Obedience

Obedience is one of those words like “discipline.”  Not popular either one of them, yet both separate the whining cry babies from the mature adults amongst us.  For believers in Jesus Christ, obedience matures our faith and transforms us into the image of Christ (a work never completed during our lifetimes).  In our humanity our flesh tugs at us to rebel or be tempted in directions other than the leading of the Holy Spirit.  But by focusing on His incredible gift of grace, studying His holy Word, and submitting to the leading of the Holy Spirit we will end in a better place for sure.  I have seen it in my own life and in the lives of others.  His will is best.  His timing is best.  Why?  Because He loves us and because He is God!

These thoughts came to me after reading an interview of Ravi Zacharias in the RZIM Summer 2015 newsletter and listening to a message by Pastor Paul Mowery of Harvest Fellowship in Leo, Indiana.  At the close of his message on Romans 11, Pastor Paul encourages us to “be about worship,” praising His great name for having mercy on us as recipients of the Lord’s grace.  We are not to dwell on what each of us may have done that draws attention to ourselves.  We are to be about Him: worshipping our Father God.

Lately I am struggling with these themes.  Many of my posts here have tried to pull something meaningful out of the challenges of a wretched illness.  As the days wear on with the setbacks of late, I have found myself literally screaming out my anger at God with the wails that accompany the convulsive seizures.  “Why do you hate me?”  Oh yeah, it’s bad.  Even my beloved Steve who has been at my side during a fair amount of this hell admits his anger at God.  And we are convinced that this is an o.k. thing to do.  It is not an o.k. place to stay, however.  And it is certainly not an acceptable attitude to act upon.

You simply cannot be angry at someone whom you do not love dearly.  Such is our dilemma.  We both love the Lord, Jesus Christ, and are humbled, grateful for His mercies in each of our lives.  We have so much goodness between us!  We are grateful for so much!  And in our humanity we are broken and don’t like the brokenness.  Way down deep we are hurting and it is this hurt that fuels the anger.  Admitting this will be the way out, the way back to fellowship, the discipline that will bring obedience, the song of worship yet to come . . .

So, as the Holy Spirit says:

“Today, if you hear his voice,
    do not harden your hearts
as you did in the rebellion,
    during the time of testing in the wilderness, (Hebrews 3)

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Therefore, holy brothers and sisters, who share in the heavenly calling, fix your thoughts on Jesus, whom we acknowledge as our apostle and high priest. He was faithful to the one who appointed him, just as Moses was faithful in all God’s house. Jesus has been found worthy of greater honor than Moses, just as the builder of a house has greater honor than the house itself. For every house is built by someone, but God is the builder of everything.  (Hebrews 3)

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being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.  (Philippians 1)

Today with the faith of a mustard seed (that I understand is rich in nutrients of which I am needing anyways!) I will choose to honor and worship the Lord, my King.  He has built this frame in which I dwell and within it dwells the Holy Spirit.  Broken or not, it is the vessel from which I will praise His name all of my days.  I lay my angst on His mighty throne of grace, with great expectation of His promise to redeem it for His glory.

obedience, endurance, waiting on the Lord, discipline, redemption, redeeming grace, redeem

May He be glorified in all.  My Jesus.  My all in all.  Worthy of our praise.  Worthy is this Lamb of God!  JJ

Just Julie Treatment Update

Brief update:  I seem to be in what an airline pilot might call a “holding pattern” lately.  When I can break through the perpetual feeling of sickness and get myself out of the house, even if it is to our backyard, there’s always a backlash of noxious symptoms.  Recently my chiropractor recommended a heavy metals blood test and after a month of getting the paperwork and procedures right we have the results:  high potassium and very high mercury.  Yipes!  So my husband and I are investigating chelation therapy.  I have an appointment with a Doctor of Osteopathy who provides chelation and other medical, nutritional interventions.  In the meantime I’ll check with my family practice physician and see if there’s enough data to proceed with caution.  We will be covering this in prayer.  For most folks chelation is a difficult journey.  But hey, I’m familiar with that already, eh?

