Tag: seizures

A different kind of measure

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The risk of including the Seasons of Love You Tube video from the movie RENT in this blog is that this song will now be in my head for days and days!  Well maybe that’s not such a bad thing, eh?

There’s so much Avant guard in this movie that I must warn you that it is not for either the faint of heart or for those who limit their recreational viewing to strictly Christian genre.  This is fringe media at it’s best.  This movie recognizes that love exists in other forms in life.  While I do not want these other forms in my personal life, I do recognize that this kind of “love” provides some meaning for persons who do not understand the perfect love that comes from a relationship with Jesus Christ.  Hopefully persons like the characters in this movie will find that wonderful unending and pure love someday.  It’s worth the journey to seek something more than what you can see around you.  It’s a different kind of measure of “love” for sure that extends beyond any season of life.

What I also love about this movie is the passion for life of the characters represented.  I have lost most of this passion with the onset of illness 2 1/2 years ago.  Sure I might get excited about a small project or celebration here and there but I am never very far away from a wretched episode that takes the “life” out of the moment.  Today was one of those kind of days.  The weather was beautiful.  As a matter of fact we have had a beautiful Spring here in the Midwest with adequate rain for the landscape and farmers mixed with incredible 70-80 degree temperatures and plenty of sunshine.  Most days have had some moments of clear weather, making way for virtually all activities outdoors even if for a few hours.  Enjoying 2 weddings and related activities last week were largely met with a backdrop of blue skies.  For this we remain grateful.  The unfortunate reality of today for me was the sprinkling of wretched episodes of seizure attacks every 2-3 hours.  I don’t even know why they happened.  We have removed the known triggers in our home and in my diet yet here I am living in shorter moments of time within which I can function.  Such a bummer.  It’s a different kind of measure of life as most of us define it.  It is life measured by moments.

In particular I love the lyrics of this song because it describes how I must live my life these days.  “In daylights.  In midnights.  In sunsets.  In cups of coffee . . . ”  You can see that I live my life by the task, not necessarily complete activities.  For example the walk I am grateful to have taken with my beloved and our pup this evening required a standing rest break for some noxious symptoms.  We then proceeded home at a slower pace and with me dragging myself along with a somewhat altered gait.  Sish.  Can’t a girl get a break?  I’d love to get back into exercising regularly; I am grateful for a few minutes that the Lord has granted here and there late at night when I’m more stable.  That’s what I mean by tasks.  I guess that’s all I can do right now are some tasks with a few modified activities in the mix.  It’s a different kind of measure of “doing.”

So if this moment is all I have with you Gentle Reader, I invite you to take 3 minutes to watch the You Tube video.  Think about your day today as you hum along or maybe consider the one you anticipate tomorrow with a new perspective:   a different kind of measure.  And if at all possible I do hope you will measure it in love, treasuring the love relationships in your life above all else.  If you should choose to include a personal relationship with God in that collection, perhaps putting Him in His rightful place above all the rest then I assure you that the abundance of love that will return to you will be immeasurable.  Seriously.  He is infinite so His love cannot be measured!  I tell you that His love makes a difference for me on a Sunday night like this.  I pray that His love will make a difference for you too in this moment and all the rest to come.  :J

The Sequel: Same story different day

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Don’t you just love a good movie?  The kind where you cannot predict the end until it ends or one where you find out what happened to the characters from the first of the series?  Yes, everyone loves a good story with a happy ending.  As for me, I’m just glad for happy moments!

I decided that it was time to update my video log of the most challenging aspects of the illness I am battling.  Included in my “sequel” are some photos of happy moments and some notes meant to be of encouragement at the end of the story.  Overall I admit that it’s kind of tough to watch.  Sometimes my beloved, Steve, and I (in our attempts to cope with this daily saga) get into a numbing routine where I go off into a back bedroom for a wretched episode then he comes by later to check on me.  I’m safe in bed:  I won’t fall out or anything like that.  He prays as he endures the horrifying vocalizations echoing throughout the house, knowing that there is virtually nothing he can do to lessen the burden.  We simply ride it out until the next one comes along, whenever that may be.

