Tag: chronic illness

The way it should be

Published on by Jesus is for the WoundedLeave a comment

We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”

I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way.  The cleaning got done at 3 o’clock Monday morning!

The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.

One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.

Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.

Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.

My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off.  He never does that.  I benefitted tremendously.

The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them.  My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.

The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home.  My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.

Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.

I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it.  Someone named “John” supposedly signed for it but it was never found.  They reimbursed me for both the check and the “stop payment” fee.

I could go on . . .

If there is anything that I have learned over these 5 years of illness is that things are never as they should be.  Well actually I knew that long before 2011 from my work with PEOPLE in healthcare.  Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes.  In the end it’s not about the individuals really.  It’s about where I am placing my trust.

A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.”  Yes indeed.  Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ.  We are to love everyone else as unto the Lord.  Only He will never forsake us, never fail us, and deliver right on time every time. 

Alrighty then.  This rant is now over.  It is just before sunrise and my nurse will be here in a few hours to administer my care.  I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts.  Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways.  I will trust that the Lord’s will will be served once again.  So before I stop making any sense at all, I will end here.

It’s probably the way it should be?  JJ

 

← Back

Thank you for your response. ✨

Starting Over

Published on by Jesus is for the WoundedLeave a comment

Start today and create a new ending

Might be my mantra on this date:

My calendar awash with the death of my phone

Leaving empty spaces in the blocks that measured time.

Oh how I valued my days, my worth by that thingy

When asked to justify this or that,

I could find the day/the hour when the lost hope began

From another closed door once opened with promise, no less.

(Oh why cannot I recall the goodies lain in there too?)

So many files on paper or electronic memory stored away

In my weighty storage that marks thy years, thy self

Perhaps defining who I was over the decades

Including these five years of hell that came to roost.

“But what if I forget?” was be my byline to save

The records of divorce, of deaths, of expertise, of treatments once lived . . .

I suppose I collected hoping to arise somehow better

And yet somehow as my receptacles filled my person emptied too.

Perhaps now is the time to infill on the inside

Not in a black metal coffin with folders numbered by letter

But by character and trust:

That the Holy Spirit within me holds it all in order anyways.

He knows what I will need, where the important things are in His care

When I draw on my Lord’s infinity —

Not the confines of my mind or spaces

Lest I limit my future by my past by carrying too many things.

Yes, let the purging begin.

Let the trusting run faster and freely.

Let the light of hope return even in the faintest of twilight.

Let me start over with a new ending:  this time Divine.  JJ

*****************

Gentle Reader:  This day for us both “I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in his holy people, and his incomparably great power for us who believe.” Ephesians 1:17-19Niagra Falls, Buffalo, Canadian, falls, rainbow, trusting God

 

Keep your eye on the ball

Published on by Jesus is for the WoundedLeave a comment

I remember hearing this advice when being introduced to softball as a girl.  It didn’t help my game much then but it does now!

Navigating the healthcare system when battling a serious illness requires patience, persistence, and push. (Now that motto DID help me when swimming my 1/2 miler!)  You are your own case manager, not your Doctor.  Getting this fact into perspective quickly was required for me to endure nearly five years of a long and winding road that first appeared to lead to no where.  I am still sick but some things are markedly better.  More about that fills the pages of this blog.  Now back to the brain dump that comprises the topic at hand . . .

