Dealing with the trauma of illness

Not that I have a total handle on this topic or anything but hey, I have learned a few things worth sharing . . .

Every day for over 5 years I have suffered waking seizure attack episodes of varying duration and intensity.  For over a year (ending last year) they averaged 2 to 5 hours per day!  At least once per month they would spike up to 12 hours on and off in a single day, sometimes requiring an Emergency Room intervention.  I have been to 3 different emergency rooms a total of FIFTEEN TIMES including once by ambulance.  After nearly a year of IV antibiotics for chronic Lyme disease these episodes are generally less than an hour per day now with some positive changes in triggers and patterning.  Significant testing and other treatments, research, and patient “networking” remain my primary occupation.  I am grateful for the improvements that have come including overall less pain from the repeated physical trauma of “head-banging” and wretched writhing movements (thanks to  periodic intervals of physical therapy and periodic chiropractic adjustments).

The journey is hell at times.  At my worst times I have questioned if I could endure this level of suffering one more moment.  My breathing has stopped numerous times and there has been one significant near-death experience with visions of “white lights.”  I have had to pray many times for the Lord to give me the strength to get to the bathroom when alone during hours of convulsive episodes.  Every type of healthcare provider I have ever seen and most close friends and family has witnessed them.  My husband is a saint, having cared for me often late into the night then getting up and going to work the next day.   A total of probably a hundred times he has had to carry me across our home when I could not walk, feed me, take me to the bathroom, assist me with bathing, take me to the emergency room, run urgent errands, and the like as my primary caregiver.  Probably a thousand times he has volunteered to bring me some type of “rescue remedy” to attempt to get the seizures to stop (generally at night or upon waking in the morning).  He never complains.  He is my hero for sure.

In other blogs you will read about all the avenues we have pursued to try and get me well:  chronic Lyme disease, heavy metal detox, mold remediation, obscure infections, dietary restrictions, neurology workups, dental issues, nutritional deficiencies, epigenetic testing and coaching, electrosmog, gut issues, yada, yada, yada.  I spend hours per week researching, managing my healthcare, dealing with extreme mold avoidance and other preventative strategies, and accessing my support system online or by phone.  Church worship is also online to minimize triggers from environmental stimuli, however this strategy also increases my social isolation.  Trips away from home are generally focused on essentials during my best times of day and occasionally with transportation help from a couple of sweet gals from church.  I wear a mask in their cars and sit on a towel covering the passenger seat but we find a way to connect anyways during those trips when help is needed about once per month.

As you can see, there is much abby-normal stuff during my days.  Social isolation and the ongoing seizure attacks are my biggest heartaches.  The latter causes both physical and emotional trauma when they are severe which still happens two of the seven days per week still marked by ongoing episodes.  The two this week included:  1) a violent reaction to an ingredient in an new injected medication that I need to treat osteoporosis and 2) a new strategy to treat severe Small Intestinal Bacterial Overgrowth.  Both of these conditions very likely are complications of ongoing illness as they were not present before I got sick on October 11, 2011.  Each new diagnosis will bring its own special kind of discouragement if I don’t keep my worries in check with my hopes placed in the redemption promised with belief in Jesus Christ.  Already I mentioned a few of the strategies I use for managing the social isolation.  What about the trauma?

I manage the trauma of severe, ongoing illness by trusting in my Lord and Savior, Jesus Christ.  This used to mean that I trusted in the promise of Jeremiah 29:11:

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.  (NIV)

Surely if there is a purpose for all of this suffering then it won’t be wasted.  It becomes part of a greater plan, encouraging me enough to endure even the worst of the pain and anguish I am enduring.  This viewpoint has helped me cope during the first 5 1/2 years of this illness.  It carried me through the decisions to spend the rest of some savings with the hope of a cure and to endure the side effects of such treatments.  I can look back and point to the skills and information that I have learned, write about them here, take to heart the remarks of others encouraged by my stories, and note the Divine sequencing of many things that have happened along the way.  The Lord has provided so much for my care that gratitude has replaced temporary doubts, frustration, discouragement, intractable pain, and so on.  Seeing some meaning in what I am going through or shortly thereafter, gave both me and Steve enough hope to keep moving forward no matter what the “cost” may be.  But what about when the process stopped?  The money ran out.  I am not recovered.  There was no where else to go this past Winter when I got to the bitter end of my proverbial rope with worse symptoms than I could ever imagine!  Yeah, that was the onset of facial shingles in December.  More hell and a hospitalization too.

