Smaller Moments Mean More

When the mist on the pond lifts up to the air

The morning hath come and I give witness to life once again.

For I am up through the night, my old haunts hath returned

A way of coping, of living:  just what I gotta do for right now.

So I edit a magazine, make charts of treatments, plan for when I will be well,

Most folks would not notice the shifts ever so small

The wretched episodes continue albeit with shaking, less overall.

I had to gain courage to take more meds/more remedies than ever before

Go rogue to kill the monsters within with faith and every tool from this road.

“Parasites in the brain” sounds pretty scary might you agree?

Yet that is exactly where I have arrived so be that as it may

Find me spacey perchance to dream when restorative sleep comes that way.

The smaller treats of life mean more to me now in my softened state

I get to see them in slow motion and savior their texture, their smell even when awful like glue.

What is before me fills every moment in much more detail

Healing comes small before big so intentionally I walk through most of the day.

Don’t get me wrong, the chores fill more hours than they used to years ago

That ‘s just one part of the plan so is rest and in times of rest I believe answers we have found.

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One does feel ever so small next to God’s majesty revealed in the big sky over Wyoming . . .

Treatment Update: The Beasts Within

If you follow as many of the various functional medicine forums as I do, you probably have noticed the topic of parasites coming up more often these days.  In fact, there is a free “Parasite Summit” coming up in September.  This topic became a personal one for me within the past month.  Allow me to explain.

A friend and her sister were receiving some complex treatments for serious health issues that they have been battling most of their lives.  Shortly after their focus turned to testing and treatment remedies from outside the United States, my friend suggested I look into parasites as the potential cause of the seizure attacks I have been battling for over 5 years.  I looked into it.  Their provider would not be for me yet the topic launched me into some new research about the time my hubby and I were set to leave on an extended vacation.  Imagine realizing during your first day away from home that you have a new infection that requires attention IMMEDIATELY!  Yeah, well when your bum itches making you crazy insane, ya gotta fix it FAST!

So right before heading out to my River Bear’s kayaking nationals 2 States away, wifey-poo requests hubby-poo stop at a local drug store for an over-the-counter medication.  Thank the Lord he said yes!  My symptoms diminished within hours!  The problem was not a yeast infection but a nasty pinworm/parasite infestation!  How did I get it?  Who knows?!  Pinworms are highly contagious and you can pick them up almost anywhere.  The big shocker was that the seizure attacks virtually disappeared for the next 24 hours after treatment!  I wasn’t expecting that!  No episodes falling asleep or waking up; barely a little tic-zip broke through here or there.  What was going on?

Three weeks have now passed and I have repeated the OTC remedy a couple of times.  I found that clove essential oil with coconut oil provides some topical relief with the added benefit of killing the parasite eggs.  Who knew?  And now my Functional Medicine Doc is testing me a couple of different ways with a couple of different lab tests to see if we can capture all the critters that may be wreaking havoc “down there,” in my body, and brain.  Yes:  in my brain.  Parasites can move to any tissue in the body once they hit the bloodstream or lymphatic system.  My MRI and CT scans have been negative for typical markers that would suggest Central Nervous System involvement, however, allergies to contrast dyes have prevented use of same in diagnosis.  In the end it really doesn’t matter to me if tests show anything or not.  The idea of parasites just makes sense to me.

Simply stated, parasites develop a symbiotic relationship with their human “host.”  They can actually help the body by balancing blood sugars or harboring heavy metals/toxic chemicals (that would be toxic if left to circulate freely).  Parasites are not a good thingy though.  They can also harbor infectious elements (some have suggested Lyme disease bacteria) setting up resistance to treatment, to eradicating the infections.  And I thought it was the cysts and biofilms that were the biggest issues in treatment resistance!  As they continue to live in our bodies, they drain nutrition and mineral resources in addition to creating a host of negative symptoms that mimic a wide range of diseases.  Gut dysbiosis is a big example to which I can relate:  my Doc wonders if parasites are causing my belly pain which has not changed much after two different treatment protocols for Small Intestinal Bacterial Overgrowth.  He says that worms/flukes/bugs can favor the right lower quadrant and where the trouble lies for me.

But the Palo Alto Toxoplasmosis Serology Lab testing was negative.  Pinworms don’t typically cause neurological problems.  Stool testing hasn’t found anything in the past even when I put a WORM in the sample cup!  Oy vey!  Maybe these two new tests will yield something useful?  In the meantime, I am taking lots of anti-parasitic herbal formulas with a concoction of binders with gratitude that neither trigger seizure episodes as they have in the past.  Lord willing, I am going to get well!  Indeed there are parts of days where I feel some positive changes for the better as a result of these additions to my care.

If you have followed this blog for awhile then you know I am always looking for answers, for hope.  I do hope to get well and am working every day towards that goal.  Overriding everything however is this guiding principle:  that my true hope is in my Lord and Savior Jesus Christ who will one day make me whole, here with you or when we meet in heaven.  Nothing will change that.  He is gracious and good to me even on my worst of days.  I am so humbled to feel His presence on my bed of sickness as well as the moments where I can have a little fun here and there.  Speaking of fun, did I tell you about white water rafting 2 weeks ago?  Yeah, you heard me!

