Tag: Jesus

He knows

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Whenever I am down and out

Instead of rising up and giving a shout,

I’ve learned to keep my big mouth shut

And hold my poker face to save my gut.

I used to sputter and blurt out a reply

And earned a reputation like that of an un-nice guy;

They called me “bold” but it got me no where

Just too many nights right here alone in my under____.

Well not really but it rhymed you see

‘Cause appearances were all the rage back then to me;

All the while He waited in silence

Beckoning me with hope and a promise.

Decades flew by and it weren’t too pretty

My youth faded:  I lost more than an itty bitty:

My husband, my mom, my brother, my dad

I had more than enough reasons to be quite sad.

So where did I land when the fires took it all

The shell of a woman who once spoke a little too proud and tall?

****************

Hmf.  This broken child crawled before the throne

Put down my sword and picked up His own.

The dragons we slew:  the Christ Jesus and I

My strength now His, my voice that of One on high.

My steps softened, tears sweetened at last and for better reasons

Even the fruit of my labors grew differently in the coming seasons.

I have not any idea where all this will go

Will I ever “get there” or find the answers I need to know?

It almost doesn’t matter ’cause even one bummer leads to the next joy

So ‘just hold on Little Julie, this next chapter’s gonna be quite a ride!

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Where have I gone?

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Sometimes I just don’t recognize myself anymore.  I have used many words for myself such as Julie Anne, Recovering Type A, Recovering Catholic, Adult Child of an Alcoholic, Jul, Child of the King, Snookums, Just Julie, and Booberry.  Many other labels inside my head will not make it to this blog as they are unkind and reflect the stinking thinking that was an outcome of my childhood.  While I have come a long way there is still so much to do!

all things have become new

My biggest challenge these days is having some kind of identity when my world is smaller; there is less going on.  I am sick a lot of the time.  I am isolated most days.  I go fewer places, see fewer people, engage in fewer activities, and generally do less than at any other time in my life for longer than any other time in my life.  Whilst engaging in various activities a person engages in various roles that comprise one’s identity, for example:  friend, church goer, Master Gardener, sister, sister in Christ, kayaker, exercise enthusiast, and so on.  All of the roles that I have mentioned have severely diminished for me in the past 2 years because of a serious illness.  I do not know when this will change.  The tendency is to ask the question, “where have I gone?”

girl in the rain

I really miss my life before illness.  Sure it wasn’t perfect.  I still had chronic pain, went to the doctor and had some type of treatment for pain a couple of times per month, and limited my work schedule to a maximum of 30 hours per week.  But I was also the most physically fit I had been in my entire life, had the greatest financial freedom that I have ever had, enjoyed rewarding work as an occupational therapist with a flexible schedule, and went to lots of neat places with my amazing husband.   My mind was sharp, my confidence was growing, and I felt really loved.  Things are more mushy now.  Most of the time I feel lost.  I am not even convinced I have the correct diagnosis or treatment plan.  So this translates into the reality that I don’t really know when I will be well again.  This is tough stuff indeed.

And yet there are many new activities that have emerged these past two years.  While I don’t work in all-things-gardening as much, I did become an Advanced Master Gardener AFTER I got sick.  That was an amazing and humbling accomplishment!  The Lord gave me the opportunity to explore blogging, learn more about social media, publish an eBook (Hope Beyond Lyme:  The First Year), learn to make macramé jewelry, and launch an online jewelry business (Trinity Jewelry by Design).   I’ve made some amazing friends via a local Lyme Support Group in addition to some compassionate folks online.  I have kept a journal for most of my life and now my blog has a growing list of really cool followers from around the world.  Talk about humbling!  Wow.  If only you could see my heart right now, transforming from an identity crisis between the lines of this blog tonight to a woman with a vision.  You do that for me, Gentle Reader, guided by the Holy Spirit.  Thank you for listening as this gets worked out within me . . .

broken to beautiful

If we were to examine the experiences of my life, we would probably agree that I have had a life that has been harder than most.  Over and over again I have had to find Little Julie then Jul and Just Julie amidst a firestorm of hurt, loss, and strife.  I have come to understand that the Lord has had His guiding hand, loving arms, and protective wing around me all along where the good people and perks of life were missing.  He has allowed the trials and tears to bring me closer to Himself, to help me to see beyond the circumstances around me.  The Lord has shown me that the bad stuff was not wasted or intended to hurt me.  The Lord wants me to be complete and allows all this to conform me into the image of Christ.  I pray that I will not lose heart during the refiner’s fire.  I pray that I will see His blessings soon as I have seen so many times in the past.  I just gotta hang on a little longer, let Him carry me a little more.

