Recovery is a jagged line

Today my words came back to me.  My beloved Steve was comforting with his encouragement that there can be many setbacks even when on the road to recovery.  Ah yes.  The old, “recovery is a jagged line” speech.  I have let those words fly many times when working with my patients as an occupational therapist.  There was the cardiac patient who was frustrated with having to restrict his activity level to basically mope-ing around the house for his first week home from the hospital.  I also recall a lady practically quarantined in a back bedroom of her home with a great view of the surrounding woodlands.  She had a portable refrigerator, phone, laptop, accessible bathroom, hospital bed, wheelchair, walker and many conveniences to help her recover from a knee replacement surgery.  I had to encourage her to push up her jagged line a bit lest she become too comfortable in her hospital room at home!

occupational_therapy_no_limitsOne of the many reasons I enjoyed working in home health care was the ability to use the person’s real-life situations, supplies, and responsibilities as part of his or her occupational therapy.  The role of an O.T. is to evaluate the daily activities of an individual and the skills needed to complete those activities.  When there is a breakdown due to an illness, surgery, mental health problem, developmental delay, disability, or disease process, the O.T. works with the patient and his or her resources to restore function.  I was always amazed at how “resourceful” some patients could be!  I think the farmers were the best.  I’ll never forget the industrious wife of a patient suffering after several failed back surgeries.  The lady of the house had built from scrap wood a rolling cart with a seat on top and rope attached to move it along the floors in her home.  What was she moving?  Well her husband of course!  He was eligible for a wheelchair rental but evidently the subject never came up.  I don’t think they even wanted one when it became available.  The downside:  the gentleman would not likely become independent in household mobility and related activities when sitting on a cart that had to be pulled by others.  Recovery is sometimes a flat line too:  no true recovery at all.

As for me, the recovery is moving forward.  I am 12 days into using high CBD hemp oil to attempt to control daily seizure-like tic episodes.  Today I had a setback for about 2 hours but at least the episode was low grade without a severe neck headache or pain.  And when night time rolled around to my bewitching hours of 9-11:00 p.m. there were pre-tic symptoms and nothing else.  This is the second night in a row with relief!  Every night prior to this and for the past 8 months I have had 2-4 hours of intermittent seizures.  Virtually every day or night for the past 2-1/2 years I have had intermittent waking seizures.   Praise the Lord, the pattern is changing!  At either set intervals or when noxious symptoms start I take a full or partial dose of high CBD hemp oil and get relief.  Nothing has ever done this before!

It’s not like I haven’t prayed, submitted, waited, or tried more diets/supplements/drugs/manual therapies/technologies/chiropractors/testing/remediation than, as they used to say, “Carter has got pills!”  I am actually still preparing to see methylation and biotoxin illness specialists in Michigan later this month.  It is likely that the cause of illness is related more to exposure to biotoxins than Lyme disease.  All that may be clearer sometime down the road.  At this time my husband and I are rejoicing for the relief from our hellish nights.  He just might start getting a full night of sleep before too long!  That is if we don’t stay up for other reasons . . . ;J

If you are curious about high CBD hemp oil then I offer this informational website:  www.mycbdresearch.com  and join the discussion on Facebook at:  www.facebook.com/CBDhempandseizures  There’s hope here for many with seizures and other neurological, intractable health conditions.  For all of us there is one ultimate source of hope that will sustain us whether recovery is a straight, jagged, or invisible line:  a relationship with the Lord, Jesus Christ.  To find Him we only need to get on our knees and open our hearts to His enduring love, His love letters to each of us in the Bible.  I would have never made it this far without my Jesus.  I am humbled and grateful for many aspects of these past 2 1/2 years:  I’m working on accepting the wretched parts.

Meeting you, Gentle Reader, along the way is a sweet gift.  Thank you for being a part of my recovery too.  JJ

Brain Dump and CBD

And so I was right.  That is not necessarily a good thing.

The doctor apologized and gave a couple of reasons why he missed 5 pages of an 8-page lab report completed 6 months ago.  We had reviewed the results 3 months ago or rather, the first 3 pages of the report!  As it turns out, the last time this particular set of labs was completed over a year ago, the last 5 pages were missing then as well.  So what is the significance?  Those last 5 pages contain information about daily cycles of two hormones that could explain my ravenous, violent seizure-like episodes in the early morning and evening.  Treatment related to those findings could have alleviated my tremendous suffering for the past 6 months!  However, the doc had nothing to say about that.  He said he actually needs to do more research on how to lower melatonin levels!  Well thank you but I have heard this before from you . . .

My next concern was the potential role of a new herbal remedy I started on the lab finding of severely elevated melatonin.  Looks like there are two compelling research articles stating that the active ingredient in what I am taking has not been shown to elevate melatonin levels.  Whew!  Looking closely resulted in seeing how the active ingredient may actually modulate the inactive ingredients that have an effect on melatonin.  Since this active ingredient has served to modulate one particular trace substance when the latter is in higher concentrations, well, that gives me hope.  The answer to the question of how to lower melatonin might already be in my cupboard!

Here’s what “it” is:  high CBD hemp oil.  This is not medical marijuana nor an oil made from the psychoactive ingredient:  THC.  That would be illegal in my State and actually not necessary to impact seizure-like activity.  Both CBD and THC-laden products are from a cannibus plant yet the plants grown for high CBD oil and their products are legal in all 50 of the United States.  No special procedures are needed to obtain it:  just sort through a plethora of information online to find a pure product with concentrations high enough (pun intended) to affect health.  (You cannot get high from CDB oil by the way.)  And the benefits are tremendous:  intractable epilepsy, diabetes, multiple sclerosis and many more.  Add THC and the list of therapeutic effects increases to include cancer.  Thankfully for me the active ingredient needed to reduce seizures is CBD with only trace amounts of other “cannabinoids.”

Here’s a great place to find an overview of hemp oil, cannabis, how its administered, and the benefits:  www.mycbdresearch.com

The first week experimenting with CBD oil has yielded 3 days with less than an hour of seizure-like activity.  This is a HUGE improvement over the average of 3 hours per day of seizures for EIGHT STRAIGHT MONTHS and the 1-3 hours per day overall for the past TWO  YEARS!  At least once per month the duration increased to 6-12 hours.  Whew again.  I am encouraged.  I have trusted the Lord throughout my research process and even in deciding which product to try.  Receiving the melatonin lab results today may be a confirmation of this decision.  The timing of this situation coming together is very interesting indeed.

Doc did have one idea:  resume using my bright light therapy for 30-60 seconds, multiple times per day to naturally lower melatonin levels.  Cool beans.  You know the old saying, “do what you can, with what you have, where you are.”  Another one goes, “here we go again!” with what could be yet another false start to healing.  Somehow I have a feeling this one will make a lasting impression.  Stay tuned.  I am going to get well!  :J

Addendum:  just opened a new Facebook page entitled, “Seizure Free Zone.”  Like us and join the discussion today!