It’s more than a delicate balance

As anyone who likes to (or needs to) cook knows, it can be a tough balance to make a recipe taste just right.  The host of your fav cable cooking show says to add a pinch of salt and pepper as you watch her grab easily a fistful of seasonings.  Ah ha!  So that is why version mine comes out differently than yours!  Just ditch the online recipe on her website and fly by the seat of your pants!  Taste, taste, taste and make the dish all your own, eh?

I don’t tend to make meals using recipes anyways.  With a limited diet and having to make a wacky version for me and a “normal” one for my beloved, I would become too frustrated trying to follow the masterpiece designed by someone else’s reality!  I just start with what I CAN eat, add more salt with my eyes closed then put one of my go-to seasoning mixes on Steve’s version.  It works for us.  Well most of the time, that is!  And when it doesn’t, that is what salsa is for right?  (O.k.  I know I have offended someone out there now!)

My health situation of late is kinda like the same delicate balance.  Add too much zinc for too many days in a row or take a new supplement or med for more than 3 doses and whammo (!) I get burned at the “steak.”  There’s little more than dog food left of me afterwards.  Gratefully my Doc does exhaustive lab testing to try to coach me in the right direction.  But now even labs cannot predict the outcome anymore.  I seem to react to everything.  It’s worse when the pharmacist of an independent lab starts making suggestions too.  So I try this and that.  Oh how I want things to work out well!  So far, it has not.

I am my own worst enemy in these scenarios.  The results aren’t even back yet for the female hormones that are at a mystery level since going through menopause.  I went through menopause during the almost 4 years of this illness and these tests for me are way out of date.  The significance of the hormones is that a goodly number of women (who have true epilepsy) have worsened seizures during menopause and others have reported a new onset of what is called “catamenial epilepsy.”  While I do not think that I have epilepsy per se and all the fancy labs have supported this, I do find this course of study intriguing.  I joined a couple of Facebook groups on the subject and have hunkered down into some new online research.  Then of course I re-started a tiny bit of progesterone on my own to see what would happen.  Yeah, I know that I should wait until the lab results are back in a total of 6 weeks.  But heck, at the rate I have been going, 6 weeks means up to 210 more hours of convulsive episodes!  Why wait?  I am going to go through hell anyways . . . .

Dr. Erwin Leutzer of Moody Bible Institute teaches that, “when you are going through hell . . . DON’T STOP!!!”  Oh yeah.  That fits for me.  Not sure what to do with some of the symptoms that are emerging though.  Clearly this will need professional tweaking at some point!  Do ya blame me for trying?  What if I finally stumble upon the resolution to this nightmare?  There are so many labs that are off now and the convulsive episodes have escalated to 4 hours or more most days, I just figured that it’s worth a shot . . . worth disrupting the status quo.

The decisions of life can be a delicate balance over here sometimes.  Do we continue with travel plans when I am in the throes of chronic illness?  For us, the answer is yes.  We just adapt things a bit and get on down the road.  Life goes on.  In due time, if it is the Lord’s will, I am going to be well.  In the meantime we will use the portable heater in the Tin Can Ranch (aka travel trailer) instead of the noxious propane mini-furnace so I can be with my beloved overnight at his kayaking competitions out of town.  In the meantime I’ll freeze portions of meals to ease food prep when Steve needs to pitch in for me.  In the meantime I will fold laundry when my brain stabilizes in the wee hours of the morning and scratch the ears of our pup who gets more fractionated sleep than I do.  In the meantime Steve will head into work later to make up lost time and we will be grateful for his flexible employment.  And so it goes, a balancing act on steroids that we have come to master, one ingredient at a time!

Gentle Reader, I’ll bet you understand the need for balance with the stuff of life. Let’s look together with gratitude that we do have some choices even in the worst of situations.  For those who believe in the Lord, Jesus Christ, we know that all things, delicate and less so, will work together for those who love the Lord and are called according to His purpose.  It’s His promise from His word in Romans 8:28.  That is because He knows us and loved us before we were even born.  He knows and cares for all of the details of our lives!  (Psalm 139)  And He knows what choices we will make.  As for me, I will aim to make choices that keep me moving forward, aiming to win.  Sometimes things will be out of balance for a time.  Yet with my eyes fixed on Christ, leaning on His Word and the leading of the Holy Spirit I will run my race of life with endurance:  endurance the produces hope (Romans 5:4) and endurance to finish well too!  (Hebrews 12:1)

surf ski, surf ski racing, river racing, USCA, kayak racing, unlimited class, competition, drafting, Epic kayaks
My River Bear leading in a United States Canoe Association event last year. Gooooo Steeeeve!

