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.
They should be alright after about a week in the heat, right? Ugh.
Usually when “the bus driver” and I come home from a camping trip, we empty the travel trailer of all food that very night. Of course it may be 3 in the morning but it all comes out nonetheless. Not this time. This time was very different. The unopened bags of chips are still in the storage compartment underneath the bed and we have been home for SIX DAYS! Gratefully the ants on the driveway have not found them yet!
I really don’t know where to begin to tell the story of our attempt to bring a family member here from out of State to visit, to maybe live with us. This was a huge undertaking for all three of us: a journey that began over 6 months ago that was actually cancelled the first time around. Perhaps it will be best to unpack the situation in a few blog posts over time as I begin to recover from what was largely a failure. But there is good news: my Aunt is healthier, stronger, more mentally sharp, conversant, happier, and overall functioning significantly better than when my hubby, Steve, and I picked her up in Florida 8 days ago. As for me, not so much.
Last night was one of the most horrific scenes of recent memory. After a total of 12 hours finally getting some errands done with a late night Doctor appointment too, I had the most frightening convulsive episode imaginable. My threshold of reactivity had been plummeting with each passing day that my Aunt was travelling or living with us. We had taken extreme mold avoidance procedures and she was wearing all new clothing that I had specially prepared for her. Her belongings from Florida were cleaned and secured in plastic storage bins in our garage; only doubly-freezer-bagged supplements and medication were in the house in a remote closet. She lived in an inadequately maintained and moldy living environment laden with the fragrances that most women like. We took extreme measures with her stuff but never considered the detoxing of her body to be the toxin most noxious to me; her skin scent reflected several different problems beyond hygiene and no amount of bathing or washing of linens/clothing was helping me fast enough. I crashed fast. She, on the other hand, (in our very clean and climate-controlled home with exceedingly healthy meals, rest, and loved ones nearby) quickly regained skills and energies she had lost in the past year.
I was unpacking groceries from our local Meier when an odd feeling hit me. The warning signs that I learned to recognize in the past when at my sickest with this complex/biotoxin illness had changed. The odd symptoms ramped up so quickly into involuntary full-body shaking episodes that I barely had a time to get to a safe position to prevent injury. These kinds of episodes are very dangerous! So I was standing in front of a counter filled with plastic bags of groceries when my eyes drew in to close and all I could do was kind of lean-and-cling to the edge of the refrigerator as the convulsions began. They went on and on for at least 20 minutes until my husband would discover me and carry me to the bedroom. The repetitive oscillations injured my spine from one end to the other. I could not move my body and was terrified of falling. Trying to relieve the cramp in my right calf triggered a rebound, a worsening of the episode. I just held on . . .
Things were no better once lying down. The involuntary shaking traumatized my neck and my body temperature began to drop. I could not speak when I needed to and breathing was difficult. Time either stood still or passed along quickly, I have no idea which one. I couldn’t even cry out my angst until much later. Then the visual anomalies began of swirling shadowy circles on the ceiling of our bedroom. Steve left and returned a couple of times as he tried to help figure out just what caused this and more importantly, what to do to make it stop. He sniffed my clothing and found them to be musty. That discovery pointed to my hours trying to get special requests for everyone at the grocery store — a water-damaged building that was problematic for me before their remodeling. I guess it is still a problem! My Beloved removed my soiled clothing and the amplitude of the shakes lessened. But by then the weird, demonic-like writhing and vocalizations had already begun. It is terrifying to endure this hell. I prayed for the Lord to take me. I searched for the white lights but did not find any. Three hours went by before I could function again . . . what was left of me, that is.
Repeated biotoxin exposures had lowered my threshold of reactivity. I was at the lowest point, last night, after doing significantly better these past 5 months. Looking back it all makes sense: cumulative exposures began when helping my Aunt for five hours on each of two days to do laundry and then pack for this trip in her moldy State of Florida. It rains there every day now and she has had water damage in her condo several times without remediation. I wore a charcoal mask during our time there but the conditions were still unbearable. (Even Steve agreed and had some symptoms.) Have you ever had to wear a mask in 90 degree heat and humidity while doing physical and emotionally exhausting work? I had a stress rash on my chest, at least 12 irritated mosquito bites, soreness from dental adjustments from my Craniomandibular Specialist in town, and to deal with a cognitively impaired and severely anxious family member who still struggles in facing her brain disease. The process was exceedingly painful, frustrating, exhausting.
In another post I will outline the procedures that we used to attempt to implement extreme mold avoidance to be able to care for a family member in crisis. We simply could not leave her in Florida any longer. For today, I am grateful that I did survive last night because I got to see a miracle in action. No, it’s not only the organic lime corn chips that are alright tonight. I am completely exhausted yet stable and have not had any episodes since she left our home around 10:00 p.m. (and I cleaned, tossed bed linens and other things out of course). This is the first time I have been stable in 4 nights. The miracle is that when I was able to get out of bed at 5:00 p.m., my Aunt’s friend from Michigan had arrived and was sitting with her on our patio outside. Well hello Dean! He was offering to drive her back home to Florida. While I disagree with many aspects of this arrangement, I was in no position to decline a solution that could help stabilize me: her now former caregiver in crisis. She left with him after some dinner, some packing, some very sad goodbyes. Our visit wasn’t supposed to end this way!