That’s when I needed to learn to trust whether there would be a purpose I could see or if there would be no purpose or direction at all.  I discovered that complete trust in our Heavenly Father builds faith and the strength to carry each of us through ANYTHING and EVERYTHING.  It’s a supernatural gift bestowed upon believers in God Almighty who trust Him.  For those of us chosen to travel a path of excruciating suffering, we must find our way to this level of trust in the Lord our God.  Our faith will grow as a result and both will carry us through the dark times no matter how dark they become.  Did I tell you that frightful demonic attacks have come during the worst of the waking seizures?  Yes.  It’s more terrifying than I can describe but may try to do so another time.   At those times only the spiritual armor of God (see Ephesians 6:10-18) and this reassurance spoken by the apostle Paul will quiet my spirit.  God is greater than any threat in this world, in my world, period.

2 Timothy 1:7  (NKJV)

For God has not given us a spirit of fear, but of power and of love and of a sound mind.

Because what is my worst fear anyways?  Dying?  For me it is probably not dying but suffering even more with dying as the end result.  So finding peace when dealing with the trauma of physical and mental suffering must be accompanied by the reminders of Who overcame death, in Whom have I placed my trust, and in Whom will I find victory over my fears.  To extinguish the fearful thoughts I must again turn to the “sword of the Spirit” as described in Ephesians 6:17 as the word of God.  In the Book of John we find Jesus comforting a grieving friend when:

John 11:25-26 (NIV)

25 Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; 26 and whoever lives by believing in me will never die. Do you believe this?”

Not only did Jesus overcome the grave when He rose from the dead on Resurrection Sunday (Easter), He gave those who believe in Him the promise of a glorious eternal life in His presence where there will be no more weeping, no more sorrows.  There will be rewards for the faithful too.  There will be perfect peace, love, and joy forever.

the cross

I may never see healing this side of heaven.  I may see healing this side of heaven.  I really have no idea which one it will be or when it will happen.  In the meantime I will simply trust in Jesus Christ who knows my name and sees my suffering (Psalm139) and ordains it somehow for good.  He will be here with me always.  I ain’t dead yet so I trust that He will add His grace and power to see me through to my last breath.  Until then Gentle Reader I ask you,

Do you believe this too?

Some Passion for You

Passion stems from the Latin work pati, meaning “to suffer.” The stem pass comes from the word passive meaning “capable of suffering.” Pass was coined in the early 16th century to denote “the suffering of Christ on the cross.” English also acquired the word through the Old French word passion meaning “strength of feeling.” This has been transferred in our modern times to denote sexual attraction and anger.  (From this website.)

I was watching an interview of actor Jim Caviezel who portrayed Jesus Christ in Mel Gibson’s movie Passion of the Christ.  Jim has a powerful testimony of the physical trauma he endured during the making of that film.  The movie came out in 2004 when I was in the beginning stages of divorce after my former spouse left me.  I was devastated.  Also within that year my grandmother and youngest brother had died, I lost my home, I had to change churches to begin the healing process (distancing me from my support system), my mother was diagnosed with lung cancer and underwent a serious surgery out of State, I lost my job, and had to store my things in 5 places while I began the first of what would become 5 moves of residence.  One of these was after a condo fire which displaced me into a temporary apartment with only the clothes on my back for a time.  Talk about suffering!  Still this was nothing compared to what my Lord had suffered on the cross for my salvation.  But I tell you, I simply could not watch that movie during that time in my life.  I was too traumatized.  It would just be too painful on too many levels.

This week marks the 5-year anniversary of when I first started having wretched seizure attack episodes on a daily basis.  I had gotten sick with a biotoxin illness for 6 months before then when an “alternative” treatment modality triggered the onset of seizures.  (These continued today although gratefully the pattern is changing some again and this could become a good thing.)  The suffering with these often violent convulsions has been tremendous.  Never would I have imagined such a terrible, terrible illness.  (See them here.)  Even the tumultuous years around 2004 do not compare to what I have endured more recently.  Even those who agonized with me during the various aspects of the stress 13 years ago do not compare to what my beloved husband Steve has endured with me during this illness.  Suffering of this magnitude brings hell to earth for a part of every day.

