I’m still here

A brief update:

A second trip is now behind me to see my Craniomandibular Specialist in a southern state and the problems plaguing me for 6 1/2 long years are significantly less and yet my progress has plateaued.  Maybe it’s still the fatigue of travelling alone for the first time in 11 years?  Holy cow, I did it!  And ugh too.  It was hard.   Regrouping and resting now, changing up a few things, and I am noticing that those changes are already helping, for example, to  reduce the daily headaches to a trace level.  Amazing!

I am tempted to be discouraged about the plateau in progress and some setbacks but I will choose not to be so.  Both happen in the jagged line of recovery from serious illness.

Life goes on and the care of a family member in that same southern state began before the first medical trip.  Looks like the Lord had more planned than we originally thought when my hubby and I took a leap of faith to seek treatment 1,000 miles away from Indiana!  We are now preparing to welcome my Aunt into our home for 2 months this summer after many hours of preparation, work, and communication with multiple parties.  There is much to do!

Seems that the Lord wants me to keep moving forward as he has created a new role for me with increasing responsibilities:  caregiver.  I never thought that it would be harder to care for one tiny lady than the TWENTY I served in a day in my professional role as an Occupational Therapist.  Right now it is!

My Doctor’s office cancelling 7 medical appointments already this year due to chaotic scheduling issues confirmed my pursuit of a new integrative medicine specialist.  My Doc is upset and I am proceeding to transition some of my care to her anyways.  The change is refreshing and creates hope in some areas not addressed of late.

Steve and I have several decisions to make should my family member decide to move in with us later this year after her summer visit.  Some parts of our life could accommodate her easily, others not so much.  We will have some financial decisions to make involving vehicles, housing, and several lifestyle choices.  Could be good?  We are exploring many options and leaning on the Lord as we go . . .

I am a bit overwhelmed with the new modalities that have come since pursuing specialized Temporal Mandibular Disorder treatment, from application of a TENS unit to switching out dental appliances every time I eat or sleep.  Wonder where I have been instead of writing updates on the Hope Beyond blog?  I am still here, flossing my teeth 4 times per day!  Spitting mouthwash into a baggie in my truck after eating between appointments when away from home is not that unusual for me now . . . from the back of the parking lot where no one can see me of course!  Oh my!

The biggest change of late is having a bit more energy and mental capacity to do a little more a few days per week.  I am exceedingly grateful for this.  Thank you Lord!  We anticipate a lot of changes, projects, and the need for both physical and mental stamina this coming year and looks like it is coming little by little.   I hope the finances for everything will follow as my Go Fund Me campaign has also plateaued!  We will figure it out, so no worries.  The first of the two medical trips is now covered, gratefully.  God is good and the Great Provider has always cared for our needs.  I can see a possibility of working some within a year a so depending upon the needs of our “new” family member; she may move in with us permanently or choose to live closer to her adult children in Michigan.  Just not sure yet.

I am tired.  Healing takes sooooo much energy from healthy food and rest, good supplements, time with the Lord, and restoration activities with my beloved Stevers.  Sunday was my birthday so we did that last one.  A simple day was a great gift with my bestest buddy.  I love him so much.  I am so very glad that you are still here too.  I could never have made it today without you Babe.  Thank you Jesus for Steve.  Please bless him this week and encourage him as he works so hard for both of us.  Infuse him with your Spirit to lead us through this maze of life in which we bumble along.  Help me to love him, respect him better and better too.

woman, birthday cake, birthday, carrot cake, celebration, lunch, with husband, Christian, woman kissing cake, table by the window, lake view

Carrot cake was my birthday treat at the Oakwood Resort on Lake Wauwasee

I know that the Lord has gone before me and been with me, drawing me to Himself and bringing me to the moments He planned for me yesterday, today, and tomorrow.  I lay everything named here in your mighty hands as I prepare to go to sleep.  I know that You are still here too.

And on that promise all of us here may rest.  You too.  Godspeed Gentle Reader, 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

 

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 . . .

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

 

The Gentle Giant

Standing over 6 feet tall, the man could have been mistaken for the childhood Green Giant hero of the Television Age.  He let his hair grow long, beard get kind of scruffy, and middle section pudge just enough to make his bear hug just right.  The children squealed when he growled and chased them back up the basement stairs when he had enough of their antics and needed to get back to work in that mysterious and yet wonderful business within those concrete walls.  More on that story another time.

The man was as conflicted as any could be in this life.  I’ll call him the Gentle Giant or GG for short.  My knowledge of him is pieced together from some vague memories, his hand-written journal, a few newspaper clippings, internet searches, and the stories from family members. Call it a great tragedy or perhaps work of satire as he never reached his full potential in this world.  Lord knows, he tried.

GG grew up in the blue collar suburbs of Detroit, Michigan as the son of an auto mechanic and never-quite-satisfied mother.  His dad let his mother rule the household including harsh discipline for the boys of the family.  Beatings, torture, destruction of their few prized possessions, restriction of food, verbal abuse, and lying about it all to suspicious outsiders comprised his private hell.  She destroyed his model airplanes, locked him in the closet, and made him sit at the meal table all day and all night as abusive punishment for just being alive.  The next generation (grandchildren) would be treated differently as would the girly middle child; the oldest brother would turn gay and befriend his mother and father in a strange twist of survival-perhaps-denial until he died of AIDS in his forties.   The baby of the family barely made it out alive when the older siblings were no longer around to protect him.  GG, the second oldest of the four children, had finally found his way to break free.

