The Chips Under the Bed

They should be alright after about a week in the heat, right?  Ugh.

Usually when “the bus driver” and I come home from a camping trip, we empty the travel trailer of all food that very night.  Of course it may be 3 in the morning but it all comes out nonetheless.  Not this time.  This time was very different.  The unopened bags of chips are still in the storage compartment underneath the bed and we have been home for SIX DAYS!  Gratefully the ants on the driveway have not found them yet!

I really don’t know where to begin to tell the story of our attempt to bring a family member here from out of State to visit, to maybe live with us.  This was a huge undertaking for all three of us:  a journey that began over 6 months ago that was actually cancelled the first time around.  Perhaps it will be best to unpack the situation in a few blog posts over time as I begin to recover from what was largely a failure.  But there is good news:  my Aunt is healthier, stronger, more mentally sharp, conversant, happier, and overall functioning significantly better than when my hubby, Steve, and I picked her up in Florida 8 days ago.  As for me, not so much.

Last night was one of the most horrific scenes of recent memory.  After a total of 12 hours finally getting some errands done with a late night Doctor appointment too, I had the most frightening convulsive episode imaginable.  My threshold of reactivity had been plummeting with each passing day that my Aunt was travelling or living with us.  We had taken extreme mold avoidance procedures and she was wearing all new clothing that I had specially prepared for her.  Her belongings from Florida were cleaned and secured in plastic storage bins in our garage; only doubly-freezer-bagged supplements and medication were in the house in a remote closet.  She lived in an inadequately  maintained and moldy living environment laden with the fragrances that most women like.  We took extreme measures with her stuff but never considered the detoxing of her body to be the toxin most noxious to me; her skin scent reflected several different problems beyond hygiene and no amount of bathing or washing of linens/clothing was helping me fast enough.  I crashed fast.  She, on the other hand, (in our very clean and climate-controlled home with exceedingly healthy meals, rest, and loved ones nearby) quickly regained skills and energies she had lost in the past year.

I was unpacking groceries from our local Meier when an odd feeling hit me.  The warning signs that I learned to recognize in the past when at my sickest with this complex/biotoxin illness had changed.  The odd symptoms ramped up so quickly into involuntary full-body shaking episodes that I barely had a time to get to a safe position to prevent injury.  These kinds of episodes are very dangerous!  So I was standing in front of a counter filled with plastic bags of groceries when my eyes drew in to close and all I could do was kind of lean-and-cling to the edge of the refrigerator as the convulsions began.  They went on and on for at least 20 minutes until my husband would discover me and carry me to the bedroom.  The repetitive oscillations injured my spine from one end to the other.  I could not move my body and was terrified of falling.  Trying to relieve the cramp in my right calf triggered a rebound, a worsening of the episode.  I just held on . . .

Things were no better once lying down.  The involuntary shaking traumatized my neck and my body temperature began to drop.  I could not speak when I needed to and breathing was difficult.  Time either stood still or passed along quickly, I have no idea which one.  I couldn’t even cry out my angst until much later.  Then the visual anomalies began of swirling shadowy circles on the ceiling of our bedroom.  Steve left and returned a couple of times as he tried to help figure out just what caused this and more importantly, what to do to make it stop.  He sniffed my clothing and found them to be musty.  That discovery pointed to my hours trying to get special requests for everyone at the grocery store — a water-damaged building that was problematic for me before their remodeling.  I guess it is still a problem!  My Beloved removed my soiled clothing and the amplitude of the shakes lessened.  But by then the weird, demonic-like writhing and vocalizations had already begun.  It is terrifying to endure this hell.  I prayed for the Lord to take me.  I searched for the white lights but did not find any.  Three hours went by before I could function again . . . what was left of me, that is.

Repeated biotoxin exposures had lowered my threshold of reactivity.  I was at the lowest point, last night, after doing significantly better these past 5 months.  Looking back it all makes sense:  cumulative exposures began when helping my Aunt for five hours on each of two days to do laundry and then pack for this trip in her moldy State of Florida.  It rains there every day now and she has had water damage in her condo several times without remediation.  I wore a charcoal mask during our time there but the conditions were still unbearable.  (Even Steve agreed and had some symptoms.)  Have you ever had to wear a mask in 90 degree heat and humidity while doing physical and emotionally exhausting work?  I had a stress rash on my chest, at least 12 irritated mosquito bites, soreness from dental adjustments from my Craniomandibular Specialist in town, and to deal with a cognitively impaired and severely anxious family member who still struggles in facing her brain disease.  The process was exceedingly painful, frustrating, exhausting.

