CIRS – Page 4 – Jesus is for the Wounded

A Plausible Case

Published on December 6, 2015December 6, 2015 by Jesus is for the WoundedLeave a comment

As you may have read in the About Julie page of this blogsite, I treated for Chronic Lyme Disease early in the four years that I have been battling serious illness. I had not recovered my health four months after a bout with viral hepatitis and our Family Practice Physician convinced me and Steve that latent Lyme disease was keeping me sick. Then the story changed a few times . . .

Treatment for Lyme disease, Candida, mold exposure, mercury toxicity, gut parasites, and infected root-canaled teeth has still left me with the following symptoms four years later:

Hours of daily convulsive episodes, every single day
Headaches
Painful shoulders, forearms, hips, neck, jaw, and more
Ringing in my ears
Multiple severe chemical, mold, and sound/light sensitivities
Significant nutritional and hormonal deficiencies
Fatigue
Episodic cognitive and emotional setbacks
Periodic night terrors, nightmares, waking terrors
Weakness and deconditioning
Air hunger and chest compression symptoms
Neuropathies
Severely disrupted sleep/wake cycle
Food sensitivities despite a restricted diet
Gut dysbiosis
Inability to consistently perform activities of daily living or work
Social isolation
Intolerance to treatment

So in other words, my life is kinda hellish a lot of the time! Today was no exception. Then right in the middle of the trauma there were tender encounters with the sweetest man on the face of the earth: my Stevers. We talked in between seizure attack episodes, he provided care when I could not move, and we made the most of a low-key day. It was the “same story, different day” around here. And something else happened too: I may have discovered another piece of this wretched illness mystery: Latent Lyme Disease can affect the gut which in turn can contribute to neurological complications much like the ones that have eluded all of our attempts at recovery.

No, it’s not systemic Candida as I suspected when I wrote my last Treatment Update. It’s called “Bell’s Palsy of the Gut,” a term coined by Lyme Literate Medical Doctor (LLMD) Virginia T. Sherr. “Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians,” states Dr. Sherr in the April 2006 issue of Practical Gastroenterology (p. 74). There are tests that can be performed to determine the presence of Borrelia burgdorferi along with other microbial pathogens transferred in tick saliva after a bite. In two weeks I will have a diagnostic procedure in which these tests could also be performed. Whoa Lord. Is that why I felt led to add an anti-microbial to my anemic treatment plan?

God is good. All the time. God is good. Today I felt led to add back a probiotic that I actually was able to tolerate this time. The new information about Lyme disease may explain the increasing gut inflammation this past year and my supremely negative response to a trial of a far-infrared light treatment to my abdomen. Or to any abdominal exam. Or to physical therapy to the hip flexors in the lower part of the abdominal wall. Or to certain foods. At any rate, a new door has opened and there are new possibilities for getting well. Perhaps it is time to re-visit the diagnosis of Lyme disease.

Stay tuned. This exquisitely wild roller coaster ride of recovery from serious illness is about to reach a new station. In the meantime, please pass a spoon and 1/2 of a carton of Siggis plain, grass-fed, organic and Icelandic yogurt. We’re going to get this thing right or keep screaming all the way to the bottom of the next hill until we do! (I told you that I worked in an amusement park one summer didn’t I? Yeah, Cedar Point is really cool!)

Cedar Point gatekeeper_wallpaper

Known in the Gates: Part 2, The Inside Story

Published on September 19, 2015September 19, 2015 by Jesus is for the Wounded4 Comments

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?

To be continued in Part 3 . . .

Known in the Gates: Part 1, Not Forgotten

Published on September 16, 2015September 19, 2015 by Jesus is for the WoundedLeave a comment

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.
¹⁴I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
¹⁵My 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.
¹⁶Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.
¹⁷How precious to me are your thoughts, God!
    How vast is the sum of them!
¹⁸Were 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 . . .

