Just Julie Treatment Update

Brief update:  I seem to be in what an airline pilot might call a “holding pattern” lately.  When I can break through the perpetual feeling of sickness and get myself out of the house, even if it is to our backyard, there’s always a backlash of noxious symptoms.  Recently my chiropractor recommended a heavy metals blood test and after a month of getting the paperwork and procedures right we have the results:  high potassium and very high mercury.  Yipes!  So my husband and I are investigating chelation therapy.  I have an appointment with a Doctor of Osteopathy who provides chelation and other medical, nutritional interventions.  In the meantime I’ll check with my family practice physician and see if there’s enough data to proceed with caution.  We will be covering this in prayer.  For most folks chelation is a difficult journey.  But hey, I’m familiar with that already, eh?

More details:  The daily 2 to 5 hour waking seizure attack episodes continue.  One day each week the episodes exceed 8 hours on and off during which I am largely bed bound.  If I have pushed myself to complete heavy gardening tasks or more than about 2 hours of appointments outside of our home then the episodes can increase to 12 hours.  The rest of those days is pretty worthless.  I have at least two “worthless” days at home each week anyways, regardless of my activity level.  These are days where I pretty much take advantage of the lovely “3 hots and a cot” afforded by our home.  I may see you here at the computer and mope through other very sedentary tasks.  Dinner may or may not get prepared.  Thank goodness for my homemade freezer meals and frozen burritos for Steve on days like these!

The normal sleep-wake cycle remains elusive for me.  When I do go to bed around midnight it is usually because Steve has carried me there in the neurological collapse-mode of a seizure attack.  This happens twice per week.  I’ll pass out at some point thereafter only to awaken in less than 4 hours, usually with another episode of tazoring.  Many days the tazoring wakes me up in the middle of the night.  Good grief!  That’s what happened last night prompting this blog.  When I do wake up in the middle of the night I have to find a way to yank myself out of bed or they will continue indefinitely!  This also happens twice per week on average.  The other nights I endure an episode sometime between sunset and midnight then I am wide awake until 4:00 a.m. or so.  If I can wait until I feel sleepy then the episodes falling asleep will usually be shorter and sometimes not at all.  I love it when the latter happens!  The best schedule for me then is to be up late, go to bed and sleep until noon-ish, endure a shorter waking tazoring then attempt to move forward with the day.  I love days when I do not have any appointments that disrupt this schedule!

The only “treatment” I can tolerate at the moment is a strict diet, coconut oil, colon hydrotherapy to detox, and extreme mold avoidance.  Occasionally I can take a short walk late in the afternoon or use our elliptical for 5 minutes, usually in the middle of the night before bed.  My diet is mold-free, gluten-free, sugar and sweetener-free, dairy-free, and low oxalate.  The latter has produced some detox reactions that appear to be beneficial; bone broth is incredibly nurturing to my digestive tract.  Most medications, pharm-grade supplements, and typical detox/immunity foods (such as lemon water, probiotics, ground flax seeds or oil) produce convulsions.  Not good.  This syndrome has a name:  Chronic Inflammatory Response Syndrome or Multiple Chemical Sensitivity.  The good news is that my gut health is better than it has been in a long time.  That tells me that the dietary strategies are working!  There are times when I feel more alert and my thinking is clearer.  At times my memory is better.  To my delight the creative juices are flowing again as reflected in my latest designs at Trinity Jewelry by Design.  And sometimes I am even able to make jewelry during the daytime instead of just with the crickets outside the window of my cute little studio area . . .

