Tag: seizures

Little blue booties ring true

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The little reminders that things are going to be o.k., that the Lord is in charge, and that you have all you need are quite an encouragement to me today.  I am seeing this more clearly as my head clears after a whirlwind “Plan B” long weekend.

We never made it to Branson, Missouri for the celebration of my Other Mom’s (aka mother-in-law’s) 80th birthday celebration.  Family was scheduled to land there from 4 States for a long weekend including the 4th of July.  My Other Dad (aka father-in-law) had an acute worsening of multiple joint pain and was unable to drive the two of them cross-country from California to Missouri so we made the decision to do what was best:  cancel and reschedule the trip for the Fall.  We all scrambled to cancel various reservations made for camping, cabins, the Dixie Stampede show, watering of the garden in our absence, etc.  Then this wifey-poo decided she still needed to get away . . .

Meanwhile, my life continues to be dominated by the treatment of chronic Lyme disease, a serious fungal co-infection (protomyxzoa rheumatica), and the complicated detox/supplement regimes that go with it.  While I am grateful for a solid treatment plan, the making of our home into a hospital plus the tangible reminders at home of thousands of hellish convulsive episodes begs for a change of scenery when possible.  Sure looked like the enormous effort to get away was going to be worth a bit ‘o respite from all of those reminders.  I reacted selfishly when everything changed.  I was more crushed for my own sorry lot than my mother-in-laws cancelled family gathering, big birthday celebration.  Maybe I need less of “poor me baby,” sentiment, eh?

Steve and I thought through our options.  We had cancelled supporting a paddling race in a town about 100 miles away since we were going to be gone so we re-volunteered to help out and bring our Stellar kayak display.  But travelling a total of 200 miles plus standing out in the hot sun all day recording race times and hosting Steve’s booth seemed a bit much after 3 straight days of IV antibiotics.  So what about camping afterwards?  In the end we worked into the wee hours of the morning the night before the race to make Plan B a reality!

  • Supporting the race.
  • Finishing up all shopping plus cooking within a day for my special diet.
  • Making new reservations to camp in 2 places over a holiday weekend beginning north of the race and en-route to a new destination.
  • Continue north to Silver Lake Dunes and the campground adjacent to a Christian camp where a young couple we know has worked for about 7 years.
  • Return home after the 4th of July for Steve to return to work, allowing him to finish some important training and projects that we would have missed had we gone to Branson.
  • Resume treatment at home after a 5-day break.
  • Commence about 8 loads of laundry, post-camping melee, etc. too!

So with a tremendous effort, the ebb-n-flow of violent reactive episodes that followed being off of my treatment schedule, and some sweet memories sprinkled therein we had a decent weekend overall.  At some level I exclaim:  how crazy!  And: Is it worth it?  Well my answer this time is different than in the past:  NO!  There still are too many noxious exposures from campfires in any campground to succeed at avoidance even inside a modest travel trailer.  There is always some type of breakdown that ends up stressing us out, creating conflict even nearly 5 years down the road from dealing with this serious illness.  When we got back I was ready to sell the travel trailer the Lord had provided the resources for almost 3 years ago.  What were we thinking back then anyways?  Trying to continue with a normal life was my focus then when I did not have a clear treatment plan.  Killing the beasts within me at an extraordinary cost is my focus now.  The proceeds from the sale could pay off some of our debt.  I was ready to let it go should the Lord be leading me to do so.

In a Christian marriage, the husband is the God-ordained spiritual leader of the home.  His headship is God’s design for the protection and provision of his wife and family as he follows the leading of the Lord.  I have come to trust this, be blessed as well in submitting to Steve.  As it turns out in the scenario I have shared here, Steve suggested that we wait to make a decision about the trailer until later this year.  We have a couple more trips planned and it is clear that he wants me with him on all of them.  How sweet!  His love is amazing.  We will make some further adjustments in how we handle things next time and hope that I will be doing better as my treatment progresses; going with a partial treatment holiday could work out better for travelling than dropping everything, Lord willing!

Oh did I mention the blue footies yet?  I bought a large box of disposable medical shoe coverings in anticipation of developing a new product this past Spring.  (I could earn some money to pay for the development of my real invention by my company, Two Step Solutions, Inc.)  Attaching a Swiffer-style duster with Velcro to the bottom of a disposable slipper makes a great foot-broom for dusting wood floors.  This saves a lot of time and effort as compared to other cleaning methods, IMHO!  Then when I continued to have difficulty functioning, the idea got shelved instead of developed.  Dang!  Flash forward 2 months later and those cute booties are part of the garments I ask my home health nurse to wear to avoid chemical/dust exposures when administering my IV antibiotics three times per week.  Works great!  And in thinking through all of this today I am reminded of these truths:

John 16:33 New International Version (NIV)

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Matthew 6:25-27 New International Version (NIV)

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?