Where have I gone?  I am in another wilderness experience like Moses and the Israelites of the Old Testament who wandered in the hot, dry desert for decades wondering if they would ever be “there yet.”  I must keep my eyes on Jesus:  the light that leads and the cloud that blots out the forces of evil that taunt my doubts, fester my feelings of inadequacy.  It just doesn’t matter anymore where I have gone.  What matters now is where am I going?

Happy new year, Gentle Reader.  Will you go with Him too in 2014?

When the time is right

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One of the hardest parts about chronic illness for me (longer-duration illness, not permanent, hopefully!) is the change in my relationships.  I’ve written previously about the loss of casual friendships, the ones based upon common interests or gathering places.  Today I’m talking about the one between a husband and wife.

Steve and I have been married almost 6 years.  I call him my “intended beloved” since I believe the Lord has blessed me with an amazing man of God as my life partner.  We came together in our late 40’s, having learned much about life, people, and the Lord’s enduring grace in the years before we met.  We’d both lost our youngest sibling and the last of our grandparents within the past 10 years, shared both similar and completely opposite interests, had to relocate due to divorce, seen plenty of changes in the world around us, and came to a saving faith in Jesus Christ as adults.  Still when we got together we needed to work on a few things as a couple.  I believe these things have become our strengths and bonded us together for life.  Yes!

Steve and I share the “love language” of caring touch.  (For more on the 5 love languages, see the work of Gary Chapman.)  Therein the challenge of late lies.  The most noxious symptom of Chronic Inflammatory Response Syndrome for me is seizure-like episodes, 3-4 times per day.  Most any sensory stimuli can make a seizure attack worse or even trigger one if it is intense enough.  An episode can become  worse after it starts if Steve or anyone touches me.  So imagine a loving spouse attempting to comfort his or her beloved at a time of severe illness, reaching out and discovering that the gesture actually makes the person worse!  And if this happens over an over again, despite the caution, precautions taken to be gentle or vary the type of comfort, the spouse can become discouraged.  In our marriage, we have decided to work with the symptomatology and find a firm touch or closeness by proximity that sort of worked for me.  Thankfully, Steve did not stop trying altogether.  I understand that could have happened.

After all, the worst seizure attacks and convulsions happen late at night.  Steve often needs to go to bed to get up for work or another commitment the next morning so he simply cannot stay up with me night after night.  Our physical intimacy suffers.  Oh and if the attack isn’t so bad and we attempt marital relations, it’s a crap shoot whether or not the noxious symptoms start again.  Can you imagine turning something intended to be precious into something so ugly?  We often don’t even “go there” if I’m feeling sick or I’m in “pre-tic mode.”  The heartache of frustrating my spouse isn’t worth the Russian roulette we must play to see if things are going to work out o.k.  Stopping a tender moment also wrecks my thought process; it wrecks “the mood” for me.  Steve just says, unbelievably, that he doesn’t mind or that we had a time of closeness anyways.  Where do they make guys like him anyways?  Certainly I had not seen any in my past . . .

And this is where I must trust the Lord to sustain me, to sustain Steve-and-me through this season of our relationship.  I am incredibly blessed to be married to a man who loves me truly, “in sickness and in health.”  I did not experience this when I was married before as a young woman.  The Lord allowed certain health issues at that time to challenge us, test us, deepen our faith and we both failed to lean on His leading to overcome the trials.  In the end, my former spouse turned to another woman for solace and physical intimacy.  She was an unlikely comfort:  wealthy, mother of 6 children, and spouse of a man about to be imprisoned for embezzlement.  Craig left anyways.  And what that left me was a fear of relational intimacy or at least of trusting another man to endure the inevitable trials of life.