Looks like the chips and me are going to be fine in a little while (as the bags are still out there in the Camplite in the driveway). Steve is grateful for the possibility of a full night of sleep. We shall recover. I am grieved that things didn’t work out with my family member and for the torture I had to endure trying to care for her. I am glad that we could give her the gift of renewed health; that I discovered where I am at with this ongoing illness; and that our Lord is there to carry us, to act, to make His presence known no matter how hot things get in our lives. Please join me in praying for my Aunt. Dean won’t be staying with her very long and . . . I had to let her go from our care.
Well I gave a detailed rationale in a recent post for me pursuing TMJ/TMD treatment to help alleviate intractable seizure attacks that have plagued me for the past 6 years. Basically if the cranial nerves that exit the brain at the top of the neck are pinched from tight or misaligned muscles and tissues around the face, neck, and jaw then pain and a myriad of neurological problems can follow. A physical trauma, especially auto accidents, often starts the problem. Dental professionals who specialize in this area can provide relief for movement disorders such as Tourettes Syndrome, Parkinson’s Disease, tics, dystonia, and atypical seizure disorders using various dental appliances and therapies. My research into this began a few weeks ago after an Ear Nose and Throat Doctor suggested I look into issues related to one of the twelve cranial nerves (vagus); I found that my symptoms involved seem to relate to several of them and require a broader, more functional bio-mechanical perspective.
Sooooo, since TMJ pain began for me after an auto accident in 1996 and worsened with convulsive episodes beginning in 2012, I brought up this topic with my chiropractor and brilliant primary care doctor this week. Both agreed that specialized dental appliances are a good avenue to pursue. Both have provided supporting medical documentation to support my case and the latter reviewed the Curriculum Vitae of the Dental Specialist that I have selected (after interviewing 13 dental professionals from around the country!). My hubby and I are prayerfully preparing to proceed accordingly, with faith and confidence that the treatment will be effective in due time.
Once we made the decision, we had no idea what would happen next. There are significant unknowns in this process, not the least of which is a significant financial commitment for specialized care out-of-pocket and for out-of-state travel for nearly 3 weeks. We just knew that I needed a new treatment direction and that these new interventions seemed compelling to address many problem areas (’cause hey, even chewing food can trigger episodes!). The next steps were for Steve to approach his employer for an extended leave of absence and for me to start scheduling appointments, making campground reservations, contacting family in the area, and so on. Gentle Reader, it’s only been two days and the following blessings have already come to light:
Steve’s employer granted his request for a leave of absence and will provide a company computer so that he may work remotely while we are away. Harris’s company headquarters is about 2 1/2 hours away from my new Doctor’s office by car and for the second week of our trip, Steve will be able to share an office there with a former coworker he knows who transferred there 2 years ago. Awesome! And guess what? His employer is located near the Kennedy Space Center where Harris will be launching a ROCKET FROM CAPE CANAVERAL right in the middle of the 4 days we will be staying in the area! Holy cow! How cool is all of that?
Just a week ago, I finally was able to get in touch with a best friend from my childhood with whom I have not spoken in around 37 YEARS. Guess where she, her sister, and her Dad live? Very close to the same town where I will be having my treatment! They were a huge part of my growing up years, especially after my parents were divorced when I was barely a teenager. Tammy and I spent hours playing house or school on her back patio after dragging outside a myriad of furniture and supplies from both of our homes. Sometimes we had just gotten things set up and her mom would come home from work so we had to put it all away again! Then there was the backyard carnival we made to raise money for the Muscular Dystrophy Association. Her little sister, Patty, dressed up like a gypsy to give words of wisdom in the “fortune telling” pup tent! Their Dad was so very sweet to me when I would see him working in the yard, carrying tools along the sidewalk between our houses. His kindness was very comforting at a tender time in my life. All are good memories indeed. I look forward to seeing each of them!
If that wasn’t enough, we also hope to see an Aunt of mine who has lived in the area for decades. Steve and I last visited her 5 years ago when I was near the beginning of this illness. When I talked to her on the phone about maybe seeing her, she disclosed that she is struggling with a serious brain disease and having difficulty functioning. My heart sank. She explained quite candidly that her ability to perform activities of daily living has become increasingly compromised over the past year such that she doesn’t want to live alone anymore. She has not been able to obtain assistance from her medical providers in obtaining the supports she needs. It is not clear how aware my two cousins are of her condition; I may be the first person to visit her home for many years as all of us live 1,000 miles or more away. My heart is breaking for her while my mind as a licensed occupational therapist is churning with the possibilities of what this all means. Steve and I will start to sort this out by going to visit my Aunt with the goal to simply love on her, bring a meal, and visit for awhile. Lord knows what will follow thereafter, likely some phone calls to my cousins up north . . .
Gee, if all of this has transpired in just 2 days, I wonder what awaits us in the next week? We are praying continuously about everything mentioned here as we begin to make our travel arrangements. There are repairs needed on the travel trailer and much to do. What is certain though, is that our Lord Jesus Christ is already paving the path before us. He always does, of course, and this time we are in awe as we can see it unfolding as we speak! Very likely we will need to raise some funds for my care so stay tuned for the details and please pray with us as we embark on this magnificent adventure. I have been through dark times before and have seen the Lord miraculously “restore the years the locusts had eaten.” (Joel 2:25) Sure looks like He is moving again in our lives right now in a big way. Thank you for coming along side me with each post here, each little tear. You make a difference just being there reading this, tracking my story. God bless you for hanging in there with me!