The Day is Never Really Wasted

Missing my Dad.

Closing my online jewelry shop.

Cancelling a dinner invitation for me with new friends.

Spending the morning and evening in bed with complications of illness.

Questioning the utility of a new treatment before it really has begun to make a difference.

Perhaps you can see where I am going with this?  No where productive, positive, encouraging very fast.  These are the kinds of days when I question the value of each breath (that almost stopped twice today).  These are the evenings when I wonder why I try to plan anything away from our home anyways?  These are the days that I cry a little more than usual.  And these days are necessary, really, to grieve and move on.

When I worked as an occupational therapist in rehabilitation, we often told our patients that, “recovery is a jagged line.”  Oh how I have found that to be true these past 3 1/2 years!  Looking back to the beginning and middle of this period of time, there were many times when I am sicker than I am now.  There were many unanswered questions, new treatments to try, expenses that exceeded our income, strains on all of my relationships, and lifestyle changes that seemed too much to bear.  So many questions came to mind as the weeks extended into months and years:

I wondered if I could continue to get to know the gals I’d just met at my church or my husband’s adult children, make any new friends, or succumb to the ill-effects of isolation instead?  How much suffering could my body endure without permanent damage to my brain, neck, back, or other bodily functions when the convulsive episodes were so violent?  Would I embarrass myself in public, get into an accident in a public place, or be found on the floor some evening by my beloved husband (who was already stressed and sleep-deprived)?  Why on earth did I have to endure such hellish nightmares, flashbacks, and heart-wrenching grief at this time in my life when I had worked so hard to become free of so much sorrow in my past?  And most of all, would anything good come from all of this:  would it be wasted time and effort after it was all over?

Some of these questions have been answered by now and some have not . . . yet.  I have made many new friends.  The process of getting to know my hubby’s children has been slower than I would have liked yet it probably is for the better; we are living a long-distance from all four of them which makes everything a little different too.   My mind has actually become clearer with the extreme dietary measures, reduction in mercury toxicity/dental issues, and healing of my gut (since the brain and gut-health are related don’t ya know?).  The physical consequences of illness will require some more treatment soon but at least my weight is stable and the overall deconditioning has still allowed me to perform most of my activities of daily living.  Further, when I felt sick in public or driving down the road, I was always able to rest in my vehicle thus avoiding an incident, gratefully.  These last two are amazing to me:  the Lord’s angels must be protecting me when I am away from home.

Steve and I have found ways to cope with the nightly convulsive episodes, sudden physical collapses that require assistance with my self care, and challenges to our intimate life on occasion.  It helps that Steve is wonderful!  It helps that he relies on the Lord and fellowship with strong believers to see him through this season of our lives together.  His faith strengthens mine too.  Although we can’t be together as much as I would like to, it helps me to know that I can trust him and look to him for spiritual direction, spiritual leadership.  This is God’s plan for the home, for marriage.  And as that design plays out between us, I know that the Lord is strengthening me too.

The Lord has never left me or forsook my faith in Him.  Even in near-death experiences, demonic attacks (and there have been more than I can count), and times of deepest despair, my Jesus has carried me through it all.  The spiritual peace that developed certainly has served to clear my mind, bringing me to a place of clarity I had never seen before I got sick.  Renewal of our minds is a gift and a promise only the Lord can give as we read the Bible.  I am grateful for His work through this process.

I really don’t know if looking at the female hormone/menopausal connection with the onset of seizures (and its related testing and treatments) will be fruitful or not.  Is it catamenial seizures?  I do know that I am probably going to make some more new friends trying to figure it out!  Some more new connections will also be made in the synapses of my brain as I study a whole new body of information.  Letting go of my hobby business today and getting focused on a more professional venture will challenge these new skills, quite possibly moving me from this disabled state to one of productive living.  Oh how I hope so!  This incredible experience has inspired a new product that I invented and eBook that I am writing.  That is cool, eh?  Yeah God!  Perhaps things will come together just as they need to and when the timing is right?  This season of time will have served its purpose; it certainly will not be wasted.  This Father’s Day will just be a microcosm of the larger picture with all of its days, its parts playing a role:  good, bad, and ugly too.

