You almost lost me

The side effects were just too bad, that Linzess nightmare awhile back

It started with paranoia then gave way to profound fatigue so I went to bed.

Hell met me there, a new kind with seized spikes of lost breath and shakes

Rotational episodes this time then bouncing off the bed with gutteral screams of agony.

What to do now? Thousands have punched my life this decade of intermittent/daily misery

When I can’t even think to pray just stare blankly into my mind’s eye, lids pulled tightly closed.

The visual anomalies reminded me of another medication side effect in a Mexican hospital

When the pregnant young nurse shook nervously as she gave me medication in the middle of the night.

That night I learned the terrifying reality of black boxed hallucinations that you cannot stop or control

You hold on for dear life, wondering if you will ever come away with your sanity, if the side effect ever ends.

So Tuesday night I recognized the pattern from 2009 that ramped up to a break in mentality,

Desperately pleading for a way to think clearly, to get out of the scene stuck on repeat.

“Ozone” came into my consciousness, not spoken just present all-of-a-sudden in my thoughts

But how when I am convulsing, wretching air, terrified of injury as my head and neck thrashed so?

“Just start” came the next words, “yeah right” were mine that followed, sorry, “pray tell how?”

We found a way, my distraught beloved and I. Water spilled about and I rolled around in a desk chair unable to walk.

It was ugly alright: running a medical device that can hurt you while your head drops to bang on the table a few times midway through,

Somehow I got the treatment in me, terrified this time of doing it wrong.

You can damage your lungs you know and perhaps Steve’s if ya miss a step or two.

I drank the water: 400 ml of 70 gamma was the strongest I knew how to process

And within 2 minutes the worst of the wretched, hellish nightmare was over. Then I wept.

A few rebound shaking episodes broke through before it was all over that night

Lying on the bed staring into the darkness this time just dark no weirdness in sight.

If I did not have my medical ozone system I am convinced that tonight I would be in a psych ward somewhere not here

Drugged with anti-psychotic medications, facing weeks of infirmity that’s if the drugs could be cleared from my system at all.

I don’t respond well to medications that affect the brain or “second brain” of the gut

Even a “pediatric dose” can create a crisis ranging from gut issues to this, the worst.

Several days later the seizure threshold remains too low to function yet at my baseline

I’m doing as best I can and taking rescue remedies more often, or rather via nurse Steve, even with the episode earlier tonight.

Be wary of Linzess Gentle Reader. JJ

Treatment Update 4.25.22

When gardening and the activities of an Extension Master Gardener ends up creating more stress than joy, we have a problem. Such has been my experience of late. Then increased health issues created a bit of a medical crisis. What to do now? After 9 years of battling a serious, chronic illness there just didn’t seem to be anything left to try. Then the Lord spoke into my heart and I’ve embarked on some important changes in my life. Tonight I am encouraged! Here’s what I decided to do.

  1. Let go of a volunteer role as Editor of a monthly gardening newsletter. Within 2 days of the decision, a flare up of shingles on my face started coming down. Sure, I took some medications but I could only tolerate a couple of doses until it triggered convulsive episodes. I took a break, knowing that a new treatment protocol was on the horizon. The reduction in the stress that I experienced was quite a surprise. As an Extension Master Gardener, I loved volunteering in this way for the past 3 1/2 years and went through a grieving process letting it go. Gratefully I even got to write several articles along the way, two of which you can view here and here.
  2. Daily home ozone therapy. Here’s a simple description of what this entails. After much preparation and study along with professional IV ozone therapies 2 years ago, I drank my first dose of ozonated water this evening. So far, so good (although it tastes really strange!).
  3. Begin the process of finding an online Bible study or women’s fellowship within the Calvary Chapel churches. Sadly my own congregation was unable to help me unless perhaps I started a new ministry. Me and two Christian women bloggers did just that for 2 1/2 years awhile back but this time I’m just not up to getting something going! Gratefully I have found some possibilities.
  4. Focus on our home gardening activities where possible for the foreseeable future. There’s plenty to do here, especially if we add a second tall raised bed yet this growing season. Lord willing, it will happen and some juicy tomatoes will follow!
  5. Sleep more even if it means napping at odd times during the day or cancelling appointments.
  6. Continue in our diet the recent additions of sprouted seeds and microgreens. These have provided a concentrated source of nutrition that has actually improved some of my lab markers. This is so awesome for a gal who hasn’t made much progress in years.
  7. Do more blogging, more journaling, more Bible study, more connecting with Christian gal friends.
  8. Take more walks as I am able, especially with my beloved Steve.

Lord willing there will be fruit from this new direction. It’s been a long, difficult, and complicated journey that isn’t over yet. I might as well keep trying eh? JJ

Isaiah 58:11

11 The Lord will guide you always;
    he will satisfy your needs in a sun-scorched land
    and will strengthen your frame.
You will be like a well-watered garden,
    like a spring whose waters never fail.

