The moments that matter

child with umbrella, boy, boy in the rain, blog about sorrow, overcoming sorrow, rainy day, hope beyoneWhen things are not right or even worse

We cry out to the air and wonder, “who is there?”

“Can anyone hear me on my bed of sorrow?”

“How long will this go on, how long?”

Oh the angst for enduring what simply should not be . . .

I could bemoan much pain in my heart this day:

From my spirit through my tender frame.

But why?  What will I gain by wallowing here?

As I listen to a friend who sounds like me over the waves,

I hear wisdom that comes with her years.

She doth declare that in her own time of prayer

The Lord spoke to her so gently.

In all of those times of suffering,

When surely no one cared He said,

“I was there with you.”

And her heart was full, no place untouched.

So today let’s heed this wisdom

Should we, too seek and hear His voice.

Don’t just want for the pain to end.

Reach into the moment to His love so grand.

Find people with mercy for the darkness of our lives

For we all have a burden to carry, each one.

And let us come together in prayer, in fellowship, in praise.

But most importantly

Kneel at the throne of grace often

In adoration of the Person who sees you always.

For Jesus loves you always.

And turn these into moments that matter for all time.

They will be sweet, and soften the burdens we will endure.

We can go on when held by His hand.

Yes, we can indeed.

JJ

Missing you terribly

There’s a Barbara Streisand song with lyrics that go something like this:

If we had the chance to do it all over again, tell me would we . . .

Could we . . .

The way we were.

It’s not that I would like to go back to my former self or anything like that.  I have had chronic pain for most of my life and lived with pain inside my heart for longer than that.  Many of my own mistakes were downright damaging.  Still other experiences damaged me and it would take until very recently to be free of their dark spiritual underpinnings.  The freedom I experience in today from the drama of yesterday’s trauma was worth the good and bad spent getting here.  But there is one part I am not sure what to do with . . .

I was never really physically fit and virtually always held a critical eye toward my physique even when at my ideal body weight.  All that did not seem to matter to the stream of the male persuasion that came my way, ever since I was twenty years old.  (Not sure what they were waiting for before that!)  I always rode my bike as a kid EVERYWHERE.  I did not think of it as exercise at the time, just a means to get me to the home of a friend.  Several times in college I tried running around the sidewalks of the sprawling campus.  “Library Hill” was a killer!  Maybe I should say that I ran on most paths except the 27 or so degree incline of Library Hill!  Carrying a full load of books up and downhill to class or to study late into the evening at the library should have earned me an extra degree in something or another!

What I miss most is the innocence of moving without thinking about it.  Every day lately brings stark reminders of the convulsions that have returned.  Every day brings a new version of shaking that hurts my neck the most and leaves some version of a headache behind.  Every day the hope of exercising for the enjoyment of it alludes me only because I cannot; I actually had grown to like high intensity workouts before I got sick 3 1/2 years ago.  Even with chronic pain I worked out with weights, unloaded my truck bed filled with sod/dirt/mulch, and kayaked for a couple of hours each week.  I loved being strong.

Today I miss being strong.  The trauma of seizures and convulsions have taken their toll.  The sickness after an episode usually lingers for hours, days.  I never really know for sure when the next episode is coming although the bedtime and waking-up patterns have been fairly consistent throughout this ordeal.  Somehow despite my weakness, I HAVE NOT GIVEN UP for more than a day.  Yesterday Steve and I went for a walk with our pup, Elle though most of the time the walking is through the halls of our home or a medical facility . . . or this past Saturday’s date night to the grocery store.  It’s something, eh?

O.K. so I am bummed out.  I have missed writing and did not blog so as not to bum you out, Gentle Reader, in reporting that the surgery did not stop the episodes as I had hoped.  There are tiny improvements and for these I am grateful.  I think I’ll need a little longer to recover and clear the anesthesia completely out of my system.  In desperation I went on a water fast for 24-hours last week.  It was awful!  Amazingly I did not have seizures until the 24th hour!  I believe the Lord gave me the wisdom through it all to start a ketogenic diet so new research and a new direction began the next day.

A ketogenic diet is a high fat diet where the fat becomes fuel for the body instead of carbohydrates.  The version for seizure control (generally used for children) is unlike the keto diet for weight loss in that fats are consumed more than protein “macros.”  Grams of carbs are the tiniest portion of the three. The increase in ketones are measured in either the urine or blood and thought to be the mechanism that brings some level of seizure control in 25-50 percent of children.  In children the diet begins after a 24-48 hour fast in a hospital.  Hmmm.  My great Physician led me here after my own fasting experience too.  So with the MyFitnessPal nutrition app in-hand, I am moving towards the ideal ratios of fats, proteins, and carbohydrates.  Good news:  that means lots of bacon!  And at least I am off the pureed diet now!

