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.

Wyoming, clouds, blog, metaphor, analogy, Chistian, faith, majesty, creation, God, sky, big

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

The Dog Behind the Curtain

Dimly lit, like the medical equipment stored all around me, I sat in the vinyl seat of that cold wheelchair.  My head was unsupported as I writhed this way and that, right leg then left leg shaking uncontrollably.  Breathing was irregular and challenging as I pushed the air out of my chest to start the cycle again then again, gasping every few intervals.  Just my legs were visible from behind the curtain drawn along my right side and lit from light in the hallway.  A passerby might see my exposed knee bouncing up and down from underneath my torn jeans or maybe not.  Who would expect to see a middle-aged woman seizing just beyond a dark veil anyways?

Most likely a dog in a kennel could be positioned in such a fashion!  Perhaps to put her to sleep, to stow her away out of sight, to deal with her later?  Only a mean caregiver would treat an animal in such a way.  Or perhaps a nurse in the outpatient lab of a local hospital?  The latter was my lot this afternoon.  And hours later I grieved the insensitive treatment that I had received (rather had not received).  She never even responded earlier to my light chatter or attempts at humor as she withdrew 10 vials of blood from my scarred veins.  I had to ask her with strained breaths not to wheel me into the waiting room where others would gawk at my strife.  Holy cow.  Aren’t you paid to care for your patients?  You don’t have to care about me personally but HAVE YOU NO HEART?

Most of them have seen me react many times before to medical procedures that trigger anywhere from a couple of moments of shaking to over 2 hours of convulsive episodes and long after the procedure in their outpatient clinic was completed for infusions, injections, blood draws, and port flushes.  Several times other nurses have had to find coverage for their stations or stay late to take me to the bathroom in a wheelchair while my body writhed, gasping for air like a child with cerebral palsy.  Eventually the episode would resolve minutes after voiding in the toilet.

Once I was in the clinic having an infusion of fluids on my birthday and ended up spending the entire evening in the Emergency Room when the seizure attacks would not stop.  That was 2 1/2 years ago.  Twice they have had to call my husband to come and get me or bring me a medication to try and make it stop.  Dozens of times they have just allowed me to sit in a treatment room recovering, long after they had gone home for the night.  A p.m. shift nurse would come in and check on me every 30-60 minutes as I stared at the walls or the mobile T.V. screen in front of my face.  When I could walk again I would move to the lobby for another interval of time until I was stable enough to go home.  No one even noticed I was there.  By the way, they always play my fav HGTV in the Surgical Waiting lobby dontcha know?

This time the aftermath felt like being banished to the broom closet by an abusive grandmother.  I could not reach the call light and no effort was made to make it possible.  I heard the same phlebotomy nurse chatting lightly with the next patient after me who was there for an EEG.  And again with the lady having a blood test.  I guess they were less “complicated” than me.  They probably didn’t remind said nurse of her own seizure episode many years ago that had disrupted her life for 6 months.  (She had told me about that earlier this year while I was sitting in the clinic recovering from an episode triggered by the pain of the needle stick and extraction.)  Yeah maybe that’s it.  Or did she just want to get back to the break area this afternoon and not be bothered by me anymore?

These episodes and experiences create additional trauma for the person enduring a serious, long-term illness.  You come face-to-face with the reality that people just don’t care as much as they should or get tired of caring, even as professional care-givers.  Take more of their time, their effort, their expertise, their personal comfort than they are willing to give and you will struggle making up the difference.  You are pretty close to being on your own.  It is not your fault yet it is your fault.  Suck it up and figure out a way to get home and not kick the dog when you get there.  Almost 3 hours later I felt as beaten down as I could possibly be as I walked out of that place.

A warm fuzzy friend with big brown eyes and wagging tail greeted me at the door when I got home.  She loves me.  I love our Elle.  So at least for me, I will be caring for our dog in a well-lit room with all the comfort measures she needs within a reasonable time of her letting me know that need.  She may not even need to ask me.  I know what she needs.  I care about her and know how to take care of her.  She will not be shunned to a dark corner behind a curtain as others are walking by.  At least unless she is barking wildly at the UPS or FedEx driver, that is.  Into the laundry room alone you will go . . . but just for a moment or two.  She would bite a chunk out of them if I didn’t!