And in the end I know that the good will outweigh the other two.  How compelling of a story would I be able to write if everything was always hunky-dory?  Nope.  It would be boring.  On the stage of life, we are to live fully no matter what happens to us.  We are to live like the sign on the wall of the therapist’s office that I saw when I was searching for meaning in my life at just 24 years old:

Bloom Where You are Planted, trust in the Lord, overcomer, overcoming trials, Christian response to, faith in Christ, hanging tough, Bloom, Christian blog

Yeah.  Evelyn at Catholic Charities had it right.  And the gardener in me wasn’t even awakened yet when I read that banner!  The motto of that poster has encouraged me over and over again, becoming the foundation of my life’s work as an occupational therapist and helping me to re-invent my career a half-dozen times.  As a believer in the Lord, Jesus Christ, I can see that He is the God Who uses all things for His glory.  Someday you and I will get to see how these gnarly threads of our lives have woven together to create a beautiful tapestry that characterizes the life of one surrendered to Christ.  With that hope I can face tomorrow and all that it brings.  With that hope I submit to the will of my Master Gardener, my Lord.

With that hope you can too, Gentle Reader.  Bloom!  With love, 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

 

A Pig for Sale

Only in Indiana.  Or maybe in any other State with farming.  Well that would include all 50 States.  I guess it’s just new to me . . .

The Facebook page for selling stuff in my town had a posting for a pig for sale:  $300 for the live beast.  I actually thought about it for a moment!  The biggest issue would be finding a place to store all of that meat.  Our lil’ freezer just ain’t big enough for my hubby’s ice cream and my bone broth in addition to a virtual bevvy of pork!  Darn.  I’ve been missing BBQ ribs for some time now!

I suppose that someone else with a chest or upright freezer will jump on the offer.  Maybe our neighbor who bought our used freezer will find it in her budget to feast on Porky Pig for the rest of the year?  Or maybe not.  But if she invites us over for some Famous Dave-style ribs I am sure that we would oblige!  We will even bring my Grandma’s famous potato salad.  Yeah I won’t forget the horseradish, pickle relish, and bacon grease (aka “secret ingredients”)!

Porky Pig here.
Porky Pig here.

We live in a time where you can buy and sell just about anything.  With the diversity of our world and our accessibility to most of it via the internet, we can get much of what we want for a price.  Do you want someone to paint your business logo on his hairy belly and sing a song for you?  Just check out the gigs on http://www.fiverr.com and it will be yours for the price of a latte’.  My preference for that one would be “NOPE.”  That is, in the physical realm.  There are other realms for which I would need a song you know.  And tonight my heart realm can’t buy me even a lullaby for peace of mind.  My heart is breaking and there simply is not much I can do about it but pray.

My brother, Mike, whom everyone else calls Michael, continues to live in a wretched inner city nursing home after a serious stroke.  He is four months post-CVA and three months enduring the “3 hots and a cot” provided by a one-star facility.  I flipped when I found out that he had an infectious rash on his hemiplegic hand!  I asked his fiancé and Mike to check for signs of bed bugs and call the State Ombudsman immediately if they found any signs of them.  Mike’s roommate itches too.  Hopefully it will be a case of an allergic reaction to the laundry detergent.  But why would the bumps become infected?  Good golly.  Water (no juice, milk, or coffee) for breakfast, a delayed response for significantly elevated blood pressure, and no follow-up whatsoever on a 6 cm kidney tumor ARE ONLY THE FIRST THREE items in the long list of substandard care complaints.  So sad.

Lisa, Mike’s precious fiancé, is at her wit’s end trying to get Veteran’s Administration or Medicaid benefits processed correctly to change his situation.  She faithfully visits him when she can, brings him home-cooked food, and follows up the paperwork nightmare as Mike’s legal guardian.  Just when I wonder if things moving forward fast enough or why she hasn’t returned my phone calls I find out that she has started a new job to try an better their overall situation.  She is such a trooper.  Thank the Lord for Lisa’s love and care for her Michael.  And our cousin, Lisa, helps out where she can as well.  Cousin Lisa is an optometrist for the nursing home and has more than once been able to positively influence his care by her presence, her visiting, her dipomacy, her support of fiancé Lisa.  They are doing the best they can and that is both a gift and all I can ask from 200 miles away.

