We survived our Christmas holiday

He suggested a restaurant, I located a coffee shop, we could save money by making our own food, then 4 of 10 family members cancelled, so a local brunch place it would be for our family Christmas gathering!

I intended to meet up with them that Sunday the 23rd but the old beast I battle interfered then lo within hours they were in the driveway and headed to the backyard just moments after I’d made it out of bed! Thank the Lord I’d showered before my recovery nap; the gals had dressed in warmer garments so their greetings on the Wintry patio meant I could see my beloved’s wonderful adult children after all.

The gifting seemed awkward but we were generous all around anyways then whammo it hit and seizing returned body-wide in full view, right there in the open air: my winter coat and silent eyes all around me. Some had not witnessed this hell before . . . what the hell? I prayed as my body shook violently and slumped down into the lawn chair, with me still wondering why I have to be awake to try to figure out what I am supposed to do during these nightmares when I can do nothing at all?

A plan came to mind and when my body writhing stopped, I dangerously dashed for the sliding glass door whilst screeching from my loins how horrible this is, my deepest sorrow, and my love for them all. I still dunno if anyone heard my guttural tears that began as I closed the door and lasted for the next hour with episodes that returned as I dragged my body back to the bedroom to crash. Again. Then I wondered, where was Steve?

Sounds in the background told the story that they had all left, including my beloved, with them . . . No one had brought me any food (I guess I was sleeping earlier when they were eating lunch with the live Christmas band delighting their visit), said good-bye, or showed any concern for my welfare . . . until 2 of them texted me messages of concern hours later. Ah, the days of living by the (inadequate) communication of our smart phones! It was all I had so it was something I guess. Steve returned a couple of hours later to tell me they had gone on with their plans of go-kart racing. The pictures on Facebook told the story of the great time they had. Do I want to see them? Say what?

This type of unexplained episodes continued, preventing worship at a Christmas eve service the next night so I braced myself to spend it all alone. How could I possibly hold my husband hostage at home with me when a couple of his adult children remained in town? Extreme chemical sensitivity was about to take him down as well when he got to the church and it reeked of burning frankincense so badly he could not stay inside the building. So we watched the services together online at home . . . Silent night, holy night.

Christmas required extra rest before a simple celebration with my beloved: no decorations or fancy foods just some gifts and an appreciation of the meaning of this day that was more apparent for me this year than decades ago. Simplicity does that. Christmas is measured in moments, however small, when you focus on the love that comes from our Savior, Jesus Christ. The traditions are lovely when you have them too. I tried to be positive and loving to my amazing man who has been faithful through so much heartache and sickness from me. How can I possibly sweat any small stuff when he always gets the big stuff right?

Little did we know that we would both become very sick with the flu within 3 more days. We had an errand to run together, at the end of which my beloved was already fading with illness. I joined him within a day and gratefully after some cleaning and making a pot of soup for us both. We still had not gone grocery shopping which didn’t matter since neither of us could eat hardly anything. That didn’t change much as the worst of this flu lasted FOUR DAYS!

Steve has started to surface back into life as he did some online studying; today was my first day I could stand in the kitchen long enough this evening to roast some chicken apple brats in the oven. Yeah, finally I wanted to eat a little more again after incredible pain and nausea lead to the loss of 3 pounds. I started to talk in complete sentences today while bracing my neck, rib cage, and abdomen when out of bed, yeah, afraid of making worse the new hiatal hernia and gastritis diagnosed 2 weeks ago. Can you say “I feel like a basket case?”

By the grace of God we survived our Christmas holiday. My beloved spent half of his vacation time from work battling the flu and barely seeing his adult children visiting from out of state; I never really recovered from this whack-a-this-or-that. This Winter illness is going to take me a few more days from which to stabilize . . . but interestingly the seizure attack episodes that flared at the beginning of our holiday week are down again. Yes, they are down! I have just found a way to take some nutrients that have been critically and chronically low and which are likely a major contributing factor to the convulsive episodes. To become seizure-free would be my desired earthly gift this new year. Thank the Lord we made it to 2019!!!!!!!!

