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

Just sitting at the table

 

My beloved opened the door

And my evening suddenly brightened,

Knowing he would be close with a listening ear

Makes handling the “nasty” less bad and more good afterwards.

I just don’t get used to

The evening ritual of torment

When my world goes dim from sickness

No matter the resting gone before, the mini successes (or so I thought?).

sitting, chair, upset, anguish, grieving, prison, torment, grief, hurt, person, woman, man

I was just sitting at the table

When my eyes pulled closed and shook

My head and neck followed next then I knew

There were just seconds to get lying down before all hell broke loose.

So I did run to the bedroom

Head turned to soften impact bedside

Eventually pulling the comforter over my broken frame

As the sputtering gave way to shouts of terror, gasping for air, legs drawn up too.

In waves the torment continued

Just when I thought I might cry for help

No words came when Steve came to my rescue

Trying to figure out how to get a remedy inside me as I twisted before his eyes.

Tis trauma for us both

When a Monday night isn’t anyway alright

For I will never accept that fifteen hundred of these nights

Are the way it should be forever, oh Lord deliver me please!

Try again the new this or that

Until we or the Docs get it right or even better

Til that night we will sit talking about our day eye to eye

Then ready ourselves for bed with a tender embrace as it should be.

Oh I know others have their trials

And I grieve for theirs with ours in there too

Let me know your need for prayers, Gentle Reader

Allow me to make good use of this time before the altar:  His throne of grace.

My Jesus cares for me, for you

He loves us and lives for our coming to Him

No matter the reason TRUST:  all will be new one day

Until then pray for me too, k?  I am tired from this ungentle cross at my tableside.

JJ

 

Vampire Diaries 2

hebrews, Hebrews 13:5, abandonment, promises of God, alone, loneliness, scripture, depression, sorrow, loss, illness, sickness, hope

Tears going up and down a lot this day

On the roller coaster of emotion I find myself on:

Help cometh x2 but test results won’t satisfy

As here I sit with my neck aching all through my brain.

I tried.  I really tried to figure it out and failed.

The symptoms that remain still taunt my peace

Leaving scars, leaving woes, leaving loss behind the hope

And yet my breath prevails so in and out I will also go today

To match the pull of the vampire’s teeth left in my chest wall.

The infusions continue instead of a long-desired break

The bank will love us less, the medical folk perhaps more

Whilst someone’s Mercedes payment will be made

And my saga continues on Big Box Store hamburger.

Hope always seems just one more day out there somewheres

Leaving me here beat up from this morning’s episode of torment

A snuggle with my husband got transformed into caregiving

And more hours were lost in the aftermath once again.

At least my dog seems to understand as she nudges her nose at the leash.  “Can’t we go now?” her soft brown eyes contend.

Relief might come in the mail soon

Or maybe not; it’s hard to tell

So I’ll keep calling on my Jesus for now

His calling card never leaves and never fails any of us anyways. JJ

 

 

A Plausible Case

As you may have read in the About Julie page of this blogsite, I treated for Chronic Lyme Disease early in the four years that I have been battling serious illness.  I had not recovered my health four months after a bout with viral hepatitis and our Family Practice Physician convinced me and Steve that latent Lyme disease was keeping me sick.  Then the story changed a few times . . .

Treatment for Lyme disease, Candida, mold exposure, mercury toxicity, gut parasites, and infected root-canaled teeth has still left me with the following symptoms four years later:

  • Hours of daily convulsive episodes, every single day
  • Headaches
  • Painful shoulders, forearms, hips, neck, jaw, and more
  • Ringing in my ears
  • Multiple severe chemical, mold, and sound/light sensitivities
  • Significant nutritional and hormonal deficiencies
  • Fatigue
  • Episodic cognitive and emotional setbacks
  • Periodic night terrors, nightmares, waking terrors
  • Weakness and deconditioning
  • Air hunger and chest compression symptoms
  • Neuropathies
  • Severely disrupted sleep/wake cycle
  • Food sensitivities despite a restricted diet
  • Gut dysbiosis
  • Inability to consistently perform activities of daily living or work
  • Social isolation
  • Intolerance to treatment

So in other words, my life is kinda hellish a lot of the time!  Today was no exception.  Then right in the middle of the trauma there were tender encounters with the sweetest man on the face of the earth:  my Stevers.  We talked in between seizure attack episodes, he provided care when I could not move, and we made the most of a low-key day.  It was the “same story, different day” around here.  And something else happened too:  I may have discovered another piece of this wretched illness mystery:  Latent Lyme Disease can affect the gut which in turn can contribute to neurological complications much like the ones that have eluded all of our attempts at recovery.

