Moving from a city of 8 million people to this big-little area of 300,000 where I live now was a huge undertaking in 2007. The occasion was marrying my Intended Beloved, Steve. The leap of faith required to do so was tremendous: almost everything in my life changed that year including those related to the death of my Mom in March. The process of grieving then leaping off into a new direction was downright painful at times. And now 15 years later can I still say that embracing Steve during the same year was one of the better decisions of my life. The Lord has blessed me so much by my beloved Stevers!
You could say that my story is like taking an aerial photo in a Piper Archer. The reality for me is that down on the ground, the highs and the lows are one dastardly beast to navigate at times. I lose a couple of days per week to a sickness that started in 2011, then rally, or rather scramble, to put my life in order on the rest of them. The stuff of life still needs to be done even when battling a serious illness. Steve does what he can to help me out, especially when I am in a crisis, but he can’t do everything. Nor would I want him to do so. A little more maybe, but not everything! We have learned the value of compartmentalization: setting aside the challenges of a given day when we need to focus on a more important task together. For example, when my care needs are significant, we cannot bemoan our latest disconnect or household repair even if it’s a painful or expensive one. Steve is the only one who can bring me a rescue remedy when I am frozen in a convulsive episode. He is gracious towards me at these times and for this I am exceedingly grateful.
Taking an aerial view of one’s life is helpful at times. Climb to 4,000 feet and sit away from the clouds, the storms of life while connected to the grandeur of the world in which we live. Dwell on the Lord’s goodness and His marvelous creation! Eventually we will land our plane back on earth but why rush things? The question becomes how to avoid crashing and burning or perhaps going crazy when the flight gets bumpy along the way. No worries! Whether climbing or descending into the various situations of our lives we must resist being bounced off-course by heated or cooled thermalic conversations, the cross-winds of life’s technical problems, static in our headset or bodily gear, and limited fuel energies. Not losing sight of the bigger picture is critical to managing these challenges. Not losing sight that the Lord our God is in charge of it all is critical to overcoming these challenges. He has a flight plan and will reveal it to us in due time for He IS the pilot in command!
It’s only with a longer view fixed on Jesus Christ that we will come to understand that what we may label as a detour is actually the best course after all. I need this reminder this evening. There was a nasty fire in the cockpit so-to-speak of our evening that was so bad, my co-pilot in life had to care for me like I was an invalid. I wept in between bites of food that were difficult to chew even cut in small pieces and fed to me with a spoon. I was that weak after yet another violent convulsive episode. The repairs and mold remediation going on in our home for the second time in 9 years somehow triggered the collapse. On one hand I grieved that this hell on earth was still with me, still with us. On the other hand, I was grateful that I had a choice of rescue remedies/treatment strategies plus a skilled caregiver who knew what to do to help me. These took many years, many “flight hours” to develop. Steve is an experienced and capable pilot. The episode lasted a couple of hours before I had the strength to safely get out of bed. By the grace of God I finally got to the bathroom. By my Lord’s power the nightmare ended.
I am now awake and alone well after midnight as I write this tonight with many questions and few answers. Evidently it is still not my time to recover from this serious illness nor to die from it either. I do have some more, new treatments that are promising; they are enough to pull me through the turbulence at times in my own aerial view. There is so much goodness beyond my bed of sickness that I do get to enjoy these days at least once per week. And ultimately I have the hope, the peace that comes from His promise of a glorious life beyond this one in eternity with my Lord and Savior, Jesus Christ. In fact, it has already begun . . .
Would you like to have this hope too Gentle Reader? Jesus Christ is more than the best pilot around. He is God! Entrust yourself to no other really. JJ
If ever cycling was a thing in chronic illness then the one that goes with the emergence of a full moon is my worst. What a night from hell it was yesterday.
The new spritely Doberman mix youngster whacked me on the forehead when she jumped up suddenly. It felt like a head injury. Stars and stunned. Soon came the gutteral cries, gasps for air, and profuse drooling as I braced myself against the kitchen sink. I could think of nothing else but to hold on, try to breathe. Steve heard me and asked if I had a leg cramp. I could not speak for a very long time. I was seizing. It was terrifying.
About an hour later after much weeping, rebounding, being carried to the sectional, and 60 mg of Prednisone, my mind began to clear. No really it took 2 hours. I needed water and food and to go to the bathroom and serious help from Steve who sat nearby, trying to figure out what the hell was going on, what to do or not do. It was awful for him as well. We simply endured.
