Numb but Hopeful

I love Patrick Klein’s words from the Vision Beyond Borders newsletter this week:

Psalm 143:10-12 says, “Teach me to do your will, for you are my God; may your good Spirit lead me on level ground. For your name’s sake, O Lord, preserve my life; in your righteousness, bring me out of trouble. In your unfailing love, silence my enemies; destroy all my foes, for I am your servant.” Doing God’s will does not come naturally; our natural tendency is to satisfy our fleshly and worldly desires. We must be taught and transformed by God to do His will. When His Spirit leads us, it is on level ground. He alone can make crooked paths straight. Our duty is to remember that what we do is for His name’s sake. It is not about us. He alone can best determine how He desires for us to bring glory to His name. It is not for us to determine. Despite hardships, trials or persecution that may be allowed in our lives, God can preserve us and bring us out of our trouble. 

Our only responsibility in all of this is to simply remember our role. We are to be servants of Christ. Often we grow weary because we are trying to do His part. We are trying to figure out where He is taking us rather than allowing Him to lead us. We are trying to figure out how to preserve our lives and bring ourselves out of trouble rather than allowing Him to bring us out. We are trying to silence our enemies and destroy our foes when that is not our work. We are not made for those things, and it is exhausting. Our duty is simply to look to God and serve Him, allowing Him to do these things for His servants! We don’t have to strive, we simply have to come to Him. His yoke is easy and His burden is light; we will find rest for our souls. May we faithfully seek Him, serve Him and remain completely in Him, trusting Him to show us each step! 

Thank you Patrick.  Last night I started using yet another binding agent (Zeolite) to try to encapsulate and detox mercury from my weakened frame.  Afterwards I felt very weird!  We were Skyping with my husband’s daughter in Thailand and it was all I could do to chat a bit, smile a bit, and keep my shoulders from hiking up to my ears!  The nightly seizure attack episode was significantly shorter and I fell asleep at a more reasonable time, around 1:30 a.m.  Hell was waiting for me this morning and returned with more violence a couple of hours later.  Can you say “mad as a hatter?”  Well if you were a hatmaker in the 19th century you might be more familiar with mercury poisoning than the current medical profession.   So let’s see if we can figure this one out, eh?

#1  Trust in the Lord and lean not on our own understanding.  (Proverbs 3:5-6)

#2  Follow the clues and think about how chelation works for mercury and heavy metals.  Most protocols require regular treatments for a given interval of time, sometimes as often as every 4 hours.  (See the Cutler protocol.)  The rebound occurred about 12 hours after the first dose of a true chelating agent.

#3  Consider a repeat, low level dose at regular intervals to bind and remove the newly circulating toxins.

#4  Relief came within minutes when the detox agent was consumed with lots of water.

And after resting, eating, sitting out in the lovely Fall sunshine, I am upright.  This is good.  I am also extraordinarily humbled by some incredible blessings this week and will end with four to match the points enumerated above:

#1  Unfailing love in the eyes of my intended beloved, Steve.  When I am in his arms no matter what the circumstances, I feel the love, care, and compassion of my Heavenly Husband too.  Thank you Jesus for Steve.  Please love and bless Him.  Cover our marriage with your grace.  May others see a good work in all of this for your glory Lord.

#2  Treatment options that provide some relief.  I believe that the pattern of suffering is about to change for the better and we are exceedingly grateful.

#3  Wisdom that ultimately comes from the Lord.  I have learned so much these past 3 years and have received blessings, gained new skills, met new people, cleared out some excess baggage, and found a voice that I pray will glorify you here.

#4  Hope.  No matter what the burden may be (and we both need not look far to see horrific burdens that our brothers and sisters in Christ must bear for their belief in Him), He will prevail.  As a new friend, Karan Gleddie, brought to light this week we are to “set (our) minds on things above, not on earthly things.”  (Col. 3:2)  Therein we too will find our hope, our peace, our happiness.  And as Patrick reminded me, we are to serve with the strength of Christ for His namesake.  With our eyes on Christ all things are possible.

Gentle Reader, how may I pray for you today?

Colossians 3:2
Colossians 3:2

 

The Sequel: Same story different day

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

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