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?

She remains silent

The Jane magnolia remains silent at the birth of April’s Spring

Her violet blooms resting beneath garments of fuzzy gray pods

Waiting, tempted to peek into the sunshine, then waiting some more

For emerging too soon would be to her peril and loss of beauty, my dear.

Oh if I but could rest not by angst but by design like my friend

Knowing the Divine timing and trusting therein better than I have

That loveliness would come in the fullness of my time as well

Instead of deadness, jagged edges of pain, the tazoring of my mind.

Will there come a day when I shall join you in the sunshine of morn’?

When I unfold to freedom of spirit, of movement as in song so sweet?

Where there is little thought to my comings and goings:  I will just go

Just live and give and do and think, knowing all is right with the world?

I do not think it is right that I should suffer so day in then day out

With hope only of heaven when my hopes are dashed 10,000 times and more

The seeking compels me for hours:  pouring over records, research, and facts

Only to be smashed against the wall of my limits, my fate, the unanswered prayer.

What will my own senescence bring?

There is no patience left in me to endure.

No resolve carries me through.

Tears from deep caverns gush forth . . .

But breathe I shall for time shall march forth into the Spring of each new day

Life will go on as our Lord promises His love will go with us along the way

Perhaps one day I shall “bloom where I am planted” as the ol’ poster exhorts

Ever loud, ever quiet, ever true for having stepped out in faith ever simply,

and even ever small.

JJ

 

Jane, magnolia, poetry, Christian, gardenng, Spring, pink, flower

Waiting

Like an iris corm sleeping beneath the chilled earth

I, too, wait for my moment to emerge from below.

Weathered by icy snow, or warms-n-thaws that heave me so

My countenance strains under the stress despite a Divine plan.

When I stopped asking, “why?” I was left with less hope not more

For my search for meaning had brought me forward to face another day.

No answers have come, few bigger prayers have become reality

Yet my Lord has carried us with His unending love and care just the same.

We are going to make it to a better place one day, don’t you see?

The one where no tears carry the day and all is lovely and good.

Until then I wait or drag myself up after torments in the night, the day

Shall all thus make the happy ending sweeter one glorious day soon.  JJ

varigated iris, hope beyond, Christian, iris, inspiration, garden, meaning, gardening, metaphor, poetry

 

What becomes normal

Truly none of us are normal deep down inside.  We all have our crazy stuff, some more than others of course (myself included!).  Better for most of that stuff to stay buried you say?  Maybe so.  Then again, why ever lose hope for becoming more whole, getting well?

For some of us, we don’t get to choose what will be normal for us and our loved ones.  This is particularly true when someone gets sick or suffers a serious accident affecting them for say, 6 months or longer.  After 6 months the healthcare profession changes your status from acute to chronic.  By then the “normal” way of life has broken down and often looks a lot different than before the event.  Expectations can change for the future; often people look at you or treat you differently as well affecting many, many relationships.

When living with a serious, ongoing illness or disability, new norms for life get set in motion and become habit.  At some point we have to adapt to the changes in routines, levels of functioning, finances, symptoms, emotions, social dynamics, recreation, work, and more.  If we don’t adapt then we would spend incredible amounts of energy and resources repeatedly trying to figure out how to cope with the changes.  Instead, new daily activities get strung together as new habits, eventually become routines and may even become a new identity as they combine into roles such as “patient,” or “caregiver.”  The phrase, “new normal” comes to mind when such profound changes affect both our lives and the persons around us every day.

We don’t necessarily like where we have landed when it is undesirable.  Sometimes we can’t change things for awhile; other times the changes become permanent.  We do have to make a choice about how we cope with all of it emotionally and in our thought processes including our self-talk.  Will we be angry or find peace perhaps in the promises of our Lord, Jesus Christ?  Will we give up or keep seeking for answers to aid our recovery?   Who will we blame for our lot in life at any given moment?  Acceptance may come or it may never arrive on our doorstep.  However, some semblance of acceptance is key for moving forward.

The process for me in finding a new normal has occurred slowly over 5 years of battling a serious illness.  If I were to summarize the 3 tests noted above of adaptation, emotional adjustment, and thought processes I would admit that I do not like most of the current outcomes.  I don’t like the myriad of mold and chemical-avoidance strategies that everyone in our home must complete every day to minimize triggering a seizure attack episode for me.  But we do them anyways.  I used to cry just about every day and now it’s much less, mostly when discouraged by roadblocks in my care. But I keep searching anyways for answers.  Lastly, I don’t and have never doubted that these daily wretched episodes have a biological (NOT psychological) cause that can be treated.  So I use the tools I have to help myself get well.  I don’t know when or how or why the episodes will stop.  I do believe that one day they will stop completely.

