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

I’m still here

A brief update:

A second trip is now behind me to see my Craniomandibular Specialist in a southern state and the problems plaguing me for 6 1/2 long years are significantly less and yet my progress has plateaued.  Maybe it’s still the fatigue of travelling alone for the first time in 11 years?  Holy cow, I did it!  And ugh too.  It was hard.   Regrouping and resting now, changing up a few things, and I am noticing that those changes are already helping, for example, to  reduce the daily headaches to a trace level.  Amazing!

I am tempted to be discouraged about the plateau in progress and some setbacks but I will choose not to be so.  Both happen in the jagged line of recovery from serious illness.

Life goes on and the care of a family member in that same southern state began before the first medical trip.  Looks like the Lord had more planned than we originally thought when my hubby and I took a leap of faith to seek treatment 1,000 miles away from Indiana!  We are now preparing to welcome my Aunt into our home for 2 months this summer after many hours of preparation, work, and communication with multiple parties.  There is much to do!

Seems that the Lord wants me to keep moving forward as he has created a new role for me with increasing responsibilities:  caregiver.  I never thought that it would be harder to care for one tiny lady than the TWENTY I served in a day in my professional role as an Occupational Therapist.  Right now it is!

My Doctor’s office cancelling 7 medical appointments already this year due to chaotic scheduling issues confirmed my pursuit of a new integrative medicine specialist.  My Doc is upset and I am proceeding to transition some of my care to her anyways.  The change is refreshing and creates hope in some areas not addressed of late.

Steve and I have several decisions to make should my family member decide to move in with us later this year after her summer visit.  Some parts of our life could accommodate her easily, others not so much.  We will have some financial decisions to make involving vehicles, housing, and several lifestyle choices.  Could be good?  We are exploring many options and leaning on the Lord as we go . . .

I am a bit overwhelmed with the new modalities that have come since pursuing specialized Temporal Mandibular Disorder treatment, from application of a TENS unit to switching out dental appliances every time I eat or sleep.  Wonder where I have been instead of writing updates on the Hope Beyond blog?  I am still here, flossing my teeth 4 times per day!  Spitting mouthwash into a baggie in my truck after eating between appointments when away from home is not that unusual for me now . . . from the back of the parking lot where no one can see me of course!  Oh my!

The biggest change of late is having a bit more energy and mental capacity to do a little more a few days per week.  I am exceedingly grateful for this.  Thank you Lord!  We anticipate a lot of changes, projects, and the need for both physical and mental stamina this coming year and looks like it is coming little by little.   I hope the finances for everything will follow as my Go Fund Me campaign has also plateaued!  We will figure it out, so no worries.  The first of the two medical trips is now covered, gratefully.  God is good and the Great Provider has always cared for our needs.  I can see a possibility of working some within a year a so depending upon the needs of our “new” family member; she may move in with us permanently or choose to live closer to her adult children in Michigan.  Just not sure yet.

I am tired.  Healing takes sooooo much energy from healthy food and rest, good supplements, time with the Lord, and restoration activities with my beloved Stevers.  Sunday was my birthday so we did that last one.  A simple day was a great gift with my bestest buddy.  I love him so much.  I am so very glad that you are still here too.  I could never have made it today without you Babe.  Thank you Jesus for Steve.  Please bless him this week and encourage him as he works so hard for both of us.  Infuse him with your Spirit to lead us through this maze of life in which we bumble along.  Help me to love him, respect him better and better too.

woman, birthday cake, birthday, carrot cake, celebration, lunch, with husband, Christian, woman kissing cake, table by the window, lake view

Carrot cake was my birthday treat at the Oakwood Resort on Lake Wauwasee

I know that the Lord has gone before me and been with me, drawing me to Himself and bringing me to the moments He planned for me yesterday, today, and tomorrow.  I lay everything named here in your mighty hands as I prepare to go to sleep.  I know that You are still here too.

And on that promise all of us here may rest.  You too.  Godspeed Gentle Reader, JJ

 

Move freely, heal well my dear

 

dancing

The importance of moving

Cannot be understated

The body not the soul,

One’s frame sans the stuff.

Blood flows, lymph drains

Breath deepens, waste can leave

If only we help it with

A little muscle contraction against gravity.

[So easy for her to say to me today!]

I cried in fear

As physical therapy began

I’d been here before

And knew about the score.

But wretched seizures

Met me by each session’s end

My body erased

The good that had ensued.

It could be different

Now that the beast is tamed

Perhaps give way to healing

And actually doing my home exercises?

