Six Deer and a Skunk

We were heading south along a remote section of a newly created road when six deer, one by one, carefully stepped across the road in front of my truck.  My husband was driving and proclaimed that he was glad that he saw them just in time to slow down!  My proclamation was the awe of the gentle animals crossing our path on a night when the witness of God’s creation in the dark was the last thing from my mind . . .

Yes, we were on the way to the Emergency Room again.  After the third night in a row where convulsive episodes escalated with the setting of the sun coupled with unusual right, lower abdominal pain, we decided that our threshold had been reached.  The decision to drive off to the ER is never and easy one.  Am I really that bad?  If I am not dying should I just wait and see a little longer?  Now that our sixth trip in four years has come and gone we both agree that having an evaluation in the middle of the night is no worse than the alternative.  This trip was unusually unpleasant, however.

We waited almost 2 hours before being escorted back to exam room 22.  During that time we witnessed the collapse of a young woman in a wheelchair whose urine bag tube dangled over the edge of the leg rest and two family members looked on with worry.  We prayed for them.  Moments later one of the several children in the expansive waiting area spontaneously vomited all over her mother and the floor (about 15 feet away from us).  The mother and a nurse-type staff person whipped into action including spraying everything with a sure-to-be-aromatic cleaner.  In my heart I prayed and in the moment we moved to another section of the ER as I donned my mask so as to avoid the fumes and vomitus aerosols from further exacerbating the convulsive episodes.  In the distant section in which we landed was a double-wide chair that made a makeshift bed for my own weakened frame.  We later discovered that by the end of our tenure at the hospital there would be EIGHTEEN car accident victims that would filter through the emergency department that night.  Lord have mercy!

My own challenge was significant yet still I was filled with gratitude that it was not as bad as those around me.  Much later and somewhere after the halfway mark of the IV infusion of sodium chloride, the convulsive episodes subsided.  Yeah God!  Then came the abdominal CT scan and pelvic ultrasounds.  Each were laden with their own versions of torture just for me.  I guess I’m just “sensitive,” right?  (If I hear that phrase one more time I’m going to scream!)  No matter, the noxious symptoms accompanying these tests mixed with tears and additional pain were bonuses upon which I had not planned that night.  For example, I had planned ahead and brought my warmest fleece jacket for covering up in between procedures.  It just wasn’t enough to counter the cold life-size tongue depressor gurney of the refrigerated CT scanner!  Another episode added to the collection.  And for me, pelvic ultrasounds are very painful.  I was there for abdominal pain, right?  Oh yeah.  “Just breathe deeply honey.  You’re doing great . . . ”

Sometime later the nurse assigned to me returned.  She had already navigated through the comfort and pain medication options that I could tolerate then brought the latter in the wrong form for a person whose stomach was empty.  I declined.  Pain management Plan B never arrived.  Later I was sobbing after the ultrasound (US).  The US technician activated my call light requiring me to ask for my own pain medication to which a nursing assistant responded.  Someone beyond the closed glass doors and pulled curtain decided that a relaxant for the gut would be a good choice for me.  Perhaps that was indicated?  But the nurse appeared with an 8-inch long syringe including a 4-inch needle that was bigger than those I had become acquainted in my lifetime!  I thought surely she would administer it into the IV line.  Nope.  She started to pull up the sleeve of my hospital gown.  With horror I wondered how so many cc’s of fluid from that big of a needle would ever penetrate my deconditioned arms.  “It has to be given intramuscularly,” she instructed.  “How about my hip?” I replied.  And as I turned to reveal the warmth of my skin buried beneath 2 blankets and a flimsy gown I began to freak out.

“No.”  “I don’t think the pain is bad enough to endure the pain of an injection like this,” was all I could blurt out.  She said “fine” and some trained nursing replies as she discarded the second drug that I wondered if or not would be added to our massive bill that night.  She left the room.  And then I began to cry and cry and cry.  I just couldn’t take the whole ordeal anymore.  I wept some more.

Within the hour we were making our way to the all-night cafeteria in that large Regional Medical Center.  My beloved, Steve, and I scarfed down more food than we had in a long time!  French fries are a great comfort food at 2:30 in the morning!  The salads were reasonable too.  At last my brain and personhood began to revive.

Steve drove us home into the dark and near-drizzly night.  Perhaps he was a bit cautious as we went, knowing the numerous auto accident victims that were our unseen neighbors in their own suites at the hospital.  “How bad were they injured?”  I wondered.  Oh my Lord, please comfort them too.  My mind drifted to the half-dozen deer that welcomed us before the bright red lights of the “EMERGENCY” entrance had illuminated our path 4 1/2 hours earlier.  I felt so much peace when I had seen them.  It was like the Lord was showing me that things were going to be alright.  Then again, their crossing was followed by the stench of a skunk!  What on earth could that mean?  Who knows?