Gratefully we have discovered some things that consistently trigger the seizure-attack episodes or make them worse.  We don’t do these things where possible!  I mean that with nine gatherings last week in celebration of two weddings it was pretty tough to eliminate all extraneous factors.  We did our best.  I made it through five events relatively o.k., was Skyped into another, left two early, skipped a reception, and was carried away from the second to last event after the introduction of the happy newlyweds.  Not bad for a massively ramped up schedule and for someone battling Chronic Inflammatory Response Syndrome.  Or is it Lyme disease?  Biotoxin illness?  Non-epileptic seizures?  No one really knows for sure.

So here it is.  No popcorn needed.  A tissue might be worthwhile.  All prayers are welcome.  I am looking forward to the day when this illness is resolved.  In the meantime I stand on the Rock of my salvation, trusting in my Lord and Savior Jesus Christ to go with me and deliver me in due time.  One day in this life or in heaven, I WILL BE FREE.  It’s the promise in which all of us who call upon the name of the Lord can rest.  Thank you Jesus for your amazing grace.

Time for a nap!  J

When you find your voice again

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Perhaps it is a silent presence, a type of mindfulness that can speak as loud as a mountaintop yodel in a life-changing moment.  Or maybe you must shout it out, screeching through a resistant case of laryngitis just what is on your mind.  Then there are those measured words spoken through gritted teeth; oooooh, I hated when my mother uttered those when I was a child!  A crazy person makes sense only to his or herself when the disemboweled utterance emerges from the trouble soul within.  And the most agregious is the spine-tingling barbs of an angry person that can cut to the heart every time.  Sure wish I had more of the first one and less of the others in my history!

A gentle answer turns away wrath,
    but a harsh word stirs up anger.  (Proverbs 15:1)

Yes indeed.

The seizure attacks came quickly this evening as soon as my face hit the head of the bed, elevated with folded blankets to promote sinus drainage and ease the chest compression of a recent infection.  My left arm was tucked along my left side with my head turned to the right as I lain partially face-down.  This position causes less neck and shoulder pain so it is often my go-to position when I sense the episode ramping up.  The head-banging and shoulder trauma are minimized but the wrenching of my neck is nasty.  Oh well, that’s what the chiropractor is for, right?  Sigh.

Eventually I screeched out some “help me Lord” utterances with what was left of my voice box today.  That came whilst straining to cry out to my Jesus with an acute illness on top of the mysterious seizure-like tics that plague me every morning, evening, and after exposure to noxious stimuli.  I can’t even cry right!  Then things got incredibly darker.  In defense of my sanity I won’t go into details here so let’s just say that frightful images passed through my mind.  Then in my mind’s eye I could see the images on my arms.  Just then I noticed that Steve was stooping over the side of the bed beside me in the dark.  Holy crap!  His sudden appearance in the dark scared me further.  My body writhed with seizures, now lying on my right side with Steve behind me.  My arms flailed in the air, my legs flapped together then apart, and the screeching sound of my hoarse voice screaming holy terror would exceed any scene I’ve viewed from a psycho thriller for sure.  But this was not a movie.  This was ME!

A few decades ago some really bad things happened to me when I was a kid.  I spent about 12 years as a young adult in many kinds of therapy, therapy groups, 12-step recovery groups (Al Anon Adult Children of Alcoholics), faith-based and 12-step weekend retreats, and reading tons of self-help books.  True healing came when I got saved and the person of Jesus Christ showed me his love, care for me, and plan for my life if I would follow His lead.  He was restoring the years the locusts had eaten (Joel 2:25) when I met my intended beloved and married Steve.  I felt happy and free at last.  Four years later I got very sick with viral hepatitis, Lyme disease, and Chronic Inflammatory Response Syndrome (related to mold).  I haven’t been able to work in two years largely due to the seizure attack episodes multiple times per day.  They are heartbreaking for both of us in addition to many other folks who have witnessed them too.