And when the seizures stop I will embrace a new normal.  Things won’t be the same as they were 5 years ago when I was working as an occupational therapist in home health care.  My physical frame is weaker and injured from all of the physical trauma and I’m not sure how much I can get back.  I will try, however!  I can no longer attend our church, contributing to the loss of many relationships that were just getting started when I got sick.  Travelling is restricted to camping in the Tin Can Ranch (on wheels!) for the foreseeable future.  On the flipside, a few positive outcomes include having tremendously increased my computer skills, renewed my interest in entrepreneurship, and desire to support my husband’s growing paddling dealership.  Being his helpmate has given me purpose on my sickest days when making his lunch when I am awake in the middle of the night was all I could do for my Stevers.

What becomes unpleasantly “normal” may not have to stay that way forever (and usually doesn’t).  Those of us who learn to trust in the plan that the Lord has for our lives may find it easier to accept the changes when they come.  We let the Holy Spirit guide us, comfort us along the way.  We keep our eyes fixed on Christ and our hearts and minds soaking up His Word.  We are then better able to let go of wanting things to be as they were and are better ready to grow into the possibilities of a more meaningful, maybe even more fun, tomorrow.  I never thought I would be the Assistant Editor of a national canoe and kayaking magazine nor blog or help an artist friend complete her website.  I just did what I could with what I had, where I was (as Theodore Roosevelt once said) and have landed in a better place in many ways.   Better yet, I trusted in knowing:

Jeremiah 29:11 (NIV)

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.

You will be the first to know about those plans for sure, Gentle Reader.  We have come a long way together, you and me.  I thank you for sharing my journey.  Feel free to share your thoughts about the “normal.”  We are going to be alright no matter which side of the spectrum we are on, eh?  JJ

After TriAdventure Race

Steve and I celebrate his team win at the 2010 Maumee Tri Adventure Race

Full Moon Follies

My beloved qualified as my “Night in Shining Armour” last night.  If only it were for a victorious time instead of quite the opposite . . .

One would hope that significant interventions to quiet my inner storm would start working already.  Or at least tame the tempest beast when challenges such as noxious exposures and the mysterious workings of a full  moon come along.  I have read a hundred or more testimonies of the latter:  that for persons battling chronic disease, symptoms can worsen around the time of a full moon.  Perhaps it coincides with the life cycle of various bacteria or parasites?  Who really knows?  What I do know is that the worst of everything came forth and both of us are pretty beat up today from the lack of sleep along with the emotional and physical trauma.

  • Continuous convulsive spikes of every dimension
  • Headache, joint and muscle pain, ringing in my ears, dysarthria, bradykinesia, left-sided parasthesia, hypersensitivity to sensory stimuli
  • Visual anomalies (spots of bright lights when my eyes were closed)
  • Cognitive slowing
  • Difficulty breathing and communicating
  • Incredible frustration and discouragement leading to hysterical crying and anguish
  • Neurological collapse requiring maximum assistance with feeding, toileting, and dressing
  • Eventually passing out in bed around 2:30 a.m., partially dressed with no recollection of falling asleep

The 100% THC-free CBD oil provided a temporary pause in seizure attacks as did a large dose of liposomal Biocidin.  The entire episode finally ended shortly after taking my (3rd) nightly dose of Low Dose Naltrexone.  I must add that the only positive part of this experience was when I could open my eyes and saw my hubby in his night clothes as he cared for me.  I liked that!

Please pray for us.  We are exhausted.  The demands of life go on just the same.  My MRI with NeuroQuant study our of State will be delayed due to severe weather expected tomorrow; I am hoping to reschedule the appointment for later in the week.  Let’s hope that the NeuroQuant and the updating of multiple medical tests this month will be fruitful, Lord willing.  My Jesus goes before us and sees us through it all.  I trust in His timing, His plan for our lives.  Thank you for praying.

And thank you Steve for your heroic love and care.  May the Lord carry you today.

We wait on the Lord this day and always as we try to figure this out!  This illness is killing us. JJ