I’m still here

A brief update:

A second trip is now behind me to see my Craniomandibular Specialist in a southern state and the problems plaguing me for 6 1/2 long years are significantly less and yet my progress has plateaued.  Maybe it’s still the fatigue of travelling alone for the first time in 11 years?  Holy cow, I did it!  And ugh too.  It was hard.   Regrouping and resting now, changing up a few things, and I am noticing that those changes are already helping, for example, to  reduce the daily headaches to a trace level.  Amazing!

I am tempted to be discouraged about the plateau in progress and some setbacks but I will choose not to be so.  Both happen in the jagged line of recovery from serious illness.

Life goes on and the care of a family member in that same southern state began before the first medical trip.  Looks like the Lord had more planned than we originally thought when my hubby and I took a leap of faith to seek treatment 1,000 miles away from Indiana!  We are now preparing to welcome my Aunt into our home for 2 months this summer after many hours of preparation, work, and communication with multiple parties.  There is much to do!

Seems that the Lord wants me to keep moving forward as he has created a new role for me with increasing responsibilities:  caregiver.  I never thought that it would be harder to care for one tiny lady than the TWENTY I served in a day in my professional role as an Occupational Therapist.  Right now it is!

My Doctor’s office cancelling 7 medical appointments already this year due to chaotic scheduling issues confirmed my pursuit of a new integrative medicine specialist.  My Doc is upset and I am proceeding to transition some of my care to her anyways.  The change is refreshing and creates hope in some areas not addressed of late.

Steve and I have several decisions to make should my family member decide to move in with us later this year after her summer visit.  Some parts of our life could accommodate her easily, others not so much.  We will have some financial decisions to make involving vehicles, housing, and several lifestyle choices.  Could be good?  We are exploring many options and leaning on the Lord as we go . . .

I am a bit overwhelmed with the new modalities that have come since pursuing specialized Temporal Mandibular Disorder treatment, from application of a TENS unit to switching out dental appliances every time I eat or sleep.  Wonder where I have been instead of writing updates on the Hope Beyond blog?  I am still here, flossing my teeth 4 times per day!  Spitting mouthwash into a baggie in my truck after eating between appointments when away from home is not that unusual for me now . . . from the back of the parking lot where no one can see me of course!  Oh my!

The biggest change of late is having a bit more energy and mental capacity to do a little more a few days per week.  I am exceedingly grateful for this.  Thank you Lord!  We anticipate a lot of changes, projects, and the need for both physical and mental stamina this coming year and looks like it is coming little by little.   I hope the finances for everything will follow as my Go Fund Me campaign has also plateaued!  We will figure it out, so no worries.  The first of the two medical trips is now covered, gratefully.  God is good and the Great Provider has always cared for our needs.  I can see a possibility of working some within a year a so depending upon the needs of our “new” family member; she may move in with us permanently or choose to live closer to her adult children in Michigan.  Just not sure yet.

I am tired.  Healing takes sooooo much energy from healthy food and rest, good supplements, time with the Lord, and restoration activities with my beloved Stevers.  Sunday was my birthday so we did that last one.  A simple day was a great gift with my bestest buddy.  I love him so much.  I am so very glad that you are still here too.  I could never have made it today without you Babe.  Thank you Jesus for Steve.  Please bless him this week and encourage him as he works so hard for both of us.  Infuse him with your Spirit to lead us through this maze of life in which we bumble along.  Help me to love him, respect him better and better too.

woman, birthday cake, birthday, carrot cake, celebration, lunch, with husband, Christian, woman kissing cake, table by the window, lake view
Carrot cake was my birthday treat at the Oakwood Resort on Lake Wauwasee

I know that the Lord has gone before me and been with me, drawing me to Himself and bringing me to the moments He planned for me yesterday, today, and tomorrow.  I lay everything named here in your mighty hands as I prepare to go to sleep.  I know that You are still here too.

And on that promise all of us here may rest.  You too.  Godspeed Gentle Reader, JJ

 

The Awakening

No plant reacts instantly to a brief change in conditions. But a change that persists is an invitation to wake up.  (From the Dirt Simple blog.)

