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?!    :]


Easter Then and Now

Psalm 130

A song of ascents.

Out of the depths I cry to you, Lord;
    Lord, hear my voice.
Let your ears be attentive
    to my cry for mercy.

If you, Lord, kept a record of sins,
    Lord, who could stand?
But with you there is forgiveness,
    so that we can, with reverence, serve you.

I wait for the Lord, my whole being waits,
    and in his word I put my hope.
I wait for the Lord
    more than watchmen wait for the morning,
    more than watchmen wait for the morning.

Israel, put your hope in the Lord,
    for with the Lord is unfailing love
    and with him is full redemption.
He himself will redeem Israel
    from all their sins.

Indeed He did redeem the nation of Israel as well as those of us adopted as sons, daughters into the nation of Israel.  When we stress about the sufferings of our days we can remember that the Lord is with us, redeems us, and will come again in glory for us all because of what happened one Easter morning long ago . . . .

These words encourage me during the most wretched of nights, which come every night.  These words encourage me as I witness the life that has drained out of my brother’s body since his stroke this past weekend.  These words encourage me as I ponder all of the loss and heartache during my half-century on this earth.  These words encourage me as I see His grace and mercy in the loving eyes, the comforting touch of my intended beloved who loves me so.  These Words are the Living God made real in my heart;  transcending this life and drawing me to my life everlasting with my Savior.  Because of Him I can see the blessings around me which hint at the life, the hope beyond.

No matter where you are or what life is handing you, Gentle Reader, be assured that His love extends to you too.  Easter Sunday is a celebration of the Lord’s perfect love.  He came from the utopia that is heaven to live as a pauper, suffer a tortuous death, and returned in glory when no one was expecting it.  We would not and can not do what He did for us.  And as we believe in the living sacrifice of the Lord Jesus Christ, we are redeemed.  Sorrow is replaced with joy from deep within our hearts.  All things are made new.  While my “outer man” is wasting away, my spirit is renewed day by day and will continue forevermore.

I look forward to the part of this journey beyond this life.  In the meantime it is my honor to say to you:  Happy Easter Gentle Reader.  With love, Just Julie

We all have but one past

“We all have one past, but many possible futures,” stated Canadian hockey player Guy LaFleur, in an interview at his retirement (as quoted in the February 2014 newsletter of RZIM ministries).

24 However, I consider my life worth nothing to me; my only aim is to finish the race and complete the task the Lord Jesus has given me—the task of testifying to the good news of God’s grace.  (The apostle Paul speaking in Acts 20:24)

Let your eyes look straight ahead; fix your gaze directly before you.  Give careful thought to the paths for your feet and be steadfast in all your ways.  (Proverbs 4:25-26)

Oh to be able to empty myself of yesterday and walk forth into tomorrow with great expectation!  To live in the moment with hope that what comes will be filled with the Lord’s tender mercies and grace is to really live freely in Christ.  And to know that the struggles of the day will work itself into a beautiful tapestry of my eternal life that has already begun, well, that’s really head-y man!

When I was researching yet another new dietary approach to the illness I endure, I realized how many times I have done this work before.  Over and over again I have sat here at our computer and continued to research solutions to the treatment failures in the past.  I admit that the new ideas don’t always come from the Lord, however.  Who else would come up with a way to make turnips to fit a Candida, mold-free, and low oxalate diet?  (Chuckle.)  I believe it is the Lord who inspires the best of what comes from me through the Holy Spirit and then provides just enough energy to get me there.  For example, I had an unexpected, Divine appointment with a friend who happened to be in the lobby of our doctor’s office on Friday.  She needed prayer badly!  The Lord in his mercy used me to step out in faith and pray with her right then and there.  The fellowship moved each of us.  The moment would have been missed if the Lord had orchestrated the events for me to leave the building just a few minutes earlier or later . . .

But really, until I started writing this I always thought that deep down inside I was someone who carried the events of my sordid childhood on my sleeve.  My utility to this world was somehow limited because of my past.  I thought that the facts that I came from a broken home, witnessed and experienced abuse, grew up lacking basic provisions at times, and didn’t find Jesus Christ until I had spiraled out of control as a young adult limited who I would eventually become someday.   Even if my outward appearance showed a measure of success, the inner woundedness kept me from enjoying it.  For example, I have had to remember to smile:  the joy just isn’t there a lot of the time to beam out from within me.  This should have changed when I found Jesus and entered into a personal, saving relationship with Him.  He redeemed my sin and began to fill the emptiness in my heart reserved only for Him.  Why wasn’t it enough?

