Our God Reigns!

Seeing this sweet perching of morning doves is such a mixed blessing this morning.  They are able to sit there because yesterday I was able to cut down the massive out branching of a clematis from lower on the trellis.  Also washed the flagstone patio of dirt and some algae.  I should have worn a mask for both projects.  Acute sickness and violent convulsive episodes followed within the hour and at the beginning of a sweet Skype call with my hubby’s son and family.  So sad.
However, the experience was diagnostic in that I am dealing with biotoxin illness now more than anything else.  Also I am tolerating targeted treatments for this for the first time in 4 of these 5 1/2 years of illness.  Lord willing, I am going to get well!
Gentle Reader, let the morning doves portray the hope that I have each new day in my Lord and Savior,  Jesus Christ.  No matter what may come, our God reigns!  Very fitting the week before Easter don’t you think?

JJ 

Treatment Update

outnumbered

The concept of negative numbers to me is as mind-boggling as that of anti-matter.  If something can be measured on an integer scale then I suppose the values could go up just as easily as they could go down.  But when they go below zero, which is nothing, how can anything be less than nothing?

Perhaps the answer depends upon to what subject the scale is being applied.  Ha!  I would love for my personal scale of symptoms to be at zero.  I would love for the intangibles wreaking havoc in my life to be less than nothing as well.  But that is just not how it is.  This past Fall was very bad, indeed.

More days this past Fall than any other time since I got sick over 4 years ago, did I write “Sick Day” on my calendar as the activity that characterized the entire day.  That means that over 8 daytime hours were spent in bed due to an inability to perform any goal-directed activity:  about 3 days each week.  That stinks.  I had three trips to the emergency room when exasperated with noxious symptoms, more variety in the traumatic nature of seizure attack episodes, an increase in triggers of episodes (which were unclear more of the time), and less ability to perform my activities of daily living.  Steve had to physically care for me (from toileting to feeding) about four times each week.  This year was the first time that I was unable to complete both my Spring and Fall clean-up chores for our gardens.  An occasional meal out with Steve has ceased.  There even was a blow-up with my Doc in which he suggested I might work with someone else.  He admitted that he doesn’t know what to do.  Fine.  But who else would that be?

So here is my status:

  • Results of blood tests and stool tests are now pending to identify microbes that may be keeping me from getting well.  Flare of systemic Candida is one possibility.
  • Chronic Lyme disease is back on my radar as a possibility so for these first two items I have started to take an anti-microbial supplement every day.
  • Mercury burden is significantly reduced yet its role in ongoing illness is still unclear.
  • Dehydration is a daily battle regardless of how many fluids I ingest or receive via IV.
  • Continuous daily seizure attacks total 2 to 5 hours every weekday and often increase to 8 hours at least one day per week.
  • Social isolation continues to be a problem.  I am grateful for a weekly Skype Bible/prayer time with fellow bloggers and may add a telephone support group soon.
  • An extremely restricted diet (sugar/sweetener-free, dairy/mold/gluten-free, low oxalate/copper/meat) only becomes more restrictive as time goes on than more permissive.  There are often episodes after eating and I do not know why.
  • Physical therapy has generally helped to reduce neck and other pain yet the 30-minute convulsive episode at the end of nearly every visit is burdensome.  I bring my own sheets and graciously they avoid fragrances around me.  They are saints!
  • Generally I am only able to leave the house for medical appointments, grocery shopping, etc. twice per week, remaining homebound the other days.  Recent exceptions:  two wakes!
  • Physical exercises and activities, including my P.T. home exercise program, are rare due the likelihood of triggering episodes.
  • Travelling, even with our super clean travel trailer, increases sickness too much to bother for awhile.  Setting it up takes me 3 weeks and cleaning it afterwards takes 3 weeks as well!  Oy vey.

So now my pity party is over and I have nothing left to say.  I am praying constantly for the Lord to keep my heart from bitterness yet I fear that I am losing the battle.  Crying comes forcefully during the setbacks and I am concerned that it is more a manifestation of illness progressed to my brain than true grief.  My husband Steve carries the burden of all of this in his own way.  He is a saint and my hero.  Thankfully he has a great support network at church and work, his athletic activities, and lots of social outlets to keep him going.  Steve is an amazing man surely one after the Lord’s own heart.

