The Nurse Who Wore Perfume

 

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

Biotoxin illness not Lyme disease for me

As of yesterday and my second appointment with a biotoxin illness specialist, my hunt for healing will focus on biotoxin illness and not Lyme disease.  Perhaps you noticed awhile back that I changed the name of this blog?  Join me in finding “Hope Beyond” the challenges of today; for me this blog will always give the praise and glory to the Lord, Jesus Christ when victory comes . . .

I found a remarkable video on You Tube that summarizes mold and biotoxin illness.  Please look beyond the promo for his colleague’s book and his mentioning of “ME” or Myalgic Encephalomyelitis.  I do not have ME although I understand that biotoxin illness and ME are similar, much like fibromyalgia and chronic fatigue syndrome have similar manifestations.  Now that my diagnosis is clearer, I will be largely following the treatment protocol of Dr. Richie Shoemaker at:  http://www.survivingmold.com as coached by one of his trained physicians.

See whatcha think and let me know in the comments below.  There is hope!  Just Julie

A Call to Build

The prophet Haggai in the Old Testament had to remind the nation of Israel that the current day was as good as any to rebuild the temple of the Lord.  They were preoccupied with the day-to-day events of their lives, much like we have with some variations.  These days we have Twitter updates flashing or beeping us the latest trivial matters we used to not care about to the stress of keeping up with the accelerating pace of life.  It takes more effort than ever to SLOOOOOW DOWN and smell the roses.

Ooops!  Did I fertilize them with Rose tone when I cut them down on Saturday?  Shoot.  I better fertilize the William Battin climbers now because they are growing and wait to feed the Knock Out rose bushes since they are still dormant . . .   And off I go again . . .

When Pastor Paul Mowery preached on the book of Haggai recently he asked the congregation a question about the things we once promised the Lord.  What did I feel led to do as a young Christian or during a time of spiritual growth that I am not doing today?  What happened?  Was the inspiration transformed into another purpose or forgotten altogether?  Hmmmm.  Even when facing times of crisis this is a question that benefits from our reflection.  If all things work together for the good of those who are called according to His purpose (Romans 8:28) then it is possible to further our ministry purpose even in fast-paced or challenging times.  And for most of us, these are challenging, fast-paced times!

Some of you know that my brother (Michael) had a stoke 9 days ago.  Today Mike will be transferred from an acute cardiac/telemetry floor in a hospital to the rehabilitation unit.  We are encouraged by this news!  This means that he is stable enough to tolerate up to 3 hours of physical, occupational, and speech therapy per day in addition to having his funding issues largely resolved.  (He does not have health insurance and is applying for the Medicaid Extension Program.)  Mike continues on a “pureed diet” and “thickened liquids” (aka Pepsi!) with one-to-one feeding for swallowing safety.  He has not moved his left arm or leg yet since the onset of the stroke one week ago.  While his speech slowly improves, I understand that his mental status varies in the finer points of reality orientation testing.  This has delayed the filing of his Power of Attorney for Healthcare status needed in case of an adverse event.  And lastly, there’s a decision pending of whether or not he will have surgery to place stents in his carotid arteries:  with high blood pressure, the occlusions were the cause of the right CVA.  All-in-all, Mike is embarking on the next leg of a long journey of recovery; we are grateful that that next step is beginning today.

One of the most significant events from my visit to see him last Tuesday was his statement through garbled speech, “I need Jesus.”  When he said that I was speechless myself.  I was still responding to the horror of seeing my brother so severely disabled as he lain in bed with his waxy bed rest complexion, sunken left side of his face, catheter-and-wires attached to his skinny frame, and lifeless look in his eyes.  I had to dash into the hallway as my eyes flooded with tears!  The night before we travelled out of State to see him had been a nightmare anticipating that moment as it triggered residual grieving from the loss of my last grandparent, parents, and youngest brother over the previous 11 years.  So the the next day in the midst of my own emotions, my dear brother reminded me of what was most important.  Yes, “I need Jesus too.”

