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

 

When He is All You Have

My beloved is the best . . . but he is asleep as I bemoan my sorry lot.

He holds me close . . . until I react to some scent on his manly body.

It should have a wonderful effect . . . but it does not anymore, sadly.

Such are the ravages of severe illness . . . the kind that makes everything hay-wired.

If I could explain it to you . . . then it would be from understanding myself,

And I cannot dear friend . . . so woe are my words, this night, once again.

But not forever, all night, or after a little while . . .

For He speaks into my heart song . . .

And makes all kinda nice.

My Jesus understands for he hung on a wooden cross . . .

With nails in his hands and feet, a spear thrust in his side.

I could never endure imagine that kind of pain, even if my head banged all night . . .

Let’s just say my Lord knows suffering so His tears comfort me alright.

Even if this Doc or that hath not have the medication right for me . . .

My beloved says healing will still come and my own fasting indicates so.

I shall do what I gotta do to manage this chaos . . . even if I never leave the table by the window at the café of the health food store

Because I can’t think straight and seizures are pushing up from within:  unsafe to make my way home until I stabilize.

“Cmon my Jesus, drive me home

It’s dark already and you are all that I have tonight.”

And so He did when He was all I had.

Goodnight again.

JJ

 

 

 

Full Moon Follies

My beloved qualified as my “Night in Shining Armour” last night.  If only it were for a victorious time instead of quite the opposite . . .

One would hope that significant interventions to quiet my inner storm would start working already.  Or at least tame the tempest beast when challenges such as noxious exposures and the mysterious workings of a full  moon come along.  I have read a hundred or more testimonies of the latter:  that for persons battling chronic disease, symptoms can worsen around the time of a full moon.  Perhaps it coincides with the life cycle of various bacteria or parasites?  Who really knows?  What I do know is that the worst of everything came forth and both of us are pretty beat up today from the lack of sleep along with the emotional and physical trauma.

  • Continuous convulsive spikes of every dimension
  • Headache, joint and muscle pain, ringing in my ears, dysarthria, bradykinesia, left-sided parasthesia, hypersensitivity to sensory stimuli
  • Visual anomalies (spots of bright lights when my eyes were closed)
  • Cognitive slowing
  • Difficulty breathing and communicating
  • Incredible frustration and discouragement leading to hysterical crying and anguish
  • Neurological collapse requiring maximum assistance with feeding, toileting, and dressing
  • Eventually passing out in bed around 2:30 a.m., partially dressed with no recollection of falling asleep

The 100% THC-free CBD oil provided a temporary pause in seizure attacks as did a large dose of liposomal Biocidin.  The entire episode finally ended shortly after taking my (3rd) nightly dose of Low Dose Naltrexone.  I must add that the only positive part of this experience was when I could open my eyes and saw my hubby in his night clothes as he cared for me.  I liked that!

Please pray for us.  We are exhausted.  The demands of life go on just the same.  My MRI with NeuroQuant study our of State will be delayed due to severe weather expected tomorrow; I am hoping to reschedule the appointment for later in the week.  Let’s hope that the NeuroQuant and the updating of multiple medical tests this month will be fruitful, Lord willing.  My Jesus goes before us and sees us through it all.  I trust in His timing, His plan for our lives.  Thank you for praying.

And thank you Steve for your heroic love and care.  May the Lord carry you today.

We wait on the Lord this day and always as we try to figure this out!  This illness is killing us. JJ

A Letter to my Docs

Today I landed on some new ideas that we pray may be of use for my recovery from this serious illness.  I’ll let you read it for yourself.  Lord willing, I will get well soon!  Take care Gentle Readers and Godspeed.  I am praying for you too this day.  With love, JJ

Seizure attacks kept me up all night last night and my sleep cycle is now upside down again.  I had to stop the Buck Shot (i.e. nutritional injection) due to numbness in my right hip that has yet to resolve; ruling out this week if there is any possibility that it is the Thyroidea.  I have not slept since yesterday.
The “Holy Cow” moment came as follows.  Lying in bed unable to sleep I realized that my dog eats Canadian goose poop on occasion.  I researched parasites/infections from goose poop and only toxoplasmosis seemed to be an infection that I could have gotten from her.  Sometimes my stool smells like hers!
 
