Slow But Sure

What will it feel like to be almost normal again?

Will the days fill with meaning, the nights rest with pleasure?

Alas I know not what tomorrow will bring —

So it’s it will be in the smaller moments that I will define who I am, who I will be.

At least as long as it is up to me . . . and little is of course . . .

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An important decision came to me today that surprised me.  Oh there were the impossible ones that came in the hours beforehand which could be the subject of a tragic drama-blog here (ie. how to handle the seizure attacks overnight, sleep deprivation, heavy burdens, pain) but all that changed when I was catapulted awake at 8:17 a.m.  Could I make it to that appointment after all to the eye doctor?  They didn’t really cancel my appointment from that frantic message I left at 4:57 in the morning did they?  Well I was about to find out!

I pulled on some clothes; rushed back and forth throughout our humble abode; threw together the records, food, and drink I had loosely assembled the night before; and was practically out the door before my hubby emerged from shaving in the bathroom!  I’ll call the office on the way, I thought to myself.  And lucky for me my appointment time was still open for 8:45 a.m.  Holy cow.

Lord only knows how I function on days like these.  The headache pressed sharply into my skull with the plethora of medical testing and related tasks that fill my very full (medical) “work days” lately.  (That is a story for another time!)  Diarrhea delayed the first few steps of my eye exam as the technicians escorted me to rooms with various equipment, administered those dilating drops, etc.  So now my vision had become as blurry as my mental status.  Neat huh?  Sish.  Soon it was time to make some decisions about contact lenses and the potential replacement of eyeglasses.  Three years had passed since my last exam.  Clearly vision care has not been my priority of late!

I don’t even know her name yet her face will be memorable for many weeks to come.  The Optician in the big room with all those designer frames was an older lady with exquisite taste, professional temperament, mastery of her craft.  She quickly knew that I would benefit from some coaching in my selections and did so with style and grace.  I liked her eyeglasses, Silhouettes she called them, and decided it could be a new style that would work for me.  But was I ready for it?  Suddenly I realized that I was deciding about more than a functional facial dressing . . . no, I was crafting what presentation did I really want to make with my eyes, my facial expression to the world these days?

Makeup doesn’t work for me most of the time.  I do keep my hair colored and trimmed fairly regularly, styled about half of the time.  My clothing is rather casual favoring comfort not the fashion trends of the last decade.  Rarely do I adorn jewelry even though I had my own business making and selling colorful macramé jewelry for almost 3 years. My face has aged considerably.  The summer tan has faded.  I no longer wear contact lenses which used to give others direct visual access to my eyes, my soul.  My current eyeglasses with red and black frames are my only adornment, providing a little bit of covering behind which I can hide.

Soon I excused myself to the bathroom yet another time for a little moment of reflection.  Would I choose a new style behind which to mask my true self a little longer?  Yes it really does feel like that.  Would it be frames where the focus is on the shiny rhinestones or metallic finishes instead of the tender woman peering out from behind them?  Only after a few tears later did my choice become clear.  I selected the ones like those my teacher was wearing today.  Kind of like I did with Mrs. Heitkamp back in the 5th grade.  (Oh how I loved her so!)

Far be it from me to miss a moment where I can slowly but surely find a little extra meaning in what is happening and move forward too.  I really do want to be well some day and by golly I hope that my attention to the little things will help me to get ready for that day.  It’s just a pair of eyeglasses right?  Maybe so.  Behind them this time will be a little more of me and a little less of something else blocking the view of the woman inside coming back into view.

1 Peter 3:3-4 New International Version (NIV)

Your beauty should not come from outward adornment, such as elaborate hairstyles and the wearing of gold jewelry or fine clothes. Rather, it should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God’s sight.

If you are in a battle right now too, Gentle Reader, please do not lose hope.  Please don’t hide.  Our Lord Jesus Christ yearns for fellowship with each of us as He dresses the heart, infuses the spirit, loves the broken, and leads us to His throne of grace full of splendor beyond compare.  We are beautiful in His sight!  One day I pray that we will see these truths ever so clearly as the pains of this world give way to His richest glory forevermore.

And for that we are definitely going to need sunglasses, eh?  JJ

sunglasses, hiding, worth in Christ, Christian, woman, identity, self worth, self esteem, illness, disability, overcoming, recovery, getting well

 

 

 

 

Little blue booties ring true

The little reminders that things are going to be o.k., that the Lord is in charge, and that you have all you need are quite an encouragement to me today.  I am seeing this more clearly as my head clears after a whirlwind “Plan B” long weekend.

We never made it to Branson, Missouri for the celebration of my Other Mom’s (aka mother-in-law’s) 80th birthday celebration.  Family was scheduled to land there from 4 States for a long weekend including the 4th of July.  My Other Dad (aka father-in-law) had an acute worsening of multiple joint pain and was unable to drive the two of them cross-country from California to Missouri so we made the decision to do what was best:  cancel and reschedule the trip for the Fall.  We all scrambled to cancel various reservations made for camping, cabins, the Dixie Stampede show, watering of the garden in our absence, etc.  Then this wifey-poo decided she still needed to get away . . .