Never sacrifice sweet victory for a need to stay comfortably in balance though.  Attend to the tasks at hand with wisdom then get out there and LIVE!  Do not stop!  May we both finish well my fellow sojourner.  The crown of glory awaits!

That is all.  JJ

To Hell and Back: Part 2

Continued from To Hell and Back:  Part 1
Back by Grace
I had caught a glimpse of hell on earth with the most violent seizure attacks that I had ever experienced in my life in the wee wee hours of the morning on July 5, 2013.  Our mini family reunion and gathering for a memorial service was shaping up to be a living nightmare with no end in sight; something like, “weeping, gnashing of teeth” were now my living hell as the Bible describes hell for those eternally separated from God.  But I have Jesus in my heart!  Nothing made sense.  Surely I felt as though I was dying.  I found myself asking:  where is God now?
The story continues.
It was inching closer to 6:00 a.m. EST on Friday, July 5th.  Since we were now in the CST zone, my husband, Steve, and I figured out between the ongoing attacks that we might be able to get a little sleep before the sun came up if these episodes would somehow stop.  But how?
The inner voice I have come to know as the Holy Spirit in times such as these suggested that I ask Steve get my industrial gas mask out of my suitcase.  He did, I strapped that baby on, and within 5 minutes the episodes had diminished in frequency, intensity and duration.  Just a low grade intermittent series of tic attacks remained and I started to be able to speak without eliciting further attacks.  Steve was already talking about packing up and going to a hotel immediately or even driving home tomorrow!  We doubted how we could possibly find the strength to do either option at this hour and what if I reacted to the hotel room?  Then what would I do?  Sleep in the car?  I wasn’t even sure it would be good for me to go to the car for awhile parked in front of my in-law’s because of the hot and humid weather of Arkansas:  perhaps I would suffocate in my sleep!
Then my waking prayer led me to suggest to Steve that he try to get some sleep and I would just lie there in bed for awhile until he was more rested.  I needed to trust that after some sleep Steve could lead us in what to do next and in the meantime the Lord would somehow sustain me.  I was a mess anyways so I should not be trusted to make any big decisions!  It was becoming difficult to breathe through the large respirator mask with my sore, constricted chest.  I was also getting very warm further aggravating all of the flared up noxious symptoms like the massive neck headache.  But I must wait anyways.  Neither one of us in no position to make a rational decision at this time.
Turns out that I was able to sleep about 2 hours.  I woke up feeling like my head was in a vice!  My chest tightness was actually reduced however, perhaps by breathing against the resistance of the respirator mask fitted to my face.  Wow, just like loosening a tight muscle through deep pressure, the intercostal muscles of my rib cage had relaxed enough to allow both breathing and sleep!  And somehow I was now fully awake.  I felt terrible but awake.  Then the next steps came to mind.
I gathered my purse, got dressed in my clothes from yesterday, grabbed some food and water from the kitchen and headed out to our car.  There was no time to worry about clean underwear and the latent UTI I was still battling.  Surely I would feel better after some nourishment as it usually had helped after past seizure attacks, so these would be my next steps.
The fresh air outside felt good.  It was considerably cooler and less humid than when we had arrived.  But geez (!) did it feel weird to be sitting in the passenger seat of a Dodge Magnum at daybreak, loaded with 21-foot and 19-foot surf skis on the roof!  How the heck could I remain inconspicuous in a fighter jet set up like that?  I saw the elderly neighbor next door walk outside to get his morning newspaper.  I’d been sitting there awhile, his house was for sale, and I was insanely curious about the listing information in the box in front of his house.  My how the delirious mind wanders!  But at that moment I just wanted to sink below the window line of the car door, if you know what I mean!
I must mention here that my husband’s family knows the story all too well of a really really close female family member suddenly leaving a family reunion with the family car sans family!  The father and his children were stranded several States away from home without transportation or monies to get home any other way.  Turns out that a couple family members helped them out and the dad rented a car for part of the trip.  Now here I am, relatively new to this family, suddenly disappearing from the bedroom, sitting in the “family car” with my set of car keys, and no one knows what is going to happen next!  I knew that I was not going to leave to go anywhere until someone in the household woke up, even if I knew that practically speaking, I could take time to find a hotel while everyone was sleeping.  But leaving a “ransom note” simply would not be enough to remove the reminder of the old wound.  Leaving would just hit “too close to home” if you know what I mean!  I had to stay put.