I am crying as I write this. I have spent this past day moving gently and taking a long time to do basic tasks. Very deliberately, very carefully, and certainly with much caution where Bella pup was involved. Did she know? Later last night she did lie beside me on the floor. Our other dogs never did that for more than a moment. Isabella has only been in our lives for 7 days. She’s a different kind of beast for sure. I wish I could say the same for myself. At this moment I feel like I am slipping away from my former sameness . . .
In the midst of the rebounding into more episodes when simply trying to adjust a blanket, I asked the Lord to take me home. Please take me home. I gave him my gardening, our marriage, this home. It just hurts so badly to be awake when hell breaks loose in your body and you have to watch it, helplessly. He said no. It’s not time yet. My mind went blank for all of the implications of living on until the next violent convulsive episode rips through my world. It’s complicated. It’s just so very hard.
So if the answer is no, not yet, keep going, that’s just what I will do. That’s just what I did today. He gave me the strength to take care of the dog, the laundry, some bills, cooking, computer stuff, and finding my way back to you Gentle Reader. How are you tonight? Today?
Perhaps some joy or even happiness will return to me at some point. Just for today all I can say is that I am blessed to be struggling with this mess in a situation where all of my basic needs are met well. In this place I will start the next cycle of the moon. And keep experimenting with ozone water. It did help me sleep better quite a few days and improve enough to get some tasks done that have been harder in the past to do.
Just keep going. Sometimes it’s enough. Isn’t she adorable? JJ
Initially I suppose it’s like when a balloon breaks. There’s a pop then a blubber when the rest of the air rushes out. The rubber skin is thin and gives way all-at-once except for the last little bit of air. The spent orb lies limp on some horizontal surface never to have value again. How unlike the balloon we are when we are popped into shock then deflated by trauma. With the Lord’s help, we can bounce back!
Emerging from a violent convulsive episode, the kind where I am awake and cannot breathe or move, has the effect of popping my mind into a state where I cannot communicate. My Doctor described it as a dulling of my ability to think but that’s not what I experience. When I am struggling to breathe and ANY initiation of movement, even from my tiny vocal cord muscles or diaphragm trying to produce speech, throws me back into seizing. I have to ride it out for a time. Sometimes I have to cough to re-start my breathing reflex. Through it all, I have to evaluate if I can blurt out any intelligible words and if it’s worth the probable blow-back, rebound of seizing that follows. And when I do speak, I choose the fewest number of words that will communicate the most. Pithiness is key. The rest of me becomes as limp as that deflated balloon if the entire episode has gone beyond a minute or two. Usually I can’t even move my arms to try to take a rescue remedy until the seizing has somehow paused! Kind of backwards dontcha think? Weakness and headache and ringing in my ears and all kinds of nasty effects usually last a long time such that I may need to be fed or carried to the bathroom or bed, or just lie motionless until motor control returns. Then there’s the neck pain. Feels like whiplash. Then there’s the horror of realizing what someone else has just witnessed me this episode. I just want to disappear from the world afterwards, become invisible.
My last post was after an episode so horrible that I could not write about it in complete sentences. My husband graciously had taken off from work to drive me to a Doctor’s appointment. I was already in a lot of pain whilst sitting in the waiting room. The seizing started early in the visit and escalated so violently that I had slid down in my chair, curled to my left side trying to brace my head-and-neck as gutteral screams of holy terror emerged from deep within me. I struggled to breathe. Dr. J attempted to evaluate my back and right-sided pain so he could do a chiropractic adjustment. Seriously? He had Steve lift me up from under my arms as my legs gave way beneath me. Attempting to stand exacerbated the seizing. I had to let go which left me hanging from his arms. All I could do was cry in between gasps for air. Dr. J pushed on several upper lumbar segments of my back then had Steve put me back into the hard office chair. The convulsions didn’t stop. Dr. J had Steve pick me up again to attempt more “hanging adjustments” then plop me onto the exam table. Dr. J had discovered in prior visits that cervical impingements had the power to worsen my condition; cervical adjustments could bring me out of an episode when I was in a lot of pain as well. So within a minute of some adapted type of manual manipulation to my neck, my body screeched to a halt. The episode was now over.
