Do It Sick Chef

And heeeeeere’s an important announcement!

You are invited to join my Hope Beyond Facebook page for the first release of my new video series entitled the

Do It Sick Chef

This soon-to-be published YouTube video series will feature simple meals, meal preparation strategies, kitchen organization tips, and general silliness depicted in real life for persons on special diets recovering from serious illness.  The video will be minimally processed (no-make-up), Non-GMO (nothing fake or poisonous), organic (where possible), grass-fed (when affordable), and filled with an occasional bark from a cute German shepherd in the background.  And if I can convince a foodie friend or two to make me a video for us then they will share the venue too (Sherry, here is your hint, hint!).

Get introduced to foods I know you will love someday like TURNIPS, ghee butter, and frozen vegetables that actually transform into something wonderful when sautéed at ridiculous temperatures in  ghee!

Since I am exhausted from taping the first few segments, all I can share with you now is a picture of the first meal that came together before I collapsed.  Hey, this is real-life, real-food, and really wacky!  I know you are going to get a kick out of it, Gentle Reader.  And Lord willing if you follow maybe half of what is shown, we are all going to get well too (but I make no claims on the turnips part!).

Take care and watch the Hope Beyond FB page for updates (and maybe this blog if I get around to it!).  :JJ

UPDATE:  The first episode is now live on Vimeo!  Let’s make something that resembles lunch!

almond milk, coconut milk, special diet, mold free, gluten free, Candida, sugar free, Lyme, Mold, Mercury, Seizure diet, food as medicine
Sautéed Veggies and Meat, Oven-Roasted Applesauce, and Caila Farms Coconut Almond Milk for Lunch

No Day But Today

A long time ago I made a decision to use the word “love” a little more freely.  That decision came with another which was to not let concerns of what others would think of that get in the way of expressing that love.  For example, if it was a female friend then she would get that the “love” was within the context of loving a fellow believer in Jesus Christ, love like a sister that I never had, and possibly a bond that simply comes with walking through many years of life’s ups and downs together.  The transition would be instant, from “Take Care” at the end of an email to “Love, Julie” if we had just endured a crisis together.  When one heart is hurting, there is no other word that will suffice.  Love covers things well.

Born again believers know the author of love as God himself.  The scriptures instruct us that:

19 We love because he first loved us. 20 Whoever claims to love God yet hates a brother or sister is a liar. For whoever does not love their brother and sister, whom they have seen, cannot love God, whom they have not seen. 21 And he has given us this command: Anyone who loves God must also love their brother and sister.  1 John 4

The Lord is the perfect reflection and expression of what love looks like.  I do believe that those who are not in Christ have a sense of what love is like too.  That is why I feel comfortable including a video in which 1) two women are kissing and 2) there is a man dressed as a woman embracing another man.  If the relationships were real, they must have a sense of connectedness to express their love outwardly.  I am not condoning homosexuality.  I just might understand it a little more since my late Uncle Fred lived and died within the context of “the gay lifestyle.”  I still loved him despite this decision.  Oh how I wish he and others knew the deeper spiritual connectedness that comes in a God-fearing and God-honoring relationship!  The Lord blesses those Who love him first!  (Hebrews 11:5-7)  But that is not my focus here today.

My focus is the importance of expressing love everyday to those you care about.  It’s not weird!  I am reminded of this today in the middle of 8 days in which my husband and I will attend two funerals.  I had only met his Uncle Don one time and was more “acquainted” with Dave than knowing he and his wife Jane more “personally.”  It didn’t and does not matter.  As fellow believers in Christ, their character and lives had impacted my life with that level of connection.  Uncle Don warmly accepted my marriage to Steve that had come at a time when most of Steve’s children still could not.  Since I knew without a doubt that the Lord was blessing our marriage, it was refreshing to feel loved by his family.  I thank the Lord for this.

Also when Steve and I married and started to attend his church home, he pointed out couples with strong marriages that he wanted to model our relationship after.  Dave and Jane was one of them.  They had been married for decades by then yet still had a sense of fun, a spark, and a deep love for one another that was palpable.  They worked separate jobs outside of their home yet were usually together at church and other important events.  Dave served the body of believers, his community, his employer, and his family with equal enthusiasm.  Thank you for pointing out this great example of a Godly man, Steve.  And yes, you are much like him for sure!

