WANDER LAND CARDS; emergency supplies for the blizzard
Coping with obstruction of cerebrospinal fluid rotation caused by spinal adhesive arachnoiditis in the thoracic and lumbar spine
There are days when the mind wanders through the OTHER kind of snow…. A simple Wander Land Card can point you in the right direction so you can shovel that junk out of the way.
I agree when Lisa Sonora Beam says, “When you’re in the midst of overwhelm, depression or despair, you can’t logically think yourself out. It’s even harder to take action.”
When significant scarring in the subarachnoid space causes an obstruction to the natural Cerebrospinal Fluid (CSF) rotation, these emotional factors may not be the only thing affecting the ability to act and remain in cognitive control.
The CSF is crucial to the health, well-being, and FUNCTION of the human brain. Fluctuations in CSF levels can impair cognitive ability. Depending on numerous personal medical, mental, and physical variables; this phenomenon can present in different ways for each individual. For arachnoiditis survivors symptoms of CSF obstruction can mimic those seen in cases of CSF Leak, hydrocephalus, and Chiari Malformation even when those specific conditions are NOT present.
After seven years of living with spinal adhesive arachnoiditis, my family has come to recognize when my CSF levels are low. I begin to resemble a ball in a pin ball machine bouncing from one room to the next without ever doing or achieving anything. When I am in a store I go from aisle to aisle without actually picking anything up off the shelf. My conscious sense of purpose becomes scattered. Though I don’t necessarily feel any unusual(for me) specific physical discomfort at this time, it is an indicator that a full pain flare and spinal headache is on the horizon. Even my dog knows when to tell me to go lay down.
What do I do about this?
PREVENTION is KEY. Three hours of vertical time is my limit before these cognitive issues start to snow all over my mission. Anyone who has followed my story knows that I adjust my work stations and schedule to include horizontal time every three hours. I also use an inversion table at least once a day to help restore fluid to its proper location.
PLANNING for cluelessness helps…
As my work scope increases for the Art For Arachnoiditis Project and my Studio goals, the brain snow has become increasingly irritating. Last month I created a schedule for myself. This is a very specific schedule that blocks out my time by project and by the hour, to focus on critical tasks of a given day. On clear days I allow fluctuation in this schedule. It is not intended as a restriction or limitation. This schedule serves as a valuable resource on those days that everything looks like a polar bear in a snowstorm. I just know that there was something I wanted to accomplish but CANNOT remember what it was. I keep three copies of the list. One is near my bed so that when I wake up in pain I can remember what I wanted to do today. One is near my PC in my office, and one is near my cot so that I can review when I lay down.
KNOWING what you intended to do, does not mean that you cannot forgive yourself for not being able to do it that day. Personally, I like to remember what it is I am forgiving myself FOR.
Shortly after I privately created this schedule for myself, I received this post from Lisa Sonora Beam. Although the end goal is the same, the way she tells it is much more profound than mine… She refers to what I call my “blizzard list” as her Dark Side of the Moon list.
She says, “make lists for what to do during creative overwhelm and despair”. Even if your mission is NOT an art-related one, I think her description of the purpose of the list and how it works is so much better than anything I could do to explain how meaningful and useful this method is to me. I firmly believe that these concepts and methods are transferrable to any mission.
Did you make a Wander Land Card for yourself? What other ways do you cope with these arachnoiditis Blizzards on the Dark Side of the Moon? Tell us about your experience and methods, and/ or share your images in the comments below.
I am an experienced patient, NOT a medical practitioner. Any medical discussion or references here are based entirely on my own personal experience and are not intended as medical advice or guidance. ALWAYS Seek consultation with a trusted medical professional prior to making any assumptions about diagnosis or changes to treatment.
MEDICAL RESOURCES
Cerebrospinal Fluid (CSF) Leaks
Cerebrospinal fluid – function, production and circulation – animation by Cal Shipley, M.D.
Cerebrospinal Fluid Research {BIO MED Central}
Neuropathology CHAPTER 14 CEREBROSPINAL FLUID
Chiari Malformation; Anatomy of Chiari and CSF
Neuropsychological Findings In Congenital and Acquired Childhood Hydrocephalus
Vitamin D in relation to cognitive impairment, cerebrospinal fluid biomarkers, and brain volumes
Art For Arachnoiditis 
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