Never could I have ever imagined that I would spend the better part of the 5th decade of my life battling a serious illness. Then on cue from the Masterful Maestro, Jesus Christ, a few tweaks in 1 type of medication and 2 supplements began to turn things around. What has transpired seems miraculous to me.
31 symptoms aren’t as bad right now as they were when I wrote them down on December 29, 2018. A few more are gone.
23 triggers of sometimes violent, convulsive episodes have diminished in severity as they were when I wrote them down on December 29, 2018. A few more are gone. A few days per week I have none.
And in a matter of a few hours from now, at 6:13 a.m. to be exact, I will be able to board a plane all by myself to head back to Rochester, Minnesota and the Mayo Clinic. An aggressive schedule awaits me for my follow-up treatment and medical visits. I’ll stay in a special condominium that will accommodate any ongoing chemical sensitivities; I’ll even learn to Uber and Lyft. Yay!
I am hopeful that things will turn out alright. I am slowly getting stronger and pain levels are coming down with various therapies that are finally working! Master Gardening activities are ticking up and I have a sewing project that I work on in the hours when I am feeling better. Call it my transition back into life.
What a good feeling. Thank you Lord for seeing me through to this day. Thank you also to my beloved, Steve, who has faithfully walked with me during thousands of dark days and nights. I am so blessed. Restoration is coming at last and I am as humbled as I am grateful.
Lord, please hold my heart and my hand as I make this trip. Let’s go! JJ
And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
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 . . .
Seven years ago this night, I contracted viral hepatitis kayaking in a local reservoir, beginning what has become 7 years of serious illness. Yet today passed with more of a sense of gratitude than mourning the lost years. May I share the good things that came from this journey?
Learning to blog, beginning in the summer of 2012 and continuing to this day.
Meeting some dear friends in the chronic illness community in relationships that 1) began locally and have continued to this day or 2) transformed from online to face-to-face either electronically or in-person. Love you ladies!
Learned how to develop simple websites for e-commerce, blogging, and marketing for myself and others.
Supported my husband as best as I could in his distributorship of performance kayaks and gear: River Bear Racing.
Became a Master Gardener and advanced within the ranks with as many in-home projects as those in the community.
Became an Assistant Editor of the United States Canoe Association publication called Canoe News under the tutelage of the handsome Editor and husband named Steve!
Recently became Editor of Across the Fence for the Purdue Extension Master Gardener program. This required a crash course in another online program: Microsoft Sway.
Became a better cook and homemaker/helpmate to my beloved Steve as I have been increasingly able to do so as the years have progressed.
Became my own patient advocate, occupational therapist, care coordinator, medical billing and records specialist, and health coach. Sure, I hired a Naturopath for epigenetic counseling that was beyond my brain fog to understand yet kept in-step with as much of my care as humanly possible: seeking answers and finding some too.
Learned to camp via travel trailer aka our mobile clean room! We are grateful for the Lord’s provision on this one.
Taught myself via online videos to sew upholstery for our patio and the travel trailer.
Learned to grow vegetables and native plants; working on a community rain garden project for the near future.
Experimented with a some volunteer work for our community park this Fall that really stretched my abilities and tolerances.
Kept my occupational therapy license current with online continuing education, review of pertinent literature, and following the latest issues-and-trends in my profession.
Trialed being a caregiver to an elderly family member. Didn’t succeed yet worked very hard in this role for six months earlier this year.
Became a writer!
Fell more deeply in love with my intended beloved, Stevers aka River Bear.
And most importantly, grew into a vital relationship with my heavenly Father, heavenly Husband, and Savior Jesus Christ. He is my rock now and forevermore!
How did all of this happen when experiencing daily convulsive episodes and its consequences virtually every day for 6 1/2 of these past 7 years? Well that’s just how good our God is, Gentle Reader. Little was done in my own strength in the most wretched of months. The episodes in general aren’t as bad these days as long as I stay away from the worst noxious stimuli to which I am sensitive and plan rest days accordingly. They aren’t gone yet. I’ll write more about a recent setback soon. Gratefully, the reactivity has come down quite a bit; I can see marvelous progress. Yeah God and praise the Lord for His mercy and grace!