Today I am unable to attend Dave’s funeral service due to complications of a serious, ongoing illness.  Last night was particularly wretched.  I had a sense that it would be risky to go to the funeral home and be around so many people and potential exposures that trigger convulsive episodes.  I went anyways. I am also in the middle of re-shuffling my treatment plan and have no idea what made things so much worse.  The only good part about that hellish 2 hours was the toning of my abdominal muscles from flexion posturing, writhing, seizing, moaning, and more.  Oy vey.  In the middle of it I asked for the Lord to remove this hell.  I begged for His mercy.  It must have come since at some point I passed out and woke up about 7 hours later . . .

Today I am beat up from all that has transpired in the past day.  Somehow I am still alive!  Though my heart is heavy with grief on many fronts, I do not regret pouring out the strength that I had to be with friends in their time of need.  I got to be out with my beloved husband and do one of the important things of this life.  Going to the wake reminded me of the truth told a gazillion times before:  there is no day like today.  There is nothing like love between two people, magnified and blessed when they are one in Christ.  And lest it be forgotten or unknown, it is important to express that love out loud and often.  For me this includes the love of my Lord and Savior, Jesus Christ.  For just as it says in the song,

I die without You!

Talk about perfect love! Oh Gentle Reader, won’t you join me in sharing a little love today? 

With love, JJ

Lost in Space

I’ve been up late several nights in a row now, updating my eBook whilst blogging on home safety for my new company:  Two Step Solutions LLC.  While that may appear wildly productive the timing is just too odd for it to actually be that way for me.  I am discovering a few unusual things as I examine this new work, this current blog that you are reading, and the tragedy of illness resistant to treatment.

First, my professional writing lacks clear focus.  I add too many words and the flow is not there.  Oh the subject matter gets covered yet it is not yet up to par.  The short articles I am putting out there are intended to build credibility in my profession and an audience for the time when I want to launch my home safety product.  Perhaps I need a check-n-balance system before publishing each piece?  Yes, something like that.

I am so very dry with ideas to write about that aren’t a re-hash of the saga, the illness.  Sure, I have tried to end each blog with something reflective, insightful, Biblical, creative, humorous or otherwise useful.  It is simply getting harder to do so when the head-banging that accompanies convulsive episodes goes on FOR HOURS EVERY DAY!  You have heard about all of the test results pending.  I continuously try new treatments that make sense to me.  The outcomes continue to be disastrous.  Sure there is hope on the horizon.  But for now it is AWOL!

And if a test showed a particular course of treatment that worked, one could be encouraged as he or she ingested/applied/bathed/drank/swallowed it.  As for me, hundreds of remedies, diets, treatments, scans, procedures, therapies, adjustments later . . . I am discouraged.  Tens of thousands of dollars later . . . I am discouraged.  Moving about while beat up on 3 hours of sleep is virtually impossible yet I was called to do it today anyways.  My will has tanked.  Yes, I am broken and discouraged.

Lost in space.  There is no real sense of time here.  It comes and it goes with little of meaning to measure it by.  The foam in our bed is permanently dented in both places from my dwelling there.  Steve and I pray.  I cry a lot.  I hear that others pray out there somewhere and yet do not contact me anymore.  I am invisible for the most part.  And that’s just how it goes when you have dropped out of life for a few years.  Even blue jeans from Walmart start looking good when I can finally get out of the house on Wednesdays.  Eeeek!  I am an Eddie Bauer gal dontcha know?

I probably should not publish this.  Well stay tuned.  I am bound to bump into some kind of life eventually, eh?  JJ

laxative, medical humor, gallows humor, Lyme disease, chronic lyme, catamenial seizures, non-epileptic seizures, coping with illness, chronic illness Hope Beyone

The moments that matter

child with umbrella, boy, boy in the rain, blog about sorrow, overcoming sorrow, rainy day, hope beyoneWhen things are not right or even worse

We cry out to the air and wonder, “who is there?”

“Can anyone hear me on my bed of sorrow?”

“How long will this go on, how long?”

Oh the angst for enduring what simply should not be . . .

I could bemoan much pain in my heart this day:

From my spirit through my tender frame.

But why?  What will I gain by wallowing here?

As I listen to a friend who sounds like me over the waves,

I hear wisdom that comes with her years.

She doth declare that in her own time of prayer

The Lord spoke to her so gently.

In all of those times of suffering,

When surely no one cared He said,

“I was there with you.”

And her heart was full, no place untouched.

So today let’s heed this wisdom

Should we, too seek and hear His voice.

Don’t just want for the pain to end.

Reach into the moment to His love so grand.

