The way it should be

We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”

I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way.  The cleaning got done at 3 o’clock Monday morning!

The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.

One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.

Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.

Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.

My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off.  He never does that.  I benefitted tremendously.

The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them.  My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.

The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home.  My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.

Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.

I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it.  Someone named “John” supposedly signed for it but it was never found.  They reimbursed me for both the check and the “stop payment” fee.

I could go on . . .

If there is anything that I have learned over these 5 years of illness is that things are never as they should be.  Well actually I knew that long before 2011 from my work with PEOPLE in healthcare.  Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes.  In the end it’s not about the individuals really.  It’s about where I am placing my trust.

A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.”  Yes indeed.  Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ.  We are to love everyone else as unto the Lord.  Only He will never forsake us, never fail us, and deliver right on time every time. 

Alrighty then.  This rant is now over.  It is just before sunrise and my nurse will be here in a few hours to administer my care.  I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts.  Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways.  I will trust that the Lord’s will will be served once again.  So before I stop making any sense at all, I will end here.

It’s probably the way it should be?  JJ

 

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Vampire Diaries 4

 

medical mistakes, cell phone, overdose, cause of death, vampire diaries, doctor

How many lives do I have left?

The cat might ask after a near-miss,

Such is my ponderings this night

As yet another disaster was thwarted.

They sent me meds altered in color

In different bags than I had known

An infusion today would have doubled the dose

And sent me aloft to never-never land.

I caught it at once (albeit rattling my cage!)

Quickly they offered to cover their tracks

Shall I trust them once more this time, alas

They have made less grievous errors before . . .

Feels like the night I saw the angels came

Surely life is marked for more than this (?)

The suffering has been great despite the holiday

With less beatings today (yeah) guess my brain’s awake.

Carry on as this life drones with the beast chronic Lyme

Drugs, pills, tinctures, creams, shots, IVs, diets,

Saunas, flushes, therapies, back crackers, tests

The list goes on as the procured money bags yet drain.

I guess it’s all meant to be like this alright, eh?

When hazy is the road hanging onto my Lord’s cloak

Hoping for an infusion of, well, hope not more strife

I cry, “thank you Jesus for Your Divine grace once again.”

Maybe soon may we get in a little more playtime than this?  JJ

 

Vampire Diaries 2

hebrews, Hebrews 13:5, abandonment, promises of God, alone, loneliness, scripture, depression, sorrow, loss, illness, sickness, hope

Tears going up and down a lot this day

On the roller coaster of emotion I find myself on:

Help cometh x2 but test results won’t satisfy

As here I sit with my neck aching all through my brain.

I tried.  I really tried to figure it out and failed.

The symptoms that remain still taunt my peace

Leaving scars, leaving woes, leaving loss behind the hope

And yet my breath prevails so in and out I will also go today

To match the pull of the vampire’s teeth left in my chest wall.

The infusions continue instead of a long-desired break

The bank will love us less, the medical folk perhaps more

Whilst someone’s Mercedes payment will be made

And my saga continues on Big Box Store hamburger.

Hope always seems just one more day out there somewheres

Leaving me here beat up from this morning’s episode of torment

A snuggle with my husband got transformed into caregiving

And more hours were lost in the aftermath once again.

At least my dog seems to understand as she nudges her nose at the leash.  “Can’t we go now?” her soft brown eyes contend.

Relief might come in the mail soon

Or maybe not; it’s hard to tell

So I’ll keep calling on my Jesus for now

His calling card never leaves and never fails any of us anyways. 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
12 step, promises, experience, benefit others, AAACOA, ACOA, Al Anon, Adult Child,

The Dad that never left

Perhaps it is more of a blessing than anything else that I have more time for reflection these days.  After the double-loads of laundry, medical management, treatment-and-recovery, self care, and various household duties are completed, there are generally more hours than in my past to think about the stuff of life.  On Father’s Day yesterday, I started to notice some new parallels between my past and present.  It went something like this.

