Jesus is for the Wounded

Treatment Update

Published on November 23, 2015November 24, 2015 by Jesus is for the WoundedLeave a comment

outnumbered

The concept of negative numbers to me is as mind-boggling as that of anti-matter. If something can be measured on an integer scale then I suppose the values could go up just as easily as they could go down. But when they go below zero, which is nothing, how can anything be less than nothing?

Perhaps the answer depends upon to what subject the scale is being applied. Ha! I would love for my personal scale of symptoms to be at zero. I would love for the intangibles wreaking havoc in my life to be less than nothing as well. But that is just not how it is. This past Fall was very bad, indeed.

More days this past Fall than any other time since I got sick over 4 years ago, did I write “Sick Day” on my calendar as the activity that characterized the entire day. That means that over 8 daytime hours were spent in bed due to an inability to perform any goal-directed activity: about 3 days each week. That stinks. I had three trips to the emergency room when exasperated with noxious symptoms, more variety in the traumatic nature of seizure attack episodes, an increase in triggers of episodes (which were unclear more of the time), and less ability to perform my activities of daily living. Steve had to physically care for me (from toileting to feeding) about four times each week. This year was the first time that I was unable to complete both my Spring and Fall clean-up chores for our gardens. An occasional meal out with Steve has ceased. There even was a blow-up with my Doc in which he suggested I might work with someone else. He admitted that he doesn’t know what to do. Fine. But who else would that be?

So here is my status:

Results of blood tests and stool tests are now pending to identify microbes that may be keeping me from getting well. Flare of systemic Candida is one possibility.
Chronic Lyme disease is back on my radar as a possibility so for these first two items I have started to take an anti-microbial supplement every day.
Mercury burden is significantly reduced yet its role in ongoing illness is still unclear.
Dehydration is a daily battle regardless of how many fluids I ingest or receive via IV.
Continuous daily seizure attacks total 2 to 5 hours every weekday and often increase to 8 hours at least one day per week.
Social isolation continues to be a problem. I am grateful for a weekly Skype Bible/prayer time with fellow bloggers and may add a telephone support group soon.
An extremely restricted diet (sugar/sweetener-free, dairy/mold/gluten-free, low oxalate/copper/meat) only becomes more restrictive as time goes on than more permissive. There are often episodes after eating and I do not know why.
Physical therapy has generally helped to reduce neck and other pain yet the 30-minute convulsive episode at the end of nearly every visit is burdensome. I bring my own sheets and graciously they avoid fragrances around me. They are saints!
Generally I am only able to leave the house for medical appointments, grocery shopping, etc. twice per week, remaining homebound the other days. Recent exceptions: two wakes!
Physical exercises and activities, including my P.T. home exercise program, are rare due the likelihood of triggering episodes.
Travelling, even with our super clean travel trailer, increases sickness too much to bother for awhile. Setting it up takes me 3 weeks and cleaning it afterwards takes 3 weeks as well! Oy vey.

So now my pity party is over and I have nothing left to say. I am praying constantly for the Lord to keep my heart from bitterness yet I fear that I am losing the battle. Crying comes forcefully during the setbacks and I am concerned that it is more a manifestation of illness progressed to my brain than true grief. My husband Steve carries the burden of all of this in his own way. He is a saint and my hero. Thankfully he has a great support network at church and work, his athletic activities, and lots of social outlets to keep him going. Steve is an amazing man surely one after the Lord’s own heart.

I am hopeful that the anti-microbial treatment will help me; sometimes it even stops the episodes. Yeah God. However I am very stressed about the upcoming holidays. Maybe there will be a “Christmas miracle” at our house too? Lord willing, the numbers in my life will improve in a positive direction. In the meantime I will be hanging tough. It’s the best I can do. JJ

senior numbers

When there are no words

Published on November 19, 2015November 19, 2015 by Jesus is for the WoundedLeave a comment

“Look up. Look waaaaaay up,” were the words of The Friendly Giant in 1986. This American children’s television host invited the viewer into his miniature living room where he pulled out a chair just for you by the fireplace. Then an image of his fake leather boots appeared 10x the scale of the scene on the television as he invited little Sissy or young Bobby to follow the camera up to the smiling eyes waiting to tell a story, waiting to introduce you to a host of characters. Rusty the Rooster was a silly-looking puppet yet their banter held my attention all the same. Even though by 1986 I was not a kiddo anymore!

