He is out of the woods

As soon as we made it across the States to his hospital bed in that massive place

I was overcome with the smell of sickness, gloom, and death beeping along the layers of sheets and tubes.

Therein lain my dear brother, eyes swollen shut and breathing guided by the lifeline protruding from his mouth. Are you in there Mike?

Four days he would sleep, barely stirring when painful procedures ensued . . . then we knew: he is waking up! And out came the feeding tube with one sharp yank. Ouch!

It wasn’t long before he was demanding this and that, or so I am told, as the old cravings for smokes also awakened in his stiff, ace-wrapped frame. Let’s hope “the patch” holds him over.

I can hope for better days once he starts to move a little more yet I know better than that. He and his love/caregiver will have to figure out how to make it past this first major crisis since his stroke 6 years ago. Yet there were others with seizures from meds prescribed amiss.

Long term care sounds better to me but I am not the one in the driver’s seat even as my beloved and I returned home from our whirlwind Sunday visit. So glad there will be more days together, to come.

I saw her love for him and that was enough for me to let the “big sister syndrome” go. To just listen will be my way of showing support when she calls me now and then, returns my own.

Dear Mike, do find meaning in this broken phase of life: something to give yourself to and to care for the vessel albeit wrecked with pain and parts that don’t work right at all. Our Lord will sustain you and treasure you through the many hours alone when your body begins to spasm or shake. This I do know. He is there both inside and out of the woods you know . . .

I love you Mike. JJ

UPDATE: Mike woke up about 4 days later and was discharged home another 3 days thereafter, to be with his fiance. He was shaken up from not remembering those early days in the ICU yet is seeking a renewed direction for his life. This is good! Oh, and his insurance issues giving rise to medication issues and this medical crisis are largely resolved as well. Praise the Lord!

New Year, New Direction

Like many times before in January these past 7 years, I am seeking a new direction for my medical care as a serious illness continues. A recent autoimmune blood test found antibodies for a particular type of central nervous system disease. So of course we are off now pursuing the next big thing! Here’s an initial brain dump on the subject (absolutely no pun intended!).

Autoimmune disease (AD) is a disease in which the body’s immune system attacks healthy cells. There are up to 100 different types of AD (depending upon which resource you use) and 3 triggers that I can discern that initiate the onset of symptoms:

  • Gene expression that gets turned on. This is where your have genetic markers for a particular condition coming from somewhere in your family tree that starts to express itself as active disease when triggered by stress, infection, toxicity, or some traumatic event.
  • Infection by bacteria, fungus, or viral agents. This appears to apply when the infection is severe or chronic.
  • Cancer. This may be a chicken-or-egg type of dynamic where a patient may never know what came first.

Docs have diagnosed me with a few conditions in the past that may be considered autoimmune disease. But it wasn’t until my Doc finally decided to start testing me for AD antibodies (Cyrex Array #7) that something concrete was identified and it is serious. The condition mimics a neurological disease that my Father had. The biotoxin illness that triggered my 7 years of chronic illness (beginning the same year in which he passed away, interestingly) and subsequent infections may also contribute to my situation. Thankfully, no cancer has been identified so we will stick with the first 2 triggers as entering me into the AD phase of my long term treatment plan.

So I started researching as usual and discovered two primary approaches to neurological disease in general: 1) manage the symptoms of a debilitating, degenerating course, or 2) treat it with immunotherapy and medications that have the potential to reverse its course when there is an AD component. My Doc suggested continuing various supplements and physical therapy. A second Functional Medicine Doc suggested a “functional medicine chiropractor” and a neurologist who specializes in Parkinson’s Disease. Of course I will consider these but I am also not going to wait around while my body deteriorates without seeking something more substantial! Fortunately it appears that for me, there may be medical treatment options including what is called IVIg that have the potential to REVERSE THE EPISODES THAT APPEAR SEIZURE-LIKE, VIRTUALLY EVERY DAY FOR NEARLY 7 YEARS!  Yes, let’s do that!