In another post I will outline the procedures that we used to attempt to implement extreme mold avoidance to be able to care for a family member in crisis.  We simply could not leave her in Florida any longer.  For today, I am grateful that I did survive last night because I got to see a miracle in action.  No, it’s not only the organic lime corn chips that are alright tonight.  I am completely exhausted yet stable and have not had any episodes since she left our home around 10:00 p.m. (and I cleaned, tossed bed linens and other things out of course).  This is the first time I have been stable in 4 nights.  The miracle is that when I was able to get out of bed at 5:00 p.m., my Aunt’s friend from Michigan had arrived and was sitting with her on our patio outside.  Well hello Dean!  He was offering to drive her back home to Florida.  While I disagree with many aspects of this arrangement, I was in no position to decline a solution that could help stabilize me:  her now former caregiver in crisis.  She left with him after some dinner, some packing, some very sad goodbyes.  Our visit wasn’t supposed to end this way!

Aunt Lori with Dean at Dinner 7.12.18

Looks like the chips and me are going to be fine in a little while (as the bags are still out there in the Camplite in the driveway).  Steve is grateful for the possibility of a full night of sleep.  We shall recover.  I am grieved that things didn’t work out with my family member and for the torture I had to endure trying to care for her.  I am glad that we could give her the gift of renewed health; that I discovered where I am at with this ongoing illness; and that our Lord is there to carry us, to act, to make His presence known no matter how hot things get in our lives.  Please join me in praying for my Aunt.  Dean won’t be staying with her very long and . . . I had to let her go from our care.


The glove on the sidewalk

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 Bed, A Barn, and A Barefoot Woman

When selecting a mattress, one must decide some key factors before heading out to the store:

  1. What size do you need:  twin, full, queen, king, or California king?
  2. How much are you willing to spend?
  3. Do you need a box spring or will the mattress still be comfortable alone if it is to be placed upon a platform bed?
  4. Do you want the comfort of memory foam?  Spring coils?  Pillow top?  Or a combination of the these three?
  5. Will having a 2-sided mattress be important to you and the life of your mattress or do you desire maximum comfort in one-sided layers without the option of flipping it periodically?
  6. How thick of a mattress will work in your sleeping area?  Too high of a bed can cause accidents and require a step stool for the vertically challenged among us.
  7. How long is the warranty?
  8. Will you get a better deal all around if you buy locally from a barefoot woman?womans feet

Whaat?  Did I lose you with number 8?  I don’t really see why because after all, that was a HUGE factor in my purchase of a mattress on Friday!  Well, I didn’t think it would be a big factor until a most unusual circumstance arose.  Allow me to elaborate . . .

I asked some friends on Facebook for a suggestion of a place to purchase a relatively inexpensive queen-sized mattress.  Some additional factors due to my allergy sensitivities were:  minimal outgassing odors from synthetic materials, latex-free construction, plus the overall weight must be reasonable.  I had found a manufacturer in a city about 1 1/2 hours away who offered custom mattresses and was prepared to make a road trip to check it out while carting our old queen mattress in the bed of my truck.  Then when an acquaintance suggested a local business owner “at the corner of Hurshtown Rd. and Boger Rd.” who had provided her family with a great product and price point not too long ago, I decided to check it out.

The problem with this scenario unfolded quickly:  the streets intersected somewhere in the middle of no where by two smallish towns and in the heart of Amish country.  The phone number that she gave me didn’t work and she was unavailable on Facebook Messenger to clarify it.  Of course I didn’t have her cell number with me!  If the place was an Amish business then it could be possible that they would not be in the phone book or have a website.  Both proved to be true.  Yet the possibility was still intriguing  to me.  We have had local Amish craftsman build a cabinet for our bathroom, weld a custom seamless curtain rod for inside our bay window in our kitchen, and create two gorgeous custom trellises for our flagstone patio.  The experiences were fun for me to design and the finished products were excellent at fair pricing.  So to embark on an unknown adventure to find the right Amish-quality mattress was very appealing to me.  I decided to go for it!

