It’s more than a delicate balance

As anyone who likes to (or needs to) cook knows, it can be a tough balance to make a recipe taste just right.  The host of your fav cable cooking show says to add a pinch of salt and pepper as you watch her grab easily a fistful of seasonings.  Ah ha!  So that is why version mine comes out differently than yours!  Just ditch the online recipe on her website and fly by the seat of your pants!  Taste, taste, taste and make the dish all your own, eh?

I don’t tend to make meals using recipes anyways.  With a limited diet and having to make a wacky version for me and a “normal” one for my beloved, I would become too frustrated trying to follow the masterpiece designed by someone else’s reality!  I just start with what I CAN eat, add more salt with my eyes closed then put one of my go-to seasoning mixes on Steve’s version.  It works for us.  Well most of the time, that is!  And when it doesn’t, that is what salsa is for right?  (O.k.  I know I have offended someone out there now!)

My health situation of late is kinda like the same delicate balance.  Add too much zinc for too many days in a row or take a new supplement or med for more than 3 doses and whammo (!) I get burned at the “steak.”  There’s little more than dog food left of me afterwards.  Gratefully my Doc does exhaustive lab testing to try to coach me in the right direction.  But now even labs cannot predict the outcome anymore.  I seem to react to everything.  It’s worse when the pharmacist of an independent lab starts making suggestions too.  So I try this and that.  Oh how I want things to work out well!  So far, it has not.

I am my own worst enemy in these scenarios.  The results aren’t even back yet for the female hormones that are at a mystery level since going through menopause.  I went through menopause during the almost 4 years of this illness and these tests for me are way out of date.  The significance of the hormones is that a goodly number of women (who have true epilepsy) have worsened seizures during menopause and others have reported a new onset of what is called “catamenial epilepsy.”  While I do not think that I have epilepsy per se and all the fancy labs have supported this, I do find this course of study intriguing.  I joined a couple of Facebook groups on the subject and have hunkered down into some new online research.  Then of course I re-started a tiny bit of progesterone on my own to see what would happen.  Yeah, I know that I should wait until the lab results are back in a total of 6 weeks.  But heck, at the rate I have been going, 6 weeks means up to 210 more hours of convulsive episodes!  Why wait?  I am going to go through hell anyways . . . .

Dr. Erwin Leutzer of Moody Bible Institute teaches that, “when you are going through hell . . . DON’T STOP!!!”  Oh yeah.  That fits for me.  Not sure what to do with some of the symptoms that are emerging though.  Clearly this will need professional tweaking at some point!  Do ya blame me for trying?  What if I finally stumble upon the resolution to this nightmare?  There are so many labs that are off now and the convulsive episodes have escalated to 4 hours or more most days, I just figured that it’s worth a shot . . . worth disrupting the status quo.

The decisions of life can be a delicate balance over here sometimes.  Do we continue with travel plans when I am in the throes of chronic illness?  For us, the answer is yes.  We just adapt things a bit and get on down the road.  Life goes on.  In due time, if it is the Lord’s will, I am going to be well.  In the meantime we will use the portable heater in the Tin Can Ranch (aka travel trailer) instead of the noxious propane mini-furnace so I can be with my beloved overnight at his kayaking competitions out of town.  In the meantime I’ll freeze portions of meals to ease food prep when Steve needs to pitch in for me.  In the meantime I will fold laundry when my brain stabilizes in the wee hours of the morning and scratch the ears of our pup who gets more fractionated sleep than I do.  In the meantime Steve will head into work later to make up lost time and we will be grateful for his flexible employment.  And so it goes, a balancing act on steroids that we have come to master, one ingredient at a time!

Gentle Reader, I’ll bet you understand the need for balance with the stuff of life. Let’s look together with gratitude that we do have some choices even in the worst of situations.  For those who believe in the Lord, Jesus Christ, we know that all things, delicate and less so, will work together for those who love the Lord and are called according to His purpose.  It’s His promise from His word in Romans 8:28.  That is because He knows us and loved us before we were even born.  He knows and cares for all of the details of our lives!  (Psalm 139)  And He knows what choices we will make.  As for me, I will aim to make choices that keep me moving forward, aiming to win.  Sometimes things will be out of balance for a time.  Yet with my eyes fixed on Christ, leaning on His Word and the leading of the Holy Spirit I will run my race of life with endurance:  endurance the produces hope (Romans 5:4) and endurance to finish well too!  (Hebrews 12:1)

surf ski, surf ski racing, river racing, USCA, kayak racing, unlimited class, competition, drafting, Epic kayaks
My River Bear leading in a United States Canoe Association event last year. Gooooo Steeeeve!