More details:  The daily 2 to 5 hour waking seizure attack episodes continue.  One day each week the episodes exceed 8 hours on and off during which I am largely bed bound.  If I have pushed myself to complete heavy gardening tasks or more than about 2 hours of appointments outside of our home then the episodes can increase to 12 hours.  The rest of those days is pretty worthless.  I have at least two “worthless” days at home each week anyways, regardless of my activity level.  These are days where I pretty much take advantage of the lovely “3 hots and a cot” afforded by our home.  I may see you here at the computer and mope through other very sedentary tasks.  Dinner may or may not get prepared.  Thank goodness for my homemade freezer meals and frozen burritos for Steve on days like these!

The normal sleep-wake cycle remains elusive for me.  When I do go to bed around midnight it is usually because Steve has carried me there in the neurological collapse-mode of a seizure attack.  This happens twice per week.  I’ll pass out at some point thereafter only to awaken in less than 4 hours, usually with another episode of tazoring.  Many days the tazoring wakes me up in the middle of the night.  Good grief!  That’s what happened last night prompting this blog.  When I do wake up in the middle of the night I have to find a way to yank myself out of bed or they will continue indefinitely!  This also happens twice per week on average.  The other nights I endure an episode sometime between sunset and midnight then I am wide awake until 4:00 a.m. or so.  If I can wait until I feel sleepy then the episodes falling asleep will usually be shorter and sometimes not at all.  I love it when the latter happens!  The best schedule for me then is to be up late, go to bed and sleep until noon-ish, endure a shorter waking tazoring then attempt to move forward with the day.  I love days when I do not have any appointments that disrupt this schedule!

The only “treatment” I can tolerate at the moment is a strict diet, coconut oil, colon hydrotherapy to detox, and extreme mold avoidance.  Occasionally I can take a short walk late in the afternoon or use our elliptical for 5 minutes, usually in the middle of the night before bed.  My diet is mold-free, gluten-free, sugar and sweetener-free, dairy-free, and low oxalate.  The latter has produced some detox reactions that appear to be beneficial; bone broth is incredibly nurturing to my digestive tract.  Most medications, pharm-grade supplements, and typical detox/immunity foods (such as lemon water, probiotics, ground flax seeds or oil) produce convulsions.  Not good.  This syndrome has a name:  Chronic Inflammatory Response Syndrome or Multiple Chemical Sensitivity.  The good news is that my gut health is better than it has been in a long time.  That tells me that the dietary strategies are working!  There are times when I feel more alert and my thinking is clearer.  At times my memory is better.  To my delight the creative juices are flowing again as reflected in my latest designs at Trinity Jewelry by Design.  And sometimes I am even able to make jewelry during the daytime instead of just with the crickets outside the window of my cute little studio area . . .

October 11th will mark the 3 year anniversary of becoming sick.  (For more on that story, see the About Julie page.)  I’ve been off from work for 2 1/2 years now, the longest since I started working in at the Penny Candy Place as a teenager.  No work or disability income is in sight.   The Lord has provided for my every need through my gracious husband and His grace.  Through it all Steve and I have been challenged to the ends of our human strength through unbelievable trials yet somehow feel closer to each other and to the Lord than ever before.  Steve is my hero!  DSCF0245We trust in Proverbs 3:5-6, Psalm 41:3Psalm 71:14, Revelation 21:1-8 and more.  The Lord is faithful to His Word:  we have seen it, we hope in it, and His living Word carries us through it all.  Even in those split seconds when it feels like my heart, my breathing, and my brain waves have ceased to function and I do not know if life will continue for me, I am no longer afraid.  That’s how real the hope of heaven, the reality that my eternal life has already begun as a child of the King, the loose grip I have on the things of this earth are to me.  Oh Gentle Reader, can you say that too?

So many unknowns fill our days.  We can respond with woe and fear or we can respond with FAITH.  And our faith is only as strong as that to which we apply it.  I hope that you will join me or have put your faith in the omnipotent God over all.  Yes, I wrote all. 