He really cares: Part 1

Published on July 31, 2015July 31, 2015 by Jesus is for the Wounded2 Comments

The initial blog title rattling around in my brain for the last 24+ hours was, “You are THE ONE who really cares.” After all, when each of us is alone in the midst of a trial (particularly when it is medical), it is only you that bears the greatest burden of the suffering. Others offer comfort, prayer, helps of various levels, and if you are lucky will actually stick around for more than a few moments. But it is you, one and only, who must bear the pain . . . And that can be frightening to say the least!

Rather than rant about what to do with fear, give platitudes and verses with which to train your mind, and otherwise avoid ministering to the weeping heart, I will simply offer this:

Just lay your head on the lap of Jesus.

More than anyone, Jesus Christ knows what it is like to be killed, pained, abandoned, betrayed, falsely accused. He is the only one Who can be with you as the Holy Spirit, in your time of sorrow from its beginning until its end. He will never leave us or forsake us and always be there if we but call upon His name. He is worthy of our

praise

tears

anger

weakness

alms

thanksgiving. I was reminded of all of this just yesterday!

About 3:30 p.m. in the afternoon I was abandoned in a treatment room of my doctor’s office. The nurse practitioner (NP) had left the room after writing an order for me to get IV fluids and after “catching” me collapse during a short convulsive episode during the appointment. After all, that’s why I was there: to document the crisis, get the orders, and head over to the hospital for treatment thereafter. I was sitting there kind of dazed. Soon after she left the room (and after another nurse came into the room to revise the scheduling of some other appointments), I began to list to one side. There was a chair next to me with my purse and water bottle resting on it. The weakness increased and a few inches at a time, I began falling to my right side, coming closer to the purse on the chair. I could not speak. I could not brace myself. I could not do anything but be glad there was a chair next to the one upon which I was sitting so as to break my fall.

The next 20-30 minutes were very ugly. My body collapsed fully onto the chair next to me. My face smashed into the zipper of the purse while my glasses and cover-style sunglasses pressed into my face. I looked straight ahead with my head rotated completely to my left, straining my neck most uncomfortably. The front of my right ear was crushed underneath me on the purse whilst the back was free-falling unsupported; the back of my head pressed into the vinyl backrest of the metal chair. Not exactly pillow material! My right hip was twisted and pushed into the thinly padded, vinyl seat of the chair upon which I was sitting. The ringing in my ears had already increased with the headache that had been working its way into action over the past hour. Legs cramping, toe tips burning as much as my finger tips, and feet struggling to keep contact with the floor to stabilize my position . . . herein I would remain for the next 90 minutes.

I thought about many things. First, I prayed. I prayed again and again and talked to God about many things. Will they be coming soon? Do I hear them coming? Was I expected to go out to the nurse’s desk after the NP left the room or was she coming back with more instructions? I really could not remember since I was already in the brain fog of recovering from the earlier episode that she had witnessed before she left the room. Surely the staff would notice that I had not left the room yet? Or maybe not. I waited in that same treatment room (#4) TWO HOURS the last time I saw the NP before I stepped out to mention that I was in there waiting. “I didn’t know you were in there waiting for me,” she explained with her soft, sweet voice that I would learn never changes even in the midst of an emergency . . .

Time passed. It was hard to ignore the searing pain of the two pairs of glasses being pressed with my full upper body weight into the side of my nose. I could not move to get more comfortable. I still couldn’t speak. I tested this out and nothing happened. In a while when I tested it again, my arm would start shaking; if I tried my leg, my leg would start shaking. This is what I call, “neurological collapse” at it’s finest. I learned on in a Catamenial Epilepsy Facebook page that in true epilepsy (which I do not have) has a name for this phenomenon called, “Todd’s paralysis.” It can go on for up to 48 hours and mimic the signs/symptoms of a stroke. Todd’s paresis usually resolves on its own without any residual effects. I have experienced this complication at least once per week for the last 3 years. Gratefully, most of the time the residual effects for me resolve within 2 hours, at home, in the evening, and within reach of my beloved husband!

