Coming out of shock

Quite disturbing is the realization that the consequence of serious illness

Adds damage from its own dynamics, worsening symptoms to a hellish level.

Hours of convulsive episodes reveal failed treatments intended to cure

Instead I have whiplash and the trial of convincing my Doc to test me some more.

Fortunately for me, he was willing to throw the book at me, inside and out

Not so good for my hubby who held me as I hung from his arms for my chiropractic care.

Gotta hand it to my Doc for making it all work when I could not stand

Both of them enduring the gutteral eruptions of screams when my brain is afire, nonetheless.

We all got through it, me with zero sleep from the night before

Grateful for the comfort from a local burger joint to restore our famished bodies, minds.

Oh to have respite from this waking nightmare whose root-cause is still mysterious

It’s the kind of Groundhog Day that repeats until you finally get it or maybe not.

Someday maybe . . . Lord willing. JJ

I didn’t get the message

Ever wonder what the outcome might have been if we had been just a moment earlier or perhaps later at a given moment in time? When you just missed the ice cream truck as a kid or perhaps as an adult, a former lover narrowly escapes your intrusion on his moment of indiscretion? What about that moment of sickness that you managed to hide from the critical eye of a relative or that time you arrived at the grocery store only to find one box of your favorite cereal left on the shelf instead of two? Perhaps I didn’t get the message or the Divine nudge . . . or maybe I just ignored it and I am the better for it in the end. Such my rationalization goes.

Then there’s the time when the message never seems to come at all. You get the first part of some saucy news but never the rest of the story and you are left hanging in disbelief, doubt, dread, or worse. Is my severely disabled brother going to be o.k. or not? Will someone paleeeeese return my phone calls? When will I find out the results of a biopsy procedure for crying out loud? I want answers NOW!!! Perhaps the Lord ordains that a little more time is needed so I simply have to slog out the wait. Such is one of the hardest tasks in a life still structured by time, not yet unstructured by eternity. As believers in Jesus Christ, we’re still here in our constraints of time and space. The waiting we must do is necessary yet really hard sometimes.

The weeks when prayers seem to go unanswered, no direction comes after hours spent pleading on our knees, events come forth in puzzling sequences that confound the issues at hand, you never really figure out what the heck was going on or the purpose of it all in the end. Such are the mysteries of living a life in the slow lane and especially of a person battling chronic illness day after day after day. It’s really hard to believe that what you see is all that you might get out of your broken life. Alas we always hope for something more than we have don’t we?

I just didn’t get the message that there would come a point at which things would not get better for me. Blessings abound around me but my health has not improved; it has deteriorated. Every few months has brought serious new problems that threaten to choke the life out of me. My wiggle room has gotten smaller. Forget rebounding to a prior level of functioning. It just isn’t happening for me right now. So yes, I am really down in the dumps tonight. I have been up all night for the second night in a row with a daytime of sleeping to follow. The unseasonably warm and sunny day out there in the Midwest will be enjoyed by folks other than myself as the tic attacks wreak havoc on my sleep/wake cycles once again. Wasn’t I getting better a year ago around this time? Didn’t I have the best spring last year of the prior 8 years? What has happened?

TO BE CONTINUED . . .

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?

More arrows pointing at a target

Seems like there are more arrows pointing at the same target this time, but will the archer get it right? You know, the one in the white coat with the big degrees, fancy knowledge, and ticking watch?

doctor, stethoscope, diagnosis, pancreatic cyst, EUS, endoscopy ultrasound, insulinoma

Too bad that it was me and not one of them that pointed out that the pancreatic cyst mentioned on the CT report still needed some kind of follow-up! But maybe it’s alright that things happened in the order in which they did? At least my 32 year relationship with thyroid medication has ended and removed one more factor in an equally puzzling dance with hypoglycemia.

