God gave me you

Nor ordinary Christmas we had this day

Sleeping in then slowly moving into life out of necessity more than design.

Broccoli for my breakfast and handfuls of granola for my man

Brought us to our traditional reading of Isaiah before revealing our worldly gifts for I and you.

Who paddles a new long board down the hallway

But two middle-aged lovers holding onto our respective gusto of life?

A rest time had to follow for me again

Not as unusual as the waking episodes that have returned changing my hopes for the day.

Perhaps we would visit or do something fun

Yet return to my bed of sickness I did go for a most unfortunate interlude.

When your husband holds you from joy to sorrow

The same day seems surreal: later he feeds you medicine whilst you seize.

Siiiiiigh. Not that old tune returneth even today

For chronic illness ne’er takes a holiday when you want it to my dear.

This did not matter to you: your love never fades

And my greatest gift revealed its beauty the ten thousandth time: it’s you!

I could never conceive of this way that you have

To give beyond your self with a gentle spirit, still manly all the same.

You spoke only of my rest to your family on the phone

Preserving my dignity when I could barely feed myself with fingers weary from the beating moments before.

Yours is a love from the Father, the Son all in One

The kind that sustains you through trials when Jesus comes near with skin on.

He made you for me oh I am the blessed one

I pray he loves you back tenfold for the task of loving me well done today my love.

It wasn’t meant to be

happy place, home, where the heart is, house, Christian, in the arms of Jesus
I placed a special welcome from her favorite store across the country in her room. Did she notice?

Maybe I did too much in my own strength, albeit waning and waxing until the day came.

Maybe instead it was obedience to the Lord that so many details were honored in anticipation of a good result, a finishing well.

Maybe the one that did not get cared for along the way was my own flesh and blood, although I really tried . . .

Maybe our need for firmness and clarity covered my love for her.

Maybe now that I am purging everything I can to clear my mind, my Lord will let me know what happened with this caregiver thingy gone awry.

Maybe there simply was no way this arrangement could succeed no matter how hard we tried.

Maybe there will be restoration one day, maybe not.

For today, I still grieve.

JJ

No Place to Go

Steve pic of A Lori stuff 7.27.18

This morning as I watched my gracious husband take pictures of the items a family member had claimed were stolen, I realized I had no other place to go.

Who would understand the betrayal after having suffered a severe health setback trying to care?

Who would understand that every level of commitment virtually every day this entire year would end with them throwing my heart against a brick wall?

Who would know the many levels of loss that continue as I seek treatment to get my body back to baseline again?

Who would understand that grieving this failure, this dead end would rekindle the sorrow from heartaches in the not-so-distant past as well?

How does that come to any kind of closure when your heart is crying, your thoughts are heavy, your body is aching, your world is smaller, and there are piles of things to do around you?

There is only one place to go:  to the One Who grieves for my pain, Who grieved tears of living blood for the sorrows of us all:  more than I will ever know.

My Savior, Jesus Christ, faced ridicule, betrayal, torture, and unjust punishment that cost Him His life so that I may be free one day of lesser losses that come with this life.

Just gotta lie at the foot of His cross for as long as it takes until the burdens are lighter, so that I may go on even better somehow.

My joy is tiny today.  My Jesus is bigger than life itself.

Jesus, take the wheel.

JJ

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.

JJ

Earlier Today

The salesman said that the service guy dropped the bed liner in earlier today (yesterday).  I noted that the General Manager said that they could drop in a bed liner in the truck for me for the same selling price.  There are 2 problems with this:  1)  I had just gotten off the phone with the GM about an hour ago and 2)  the bed liner the salesman was showing me was DIRTY!  There would not have been enough time to install it and it should be at least as clean as the truck in time for my test drive, right?  The salesman said that they often had old bed liners left lying around.  And since I wasn’t born yesterday, I didn’t believe him.  I took a test drive to Steve’s workplace for him and me to have a little fun with it, accepted the man’s business card, and parted ways.  It wasn’t even the year of vehicle for which I had asked and the cheap air freshener smell had given me a headache!

We are not sure if we are in the market for a new truck or not.  The added expense comes at a time of a few life transitions, the biggest one being the visit and possible moving in of my Aunt Lori very soon.  Transporting her across the country in our Nissan Frontier, towing a travel trailer, has challenged several logistical parameters even our  German shepherd pup traveled in a kennel in the bed of the vehicle.  (The cage is on order, just in case!)  Renting a full-sized truck proved to be extraordinarily expensive and it’s a bit late to arrange airline tickets.  The latter involved staging a car at a local airport, a fair amount of expense that would come from the purchase of two air fares (since she is unable to travel alone), and my hubby returning from Florida separately with the pup and Camplite.  Doable, yes, however not so easy to implement when my Aunt couldn’t decide what she wanted to do about any of her affairs.

And so we are making decisions based upon prayer, speculation, clinical judgement from my experience as an occupational therapist, delay/disinterest from my Aunt’s adult children to act on their Mom’s behalf, already considerable costs-to-date, and reading between the lines of communication with extended family at a distance.  Sadly her health continues to fail, that is for sure.  We will be in her home State soon for my next medical appointment so it made sense to begin her trial visit with us with our return trip home.  I have been very stressed attending to all of the details of this process.

Regardless, plans are still coming together except for one big one:  deciding if our Nissan Frontier King Cab 4×4 SV is adequate to make the trip.  Can we tow a larger travel trailer that is just within the specs of our tow vehicle even with the new Anderson load bearing hitch?  Can I survive in a jump seat of a King cab for a cross-country trip, modified with pillows and a step stool?  Will Elle survive alright in the 90+ degree heat in a kennel in the open air, if shaded from the sun?  I have my concerns for her!  She was born and lived as an “outsider dog” before we got her 10 years ago.  A lot has transpired since then, including her becoming a lovely house pet and indoor companion for me!  Sorry pup!

dog in truck, jump seat, German shepherd, woman and dog, travelling, Nissan Frontier, pet dog

The expense of a larger truck is considerable.  Stay tuned.  I do like the 2017 Ford F150 Super Crew 4WD . . . but I won’t be visiting salesman Jim anytime soon!  Ugh.  Next!  JJ

UPDATE 6.29.18:  No new truck at least for now!  We considered last minute airline tickets for me and my Aunt and staging a vehicle at the airport to get us home from there.  But it is time for us to come together as a family for this 3-week visit and it was my hubby who decided the best way to do that was a road trip together.  Low and behold with one day to spare, a full-sized rental truck with towing capacity became available in our city.  IT IS EXPENSIVE yet the right thing to do.  For now anyways.  :J