarden downtown near where we live in Indiana.  The weather was idyllic:  sunny and 80 degrees with a slight breeze in the abundant shade.  The nuptials were exchanged in front of the fountain and reflecting pools:  the groom dressed impressively in his Marine blues and the bride aptly adorned in white chiffon and satin.  The red roses in her hair were a lovely touch in the regal garden setting.  A small contingent was invited to witness the event early in the afternoon and an even larger one would attend the reception 5 hours later.  In the interim we snapped a myriad of photos then headed off to various restaurants in the area.  A few crashed at their hotel rooms in anticipation of the reception at a restored train station called Baker’s Street.  Surely there would be dancing, eating of gourmet finger sandwiches and cake:  festivities that are the hallmark of American wedding traditions.

You wouldn’t know that the reception is happening right now and I am not there.  I am sitting here in a Polartec sweater, pajama bottoms and my evening dress shoes (as the daytime slides have already made their showing in the soft grass around the park nearly landing me into a wardrobe malfunction!).  This was my comfort garb I selected for a short rest before I redressed for the evening.  Yeah well you can probably guessed what happened instead:  the tic attacks that had begun at the quiet restaurant I selected and enjoyed with select family members escalated into a continuous episode as soon as I lain on the bed at home.  Nope.  No nap just some more shakes.  Crap.  Crap.  Crap.

Just because we have hosted 2 gatherings (doubling the wretched symptoms over these past 4 days), got Skyped into a bridal shower (to minimize exposures to 2 dozen ladies wearing fragrances of all sorts), and attended one of the most lovely outdoor rehearsal-style receptions followed by an equally lovely wedding the next day, why would I be too weak to go to a reception?  “Why” indeed.  All of this celebrating was way too much for me a few days ago!  Such is the nature of Chronic Inflammatory Response Syndrome (CIRS):  a complication of Lyme disease and biotoxin illness.  The fact that I made it this far is a miracle for me.  I am grateful.  And I am also sad that I could not finish the festivities with everyone, dancing the night away in the arms of my beloved.  So my beloved and I did something else instead.

Just before Steve left to join his family for the wedding reception back downtown, I asked him for 5 minutes.

That’s when I put on my other pair of dress shoes so we could dance.  Oh how I love my Stevers.  (We played this song at our own wedding DURING the ceremony, before the Lord and all of our guests 6 1/2 years ago.)  Afterwards with a kiss more passionate than many of late, we parted this evening.  Later I looked at the photos we had downloaded from the wedding and posted a bunch on Facebook.  Clearly there are more memories being created at the reception as I typed.  Oh well.  I had the most romantic dance of the evening right here in our living room.  My beloved will return and all will be right with the world.  Have I said that I love Steve so very much?  My heart broke and the tears came easily as he prepared to leave.  Rest assured I needed to be left behind in the comfort of our home tonight to rest for the eighth large gathering of the week that is tomorrow night:  the wedding of a son of some dear friends of ours.  This evening Steve will have danced with his lovely daughters and mother (here from California).  Tonight it will be his turn to sit alone while his ex-wife dances with her new husband.  So much not the way it should be.  I’m sure Steve will be fine.

Perhaps another one of those great kisses will be coming my way a little later?  Hope so.  We each do what the Lord calls us to do on a night like this.  At least the pictures are really nice, eh?  Thank you Lord.  How could I ask for more?

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