Tag: endurance

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

 

 

 

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

 

 

A matter of perspective

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Monday’s perspective:

The level of sunlight raises up then down in the hallway beyond my bed
Like a child playing with a dimmer switch, how I know where these thoughts have led!
How can I get up and face the world one more, yes one more day?
When so much suffering met me here or there, no matter where the level of light has shone along the way?
Still one cannot judge the next moment based upon the past…
You just cannot predict when joy, when peace, when hope will come at last?
Simmer down inner child and let the sovereignty of your Lord speak.
You must remember how He delivered you in the past when you were so weak.


Your fears, your toils were measured by My drops of blood while I hung on that cross
I saw, I see, I weep, and I am always right there when you feel lost.
Hitch your heart to Mine choosing faith that freedom will come in due time
Watch for My answers, My leadings, My deliverance some now, some beyond a simple rhyme.


There is hope. There is more. There is a heaven, I promise as I know you have seen.
Walk towards My light dear one: what’s coming is greater than what has been . . .

Friday’s perspective:

In time the beatings diminish

And you catch your breath to finish

The week that held too much, oh dear

Gave way to Friday and better news to hear.

Things moved forward:  medical tests and even some healing

Living more in the facts by golly with less in the “fearful feelings.”

I might even go out soon:  making plans for the days ahead Lord willing

Better get the pup.  It’s time for a ride to pick up the bacon, the drugs, the groceries:  excuses good enough to put off another day the cleaning!

May the Lord bless your weekend, Gentle Reader.  JJ

The Missing Needle Nose Pliers

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 flat nose pliers, jewelry making, o ring, jump ring, making jewelry

Husband asks:   Where are my needle nose pliers?

Wife answers after a long pause:  I might have sent them to Minnesota . . .

And then another looooooong pause follows with:  silence!

Sometimes the logic of the moment doesn’t make sense to anyone else but oneself.  Know what I mean?  Hey, I was selling my jewelry business this past Fall and wanted to send along all of the tools that the new owner would need.  I noted that there was a nicer pair of pliers in the tool cabinet so surely hubby-dear would agree that I should make my customer happy to have both pairs needed to successfully open and close jump rings?  Besides, I did ask him about it didn’t I?  He did not remember me asking him.  I did not remember it exactly either.  Well DeeAnn in Minnesota is happily making jewelry and that’s all that counts, right?

Well maybe not.  Within a day I made sure that we picked up for my beloved, a nicer Stanley-branded pair with ergonomic, non-slip grips at Walmart.  Win!  Win?

We employed a similar rationale four years ago when I never really recovered from acute hepatitis.  For more on that story, see the About Julie page here.  It seemed the right thing to do to use an alternative technology to treat Lyme disease when a trial of antibiotics left me wretchedly ill.  Sadly, the Beam Ray Rife machine hurt me, sending me into a tailspin.  There would be no easy solution(s) to this complication.  I developed seizure attack episodes within 3 weeks of running very short programs on the unit which exposed me to various frequencies of light and sound waves.  A dozen or more local folks using their own machines noted benefits.  I did not.  I sold it about 1 1/2 years later with a net loss of $1500 and what has become 4 years of daily convulsive episodes.  This weekend there have been 3 major and several minor wretched episodes within the last 24 hours.  Lord have mercy!

Beam Ray, Rife, sound, light, wavelength, alternative medicine, Ray Rife, Lyme disease
Beam Ray Rife machine

 

As you can read in the link noted above, we have tried many different kinds of valid treatments coached by skilled practitioners.  I have benefitted from taking down mold exposures and illness, mercury toxicity, Candida, parasites, and the extraction of 2 root-canaled teeth.  Even so I feel like a beaten puppy!  But now we know that they very likely are related to Chronic Lyme Disease requiring the use of powerful doses of IV antibiotics for many months.  Seven weeks into the treatment I can tell you that there are some positive changes.  Unfortunately I am having complications from the weekly IV infusions so later this week I will have a port surgically placed in my chest wall.  This becomes a direct-access site without the need for sterile dressings that irritate my skin or superficial phlebitis that has plagued my forearms for about 3 weeks.  (Thank the Lord that I discovered horse chestnut gel when the warm compresses did not help.)  I am also hoping there won’t be any more violent episodes with the treatments. Even intramuscular injections have been exceedingly difficult.  Whew!

So there ya go.  A funny story, an update, and a little hope beyond the saga of late.  Lord willing, I am going to get well!  And when I do I might just get out my own tools here in Indiana, not Minnesota, for digging in the garden.  By the way, Spring weather is forecasted for this week .  Since I won’t be tethered to an IV line I can safely get a little dirt underneath my fingernails if I am up to it before the surgical procedure on Thursday.  The garden pup is ready.  You could say that I’ve traded the needle nosed pliers for an aluminum shovel!  So let’s get to it . . .