Nothing less will do when faced with the next, er, bite in the shorts.  You know I had to say it didn’t you?!    :]

 

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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When you find your voice again

Perhaps it is a silent presence, a type of mindfulness that can speak as loud as a mountaintop yodel in a life-changing moment.  Or maybe you must shout it out, screeching through a resistant case of laryngitis just what is on your mind.  Then there are those measured words spoken through gritted teeth; oooooh, I hated when my mother uttered those when I was a child!  A crazy person makes sense only to his or herself when the disemboweled utterance emerges from the trouble soul within.  And the most agregious is the spine-tingling barbs of an angry person that can cut to the heart every time.  Sure wish I had more of the first one and less of the others in my history!

A gentle answer turns away wrath,
    but a harsh word stirs up anger.  (Proverbs 15:1)

Yes indeed.

The seizure attacks came quickly this evening as soon as my face hit the head of the bed, elevated with folded blankets to promote sinus drainage and ease the chest compression of a recent infection.  My left arm was tucked along my left side with my head turned to the right as I lain partially face-down.  This position causes less neck and shoulder pain so it is often my go-to position when I sense the episode ramping up.  The head-banging and shoulder trauma are minimized but the wrenching of my neck is nasty.  Oh well, that’s what the chiropractor is for, right?  Sigh.

Eventually I screeched out some “help me Lord” utterances with what was left of my voice box today.  That came whilst straining to cry out to my Jesus with an acute illness on top of the mysterious seizure-like tics that plague me every morning, evening, and after exposure to noxious stimuli.  I can’t even cry right!  Then things got incredibly darker.  In defense of my sanity I won’t go into details here so let’s just say that frightful images passed through my mind.  Then in my mind’s eye I could see the images on my arms.  Just then I noticed that Steve was stooping over the side of the bed beside me in the dark.  Holy crap!  His sudden appearance in the dark scared me further.  My body writhed with seizures, now lying on my right side with Steve behind me.  My arms flailed in the air, my legs flapped together then apart, and the screeching sound of my hoarse voice screaming holy terror would exceed any scene I’ve viewed from a psycho thriller for sure.  But this was not a movie.  This was ME!

A few decades ago some really bad things happened to me when I was a kid.  I spent about 12 years as a young adult in many kinds of therapy, therapy groups, 12-step recovery groups (Al Anon Adult Children of Alcoholics), faith-based and 12-step weekend retreats, and reading tons of self-help books.  True healing came when I got saved and the person of Jesus Christ showed me his love, care for me, and plan for my life if I would follow His lead.  He was restoring the years the locusts had eaten (Joel 2:25) when I met my intended beloved and married Steve.  I felt happy and free at last.  Four years later I got very sick with viral hepatitis, Lyme disease, and Chronic Inflammatory Response Syndrome (related to mold).  I haven’t been able to work in two years largely due to the seizure attack episodes multiple times per day.  They are heartbreaking for both of us in addition to many other folks who have witnessed them too.

Over and over again I have searched for meaning, a purpose for this extended illness.  The incredible expenses of remediating our home for mold in early 2013 surely tested our marriage for sure.  We were living in a hotel while navigating a myriad of details and tough decisions as Steve travelled between work, home, and the hotel; his daughter chose to continue living in the house and help us out during the entire process.  Eventually our dog joined us in the hotel.  Eventually we completed the remediation, opted not to sell our house, and moved back home.  However, the seizure attacks never stopped!  By summer of 2013 they increased to up to 4 hours per day!  No medical professional or online research has found an answer yet.  Somehow Steve and I grew closer through it all as our hearts were breaking; the pain and suffering has been great.

Recently the Lord did show me a few tasks that needed to be completed in our marriage.  The love between Steve and I over these past 2 1/2 years has become strengthened, deepened because of this difficult journey.  We have now turned our residence into a “safe home” which restricts visitors or the conditions under which others may enter our home.  This helps prevent exposures for me that could cause a negative reaction (aka seizures!).  I love that my beloved is helping to protect me in this way so that I can get well.  I love that he has been faithful to the Lord and to me through this entire journey.  Others are watching us and I understand that we are doing some things right!  My own restoration and healing from the past may have provided a foundation for the important growth in me that has happened of late.  I am grateful to be able to recognize the good that is here along with the challenges.  There is always good along with the challenges if we look closely enough . . .

