Tag: Christian and chronic illness

Known in the Gates: Part 2, The Inside Story

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One of the movies that has really resonated deeply with me is, The Breakfast Club.  Please see my previous post for the catchy theme song that underscored the film and one of the most poignant scenes that is also pertinent to Part 2 of this 3-part blog.

In Part 1, I described the isolation that I have felt when enduring a serious illness and how the Lord still gets me through the toughest of days.  His Word is my greatest comfort; the leading of the Holy Spirit and His presence are my greatest companions.  I ended with a question,

But how well does he really know me?

Sure, my Lord crafted me before I was born and set forth all that I would be, all that I would endure and accomplish.  His Words in Psalm 139 declare that He knows my “innermost being.” Does this include the longing of my heart as well?  If it does, why has He allowed me to become so dreadfully isolated?

Maybe someday I will get to see why so many family and friends have chosen to “walk on by” me as it says in the theme song of The Breakfast Club.  Have I not been a good friend?  Maybe I was not.  I remember about two years into this ordeal someone contacted me and asked me about getting together for coffee.  I replied “yes” and then I never heard from her again.  My spirits had soared then crashed and burned.  For believers in Jesus Christ, the answer to the “why” question is usually left for eternity.  We simply may never know “why” this side of heaven.

Those of you not living in isolation may not have any idea how much Satan uses this experience to tear a person down.  He can prey upon all of our negative emotions and be allowed to create havoc in our lives.  (Yes, ultimately God is still in charge!)  Yet I know that it’s really not about resisting Satan or about losing the people in my life.  I resist the devil and his demons with the sword of the spirit:  the Word of God as described in Ephesians 6:10-17.  People come and go in our lives and that is the normal ebb and flow of life.  It really is about my response to the taunting, the loss of these relationships.

My challenge has been particularly great due to the effect that this chronic illness has had on my brain.  Responding to Satan’s lies and the loss of relationships has been affected by the change in brain chemistry that came with chronic illness.  My ability claim victory in the name of Jesus Christ and fully embody the companionship of my Lord have been affected.  Satan’s lies have been magnified.  My social skills have eroded.  My ability to think clearly has been altered.  And I struggled to override these skill deficits but could not, even if I tried.  Allow me to explain.

Only recently did we discover that excessive neurotransmitters called catecholamines (epinephrine, norephinephrine, and dopamine) are likely contributing to my mood changes, thinking and communication skills in addition to possibly causing the convulsive episodes.  This is happening due to the expression or “turning on” of polymorphisms (SNPs) or breaks in several enzymes that help form my DNA code.  The DNA code is the instruction manual or blueprint from which the body functions.  Everyone has a unique combination of broken SNPs that get turned on by illness or significant stressors in the environment (such as exposure to mold).  For me the factors included everything that I have written about in this blog:  biotoxin illness/hepatitis, latent Lyme disease, Candida toxicity, mold illness, infected root-canaled teeth, and mercury toxicity.  That’s a lot of stressors!  These illness and environmental challenges became a trigger for disaster.  I even have the data to prove it, all of it!

methylation cycle, Dr. Amy Yasko, SNPs, Lyme disease, mold illness, mitochondrial, mito disease, methylation, B6 deficiency, CIRS, mold illness,
One version of a methylation cycle from http://ihateticks.me/2014/10/06/methylation-for-dummies/

For some people this process manifests as a Mitochondrial Disease or a disruption in the methylation cycle inside the nucleus of the cells of our bodies.  My thought life was affected.  My mood was affected too.  I had waking and nightly nightmares not based in any reality past or present.  Those were internal things that my beloved husband, Steve, and the healthcare community could not see very often.  Several healthcare practitioners labeled me as having a mental illness of sorts, often without even completing a mental status exam or workup!  Gratefully, Steve believed me.  They all saw the wretched convulsive episodes that have plagued me for hours every day for 3 1/2 years.  And Satan was allowed to enter into the whole dynamic with lies and attacks that I will definitely write about at another time.  Absolute mental and physical wretchedness.