October 11th will mark the 3 year anniversary of becoming sick.  (For more on that story, see the About Julie page.)  I’ve been off from work for 2 1/2 years now, the longest since I started working in at the Penny Candy Place as a teenager.  No work or disability income is in sight.   The Lord has provided for my every need through my gracious husband and His grace.  Through it all Steve and I have been challenged to the ends of our human strength through unbelievable trials yet somehow feel closer to each other and to the Lord than ever before.  Steve is my hero!  DSCF0245We trust in Proverbs 3:5-6, Psalm 41:3Psalm 71:14, Revelation 21:1-8 and more.  The Lord is faithful to His Word:  we have seen it, we hope in it, and His living Word carries us through it all.  Even in those split seconds when it feels like my heart, my breathing, and my brain waves have ceased to function and I do not know if life will continue for me, I am no longer afraid.  That’s how real the hope of heaven, the reality that my eternal life has already begun as a child of the King, the loose grip I have on the things of this earth are to me.  Oh Gentle Reader, can you say that too?

So many unknowns fill our days.  We can respond with woe and fear or we can respond with FAITH.  And our faith is only as strong as that to which we apply it.  I hope that you will join me or have put your faith in the omnipotent God over all.  Yes, I wrote all. 

Nothing less will do when faced with the next, er, bite in the shorts.  You know I had to say it didn’t you?!    :]

 

A different kind of measure

The risk of including the Seasons of Love You Tube video from the movie RENT in this blog is that this song will now be in my head for days and days!  Well maybe that’s not such a bad thing, eh?

There’s so much Avant guard in this movie that I must warn you that it is not for either the faint of heart or for those who limit their recreational viewing to strictly Christian genre.  This is fringe media at it’s best.  This movie recognizes that love exists in other forms in life.  While I do not want these other forms in my personal life, I do recognize that this kind of “love” provides some meaning for persons who do not understand the perfect love that comes from a relationship with Jesus Christ.  Hopefully persons like the characters in this movie will find that wonderful unending and pure love someday.  It’s worth the journey to seek something more than what you can see around you.  It’s a different kind of measure of “love” for sure that extends beyond any season of life.

What I also love about this movie is the passion for life of the characters represented.  I have lost most of this passion with the onset of illness 2 1/2 years ago.  Sure I might get excited about a small project or celebration here and there but I am never very far away from a wretched episode that takes the “life” out of the moment.  Today was one of those kind of days.  The weather was beautiful.  As a matter of fact we have had a beautiful Spring here in the Midwest with adequate rain for the landscape and farmers mixed with incredible 70-80 degree temperatures and plenty of sunshine.  Most days have had some moments of clear weather, making way for virtually all activities outdoors even if for a few hours.  Enjoying 2 weddings and related activities last week were largely met with a backdrop of blue skies.  For this we remain grateful.  The unfortunate reality of today for me was the sprinkling of wretched episodes of seizure attacks every 2-3 hours.  I don’t even know why they happened.  We have removed the known triggers in our home and in my diet yet here I am living in shorter moments of time within which I can function.  Such a bummer.  It’s a different kind of measure of life as most of us define it.  It is life measured by moments.

In particular I love the lyrics of this song because it describes how I must live my life these days.  “In daylights.  In midnights.  In sunsets.  In cups of coffee . . . ”  You can see that I live my life by the task, not necessarily complete activities.  For example the walk I am grateful to have taken with my beloved and our pup this evening required a standing rest break for some noxious symptoms.  We then proceeded home at a slower pace and with me dragging myself along with a somewhat altered gait.  Sish.  Can’t a girl get a break?  I’d love to get back into exercising regularly; I am grateful for a few minutes that the Lord has granted here and there late at night when I’m more stable.  That’s what I mean by tasks.  I guess that’s all I can do right now are some tasks with a few modified activities in the mix.  It’s a different kind of measure of “doing.”

So if this moment is all I have with you Gentle Reader, I invite you to take 3 minutes to watch the You Tube video.  Think about your day today as you hum along or maybe consider the one you anticipate tomorrow with a new perspective:   a different kind of measure.  And if at all possible I do hope you will measure it in love, treasuring the love relationships in your life above all else.  If you should choose to include a personal relationship with God in that collection, perhaps putting Him in His rightful place above all the rest then I assure you that the abundance of love that will return to you will be immeasurable.  Seriously.  He is infinite so His love cannot be measured!  I tell you that His love makes a difference for me on a Sunday night like this.  I pray that His love will make a difference for you too in this moment and all the rest to come.  :J

Parking Lot Poem #1

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

Beyond the Movie and the Video: Part 2

In my last blog I shared the following resources for those wanting to learn more about the experience of Lyme Disease and the journey to healing:

— The movie:  Under Our Skin and

—  The video story of Christa and Justin’s experience with Lyme Disease.