Stay tuned Gentle Reader.  Pictures and more stories to follow that will blow your socks off . . . or at least get them a little cold and wet!  The Snake River is about 60 degrees even in August dontcha know!  More on that one next time.  Gotta take some stuff and get to bed.

Take care, JJ

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Snake River, Jackson Hole, Wyoming

 

Treatment Update

Time for a treatment update and some good news!  Yes, things aren’t as bad.  🙂

My major focus with my health since I started this blog has always been to stop the residual, daily convulsive episodes that have plagued me for over 5 years.  More recently my treatment plan has centered around treating a gut infection that appears to be related.  Some call it Small Intestinal Bacterial Overgrowth (SIBO) and specifically for me it might be due to a clostridia species infection.  Regardless, the gut-brain connection is real and affects neurotransmitters in the brain.  A myriad of neurological issues can result when these chemicals are deficient or out of balance.  Specific medications and nutritional supports directed by a functional medicine doctor in the past nor my genetic coach/naturopathic physician more recently seemed promising but did not help.  Over the past 5 1/2 years, my medical doctor and I have also addressed or ruled out a plethora of other avenues (biotoxin illness, Lyme disease, mercury and lead toxicity, nutritional deficiencies, dental factors, epigenetic expression, pain/structural complications, the endocannibinoid system with CBD oil, psychological issues, ruling out brain or cardiac anomalies, sleep issues, etc.).  But what about the dull ache in my tummy?

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I did an experiment with a hand held far infrared (FIR) device designed to treat pain.  I used to sell the KenkoWave when I was an Independent Wellness Consultant for a Japanese health technologies company called NIKKEN.  Pain in the right lower quadrant of my abdomen has persisted for over a year.  A comprehensive medical workup yielded no clues so I decided to shine the FIR light onto my tummy.  After just 2 minutes, I had a 2-hour, violent, non-stop convulsive episode that would not respond to any remedy we tried!  I hung on for dear life!  I experimented some more the next couple of days with the same result:  an hour of non-stop episodes after only 60 seconds!  Holy cow!  Maybe the cause is in there somewhere?  By this time I had gotten the results for the THIRD SIBO test coupled with an Organic Acids Test (from Genova Diagnostics and Great Plains Laboratories, respectively) with severe and high markers respectively.  Over the next month, a plan of attack came together.

Somehow treating SIBO last year with an antibiotic (that stays in the gut called Xifaxan) was not enough to solve the problem.  The current round began with about a week of a powerful bio-botanical followed by a nasty antibiotic called Flagyl or Metronidazole.  The drug makes me nauseous so I take another pill for that.  I am not fond of drugs but at this point I will do it if it KILLS THE BEAST!!!  Gratefully, the abdominal pain has already come down.  This leads me to the good news:

  • One-point reduction in the 1-10 pain scale.
  • Less reactivity to noxious stimuli and pain that used to trigger seizure attacks.
  • Shorter episodes that are generally less violent.
  • One less episode most days at my most vulnerable times:  falling asleep or waking up.
  • Clearer thinking for some part of more days.
  • Less stress, fear, sadness, and anxiety.
  • Fewer headaches.
  • Less food sensitivities slightly expanding my food choices.
  • Increased ability to tolerate more supplements prescribed by my doctors per my test results.
  • Ability to work in the garden about once per week.
  • Ability to get to bed before midnight up to 3 nights per week.  (I often stay up late to avoid seizure attacks falling asleep.  Sometimes this has helped in the past.)
  • Movement in a better direction on several laboratory test and scan results.

The changes also appear to have been impacted positively by taking Low Dose Naltrexone.  Persons with autoimmunity diseases and fibromyalgia often use it to reduce a variety of symptoms.  I did not do well on a different dose in the past but I believe the Lord led me to do some research and prompt me to try it again at a lower dose.  This started the list of improvements noted above with the reduction in chronic muscle and joint pain.  Praise the Lord!  Treating the gut infection followed and here we are.

I am encouraged and hope you are as well, Gentle Reader.  Lord willing, I am going to get well!

If you are someone reading this who is struggling with severe illness, please let me know so I may pray for you.  And please don’t give up!  If I can make it through hours per day of head-banging, you can make it through what you are dealing with too.  You are not alone.  Keep trusting in the Lord to see you through each moment, to guide you and comfort you as only He can do so.  He promises to never leave us or forsake us and will always be near if we but call upon our Lord and Savior, Jesus Christ.  He sees us on our bed of sickness.  He hears us.  And one day He will come again in glory for us, taking us to a place where there will be no more suffering or weeping.  He promised!

Thank you for following my journey dear one.  Take care, JJ

 

 

Time to focus

Sick and tired of being the same

I digress into another rant . . . or shall I?

Would that honor the Lord who has sustained

Delivered me from near-death and brought me to you?

Oh if there could just be a happy ending already my dear

Would I still angst over my words or lightly dance over the keys?

These are questions that will not be answered this night or even the next

As my beloved returns home to my side from his travels, refreshed from lack o’ drama.

