Pursuing The Next Big Thing

Well I gave a detailed rationale in a recent post for me pursuing TMJ/TMD treatment to help alleviate intractable seizure attacks that have plagued me for the past 6 years.  Basically if the cranial nerves that exit the brain at the top of the neck are pinched from tight or misaligned muscles and tissues around the face, neck, and jaw then pain and a myriad of neurological problems can follow.  A physical trauma, especially auto accidents, often starts the problem.  Dental professionals who specialize in this area can provide relief for movement disorders such as Tourettes Syndrome, Parkinson’s Disease, tics, dystonia, and atypical seizure disorders using various dental appliances and therapies.  My research into this began a few weeks ago after an Ear Nose and Throat Doctor suggested I look into issues related to one of the twelve cranial nerves (vagus); I found that my symptoms involved seem to relate to several of them and require a broader, more functional bio-mechanical perspective.

Sooooo, since TMJ pain began for me after an auto accident in 1996 and worsened with convulsive episodes beginning in 2012, I brought up this topic with my chiropractor and brilliant primary care doctor this week.  Both agreed that specialized dental appliances are a good avenue to pursue.  Both have provided supporting medical documentation to support my case and the latter reviewed the Curriculum Vitae of the Dental Specialist that I have selected (after interviewing 13 dental professionals from around the country!).  My hubby and I are prayerfully preparing to proceed accordingly, with faith and confidence that the treatment will be effective in due time.

Once we made the decision, we had no idea what would happen next.  There are significant unknowns in this process, not the least of which is a significant financial commitment for specialized care out-of-pocket and for out-of-state travel for nearly 3 weeks.  We just knew that I needed a new treatment direction and that these new interventions seemed compelling to address many problem areas (’cause hey, even chewing food can trigger episodes!).  The next steps were for Steve to approach his employer for an extended leave of absence and for me to start scheduling appointments, making campground reservations, contacting family in the area, and so on.  Gentle Reader, it’s only been two days and the following blessings have already come to light:

Steve’s employer granted his request for a leave of absence and will provide a company computer so that he may work remotely while we are away.  Harris’s company headquarters is about 2 1/2 hours away from my new Doctor’s office by car and for the second week of our trip, Steve will be able to share an office there with a former coworker he knows who transferred there 2 years ago.  Awesome!  And guess what?  His employer is located near the Kennedy Space Center where Harris will be launching a ROCKET FROM CAPE CANAVERAL right in the middle of the 4 days we will be staying in the area!  Holy cow!  How cool is all of that?

Just a week ago, I finally was able to get in touch with a best friend from my childhood with whom I have not spoken in around 37 YEARS.  Guess where she, her sister, and her Dad live?  Very close to the same town where I will be having my treatment!  They were a huge part of my growing up years, especially after my parents were divorced when I was barely a teenager.  Tammy and I spent hours playing house or school on her back patio after dragging outside a myriad of furniture and supplies from both of our homes.  Sometimes we had just gotten things set up and her mom would come home from work so we had to put it all away again!  Then there was the backyard carnival we made to raise money for the Muscular Dystrophy Association.  Her little sister, Patty, dressed up like a gypsy to give words of wisdom in the “fortune telling” pup tent!  Their Dad was so very sweet to me when I would see him working in the yard, carrying tools along the sidewalk between our houses.  His kindness was very comforting at a tender time in my life.  All are good memories indeed.  I look forward to seeing each of them!

Halloween, 1960s, 1967, front porch, Linville, Warren, Michigan, Kids, children, costumes

From right to left: Julie, little brother Rob, Tammy, Tammy’s little sister Patti, and another neighbor at Halloween in 1967 or so!

If that wasn’t enough, we also hope to see an Aunt of mine who has lived in the area for decades.  Steve and I last visited her 5 years ago when I was near the beginning of this illness.  When I talked to her on the phone about maybe seeing her, she disclosed that she is struggling with a serious brain disease and having difficulty functioning.  My heart sank.  She explained quite candidly that her ability to perform activities of daily living has become increasingly compromised over the past year such that she doesn’t want to live alone anymore.  She has not been able to obtain assistance from her medical providers in obtaining the supports she needs.  It is not clear how aware my two cousins are of her condition; I may be the first person to visit her home for many years as all of us live 1,000 miles or more away.  My heart is breaking for her while my mind as a licensed occupational therapist is churning with the possibilities of what this all means.  Steve and I will start to sort this out by going to visit my Aunt with the goal to simply love on her, bring a meal, and visit for awhile.  Lord knows what will follow thereafter, likely some phone calls to my cousins up north . . .