  • Getting labs written and drawn for treatment coordinated between 3 healthcare providers and their respective offices has required hours of work this past week.  At this time we are good to go for everything to come together tomorrow.  It is no small matter to have to drive to my primary Doctor’s medical office to obtain the corrected piece of paper then scan and email it to the office of my home infusion nurse.  (Two phone calls confirmed that an incomplete copy was faxed to her agency 2 days ago.)  These results will be valuable for my appointment with the naturopath in about 3 weeks via Skype.  Gotter done.
  • Researching a new theory about a latent infection that may be contributing to this illness has become a new project.  I will allow several weeks for all parties to review my report and, if appropriate, order, interpret, and advise on the laboratory testing that would follow.  This process should take over a month.  Meanwhile the wretched illness continues.  Gotter started.
  • Adjustments in my treatment protocol above the core prescriptions, occur on nearly a daily basis led by what I can tolerate at any given time.  Detox remedies get rotated and new treatments that are prescribed take weeks to fine tune, if tolerated at all.  Beginning a new treatment often takes several weeks by the time I find it either online, order it from one of 3 compounding pharmacies (locally and across the country), correct mistakes made about 20% of the time, and find the best timing to work with the rest of my treatment plan.  Prayer helps a lot.  Just started something that I ordered almost 3 weeks ago.  Parts 2 and 3 are still pending.  Oh well.  Gotter in.
  • Not all the testing that is recommended needs to be done RIGHT NOW.  After hearing back rather quickly from my naturopath about my concern that I might be dealing with a latent toxoplasmosis infection, he recommended 2 new lab tests.  One would cost over $900 out of pocket and the other would likely be covered by insurance; both cover important yet different aspects of my care.  But hey, if we figure out what infection is causing my symptoms and kill it then I won’t need to know how it is affecting trafficking of various neurotransmitters.  The problem will already be solved!  I made the decision; the next steps are in play including copying my primary Doctor on everything.  (His email system failed so I drove my report to the office today.)  Getting her moving forward.
  • Behind the scenes, the ordering, billing, organizing, preparing, and administration of IV infusions-with-related-supplies continues.  I had a question after reviewing the mighty bill from my home infusion company.  I thought they may have over-billed me 15.75 hours at the cost of $945 (which equals the cost of 2 weeks of nursing care!).  They billed me one way at the Start of Care and another way the subsequent weeks.  Over the course of 2 weeks of various chats with my home infusion nurse and 3 staff at the agency, it turns out that we both misinterpreted our initial  agreement:  the written contracts have blank spaces.  They have chosen to bill me at a lesser rate given that their billing methods changed in January of this year and prior to my Start of Care with them.  The savings to me and my husband will be substantial.  Gotter blessing!
  • Sometimes supplies get sent with errors.  This happened twice this past week.  Gratefully I have come to trust the overall process and not worry about some delays too much.  In one example, it actually hurt less to use a smaller gauge Huber needle to access my port when it was sent by accident.  The infusion did not take that much longer so my nurse and I agreed to continue using the one sent by mistake.  We tried this in the beginning and did not have this good of a result.  Flash forward 3 months.  Yellow is my new color instead of white or red!  Gotter figured out!
  • So who is minding the hen house?  All of these exhausting details?  This serious illness I am battling includes chronic Lyme disease but who is tracking my progress after 6 months of IV infusions of antibiotics?  The last appointment with my LLMD focused on other labs instead of ones related to the co-infections of Lyme disease.  Geez oh man!  I should be ready to focus on the co-infections Lyme by now since there is still one major problem to solve:  the convulsive episodes at night and in the morning have not stopped yet.  WHO CARES ABOUT THE OTHER LABS?  The LLMD says that the updated and gold standard, Igenex lab results have not come into their office yet.  Alright so we wait.  Then as I was checking out with the nurse after my appointment my LLMD handed me a piece of paper upon which was written the name and brand name of an herbal tincture to add next for Babesia (a co-infection).  He says it will help with the symptom of night sweats and yes he put it on my clinical report sometime after he had left the room.  I guess I will figure out where to order it from, the dosing, and the schedule.  No problemmo.  Got this one in the bag so to speak like so many others.

Surely I am a “problem child” of sorts for some of my healthcare practitioners.  My condition, orders, and treatment are not written verbatim in any text book.  Is that not the joy and challenge of practicing medicine?  Especially when your client is paying you CASH?  An informed patient partnering in her care is your best patient, right?  I try to be nice about everything and express gratitude for their care.  However it is with respect that I say in my heart that dear practitioner, ultimately “you are not the one in charge of my care.”  My Jesus is!  And under His guidance, I am!  My husband and spiritual leader has much to say in this journey as well!  We are in this together for better, for worse right?  Indeed!

Know what I mean Gentle Reader?  Have you ever gotten a little crazy managing the details of your care or the care of a loved one?  Even the insurance company who holds the purse strings of coverage for services rendered are not in charge of what happens to each of us. Thank goodness as I have to deal with 2 of them!  So for those in Christ Jesus, in the end finding the best care, the best outcomes require us keeping our eye on the ball as unto the Lord and His will for our lives.

Perhaps that bears repeating, IMHO:

The best care requires us keeping our eye on the ball as unto the Lord and His will for our lives.