I’m not sure I have the answer to that just yet.  I do know that sometimes we are our own worst enemies, eh?  We get in the way of what the Lord has planned for our lives, the opportunities he places before us and noticing the lovely little niceties he sprinkles around us to show us His love.  His love is always around us.  It’s my opportunity to let more of it dwell within me and let my eyes find it around me too.  And when that happens, more of Him flows through me to others, to my work, to my walk in this life with Him.   I can see that it is happening despite my weakness; I just haven’t recognized it enough.  I’m worried about appearing humble and making sure I “keep the gate closed” on the sordid remnants of my past.  Maybe I don’t need another few years of psychotherapy to figure it all out.  I just need to wait on Him.  He is leading me more than I realize!  And if that means anything to you, well let’s give God the glory!  Like Patsy Clairmont says in her book of the same title, God Uses Cracked Pots (1991) like me.

We all have one past.  Healing the hurts from our past requires grieving, reflection, restoration, and the passing of time.  But carrying it around and letting those wounds drag down the current day that has enough challenges of its own is a mistake.  Cut the ties to the past and live mindfully in the present.  Don’t deny who you are or your unique story.  Tell it to others who need to hear . . . talk about it with your heavenly Father who has sustained you to grow you into the man or woman you are today.  The possibilities of an amazing future awaits, adventures big and tiny, and we don’t want to miss them do we?

Say, I saw a gathering of robins (that signal the first sign of Spring in the Midwest) playing in a couple of feet of snow the other day when I was coming home from that doctor appointment.  I was exhausted as I turned the corner in my truck and some yucky stuff happened later that evening.  All of these events were in the mix of the activities of my day.  The bottom line is that the robins are back!  That is just sweet enough to warm my heart and the tips of my fingers in my fingertip less gloves as I type into the wee hours of the morning (until it’s time to take my final saliva sample for a lab test at the correct time interval, that is!).

Talk about cracked pots . . .  JJ

Best to Hang in There When “There” is Unknown Territory

With a brain fog or spaciness that defies definition, I humbly submit this blog update!

Tuesday began 2 doses of a promising new treatment for Chronic Inflammatory Response Syndrome:  vasoactive intestinal peptide or VIP.  The first dose was at noon and the second was at midnight.  I felt a little on edge as I went to bed within the hour of the second dose, followed by a few tic zips (such as the norm for me these days!).  What I didn’t expect next was the fearful images that passed before my eyes as I entered sleep mode.  No problem, really.  That’s what prayer is for and I called upon the Lord to sanctify my mind.  Prayer answered.  I was able to fall asleep without any more problems.

My next surprise came with an abrupt wake up at 4 in the morning with a vivid nightmare!  When I say vivid, I mean that the bats in my mind were landing on me, in color and I could feel them!)  Frightful indeed!  Low grade tics quickly escalated into seizure attacks, air hunger, shortness of breath, and at least 20 minutes of rotating noxious symptoms.  Not sure which was worse:  the nightmare or the aftermath!

I have had nightmares and this type of experience before.  The last one was at least 2 weeks ago so the timing may or may not have been related to the new medication.  After all, the pharmacist said it was a “benign” drug and my LLMD said that 50 mcg is a low, loading dose.  Yeah right.  I am overly sensitive to everything right now so it is no surprise that a nasal spray of a new hormone, deposited directly into the capillaries in my sinuses and leading into my blood stream, could shake me up a bit.  Sigh.  No problem again.  This is familiar territory.

Wednesday I decided to take a break from the VIP when I awakened feeling pretty beaten up.  For my daily treatment I just ran some Rife programs, slept some more and had a pretty good day overall for me.  The post-attack headache subsided and I was able to take care of a personal appointment and run a few errands.  I forced myself to get out and work in the garden later and it was soothing therapy.  I praise the Lord for His gift of Spring renewal here in the Midwest.  I love living here.

I took the next dose of VIP on Thursday at noon.  My nose started running right away but this didn’t last very long, thankfully.  Then brain fog settled in followed by a ramping up of my nearly constant companion of a low grade headache.  Regardless, I got going on some insurance matters that have needed attention for over a month.  Guess I’m at the next tier of taking care of things since moving home March 27th;  I was glad to “getter done.”  The day was going fairly well so I got to go to church with my hubby for the National Day of Prayer Service at our calvary chapel.  How sweet it is to worship with my Stevers, to pray, and to fellowship with other believers.  It had also been about a month since the last time I was able to go to church.

