Gathering medical records and other documents, making travel arrangements that accommodate my sensitivities, and putting together a timeline of the serious illness I have been battling for 8 1/2 years has been an emotional process for me. Just surviving to this day has been a traumatic experience. The blessings are there too yet not as clear right now with the hundreds of sheets of medical records behind me as I type this post.
I have endured so many dead ends and dashed dreams for recovery, physical damage from thousands of convulsive episodes, tens and tens of thousands of out-of-pocket expenses, and so many losses on every front of our lives. One truth is clear that I would not have survived this far without my faith in our Lord, Jesus Christ. He was my Rock when my breathing would not start in the darkness of night or my legs would not move to get me to the bathroom. Both my beloved Steve and my Lord carried me through it all to this moment in time.
Regardless of what has gone before us, Steve and I are pressing forward, hopeful for a good result at an upcoming consultation at the Mayo Clinic. For the first time since the onset of this serious illness, I get to see one of the top Doctors in neuroimmunology at THE top medical facility in the country. That is humbling. I am grateful.
Now is the time to pray for a cure to the daily convulsive episodes. Lord willing, I will be well! Thank you for your love and support, Gentle Reader. Love to you, 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