Over and over again I have searched for meaning, a purpose for this extended illness.  The incredible expenses of remediating our home for mold in early 2013 surely tested our marriage for sure.  We were living in a hotel while navigating a myriad of details and tough decisions as Steve travelled between work, home, and the hotel; his daughter chose to continue living in the house and help us out during the entire process.  Eventually our dog joined us in the hotel.  Eventually we completed the remediation, opted not to sell our house, and moved back home.  However, the seizure attacks never stopped!  By summer of 2013 they increased to up to 4 hours per day!  No medical professional or online research has found an answer yet.  Somehow Steve and I grew closer through it all as our hearts were breaking; the pain and suffering has been great.

Recently the Lord did show me a few tasks that needed to be completed in our marriage.  The love between Steve and I over these past 2 1/2 years has become strengthened, deepened because of this difficult journey.  We have now turned our residence into a “safe home” which restricts visitors or the conditions under which others may enter our home.  This helps prevent exposures for me that could cause a negative reaction (aka seizures!).  I love that my beloved is helping to protect me in this way so that I can get well.  I love that he has been faithful to the Lord and to me through this entire journey.  Others are watching us and I understand that we are doing some things right!  My own restoration and healing from the past may have provided a foundation for the important growth in me that has happened of late.  I am grateful to be able to recognize the good that is here along with the challenges.  There is always good along with the challenges if we look closely enough . . .

Back to the scene in the bedroom.  I asked Steve to move from where he was stooped behind me to the other side of the bed where he would be in front of me.  The uncontrollable hell that was ravaging my weakened frame was frightening enough not to have a sense that someone, even someone I dearly loved, was lingering over me from behind.  Steve knows all too well that if he touches me during an episode it can magnify the symptoms significantly.  I just couldn’t risk a casual brush of a hand; my distress was already unbearable.  Then the breakthrough began to happen.  Speaking up despite the hoarseness of my voice rose up some inner strength I had never sensed before.  I had to ride out the frightening images and thrashing about, my estimation of what weeping and gnashing of teeth might be like in a Biblical description of hell.  Tears came.  Silence followed.  I was able to ask for what I really needed when scared.

Soon my gracious and godly husband was gently sitting beside me.  I’m not sure if he was more horrified or moved to compassion!  We processed the scene.  His eyes held mind for a long time in the darkness before I was able to reach out and touch his arm.  Soon he was able to reach out with comforting touch for me as well.  Somehow we knew that my intolerance to intimate touch for the past 6 weeks was finally broken.  I was able to lie in the arms of my beloved once again.

My writing this story includes a great deal of literary and intellectual license.  I mean that I think I might know what is going on, the purpose and meaning in some of this suffering, but there is only one person who actually knows the truth:  my Heavenly Father.  I am glad that I found my voice in the darkness this evening.  I am glad that I survived a wretched scene without too much damage or lingering baggage.  I am grateful to have reconnected with Steve and that he could look beyond the ugliness to the beauty imbedded in this crazy journey together.  I trust that the Lord will go before us in the next scene and lead us in His way everlasting for His purpose and glory.  Lord willing it won’t be so bad next time.

Thank you, Jesus, for your redeeming grace.  You make all the difference in the world for me, tonight and always.  Thank you for your enduring mercy, giving me have the strength to do that to which you have called me (Philippians 4:13).  Be my voice in the darkness and in the light.  In Jesus’ name.  Amen.