Never sacrifice sweet victory for a need to stay comfortably in balance though.  Attend to the tasks at hand with wisdom then get out there and LIVE!  Do not stop!  May we both finish well my fellow sojourner.  The crown of glory awaits!

That is all.  JJ

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

Into the Night

I am finally awake, stable, and coherent all at the same time!  It is now 12:48 a.m.  Such is life.

First snow dec 2009 007

On a good note, I was able to march around outside this evening in my snowshoes for about 30 minutes this evening.  The night air felt bitterly cold yet the sky was clear with all of the stars visible in our Midwestern corner of the world.  I love seeing our German Shepherd, Elle, jump from one snow drift to the other as she chases after my husband and me.  But perhaps my most favorite moment was seeing her waiting for me as she looked into the house from outside on our covered porch.  Steve had taken off cross country skiing in the backyard and pond area.  She usually follows him closely, often pouncing behind him in his tracks when the snow is deep.  Today she knew that I would be headed out with him shortly after he left and there she was:  waiting with her big expectant brown eyes.  Ah the love of one’s pup!

First snow dec 2009 010

Sometimes when I am alone it is hard to feel the love that I know exists in my life.  When I am the sickest each morning this is especially true.  For me it seems that so much of the success of recovering from this time of illness will lie in what I do with the grief of the trauma I have experienced.  For over two years now, I have felt traumatized by the wretched seizure attack episodes that wrench my body with pain, headaches, cognitive changes, ringing in my ears, crying, spontaneous vocalizations, and violent seizing.  For over two months, the episodes last around four hours total per day with the worst ones occurring in the evening.  The sadness can be overwhelming; the disappointment each time they return can be heavily discouraging.  Both can lead to a sense of emptiness that is devoid of love, hope, and meaning.  At some point I recover enough from an attack to get something to eat or drink.  Even eye contact with the lone pet left behind with me when everyone else in my life has gone off to work or some other noble activity can be a mixed blessing:  comforting and protective (yes) yet a pittance for more meaningful human contact.  By the way, where is God?

Yes, I often long for Jesus with skin on at these times.  I am grateful that most recently I have found Him in the caring voice of a friend on the phone and always in the loving embrace of my beloved Steve.  Sometimes I miss picking up the phone and calling my mom.  This desire to connect with her seems stronger the more the years go by since she passed away nearly seven years ago.  I guess it is normal when a person goes through a time of testing or sorrow to desire the comfort and wisdom of a parent no matter what your current age might be.  If my mom were still alive today I think she would want me to keep moving, keep going, keep trying despite the setbacks.  O.K. mom:  will do.  For tonight I’m going to call on the One who sees me whether or not my husband is around, the dog is awake, a friend is home to answer the phone, or my self-soothing words in my heart to my deceased mother means anything.  I’m going to the throne of grace.

My dear friend mentioned Psalm 91 yesterday.  Here are some gems from the Psalm to which those with an anxious heart often turn:

Psalm 91

Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty.I will say of the Lord, “He is my refuge and my fortress,     my God, in whom I trust.”

**************

14 “Because he loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”

From Bibleclassics.com I found this little gem of insight into Psalm 91 that spoke to my heart this night:  “Whatever happens, nothing shall hurt the believer; though trouble and affliction  befal, it shall come, not for his hurt, but for good, though for the present it  be not joyous but grievous. Those who rightly know God, will set their love upon  him. They by prayer constantly call upon him. His promise is, that he will in  due time deliver the believer out of trouble, and in the mean time be with him  in trouble. The Lord will manage all his worldly concerns, and preserve his life  on earth, so long as it shall be good for him. For encouragement in this he  looks unto Jesus.”

Yes, thank you Matthew Henry.  I will hold onto the psalmist’s words of comfort inspired by my Lord who sees me on my bed of sickness, who promises He will never leave me or forsake me.  And if it be His will, He will deliver me from my suffering.  Into this night and for the rest of my nights I will ultimately rest in the loving arms of the one who is showing me His goodness despite the darkness.  No matter what the next day might bring I will trust You.  No matter what the next hour may bring I will wait on You. 