Yesterday I set up an account and submitted a brief case history for review by the Autoimmune Clinic at the Mayo Clinic in Rochester, Minnesota. Their neurologists specialize in neuroimmunology, participate in the latest research, and are willing to initiate trials of immunotherapies and medications to help their patients. I had contacted a couple of researchers directly, consulted the leader of a regional support group, watched lectures and interviews, and reviewed the literature on the factors relevant to my case. “Time is brain” and “time is cerebellum” appeared several times in the studies, suggesting not waiting around for something to happen. Overall, this field of study is very complex; I believe that I understand the main principles enough to share with my beloved Stevers and, as one accord, proceed in this new direction in my medical care.

As with anything new and complicated, there are many unknowns ahead of us. Will the neurologists accept my case and when will I be able to schedule my consultation, testing, treatment? How much, if any, will my insurance cover? How will I tolerate a lumbar puncture procedure likely needed for comprehensive diagnostic work-up even if administered under anesthesia? Will we be able to pay for the travel and out-of-pocket expenses that, for immunotherapy, could exceed tens of thousands of dollars? Can any of the treatment, if indicated, be completed locally and how many times will I need to return to Mayo Clinic (a full day of driving away from home)? In the winter when it’s too cold to camp, will I be able to tolerate staying in a hotel often laden with fragrances that trigger convulsive episodes? Will our aging and endearing pup Elle be able to travel and stay with us?

You know we are praying about all of these questions already! I am a bit frightened by the diagnosis I have been given, having worked with persons with movement disorders during my career as an Occupational Therapist. Yet I am also in awe that this information came NOW and not 3 years ago when I first considered a consultation at Mayo Clinic. We have learned so much since then, ruled out other conditions that don’t apply to me, treated conditions that put me in a better position to benefit from an Autoimmune Clinic, confirmed that this illness is not psychiatric, and know the process of travelling for medical care (as in my craniomandibular specialist whose care continues).

I feel like the expression on Elle’s face in this picture. Three paws in view and one paw under the rug with the unknowns lurking underneath there as well. Will there be Rubber Duckies or sweetness from the Lord to lighten this journey? Surely. Each phase of this time in my life has brought blessing with the hardships. Besides, you know I love road trips with Steve! And Elle!

Hang tight Gentle Reader. We may be headed north really soon! JJ

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

Frequent Flyer Miles

Hospital Christmas Tree, hospital, medical, ID, identification, patient, band

Travel frequently with any major airline and before long you will accumulate Frequent Flyer Miles.  Gather enough points and you can start planning a getaway weekend to someplace warm or maybe remote enough to forget the cares of everyday life.  Oh how I want to cash mine in soon . . .

So I walked into our neighborhood hospital for a test and the gal at the reception desk greeted me by name!  She had my red radiology folder already in-hand, clearly expecting me at any moment (with most of my “HIPPA” paperwork already started!).  Talk about customer service?  Er, no.  More likely it’s a function of my frequent visits to medical practitioners and departments within the past week:  SEVEN OF THEM!

It’s the week before Christmas so I thought I would photograph a few hospital I.D. bands within the bright green branches of a Dwarf Mugo Pine.  Kinda looks pretty, doesn’t it?  Ugh.  I digress. I’m alright, Gentle Reader.  The choking coupled with increased nightly seizures turned out to be symptoms of a sinus infection and all are gradually subsiding with a course of antibiotics.  I’m getting back to baseline.  Too bad they don’t award Frequent Flyer Miles for taking care of yourself or enduring a bumpy flight!

Overall, I am grateful to have these healthcare “destinations” to guide me along my journey towards recovery.  Various medical appointments are my daily occupations of late, mixed in with wrapping a few gifts and trying hard to focus on serving others in this season of giving.   It really does help to put your eyes on the needs of others to help lessen the burden you may be carrying.  I was reminded of this in the middle of this past week, sitting alone in the chapel of our local hospital.  Ever visit one?  They are a sweet oasis when needed.

Thank you my Lord, Jesus Christ, for meeting me there in my own time of need.  So glad you always take a flyer on me when I call . . .  JJ