Little blue booties ring true

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 Dad that never left

Perhaps it is more of a blessing than anything else that I have more time for reflection these days.  After the double-loads of laundry, medical management, treatment-and-recovery, self care, and various household duties are completed, there are generally more hours than in my past to think about the stuff of life.  On Father’s Day yesterday, I started to notice some new parallels between my past and present.  It went something like this.

I was posting a picture of my Dad and me on Facebook when I realized how his generosity when he stepped back into my life has become an important part of my current recovery from serious illness.  His gift about 6 years ago allowed me to create a garden oasis in our backyard.  Here are two of my favorite areas:

Creating the flagstone patio area required graph paper, a ruler, tape measure, and endless gazing from all angles to make the kidney-bean shaped layout meet the vision the Lord had given me.  In the next 2 years the process continued with a pair of 8-foot custom steel trellises then a “secret garden” area (basically a re-purposed dog pen!).  The planting beds came later as I decided that we needed more privacy from our neighbors behind us and that I wanted to have a garden-view beyond each room of the house.  The bed on the right in the 2nd picture is largely of native plants and a key component in earning a Sustainable Garden designation from our local cooperative extension office.  The aqua custom shade sail was an incredible find from the “sale” page of a company by the same name.  Now that the design is complete the plants have matured and my heart is home.

Dontcha know that my mom was a gardener?  She would hunt down the groundskeeper at the local zoo if needed to obtain a plant start of a specimen she just needed to have in her yard.  Composting, vegetables, a mounded hill, hanging baskets around the hot tub spa . . . she had all the elements that made her heart happy out there in her suburban back

Mom in Spa

yard.  Her creation came together because of the generosity of her parents too.  Some may call it an inheritance.  I call it the chance to create something beautiful from the sorrow of a lost family member.  And I think it’s o.k. to spend some of it to make the process of going on without him or her a little nicer.  Do something that makes your heart happy!

Flash forward 4 years from when the “bones” of our own garden were installed and I am exceedingly grateful for what the Lord has allowed me to design, to create.  Lying sickly on that chaise lounge last summer when it looked like there would be little hope for recovery, brought solace of sorts.  Lying sickly on that same chair this summer after taking treatments that are slowly giving me my life back is bringing hope and the flow of some new creative juices.  My husband, Steve, just smiles a bit when I talk like this.  He knows that could mean a little more trimming around a new garden bed or hauling of something heavy to make it happen.  Oh how he loves me so!  Well I’ll let ya all know how it turns out for sure!

Steve brought me to see this home on our fourth date.  He wanted to know, “if things worked out between us could you see yourself living here?”  Talk about pressure!  I was visiting him in Indiana for the first time from the Chicago suburbs and certainly was not about to make a decision on the spot.  At least out loud, that is!  But I knew that the bush in the front-and-center of the bay window was a Miss Kim Lilac and just like the one I had lost with the townhome when my former spouse left me.  I also knew that the bush next to it was a burning bush that gets a magnificent, fiery shade of red in the Fall and just like the one I . . . well you can see where this is going.  It’s like when I viewed Steve’s profile on Yahoo Personals and saw a picture of him with a radio-controlled airplane that reminded me of the flying competitions in which my dad and brothers flew line-control planes when we were kids.  Of course I knew that the house was a great idea; I just wasn’t going to tell Steve anything just yet.  The home he purchased before we were married became a blank slate for me in remaking so many years that the locusts had eaten . . . . (Joel 2:25)

So I hope you can see how a simple thingy like some flower and vegetable gardens can be so meaningful to someone like me.  The draftsman in my Dad has become the designer in me.  His surprise generosity allowed me to create a living oasis that was an interest I shared with my mom when I became an adult.  Finding a loving place to realize these gifts would come in a way like never before when I found my intended beloved in the arms of my Stevers.  Solace, restoration, and hope were all set in motion regardless of my life’s circumstances according the plans of my Heavenly Dad, my Heavenly Husband; He knew all along the seeds He had planted in my heart long before I could ever dig in the dirt of life myself.  And just as life on this green earth began in the Garden of Eden, so do our own lives thrive in the planted spaces in which we are tilled and turned, watered, pruned, and nurtured until beauty bursts forth in scented color, in hope beyond that which we can see.