Well Elle, I must say that I know how you feel. Grrrrrrrrrrrrrr.  JJ

woman with dog, German shepherd, travelling, pet, Nissan Frontier, trip, jump seat

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

white water rafting, Snake River, white water, rapids, Class II, Class III, raft,trip, Mad River, living, in the moment, one day at a time, break, chronic illness, fun

Snake River, Jackson Hole, Wyoming

 

Winning through losing

Winning through losing is the title of an article by Pastor Sandy Adams in the Summer 2017 issue of Calvary Chapel Magazine that touched my heart and lightened my burden this day.  Pastor Adams told the story of the Apostle Paul of the Bible who, after coming to faith in Christ, never had a “thorn in his flesh” removed despite praying three times.  He describes it as follows with a passage from 2nd Corinthians, Chapter 12:

Paul learned to view his thorn as God’s gift.  He rejoiced in the weakness it caused; for it became God’s opportunity to demonstrate His supernatural strength.  Paul rejoices in verse 10, “Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake.  for when I am weak, then I am strong.”  He took pleasure in circumstances where he was no longer in control.  A weak Paul empowered by God’s grace was more effective than a strong Paul at peak performance.  Paul was confident that God’s grace was sufficient. (p. 52)

Pastor Adams goes on to encourage us that the Lord’s greatest work is in our times of defeat:  a work that He intends to do all along.  “Rest in this:  When we are at our weakest, God makes us strongest.” (p. 52)

It is my hope that my writings here will exemplify this teaching.  I have struggled greatly these past few weeks with episodes of physical and spiritual darkness too ugly to describe publically.  To think that I may never be free from daily convulsive episodes is a burden to great for me to bear in the midst of these setbacks.  At the same time, I continue to have a sense that perhaps soon they will stop.  Should I not hope that they stop?  I think not.  My calling is to remain faithful to the moments in which I find myself:  doing that which the Lord wants me to do, discerning the leading of the Holy Spirit, dwelling in the presence of my King often.  If that means being obedient to the Lord’s call to get off the couch to take a rescue remedy while my head is banging, my legs aren’t working right, and pressured vocalizations are emanating from deep within my loins then I will trust that my Heavenly Father will keep me safe while I do so.  It’s amazing how supernatural power overcomes my own inability to move my body correctly.  His power is real!

I recently completed a course of antibiotics to treat a gut infection that may have a connection to my brain symptoms.  The medication hurt me with damaging side effects.  After 10 days I called my Doctor and transitioned to the first of two herbal protocols that would follow next.  Tomorrow morning I will start the second of these two plans including dosing at an elevated level of an antimicrobial that I have largely tolerated in the past.  I am hopeful that recovery is possible with this new plan.  After reading Pastor Adam’s article today I will remain mindful that there is purpose and power in every moment of this journey no matter the outcome will be.  The power of Christ has indeed rested upon me in my weakest, most breathless states.  I have trusted Him completely albeit not perfectly.  He has ordained these days for me revealed in other levels of healing that I cannot disclose right now:  the longest held desires of my heart have been addressed, have been comforted.  Through seizures!

In time, the Apostle Paul saw his thorns as a gift.  “Imagine, a thorn gift” suggests Pastor Adams.  “When Paul accepted his thorn as a gift, God gave him strength.”  As I have come to my own level of peace with this serious illness, I have received many gifts as well.  Another great blessing has come from my beloved husband, Steve’s, unfailing love, presence in the darkest of times, prayers, and gifts of the spirit.  He is often my Jesus with skin-on, so to speak.  This morning he anointed me with oil as he prayed for me in the aftermath of incredible difficulties.  Oh Lord, please bless this man, this instrument of your peace!  Help me to love and serve him as you would have me do so with your strength, with words from You to encourage his heart.

You know I never really thrived when posed with a competitive situation at home, with my peers, at work, at school, or in most places in life even though I know that it is o.k. to strive for excellence in all of these settings.  I usually fell short before reaching the prize.  Perhaps my focus was on the wrong place?  Winning through losing brings us to the eternal finish line, the one that matters most, in second place behind the Lord, Jesus Christ who will share in the victory that He hath created all along the proverbial races of life.  These are the ones that truly matter.  The ones where we let Him carry us or infuse us with His grace, His power as we cross over into eternal glory.

Now that’s a medal I do want to take “home.”  Lord, in your mercy, help me to finish well!  JJ

2 Cor, 2 Corinthians, 2:9, weakness, grace, sufficient, Christ, power, overcoming trials, Bible verse, encouraging

 

 

Our God Reigns!

Seeing this sweet perching of morning doves is such a mixed blessing this morning.  They are able to sit there because yesterday I was able to cut down the massive out branching of a clematis from lower on the trellis.  Also washed the flagstone patio of dirt and some algae.  I should have worn a mask for both projects.  Acute sickness and violent convulsive episodes followed within the hour and at the beginning of a sweet Skype call with my hubby’s son and family.  So sad.
However, the experience was diagnostic in that I am dealing with biotoxin illness now more than anything else.  Also I am tolerating targeted treatments for this for the first time in 4 of these 5 1/2 years of illness.  Lord willing, I am going to get well!
Gentle Reader, let the morning doves portray the hope that I have each new day in my Lord and Savior,  Jesus Christ.  No matter what may come, our God reigns!  Very fitting the week before Easter don’t you think?

JJ