We have been here before, you and I, Gentle Reader, dozens of times with my stories of hope and heartache and hope and heartache again. Call me a Weeble that Wobbles but she don’t fall down, I guess. Are you hanging in there with me too? Jesus makes the overcoming all possible in the end you know. (Please excuse my wee bit of humor, my Lord. Unlike me, you never falter.)

Gentle Reader: I pray that you did a bit more than survive this Christmas too. Happy new year? Oh yes, happy new year it is going to be! JJ

The Trip That Wasn’t

The best plans with reservations and all

Lain ready for some last minute cooking, packing, and prep

We would camp in the rain in a humid State down south

And see my Dentist, my Aunt, and maybe a friend.

But as much as we tried to make it all happen

This trip was simply not meant to be this time around.

Ten days ago I got pneumonia and treatment began thereafter

Oral antibiotics then IV infusions of same

With more drugs than I care to mention to manage the symptoms.

I had forgotten since my last bout with same in 2009

Just how dangerous and devastating a lung infection can be.

So rather than risk infecting my Aunt with her own health issues,

And delay my own healing with the rigors of 4 day-long car rides

We won’t be going nor helping out my Aunt until much later instead.

This isn’t really a poem, just some prose to get it out of my head

I am exceedingly disappointed, confused, and not sure what to do instead.

Rest of course.  Try to get our home back in order from being away at the hospital each day

Let go of the questionable care from nurses who didn’t know or care that much about me

And rekindle the love with my River Bear who makes it all alright anyways.

How can one make sense of plans gone awry:  it just doesn’t seem right

Well my Lord’s already there, so in Him I will trust.  He’s had my back every other time!

JJ

 

Anticipation

One could say that the days before a cross-country trip are usually filled with a multitude of tasks and anticipation of the good times to come.  I’ll give a “yes” to both accounts and now we are back from coastal Alabama with pictures to share.

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Paddling the Stellar S16S felt good in Perdido Bay off Alabama/Florida waters

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Steve and I congratulated Elizabeth and her husband Daniel as she earned her wings to become an Army Blackhawk helicopter pilot

 

 

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Our happy travelling companion Elle

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Elizabeth piloted a helicopter ride for each of us after graduation. Awesome!

I did a lot better travelling this past week than our last trip in November of 2015, that is for sure.  I was able to attend all but one planned activity by pacing myself, meticulous planning, and some improvement in my overall health.  The convulsive episodes that still accompany the serious illness I am battling kept themselves largely to the overnight hours and travelling in my truck.  And they were much less!  Yeah God!  It’s amazing how much life can fit in between the setbacks these days . . .

Now that 11 loads of laundry are done, the travel trailer and vehicles are cleaned, and even some garden chores completed I am ready.  A nasty new treatment begins later this week.  Resuming the infusions of IV antibiotics, a few scheduled appointments, grocery shopping, and making sure our support systems are in place come first before the darkness falls.  It really could be that bad.  Or maybe not?

They say that breaking up stealth biofilm and killing protomyxzoa rheumatica (formerly known as FL1953) can render a person useless.  Or bedridden.  Or really, really sick.  Then after around 4 weeks, there can be miraculous improvement.  My trial run 2 weeks ago of 1 capsule of the anti-fungal brought dizziness, light-headedness, and cognitive slowing.  My Lyme Literate Medical Doctor was thrilled when I told him.  (He is kind of kooky that way!)  “It’s affecting your brain!  That is good!” he exclaimed in a way that only a master diagnostician can.  Oh boy.  “I wonder what the full dosing will be like?” was all I could think about.  And how will I eat?  Get to the bathroom?  Keep up with all of the treatments while home alone when Steve is at work?  So many questions remain unanswered at this point.

