Tag: Lyme seizures

He knows me so well

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There comes a time when you know that you just don’t know what the plan is.  There you go, Mrs. Wesolowski, my late English teacher and queen of everything in life but the dangling participle.  Forgive me but in 11th grade I would have no idea where I would land just past mid life.  The dangling participle is apropos.  I am lost as to my exact location.  All I know is how I got here.  I have no idea what the game plan is.  Thankfully, to Him I am right where I am supposed to be.

I don’t believe I have ever had so many noxious symptoms at the same time for such a long period of time.  Just when I believe that the Lord is bringing me some relief or leading me to some new insight into what to do, I find that I am still clueless.  I am working hard to no avail (i.e. extremely restrictive diets, daily treatment logs, internet research, networking, and so on).  And then a new problemmo emerges.  Perhaps if I could scope my own gut or brain I would feel a little better about things, more in control I suppose.  That won’t happen of course so I am left at the hands of overstressed and overworked medical professionals who need to make sure their butts are covered and tracks are documented in a government database.  Type, type, type during my appointment, noting the results of some test.  “Look me in the eye!”  is all I am asking.  Just once look me in the eye and ask me, “how are you feeling today?”  After all, that is why I am there!  I know that I “have a lot going on,” and am “sensitive” to virtually all of the treatments prescribed.  Then again who really knows if just one more test or consultation will really make a difference at this point.  While I do believe that I will be well someday  even if it is in heaven, I have no idea how to live until then anymore.

The bottom line for me is this:  I am not well and it is not changing.

Now with that out of my head and onto the page I find that there is nothing left to write.  There is nothing left to say.  I am at my wits end with a beat up body and depleted spirit.  There is only one place to go since crashing in the bed did not bode me well earlier this evening.  That place is the foot of the cross of my Lord, Jesus Christ.  You know my aching heart.  You knew me before I was born and all of the days of my life.  You saw this breaking point long before it came.  All the breakdowns that have gone before were just a warm up.  I give up.  Take me as I am.   crucifix

Sorry, Gentle Reader.  This blog has no insight or answer by its weary end tonight.

I’m stuck to my chair!

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Again it seems that my greatest clarity of thought arrives after 3:00 a.m.!  Such a strange phenomenon.  I am always amazed at all of us web crawlers on Facebook at this tender hour.  So I’m not alone after all.  So it’s o.k. then, right?

Sometimes I’m not so sure I’m doing this thing right:  trying to recover from a serious illness that is.  The findings, colorful cords, and beading wonders of Trinity Jewelry by Design sit right behind me, untouched for almost 2 months.  The creative juices appear to be flowing more through the keyboard than the macramé knotting board these days.  Who can think in color when just three  hours earlier I was nearly wretching from the noxious seizing of my once functional central nervous system?  Tics of organic origin.  Non-epileptic seizures.  Whatever.  I miss the once creative and functional Julie!

My beloved Steve is so gracious with me at these low times.  All I could do tonight was yelp and squeak a bit as he sat within earshot in our nightly arrangement of sorts.  I muttered a “help” and he came near, warming my frigid hands and feet with his comforting frame.  The episode continued, alas, for another hour or more.  Frankly, I lost track of time.  All I know is that I did not make dinner this evening; I’ve got another shot at making his lunch for work tomorrow after we part ways tonight Gentle Reader.  Looks like I’ll be able to pull some good eats together this evening after all.

In the song by Casting Crowns, Mark Hall sings of praising the Lord in the heartache of life’s storms.  Perhaps you remember this moving Lifesong ballad from 2006?

Praise you in the Storm

Yes, and perhaps you remember me posting it in a previous blog last year as well.  No big deal.  No matter how many times it takes, no matter how many tears may fall, and no matter how many blog posts you may endure the message will still be the same:  my face is towards my Immanuel through the storm to the rainbow waiting for me at it’s end.  Period.  There is nothing else for me to do.  My Lord has seen fit to keep me here with lightening bolts running through my mind each day.  Seizures can kill people.  I am still here.  For me the seizure attacks are a bit of a right of passage.  The more I have, the more my angst turns into breaths of anticipation.  What will come with the next breath?  No worries about tomorrow.  The moment here and now!  If my mind wanders to anything stressful, the symptoms worsen.  So I am learning to live in the length of one breath at a time.  One s-i-n-g-l-e b-r-e-a-t-h at a time.rainbow and storm clouds

No wonder it is difficult to leave my chair most evenings!  I am weak and tooling around on the computer is certainly a step up from lying there, writhing in bed.  Nausea and sweats can increase if I do too much unless there is some sort of a clearing phenomenon first.  When that happens I do as much as I possibly can before the freedom ends.  Sometimes I’m  not quite finished with a task when sickness returns; it’s always a bit tricky when that happens.  And that’s when the Lord adds His incredible increase, endurance, grace.  I cling to the God-breathed promises of His Holy Word and He delivers me without fail.  This is where my spiritual gift of faith comes from:  witnessing His faithfulness in my times of need.  Faith brings hope as well.

