Tag: neuro Lyme

The Nurse Who Wore Perfume

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Nurse Ratchet from One Flew Over the Cuckoo's Nest
Nurse Ratchet from One Flew Over the Cuckoo’s Nest

After about 4 hours breathing fresh oxygen being pumped with fluids, I revived after a most bizarre episode.  The Benedryl made things worse yet brought about 12 hours of slumber on and off into the next day.  Whew!  What an ordeal it was . . .

Such is life when battling biotoxin illness, multiple chemical sensitivity, mycotoxicosis, Chronic Inflammatory Response Syndrome, or what-is-formerly-known-for-me-as Chronic Lyme Disease.  On Saturday I was counting the dollars and quarters from the neighborhood girls who bought friendship bracelets at our garage sale.  I noticed a familiar perfume scent on the money that reminded me of a houseguest not long ago.  Perhaps it was Flora by Gucci again?  Anyways, no sooner had I zip-locked everything into a sandwich baggie when I started to feel sickly.  Bizarre and violent seizures followed, ramping up and ramping down over the next hour.  Holy crap!

I knew I had overdone things somewhat working the garage sale and doing some yard work the day before.  But hey, we had some things to get rid of and were delighted to pass some items along for free.  The girls who bought the bracelets were adorable!  I couldn’t resist letting my initial Trinity Jewelry by Design originals go for 1/6 the original asking price just to see the smiles on their faces.  Of course the older sister next door would need and extra one for her sister who was away at a dance competition so 2-for-1 would be the best deal for her.  Same thing applied to her sister’s best friend who was in the midst of a little object lesson about not taking money from her mother’s purse to buy bracelets!  Lesson was learned and we had smiles all around.  I was so delighted to send them along and tell them the significance of the 3-bead design (for the Father, Son, and Holy Spirit!).  They looked down at their bracelets like they were hearing it for the first time.  That’s cool.  As they wear them each day I pray that the Lord brings more promptings of His love and gift of salvation through the Holy Trinity.

It’s Monday, I am breathing better today, and I feel reasonably stable.  The windows have remained closed as every-other neighbor seemed to be getting their lawns treated today with fertilizer and pre-emergent weed killers.  Ah the scents of Spring!  All fragrances don’t seem to bother me but I am not taking any chances one day after an imaginary trip to the ER.  Imaginary?  Oh sure, it’s all in my head you see.  They gave me a repeat psychiatric diagnosis probably leftover from the last time I was there over a year ago.  It didn’t matter that my biotoxin medical doctor from Michigan graciously called the hospital on my behalf with an update.  Chronic Inflammatory Response Syndrome just isn’t on their radar.  The ER Doc seemed to give the impression that he was understanding that the difficulty breathing, obvious seizure attacks, and intolerance to the cold hands of the admitting nurse were related to CIRS.  It has its own ICD-9 code don’t you know?  I guess they do not.  Out came the “non-epileptic seizures” and “feeling nervous” diagnoses.  I never said I was feeling nervous!  The third diagnosis was “tremors.”  Yeah, tremors that make your head bang aren’t really tremors are they?

Non-epileptic seizures have TWO causes:  1)  biological and 2) psychiatric.  Most medical professionals ignore the first cause.  If they were psychiatric they would happen only when I am under stress or have a need for secondary gain (like attention or control).  Sorry Doc.  These episodes happen unannounced, unprovoked, and at happy times.  They started with an exposure to a cyanobacteria when kayaking in a local reservoir with my beloved and some fun people.  I love my life with Steve and in general.  I am so blessed and grateful for so much even during this time of illness.  Armchair psychiatry without a work-up is wrong.  Test me.  I have nothing to hide.  So frustrating.

Shortly before the completion of the IV fluid and Benadryl treatment, a nurse came into the room to announce that the nursing shift had changed.  She checked the monitor and recorded my vitals before leaving the room in a puff of noxious and cheap perfume.  WHAAAAT?  Why do you think I am in the EMERGENCY ROOM NURSEEEE POO?  When she returned I gently but firmly asked her to leave and not return due to the same.  She said she had received “report” and knew why I was there.  HELLO?  ANYBODY HOME?  Two other nurses came in a bit later and before the IV pump alarm was set to go off (another sensory trigger).  I appreciated their timing and thanked them.  A bit roughly they disconnected the IV, removed the IV in my arm, and began to hurry us along.  Time to go!  I had to ask them to wait a moment as my body started seizing from the shock of the needle coming out of my arm.  Hey, it happens every time a needle goes in or out don’t you know? I really can’t make this stuff up don’t you know?  It simply isn’t worth it and would take too much energy anyways.  Just look at the outpatient records from the 21 IV magnesium treatments at that same hospital this past October and November.  Same reaction.

