The Burger on the Bathroom Floor

Sometimes there’s a bride carried in the front door at the same time there’s another bride carried out the back door . . .

Hi there.  My name is Julie and I have a wacky life.  Not that my life has ever been boring, mind you.  Lots of difficult things have kept me on my toes (or on my knees before the Lord) for a good portion of my days on this earth.  I used to say it was like cooking with all of the burners on the stove cranked up to the highest setting.  Then there was this network marketing book entitled, Mach 1 with your hair on fire that described things pretty well for me too.  Helen Keller wrote in her book The Open Door, “Life is either a daring adventure or nothing at all.”  O.K.  You get the picture.  There is no rest for the weary so get over it, get on with it, and better get right with Jesus to see you through!

So what’s up with the burger on the bathroom floor, you ask?  Balancing my blood sugar is a key part of managing this crazy biotoxin illness that came on the heels of Lyme disease that came in through the backdoor of fibromyalgia many years ago.  Actually hypoglycemia came first followed by hypothyroidism, fibro, yada, yada, yada.  This all requires me to carry a protein snack and water with me virtually everywhere I go.  Popcorn doesn’t cut it very long.  I cheat sometimes with fatty veggie chips when grocery shopping only to follow-up with a chunk of lunchmeat from one of those ziplock bags from the deli counter usually at a stoplight when driving home.  Whatever.  Who needs a knife and fork anyways?

Dressed up for the wedding of my husband’s son yesterday and our friends’ son today, I opted for the bigger black leather purse (to match my shoes of course and the only other purse I own).  I could stash a butternut squash coconut muffin, some coconut cream, and a burger-lettuce roll-up secured in a Ziploc baggie in there and look like all of the rest of the women with maybe a little extra, er, baggage, if you know what I mean.  Who would know that I could survive an invasion of body snatchers for at least a day with no more than a twinge of hunger when it was all over?  I would be ready.  Unfortunately I did not plan on a wardrobe malfunction (a term coined in the USA after an egregious moment by Janet Jackson during the Super Bowl Half Time Show a few years ago.  I won’t go into it here).  Or rather a leather purse malfunction.  I barely made it through my own snafu with my dignity!

The D.J.s were cranking up the music at the Light Guard Armory to add some ambiance to the large plain, cinder-block walled room with metal doors pained beige to match and linoleum flooring that had been waxed for more years than I have seen the light of day.  The host families had done their best to decorate the place with table adornments inspired by nature and set up a simple, yet respectable snack table for later munching.  I knew I probably wouldn’t be able to eat any of it (can you say M&Ms and Reeses Pieces for dessert?) so I settled into the scene comfortable with the stash in my purse.  Surely the burger was o.k. unrefrigerated for a couple of hours.  The only problem was that I was getting very hungry!

What’s a gal to do waiting with all of the other guests for the wedding party to arrive, dressed up in her Sunday best with low blood sugar looming and a burger in her purse?  Well I learned a long time ago that if you need a moment of solace you can always escape to the bathroom.  No one usually questions your actions in there!  It’s a little different story, however, if you are a gal since gals tend to chat while tinkling, primping, washing their hands, and adjusting their bra straps not necessarily in that order! How do you fit in whipping out a burger in your purse?  Answer:  you don’t.

The next level of defense is to squirrel away in a bathroom stall, quietly unwrap the nourishment of choice, and snatch a few bites while crouched between the open areas on either side of the door.  If someone “accidentally” sees you wiping your fanny through the crack by the hinge it’s o.k. but eating in there?  EWWWWWW!  No way!  But who really cares anyways if you haven’t used the toilet just moments before and the place is clean.  I mean my hands were clean.  Oh yes, and one must make sure that no one else has camped there in the past hour either, if you know what I mean!  Once you have your sequencing down, you can hide your medical self care in this way if you so choose just like a diabetic might do the same when administering insulin in a public place.  Sometimes it’s just better to take care of it in the one private place to which you can always retreat.

I did not count on what happened next.  I was one large bite from finishing my life-giving, 1/2 burger wrapped in Romaine lettuce with a wedge of coconut spread when the burger went tumbling onto the floor.  Oh my goodness!  Not my precious sustenance!  Suddenly I became acutely aware of how really wrong it is to bring food into a bathroom.  Then trying to eat it there even in secret no longer seemed like a good idea.  Years of preserving my sense of social graces came to a screeeeeeching halt!  There’s a burger rolling on the bathroom floor and it came from my direction! 

Of course I did not count on what happened next either.  Just then I heard what seemed like a gaggle of women entering the restroom.  Holy crap!  (Pun might be intended here.)  In a flash I made a dash to pick up the chunk o’ meat, rinse it off in the sink, hide it in my hand, murmur something like, “excuse me my stuff is in there,” and retreat back into the stall with whatever style and grace I could preserve in my moment of horror.  How could I ever have explained a burger rolling on the floor?  Never mind.  Nothing came to mind.  I stuffed the once delectable beef/bison griller into the open piece of Saran wrap in my purse and zipped it closed.  Snack time was over.  I would have to survive on the bites consumed thus far.  I thought I would be o.k. with that so I walked “looking normal” out of the stall to wash my hands then leave.  The two unsuspecting witnesses left with their curious glances, having never stopped their conversation during their porcelain activities.  Cool beans.  I was now in the clear and free to leave as well.

Sigh.  Some things in life are strange at times.  You just gotta do what you gotta do and laugh about it if you possibly can.  Gentle Reader:  the next time you grab a burger off the grill try not to think of me munching somewhere in a bathroom stall, k?  It just might change your appetite a bit.  If you do try adding some more spicy mustard and you will be fine.  I promise.  JJ

burger-cartoon-vector-graphic_1334753008057

 

When you find your voice again

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.

 

And then you just hope to move sideways

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

 

 

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