Meanwhile, my life continues to be dominated by the treatment of chronic Lyme disease, a serious fungal co-infection (protomyxzoa rheumatica), and the complicated detox/supplement regimes that go with it.  While I am grateful for a solid treatment plan, the making of our home into a hospital plus the tangible reminders at home of thousands of hellish convulsive episodes begs for a change of scenery when possible.  Sure looked like the enormous effort to get away was going to be worth a bit ‘o respite from all of those reminders.  I reacted selfishly when everything changed.  I was more crushed for my own sorry lot than my mother-in-laws cancelled family gathering, big birthday celebration.  Maybe I need less of “poor me baby,” sentiment, eh?

Steve and I thought through our options.  We had cancelled supporting a paddling race in a town about 100 miles away since we were going to be gone so we re-volunteered to help out and bring our Stellar kayak display.  But travelling a total of 200 miles plus standing out in the hot sun all day recording race times and hosting Steve’s booth seemed a bit much after 3 straight days of IV antibiotics.  So what about camping afterwards?  In the end we worked into the wee hours of the morning the night before the race to make Plan B a reality!

  • Supporting the race.
  • Finishing up all shopping plus cooking within a day for my special diet.
  • Making new reservations to camp in 2 places over a holiday weekend beginning north of the race and en-route to a new destination.
  • Continue north to Silver Lake Dunes and the campground adjacent to a Christian camp where a young couple we know has worked for about 7 years.
  • Return home after the 4th of July for Steve to return to work, allowing him to finish some important training and projects that we would have missed had we gone to Branson.
  • Resume treatment at home after a 5-day break.
  • Commence about 8 loads of laundry, post-camping melee, etc. too!

So with a tremendous effort, the ebb-n-flow of violent reactive episodes that followed being off of my treatment schedule, and some sweet memories sprinkled therein we had a decent weekend overall.  At some level I exclaim:  how crazy!  And: Is it worth it?  Well my answer this time is different than in the past:  NO!  There still are too many noxious exposures from campfires in any campground to succeed at avoidance even inside a modest travel trailer.  There is always some type of breakdown that ends up stressing us out, creating conflict even nearly 5 years down the road from dealing with this serious illness.  When we got back I was ready to sell the travel trailer the Lord had provided the resources for almost 3 years ago.  What were we thinking back then anyways?  Trying to continue with a normal life was my focus then when I did not have a clear treatment plan.  Killing the beasts within me at an extraordinary cost is my focus now.  The proceeds from the sale could pay off some of our debt.  I was ready to let it go should the Lord be leading me to do so.

In a Christian marriage, the husband is the God-ordained spiritual leader of the home.  His headship is God’s design for the protection and provision of his wife and family as he follows the leading of the Lord.  I have come to trust this, be blessed as well in submitting to Steve.  As it turns out in the scenario I have shared here, Steve suggested that we wait to make a decision about the trailer until later this year.  We have a couple more trips planned and it is clear that he wants me with him on all of them.  How sweet!  His love is amazing.  We will make some further adjustments in how we handle things next time and hope that I will be doing better as my treatment progresses; going with a partial treatment holiday could work out better for travelling than dropping everything, Lord willing!

Oh did I mention the blue footies yet?  I bought a large box of disposable medical shoe coverings in anticipation of developing a new product this past Spring.  (I could earn some money to pay for the development of my real invention by my company, Two Step Solutions, Inc.)  Attaching a Swiffer-style duster with Velcro to the bottom of a disposable slipper makes a great foot-broom for dusting wood floors.  This saves a lot of time and effort as compared to other cleaning methods, IMHO!  Then when I continued to have difficulty functioning, the idea got shelved instead of developed.  Dang!  Flash forward 2 months later and those cute booties are part of the garments I ask my home health nurse to wear to avoid chemical/dust exposures when administering my IV antibiotics three times per week.  Works great!  And in thinking through all of this today I am reminded of these truths:

John 16:33 New International Version (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.”

Matthew 6:25-27 New International Version (NIV)

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?

My Heavenly Father and Husband is so good to me.  He loves me so and I get to feel it everyday in the arms of my beloved Stevers.  The Lord is there in times of wretchedness, times of joy . . . none of it will be wasted as He leads me home to dwell in the heavenly mansion of many rooms, near the river of Life, with the saints who have gone before me sheltered in His majesty beyond imagination.  Thank you Lord that you sprinkle some of that goodness into my days to encourage me, to encourage my beloved.  Thank you for caring about all the details of our lives.  I submit them to You.  We will wait upon the Lord, Jesus Christ, until You walk us home to sit at Your feet in awe and wonder of all that has gone before us:  from blue booties to a lighthouse along the shore.

This rings true above all else:  You are so good to me.  Thank you Lord.

Dunes Harbor, Sleeping Bear Dunes, lighthouse, just julie writes, Julie Horney
Kayaking at Lighthouse Beach along Silver Lake Dunes

 

 

 

The Turning Point

When you start to leave hell, it’s important to take stock of where you have been and where you are then leave all of your baggage at the turning point.

