I learned it from Charlotte

She was wearing an oxygen cannula 24/7 and needed to take a break to rest after walking from one end of her house to the other.  Having battled breast cancer years ago, she had come into the late stages of another bout of cancer that would take her life a year later.  She was no longer able to leave her home except for medical appointments and did so with a supremely taxing effort.  Too weak to perform all but the most basic of daily living chores, she still had an amazing ministry that reached across the country . . .

Grief Share, friendship, mentoring, older women, younger woman, grief, loss, grieving, fellowship, Charlotte
From left: Julie, Miriam, Charlotte, Mary, and LuAnn from a Grief Share Ministry in 2007

Charlotte prayed for persons that she had found in an online “care” ministry.  These patients had opened up a personal webpage usually when in the hospital to facilitate communicating updates on their medical status to loved ones.  Charlotte searched the database for individuals that spoke to her heart then enlisted prayer warriors she knew via email and social media to pray for them too.  I was in awe of her outreach!  Exhausted from chemotherapy, radiation, or just taking a breath was no deterrent for a woman with a heart bigger than anyone’s I had known.  “I have the time,” is all she would say about it.  And time was her greatest gift as she spent it in the service of others, lifting them before our heavenly Father’s throne of grace.

So when I have been bedridden over the past few years, I have taken on my own version of Charlotte’s prayer ministry.  I pray for everyone I can think of until I can get out of bed again.  I was often amazed that once I got started, the Lord would bring so many names and faces to mind:  persons I had met online, an individual named through a prayer chain, or maybe someone I saw in public when able to leave our own home to go to medical appointments.  “I had the time,” so humbly to pray would be the best use of it.  It has been amazing to me when these instances occur . . .

Today a bunch of folks came to mind during 2 hours of continuous seizure attacks after injections of antibiotics at my doctor’s office did not go so well.  I lain on a hard treatment table in the dark to shield my eyes from the bright lights, hoping that the hell would not go on as long as it had during treatments earlier in the week.  My neck throbbed from the violent shaking, thrashing, odd posturing, wailing, repetitive pulling forward of my flexed torso, and general torture of it all.  (Unfortunately the facet block injection in my neck 3 weeks ago had already worn off!)  Sure, the nurses checked on me every so often; they had seen these episodes many, many times before and knew the score.  There was an agreement however, that if the convulsions persisted they would call an ambulance to take me to the emergency room of the hospital adjacent to their office building.  I doubted if that would do any good.  Would she be making the call the next time she came in the room?  The next time after that?  The total duration had already exceeded 90 minutes which was well beyond our agreed upon period.  “Is there anything I can do for you?” she would ask in plain English.  Sigh.  Not really.

Then she came back again and I squeaked out to yes, please ask the doctor if he could do a chiropractic adjustment on my neck.  It might help stop the wretchedness as it had in another appointment in the past.  Finally another nurse came back with the good news:  the Doctor would see me!  I began to cry . . .  then praise the Lord . . . then pray some more.  Soon my time thrashing about whilst laying flat on my back and mighty sore gluteus media from 6 injections this past week would be over.  I had so much to do later this evening before a surgical procedure tomorrow.  I had better get my time with the Lord in now not knowing how the rest of the day would fare.

Things got better after more gut-wrenching yelps, yells, screams, bursts of hot tears, yada, yada with the chiropractic adjustments and I was finally able to leave the building under my own power about 20 minutes later.  Whoa!  Shell-shocked I had made my way to the bathroom, put on my coat, and gathered my things to leave as if moving slow-motion in a black and white flick from the 1950’s.  But the evening was just getting started so miraculously the pace revved up a bit from there.

Within the hour I would be tossing all precaution to the wind and digging in the garden with our pup chewing a bone nearby!  Whaaat?  Hey, I figured that I’d get the borders of 2 flower beds tidied up knowing that I would likely be on a lifting restriction after placement of a power port in my chest wall early the next morning.  SO I DUG, DUG, DUG LIKE THERE WAS A TREASURE OF GOLD HIDDEN IN THERE SOMEWHERE!!!  Even the darkness and the drizzling rain did not stop me from doing what I love, doing the most that I could possibly do in some sort of a cathartic shedding of my personal hell on the way to and earthly Garden of Eden.  Well, sort of!

Maybe Charlotte would smile at how things turned out for me this evening.  It’s been about 7 years since her passing.  She had an impact on my life for sure.  If she were still around I would give her a call and listen some more to her wisdom that helped transform my life at another tumultuous time.  Well I guess that is happening again dear friend.

Thank you Jesus for Charlotte’s legacy.  Perhaps someday together we will tend to the sumptuous riches in the gardens of our Savior’s wondrous dwellings that You have prepared for us to bask in Your glory one day and forever.

There is so much to look forward to Gentle Reader.  I hope to see you there too.  :JJ

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

When I look up

From my truck I see kayak racks:  looks like it’s time for a road trip South.

From our flagstone patio I see the bluest hue of sky that comes with the chill of this season.

From my jewelry studio comes the reflections of many table lamps bouncing off the walls as I strain to create, to sew, to knot into the night.

From our bed I ponder this life as the hours pass in the dark, in the light since the popcorn ceiling never made any sense when I tried to connect the dots up there anyways.

From lying on the kitchen floor I cover my eyes and cradle my head to minimize the brightness of the nickel light fixture, the damage from the internal unrest tossing me about, and the discomfort from not making it to the bed in time.  The pup sniffing my hair is sweet indeed.

And when I look up from my heart to my mind’s eye I see my Lord who whispers His words of comfort that this strife too shall pass.  He makes all things new don’t you know and this happens whether we can see it, feel it, find it in this fleeting moment of a day.  This is where I must persevere as I never cease to look beyond today to a better tomorrow.  It must come.  It will come!  Oh yes, it does.

Psalm 121 (NIV)

A song of ascents.

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.

He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.

The Lord watches over you—
    the Lord is your shade at your right hand;
the sun will not harm you by day,
    nor the moon by night.

The Lord will keep you from all harm—
    he will watch over your life;
the Lord will watch over your coming and going
    both now and forevermore.

puffy clouds

 

Just ‘Cause You’re Sick Doesn’t Mean You Can’t…..

Some great insights from a fellow sojourner who is near to the side of recovery from Lyme disease. Perhaps I can add making jewelry? :J

My Color Is Lyme

Image

Yes you are in bed most of the time. Yes you feel like that possum that got hit by the truck. Yes you are kind of stuck and down in the dumps. You can’t do most of the things you want to do, so it is easy to get depressed, feel worthless and a burden on society. We’ve all been there, no matter what point in our illness we are in right now.

So since it is so easy to focus on the “can’ts” (which lead to feeling worthless), here are some “can’s” you can do right from your bed. And please don’t put these ideas down as cheesy, maybe some are but it’s the little things that sometimes make the day brighter.

 

Image1. Write Thank You Cards “just because”. Are there people in your life that you love and appreciate? How good would it feel to surprise them…

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