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

The Sister Bear Speaks

While my brother’s fiancé is there at the hospital with him in the thick of things, his next of kin is a bit upset.  I am too upset to make any rational decisions.  The feelings run deep with me.  It’s all I could do to be polite on the phone today to the social worker from the rehabilitation unit where Mike is hospitalized.  At least Steve and I have the weekend to sort things out . . .

Very likely Mike will get booted out of the hospital next week and sent to be housed in a nursing home without additional rehabilitation services.  His insurance is “Medicaid Pending” and his requiring of 24-hour physical care post discharge, a situation that cannot be met at home for valid reasons, is pushing the hospital to discharge him from their care.  I don’t get it.  In my 30+ year career in rehabilitation as an occupational therapist, the discharge criteria virtually always hinged on a lack of progress, not the particulars of discharge planning.  It’s a new day:  a new reality.  If you can’t do what the government-driven healthcare system wants you to do then I guess they can wash their hands of you.

Perhaps he will go to a nursing home or perhaps by some miracle the Veterans Administration (VA) will accept him on such short notice.  If the decision is the former, he will be fed 3 meals per day, kept clean and dry, and left to sit slumped in an overstretched wheelchair or geri chair in front of an out-of-tune entertainer from the long term care circuit with a pair of maracas shoved into his functional hand.  The wailing of the demented residents will woo him to sleep at night as he tosses on his waterproof mattress to get comfortable around the bedsores that no one will find until it is too late for healing.  Thickened Pepsi to drink?  Not a chance.  At least until his fiancé cleans up her make-up from crying long enough to ignore the swale of urine stench long enough to bring it to him.  God bless her faithfulness visiting every day through this incredibly stressful ordeal!

Or perhaps it won’t be that bad.  Maybe he will get into a VA rehabilitation facility with little red tape and get stronger.  Regardless, the hope of at least a few weeks of physical, occupational, and speech therapy has vanished for the time-being.  And Michael has no idea yet, what is about to happen to him next week.  I left a message for his saint of a fiancé and she has not gotten back to me yet.  Maybe she is in as big of SHOCK as I am.  Maybe she is exhausted and horrified from touring nursing homes closer to where they lived in the “thumb” area of Michigan.  I don’t blame her for taking a little time for herself to sort things out.  My heart goes out to Lisa.  She has been through so much these past two weeks as her life has changed forever.

As for me, 200 miles to the south and struggling with four hours of seizure attacks multiple times per day, I am overwhelmed with the stress of it all.  Just seeing the missing flooring in our bathroom from yet another mold remediation project is enough to stub my toe even when the light is on.  Somehow I completed a few errands outside the home this afternoon and made a simple dinner.  I talked to a few family members who offered mixed consolation while I was stepping on the elliptical for 20 minutes, phone in hand.  Geez!  I haven’t used that thing in a few weeks!  I must be stressed out.  Thank goodness the nightly seizure attack episodes haven’t fully ramped up yet tonight:  I needed to talk to you, Gentle Reader!  I started to type and there you were.  Thanks so much for being here.  I can barely speak I am so very upset.

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Life goes on despite the drama of the moment.  If Steve and I don’t impulsively drive 3 hours north to go to the hospital tomorrow and I’m stable enough, we will attend the 50th wedding anniversary open house of some friends.  It will be good to enjoy some Christian fellowship.  Then maybe my beloved Steve will start to work on the bathroom floor tile project and I’ll put together the jewelry orders that have been sitting at my work table this past week.  Lord willing I’ll continue with the Spring clean-up of our gardens and Steve will mow the grass for the first time this year.  Looks like the narcissus will be blooming within a day or two with their yellow-throated happy faces reaching up to soak up the sun.  The sunshine will feel good on my broken frame as well and I will enjoy the freshness of the air this time of year.  There’s no better hue of green than that of the tender leaves emerging from their Winter slumber:  truly lime, truly sublime too.  Some call it “horticulture therapy.”  Gee, maybe I should go right now poke my finger in the dirt of the violets waiting to fill the self-watering planters I thought I might plant tomorrow . . . I need a fix of something and a shot of tequila is out of the question these days . . .

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Please pray for us.  This sister bear is hurting more for her brother than anything right now.  My beloved Steve has been so loving despite the challenges of my illness, demands of his work, and his other responsibilities.  Lisa has got to be struggling as well, balancing work, the care of her teenage son (Alex), and assuming increasing responsibility for Michael’s affairs.  She and Michael have known each other almost 7 years.  Her 13 year old son has a great relationship with Michael too.  Oh Lord, hold us all closely this night.  Help us.  Show us Your love, mercy, and grace.  Guide us with wisdom.  If it is Your will, heal my brother from the effects of this devastating stroke.  Comfort him as he realizes all that has happened to him and show him hope, be real for him on his bed of sickness.  He has reached out to you in his time of need.  I am grateful for this and grateful that you are here with us.  And thank you for the encouragement we find in Your Word:

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)

In Jesus’ name I pray.  Amen.

Michael George Lech
Michael George Lech