Home of the Brave

fireworks-flag

Yesterday on the Fourth of July we celebrated the independence of America from Great Britain.  Among many patriotic sayings is a phrase from our national anthem:  Francis Scott Key’s Star Spangled Banner:

O say does that star-spangled banner yet wave,
O’er the land of the free and the home of the brave?

Indeed this song that was sung while waving our American flag is still a symbol of heroism in the United States of America.  And yet I submit to you that within the hearts of the great and mighty that exude bravery are the once ordinary citizenry that the Lord rose up for great deeds.  Those neighbors, husbands and friends chose to align themselves with the God of the universe who reigns supreme and will come again for His own.  Similarly if anything I write here telling my own story reflects bravery then it is a reflection of those everyday heroes in my life that hold me up as well:  many more than I can list here.  Allow me to share with you.*

*A dear friend, Cindy, who checks in on me regularly despite her busy work schedule and home life.  From her I learned to de-mystify alternative cooking for health (a task which consumes much of my waking hours these days!).  Canned coconut cream from a downtown Asian food market is my new delicacy and gratefully it goes with everything.  She’s probably the best resource person I know for local health and food stuff, is extraordinarily encouraging, and has a heart bigger than her petite frame.  Love you girlfriend!

*Three regular readers of this blog who graciously let me know they are out there from time to time:  Jennifer, Sherry, and Amanda.  Some may say that it is not a real relationship when you meet a person online and don’t have any face time with them.  I disagree.  After all, I met my husband online via Yahoo Personals many years ago!  And we are living happily ever thank you very much after having bridged the gap from anonymity to familiarity.  Yes:  very familiar indeed!  I appreciate the prayers, sharing, overcoming spirit, and support of these three lovely ladies in their own heartfelt blogs.  Amanda generously read and reviewed my first eBook last year.  Thank you ladies!  Find them at:

My Color is Lyme

A Labor of Love

Amanda Lannon

*My brother and his fiancé, Mike and Lisa.  My brother had a severe stroke 3 months ago and was subsequently dumped in an inner city nursing home because he didn’t have insurance.  Together they are navigating the difficult processes of securing Medicaid and Veteran’s Administration benefits.  The paperwork, dead ends, delays, and frustrations are intense as time passes without comprehensive medical care or ongoing rehabilitation.  While our conversations about all of these are certainly lively, I am impressed by my brother and Lisa’s overall prevailing spirit.  Mike is looking forward to the day when he can serve others in a similar situation possibly as a dog handler in a pet therapy program.  He is delving into the Word of God often now.  Lisa is fulfilling well her new role as Guardian despite being way out of her comfort zone.  These are good things.  I’m proud of you both!

*My husband Steve.  The love in his eyes for me never changes whether he is carrying me to the bathroom (due to daily episodes of neurological collapse) or showing me how to shoot a pellet gun at an empty gallon jug of orange juice.  He may not have had enough sleep for the previous four nights in a row and yet his love never changes.  He is my Jesus with skin on and greatest hero on this earth.  I love you River Bear!

*The Lord, Jesus Christ most of all.  When I found myself single at age 45, the Lord had become my Heavenly Husband and everyday companion.  He had to become real to me to fill the painful void leftover from my estranged ex-husband.  My Jesus also showed me the once empty places in my heart designed just for Him then filled them completely.  I know that I am never alone.  Ever.  He is the great I AM, worthy of praise, and a warrior for the cares of our days.  No matter what comes in this fallen world or how wretched, He has overcome all of it.  Those of us who believe in Him through a personal relationship with Jesus Christ will be saved and spared any more suffering when He comes again for His own.  The Lord is the ultimate hero in which we can place our lives, our confidences.  Every good thing and the bravery needed to face these challenging times comes from the one true God.  In the shadow of His wings I am comforted, protected, find rest.

For the nation of Israel, into which we believers are adopted as sons and daughters of the King, we find our freedom, courage to go on, and rest in the Lord.  It is the hope of my heart that you, Gentle Reader, will find these great gifts in the person of Jesus Christ too.  In Him we have the greatest of heroes:  brave beyond compare.  Now that’s a holiday worth celebrating today and every day.  Bang bang!

***************************

Psalm 147 (NIV)

Praise the Lord.