There are other periods of time that I would characterize as suffering:  the incidents of abuse in my childhood.  Some were sexual, others physical beatings, and several involved satanic rituals.  All were profoundly damaging and required years of help, love, and the healing grace of our Lord, Jesus Christ to overcome.  The abuse kept my mind, body, and emotions trapped in various ways for decades affecting my ability to function as an adult woman.  Somehow I did find my way out when I found Jesus Christ as Lord and Savior; eventually the pain, the “suffering” largely went away.  Self-destructive habits and negative thought processes faded.  Forgiveness and healing took its place.  I became more whole, interestingly surging even now to a new level of peace as the seizure attacks lessen.  Suffering from abuse no longer troubles my spirit.

The Lord doesn’t waste anything in His plan for our lives.  After 2006, I got to experience a magnificent restoration from the “years the locusts had eaten.”  (Joel 2:25) For example, the insurance settlement from the condo fire (where I was renting an apartment) ended up paying for beautiful décor in a condo of my own where I could rebuild my life as a single woman.  Flash forward to more recently and I wrote here of the blessings that have come despite enduring a serious illness including meeting all of you through this blog!  And all that childhood sorrow gave me a compassion for others that has served me well caring for others for decades as an occupational therapist.  Despite my suffering, I am grateful that my Heavenly Father and Husband has allowed me to see His hand, His plan that has masterfully created goodness from the suffering He ultimately allowed for His glory.  I now believe it was all for my good too.

unyru paper, collage, art, wall, Romans 8:38, Jermiah 29:11 Christian, artist

Collage art wall mural in the hallway of my condo with a self portrait too.

And what about the more contemporary definition the word “passion?”  The connotation of emotional, physical, sexual energy?  Let’s just say there is much in my life now to be passionate about in having a wonderful husband (my “intended beloved”) who loves the Lord and me too.  Then there’s my love of growing things in the garden (from my mom) that has kept me moving forward on my worst of days in addition to my best of days.  I love digging in the dirt!  Perhaps most importantly is my passion to champion the calling of the Holy Spirit when He compels me to:  serve someone, encourage someone, love someone, share the hope found in Jesus Christ with someone.  When I hear the call of the Holy Spirit moving me in a particular direction, I move forward with a razor-sharp focus that consumes whatever energy and resources are available to me at that moment.  Whether it is in the middle of the night making my husband’s lunch for work the next day or baking cookies (despite a terrific headache) for that service dude who is having a really, really bad day.  Me and my Lord getter done!

This I have come to know:  that if the Lord calls, He empowers us to respond.  That is what passion is all about, good or bad.  And guess what?  He made the suffering, all of it, good for us on Easter morning.  How about if we keep this in mind the next time he calls?

JJ

So much to consider

So we come to a crossroads, my beloved and I

From where will we go from here to continue my care?

No cure hath cometh from a year of killer drugs within

Five years of tortuous suffering with costs beyond compare.

We don’t know why the trauma continues to this day

Whether it will continue or end?  There are no promises

That when we show up in this life that all will be grand

But shunting the yearn for heaven my dear, the treats beyond.

Today I am tired but stable, weak but reflective

Grateful for so much while I ponder theses woes . . .

My beloved is sweeter than honey

His warmth a comfort to my hol-ey bones

He loves me deeply still; I see it every day

And life’s sweetest:  love from this man I have come to know.

Alas I search the scripture and find that even Job

Needed to trust in the Lord not knowing why

His suffering exceeded the faith of his friends, his kin

When all was really a battle within the spiritual realm

Having very little to do with his past, to do with him.

So in the seasoning of the late missionary, Helen Roseveare

“Can you thank me for trusting you with this experience

Even if I never tell you why?” God asked of her in the midst of terror.

“He doesn’t have to tell us why,” she would learn

“But He often does in His gracious, loving mercy,” for sure.

So I will seek the perspective of the privilege

It is to be used in this life by the Lord almighty

Relinquish my frame to His plan and outrageous love

Then wait and see:  He is worthy.  My response:  humility.

JJ

God, sun breaking through clouds, sunrise, sunset, storm, hope, rays of sun, sunshine, clearing

 

 

It tops the list

We all have times that define who we become:  turning points such as the day we got M-arried, came to C-hrist, experienced a T-raumatic event, W-itnessed the passing of someone we dearly loved, or maybe we I-nherited some money.  I have experienced all of these and some more than once!  I will leave you hanging on which one(s) have occurred more than twice!

Tonight I will publish the big “T” list for the most traumatic events I have experienced in 2 sub-categories as follows:

Emotional Trauma.  March 4, 2003:  The night my former spouse left me.

Physical Trauma.  December 18, 2016:  The afternoon a case of shingles took hold in my face.

