Starting Over

Start today and create a new ending

Might be my mantra on this date:

My calendar awash with the death of my phone

Leaving empty spaces in the blocks that measured time.

Oh how I valued my days, my worth by that thingy

When asked to justify this or that,

I could find the day/the hour when the lost hope began

From another closed door once opened with promise, no less.

(Oh why cannot I recall the goodies lain in there too?)

So many files on paper or electronic memory stored away

In my weighty storage that marks thy years, thy self

Perhaps defining who I was over the decades

Including these five years of hell that came to roost.

“But what if I forget?” was be my byline to save

The records of divorce, of deaths, of expertise, of treatments once lived . . .

I suppose I collected hoping to arise somehow better

And yet somehow as my receptacles filled my person emptied too.

Perhaps now is the time to infill on the inside

Not in a black metal coffin with folders numbered by letter

But by character and trust:

That the Holy Spirit within me holds it all in order anyways.

He knows what I will need, where the important things are in His care

When I draw on my Lord’s infinity —

Not the confines of my mind or spaces

Lest I limit my future by my past by carrying too many things.

Yes, let the purging begin.

Let the trusting run faster and freely.

Let the light of hope return even in the faintest of twilight.

Let me start over with a new ending:  this time Divine.  JJ

*****************

Gentle Reader:  This day for us both “I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in his holy people, and his incomparably great power for us who believe.” Ephesians 1:17-19Niagra Falls, Buffalo, Canadian, falls, rainbow, trusting God

 

Only the Moment

Only in this moment are things not as they should be:

Soreness for no reason at all

Sizzling in between the neurons rising up, rising over

Dwarfed by insatiable hunger,

Rushes of warmness then cool,

Joints made of cardboard,

Ah the stress for having reached beyond.

Only in the past was there no name for this strife:

Some kind of pain condition they said

(A hormonal this or that)

Traumas from growing up the way we did were

Leading struggles to find my way in life

Whilst blooming late after deadheading, letting go.

Only looking forward can bring true hope:

The day my body calms at last

My Savior returns and all is made whole

Weeping ends, eternal Spring abounds whereas

The truth reigns supreme as all finally agree.

But only now is the moment in which I contend:

Living in love with my intended beloved

With nights as wildly structured as the days

And breaths carried between words terse with meaning.

For only in the moment is where we too must live:

Look around . . . is there more beyond the view to

Seize right away with a kiss of sweetness at the lips?  Surely something can taste good right now!

JJ

psalm 16, psalm 16:11, living life to the fullest, carpe diem, seize the day, peace, contentment

Keep your eye on the ball

I remember hearing this advice when being introduced to softball as a girl.  It didn’t help my game much then but it does now!

Navigating the healthcare system when battling a serious illness requires patience, persistence, and push. (Now that motto DID help me when swimming my 1/2 miler!)  You are your own case manager, not your Doctor.  Getting this fact into perspective quickly was required for me to endure nearly five years of a long and winding road that first appeared to lead to no where.  I am still sick but some things are markedly better.  More about that fills the pages of this blog.  Now back to the brain dump that comprises the topic at hand . . .

