The next day

Getting as much done in a day as I can on good days has been my mantra of late. Make shopping lists organized by store. Prioritize errands and organize them by regions of the moderately-sized city in which we live for best travel efficiency. Put Amazon items on my Wish List for bulk orders about twice per month. Put appointments, key things to do/questions to ask at respective appointments, and errands on the calendar app in my phone so I will always have it with me. Record “to do” items on the calendar as well then just move them to another day when sickness takes over and everything needs to change. Make sure to record the places that I went, dates/duration of major convulsive episodes, start/stopping of new treatments, and aberrations in sleep habits to track this serious illness for trending. Use the note function in the glucose meter when compelled to take blood sugar levels. And stage lists, paperwork/medical orders, supplies, lunch bag, water, etc. by the front door so I don’t forget anything when I can finally get myself out the door. Works for me!

It’s no wonder that I am exhausted after a day with a few appointments and errands completed in this way. Marked fatigue with a difficulty functioning follows even if the first appointment isn’t until after 1:00 pm in the afternoon! Still I would really rather block off parts of days and push through, even if it means sitting in a parking lot somewhere resting between destinations for up to an hour, than to have 1 or 2 commitments every single day of the week. I sit a lot in my truck between destinations: eating a snack, sipping some water, checking my lists or phone calendar, and getting my head together (i.e. if the environment I had just left was ridden with noxious environmental stimuli that is still difficult for my brain to process). All of this completed with some safety measures in place of course.

I figure that I can always rest the next day . . . or the next morning at least. Scheduling my days this way is a form of chronic illness survival, especially when you have to come home, change clothes, shower, and clean everything purchased after every trip. (We still must practice a fair level of extreme avoidance due to my ongoing sensitivities.) Perhaps if I were my own occupational therapist, I might advise a better strategy of energy conservation and pacing. Oh dear, another example of the therapist not following her own advice!

All bets are off as they say, the next day, if there is a major convulsive episode the night beforehand. Appointments get cancelled and re-scheduled. To Do List items get moved to another day. A call is made when I can function, to my hubby-dear to pick up critical items when needed. And if the difficulties last for a few days then I am grateful to be able to use our local grocery store’s shopping and/or delivery services. Sometimes supplements and compounded medications can be sent over in the mail. These are wonderful services that really help on days when I am more home-bound: as recent as 2 weeks ago.

Things are really hard when medical appointments fall two days in a row; these meetings are always stressful for me anyways. Things are equally as hard when illness factors worsen around special occasions and holidays: when things simply cannot be rescheduled. This happened today after a wretched convulsive episode last night. I had planned on preparing a meal and some treats for family members who were visiting and it was all I could do to pray my way through the completion of the project. Gratefully my beloved husband was willing to prepare part of it, but sadly after I awkwardly blurted some speech that was a little too pressured, a little too much reflecting the exhaustion I had not yet yielded to the strength of my Lord’s. I had to apologize. Eventually, I got outside in the milder Winter weather of late and for the first time in the three days that I had hoped to do the same. The Pup and I came home then I finished my tasks (’cause there’s always another thing or two to do before you can sit on the couch for a couple of hours and REST!!!).

Probably a few hours too late to be as effective, I did rest. Even the editing volunteer work on the computer got done. And a whole lot of food got consumed while watching cooking shows on Public Television. (We don’t have cable TV.) Such is life in survival mode I guess. The balancing act begins again tomorrow with a family Christmas gathering at a local cafe. It all reminds me of the Capitol One Bank commercial here in the States where the viking character asks his slain comrade or opponent, “what’s in your wallet?” I always hope that it will be fuller on my next day . . . Tomorrow we shall see! JJ

What’s in Your Wallet?