He is worthy of your cries my friend.  No matter how big or how small, the God of infinite mercy and love is ready, willing, and able to receive the desires of your heart.  If you don’t believe me then your definition of God is not big enough.  ‘Nuff said.

I guess it’s time to get up now.   Will it be leftover barbeque meatloaf or smoked turkey sandwiches for lunch tomorrow?  Gee, maybe I can even melt some cheese on the bread for a tasty treat.  I love spoiling my Stevers.  He is so good to me.  :J

My Story in Brief

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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

Parking Lot Poem #1

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Sure was a tough time in my life when transitioning from married life to single life.  The refining fire was intense, laden with more trauma than I ever thought I would endure in such a short period of time.  Separation, divorce, 5 moves, 4 jobs, 2 injuries, a condo fire, death of 3 family members, and my mother’s cancer story contributed to over-the-top stress.  I have so much to be grateful for these days, that’s for sure!

So how did I cope?  First my faith in the Lord grew stronger.  Second, I needed counsel and found it through a few remaining close friends and a professional or two.  Three different support groups related to grief and divorce convinced me that it was not me who was going crazy:  my life circumstances were crazy!  I began journaling more regularly too.  Perhaps if blogging was in vogue in 2004 I would have started mine back then as well.  But one of the most useful tools was the smallest:  a little spiral notebook in the console of my car . . .

I’m not quite sure where the idea came from to journal in my car.  I found a small pocket-sized steno book called the “fat lil’ notebook” and kept it with me for making notes to myself.  One day it hit me when I felt completely lost that maybe I needed to write a little something more to clear my head, right there in the parking lot on June 10, 2004.  The first entry that I can find went like this:

It’s another parking lot poem this noon

Alas a month later in the rainy part of June.

My new job must end to save my integrity

And the work ethic I’ve carried with me for decades.

So now which way to turn, oh Lord

The great authority and provider of my life?

This makes no sense and yet it does:

To trust you no matter the chaos my days do bring.

For in the end or looking back when down the road,

I’ll see this day as one leaned on faith

And be glad I knew you when and where

I napped in the parking lot before a great swim once again.

 Years later it all made sense to me why the parking lot poems were so meaningful to me.  When we take a drive somewhere, we park our cars and go into a business or residence of some sort and leave our vehicle for a time.  We return later, put our belongings somewhere near us, turn the key in the ignition, and take off for our next destination.  The time in the parking lot or driveway is a point of transition from one destination to another.  We have completed one activity, gathered our things, and prepared to make our way to the next location.  During the short time when we are sitting and stationary, we might have a quick thought about what has transpired (did we accomplish something or did we encounter difficulties?) and think about where we are headed next (how do I get there and who will I see/what will I do there?).  The brief moment allows us to re-group, re-gather, re-launch until it’s time to go back home again.  This time goes quickly for most folks, I reckon.

That time did not go quickly for me at all.  I often got stuck in the parking lot when I was trying to move from one activity to the next.  I cannot explain it exactly.  I just know that the overwhelming burden of my life at that time made it nearly impossible at times to make transitions, change activities, or gear up for the next item on my “to do” list.  Have you ever experienced this Gentle Reader?  I just could not move on.  I couldn’t even tolerate music or news on my radio as it became like noise in a crowded bus terminal laden with diesel fumes.  I would often sit there in my little black race car (aka Honda Civic) in silence for what felt like a long time before I organized my thoughts and initiated the steps to get going again.  This is where the Parking Lot Poems changed everything.

Poetry is a looser form of communication than prose.  There aren’t as many rules in free form poetry, you can stop and start at any point, and emotions can blurt themselves onto the page in incomplete sentences.  It gets the words out quicker, eh?  Do you want to hear something else crazy?  After that 3-year period of time when writing poetry was such an instrumental tool in coping and healing, I stopped writing poetry.  I guess I didn’t need it anymore.  Oh I tried a few times but the words simply did not flow freely.  No more parking lot poems for me!  My favorite poem that was initially written in a parking lot became part of a 9-foot mural on a wall in my home, the one with the custom window treatments I wrote about earlier this past week.  I’ll save the story about “The Wall” for another time.

For this early morning writing, I’m just using my newer friend of blogging instead.  I am having trouble sleeping this day due to some noxious events.  Sure got some good thinking done tonight though and for that I am grateful.  Better go park myself back in bed before the sun comes up and try to make a go of sleeping again.

Thank you Lord for your gift of words.  Your Word is how we know you and fall in love with you.  Hmmmm.  Reminds me of a song.  May I sing it in my heart to you Lord?

Words

When the time is right

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One of the hardest parts about chronic illness for me (longer-duration illness, not permanent, hopefully!) is the change in my relationships.  I’ve written previously about the loss of casual friendships, the ones based upon common interests or gathering places.  Today I’m talking about the one between a husband and wife.