In the time that followed as a single woman, I turned to my Heavenly Husband for comfort, protection, provision.  He was my constant companion and much healing occurred.  It wasn’t until a time of serious illness struck 2 years ago and 4 years into my marriage to Steve that I realized a little more recovery was needed.  Steve’s steadfastness strengthened by his true relationship with the Lord has never waivered.  Never!  I am humbled and grateful.  I often see in Steve:  “Jesus with skin on.”  Steve has been wounded by his past and an ex-wife who disrespected him terribly.  Regardless, he has rarely brought any vulnerability from that experience to our marriage.  He, too, has allowed the Lord to “restore the years the locusts have eaten” (Joel 2:25), rising up to become the spiritual leader God intended.  So glad he’s tall too.  I love looking up to my Stevers.

When the time is right, when we have submitted ourselves to the refining fire that can be the trials of life, when we are faithful to the calling the Lord lays before us, we too may be rewarded with blessings beyond belief.  Those blessings may not be what many think of as gifts or rewards.  For me and my beloved, those good things are the ability to overcome the wretched things of life in a way that actually deepens our love relationship together as well as our walk with the Lord.  My hope in writing this is that you are also seeking the One who knows your pain and loves you just as you are:  the person of Jesus Christ.  (Psalm 41:1-3)  He may indeed bring you an angel to minister to your needs, a “Jesus with skin on.”  He may bring you to the foot of His throne of grace a few times in desperation, alone.  I know that He will not frustrate you beyond what you can handle, however, and will fill your heart with unspeakable joy someday.  (Romans 5:3-5)

I am grateful to see the latter despite wretched illness.  I pray that you too, Gentle Reader, will be able to see all this and more when the time in your life is right.  (Ecclesiastes 3)  The sorrow will not be wasted, of that I am sure if we but keep our eyes fixed on the face of Christ.  We may even get a sweet snuggle with someone special too!

*******************

Addendum:  A new medication is bringing new hope.  I’m down to about 1 attack per day and they are less intense.  We are holding onto hope as this journey of illness appears to be changing.  Praise the Lord!!!!

Keeping Calm

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Jesus Calms the Storm

22 One day Jesus said to his disciples, “Let us go over to the other side of the lake.” So they got into a boat and set out. 23 As they sailed, he fell asleep. A squall came down on the lake, so that the boat was being swamped, and they were in great danger.

24 The disciples went and woke him, saying, “Master, Master, we’re going to drown!”

He got up and rebuked the wind and the raging waters; the storm subsided, and all was calm.25 “Where is your faith?” he asked his disciples.

In fear and amazement they asked one another, “Who is this? He commands even the winds and the water, and they obey him.”  (Luke 8)

This is such a great story isn’t it?  The newbie disciples did not know that there was no way that they could drown with the God of the universe in the boat with them!  And further, the story illustrates the omnipotence of God, that even the raging seas obey Him.  This story also reminds me of a message from Pastor David Jeremiah in which he taught the truth that a person in the middle of God’s will cannot perish until the Lord’s work is completed in him or her.  “Cannot perish!”  Wow.  Sure makes my fears and worries worthless.  If I could just remind myself of these truths in the midst of my own storms then surely I would be a better instrument for the Lord . . .

I might have made some progress last night.  Allow me to explain.  When reeling from 1 1/2 hours of relentless seizure attacks, I eeked out to my husband, “I need help.”  Within moments were on our way to the emergency room of a local hospital.  All I could think about was, “thank you” to Steve and, “I’m going to get help.”

Getting that help took a long time.  First there’s the registration, then the review of the bazillion supplements, compounded medications, and meds, and the $100 emergency room co-payment.  The ER Doc asked a few questions, called my family doctor, and a nurse started an IV.  200cc of fluids and some pain meds began to flow through the sore IV line in my frail forearms.  And amazingly within about 20 minutes, the seizing stopped.  Praise the Lord!  I actually started to feel sort of normal.  Even the neck headache from the thrashing of my head went away.  Wow.

What I did not expect was the diagnosis.  While I am not going to go into the details here, I will say that I was shocked.  Both Steve and I did not agree about what was written on the page.  Sensing the anger rise up within me, gratefully, I started to pray instead:  Lord, help me to handle this as you would.

I asked to speak to the ER Doc and expressed my concerns.  He said that to change the diagnosis would be fraud.  I believe that I respectfully disagreed and stated that as a licensed healthcare professional myself, I understand both the responsibility of medical documentation:  to get it right and to respect the future implications for the patient.  I thanked him for the treatment that stopped the seizures.  Later I chose to “qualify” my signature on the discharge instructions in a way that indicated that while I received the discharge paperwork, I did not agree with its contents.  Then we left.