Microgreens add a solid and beautiful source of nutrition to one’s diet.

Changing seasons, changing gears

As the winter loses its harshness on this second day of March, so have I. Seems that I am letting go of a few things inside and out as a change of season has landed on our doorstep . . .

Our trip to Mayo Clinic ended with a focus much different than the one we had when we arrived. Briefly, the expert neurologist informed us that my labs that I had painstakingly collated from home were “garbage,” that my problems appeared to be psychiatric, and that further testing would be a waste of money: we see 150,000 people a year in the Autoimmunity Clinic. You don’t have it! A second neurologist expert used more functional terms yet still claimed that “even a 3rd year medical student knows the difference” in the various differential diagnoses. So we (my healthcare providers to date + myself) are idiots? So it seemed as we entered the weekend in Rochester, Minnesota . . .

Six days after that first appointment, the shock of what they were telling us had worn off. The exhaustion and soreness from extensive lab testing, EEG, lumbar puncture, and 5 additional consultations gave way to a new direction in my ongoing recovery from a serious illness. It was a tough mental journey while literally trapped on Sunday in a Minnesota blizzard but I did get there. First, on Monday an Endocrinologist determined that I was on too much thyroid medication and it could be contributing to my symptoms. Holy cow! The new medication was ordered that afternoon and sent on its way to our home address. Days later, the adjustment process is both rocky and underway.

Second, the physical rehabilitation department has a special program for what they term a “Functional Movement Disorder.” The physical and occupational therapists retrain the brain using specific balance, breathing, and movement techniques within the context of stimuli for me that trigger my convulsive episodes. Interesting. A trial run of this approach was horrific! In retrospect however, I recalled an evaluation in a local Balance Center 2 years ago and treatment that was recommended for a “Mild Vestibular Disorder;” it was also horrible and I couldn’t do it in tandem with other treatments my Doctor recommended at the time. The Mayo Clinic staff say that their approach is different so I decided to begin their PT and OT home programs regardless. What if it helps? In 3 days since then the convulsive episodes have not yet changed but my balance is improving! Yay!

I don’t have an autoimmune disease as defined by the Mayo Clinic. My labs are also negative for various infections and inflammation, glucose and other markers for which my blood and cerebral spinal fluid were tested. But some other labs are waaaaaaaay off and those are the ones in focus right now. If I can progress in my home exercise program, and I suspect that I will do so quickly, I have the option to return to Mayo Clinic for a 5-day intensive Functional Movement Disorders Program. Perhaps within a couple of weeks I will know if this Program will be effective for me: if the techniques begin to change any aspect of the episodes then, Lord willing, I hope to return to the Mayo Clinic. By then my thyroid status should be moving in a better direction as well. It’s all good I guess.

Funny how enduring very early morning appointments under duress in a strange place with 1-2 hours of sleep painted a much different picture of me to these clinicians than what I am presenting now! Tonight I still feel depleted yet my stress level has gone down significantly. All of the laundry and unpacking is done along with the myriad of things you have to do after returning from a 9-day medical trip. (Our trip to Mayo Clinic was extended twice to complete all of the consultations recommended and requested.) The expenses were immense and we haven’t even seen the medical bills yet! (Did I mention that the water heater needed replacing 3 days later? Ugh.) Still I am stabilizing and in a better place than when I was struggling to just breathe 2 weeks ago.

The seasons are about to change and the gears of treatment planning for me are moving forward as well. Gentle Reader, you know my mantra will remain that Lord willing, I am going to get well! And to Him be the glory! I am grateful that Steve and I got to go to the Mayo Clinic and learn so much on so many different levels. What other levels you ask? Well that will be a bit o’ prose for another day of course. Until then Godspeed my friends, JJ

Move freely, heal well my dear

 

dancing

The importance of moving

Cannot be understated

The body not the soul,

One’s frame sans the stuff.

Blood flows, lymph drains

Breath deepens, waste can leave

If only we help it with

A little muscle contraction against gravity.

[So easy for her to say to me today!]

I cried in fear

As physical therapy began

I’d been here before

And knew about the score.

But wretched seizures

Met me by each session’s end

My body erased

The good that had ensued.

It could be different

Now that the beast is tamed

Perhaps give way to healing

And actually doing my home exercises?

Ah what a delight that will be

I do see it coming out there

Can almost reach it, so sweet

This is the beginning of healing!

Just had to mourn

Seven years lost since

The time I moved with ease

When no fear waited in every corner.

[Sigh.]

Today marked a new beginning

This time appears to be for real

Thank you my Jesus, for carrying me through

Time to give in to freedom as the healing is now here!

JJ

 

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.