Steve and I have been married almost 6 years.  I call him my “intended beloved” since I believe the Lord has blessed me with an amazing man of God as my life partner.  We came together in our late 40’s, having learned much about life, people, and the Lord’s enduring grace in the years before we met.  We’d both lost our youngest sibling and the last of our grandparents within the past 10 years, shared both similar and completely opposite interests, had to relocate due to divorce, seen plenty of changes in the world around us, and came to a saving faith in Jesus Christ as adults.  Still when we got together we needed to work on a few things as a couple.  I believe these things have become our strengths and bonded us together for life.  Yes!

Steve and I share the “love language” of caring touch.  (For more on the 5 love languages, see the work of Gary Chapman.)  Therein the challenge of late lies.  The most noxious symptom of Chronic Inflammatory Response Syndrome for me is seizure-like episodes, 3-4 times per day.  Most any sensory stimuli can make a seizure attack worse or even trigger one if it is intense enough.  An episode can become  worse after it starts if Steve or anyone touches me.  So imagine a loving spouse attempting to comfort his or her beloved at a time of severe illness, reaching out and discovering that the gesture actually makes the person worse!  And if this happens over an over again, despite the caution, precautions taken to be gentle or vary the type of comfort, the spouse can become discouraged.  In our marriage, we have decided to work with the symptomatology and find a firm touch or closeness by proximity that sort of worked for me.  Thankfully, Steve did not stop trying altogether.  I understand that could have happened.

After all, the worst seizure attacks and convulsions happen late at night.  Steve often needs to go to bed to get up for work or another commitment the next morning so he simply cannot stay up with me night after night.  Our physical intimacy suffers.  Oh and if the attack isn’t so bad and we attempt marital relations, it’s a crap shoot whether or not the noxious symptoms start again.  Can you imagine turning something intended to be precious into something so ugly?  We often don’t even “go there” if I’m feeling sick or I’m in “pre-tic mode.”  The heartache of frustrating my spouse isn’t worth the Russian roulette we must play to see if things are going to work out o.k.  Stopping a tender moment also wrecks my thought process; it wrecks “the mood” for me.  Steve just says, unbelievably, that he doesn’t mind or that we had a time of closeness anyways.  Where do they make guys like him anyways?  Certainly I had not seen any in my past . . .

And this is where I must trust the Lord to sustain me, to sustain Steve-and-me through this season of our relationship.  I am incredibly blessed to be married to a man who loves me truly, “in sickness and in health.”  I did not experience this when I was married before as a young woman.  The Lord allowed certain health issues at that time to challenge us, test us, deepen our faith and we both failed to lean on His leading to overcome the trials.  In the end, my former spouse turned to another woman for solace and physical intimacy.  She was an unlikely comfort:  wealthy, mother of 6 children, and spouse of a man about to be imprisoned for embezzlement.  Craig left anyways.  And what that left me was a fear of relational intimacy or at least of trusting another man to endure the inevitable trials of life.

In the time that followed as a single woman, I turned to my Heavenly Husband for comfort, protection, provision.  He was my constant companion and much healing occurred.  It wasn’t until a time of serious illness struck 2 years ago and 4 years into my marriage to Steve that I realized a little more recovery was needed.  Steve’s steadfastness strengthened by his true relationship with the Lord has never waivered.  Never!  I am humbled and grateful.  I often see in Steve:  “Jesus with skin on.”  Steve has been wounded by his past and an ex-wife who disrespected him terribly.  Regardless, he has rarely brought any vulnerability from that experience to our marriage.  He, too, has allowed the Lord to “restore the years the locusts have eaten” (Joel 2:25), rising up to become the spiritual leader God intended.  So glad he’s tall too.  I love looking up to my Stevers.

When the time is right, when we have submitted ourselves to the refining fire that can be the trials of life, when we are faithful to the calling the Lord lays before us, we too may be rewarded with blessings beyond belief.  Those blessings may not be what many think of as gifts or rewards.  For me and my beloved, those good things are the ability to overcome the wretched things of life in a way that actually deepens our love relationship together as well as our walk with the Lord.  My hope in writing this is that you are also seeking the One who knows your pain and loves you just as you are:  the person of Jesus Christ.  (Psalm 41:1-3)  He may indeed bring you an angel to minister to your needs, a “Jesus with skin on.”  He may bring you to the foot of His throne of grace a few times in desperation, alone.  I know that He will not frustrate you beyond what you can handle, however, and will fill your heart with unspeakable joy someday.  (Romans 5:3-5)

I am grateful to see the latter despite wretched illness.  I pray that you too, Gentle Reader, will be able to see all this and more when the time in your life is right.  (Ecclesiastes 3)  The sorrow will not be wasted, of that I am sure if we but keep our eyes fixed on the face of Christ.  We may even get a sweet snuggle with someone special too!

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Addendum:  A new medication is bringing new hope.  I’m down to about 1 attack per day and they are less intense.  We are holding onto hope as this journey of illness appears to be changing.  Praise the Lord!!!!