It’s 10:00 AM, Friday, February 18
While in our bedroom, if I close my eyes and really focus, I can hear the peaceful sounds of the rain in the trees outside and on the balcony, just outside. The sounds of water have always been soothing to me, especially storms and thunder showers. While I was growing up, there was a time when my parents co-owned a boat that was kept on the Delta; we went there for mini-vacations and a few of the summers from my childhood.
My sister Mindy and I would sleep in the bow of the boat and every night I would go to sleep listening to the sounds of the water lapping or splashing against the hull. Many of my memories have faded over the years for a variety of reasons, but I’m truly, truly blessed to still be able to remember some of my time on that boat and distinctly remember how much that time meant to me. Forgive my minor digression of historical perspective, but it relates in the sounds of water and rain and the peace I feel listening to them. The sounds of rain, a storm, a river, a stream, the ocean, even the wind upon a lake; if I can just focus on these sounds, I can sometimes experience a degree of rest I seldom find tangible.
My last communiqué was yesterday while sitting at PT ; CC and I had gone in on time and I waited for my “turn”. My muscles have been a war zone for a number of weeks now and I was hopeful that a sort of truce could be negotiated through the massaging and stretching of angered muscles, over the course of my appointment. That was not to be.
As we were finishing working on my legs, my eyes closed and my face and tongue began to go numb. These attacks bring with them a more significant degree of fear and panic, because these ones often affect my breathing and swallowing. Mark called CC into the room and once I heard her voice, though I couldn’t see her, I believed I would be alright, eventually, one way or another, even though fear was taking hold.
By this time, I had already had 5 potassium tabs (Effer-K+ [each tablet is 25Meq/almost a gram of potassium])before going into the room, an effort to stave off any would-be attacks while in my appointment. This attack went between complete ragdoll/deadweight and muscle locking, and though my face and tongue were paralyzing, I was still able to swallow with much effort, so CC gave me more Effer-K tabs until the rigidity ceased and then they got me into a office chair and rolled me out to the van. Every now and then, my eyelids would force open and my eyes seemed to sweep from up/down to left and right, but it was very hard to get them to open, let alone remain open, and even then, my eyes seemed to roll on their own; the only comparison coming to mind is that of a driver of a horse-driven coach that had lost the reins of the horses while in full gallop, and was desperately trying to take back control, being bounced and shifted, to-and-fro with each stride of each horse. And, once he did finally regain the leads, he was too exhausted to continue in that moment and needed to stop the journey long enough to rest. I guess that’s kind of long-winded, but it’s actually pretty accurate to my perception; I know the attack didn’t last forever, but it felt like it at the time. Writing this out is helping me remember what happened; another memory.
Once again, upon arriving home, CC was able to basically carry me into the house and get me into my black chair where I stayed for the next few hours. After basically stabilizing me, she left and picked up the kids and upon arriving home, she and Missy carried me upstairs and got me into bed, where I stayed for the remainder of the afternoon, evening and night. I was able to walk short distances by late nighttime, but my legs were frustratingly weak and shortness of breath had returned.
I’ve been hopeful that the recent change in medicines would make a notable difference in my quality of life, and though I’m feeling less depressed as a result (which was one of the targets of the medicine change-up), the pain experiences have not diminished, so like a person with a type of insomnia, my body doesn’t get to completely rest or recycle/rejuvenate, so, in a sense, each day brings another percentile increment of exhaustion. At least, that’s the view from here. Even now, it’s hard to focus my thoughts and not just stare at the computer screens while my mind works to convey coherently. With all of the words in the English language available to me, I shrug my shoulders at the realization that the quote “I feel like I’ve been run-over by a truck” is the most accurate quote for me to choose at the moment. Not too eloquent, but accurate, I suppose.
I must remember and keep fresh to my mind, that I am not in the hospital and I am ambulatory, still, in the midst of this *#@%ing disease and I need to remember that there are MANY, many more who are suffering far more than I, right now as I write and you read. Your prayers are coveted and your encouraging words uplift me as often as you share them.
Please pray for no hits today.
Peace.
