Gathering medical records and other documents, making travel arrangements that accommodate my sensitivities, and putting together a timeline of the serious illness I have been battling for 8 1/2 years has been an emotional process for me. Just surviving to this day has been a traumatic experience. The blessings are there too yet not as clear right now with the hundreds of sheets of medical records behind me as I type this post.
I have endured so many dead ends and dashed dreams for recovery, physical damage from thousands of convulsive episodes, tens and tens of thousands of out-of-pocket expenses, and so many losses on every front of our lives. One truth is clear that I would not have survived this far without my faith in our Lord, Jesus Christ. He was my Rock when my breathing would not start in the darkness of night or my legs would not move to get me to the bathroom. Both my beloved Steve and my Lord carried me through it all to this moment in time.
Regardless of what has gone before us, Steve and I are pressing forward, hopeful for a good result at an upcoming consultation at the Mayo Clinic. For the first time since the onset of this serious illness, I get to see one of the top Doctors in neuroimmunology at THE top medical facility in the country. That is humbling. I am grateful.
Now is the time to pray for a cure to the daily convulsive episodes. Lord willing, I will be well! Thank you for your love and support, Gentle Reader. Love to you, JJ
We’re home from our whirlwind trip to Florida that almost didn’t happen so soon after being diagnosed with new gut issues then battling the flu followed by it’s aftermath for 2 weeks thereafter. We did it anyways! Four long days of driving for 3 days in the Sunshine State. Here was our itinerary:
4:00 pm January 9th decide to pursue reservations and plans to go to Florida; finish seemingly endless packing, food and other preparations.
2:00 pm January 10th: Elle pup is the first in the truck as we depart Huntertown, IN for the campground south of Atlanta. Arrive around 2:00 am.
1:00 pm January 11th depart for Seminole, Florida. Arrive around Midnight. Set up our campsite at Bickers RV Park.
9:00 am January 12th was Steve’s first day of the USCA Annual Meeting. I rested from various convulsive episodes en route and travelling.
6:00 pm we make our way to the banquet at a seaside restaurant. Had episodes later yet I was grateful for a dinner out with my beloved Steve.
8:30 am January 13th: Steve heads out for the wrap up of the USCA Meeting, lunch, and paddling 6-man outrigger canoes on the ocean. Great fun!
11:00 am My day begins with self care, laundry, doggie care and some time sitting outside. Some restoration begins, however convulsive episodes persist at night. Make pre-planned dinner anyways and prepare for appointment tomorrow.
10:00 am Appointment with Craniomandibular Specialist, Dr. Ralph Garcia, for adjustments to dental appliances. Begin to question where the 80% improvements of last year have gone? Drop off thank you gift to a friend, lots of driving in the Tampa area, and fit in a 45-minute walk along Clearwater Beach before returning to the campground. Even 60 degree weather could not keep us away! Episodes were discouraging to both of us later that night.
11:30 am Pack up and depart for Chattanooga, TN. Arrive after midnight. My Nissan Frontier is a workhorse yet requires stops for gas every 110 miles! Elle pup made the entire trip nicely.
1:30 pm Pack up and re-winterize Camplite for our return to freezing temps back home. Depart for Huntertown, IN by way of Nashville.
3:30 pm EST meet up with Steve’s sweet daughter, Rebekah, for early dinner. Ramp up of convulsive episode at older Thai restaurant prompted me to leave, scramble to the truck, and take some Prednisone. Episode resolved (meds prevented further episodes later on this night), so we head to Panera Bread across the street for a nice visit. Got back on the road around 6:00 pm.
3:00 am arrive home and start unhooking the travel trailer, unpacking, decontamination procedures, urgent laundry. Grateful for the ability to do all this work on a short night of sleep followed by long days of travelling. The Lord added His increase once again!
5:30 am: heading for bed with prayers of gratitude for safe travels, the Lord’s provision of this trip, some sweet moments, and fewer symptoms between us of the flu/cold that began 3 weeks ago. I’ll spend the next week cleaning the Camplite, doing laundry, restocking, and reorganizing as required when camping in our “mobile clean room.” Maybe I’ll get to finish 2 sewing projects for the bunks soon too?
How amazing it is that I got to go to Florida! “Warm sunshine” is very therapeutic as is getting a change of scenery. Yeah God! I love travelling with my Stevers. My heart is filling back up again . . .
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