It is now 28 hours later and I have not had another seizure-like episode!  Praise the Lord!  The “seas” remain calm and I was able to get some restorative sleep; I even caught up on a few errands this evening with my pup in tow.  I have begun some online research related to my experience of the past day and started pounding electrolyte replacements to keep myself hydrated.  My Lord is the only one who knows what the next day holds for me . . . will I make it to an unrelated doctor appointment tomorrow or even a quick outdoor outing with my hubby mid-day?  Or will the attacks return as I lie on the bed a few minutes from now?  The latter has been my life for virtually all of the past 1 1/2 years . . .

Keep calm.  Keeping calm.  Trusting that the Lord who calms the seas can not only get me from this evening to the morning, He can get me through all of the stormy days of my life.  Oh Lord, care for my beloved Stevers as well and restore Him from the stress of riding things out in the rocky boat with me.  May we both keep our eyes fixed on you with amazement for all that you have done and all that you have yet to do in our lives.  Thank you for the help.  I will entrust you with the details as I lay them at Your throne of grace.

Goodnight all,  Just Julie

Psalm 121

psalm 121 3

Wolfie, the bee and me

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You might think that an Advanced Master Gardener who tested as understanding about garden insects would be a little less squeamish about bugs than the average person?  Er, no.

You might think that scaring the wolf spider who fled under the passenger’s car seat, and the “barrier” of the light of a flashlight and a floor space clear of travel garb in which to hide would make the back seat a safe haven for the 6-hour drive home?  Er, no.  I opted for the trunk of the station wagon!

You might think that I’d be used to a sweat bee pestering us at the outdoor dining patio of a small town restaurant since it’s a common phenomena for late summers in Indiana?  Er, no.

And you might think that the gnat in my wild rice was no big deal since I only planned to eat 2 tiny bites due to dietary restrictions; I’d already eaten them so I shouldn’t care right?  Er, no.

Yeah, you might think that a 15-hour road trip to pick up my River Bear husband’s new kayak would be uneventful for the dutiful wife passenger . . . er, no!  For me it was the little things that meant a lot when they were crawling and flying too close to my personal body parts, facial orifices, and comfort zones!  Perhaps the 7 or so tic and seizure attack zips during the afternoon put me a little on edge for the first leg of the trip from Fort Wayne, Indiana to Erie, Pennsylvania.  I had brought ample snacks, blankies, and a pillow for maximum cushy; the lush countryside as we travelled from the flat soybean fields of our homeland to the foothills of the Appalachian Mountains made for ample eye candy in between rest stops as well.  I guess I didn’t do so well after all.  I just wonder why spontaneous adventures like these can no longer be, er, “normal?”

Sorry for the down mood.  I spent most of the day in bed today recovering from our day trip.  Gratefully, Steve has a beautiful Epic V12 surf ski in mint condition now, for a steal-of-a-deal price:  $500 below the boat he sold to get it.  My guy sure knows how to trade boats!  As for me, I missed attending a meaningful wedding this afternoon with my beloved and many of our friends from church; I had more tic attacks and convulsions plus an additional 4 1/2 hours of sleep instead!  I woke up worthless except for the intact ability to cruise the internet in bed for hours.  Gratefully I’d made dozens of veggie turkey burgers two nights ago to sustain me with the intermittent, partial bag of Beanitos chips.  Ahhhhh, such is the life of a person lost in the recovery from Lyme Disease.

So where am I now?  I’m more stable as I’ve passed my bewitching hour of 9 to 11:00 p.m. when I usually have a noxious episode.  Thank the Lord I already covered that one earlier today!  My husband has graciously attended to some house chores and provided an occasional kiss of encouragement here and there.  I, too, would have liked to have hidden in the dark under the “seat of life,” buzzed about aimlessly until I found what I was looking for, or curled up next to the softness of a mound of carbs . . . I guess from here I will proceed otherwise.

It’s time for me to crawl like the slow-moving sow bugs on our hardwood floors, before the Throne of Grace.  I need Jesus.  I need an infilling of the Holy Spirit, nothing else.  I need to go it alone at what ever miles per hour it takes to drive home into my heart that this too shall pass.  My thoughts need softening and only the Lord can bring this gently, lovingly, perfectly.  Oh my Jesus, meet me here this night.  Let there be Your light and nothing else.  Thank you Lord for hearing me.

Just Julie