Ah what a delight that will be

I do see it coming out there

Can almost reach it, so sweet

This is the beginning of healing!

Just had to mourn

Seven years lost since

The time I moved with ease

When no fear waited in every corner.

[Sigh.]

Today marked a new beginning

This time appears to be for real

Thank you my Jesus, for carrying me through

Time to give in to freedom as the healing is now here!

JJ

 

A Matter of Perspective

humor, bathing suit, top, insert, perspective

Alone on the beach I lain

Broken-hearted and abandoned,

Missing my other half

A bit humbled in the warm sun.

She left me here all alone

Doesn’t she miss me or know I’m gone?

Maybe she broke free from the tyranny

Who needs a padded insert to swim in the surf anyways?

I suppose you all figured out the item in the picture by now?  I found it to be hilarious finding it on the sand of the beach at Port Canaveral, Florida earlier this month!  My beloved and I were there to witness a rocket launch a mile away to the south along Playalinda Beach.  It was surreal.  I wonder if the gal missing part of her bathing suit top felt the same way?  🙂

That day was a bit of an oasis in the middle of a medical trip that continues to change my life for the better.  I was exceedingly exhausted just 1 week after treatment began and felt out of place sitting on a sandy beach with large, acrylic dental appliances in my mouth.  I was unable to eat without changing out appliances (which meant rinsing them in a Ziploc plastic bag with paper towels to soak up the mouthwash) and was nearly nauseous with a lot of head-jaw-neck pain from the aggressive dynamics achieved by the splints.  On the other hand, Steve was geared up to hit the waves in our outrigger canoe!  We both slathered on the sunscreen and lugged our stuff up a long flight of wooden steps, over the berm, and down onto the beach.  With a big umbrella in-hand, I was going to make the best of things that 86-degree day  . . .

And so we did.  I sat in front of the most majestic view you would never find in our home State of Indiana (note new cover photo above!) munching on my lunch, brushing dental appliances, and taking pictures of the coolest dude on the shoreline.  A few hours later I witnessed the magical sight of a rocket being launched into space:  a satellite developed by the same company that Steve works for in Indiana.  Steve had gotten an inside scoop from co-workers at the Melbourne headquarters of how to get the best view.  (Incredibly Harris allowed him to work there remotely between my medical visits and before we would return home.)  The launch was spectacular!

Harris, rocket launch, Cape Canaveral, March, 2018, sky, trails, space

 

I have come to believe that the Lord cares for everything in our lives from the mundane to the big, spectacular moments in time.  He attends to every detail, crafts them for our best good.  I am thinking that many of the rewards in life generally come in some way or another when I am able to move off my limited view and trust that my Lord, Jesus Christ has a bigger plan.  It just might be a good one.  My change in perspective will help to find it.  The fact that so many years have held me captive with much agony in the past is really no predictor of what the future holds.  I simply do not know.

This leap of faith to pursue a new treatment approach 1,000 miles from home is changing my life day by day.  The minor setbacks are easier to take than in the past and don’t last very long, gratefully.  My perspective on most things in life, my expectations, my faith, and so much more have changed accordingly.  One of the sweetest rewards is sharing this  newness of life with my hero, my Stevers.  I love him so!  And I am so proud of him, grateful for him, and in awe of his strength, faith, and love during our eleven years together.  The anniversary of our first date is coming up soon!  Oh I could go on . . .

How about if I just end with another awesome sight from the beach that day.  Isn’t he just the coolest dude ya ever did see?  I love you Stevers!  :JJ

outrigger canoe, beach, surf, OC-1, carry, carbon fiber, racing, Mocke, life vest, life jacket,

My River Bear carrying our OC-1 out from the surf as the tide rolls in onto Playalinda Beach, north of Cape Canaveral, March 1, 2018

Moving forward with the next big thing

Sure is humbling sharing the nitty gritty of an ugly illness with the world.  Yet I would not be a good steward of the experiences the Lord has allowed in my life for His purposes if I hid them in shame.  So with courage and trust that this will be used for good someday, I share with you my newest video:

Please consider helping us out with our campaign covering us in prayer as we embark on this new treatment adventure for me.   We are hopeful again!

For more details on this amazing story, check out the posts below from this past week.  Thank you to all who have participated already.  We are humbled and exceedingly grateful!  🙂

And Godspeed Gentle Reader.  I appreciate you so!  JJ

The Next Big Thing

Pursuing the Next Big Thing

Julie’s Neuro Treatment