Back to the scene in the bedroom.  I asked Steve to move from where he was stooped behind me to the other side of the bed where he would be in front of me.  The uncontrollable hell that was ravaging my weakened frame was frightening enough not to have a sense that someone, even someone I dearly loved, was lingering over me from behind.  Steve knows all too well that if he touches me during an episode it can magnify the symptoms significantly.  I just couldn’t risk a casual brush of a hand; my distress was already unbearable.  Then the breakthrough began to happen.  Speaking up despite the hoarseness of my voice rose up some inner strength I had never sensed before.  I had to ride out the frightening images and thrashing about, my estimation of what weeping and gnashing of teeth might be like in a Biblical description of hell.  Tears came.  Silence followed.  I was able to ask for what I really needed when scared.

Soon my gracious and godly husband was gently sitting beside me.  I’m not sure if he was more horrified or moved to compassion!  We processed the scene.  His eyes held mind for a long time in the darkness before I was able to reach out and touch his arm.  Soon he was able to reach out with comforting touch for me as well.  Somehow we knew that my intolerance to intimate touch for the past 6 weeks was finally broken.  I was able to lie in the arms of my beloved once again.

My writing this story includes a great deal of literary and intellectual license.  I mean that I think I might know what is going on, the purpose and meaning in some of this suffering, but there is only one person who actually knows the truth:  my Heavenly Father.  I am glad that I found my voice in the darkness this evening.  I am glad that I survived a wretched scene without too much damage or lingering baggage.  I am grateful to have reconnected with Steve and that he could look beyond the ugliness to the beauty imbedded in this crazy journey together.  I trust that the Lord will go before us in the next scene and lead us in His way everlasting for His purpose and glory.  Lord willing it won’t be so bad next time.

Thank you, Jesus, for your redeeming grace.  You make all the difference in the world for me, tonight and always.  Thank you for your enduring mercy, giving me have the strength to do that to which you have called me (Philippians 4:13).  Be my voice in the darkness and in the light.  In Jesus’ name.  Amen.

 

When death is no longer an option

Who was it who said to “start with the end in mind?”

 

Well the “end” of everything in life as we know it will not be death per se but the second coming of our Lord, Jesus Christ. He will be bringing about the Great Tribulation, reign on Earth for 1,000 years, bring about the death of Satan and the world as we know it, and bring those who believe in Him to the New Jerusalem.  There we will reign forever with the One True God. I can’t wait!

 

And yet wait we must as it is not the time for His return. So working back from this end I will examine a few personal challenges the current day . . .

 

Brother Mike

Incredibly with a remaining part of one of two carotid arteries, my brother is making slow progress (after a massive stroke two weeks ago). As it turns out his progress may still not be enough to keep him longer in a rehabilitation facility. Enter here the plight of the uninsured. Decisions about his care will be made by a team of therapists who are required on Wednesday to make an “educated guess” as to his the outcome of his treatment 2-3 weeks from now. Healthcare policy largely mandated by the US government requires them to make this determination. Today the Lord led me in “buying” him 3 more days after negotiating with the Physiatrist on Michael’s unit. Go Sister Bear, occupational therapist.

 

Overall it looks like Mike will be discharged soon to a nursing home for placement and not further rehabilitation. This would be sad. His beloved fiancé, Lisa, is doing the best she can to juggle her own responsibilities, visit Mike at the hospital an hour away from their home, and complete paperwork/phone calls/research/etc. needed for his discharge planning. He would not likely receive therapy services thereafter until his Medicaid kicks in; when it does start the amount for which he is eligible could be limited. I just hope they get him the proper wheelchair, feeding instructions, and do more than keep him “clean and dry” in a long term care facility. I don’t have high hopes for this at the moment.

 

In time perhaps Michael will be able to receive skilled therapy services and return home. In time perhaps Michael’s eligibility for VeteransAdministration and community services will be determined. To return home he will need to be safe enough to be left home alone when Lisa is at work while she graciously continues to provide for both of their needs in addition to her 13 year old son. We are all praying for them at this incredibly stressful time in their lives. My burden from afar (3 hours by car) is light by comparison. Sure I am making a few phone calls, found a family member with a commode, and am working on locating a walker but that is small compared to his incredible care needs. I do pray that some additional resources appear soon . . .