What Jesus has for Mike will of course be different from what He has for me.  Our health challenges are different yet both bring significant physical weaknesses.  The seizure attack episodes have increased to over 4 hours per day now with the worst ones occurring after waking up in the morning and after dark in the evening.  I can do nothing but lie in bed and ride them out.  I no longer can tolerate the high CBD hemp oil that gave me relief last month.  It doesn’t work anymore anyways.  Another medical doctor has set me adrift after only 2 months of working with him!  Gratefully there is a Dr. in his practice (a biotoxin expert) with whom I am scheduled to follow-up with next week.  Gratefully I have already completed the preliminary lab work she requires.  In the meantime I have about 6 hours each day where I can function at a reduced level.  And now in the face of my brother’s devastating stroke, I see how very fortunate I am.  I am optimistic for a full recovery from the biotoxin illness that I once thought was Lyme disease.  Sometimes it takes 2 1/2 years to find the answers for which we seek, and for which the Lord may bring.  It takes what it takes as I wait on the Lord.  And in the meantime I have built a firm foundation in trusting Him through what ever may come.  I didn’t say it was a perfect one!  It is solid in Jesus Christ and His Word.

Mike is yet at the beginning of building his foundation.  Indeed he will need Jesus to do the tasks ahead of him both for his own recovery and to be a wise steward of the love relationships in his life:  that with his fiancé (Lisa) and Lisa’s son (Alex).  Gilbert the dog should be fine.  🙂  I am sad that his journey looks insurmountable in the beginning.  The obstacles appear tremendous in the humble opinion of an occupational therapist on a medical leave.  All of my training is rushing forth wondering about the potential for new complications and very real permanent disability.  I am going to need help lying all of that before the Great Physician for His wondrous omnipotence and care.  With Jesus, all things are possible and Mike’s illness will not be wasted.  Mike has professed faith in the Lord, Jesus Christ.  The Lord will meet him on his bed of sickness and redeem it for His glory.  In that we can be sure.  (Psalm 41:3)

The call to build can be a frightful one in our own strength.  I submit to you that we cannot build anything of lasting value in our own strength.  The outward man and the trappings of the stuff of his life will fade away in due time.  Only things rendered unto the Lord and completed with His leading will last.  Yes, Mike’s call to rebuild his body begins today with a transfer to the rehabilitation floor of the hospital.  My own call to rebuild comes with revisiting the biotoxin protocol I discovered over 2 years ago.  He and I are like every one of us who faces the question of what will consume our time, energy, and talents in the next 18 waking hours let alone the rest of our lives.  So what will we do with our discretionary resources?  How much discretionary resource does each one of us really have?  And are we spending it for what will last or for what is, in the end, meaningless dust in the wind?

As for me, I know that I am called to write about my experiences within the context of the will of the Father in my life.  Writing poetry was my outlet ten years ago when I could hardly write a complete sentence due to my emotional pain.  Today I leave you with the words of the second wisest man (King Solomon) to ever live after Jesus Christ. I left these words in Mike’s room in scripted on a tiny plaque that encouraged me so long ago when faced with the task of rebuilding my life. May they encourage you too, Gentle Reader. Let us both begin to gather ourselves that which is needed to build something of lasting significance, beginning today.

 

 

Ecclesiastes 3:1
Ecclesiastes 3:1

 

Easter Then and Now

Psalm 130

A song of ascents.

Out of the depths I cry to you, Lord;
    Lord, hear my voice.
Let your ears be attentive
    to my cry for mercy.

If you, Lord, kept a record of sins,
    Lord, who could stand?
But with you there is forgiveness,
    so that we can, with reverence, serve you.

I wait for the Lord, my whole being waits,
    and in his word I put my hope.
I wait for the Lord
    more than watchmen wait for the morning,
    more than watchmen wait for the morning.

Israel, put your hope in the Lord,
    for with the Lord is unfailing love
    and with him is full redemption.
He himself will redeem Israel
    from all their sins.

Indeed He did redeem the nation of Israel as well as those of us adopted as sons, daughters into the nation of Israel.  When we stress about the sufferings of our days we can remember that the Lord is with us, redeems us, and will come again in glory for us all because of what happened one Easter morning long ago . . . .

These words encourage me during the most wretched of nights, which come every night.  These words encourage me as I witness the life that has drained out of my brother’s body since his stroke this past weekend.  These words encourage me as I ponder all of the loss and heartache during my half-century on this earth.  These words encourage me as I see His grace and mercy in the loving eyes, the comforting touch of my intended beloved who loves me so.  These Words are the Living God made real in my heart;  transcending this life and drawing me to my life everlasting with my Savior.  Because of Him I can see the blessings around me which hint at the life, the hope beyond.