This is what I know for sure.  In a way, the break in treatment for a week of vacation came too soon.  I was not ready to go without the IV antibiotics and daily routine that has facilitated this turnaround without some extra struggle.  There was a lot of stress amidst the good times.  In another way, the break fed my soul!  I got to see what living was like for everyone else while being with everyone else.  I got to kayak with my beloved River Bear . . . . TWICE!  I did more than one thing each day and did alright trying to do so.  When we got back home I got to work in our garden two days in a row.  Wow, Lord.  Then I read an adventure novel in 2 days!  How lovely it was to immerse myself in a bit of life again.

So for the unknown treatment coming in a few days I will say this:  bring it.  I have faced worse than lumbrokinase and prescription Lamisil.  I will go slow if I can and employ every herxheimer (aka die off) remedy I have in my arsenal if needed.  The Lord has brought me through near-death experiences, daily hell on earth, despair beyond belief.  I have been given a taste of life again to encourage me and those around me as well.  It is time to dig a little deeper, literally.  We have found The Beast in the recesses of my brain tissue.  This is war.  Lord willing, I am going to get well.

If we don’t chat for awhile, please pray for me and Steve, k?  Thanks a bunch Gentle Reader.  I am grateful for you.  With love, JJ

Julie BH Crop

The trip of faith that made a difference

DSCF7473You will find a tale of two contrasts in the top photo:   Aunt Lori and I in our outrigger canoe paddling in a bayou, Tarpon Springs, FL; and photo below:  wearing a respirator mask in my home.

Here is evidence of the victory over illness that began when we traveled last week from our home in Indiana.  I was able to paddle a decent length for the first time in over a year!  And paddling in our OC-2 was particularly sweet as my husband had just finished repairing the hull.  (It was damaged at the USCA Nationals in 2011.  The risk of racing, I understand!)

The escape of faith started with a lovely visit with my husband’s cousin, Christine Oswald and her family in Atlanta, Georgia.  Their four girls are adorable!  From there we travelled to Florida so my husband could participate as the Indiana delegate to the United States Canoe Association.  Meanwhile I gratefully enjoyed having lunch at Hellas on the Sponge Docks:  authentic Greek food that matched my narrow dietary regime.  Amazing.  From DSCF7517Tarpon Springs we made our way to remote Patrick, South Carolina (near Florence) to the hideaway log cabin of Ed & Kinsey and little Gunnar Artfich.   We really enjoyed some meaningful fellowship and are pretty sure we now have the answers to Obamacare, gun control, and preparing for the End Times.  Thanks guys.

Preparing for the trip was a nightmare as I had a neurological collapse earlier that day, two medical appointments, was recommended not to drive, drove anyways to the grocery store, and cooked my special foods for hours with the windows open.  The latter was to attempt to minimize the exposure to mold enough that I could prepare the special anti-seizure diet and pack as needed to get away for a few days.  I was sooo sick!  The Lord gave me a supernatural dose of adrenaline to start the process then finish the next morning despite a “hammer headache” and seizure attacks.  This gal was getting out of town if it killed me!

The trip did not kill me.  The trip began to restore me.  Within 48 hours, all of my symptoms had either diminished or temporarily reversed.  The antibiotic and fungal medications started to work (thanks to a run to CVS pharmacy at 2:30 a.m.!  Too bad the credit card got cancelled because we were out of State.  Sometimes I wish computers didn’t think so much!)  I had mini flare ups here and there.  HOWEVER, THE PATTERN OF DAILY 3-4 HOUR SEIZURE ATTACKS AND COLLAPSES WAS NOW BROKEN!!!  This is the miracle for which we desperately prayed in the doctor’s office on January 8th.  We praised the Lord and had a great time.  I finally started to sleep a little more too.  Amazing.

