Coming out of the fog

I just might be coming out of the fog

As I hit the 5 year mark of shroudedness

When some bugs in greenish water back then

Everyday put me under severe, daily duress.

I could sell you a book of

Five hundred blogs and two links

With tales of woe then and now that’ve

Filled webpages as I tried to keep on my “think.”

This forum here, now with you this Autumn night

Kept me sane so the cells in my brain did not go to mush;

While firing wacky-backwards without ceasing at times

For waaaaaay toooo long without hope of a rest with a cush.

Looking back, looking forward

And thinking it over some more,

I see da light coming through darkness:

The kind that stays and covers all.

Tis healing that’s on the brink to stay

If I but finish the course with everything

It takes what it takes and it ain’t over they say

And they’re right, “until the fat lady sings!”

Now I ain’t too fat or that big into musical things

There’s more dirt under my fingernails than bylines

Bits o’ gardening, sewing, medical cooking fills the

Hours not counting Heparin and saline syringes.

No matter anyways, anyhoo, anyhow

It’s just the way it went, the road less travelled by

I will be stronger for it in the end they say (and they know)

In due time, Gentle Reader, with the Lord we’ll one day know why.

JJ

Julie Horney, Lyme disease, get well, recovery, healing, gratitude, end of the road, end of the journey, smiling, woman, park, Rogers-Lakewood
Resting with mask in hand by a scummy lake here in Indiana!

 

 

 

 

 

 

From one mystery to another

Just when you think you’ve finally gotten on the road to something good the path can be blasted with a tempest beast of a hurricane, sending you smashing to the ground without a life preserver or anchor!  But do not despair.  The Lord Jesus Christ is still on the throne precious one.

Isaiah 55:8 New King James Version (NKJV)

“For My thoughts are not your thoughts,
Nor are your ways My ways,” says the Lord.

The close of our evening in the wee hours of the morning was exceedingly traumatic, puzzling, and desperate.  This sure is a mystery given that I have had some better blocks of a few hours at-a-time now that I am 3 months into IV treatments with antibiotics for chronic Lyme disease.  Even an iodine protocol and infrared sauna treatments appear to be promising adjuncts to my treatment plan.  Ahhhh, so much progress has been made these past 4 1/2 years yet still there are plenty of wacky lab findings:  we’re talking dangerously low amounts of key nutrients,  hormones, and healthy gut bacteria.  Yet I have less pain some days, improved clarity of thought, and an ability to do some housework or gardening about once per week.  The days largely spent bedbound have diminished from 4 to 1!  And my score on a chronic Lyme symptom scale has gone down from 73 to 46.  These are good!

James 1:2-4New King James Version (NKJV)

My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing.

Some call setbacks that occur over a course of treatment “herxheimer” reactions.  I call them a “healing crisis.”  That is, until the particular breed of hell is so traumatic that extra healing is needed from the crisis itself on top of the serious illness.  I’m talking about seizure attacks marked with screaming at the top of my lungs.  Let’s add writhing movements lifting me off the bed as if embodied by a demon and intense, hysterical episodes of wailing with gushes of tears.  What the heck is going on here?  Flashes of terrifying scenes fill my “mind’s eye” alternating with the blackest darkness you can imagine.  I press into the abyss with cries out to my beloved “Jesus” when I can, when I my mind allows me to do so.  He is my only hope.  Prayer mixes with shock.  Breathing, prevention of injury, and concern for my hubby nearby fill any cracks in my thought processes when they return.  Steve and I both leave the scene broken when the hell finally stops (tonight after over an hour had punched its way by us).

This all means that chronic/neuro Lyme disease is in my central nervous system and brain.  This probably means that the treatments are now changing my neurochemistry and affecting the structures of my mind.  This definitely confirms my worst fear that the path out of this hell to healing will be worse than the journey that got me here.  So wretchedly sad.  I guess I’ll just pray that the Lord strengthens me and Steve to get through it, pleading for mercy as we did tonight.  Somewhere out there will be a message to inspire others yet again tonight that is not the case.  This is a murderous mystery, killing every sense of sanity and magnifying many senses of suffering.  I am o.k. in this moment, thankfully.  It’s amazing what I can do sometimes on 2 hours of sleep just before the sunrise.

