hope – Page 32 – Jesus is for the Wounded

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!

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¹³You will seek me and find me when you seek me with all your heart. Jeremiah 29:13 (NIV)

Where have I gone?

Published on January 1, 2014January 1, 2014 by Jesus is for the Wounded3 Comments

Sometimes I just don’t recognize myself anymore. I have used many words for myself such as Julie Anne, Recovering Type A, Recovering Catholic, Adult Child of an Alcoholic, Jul, Child of the King, Snookums, Just Julie, and Booberry. Many other labels inside my head will not make it to this blog as they are unkind and reflect the stinking thinking that was an outcome of my childhood. While I have come a long way there is still so much to do!

My biggest challenge these days is having some kind of identity when my world is smaller; there is less going on. I am sick a lot of the time. I am isolated most days. I go fewer places, see fewer people, engage in fewer activities, and generally do less than at any other time in my life for longer than any other time in my life. Whilst engaging in various activities a person engages in various roles that comprise one’s identity, for example: friend, church goer, Master Gardener, sister, sister in Christ, kayaker, exercise enthusiast, and so on. All of the roles that I have mentioned have severely diminished for me in the past 2 years because of a serious illness. I do not know when this will change. The tendency is to ask the question, “where have I gone?”

I really miss my life before illness. Sure it wasn’t perfect. I still had chronic pain, went to the doctor and had some type of treatment for pain a couple of times per month, and limited my work schedule to a maximum of 30 hours per week. But I was also the most physically fit I had been in my entire life, had the greatest financial freedom that I have ever had, enjoyed rewarding work as an occupational therapist with a flexible schedule, and went to lots of neat places with my amazing husband. My mind was sharp, my confidence was growing, and I felt really loved. Things are more mushy now. Most of the time I feel lost. I am not even convinced I have the correct diagnosis or treatment plan. So this translates into the reality that I don’t really know when I will be well again. This is tough stuff indeed.

And yet there are many new activities that have emerged these past two years. While I don’t work in all-things-gardening as much, I did become an Advanced Master Gardener AFTER I got sick. That was an amazing and humbling accomplishment! The Lord gave me the opportunity to explore blogging, learn more about social media, publish an eBook (Hope Beyond Lyme: The First Year), learn to make macramé jewelry, and launch an online jewelry business (Trinity Jewelry by Design). I’ve made some amazing friends via a local Lyme Support Group in addition to some compassionate folks online. I have kept a journal for most of my life and now my blog has a growing list of really cool followers from around the world. Talk about humbling! Wow. If only you could see my heart right now, transforming from an identity crisis between the lines of this blog tonight to a woman with a vision. You do that for me, Gentle Reader, guided by the Holy Spirit. Thank you for listening as this gets worked out within me . . .

If we were to examine the experiences of my life, we would probably agree that I have had a life that has been harder than most. Over and over again I have had to find Little Julie then Jul and Just Julie amidst a firestorm of hurt, loss, and strife. I have come to understand that the Lord has had His guiding hand, loving arms, and protective wing around me all along where the good people and perks of life were missing. He has allowed the trials and tears to bring me closer to Himself, to help me to see beyond the circumstances around me. The Lord has shown me that the bad stuff was not wasted or intended to hurt me. The Lord wants me to be complete and allows all this to conform me into the image of Christ. I pray that I will not lose heart during the refiner’s fire. I pray that I will see His blessings soon as I have seen so many times in the past. I just gotta hang on a little longer, let Him carry me a little more.

Where have I gone? I am in another wilderness experience like Moses and the Israelites of the Old Testament who wandered in the hot, dry desert for decades wondering if they would ever be “there yet.” I must keep my eyes on Jesus: the light that leads and the cloud that blots out the forces of evil that taunt my doubts, fester my feelings of inadequacy. It just doesn’t matter anymore where I have gone. What matters now is where am I going?

Happy new year, Gentle Reader. Will you go with Him too in 2014?