The times of the day

In my profession of occupational therapy when I specialized in mental health, I often asked my patients to describe a typical day in his or her life.  A practitioner can learn a lot by the presence or absence of structure to one’s routine among other characteristics.  Someone who is depressed, for example, usually starts the day later with a disrupted sleep/wake cycle and has difficulty keeping a meaningful routine.  The days often lack variety, physical activity, creative pursuits/hobbies, social activities, appropriate self care, and regular breaks (for sleep and relaxation).  This can lead to a lack of satisfaction with how a person spends his or her time, an altered sense of identity in the absence of meaningful roles with which to identify, and can even erode the structure needed for at least part of the day that is needed to manage everything from daily habits (self care routines, for example) to emergencies.  The person spends an extra amount of energy just getting through the day and the day lacks enjoyment as well.  A person with an anxiety disorder or an addiction often presents with a completely opposite activity schedule generally characterized by chaos!  Perhaps the mental health issues came first?  Or was it the challenge of achieving a balanced lifestyle in one’s living dysfunctional environment that eventually compounded the issues?  It was my job to figure out the answer these questions and to design an occupational therapy treatment plan accordingly.

I have written on the topic of time management before but not within this context.  And not this personally.  I’ll leave out the assessment forms, graphs, charts, comparison tables, high math, and excruciating detail that would afford me a truly cathartic experience but provide you with a very boring blog post!  Perhaps this summary will be more meaningful than a formal occupational therapy evaluation?

This is what it is like to center one’s life around recovering from a serious illness.

Trying to get enough sleep to function:                   10 hours per day

This includes time that feels wasted trying to fall asleep, waking and go-to-sleep convulsive episodes, recovery time from the latter of those two, ruminating if I should take nap or not during the daytime (increase the hours if I am too chilled/sick to make a decision), waking up in the middle of the night to use the bathroom, additional episodes trying to go back to sleep after getting up, waking up when my beloved is snoring post exhaustion from caring for me, more additional episodes trying to go back to sleep, bedtime preparations (donning the blue light-blocking glasses to foster melatonin production, experimenting with bedtime supplements, arranging pillows and other positioning devices to minimize pain, pre-heating the mattress pad heater to minimize the shock of cold sheets that can trigger seizure attacks), preparing my emergency “lunch” bag of waking supplements/water/snack (to manage blood sugar drops, dehydration, and remedies that sometimes help), struggles to enjoy nighttime snuggles with my beloved husband until the episodes start, and most definitely:  talking to Jesus!

Medical appointments and treatments:                   3.5 hours averaged per day across the week

Medical activities include appointments with my Family Practice Physician/Chiropractor, other Doctors and professionals, IV antibiotic treatments at the hospital 3x/week and recovery time before I can go home, transit time, scheduling, communication (phone, internet, text, and messaging), coordination of transportation when needed, various lab test procedures, detox treatments, pain management-related services, and preparing all food/records/water/supplements/detox materials needed for each appointment.  “Treatments” also include various methods of detox; foot baths; salt/mineral baths; skin brushing; liposomal, topical and oral supplements; updating my daily treatment log; medical filing/billing; special nebulized and dissolved supplements; and an occasional use of essential oils.  (For the past month I have had an average of 7 medical appointments per week!  Eeeek!)

Food and nutrition                                                              3.5 hours per day

Includes making dinner and lunches for my husband daily; making separate, special diet for myself every meal (!); shopping/ordering/freezing/processing groceries from 7 or more sources; planning (research and list-making); portioning-and-freezing (since no cooked food can be stored for more than 24 hours); recipe conversions/managing recipes; updating quick reference sheets of current protocols to keep myself sane and moving forward; and symptomatic adjustments as necessary.

Research and learning                                                     1.5 hours per day

Online medical research dominates my thirst for both information and recovery.  I also include here the review of professional literature and various publications, blogging about various health topics at http://www.justjuliewrites.com, and the investigation of various treatment approaches and providers via a variety of outlets including social media.

Socialization                                                                          2 hours per day

Whether connecting with my really smart and beloved spouse (Steve), texting/messaging/emailing friends, talking with friends or family on the phone, sending someone a card, or the rare chance I get to meet with someone in person, socialization is a highlight of each day!  Skyping with a couple of gals regularly for prayer, scripture, some laughs and tears has become a treasure!  Social isolation plagued me for about 3 years of these past four years of illness when I had to stop everything:  Bible studies, church activities, womens’ retreats, visiting, most travel (when all of our family is out of State), etc.  For a long time my most regular communication outside of our home was largely limited to superficial chats on Facebook!  Many people have left my life . . .  Thank the Lord for those faceless acquaintances on Facebook who were there when I was awake in the middle of the night!

