I got to Walmart today

Days where I just exist

Give way to tears

More often than not

Everyday now.

Waiting no longer suits me

Although it is my garment

Worn through hopes dashed

Threadbare to no end.

I study like a school girl

Not sure where the letters lead

Thinking this is “it”

And it is not.

Surely it is darkest

Before the break of day

That is my hope I guess

And my Lord too.

So little do I do

As the grass grows tall

Alone too much too

At least I got to Walmart today!

Walmart, shower, Target, Meme, pajamas, old man, glasses

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 Dog Behind the Curtain

Dimly lit, like the medical equipment stored all around me, I sat in the vinyl seat of that cold wheelchair.  My head was unsupported as I writhed this way and that, right leg then left leg shaking uncontrollably.  Breathing was irregular and challenging as I pushed the air out of my chest to start the cycle again then again, gasping every few intervals.  Just my legs were visible from behind the curtain drawn along my right side and lit from light in the hallway.  A passerby might see my exposed knee bouncing up and down from underneath my torn jeans or maybe not.  Who would expect to see a middle-aged woman seizing just beyond a dark veil anyways?

Most likely a dog in a kennel could be positioned in such a fashion!  Perhaps to put her to sleep, to stow her away out of sight, to deal with her later?  Only a mean caregiver would treat an animal in such a way.  Or perhaps a nurse in the outpatient lab of a local hospital?  The latter was my lot this afternoon.  And hours later I grieved the insensitive treatment that I had received (rather had not received).  She never even responded earlier to my light chatter or attempts at humor as she withdrew 10 vials of blood from my scarred veins.  I had to ask her with strained breaths not to wheel me into the waiting room where others would gawk at my strife.  Holy cow.  Aren’t you paid to care for your patients?  You don’t have to care about me personally but HAVE YOU NO HEART?

Most of them have seen me react many times before to medical procedures that trigger anywhere from a couple of moments of shaking to over 2 hours of convulsive episodes and long after the procedure in their outpatient clinic was completed for infusions, injections, blood draws, and port flushes.  Several times other nurses have had to find coverage for their stations or stay late to take me to the bathroom in a wheelchair while my body writhed, gasping for air like a child with cerebral palsy.  Eventually the episode would resolve minutes after voiding in the toilet.

Once I was in the clinic having an infusion of fluids on my birthday and ended up spending the entire evening in the Emergency Room when the seizure attacks would not stop.  That was 2 1/2 years ago.  Twice they have had to call my husband to come and get me or bring me a medication to try and make it stop.  Dozens of times they have just allowed me to sit in a treatment room recovering, long after they had gone home for the night.  A p.m. shift nurse would come in and check on me every 30-60 minutes as I stared at the walls or the mobile T.V. screen in front of my face.  When I could walk again I would move to the lobby for another interval of time until I was stable enough to go home.  No one even noticed I was there.  By the way, they always play my fav HGTV in the Surgical Waiting lobby dontcha know?

This time the aftermath felt like being banished to the broom closet by an abusive grandmother.  I could not reach the call light and no effort was made to make it possible.  I heard the same phlebotomy nurse chatting lightly with the next patient after me who was there for an EEG.  And again with the lady having a blood test.  I guess they were less “complicated” than me.  They probably didn’t remind said nurse of her own seizure episode many years ago that had disrupted her life for 6 months.  (She had told me about that earlier this year while I was sitting in the clinic recovering from an episode triggered by the pain of the needle stick and extraction.)  Yeah maybe that’s it.  Or did she just want to get back to the break area this afternoon and not be bothered by me anymore?

These episodes and experiences create additional trauma for the person enduring a serious, long-term illness.  You come face-to-face with the reality that people just don’t care as much as they should or get tired of caring, even as professional care-givers.  Take more of their time, their effort, their expertise, their personal comfort than they are willing to give and you will struggle making up the difference.  You are pretty close to being on your own.  It is not your fault yet it is your fault.  Suck it up and figure out a way to get home and not kick the dog when you get there.  Almost 3 hours later I felt as beaten down as I could possibly be as I walked out of that place.

A warm fuzzy friend with big brown eyes and wagging tail greeted me at the door when I got home.  She loves me.  I love our Elle.  So at least for me, I will be caring for our dog in a well-lit room with all the comfort measures she needs within a reasonable time of her letting me know that need.  She may not even need to ask me.  I know what she needs.  I care about her and know how to take care of her.  She will not be shunned to a dark corner behind a curtain as others are walking by.  At least unless she is barking wildly at the UPS or FedEx driver, that is.  Into the laundry room alone you will go . . . but just for a moment or two.  She would bite a chunk out of them if I didn’t!

Well Elle, I must say that I know how you feel. Grrrrrrrrrrrrrr.  JJ

woman with dog, German shepherd, travelling, pet, Nissan Frontier, trip, jump seat

So you want to go camping do ya?

Camping is not for the faint of heart, even in the “posh” conditions of a travel trailer! Having a trusty companion or two and the right tools can make the difference between success and failure.  For me that would be the guard dog, handy husband, jugs of water, and very long extension cord.  Gotter done!