 

The How Long Song

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11 With this in mind, we constantly pray for you, that our God may make you worthy of his calling, and that by his power he may bring to fruition your every desire for goodness and your every deed prompted by faith. 12 We pray this so that the name of our Lord Jesus may be glorified in you, and you in him, according to the grace of our God and the Lord Jesus Christ.  2Thessalonians

You just never know who might be praying for you at this very moment.  If you have let your needs be known to anyone who is faithful to pray on occasion, it is very likely that at some point in time you are being lifted up before the God of the universe for His gracious care.  We might never know when that moment occurred or what was said.  We might feel a lightness in our human spirit or we just many never feel much of anything except our suffering.  But we can know this for certain:  that the God of the universe, the one Who made you and me, was listening at that moment.  His heart moved with compassion as your name came before His throne of grace that day.  And His thoughts towards you then and now outnumber the grains of sand on the earth (Psalm 139:18).  He loves you and me so much more than we can ever, ever imagine . . .

Our Heavenly Father has His hand on us.  His hand both reaches out to us and carries us through the mire in our lives.  We know that all things work together for good for His own, even the suffering.  Sometimes we get to see this in our lifetimes and sometimes we do not.  Our awareness doesn’t change the truth of the matter.  He is in charge and will use our suffering for His glory:  a greater purpose than our own lives (Romans 8:28).  Wow.  We may be relieved, blessed, redeemed, or justified too as he pours out His goodness.  We must hang in there for we cannot know what the next moment or next day may bring.  Even when the troubles continue on and on, in the words of Job to the Lord,

2 “I know that you can do all things;
    no purpose of yours can be thwarted.
3 You asked, ‘Who is this that obscures my plans without knowledge?’
    Surely I spoke of things I did not understand,
    things too wonderful for me to know.

4 “You said, ‘Listen now, and I will speak;
    I will question you,
    and you shall answer me.’
5 My ears had heard of you
    but now my eyes have seen you.
6 Therefore I despise myself
    and repent in dust and ashes.”

This is such an incredible witness of humility coming from a man covered in oozing boils, having lost all of his earthly possessions and children as well.  I cannot imagine such suffering even on my worst days.  Despite the episodes of wretchedness that continue to plague most of my mornings, afternoons, and evenings  I will remain faithful to my call to love Jesus and trust in His plan for my life.  Otherwise this journey of mine could be deemed meaningless.  Suffering for nothing is the alternative.  Holy cow, that would never get me out of bed in the morning!  A searing post-seizure neck headache and global pain puts the creamy taste of even the best bulletproof coffee down the drain every time.  NO WAY!  Only the promises and reassurance of my Lord and Savior are enough at these times.

The only way for me to endure the stress of my life at the moment is to let Jesus take the wheel.  Sometimes I just sit and stare for many minutes at a time.  Sometimes I am not “productive” in a day until what others would call dinnertime.  And sometimes I get a few things done then go back to bed for a long time.  Graciously there are a few other times of late when I can get up earlier while it is still morning and remain out of bed for the rest of the day.  Hey, I might be getting better after all!  I used to go to bed between 3 and 5 in the morning!  That pattern is generally broken and for that I am grateful.  Like my Grandma used to say, I’m getting there, “slow but sure.”

The How Long Song must leave my vocabulary.  Like the Ann Lander’s article quoting Robert Hasting’s article called The Station, we will “get there” when it is time.  Life is about the journey dontcha know?  Further, we will “get there” when the Lord wills it.  My job is to endure well, the journey I am called to take, seeking His will and keeping an eye out for His fingerprints along the way.  Let me not miss any measure of His sweetness in the sound of a calling bird or the bloom of a wildflower in unexpected places.  He will never lead me astray (Hebrews 13:5) and never require more of me than I can handle (1 Cor 10:12) with His grace.  He is with me now and until the end of the ages (Matthew 28:20), the end of my life.  That is reassuring indeed.

I’ll close with an unexpected blessing that has come right in the thick of all things stressful over here.  Twenty minutes of bliss.  Cool beans, eh?

Julie and Kinsey cruising along in the tandem outrigger canoe!
Julie and Kinsey cruising along in the tandem outrigger canoe!

And then you just hope to move sideways

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Here’s a brief update on my brother, Michael, and me with a prayer request:

At this moment Mike is moving from an acute, inpatient rehabilitation facility to one of the lowest-rated nursing homes in the city of Detroit.  The social workers claim that of the 35 facilities they have contacted, St. Francis is the only one who would accept him.  The reason?  He is “Medicaid Pending” and does not have any other insurance.  We are sad and concerned.