I was posting a picture of my Dad and me on Facebook when I realized how his generosity when he stepped back into my life has become an important part of my current recovery from serious illness.  His gift about 6 years ago allowed me to create a garden oasis in our backyard.  Here are two of my favorite areas:

Creating the flagstone patio area required graph paper, a ruler, tape measure, and endless gazing from all angles to make the kidney-bean shaped layout meet the vision the Lord had given me.  In the next 2 years the process continued with a pair of 8-foot custom steel trellises then a “secret garden” area (basically a re-purposed dog pen!).  The planting beds came later as I decided that we needed more privacy from our neighbors behind us and that I wanted to have a garden-view beyond each room of the house.  The bed on the right in the 2nd picture is largely of native plants and a key component in earning a Sustainable Garden designation from our local cooperative extension office.  The aqua custom shade sail was an incredible find from the “sale” page of a company by the same name.  Now that the design is complete the plants have matured and my heart is home.

Dontcha know that my mom was a gardener?  She would hunt down the groundskeeper at the local zoo if needed to obtain a plant start of a specimen she just needed to have in her yard.  Composting, vegetables, a mounded hill, hanging baskets around the hot tub spa . . . she had all the elements that made her heart happy out there in her suburban back

Mom in Spa

yard.  Her creation came together because of the generosity of her parents too.  Some may call it an inheritance.  I call it the chance to create something beautiful from the sorrow of a lost family member.  And I think it’s o.k. to spend some of it to make the process of going on without him or her a little nicer.  Do something that makes your heart happy!

Flash forward 4 years from when the “bones” of our own garden were installed and I am exceedingly grateful for what the Lord has allowed me to design, to create.  Lying sickly on that chaise lounge last summer when it looked like there would be little hope for recovery, brought solace of sorts.  Lying sickly on that same chair this summer after taking treatments that are slowly giving me my life back is bringing hope and the flow of some new creative juices.  My husband, Steve, just smiles a bit when I talk like this.  He knows that could mean a little more trimming around a new garden bed or hauling of something heavy to make it happen.  Oh how he loves me so!  Well I’ll let ya all know how it turns out for sure!

Steve brought me to see this home on our fourth date.  He wanted to know, “if things worked out between us could you see yourself living here?”  Talk about pressure!  I was visiting him in Indiana for the first time from the Chicago suburbs and certainly was not about to make a decision on the spot.  At least out loud, that is!  But I knew that the bush in the front-and-center of the bay window was a Miss Kim Lilac and just like the one I had lost with the townhome when my former spouse left me.  I also knew that the bush next to it was a burning bush that gets a magnificent, fiery shade of red in the Fall and just like the one I . . . well you can see where this is going.  It’s like when I viewed Steve’s profile on Yahoo Personals and saw a picture of him with a radio-controlled airplane that reminded me of the flying competitions in which my dad and brothers flew line-control planes when we were kids.  Of course I knew that the house was a great idea; I just wasn’t going to tell Steve anything just yet.  The home he purchased before we were married became a blank slate for me in remaking so many years that the locusts had eaten . . . . (Joel 2:25)

So I hope you can see how a simple thingy like some flower and vegetable gardens can be so meaningful to someone like me.  The draftsman in my Dad has become the designer in me.  His surprise generosity allowed me to create a living oasis that was an interest I shared with my mom when I became an adult.  Finding a loving place to realize these gifts would come in a way like never before when I found my intended beloved in the arms of my Stevers.  Solace, restoration, and hope were all set in motion regardless of my life’s circumstances according the plans of my Heavenly Dad, my Heavenly Husband; He knew all along the seeds He had planted in my heart long before I could ever dig in the dirt of life myself.  And just as life on this green earth began in the Garden of Eden, so do our own lives thrive in the planted spaces in which we are tilled and turned, watered, pruned, and nurtured until beauty bursts forth in scented color, in hope beyond that which we can see.

How can I be sad about the losses in my life when my Heavenly Dad has always been there with me?  From my garden bench I bid you a “Happy Father’s Day,” Gentle Reader.  I pray that you, too, will live in the fullness of life that grows more grand with each passing day:  a garden oasis in your soul where the One Who knows us so well can make everything meaningful, anything beautiful in the noon day sun or under the shade tree too.  JJ

Dad & me at his trailer