That was quick!

If we ever get the answers to the questions why, why me, or why not then we will truly have arrived in a place of peace. Will it ever be this side of heaven?

This side of heaven, life moves quite quickly. The agonizing wait for a package to arrive, bringing the compounded, whizbang elizir to remedy some malady, can be mind-numbing. It’s all you can think about. Then before you know it, you are opening the package and quickly moving on with the other tasks of the day. If only this would apply to a workup to rule out cancer . . .

My days are blurry now yet not without a moment of reflection: largely on how the year we just finished has actually prepared me for the lump that is on my plate right now. Or more accurately, 7 lumps. Ruling out autoimmune disease, being diagnosed with hyperthyroidism then switching back to hypothyroidism, placating the diagnosis of Functional Movement Disorder, ruling out hyperparathyroidism, and narrowly escaping a diagnosis of pancreatic cancer with surveillance puts 2019 on the map for me, so to speak. Every step of the way, my main concern was beyond the testing and treatments glaring on the surface; I was asking if this or that could be a cause of the more important strife in my life: daily convulsive episodes, my worst symptom.

Autoimmunie disease = Episodic Ataxia? Nope.

Hyperthyroidism = Seizure disorder of organic origin? Nope.

Functional Movement Disorder = Rehabilitation to resolve? Nope.

Hyperparathyroidism = calcium trafficking issues? Nope.

Pancreatic mass = insulinoma and blood sugar dysregulation that triggers seizures? Nope.

WTF is it then? Excuse my French and excessive use of metaphors. I am about to go mad and cannot use direct language anymore. How many near-misses can there be? The answer: at least one more.

A thyroid ultrasound just 8 months after one earlier in 2019 found SIX NEW NODULES with suspicious characteristics. Then there’s the hard one in my neck that didn’t go away with the common cold after Christmas. How can this be? Labs don’t lie but they certainly don’t explain this new, worrisome finding. It’s all I can do right now to keep from screaming while I research the good, bad, and ugly possibilities. Looks like at the very least, another Fine Needle Aspiration is indicated and will be completed under conscious sedation due to the seizure attacks that come with needle sticks. My only saving grace in this hot mess is that at least I don’t need to be awake this time when someone in a white coat puts a very long needle in my neck. UBER-EWWWWWWWW!

Someday to preserve the remainder of my sanity, I will list all the treatments, dietary habits, rehabilitation strategies, lifestyle changes, mold avoidance, and medical management that I do because some professional said it would help me. The list is burdensome. And expensive. But nothing compares to this. I have never had major surgery before let alone a bonified diagnosis of cancer. My heart races with the potential implications, my mind numbs the rest of the way after pressing on to complete some volunteer work on the computer, and of course I am hungry . . . again! If only I had taken that walk with the pup when she was whining so loudly this afternoon. I really should have, even in the freezing temps looming out the front door.

I talk to the Lord all the time now. It’s like breathing a prayer all day long. He’s here with me alone at this computer, this I know. Graciously, my beloved is more tender and sweet of late than any day prior in this almost 9 years of battling serious illness. I am so glad for Steve. Life’s skirmishes over here are about to escalate to battle and war. We both can feel it with the data on the ultrasound reports.

My, how quickly things changed. But like Barry Manilow once sang, could this be the magic at last?

When the adventure is inherent in the day

No fancy definition needed

When the adventure is inherent in the day.

Not exactly a mountain top experience

Or reaching the limits of form and space.

Nor costly in the typical sense of words

For no one wants to spend thousands on health.

Nothing like it in the normal world

But for me it’s no, not, nor, nothing then let’s go anyways.

The effort to live with serious illness

Even when the trials are less to write about

Are no smaller challenge, adventure shall we say

Because you really don’t know the outcome when you head out the door.

There may be pictures (scans), adrenaline rushes (injections) oh my,

Better hold on sissies, cause there ain’t no manual when you decide to try.

And try I have, a thousand times over

To some avail with microscopic progress, not perfection by any means.

Today was no exception as my head swum with radioactive tracer

Driving down the road hungrier, less self-assured, ready to make it anyways.

So what’s in your adventure portal?

The one with an open-ended plan

Make room for the derailments of this life

‘Cause nothin’ better than that Gentle Ones. ‘K Lord, let’s go!

Five days to Launch

So tired and not fully stabilized yet

The road to Mayo warms before me, this trip by air

Oh that I could know I would be alright

When setbacks still haunt me albeit less than before.

Tis time to test this new me

And finish the work begun in winter

Much progress has come after 7 years in hellish places

Doubts covered by gratitude for our good God.

For never have I had this much change

In 2 short months before

Drastic changes in medication gave way

To no mo drugs after quite a struggle to get free.

My Jesus led me to figure it out

As my mind cleared from the fog of serious illness

The work of repair hath begun

With maybe a little fun in the mix too

Visiting the star of the North, Minnesota!

For isn’t it just like my Lord and Savior

Right after celebrating His glorious day

That I should have one of sorts too

A right of passage, a launch, so come what may! JJ

The grand entrance to the famous Mayo Clinic

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