My GPS located the intersection of the two streets in a remote area as I had suspected:  right in the heart of Amish country along blacktop roads littered with smooshed and sun-dried horse manure.  No signs were in sight to point the way to Ruben’s Mattress Warehouse!  Ahead of me was a horse-drawn buggy carrying two ladies about to exit a homestead onto Boger Road.  I stopped and asked what I thought was a friendly question.  “Hi there!”  I said as the driver looked shocked, all bundled up in black in the front seat of a two-seater, that this gal originally from Chicago would stop to speak to her from her warm and comfortable king cab truck.  “Is there a mattress business around here?”

“I think there’s a guy who sells them across the street,” was her sheepish reply.  Really?  Don’t all Amish folks in this area know each other?  Aren’t they almost all related either directly or indirectly, through inbreeding or something like that?  There must be a family squabble going on so I confirmed where she was pointing to and motioned that she could exit out of her parking lot of a driveway in front of me.  She bowed her head slightly and proceeded out and down the road.  O.k.  Now for the second part of the adventure:  which barn is it? 

I pulled into the homestead across the street, facing Hurshtown Rd.  Having visited many Amish families when providing occupational therapy home care visits, I was a little familiar their culture.  They are a private people so you don’t just go up and knock on the front door of the house or wander around the barns looking for someone official-looking.  I decided to wait in my truck while trying to contact my friend again via my smartphone and hope someone noticed the sound of a truck driving up.  Shortly thereafter, the barefoot woman appeared.

I confirmed that this indeed was the mattress place, that no, I didn’t phone ahead because I had the wrong phone number, and yes, it was o.k. to drive around the first barn to the entrance and come inside to check out their inventory.  Ruben makes the mattress frames for the Wolfe bedding company in Indianapolis, a 2-hour drive south of Fort Wayne near where we live, and sells the completed mattresses locally.  Their customers are generally from the Amish community and a few folks in the area who find them in a regional courier or by word of mouth.  Well cool beans.  The barefoot woman was kind and showed me her wares in her navy pleated dress:  carefully pinned together with straight pins per the dress code of their bishop and accompanied by a pleated white head covering.  Her adorable granddaughters followed us around the barn as I laid on a few samples that fit my criteria.  One was perfect and I wrote her a check for nearly half of what a department store would charge.  Cool beans again!

The women of this community have always struck me as being particularly hardy.  This was proven true once again when the barefoot grandmother and her tiny daughter loaded the 80+ pound queen-sized beast into the bed of my truck with yours truly helping some too.  The gravel parking lot, 60 degree weather, and risk of a mattress crushing her feet if it slipped made no difference in the order of business completed that afternoon.  I tried to be an encouragement to the girls who had shared that their mom was sick, before I knew that she would be summoned to help with the loading, and suggested that they could pray for her mother to be healed.  Earlier I was amazed that there was no synthetic smell whatsoever to the mattress and offered a spontaneous exaltation of praise to the Lord who surely led me to this expertly crafted barn of sleep-heavenly treasures!  “Praise the Lord” I exclaimed.  Truly my Jesus was providing for my every need that afternoon and I remain exceedingly grateful.

The barefoot woman and the girls retreated back into the house surely to attend to other household duties.  I proceeded home with the mattress hanging out the back end of my truck, musing about the wackiness of yet another adventure here in my beloved home state of Indiana . . .

Most folks who live in the outskirts of Fort Wayne would think nothing of the kind of experience that I have described for you here.  But for me it is still a wondrous process of discovery when a simple purchase becomes an adventure into the back roads of the surrounding countryside, a window into the daily lives of another culture, receipt of a quality product made by local craftsmen, and another confirmation that I might have always been meant to drive a white pick up truck!  It’s fun to haul stuff yourself!