Maybe the deer were “skunked” before they crossed the road.  Hunting season has begun dontcha know?  Maybe Steve and I we were somehow skunked too.  We made our best decision and ventured out to the hospital instead of what most couples do on a Saturday night.  And through it all, my beloved Steve was a champ the entire time.  He always is, dontcha know?

Some of you know that in about a month the number of years that I have been sick will exceed the number of years that I have been well during my marriage to Steve.  When presented with this observation Steve never flinches and repeats his vow of promise to love me forever on either side of the road of life.  Sigh.

headstone, marriage vows, til death do us part, cemetary, his and hers, cemetary plots, funeral, graveside service, Christian marriage
Til death do us part . . .

Oh my Stevers.  YOU my love are such a precious dear!  JJ

From the Do It Sick Chef: Let’s make something that resembles lunch!

The first video of my Do It Sick Chef series is now available on Vimeo!

In “Let’s make something that resembles lunch,” I literally get out of bed to make real food in a real kitchen that includes:  a veggie-n-meat entrée, ghee butter, and roasted turnips.  Roasted turnips?  Yes, you got that right!  Special diets require new and sometimes unusual food choices.  Just Julie will show you not only how to make these dishes but how to prepare the food saving money, time and energy.

Future videos that are already in the works will cover the topics of freezing foods for easier meal planning, a stand-alone segment on ghee butter, kitchen organization to save energy, and more.  You are invited to “Like” my Hope Beyond Facebook page to keep up with future videos and share your meal planning, preparation, sanity tips too.

Take care, Gentle Reader.  Lord willing, those of us battling serious illness are going to get well!  JJ

No Day But Today

A long time ago I made a decision to use the word “love” a little more freely.  That decision came with another which was to not let concerns of what others would think of that get in the way of expressing that love.  For example, if it was a female friend then she would get that the “love” was within the context of loving a fellow believer in Jesus Christ, love like a sister that I never had, and possibly a bond that simply comes with walking through many years of life’s ups and downs together.  The transition would be instant, from “Take Care” at the end of an email to “Love, Julie” if we had just endured a crisis together.  When one heart is hurting, there is no other word that will suffice.  Love covers things well.

Born again believers know the author of love as God himself.  The scriptures instruct us that:

19 We love because he first loved us. 20 Whoever claims to love God yet hates a brother or sister is a liar. For whoever does not love their brother and sister, whom they have seen, cannot love God, whom they have not seen. 21 And he has given us this command: Anyone who loves God must also love their brother and sister.  1 John 4

The Lord is the perfect reflection and expression of what love looks like.  I do believe that those who are not in Christ have a sense of what love is like too.  That is why I feel comfortable including a video in which 1) two women are kissing and 2) there is a man dressed as a woman embracing another man.  If the relationships were real, they must have a sense of connectedness to express their love outwardly.  I am not condoning homosexuality.  I just might understand it a little more since my late Uncle Fred lived and died within the context of “the gay lifestyle.”  I still loved him despite this decision.  Oh how I wish he and others knew the deeper spiritual connectedness that comes in a God-fearing and God-honoring relationship!  The Lord blesses those Who love him first!  (Hebrews 11:5-7)  But that is not my focus here today.

My focus is the importance of expressing love everyday to those you care about.  It’s not weird!  I am reminded of this today in the middle of 8 days in which my husband and I will attend two funerals.  I had only met his Uncle Don one time and was more “acquainted” with Dave than knowing he and his wife Jane more “personally.”  It didn’t and does not matter.  As fellow believers in Christ, their character and lives had impacted my life with that level of connection.  Uncle Don warmly accepted my marriage to Steve that had come at a time when most of Steve’s children still could not.  Since I knew without a doubt that the Lord was blessing our marriage, it was refreshing to feel loved by his family.  I thank the Lord for this.

Also when Steve and I married and started to attend his church home, he pointed out couples with strong marriages that he wanted to model our relationship after.  Dave and Jane was one of them.  They had been married for decades by then yet still had a sense of fun, a spark, and a deep love for one another that was palpable.  They worked separate jobs outside of their home yet were usually together at church and other important events.  Dave served the body of believers, his community, his employer, and his family with equal enthusiasm.  Thank you for pointing out this great example of a Godly man, Steve.  And yes, you are much like him for sure!