Today Mike’s rehabilitation stops until Medicaid is approved.  Today Mike learns how the indigent of our society are left behind in facilities located across the street from an abandoned buildings in scary neighborhoods.  Today Mike decides whether or not he is a FIGHTER.  I only got to talk to him briefly before the transport vehicle came to wheel him out of his private room and begin the next leg of his recovery journey.  He has made tremendous gains in cognition, swallowing, self care, transferring from one seat to another, and even walking.  Mike has had close monitoring of his medical condition, medications, and test results.  The plan to address a complex cyst on a kidney remains unclear as he moves away from his rehabilitation and medical specialists.  None of them go to the new facility.  It is unlikely that he will receive any rehabilitation therapies from this point forward until his Medicaid is approved.  We are sad and concerned.

We are hoping that this transfer is a move sideways and not the beginning of a downward slide.  At this point I do not believe that he knows that he will be receiving fewer services.  He is concerned about the facility location and the comfort level of his fiancé visiting him in an unsafe neighborhood.  Gratefully our cousin, Lisa, is an optometrist who sees patients there every 6 weeks.  She has known the staff there for 10 years.  We are hoping that this helps place Mike in a favorable light.  Lisa has also offered to accompany Mike’s fiancé, also named Lisa, on her first visit to the new place.  I am exceedingly grateful for this.  I wish I could be there too.  I cannot go at this time.

I had my own questionable “move” this past weekend.  Difficulty breathing and bizarre, violent seizure attack episodes landed me in the emergency room.  I received “treatment” and returned home; the last three days have been marginal yet better in some ways.  I saw my family practice physician yesterday and was able to put together a few plans to tighten up my treatment plan.  Unfortunately I had to escape outside for fresh air THREE TIMES due to the mold aerosols in his water-damaged office building!  Did I mention that I was already wearing a charcoal mask?  Geez.  I was re-reading the Clinical Summary this morning from my visit and collapsed at the kitchen table into a pile of seizure-like tics.  Perhaps the aerosols followed me home on the porous copy paper?  Who knows.  My gracious husband has seen me through it all, threw out the papers this morning and opened the bay windows to help me revive.  Thank you my beloved Steve!

Sometimes it looks like things are going downhill when actually we have just stepped a little to the side.  Many hidden blessings have come from my brother’s stroke:  developing a closer relationship with his fiancé, rekindling a friendship with my amazing cousin Lisa, and seeing a few family members step forth to love on my brother are wonderful.  And in my own situation I now have a biotoxin illness doctor who is willing to go to bat for me when headed to the ER on a Sunday in addition to an incredible husband who is my kinsman redeemer.  Steve is willing to love me, care for me, and defend my special needs when needed on my journey to wellness.  He believes me that this crap-ola-ski is NOT all in my head and is helping me overcome it too.  In both my brother’s and my own situation, I am seeing new expressions of love that have not been there in our lives before.  Cool beans.  Thank you Jesus!

Gentle Reader, would you kindly pray this scripture with me?  I pray that we will lean on the Lord, trust in the Lord, and have courage to move forward when-and-as the Lord leads these next few weeks.  I need to rest in the tender care of my Jesus and not get ahead of the work He is accomplishing in today.  After all, I do not want to miss the richness of His tender care, His presence in each breathing moment.  Such a joy it is to know that He is here carrying Mike this afternoon in that transport van.  Such a joy it is to know that He is here too with me and you carrying our thoughts and prayers to our Heavenly Father for His wise care according to His Divine plan for our lives.  Perhaps sideways is a good place to be right now.

Want some bulletproof coffee?  Let’s go out on the patio and sit for awhile.  The sun is shining this afternoon and the narcissus, tulips, hyacinths, and buttercups are blooming!

Proverbs 3:5-6
Proverbs 3:5-6