Bouncing back, bouncing all around

It’s a good thing that the Lord is great and consistent every single moment of every single day, keeping our best good in mind when we are bouncing around a bit in life. Yesterday was a day with two of those hits for me.

I recently described a dilemma I had with a new treatment direction as I trend overall toward recovery from a serious illness. I am grateful for some better days and many more better moments than most of the past 7 1/2 years. I’ve barely grasped the significance of all of the changes let alone managed the new patterns of illness/recovery/illness and so on. The following 2 pictures from my early “birthday celebration” depict this very well I think.

9:00 a.m. after my alarm went off, back to bed then after the tail end of an unexpected/long tic attack episode, and needing to eat before taking PRN medication. I can’t control my left arm and struggle to feed myself, manage dental appliances with assistance.
4:30 p.m. celebrating at the Chit Chat Tour of social media stars Diamond and Silk before dinner along the riverfront.
JW Marriott, Grand Rapids, MI

With the blessing of an incredible local endocrinologist (that I miraculously got to see in record timing) I am free to make my own changes with new medications (this time covered by insurance, yay!). Her intervention has led to both successful and sometimes confusing experimentation. I’ve consulted with a local compounding pharmacist, prayed and landed on a plan that includes returning to mercury detox. Mercury can be sequestered in the tissues of the thyroid. I suspect that Hg is getting stirred up, even dumping as I transition from suppressing the thyroid: Docs prescribed high doses of meds for decades but an Endo at the Mayo Clinic recommends drastically titrating them down. I can’t seem to go fast or slow enough to cope with the outcomes each day. Hg as a mitigating factor seems the only plausible explanation to me right now given that I was doing so well initially then the seizure attack episodes returned. And mercury binders, minerals affecting the thyroid inversely affect the pattern of episodes. Mercury showed up again in recent blood work . . . Gratefully I have the best tools around now for both of these avenues.

I felt really beat up and exhausted as we left the house later today yet rallied for the cause of celebrating my upcoming birthday none the less. The tickets were already purchased for a show that is a long car ride away from home and my beloved Steve would be doing all of the driving as usual. It was a good decision to go. I had a really nice time with Steve. Then I took my Hg binder supps too close to bedtime and have been awake all night. Well crapolaski! (That’s Polish, of course.) This time at least I was able to get some correspondence done as the night broke into day. Crying and weeping really take the life out of you for a time, then joy comes in the mourning.

But social media stars Diamond and Silk are exactly the rescue remedy that I needed today. They are a hoot! Don’t follow this link if you aren’t open to other political viewpoints in our hotbed of political correctness in the United States these days. These sisters are polarizing! Kind of refreshing for me: a gal who has chosen to be transparent with the real ups and downs of overcoming a serious illness. The straight scoop is just alright with me. “Don’t sugar-coat it baby! That’s right!” And so is the Word from Lord, Jesus Christ, that sees me through it all. I hope He will do the same for you Gentle Reader. Have you trusted in Him no matter what? JJ


And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.


1 Peter 5:10

Twas the morn of endo

Twas the morning of endo

And all through the house

Not a creature was stirring

Not even a louse.

The kind buried deep inside

The caverns of thy bowel

Who knows what’s it’s name

To be extricated via trowel.

I digress to my gardening

Terms instead of “incision”

For to bear more pain, discomfort

Is not something I can envision.

So to sleep, aye to dream

Via chemistry or exhaustion lo

We soon will have answers

Perhaps by time of ho, ho, ho!

Will this be a blessing

In disguise as gone before

Suffering giving birth to hope

We shall pray as inside goes the scope.

For H. Pylori messes the axis

Of the gut with the brain

And causes problems like mine:

Seizures on top of stomach pain.

Could this be the work of the Lord,

The prayers at once coming true?

Oh heck at least the deep snooze

Will be sweet on this Tues.

It’s just not the same thing

good, bad, perspective, Christian, surrender, letting go, in Christ

Dinner out with family celebrating from 3 states or an Asian wrap alone at the messy table where you finally were allowed to finish your holiday activities with some kids . . .

A rental car authorized by your insurance company while the truck gets repaired from the deer or a silver beast machine that at least doesn’t reek like a fleabag hotel . . .

An upset stomach that lingered for weeks or a working diagnosis of a peptic ulcer that reveals that the stress was more than just a little of late . . .

A cold sore that just happens from time to time or a flare of wretched shingles caught in the beginning stages, THANK GOD . . .

