This is getting old already . . . not to mention the seizure attacks around 11:00 pm last night. Or is it still tonight? I digress.
A different role, a place all too familiar
As the rest of our lives carry on with big news: hubby passed his FAA oral and flight exams! Just like that I am the wife of a pilot, again!
Alas the doldrums of daily routines still carry on
Finally getting to work in my own garden late tonight after devoting much of this past season to a community park and much of this weekend recovering from another setback, ugh. The blackberries are no more. Elderberries are up next!
It was 8 years ago that I got sick just 5 days after buying my first truck
Now it’s a few weeks after an upgrade in same . . . does this mean that I will get well and drive off with my beloved into the sunset? Oh how I can dream, right? That we did the right thing too.
One more time things come around again but really are not the same
For we can never go back only forward as each breath moves us on. I guess we want to be who we are now with the romanticized memories of what we once knew: the fullness of our present with the innocence and perhaps mistakes erased from our past? Yeah, just let it go.
Look to our Lord and His return to make things alright my Gentle Friend
He will return in glory, in judgement, in power, and the makings of everything better forever good. The best part: TIME will no longer be our measure but only to dwell . . . lain in the rapture of ultimate love for always.
Sounds wonderful to me. Do you know Him too? Oh I pray that you do and you will be there with me when the stuff of life moves on for good. May this music minister to your soul as we wander towards our heavenly home. JJ
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.
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
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)
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
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!
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.”