When the time is right

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

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

And then there was a better night

Unbelievable!  To fall asleep without being tazored by seizure attacks.  To wake up without over 15 minutes of tazoring.  To start the day with just a trace of a headache.  To get outside and work in my garden in the morning!  To be looking forward to an afternoon nap in anticipation of a gathering with some friends at the home of one of them on a lake.  For this to come together on a beautiful day.

Yes, praise be to the Lord.  The last 12 hours have been relatively great.  Thank you Jesus!

The Old Makes Way for the New

Phillipians 4 Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9 Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

A broken vessel could be a metaphor for my life these 1 1/2 years.  Then again, I could just start from today, praise the Lord for His enduring Spirit, mercy and grace, then move on!  Since today is a new day, I’ll choose the latter.

Besides, if you look closer, you’ll see the buds on the branches of the lilac bush emerging from the broken vase below.  Can you see them?  They are the signs of new life that can come with each new day.  Noting that I cut these branches to increase the flower production on the plant adds additional meaning:  sometimes our lives must be pruned to free us for the blessings to come either in this life or the next.

For those in Christ Jesus, we know that he will work all things together for good (Romans 8:28).  We can trust him in the times of new growth, the times of pruning, the times of brokenness and the times of loss all the same.  Wow.  So glad I learned this when my life totally changed 10 years ago. Well I mean that it took 10 years to understand the transforming power of the gospel, working in the lives of His friends, His children, His people.  The Lord’s love and care is working in me too.

My hubby says that I should use a plastic vase instead of a glass one outside.  Yeah, he’s right.  Glad this episode of brokenness  is an easy one to fix!  I’ll let go of the vase, fill another with the waters of life and embrace the newness that is growing all around me.  (Reference:  see the second picture please!)

Hmmmmmm, I think there’s something growing inside me too.  Little by little, the illness I have is transforming as well.  Praise the Lord!  :J

DSCF7726DSCF7731