How can I be sad about the losses in my life when my Heavenly Dad has always been there with me?  From my garden bench I bid you a “Happy Father’s Day,” Gentle Reader.  I pray that you, too, will live in the fullness of life that grows more grand with each passing day:  a garden oasis in your soul where the One Who knows us so well can make everything meaningful, anything beautiful in the noon day sun or under the shade tree too.  JJ

Dad & me at his trailer

 

 

Spacey but upright

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)

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

Anticipation

One could say that the days before a cross-country trip are usually filled with a multitude of tasks and anticipation of the good times to come.  I’ll give a “yes” to both accounts and now we are back from coastal Alabama with pictures to share.

20160523_181947
Paddling the Stellar S16S felt good in Perdido Bay off Alabama/Florida waters
20160526_104127
Steve and I congratulated Elizabeth and her husband Daniel as she earned her wings to become an Army Blackhawk helicopter pilot

 

 

20160522_131937
Our happy travelling companion Elle
helicopter, flight, pilot, family day, Army, ride, flight, school
Elizabeth piloted a helicopter ride for each of us after graduation. Awesome!

I did a lot better travelling this past week than our last trip in November of 2015, that is for sure.  I was able to attend all but one planned activity by pacing myself, meticulous planning, and some improvement in my overall health.  The convulsive episodes that still accompany the serious illness I am battling kept themselves largely to the overnight hours and travelling in my truck.  And they were much less!  Yeah God!  It’s amazing how much life can fit in between the setbacks these days . . .

Now that 11 loads of laundry are done, the travel trailer and vehicles are cleaned, and even some garden chores completed I am ready.  A nasty new treatment begins later this week.  Resuming the infusions of IV antibiotics, a few scheduled appointments, grocery shopping, and making sure our support systems are in place come first before the darkness falls.  It really could be that bad.  Or maybe not?

They say that breaking up stealth biofilm and killing protomyxzoa rheumatica (formerly known as FL1953) can render a person useless.  Or bedridden.  Or really, really sick.  Then after around 4 weeks, there can be miraculous improvement.  My trial run 2 weeks ago of 1 capsule of the anti-fungal brought dizziness, light-headedness, and cognitive slowing.  My Lyme Literate Medical Doctor was thrilled when I told him.  (He is kind of kooky that way!)  “It’s affecting your brain!  That is good!” he exclaimed in a way that only a master diagnostician can.  Oh boy.  “I wonder what the full dosing will be like?” was all I could think about.  And how will I eat?  Get to the bathroom?  Keep up with all of the treatments while home alone when Steve is at work?  So many questions remain unanswered at this point.

This is what I know for sure.  In a way, the break in treatment for a week of vacation came too soon.  I was not ready to go without the IV antibiotics and daily routine that has facilitated this turnaround without some extra struggle.  There was a lot of stress amidst the good times.  In another way, the break fed my soul!  I got to see what living was like for everyone else while being with everyone else.  I got to kayak with my beloved River Bear . . . . TWICE!  I did more than one thing each day and did alright trying to do so.  When we got back home I got to work in our garden two days in a row.  Wow, Lord.  Then I read an adventure novel in 2 days!  How lovely it was to immerse myself in a bit of life again.

So for the unknown treatment coming in a few days I will say this:  bring it.  I have faced worse than lumbrokinase and prescription Lamisil.  I will go slow if I can and employ every herxheimer (aka die off) remedy I have in my arsenal if needed.  The Lord has brought me through near-death experiences, daily hell on earth, despair beyond belief.  I have been given a taste of life again to encourage me and those around me as well.  It is time to dig a little deeper, literally.  We have found The Beast in the recesses of my brain tissue.  This is war.  Lord willing, I am going to get well.

If we don’t chat for awhile, please pray for me and Steve, k?  Thanks a bunch Gentle Reader.  I am grateful for you.  With love, JJ

Julie BH Crop

A matter of perspective

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