How good it is to sing praises to our God,
    how pleasant and fitting to praise him!

The Lord builds up Jerusalem;
    he gathers the exiles of Israel.
He heals the brokenhearted
    and binds up their wounds.
He determines the number of the stars
    and calls them each by name.
Great is our Lord and mighty in power;
    his understanding has no limit.
The Lord sustains the humble
    but casts the wicked to the ground.

Sing to the Lord with grateful praise;
    make music to our God on the harp.

He covers the sky with clouds;
    he supplies the earth with rain
    and makes grass grow on the hills.
He provides food for the cattle
    and for the young ravens when they call.

10 His pleasure is not in the strength of the horse,
    nor his delight in the legs of the warrior;
11 the Lord delights in those who fear him,
    who put their hope in his unfailing love.

12 Extol the Lord, Jerusalem;
    praise your God, Zion.

13 He strengthens the bars of your gates
    and blesses your people within you.
14 He grants peace to your borders
    and satisfies you with the finest of wheat.

15 He sends his command to the earth;
    his word runs swiftly.
16 He spreads the snow like wool
    and scatters the frost like ashes.
17 He hurls down his hail like pebbles.
    Who can withstand his icy blast?
18 He sends his word and melts them;
    he stirs up his breezes, and the waters flow.

19 He has revealed his word to Jacob,
    his laws and decrees to Israel.
20 He has done this for no other nation;
    they do not know his laws.

Praise the Lord. 

 

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

I’m stuck to my chair!

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

Best to Hang in There When “There” is Unknown Territory

With a brain fog or spaciness that defies definition, I humbly submit this blog update!

Tuesday began 2 doses of a promising new treatment for Chronic Inflammatory Response Syndrome:  vasoactive intestinal peptide or VIP.  The first dose was at noon and the second was at midnight.  I felt a little on edge as I went to bed within the hour of the second dose, followed by a few tic zips (such as the norm for me these days!).  What I didn’t expect next was the fearful images that passed before my eyes as I entered sleep mode.  No problem, really.  That’s what prayer is for and I called upon the Lord to sanctify my mind.  Prayer answered.  I was able to fall asleep without any more problems.

My next surprise came with an abrupt wake up at 4 in the morning with a vivid nightmare!  When I say vivid, I mean that the bats in my mind were landing on me, in color and I could feel them!)  Frightful indeed!  Low grade tics quickly escalated into seizure attacks, air hunger, shortness of breath, and at least 20 minutes of rotating noxious symptoms.  Not sure which was worse:  the nightmare or the aftermath!

I have had nightmares and this type of experience before.  The last one was at least 2 weeks ago so the timing may or may not have been related to the new medication.  After all, the pharmacist said it was a “benign” drug and my LLMD said that 50 mcg is a low, loading dose.  Yeah right.  I am overly sensitive to everything right now so it is no surprise that a nasal spray of a new hormone, deposited directly into the capillaries in my sinuses and leading into my blood stream, could shake me up a bit.  Sigh.  No problem again.  This is familiar territory.

Wednesday I decided to take a break from the VIP when I awakened feeling pretty beaten up.  For my daily treatment I just ran some Rife programs, slept some more and had a pretty good day overall for me.  The post-attack headache subsided and I was able to take care of a personal appointment and run a few errands.  I forced myself to get out and work in the garden later and it was soothing therapy.  I praise the Lord for His gift of Spring renewal here in the Midwest.  I love living here.

I took the next dose of VIP on Thursday at noon.  My nose started running right away but this didn’t last very long, thankfully.  Then brain fog settled in followed by a ramping up of my nearly constant companion of a low grade headache.  Regardless, I got going on some insurance matters that have needed attention for over a month.  Guess I’m at the next tier of taking care of things since moving home March 27th;  I was glad to “getter done.”  The day was going fairly well so I got to go to church with my hubby for the National Day of Prayer Service at our calvary chapel.  How sweet it is to worship with my Stevers, to pray, and to fellowship with other believers.  It had also been about a month since the last time I was able to go to church.

