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.

JJ Update

Bed bound, all of this beautiful day today.
Food is often triggering convulsive episodes so we are examining blood sugar issues with diet refinements and testing.
Had to take a steroid today to stop episodes; bad for me due to osteoporosis.
Having MRI workup in 6 days of a pancreatic cyst. It was identified 9 MONTHS AGO AND LOST IN THE FOLLOW-UP when diagnosed with hiatal hernia at that time. I found it when filing some of my medical records.
Nausea is lower after stopping a supplement that was reducing the episodes. Hard to choose between blood sugar stabilization with an unexpected side benefit of reducing episodes (with Biocidin) and the nausea it magnified. I went for less nausea hoping to figure out interim strategies to address blood sugar.
Waiting to be scheduled with an interventional gastroenterology specialist who happens to be the director of a large hospital cancer center here. One of the best in the Midwest.
Probably looking at an endoscopy ultrasound procedure thereafter; lab workup has started.
Hungry again . . . Afraid to eat.
Have volunteer responsibilities now and concerned about meeting them.

Please pray. This could be a new course of care that leads to a cure for my worst symptom. Or cancer. Holy cow! Having severe spiritual attacks.

Leaning on the Lord . . . Pic is from a better day 2 weeks ago. Our God reigns! And Yay God for that sweet evening with my hero, Steve!

Peomenade Park, Fort Wayne, IN
September 2, 2019

New Year, New Direction

Like many times before in January these past 7 years, I am seeking a new direction for my medical care as a serious illness continues. A recent autoimmune blood test found antibodies for a particular type of central nervous system disease. So of course we are off now pursuing the next big thing! Here’s an initial brain dump on the subject (absolutely no pun intended!).

Autoimmune disease (AD) is a disease in which the body’s immune system attacks healthy cells. There are up to 100 different types of AD (depending upon which resource you use) and 3 triggers that I can discern that initiate the onset of symptoms:

  • Gene expression that gets turned on. This is where your have genetic markers for a particular condition coming from somewhere in your family tree that starts to express itself as active disease when triggered by stress, infection, toxicity, or some traumatic event.
  • Infection by bacteria, fungus, or viral agents. This appears to apply when the infection is severe or chronic.
  • Cancer. This may be a chicken-or-egg type of dynamic where a patient may never know what came first.

Docs have diagnosed me with a few conditions in the past that may be considered autoimmune disease. But it wasn’t until my Doc finally decided to start testing me for AD antibodies (Cyrex Array #7) that something concrete was identified and it is serious. The condition mimics a neurological disease that my Father had. The biotoxin illness that triggered my 7 years of chronic illness (beginning the same year in which he passed away, interestingly) and subsequent infections may also contribute to my situation. Thankfully, no cancer has been identified so we will stick with the first 2 triggers as entering me into the AD phase of my long term treatment plan.

So I started researching as usual and discovered two primary approaches to neurological disease in general: 1) manage the symptoms of a debilitating, degenerating course, or 2) treat it with immunotherapy and medications that have the potential to reverse its course when there is an AD component. My Doc suggested continuing various supplements and physical therapy. A second Functional Medicine Doc suggested a “functional medicine chiropractor” and a neurologist who specializes in Parkinson’s Disease. Of course I will consider these but I am also not going to wait around while my body deteriorates without seeking something more substantial! Fortunately it appears that for me, there may be medical treatment options including what is called IVIg that have the potential to REVERSE THE EPISODES THAT APPEAR SEIZURE-LIKE, VIRTUALLY EVERY DAY FOR NEARLY 7 YEARS!  Yes, let’s do that!

Yesterday I set up an account and submitted a brief case history for review by the Autoimmune Clinic at the Mayo Clinic in Rochester, Minnesota. Their neurologists specialize in neuroimmunology, participate in the latest research, and are willing to initiate trials of immunotherapies and medications to help their patients. I had contacted a couple of researchers directly, consulted the leader of a regional support group, watched lectures and interviews, and reviewed the literature on the factors relevant to my case. “Time is brain” and “time is cerebellum” appeared several times in the studies, suggesting not waiting around for something to happen. Overall, this field of study is very complex; I believe that I understand the main principles enough to share with my beloved Stevers and, as one accord, proceed in this new direction in my medical care.

As with anything new and complicated, there are many unknowns ahead of us. Will the neurologists accept my case and when will I be able to schedule my consultation, testing, treatment? How much, if any, will my insurance cover? How will I tolerate a lumbar puncture procedure likely needed for comprehensive diagnostic work-up even if administered under anesthesia? Will we be able to pay for the travel and out-of-pocket expenses that, for immunotherapy, could exceed tens of thousands of dollars? Can any of the treatment, if indicated, be completed locally and how many times will I need to return to Mayo Clinic (a full day of driving away from home)? In the winter when it’s too cold to camp, will I be able to tolerate staying in a hotel often laden with fragrances that trigger convulsive episodes? Will our aging and endearing pup Elle be able to travel and stay with us?

You know we are praying about all of these questions already! I am a bit frightened by the diagnosis I have been given, having worked with persons with movement disorders during my career as an Occupational Therapist. Yet I am also in awe that this information came NOW and not 3 years ago when I first considered a consultation at Mayo Clinic. We have learned so much since then, ruled out other conditions that don’t apply to me, treated conditions that put me in a better position to benefit from an Autoimmune Clinic, confirmed that this illness is not psychiatric, and know the process of travelling for medical care (as in my craniomandibular specialist whose care continues).