Find people with mercy for the darkness of our lives

For we all have a burden to carry, each one.

And let us come together in prayer, in fellowship, in praise.

But most importantly

Kneel at the throne of grace often

In adoration of the Person who sees you always.

For Jesus loves you always.

And turn these into moments that matter for all time.

They will be sweet, and soften the burdens we will endure.

We can go on when held by His hand.

Yes, we can indeed.

JJ

Missing you terribly

There’s a Barbara Streisand song with lyrics that go something like this:

If we had the chance to do it all over again, tell me would we . . .

Could we . . .

The way we were.

It’s not that I would like to go back to my former self or anything like that.  I have had chronic pain for most of my life and lived with pain inside my heart for longer than that.  Many of my own mistakes were downright damaging.  Still other experiences damaged me and it would take until very recently to be free of their dark spiritual underpinnings.  The freedom I experience in today from the drama of yesterday’s trauma was worth the good and bad spent getting here.  But there is one part I am not sure what to do with . . .

I was never really physically fit and virtually always held a critical eye toward my physique even when at my ideal body weight.  All that did not seem to matter to the stream of the male persuasion that came my way, ever since I was twenty years old.  (Not sure what they were waiting for before that!)  I always rode my bike as a kid EVERYWHERE.  I did not think of it as exercise at the time, just a means to get me to the home of a friend.  Several times in college I tried running around the sidewalks of the sprawling campus.  “Library Hill” was a killer!  Maybe I should say that I ran on most paths except the 27 or so degree incline of Library Hill!  Carrying a full load of books up and downhill to class or to study late into the evening at the library should have earned me an extra degree in something or another!

What I miss most is the innocence of moving without thinking about it.  Every day lately brings stark reminders of the convulsions that have returned.  Every day brings a new version of shaking that hurts my neck the most and leaves some version of a headache behind.  Every day the hope of exercising for the enjoyment of it alludes me only because I cannot; I actually had grown to like high intensity workouts before I got sick 3 1/2 years ago.  Even with chronic pain I worked out with weights, unloaded my truck bed filled with sod/dirt/mulch, and kayaked for a couple of hours each week.  I loved being strong.

Today I miss being strong.  The trauma of seizures and convulsions have taken their toll.  The sickness after an episode usually lingers for hours, days.  I never really know for sure when the next episode is coming although the bedtime and waking-up patterns have been fairly consistent throughout this ordeal.  Somehow despite my weakness, I HAVE NOT GIVEN UP for more than a day.  Yesterday Steve and I went for a walk with our pup, Elle though most of the time the walking is through the halls of our home or a medical facility . . . or this past Saturday’s date night to the grocery store.  It’s something, eh?

O.K. so I am bummed out.  I have missed writing and did not blog so as not to bum you out, Gentle Reader, in reporting that the surgery did not stop the episodes as I had hoped.  There are tiny improvements and for these I am grateful.  I think I’ll need a little longer to recover and clear the anesthesia completely out of my system.  In desperation I went on a water fast for 24-hours last week.  It was awful!  Amazingly I did not have seizures until the 24th hour!  I believe the Lord gave me the wisdom through it all to start a ketogenic diet so new research and a new direction began the next day.

A ketogenic diet is a high fat diet where the fat becomes fuel for the body instead of carbohydrates.  The version for seizure control (generally used for children) is unlike the keto diet for weight loss in that fats are consumed more than protein “macros.”  Grams of carbs are the tiniest portion of the three. The increase in ketones are measured in either the urine or blood and thought to be the mechanism that brings some level of seizure control in 25-50 percent of children.  In children the diet begins after a 24-48 hour fast in a hospital.  Hmmm.  My great Physician led me here after my own fasting experience too.  So with the MyFitnessPal nutrition app in-hand, I am moving towards the ideal ratios of fats, proteins, and carbohydrates.  Good news:  that means lots of bacon!  And at least I am off the pureed diet now!

The way we were.  Can it be that it was all so simple then?  Or has time re-written every line?  If we had the chance to do it all over again, tell me, would we?  Could we?

Perhaps the real longing requires me to not look back at all.  Then what is it Lord?  Fill this emptiness, please.  Ease this hurting.  Thank you for new tracks to run on, so to speak.  I still need you desperately to guide me.  I realize that I may not be alone in this desire you know.  Please comfort the Gentle Readers out there who need you too.  JJ

EMU Halle Library with another runner testing his strength!
EMU Halle Library with another runner testing his strength!