Christ-centered activities                                                  1 hour per day

Here’s another improvement in consistency that includes listening to our pastor’s messages online (since I cannot be in the building due to sensitivities), reading my Bible, prayer, some blogging, and the reading of inspirational Christian publications (ministry newsletters, etc.)

Extreme avoidance activities                                           1 hour per day

Extra loads of laundry, additional cleaning, wiping surfaces with a diluted ammonia solution, management of various masks, preparation of barriers to minimize exposures in public places, nasal washes, and a myriad of other activities not reflected above.

Physical activity                                                                  .75 hours per day

This is the newest addition to my daily routine and comes in the form of more regular housework, walking our dog once per week, 10 minutes on a stationary bike once per week, and some gardening.  This figure is divided by the total over 7 days:  lately I can move around a little longer about 3 days per week for more than a few minutes in a row, yeah God!

Self care                                                                                   .5 hours per day

The time spent caring for myself has only recently increased to improve my appearance sometimes.  It feels good.

Recreational and Creative Endeavors                          .25 hours per day

Herein lies my greatest weakness and greatest area of improvement since starting treatment for chronic Lyme disease.  Until now there hasn’t been much fun:  sewing was limited to mending (!); I couldn’t tolerate listening to music, was too sick for kayaking with Steve (my River Bear), and reading consisted only of my Fine Gardening magazine, my hubby’s war-hero novel, and a few monthly local gardening newsletters.  I sold my jewelry business last Fall and my creative juices stopped as the illness got worse.  Maybe this summer I will actually be able to work in the public garden for which I have volunteered?  Stay tuned!  Things are looking up!  This past week I was able to work in our own garden for 3 hours:  a very physical activity as well as something that I love!

So putting on my occupational therapy hat for a moment here is my brief O.T. Assessment:

The loose schemata above reveals my obvious need for more physical, non-medical self care, in-person social, and recreational/creative activities to achieve a balanced lifestyle.  Incorporating other people into the ones that I am able to pursue will probably make everything more fun and meaningful in addition to increasing social time.  Success will depend upon the ability to avoid noxious exposures until my reactivity goes down; gratefully we are entering into the warmer months here in the Midwest so doing things outside is more possible.  As I eventually spend less time in medical and medical research activities, I hope to pursue more of a primary occupational role either by developing my Two Step Solutions business or returning to traditional employment in a suitable environment.  Volunteer work perhaps at our local Extension Office may also increase.  Keeping my occupational therapy license current, continuing to learn, developing some internet and e-commerce skills, and writing, Lord willing, are strengths that may add to the possibilities without too much additional retraining.

****************

I am grateful to my fellow sojourners who have kept me sane when things have been out of whack! I look forward to finding a way to give back to them and others; perhaps this would be by sharing how the Lord crafted this story or simply living a meaningful life after serious illness.  I will definitely take the time I need to make a good transition knowing that there will be some good days and some that are less so.

Overall, can you hear the hope in my voice, Gentle Reader?  Yup.  Lord willing, I am getting well!  JJ

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

The liver that got away

Roger looked more like a tall, lanky college student than a young adult with schizophrenia.  He was also smart:  well-studied as if to be a medical school student long before the days where WebMD could make the rest of us stand out from our peers on a particular topic of interest.  There was one problem with Roger’s course of study, however.  I met him shortly after what could have been his second fatal mistake.

Roger believed that removal of his liver would cure his schizophrenia.  Yes, truly, and he would talk about it with a straight face in earnest to his psychiatrist.  Roger had poured over medical books, secured all the tools and supplies of a typical surgical suite, and attempted a procedure at home in the past.  When he could not control the bleeding at some point during the procedure he called the paramedics and was rushed to a local hospital.  They patched him up and transferred him to the mental health unit where he stayed until his psychiatric medication could be “adjusted.”

Within a short time after discharge Roger re-doubled his efforts.  He gathered more supplies for a second attempt at a total liver resection.  Somehow he never read that the liver is a vital organ and that he would die if he ever succeeded.  And who knows where he found sterile drapings, forceps, lancets, and such in the days long before Amazon and Medline?  What he did not expect the second time was the intolerable pain he would experience as he got deeper into his surgery.  He was alone and got scared.  Again he called the paramedics, was hospitalized, and landed on the mental health unit.