But now the gig is up!  Two days ago I woke up from a lovely nap after starting to treat this condition.  I had my first 16 hours seizure-free!  It’s as if someone turned on the lights in my brain!  Not only do I have a formula for correcting the brain-part of the process but the prayers of deliverance against the spiritual warfare are taking hold.  The cascade of negative mental, physical, social, emotional, and spiritual suffering is beginning to turn around. Lord willing, I am going to get well!

My Jesus knows all about every aspect of what I have described here.  He also knows the desires of my heart.  How do I know this?  My prayers long before this illness began was to become whole.  I had been broken by the consequences of a hard life:  events out of my control.  Many times during trauma the Holy Spirit would bring encouraging scripture to me that kept me moving forward.  Yeah, finding hope and finding myself has come through horrible, ongoing isolation and trauma.  I have worked hard to recover from so much suffering in my heart, my mind, my body.  Each step of the way has been both painful and meaningful.  Yet I tell you, Gentle Reader that nothing has been wasted!  I have learned to trust the process in EVERY CIRCUMSTANCE under the protection of my Lord and Savior, Jesus Christ.  And now the desires of my heart are being realized.  Cool beans.

So how does one rebirth the desires of one’s heart?

Jer 29.11b

To be continued in Part 3 . . .

Puffy white clouds and 5 sparrows

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 6 Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. 7 Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.  Luke 12

At first it looked like a gentle breeze flowing through the branches of the variegated dogwood bush outside our bedroom window.  Puffy clouds drifted past the backdrop of the truest “sky blue” you could desire on an early summer afternoon.  Such a simple scene, peaceful too.  Then again the rustling appeared to come from below my view.  Was there, wait, yes maybe there’s a little critter in there moving the branches about?  And lo there she was:  a lone house sparrow spritely jumping about within the leaf cover in and out of my view just a few feet away.  Better not move a muscle or I might disturb the work of my feathered friend.  Does she know that I could almost reach out and touch her marbled wings if the screen window didn’t separate us, didn’t provide secluded freedom for your Saturday play . . .

The little one flew away as my gaze returned to the light blue walls next to the bed inside the window.  Maybe if I waited just a little longer another visitor would appear?  To my delight the green-with-white birdhouse was rustling again from the top, the bottom, and even just beyond my view!  Let’s see:  there’s one, two, three . . . a fourth appeared and darted deeper into the cover of leaves as a fifth little birdie perched right in front of me too.  Silly little one.  He began preening his ecru-colored chest feathers without a care in the world as the branch bobbled up, down, and all around.  He reminded me of my brother’s childhood parakeet, Perky.  How they flex their necks so steeply to reach the soft feathers that form a collar of fluff I’ll never know.  Such a curious, skittish, carefree creation indeed.  Then in a matter of a few seconds, they all flew away . . .

I was alone again.  Maybe I could try to move my head and adjust the comforter covering my chilled shoulders?  Yes, that’s good.  But to move my legs and arms was not to be just yet as my attempt to do so triggered another mini seizure attack episode.  Sigh.  I thought I would be recovering by now.  Not so.  Oh well, when my husband comes back I’ll ask him to bring me the lunch I had made myself earlier and put into the frig in case we were to go out on our tandem outrigger canoe this afternoon.  What a nice treat I thought it would be to have something made ahead of time that fit my special diet and tasted yummy too.  Not quite.  Gratefully it wasn’t too long before he returned to check on me, brought me the container of rice paper finger sandwiches and fed me several bites, one by one.  Then he put the bicycle water bottle to my mouth so I could sip some water and wash down the food sticking to my throat as I lain sideways on the bed.  A few bites, a long sip, a few bites, a long sip.  He has this routine down pretty well by now.  Thankfully these complete neurological collapse episodes only happen every 10 days lately.  They used to be every couple days . . .