Links to these two are in the References Section of the Categories in the right-hand column.  In this blog I’d like to go one step further.  In my humble opinion, the most important journey regardless of whether we are sick or well, however, has nothing to do with an illness.  The big, “It” in life to me is not determined merely by our attitude, our fitness, our success, our offspring, the work we do, the things we create.  I submit to you that what “it” is about in this life is where you land on the path to meaningfulness.

Research shows that on one’s deathbed many people ask:  was what I did, what I said, what I thought, whom or what I loved, what I experienced worth anything in the end?  King Solomon tells us many times in the Old Testament Book of Ecclesiastes that the stuff of this life in the end is all “meaningless, like chasing after the wind.”  Well if that’s coming from the wisest man that ever lived (next to Jesus Christ), putting our faith in the stuff of this life won’t get us anywhere!  So translated to my current life experience:  even if I recover from Lyme Disease and the associated illnesses, what does it matter if I have not wrestled with the larger questions of life?  And if this is true, why do I spend so much time and energy on the earthly things?  The answer is probably because I am weak and distracted from my Lord and Savior too much of the time.

I was reminded today by another blogger (The Busy Mom) that I would be wise to spend more time focusing on what the apostle Paul teaches in the New Testament Book of Philippians:

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. (4:8)

Sounds good.  These thoughts surely will create a positive effect on my healing from the inside out.  And further, the words of Sarah Young in her book Jesus Calling suggested that a spirit of thankfulness awakens my awareness to a multitude of blessings, cushioning the impact of the trials of life (p. 215).  She pointed to scripture that teaches we are to:

18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.  (1 Thess 5:18)

Therefore if I were to dabble more in these words of scripture I would simply fill my thoughts as noted above.  Yeah but I still couldn’t do it in my own strength when the noxious symptoms and tasks of recovering from illness distract me from everything else, even God’s Word.  When I am so weak that I cannot lift my head off of the pillow, I submit to you that to fulfill these commands are impossible without the power, grace and love that comes from a personal relationship with Jesus Christ.  The Holy Spirit of the Triune God must speak them into my heart. It is only with God, James also teaches us in the New Testament, that we can:

Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.

And the rewards of following the Lord are worth it.  I won’t be lost in the rumination of my mind going over and over my sorry lot in life when I meditate on these words.  I will no longer be distracted by pain, my list of “have nots,” and my unfulfilled wish list for this stage in my life.  Exasperation will give way to peace.  And most importantly for me, the journey will not be wasted.  The journey will be rich with meaning, with discovery, with wonder.  The earthly emotions of emptiness, guilt, discouragement, despair, and so on will fade away.  Joy will come in the morning and in the night as well.

Those gentle readers who have died to self and trusted in the hope, promise, and saving grace of the Lord Jesus Christ, know what I am talking about.  We can turn to His Word that He gave us for countless reminders of how He loves us, sees us exactly as we are in the circumstances and circus of our lives.  We will never be alone whether in the midst of others or weary on our sick beds (Psalm 41:3).  The benefits outweigh the risks of letting go and letting the God of Creation enter into our hearts:  the One Who will come again in glory, restoring us to glory.  We will dwell in a heavenly realm with him forevermore and that is a time far beyond our wildest imaginations.  Forever with the Lord will be a time rich with meaningfulness!

Yes.  I have Lyme Disease and a whole host of things wrong with me and my life.  Yes. I am a child of the King Who goes before me, leads me, holds me, knows me, and is coming again for me and for you too.  I pray that you will join me in looking beyond your circumstances for a NEW HOPE BEYOND LYME.  It’s worth it!

Trading My Sorrows for the Joy of the Lord