I am hopeful that the anti-microbial treatment will help me; sometimes it even stops the episodes.  Yeah God.  However I am very stressed about the upcoming holidays.  Maybe there will be a “Christmas miracle” at our house too?  Lord willing, the numbers in my life will improve in a positive direction.  In the meantime I will be hanging tough.  It’s the best I can do.  JJ

senior numbers

Let the numbers tell this story

While the numbers in my college statistics courses were fascinating and I applied them well in my Master’s thesis, I must admit that math was never really my forte.  I’ll blame it on Mr. Courtright!  Our Algebra II/Trigonometry course in high school was a constant source of frustration!  John and a couple of the other male students would pour over the text book with him at the front of the room trying to understand the lessons he was supposed to be teaching that day.  Yeah, you got that right:  high school seniors trying to figure out advanced mathematics on the fly!  I am so very glad that I never again had to sit through a traditional math class after that one!

Statistics are a different genre though.  Statistics often tell a story that we can use to make sense out of the stuff of life.  For example, landing one standard deviation from the mean (the average) in a bell-shaped curve can help us feel like things are going to be o.k. most of the time, in the right scenario of course!  Enter here special numerals applied to my recent trip with Steve to Georgia and South Carolina that will tell this story better than I can even without a calculator!  Oh how I wish some of these were more comforting than the majority of them though . . .

Over 7 days of camping in 2 locations, I was unable to leave the travel trailer 3 of the days due to illness.

My beloved Steve attended 2 of the 3 family wedding-related activities in Georgia and I attended zero.

We travelled over 2,000 miles in my truck with our 67-pound German shepherd, Elle, settled sweetly behind the jump seat of the King Cab.  Such a great traveler she has become!

I prepared about 96% of all of my own meals making this trip more of a “business as usual” affair than vacation in the realm of food.

One hour of the five that I spent in our friends’ home on Monday was spent in continuous convulsive episodes on their couch.  Thankfully the two young children had already gone off to bed when I crashed; graciously the three adults prayed over me for the Lord’s tender care as we all go forward from the significant stressors in our lives.

The kids and I planted 32 daffodil bulbs the morning we left South Carolina, overplanted with dozens of anise hyssop seeds.  Hooray!  By Springtime the view from the kitchen window of their log cabin will be alive with flowers interspersed amongst the numerous towering pines.

daffodils, mini daffodils, buttercup flowers, Spring flowers

A threatening wind storm with gusts up to 40 MPH forced us to leave a day early for safety towing our Camplite on the highways to get back home.  Just a few minutes after we arrived home at 4:00 a.m., the winds increased again closer to the estimate of 50 MPH by morning.  We had blown in just in time, praise the Lord!

Nearly 4 days have passed since we got home and I have yet to clear out, clean out the rest of the trailer as needed after a week of travel.  Steve completed the first 5 loads of laundry and about 3 more are left to go.  I have been sick in bed for most of the past 3 days, sleeping in late to recover from the nasties which characterize this wretched illness.

Over a dozen doses of a new anti-microbial treatment (Biocidin LSF) have brought both relief and a flare up of symptoms at times:  begun when travelling and continued back home when seeking a new direction, new relief, new hope for a future without illness.  Two violent convulsive episodes followed on Friday after an appointment with a new specialist and a new lab test, respectively.  Many more filled the 2 days that followed.  Perhaps this week (and 2 weeks shy of the 4-year anniversary of the first waking seizure attack) there will be an answer to end this suffering?  The odds are wearing thin lately for sure.

Yet through it all, I am reminded of the 3 days that my Lord and Savior, Jesus Christ died and paid the price for all the negative numbers, the heartaches from what is not right in our world.  He knows the mathematics of it all greater than I can ever imagine and holds it all tenderly in the palms of His hands, ready to redeem it for good when He comes again in glory.  I choose to believe the promise that His precious thoughts towards me and you too, Gentle Reader, outnumber the grains of sand on the earth (Psalm139), giving us hope for a better tomorrow.  For as He thinks fondly of the ones He loves, He also promises to wipe away our every tear someday (Rev 21:4) when the time is right:  when time is no longer numbered in eternity with our Heavenly Father, God.

And that my friend is a story worth writing about.  A world without limits.  A love beyond measure.  I just hope that when all is said and done, when it is time for rejoicing in the heavenly realms, that you will be there with me there too?  Let not these numbers be wasted!  Won’t you accept the love of Christ into your heart this day, this night too?  Oh how I hope so dear one.

With love, 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

I am sure of it

 

Multitasking cartoon

Unlike the brain fog of this cartoon, I am going to get well.  I am sure of it!

The second week into the use of an atypical chelating agent (Zeolite by Zeo Health)  for very high mercury levels has brought more moments of mental clarity than I can ever remember in my entire life.  Oh sure there are ongoing seizure attack episodes yet they are generally 50% improved overall!!!!!!  I could not say this after any other treatment protocol attempted these past 3 years.  I could not say this even after the initial relief from high CBD hemp oil (the industrial hemp counterpart to cannabis oil).  I could not say this after antibiotics or Rife treatment with the Beam Ray.  I did not say this after (27) IV infusions of magnesium last Fall.  I could not say this after extensive and expensive mold remediation in 2013.  Even after aggressive treatment for candida over 2 years, I could not say this.  But I will say it again:

I AM GOING TO GET WELL!!!!!!

