Bacon as a way of life

So my beloved says to me, “look at how far you have come,” related to my diet.  Indeed.  When we first met I was eating gluten-free, low sugar and fat, largely organic, and sweetener-free, and dairy-free foods.  I cooked a lot and was very particular what I ate at restaurants, often bringing my own nuts or dressings.  Supplements?  Yeah, in due time with my new doctor at the helm my pill box burgeoned to over 60 doses of something per day!  Then part of the story got crazier . . .

As severe illness set in, the supplements would change and almost disappear as time went on.  I could not tolerate any supplements at all after a brief hiatus required during overnight testing at the Epilepsy Center, University of Indianapolis Methodist Hospital.  By then I had added a low oxalate and Candida diet too.  After A YEAR on all of this with daily bone broth too, my brain fog cleared and my gut started to heal.  They say that 95% of your immune system is in your gut.  Perhaps part of your brain health is there as well?  (Now that last part could lend itself to some embarrassing teasing if I stay here too long.  Let’s move on!)

When dental pain increased, my nutritional sustenance all went into the VitaMix for about 6 weeks.  I became the master of the pureed diet and many soups, sauces, smoothies, etc.  My gut health slowed yet the convulsive episodes triggered by chewing diminished.   Gradually I got back to a chopped diet which is where I remain, 4 weeks post surgery for the extraction of two root-canaled teeth.  Healing continues.  It is wonderful to be able to chew better!

Then the convulsive episodes that had diminished some returned to their prior level:  2 to 5 hours per day.  So sad.  Over three years into this time of serious illness and still no one has figured out how to stop them.  I fasted for 24-hours, drinking only water and praying when my brain cells fired in the right direction.  The episodes stopped.  As intense hunger pangs overtook my weakness I decided to break the fast with an apple:  easy to digest and surely a boost to my low blood sugar.  I did not expect what followed.  One of the most violent types of convulsive episodes started my beloved hubby out of a sound sleep and sent me into an enlightened frenzy.  Enlightened?  Yes, this episode was triggered by glucose!

That night and the days thereafter I quickly ventured into a ketogenic diet.  I found a couple of Facebook Groups on the subject and the App they recommended to get me started.  A few days into the new direction a gal from one of the groups contacted me to clarify something:  was I using the diet for weight loss or medical reasons?  The grams of protein/carbohydrates/fats or “macros” are different with each type of ketogenic diet.  For both programs a person consumes very little carb grams yet for weight loss you eat more protein than fat; for medical ketosis to occur you must focus on more fats than proteins.  But it is in consuming very little carbs (I eventually got to 21 total grams) that the body is forced to utilize fats for energy instead of carbs.  The body then produces ketones that can often be picked up in a simple urine stick test or special blood glucose meter that includes ketones.  Ketones are hypothesized to stop or reduce seizures and may even help treat dementia in the elderly.

This week I reached ketosis.  My breath got bad and another tell-tale symptom appeared that is too much for even the transparency of this blog post!  It took me three weeks to get here and it could take a minimum of 2 months, usually 4-6 months, to see if the ketogenic diet will help me at all.  I am willing to try.  Heck, I already have a very restricted diet anyways.  And who doesn’t like (uncured, unsmoked) bacon?  The MyFitnessPal App is a gift from the Lord in managing this.  I would recommend it and their Facebook to everyone on a diet where a person must track macros.

So how about the blessings in all of this?  Surely there were some?  Indeed Gentle Reader.  You know me well!  You see I researched the ketogenic diet two years ago and periodically thereafter but could not find a local neurologist or dietician to guide me.  Close medical oversight including lab tests every three months are needed in addition to the periodic self-monitoring via urine or blood sticks.  Help has arrived just at the right time.  Briefly, check this out:

My first week venturing into the food plan, the gal who messaged me off Facebook just happened to be a retired nurse from the neurosurgery center at John Hopkins Hospital in Baltimore.  She manages her own true epilepsy in part with this diet.  Did you know that the only medical center in the USA with a dietary research and treatment center for adults with epilepsy is at John Hopkins?  I knew that and was ecstatic to spend that first Saturday night receiving mentoring from my “guardian angel” named Vicki.  Thank you Lord!

Around this same time I researched a foundation known to assist children with true epilepsy.  Maybe they would have some new information?  Oh yeah, a medical center close to our home in a smaller town had just hired a dietician to work with children and adults in all aspects of the ketogenic diet.  She had recently attended a conference with the Charlie Foundation and was added to their list of practitioners the week before!  She manages all of the referrals, orders for lab tests, and consultations.  And Mary is very sweet to boot.  Wow, Lord.

In many ways, in many long and exhaustingly arduous ways, this new treatment direction could be one more  bunny trail in the quest to recover from this wretched illness.  O.k.  Poor me baby.  Well then again, maybe not.  Sometimes you have to do more than one task to completely recover from a serious illness.  Remember the phrase, “recovery is a jagged line?”  The Ann Landers column about life being about the journey and not the destination?  The gratitude I feel in my heart for having met you Gentle Reader?  All of the computer skills I have learned about everything from ecommerce to social media?  The deepening of my relationship with Christ?  The revelation of the Godly character of my beloved husband?  And the fact that I did not die in all of those near-death experiences?  On this day I must say that I have seen the faithfulness and blessing of the Lord at some level every single day of the past 3 1/2 years.  His promises have seen me through and rung true every single day.  I will leave you with my fav promise from another time in my life of refining fire (and a side of bacon too please, crispy as in nearly burnt.  I like it that way!)  Take care, JJ

Jeremiah 29 11, Jeremiah, hope and a future, hope, plans, trust in the Lord, Christian hope, encouragin scripture, faith, ketogenic diet, chronic ilness, Christain and disability, Hope Beyond, Julie Horney
Jeremiah 29:11

It’s all I can do

Focusing on breathing today.  It’s all I can do.  The stress level is high as Steve and I anticipate travelling out of State to see my brother tomorrow.  Gratefully I report that it appears he is stabilizing after having had a severe stroke this past weekend.  My own struggles with illness and daily seizure-like episodes continues.  A new treatment for me didn’t pan out too well, increasing the severity of the post-treatment episode.  Oh well.  The Lord goes before me and all of us as we call upon His mighty name:  Abba Father!

Lord I need you now.

We got this.  Philippians 4:13

 

I submit Mike's left-sided weakness to the Lord who strengthens us all.
I submit Mike’s left-sided weakness to the Lord who strengthens us all.

 

 

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