My Heavenly Father and Husband is so good to me.  He loves me so and I get to feel it everyday in the arms of my beloved Stevers.  The Lord is there in times of wretchedness, times of joy . . . none of it will be wasted as He leads me home to dwell in the heavenly mansion of many rooms, near the river of Life, with the saints who have gone before me sheltered in His majesty beyond imagination.  Thank you Lord that you sprinkle some of that goodness into my days to encourage me, to encourage my beloved.  Thank you for caring about all the details of our lives.  I submit them to You.  We will wait upon the Lord, Jesus Christ, until You walk us home to sit at Your feet in awe and wonder of all that has gone before us:  from blue booties to a lighthouse along the shore.

This rings true above all else:  You are so good to me.  Thank you Lord.

Dunes Harbor, Sleeping Bear Dunes, lighthouse, just julie writes, Julie Horney
Kayaking at Lighthouse Beach along Silver Lake Dunes

 

 

 

Spacey but upright

Published on by Jesus is for the Wounded1 Comment

There’s no pretending when the story gets bizarre.  I mean who could make this stuff up?

As the grace of the Lord has blessed, I am not bedridden thus far in the ramp up of treatment for a serious protozoal infection.  Just headaches, increased convulsive episodes at night or morning, achiness, and fits-n-starts of my ability to function.  While this is certainly awful, I was sick like this every day for the middle years of these 4.5 years of illness so I am kind of familiar with it.  This time we can call it a “herxheimer” (die-off) reaction and temporary!  I am thinking that I have benefitted from a pretty comprehensive protocol that has finally come together:

  • Ongoing IV Rocephin and fluids via home infusions 3x per week for the treatment of chronic Lyme disease, per my Lyme Literate Medical Doctor (LLMD).
  • Weekly injections of a compounded B-vitamin and prescribed nutritional suspension.
  • Weekly injections of a bio-homeopathic treatment for a newly diagnosed autoimmune disease (to start in 2 days).
  • Additional IV fluids now pending to combat dehydration and the effects of the anti-fungal protocol.
  • Supplements to improve calcium trafficking as prescribed by my naturopath and genetic coach.
  • Pharmaceutical grade supplements including an iodine protocol.
  • A switch from filtered water to non-fluoridated, purified bottled water.
  • Anti-fungal and biofilm busting treatment of protomyxzoa rheumatica (formerly known as FL 1953).
  • Continued mold/sugar/sweetener/dairy/gluten-free, low oxalate and glutamate diet.
  • Mineral baths and celtic sea salt supplementation.
  • Detoxification via far-infrared sauna, nutritional binding compounds, and periodic colon hydrotherapy.
  • A fabulous support system.
  • Rest.  Gardening when possible.  Rest.

Unfortunately the bills are piling up as Steve and I go along.  At some point we will need to decide how comprehensive of a plan is really needed long term due to the significant expense when insurance covers virtually nothing.  For now all I can say is that I continue to move in a direction of recovery and we will figure out the rest as the Lord leads.  Our prayers, your prayers are being answered.  Thank you for praying.  Praise the Lord!

 

Thank you Jesus for the hope we have in you and that I can see in my life.  And please bless my faithful husband, Steve!  Lord willing, I am going to get well!  :JJ

Psalm 20:7 (NIV)

7 Some trust in chariots and some in horses,
    but we trust in the name of the Lord our God.

The glove on the sidewalk

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In Christ there are no “coincidences,” just Divine touchstones:  those events orchestrated by the Lord for our good, for His glory.  Sometimes we get to see His hand and sometimes we don’t.  And other times things look too dark to come from our loving, sovereign, holy Father.  These can all be quite mysterious this side of heaven, eh?  Less so for me these days.  My faith has grown to trust the Lord in all things (even the ones I don’t understand).  Allow me to elaborate from my world of late.

I was walking into a medical appointment today and saw a glove lying on the sidewalk next to an adjacent garage.  I used a tissue to pick it up since it looked soiled then I noted that it looked quite familiar.  Yes, it was the glove I had “temporarily misplaced” last week!  But how could it have remained here in this sort of prominent place unnoticed for seven whole days?  Who knows?  Chances are that I dropped it off my lap onto the blacktop when I exited my vehicle and it simply blew over to the sidewalk inch by inch until it’s black silhouette was easier to see against the lighter-colored cement.  The staff person in the office helped me figure it out.  I was dumbfounded!

Similarly, I have found little God-moments in the arduous process of transitioning from IV infusions at an outpatient clinic to my home.  When you are forced into a private-pay healthcare service there is no one to assist you with navigating the 18 agencies, 6 pharmacy/supply companies, coordination of care, financial arrangements, medical orders, and “GO” button to make it all happen within a week of making the decision to do all of this.  Today was treatment day number 2!  Whew and thank you Lord!  I have been taking more naps since it all came together probably due to the stress of it all more than anything else.  There is still more to do but hey, no worries.  I’m on it!

