And then it gets real . . .

It is now 6:39 p.m. on a beautiful Saturday and I am grateful to be able to function at a low level once again.  Sometimes your own posts become your best medicine!  I am so glad that I had the opportunity to explore the topic of suffering before two hellish nights.  Sigh.  Perhaps this suffering shall pass in time . . .

Low Dose Naltrexone, a compounded medication used off-label to raise a person’s pain threshold and boost the immune system of someone with an autoimmune disease, is now ruled out for me.  Just 1.75 mg taken at bedtime the past 2 nights was enough to set off violent seizure attacks!  Oh yeah, I’ve had some of these attacks more often lately, but not for 1 1/2 hours in a row with hardly a break to breathe!   The duration was much longer this morning with longer breaks in between additional episodes.  After 2 hours then 3 hours then 4 hours of sleep, “I am able to function at a low level once again.”  This saga is a bite in the shorts for sure.  I AM FRIED.

So what did I learn here?

First, it’s time for more than one-half of a day break after completing one treatment regime before beginning the next one!  Healing from a chronic illness is a process, not a race.

Second, it’s time to simplify my daily routine even more.  Cleaning the entire house every week is just not going to happen for awhile.  This is a bummer since I am paranoid about dust accumulating, since we completed the mold remediation of our home.  Maybe the dust is cleaner now?

Third, it’s time to ask for help when I need it and not just from my husband.  A few ladies have offered assistance over these past 2 years of illness and I have rarely accepted it.  Maybe I could use help with a few things during this particular time.

Fourth, I must continue keeping my mind filled with scripture, Christian music, Christian messages and uplifting images to ward off the temptations and lies of the Evil One.  I must not fall into despair.  I must not keep apologizing for the effects of an illness that are clearly out of my control.  I must live as though the Lord is creating a masterpiece from the fragments of my shattered life, picking up each piece as if it were a treasure and not another burden.  God will use this for His glory and my good.  I must hang in there for the finished work.

Fifth, I must keep writing, including the good, the bad, and the ugly.  And when I do, I will continue to leave my gentle readers with hope by the time I reach the last period.  To write has been an incredible salve for my wearied frame, my wearied mind.  My soul, well that’s already in the hands of my Savior.

I am hungry again!  But it’s more-than-time for an Epsom salt-and-baking-soda bath and a shower!  Perhaps the Beanitos chips and unsalted dry roasted whole cashews I just ate for dinner while writing this will tide me over just a little longer?  Hope so.

Seeya next time, perhaps with better news.  :J

Elle gets a real job
Elle gets a real job

Counting on Muscle Memory!

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Completing 30 minutes of the Metabolic Effects hybrid workout DVD with repetitively lifting 5 pound weights, reflected the highest level of fitness I had achieved in my life.  The increased upper body strength provided a great foundation for hitting the kayaking season with my River Bear husband just 2 months later.  We would go out with the local, recreational kayaking group virtually every Tuesday night from summer through the Fall.  I even sampled one member’s cookies after a night of paddling:  a sweet treat, in a peanut butter version for health reasons of course!

While everything was not perfect at that time, I mean I still had chronic pain and needed a couple of days to recover afterwards, life was as good as it had gotten.  I was working part time, enjoying gardening in a real home (not a condo or townhouse), and blessed beyond measure with a loving husband and church family.  My father had died earlier in 2011; that was bittersweet.  My dad died  2 months after I got to see him in person for the first time in 30 years!  So while  I was grateful for the reunion, the healing, and the new relationship with him, I was also very grieved for his passing.  And near the end of that year I had begun the Master Gardener classes at our local County Extension Office.   To become a Master Gardener was a new goal borne out of my mother’s love for gardening passed onto me.  All in all, it was a good and important year in my life.

What I did not count on was contracting viral hepatitis after kayaking in a local reservoir October 11, 2011.  I was deathly sick.  I never fully recovered.  After the holidays, my doctor when looking for other reasons for my illness and backed into a clinical diagnosis of Lyme Disease.  Within a year mold illness would also be discovered and a need to completely remediate our home.  The year and one-half of stress, illness, extraordinary expense, inability to work, and social isolation would take their toll.  My body became severely deconditioned as physical activity generally exacerbated most noxious symptoms.  To complete my basic self care, prepare my special diet, and to keep the house clean became my focus in addition to all of the activities related to managing my healthcare:  16 to 18 hours per day!  The remaining hours were crochity at best.  Dialing a phone and pressing 18,000 times the “1” key is not too far from the truth when you have to call so many health care providers, insurance companies and so on!

Today I am counting on muscle memory.  You’ve heard of that before, right?  Wikipedia defines it as follows:

Muscle memory has been used synonymously with motor learning, which is a form of procedural memory that involves consolidating a specific motor task into memory through repetition. When a movement is repeated over time, a long-term muscle memory is created for that task, eventually allowing it to be performed without conscious effort. This process decreases the need for attention and creates maximum efficiency within the motor and memory systems.

I am hoping that when I am able to work out consistently, the memory pathways will still be there to get me stronger a little more quickly than if I was starting from scratch.  Certainly I have experienced this, for example, when getting back into my kayak 2 weeks ago, for the first time in a year.  I do remember how to hold the carbon fiber winged racing paddle after all!  And I didn’t fall out of my 19 foot Kevlar Stellar SR surf ski.  Wow.  There sure are sweet benefits to being married to a kayak racer, by the way!  My equipment is very cool and exceeds my abilities for sure.  (With the chronic pain, the lighter, more efficient equipment helped me to participate in a demanding sport.)  Thank you Lord for this cool history and the hope I have in You.  It’s all good.  🙂

One week before this journey began

Hanging in There!

efu-hanging cat with dogOne more day and I will be free of this 29-day round of antibiotics.  A short course of candida treatment (6 days) begins after that and I’ll see what’s left of me when I’m done!  On this day, I am grateful for:

  • My beloved Steve whose faith in the Lord and faith in me never falters.  He is a precious gift in my life.
  • Precious friends within the Lyme community who “get it” as we walk through this journey together.
  • Our loyal Elle whose brown puppy dog eyes have met mine, melted me, and comforted me in the wee hours of many late nights.
  • A brilliant Lyme and Mold-Literate Doctor.
  • A lovely home with the time and space I need to recover.
  • And deepest of all is the indwelling presence of God through His Holy Spirit Who speaks truth into my life, covering the lies and fears.  Thank you Jesus!

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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In the present moment

A little something from Jesus Calling by Sarah Young (2004)

Rest with me a while.  You have journeyed up a steep, rugged path in recent days.  The way ahead is shrouded in uncertainty.  Look neither behind you nor before you.  Instead, focus your attention on Me, your constant Companion.  Trust that I will equip you fully for whatever awaits you on your journey.

I designed time to be a protection for you.  You couldn’t bear to see all your life at once.  Though I am unlimited by time, it is in the present moment that I meet you.  Refresh yourself in My company, breathing deep draughts of My Presence.  The highest level of trust is to enjoy Me moment by moment.  I am with you, watching over you wherever you go.  (Page 186)

Psalm 143:8

New International Version (NIV)

Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I entrust my life.

Genesis 28:15

New International Version (NIV)

15 I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you.”