Then I noticed that the neighbor next store had come outside again, this time to take an early morning walk.  He was now talking to another neighbor just up the hilly, winding street.  Taking a walk was one option I had considered to kill time so I got out of the car.  The H.S. was working again and the idea came to ask the gentlemen about other hotels or rental properties within the community.  I knew that my mother-in-law’s house had been rented in the past.  Perhaps there are other homes like hers, maybe one with hardwood floors?
Turns out that the men were very friendly and helpful.  The retired Baptist preacher told me that a house across the street was was a rental and there was a sign with a phone number posted over the carport.  We walked over to the house and I copied down the phone number.  I thanked him as we finished chatting and returned to my fighter-jet home base to start making phone calls.
My dearest Steve walked up to the car about then to check on me.  I updated him on the information that I had just learned and said that I felt awake enough to start making phone calls.  He was still so exhausted that he needed to return to bed.  I didn’t see a problem with that and kissed him goodnight once again.  Before long my in-laws, my “other mom” and “other dad” as I call them, were up and checking on me as well.  With tears I shared what had happened (and would learn much later that night that they had heard me crying earlier and knew something was wrong).  I did not want them to feel bad as they had graciously opened their home to us to stay with them for the weekend.  Later I found out that they never got the Facebook message about my sensitivities!  Sigh.
Within a few minutes, my “other dad” and I were checking out the housing options that sounded suitable for me.  Over the next several hours I had done a sniff test at the local hotel, had another seizure attack and mostly recovered, toured one of three rental houses, rented one, stopped at the library, and returned back to their house to pack up the car.  By this time my Divinely-sustained energy on two hours of sleep was waning.  Like a damaged war plane on auto pilot, I eventually got to bed after some food, supplements, spit bath, etc. around 3 in the afternoon.
The townhouse rental worked out reasonably well as alternative housing.  I could prepare all of my special dietary foods without inconveniencing or even offending my “other mom.”  My in-laws’ provision of a place within the gated community of Hot Springs Village even gave my husband’s sister and husband a place to crash closer to family for two nights with us in their own suite.  Staying with us saved them hours of driving and increased our time to visit with them.  Sweet.  Unfortunately my time was cut short some by some more attacks (cause I’m still on Lyme antibiotics that flares up the attacks too) but it was still more time overall than we would have had if they were staying an hour away where their vacation had started.
Steve and I had some very sweet respite in that townhouse in Hot Springs Village.  We got to share our surf skiis with our family at one of the beautiful lakes nearby too.  If you read between the lines, this means that I got back in my surf ski kayak for the first time in a year!  For that, I am also grateful.  It felt great!
“To hell and back” is my sentiment for this past long weekend.  Going forward, my antibiotic regime is about to change to better address the UTI.  Perhaps I will tolerate the Levaquin better this time than in the past, for having endured the wretched side effects of the Doxycyline I’ve been on the past 2 weeks.  As the long weekend continued, I ended up reacting to environmental toxins in more places than my in-laws’ home and generally recovered o.k. after each. Gratefully, the reactions were in private, my preference.
So the Lyme and the Chronic Inflammatory Response Syndrome certainly did not take a vacation this Fourth of July holiday!  And yet I can’t help but see that having the attack and spending time with my “other dad” brought us closer together in a way that probably would not have happened if everything had gone  smoothly.  I saw a tenderness in him on Friday that I will cherish.   Steve and I have only been married five years.  Sometimes it takes a lifetime to have a connection like that with your “other dad” . . .
There’s a saying that I’ve quoted in this blog before that bears repeating here:  When going through hell, don’t stop!  Yup, that’s a funny one!  The take home message is this:  if you but do as scripture leads, with the guidance of the Holy Spirit in the name of Jesus Christ, our suffering (seizure attacks) will produce endurance (on 2 hours of sleep), our endurance will build character (to enjoy time with my father-in-law), and our character will produce hope (that our suffering will not be wasted).  I encourage you to mediate on Romans 5:4, where these themes are found in God’s Word.
When going through hell on earth do not stop.  The Lord is working and it will be for our own good and joy.  He promised for those who believe in Him (1 Peter 1:6-9) and in the end there can be great joy!
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