The way we were.  Can it be that it was all so simple then?  Or has time re-written every line?  If we had the chance to do it all over again, tell me, would we?  Could we?

Perhaps the real longing requires me to not look back at all.  Then what is it Lord?  Fill this emptiness, please.  Ease this hurting.  Thank you for new tracks to run on, so to speak.  I still need you desperately to guide me.  I realize that I may not be alone in this desire you know.  Please comfort the Gentle Readers out there who need you too.  JJ

EMU Halle Library with another runner testing his strength!
EMU Halle Library with another runner testing his strength!

 

If I get to see you . . .

 

If I get to see you in the coming year, please understand that I will be singing songs of joy in my heart!  Social isolation has been one of the most devastating effects of serious illness from these past 3 years.  Should the Lord allow the circumstances for me to get out for an activity other than medical or a trip to the grocery store, I CELEBRATE!!!

So if I might ask for a few accommodations when we get together and you graciously oblige and I still get sick then blame any negative symptoms you may witness in me as the consequence of illness and not you!  Very few folks live in a “clean room” like we have here at home.  I did not clean at this level either until it was a matter of survival.  Steve did not engage in my extreme mold/contaminant behavior strategies until two years ago.  These strategies are necessary for this season of our lives together.  Overall I do better when we follow certain guidelines resulting in less reactivity, the worst of which are fewer seizure-like and convulsive episodes which continue daily.  We are implementing some “due diligence” from what we have learned to reduce my suffering with the goal of eliminating this illness altogether.  We believe that the Lord has allowed these trials for mysterious reasons and ultimately His glory.  He is good!

Both Steve and I recognize that there are definite signs that I am getting better.  We have trained our eye to search for even tiny changes in the pattern and intensity of episodes, pain, and reactivity to keep us hopeful that one day I will be well.  It is happening!  So please don’t be discouraged when either one of us might mention that I had a rough night or you witness a significant setback.  Recovery is a long, jagged line of progress, setbacks, and lateral “bunny trails.”  The overall trending is positive!

The most important accommodations that would be helpful if we get together are as follows.

Meeting in a public place:  Select a place with less noise and less loud music.  Newer buildings are generally better than older ones; please no historic buildings or ones with known basements or crawlspaces and history of flooding.  Restaurants that make their own food with fresh ingredients are better able to modify dishes to meet my food sensitivities.  This rules out most fast food places!  Letting me know the name and phone number of the establishment ahead of time will allow me to contact them with my needs and make the experience of ordering food more pleasant for both of us!  Please do not wear cologne or perfume that day.  I will need to greet you and depart with a “virtual hug” to avoid exposures to hidden elements that might be on your clothing or coat.  Forgive me if I sometimes forget this step in the joy of the moment when I see you!

Meeting in your home:  This is still a situation that I avoid since there are too many variables at this time that may cause serious problems.  I cannot come over if you have 1) ever had flooding in your home of any kind from a leaky toilet to a wet basement or 2) have older carpeting.  If you are willing to have me then please remove all fragranced products at least the day before we are scheduled to be together (such as plug-in or spray air fresheners, candles whether lit or not, potpourri, etc.)  Keeping windows cracked open in cooler weather or open in warmer weather to allow fresh air inside always helps (unless someone is burning something nearby outside!)  I prefer to visit in the area of your home without carpeting and sit on non-upholstered furniture.  Wood, plastics, and leather are best.

Staying overnight:  If we are invited to stay overnight then we will either bring our own linens, blankets and towels, or ask that you wash and dry everything in fragrance-free detergent and softeners (including dryer sheets).  Please replace a moldy shower curtain liner with a new one!  I will bring most of my own food and hand soap where possible.  Providing non-cured, non-smoked meat cooked only with salt, plain oatmeal, plain salad-type vegetables or zucchini/cauliflower without seasonings will be a HUGE treat!  I will always bring the extra condiments and food that I can tolerate.

Yeah, I know that this is a lot for a busy household to prepare!  Thank you for helping us out with this stuff.  Steve and I are exceedingly grateful to have recently obtained a travel trailer which has helped manage all of this tremendously well.  (It is a lot of work for us too, I tell ya!)  Both of our families and many close friends now live out of State so travel is necessary to see them.  This single change in our mode of travel has allowed me to leave our home overnight much more safely and go places from which I have been cut off for most of the past three years.  We are humbled and blessed!  I really like having a mobile safe house that has already opened up my world, provided privacy during setbacks on the road, and aided sleep with a really comfortable bed that can be hard to find when away from one’s own humble abode at home.  Thank you Jesus!

