recovery – Page 14 – 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

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?

Forbidden Fruit

Published on December 28, 2013December 28, 2013 by Jesus is for the Wounded1 Comment

It’s everywhere. I look in one area then into another and I cannot avoid seeing it. I go to the store and displays everywhere tempt my senses. I must be strong. I look forward as if I am wearing blinders (those “harness winkers” or leather patches that keep horses from looking to their peripheral vision) so I don’t stray from my mission. The forbidden fruit beckons. “No!” I will not cave.

It’s not that I can do this in my own strength, by the way. The cravings are too great. Every cell in my body has probably been affected at some level since I’m without the glucose and carbohydrates that provide energy to battle the infection raging therein. Oh you thought I was writing about something sinister, didn’t you? Nope. It’s an elusive fungus, partially protected in a mucous-y biofilm but not sinister per se. It is CANDIDA! And at level 3 of 4 levels, gut yeast is hurting me badly. The “forbidden fruit” includes actual fruit plus food containing any form of sugar plus any simple carbohydrate or starchy vegetable. This includes all grains, even the gluten-free kind. Now even several months into this this extreme diet I have yet to see the endpoint.

Now let’s add another layer: any food that is fermented, aged, seasoned with just about anything but salt, or at risk for trace amounts of mold! Evidently even walnuts and pecans can harbor mold in the folded areas of the nut itself. Leftovers in the frig for more than 24-hours can harbor mold. Black pepper can harbor mold. And the list goes on. Tonight I decided to sacrifice some more seasonings to try to prevent the side effects of consuming the wrong foodstuffs. The consequences have been severe: three and one-half hours of seizure attacks plus hours of recovery yesterday convinced me of the need for some more tweaking. I also stopped one of the medications that feels like it’s killing me. When a pathologist stated online that seizures change the matrix of the brain, well that woke me up again to the seriousness of this battle. Seizures can be a part of a level 3 Candida infection. Geez. And most people associate yeast with vaginitis. That was a cakewalk compared to where I am these days.

Yes, this is tough stuff. Yes, it takes total discipline, focus, endurance, and patience with the repeated setbacks. Chronic illness requires grace from one’s family, especially one’s spouse. I am grateful for a loving husband who relies more on the Lord for his happiness and peace than on me. He sees things from a hopeful place and speaks to the little improvements or the sweet moments between us no matter how small. His God-given strength is very humbling. The only way we are able to endure this is through the love of our Lord, Jesus Christ and the leading of the Holy Spirit. We believe that this is the Lord’s plan for our lives and that He is here with us no matter what happens. And if it is His will, I will be well someday. I will be able to put to use that awesome carbon fiber canoe paddle Steve bought me for Christmas! Such a gift of confidence from my beloved. I love my man!

The forbidden fruit of today have become the hedges of protection I need to keep me from getting worse. Just like the corrective events of life (those we bring upon ourselves from our own mistakes and those the Lord allows for His Divine purposes), they are not to be hated, feared, avoided, or teased. We must face that which is forbidden and directly choose otherwise, place a barrier (physical or mental) in the way of temptation, and simply go forth on a different path that leads to victory. Nothing else will do if we want to win. I did not dink around with my diet at all during Christmas and I still was very sick. Imagine if I had “cheated” on my survival diet. I would have not been able to visit with family for three consecutive days, cook for several hours at a time, and enjoy a delightful time of fellowship. Sure I “crashed and burned” around 8:00 p.m. each night. The sacrifice was worth the reward that was available to me. The reward was greater this year than last year at Christmastime. That’s cool.

From here the journey ahead is unclear. I will continue the treatment approaches I have described above yet do not know yet if any new medical approaches are warranted. I have an upcoming appointment with my Lyme and mold-literate medical doctor where we will review the difficulties I have had functioning these past two years. There’s another functional medicine clinic of interest that is 3-hours away . . . We sure will be praying for direction about all of this in the new year. Wherever the path leads I know the Lord is already there. I welcome His plan for my life that has created more joy than I ever could have imagined on my own. If that joy must come through serious illness then I would not want it any other way. Really. I’m just believing what He tells me, you know. Picture me and Steve in an outrigger canoe along a sandy beach somewhere warm . . . Yes, I can picture it . . .

Gift idea to encourage those with chronic illness

Published on December 19, 2013December 19, 2013 by Jesus is for the WoundedLeave a comment

The first year enduring and battling a serious illness can test everything we thought we knew about coping with the trials of life. In this book, I share some of the more meaningful and encouraging moments of my journey as I sought to draw strength from outside of myself to endure them. My hope is that you or your loved one will find strength and hope that transcends the often difficult day-to-day experience for yourself or a loved one coping with a debilitating illness. I also hope that you will consider the hope found in a personal relationship with God. His presence in One’s life can make a difference in where a person lands when this particular journey of life is over. Will we have peace or will we have despair?

With a sincere heart it is my privilege to share these short vignettes with you. Let not these trials of ours be wasted, eh? Gentle Reader, are you ready for enduring hope that goes beyond what we can see? If your answer is, “Yes,” then I invite you to read, Hope Beyond Lyme: The First Year. May it also encourage you to learn that you are not alone, not today, not ever.

Discover from a fellow sojourner, her most meaningful and encouraging moments to encourage you or your loved one battling a serious illness. Find in one handy eBook (available in 9 different formats) the best blogs updated from this site plus several Bonus Pages too! Click on the link below for more information. Take care, :J

Hope Beyond Lyme: The First Year

Give the gift of compassion

Published on December 10, 2013December 10, 2013 by Jesus is for the WoundedLeave a comment

Know someone battling a serious illness and want to give them a meaningful and encouraging gift this Christmas? Give the gift of compassion and a copy of

Hope Beyond Lyme: The First Year

Now available from Smashwords.com and Amazon.com!

Now it’s available in 9 different formats so you don’t even need an eReading device to download your copy for just $2.99! To learn more go to: https://www.smashwords.com/books/view/371334 and be sure to click the “Give as a gift” link from any book page. Smashwords will email it to your loved one immediately upon purchase. If you would like it to be a surprise instead be sure to put your own email address where indicated, print it out when the order is complete and hand it to the person, well personally!

For Amazon Kindle shoppers, head to: http://www.amazon.com/Hope-Beyond-Lyme-First-Year-ebook/dp/B00G9WF1RK/ref=la_B00GAOAOI8_1_1?s=books&ie=UTF8&qid=1386631580&sr=1-1

Discover from a fellow sojourner, my most meaningful and encouraging moments to share vignettes of understanding with your loved one battling a serious illness. There is hope and with faith in God, we will find the true meaning and source of that hope.

Thank you, Gentle Reader, for helping to make this project possible! Just Julie