Gratefully the gifts of time and good counsel have allowed the first one to fade over the past 14 years.  I have a wonderful husband now who loves me beautifully in my “intended beloved” Steve.  He has witnessed and endured the second big T with me two weeks ago.  I think we are both still in a bit of shock as I continue to recover.

I had just been diagnosed with shingles on Friday, December 16th in my doctor’s office.  (Shingles is a flare of chicken pox in adulthood triggered by severe stress.)  Dr. J prescribed an anti-viral medication and sent me off to the grocery store pharmacy to pick it up.  Within a day I started to itch and the pain in my right jaw was ramping up; the lesions on my face began to get bigger and blister.  Various remedies here at home were not making any impact.  I began increasing my dose of Ibuprofen to near-prescription levels to be able to sleep.  By Sunday I was holding the right side of my jaw and ear canal in agony and taking double the OTC dose of pain meds every 6-8 hours.  I thought that maybe I needed a chiropractic adjustment to treat the wrenching my neck from the daily seizure attack episodes.  However, the interim massage or stretching techniques were not working; heat or ice made everything much worse.  I sat in our sauna for awhile and had a rash by the time I was done.  What was going on?

Nothing really prepares you for the cruel, searing, unrelenting pain of shingles when it erupts in sensitive areas of the body!  I started to scream when the pain randomly pulsed up like a lightening bolt cutting through my jaw and ear.  I called our local Rapid Care Clinic and figured out how Steve and I would need to get there before it closed at 2:00 p.m. on a Sunday.  The internist who saw me marveled at the lesions that were now worsening both inside my mouth and on my face.  The rash was from the Valacyclovir (anti-viral).  He sent me to the hospital . . .

Even a crow bar might not have been enough to wrench my hand morphed into my face in a feeble attempt to control the pain.  Excruciating stages of waiting followed.  It would be EIGHT HOURS from my last pain medication at home before my first dose of Torodol in the ER (that did NOTHING, by the way!!!).  It would be an  additional FOUR HOURS before I would receive Dilaudid in my hospital room that brought relief and another day and one-half of nausea that broke through the Zofran administered to counter it.  Four liters of fluids ran through my veins over the next 3 days.  I held back portions of food on my bedside table to try and protect my stomach from the two new anti-viral medications, gabapentin, and prescription-strength Ibuprofen needed to manage my symptoms.  I slept 3 broken hours each night.  The foam ear plugs didn’t work.  HGTV got me through a drugged, constipated stupor.  I was so very sick.

I will never forget what happened in the tiny room in the ER where Steve and I landed that Sunday afternoon.  The room was so small that the gurney was positioned on an angle.  There was no call light and medical supplies were stuffed in open shelving within reach of each of us.  That’s not right!  A doctor eventually came in and started questioning me as if he had just met me in the hallway outside the gift shop.  “Did you not get report from the Rapid Care Clinic or internist who sent me here?” I blubbered.  “All of my allergies are in your computer system,” I tried to state while keeping some semblance of composure.  He left to go check as if to bow at the end of a chat at a wedding reception.  Unbelievable.

We tried to remain calm.  There was a lot of commotion outside our closed door from the activities and people moving about beyond it.  Hours were passing.  I had never had children before so the pain of birthing was not in my memory.  They do say that the pain of shingles is worse but I really do not know that personally.  Steve appeared numb with exhaustion.  We have both been through so much trauma over the past 5 years of my nightly seizure attacks, tens of thousands of dollars of medical expenses, lost holidays/events of life together, cancelled dreams, permanently altered sleep patterns, maddening chemical-avoidance activities, and existence from one crisis to the next but even so, we were not prepared for this night.

Then I completely came unglued.

Blood-curdling screams erupted from the depths of my soul.  Wails of grief were so deep that my entire body twisted and extended against the bed as heavy tears burned my scorched face and dampened the sheets, my clothes.  (I would end up wearing my sweats that way for the next 3 days.)  I could hold on no longer!!!  For a brief second I was able to glance at Steve as I gasped for air.  I never want to see that pained look on his face again as long as I live.  His fingers were stuffed into his ears to protect his hearing.  I was that loud!

Someone burst into the room to see what was wrong.  I could not speak, just screech!  It hurt my good ear and infected ear alike.  I could not stop except to push air into my lungs by thrusting out my chest wall.  Soon came the IV Toradol and it did nothing.  Back on my allergy list it went.  There was a chance that it would help this time.  It did not.