This is such a curious situation, you know.  I am an occupational therapist with over 30 years of professional experience including patients with the very same medical condition as my brother.  Yet due to a severe illness I am enduring, I cannot even visit him!  The dirty conditions of his living environment would surely trigger seizure-like attacks for me.  Chronic Inflammatory Response Syndrome, Multiple Chemical Sensitivity, or whatever you want to call this nightmare is keeping me from seeing my brother.  And this is the Lord’s plan for both of us right now.  I don’t understand it.  My heart is hurting.  I would be honored to work more closely with Mike, even provide supplemental therapy or visits.  I cannot do it right now.  Oh sure, I send him something in the mail occasionally or make a phone call to his facility and get placed on hold for a very, very long time before actually getting through to anyone less than 50% of the time.  We are all doing what we can and waiting on the Lord.  It’s just so very frustrating for each of us!

So if you’ve got an extra 300 bucks to donate to our cause, kindly send it to St. F—— Nursing Center in D—–, room 207.  Leave the pig and get my brother out of there please!  They might not notice Mike missing for awhile since a piece of meat is a piece of meat when you don’t care much for the sweet sense of humor that used to characterize my tall lanky sibling.  Oh geez, I’m getting a little upset here aren’t I?  Well at least the pig will stomach the food a little better without complaining.  Like the Cheerio’s commercial said many decades ago, “he’ll eat anything!  Hey Mikey!”  Yeah but it won’t be Mikey.  One day Mikey will be gone from the place he and his fiancé are calling, “the dump.”  May the Lord pour out His grace on those left behind when he does go.

I just hope that moving day will be soon.  O.k.  I’m done venting.  Gotta get back to praying.  JJ

sad pig

Handling loss is a skill for living well

Some disappointments this past week have reminded me of the importance of handling “loss” well.  Change is a certainty in this life and many of us have had more than our share of both the voluntary and involuntary fare.  Change often means letting go of something or someone we cherish.  For the Christian we can view change as part of becoming more like Christ, maturing in our faith, and working out the details of our lives with the Lord.  It is necessary!  And all too often it doesn’t feel well though.

Here are 5 changes that came in rapid-fire succession for me lately:

  1. A counselor that I have been seeing to handle the grief of this serious biotoxin illness I’m dealing with, suddenly discharged me from her care.  A week ago Tuesday I had a major seizure attack episode in her office and had to leave abruptly.  The episode went on while standing outside the front door to her office then continued as I struggled to get back into my truck.  An hour and a half later I was able to leave to return home.  She checked on me multiple times during the event and even called me a few times to discuss our next appointment.  Until that day she had been opening the window in her office for me to increase air circulation before our starting time.  When she did not do so until I was about to walk into her office (on a rainy, humid afternoon), the scented “warming candle” residuals, soil aerosols from her live plant, and possible contaminants embedded in the office carpeting were too much for me.  She is now unwilling to meet me in a nearby library conference room since her driving time simply would not be reimbursable, won’t fit into her busy schedule.  So for now it’s bye bye Julie.
  2. For the third year in a row I had to miss my husband’s United States Canoe Association Nationals due to illness.  I am sad.  I love watching Steve compete in his surf ski (racing kayak) and missed both of his races including the exciting trial class event with our outrigger canoe.  It sounds like there was a photo finish as he crossed the finish line and I was not there to take it all in or take pictures.  Sigh.  We love taking road trips together.  Even if we could have afforded the expense of travelling together, I cannot tolerate the fragrances of hotel rooms, conditions of camping, or the unknowns of renting a travel trailer.  Such is life with Multiple Chemical Sensitivity and Chronic Inflammatory Response Syndrome!  I stayed home with our German shepherd pup in our “safe home.”  Parts of the two full days were actually better by the way:  I got to dig in the dirt of a new garden bed.  The second day was terrifying however with two, severe, hour-long episodes while home alone.  My Jesus saw me through when I thought I would stop breathing.  I did not.  My husband needed this time away.  Besides, having someone stay with me or check on me in the end dangerously increases risks to my health.  We made tough choices indeed.
  3. I realize that the isolation that accompanies this illness is killing my spirit.  I sense my social skills eroding.  Sitting in my truck in a cemetery adjacent to a Garden Walk event on Saturday, I nearly panicked because I was late and there were cicadas plunking my windshield as I tried to wrap up a phone call with Steve!  I had not talked to anyone but my dog for 24 hours so I was glad for his call.  However, I had felt awkward and alone getting ready.  And I know that these were just feelings.  The evening out went fine with barely a few tic zips, enjoyment of select entrees, and meeting some really nice fellow gardeners.  It’s just that the social part of my life is so unnatural, absent, and different now.  Just like when I went through a divorce, lots of people have left my life once again.  Reaching out has been tough when it’s so complicated just to get together.   I will keep trying though.  I have to . . .
  4. An occupational therapy (O.T.) recruiter for an agency for whom I used to do contract work called me TWICE this past week!  I guess they really needed someone!  Oh how I miss working.  Last night I did the equivalent of 4 hours of (free!) continuing education credits for my O.T. license, inspired perhaps by the phone call earlier.  Maybe someday there will be an equivalent at-home professional job that I can do that will utilize my skills.  Just gotta get rid of some daily seizure attack episodes first, eh?  Today they lasted most of the day.  My “job” was to take a shower and make dinner.  Done.  Don’t need an App to keep track of this kind of schedule, I tell ya!  Sish.
  5. Most of the time my worship is in isolation.  For a long time I looked to my husband to try and fix this one for me.  Why wasn’t he trying to find a church for us in a newer building that wasn’t water damaged?  My criticism of him and “our” church goes on from here; it is not good.  I have tried to fill the void with a read-the-Bible-in-a-year App, Christian radio talk shows, following various ministries via email or Facebook, interacting with other believers via the same, and continuous prayer throughout the day including praying with Steve.  But I crave real Christian fellowship.  I crave Women’s Bible Study.  There wasn’t even an outdoor baptismal service with our church this year and the annual hot dog roast will be a “no” in October due to the noxious exposures from the campfire.  (The smoke was hell for me last year.)  My heart is breaking on this one.  I know the Lord sees it too.  I trust Him.  Just today I got the sense that I may need to reach out a little more and not wait for someone else to fix it.  I contacted our “Encouragement Ministry” leader about starting something with others who are home bound and I  am waiting to hear back from her.  Hopefully it will be soon!

While we could discuss the solution to these problems the more important point here right now is that I know that each of these will bring goodness in due time.  I have realized the promise of the Lord “restoring the years the locusts had eaten” (Joel 2:25) after my life fell apart in 2003.  Joy returned and reminders of it are all around me.  I have chosen to write about these things in hopes that you will pray alongside me for the Lord’s will and redeeming grace for these recent losses.  Perhaps you, too, have loved and lost much while enduring all kinds of trials.  Please let me know about them and I will pray for you.

Gentle Reader:  we are to stand firm on the foundation of our faith in Jesus Christ who will:

  • Make all things new.  (Revelation 21:5)
  • Direct our paths.  (Proverbs 3:5-6)
  • Extend His love, compassions, and faithfulness in newness every morning.  (Lamentations 3:22-23)
  • Remember us in our low estate with love that endures forever.  (Psalm 136:23)
  • Reward us for our faithfulness.  (Matthew 6)
  • Bless those who are good stewards of time, talents, and resources.  (Luke 16 &  Matthew 25)

And so much more.  I am encouraged.  My Jesus sits on the throne of my life and the throne of grace.  He will make beauty from the ashes (Isaiah 61) which are the losses that characterize living a full life here with Him as our Lord and Savior.  I trust His Word on this and hope that you will too.  Let us rejoice with great expectation for the goodness to come!

Isaiah 61

10 I delight greatly in the Lord;
    my soul rejoices in my God.
For he has clothed me with garments of salvation
    and arrayed me in a robe of his righteousness,
as a bridegroom adorns his head like a priest,
    and as a bride adorns herself with her jewels.
11 For as the soil makes the sprout come up
    and a garden causes seeds to grow,
so the Sovereign Lord will make righteousness
    and praise spring up before all nations.