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!
A transition was coming. I did not know that at the time. I longed for a change of some sort yet continued to struggle. And then the Lord moved in a BIG WAY. Did the man the Lord used to help me know the difference he had made?
I was two years into the role of a divorced woman and much of the rough road had become smoother. The Lord provided a cute condo just for me in a nice suburb of Chicago, a “little black race car,” and good job. Physical limitations required me to work 3/4 time yet gratefully my profession of occupational therapy pays well so I could still support myself. It was still a tough time in my life. The stress contributed to a back injury that put me out of work without pay then right when I might default on my mortgage payment I was able to return to work. Amazing. And that is how the Lord provided for me during a total of 3 tough years: just in time, right on time, and only after completely submitting to my Heavenly Husband and Father.
The Thursday night Bible study at the home of Pat and Mary was an important refuge for me during those years. Pat brought to life the books of the Bible with detailed history and applications that made a difference for all of us. He led us in prayer where we lifted each other up before the Father in the name of Jesus Christ; the love was palpable. Members came and went yet were never forgotten. Most of them knew my former spouse from years together in that living room. It didn’t matter later on. I am grateful that Craig led me to the fellowship that would make a difference then and even this past weekend. Here’s why.
His name escapes me of the younger-than me gentleman who was a part of the Bible study who offered to help me with my car. I understood that he was happily married with children and thriving in the IT field. I needed a new battery for my Honda Civic but could not find the money for it. Through Pat within the following week, I learned that the guy whom I barely knew had offered to pay for it! I was grateful and humbled. Life went on and the car worked great however I did not see this man again for many weeks on a Thursday night. I’m sure I sent a thank you note but never got to tell him in person the difference and encouragement that came from his actions.
And then my life changed again: my mother passed away. I was already exhausted from the grievous circumstances surrounding her death and, at the same time, grateful that I got to see her out-of-state the day before she died. Incredible. Then much to the surprise of my brother and I, she had left behind an inheritance that would meet all of my needs in the near future. Whew. Such a paradox! So many mixed emotions. I had no idea; I thought she had squandered her hard-earned income that came from years working as an office manager at Hercules Machine Tool and Die in the Detroit area. There was more leftover. My brother and I had more to focus on than this so we each proceeded as we thought best while dealing with our childhood home, his ultimate need to find another place to live, etc. An extended family member’s role saw to all of that for sure as my Mom’s chosen Executor of her estate. (No, that was not me.)
So I decided to purchase a new car! And then I felt guilty! So I sought the counsel of my Bible study leader who taught me to enjoy the Lord’s financial blessing yet hold it lightly. As a Christian the stuff of life has no eternal value yet we are to be good stewards of the resources bestowed to us. I tithed then proceeded with my purchase, enjoyed my saweet Hyundai Tuscon. Sure was nice having a good vehicle to take me to-and-from my new love interest in Indiana. Things started looking better in some ways, in others there was still a cauldron of confusing emotions.
The gentleman who bought me the new battery for my old Honda Civic showed up sometime later at the Thursday night Bible study. I was at the stage of purchasing the new car and trading in the old one, sharing my incredible mix of events. The look on his face seemed to express “incredulous.” Not sure if he was happy for me or sad. His donation of a new battery was now in the hands of an unknown party. The look on his face stayed with me for the next ELEVEN YEARS. Did he know that his encouragement gave me the courage to go on with my life? To trust in the provision ultimately of my Heavenly Father? I didn’t think so. And I never got an opportunity to thank this man in person; he left shortly after the end of our prayer time that night.
Eleven years later I ran into Pat and Mary at the Memorial Service of a brother in Christ: this past weekend. We laughed, we reminisced, we spoke of our mighty Lord and how He had restored the years the locusts had eaten in my life, twice! (Well, probably more than that actually!) My intended beloved, Steve, and I enjoyed a lovely time of fellowship with Pat and Mary in addition to many others who helped walk me through those important years when I worshiped at Village Bible Church; many were there on Saturday. Before we left I had to ask Pat one more thing: did the gentleman who bought me the new battery ever knew the incredible blessing he gave me? Did he understand that I really needed it at the time? That his actions gave me the courage I would need to move on when a time of financial restoration would follow, albeit quickly? Pat said that he did. He said that it was a blessing for him to help me. Sigh. Really? Oh Lord, I do hope so.
The gentleman’s name is Rich. Lord, please bless Rich and his family, work, and life this day. Let him know the generosity and goodness that you brought to me so many years ago and lead Him in your ways always. I pray that he continues to seek you and bless others with what gifts you have given him as he did for me. May our Lord be glorified in all this goodness that comes to any of us amidst the trials of this life. Your fingerprint is here for me, for Rich, and for you too, Gentle Reader. In due time for those who believe in the name and sacrifice of Jesus Christ, we shall be lifted up and made new one day, sharing in the glory beyond our wildest dreams. Tis a decision worth making, a journey worth taking. Thank you Jesus for Pat and Mary too. I pray that you bless them as well for their faithful teaching and living every day for You.
1 Peter 4:8-10 Above all, love each other deeply, because love covers over a multitude of sins. Offer hospitality to one another without grumbling. Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms. If anyone speaks, they should do so as one who speaks the very words of God. If anyone serves, they should do so with the strength God provides, so that in all things God may be praised through Jesus Christ. To him be the glory and the power for ever and ever. Amen.