The worship was awesome.  However, during the service the music was sooooo loud, and the bass was soooooo loud that both of us had to plug our ears even though we were sitting in the back of the sanctuary under the balcony!  Turns out that plugging my ears is not enough to avoid sensory overload.   I cannot tolerate the vibrational sound energy and bass wavelengths of loud music.  I do not understand why it has to be so loud anyways?  We are there to worship the Lord Jesus Christ, not hurt our ears!  Unfortunately, things did not go well after I returned to wait for Steve in the car. I had to get out of there before the spill-over into seizure attacks would begin.  The music was the trigger that turned this multi-sensory-sick child of the King into what would turn out to be a 12 1/2 hour episode of seizure attacks.  As rocker Alice Cooper once sang, “welcome to my nightmare” once again.

Gratefully I was able to get out of the car by myself when we got home and walk gingerly into the house.   Gratefully Steve was available to help lift me off the couch two hours later after eating and resting, so I could get ready for bed.  Gratefully I was able to attend to my own self care and even make us some food earlier during one of the breaks in the action.  Gratefully I have some new positioning strategies in bed to minimize the impact the uncontrollable shaking has on headaches and other painful areas.  Gratefully Steve prayed for me both before we fell asleep and in the morning before he left for work.  Gratefully I was able to make a snack when I woke up ravenously hungry at 4 in the morning!  Hmmmm.  There’s that “4” number again.

The attacks tapered down by the time I was to finally get out of bed at 9:30 a.m.  Just a quick jolt welcomed me to my day and I was able to take care of myself and our dog.  Once again I was pretty beat up by the events of the last evening.  Twelve and one-half hours had passed since the episode began and it was finally over.  The shell of the person that is Julie was leftover to slowly get going, make my special dietary items, and take care of the stuff of life before my afternoon physical therapy appointment.  Gratefully I was able to start then later finish and mail the jewelry order that was due today.  But in the middle of the day and during physical therapy, there was another rebound episode of neuromuscular events followed by copious tears.  I am so sad.  This is really hard.  I am really broken.  Gratefully my therapist is trained in some calming techniques of myofascial release that work really well with me.  Even at my low energy level with soreness all over my body, I am now able to function again.

So this is chronic illness and the ups and downs of recovery.  One day you are excited for a promising new treatment and the next you are herxing from a reaction to the promising new treatment.  The physical therapist says that the seizure attacks seem “softer” than the ones I have had in the past.  O.k., I guess that’s good.  Maybe it is just part of the process of assimilating a new drug that crosses the blood-brain barrier and into a zone where illness has a foothold at the moment.  Sure is a tough road, I’ll tell ya.  Recovery is not for wimps.

At this point is usually where I write about my faith in the Lord Jesus Christ, sustaining me and giving me hope in the face of severe testing and trials.  If you’ve read this blog before, you probably know what I am about to write here.  You might expect me to say what a difference it makes to have Jesus in my heart or I would be filled with despair.  I usually say a lot about His sustaining grace as I truly believe that my life and these experiences are for my ultimate good and His glory.  Yes, I am softer in many ways than before this illness began.  This suffering will end someday.  I know where I will be when it ends.  Do you?  Do you know where the trials of your journey through life will lead you when your life ends?  If you do, does  your life show it?  Oh I hope so!

If you have not turned to the Lord as your Saviour, lover of your soul, forgiver of your sins (and you all have them, sorry folks, no one is perfect), and hope for all of eternity, then  what the heck are you waiting for?  How many blogs do I have to write about suffering before someone out there that isn’t saved gets it:  the meaning of life is not all about YOU, it is not all about ME.  It is all about HIM.  It ain’t about a religion either.  It is about a relationship with the God of the Bible.  Until we are given an eternal perspective that He provides and transcending joy that He grants beyond measure when we but believe in Him, all we have is our fallen human condition.  Now that is sad indeed!  Our problems will never all be solved in this life.  We will hurt.  We will lose things and people and places that we love.  Our experiences will be a mixed bag at best.  We will fall short of the peace we seek when we realize that in the end, the stuff of this life adds up to dust, to nothing at all.  We can’t take anything with us when we die.  As the wisest, richest king that ever lived (King Solomon) once said, it is all meaningless!

Yes, it is best to hang in there when there is unknown territory.  I am taking Jesus Christ with me.  My eternity began when I accepted Him into my heart as Lord.  Oh gentle reader, will you too?

P.S.  Going for a walk with my pup, a friend and her pup.  God is so good.