The stuff of life making a rough landing all at the same time or a financial train wreck in the making as Christmas gift-giving rapidly approaches . . .

Tears of frustration from “not good enough” criticism in a new editing role giving way to compliments from out of no where just 3 months later . . .

Doubts of your acceptance in community volunteer roles with new folks who don’t know your history to appreciation for being part of the team . . .

Missing my husband dearly as he is away travelling to the non-starter reunion when having to practice extreme mold avoidance still . . .

Tears of grief from so very much loss shaking my fragile frame to the bone to a slow recovery days later with a few convulsive spikes here and there . . .

Powerlessness to minister to my brother who suffers post-stroke much greater than I to finally figuring out something I can send him to really help . . .

I really could go on.  It’s just not the same thing when things really do go from bad to worse and you wish you had not feared for the worst because things can really go either way . . . and sometimes they actually go better than expected.  It’s all a matter of perspective in the end, right?  Ugh.  Clearly I am witnessing both phenomenon.  Really makes for uncertain living, I tell ya.

So what shall I do?  To stay in the moment as best I can is what I shall do.  Nap when I can’t concentrate anymore.  Pet the pup for more than a moment ’cause she likes it too.  Do something nice for my beloved Steve.  Move my Bible to that more secluded spot where I can spend time with the Lord without as many distractions.  Dwell and pray, pray and dwell in the presence of my Heavenly Father Who can lift my spirits above that which troubles me each day.  I have given myself over to worldly worries and it is not the same thing as giving it all over to Him.  I surrender.  I don’t know what got broken that I landed here but at least this one I do know how to fix.  Lord willing, things will get better!  JJ

A Well Worn Path

If you travel the same way and expect different results they say it is the definition of insanity.  I get that so I resist the same.

If your baseline shifts and you take the same precautions against a disastrous outcome, you might say you are taking a chance that you might get different results.  I usually control the factors I can and go with the new direction . . . when amnesia sets in from the last failed effort and something new looks promising.

If you smash into a devastating blow anyways and have to retreat to combat the devastation, you might say that you were more rolling the dice than making a reasonable plan for success.

If you add too many factors in any plan, precaution, retreat and come up against a surprise attack from an unforeseen foe then you won’t know what hit either one of you until the smoke clears along with your heads.  Me:  hours of violent convulsive episodes and the aftermath.  Him:  heartache, exhaustion, and no peace.

And if you are me in the latter years of battling a complex illness, you live in shock from the blows of what hit you in the last 24 hours when it is after 6 days of relatively few symptoms.  The new treatments did look promising.  They did not hold off the onslaught, however.  And you paid one of the highest prices once again this side of heaven.

And if you are the beloved husband trying to navigate these landmines, help fight the war while carrying on with the normal and fun activities of life . . . you will have to watch the horror of your beloved get tortured on the battlefield.  You try.  Success is elusive or temporary.  You fail.  Again you grieve and so does she.

And if this well-worn path brings despair then so be it.  Tomorrow is still another day.  As for me, I’m still here and so is my beloved.  Most importantly, I know that my Lord sees my waterfall of tears lain at His throne of grace.  Life will go on somehow as it always does; I have more responsibilities now.  The despair will give way to some sort of hope in due time; the Lord will add His grace and strength to see me and my beloved through once again.

For today, I am like a beaten puppy on this well worn path of life.  It is tough stuff indeed.

Dang!  JJ

Stuck in the middle with you

My beloved is most gracious, loving, and kind to me

For these I am grateful.

My ventures out into community work were wrought with struggle then success

For some good results I am humbled.

My convulsive episodes have lessened then spiked on occasion, giving more clues than questions of late

For this I am, alas, perplexed.

My  labs raise questions about new things that need attention more than providing answers about a cause, per se, oh my

For the discouragement I will turn a cheek and trust my Lord, the Yahweh.

My distant family faces tragedy so we love on those who have come nearer for a time

For them we will simply give our love, again and again.

My life sprints and spurts in a race against time, energy, resources, wisdom, and fatigue

For the long naps this past week I shall be grateful.

My most prized moments are those stuck in the middle of all with you my dearest love

For your tender arms bring Jesus with skin on:  tis a really good thing, being here with you, even now.

My life would matter less if not witnessed, not shared by one who cares for me so and me for him

For such a time as this, you are the most incredible gift.  I love you Steve.  Thank you.

JJ