I worked as an occupational therapist on that unit with the even lower functioning clients than Roger.  While he was not one of my patients, his notoriety was the talk of the nursing station.  What incredible bravery it would take to operate on oneself with what, a handheld mirror?  I mean, how exactly did he do it?  I think I recall that he was discharged to a residential facility after his hospital stay in an effort to preserve his life lest he make a third attempt.  The delusion that excision of his liver could cure his mental illness was simply too strong to believe that he would ever give up his theory until he died trying to make it so.

And so here I find myself four days before my own surgical procedure, banking on a theory that excision of two teeth will save my own life.  Have I too succumbed to the “Roger effect?”  When contrasted to sick thinking, we all like to think that ours is different.  After all, I have done my research and can find clinical and anecdotal evidence that what I have asked an oral surgeon to do will cure the worst of my ills.  Dr. R doesn’t agree with my suppositions (a biologic dentist did!) yet is willing to proceed to diminish years of dental pain AND after having required extraordinary precautionary measures!  Lord willing all will be completed on Thursday, March 26th:  my spirit will no longer be crushed with the virtual hell that has left me bedridden most days.  (See this blog for details: https://justjuliewrites.com/2015/03/01/only-my-potato-chips-remain-crushed-today/)

Looking back to my days working in mental health I realized that I have come a long way in my view of the world.  Today I am more willing to ask the tough questions of life than in the past.  I see that I am not so different from many of the patients who landed in a “psych ward.”  By the grace of God I did not have to be admitted or committed when my despair exceeded my ability to cope.  Somehow the Lord provided the hope, the help, the peace to carry on until the day when the pain was no longer unbearable.  Gratefully, much emotional pain has left my life for good.  Much joy has taken it’s place even in the face of this horrible illness.  My internal joy is no longer measured by my circumstances; He has allowed me to overcome immeasurable desperation.  I believe that things will begin to turnaround this week.  This week people!

If he is still alive today, I do hope that Roger has found some peace with his struggles.  Wherever you are today dear one, I pray these words from the Lord for you and your loved ones.  Sometimes letting go of that one thing that got away in our lives is the very thing that brings us to all that we seek:  the joy that passes all understanding.

John 16:33 (NIV)

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

John 16.33

And then I got up

It was the most horrific of reactions:  writhing and such.

Even our pup could not make guttural sounds like me in my muck.

Earlier I sensed a reaction soon was a’comin’ . . .

And lo on the way home the tics started showin.’

So we showered once home, throwing our clothes in the wash

In case you think romance followed I’ll tell ya that was ‘nash —

Not the way it came down I say as I leaped into bed

Barely dried off and with a wet towel flung from my head.

An hour many would not survive followed me in there

I marveled as my lungs, heart, and mind would again persevere.

My beloved raised me in his arms to feed me some water

Then with more wimpers and smaller jolts he sensed the cause of the matter:

An older building, became soiled with everything one could imagine

‘Twas cosmetically upgraded with bright lights and smiles on everyone.

It was hard to tell during a visit as important as this

That there would be hell to pay later for pursuing a visit.

But that’s the way it goes when your brother finally gets the care he needs

In a 4-star nursing home upgraded from one he survived where they could subtract at least 3.

We chatted, we laughed and the pupster Elle provided all the charm

The rekindling of family love, fulfilled with treats from my oven still warm.

Then came the gift from my bro when Mike let me play O.T.

And minister to his contracted frame, providing hope to both him and me.

My skills were still there and his muscle memory someday could return

Lord willing we shall see His purpose and be grateful for this wild ‘journ.

So how can I complain that some new treatment of my own did not hold

When I just started 2 days ago then walked into a fiery test a bit too bold.

‘Cause long after the last jolt, the last choreathetoid seize

I was able to get up and make myself something to eat.

Now sitting here listening to my slumbering beloved who works in the ‘morn

I am grateful for so much although tonight so much is yet unknown.

“When will this crap end?” I ask myself and the darkened night air

“In just a little while,” responds the Lover of my soul Who holds my life in His care.

So even in this I will trust in the God Who has promised

That all things will be good.  Get back to bed.  Good golly it’s almost (morning)!

JJ

Mike and Julie at Medilodge in Michigan
Mike and Julie at Medilodge in Michigan