  • Getting labs written and drawn for treatment coordinated between 3 healthcare providers and their respective offices has required hours of work this past week.  At this time we are good to go for everything to come together tomorrow.  It is no small matter to have to drive to my primary Doctor’s medical office to obtain the corrected piece of paper then scan and email it to the office of my home infusion nurse.  (Two phone calls confirmed that an incomplete copy was faxed to her agency 2 days ago.)  These results will be valuable for my appointment with the naturopath in about 3 weeks via Skype.  Gotter done.
  • Researching a new theory about a latent infection that may be contributing to this illness has become a new project.  I will allow several weeks for all parties to review my report and, if appropriate, order, interpret, and advise on the laboratory testing that would follow.  This process should take over a month.  Meanwhile the wretched illness continues.  Gotter started.
  • Adjustments in my treatment protocol above the core prescriptions, occur on nearly a daily basis led by what I can tolerate at any given time.  Detox remedies get rotated and new treatments that are prescribed take weeks to fine tune, if tolerated at all.  Beginning a new treatment often takes several weeks by the time I find it either online, order it from one of 3 compounding pharmacies (locally and across the country), correct mistakes made about 20% of the time, and find the best timing to work with the rest of my treatment plan.  Prayer helps a lot.  Just started something that I ordered almost 3 weeks ago.  Parts 2 and 3 are still pending.  Oh well.  Gotter in.
  • Not all the testing that is recommended needs to be done RIGHT NOW.  After hearing back rather quickly from my naturopath about my concern that I might be dealing with a latent toxoplasmosis infection, he recommended 2 new lab tests.  One would cost over $900 out of pocket and the other would likely be covered by insurance; both cover important yet different aspects of my care.  But hey, if we figure out what infection is causing my symptoms and kill it then I won’t need to know how it is affecting trafficking of various neurotransmitters.  The problem will already be solved!  I made the decision; the next steps are in play including copying my primary Doctor on everything.  (His email system failed so I drove my report to the office today.)  Getting her moving forward.
  • Behind the scenes, the ordering, billing, organizing, preparing, and administration of IV infusions-with-related-supplies continues.  I had a question after reviewing the mighty bill from my home infusion company.  I thought they may have over-billed me 15.75 hours at the cost of $945 (which equals the cost of 2 weeks of nursing care!).  They billed me one way at the Start of Care and another way the subsequent weeks.  Over the course of 2 weeks of various chats with my home infusion nurse and 3 staff at the agency, it turns out that we both misinterpreted our initial  agreement:  the written contracts have blank spaces.  They have chosen to bill me at a lesser rate given that their billing methods changed in January of this year and prior to my Start of Care with them.  The savings to me and my husband will be substantial.  Gotter blessing!
  • Sometimes supplies get sent with errors.  This happened twice this past week.  Gratefully I have come to trust the overall process and not worry about some delays too much.  In one example, it actually hurt less to use a smaller gauge Huber needle to access my port when it was sent by accident.  The infusion did not take that much longer so my nurse and I agreed to continue using the one sent by mistake.  We tried this in the beginning and did not have this good of a result.  Flash forward 3 months.  Yellow is my new color instead of white or red!  Gotter figured out!
  • So who is minding the hen house?  All of these exhausting details?  This serious illness I am battling includes chronic Lyme disease but who is tracking my progress after 6 months of IV infusions of antibiotics?  The last appointment with my LLMD focused on other labs instead of ones related to the co-infections of Lyme disease.  Geez oh man!  I should be ready to focus on the co-infections Lyme by now since there is still one major problem to solve:  the convulsive episodes at night and in the morning have not stopped yet.  WHO CARES ABOUT THE OTHER LABS?  The LLMD says that the updated and gold standard, Igenex lab results have not come into their office yet.  Alright so we wait.  Then as I was checking out with the nurse after my appointment my LLMD handed me a piece of paper upon which was written the name and brand name of an herbal tincture to add next for Babesia (a co-infection).  He says it will help with the symptom of night sweats and yes he put it on my clinical report sometime after he had left the room.  I guess I will figure out where to order it from, the dosing, and the schedule.  No problemmo.  Got this one in the bag so to speak like so many others.

Surely I am a “problem child” of sorts for some of my healthcare practitioners.  My condition, orders, and treatment are not written verbatim in any text book.  Is that not the joy and challenge of practicing medicine?  Especially when your client is paying you CASH?  An informed patient partnering in her care is your best patient, right?  I try to be nice about everything and express gratitude for their care.  However it is with respect that I say in my heart that dear practitioner, ultimately “you are not the one in charge of my care.”  My Jesus is!  And under His guidance, I am!  My husband and spiritual leader has much to say in this journey as well!  We are in this together for better, for worse right?  Indeed!

Know what I mean Gentle Reader?  Have you ever gotten a little crazy managing the details of your care or the care of a loved one?  Even the insurance company who holds the purse strings of coverage for services rendered are not in charge of what happens to each of us. Thank goodness as I have to deal with 2 of them!  So for those in Christ Jesus, in the end finding the best care, the best outcomes require us keeping our eye on the ball as unto the Lord and His will for our lives.

Perhaps that bears repeating, IMHO:

The best care requires us keeping our eye on the ball as unto the Lord and His will for our lives.

Maybe a new title is in order here:  Keep your eye on the Lord.  Always.  As it says in Psalm 55:22:

Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken.

I believe it is the Lord who gave me the ability to search, to research, to write, to endure, to overcome the trials he has ordained in my life for His glory, for my highest good.  Lord willing together we are getting it done well.  What do you think?   JJ

1 Peter 4:13, glory, Lord, trials, overcomer, trust, endurance, fiery

 

 

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
12 step, promises, experience, benefit others, AAACOA, ACOA, Al Anon, Adult Child,