With a brain fog or spaciness that defies definition, I humbly submit this blog update!
Tuesday began 2 doses of a promising new treatment for Chronic Inflammatory Response Syndrome: vasoactive intestinal peptide or VIP. The first dose was at noon and the second was at midnight. I felt a little on edge as I went to bed within the hour of the second dose, followed by a few tic zips (such as the norm for me these days!). What I didn’t expect next was the fearful images that passed before my eyes as I entered sleep mode. No problem, really. That’s what prayer is for and I called upon the Lord to sanctify my mind. Prayer answered. I was able to fall asleep without any more problems.
My next surprise came with an abrupt wake up at 4 in the morning with a vivid nightmare! When I say vivid, I mean that the bats in my mind were landing on me, in color and I could feel them!) Frightful indeed! Low grade tics quickly escalated into seizure attacks, air hunger, shortness of breath, and at least 20 minutes of rotating noxious symptoms. Not sure which was worse: the nightmare or the aftermath!
I have had nightmares and this type of experience before. The last one was at least 2 weeks ago so the timing may or may not have been related to the new medication. After all, the pharmacist said it was a “benign” drug and my LLMD said that 50 mcg is a low, loading dose. Yeah right. I am overly sensitive to everything right now so it is no surprise that a nasal spray of a new hormone, deposited directly into the capillaries in my sinuses and leading into my blood stream, could shake me up a bit. Sigh. No problem again. This is familiar territory.
Wednesday I decided to take a break from the VIP when I awakened feeling pretty beaten up. For my daily treatment I just ran some Rife programs, slept some more and had a pretty good day overall for me. The post-attack headache subsided and I was able to take care of a personal appointment and run a few errands. I forced myself to get out and work in the garden later and it was soothing therapy. I praise the Lord for His gift of Spring renewal here in the Midwest. I love living here.
I took the next dose of VIP on Thursday at noon. My nose started running right away but this didn’t last very long, thankfully. Then brain fog settled in followed by a ramping up of my nearly constant companion of a low grade headache. Regardless, I got going on some insurance matters that have needed attention for over a month. Guess I’m at the next tier of taking care of things since moving home March 27th; I was glad to “getter done.” The day was going fairly well so I got to go to church with my hubby for the National Day of Prayer Service at our calvary chapel. How sweet it is to worship with my Stevers, to pray, and to fellowship with other believers. It had also been about a month since the last time I was able to go to church.
The worship was awesome. However, during the service the music was sooooo loud, and the bass was soooooo loud that both of us had to plug our ears even though we were sitting in the back of the sanctuary under the balcony! Turns out that plugging my ears is not enough to avoid sensory overload. I cannot tolerate the vibrational sound energy and bass wavelengths of loud music. I do not understand why it has to be so loud anyways? We are there to worship the Lord Jesus Christ, not hurt our ears! Unfortunately, things did not go well after I returned to wait for Steve in the car. I had to get out of there before the spill-over into seizure attacks would begin. The music was the trigger that turned this multi-sensory-sick child of the King into what would turn out to be a 12 1/2 hour episode of seizure attacks. As rocker Alice Cooper once sang, “welcome to my nightmare” once again.
Gratefully I was able to get out of the car by myself when we got home and walk gingerly into the house. Gratefully Steve was available to help lift me off the couch two hours later after eating and resting, so I could get ready for bed. Gratefully I was able to attend to my own self care and even make us some food earlier during one of the breaks in the action. Gratefully I have some new positioning strategies in bed to minimize the impact the uncontrollable shaking has on headaches and other painful areas. Gratefully Steve prayed for me both before we fell asleep and in the morning before he left for work. Gratefully I was able to make a snack when I woke up ravenously hungry at 4 in the morning! Hmmmm. There’s that “4” number again.
The attacks tapered down by the time I was to finally get out of bed at 9:30 a.m. Just a quick jolt welcomed me to my day and I was able to take care of myself and our dog. Once again I was pretty beat up by the events of the last evening. Twelve and one-half hours had passed since the episode began and it was finally over. The shell of the person that is Julie was leftover to slowly get going, make my special dietary items, and take care of the stuff of life before my afternoon physical therapy appointment. Gratefully I was able to start then later finish and mail the jewelry order that was due today. But in the middle of the day and during physical therapy, there was another rebound episode of neuromuscular events followed by copious tears. I am so sad. This is really hard. I am really broken. Gratefully my therapist is trained in some calming techniques of myofascial release that work really well with me. Even at my low energy level with soreness all over my body, I am now able to function again.
So this is chronic illness and the ups and downs of recovery. One day you are excited for a promising new treatment and the next you are herxing from a reaction to the promising new treatment. The physical therapist says that the seizure attacks seem “softer” than the ones I have had in the past. O.k., I guess that’s good. Maybe it is just part of the process of assimilating a new drug that crosses the blood-brain barrier and into a zone where illness has a foothold at the moment. Sure is a tough road, I’ll tell ya. Recovery is not for wimps.
At this point is usually where I write about my faith in the Lord Jesus Christ, sustaining me and giving me hope in the face of severe testing and trials. If you’ve read this blog before, you probably know what I am about to write here. You might expect me to say what a difference it makes to have Jesus in my heart or I would be filled with despair. I usually say a lot about His sustaining grace as I truly believe that my life and these experiences are for my ultimate good and His glory. Yes, I am softer in many ways than before this illness began. This suffering will end someday. I know where I will be when it ends. Do you? Do you know where the trials of your journey through life will lead you when your life ends? If you do, does your life show it? Oh I hope so!
If you have not turned to the Lord as your Saviour, lover of your soul, forgiver of your sins (and you all have them, sorry folks, no one is perfect), and hope for all of eternity, then what the heck are you waiting for? How many blogs do I have to write about suffering before someone out there that isn’t saved gets it: the meaning of life is not all about YOU, it is not all about ME. It is all about HIM. It ain’t about a religion either. It is about a relationship with the God of the Bible. Until we are given an eternal perspective that He provides and transcending joy that He grants beyond measure when we but believe in Him, all we have is our fallen human condition. Now that is sad indeed! Our problems will never all be solved in this life. We will hurt. We will lose things and people and places that we love. Our experiences will be a mixed bag at best. We will fall short of the peace we seek when we realize that in the end, the stuff of this life adds up to dust, to nothing at all. We can’t take anything with us when we die. As the wisest, richest king that ever lived (King Solomon) once said, it is all meaningless!
Yes, it is best to hang in there when there is unknown territory. I am taking Jesus Christ with me. My eternity began when I accepted Him into my heart as Lord. Oh gentle reader, will you too?
P.S. Going for a walk with my pup, a friend and her pup. God is so good.