What else could they do?

The glass chamber is designed to match your body temperature while you complete the subtests of the Pulmonary Function Test. Mike did his job. Steve helped where he could. And for me?

The trauma was REAL.

The cardio-pulmonary work-up continued this past week with a carotid ultrasound, beginning of a 7-day EKG event monitor, and the torture chamber otherwise known as a Pulmonary Function Test (PFT). Perhaps the PFT is not designed to create stress but completing it between 5 sets of convulsive episodes was a real bite in the shorts!

I knew the risks for me for the PFT from having completed one about 5 years ago. We were unable to progress to the section administered after a bronchodilator medication because of convulsive episodes triggered in the first few subtests. So this time I asked my beloved to drive me to the hospital for the test and brought with me several rescue remedies that sometimes stop the attacks. With assistance to administer them I might get through it all. When Thursday came I was not motivated to head out the door for the hospital and after only 4 1/2 hours of sleep. Looked like it was going to be the same story, different day.

The first part of the test went alright as Respiratory Therapist Mike kept a close eye on me. I had given him the spiel of what can happen if I had a seizure attack, including the request not to call the paramedics if I had an episode! He said he understood and actually stayed calm throughout the entire ordeal. Seizure-like tics began after the 2nd subtest and most of the ones that followed. Steve graciously brought me the ice pack I had in my lunch bag which served to slow each episode once placed over my sternum. We continued and eventually got it all done like a good beating on a warm summer day.

The test that required you to breathe against resistance was particularly frightening. When deep breathing or panting re-triggers the episodes, I thought that surely breathing against the mouthpiece where my airway would be blocked would be good. On the contrary. It actually calmed me down considerably! Holy cow. Have we found another tool to help control these dang things? Mike said that breathing against resistance stimulated the vagus nerve. Well there you go again. I first started looking into vagus nerve seizures and treatment strategies at the beginning of 2018. This ultimately led me to see a Craniomandibular Specialist and the rest is now history. But here we are again. The trigeminal nerve of the TMJ and the vagus are interrelated cranial nerves. To date only these 2 of the many vagus nerve stimulation techniques I have tried have proven to be helpful. Turns out there is a difference between the sympathetic and parasympathetic fibers of this 10th of the 12 cranial nerves; the trigeminal is the 5th. We shall revisit this topic here again another day for sure.

The PFT was scheduled for about an hour. We left after 2 hours! Each time there was a trigger of seizure-like tics, we had to stop for me to struggle to pick up the ice pack on the laminate floor of the glass chamber, apply it to my chest, then wait for things to calm down again. The violent shaking wrenched my neck. I longed to lower myself to the floor and curl up in a ball, holding my head and neck. The pain, the pain. At home I struggle (or Steve carries me) to lie down someplace safe where I can grasp my head and neck to prevent whiplash. Not so during the PFT. My right leg banged against the metal frame and glass walls of the chamber a few times; my body tensed with fright as I feared falling off of the narrow stool and onto the hard, linoleum floor. No warm blanket was anywhere to be found. Mike and Steve just watched in silence each time. What else could they do?

Times like these finds me terrified of falling and getting injured. Gratefully I have never fallen even after thousands of these wretched episodes. But initiating movements of any kind to either speak, break a fall, or otherwise create safety exacerbates the directionality and velocity of the seizing; this in turn creates a high risk to fall or get injured! Too bad that I am awake to remember all of this hell unlike an epileptic seizure where the person is unconscious. (Well it’s probably good so that I don’t have the injuries that can come with falling after passing out.) I guess it’s my own form of grace manifest as survival mode. Tense my muscles to prevent of a fall but trigger a rebound: increased rapid-fire, uncontrolled shaking of an appendage or two that may bang against whatever is nearby. Metal frames and glass walls. Still can’t speak most of the time. Breathing? Yeah maybe. Oy vey. I hate this!

It took awhile after the PFT was over to regain enough muscle control to walk out of the chamber of doom to a chair across the room. Perhaps it will be diagnostic for the cardiologist later this month as to why forced-breathing maneuvers trigger such bad episodes? Maybe the test results will show something this time? Everything flooded my mind as I tried to be pleasant to the two men staring at me the whole time who were powerless to do much to help. They were both most kind. I could see it in their eyes above the masks they both wore. (I was the only one allowed to remove mine! Go COVID-19!) Mike and Steve remained standing as I slumped into a hard plastic chair in the opposite corner of the room. One of them asked if I needed anything but I just couldn’t speak very well yet to respond. Managing the wires from the EKG event monitor, holding the ice pack to my chest, and groping for a snack bar in my lunch bag for something to revive me was about all I could handle. Steve opened the packaging of a Clif Nut Butter Bar and helped me get a drink of water. He knows the routine well. Love that man!

Cracking jokes has been my way to bring humanity to this hell when someone new comes along for the experience. “Welcome to my nightmare.” “I guess I’ve completed my involuntary exercise program today.” Or something similar are my usual bylines. I let a few fly. Before long we were leaving. I was walking verrrrry slowly however.

