What is most important

What is most important?

This is a question that marks my days no matter what my state of mind or health.  Every day for as long as I can remember, I got up and set goals for my waking hours.  Even if I have to modify them over and over again before the day is done, I have a mental list of what I hope to do.  It’s just how I am wired.  Some things get written down and some do not.  Before long I meet with the Lord and we go over things.  Usually some changes follow!

Proverbs 16:9 New International Version (NIV)

In their hearts humans plan their course,
    but the Lord establishes their steps.

If I’m not sure what to do (when overwhelmed or facing a barrier of some sort) then I stop and ask the Lord about it.  He knows my situation in addition to the desires of my heart and usually answers in a way that draws me closer to Him.  Sometimes I am challenged in obeying His leading.  That is always a mistake.  Things always go better if I follow the leading of the Holy Spirit, usually to read my Bible or listen to Bible teaching.  The day that follows always goes better that way.

When we are battling an illness or caring for a loved one our personal resources are limited.  Additionally, we may never know when that reservoir of energy or cognitive capacity will run out so we must make our best guess and proceed accordingly.  Will new demands change everything?  It is really hard to be flexible when our hopes are dashed over and over again, less gets done, and we become overwhelmed. So we strive to keep our spirits high and go with the flow, right?  “Let go, let God” as the 12-Steppers teach? There is always tomorrow, right?

Plans changing repeatedly over the course of the day or night has dominated my past 5 years so much that I practically numb out when it happens again.  I am not sure if this is a good idea or not?  What follows for me is pursuing smaller and smaller tasks after answering the question:  what is most important?  Often what has happened next fits the category more of survival than enjoyable:  get that rescue remedy from the frig . . . I will help you walk to the kitchen . . . trust me and push yourself up to get your legs working again.  Don’t worry, you won’t fall.  I tell you, this principle of setting priorities gets REAL really fast when in a time of crisis!

That may be an extreme example for you, Gentle Reader, so I will just say this a different way.  We both will be o.k. if we set our plans before the throne of grace and let the Lord guide is in all things big and small.  He cares for the details of our lives.  As He orders our steps He also gives us the power to take those steps too.  What is most important always gets done this side of heaven.  We didn’t die because the bathrooms didn’t get cleaned or we had to eat canned meat for dinner!  Dwelling in the presence of my Savior is the best food, fitting for my soul anyways.  And that dwelling happens best when completely in the arms of our Heavenly Father who loves us so!

As my brother, Mike, has often said:  just keep moving forward.  Yup.  When I can I do.  And sometimes that means staying right where I am for a while.  Rest is important too ya know . . .  JJ

scripture, Bible, Christian, to do list, list, priorities, important, Proverbs 19:9

 

What did you learn today?

And let ours also learn to maintain good works for necessary uses, that they be not unfruitful.  Titus 3:14

I learned today that it pays to take good notes.  When I had to replace a healthcare supplier within a few days (or lose my mind!), I was glad to find my notes from the research that I did at the beginning of receiving home infusions 7 months ago.  Perhaps back then I should have gone with that other company instead?  Oh well.  I got to work with their Patient Care Coordinator this time and she is wonderful!

I learned this past week how being off from work and  having less income has helped me to find inexpensive continuing education credits that I never knew existed before I got sick.  Looks like NINE of the TWELVE hours required will be FREE!  Yeah God!  I will be able to keep my occupational therapy license one more year!

OT, occupational therapy, occupational therapist, work, medical leave, disability, license, licensure, renewal

I learned this past month a deeper definition of true love as demonstrated in the life of my husband, Steve.  First some background:  we had to cancel a trip to see his family this past summer when his dad was in too much back pain to travel cross-country to our rendezvous point in Branson, Missouri.  His mom was disappointed that the celebration of her 80th birthday was postponed until Thanksgiving.  Then our trip to meet up with his family in Texas in November got cancelled when I landed in the Emergency Room five days before departure with severe back pain.   I wasn’t even able to go out to dinner with Steve on Thanksgiving (which means I missed celebrating our wedding anniversary on the same day!).  As you saw from my last blog, Steve’s response was simply that we were, “saving money left and right!”  Well, yes and well, no.  His parents are aging.  Visiting them at their home in California is complicated due to my extreme sensitivities.  Perhaps Steve will be making a visit early next year and when my health is more stable.  In the meantime he just continues to be a wonderful loving husband.  I am so grateful for his love and devotion.  Often he is my “Jesus with skin on.”

I learned this past year the meaning of the phrase Carpe diem.  Each little trip, each tender moment between Steve and I, each time the garden got watered or weeds got pulled were realizations of moments when I could do a little more.  The numerous moments that were quite opposite just made “seizing the day,” more special.  We have learned to be more spontaneous to enjoy the good graces of the Lord even when they last but an hour or two.  Carpe diem baby!