I must find some joy to carry me out of this funk for the path to recovery is becoming clearer

Glimpses of what may be come through the struggles amuck and late night appointments with my Doctor who works too much.

But is it more than I, just wanting to be well?  I think not for the rewards for victims are slim:  our fellowship better not be tainted by our woes!

Would you and I be friends if it weren’t for our life paths diverted?  Probably not so let’s not spend time there, just trust we were meant to be here now.

And I thank you for carrying me when I could not stand, liking my words when their worth eluded me in the dim of night, listening when most were asleep.

It is time to focus on the prize coming into view:  this possible final leg of the race that will take all my strength as Mr. Herx clears the debris that soured my inner places.

I might just win.  This life season just might end.  Stay tuned, Gentle Reader.  Please pray and I will do the same.  Of course you know me all too well:  I’ll be sure to letcha know…  JJ

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O.B. Panties and an HGTV Hangover

Are you going to love it or list it?  Are you ready to see your fixer upper?  I just don’t think this kitchen is big enough for me!  This will all have to be torn out and redone!

And so goes the thoughts in my head the day after being discharged from the hospital.   Since cable TV was my only steady friend and we don’t have cable TV at home, we got really well acquainted in the past 3 days.  I am convinced now that the wood floors in our home are stunning and that we can stay put for awhile longer.  Wood floors are on-trend these days dontcha know?

I also learned that O.B. elastic panties secure blankets over hospital bedrails really well!   When you are on “Fall Precautions” and have a history of seizures, they pad the bedrails with them.  The only problem is that I am sure that wrapping blankets over metal bed rails hardly meets JCAHO requirements for prevention of injury!  They outta have provided bed pads.  Oh well.  Welcome to the modern hospital complete with a 20+ year old hammock sling for a mattress.  Otherwise, the food filled my belly and care was alright.

I was in the hospital after an urgent trip to the Rapid Care Clinic associated with my doctor’s office sent me there on Sunday.  The Internal Medicine Doc said I could get an evaluation from an Infectious Disease Specialist there (which I was later promised in the ER as well).  That never happened.  What did happen was getting pumped with a plethora of drugs that created nausea for the first day and one-half, exhaustion from side effects and lack of sleep, weight gain from 4,000 cc of fluid and food-snacks-with-every-drug-to-protect-my-tummy, and a lesson in humility.

Regarding the latter, I learned that Nurse Practitioners and Physician’s Assistants run the modern hospital in America these days.  Or at least they do for what happens bedside.  I saw both types of professionals; they got to talk to the Infectious Disease Doc but I did not.  Turns out that my acute case of shingles had been seen before so they treated me “by the book.”  Never mind my history of daily seizures and concern for the brain-swelling complications that can come with the worst cases of shingles:  a disaster potential which could change my life even further, forever.  Thank you Lord that I had called the Ophthalmologist on-call the night before and gotten the treatment needed to protect my eyes from the herpes zoster virus.  It is through the blurry vision of an eye ointment that I chat with you today!  The hospitalists never mentioned protecting my eyes from the spread of this nasty, searingly painful viral infection . . .

So I did my time, got my drugs, stabilized a good part of the intractable pain, and got sent home with:  red lesions and swelling on the right side of my face, a 4th day of constipation, lots of prescriptions for drugs and OTC meds, and a renewed sense of what it means to NOT be in charge of your own life, your own healthcare.  I did get to ask questions and for that I am grateful.  I did receive my Lyme infusions of antibiotics before I left to continue that part of my treatment and for that I am grateful.  I tolerated a peripheral line for 3 days without skin irritation and for that I was amazingly grateful.  I did catch up on HGTV enough to last me a good long while and for that I am grateful.  And I was reasonably able to tolerate a modified, hybrid version of my diet from the hospital menu and for that I am grateful.  I was alone for those 3 days and 2 nights yet my Heavenly Husband was always present and for that I am grateful.

There are two other tidbits to note:  I met a lady while walking the halls who was in the hospital for pneumonia.  She’s a smoker and familiar with Jesus Christ whose birth we celebrate at Christmas.  I shared with her a short testimony of how the Lord appeared to be orchestrating the meds I was given during that hospital stay to possibly treat the serious seizures I have been suffering for 5 years.  Please join me in praying that the person of Jesus Christ would become real for her as well:  as her personal Savior this Christmas.

My second point was hidden in the first noted above.  Did ya catch it?  Yes, I have not had a seizure since coming home from the hospital and had WAAAY FEWER since taking Neurontin in the hospital.  Neurontin is not typically given for Non-epileptic seizure episodes but hey, it is commonly indicated for shingles.  Win-win?  I am hopeful.  What if these 5 years of suffering daily episodes are about to end?  It is too soon to tell how this will proceed going forward yet I am grateful for my little Christmas week reprieve for sure!

Merry Christmas to you, Gentle Reader.  Be sure to check out the Christmas Letter from Steve and me posted today as well.  Even in the dark times there is hope since the Light of the World has come as the person of Jesus Christ.  Oh I do hope that you will share with me in knowing this joy today!

And keep an eye on your panties, eh?  JJ

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