I lain on that exam table staring at the ceiling, in shock. All of this was not a new phenomenon but each one is exceedingly disturbing. Dr. J has seen and brought me out of dozens of horrific episodes before. But i don’t think that Dr. J has seen a complete neurological collapse of my lower extremities nor repeated screams as if my brain was ON FIRE!!! Coupled with the gasps to breathe, searing pain, and violent amplitude of convulsing, this was probably the worst episode I’d ever had in Dr. J’s office. I whimpered as I eventually returned to my padded but hard office chair, shell-shocked by what was still going on in my life. We are nearly 9 years since the first convulsive episode on November 20, 2011. Why hasn’t anyone fixed this yet for crying out loud?! Dr, J’s timer had long gone off during the office visit and he appeared to be wrapping up his clinical summary on the computer. Somehow I found the strength to blurt out, “can we do some kind of labs or testing?” Evidently I’d hit the BINGO button with Dr. J. He ordered labs, an MRI, ultrasound, and office tests on the spot. It was time to re-evaluate a bunch of things. Results have now started coming in as I finish up the last of the scans, pending insurance approval of course.
It took me a day to partially recover from that incident last week. The next day I pushed myself to go grocery shopping early in the morning BEFORE going to bed (as my sleep/wake cycles continue to be reversed) and it took another day to recover from that outing. All of this came on the heels of a full moon, failed 2-week trial of an anti-fungal that escalated the convulsive episodes to FIVE HOURS PER DAY until I stopped it, the Doc visit and stress of follow-up medical testing, and short trial of an anti-parasitic medication before the full moon. More testing and IV fluids continue this week. I am exhausted. But hey, a new herbal anti-fungal came in the mail two days ago so whadddya say I try that? Geez. Why do I even try anymore? I just do.
18So I say, “My splendor is gone and all that I had hoped from the Lord.”
19 I remember my affliction and my wandering, the bitterness and the gall. 20 I well remember them, and my soul is downcast within me. 21 Yet this I call to mind and therefore I have hope:
22 Because of the Lord’s great love we are not consumed, for his compassions never fail. 23 They are new every morning; great is your faithfulness. 24 I say to myself, “The Lord is my portion; therefore I will wait for him.”
This scripture from the October 10th meditation in A Spectacle of Glory by Joni Eareckson Tada equips me to bounce back from the darkness of my suffering. Unlike a balloon that is left lifeless, useless, and seemingly hopeless, the Lord renews me enough each day so that I may carry on the tasks, the journey that He has ordained. Like getting all of those lab tests done, on top of other labs and medical appointments already scheduled for me. On top of some basic self care and chores that must be done. But hey, I would have never met Gary in the waiting room at our local hospital if the tests hadn’t been written that fateful day in Dr. J’s office nor had I gotten to the first lab too late to do the lab draws there. Nope. The man in visible pain rolled his walker to the chair right next to me for a Divine appointment of prayer and ministry that bounced me out of my own stuff without hesitation. He said he doesn’t have anyone praying for him. He has several tests and a kidney procedure coming up soon. I hope you will pray for Gary too, Gentle Reader. And me too. Gotcha covered already. Thanks a bunch, JJ
The Tilt Table Test (TTT) is designed to assess the integrity of a person’s autonomic nervous system. The heart plays a significant role in its function as does the vagus nerve. With so many organ systems tied into the sympathetic (fight of flight) and parasympathetic (calming) fibers of the vagus nerve, one can see how it can affect numerous aspects of a person’s health . . . and ability to function. This is complicated. A TTT may introduce more questions than answers yet sometimes provide the reason a person has not responded to other treatments for seizures. Today, I’m just glad that I survived!
The nurse or examiner administering the test begins by starting an IV in your arm. The patient needs to have been fasting for about 6 hours and cannot have anything to eat or drink until the test is completed as many folks will become nauseous. While there are variations of the TT Test involving medications that increase your heart rate, no medications were used for my test. The purpose of the IV is for the administration of fluids should your blood pressure drop. This usually happens if you faint during the test. If you do faint then your test is considered “positive” and the cardiologist makes his or her diagnosis from there.
