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!

He really cares: Part 2

Please forgive me for leaving you hanging, Gentle Reader!  I left you hanging by a thread in this blog almost 2 weeks ago.  Clearly I made it out o.k. from the doctor’s office!

charcoal sketch, sketch of woman, side view of woman, head shot, female drawing, picture of lady

Since there were many hairy details in the horrible situation I was in on July 29th, I will shorten things up a bit here.  In my last post, I ended whilst lying on my side, paralyzed and inches from the floor after a convulsive episode in the exam room of a Physician’s Assistant (PA).  The second of two severe seizure attacks had occurred since entering this room and the second of two episodes of neurological collapse was in progress.  Eventually the PA returned and forgot everything I had ever told her about what to do in this circumstance; she even forgot that in the first episode (that she had witnessed) I was unable to speak or move.  All she kept asking was, “Do you want me to call an ambulance?”

Finally I was able to break through what was happening in my brain to express the greatest need in my life at that moment, “PLEASE REMOVE MY GLASSES!”  As she wrenched my neck and lifted my head I screamed in excruciating pain from having had my eyeglasses and sunglasses wedged against my face for so long.  Extreme sensory sensitivity accompanies the worst convulsive episodes; pain in particular is magnified as if you had tried to electrocute me!  So when the PA tried to remove them, it was as if a bolt of lightening had jolted through my face!  She asked again about the ambulance.  “Did I want to get up onto the table to be more comfortable?”  I could not speak or move at all.  Then she left.  A long time later she returned.  Then she left.  A long time later she returned.  Then she left.

To pray was my focus since the trained medical professional was of no help!  Thankfully after a long time, it was the Lord Who helped me twist and turn my torso so I could lie on my back across two chairs with my legs pulled up underneath me.  It took about a dozen tries before I could lift my head segmentally to reach a sitting position with my head supported by the wall behind me.  Never did a wall seem so comforting . . .

Eventually a nurse, the really sweet one, came into the room with a wheelchair so I could be taken to the bathroom.  Herein I benefitted from my training in transfer techniques as an occupational therapist.  My arms were starting to regain motor control but my legs were like dead weight .  I lifted them one at a time with my right arm (more functional than my left) off of the leg rests of the wheelchair and onto the floor, braced myself with the grab bar along the wall next to the toilet and pivoted myself around; I reversed the procedure with more adaptive techniques to do all of the things I needed to do in the bathroom.  By the time I was wheeling myself out of the bathroom, the really sweet nurse had returned to take me to the hospital in the building next door.  At last, over three hours later and feeling majorly beat up, I would be getting the IV fluids as ordered!

Unfortunately the IV “Lactated Ringers” didn’t help me much.  The nightly convulsive episodes returned followed by wake-up tazoring the next morning.  I was so beat up from everything.  The following evening I did make it to the grocery store when things had temporarily stabilized.  Such an ordeal!  Calming my anger at my medical providers has taken every day since then.  The doctor never mentioned it when I saw him last week.  He did not even ask if the IV fluids helped me to feel any better.  Sometimes that guy is just too focused on test results (or whatever) to examine the overall process of this patient’s sickness, the clues that might be hidden in plain sight.  Oh well.  The second appointment to review additional test results last week was cancelled (as are about 35% of his appointments).  A minor flare up of the ol’ anger distracted me once again, gratefully for less time . . .

So who really cares if I live?  Suffer?  Die?  I have spent the last 15 days meditating on this.  The real question emerged beneath these cries and it was not to find out if anyone really cares or not.  There are people in my life who love me and for this I am grateful.  The real question turned out to be whether or not I had submitted this illness to the Lord as a living sacrifice.  Who is really in charge here?  Did I offer it to the One Who sees all, loves me more than anyone?  Could I view laying this illness at the Lord’s mighty throne of grace as an act of both obedience and worship?  He calls believers to do this, by the way in Romans 12:1-2

Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship. Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.  (Romans 12)

The Lord knows that our bodies are not perfect and that our world is not perfect.  Why would the God of the universe desire me to make alms to Him with my weaknesses?  He desires our devotion in all things and loves me and you just as we are.  But wouldn’t he rather have a tithe or act of service?  NO!  He is God not some distant authority figure or Santa Claus.  He loves us, has mercy on us, completes us, pours out His blessings, defends us, and promises to make good out of the fallen things of this world no matter how ugly.

1 Peter 5:6-11New International Version (NIV)

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 11 To him be the power for ever and ever. Amen.

I am holding out for the promise that lies within these words.  He will restore me in due time.  Who cares for me?  Who cares for you?  The Lord Jesus Christ, that’s Who!  In Him we will find rest no matter what may come our way.  We can be sure of it!  JJ