Somehow I got through a telehealth medical appointment a few hours later followed by a full day of several long blocks of sleep. Thankfully I had made some food ahead of time and thankfully Steve was willing to bring me a meal later on as I began to recover. My Skype appointment on Friday needed to be cancelled and I declined an additional make-up appointment from a second Provider. I was too weak and shaky. About all I accomplished on Friday was a load of laundry and achieving many levels on a word game app. The pup got lots of scratches too.

Two days later I realized how traumatic all of this was. A dearth of tears busted out after yet another bad episode and eventually I got the story typed out here. Perhaps someday these wretched convulsive episodes will stop. Maybe my beloved Steve and I will actually get a peaceful night of sleep on a regular basis, together. Maybe my life will be about the volunteer stuff I get to do here and there instead of medical appointments every week. Seems like we are getting closer than ever before to the mechanism of action of what triggers and what stops these waking, convulsive episodes; I have a few rescue remedies that keep me out of the emergency room these days. Yay God! Lord willing, I pray and plead, my Jesus will mercifully bring me to complete healing. Maybe someday soon? JJ

King Tut Grass and Cannas @ParkviewHealth
Mandevilla vine, Begonias, Geraniums (right) and Potato Vine (left) @ParkviewHealth

He’s going to make it

My beloved is following his dream

To fly, fly away, up into the sky.

Tis nightfall before the test of his study

Everything in him has turned accordingly.

I knew from my past what to do

The helpmate must get behind her man.

Extra chores, some sacrifices and then

You will share the joy of your man realized.

For settling one’s fears yields a greater good

Don’t worry dear wife, he will share this with you.

Your life will be even better than ever, it’s true

Fall in love with his loves as you do him too.

The rewards will come naturally and exceed your dreams

Your own desires will be satisfied along the way too.

God’s plan is so good. Trust in it this night.

My beloved is going to become a private pilot

“Gooooo Steeeeve!” I love you!

UPDATE: And after rescheduling due to overcast skies, Steve became a private pilot on Tuesday, August 20, 2019. Congratulations my love! We celebrated with his first flight that Friday with my beloved as Pilot-in-Command and yours truly. Story to follow . . .

As you consider Holy Yoga: Part 1

Holy Yoga, pose, woman, mat, Christian, blog, evaluate, discernment

As an occupational therapist trained in therapeutic exercise and as someone who taught aerobic exercise in clinical settings years ago, I have always watched the trending in the health and fitness industry.  I recently explored various fitness certification opportunities as part of my continuing education requirements as an OT, including those oriented toward low impact dance and yoga.  ROM Dance  was part of my repertoire years ago when working in mental health settings.  Match these interests with keeping a close eye on the alternative health industry that came on the heels of the New Age movement of the 1990s.  Early on I decided to match all of these observations against the available clinical research and especially the truth of Biblical scripture as guiding lights.

So is there a back-story?  Yes, there’s more!  I am seeking a gentle, supportive movement  practice, ideally consistent with my Christian faith, to aid in my recovery from serious illness.  The trauma of this serious illness has left me with several medical complications, deconditioning, weakness, physical limitations, and an altered body awareness that I believe can get better.  I had been exploring and pursuing some possibilities in the world of dance, exercise, massage, and traditional occupational and physical therapies when along came Holy Yoga:  a “community of believers on mission to bring the Gospel to the ends of the earth through the modality of yoga.”

In a few blog posts, I will explore Holy Yoga and come to a personal decision about whether or not I will pursue it at this time.  I started my research at the Holy Yoga website then jumped right into some challenging viewpoints but not from the Christian or even medical communities.  Instead I listened to a lengthy YouTube video of Hindu philosopher, Rajiv Malhotra’s, interview of Holy Yoga Founder Brook Boon.  Talk about what the political world calls “opposition research!”  Below is the feedback I posted after viewing the interview.  My next steps will be to research the response of the Christian community and probably attend a class locally.

Here’s Part 1.  Stay tuned for Part 2!

Nice job Brooke Boon!  I might clarify to Mr. Malhotra that Jesus is God, the Holy Spirit is God, the Father is God:  the God of the Bible and NOT a manifestation of God.  Each person of the Trinity is one God, 3 persons.  Liken this to the fact that I am one human being but a wife, sister, and daughter or 3 person-alities.  Not an exact analogy but it can help understand that the one true God is a clear, Biblical distinction from the plethora of Hindu gods that are dead, powerless manifestations of their “god.”  But more on that theology is a discussion for another time.

Further, I really wish Mr. Malhotra would have had the decency to give Ms. Boon his interview questions beforehand, especially if he intended to debate the nuances of Hinduism and Islam in contrast to Christianity.  He said the interview was to be a “dialogue” however his theological questioning and word choices indicated otherwise.  His agenda to discredit Holy Yoga was polite yet clear.  For example, he said at the end of the video that Hindus must “be aware” and essentially wake up to what Christians were doing with Holy Yoga; he also claimed that Holy Yoga’s purpose was to evangelize.  Seems like evangelism may come with the Foundation’s outreach to victims of sex trafficking but wasn’t this an interview about the story, benefits and beliefs of Holy Yoga classes not the Foundation?  Might want to differentiate the two sir.