Psalm 119:147-149New King James Version (NKJV)

147 I rise before the dawning of the morning,
And cry for help;
I hope in Your word.
148 My eyes are awake through the night watches,
That I may meditate on Your word.
149 Hear my voice according to Your lovingkindness;
O Lord, revive me according to Your justice.

Hang with me, Gentle Reader.  We are not giving up.  We still have faith and still have hope.  You don’t give up either with the challenges in your life too, k?  We are holding out with the hope of blissful eternity for those in Jesus Christ and working our way back to the current day from there.  The suffering, the trauma, the horror just makes for a better ending when telling a magnificent story.  And when in my mind’s eye I also see the tear on the cheek of my Lord as He hung dying on a cross for me and you, I know that somehow, supernaturally, I will be delivered to a better place someday.  How about if we meet there?  So much goodness awaits us.  I’ve really got to tell you about the Summerwine bush that is budding from where I transplanted it to my compost pile, ready for its new home this Spring . . .  Someday it will burst forth into bloom (like me) once again!  JJ

summerwine, horticulture therapy, healing garden, healing, plants, deciduous, bushes, ornamental, flowering, blog, hope

 

Into the wintry night a knock cometh at the door

The gals knocked on our front door unexpectedly tonight from the cold of night.  Do you know where the Murphys live, they asked?  We did not but sure noticed the cheerful nature of these young ladies.  Could they share a special Valentine’s Day message with us just the same?  Of course, answered my husband.  What followed was a friendly banter of the differences between the Mormon faith and a Biblical belief in Jesus Christ alone as Lord and Savior of the world.  It was too cold for the chat to go on long and our home is a safe zone for fragrances-n-chemicals so we could not invite them inside.  They understood.  Gratefully, I was able to locate our neighbor’s correct address before they parted which they accepted after my hubby engaged them in a sweet chat of everyone’s hometown.

Later Steve and I prayed for these two.  Certainly their friendliness and encouraging messages were a breath of fresh air on a chilly wintry night in the Midwest.  They were far from home on their 18-month mission trip rite of passage, so to speak, of their Mormon culture.  We hope that they will look beyond their culture and traditions, however, to a saving faith in the Lord, Jesus Christ who brings eternal redemption and joy through the foundational truth found in the Bible.  We find evidence of our faith in verses such as:

Romans 3:23New King James Version (NKJV)

23 for all have sinned and fall short of the glory of God,

1 Timothy 1:15New King James Version (NKJV)

15 This is a faithful saying and worthy of all acceptance, that Christ Jesus came into the world to save sinners,

Romans 5:8New King James Version (NKJV)

But God demonstrates His own love toward us, in that while we were still sinners, Christ died for us.

Romans 6:23New King James Version (NKJV)

23 For the wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord.

John 3:16New King James Version (NKJV)

16 For God so loved the world that He gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life.

In these truths we believe in Him alone as the perfector of our faith, His work on the Cross, and then build the foundation of our faith.  I am proud of Steve for engaging these gals with his personable style and sharing of some key points that we hope they will reflect upon further.  We hope they will find hope in Jesus Christ and not their religion.  In sharing with them, Steve moved beyond standing in frigid temperatures in an open doorway and got into the most serious of conversations with two total strangers rather quickly.  What topic could be more important for a Sunday night chat?

On this Valentine’s Day, I submit to you that the greatest love offering of all was given by our Lord, Jesus Christ when he demonstrated that love through His death and resurrection on the cross at Calvary.  Salvation and eternal life come through Him alone.  May He be glorified for the good that may come for being willing to stand and speak when a knock at the door cometh . . .

Gentle Reader, if you are wondering who God is and how to have a relationship with Him through Jesus Christ alone, please write to me here or comment at the Hope Beyond page on Facebook.  Or just pray this simple prayer and let me know if you do, k?  With love, :JJ

Heavenly Father, I know that I am a sinner and have fallen short in my life.  I am sorry.  I recognize that you are God and came to earth to save me from the ultimate consequences of my sin through Your death and resurrection.  Please forgive me.  Be my Lord and Savior this moment for always.  In Jesus Christ, amen.

cross of jesus

So much to consider

Phil 1:12, Philippians, trials, suffering, endurance, Christian, crisis, long term, illness, chronic, humor, gallows12 But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.”  Phil 1:12

Just as this picture and this scripture present two extremes of perspective for the activities of life, they are united in one theme:  we shall rejoice with Christ as our guide!  Yeah, I know that is a stretch . . . but we do know that the God of the universe has a sense of humor too, right?  I mean he created aardvarks, zebras, and tse tse flies!  What’s up with that?  Oh I know that the Original Adam named them all but just how did he do that?  They were all such weird creatures!  So it follows then that humor can help us endure many kinds of extremes, even the ones you and I are facing today.