I learned these past 5 years of serious illness to call upon the Lord for everything.

Proverbs 3:5-6 New International Version (NIV)

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will make your paths straight.

Whether it’s finding the money for medical treatments or getting myself up to go to the bathroom when seizing, my Lord and Savior cares for the details of my life and gets it done.  He is there when I am awake in the middle of the night.  He provided that relic airplane for me to sit under on a sweltering summer day so my husband could fulfill a dream at Oshkosh.  My Jesus will be joining us in celebration when I become well again someday too.

And lastly, I have loved learning the value of writing Hope Beyond.  It’s not quite an online journal but a way of looking from the inside out.  I hope to point you, precious Gentle Reader, to more than the saga of my situation but to the glory that awaits both of us when we place our trust in the Lord, Jesus Christ.  As Steve and I say in our Christmas letter this year:

No matter what our perspective may be, the most important view at Christmas (or anytime) is the one that brings us closer to the person of Jesus Christ. We stand in awe of His sacrifice for us that brings unspeakable joy, knowing Him as Lord and Savior over all.  He loves His own more than words can say:  the best Christmas gift of all.

Going beyond our temporal learning to the eternal love of Christ can be our gift today, next month, next year, 5 years from now, and beyond.

Gentle Reader, what do you say that you have learned?  Please let me know, k?  JJ

lake, couple, Christian, Lake Winnebago, Oshkosh, marriage

 

a question of character: no April’s fool.

Learning from one’s mistakes is a given for any reasonable person.  We must learn from our mistakes or we will sucuumb to foolishness in due time.  Learning from the unforeseen negative consequences of a reasonable decision is more difficult yet still a given for any reasonable person.  Figuring out how to do this is, well, rarely given!

In the event a reasonable person makes a difficult decision after heartbreaking circumstances leading up the decision, and the outcome is good, we all celebrate.  In the event a reasonable person makes a difficult decision after the heartbreaking circumstance and the outcome is not good, we all are either:  1) sad and hang in there anyways or 2) indifferent then simply walk away from the painful truth for a time.  And it could be a long time, in my observation.  Some folks watching you may never return.  When folks have left my life my response has wavered from “let them go” to “seeya next time.”  Both are the same really and have served to preserve my ego, my character.

How I feel about the good or bad of the total circumstances must not drive who I choose to be.  In other words my identity must not become destroyed by the mistake, the misfortune.  My character must remain fixed on the fact that I am who Christ has made me to be.  He knows me, love me, leads me, and will be there whatever the outcome of a situation may be, long before I ever know about it.  So using the insight of John Maxwell and applying it to my ramblings this April Fool’s Day, no matter what may come I must go forth with wisdom.  The best source of wisdom is the Bible and the words of my Savior, Jesus Christ.  Here’s some I like today:

10 He replied, “You are talking like a foolish woman. Shall we accept good from God, and not trouble?”   Job 2

The fear of the Lord is the beginning of knowledge,
    but fools despise wisdom and instruction.  Proverbs 1

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. Psalm 139

Therefore, there is now no condemnation for those who are in Christ Jesus, Romans 8:1

being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ; Philippians 1

Well cool beans.  Now that I have settled the matter at least in my own mind, I will put my feelings of foolishness aside.  I mean, how could I have known that a painful, expensive dental procedure that I had researched for 9 months would only get rid of wretched convulsions for a couple of days?  Holy cow.  Or is it holy crap?  Crapolaski?  (I’m Polish dontcha know.)  Of course right away I wanted to share my joy with the online world and posted the news everywhere!  You are my peeps these days, my tribe during these years of relative isolation.

So there you go:  the truth.  My “Hope Beyond” must remain in the Lord Jesus Christ and not in my circumstances.  He will use this for His glory:  the good, the bad, the ugly.  My character remains despite my misfortune, despite my weakened and pained frame.  And this Sunday I will rejoice with 2 fewer root-canaled teeth the promise we Christians remember at Easter.  Christ is risen and He will come again in glory!  On this we can be certain.  As for my situation, I probably just need more time to heal these fried nerve endings.

It is still a beautiful day outside and my garden is coming back to life.  Hang tough, Gentle Reader.  In due time, I AM GOING TO BE WELL!  Just Julie

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.

