Prayer Request

Gathering medical records and other documents, making travel arrangements that accommodate my sensitivities, and putting together a timeline of the serious illness I have been battling for 8 1/2 years has been an emotional process for me. Just surviving to this day has been a traumatic experience. The blessings are there too yet not as clear right now with the hundreds of sheets of medical records behind me as I type this post.

I have endured so many dead ends and dashed dreams for recovery, physical damage from thousands of convulsive episodes, tens and tens of thousands of out-of-pocket expenses, and so many losses on every front of our lives. One truth is clear that I would not have survived this far without my faith in our Lord, Jesus Christ. He was my Rock when my breathing would not start in the darkness of night or my legs would not move to get me to the bathroom. Both my beloved Steve and my Lord carried me through it all to this moment in time.

Regardless of what has gone before us, Steve and I are pressing forward, hopeful for a good result at an upcoming consultation at the Mayo Clinic. For the first time since the onset of this serious illness, I get to see one of the top Doctors in neuroimmunology at THE top medical facility in the country. That is humbling. I am grateful.

Now is the time to pray for a cure to the daily convulsive episodes. Lord willing, I will be well! Thank you for your love and support, Gentle Reader. Love to you, JJ

Tough and Tougher Still

Another injection of Prolia behind me for osteoporosis: Six weeks late due to having to change Providers and get re-authorization.

Nursing Supervisor administered the injection instead of the CMA as a precaution after discussing my history with these thingies.

One hour continuous convulsive episodes followed whilst clinging to a raised treatment table, fearful of falling off. The PRN Prednisone did nothing.

Nikki, the very sweet Nursing Supervisor, stayed with me in the dark, closed room for the entire time. I rarely get that level of supervision during an episode.

Sat in the treatment room for 30 minutes more to make sure there would be no mo rebound spikes.

Sat in the lobby for over another hour trying to stabilize to drive home, nauseous, weak, exhausted, pained. Thank God for a little HGTV on the monitors!

Cancelled plans to grocery shop. Gently drove home with a bad neck headache, etc.

I reek like cheap fragrance from that place. Time for a shower and as much sleep as possible whilst nursing the cold I am catching from my beloved Steve.

Wondering if my reaction was worse this time because the injection was 6 weeks late. (Delays also can increase the risk of fracture.) I worked really hard to get this done on time but it is the insurance company who literally “calls the shots.” Glory be, I will be doing this again in 6 months!

Let there be no mistake: if I did not have my faith in the Lord, Jesus Christ I would have given up by now! He sees us on our bed of sickness and weeps for our suffering. Always remember that our God reigns and I continue to trust Him. His mercy and grace, sustaining power is REAL. I lay down my sword and let my God fight for me. Lord willing, this 7 years of hell on earth will end; even if it doesn’t end I trust in the hope of eternity when all will be made right and good. Lord help me to be faithful in this difficult calling and thank you for your promise of restoration, of Your blessing one day. To God be the glory.

Gentle Reader, He will meet you where you are as well and carry you if necessary. Lay down your sword and let Him be your tough guy! Believe this day!

Just Julie

God gave me you

Nor ordinary Christmas we had this day

Sleeping in then slowly moving into life out of necessity more than design.

Broccoli for my breakfast and handfuls of granola for my man

Brought us to our traditional reading of Isaiah before revealing our worldly gifts for I and you.

Who paddles a new long board down the hallway

But two middle-aged lovers holding onto our respective gusto of life?

A rest time had to follow for me again

Not as unusual as the waking episodes that have returned changing my hopes for the day.

Perhaps we would visit or do something fun

Yet return to my bed of sickness I did go for a most unfortunate interlude.

When your husband holds you from joy to sorrow

The same day seems surreal: later he feeds you medicine whilst you seize.

Siiiiiigh. Not that old tune returneth even today

For chronic illness ne’er takes a holiday when you want it to my dear.

This did not matter to you: your love never fades

And my greatest gift revealed its beauty the ten thousandth time: it’s you!

I could never conceive of this way that you have

To give beyond your self with a gentle spirit, still manly all the same.

You spoke only of my rest to your family on the phone

Preserving my dignity when I could barely feed myself with fingers weary from the beating moments before.

Yours is a love from the Father, the Son all in One

The kind that sustains you through trials when Jesus comes near with skin on.

He made you for me oh I am the blessed one

I pray he loves you back tenfold for the task of loving me well done today my love.

An Involuntary Adventure into a Type of Retirement

Cara Brown, BMR (OT), MSc* recently studied the role of occupational therapy practitioners in enhancing the quality of life for people in work-cessation transitions.  She was particularly interested in folks like me who made this transition when not of traditional retirement age.  Although I am still not convinced that my working days are over, I felt compelled to introduce my own involuntary adventure into a “type” of retirement.  My letter follows:

Thank you for your recent article in AJOT on Expanding the Occupational Therapy Role to Support Transitions from Work to Retirement for People with Progressive Health Conditions.**  I found it useful and respectful of persons facing both situations in life.  There may be another category to consider:  those with sudden loss of work roles who enter into “retirement.”