I felt numb on the way home.  My incredible husband made sure I was settled and quickly got outside to mow the lawn before dark.  I ate a light dinner as fast as I could to gain some strength before giving into the incredible fatigue.  Tic attacks woke me up several times as I slept for about a half of a day total.  The ordeal was over.  My third trip to the ER since becoming ill October 11, 2011 was over.

What do I do now, I wonder?  I mean there are binding agents that I can’t tolerate (chlolestyramine and Welchol) and one that I can (activated charcoal) tolerate but the latter doesn’t register on Dr. Richie Shoemaker’s biotoxin illness protocol.  During a wretched episode earlier last week the Lord gave me some insight that the activated charcoal might work better for me.   So a few grains of AC is all I am doing for treatment in addition to my own election for a mold-free, Candida, low oxalate diet.  Oh yes, and our home will become a safe-zone to reduce exposures.  Sadly there will be no more monthly home group.  I spent the last one in my bedroom with seizure attacks while the group worshipped, prayed, and fellowshipped in our living room.  Even the hint of fragrance amongst them was too much for me.  Sigh.  I  need the fellowship Lord!  And what about the friends and family who will be in town for my husband’s son’s wedding next month?  This is a heartache for both of us right now.  I love Steve’s adult children and his family.  I am grateful for them.  I guess I’ll be Skyped into the bridal shower . . .  And I doubt that I will be able to enjoy playing hostess to family that has not seen our home beautified since they were last here for our wedding 7 years ago.  It’s just so very risky.  Maybe it will be warm enough to visit on our lovely patio.  Hope so.

Oh well.  We’ll figure out something.  We always do.  Better leave that one for a future blog.  More prayer is needed before then fer shur.  JJ

Father Save Me From This Hour

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Such was the cry of our Lord and Savior, Jesus Christ as He prepared to die a tortuous death on the cross at Calvary:  before His glorious resurrection and what we have come to celebrate as Easter.

The sins of the world hung in the balance that day, separating us from the love of the Father in heaven.  Until the time of Christ a Jew was required to bring sacrifices to atone for his or her sins and that of the family.  Bringing sacrifices, keeping the Sabbath, and a plethora of Jewish holidays dominated religious life.  These rituals and following the rule of law (including the Ten Commandments) was the only way to get to heaven before the death and resurrection of Jesus Christ.  Then God’s Word teaches us that He came to save the world if we but repented and believed in His saving grace, His death and resurrection.  He became the Passover lamb that was slain.  Gifts of eternal life, indwelling of the Holy Spirit, spiritual gifts, fellowship with other believers and more follows for those who come forward.  But it’s not all rosy living the Christian walk  . . .

Yes, there is much good in the world, much happiness in this life.  And then there is the bad stuff too.  The reason for the bad stuff is an important topic yet it goes in another direction than my discussion today.  Let’s just say that evil is here and it will always be here until Jesus Christ comes again.  When bad stuff happens, someone suffers.  Our Lord knew what suffering felt like as He was ridiculed, whipped within inches of His life, and sentenced to a horrific death for something he did not do.  He came into the world willingly from the eternal realm out of love for us.  Conversely, we rarely come to our suffering in the world willingly.  Our suffering comes as a consequence of living in a fallen, imperfect world as sinners.  Further, our suffering isn’t always fair.  Sometimes it comes when we are close to God, working hard, doing good, loving others, and making the most out of our finite lives.  Many times it just doesn’t make sense.

I just finished listening to a gentle message by the late Chuck Smith of Calvary Chapel Costa Mesa entitled, “Prayer of a Troubled Heart.”  Pastor Smith developed this topic better than I can so I would encourage you to listen to the audio sermon if the subject is on your mind these days.  I was comforted by his instruction that our suffering can be God working out eternal purposes in our earthly lives for our eternal glory.  If we could somehow change God’s plan for our lives we would be obstructing God’s eternal purposes.  “Even from the pain and suffering, eternal good is going to come.”  We can point to the life of the apostle Paul who endured physical infirmity and still carried or “deposited” the Gospel message to countless peoples throughout the known world of his time.

12 That is why I am suffering as I am. Yet this is no cause for shame, because I know whom I have believed, and am convinced that he is able to guard what I have entrusted to him until that day.

13 What you heard from me, keep as the pattern of sound teaching, with faith and love in Christ Jesus. 14 Guard the good deposit that was entrusted to you—guard it with the help of the Holy Spirit who lives in us. 2 Timothy 1

The apostle Paul encourages us to trust, to have faith in the Gospel of Jesus Christ no matter what our “light and momentary” affliction might be.   In light of all eternity, our time of illness is short indeed.