Take for another example the thieves that attempted to steal gasoline from an RV.  This is a true story:  instead of tapping off the gas line they ended up tapping off the septic line instead!  When the fluid started flowing it was not fuel it was the polar opposite:  stool!  So sad.  Such a righteous punishment I must admit!  And as a grateful owner of a travel trailer all I can say is:  Tee hee with a smirk.  ;}

I cannot say that I can relate to the paradoxical themes of life with much right now with much lightness of spirit right now, however.  I’ll just keep it simple:  there’s some good and there’s some that is not.

On a good note I am grateful to report a widening of social contacts of late.  I’ve reached out to some old friends and some newer gals have jumped back into my world from my local church.  I appreciate the friends that I’ve met online (and you know who you angels of mercy are) and hope we can extend our fellowship.  All of this is good.  It’s amazing how all believers in Jesus Christ share a common unity even when the circumstances of our lives can be so different.  We all have our daily wants and needs; our Lord cares for the desires of our hearts tenderly and for these we can pray in earnest for one another.

On a less good note, new I.V. antibiotic treatments for chronic Lyme disease are going quite roughly.  Yup, revisiting Lyme since the persistent seizure attacks sure look like the episodes of others dealing with the neurological complications that can happen long after the acute infection has come and gone.  It was 4 years ago that I first started treatment for Lyme when things got sidetracked for treatment of mold and mercury toxicity, dental issues, Candida, parasites, and a possible oxalate burden exacerbating fibromyalgia pain.  Use of a Rife machine brought daily seizure attack episodes and treatment of Candida escalated them from 2 to 5 hours of convulsive episodes per day!  I was bedridden the better part of about 4 days each week this past Spring, Summer, and Fall.  So beginning in January I was started on high doses of IV Rocephin (antibiotic) and I remain sickly but out of bed more of the time.  This treatment coupled with the wintry temperatures below freezing have brought incredible pain.  However, the days that I am up until daybreak every night of the week has cut down; tinnitus, brain fog, and other executive functioning skills are sloooooowly shifting for the good.  Sometimes even the pattern of convulsive episodes shift as well (thank you liposomal melatonin!).  Just maybe these past 4 years have not been wasted after all!  It appears that each new treatment has prepared me for such a time as this:  we just might be able to treat this remaining beastly diagnosis and its co-infections to get well . . .

There is so much to consider.  Will I continue on antibiotics long term?  Will my health insurances help us out or cut us off next week?  Will I be able to get a port to spare my aching skin and forearms from repeated pokes and dressings that trigger more wretched episodes?  When would I transition back to more herbal-with-pharm-grade supplemental interventions?  Will the reactivity to mold and fragrances ever come down or do I have to go live in a pristine environment somewhere for a few months later on to fully detox?  How much more stress can my beloved husband, Steve, be expected to bear?  And how will we pay for all of this?

As the frigid Winter temperatures of the Midwest bring more of a sense of retreat than charging forth into the unknown, we are choosing to press on anyways with my treatment for chronic Lyme disease.  I just wear long underwear everyday to keep warm!  We are starting where we are with a local, Lyme-Literate Medical Doctor who has treated dozens and dozens of cases successfully.  I know that to be true.  I have met many of them when we had a local Lyme disease support group.  I noticed that each of us facing this dreadful disease had chosen a somewhat unique path to his or her recovery based upon the damage the infection caused to our bodies and our individual resources.  (See this link for more info on chronic Lyme.)  Perhaps my case was one of the more severe.  Perhaps the Lord had more than “recovery” in mind when He allowed this serious illness into my life.  There is so much to consider that simply was not on my radar over 4 years ago.

If you have found this blog by way of your own journey through chronic Lyme disease or some other serious illness, know that I am praying for you.  There is hope!  You are not alone, Gentle Reader.  Please comment below and allow me, if you like, to connect you with a larger community of those finding meaning beyond his or her diagnosis.  Our Lord, Jesus Christ, grieves for your suffering, your fear, your broken heartedness.  He sees you and will see you through what you are facing as He has done so for me and Steve.  He loves you more than anyone (including the furry pup above who has found his prize squirrel in the sunshine of a better day).