Gee, if all of this has transpired in just 2 days, I wonder what awaits us in the next week?  We are praying continuously about everything mentioned here as we begin to make our travel arrangements.  There are repairs needed on the travel trailer and much to do.  What is certain though, is that our Lord Jesus Christ is already paving the path before us.   He always does, of course, and this time we are in awe as we can see it unfolding as we speak!  Very likely we will need to raise some funds for my care so stay tuned for the details and please pray with us as we embark on this magnificent adventure.  I have been through dark times before and have seen the Lord miraculously “restore the years the locusts had eaten.”  (Joel 2:25)  Sure looks like He is moving again in our lives right now in a big way.  Thank you for coming along side me with each post here, each little tear.  You make a difference just being there reading this, tracking my story.  God bless you for hanging in there with me!

Gentle Reader, I have hope again.  :J

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.

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

Navigating the Mine Field of Recovery

Those of you in treatment for a serious illness know what this title is all about:  trying to figure out what will bring recovery or remission without making you feel worse!  Oh yeah.  Patients battling chronic illness talk about “herxheimer reactions.”  That is where either die-off or some kind of healing crisis brings on worsening of symptoms and even new, noxious symptoms.  Not fun.  So what is a person to do?  Unless otherwise advised by your trusted healthcare practitioner, here are some things that have been helpful for me:

  • Slow down your treatment protocol or take a break in treatment.
  • Try only one new thing at a time and at a lower dose if possible.
  • Take binders such as benonite clay, activated charcoal, chitosan, and binders of heavy metals (e.g. Intestinal Metals Detox).
  • Drink extra fluids especially pure water.
  • Add some hot lemon water first thing in the morning on an empty stomach.
  • Eat bitter foods which help support liver and kidney drainage channels (such as select herbs, radishes, dandelion root tea).
  • Do what you can to keep your bowels moving at lease once every day, minimally!
  • Step up your preferred method of detox such as salt water baths, infrared sauna, colon hydrotherapy, and exercise as tolerated.  Even massage, physical therapy, and chiropractic care can help release waste products trapped in your tissues.
  • Add nutritional supports for detox as you can such as glutathione (or precursor of lactose-free whey powder), vitamin C-rich foods, and minerals (such as magnesium, Dead Sea salt baths, Celtic sea salt, Quinton Quintessentials, and the like).
  • Make rest a priority!  Healing takes a lot of energy!
  • Pray.  The Lord cares, hears, and will lead you unto Himself if we but call upon His name:  Jesus Christ.  There is no greater comfort than this Gentle Reader.

So this is where I am at these days.  Last month I had to take a nasty antibiotic for the same infection and it hurt me badly so I ended it at the short end of the recommended treatment range.  Then I stepped up nutritional supports before adding a new treatment.  I tried to add a new biofilm-buster when treating a gut infection and reacted poorly, so I will take a break from it for now.  This month I was able to tolerate hot lemon water with manuka honey which is a combo I have not tolerated in years!  Changing brands of glutathione helped me to start taking this critical element in the 3 phases of detox, yeah God!  Also, using a combination of binders has helped slow down some overnight convulsive episodes.  I hypothesized that killing infections  released  toxins inside of the bacteria and fungi targeted, contributing to an increase in episodes.  So these days I am really glad for the leading of the Holy Spirit, and a myriad of webinars from really smart researchers who suggested binders.  “Yeah God” for the relief that has followed.

Psalm, 7, 37, rest in the Lord, wait, patiently, Him, Lord, peace, Christian, healing

I guess then it is time for a nap.  No matter that it is a beautiful day outside.  Naps are a beautiful thingy too ya know.  Lord willing, I am going to get well!

Take care, JJ

 

Into the clearing

When a calming washes over me with which I am unfamiliar

I wonder if it could be here to stay?  Oh my merciful Lord, please!

The headache barely whimpers anymore and her pain cousin screams less

Making me wonder if something real is happening:  “is it live or Memorex?”

Napping fills my afternoons, pill counting still dominates my days, overnights

With fewer medical appointments I can listen to my own body better

And experiment with all that I have learned, all my Great Physician has taught.

Some little sewing projects have kept me going through this stage of recovery

I’ll share it with you if I ever get them done with scraps of stuff from here and there,

Just like life isn’t it when putting pieces together then ripping out the crooked ones?

Maybe someday it will look pretty or be useful somehow . . . until then my Maker “sows.”

What will I reap when the seizures finally stop?  Will life become filled with color and smiles?

Alas until then, Gentle One, watch this space with me for I am hopeful again, not as bad,

Yes at last, I am hopeful again.  JJ