 

Sister Julie

This past weekend was a tale of two extremes got me. I started drinking Bulletproof coffee this past Friday: Freshly ground-and-brewed, mycotoxin-free, Swiss water decaffeinated coffee with ghee (butter) and MCT (derivative of coconut) oil. Everything gets blended in our Vitamix for a frothy hot drink that is quite good. (Remember, I am used to consuming unusual foods these days!)   I had also begun taking a special formulation of B vitamins from Dr. Amy Yasko’s website to support some nutrigenomic issues. (Since the Functional Medicine MD set me adrift last week I struck out on my own for new solutions.) Saturday was an incredible day: waking up without seizures and enough energy to get showered and dressed before 10:00 a.m. just doesn’t happen for me! By 10:30 a.m. I had joined my hubby in cleaning our garage! Four hours later we were at a logical stopping point with the project nearly completed. We will recycle, discard, or sell either online or at a garage sale a goodly amount of items we no longer need. Ahhhh. Feels good.

 

Then comes the other extreme: almost 2 days with intermittent seizure attacks and bedrest. Crap. I guess I should have worn a mask when cleaning the garage? Maybe I shouldn’t have increased the MCT oil to twice per day? Or maybe the greatly increased activity level was just too much for this tender frame? Crap again. This is such a high price to pay for just taking care of our home. I enjoyed my time working with Steve so very much. I love doing projects with him! It had been soooooo long since our last big deal together . . . except for maybe driving up to Michigan to see Mike 2 weeks ago. Yeah that one took its toll on me as well. Crap, crap, crap.

 

So the worst case scenario for my brother is another stroke or even death. Since he appears to be stabilizing and improving I can set those fearful thoughts aside. I am quite confused about the Lord’s plan for all of this yet I choose to trust Him anyways. And as for my own illness, well, I guess the moments of improvement give me hope for my own recovery someday too.

 

On Sunday I decided to donn my firearm when Steve was selling some items from our home. He had opted to have the buyers meet us at the house. We took some precautions and everything worked out fine. His son, Daniel made out like a bandit (!) and we are pleased to have made it happen for him. But as that 380 pistol passed from my hand to its hidden resting place later that afternoon, I had to pause for a moment. At another time in my life it would have been dangerous for me to have a firearm in my possession. I had not yet learned how to shoot a gun, been taught gun safety, secured a carry permit, or decided for sure that life is worth living no matter what the current crisis.

 

You see I have faced overwhelming stressors in my life many, many times before. One time I had to ask a boyfriend to stay with me because the emotional pain that I was enduring was so great that I did not trust myself with my own life. I feared what I might do if I were to be left home alone. Flash forward about 15 years and that trust was tested once again. Gratefully eight years later, the overwhelming trauma of painful, daily seizure attacks, my brother’s stroke, and so much more is met with a solid faith in the Lord Jesus Christ and His plan for our lives. He is faithful. I trust in His power, His sovereignty over my fear, my pain, my doubt. Overcoming the traumas of the past by the grace of God taught me that. My firearm is for protection and nothing else.

 

When in doubt, I often start with the end in mind. I have always been a future-oriented person which I consider to be both a quality of leadership and a source of considerable anxiety! Perhaps my writings could talk a little less about my vulnerability and a little more about the Hero leading my heart PERIOD. With the God of the universe at the helm of my life I have nothing to fear, nothing to doubt. I will be able to endure the stress and the stress will be less with my hands off the “trigger” that represents a need for action at the wrong time. To wait, to rest and languish in His loving care helps me transcend the suffering. He has held me close in the comfort of His wings in the past and holds me close in the present as well. Many folks yearn to feel His presence. Hey, I get to feel it every day! He makes Himself real to me every single day.

 

Lastly, the greatest manifestation of darkness in this life is death. One day all too soon His glory will replace the darkness with His consuming light. All things will be made new and we who believe will reign with Him forever! My brother and I will be made whole to love and serve our great God. Wow! So I pray:  Lord, help me to live this truth in today with hope and shining Your light for all to see. Thank You for being here with us in our journeys. If the load may be lighter, please bless us with Your healing grace and mercy. Until then, You are our King and praise be Your name, Emmanuel.   Love you, Just Julie