It was important for me as a born-again believer in Jesus Christ who is exploring Holy Yoga, to view this interview.  I saw clearly how someone who is not a Christian cannot fully understand the tenants of the Christian faith from, for example, literal translations of scripture.  These literal interpretations weaken Mr. Malhotra’s subtle challenges, arguments, and warnings about Holy Yoga.  Specifically, his references to “the law” were not about Roman law as he claimed but God’s law given to Moses (as documented in the God-inspired Old Testament) to help guide the nation of Israel.  The Mosaic law helped define right and wrong to a lost people, lost society, and provide guidance as to how to live.  It also instructed them on how to relate to God and atone for sins or wrongdoing.  This law was later replaced with the death and resurrection of Jesus Christ, indwelling of the Holy Spirit, and New Testament teachings from Christ and His disciples.  Persons of various “religious affiliations” or “denominations” outside of Christianity seem to like to focus on “the law” concept instead of Christ’s concept of grace because they are used to the structure and constraints of rituals . . . as if it is the rituals themselves that make them somehow right or wrong:  better people or worse yet, right before their definition of God.  And their definition does not match that of the single God of the whole Bible.  Christians who are born-again believers are free to express themselves with various traditions, cultural garb, etc. (and even try on the dressings of others) but never look to them for salvation.  Cultural traditions/trappings have no inherent power.  Only faith in Jesus Christ alone can save:  bring us eternally into a right relationship with The One True God and eternal life.  It’s simple really:

John 3:16 New International Version (NIV)

16 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.

Of course we want to share our faith with others as our joy and calling as believers in Jesus Christ.  (Matthew 28:19-20).    Looks like a lot of fun to me, to find an established method of breathing an exercise while praising God!  Wish they didn’t use the Hindu words though, as it will be confusing to many who think that Holy Yoga is completely Bible-based.  There are gray areas for sure.  Holy Yoga borrows many traditions of Hinduism.  I hope that the classes clarify this for participants.  But is that enough to avoid it?  Or not find a way to enjoy its benefits?  Perhaps the earthly “gurus” of Hindu yoga could view the adaptation of the breathing and exercises of their yoga traditions as more of a compliment than a threat.  Such is the nature of humanity to not want their invention changed.  I am sure that the major drug companies don’t like competitors making generic copies of their drugs either!  But hey, children often imitate the characteristics of their parents and hopefully a lot of times this is a good thingy!  Imitation can be an expression of flattery, friendship, even love.

Because of the prevailing pull of the world on Jesus’ own disciples and their need to overcome it, Christ petitioned for divine intercession to keep his disciples “not of the world” by being sanctified through the word of God, which is truth (see John 17:16–17 below*).  Believers must guard our hearts in all pursuits with the truth of Scripture, spiritual armor (Ephesians 6), prayer, heeding the conviction/discernment of the Holy Spirit.  Mr. Malhotra quoted the apostle Paul extensively in his post-interview analysis.  Perhaps the apostle Paul just wanted to be friendly as he adopted some behaviors and garb of the people groups he was trying to reach out to with the hope found in Jesus Christ?  Surely we can understand this today.  Don’t we bring a gift a friend would like to his or her birthday party even if it is not our own favorite hobby, taste, brand, or preference?  Or let a co-worker listen to a CD of our music in hopes he or she will enjoy it and share it with others?  Let’s be clear, however, that the  lovely cultural trappings or activities that make life sweet are never equal to the incredible gift of salvation that comes from belief in Jesus Christ.

Please look beyond the rituals, the cultural trappings, the methods of exercise and breathing, the physical stuff of this world as you evaluate the practice of Holy Yoga.  Each believer in Jesus Christ must decide for him or herself, how to apply the real substance of the Bible (and of life for the believer) is the Word and the truth it professes to our daily lives.  Explore Holy Yoga with knowledgeable believers.  Pray about it.  Examine the world view of your particular instructor too.  And if everything checks out o.k., enjoy a really cool exercise/meditation class in the meantime.

JJ

*John 17:16-17 New International Version (NIV)

16 They are not of the world, even as I am not of it. 17 Sanctify them by the truth; your word is truth.

Where to go from here?

More testing, more phone calls

Why did I ask for preliminary results?

Wouldn’t you knowing my next appointment was so far away?

Two hours of seizing.  Every day now.  Of course I asked!

Sigh.

Full report due next week.

The findings of acute toxoplasmosis will be clarified.

Will PCR or the summary mean more antibiotics

To challenge my innards, still reeling from IVs last year?

I cried when I should have been glad

To know there was something there after all —

The test will cost over a grand

And we have no idea what insurance will do.

So for now I wait.

The specialty lab is delivering on time

Hoping the Lab Director talks to my Doc

And none too soon . . .

Hold me Jesus.

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?

SIBO, small, intestinal, bacterial, overgrowth, abdominal, pain, tummy, stomach, appendicitis, clostridia, infection, test, OAT

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