Just doing my job

occupational therapy, O.T., home care, home health, assistant, therapist, accessibility, tub transfer, adaptive equipement, Hope Beyond, therapist heal thyself, tub bench, transfer, gait belt, bathroom treatment, therapy
An O.T. assisting a client in a tub transfer using bathroom safety equipment.

When I was working in my career as an Occupational Therapist, I coined the following phrase to describe my role to my patients and their families:

An Occupational Therapist takes a look at how a person occupies his or her time and the skills needed to get through the day.

This definition worked well, given the diversity of populations, conditions, and treatment interventions utilized in O.T.  Having a simple, quick definition helped me better communicate my 30+ years of licensed and skilled interventions from a variety of treatment settings that might be called upon at any stage over a course of therapy.  Together we then crafted a course of action to get the person back into his or her life as best as possible.  Funny how the person that may have benefitted the most from all of this is the one writing to you this evening . . .

Recovery from a serious illness has been a case of the phrase “therapist heal thyself” coupled with the expertise of a few other licensed professionals.  My part was to study, research, document, evaluate, revise, manage, and just hang in there by my fingernails to get through these past 4 years.  However I will credit the Lord, Jesus Christ for providing the courage and hope that my husband, Steve, and I needed to actually start seeing some progress.  And guess what, it is starting to happen!  The Lord has allowed recovery to begin!

Six weeks ago I began an ongoing, intensive course of IV antibiotics for the treatment of chronic Lyme disease.  In the interim I experimented with liposomal melatonin, 5-HTP (a precursor to serotonin), and now CBD oil (from industrial hemp).  I believe it is that latter that have helped to move my sleep/wake cycle from that of a brown bat to a gal that is just slightly a night owl.  I am starting to dream again and have a little more energy, clarity of thought.  Also the years spent chasing down mercury toxicity, mold illness, dental issues, and secondary infections have prepared me to tolerate this level of intensive treatment.  Are you ready for the biggest change of all?

The two to five hours per day of violent convulsive episodes is diminishing in intensity and duration!  This has been consistent for about two weeks now.  PRAISE THE LORD!!!!!!!!!!

We are thrilled for some positive change in my condition!  We are now hopeful that the powerful doses of antibiotics will help kill the Lyme bacteria and co-infections likely causing the seizure attacks and other noxious symptoms.  Whoa.  So how do I fill my days?  I am continuing my full time job of daily detoxing, preparing  a specifically crafted diet, maintaining a detailed treatment log, medical appointments averaging daily, supportive relationships, study-and-research, medical treatments (some complications came with the IV treatments), connecting online to forums critical to these efforts, the “stuff of life,” and taking a walk at least once per week.  Maybe this week it will be twice?  Yeah God, the pup will love that one!

Like in the past, right now I am just doing my job.  I am grateful that the Lord saw fit to lead me into the profession of occupational therapy as it provided me the skills needed to manage the mechanics of this illness.  Along the way my beloved Steve has been the greatest friend, confidant, witness, and spiritual leader that I could have ever asked for to walk this road with me.  He has labored tirelessly night and day for me, for us.  Thank you Jesus for Steve.  There are many unknowns and many more months of treatment yet to follow for sure.  No problemmo.  With my Lord and Savior at the helm, I will be fine.  Lord willing, I am going to get well!

Just thought you might like some good news from the “Hope Beyond” blog, eh?  Take care Gentle Reader.  And thank you for your support.  You rock!  JJ

Torture, water-boarding, and more: Part 1

balance-testing

These 3-part posts are not for the faint of heart.

I wish that I was not writing them.

This was my reality just 24 hours ago and it bears recording for future reference.

A true miracle usually starts with a hell-of-a-story.  So here it is, Part 1:

Many of you gracious, Gentle Readers know that I have been battling a serious illness for just over 4 years.  What began as an acute, viral hepatitis became the introduction of an ongoing drama that has now included (alleged) Chronic Lyme disease, mercury toxicity, poisoning from root-canaled teeth, Stage 2 Candida infection and Chronic Inflammatory Response Syndrome (CIRS) including a biotoxin illness.  The most wretched of the myriad of symptoms continues to be daily convulsive episodes.  And for the last 2 1/2 of these 4 years those episodes range from 2 to 10 hours per day rendering me useless for a bigger chunk of daily living.  (See this video for a sample.)  Currently there is no end in sight.

My toe clips failed and I fell off my bike on August 23rd of this past year causing a Closed Head Injury with Concussion.  While my baseline functioning was only mildly affected, the orthopedic and neurologic impacts were measurable.  I hit my left shoulder, elbow, wrist, knee and side of my head on the pavement.  Within the next few weeks I received chiropractic and physical therapies then was referred to “The Balance Center” to assess ongoing dizziness, lightheadedness, ringing in my ears, etc.  I pleaded with my Doctor to delay the 3 1/2 hour test procedures due to the severity of the convulsive episodes and the fact that the acute symptoms had already diminished.  He agreed and we delayed it one month to allow some additional time to heal.

The Balance Center had to get special permission to schedule the appointment after I mentioned “seizures,” for fear that I would not be able to tolerate the test procedures.  Wise concerns.  My Doctor approved their request to proceed!  When the day got nearer I intervened and delayed it another month to October.  My Doctor understood my reasoning back then and pressed for me to complete the assessment as scheduled this past week.  He stated that there still could be some vestibular issues contributing to the convulsive episodes and lingering symptoms noted above although the latter had improved.

I knew I was doomed.  Having worked in occupational therapy for over 3 decades until disabled by this wretched illness, I knew about vestibular testing and rehabilitation.  I had attended a weekend training for it many years ago and referred my home health patients to this very clinic!  Now it was my turn.  I also knew that test devices with moving parts that cause you to lose your balance, spin you around, prompt you to move your eyes rapidly and the like would be hell for me.  I did not think I would be able to complete most of it.  That is exactly what happened:  the first appointment in October had ended after the audiology test portion: a simple hearing test in a quiet, sound-proof booth!  When the audiologist entered the room to review the results after I had just stopped seizing, her perfume sent me into more violent episodes.  It took a long time to recover from everything as I sat in a cold chair in a long hallway, staff and patients busily walking by . . .

They did the best they could with my atypical “case” perhaps.  However, the room with the sound-proof booth was already booked for the next patient and the schedule, the schedule, THE SCHEDULE must go on don’t you know?  Such is life in modern medicine these days.  It was a very desolate feeling to sit there with my unsupported head banging around with no where to lie down to minimize injury.  Gratefully the technician was very nice as she escorted me to my “recovery chair,” and later offered to reschedule me.  Reluctantly we settled upon the last day of the year:  that was yesterday.

See Part 2 for the rest of the story . . .