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
A place where you reach your goal, Nirvana, the prize, all you’ve been awaitin.’
Too bad life is often not like that: the good, the bad, the ugly all take their turn
You never really know what you are going to get when your head lifts from the pillow at dawn.
And so goes my new treatment when things have gotten worse before getting better,
How is this even possible when it appeared the Lord orchestrated these steps to the letter.
Now faith means holding on to that which is unseen for the promise of my Lord’s Day
When the suffering will end, be redeemed for glory whether it comes soon or some other way.
I borrowed my beloved’s belief tonight when mine was just too shaken to go on any more–
With love in his eyes, his heart he prayed for healing and more once again like so many times before.
We know our Lord hears us and that we have His will, His heart within our own
I just pray I can hang on this weary road that seems to have gone on just too long.
[Please send chocolate . . . pure unsweetened cocoa butter works best right now. JJ]
My hope this night is the promise of my Lord and Savior that, “He will wipe every tear from (our) eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.” Revelation 21:4 Somehow, someway, I am going to make it, Gentle Reader!