In time my strength returned and I was able to put a pillow under my own head and feed myself.  Unfortunately something triggered a major seizure jolt when my beloved returned, setting me back again for awhile.  He was sitting close to me and I suddenly needed some fresh air from outside the window.  Stevers obliged then left me alone again to recover per our routine for these sort of things.  Again I revived.  Eventually I was able to weakly get out of bed and start to put on some clothes.  That’s a nice thing to do after a shower at 2 in the afternoon.  I was feeling a little funny lying there naked rolled up in the comforter.  Oh well.  It’s the best I could do after beginning to collapse in the shower an hour earlier, struggling to dry myself off, and Steve helping me lie down as it appeared I would be falling over any moment.  Flash forward almost two hours as the episode was resolving I was grateful to be able to move my left arm again.  Looks like I would be o.k. albeit shaken for several more hours anyways . . .

Sitting outside in the sunshine helped me regain my strength.  Of course I had another one of my low oxalate snack concoctions (white chocolate!) and a refill of cool water in my trusty Summit City Bicycles and Fitness water bottle.  Little did the guys at the shop know how helpful that bottle had become when I needed a special flow-control mouthpiece to refresh me when in bed, not on the Fort Wayne River Greenway!  Maybe someday soon I’ll get back on my bike.  I am grateful to have had a test run of two miles earlier this Spring; I should be able to repeat a short ride on a better Saturday afternoon really soon, Lord willing.  How hard could it be to peddle a few miles?  Well anyways sitting outside on our patio later this afternoon with pretty gardens all around me and the sun still shining brightly overhead did me a world of good.  The puffy white clouds still filled the sky and I could hear sparrows, robins, and more in the distance.  I got up to pluck a few weeds, pick a few radishes, tinker here and there before returning into the house.  Perhaps my beloved would understand that this day would be better spent at home than paddling on a lake somewhere?  Change of plans.  Enduring these kinds of afternoons together makes it obvious what we should do, more than words can ever say . . .

The rest of the day was decent as I prepared a nice dinner and some food for tomorrow in case we are able to reschedule our outing on the water together.  I do try to be hopeful, eh?  As most Gentle Readers would recognize in this blog we tend to live our lives over here a bit spontaneously:  making plans more at the last minute, in the afternoon or evening, and after checking the weather report/Julie’s snack supply/whatever we can reschedule to be able to get away . . .

This evening?  Not so nice.  We are just not sure what is going on with these wretched evening episodes again.  After a full year of 1-3 hour episodes virtually every night after dark and up to 30 minutes most mornings, you would think one of these specialists I’ve seen would have figured it out!  Yes, my melatonin level is off the chart and melatonin levels change at night.  I am getting out in the sunshine just about every day, exercising at night, avoiding foods with tryptophan (that tends to elevate melatonin) and more per my internet research on the subject yet the excess must be persisting.  (Labs to follow!)  Then my new biotoxin doctor laid a good one on me yesterday, saying that if anyone could figure out what to do IT WOULD BE ME SINCE I KNOW MY SITUATION THE BEST.  Whaaaat?  Why do you think I pursued your clinic out of State?  I was hoping YOU could figure it out!  Even my brilliant functional medicine doctor in addition to your brilliant functional medicine colleague have largely set me adrift.  Now you are saying since I cannot tolerate Dr. Shoemaker’s biotoxin protocol that you cannot help me either?  If you think I was able to figure this out would I be calling you?  Geez oh man.  Lord, come what may . . .

Back to the story of the bird in the hand is worth two in the bush OR wait a minute:  there aren’t any birds here right now since it’s after 4 in the morning!  Yes, I’m back to my late night schedule again.  Let’s see . . .  perhaps Luke 12 can remind me that just as the Lord provided me a sweet distraction of His delightful creation in my time of distress, He cares for me and for Steve in our times of distress too.  He has provided for our needs despite the incredible expenses, sustained us during multiple special events when extraordinary measures were needed to keep me as safe as possible, and granted me the time and space to get well when I cannot work.  I am grateful for my incredibly loving husband, a pretty home and gardens to enjoy when I cannot go out, and sparing of my abilities to think take care of my basic needs.  Sometimes I need to wait for the Lord’s timing on some of these things which is o.k. too.  I have learned to appreciate blessings in smaller packages with gratitude as they present themselves each day . . .

