The Long and Winding Road

Paul McCartney wrote the famous ballad entitled The Long and Winding Road when inspired by the farmlands around his Scottish home.  He wrote it during a time of tension between band members of the Beatles and then it was published in 1970, just after the break up of the band.  I remember being very upset that they were no longer together after changing the popular music scene forever.

This is a sad song.  Tonight I understand the many sentiments expressed within the lyrics that go with this sweet melody:  melancholy to a sense of unmet longing:

When the road goes on too long before you reach your destination or you never really reach the destination you set out to find . . .

Where the twists and turns push you beyond the roadways onto the rough gravel, shaking you up quite a bit . . .

Who comes along with you sometimes wishes they were not there at all then comes around to being alright in your company after all the weary miles together . . .

What you find dashes the dreams you once had, leaving you with emptiness before the Throne of Grace where all roads eventually will arrive anyways . . .

And you shed deeper tears than you ever knew before in your pain and anguish . . .

Such is the song in my broken heart tonight.  All I can say to the God above or beyond is, “I need you now more than ever.  Please lead me back to your door . . . let me know the way.” JJ

The way it should be

We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”

I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way.  The cleaning got done at 3 o’clock Monday morning!

The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.

One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.

Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.

Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.

My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off.  He never does that.  I benefitted tremendously.

The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them.  My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.

The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home.  My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.

Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.

I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it.  Someone named “John” supposedly signed for it but it was never found.  They reimbursed me for both the check and the “stop payment” fee.

I could go on . . .

If there is anything that I have learned over these 5 years of illness is that things are never as they should be.  Well actually I knew that long before 2011 from my work with PEOPLE in healthcare.  Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes.  In the end it’s not about the individuals really.  It’s about where I am placing my trust.

A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.”  Yes indeed.  Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ.  We are to love everyone else as unto the Lord.  Only He will never forsake us, never fail us, and deliver right on time every time. 

Alrighty then.  This rant is now over.  It is just before sunrise and my nurse will be here in a few hours to administer my care.  I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts.  Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways.  I will trust that the Lord’s will will be served once again.  So before I stop making any sense at all, I will end here.

It’s probably the way it should be?  JJ

 

Just another day

Today was much of the same:

Back to bed after hitting the wall, so to speak.

Hours later I cleared

And a phone call to my beloved at work

Got me in motion to do the tasks at hand.

The story doesn’t vary much . . .

Maybe an outing to test the waters may come

Only to push me back a few days and then

I wonder if I have really come forward much at all.

But “it takes what it takes” sometimes;

The good, the bad, the ugly like an old western:

I know the patterns at least so I cry less

Resting comes more easily as does opting out

‘Cause life is more about the meaning than the doing anyhow.

The last sentence in this prose

Must point beyond my tale of woe

For when a beloved friend faced losing a family member so dear,

I realized the blessings that abound in my life even so

Even so I will go on and things will get better of this I am sure.

It doesn’t have to be today you know!

Lost in Space

I’ve been up late several nights in a row now, updating my eBook whilst blogging on home safety for my new company:  Two Step Solutions LLC.  While that may appear wildly productive the timing is just too odd for it to actually be that way for me.  I am discovering a few unusual things as I examine this new work, this current blog that you are reading, and the tragedy of illness resistant to treatment.

First, my professional writing lacks clear focus.  I add too many words and the flow is not there.  Oh the subject matter gets covered yet it is not yet up to par.  The short articles I am putting out there are intended to build credibility in my profession and an audience for the time when I want to launch my home safety product.  Perhaps I need a check-n-balance system before publishing each piece?  Yes, something like that.

I am so very dry with ideas to write about that aren’t a re-hash of the saga, the illness.  Sure, I have tried to end each blog with something reflective, insightful, Biblical, creative, humorous or otherwise useful.  It is simply getting harder to do so when the head-banging that accompanies convulsive episodes goes on FOR HOURS EVERY DAY!  You have heard about all of the test results pending.  I continuously try new treatments that make sense to me.  The outcomes continue to be disastrous.  Sure there is hope on the horizon.  But for now it is AWOL!

And if a test showed a particular course of treatment that worked, one could be encouraged as he or she ingested/applied/bathed/drank/swallowed it.  As for me, hundreds of remedies, diets, treatments, scans, procedures, therapies, adjustments later . . . I am discouraged.  Tens of thousands of dollars later . . . I am discouraged.  Moving about while beat up on 3 hours of sleep is virtually impossible yet I was called to do it today anyways.  My will has tanked.  Yes, I am broken and discouraged.