Maybe a new title is in order here:  Keep your eye on the Lord.  Always.  As it says in Psalm 55:22:

Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken.

I believe it is the Lord who gave me the ability to search, to research, to write, to endure, to overcome the trials he has ordained in my life for His glory, for my highest good.  Lord willing together we are getting it done well.  What do you think?   JJ

1 Peter 4:13, glory, Lord, trials, overcomer, trust, endurance, fiery

 

 

From one mystery to another

Published on by Jesus is for the Wounded1 Comment

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)

8 “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)

2 My brethren, count it all joy when you fall into various trials, 3 knowing that the testing of your faith produces patience. 4 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

 

The Missing Needle Nose Pliers

Published on by Jesus is for the WoundedLeave a comment

 flat nose pliers, jewelry making, o ring, jump ring, making jewelry

Husband asks:   Where are my needle nose pliers?

Wife answers after a long pause:  I might have sent them to Minnesota . . .

And then another looooooong pause follows with:  silence!

Sometimes the logic of the moment doesn’t make sense to anyone else but oneself.  Know what I mean?  Hey, I was selling my jewelry business this past Fall and wanted to send along all of the tools that the new owner would need.  I noted that there was a nicer pair of pliers in the tool cabinet so surely hubby-dear would agree that I should make my customer happy to have both pairs needed to successfully open and close jump rings?  Besides, I did ask him about it didn’t I?  He did not remember me asking him.  I did not remember it exactly either.  Well DeeAnn in Minnesota is happily making jewelry and that’s all that counts, right?

Well maybe not.  Within a day I made sure that we picked up for my beloved, a nicer Stanley-branded pair with ergonomic, non-slip grips at Walmart.  Win!  Win?

We employed a similar rationale four years ago when I never really recovered from acute hepatitis.  For more on that story, see the About Julie page here.  It seemed the right thing to do to use an alternative technology to treat Lyme disease when a trial of antibiotics left me wretchedly ill.  Sadly, the Beam Ray Rife machine hurt me, sending me into a tailspin.  There would be no easy solution(s) to this complication.  I developed seizure attack episodes within 3 weeks of running very short programs on the unit which exposed me to various frequencies of light and sound waves.  A dozen or more local folks using their own machines noted benefits.  I did not.  I sold it about 1 1/2 years later with a net loss of $1500 and what has become 4 years of daily convulsive episodes.  This weekend there have been 3 major and several minor wretched episodes within the last 24 hours.  Lord have mercy!

Beam Ray, Rife, sound, light, wavelength, alternative medicine, Ray Rife, Lyme disease
Beam Ray Rife machine

 

As you can read in the link noted above, we have tried many different kinds of valid treatments coached by skilled practitioners.  I have benefitted from taking down mold exposures and illness, mercury toxicity, Candida, parasites, and the extraction of 2 root-canaled teeth.  Even so I feel like a beaten puppy!  But now we know that they very likely are related to Chronic Lyme Disease requiring the use of powerful doses of IV antibiotics for many months.  Seven weeks into the treatment I can tell you that there are some positive changes.  Unfortunately I am having complications from the weekly IV infusions so later this week I will have a port surgically placed in my chest wall.  This becomes a direct-access site without the need for sterile dressings that irritate my skin or superficial phlebitis that has plagued my forearms for about 3 weeks.  (Thank the Lord that I discovered horse chestnut gel when the warm compresses did not help.)  I am also hoping there won’t be any more violent episodes with the treatments. Even intramuscular injections have been exceedingly difficult.  Whew!

So there ya go.  A funny story, an update, and a little hope beyond the saga of late.  Lord willing, I am going to get well!  And when I do I might just get out my own tools here in Indiana, not Minnesota, for digging in the garden.  By the way, Spring weather is forecasted for this week .  Since I won’t be tethered to an IV line I can safely get a little dirt underneath my fingernails if I am up to it before the surgical procedure on Thursday.  The garden pup is ready.  You could say that I’ve traded the needle nosed pliers for an aluminum shovel!  So let’s get to it . . .

I wonder how those carrots are doing that got left in the ground last fall?  Having a little extra time in the soil should make them as sweet as candy by now dontcha know?  :JJ

life began in a garden