 

 

Just Julie Treatment Update

Brief update:  I seem to be in what an airline pilot might call a “holding pattern” lately.  When I can break through the perpetual feeling of sickness and get myself out of the house, even if it is to our backyard, there’s always a backlash of noxious symptoms.  Recently my chiropractor recommended a heavy metals blood test and after a month of getting the paperwork and procedures right we have the results:  high potassium and very high mercury.  Yipes!  So my husband and I are investigating chelation therapy.  I have an appointment with a Doctor of Osteopathy who provides chelation and other medical, nutritional interventions.  In the meantime I’ll check with my family practice physician and see if there’s enough data to proceed with caution.  We will be covering this in prayer.  For most folks chelation is a difficult journey.  But hey, I’m familiar with that already, eh?

More details:  The daily 2 to 5 hour waking seizure attack episodes continue.  One day each week the episodes exceed 8 hours on and off during which I am largely bed bound.  If I have pushed myself to complete heavy gardening tasks or more than about 2 hours of appointments outside of our home then the episodes can increase to 12 hours.  The rest of those days is pretty worthless.  I have at least two “worthless” days at home each week anyways, regardless of my activity level.  These are days where I pretty much take advantage of the lovely “3 hots and a cot” afforded by our home.  I may see you here at the computer and mope through other very sedentary tasks.  Dinner may or may not get prepared.  Thank goodness for my homemade freezer meals and frozen burritos for Steve on days like these!

The normal sleep-wake cycle remains elusive for me.  When I do go to bed around midnight it is usually because Steve has carried me there in the neurological collapse-mode of a seizure attack.  This happens twice per week.  I’ll pass out at some point thereafter only to awaken in less than 4 hours, usually with another episode of tazoring.  Many days the tazoring wakes me up in the middle of the night.  Good grief!  That’s what happened last night prompting this blog.  When I do wake up in the middle of the night I have to find a way to yank myself out of bed or they will continue indefinitely!  This also happens twice per week on average.  The other nights I endure an episode sometime between sunset and midnight then I am wide awake until 4:00 a.m. or so.  If I can wait until I feel sleepy then the episodes falling asleep will usually be shorter and sometimes not at all.  I love it when the latter happens!  The best schedule for me then is to be up late, go to bed and sleep until noon-ish, endure a shorter waking tazoring then attempt to move forward with the day.  I love days when I do not have any appointments that disrupt this schedule!

The only “treatment” I can tolerate at the moment is a strict diet, coconut oil, colon hydrotherapy to detox, and extreme mold avoidance.  Occasionally I can take a short walk late in the afternoon or use our elliptical for 5 minutes, usually in the middle of the night before bed.  My diet is mold-free, gluten-free, sugar and sweetener-free, dairy-free, and low oxalate.  The latter has produced some detox reactions that appear to be beneficial; bone broth is incredibly nurturing to my digestive tract.  Most medications, pharm-grade supplements, and typical detox/immunity foods (such as lemon water, probiotics, ground flax seeds or oil) produce convulsions.  Not good.  This syndrome has a name:  Chronic Inflammatory Response Syndrome or Multiple Chemical Sensitivity.  The good news is that my gut health is better than it has been in a long time.  That tells me that the dietary strategies are working!  There are times when I feel more alert and my thinking is clearer.  At times my memory is better.  To my delight the creative juices are flowing again as reflected in my latest designs at Trinity Jewelry by Design.  And sometimes I am even able to make jewelry during the daytime instead of just with the crickets outside the window of my cute little studio area . . .

October 11th will mark the 3 year anniversary of becoming sick.  (For more on that story, see the About Julie page.)  I’ve been off from work for 2 1/2 years now, the longest since I started working in at the Penny Candy Place as a teenager.  No work or disability income is in sight.   The Lord has provided for my every need through my gracious husband and His grace.  Through it all Steve and I have been challenged to the ends of our human strength through unbelievable trials yet somehow feel closer to each other and to the Lord than ever before.  Steve is my hero!  DSCF0245We trust in Proverbs 3:5-6, Psalm 41:3Psalm 71:14, Revelation 21:1-8 and more.  The Lord is faithful to His Word:  we have seen it, we hope in it, and His living Word carries us through it all.  Even in those split seconds when it feels like my heart, my breathing, and my brain waves have ceased to function and I do not know if life will continue for me, I am no longer afraid.  That’s how real the hope of heaven, the reality that my eternal life has already begun as a child of the King, the loose grip I have on the things of this earth are to me.  Oh Gentle Reader, can you say that too?

So many unknowns fill our days.  We can respond with woe and fear or we can respond with FAITH.  And our faith is only as strong as that to which we apply it.  I hope that you will join me or have put your faith in the omnipotent God over all.  Yes, I wrote all. 

Nothing less will do when faced with the next, er, bite in the shorts.  You know I had to say it didn’t you?!    :]