The test procedure itself begins with the patient lying on his or her back for 15 minutes on a mechanical bed that tilts up and down from head to toe. Heavy straps are placed over your shins, thighs, and lower chest to prevent you from falling off of the exam table should you faint! (The examiner is supposed to lower the table in the event of a fainting spell, thus ending the test.) After the initial resting period and baseline testing of your vitals (EKG, pulse oximetery, blood pressure, and pulse), the table is inclined to 70 or 80 degrees instead of the 90 degrees our bodies are accustomed to when sitting or standing upright. You stay in this slightly reclined position for 45 minutes or until you faint. Then the table is lowered and you recover over the next 30-60 minutes. My test was scheduled for 1 1/2 to 2 hours. My husband and I left the hospital OVER FOUR HOURS LATER!!!
The nurse tried to start an IV in my right hand but was unsuccessful. The needlestick triggered a 30-minute convulsive episode. My husband applied an ice pack to my hand and eventually I stopped spontaneously seizing, uttering primal screams, and crying. My body was already starting to lose control, my brain felt like it was on fire, and I was unable to straighten my legs for the proper test positioning until the episode had stopped completely. The Charge Nurse came in, talked a lot, then was able to start an IV in my left hand. It hurt badly and this triggered another, less violent convulsive episode. By this time our personal ice pack was melted so the Charge Nurse applied a bag of ice bag over my left hand. Eventually I stopped seizing and crying. The nurse examiner tried to start the test while I was still shaking. I politely declined. He waited. Finally it was time to begin.
Jason RN, elevated the table to 80 degrees. Within about 5 minutes I started to feel lightheaded. My head was swirling inside in a clockwise direction that seemed to be from about the 2:00 position on a clock face to the midnight position. My body didn’t move. I can’t recall exactly which symptom happened next but I do remember that the straps across my shins started to hurt badly. I was placing more of my body weight against them as my legs began to get weak. This feeling of weakness was like water being drained out of a bathtub: little by little in a steady stream my strength was going away, beginning with my lower extremities and working its way upwards.
A few tic zips re-emerged probably 15 minutes into the test. The hospital pillow provided no head and neck support whatsoever. By the grace of God I had anticipated this and brought a neck pillow with me which remained after their hard pillow had fallen off of the table. It remained in place as the tic attack ramped up to an intensity similar to that of the needlesticks although more intermittently than continuous at this point. I started to become afraid of where this thing was headed. I worked as hard as I could to stay calm and not to panic. My body was going into a crisis as the number of symptoms increased along with their severity: headache, burning in the tips of my toes, burning in the tips of my fingers, stomach ache, left-sided neck pain, increased ringing in my ears, feeling chilled and having difficulty breathing. Jason kept asking me how I was feeling but it was getting more and more difficult to speak. Then things got worse.
Eventually my legs became lifeless. It took a heroic effort to straighten or reposition them to alleviate the searing pain against my shins: could I turn my feet out so the pressure was more on the inside of my lower legs? I tried that. Then that hurt too. I had to wait before I could try again. I tried switching back and forth but my ability to do so was failing. Finally I conceded that my legs were going to be bruised no matter what I did so I had to pick a position and stick with it. I found that if I locked my knees together and turned my toes inward, some of the strap pulled against my calves and less on the bony surface of the tibia. With that problem solved I tried to focus on my breathing. It seemed too shallow. Hmmm. What is going on? My body was slowly starting to slump forward like someone was pulling my head forward a quarter inch at a time on a cord. I could not stop it. Was I going to pass out?
Every 2 minutes or so, Jason asked me a question to see if I was still awake. Or maybe alive? My body continued to bend forward like a large sack of flour as my world felt like it was going dim, dimmer still. Around this time I asked how much time was left, we were past the halfway point, yet time had started to stand still. My hunkering down for the duration of the test changed to wondering if I would pass out like I had in bed so many times after bad episodes. When those happen I don’t remember falling asleep. The lights just go out and I wake up hours later with no memory of dreaming, just pain everywhere from head to toe. So if I wasn’t going to pass out this time maybe I could fall asleep?
I tried to let myself go. I was terrified. I was crying. The tears burned on my face. Hair brushing against the side of my cheeks felt itchy-burny. It was all I could do to raise my right arm to wipe my face with my sleeve or move the hair scratching my face to stop the annoyance, the irritating sensations of anything touching my face. And then it was nearly impossible to breathe with the strap cutting underneath my ribs, restricting my diaphragm. I kept saying that I couldn’t breathe. “It’s hard to breathe.” The test continued. “How much time left?” I mumbled. I don’t remember the answer. My husband Steve later confirmed the feeling I had that the left side of my faced was drooping. My tongue felt thick and I couldn’t move it to speak very well. It’s as if the lights were going out on my life. I was not going to faint as can happen with this test. I was going to die.
