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?!    :]

 

Anatomy of a Garden Bed: Luke 7

While a large crowd was gathering and people were coming to Jesus from town after town, he told this parable: “A farmer went out to sow his seed. As he was scattering the seed, some fell along the path; it was trampled on, and the birds ate it up.

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Nothing going on here at the nursery: barren ground and a dead stump provide a perch for this lone feline.

Some fell on rocky ground, and when it came up, the plants withered because they had no moisture. Other seed fell among thorns, which grew up with it and choked the plants.

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In the absence of compost and amendments, nothing would grow in this soil!

Still other seed fell on good soil. It came up and yielded a crop, a hundred times more than was sown.”

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Compost, Canadian peat moss, hardwood mulch and fertilizer should give these newbies and transplants a head start in their new home.

When he said this, he called out, “Whoever has ears to hear, let them hear.”

When we do not heed the Word of God all our efforts waste away, crumbling back to the earth like the dead plants in this compost pile.  How better to thrive in the Word of wisdom!
This passage provides important lessons for our lives.  When we do not heed the Word of God all our efforts ultimately waste away, crumbling back to the earth like the dead plants in this compost pile.

His disciples asked him what this parable meant. 10 He said, “The knowledge of the secrets of the kingdom of God has been given to you, but to others I speak in parables, so that, though seeing, they may not see; though hearing, they may not understand.

Without the counsel of the words of Jesus Christ our lives are like chasing the wind.
Striving in our own strength, is like blindly chasing after the wind.

11 “This is the meaning of the parable: The seed is the word of God. 12 Those along the path are the ones who hear, and then the devil comes and takes away the word from their hearts, so that they may not believe and be saved.

Barren ground shall not awaken without the light of our Lord and Savior.
Barren ground shall not awaken to the truth without the light, the Words of our Lord and Savior.

13 Those on the rocky ground are the ones who receive the word with joy when they hear it, but they have no root. They believe for a while, but in the time of testing they fall away. 14 The seed that fell among thorns stands for those who hear, but as they go on their way they are choked by life’s worries, riches and pleasures, and they do not mature.

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Plants weaken and become subject to pests and diseases when choked together.  Perennials that mature properly require care, division, replanting, water, sunlight, fertilization, and time to grow in due season.

15 But the seed on good soil stands for those with a noble and good heart, who hear the word, retain it, and by persevering produce a crop.

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The newly pruned and divided stella d’oro daylilies will flourish next year, finishing this season well and providing plants for the new garden bed too.

 

Resting in God's creation
How glorious it is to rest in God’s creation and plan for our lives!
Finished well.  Thank you Lord!
Finished well. Thank you Lord!

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P.S.  I’m thinking of putting together a group Skype devotional and prayer time once per week with others who are largely isolated for whatever reason.  The focus would be open and based upon belief in God through the person of Jesus Christ of the Bible.  Please leave me a comment below if you might be interested.  I’ll do a separate blog on this soon!  Take care, JJ

Where do you think I was taking you?

trust-in-the-lord-proverbs-3-5-6A dear sister in Christ shared with me a story today of another time in which she was struggling in her walk with the Lord.  A year later she ran into an old friend who was in a time of severe struggle.  As she listened closely to her friend she was reminded of how the Lord gave her victory the previous year and how he gave her an image that made a lasting impression. 

Picture this:  you are walking behind, faithfully following the Lord Jesus Christ who is walking in front of you.  Your hands are placed firmly on the back of His shoulders as He leads you forth.  You are not trying to get ahead of Him or push Him faster down the road.  But you are straining to look over His shoulders, attempting to peer around His sides, jumping to see over His head.  Where is He taking me?  Why don’t my circumstances show me what lies ahead for me?  Why can’t I see where we are going, the point to all of this agony? 

 

Now that doesn’t look much like following in faith now does it?  Yeah.  I have been there too.  Trying to get ahead of the One Who loves me and has carefully crafted my life as His own child, under the protection of His loving arms.  Instead I am going to remember the image that my friend said came next:  she gently looked down, perhaps drawing a little closer to His mighty frame, and simply walked behind Him in His footsteps.  She let the Lord lead her through the trials and in due time they ended.  And a year later her tenderness for her friend encouraged both of them.  I am sure of it.