We often look up to see the wonder beyond us: gazing at the twinkling stars so visible in the crisp Fall air or maybe oooing and ahhhing at the bright ornaments adorning the department store Christmas trees already on display before Thanksgiving. There is something magical about a beautiful sight just beyond our gaze, just above our smaller human frame. When that object is but ordinary the wonder may be less yet the opportunity to reflect may be just as profound too.

The ceiling above my bed of sickness holds much thought these days. On a Monday I might see a simple popcorn ceiling in the same building contractor’s white paint of every home built that very year. A few days later it may be the seam tape of the electrical lines painted to match the composite panel lining the roof of an aluminum travel trailer. Two months ago it was a bright blue shade sail floating softly up, gently down above my patio chair when the weather was still sunny and warm. Such simple forms that served to give me pause from the mayhem of the hours that dragged on before . . .

shade sail patio summer 2015

Times like these are best spent dwelling in the presence of the Lord. No words fill my mind in those kind of moments. The tears are already spent; the energy almost completely drained away. Such is the aftermath of uncontrollable seizure attacks that plague my weakened frame day after night after day for hours without end. The pattern continues despite new anti-microbial treatments, tests, consultations, prayer, tears, strategies new and old. New pains come and find a way to stay. There is nothing left to say. There is nothing left to do but to dwell, I guess.

Even love can be like this I suppose when it hurts so bad and you still can’t seem to shake the pain away. All you do is focus on the form that you knew or still know that stands in front of you when only a blank slate emptied of your future together remains. Turn to the left, turn to the right, stand up, sit down, and unlike the cheer song at the football games in 1986, there is no fight! Fight! FIGHT! when love goes away for good. Oh how I long for the familiarity of the pains I had known long ago. It would be so much easier to handle than the emptiness of my heart this night. Yup. The joy is gone! Gone! GONE!

So what’s a middle-aged gal to do in the middle of the night and there is nothing to look up to anymore? When I have written more words from every angle that my heart can imagine and no new inspiration comes to fill the page, gosh, what will I do? Not much, really. Just wait I guess. Tomorrow is a new day and it will be here before you know it. Maybe something good will happen, eh?

In the meantime, won’t you hang in there with me? Here, I have pulled up a chair for you too Gentle Reader. The Friendly Giant is now known as Immanuel and has a special story to help us end this little time together. It’s a great read for a bedtime story at any time of the day, I promise.

I do hope you enjoy it. JJ

Psalm 121

Let the numbers tell this story

Published on November 16, 2015November 17, 2015 by Jesus is for the WoundedLeave a comment

While the numbers in my college statistics courses were fascinating and I applied them well in my Master’s thesis, I must admit that math was never really my forte. I’ll blame it on Mr. Courtright! Our Algebra II/Trigonometry course in high school was a constant source of frustration! John and a couple of the other male students would pour over the text book with him at the front of the room trying to understand the lessons he was supposed to be teaching that day. Yeah, you got that right: high school seniors trying to figure out advanced mathematics on the fly! I am so very glad that I never again had to sit through a traditional math class after that one!

Statistics are a different genre though. Statistics often tell a story that we can use to make sense out of the stuff of life. For example, landing one standard deviation from the mean (the average) in a bell-shaped curve can help us feel like things are going to be o.k. most of the time, in the right scenario of course! Enter here special numerals applied to my recent trip with Steve to Georgia and South Carolina that will tell this story better than I can even without a calculator! Oh how I wish some of these were more comforting than the majority of them though . . .

Over 7 days of camping in 2 locations, I was unable to leave the travel trailer 3 of the days due to illness.