I wonder how those carrots are doing that got left in the ground last fall?  Having a little extra time in the soil should make them as sweet as candy by now dontcha know?  :JJ

life began in a garden

So much to consider

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Phil 1:12, Philippians, trials, suffering, endurance, Christian, crisis, long term, illness, chronic, humor, gallows12 But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.”  Phil 1:12

Just as this picture and this scripture present two extremes of perspective for the activities of life, they are united in one theme:  we shall rejoice with Christ as our guide!  Yeah, I know that is a stretch . . . but we do know that the God of the universe has a sense of humor too, right?  I mean he created aardvarks, zebras, and tse tse flies!  What’s up with that?  Oh I know that the Original Adam named them all but just how did he do that?  They were all such weird creatures!  So it follows then that humor can help us endure many kinds of extremes, even the ones you and I are facing today.

Take for another example the thieves that attempted to steal gasoline from an RV.  This is a true story:  instead of tapping off the gas line they ended up tapping off the septic line instead!  When the fluid started flowing it was not fuel it was the polar opposite:  stool!  So sad.  Such a righteous punishment I must admit!  And as a grateful owner of a travel trailer all I can say is:  Tee hee with a smirk.  ;}

I cannot say that I can relate to the paradoxical themes of life with much right now with much lightness of spirit right now, however.  I’ll just keep it simple:  there’s some good and there’s some that is not.

On a good note I am grateful to report a widening of social contacts of late.  I’ve reached out to some old friends and some newer gals have jumped back into my world from my local church.  I appreciate the friends that I’ve met online (and you know who you angels of mercy are) and hope we can extend our fellowship.  All of this is good.  It’s amazing how all believers in Jesus Christ share a common unity even when the circumstances of our lives can be so different.  We all have our daily wants and needs; our Lord cares for the desires of our hearts tenderly and for these we can pray in earnest for one another.

On a less good note, new I.V. antibiotic treatments for chronic Lyme disease are going quite roughly.  Yup, revisiting Lyme since the persistent seizure attacks sure look like the episodes of others dealing with the neurological complications that can happen long after the acute infection has come and gone.  It was 4 years ago that I first started treatment for Lyme when things got sidetracked for treatment of mold and mercury toxicity, dental issues, Candida, parasites, and a possible oxalate burden exacerbating fibromyalgia pain.  Use of a Rife machine brought daily seizure attack episodes and treatment of Candida escalated them from 2 to 5 hours of convulsive episodes per day!  I was bedridden the better part of about 4 days each week this past Spring, Summer, and Fall.  So beginning in January I was started on high doses of IV Rocephin (antibiotic) and I remain sickly but out of bed more of the time.  This treatment coupled with the wintry temperatures below freezing have brought incredible pain.  However, the days that I am up until daybreak every night of the week has cut down; tinnitus, brain fog, and other executive functioning skills are sloooooowly shifting for the good.  Sometimes even the pattern of convulsive episodes shift as well (thank you liposomal melatonin!).  Just maybe these past 4 years have not been wasted after all!  It appears that each new treatment has prepared me for such a time as this:  we just might be able to treat this remaining beastly diagnosis and its co-infections to get well . . .

There is so much to consider.  Will I continue on antibiotics long term?  Will my health insurances help us out or cut us off next week?  Will I be able to get a port to spare my aching skin and forearms from repeated pokes and dressings that trigger more wretched episodes?  When would I transition back to more herbal-with-pharm-grade supplemental interventions?  Will the reactivity to mold and fragrances ever come down or do I have to go live in a pristine environment somewhere for a few months later on to fully detox?  How much more stress can my beloved husband, Steve, be expected to bear?  And how will we pay for all of this?

As the frigid Winter temperatures of the Midwest bring more of a sense of retreat than charging forth into the unknown, we are choosing to press on anyways with my treatment for chronic Lyme disease.  I just wear long underwear everyday to keep warm!  We are starting where we are with a local, Lyme-Literate Medical Doctor who has treated dozens and dozens of cases successfully.  I know that to be true.  I have met many of them when we had a local Lyme disease support group.  I noticed that each of us facing this dreadful disease had chosen a somewhat unique path to his or her recovery based upon the damage the infection caused to our bodies and our individual resources.  (See this link for more info on chronic Lyme.)  Perhaps my case was one of the more severe.  Perhaps the Lord had more than “recovery” in mind when He allowed this serious illness into my life.  There is so much to consider that simply was not on my radar over 4 years ago.

If you have found this blog by way of your own journey through chronic Lyme disease or some other serious illness, know that I am praying for you.  There is hope!  You are not alone, Gentle Reader.  Please comment below and allow me, if you like, to connect you with a larger community of those finding meaning beyond his or her diagnosis.  Our Lord, Jesus Christ, grieves for your suffering, your fear, your broken heartedness.  He sees you and will see you through what you are facing as He has done so for me and Steve.  He loves you more than anyone (including the furry pup above who has found his prize squirrel in the sunshine of a better day).

May we both smile some day in the arms of our Heavenly Father for having connected this day, for His glory.  And, um, when we get our prized prey I’ll just say, “please pass the catsup.”  Squirrel on the Bar-B-Que anyone?  Ewwwwww!  :JJ