But the old friend has no name

My hope went underground when the testing described in my last post revealed nothing of value.  I was crushed.  My beloved hubby had to take part of a day off of work and I had to take two drugs to be able to tolerate the contrast dye.  My doctor sent over new orders to the hospital on the morning of the test, creating further complications.  That new test was not yet authorized by my insurance company.  So would I have to come back and take more drugs, Steve take more time off of work when both tests could be done that day within minutes?  What shall we do?  The radiology staff nor us knew what to do.

We decided that since I do have a secondary insurance, to proceed with both the CT angiogram of the neck and the CT angiogram of the head that day.  The views would be with my head and neck in a neutral position, not in neck extension (which is the position that triggers convulsive episodes).  So I decided to lie on the exam table with my neck partially extended.  True to form, soon after they pushed the iodine contrast dye into my veins a tic then seizure attack erupted!  I couldn’t speak.  Steve let them know the course that these things take so the staff lifted me off the treatment table, onto a gurney, and into an empty room in the adjacent MRI suites.  There we were in the dark until my personal hell decided to stop.  (See here if you haven’t seen it yet.)  Steve helped me to the bathroom via wheelchair, the tech wheeled me out to the exit of the hospital, and we were on our way home.  Somehow I cleaned up once home and got myself to bed to sleep off the drugs for the next 6 hours!  The stress, the drugs in my body diminished thereafter.  All there was left to do was deal with the trauma of what had happened and wait for the test results . . .  No problem, right?

What followed represents the good and the bad of the patient having access to her own test results through the electronic medical record mandated by the Affordable Care Act.  I got my test results 3 WEEKS before the Doctor appointment scheduled to review them! The test was on a Friday and on Tuesday I was reading the radiology reports.  I was crushed.  There were no vascular anomalies that would explain why tipping my head backwards, certain chiropractic adjustments, sleeping on my left side, and a host of other identifiable kinesio/sensory stimuli trigger violent convulsive episodes.   Further, the question remained as to why these episodes are continuing, albeit of less intensity and duration overall, 6 months after treatment with specialized dental appliances?  This treatment brought me an 80% reduction in seizure attacks.  But after chiropractic treatment resumed, that number started to go down:  the episodes had started to increase again.  The “old friend” has returneth but still has no name . . . no cause.

In a future post, I may disclose the profound effect of this dead end in my seven years of battling a serious illness.  Last week after yet another difficult medical process revealed no answers, I really wanted to die.  Within a day that feeling changed and I continued on with my activities of daily living, some volunteer projects, and prepared to attend a women’s retreat within a few more days.  The time away helped some.  I don’t want to die I just don’t know really how to live this way anymore.  There may be some clues in the test results of what to focus on next related to a thyroid condition — or maybe not.  My veracious researching a cause, a cure has come to a screeching halt.  Right now is the time for me to dwell in the eternal space of my Savior, Jesus Christ and lie this illness at the foot of His Cross.  The lies of Satan and his tools of discouragement can go to hell with him, period.

Can’t say much more than that right now.  Tomorrow I need to be up and energetic at an event I thought I could volunteer at in preparation for another project of greater interest to me.  We’ll see how it goes.  My alarm is set.  But the get up and go, the drive in my heart is more asleep than I am at the moment.

Maybe something good will happen soon?  I’ll letcha know if it does, Gentle Reader.  You are always on my heart and the first to know as usual, k?  JJ

Do you see me?

I shook for almost 3 hours in that clinic recliner chair after a treatment that was supposed to help me.  Why did the nurse wait to answer the call light when I finally figured out what I needed to do?

treatment, recliner, hospital, bark a lounger, adjustable, IV infusion

I couldn’t speak properly but had to go to the bathroom greatly, knowing it would require transport via wheelchair and considerable physical assistance.  Why do I have to risk the episode worsening as I attempt to blurt it all out and even help operate the dang chair?

My left arm and leg were too weak and unstable as they seized with the rest of me so pivoting on a leg opposite the grab bar was the only way to land on the toilet dontcha know?  Why do I have to keep repeating that initiation of speech or movement makes the convulsions worse then be forced in a situation to have to do both anyways?

Each jolt repeated hundreds of times that night made the headache spike while wrenching my neck, spine, low back but alas I could do nothing to stop it or change its course.  Why did not voiding alleviate the symptoms like it had so many times before?

The infusions of fluids were supposed to help me treat the dysautonomia they said and address the dehydration but instead pushed me deeper into an exacerbation of my worst symptoms.  Why did not both doctors return my calls about my care that week, that day?

My beloved rescued me, drove me home, and helped me start the decontamination procedures to minimize the influence of exposures that could make the episode persist.  I feared falling in the shower after mumbling that I thought I could do it myself after he left.  Why do these heartaches keep happening to us?

I am still so very sick a year post IV antibiotics, genetic coaching, IV and compounded nutritional treatments, testing and treatments beyond that most experts would ever comprehend.  Why am I still at this level of strife FIVE YEARS down the road with no money for a big new direction, a possible cure?

The symptoms concerning me most recently are the ones where my cognition becomes dulled.  Why . . .  How in the world will we figure this out if my mind goes dim now?

I place this need to know “why” at the foot of my Lord’s cross who crafted this journey for me and my beloved for this time in our lives.  Thank you Jesus for Steve’s love.  I surrender my questions, my suffering, the thorns in my flesh, and the weakening of my mind to Your mighty hand with trust o’ God of the universe Who reigns!  Whether the battle is in the heavenlies or in my heart, my flesh, I let it all go to you now and ask for your covering my Jesus Christ.

God’s Word captures the submission of Job to the Lord in His time of suffering:

25 I know that my redeemer lives,
    and that in the end he will stand on the earth.
26 And after my skin has been destroyed,
    yet in my flesh I will see God;
27 I myself will see him
    with my own eyes—I, and not another. (Job 19)

“I know that you can do all things;
    no purpose of yours can be thwarted.
You asked, ‘Who is this that obscures my plans without knowledge?’
    Surely I spoke of things I did not understand,
    things too wonderful for me to know.

“You said, ‘Listen now, and I will speak;
    I will question you,
    and you shall answer me.’
My ears had heard of you
    but now my eyes have seen you.
Therefore I despise myself
    and repent in dust and ashes.” (Job 42)

Me too.  I trust that You always see me.  I will trust in you.  JJ