What did you learn today?

And let ours also learn to maintain good works for necessary uses, that they be not unfruitful.  Titus 3:14

I learned today that it pays to take good notes.  When I had to replace a healthcare supplier within a few days (or lose my mind!), I was glad to find my notes from the research that I did at the beginning of receiving home infusions 7 months ago.  Perhaps back then I should have gone with that other company instead?  Oh well.  I got to work with their Patient Care Coordinator this time and she is wonderful!

I learned this past week how being off from work and  having less income has helped me to find inexpensive continuing education credits that I never knew existed before I got sick.  Looks like NINE of the TWELVE hours required will be FREE!  Yeah God!  I will be able to keep my occupational therapy license one more year!

OT, occupational therapy, occupational therapist, work, medical leave, disability, license, licensure, renewal

I learned this past month a deeper definition of true love as demonstrated in the life of my husband, Steve.  First some background:  we had to cancel a trip to see his family this past summer when his dad was in too much back pain to travel cross-country to our rendezvous point in Branson, Missouri.  His mom was disappointed that the celebration of her 80th birthday was postponed until Thanksgiving.  Then our trip to meet up with his family in Texas in November got cancelled when I landed in the Emergency Room five days before departure with severe back pain.   I wasn’t even able to go out to dinner with Steve on Thanksgiving (which means I missed celebrating our wedding anniversary on the same day!).  As you saw from my last blog, Steve’s response was simply that we were, “saving money left and right!”  Well, yes and well, no.  His parents are aging.  Visiting them at their home in California is complicated due to my extreme sensitivities.  Perhaps Steve will be making a visit early next year and when my health is more stable.  In the meantime he just continues to be a wonderful loving husband.  I am so grateful for his love and devotion.  Often he is my “Jesus with skin on.”

I learned this past year the meaning of the phrase Carpe diem.  Each little trip, each tender moment between Steve and I, each time the garden got watered or weeds got pulled were realizations of moments when I could do a little more.  The numerous moments that were quite opposite just made “seizing the day,” more special.  We have learned to be more spontaneous to enjoy the good graces of the Lord even when they last but an hour or two.  Carpe diem baby!

I learned these past 5 years of serious illness to call upon the Lord for everything.

Proverbs 3:5-6 New International Version (NIV)

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will make your paths straight.

Whether it’s finding the money for medical treatments or getting myself up to go to the bathroom when seizing, my Lord and Savior cares for the details of my life and gets it done.  He is there when I am awake in the middle of the night.  He provided that relic airplane for me to sit under on a sweltering summer day so my husband could fulfill a dream at Oshkosh.  My Jesus will be joining us in celebration when I become well again someday too.

And lastly, I have loved learning the value of writing Hope Beyond.  It’s not quite an online journal but a way of looking from the inside out.  I hope to point you, precious Gentle Reader, to more than the saga of my situation but to the glory that awaits both of us when we place our trust in the Lord, Jesus Christ.  As Steve and I say in our Christmas letter this year:

No matter what our perspective may be, the most important view at Christmas (or anytime) is the one that brings us closer to the person of Jesus Christ. We stand in awe of His sacrifice for us that brings unspeakable joy, knowing Him as Lord and Savior over all.  He loves His own more than words can say:  the best Christmas gift of all.

Going beyond our temporal learning to the eternal love of Christ can be our gift today, next month, next year, 5 years from now, and beyond.

Gentle Reader, what do you say that you have learned?  Please let me know, k?  JJ

lake, couple, Christian, Lake Winnebago, Oshkosh, marriage

 

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Gratitude for the little big things

So it’s Thanksgiving and nothing went as we had hoped: our trip to Texas to be with my hubby’s family got cancelled after my recent ER visit with severe back pain, alternate plans never materialized, and we had to cancel dinner reservations for tonight due to seizure spikes for most of the afternoon. Today is our wedding anniversary too. When I apologized for wreaking havoc on my hubby’s holiday, his response was, “well we’re saving money left and right!” And now you see who I am so thankful for this holiday.

I love you Steve.  Happy anniversary!

And Godspeed Gentle Readerfb_img_1480031316027. :J

It’s Legal: CBD Oil is Here to Stay

A couple of years ago, I ordered my first bottle of CBD oil from Bluebird Botanicals.  My hope is that it would take away the seizure attacks that I experienced on a daily basis as part of a serious and complex illness.  The preliminary research showed that CBD oil made from industrial hemp would be legal for me to purchase in Indiana, was effective for intractable seizure disorders affecting children, and would bear few if any side effects.