Huber needle

The research the Lord empowered me to do has become another blessing.  First, the pharmacy I initially chose did not have the Safe Set Huber needle that would work better than what I had been sent to access my power port.  My nurse was able to quickly contact another provider on my list to have the one pictured above and some other supplies sent to my home in time for treatment #3.  No problemmo, the pharmacist essentially personally texted me from her home late Friday afternoon.  Now that’s service!

home, infusions, IV, treatment, Rocephin, ceftriaxone, home care, home health, nursing, port, power port, hospital, treatement, Lyme, disease, chronic
My new treatment space!

In another example, it looked like renting 2 infusion pumps would add a lot of expense and complexity to the home care until a “mistake” happened during one of my last treatments at the outpatient clinic.  The lab mixed the reconstituted antibiotic with the 500 cc of normal saline instead of dispensing them separately.  This would change the dosing that we had landed on to prevent seizure attacks during the hour-long infusions.  As it turns out, I tolerated the combined treatments just fine.  So there would be no need for the rental of 2 pumps, no extra expense, and not even a need for expensive, pre-filled “ball” or elastomeric pumps.  I ordered an IV pole ($20) and the meds pre-mixed into the bag of fluids instead.  Cool beans.  But all this still does not mean that I want to become a nurse ya know!

The Lord is in the details of our lives, Gentle Reader.  He knows them, He sees them, He cares about them, He grieves them, He loves over them and us too.  Just when we think that God is nowhere to be found, we need to look a little more closely at the small stuff.  We need to move the space from “God is nowhere” to “God is now here.”  He never leaves us or forsakes us (Hebrews 13:5, Deuteronomy 31:6) even in the midst of trials.  The trials may be the very place when we may see Him the best.  Take a look this week and be sure to tell me about it, k?  JJ

Psalm 139.17.18

 

 

When the healing comes

Published on by Jesus is for the Wounded2 Comments

Sure has been a wild ride of late.  Here’s a treatment update.

After almost 4 months of treatment, I have improved 28 points on the Multiple Systemic Infectious Disease Syndrome Questionnaire of Lyme Literate Medical Doctor (LLMD), Dr. Richard Horowitz!  Thank you Jesus.

Lord willing, later this week I will transition from IV infusions of antibiotics from an outpatient clinic to home health care.  Our insurance company denied treatment beyond 28 days, leaving us with a massive bill if my secondary insurance will not cover ongoing treatment.  Since it will take several weeks to find out the verdict, we cannot keep paying $900 per treatment, 3 times per week while we wait!  Hiring nurses (from a home health care agency and one in private practice) on a private pay basis plus ordering supplies and medications online will reduce the price to around $300 per visit.  Planning this transition has required considerable time, stress, attention to endless details, and work!  The orders are in process with many steps to follow in the next 2 1/2 days.  A LOT HAS HAPPENED IN THE PAST 5 DAYS to make this happen.  Thank you, Lord, that my brain has come back online just in time.  Whew!

I just found out that DNA testing from Fry Labs shows that I do have the FL 1953 protomyxzoa rheumatica (a fungal infection) that can be found in 50% of patients with chronic illness.  This parasite survives in the body in the impervious gel-like biofilms that also make Lyme bacteria difficult to eradicate.  My LLMD has recommended a combination antifungal (prescription) and biofilm-busting (nutraceutical) protocol that he says could render me very sick for a minimum of 4-5 weeks.  Most patients have tremendous recovery thereafter; gratefully I am hoping that the binding agents I have discovered will be an effective adjunct to this treatment plan and reduce the die-off or “herx” reactions.  Steve and I are prayerfully considering how to proceed as we were hoping to visit family for an important event out-of-State in a few weeks now that I am “not as bad.”  Please pray too!  I am soooooo ready to start living again!

Working with a brilliant naturopathic physician via Skype to review my epigenetic data, lab tests to date and medical/treatment history has finally led to some nutraceuticals that I can actually tolerate.  Soon I hope to add specifically formulated IV and injectable nutritionals to the home infusions (instead of driving to a clinic we were considering far from home twice per month).  And the excitability of my central nervous system is starting to come down at last:  generally fewer and shorter convulsive episodes every day for the past 2 weeks.  This has not happened in the past 4 1/2 years until now!  PRAISE THE LORD!  Experimentation with an Iodine Loading Protocol has further enhanced my results.  I have to think that I am on the road to recovery at last . . .

Steve and I are encouraged, humbled, grateful, and watchful as the events of these past few weeks have unfolded.  I have been able to get out for a walk once per week and work in the gardens around our home some.  Some of the pain and headaches that I battle every day have improved; I don’t really complain when it’s related to digging in the dirt as the sun is going down . . . I feel blessed to have had the friendship and support of a couple of friends here for rides to-and-from the hospital for treatments lately too.  And we are starting to plan some of the activities again that we used to take for granted in the past:  think Steve’s kayak races, the Tin Can Ranch (travel trailer), and the pup in tow as well.