There is nothing I can do to quicken the process of recovery from an episode. It takes what it takes. Knowing this I tried to calm myself down and focus on my breathing despite my twisted posture. My rib cage was constricted so I did what I could to at least slow down each inhale, each exhale. I did what I could to keep my neck and shoulder muscles tensed a bit so as not to twist my upper torso any more extremely than it already was. I tried to relax the crushed tissues on my face so the pain would subside. This worked poorly. Suddenly the voices beyond the closed door seemed louder. Then I heard the doctor’s voice. This would be the time to try and vocalize something for help. My voice was weak. help. Help. I tried many times. Probably no one in the same room with me would have heard those first cries.

I redoubled my efforts. I took a deeper breath and vocalized a little louder, “Help!” Then I rested and made more attempts, “HELP!” Surely the door cannot be that thick! I can see a crack at the bottom between the wood of the door and the low pile carpeting. “HEEEEEEELP!!!” I cried again. My nose was running from the first time I had started to cry, dripping onto my purse. Fortunately it is made of an outdoorsy, washable fabric. Your mind thinks of all kinds of things when you are trapped.

To be continued in Part 2

Obedience

Published on July 28, 2015July 29, 2015 by Jesus is for the WoundedLeave a comment

Obedience is one of those words like “discipline.” Not popular either one of them, yet both separate the whining cry babies from the mature adults amongst us. For believers in Jesus Christ, obedience matures our faith and transforms us into the image of Christ (a work never completed during our lifetimes). In our humanity our flesh tugs at us to rebel or be tempted in directions other than the leading of the Holy Spirit. But by focusing on His incredible gift of grace, studying His holy Word, and submitting to the leading of the Holy Spirit we will end in a better place for sure. I have seen it in my own life and in the lives of others. His will is best. His timing is best. Why? Because He loves us and because He is God!

These thoughts came to me after reading an interview of Ravi Zacharias in the RZIM Summer 2015 newsletter and listening to a message by Pastor Paul Mowery of Harvest Fellowship in Leo, Indiana. At the close of his message on Romans 11, Pastor Paul encourages us to “be about worship,” praising His great name for having mercy on us as recipients of the Lord’s grace. We are not to dwell on what each of us may have done that draws attention to ourselves. We are to be about Him: worshipping our Father God.

Lately I am struggling with these themes. Many of my posts here have tried to pull something meaningful out of the challenges of a wretched illness. As the days wear on with the setbacks of late, I have found myself literally screaming out my anger at God with the wails that accompany the convulsive seizures. “Why do you hate me?” Oh yeah, it’s bad. Even my beloved Steve who has been at my side during a fair amount of this hell admits his anger at God. And we are convinced that this is an o.k. thing to do. It is not an o.k. place to stay, however. And it is certainly not an acceptable attitude to act upon.

You simply cannot be angry at someone whom you do not love dearly. Such is our dilemma. We both love the Lord, Jesus Christ, and are humbled, grateful for His mercies in each of our lives. We have so much goodness between us! We are grateful for so much! And in our humanity we are broken and don’t like the brokenness. Way down deep we are hurting and it is this hurt that fuels the anger. Admitting this will be the way out, the way back to fellowship, the discipline that will bring obedience, the song of worship yet to come . . .

⁷So, as the Holy Spirit says:

“Today, if you hear his voice,
⁸ do not harden your hearts
as you did in the rebellion,
during the time of testing in the wilderness, (Hebrews 3)

***********

Therefore, holy brothers and sisters, who share in the heavenly calling, fix your thoughts on Jesus, whom we acknowledge as our apostle and high priest. ²He was faithful to the one who appointed him, just as Moses was faithful in all God’s house. ³Jesus has been found worthy of greater honor than Moses, just as the builder of a house has greater honor than the house itself. ⁴For every house is built by someone, but God is the builder of everything. (Hebrews 3)

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

⁶being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. (Philippians 1)

Today with the faith of a mustard seed (that I understand is rich in nutrients of which I am needing anyways!) I will choose to honor and worship the Lord, my King. He has built this frame in which I dwell and within it dwells the Holy Spirit. Broken or not, it is the vessel from which I will praise His name all of my days. I lay my angst on His mighty throne of grace, with great expectation of His promise to redeem it for His glory.