GG made a plan to marry the first woman who would accept his hand in marriage.  It took a few years after high school to find a suitable mate who was willing to marry him, perhaps in an attempt to escape her own abusive and alcoholic father.  They quickly had 3 children and a relationship burdened by his physical abuse of the mother.  The oldest took an overdose of her mother’s thyroid medication requiring having her stomach pumped at only 3 years old; the middle child developed a life-long inferiority complex from being told by his dad that he resembled his mother’s family more than his.  And this was only the beginning of things that went wrong in that household.  By the time the five of them had moved from the trailer park to their new home, GG was having periodic psychiatric breakdowns.  Experts have determined later that these were likely the psychotic breaks of paranoid schizophrenia.

GG struggled with the adult responsibilities of work, raising a family, relating to his wife, and managing the internal chaos of his mental illness.  He came into the realities of adulthood with too much brokenness to overcome; he was a brilliant inventor and draftsman yet could not control his own mind to ever find true happiness or success.  GG defied the counselling offered and declined the psychiatric medication newly developed that could help control his thought disorder.  He took an extended leave of absence from work and, instead of getting well, used the time to build a business in the unfinished basement of their home.  It became wildly successful in the hobby world of the 1960’s. How his employer never found out is another mystery.

Unfortunately the same ingenuity that brought him initial success 1) as a non-degreed draftsman for a major automaker and 2) in the home business, did not work when he applied it to his mental illness.  He experimented in psycho-cybernetics, hand writing analysis, the occult, various activities of the hippie crowd, drinking alcohol, and more.   Eventually he left town on his motorcycle with some blonde chick for California with all the profits from the business . . .  The children saw his father come and go in a myriad of painful and confusing scenes over the next few years until finally their parents divorced. Their dad lived in another suburb across town thereafter but the holiday visits and false hopes for things to be right never fully materialized.  Eventually GG left town for good and had no direct contact with his family for the next 27 years.

GG sent threatening letters to his mother for several decades, perhaps wrestling with her years of abusing him and what to do with it.  Sadly he hurt his own children as well in other ways. Over the years, the oldest daughter had witnessed satanic rituals, was abused by some women in the course of some psychedelic mayhem at his house across town during a visitation weekend, and was then tortured herself by GG in an attempt to help her “forget” what had happened to her.  The middle child witnessed his father’s domestic abuse of his mother and personal self-degradation as his father used mind control techniques on him in a misguided attempt to try and help his son.  The taped messages he recorded ended up having an opposite effect!  And the spirited youngest boy got as far as he could in life then, as a young adult, tried to find his dad who had left the family when he was barely past kindergarten. His dad’s letter of rejection was found by loved ones in his wallet after the young man died of alcoholism.  The surviving family grieved deeply.

GG’s experimentation with mind control techniques inadvertently opened himself up to the demonic realm.  The darkness in his eyes reflected this in particularly frightening scenes recounted by his children.  Knowing this, understanding his abusive upbringing and resulting mental illness then their own coming to faith in the Lord, Jesus Christ, has helped the two surviving siblings forgive their father.  They have found peace with their past and with their dad. The man was simply lost.  He had no idea the dark world he had incited nor the abuse he ended up carrying from one generation to the next.  It took the daughter in particular, many decades to understand this and break free from the trauma and demonic influences.  How that happened is yet another story.  The miracle of overcoming such hell gives testimony to the incredible power of the gospel through our Lord and Savior, Jesus Christ.

Thirty years after the oldest sibling last saw her father and two months before he died, she got to meet with him at his retirement/trailer park in Florida.  They had slowly developed a new relationship by phone before he eventually agreed to a visit in person. The Gentle Giant was frail yet charmingly engaging.  He told her tender stories of her days as a little girl and of how proud he was of her.  He told her that he loved her and by the time of their visit had shared how he had to leave their family to protect them from further harm.  More psychological breakdowns had occurred over the years.  His isolation from family and most of society became part of how he managed his illness in addition to long sabbaticals from work. He jointly held over 27 patents with a major manufacturer of automotive parts and would say that was why they “put up with him” and his leaves of absence.  The woman would see how creative her father was in crafting his life with the fragments he had been given . . . how incredibly her Heavenly Father would sustain her own life until those sweet moments of reconcilliation with her dad could bring closure, bring healing, bring some sweetness too.

Our earthly fathers have incredible importance in how we turn out in our lives.  They are the first authority figures in our lives who initially influence how we relate to our heavenly Father who is exceedingly greater and perfect;  ways that our earthly father can never be.  A loving relationship with both are critical for grounding us in this life on earth.  Even in the absence of a good dad the yearning of our hearts can lead us to the One Who will never leave us, never forsake us.  I do pray that in this story you will see how the “seeking” of one young girl as she became one older woman led her to overcome the failings of her father by filling those empty and hurting places with the unfailing love of Jesus Christ.  Graciously she did get to feel at last, the love of her real father before he died.  Not everyone will have this kind of opportunity; others will experience it their entire lives.  Regardless, we all can be whole no matter what darkness has fallen on our journey through this life.

I understand these experiences very well nurtured with truth from the Words of our Lord in His scripture and the indwelling of the Holy Spirit.  Further, the Gentle Giant in each of us can be transformed from sorrow to joy if we but believe in His holy name, Jesus Christ. Healing and fullness of life will follow us all of our days into eternity.  I love that.  Oh Heavenly Father, I thank you for this story and for Your story of redemption too.  May you speak to the heart of the Gentle Reader who finds these words this day, filling him or her with your goodness. Bring them into the best of relationships found only with You.  Bring hope beyond what we all can see.  For your glory I pray in Jesus’ name I pray, amen.  JJ