So I choose to take to heart His statement, His promise to care for all of the details of my life.  He knows all about what is happening over here and desires for me to be courageous, not afraid.  He has laid it on my heart that He has a plan and a future for my life (Jeremiah 29:11) and that nothing will separate me from Him or His will (Romans 8:38).  I get this.  Perhaps it’s why I don’t spend as much time crying anymore when the wretchedness comes.  Instead I’ll say,

3 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.  Romans 5 (ESV)

With the lightness of heart shown to me by my Creator God this afternoon in my time of need, I’ll take the last word of the paragraphs granted by His grace and noted above:

This new day will come anyways, and no matter what may come or others may say, I will find a way to play with lightness of heart in celebration of the One who goes before me and will never go away!

Thank you Jesus for your Word, for your gift of words.  Thank you for helping me get through that to which you have called me and should any good shine through may it be for your glory Lord.  If it is your will I ask for your healing mercies and a time of blessing.  I lift up my husband (Steve), and my brother (Mike) too for your anointing and blessing.  If there is anything hindering our walk with You, please guide us, restore us through your Holy Spirit so that we may delight in sweet fellowship with you all of our days.

In Jesus’ name I pray.  Amen.

HouseSparrow

Missin’ Mike and Good News Too

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There is good news to report:  my brother will be moving into a better rehabilitation facility soon!  His fiancé is now his legal guardian and has received preliminary acceptance of his admission into the rehab. unit of a skilled nursing facility close to their home in Port Huron, Michigan.  Michael’s Medicaid is now approved which makes this transfer possible.  Lord willing he will be there within a week.

My heart is breaking that I have not been able to see him since our initial visit to him at St. Johns Hospital April 15th.  St. Johns dumped him into an inner city nursing home when a place became available who would accept someone with “Medicaid pending.”  The social workers claimed that they contacted 35 facilities before St. Francis accepted him.  While we are grateful that this search for a place ended up extending his inpatient rehabilitation 10 more days, the place he got transferred to isn’t much more than “3 hots and a cot.”  Oh I guess they give him his medication too and an occasional bed bath.  Not much for a 53 year old man who has just suffered a severe stroke and needs considerably more care.

I am sad that there has been no follow up on his medical needs after the initial physician visit.  (He has a tumor on a kidney that was to be scheduled for biopsy but nothing has happened.)  The staff at St. Francis has lost or been unable to locate most of his clothing.  Michael sits in a “geri chair” for much of the day which is a large vinyl recliner chair:  completely dependent upon others to be moved out of his room, into the dining room, or possibly into the T.V. room.  I understand that the building is very old with stained walls, stench of incontinent residents, and constant sounds of demented residents or staff milling about.  Michael has gotten weaker from inactivity.  His weight continues to be down even with the meals and treats brought to him by his fiancé and our cousin, Lisa.  Lisa is an optometrist on staff with the facility but that has made little difference in meeting Michael’s care needs.  Lisa witnessed a nurse writing her requests in the nursing 24-hour care log.  Nothing happened:  1) he continues to crave cigarettes whereas a nicotine patch would ease his chemical dependency and 2) he never got the wheelchair promised upon admission and supposedly recommended by the physical therapist.  I am convinced that the poor, sack-of-potatoes positioning in the recliner chair has contributed to his worsening left shoulder pain.  Such is life post stroke with left hemiplegia and no rehabilitative care.

In the meantime Sister Bear has secured a television/DVD player, wheelchair, walker, and bedside commode for him.  However with the lack of security for his personal items and transportation issues getting the items to him from their respective locations (wheelchair and commode in Mt. Clemens, walker in Adrian, and T.V. here with me in Indiana) everything is on hold until he moves into a better place.  Lord willing everything will move forward soon as various family members have offered assistance to get these items to him and his fiancé (also named Lisa!).  Lord willing I will be able to visit him at Marwood in Port Huron in about 2 weeks.  Surely my serious respiratory infection will be resolved by then and travel arrangements will come together; the seizure attacks have lessened some as well, gratefully.  I would have never tolerated visiting Mike at St. Francis due to the extremely high potential risk of environmental triggers for seizures.  Even the outdoor patio would have been an impossible place to visit coupled with the resident smokers.  Knowing all of this contributed to my heartbreak of late.  There was nothing I could do but keep in touch with everyone, secure the equipment, pray, and wait.

