Recovery from Serious Illness: Lyme, CIRS, & More – Page 107

Taming the Savage Beast

Published on January 19, 2014January 19, 2014 by Jesus is for the WoundedLeave a comment

“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.

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)

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

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

My Story in Brief

Published on January 18, 2014 by Jesus is for the WoundedLeave a comment

Here’s a brief overview of my wacky journey to date, written for another blogger. I’m hanging tough as this time of illness continues, leaning on the Lord and witnessing His grace in my life every day. I have so much for which to be grateful! You too? :J

First Name: Julie
Age: 53
Gender: Female
Where do you live? Fort Wayne, Indiana

When/Where do you suspect that you contracted Lyme? My doctor suggested it as a possibility in January of 2012. He’s a family practice physician and chiropractor.

When did you first begin to feel ill or start to notice strange symptoms? I have had fibromyalgia since 1992 in addition to some thyroid and female/hormonal issues. Regardless, I was the fittest I had ever been in my life when I became extremely ill with viral hepatitis in October of 2011, after kayaking in a local reservoir. When was unable to recover as time passed, my LLMD suggested underlying Lyme and that I read about mold illness too.

What were they? The worst symptoms included: ongoing nausea, increased muscle pain and headaches, decreased activity tolerance, worsened ringing in my ears, back pain, lightheadedness, extreme fatigue, fractionated sleep, and genital, stomach, and dental pain.

How many doctors did you see before reaching an accurate diagnosis? If you start from the fibromyalgia diagnosis in 1992, the number would be around 60 including chiropractors and a naturopathic physician. If you start with October of 2011, it would be 2: the emergency room NP and my LLMD.

Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what? It’s unclear if the myriad of health issues over the past two decades are related to Lyme Disease or not. I started treating for Lyme (first with antibiotics then a Rife machine; supplements too) after confirmation of the diagnosis from biomeridian or electro-dermal testing in January of 2012. A year later we discovered that we had mold in our home and remediated our entire home. I had a significant history of mold exposure in a work setting about 6 years earlier and a genetic disposition that favored mold illness more than Lyme disease. Another year later and currently, a systemic yeast infection (level 3 of 4 levels) has taken center stage in my course of treatment. The treatment of Candida has been as difficult as that for Lyme or mold!

What are the main symptoms that you experience currently? Virtually every day I feel like I have the flu, experience muscle and joint pain, endure headaches/neck headaches, and battle weakness and fatigue. The other symptoms noted above persist as well.

The WORST SYMPTOM by far is that of seizure-like episodes! The first episode happened one month after the onset of viral hepatitis. Then I had no episodes until I began treating for Lyme disease with the Rife machine and after the initial trial course of 5 weeks of antibiotics. Seizure attack episodes thus began around April of 2012 and have gradually worsened since then: generally up to 4 hours per day! If I did not have a personal relationship with the Lord, Jesus Christ, I would not be able to endure this personal hell.

What does your treatment regimen look like? I can no longer tolerate virtually all of the supplements or compounded medications for Lyme or mold illness without the seizure attacks escalating into convulsions! I have maintained an increasingly and very strict Candida and mold-free diet for the past year. Treatment focuses on Candida (rotating anti-fungal meds. & supplements as tolerated); I am no longer able to tolerate the compounded medications of Dr. Shoemaker’s protocol for Chronic Inflammatory Response Syndrome (www.survivingmold.com)

How much do your symptoms prevent you from living a normal life? My life is severely restricted to chemical/fragrance-and-mold-free environments and settings void of loud music and bright lights. I have not attended our church in about 8 months as it is a water-damaged building. Physical deconditioning restricts former activities including kayaking, bicycling, walking and gardening. I am grateful for the occasional exceptions and was able to maintain some raised bed gardens this past year. Yeah God! Travelling is particularly difficult and severely exacerbates seizure attack episodes no matter what precautions we try! After 30 years as an occupational therapist, including adapting my career with various events of my life, I have not been able to work in 2 years. I miss working!

What do you like to do in your free time and how is this different than before you were sick? As tolerated, I blog in the middle of the night at: http://www.justjuliewrites.com on topics incorporating my faith in God and hoping to encourage others with my story of recovery from chronic illness. I am grateful to have published an eBook this past October entitled: Hope Beyond Lyme: The First Year In August of 2012, I started making macramé hemp jewelry to keep myself sane; today I am grateful to offer jewelry from two missionary organizations helping families at risk. A donation will be made to Ianna House (a residence for persons with Lyme Disease) for all Lyme disease awareness items purchased at: Trinity Jewelry by Design.