My beloved Steve attended 2 of the 3 family wedding-related activities in Georgia and I attended zero.

We travelled over 2,000 miles in my truck with our 67-pound German shepherd, Elle, settled sweetly behind the jump seat of the King Cab. Such a great traveler she has become!

I prepared about 96% of all of my own meals making this trip more of a “business as usual” affair than vacation in the realm of food.

One hour of the five that I spent in our friends’ home on Monday was spent in continuous convulsive episodes on their couch. Thankfully the two young children had already gone off to bed when I crashed; graciously the three adults prayed over me for the Lord’s tender care as we all go forward from the significant stressors in our lives.

The kids and I planted 32 daffodil bulbs the morning we left South Carolina, overplanted with dozens of anise hyssop seeds. Hooray! By Springtime the view from the kitchen window of their log cabin will be alive with flowers interspersed amongst the numerous towering pines.

daffodils, mini daffodils, buttercup flowers, Spring flowers

A threatening wind storm with gusts up to 40 MPH forced us to leave a day early for safety towing our Camplite on the highways to get back home. Just a few minutes after we arrived home at 4:00 a.m., the winds increased again closer to the estimate of 50 MPH by morning. We had blown in just in time, praise the Lord!

Nearly 4 days have passed since we got home and I have yet to clear out, clean out the rest of the trailer as needed after a week of travel. Steve completed the first 5 loads of laundry and about 3 more are left to go. I have been sick in bed for most of the past 3 days, sleeping in late to recover from the nasties which characterize this wretched illness.

Over a dozen doses of a new anti-microbial treatment (Biocidin LSF) have brought both relief and a flare up of symptoms at times: begun when travelling and continued back home when seeking a new direction, new relief, new hope for a future without illness. Two violent convulsive episodes followed on Friday after an appointment with a new specialist and a new lab test, respectively. Many more filled the 2 days that followed. Perhaps this week (and 2 weeks shy of the 4-year anniversary of the first waking seizure attack) there will be an answer to end this suffering? The odds are wearing thin lately for sure.

Yet through it all, I am reminded of the 3 days that my Lord and Savior, Jesus Christ died and paid the price for all the negative numbers, the heartaches from what is not right in our world. He knows the mathematics of it all greater than I can ever imagine and holds it all tenderly in the palms of His hands, ready to redeem it for good when He comes again in glory. I choose to believe the promise that His precious thoughts towards me and you too, Gentle Reader, outnumber the grains of sand on the earth (Psalm139), giving us hope for a better tomorrow. For as He thinks fondly of the ones He loves, He also promises to wipe away our every tear someday (Rev 21:4) when the time is right: when time is no longer numbered in eternity with our Heavenly Father, God.

And that my friend is a story worth writing about. A world without limits. A love beyond measure. I just hope that when all is said and done, when it is time for rejoicing in the heavenly realms, that you will be there with me there too? Let not these numbers be wasted! Won’t you accept the love of Christ into your heart this day, this night too? Oh how I hope so dear one.

With love, JJ

Four-Wheeling in a Travel Trailer

Published on November 16, 2015November 18, 2015 by Jesus is for the WoundedLeave a comment

getting lost, moon at night, moon, camping, campground, campsite, Georgia, November sky, October sky The River Falls at the Gorge Campground promised to be a lovely place to be along the Tallulah River this past week. Our reservations and multiple modes of directions were in tow with the GPS programmed to get us there, MapQuest directions handy between the seats, US Atlas turned to the State of Georgia, verbal directions written on our reservation confirmation sheet, and a back-up of directions from a Google search if needed. But it was the map linked to the website of the campground that eventually got us there around 6:00 in the morning. Yes, the River would be beautiful at sunrise . . .