Lately I am finding myself in a place in my world that brings me to a humbling yet screeching halt.  I ask:  what has happened to the me I once knew and where the heck did I land?  The Lord knows the journey that has transpired; the witnesses have varying accounts of this or that as well.  But it is the markers in time, the events out of the ordinary that bring the changes to light, that clarify what is actually seen.  Let’s see if I can explain a bit more about what is going on over here as one of those episodes hit me hard . . .

Three days ago the daily seizure attacks that I have suffered for 5 years ramped up to over SIX HOURS PER DAY.  One day these were all in a row, virtually without ceasing until the wee hours of the morning.  The next day I got a divided dose of 3 1/2 hours in the morning then an encore of SIX MORE HOURS in the evening!  I cannot even describe to you the mental and physical anguish this brings.  Time stops.  A single breath, one then the next, is the only measure in my mind of the clock of life ticking forward.  Difficult decisions got made between my beloved and I resulting in his cancelled trip getting replaced with the sights and sounds of another hospital emergency room.  The drug they gave me helped.  Miraculously, the convulsive spikes are but a blip here and there for now.

I have had over a day now to contemplate what life might be like to be normal again.  Indeed the pain has gone down some, the brain fog got less misty, and my ability to move improved.  So I completed a small garden project yesterday and walked our dog this evening.  I think that the ER Doctors who have told me that this illness isn’t biological are dead wrong.  Stop the seizing and I don’t need a psychiatrist to tell me to get back into life.  I don’t need convincing.  It just happens! 

There is much to figure out right now.  Will I get to work on more treatment like taking down viral infections?  How long will I stay on the new medication that could hurt me if it was too long?  What will I really do with my life should this process of healing continue?  I am hopeful again and that is good.  Alas it is poetic that these changes should occur as the earth warms from the cold of Winter outside.  Unlike the plants that are either remaining dormant out there or are testing their new growth with some surges in our Spring-like weather lately, I will wait to wake up all the way.  In the meantime maybe I can do some good with this wee bit o’ energy.  After all, there is no rushing a beautiful awakening to a new life.

Five years is a long time to have been asleep.

I bought a new truck like my Dad’s just 5 days before a kayaking trip changed my life forever.  I got sick from the water.  I don’t know why I told you that.  It’s been a long detour.  Now things are changing wildly.  Maybe the new beginning will need to involve a little road trip in my sweet ride?  To the nursery just out of town of course.  They sell bags of shredded pine bark compost that should fortify our garden vegetable beds nicely.

See what I mean?  It’s already happening . . .

JJ

garden dog, German shepherd, grass, sleeping, pet, pup, sneaky, dog
Elle awaits the awakening . . .

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

It’s only a matter of time

hellLet’s see.  If I had a timer going for a few events these past few days, this is how I would measure up:

  • Friday:  Made dinner.  1 1/2 hours.
  • Saturday:  Unloaded compost with hubby and tinkered with a few garden tasks.  Made dinner.  3 hours.
  • Sunday:  Sat outside.  Posted some new jewelry on Etsy and surfed the net.  All day.

The rest of the time was characterized by self care, supreme sickness and recovery.  Who knew that seizure attack episodes on Friday and Saturday could take on a violent, writhing character for 10 minutes straight of unbelievable hell?  I am so very glad that the other episode of 2 hours of non-stop seizing plus aftermath would not take me to the emergency room in the middle of the night, early Saturday morning.  Alas, my beloved got a few hours of sleep.  But today it’s just sad that I missed my husband’s shooting class.  All of this is a really big bite in the shorts, I tell ya.

As it turns out the most difficult issue for me to face during these last almost 3 years of illness is a “waste of time.”  I value the meaningful use of my time more than money, people, places, and things.  It’s just how I am wired and I don’t want to spend a 60-minute counseling session trying to figure out WHY!  This aspect of illness really cuts to the core of my being.  I will, however, submit my will to the wisdom of my Heavenly Father.  Perhaps it is a supreme opportunity to soften this issue of time measuring value for me.  Value is not measured by time in the eyes of the Lord.  Value is measured by simply being.  (Now that’s another topic for another time!)  Maybe today I should explore the topic of time in a walk through His Word?