I feel like the expression on Elle’s face in this picture. Three paws in view and one paw under the rug with the unknowns lurking underneath there as well. Will there be Rubber Duckies or sweetness from the Lord to lighten this journey? Surely. Each phase of this time in my life has brought blessing with the hardships. Besides, you know I love road trips with Steve! And Elle!

Hang tight Gentle Reader. We may be headed north really soon! JJ

A Tender Place

Hellebores, hybrid, tender, lenten rose, blog, poetry, prose, Winter, early Spring

So if the Lenten rose can bloom amidst the snow

Yet if I not carry forth my joy past the continuing rain

Does that make me a bad person, my beloved, my dear?

He told his tale with passion once and again and again

Yet I have not seen the same victory these many years

Does that make me ungrateful before my Savior, my King?

To celebrate this one’s renewed life, ’twas hard-won indeed

Doth makes me part of this man’s humanity in Christ

Yes, takes little, no none from my own pool of goodness . . .

And yet I cried and pushed myself away, away for a time

Lest my tears steal more than the punch line to come,

Dost my ingrace keep me from moving forward one day?

Aye this is a tender place whereat I have landed

Not bad, non-indifferent, full of meaning that I like

Where life meets the road upon which it travels and perceives.

My Lord knows this woe:  He cried for the sorrows we do endure

Then gave the breath from His very lips so that we may live,

Be free of it all at last, the strife, every bit, you and I both.

For we two understand what it means to face death

To fear the life places that would ignite some others to thrive

But it took a tragedy beyond belief to get us moving right.

We may have wrestled then let go as our Redeemer carried us along

Finding one day that peace hath returned:  covering the tenderness

Becoming the places that defined us whilst ending the story done well.

[My hope is that I am in one of them right now, Gentle Reader.]  JJ

When it’s too dangerous: a treatment update

Killing bad bugs is serious business.  Who knows. Maybe even cancer will someday be treated the same way we go after Lyme Disease.  At least some of the fibromyalgia and multiple sclerosis approaches are starting to lean in the direction of causation by bacterial infection, parasites, and fungi.

But not all approaches are worthy of pursuit.  Most of you reading this blog know of the struggle I’ve experienced trying to eradicate Lyme Disease and some Co-Infections.  I’ve tried a variety of treatment approaches these past 1 1/2 years after extensive research, networking, and good ol’ trial and error.  Although 1 1/2 years is not a long time for the treatment of Chronic or even Late Stage Lyme Disease, I must say that I have learned a lot already!  Sadly, we are going backwards financially trying to find the best course of action.  And now an important truth became clear to me and my husband this evening from a Biblical principle:

23 “I have the right to do anything,” you say—but not everything is beneficial. “I have the right to do anything”—but not everything is constructive.  1 Cor 10:23

We have discovered that my most recent treatment approach is just too dangerous for me at its current intensity.  I will need to back off on the dosage of the new antibiotic regime to keep from damaging my body.  The seizure attacks of the last 36 hours, while not new to me, might even kill me if we were to continue this course.  To kill off Bartonella (a co-infection of Lyme) is considered by some, the hardest co-infection of them all.  This bacteria adapts as it escapes further into one’s tissues when in the presence of antibiotics and other approaches, making it both a super bug and a smart bug.  Unfortunately, it might be the cause of my chronic urinary tract infection and maybe even the seizure attacks.  My, my this complicates things!

We have decided to proceed with a slower yet persistent plan of attack.  The Rife machine will be on hold for awhile due to my increased sensitivity to electromagnetic frequencies when feeling sicker.  “Game on” is still our approach and we’ll take all the time outs, plays in the playbook, and “fighting Irish” I can muster to win this thing.  Steve will be home this weekend with me for my safety as we transition my care.  I’ve gotten weaker this past week and that is not good.

It is good, however, that we have hope and are one accord with the next steps.  I’ll continue on the protein/oil/vegetable diet to attempt to keep Candida down and replenish my gut flora; pushing fluids and probiotics will be critical as well.  I was dreadfully sick 1 1/2 years ago when I started on a rotation of a few antibiotics and had to stop.  Rife treatments and a host of supplements, tinctures, compounded prescriptions and Epsom salt baths followed.  At least now I think I will be able to tolerate a daily low dose of antibiotics:  the proven track record of care by the International Lyme and Associated Disease Society.  I will also continue with the mold illness treatments of which I have written previously:  VIP and Losartan.

Some things just take time I guess.  Another encouraging note:  after the wretched episodes, my mind is significantly clearer.  The improvement mimics my status pre-illness from when I contracted viral hepatitis 2 years ago.  Perhaps we are finally on to an answer after all?  Who knows.  I’ve had my hopes dashed before many times.  That’s o.k.  For tonight, or rather this morning, there’s a real indication that something is improving!

Have I mentioned how wonderful my husband Steve has been through this whole ordeal?  I am grateful for his unfailing love and tenderness that has never wavered despite the trials we have endured.  Thank you Jesus.  We are leaning on you and thank you for walking with us these days as well.

And thank you too, Gentle Reader.  :J