Visiting Daniel and Elizabeth in Alabama
Visiting Daniel and Elizabeth in Alabama

 

We are hoping that the ongoing extreme avoidance and dietary strategies are temporary; some level of precaution albeit more relaxed than the current level will likely continue for some time.  How long will we need to do all of this?  We simply do not know.  We believe the Chronic Inflammatory Response Syndrome (or Multiple Chemical Sensitivity) is due to mercury toxicity and we finally have the correct treatment protocols to get me well.  I have excellent medical guidance and a proven treatment plan to follow.  We are hopeful that I will be in better health within this year!  I AM GOING TO GET WELL!!!

And that Gentle Reader, is much to celebrate!  JJ

This could start simply or really complicated

no mercury

 

The short story:

The next step in my treatment of ongoing illness will be a “pre-tox” protocol before actual mercury chelation.  Methylmercury is chelated through the liver and gut; inorganic mercury is chelated through the kidneys.  Since I am hypersensitive to every approach attempted thus far, my doctor recommends beginning treatment with remedies to open up these elimination pathways before beginning chelation.  I’ll probably start with one of the five products recommended by Quicksilver Scientific:  the company that invented mercury speciation testing and this more targeted method of detoxification.

The long story:

After my doctor’s office losing my test results, my pleading with the company to email them directly to me, hand delivering the report to my doctor’s office in the middle of their move from one building to another, cancelling an appointment in favor of a personal phone call on Saturday, and fretting until getting that call with the results on Sunday night, a plan is now in place for me!  We will  need to progress slowly since EVERY TREATMENT I have attempted thus far has resulted in increased seizure attacks and convulsions.  It makes sense to attempt to open up the chelation pathways first for these two types of mercury since I rank very high in both forms.  It also makes sense for me to complete some additional testing of systemic metals to clarify the clinical picture and avoid further toxicity as we proceed.

So I began to research the initial products needed for this “pre-tox” protocol and lo and behold I take issue with four of them!  Three are homeopathic remedies from a very New Age German company that directly conflicts with my Christian world view.  I decided over twenty years ago not to use homeopathic remedies:  why do we need alchemy and weirdness for substances God created in this world for our health and well being?  I have never felt good on any of these products!  I need to pray about this for sure.  And the fifth substance in the pre-tox program is made with an ionic solution of marine plankton.  Does anyone recall that I got deathly ill with viral hepatitis at the beginning of this hell from cyanobacteria aka blue green algae?  Let’s hope that they are not the same thing?  Maybe one is a fish and the other is a plant?  I am frightfully aware of the negative consequences of any biotoxin in my weakened frame . . .

The one product NOT in question is IMD 30x.  While a homeopathic-like preparation, the main ingredient is a proprietary thiol-functionalized silica.  No problemmo.  I can even pronounce the ingredients!  Too bad the company states that it’s best taken with the green water stuff!  Sigh.  You know I’m just a little weary after 3 years, tens of thousands of dollars, prayers, submission, and getting up to struggle through another day until zapped into a painful place . . .

The end of this story for now:

I will pray about this.  I will consult with my husband.  I will talk to our compounding pharmacist about this (who gratefully is a God-fearing man).  I will call the manufacturer of the Quinton Isotonic Marine Plasma about the purity of its product and review their extensive website further.  Maybe I’ll be o.k. with two of the five products after all?  Then I’ll add another specific nutritional supplement before I begin the actual chelation process in about 3 months.  With ongoing experimentation of zeolite and activated charcoal plus ending all consumption of fish, I should be well on my way to a better place early next year.  Lord willing, that is!  JJ

Here we go again!
Here we go again!

 

Skype Devotional/Prayer Group Forming

Matthew 18.20 Two Gathered in PrayerHey Hope Beyond Friends who are battling illness: I’m putting together a Skype devotional/prayer group for those of us who are largely homebound. This is for persons who are followers of Jesus Christ of the Bible.  You’ll need a computer with a camera, Skype, and to be registered on Skype. I’m thinking 8 people per group (and starting additional groups if more are interested), lasting 45-60 minutes, once per week. The format could be: Get acquainted, Bible-based devotional, short prayer requests, prayer. These are “come as you are” which means just get dressed and turn on the computer!  This first group is for gals.  I’ll collect names and facilitate additional groups that you will run yourselves if we have more gals or guys who are interested.
Make a comment below with a message and your Skype name if you are interested.
Thanks and take care, Just Julie
UPDATE:  We had our first call at 8:00 p.m. EST on Thursday, September 18th.  Such a sweet time of blessing we had!  Looks like we will continue at this time and Yes there are openings for a few more folks.  Would love to meet you!  JJ