That’s when my thoughts turned to my Lord and Savior, Jesus Christ, dying on a cross for my salvation. In that moment I got a tiny view into His suffering at Calvary. Crucifixion was designed for maximum suffering until the convicted person died of asphyxiation. The convict would push up on his feet against the wood footplate to catch a gasp of air; in doing so this sent lightening bolts of fiery pain through the body from the nails piercing the nerves and tendons of the feet and hands that bore the weight of his entire body. The body would sag down then perhaps the head would hang as the person longed for death to end the most gruesome misery imaginable. But hanging one’s head obstructed the airway. There was no relief to be found. And our Lord did this for me. The guards pierced His side to make sure Jesus was dead. Through it all, Jesus declined the gall herb offered to ease his pain. He endured it all with a clear mind in a body already beaten and shredded beyond recognition before He was crucified! And then He finished the work of the Cross when He rose again on Easter Sunday. He overcame death and provided a path for all believers to receive eternal life, to be free one day of all suffering and consequences of sin in this fallen world.
My recognizing my need for a Savior and accepting His sacrifice years ago thus hath provided a way for me to endure my suffering on that Monday at the hospital. Whether I was going to die, or pass out, or make it to the end of the test fully awake and aware of my surroundings, I was going to be walking with my Jesus through it all. He was there with me in that moment when I simply could not breathe anymore and when the table finally lowered me to safety. In a matter of seconds, the test was over. I endured the TTT and got what I was supposed to understand about my suffering that is coming up on 9 years. Also finally, a medical test actually captured with objective data the hell that I have endured. My heart rate did increase and blood pressure drop although not extremely so. I had marked symptoms. I believe that it was a positive test even though I did not faint. For some reason the Lord kept me awake hanging there as far over as the straps would allow without fainting or dying. In my mind I was just about gone for good. In the Lord’s will, I made it through the most difficult of hundreds of tests in my lifetime.
But it wasn’t over yet. As soon as I was level, my body exploded into the most violent of convulsing that would happen that afternoon matched with gutteral screams, hysterical crying, and gasps for air. I held on for dear life. The episode continued for the next 90 minutes or so while I pleaded with the nurse to call the cardiologist to order IV fluids then check my blood sugar: 76. Thirty minutes into the non-stop convulsing, the infusion started and began to calm me down; it took a snack bar plus another 30 minutes before they would stop completely. I was a beaten puppy, so very broken and battered by the time it was over. The 90-minute infusion restored me enough to speak coherently and walk to the bathroom then later into our truck under my own power, albeit weakly. Over the next 2 days I stabilized. I still feel “buzzed” 3 days after the TTT. I’m also irritated that I don’t have my test results yet as promised. Sigh. That’s healthcare these days. I found out that Jason, RN had only done 10 of these tests since he was transferred to the Heart Institute from ICU a month prior. He was very nice. Regardless, I doubt he should have left me hanging there gasping for air, completely slumped over and hanging from the straps of the tilt table for several minutes. The goal is not to traumatize and torture the patient! I am still horrified by what I endured. I’ve had numerous bouts of crying as my mind flashed back to the ordeal, slowly emerging from a state of shock.
So if you found this blog after Googling “Tilt Table Test” well what can I say? This is probably one of the worst stories out there so don’t worry about it. Yours will very likely be fine. I didn’t vomit and that is good. The TTT results will very likely answer some important questions about my condition, maybe even point the Doctors to a treatment plan that will stop the daily convulsive episodes once and for all. The role of the autonomic nervous system in non-epileptic seizures has never been more clear for me as I start to benefit from targeted vagus nerve stimulation techniques and tools. Even the TMJ/trigeminal nerve interventions are related. Virtually everything I have done to date to try and get well has yielded valuable information if not improvements and personal growth. I have never felt closer to the loves in my life which is valuable indeed. My Stevers continues to be my hero through it all. In the end, the Lord will not waste any of our suffering, joys, or sorrows in His wondrous plans for our lives. Hang on, Gentle Reader. Hang on to that Cross! JJ