Lost in space.  There is no real sense of time here.  It comes and it goes with little of meaning to measure it by.  The foam in our bed is permanently dented in both places from my dwelling there.  Steve and I pray.  I cry a lot.  I hear that others pray out there somewhere and yet do not contact me anymore.  I am invisible for the most part.  And that’s just how it goes when you have dropped out of life for a few years.  Even blue jeans from Walmart start looking good when I can finally get out of the house on Wednesdays.  Eeeek!  I am an Eddie Bauer gal dontcha know?

I probably should not publish this.  Well stay tuned.  I am bound to bump into some kind of life eventually, eh?  JJ

laxative, medical humor, gallows humor, Lyme disease, chronic lyme, catamenial seizures, non-epileptic seizures, coping with illness, chronic illness Hope Beyone

Missing you terribly

There’s a Barbara Streisand song with lyrics that go something like this:

If we had the chance to do it all over again, tell me would we . . .

Could we . . .

The way we were.

It’s not that I would like to go back to my former self or anything like that.  I have had chronic pain for most of my life and lived with pain inside my heart for longer than that.  Many of my own mistakes were downright damaging.  Still other experiences damaged me and it would take until very recently to be free of their dark spiritual underpinnings.  The freedom I experience in today from the drama of yesterday’s trauma was worth the good and bad spent getting here.  But there is one part I am not sure what to do with . . .

I was never really physically fit and virtually always held a critical eye toward my physique even when at my ideal body weight.  All that did not seem to matter to the stream of the male persuasion that came my way, ever since I was twenty years old.  (Not sure what they were waiting for before that!)  I always rode my bike as a kid EVERYWHERE.  I did not think of it as exercise at the time, just a means to get me to the home of a friend.  Several times in college I tried running around the sidewalks of the sprawling campus.  “Library Hill” was a killer!  Maybe I should say that I ran on most paths except the 27 or so degree incline of Library Hill!  Carrying a full load of books up and downhill to class or to study late into the evening at the library should have earned me an extra degree in something or another!

What I miss most is the innocence of moving without thinking about it.  Every day lately brings stark reminders of the convulsions that have returned.  Every day brings a new version of shaking that hurts my neck the most and leaves some version of a headache behind.  Every day the hope of exercising for the enjoyment of it alludes me only because I cannot; I actually had grown to like high intensity workouts before I got sick 3 1/2 years ago.  Even with chronic pain I worked out with weights, unloaded my truck bed filled with sod/dirt/mulch, and kayaked for a couple of hours each week.  I loved being strong.

Today I miss being strong.  The trauma of seizures and convulsions have taken their toll.  The sickness after an episode usually lingers for hours, days.  I never really know for sure when the next episode is coming although the bedtime and waking-up patterns have been fairly consistent throughout this ordeal.  Somehow despite my weakness, I HAVE NOT GIVEN UP for more than a day.  Yesterday Steve and I went for a walk with our pup, Elle though most of the time the walking is through the halls of our home or a medical facility . . . or this past Saturday’s date night to the grocery store.  It’s something, eh?

O.K. so I am bummed out.  I have missed writing and did not blog so as not to bum you out, Gentle Reader, in reporting that the surgery did not stop the episodes as I had hoped.  There are tiny improvements and for these I am grateful.  I think I’ll need a little longer to recover and clear the anesthesia completely out of my system.  In desperation I went on a water fast for 24-hours last week.  It was awful!  Amazingly I did not have seizures until the 24th hour!  I believe the Lord gave me the wisdom through it all to start a ketogenic diet so new research and a new direction began the next day.

A ketogenic diet is a high fat diet where the fat becomes fuel for the body instead of carbohydrates.  The version for seizure control (generally used for children) is unlike the keto diet for weight loss in that fats are consumed more than protein “macros.”  Grams of carbs are the tiniest portion of the three. The increase in ketones are measured in either the urine or blood and thought to be the mechanism that brings some level of seizure control in 25-50 percent of children.  In children the diet begins after a 24-48 hour fast in a hospital.  Hmmm.  My great Physician led me here after my own fasting experience too.  So with the MyFitnessPal nutrition app in-hand, I am moving towards the ideal ratios of fats, proteins, and carbohydrates.  Good news:  that means lots of bacon!  And at least I am off the pureed diet now!

The way we were.  Can it be that it was all so simple then?  Or has time re-written every line?  If we had the chance to do it all over again, tell me, would we?  Could we?

Perhaps the real longing requires me to not look back at all.  Then what is it Lord?  Fill this emptiness, please.  Ease this hurting.  Thank you for new tracks to run on, so to speak.  I still need you desperately to guide me.  I realize that I may not be alone in this desire you know.  Please comfort the Gentle Readers out there who need you too.  JJ

EMU Halle Library with another runner testing his strength!

EMU Halle Library with another runner testing his strength!