I am so glad that my Knight in Shining Aluminum (aka Steve), my intended beloved brought me here to his home State of Indiana from the bulging metropolis of Chicagoland seven years ago.  I am so grateful that my dad bequeathed my brother and I his Nissan Frontier king cab truck so that I might trade in my Hyundai Tucson for one of my own.  And I am so glad for the ability to slow down and smell the scented barely-marked road ways along the way:  something once foreign to me sitting in big city and suburban traffic not long ago.

So the next time you are seeking to purchase a new bed or mattress set, think about the barefoot woman in the barn.  You too might find a steal of a deal in addition to a great night of sleep!  You might also find fodder for the grist mill for having travelled off the beaten path.  I did and I am glad.  :JJ

Amish buggy

Between a rock and a hard place

headache back pain comicSometimes you have to make a choice.  You are at a dead end or maybe lost.  Perhaps what worked in the past will no longer suffice.  Or perhaps you are facing the most difficult reason:  an external force requires you to act immediately.  Regardless, the process goes more gently when covered in prayer to the One who sees you and your situation, cares for you, knows your heart and heartache, and has a plan an purpose for your life.  That plan and purpose includes the crossroads in which you find yourself.  Stepping forward into the arms of the loving and perfect Father through a relationship with His son, Jesus Christ, will carry you through the decision every time.  He already knows, sees . . .

Gratefully I don’t have to stress very long these days before I’m at the throne of grace with my alms of concern.  I understand that it blesses the Lord to come before Him with all things big and small; such a mystery of His amazing grace.  This week had them both for me.

Big decision:  sell the Beam Ray/Rife machine in which Steve and I invested so much hope and resources just 1-1/2 years ago.  It’s not working for me and I cannot tolerate most of the frequencies anymore.  Time to let it go and move on.

Small decision:  relinquish my cheaper cell phone with a slider keyboard for a smartphone.  We will benefit from having it on the road when travelling and it will expand my online business possibilities.  Time to let go and move forward.

Big decision:  place active Lyme and mold treatments on hold to eradicate a serious systemic yeast infection.  This requires risking more noxious events to kill the fungus that is hurting me and may even be contributing to the seizure attacks, etc.  I seek wisdom in the timing of all of this with the upcoming Thanksgiving and Christmas holidays.  Alas, it is time to let go of the time table and move ahead carefully.

Small decision:  discontinue the IV magnesium treatments at number 28 because the symptomatic “cost-benefit analysis” don’t compute anymore.  Sometimes you simply have to choose.

Medium decision:  sold my (beginning) surf ski kayak called a Stellar SR.  This one brought tears.  This illness has challenged my fitness and balance skills making the mastery of paddling this specialty kayak quite difficult.  Steve just sold a kayak as well so we likely will invest in a solo outrigger canoe and share it.  These are awesomely cool, fast paddling boats that just might work with either kayak or canoe paddles.  Yeah but I let go of the SR before ever mastering it.  I got sick after paddling it October 11, 2011:  my third time on the water with it.  Seeing it go on a rainy afternoon was a gray reminder of the past 2 years of illness and brought up feelings of failure.  Sish, maybe this was a bigger decision than I thought.  The tears are making it hard to see the computer screen right now . . .

I think tomorrow will be a retreat day.  Steve and I will be celebrating our wedding anniversary and perhaps something simple will be nice this time.  One of the best decisions of my life was to move out of State to marry Steve 6 years ago.  Ahhh my intended beloved.  How the Lord has blessed me with a man after His own heart as you!  However we choose to spend our time together, I am sure that it will be wonderful.

O.k. so I just went from tears to blushing.  Allow me to send you off with a prayer:

Heavenly Father, thank you for seeing and hearing the hearts of Your children each day.  Help us to reach for the shadow of Your wings to carry us when we cannot stand, to shelter us when we must wait on your Divine hand in our lives, to lift us when it is time to step out in faith once again.  If it is Your will I ask for healing for me from this complicated mix of illness and for the Gentle Reader finding you this day whilst reading this blog.  Cover us with Your healing grace and merciful love.  Guide us in our decisions for your glory Lord.  And help us to keep our eyes fixed on You, waiting with great expectation for Your Providence to unfold.  I love you Lord.  In Jesus’ name, amen.