No matter where you are or what life is handing you, Gentle Reader, be assured that His love extends to you too.  Easter Sunday is a celebration of the Lord’s perfect love.  He came from the utopia that is heaven to live as a pauper, suffer a tortuous death, and returned in glory when no one was expecting it.  We would not and can not do what He did for us.  And as we believe in the living sacrifice of the Lord Jesus Christ, we are redeemed.  Sorrow is replaced with joy from deep within our hearts.  All things are made new.  While my “outer man” is wasting away, my spirit is renewed day by day and will continue forevermore.

I look forward to the part of this journey beyond this life.  In the meantime it is my honor to say to you:  Happy Easter Gentle Reader.  With love, Just Julie

Cave Dweller That I Am

Yesterday I found out that my cousin, Lisa, has a tendency to keep the blinds in her house closed when times get tough.  Yeah, that’s me too.  Until we reunited over my brother’s illness, I did not know that she too battles fibromyalgia and a host of “female,” medical issues.  She is at the beginning of her search for treatment options.  We talked quite a bit about these and other family matters while sitting in my brother’s private room on the Telemetry floor at the Detroit hospital.  And so it goes at weddings, funerals and the markers of life in between:  catching up on relationships we are too busy to nourish when busy with the tasks of life . . .

Steve and I got home around midnight after our whirlwind trip to see Mike in the hospital yesterday.  (Steve had to work today and I’m allergic to hotel rooms anyways!)  I am both depleted and grateful for so much today.  Steve drove us the 6-hours round trip so we could see Lisa, Mike, and his fiancé (Lisa) while I endured seizure attack episodes in the car.  Our departure was a few hours late due to the same.  Divine timing superseded it all as we were able to see a physician familiar with Mike’s care during her evening rounds and before we had to leave.  As of today he has been cleared of any infectious disease cause to the right CVA; he continues nothing-by-mouth yet is getting his “Pepsi” substitute via IV glucose.  Pepsi is all he kept asking for . . . in addition to asking his fiancé to wish me a “happy birthday.”  Yes, I got to see my brother for the first time in years yesterday and on my birthday.  Strange but true.

Today I am back in cave-dweller mode.  The grief reaction of seeing him so debilitated is taking its toll so I am just lying low for now.  I tried out a new ceramic frying pan to make my Candida diet/mold-free/low oxalate blueberry pancakes and kept the beast of a skillet on the stove long enough to make lunch this afternoon too.  Perhaps I will shower before my husband comes home this evening and perhaps not.  The extra (stress?) seizure attacks and post-travel fatigue probably contributed to me missing the very chiropractic treatment I needed to relieve my sore back.  Oh well.  The Lord has given me the time and space I need to clear my head from the events of this week and that is good.  Catching up with other relatives today while sharing the news about my brother is good too.

My relationship to one cave dweller in particular is making a difference right now.  So poetic that all of this is happening in my life during the week that the world celebrates Easter.  Our Lord, Jesus Christ lain in state in a cave after dying a tortuous death on a cross for the sins of me and you.  We can point to Easter Sunday with hope that the suffering of our lives (the consequence of living in a fallen, sin-laden world) will be redeemed when He comes again in glory.  He who has victory over death both knows the cries of our hearts and holds them in the palm of His hand that reaches out to us in grace, in mercy, in love.  He is with me here now and goes before me no matter what the next moment may bring for me or Mike.  I am strong in this belief despite the weakness of my broken frame.  Nothing can take this away for those in Christ.   Nothing!

Cave Tomb of Jesus

So if you are feeling weak, vulnerable, fearful, doubtful, or sad this day:  take heart.  The Lord is on the throne of grace and weeps for our suffering.  He will come again in glory and make all things new someday.  In the meantime I hope that you will reach out to Him and let me know how it goes.  We all can be brought into the light of His amazing grace to dwell in His presence if we but believe.

Where does your heart dwell Gentle Reader?

Psalm 73

23 Yet I am always with you;
    you hold me by my right hand.
24 You guide me with your counsel,
    and afterward you will take me into glory.
25 Whom have I in heaven but you?
    And earth has nothing I desire besides you.
26 My flesh and my heart may fail,
    but God is the strength of my heart
    and my portion forever.

27 Those who are far from you will perish;
    you destroy all who are unfaithful to you.
28 But as for me, it is good to be near God.
    I have made the Sovereign Lord my refuge;
    I will tell of all your deeds.