Today I am unable to attend Dave’s funeral service due to complications of a serious, ongoing illness.  Last night was particularly wretched.  I had a sense that it would be risky to go to the funeral home and be around so many people and potential exposures that trigger convulsive episodes.  I went anyways. I am also in the middle of re-shuffling my treatment plan and have no idea what made things so much worse.  The only good part about that hellish 2 hours was the toning of my abdominal muscles from flexion posturing, writhing, seizing, moaning, and more.  Oy vey.  In the middle of it I asked for the Lord to remove this hell.  I begged for His mercy.  It must have come since at some point I passed out and woke up about 7 hours later . . .

Today I am beat up from all that has transpired in the past day.  Somehow I am still alive!  Though my heart is heavy with grief on many fronts, I do not regret pouring out the strength that I had to be with friends in their time of need.  I got to be out with my beloved husband and do one of the important things of this life.  Going to the wake reminded me of the truth told a gazillion times before:  there is no day like today.  There is nothing like love between two people, magnified and blessed when they are one in Christ.  And lest it be forgotten or unknown, it is important to express that love out loud and often.  For me this includes the love of my Lord and Savior, Jesus Christ.  For just as it says in the song,

I die without You!

Talk about perfect love! Oh Gentle Reader, won’t you join me in sharing a little love today? 

With love, JJ

Known in the Gates: Part 2, The Inside Story

One of the movies that has really resonated deeply with me is, The Breakfast Club.  Please see my previous post for the catchy theme song that underscored the film and one of the most poignant scenes that is also pertinent to Part 2 of this 3-part blog.

In Part 1, I described the isolation that I have felt when enduring a serious illness and how the Lord still gets me through the toughest of days.  His Word is my greatest comfort; the leading of the Holy Spirit and His presence are my greatest companions.  I ended with a question,

But how well does he really know me?

Sure, my Lord crafted me before I was born and set forth all that I would be, all that I would endure and accomplish.  His Words in Psalm 139 declare that He knows my “innermost being.” Does this include the longing of my heart as well?  If it does, why has He allowed me to become so dreadfully isolated?

Maybe someday I will get to see why so many family and friends have chosen to “walk on by” me as it says in the theme song of The Breakfast Club.  Have I not been a good friend?  Maybe I was not.  I remember about two years into this ordeal someone contacted me and asked me about getting together for coffee.  I replied “yes” and then I never heard from her again.  My spirits had soared then crashed and burned.  For believers in Jesus Christ, the answer to the “why” question is usually left for eternity.  We simply may never know “why” this side of heaven.

Those of you not living in isolation may not have any idea how much Satan uses this experience to tear a person down.  He can prey upon all of our negative emotions and be allowed to create havoc in our lives.  (Yes, ultimately God is still in charge!)  Yet I know that it’s really not about resisting Satan or about losing the people in my life.  I resist the devil and his demons with the sword of the spirit:  the Word of God as described in Ephesians 6:10-17.  People come and go in our lives and that is the normal ebb and flow of life.  It really is about my response to the taunting, the loss of these relationships.

My challenge has been particularly great due to the effect that this chronic illness has had on my brain.  Responding to Satan’s lies and the loss of relationships has been affected by the change in brain chemistry that came with chronic illness.  My ability claim victory in the name of Jesus Christ and fully embody the companionship of my Lord have been affected.  Satan’s lies have been magnified.  My social skills have eroded.  My ability to think clearly has been altered.  And I struggled to override these skill deficits but could not, even if I tried.  Allow me to explain.

Only recently did we discover that excessive neurotransmitters called catecholamines (epinephrine, norephinephrine, and dopamine) are likely contributing to my mood changes, thinking and communication skills in addition to possibly causing the convulsive episodes.  This is happening due to the expression or “turning on” of polymorphisms (SNPs) or breaks in several enzymes that help form my DNA code.  The DNA code is the instruction manual or blueprint from which the body functions.  Everyone has a unique combination of broken SNPs that get turned on by illness or significant stressors in the environment (such as exposure to mold).  For me the factors included everything that I have written about in this blog:  biotoxin illness/hepatitis, latent Lyme disease, Candida toxicity, mold illness, infected root-canaled teeth, and mercury toxicity.  That’s a lot of stressors!  These illness and environmental challenges became a trigger for disaster.  I even have the data to prove it, all of it!

methylation cycle, Dr. Amy Yasko, SNPs, Lyme disease, mold illness, mitochondrial, mito disease, methylation, B6 deficiency, CIRS, mold illness,
One version of a methylation cycle from http://ihateticks.me/2014/10/06/methylation-for-dummies/