We are now in the reality of returning home.  My last post reflects the crying and feeling of being overwhelmed that has characterized these last three days.  I arranged to stay in a hotel-with-a-kitchenette for two nights beginning at 4:30 a.m. when I got there.  Steve went home as he was getting a sinus infection and needed to take care of things at our home then return to work the next day.  Turns out that I would not see him again for almost 2 days, too long.  While traveling, we were without internet access for the first half of out trip then was finally able to share a prayer request of our need for a place for me to stay.  We are one accord that I cannot live in the house that is killing me!  We had begun the process of filing a claim with out homeowner’s insurance since the mold causing the severity of this illness was from an incomplete clean-up of water damage by a restoration company in January of 2009.  The immediacy of the housing need and time of arrival back in Indiana necessitated a hotel expense.

After much prayer and consideration in my “lost” state of mind, I selected the home of one of two friends that appeared to meet my needs:  no water damage, no chemical fragrances, kitchen access, and distance from the internet router (an issue for some folks like me with Lyme Disease).  I unpacked, made a late dinner, and went to bed around midnight.  At 4:22 a.m. I was awakened by severe seizure attacks that would not subside!  Oh no!  Fear gripped my heart.  I don’t want to go back there!  What shall I do?  What is causing it?  I stayed up for 2 hours then went back to bed, hoping to catch my host couple in the morning.  The seizure attacks returned and sleep alluded me.  The old “hammer headache,” ringing in my ears, stomach ache and more began to escalate.  We really never figured out what caused this surprising setback:  was it the iron bacteria in the water or some residual from a basement flood 9 years ago?  With sadness, I had to pack up and head back to the hotel.  There I was able to sleep peacefully once again, albeit a short time until the next appointment this afternoon.

Our “ace-in-the hole” to meet a housing need for the estimated 2-months needed for the mold restoration project was the newly renovated home of another couple we know.  Sounded like it would be ready within 2 weeks and sitting empty until it would be sold in the Spring.   We toured the sweet, older home by a lovely wooded park; everything inside was to be new.  Unfortunately we found an area of drywall in the basement that had been cut away due to mold damage.  All it took was our friend tapping on the tattered insulation in the basement-smelling basement and I was in crises.  I went outside for some fresh air, stepped back inside by the screen door, then hurried back out before the major collapse ensued.  Gratefully I was able to yell for Steve.  By the time he reached me in the side yard, my gait was stumbling, I was crying, and the seizure attacks were ramping up.  All I could do was blurt out, “I’m sorry, I’m sorry” and yield with horror to the loss of control of my body.  Steve assisted me to the car and transferred me back into the passenger seat.  Decision made:  can’t live here!

Sometimes a burger at Five Guys Burgers is just the ticket.  By the time we got there, I was slowly regaining motor control and my speech rate was returning to normal.  The headache was subsiding and the embarrassment, well, still there.  Thank the Lord that beef is o.k. on my diet once per week!  Five Guys Burgers are organic beef you know!  Even sipped my husbands cherry coke twice.  I needed comfort big time!

It’s now evening and I’m sitting at my home computer with my new respirator mask digging into my face.  This is the only way for now that I can do anything in my home of the past five years.  I gathered a few more things to take back to the hotel room and am grateful that Steve will be joining me tonight.  Oh how I miss him when he is away!  Thankfully my Heavenly Husband was my companion when I needed him to make most of these moves with all my provisions and luggage, up a flight of stairs.  Thankfully I own a truck which makes it all a lot easier.

This continues to be a wild ride.  And yet, the miraculous answer to prayer is here.  With great expectation and no clue as to the next chapter in this saga, I will leave my home again tonight.  Sure miss being with Steve each day and even my dog, Elle.  I do know this, that the Lord knows the desires of my heart and has granted them in marvelous ways in the past.  Exceedingly.  He has not changed and never will.  Thank you for joining me in prayer and faith.   (Reference:  Proverbs 3:5-6, Jeremiah 29:11)