When the healing comes by Lisa Bevill

Enjoy this lovely song that reflects the hope that is becoming clearer for me.  I hope that if you are struggling, you will lean on the Lord, Jesus Christ to see you through and keep your eyes on the goal what ever that may be for you.  He knows and loves you, cares for the desires of your heart too, Gentle Reader.  There are sprinkles of His goodness all around us no matter what the circumstances.  Let not the first time we recognize this as only when the healing comes.  Let today, this moment be a reminder that the waiting, the “pressing on” as Lisa sings, is an important part of the journey too.  Praying for you this night.  JJ

A missed opportunity to minister

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James 1:2-8 (NIV)

2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. 5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. 6 But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.

Perhaps it is a weakness in my character that requires refinement?  To witness the love of Christ to others in our times of trial serves as both a powerful witness for Christ and perfector of our own faith.  Heck, with the amount of suffering I have endured, I don’t want any of it to be wasted.  Or repeated!  So today I wonder if it is possible that I have missed one particular situation of opportunity:  the Emergency Room.  Finally my broken heart has calmed down enough to consider the possibility . . .

Ten times I have landed in the ER in the past 4 1/2 years.  The first time was at the beginning of this illness with the viral hepatitis that started it all.  The next nine trips were all for wretched, continual seizure attacks that would not stop.  Most times the ER Docs could get them and the pain that accompanied them to stop with a combination of fluids and some kind of medication.  Often the medication made me worse.  Usually I would walk out of there about 5 hours later as a beaten puppy with an exhausted husband faithfully at my side.  And sometimes I even got a break in the convulsive episodes for some of the subsequent 24 hours.  This became less true with each subsequent visit.

Twice during my severe distress, barely able to punch out a few words when having difficulty breathing and my “brain on fire,” I have sworn at the person who I thought was not helping me.  Not cool.  Even a person with Tourette’s Syndrome or senile dementia has some responsibility to try to find reasonable means to communicate his or her needs.  My frustration got the best of me and I forgot who I belong to in Christ.  I forgot Who was in charge those nights in the ER.  I forgot who allowed these refining fires into my life for my highest good.  I lost the image He gave me of His tears as He hung from the cross for me.  I ceased to remember the gifts, the crown of glory that awaits those who are in Christ Jesus.  I certainly did not remember that even these ugly things were working together for my good (Romans 8:28) even when amongst the staff at the hospital.  And my witness for the One Who saved me was tarnished for sure.  In my own strength, I failed to get my needs met and failed to minister.  We left this past Friday night with me weeping, still seizing, and unable to walk . . .

Sure, I am human:  weak, limited in strength and in power.  I pray and my husband prays continuously for all aspects of this illness.  I submit to the will of Christ.  I could also describe for you the victories, the growth, the good things that have happened amidst the traumatic.  For example, Friday night after an IV treatment for chronic Lyme disease was supposed to be for salvaging what remained of my birthday.  That did not happen when I spent the evening in the emergency room.  I was sick all day on Saturday and Sunday.  Even so there were sweet gifts at dusk on each of those days and in the morning on Monday when I got to work in my garden again; for that I am grateful.  My spirit soars out there dontcha know . . .

Here is the scripture that is convicting me on a Tuesday.  See if you can follow where my heart, where my spirit has led me:

2 Corinthians 6:4-10 (NIV)

4 Rather, as servants of God we commend ourselves in every way: in great endurance; in troubles, hardships and distresses; 5 in beatings, imprisonments and riots; in hard work, sleepless nights and hunger; 6 in purity, understanding, patience and kindness; in the Holy Spirit and in sincere love; 7 in truthful speech and in the power of God; with weapons of righteousness in the right hand and in the left; 8 through glory and dishonor, bad report and good report; genuine, yet regarded as impostors; 9 known, yet regarded as unknown; dying, and yet we live on; beaten, and yet not killed; 10 sorrowful, yet always rejoicing; poor, yet making many rich; having nothing, and yet possessing everything.

Such is the opportunity for ministry of the Gospel of Jesus Christ for those who suffer.  It’s not all about us.  My Lord, help me in your grace to use the witness of Your own life and the apostle Paul who wrote these words to strengthen my own ministry in times of need for your glory.  I have failed and want to do as You would have me do no matter what happens to me.  Please strengthen my beloved Steve as well.  Thank you for his care, love, and companionship in the best of times, the worst of times.  Bless him oh please.  He has been so good to me.

1 Peter 5:4, crown, glory, submit, His will, crown of glory, thy will be done, purpose, suffering, hope, Jesus Christ, reward, heaven