But it didn’t go the way we had it planned! Of course we knew that it would be a 12+ hour drive from Indiana but not over 15! Well that sum includes completing the hook-ups once we arrived of water, electric and sewer. O.K. so it’s kind of a modern way of “camping” yet still more rustic than the Bed-and-Breakfast accommodations to which I had become accustomed many years ago! This is my version of “roughing it!” There still is a lot more interaction with the elements than you might expect, (more on the mud another time!) especially trying to find a place in the dead of night on a long and twisty dirt road somewhere in northeastern Georgia.

“Something just isn’t right,” confessed my beloved Steve when the horse paths we were travelling on for almost 30 minutes ended in in 3 driveways, 2 of which were blocked by metal gates. All of them had signs posted next to them from respective security companies. Oh dear. That would not be typical for a campground for sure! It had been raining for hours and the dirt road was largely ungraded for heavy traffic, especially for a wide range of local to out-of-State travel trailers and motor homes. How in the heck would a bus-sized RV ever make it up the road we had just traversed? Yes indeed something was very wrong!

We decided to take some time to assess our situation. We had already turned around twice on the main road, trying to find the campground which was supposed to be “one mile past the State park and off Highway 441.” Well that just wasn’t our reality. I reprogrammed the GPS and the scavenger hunt in backwoods was our third attempt to find our river-front paradise. We had no other ideas at that time: about 5:30 a.m. We got out our umbrellas, Sure Fire flashlights, and hiked around. Probably no one would mind at that hour that we were blocking everything with the 40-foot total length of my mid-size pick up truck and our 16-foot Camplite! Steve walked closer to one of the open gates as I exclaimed, “don’t go in there! There’s probably a laser light across the road that we might activate if we cross a line hidden by the trees!” (I had seen this before in the homes of my home health care patients who lived in more remote areas.) We backed away and looked up the rutted road that had led us astray. We would need to re-trace our course.

Steve decided to pull out the manual for the brake controller and make some adjustments right there in the wilderness. The timing was as crazy as it was brilliant. An adjustment was sorely needed to manage the hills and valleys of our obstacle course back to the highway. We were also concerned about the softening of the terrain as it continued to rain; four-wheel drive was already engaged. And what if we were not alone out there? I thought for a moment what I might do if a bear or wild hog might greet us before we had made our decision to get the heck out of there. I was packing a pistol in my pocket but the caliber wouldn’t do much for a beast taller than my knees. Oh yeah, I could flap the umbrella around and make a lot of noise. Sure, that’s it! Gratefully, we were alone out there having another Steve-and-Julie bonding experience and never encountered another soul.

Back down the road we went. Steve made an incredible 5-point turn with the trailer in-tow with me scouting out the lay of the land outside in the dark. I was never so grateful for having decided to wear my hiking boots during this trip. Kind of odd, really, to wear them in the truck. Kind of extremely helpful though in these conditions! We bid our unknown neighbors “good night” as I hopped back into the truck whilst the sky was lightening slightly: morning was breaking.

By the grace of God we found the campground with the re-programming of the GPS and retracing our original steps. Funny, the campground was 1 mile from the State Park in the OPPOSITE direction than we had been instructed. Had not we mentioned we were coming from Indiana? Oh well. We probably drove right past the place on our first pass through the area. Chalk it up to the folklore of giving us directions with landmarks as if we were locals. Sish.

While the light was out that illuminated the lettering on the building, the other lights clearly identified a big building just 200 feet or so from the road. It was the office of the River Falls at the Gorge Campground! We had made it! A little more scouting, misinterpretation of a parking lot for the camp road, and final identification of our campsite out in the rain with the umbrelli brought us to a real stop for the next three days. Steve hooked us up and I prepared the inside for us and our pup, Elle. By 7:30 a.m., we were showered and asleep.

So what is the moral of this story? Probably nothing! We always seem to get lost trying to find our way in the wee hours of the morning in rural Georgia. Yes, this has happened before when we landed at the end of a road in the woods just before daybreak trying to find Phil and Judy’s place a few years ago. Maybe we will wait awhile before heading back to the land of boiled peanuts and peaches. Yeah, that’s it. Hey Babe, it’s time to GO WEST not South, my dear! JJ