16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.  2 Corinthians 4

Relying on the scriptures brings the power of God into our weary hearts and minds.  We find stories of triumph over trials that encourage us.  Hebrews 11 describes several pillars of faith, empowered by God to endure, overcome, and bring glory to God as they saw His plan unfolding before their eyes.  Joseph was sold into slavery, imprisoned in a dungeon, mocked then ended up saving the nation of Israel from starvation as others recognized his Godly character and abilities.  There are many more men and women from whose example we can learn as well.

Drawing from the scriptures Pastor Smith guides us first to pray about the things troubling our souls.  Second, we are to “reason” that God really does love me and is wiser than I am.  I am not to base my understanding of His love for me on my circumstances but on who He is.  The events of my life work out His eternal purposes for both me and those around me according to His Divine plans for good, for His glory.  And third, I am to commit myself unto the will of the Father knowing that:

We know that in all things God works for the good of those who love him, who have been called according to his purpose.   Romans 8:28

This is difficult to do!  If it’s too difficult then I must first ask myself:  in whose strength am I trying to get through the suffering?  Do I keep asking the Lord to do this or that for me versus asking Him to help me?  Reveal His will for me?  Encourage me with His grace?  Strengthen me to endure?  Submit to His will knowing that His good is coming?  I must put on my eternal glasses even if I cannot see anything beyond my situation.  I need to ask Him to increase my faith and He will do it!

This insight came together after another and extremely wretched evening.  Only once before have I completely collapsed without warning at the kitchen table requiring my husband to catch me from falling.  Moments after he carried me to bed I cried the most guttural tears of my entire life.  The most violent convulsions I have ever experienced followed.  Steve prayed then cried too.  It seemed to me like I was “weeping and gnashing (my) teeth” as the Bible describes for those in hell.  It took a long time to recover.  I still do not know why all this suffering is here for me and Steve.  I do know how I am to handle it, however.  That insight came earlier in the evening.

Unfortunately I never was able to join the home group discussion in my own home tonight.  After welcoming our brothers and sisters in Christ and setting aside the goodies they brought for later, I attempted to walk to my seat in the living room.  I was aware that my speech had become strained already.  Then all of a sudden I felt sick:  the pre-tic set of symptoms ramped up quickly indicating that what was coming next would not be good.  I whispered into Steve’s ear from behind where he was sitting on the sectional that I wasn’t feeling well and scooted off to our bedroom.  As my head was hitting the pillow the seizure attacks began!  They were bad.  They persisted with vocalizations that risked alarming our guests down the hall.  Soon I heard a guitar playing and people singing.  The worship had begun and the sounds would cover my episode.  Thank you Lord.

I had hoped that the music would also quiet my tender frame in torment.  Not so.  The episode quieted into tic attacks and I was able to breathe more easily.  In my spirit I cried out to the Lord to stop the episode.  I feared many scenarios that could happen next in which others would end up horrified, witnessing some aspect of the seizures.  Our master bathroom toilet was out of commission for repairs requiring all of us to use the bathroom in the hallway between where I was in bed and the living room.  If I collapsed and was unable to walk, Steve would have to physically assist me to the bathroom partially in view of where everyone was sitting.  I would first need to scream to alert him beyond the closed Master bedroom door.  Nothing would be pleasant about the fact that I really needed to use the bathroom down the hall from me  . . .

It’s as if the Lord was sitting right next to me in that bed at that moment.  It’s as if I could see the slight scowl on His face as He “looked” me directly in the eye and wondered why I was telling Him what to do again.  Had He not been with me in prior episodes?  Had He not used this illness to reach thousands of people around the world with the Gospel through this blog?  Had He not gifted me to write and create in ways that brought joy to my heart even in the middle of the night?  Had He not provided for both Steve’s and my needs these past 2 1/2 years?  Helped me become an Advanced Master Gardener?  Strengthened Steve to win his first national kayaking award?  Yes, He had worked in both of our lives incredibly despite the extreme suffering.

No one in their right mind wants to suffer.  I don’t like this wretched illness and long for it to be over.  Yet if I miss the teaching moments that come along the way then this suffering will be no more than an endurance race with no prize, no glory, no hope, no real encouragement for others who will come after me.  The lesson I needed to learn this evening was to simply ask for the Lord’s HELP and let HIM do the rest.  He knows why this episode was timed during the heart of our home group meeting and I do not.  I need to trust Him on this one as I have during so many times of need in the past.  His answers, His timing, His purposes have encouraged me more times than I can describe here in addition to numerous other people watching the events unfold.  As Pastor Smith describes in his message:  I do not want to obstruct God’s eternal purposes that will be for my good and His glory!