Camplite, husband, kayak, Scorpius, rack, roof, outrigger, canoe, man, towing, camper, travel, trailer, home, Nissan, Frontier, camping

I am grateful for our Camplite (aka Tin Can Ranch) that allows me to go places with my hubby and stay in a mobile “clean room,” away from the hazards of hotels and limited choices of restaurant menus.  Preparing for these trips is an incredible amount of work all by itself:  just about the same amount of tasks need to be completed for a week-long vacation as an over-nighter.  I have a sense that we won’t be doing the latter again anytime soon!  Regardless, I rallied the strength and off we went with great expectations to the Illinois Beach State Park north of Chicago, Illinois.  I was to attend the day-long Designs for Health:  A Prescription for Wellness seminar at the beautiful Chicago Botanical Gardens and Steve was to tackle the surf along Lake Michigan.  Later we planned to meet up with some friends for dinner on the north side of the city before heading south around the city and back to NE Indiana into the wee hours of the morning.  Whilst the latter plans were complicated by severe rain and traffic issues for all parties, it turned out to be an “easier” part of our itinerary!

Our wacky adventures began soon after we pulled into the campground along the shores of Lake Michigan.  Up first:  hooking up the electrical.  Not!  For the next several hours we battled a worn breaker system that kept tripping no matter what we did to avert the issue.  Was it the breakers in the trailer that were overloaded?  The eroded contacts in the refrigerator switch plate that requires a few minutes of babysitting to turn on? Figuring this out required much problem-solving with wifey-poo dressed in early Spring/Winter garb, very weary from travelling and following orders from the friendly but not-so-helpful front office staff.  To sort this out, we ran our extension cord to a few adjacent sites to no avail.  Very likely it was the campsite breakers that were worn and not our camper since everything had worked fine at home the day before.  Too bad the real on-site expert had the day off!

Finally my husband figured out two work-a-rounds:  1)  hooking up our battery charger to the battery to run the water pump and 2) running our 100-foot extension cord to a 3rd campsite and through the kitchen area window to run the electric heater.  In the morning I disconnected the heater and attached it to my blow dryer to make some order of the bed head that came with the morning.  What about just taking a shower you ask? Well don’t!  That didn’t happen . . . for me anyways.  The campground did not have water or sewer hook-ups so we had filled our modest, 30-gallon water tank at home thinking it would be enough for bathroom needs with quick “Navy-style” showers.  We were wrong. Steve did get a shower . . . then a paddle in Lake Michigan . . . then another shower in the only open bathroom facilities in the campground.  I made the most of things and had a quick cooooold sponge bath before heading out to the seminar!  Oh well.  I was definitely AWAKE for the day of lectures to follow!

A few other tidbits further enhanced our experience such as Steve gashing his lip on the rusted breaker box in the midst of trying to figure out things!  So glad for our first aid supplies!  Then there was the brand new hot water pot that I had plugged in through the cord dangling in kitchen window to make some hot tea ended up not working; I used an electric frying pan instead!  Additionally I took every remedy that I had with me to ward off noxious symptoms from ongoing illness and to consume before-and-during the seminar (with copious amounts of food-n-bacon, of course).  And guess what?  The seminar was incredible!  Steve had a great time paddling our outrigger canoe 7 miles along the lake shore and the pup got in a few long walks at the beach.  Cool beans.

woman, seminar, Chicago Botanical Gardens, flowers, planter, Designs for Healing, sitting

Forrest Gump logic applies very well to almost all of our camping experiences these past 3 years:  you never know what you are going to get!  This trip was no different.  We are now home and pooped.  Massive loads of laundry and cleaning are now underway to decontaminate everything for our next adventure having something to do with trailer demolishen derby races or something.  With our luck, let’s just hope we don’t end up on the figure-8 track.  Should be fun.  Or maybe not.  I’ll be sure to letcha know.  Eeeeek!

JJ

Into the clearing as the storm wanes

Psalm, Psalm 107:29, waves, Bible, storm, Jesus, calms the sea, hope, trials

The coming day after the darkest of nights

May be the one that redeems, the one where at last there is light.

Never a guarantee accompanies each sunrise

That moments later I will live and breathe without compromise.

The seizing of my being, the cries of despair

Have gone on too long little Julie:  even my bigger self can no longer repair,

The damage, the trauma, yes that goes beyond me

My Lord holds those tears that fill the seas of this earthly iniquity.

But one day I will be whole as He promised, oh yes He did

Joy replacing all the sorrow and where life will be just right, just as He said.

If next week brings some answers then so be it too

I do have wee bits of hope for some sleep now leaves me more rested, anew.

My brain can handle more of the stuff of life these days

With the exception of the medical provider’s drama where I have to focus the way.

I shall trust in my Savior whether or not we achieve the goal

Even if the storm inside wanes incomplete, in my spirit I shall always remain whole.

For my Jesus made me just as I am:  Just Julie, your friend

And you too Gentle Reader:  in His image welcome at His table now and til the end.

Won’t you dine in His presence with me unto glory eternally(?)

If we but believe the heavenly realms shall always be in the clearing for us to see!

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Yes, Ima gonna hang in there a little longer . . . You do too, k?  JJ

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