The worship was awesome.  However, during the service the music was sooooo loud, and the bass was soooooo loud that both of us had to plug our ears even though we were sitting in the back of the sanctuary under the balcony!  Turns out that plugging my ears is not enough to avoid sensory overload.   I cannot tolerate the vibrational sound energy and bass wavelengths of loud music.  I do not understand why it has to be so loud anyways?  We are there to worship the Lord Jesus Christ, not hurt our ears!  Unfortunately, things did not go well after I returned to wait for Steve in the car. I had to get out of there before the spill-over into seizure attacks would begin.  The music was the trigger that turned this multi-sensory-sick child of the King into what would turn out to be a 12 1/2 hour episode of seizure attacks.  As rocker Alice Cooper once sang, “welcome to my nightmare” once again.

Gratefully I was able to get out of the car by myself when we got home and walk gingerly into the house.   Gratefully Steve was available to help lift me off the couch two hours later after eating and resting, so I could get ready for bed.  Gratefully I was able to attend to my own self care and even make us some food earlier during one of the breaks in the action.  Gratefully I have some new positioning strategies in bed to minimize the impact the uncontrollable shaking has on headaches and other painful areas.  Gratefully Steve prayed for me both before we fell asleep and in the morning before he left for work.  Gratefully I was able to make a snack when I woke up ravenously hungry at 4 in the morning!  Hmmmm.  There’s that “4” number again.

The attacks tapered down by the time I was to finally get out of bed at 9:30 a.m.  Just a quick jolt welcomed me to my day and I was able to take care of myself and our dog.  Once again I was pretty beat up by the events of the last evening.  Twelve and one-half hours had passed since the episode began and it was finally over.  The shell of the person that is Julie was leftover to slowly get going, make my special dietary items, and take care of the stuff of life before my afternoon physical therapy appointment.  Gratefully I was able to start then later finish and mail the jewelry order that was due today.  But in the middle of the day and during physical therapy, there was another rebound episode of neuromuscular events followed by copious tears.  I am so sad.  This is really hard.  I am really broken.  Gratefully my therapist is trained in some calming techniques of myofascial release that work really well with me.  Even at my low energy level with soreness all over my body, I am now able to function again.

So this is chronic illness and the ups and downs of recovery.  One day you are excited for a promising new treatment and the next you are herxing from a reaction to the promising new treatment.  The physical therapist says that the seizure attacks seem “softer” than the ones I have had in the past.  O.k., I guess that’s good.  Maybe it is just part of the process of assimilating a new drug that crosses the blood-brain barrier and into a zone where illness has a foothold at the moment.  Sure is a tough road, I’ll tell ya.  Recovery is not for wimps.

At this point is usually where I write about my faith in the Lord Jesus Christ, sustaining me and giving me hope in the face of severe testing and trials.  If you’ve read this blog before, you probably know what I am about to write here.  You might expect me to say what a difference it makes to have Jesus in my heart or I would be filled with despair.  I usually say a lot about His sustaining grace as I truly believe that my life and these experiences are for my ultimate good and His glory.  Yes, I am softer in many ways than before this illness began.  This suffering will end someday.  I know where I will be when it ends.  Do you?  Do you know where the trials of your journey through life will lead you when your life ends?  If you do, does  your life show it?  Oh I hope so!

If you have not turned to the Lord as your Saviour, lover of your soul, forgiver of your sins (and you all have them, sorry folks, no one is perfect), and hope for all of eternity, then  what the heck are you waiting for?  How many blogs do I have to write about suffering before someone out there that isn’t saved gets it:  the meaning of life is not all about YOU, it is not all about ME.  It is all about HIM.  It ain’t about a religion either.  It is about a relationship with the God of the Bible.  Until we are given an eternal perspective that He provides and transcending joy that He grants beyond measure when we but believe in Him, all we have is our fallen human condition.  Now that is sad indeed!  Our problems will never all be solved in this life.  We will hurt.  We will lose things and people and places that we love.  Our experiences will be a mixed bag at best.  We will fall short of the peace we seek when we realize that in the end, the stuff of this life adds up to dust, to nothing at all.  We can’t take anything with us when we die.  As the wisest, richest king that ever lived (King Solomon) once said, it is all meaningless!

Yes, it is best to hang in there when there is unknown territory.  I am taking Jesus Christ with me.  My eternity began when I accepted Him into my heart as Lord.  Oh gentle reader, will you too?

P.S.  Going for a walk with my pup, a friend and her pup.  God is so good.