I am an Occupational Therapist who worked over 30 years before entering into this latter category within one night:  October 11, 2011!  I continued to work part time for a short time then decreased my hours to a few home health visits per week.  When it became clear that the onset of a serious illness made it a struggle to focus on the needs of my patients and direct the care of our Occupational Therapy Assistants, I had to stop working altogether.  My last day of paid employment was February 2, 2012.  I spent the next 2 years being my own OT by researching my condition and seeking various medical and alternative health interventions.  Energy conservation and work simplification were my way of life.  Returning to work was always my intention.

It is now 7 years since the onset of a biotoxin illness and numerous other medical conditions that continue to restrict my ability to function.  It took me those first 2 years to realize that the daily convulsive episodes and other illness factors were not going away any time soon; just the orthopedic injuries and deconditioning made it difficult to care for my activities of daily living.  Several times per week I needed to be carried to the bathroom, assisted with bathing after the worst of those episodes.  I developed, by the grace of God, dozens of new coping strategies (e.g. making my breakfast the night before and putting it bedside in a lunch bag in case I couldn’t get out of bed in the morning).  Still, I missed working.  I started making jewelry in the middle of the night and selling them online to keep my brain stimulated and some adaptive role involvement going since I was up all night long anyways.  It was the only way to avoid more seizure attacks.  My life was upside down in many ways for sure.

It took me weeks not days to eventually sell my jewelry business and start to develop a professional website akin to my occupational therapy practice in home health.  I designed a bathroom safety product and began to develop the concept while networking within every aspect of this new venture hoping it would be a transitional activity  back into practice.  In doing so, I could monitor my activity level, continue to challenge my brain, learn new computer and marketing skills, and get excited that what I had learned when off of work was not “wasted.”  After about a year in this new direction, I had to stop.  Things got even worse before they got better.  The convulsive episodes progressed, aggressive treatment took its toll, and just caring for my basic needs was all I could do.  My spirit was crushed.  That was 2016.  By the end of the year I was hospitalized with shingles.  The stress was unbelievable and my body was breaking down further.  I changed the focus of Two Step Solutions several times; my personal blog (www.justjuliewrites.com) tells the medical and emotional story.  Gee, I did learn how to blog and design simple websites (and helped 2 others with theirs)!

But my personal financial resources in addition to my physical and emotional resources (of which you mention in your article) were gone.  The isolation was staggering even with a plethora of online support groups and a Prayer Group I started with two other largely home-bound gals.  Eventually some specialized care funded, in part by a Go Fund Me campaign and an unexpected tax refund, improved my condition enough to start some volunteer work this past year.  I hoped that the volunteer work could progress to part time employment whether within or outside the field of occupational therapy but later in the Fall my health started to slide again and new medical conditions emerged that required my energies, my attention such as it remained!  I needed to keep things low key despite any “goals” I continued to set every morning, 7 years later.

The underlying message to sharing my story with you is to express the extreme difficulty I had as an Occupational Therapist to go through all of this who not only loved her profession but loved OCCUPATION.  Every day when I got out of bed since college, I set goals.  This continued through my time of disability.  The items on the list got fewer as time went on and the complications, unpredictability of complex illness continued.  I never stopped trying to find solutions for either the medical conditions or functional limitations posed by them.  If I needed to wear a charcoal mask in public to be able to shop at the grocery store then so be it.  If I needed to sit in my vehicle to rest or in the cafe of a store pretending everything was o.k., I did so.  I never felt ashamed to be online instead of in-person meeting people; genuine friendships came from meeting fellow bloggers with whom I have now met or “Skyped.”  

Dear Cara, I hope that you will keep seeking to understand the role of occupation in the lives of person with not only progressive but sudden, serious medical conditions or traumatic accidents.  Perhaps the cancer literature has studies to further your investigation as many cancer survivors do return to productive lives.  And note as you go along that there are tens of thousands of folks like me out there just hoping for the opportunity to do the same; we just don’t know if that will be our outcome . . . yet!  In the meantime, I am not giving up.  If I did not have my faith in the Lord, Jesus Christ, I would have done so by now.  Not even my drive for meaningful occupation can come close to keeping me going as knowing my future is secure in eternity because of my faith (regardless of the simplicity, setbacks, and sometimes messiness of my daily life). I submit to you that those facing progressive and sudden loss of primary occupations will require assurance from the Creator God to ultimately succeed in this involuntary type of retirement. 

Godspeed lady in life and in your work,

Julie (MS, OTR/L)

Advanced Master Gardener

Editor and Asst Editor of 2 Publications

*Instructor and PhD Candidate, Department of Occupational Therapy, College of Rehabilitation Sciences, University of Manitoba, Winnipeg, Manitoba, Canada

**American Journal of Occupational Therapy, November/December 2018, Vol 72/No 6, p 347010

Twas the morn of endo

Twas the morning of endo

And all through the house

Not a creature was stirring

Not even a louse.

The kind buried deep inside

The caverns of thy bowel

Who knows what’s it’s name

To be extricated via trowel.

I digress to my gardening

Terms instead of “incision”

For to bear more pain, discomfort

Is not something I can envision.

So to sleep, aye to dream

Via chemistry or exhaustion lo

We soon will have answers

Perhaps by time of ho, ho, ho!

Will this be a blessing

In disguise as gone before

Suffering giving birth to hope

We shall pray as inside goes the scope.

For H. Pylori messes the axis

Of the gut with the brain

And causes problems like mine:

Seizures on top of stomach pain.

Could this be the work of the Lord,

The prayers at once coming true?

Oh heck at least the deep snooze

Will be sweet on this Tues.