There is only one person to thank for this new direction:  the Lord, Jesus Christ.  At a time when multiple factors have come together at last, the path has cleared and hope is restored over here because of His mercy and grace.  A key factor in this process is humility.  More on that in a moment.  I also want to thank my chiropractor:  Dr. Lee Nagel at DeKalb Chiropractic Center in Waterloo, Indiana.  He had a hunch early on in my care that I was suffering from mercury poisoning.  After all, two hair analysis tests revealed mercury and other heavy metal toxicity in the year 2000 and again in 2011 but both times my respective Family Practice Physician (FPP) minimized the results.  Both times the Dr. thought I would be unable to tolerate a special type of detoxification protocol called chelation that would be required to remove heavy metals.  So off we went each time in another direction instead until my life of hell began with viral hepatitis October 11, 2011 and escalated into daily seizures beginning in March of 2012.

Dr. Nagle had high mercury levels discovered by his cardiologist.  His health improved after treatment thus placing mercury issues on his clinical radar.  Dr. Nagle, father of three, is one of the most adventurist and athletic people I have ever met (behind my beloved Stevers of course!).  His chiropractic practice rarely includes medical testing but he made an exception with me.  Thank you!  It took a month to get the testing protocol right then the results revealed the shocking reality of a probable root cause of illness for me:  very high mercury levels.  (Please refer to this excellent summary to learn more about this devastating substance.  Original citation available upon request.)  After a false starts with a quack-y Dr. who claimed to provide chelation, my current FPP is guiding me in the use of chelation and increasing other gentle methods of detoxification that have worked well for me.  By the way, my FPP has also recovered from mercury poisoning that almost took his life!

All of this is very humbling after 3 wretched years of illness and 23 years of chronic pain aka fibromyalgia.  While I do recognize that I have a new, long course of treatment ahead of me, I am exceedingly grateful to discover a root cause of much of my suffering.  Holy cow!  A successful outcome could help more than the seizures.  Yeah God!  Both Steve and I are really hopeful this time.  And it is with mental clarity at 4:30 in the morning that I write this to you!  So grateful for the 3-hour nap earlier tonight.  Yeah, the weird sleep schedule continues a bit!

And now about humility.  These entire three years have presented challenges requiring me to trust God for everything up to my next breath.  I submitted to the loving care of my gracious husband as he needed to carry me to the toilet a hundred times; help me to shower, feed or dress me when I could not about once per week; carry me to bed often so he would be near as he tried to catch some sleep before work,  rush me off the emergency room FIVE TIMES, and so much more.   Oh Gentle Reader, have you sensed that I am a recovering Type A personality?  A first born of my siblings in my family of origin?  That I started working when I was 16 years old with babysitting jobs before then?  That I am capable of taking care of myself thank you very much?  This is the longest and most extreme period of need that I have ever experienced.  I have had to let go of everything during these past three years.  At another time I will write about facing death when my breathing would freeze multiple times during seizure attack episodes.  And with all of this, I did not die of embarrassment or lack of oxygen.  My Heavenly Father and earthly husband have carried me through to this next season of recovery.  I AM HUMBLED!  Thank you seems too small.  I love you both!

Briefly, there were two other tasks I believe needed to be completed during this time:  1) learning to depend completely upon my husband for material needs and 2) realizing that the little activities I got to do here and there would become new skills, new relationships, and new activities that would become my future.  Both were tasks that probably would not have come without grounding in Jesus Christ or needing to cope with the crises of severe illness.  I probably would not have seen so clearly and (hopefully) fully submitted to the incredible character strengths of my beloved had I not become so broken.  Steve is my spiritual leader and head of household and I am grateful.  Long before we met I know what it took when my life fell apart in 2003 to soften me into the kind of woman that my beloved would choose to love.  I now see more clearly what kind of man the Lord has provided for me to love in return.  I AM EXCEEDINGLY BLESSED!

So join me, if you will, for an amazing adventure of recovery from serious illness.  IT IS HAPPENING!  So much fun awaits!  Thank you for riding along with me.  May we both praise the Lord for the good that is here now.

Hope is a good thing, eh?  I am sure of it.  JJ

Psalm 62:5-8 (NIV)

Yes, my soul, find rest in God;
    my hope comes from him.
Truly he is my rock and my salvation;
    he is my fortress, I will not be shaken.
My salvation and my honor depend on God;
    he is my mighty rock, my refuge.
Trust in him at all times, you people;
    pour out your hearts to him,
    for God is our refuge.