No matter what you too may endure Gentle Reader, I hope that you will be encouraged that your sadness or disappointment does not go unnoticed by the Lord who loves you too.  He is worthy of our faith.  And I know if we both but believe in Him, we will be blessed in some special way that will transcend our nights, our days.  In the meantime He will not frustrate us beyond our ability to cope and will provide a way out when overwrought with temptation.  These are promises in His Word and truths by which we can endure all things.  We will never be alone.  His eyes will always be smiling towards us through the looking glass of life.  JJ

Taming the Savage Beast

“Don’t cry.  Don’t raise your eye.  It’s only teenage wasteland,” sung by Roger Daltry and Pete Townsend of The Who in Baba O’Riley, 1971.  (Decca Label)

The first rock concert I ever attended was “The Who” at the Pontiac Silverdome in Michigan.  The venue doesn’t exist anymore and neither does the band!  I will never forget the experience of seeing so many drunk, stoned, and wasted young people in one place before:  the place probably held 80,000 of them that night!

I got to go to the concert for free as a member of the Warren Jayteens.  The Warren Jaycees had a hot dog booth at the newly constructed Silverdome and we earned money for both of our community service organizations by working in their booth during Detroit Lions football games.  The Who concert was to be the first rock concert scheduled at the Silverdome.  When our Advisors in the Jaycees asked us if we wanted to work at the concert of course we said YES!!!  Gratefully we ran out of our supply of hot dogs that we sold as Hawkers in the stands just as the concert was about to begin.  We walked along the first level searching for the best view of the stage from the back of the seating area.  It didn’t matter that we did not have seats.  We were there!

I was there for the music.  It appeared that virtually everyone else was there to get “wasted!”  Sure is funny how my use of the term “wasted” has changed over the few decades since then.  Flash forward and it appears that my hope these days is that my life and what happens to me will NOT be wasted!  Time and experience are precious gifts to me:  a blessing from the Lord to spend reveling in His glory, His plan for my time on this earth.  We can’t take back either one after they are spent nor can we do them over again.  So I want to be fully present in the gift of, well, the present and rest in its purpose or meaning.

Therein the challenge lies.  How does one make sense of the savage beast that has become a part of my daily life?  Shall I accept this thorn in my flesh or fight for the cure with every resource available to me?  Do I drag my beloved husband through the details and horrors of every experience or escape alone:  just my Heavenly Husband and me?  These are the questions with which I grapple these days.  And more often than not, my quest for meaningfulness falls short in a pile of wasted time, lying on a bed, seizing from head to toe.  Then there’s the recovery phase.  Such a raw deal at many levels.  Wasted indeed, or so it seems.

There is no taming the savage beast at this point in time.  Oh sure there are things I have learned to avoid that make the seizure attack episodes worse like consumption of simple carbohydrates, new treatments, exposure to mold and noxious sensory stimuli, and travelling away from home into unknown environments.  But to make them go away:  not a chance so far.  I haven’t had an episode-free day in many months.  Two years have gone by in this personal hell.  This past week landed a night with a total of 6 hours of seizure and convulsive episodes with a 4-hour break in the middle somewhere in which I think I either passed out or slept.  Yeah, that night was supposed to be part of a special visit with family at their newer home out of State.  By the grace of God we had a few fun moments despite all of the suffering and post-seizure noxious symptom load thereafter.  Guess you could call those minutes His redeeming grace.  The scene captured below with my adoptive grandson, Jackson Rees, is a treasure to me.  Treasures sometimes come at a price.  Price paid.  Moment not wasted.

Jackson and Julie looking out the window

And so it goes.  Treatment continues for a systemic Candida infection.  Treatment is on hold for Lyme disease and the mold-related illness called Chronic Inflammatory Response Syndrome.  In this moment in time I just hope that the food I ate an hour ago didn’t have too much starch to turn on a yeast rock and roll concert in my brain.  As I close here, I guess I’ll just look out of the window of my mind and note the wonder that lies beyond.  This too shall pass and with it will come an amazing story of the Lord’s sustaining grace through the firestorm of illness.  (Philippians 1:12)

I am so very grateful for my Lord and Savior:  Jesus Christ.  I just couldn’t make it without you!  And if it is Your will precious Lord, please end this nightmare.  I am ready to live again.

Philippians 1:21 (NIV)

21 For to me, to live is Christ and to die is gain.

******************

For more on non-epileptic seizures of biological origin, see the You Tube video in a previous blog:  Hell on Earth