I tried it.  I slowly increased my dose over the next 3 weeks to the level indicated in the testimonies and research that I had found online.  Then things went terribly wrong.  I started to have frightful nightmares.  They increased in vividness and horror then were joined by waking night terrors.  These are the kind that don’t stop when you wake up!  I was scared to continue.  I backed down my dose, took a break, re-started and nothing seemed to bring relief.  The benefits of halting or preventing seizure attacks did not outweigh these horrible side effects.  Eventually I abandoned CBD oil altogether.

While medical marijuana has Cannabidiol (CBD) as an ingredient, you don’t need to live in a State where medical marijuana is legal to obtain CBD oil by itself.  Medical marijuana also contains THC which is a schedule 1 controlled substance in the United States.  CBD oil from industrial hemp only contains .3% THC.  This allows sale of pure CBD oil in all 50 States.  For me the .3% was still too much.  I would later understand that I don’t even have a genetic disposition in my opiate receptors to explain my hypersensitivity to THC.  Heck, I smoked pot occasionally as a young adult without any ill effects.  There would simply be no explanation for my intolerance of legal CBD oil from industrial hemp.

industrial, hemp, CBD, oil, seizures, convulsions, benefits, legal, legalize, Lyme, tremors, tics

Flash forward 3 years.  I became acquainted with a company who manufactured pharmaceutical grade liposomal products.  When they introduced a CBD oil product made from industrial hemp, I decided to try it again.  I still suffered from daily convulsive episodes although the number of hours lost per day to them had decreased after beginning IV antibiotics for chronic Lyme disease.  Seizures, tics of organic origin, non-epileptic seizures (or whatever you want to call them) were a definite neurological complication of latent Lyme disease.  The episodes were less per day but not gone.  I ordered a bottle.

I did not get past a single dose of the new product before suffering another waking night terror incident.  Dang!  The only difference this time was that the superior liposomal nanoparticle size delivered the CBD more quickly to my brain than the Bluebird Botanicals product — and for me that was not good.  I returned the bottle to the healthcare professional from whom I had ordered it.  And then I waited.  There would be no other compelling rescue remedies to reduce my suffering when the nightly episodes came.  No doctor would order medication for me to even try; I have been to the Emergency Room 10 times over these past 4 1/2 years because of wretched convulsions!  Even over-the-counter Benedryl would leave me unable to function very well the next day if it did stop them (and render me too sleepy to care about anything the next day).  A few herbal antibacterial supplements offered temporary relief on occasion and the reason for that will be another blog post about Small Intestinal Bacterial Overgrowth (SIBO).  Neurotransmitters and hormones that can give rise to seizures are manufactured in the gut dontcha know . . .

I learned that one of the better manufacturers of CBD oil was preparing to introduce a THC-free CBD oil so I contacted the owner.  I leveraged everything and asked to try a beta version of their new product.  Within 2 weeks the bottle arrived in the mail.  It took around 15 drops to get a significant response:  their THC-free CBD oil definitely helped reduce the intensity and duration of the nightly seizure attacks.  Yeah God!  This benefit happened even when herxing (or reacting) to a new antibiotic used in the treatment of SIBO.  Some relief came at last!  I am optimistic for the benefits that I might receive when the first round of antibiotics for the treatment of SIBO are completed in 5 more days.  Perhaps healing my gut will help everything as well.  In the meantime I have contacted the owner again to see if I might obtain additional product; my hope is to transition from using it as a rescue remedy to having enough for regular dosing that can help prevent the episodes altogether.  I may need to switch brands to get this accomplished.  We’ll see.

CBD oil is legal for purchase in all 50 States of the USA.  If you are frustrated with noxious symptoms especially tics, seizures, pain, depression, or anxiety, there may be hope in the use of CBD oil from industrial hemp.  Please do significant research on the track record of the manufacturer, look for independent lab testing of purity/potentency/concentration of active ingredients and absence of unnecessary fillers before making your purchase, especially if online.  Very likely you will not find a superior product at your local health food store as hemp seeds and hemp oil contain too low a concentration of CBD to make much difference for a serious health condition.  Here is one brand that is available only from healthcare practitioners nation-wide:  Colorado Hemp Oil.  And this website has some good general information although note that it used to be funded by a manufacturer of industrial hemp products:  Project CBD.  I am not sure of its current status.

This is my story and I’m sticking to it!  I am not an expert by any means just a gal trying to find some relief in an ethical, legal, and medically sound manner.  Feel free to share pertinent information below.  Please don’t try to sell me anything!

Take care, JJ

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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

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!