My friend shared that in her heart long ago she heard the words, “where do you think I was taking you?”  Where indeed.  May our answer always be, “anywhere you lead my Jesus.”  Anywhere.  JJ

 

I get it Jonah!

Jonah was an Old Testament prophet called by God to warn the people of Nineveh to repent.  God’s judgment was eminent unless they changed their evil ways.  Jonah burned with anger because he did not like the people of Nineveh and thought they should not be the concern of the almighty God.  So instead of going to Nineveh, he headed off on a ship to Tarshish instead.  A mighty storm rose up, threatening the ship and crew.  In time they found out that it was because of Jonah that their lives were at stake.  At Jonah’s suggestion, they tossed him into the sea and the storm ended.  Jonah was taken up by a mighty fish and spent about 3 days inside before repentance  of his own disobedience towards God.  Eventually Jonah went to Nineveh, he warned the people, they repented, and their lives were spared.  Jonah still wasn’t happy . . .

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I was making some new necklace designs the other day, very late at night.  Things were not coming together well as I had to re-do a simple slider knot at least five times before I got it right.  Then I made the same mistake again on another piece!  Do you have a “little tiny voice” that sometimes nudges you in the direction you should go?  Yeah, it was yapping at me to save a particular scrap of hemp cord in case I would need it for another part of the new collection.  Fooey, I thought.  I have other colors and I really wanted to make some gift ties with the white cord not save it for something else that was not in front of me.  So I didn’t save the cord.  It was the last piece of that color and it got used as part of a gift box packaging that was sent out the next day.  I did not think about it anymore.  Or rather I did not think about it any more until I had to repair a mistake in one of the new necklaces six days later.

I lost an hour of my life trying to correct my mistake with anything but the white cord remaining in another gift tie.  I could not believe how many goofy mistakes I was making trying to avoid getting out the bag of gift ties, untying a braided strand, and using a proper length of cord to make the repair.  Finally I laid down my will.  It wasn’t working.  Repairing the wrap knot and saving the jewelry piece required me to dig out the supply that had been within arm’s reach all along.  Sigh.  Alright then.  Hunker down and take care of it already!  Moments later I was done.  But what had happened to me?  It’s just a piece of jewelry for crying out loud!  Yes, and I might as well have been a stubborn 2 year old for how I was acting.  I’ll never get that hour of my life back again.  The only person to blame is me, not some illness brain fog thang.

Has this ever happened to you, Gentle Reader?  Hopefully the stakes were not as high as a nation threatening to be destroyed because of the selfishness of a wayward prophet.  There probably were consequences of some kind though:  consequences that were unpleasant or harmful, wasteful.  Sure, we need to be gentle with ourselves when we make mistakes, live for a time in denial, procrastinate, and the like.  And yet when we are outright defiant to that which we know we should do we are hurting ourselves and maybe others too.  It’s a sign of immaturity, a lack of self discipline.  While we sometimes may need to delay making the right choice in a situation for a variety of reasons, let’s hope we get to task when there is a leading is from the Holy Spirit:  my tiny voice inside of me.  He has my best interests at heart even for the small events of life.  He cares for all of the details of my life just as He cares for the nations of the world.  That’s just how mighty our God is:  the great I AM.

Dear Heavenly Father, I am weak this night.  I am still capable of heeding the counsel of the Holy Spirit that ministers to my every need.  Thank you for the incredible gift of your indwelling Spirit.  I lay down my will this night in awe of Your love for me and majesty.  Strengthen me for both the mundane and more important tasks in the days ahead.  Grow my trust in you.  And if it is Your will, heal me of my infirmity so that I may be used for greater things.  Thank you for Your Word to teach us, guide us each day.  I love you Lord.  In Jesus’ name, Amen.

Adjustable Friendship  Necklaces from Threads of Hope and Trinity Jewelry by Design
Adjustable Friendship Necklaces from Threads of Hope and Trinity Jewelry by Design

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