The day passed with gratitude

Seven years ago this night, I contracted viral hepatitis kayaking in a local reservoir, beginning what has become 7 years of serious illness.  Yet today passed with more of a sense of gratitude than mourning the lost years.  May I share the good things that came from this journey?

  • Learning to blog, beginning in the summer of 2012 and continuing to this day.
  • Wrote and published an eBook:  Hope Beyond Lyme:  The First Year
  • Learning to make macrame jewelry, starting an online and vendor jewelry business when up in the middle of the night and selling the business  2 1/2 years later with a sense of accomplishment, closure.
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Friendship Necklace or Bracelet with Seahorse Charm from Trinity Jewelry by Design

  • Learning about the numerous medical conditions for which I would be tested, ruled-out/diagnosed, treated, and make some level of progress on.
  • Started, developed, and moderate a mercury detox group on Facebook that now contains about 3,000 members and 1 Co-Admin!
  • Meeting some dear friends in the chronic illness community in relationships that 1) began locally and have continued to this day or 2) transformed from online to face-to-face either electronically or in-person.  Love you ladies!
  • Learned how to develop simple websites for e-commerce, blogging, and marketing for myself and others.
  • Supported my husband as best as I could in his distributorship of performance kayaks and gear:  River Bear Racing.
  • Became a Master Gardener and advanced within the ranks with as many in-home projects as those in the community.
  • Became an Assistant Editor of the United States Canoe Association publication called Canoe News under the tutelage of the handsome Editor and husband named Steve!
  • Recently became Editor of Across the Fence for the Purdue Extension Master Gardener program.  This required a crash course in another online program:  Microsoft Sway.

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  • Became a better cook and homemaker/helpmate to my beloved Steve as I have been increasingly able to do so as the years have progressed.
  • Became my own patient advocate, occupational therapist, care coordinator, medical billing and records specialist, and health coach.  Sure, I hired a Naturopath for epigenetic counseling that was beyond my brain fog to understand yet kept in-step with as much of my care as humanly possible:  seeking answers and finding some too.
  • Learned to camp via travel trailer aka our mobile clean room!  We are grateful for the Lord’s provision on this one.
  • Taught myself via online videos to sew upholstery for our patio and the travel trailer.

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  • Learned to grow vegetables and native plants; working on a community rain garden project for the near future.
  • Experimented with a some volunteer work for our community park this Fall that really stretched my abilities and tolerances.
  • Kept my occupational therapy license current with online continuing education, review of pertinent literature, and following the latest issues-and-trends in my profession.
  • Trialed being a caregiver to an elderly family member.  Didn’t succeed yet worked very hard in this role for six months earlier this year.
  • Became a writer!
  • Fell more deeply in love with my intended beloved, Stevers aka River Bear.
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Steve and Julie at the Fish Lake Race, Indiana, July 2018

  • And most importantly, grew into a vital relationship with my heavenly Father, heavenly Husband, and Savior Jesus Christ.  He is my rock now and forevermore!

How did all of this happen when experiencing daily convulsive episodes and its consequences virtually every day for 6 1/2 of these past 7 years?  Well that’s just how good our God is, Gentle Reader.  Little was done in my own strength in the most wretched of months.  The episodes in general aren’t as bad these days as long as I stay away from the worst noxious stimuli to which I am sensitive and plan rest days accordingly.  They aren’t gone yet.  I’ll write more about a recent setback soon.  Gratefully, the reactivity has come down quite a bit; I can see marvelous progress.  Yeah God and praise the Lord for His mercy and grace!

The day passed with gratitude indeed.  JJ

 

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.

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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

You bring me joy

How about playing a little tune while enjoying the view that encourages me these days: my beloved and my garden.  Enjoy!

Song to play:

Pictures from my heart of gratitude.  Thank you Jesus.  You are so good to me.  JJ

My beloved and me at Lakeside Rose Garden, Fort Wayne, Indiana

My beloved and me at Lakeside Rose Garden, Fort Wayne, Indiana

Garden pup:  Elle

Garden pup: Elle

 

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Our first compost pile in what used to be the dog pen.  Sorry Elle!  You'll have to share!

Our first compost pile in what used to be the dog pen. Sorry Elle! You’ll have to share!

 

Lavender in the veggie garden bringing on the bumblebees.  Yes!

Lavender in the veggie garden bringing on the bumblebees. Yes!

Looks like the Knock Out Rose bush is going to make it after all!

Looks like the Knock Out Rose bush is going to make it after all!

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Spring and Fall

DSCF8784My body will tell you tonight:  it’s quite an accomplishment to finish our Spring and Fall yard clean up projects all within 24 hours!  Whaaat?  Such is life these days.  All completed just in time for the long soaking rain storm outside my window as Winter approaches . . . the maiden tulip bulbs are going to be real happy in their new home!

I am exceedingly grateful to be functioning somewhat better despite the ongoing noxious episodes that occur most days.  Then there were two noxious-free “holidays” within the past four days.  THIS IS HUGE GUYS AND GALS!  I haven’t had more than a one-day break per week since living in the hotel at the beginning of the year when we were remediating our home for mold.  Looks like the IV magnesium treatments (counted #20 today) and sugar/sweetener-free cholestyramine are beginning to work a wonder inside of me.  I am grateful and humbled.

Despite all of this good news for some reason I needed to cry a bit today.  This year has been especially traumatic.  When I’m in one of those hour-long to several-hour-long episodes my ability to think and reflect is gone.  My mind is blank.  No processing occurs of what is happening to me.  I have heard patients with dementia describe his or her mind this way.  There just aren’t any thoughts.  Gratefully I do not have dementia.  I often wonder, however, if there will be synaptic damage from the almost 2 years of seizure attacks.  Then again, maybe the neurons just needed a little Spring cleaning, resetting, and the like.  Anyways, I believe that to grieve the loss of my health is, well, healthy.  Perhaps it will pave a comprehensive path to healing?

The end of Psalm 139 reads:

23 Search me, God, and know my heart; test me and know my anxious thoughts.
24 See if there is any offensive way in me, and lead me in the way everlasting.

I have heard an application of this passage that it can describe the need to reflect upon and grieve a past trauma as part of a God-honoring healing process.  The Lord knows me and my circumstances in addition to the outcome.  By opening my mind and heart to His merciful grace under the shadow of His wings, I will find rest.   I have prayed many times to “get” the purpose of all of this suffering and wondered if I was “there yet.”  I asked my husband Steve, my God-honoring spiritual leader, if he thought there was anything I was not seeing.  Was there some sin or character flaw that required repentance?  Steve was gracious when asked these questions.  We both saw the little lessons and unexpected blessings that were the “silver lining” to this illness.  We have not become embittered.  We have drawn even closer together and to Christ.  Whew.  Thankfully.

Blogging started as online journaling and has become so much more. I do hope that my writing will be used for God’s glory and point people who are going through serious trials, to the person of Jesus Christ.   To the Gentle Reader out there, you have also helped me find a plan and a purpose for this time in my life.  The process has become as meaningful as the lessons learned.  One lesson learned yesterday:  don’t leave a wheelbarrow full of mulch out in the yard!  Put it under the covered porch.  Six times it got rained on and rained in.  Geez that was one heavy wheelbarrow!

A little humor helps fer shur.  And my Stevers is a great model of the value of silliness in the middle of the crap-o-la-ski.  (You were missing my Polish, I know, so here ya go!)  Thanks for hanging in there with me.  Wish I could hug ya, eh?  :J