No, it’s not systemic Candida as I suspected when I wrote my last Treatment Update.  It’s called “Bell’s Palsy of the Gut,” a term coined by Lyme Literate Medical Doctor (LLMD) Virginia T. Sherr.  “Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians,” states Dr. Sherr in the April 2006 issue of Practical Gastroenterology (p. 74).  There are tests that can be performed to determine the presence of Borrelia burgdorferi along with other microbial pathogens  transferred in tick saliva after a bite.  In two weeks I will have a diagnostic procedure in which these tests could also be performed.  Whoa Lord.  Is that why I felt led to add an anti-microbial to my anemic treatment plan?

God is good.  All the time.  God is good.  Today I felt led to add back a probiotic that I actually was able to tolerate this time.  The new information about Lyme disease may explain the increasing gut inflammation this past year and my supremely negative response to a trial of a far-infrared light treatment to my abdomen.  Or to any abdominal exam.  Or to physical therapy to the hip flexors in the lower part of the abdominal wall.  Or to certain foods.  At any rate, a new door has opened and there are new possibilities for getting well.  Perhaps it is time to re-visit the diagnosis of Lyme disease.

Stay tuned.  This exquisitely wild roller coaster ride of recovery from serious illness is about to reach a new station.  In the meantime, please pass a spoon and 1/2 of a carton of Siggis plain, grass-fed, organic and Icelandic yogurt.  We’re going to get this thing right or keep screaming all the way to the bottom of the next hill until we do!  (I told you that I worked in an amusement park one summer didn’t I?  Yeah, Cedar Point is really cool!)

Cedar Point gatekeeper_wallpaper

 

Who will carry me?

It’s easy to bemoan the slide of morality in the United States recently escalated by the legalization of gay marriage.  What is natural to the human body has now been publicly adulterated by the unnatural.  The institution of marriage, which was created by God, has been changed by a few willful and unlawful men who did not even create the institution of marriage.  Alas another door has opened in our lives that will ultimately hurt everyone when his or her rainbow-colored eyes finally open to see it.  But most of us will never see the damage coming until it is too late . . .

When the truth, the pain of what we have done to ourselves is revealed, we will mourn.  Others will mourn the horror of what our complacency, our tolerance has produced.  Further, things will go horribly wrong even for those who believe that free living is right:  things that they could only imagine in a sex-slave murder mystery will come into their reality and hurt them too.  And those of us who have attempted to shine a light or sound an alarm on the moral decline will realize that what we have tried to do could never be enough to change unbridled evil.  Eventually, we all will grieve but for very different reasons.

So who will carry all of our tears?  Who will carry your grief and mine?  “Who” indeed.

boy and wheelbarrow, trees down, storm damage, carry, wheelbarrow, burdens, Lord carried me, Lord carried me, Footprints in the Sand

Chad Ryan | The Journal Gazette
Five-year old Braxton Davis joined the work crew 6.27.15 at Opechee Way and Nokomis Road, using his toy wheel barrow to remove leaves after a large tree fell in the front yard of his house at the Indian Village intersection.

The cute picture above denotes how we have trivialized the important issues of our day.  The picture above denotes how we have traded our core values and beliefs for a picture of life that feels good in the moment.  We have minimized the significance, the impact that our actions, our public statements, our private thoughts, the work of our hands can truly have in the larger picture of life.  These are not a small issues.  Eventually the magnitude and truth of who we are is always revealed.  Eventually a tiny wheel barrow carried by a child that is supposed to help us feel good about hundreds of thousands of dollars of storm damage will be crushed by the tsunami of horror headed our way.  Our world will never be the same for you and me beginning the events of June 26, 2015.

We cannot fix this.  No one individual, you or me, can carry us through to a better future. No one:  no President, no preacher, no crafty writer, no partner, no one can fix what is coming for us or carry our wheelbarrow of tears.  We are alone to face the consequences of these actions.  If we want the pain, the grief to stop then we will have to take our sorrow somewhere many of us have never gone before . . .  But where?