Peripheral neuropathy, heart disease, hypoglycemia, insulin resistance, pain, nausea, and a pancreatic cyst were all written down but no one put them together in the same story until I brought the report to my Doctor on September 11th. Let’s add daily seizure attacks for 7 1/2 years shall we? You know, the ones that we recently discovered can go away sometimes with a blast of sugar? The glucose monitor doesn’t scream answers yet as to why this occurs and how to manage it, try as I do, but some other labs are finally leaving clues.

An MRI and MRCP are behind me and an endoscopy ultrasound (EUS) shall commence but not a 72-hour fasting blood test (used to diagnose a particular type of pancreatic mass associated with hypoglycemia). Oh well. We opted for the local specialist to evaluate me but he only does the former test not the latter. I just hope it wasn’t a mistake NOT to return to the Mayo Clinic and the Pancreatic Clinic this past week. Travelling there is a big deal and trying to get home after procedures is a bear dontcha know.

I’ll try not to ruminate about the potential for pancreatic cancer and hope that this miraculous little finding is ordained by God for a time such as this, to point the new “archer” to a cure for my worst symptom. Who knew that these days when you have hypoglycemia they look for a cause? Decades ago the medical folks just had me eat small meals of particular food combinations; “it may or may not turn into diabetes someday” they said. Similarly I have seen just this year how medical treatment protocols change! Yes, thyroid nodules have not been treated with medication since the protocol changed in 1986! The researcher of that study turned out to be my endocrinologist at Mayo Clinic in March, starting me out on a plan of action that ultimately calmed my fried nerves, weakening bones!

Keep your eye on the ball I keep telling myself. One step at a time: live around the nausea, pain, and increasingly unpredictable convulsive episodes. Figure out what to eat. Cancel plans with your husband and stay home where it’s safe. Yuck! Venture out when you can regardless of how you feel. Keep up with the IV fluids every 2 weeks and take 2 cherries before bed in case the sugar spike prevents the episodes that meet you there every night. Then try to sleep knowing that the tempest beast who has ravaged your neck and back and head thousands of times before is lurking before you fitfully pass out by morning . . .

This hell. The joy is gone. And yet as I have stated to myself before in the words of Moody Church pastor Erwin Luitzer, “when going through hell, don’t stop.” Count your blessings including some new ones here at home; embrace your beloved hubby dear who loves you so. Dwell in the presence of your Savior. Reach out to friends in Christ. Talk to Jesus . . . He is here right now, back there, and out there too.

Twelve more days will have passed and chemically-induced rest for the EUS will be here soon enough. You got this! JJ

The art of waiting

I should probably have gotten this together by now

But I have not. No I haven’t. I do try alright.

I’m just not that good at waiting.

Nearly sick with worry, I got the MRI results that confirmed

The CT scans I’d already had times two this year

But it almost didn’t happen; I’m still not right.

If there’s one thing I’ve learned it’s how to navigate

The healthcare system from the inside and out

This skill has helped some in this scenario.

The more important skill alas is not a skill at all:

The one that rests in the wings of my Father

And simply dwells, dwells, dwells.

Gratefully too, there are many bottles lying around

Such that when a flare results from dining out

I can deal with it within a couple of hours!

This is really hard, Gentle Reader. Some big decisions definitely loom

The horizon goes so many different ways at distances unknown

Testing everything we’ve done to date to get me well.

So just like when my beloved prepares to take to the skies

We’ll pre-flight the treatment and file some kind of plan

With prayer even if it takes all night.

The large bird of prey knows her strengths, she soars

But even she must stop to rebuild, to prepare

For the journey is open-ended alright.

Some labs decline diabetes while others bring suspicion alright

Of a serious disease, the kind that can kill you

If you don’t get it right.

At least the cyst appears compartmentalized and operable

To remove it seems the right thing to me

The scope to come is the first step.

No, I’m not ready to wrote prose yet, my thoughts too fragmented

Just know that I don’t want to die should it be a dreaded cancer

There’s more living to do just like our date last night.

Thank you Steve.