May we both smile some day in the arms of our Heavenly Father for having connected this day, for His glory.  And, um, when we get our prized prey I’ll just say, “please pass the catsup.”  Squirrel on the Bar-B-Que anyone?  Ewwwwww!  :JJ

The Price of Admission

Garfield2016-01-15

Garfield tells it like it is and that is the way I like life to be as well . . .  No pretense here, ever!  He must be chemically sensitive too?  I digress . . .

To get well from a serious illness, one consistently pursues recovery as if he or she is on a journey, not sprinting as if in a race.  My journey of late has included a trial of molecular hydrogen, nebulizing sea water to ease a chronic sinus infection, and experimenting with a Glutamate-Aspartate Restricted Diet (GARD).  Yeah it’s never just one thingy with me!

Some additional research and a consultation with my Doc suggested a link between the GARD, sinusitis, and latent Lyme disease that might be addressed with a course of antibiotic treatment.  Yes, IV or IM Rocephin may address all three.  Rat studies have shown that Rocephin can lower glutamate levels thus helping to raise seizure threshold.  Since I am a card-carrying lab rat anyways it seemed logical to go for a trial of antibiotics for a week then re-evaluate my tolerance for it during my next Doc appointment in 7 days.  Very likely the treatment will continue for several weeks.  Today was treatment day #1.

I began this process pressing forth to complete a lab test beforehand so as not to skew the results with the upcoming antibiotic.  The preparation required a restricted diet of only 2 foods for 24 hours, fasting, and some stressful sampling procedures all ending just one hour before the first IV treatment at the hospital.  The Lord sustained me as I assembled the kit and wolfed down a supremo salad that I had prepared the night before.  I left our home shortly after the FedEx truck picked up the completed test kit while giving our dog something to bark, bark, bark about.  The wings of my Savior, Jesus Christ carried me to the hospital on just 3 1/2 hours of sleep:  less nervous and ready to blast the heck out of whatever might be keeping me sick.  Let’s do this!

Not so fast though!  Just before heading into the Outpatient Clinic I had a violent expulsion of stool!  Whaaaaat?  Good golly!  Looks like the Lactulose test prep was taking effect all at once!  Now what should I do?  I was soiled through all of the layers of clothing I had worn to keep warm.  Fortunately this all happened in a hospital where they have linens and hospital scrubs available.  Alright so I cleaned up, put on the call light, confided my plight to one of the nurses, changed my fashion motif a bit, and returned to my chaise lounger a little wet, a little shook up from everything.  let’s do this?

The biggest hurdle for me in receiving the 50+ IV treatments and 50+ lab draws I’ve had these past 4 years has always been the needle stick procedure.  Virtually every time a needle either goes in or out it triggers massive convulsive episodes.  Fortunately Jennifer, the RN, has more tricks for poking rolling, spindly veins than anyone I have ever seen for care.  The first stick failed resulting in the usual shakes and shouts.  So we just waited until my world calmed down and I got a few more moments of the best distraction ever under my belt:  HGTV on the little swing-away monitor at my station!  Watching Island Hunters and the like has saved me from tears many times for sure.  (Such a treat!  We don’t have cable service at home.)

Gratefully the second stick was successful.  Gratefully there were no ill effects during the infusion just fatigue.  Gratefully I was able to run an errand to the meat market secretly in wet jeans underneath my scrubs before returning home.  Gratefully the nap came easily after showering and without seizure attacks.  The hell returned later in the evening but overall I got away with at least one fewer episode today.  God is good.  He carries me through so much!

I ask the Lord often why things always have to be so difficult for me?  I really don’t get any answers other than to know that He sees my suffering and promises to love me through it all.  That love is tangible in the graciousness of my beloved husband, Steve, who listens to my stories and sees me through the roughness that characterizes some part of every day.  Perhaps someday I will get to see why the “price of admission” for me to get through my life has been so devastatingly high.  This stuff ain’t for wimps ya know!  In the meantime I will carefully wrap the IV in my arm before showering, clean myself up, run more loads of laundry, and shed some tears along the way.  I am not alone and know what to do.  I have been through IV treatments before and so have many of my fellow sojourners.  We can do this!

At least now there is fresh bacon in the house.  And that Gentle Reader is a mighty good thingy!  I am sure Garfield would agree!  JJ