Still groveling, gasping, yelping in pain, someone eventually wheeled me out of that tiny room, onto a cold elevator, up a couple of stories, and into a room outside a noisy nursing station somewhere in that massive medical center.  Room 475.  Then Steve and I were alone.  Actually I don’t remember where he was.  I could not stop the yelps and hot tears as a rather disturbed-looking nursing assistant tried to help me to the bathroom around yet another angled hospital bed, infusion pump in-tow.  [Two weeks later I would learn a possible relationship between urinating and relief of seizure attacks as each relate to the issue of dehydration.  (See https://justjuliewrites.com/2017/01/03/hydration-is-key/ for more discussion on that topic.)]  More agonizing hours brought a nurse with another pain med on my allergy list but I did not care.  The torture finally began to come down some for the first time in half a day.

What remained was a shell of a man and his wife who kissed goodnight in that darkened hospital room.  The acute phase of the Physical Trauma was coming to a close as the chronic phase of shingles was to begin for me:  now officially labeled a “medically complex patient.”  There have also been complications of severe constipation, mouth sores that spread to the inside of my mouth and throat OPPOSITE the herpes simplex inside-and-herpes zoster outside on the right side of my face.  The body rash on my torso and forearms that accompanied the Valcyclovir spread to my groin on the right when the anti-viral medication was changed to Famciclovir.  Eventually the Hospitalist/Physician’s Assistant (because I never was allowed to see an Infectious Disease Doctor as promised you see) agreed to let me try Acyclovir with an OTC remedy just hours before discharge from the hospital.  I am still on it and tolerating it.  Whew.  Most importantly, the new combinations of medications controlled the worst of the facial pain.  Two weeks later I have started to sleep more hours in a row!  Woot!  Woot!

Interestingly, I was spared virtually any neck or back pain during the entire ordeal.  I had been in the ER earlier in December with intractable back pain.  Good golly!  Hydration and the use of new antibiotics for the treatment of Lyme disease probably played a role in both the flare and alleviation of both events.  Go figure.  Or maybe it was those simple back exercises I had started in the middle of the night before going to bed that did the trick?  Who knows?  I am grateful to the Lord for some sparing during this crisis, these crises.

The Lord is like that you know.  While he promises there will be trials for Christians during our lives, he also promises that they will have purpose and meaning in His plan for our lives.  There will be grace and goodness along the way (ie. HGTV hospital hangover!).  Jesus Christ grieves over our suffering and knows it too from His beatings, stabbing, death on a cross.  I will never know the amount of Physical Trauma that He willingly endured for me, for us when He died in our place for our sins.  And one of His own, Job, endured much more with tragic losses and boils over his entire body (not just his mouth and face), before the Lord blessed him immeasurably, restored his life anew.  After the Emotional Trauma noted above from 2003, I got to experience this kind of blessing.  That gives me hope with the more recent Physical Trauma.  Knowing all of this is helping me to rebuild, heal, go on from December 18, 2016.

Gentle Reader:  to whom will you turn when your time of testing comes?  I hope and pray that you will turn to the person of Jesus Christ:  our Redeemer Who makes all things new, all things right, all things good.  Even in the worst case scenarios of life, we won’t be suffering forever you know.  Our pain will not be wasted.  How about if we spend our lives worshipping the Lord together?

My God is Jesus Christ.  I can’t think of a better Person to place at the top the list of who I want to spend eternity with when the time comes.  It might even be soon ya know . . . JJ

 

 

The Medicine Cabinet

Pray tell how much do you think I can hold

In my shelves bursting forth from the orders?

“Try this, take that, or Google the one I heard about”

Becomes license for judgement once thought to be clinical.

Not learned in school but that of “hard knocks”

The ideas flow too simply during paid consultations

Such is the life of a lab rat in the cauldron of illness

Where test results get mixed with expensive remedies.

So I look up interactions online thanks to drugs.com

Although many will be borne out of a bad trip on a Tuesday

When I try your best guess out of desperation, my last dime

And occasionally find relief or find hope a fraction of the time.

“I’ll take it,” I say under my breath as a new protocol prints out

My medicine chest overfloweth, my fingers sore from researching

Til someday the Lord crafts a breakthrough I shall not give up:

For the Great Physician love me more than this infirmity for sure.

Just look up, look out Gentle Reader if you suffer along too

Have I not commanded you? Be strong and courageous.

Do not be afraid; do not be discouraged,

for the LORD your God will be with you wherever you go.

Proverbs,4:22, medicine cabinet, God's word, Bible, the word medicine, hope, healing, Great Physician