What do you want people to know about Lyme? Examine carefully and journal your symptoms (response to treatment, etc.), do online research especially at http://www.ilads.org including vector-borne co-infections, join online Lyme forums, do IGenex testing (www.igenex.com), find an experienced Lyme AND mold literate physician (s), and consider several treatment options as you begin this long journey to healing.

What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme? I don’t know how anyone can recover from this difficult illness without two things: 1) the love, care, and support of other people in your life and 2) faith in the Lord, Jesus Christ who loves you, sees your suffering, grieves with you, and will carry you through the ups and downs of this difficult journey. He is our true source of hope! When struggling with hours of seizures at night, He meets me there every time and comforts my weary heart, my weary soul, my weary frame. Sharing my faith with you is my reassurance that this experience won’t be wasted! I welcome your thoughts and would love to meet you, Gentle Reader, through my blog (www.justjuliewrites.com) or on Facebook at: Hope Beyond Lyme. Take care, Julie

He knows

Published on January 10, 2014January 10, 2014 by Jesus is for the WoundedLeave a comment

Whenever I am down and out

Instead of rising up and giving a shout,

I’ve learned to keep my big mouth shut

And hold my poker face to save my gut.

I used to sputter and blurt out a reply

And earned a reputation like that of an un-nice guy;

They called me “bold” but it got me no where

Just too many nights right here alone in my under____.

Well not really but it rhymed you see

‘Cause appearances were all the rage back then to me;

All the while He waited in silence

Beckoning me with hope and a promise.

Decades flew by and it weren’t too pretty

My youth faded: I lost more than an itty bitty:

My husband, my mom, my brother, my dad

I had more than enough reasons to be quite sad.

So where did I land when the fires took it all

The shell of a woman who once spoke a little too proud and tall?

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Hmf. This broken child crawled before the throne

Put down my sword and picked up His own.

The dragons we slew: the Christ Jesus and I

My strength now His, my voice that of One on high.

My steps softened, tears sweetened at last and for better reasons

Even the fruit of my labors grew differently in the coming seasons.

I have not any idea where all this will go

Will I ever “get there” or find the answers I need to know?

It almost doesn’t matter ’cause even one bummer leads to the next joy

So ‘just hold on Little Julie, this next chapter’s gonna be quite a ride!

I was talking to God the other day . . .

Published on January 7, 2014January 7, 2014 by Jesus is for the Wounded2 Comments

I was talking to God the other day, the night before the big snowstorm hit the Midwest and the night before this head cold took me out for a few days. It was after 2:00 a.m. The house was quiet, the Christmas tree still stood tall and magical in the living room, the pup was warming herself on the rug in front of the floor vent in the kitchen. My beloved was fast asleep in bed down the hall. Here I was prowling about the house as usual in the wee hours of the morning.

Usually I head to the kitchen for a snack before my 3:00 a.m. bedtime and read the Bible verses for the previous day from the Android Bible App. After that I’ll finish perusing any garden catalogs that have come in the mail, clean up the kitchen and head to bed. But something gave me pause. I believe it was the leading of the Holy Spirit beckoning me to come dwell before the throne of grace before retiring for the night. And so I did.

I sat in my favorite little chair in the living room and looked out over our home. Gratitude overwhelmed me as I realized all of the blessings laid out before me. The Lord had restored the years the locusts had eaten (Joel 2:25) and provided nice furnishings, my husband’s shiny kayaking trophies, beautiful hardwood flooring and more for our lovely home. Laughter and activity filled these spaces just 6 days before as all of my husband’s children visited with their loved ones in person or via Skype. I was blessed to be able to serve them with treats and home cooked meals before turning in early to rest and recover for the night (sight unseen). All they saw was the good stuff and that is o.k. Sitting before me were opened gifts still gathered under the tree: sweet and thoughtful too. My Lord has been so good to me!

Then I heard a whisper, a presence as if my Counselor, Friend were sitting there right with me in the twilight. He reassured me that everything would be o.k. He allowed me to fill my heart with memories and reminders of His goodness that would be needed in the difficult days ahead. He made it clear that He would always be with me and have my best interests at heart. My Jesus filled me with His love that night. It was a sweet treat indeed.

Taking time to be alone with our Heavenly Father, our Heavenly Husband, our Immanuel makes the days, the nights more meaningful. I know that when I stop for a moment of reflection, I can see His hand leading me, holding me, carrying me, protecting me. I trust that you will see Him too as this Christmas season draws to a close. His omnipresence reassures me that He will be there with you in your time of need just as He is here with me now and the other day. If you don’t know God personally, I pray that you will spend some time with Him and His Word alone somewhere meaningful to you. I tell ya, it’s a really cool thing to do!