Looking into this further I found the following article about latent toxoplasmosis in humans:
 
 
Of interest were the remarks about hepatitis in acute toxoplasmosis infection (yes, October 11, 2011 this illness began with viral hepatitis after contaminated reservoir water exposure) and the effect the parasite can have on a variety of brain cells including astrocytes and neurons.  In a study involving 17 countries, cryptogenic (no known cause) epilepsy is 4.8 times more prevalent among toxoplasma seropositive persons.  “There are evidences that t. gondii infection has the greatest impacts on the hippocampus and amygdala.  And get this:
“Another likely hypothesis which t. gondii could cause neurodegenerative and psychiatric disorders, is modulation of different neurotranmitters especially dopamine in brain by the parasite (reference).  The t. gondii genome is known to contain 22 aromatic amino acid hydroxylases that potentially could directly affect dopamine and/or serotoinin biosynthesis.”
Are not phenylalanine, tryptophan, and tyrosine AAAs?  (My naturopath has prescribed phenylalanine to help with dopamine trafficking!)
“Treatment with a dopamine reuptake inhibitor (GBR 12909) alters the behavior of the mice infected with t. gondii (reference).”  [Sounds like my HC7 treatment plan . . .]
“Furthermore, t. gondii has two genes encoding tyrosine hydroxylase which that produces L-DOPA (reference).”
“Likewise, inflammatory responses are the innate defense against t. gondii infection (reference)  [Got plenty of inflammation; this statement refers to psych disorders.]
AND NOW FOR A REFERENCE TO AUTOIMMUNE DISORDERS:  “There is evidence that t. gondii infected astrocytes and microglial cells release of IL-1a, IL-6, and granulocyte/macrophage colony stimulating factor (GM-CSF).  On the other hand, IL-6 may mediate the exacerbation of autoimmune disorders in the CNS; in addition, there is strong association between IL-6 and neurotransmitter production (ref).  Furthermore, in vitro stimulation of neurons to secrete dopamine and probably other catecholamines by IL-6 were also reported (ref).”  [Multiple brands of GABA made me worse.  I was recently diagnosed with an autoimmune disorder.]
RELATED TO MY STATEMENT ON FACEBOOK (to my naturopath) THAT 5-HTP MADE SEIZURES WORSE:  “On the other hand tryptophan is an essential amino acid for t. gondii replication (ref).”
Kynurenic Acid (KYNA) was 12.5 on my last Nutreval (normal is below 7.1)  “Astrocytes play a pivotal role in the production of KYNA in the CNS, because astrocytes are the main source of KYNA (ref).  Likewise, astrocytes are one of the most important cells that invade by t. gondii . . .”  [Holy cow.]
JUST WHEN IT COULD NOT GET ANY CLEARER, READ THIS FROM ANOTHER SOURCE AS NOTED BELOW:
“The genome of the protozoan parasite Toxoplasma gondii was found to contain two genes encoding tyrosine hydroxylase; that produces l-DOPA. The encoded enzymes metabolize phenylalanine as well as tyrosine with substrate preference for tyrosine. Thus the enzymes catabolize phenylalanine to tyrosine and tyrosine to l-DOPA.”
 
Alrighty then, time to get me tested for toxoplasmosis right away!  My dog eats goose crap.  Not sure if it’s worth it to get her tested or not so I’ll ask the vet today.
Please advise how to proceed.  Every night and morning, my life is hell.  (Signed JJ)
UPDATE:  Our dog was negative in an office screening of her poop for parasites.  Still in hot pursuit to rule out this infection due to exposures mentioned above.  Stay tuned peeps!  JJ
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Just another day

Today was much of the same:

Back to bed after hitting the wall, so to speak.

Hours later I cleared

And a phone call to my beloved at work

Got me in motion to do the tasks at hand.

The story doesn’t vary much . . .

Maybe an outing to test the waters may come

Only to push me back a few days and then

I wonder if I have really come forward much at all.

But “it takes what it takes” sometimes;

The good, the bad, the ugly like an old western:

I know the patterns at least so I cry less

Resting comes more easily as does opting out

‘Cause life is more about the meaning than the doing anyhow.

The last sentence in this prose

Must point beyond my tale of woe

For when a beloved friend faced losing a family member so dear,

I realized the blessings that abound in my life even so

Even so I will go on and things will get better of this I am sure.

It doesn’t have to be today you know!