God created time.  Genesis 1:14  14 And God said, “Let there be lights in the vault of the sky to separate the day from the night, and let them serve as signs to mark sacred times, and days and years,

Time will end, thereby increasing its value.  Revelation 10:6  King James Version (KJV) And sware by him that liveth for ever and ever, who created heaven, and the things that therein are, and the earth, and the things that therein are, and the sea, and the things which are therein, that there should be time no longer:

There is a time for everything, good and bad.  Ecclesiastes 3:1  There is a time for everything, and a season for every activity under the heavens:

Time is measured by God.  All things happen in His appointed time.  We are to wait patiently for His divine timing of both the events of our lives and the events prophesized in the Bible.  Daniel 12And I heard the man clothed in linen, which was upon the waters of the river, when he held up his right hand and his left hand unto heaven, and sware by him that liveth for ever that it shall be for a time, times, and an half; and when he shall have accomplished to scatter the power of the holy people, all these things shall be finished.And I heard, but I understood not: then said I, O my Lord, what shall be the end of these things?

And he said, Go thy way, Daniel: for the words are closed up and sealed till the time of the end.

10 Many shall be purified, and made white, and tried; but the wicked shall do wickedly: and none of the wicked shall understand; but the wise shall understand.

11 And from the time that the daily sacrifice shall be taken away, and the abomination that maketh desolate set up, there shall be a thousand two hundred and ninety days.

12 Blessed is he that waiteth, and cometh to the thousand three hundred and five and thirty days.

13 But go thou thy way till the end be: for thou shalt rest, and stand in thy lot at the end of the days.

We have no idea when things will really happen or not happen.  Better to keep our eyes fixed on the Lord our God.  The most important event is His return in glory.  Mark 1332 “But about that day or hour no one knows, not even the angels in heaven, nor the Son, but only the Father. 33 Be on guard! Be alert! You do not know when that time will come. 34 It’s like a man going away: He leaves his house and puts his servants in charge, each with their assigned task, and tells the one at the door to keep watch.35 “Therefore keep watch because you do not know when the owner of the house will come back—whether in the evening, or at midnight, or when the rooster crows, or at dawn. 36 If he comes suddenly, do not let him find you sleeping. 37 What I say to you, I say to everyone: ‘Watch!’”

God ordains certain tasks in the lives of believers at certain times until our days are over.  When in doubt we are to fast and pray that the Holy Spirit may counsel us, lead us, comfort us through our days.  Esther Chapter 4.  14 For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father’s family will perish. And who knows but that you have come to your royal position for such a time as this?”15 Then Esther sent this reply to Mordecai: 16 “Go, gather together all the Jews who are in Susa, and fast for me. Do not eat or drink for three days, night or day. I and my attendants will fast as you do. When this is done, I will go to the king, even though it is against the law. And if I perish, I perish.”

Our time is to be spent gaining wisdom among other tasks He ordains for us to do.  Psalm 90:12  12 Teach us to number our days, that we may gain a heart of wisdom

We are to spend our time in meditation on the things that matter most.  This requires  inactivity!  Philippians 4:8  Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

Time spent with the Lord is infinitely multiplied as He is timeless.  2 Peter 3:8  But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day.

God orders the steps, the events of our lives for His divine purposes.  They are not random.  They are not without meaning or purpose.  Proverbs 16  In their hearts humans plan their course, but the Lord establishes their steps. 

His plans include blessing, a future and a hope.  In this promise we can find rest.  Jeremiah 29.  11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

And yet we are to live fully in the moment and consider the future according to His will.  James 4  13 Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” 14 Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15 Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

Not only are the events and timing of our lives planned as part of His will.  They are ordained for His glory!  Ephesians 1.  11 In him we were also chosen, having been predestined according to the plan of him who works out everything in conformity with the purpose of his will, 12 in order that we, who were the first to put our hope in Christ, might be for the praise of his glory.

 O.k.  I think I’m getting a better perspective on things!  Not only does my Lord and Savior care for all of the details of my life (Psalm 139), He carefully constructs the timing of everything as well.  When I am up late at night writing this blog I remind myself that it is an honor when someone reads what I have written.  You, Gentle Reader, have chosen to spend some of your valuable time with me.  And if I have succeeded at any level to bring each of us closer to the throne of grace, the love of Jesus Christ, well that is time well spent indeed for both of us.  To Him be the glory.  May He mark our time for His purposes.  After all, it’s only a matter of time.  There is so very much more . . .  JJ

heaven