So I wonder what it has been like for Mike to be so debilitated, alone except for some weekly visits, in a dumpy and dirty living environment?  I understand that he had his Bibles brought to him and pictures taped to the wall next to his bed.  His fiancé Lisa says that he was trying to do his exercises on his own as best as he could.  Without being able to get up and bear weight on his left arm or leg, however, the benefits of exercise would be limited.  The risk for complications has been elevated with some realized as ongoing pain and weakening instead of continued progress.  He was too debilitated to return home from St. Johns Hospital without 24-hour physical assistance and considerable accessibility modifications.  Hopefully he will be more mobile and independent when it’s time to leave Marwood and go home.  In the meantime he has had a lot of time to think about many things.  I hope he reached out to the Lord, the person of Jesus Christ, in his time of need.  I hope he will find some purpose, some meaning for this desolate oasis of time.

Most communication between us has been cut off since Mike arrived at St. Francis due to the sorry state of their phone system.  (No surprise that the place is rated one out of five stars.)  After getting through to talk to him on his first day there, the facility phone was always busy when I called.  Twice I happened to call when his fiancé Lisa was visiting so I could hear his voice for a few moments.  The last time there were so many loud voices and screaming in the background that the words were tough to hear.  I can picture the scene in that place very easily.  I worked in all types of care centers from the inner city to private pay life care communities as an occupational therapist.  Many times I completed those wheelchair screening assessments and crawled around dirty, stuffed storage rooms and sheds until I could find a wheelchair with matching parts for a new resident.  Oh well.  When you don’t have insurance you get what you get.  I guess that Mike was actually fortunate to not be dumped in a homeless shelter.  At least there were security fences around the building and a guard at the front door.  The boarded up homes across the street were intimidating to fiancé and cousin Lisa yet they visited anyways.  I sure wish I could have gone to see him too.  I miss my brother.

I look forward to seeing Mike and holding him for a long time when I do.  There is much sadness for all that he has lost.  There is also much anticipation for all that the Lord has in store for him and his fiancé Lisa too.  I believe that the Lord has His hand on him in that Mike’s life was spared.  Just under half of all persons who experience a cerebral vascular accident don’t survive.  Mike’s cognitive abilities and ability to communicate have been spared.  His ability to swallow foods from a regular diet was quickly restored.  In my clinical experience these rarely happen in a person with severe left hemiplegia.  We are all hopeful that his ability to function will improve over time as well.  The rule of thumb is that the most rapid recovery occurs within the first 3-6 months post stroke.  He is six weeks out from his onset date of April 13th and continues to feel new sensations in his affected arm and leg.  And now his next phase of rehabilitation is about to begin bringing new hope for more return of function.  This time I’ll bet at least a quarter that Mike will be very motivated for physical, occupational, and speech therapy!  That will be very good to see indeed.

Until then, please join me in praying for Mike and his fiancé Lisa.  Lisa has a teenage son, Alex, who loves Mike and hasn’t seen him since April.  There’s a golden retriever named Garfield who misses him too.  The new place is closer to their home so I hope all of them will get together sometime soon; even dogs are allowed to visit at Marwood!  Oh I am grateful for such blessings.  Yes, there is good news this day with the promise of even more to come.  Thank you Jesus for your enduring grace and mercy.  Go before us, strengthen our faith, bring healing to our dear Michael for your glory Lord.  In Jesus’ name.  Amen.

Michael George Lech
Michael George Lech

 

Some things remain a mystery, some not.

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An instant later, both Professor Waxman, and his time machine are obliterated, leaving the cold-blooded / warm-blooded dinosaur debate still unresolved.
An instant later, both Professor Waxman, and his time machine are obliterated, leaving the cold-blooded / warm-blooded dinosaur debate still unresolved.

Today I am recovering from a terrible setback.  Turns out the herbal remedy from New Zealand with promising research is horrible for me in my battle with Candida Enteritis.  Will go back to my gentler protocol while I await results from testing that I will submit this week.  Thereafter I will schedule with a new clinic and in many ways, start over.

Sometimes, the dinosaur wins.