I must persevere in faith no matter what the cost.  He will strengthen my faith.  I must ask my Heavenly Father in the name of Jesus Christ for help then wait on His leading, His answers.  Jesus Christ did this very act of submission before the Father when Jesus was praying in the Garden of Gethsemane knowing that His torture and death were imminent:

42 He went away a second time and prayed, “My Father, if it is not possible for this cup to be taken away unless I drink it, may your will be done.”  Matthew 26

The God of the universe, living among us as a man yet fully God, submitted to the will of the Father, the purpose for which He was born into the world.  He cried out for the Father to save him from that hour in crisis, for help.  Most importantly He then submitted to the will of the Father and the world changed forever because of it.  I will live a life eternally with my Jesus because He died on that cross for me.  My time of suffering is not too much to bear with His help to live the life to which I am called.  Sure it feels like hell.  My faith transcends my broken frame and will bring an eternal reward that goes beyond my temporary affliction.  With this I can go on.

What say you, Gentle Reader?  He loves you too you know . . .  Might you call on Him too?  It just might rock your world in a good way.  No kidding.

 

All You Need is Love

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Sometimes you just need Jesus with skin on, ya know?

Tis quite humbling to find true love in the midst of the most wretched time of my life.  Even the worst of the trauma of my childhood cannot compare to the wrecking ball-like experiences of violent, waking seizures every day.  During the bewitching hour of night my beloved often lingers nearby, checking in periodically or lies next to me to warm my chilled, freaking out frame.  Perhaps he has carried me to the bathroom moments earlier or fed me some water to drink in my listless state after an episode.  And then comes the silliness that only a River Bear can muster in the midst of yet another crisis.   Seriously!  He finds a way to laugh in the midst of it all.

Sometimes you just need Jesus with skin on and I am exceedingly grateful love my Steve every day.  Making his lunch bag for work or cooking dinner a few nights per week is my meager contribution of late.  Sometimes I can do housework, grocery shop and laundry too; not so much lately.  It doesn’t seem to matter to my husband though.  He appreciates any of it and celebrates when I can get out and walk the dog or create a piece of jewelry instead of completing the chores.  Peanut butter and jelly sandwiches seem to fill his belly just the same!  What further amazes me is his compliments and words of encouragement when I am at my lowest.  I have never known this much love from anyone before Steve!

To those Gentle Readers who are single:  be the partner for which you seek and wait for the one who will love you above all else after the Lord.  I found Steve after 47 years of living and after kissing a few frogs along the way!  Oh well.  Sometimes you can’t tell a prince from a frog until it’s too late!  Yet when we trust the One who knows and numbers each hair on our pretty little heads, He will bring your night in shining aluminum*, or is that armor (?) at just the right time.  The trials and adventures of life come alive when shared with your intended beloved.

I used to say that I could make a relationship out of anything.  I was dumb and wrong.  Settling for less only brings heartache.  I now see too how the Lord empowers me to love Steve beyond my earthly capabilities and he must be doing the same for Steve as he loves me too.  In doing so we are drawn even closer together.  How does one prepare a lunch bag, clean up the kitchen at 4:00 a.m., and make it back to bed when sickly, nauseous, twitching in pre-tic episodes, etc.?  (How does Steve work full time, serve and worship at church, attend to household tasks, and keep up with athletic endeavors after staying up late with me?)  By calling on the Lord to add His increase, He brings blessings beyond the tasks at hand.  As for me, on particularly bad days I don’t do much of anything.  The look in my eyes is all I can give, to say how proud I am that my husband goes to work each day for us, or for me to muster up the strength to take a shower and wear the jeans he likes the best.  It is enough.  It is love.

Thank you Steve.  Thank you Lord!

Steve and Julie looking out over Lover's Leap, Starved Rock State Park, Illinois
Steve and Julie looking out over Lover’s Leap, Starved Rock State Park, Illinois

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*  The “night in shining aluminum” story stems from the theme of many romance novels:  the dashing young man will eventually scoop the young maiden into his arms and carry her off into eternal bliss as the sun sets.  I believe I had a similar experience the day of my move from the west suburbs of Chicago, Illinois 200 miles east to be with Steve in northeastern Indiana.  We met on Yahoo Personals and had a fairy tale long distance relationship for longer than my Prince Charming desired.  Each time we parted to make the long drive home he would tease me about running off to be with him in Indiana!  The tell tale moment finally came on moving day in November of 2007.  The movers had packed the 24-foot box truck with all of the earthly possessions from my beautiful condo near the Dupage River.  We were standing in the parking lot about ready to go when he popped the question.  Steve looked at me and said, “Julie I’m going to ask you one last time:  will you come away with me to Indiana?”  I jumped into his arms with a resounding “YES” and off into the beast of shiny aluminum we went!  My prince had come for me at last . . .  :J