We understand the dilemma inside our own home too, in another way.  Last night was hell for me and Steve.  In the middle of 3 1/2 hours of  continuous convulsive episodes, I struggled to squeak out a request for him to carry me to the bathroom.  I was also in the middle of a 24-hour urine hormone test procedure so imagine my shame in trying to figure out what to do when my hands or legs were not working right.  Neurological collapse had settled in.  Gratefully as soon as he got me upright and helped me with a sip of water, I could use my hands well enough to position the urine cup myself when sitting on the toilet.  I was able to get the sample and dump it into the collection receptacle resting in the bottom of the tub next to the toilet.  Steve then helped me back to bed just in time for the next round of head-banging, wailing, tears, and terrible pain.  And so it went for the sixth night in a row.

I am grateful that when Steve is home, he is very capable of carrying me.  He has done so a hundred times.  He has held me through the ugliest of moments, fed me, clothed me, prayed, and artfully let his deft gallows humor fly at just the right moment in time when we both needed it!  Then there were the thousands of times when he was not there and I still needed help.  I needed to get to the bathroom but my legs would not move.  My throat was parched from cries of sheer angst, hyperventilation, sweats episodes, and chronic dehydration.  I wondered if my next breath would arrive or not.  My tummy growled for hours and I could do nothing to satisfy the hunger.  My brain became too numb to figure out what was in my ability to do or not anyways.  Oh the neck pain from the seizing!  Fearful thoughts, not my own, pushed into my mind by force of some electrical misfiring that goes with seizure activity.  And I cried deeply, feeling alone.

In those moments, Jesus Christ carries me (John 16:32).  I am not alone!  Jesus Christ carries and equips Steve over and over again for the tasks at hand in our marriage (1 Peter 4:10).  Jesus Christ will also carry those who do not know him whenever, wherever they finally reach out for help (Psalm 10:17).  Our God, Jesus Christ, is worthy of our reach since He created us out of love:  shown to all as He grieved bloody tears for our sorrow, our pain (John 11:35) that we endure in this life.  He existed before the time, space, and material that characterizes our lives (John 1:1-4) and is the very reason that we are here.  He loves us more than we can ever imagine and is always here for us, no matter what is going on around us (or within us!) (Matthew 28:20).

Further, we can never say that what freedoms we want, doubts we have about our lives, or the philosophy in our own minds will have anything to do with Who God is.  God, the triune Holy Spirit, Father, and Son (Jesus Christ), is separate from mankind and is not subject to the constraints of this earthly life.  Our ideas simply cannot match up. We will never fully understand Who He is with our finite minds so rejecting Him won’t get you anywhere worthwhile.  The answer to our questions, our unmet needs in life is belief.

Because we are finite, we must place our belief in that which is infinite:  true yesterday, today and tomorrow.  The only entity that is infinite is God.  He never changes.  He is perfect, all-knowing and we are not.  We can reach out to Him in with our tears, know that He cares (Psalm 139:17-18), know that He has our back (Jeremiah 29:11), and live on with hope for tomorrow amidst our trials, our heartache.  It follows then that our victory over the heartaches of this life is in Christ alone:  the Son of God.  Jesus Christ, manifest in His Word (the Bible), reflected in His creation, and felt through the longing inside our hearts, is not bound by our limited view of the world.  Jesus transcended this life when He died on the cross and rose from the dead.  Jesus Christ will “carry” each of us through the mysteries of life to a better place when we place our trust in Him (John 3:16).

Our Lord Jesus Christ made the difference for me and Steve last night and a hundred other horrible nights.  Jesus Christ will make the difference for you too in everything, Gentle Reader, whether you choose to believe in Him now or at another time.  But why wait?  Why not enjoy His transcendent peace, love, joy, hope, and more right now?

For the believer in Jesus Christ, it doesn’t really matter for our future, what is going on around us in the world right now.  We will live infinitely longer in heaven with God than the time it takes to complain about a Supreme Court decision.  Join me in doing what we can to love people, all people.  Reaffirm in our minds that we ultimately place our trust in only one place:  the Person of Jesus Christ.  He is the One Who matters most.  He is the One who will carry us from here into our blessed eternity with Him.  And that is a celebration worth waiting talking about!

But, dear friends, remember what the apostles of our Lord Jesus Christ foretold. 18 They said to you, “In the last times there will be scoffers who will follow their own ungodly desires.” 19 These are the people who divide you, who follow mere natural instincts and do not have the Spirit.

20 But you, dear friends, by building yourselves up in your most holy faith and praying in the Holy Spirit, 21 keep yourselves in God’s love as you wait for the mercy of our Lord Jesus Christ to bring you to eternal life.  (Jude 17-21)

The Lord is the one who carries me for sure.  What do you say we go together?

With love, JJ