For some people this process manifests as a Mitochondrial Disease or a disruption in the methylation cycle inside the nucleus of the cells of our bodies.  My thought life was affected.  My mood was affected too.  I had waking and nightly nightmares not based in any reality past or present.  Those were internal things that my beloved husband, Steve, and the healthcare community could not see very often.  Several healthcare practitioners labeled me as having a mental illness of sorts, often without even completing a mental status exam or workup!  Gratefully, Steve believed me.  They all saw the wretched convulsive episodes that have plagued me for hours every day for 3 1/2 years.  And Satan was allowed to enter into the whole dynamic with lies and attacks that I will definitely write about at another time.  Absolute mental and physical wretchedness.

But now the gig is up!  Two days ago I woke up from a lovely nap after starting to treat this condition.  I had my first 16 hours seizure-free!  It’s as if someone turned on the lights in my brain!  Not only do I have a formula for correcting the brain-part of the process but the prayers of deliverance against the spiritual warfare are taking hold.  The cascade of negative mental, physical, social, emotional, and spiritual suffering is beginning to turn around. Lord willing, I am going to get well!

My Jesus knows all about every aspect of what I have described here.  He also knows the desires of my heart.  How do I know this?  My prayers long before this illness began was to become whole.  I had been broken by the consequences of a hard life:  events out of my control.  Many times during trauma the Holy Spirit would bring encouraging scripture to me that kept me moving forward.  Yeah, finding hope and finding myself has come through horrible, ongoing isolation and trauma.  I have worked hard to recover from so much suffering in my heart, my mind, my body.  Each step of the way has been both painful and meaningful.  Yet I tell you, Gentle Reader that nothing has been wasted!  I have learned to trust the process in EVERY CIRCUMSTANCE under the protection of my Lord and Savior, Jesus Christ.  And now the desires of my heart are being realized.  Cool beans.

So how does one rebirth the desires of one’s heart?

Jer 29.11b

To be continued in Part 3 . . .

Known in the Gates: Part 1, Not Forgotten

For those of us around when the iconic movie of the 1985, The Breakfast Club, came out, we probably asked ourselves which character we liked the best.  Was it the one called Sporto, the jock?  Carl, the criminal?  Brian, the brain?  Molly Ringwald’s character, the princess?  Or maybe it was the outcast gal in black?  (what was her name?)  Here’s a little refresher with the song that still gets my heart rate going, my feet tapping!  How about you?

This is one of those songs that once you hear it, you won’t be able to get it out of your head for about a day!  Sorry.  I really like this song!  I really liked the movie too.  The character that resonates with me these days is Allison Reynolds played by Ally Sheedy.  If you don’t want to watch all of the clip below, kindly forward to the scene in progress around the 5:00 to 6:15-minute mark.  It’s where she confesses her deepest sorrow:

Yes, I get this type of sorrow.  Try being sick with a serious illness for coming up on 4 years and see who remembers your name?  See who identifies with your struggles?  See who bothers to ask, who bothers to call?  The numbers have dwindled for me for sure.  I have kept in touch with my closest friends from Illinois and made new friends in the recovery-from-this-or-that communities online.  My beloved husband (whom I met then married here in Indiana), Steve, has hung in there through with me the worst of the torment, the lifestyle changes, the failed treatments, and the thousand-plus nights with disrupted sleep.  (Watch these videos if you want to know what I am talking about.)  Some folks I know have graciously followed this blog through it all.  Thank you!  I am always delighted when I hear from one or two of them now and then.  Nice.  Well sort of.  It’s just not the same . . .

There is a place where I am known very well and keep in close contact.  There is a place where I have not been abandoned, ignored, discounted.  The place where I matter most and my closest companion is always there, always here with me.  That place is in the arms of my Heavenly Father through my personal relationship with his Son, Jesus Christ.  He never forgets about me!  I savor His words He speaks of me (and you too, Gentle Reader) from Psalm 139:

For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
17 How precious to me are your thoughts, God!
    How vast is the sum of them!
18 Were I to count them,
    they would outnumber the grains of sand—
    when I awake, I am still with you.

Oh how I wish I knew these words as a young woman when I first saw The Breakfast Club!  What matters now is that I get to lean on these words all of the time now in the quiet, dark places I have visited when alone with my Lord.  He has never forgotten about me.  I have always felt His presence even in my greatest hours of suffering.  He has spoken through the Holy Spirit often.  I have never felt “lonely.”  The Creator of the universe loves me!  I am so grateful.

But how well does he really know me?

To be continued in Part 2 . . .