Hi Gentle Reader.  This is my gentle wisdom to you as I gratefully and graciously turn the corner after 3 years of wretched illness.  Much grieving has already gone before me and my beloved Steve.  Much loss has already pruned that which is no longer critical to our lives.  Much angst at our Lord’s merciful throne of grace has established Who is most important in our lives and that He was leading us through all of this.  Much dashing of hopes in false turning points along the way has produced endurance for what appears to be the last leg of this race.  And yes, much joy has returned despite the jagged line that is normal in the recovery phase.  That’s o.k.  WE HAVE HOPE!!!

Briefly, I am experiencing 50% improvement in my health after beginning treatment for very high mercury levels.  This process will require a slow titration of chelating agents, detoxification with the gentlest of methods, much rest, and humility.  Humility?  Oh yeah, humility to stay watchful for the Lord’s leading each step of the way and to continue to lean on Him as my own strength returns.  My husband has proven himself again and again as the Lord’s instrument, a capable spiritual leader in my life.  I have many examples in my life how pride has gone before my downfall, you know (Proverbs 16:18).  I don’t want any more “slips and trips” anymore particularly of my own creation!

As I have started to feel better and do more my devotional time has diminished.  This is not good.  So in response to this turning point, I aim to spend more time in the Word than I have in the past when feeling reasonably well.  I aim to keep practicing gratitude:  holding lightly any material blessings, fruits of my labors, times of fellowship and the like.  I aim to smile more and complain less.  After all, I faced death many, many times!  These days the gift of  time and space, my talents and gifts, and the people/places/things around me are a bonus.  I have never believed that I deserved either the good or bad things that have happened in my life.  They simply “are.”  They simply “were.”  It is with great wonder that I aim to explore each day for what may come.

How can anyone really see beyond a turning point anyways when he or she has never been on a given journey before?  If we worry about it then we have chosen to believe a lie.  No one knows the future so why make up something bad?  Why not something good?  I aim to squelch what is false with what is true from God’s Word:

33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.  (Matthew 6)

Nuff said.  Steve and I enjoyed a long walk in the rain this evening with our pup.  This picture portrays my heart inside.  God is good.  All the time.  God is good.  JJ

God is good.  All the time.  God is good.
God is good. All the time. God is good.

 

 

What then shall we do?

This is what the Lord Almighty, the God of Israel, says to all those I carried into exile from Jerusalem to Babylon: “Build houses and settle down; plant gardens and eat what they produce. Marry and have sons and daughters; find wives for your sons and give your daughters in marriage, so that they too may have sons and daughters. Increase in number there; do not decrease. Also, seek the peace and prosperity of the city to which I have carried you into exile. Pray to the Lord for it, because if it prospers, you too will prosper.”

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. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the Lord, “and will bring you back from captivity.  I will gather you from all the nations and places where I have banished you,” declares the Lord, “and will bring you back to the place from which I carried you into exile.”  Jeremiah 29

I offer this passage for those of us who are Christians and are worried about what may come here in the United States.

I offer this passage for those of us who are recovering from serious illness and feel vulnerable or too weak to act in our own strength to try to change things.

I offer this passage for myself to remind me WHO is in charge of all things:  past, present, and future.  And I will add this reassurance as well:

 

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?

28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.  Matthew 6

Why is it so easy to forget the Lord’s faithfulness in my life?  First, He led me to Him when I was finally ready to stop striving out of my own determination to make something out of my life, MY WAY.  Second, He gave me a reasonable life as a baby Christian only for it to spiral out of control, my control.  His hand was upon me and wanted me to depend only upon His grace.  Third, He brought me exceedingly sweet restoration, the desires of my heart, and a love worth waiting for in the arms of my intended beloved.  Fourth, He allowed exceedingly difficult weakness to strengthen our faith and prepare us for His return in glory.  Yes, I believe He will return soon.

More important than looking for what disasters may bestow us in this once great United States of America is to ready ourselves and WATCH for the return of our Lord and Savior, Jesus Christ.

39 But understand this: If the owner of the house had known at what hour the thief was coming, he would not have let his house be broken into. 40 You also must be ready, because the Son of Man will come at an hour when you do not expect him.”  Luke 12

What then shall we do?  Wait without worry; meditate on His Words, instructions and promises; carry on with the events of living; and share the hope within us.  If I must bury my nose in His holy Word for hours to calm my fears then that is exactly what I shall do.  I know I will find You there my Lord . . . in sweet fellowship until I am in your presence forevermore.  Just writing this has lifted my spirits.

Just reading this, can you sense His peace too Gentle Reader?  I hope so.  JJ

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P.S.  I’m thinking of putting together a group Skype devotional and prayer time once per week with others who are largely isolated for whatever reason.  The focus would be open and based upon belief in God through the person of Jesus Christ of the Bible.  Please leave me a comment below if you might be interested.  I’ll do a separate blog on this soon!  Take care, JJ

Let us gather together for prayer . . .
Let us gather together for prayer . . .

 

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.