Thursday, March 1, 2018
MS Awareness Glitch
Tuesday, February 27, 2018
Simple Understanding
The past two weeks have been physically daunting. The dizzy spells, the jabbing pain, and the difficulty breathing wore me to exhaustion. I was convinced death opened a door, but then I reminded myself I have survived tough days before. It is a curious thing, however, why it happens. Some weeks are bearable and I am highly productive, with little side effect. Other times, I'm curled into a burning ball on the sofa, begging for mercy. No medical doctor has been able to explain this mystery to my understanding.
Until today.
The oncology surgeon who provides for my youngest daughter simply shared that when either a new lesion is being formed or an already formed lesion is in the finishing stage of death, the disconnect of signals lends way to dizziness, imbalance, burning/tingling, and even severe migraine headaches. Although the symptoms vary, depending on the lesion location, they are exacerbated at the beginning and ending of lesion formation.
Essentially, my better days are cerebral white matter idleness, when no activity occurs along the axon. Activity along the nerve pathways (breakdown of myelin sheath), however, complements my worse days.
Now, THAT I understand!
Until today.
The oncology surgeon who provides for my youngest daughter simply shared that when either a new lesion is being formed or an already formed lesion is in the finishing stage of death, the disconnect of signals lends way to dizziness, imbalance, burning/tingling, and even severe migraine headaches. Although the symptoms vary, depending on the lesion location, they are exacerbated at the beginning and ending of lesion formation.
Essentially, my better days are cerebral white matter idleness, when no activity occurs along the axon. Activity along the nerve pathways (breakdown of myelin sheath), however, complements my worse days.
Now, THAT I understand!
Wednesday, September 20, 2017
To Ponder
Wednesday, August 16, 2017
Six Days In, Three Days Out
It felt like 220 Volts of electricity rapidly surged through the length of my 5'2" stature: the worst episode in months!
After a lengthy hiatus from regular physical exercise, I returned to the West Y for a regimen of cardio activity, combined with alternating days of lower- and upper-body conditioning. Six days in, I reached my target heart rate for the ultimate lipid bake. My breathing stayed smooth and my muscles remained unwearied; I sighed an accomplished relief at workout's end.
Smile.
And then...
(What was suppose to be) a relaxing, hot shower--in preparation for a fine dinner at Pad Thai that same night--sent the bathroom twirling in a vertigo dance of delusion: the heat, the water stream, the slippery soap all swirled into a single entity across the walls as my hands stumbled to turn the shower knob to the "off" position (oh, what irony!). My struggled breathing, dizziness, and bobbling eyeballs left me in a state of complete exhaustion when my vision finally returned to a blurred focus.
Dinner was delicious, but cluster migraines settled as I remained partially immobile and disconnected from reality for the next three days. Some might argue that I became a permanent fixture on the loft sofa while watching mostly 80's chick-flicks and The Middle episodes (don't judge).
Three days out was simply the calm before a raging storm.
When I returned to the gym yesterday, I purposefully performed an easy, low-impact/low-intensity cardio drill on the treadmill: walk programmed rolling hills, ranging from 2.8-3.2 incline at a 3.0 speed.
Perfect.
(Not).
Lying in bed last night, my internal temperature seemingly dropped as if my nerves took a vacation to the Arctic Tundra. I was ice cold. My body shivered, my teeth chattered, I began to smell fried nerves, and my cognition quickly failed. When my limbs went completely numb, I slowly hobbled down the hallway and retired to the loft sofa once again. I wrapped myself in the security of the super soft MS quilt my aunt made me, then I checked the time on the clock. My body continued to shiver, quiver, and twitch uncontrollably for 40 minutes.
Solely based on my limited knowledge of hyperactivity, I would suspect that I encountered a faux myoclonic seizure.
After a lengthy hiatus from regular physical exercise, I returned to the West Y for a regimen of cardio activity, combined with alternating days of lower- and upper-body conditioning. Six days in, I reached my target heart rate for the ultimate lipid bake. My breathing stayed smooth and my muscles remained unwearied; I sighed an accomplished relief at workout's end.
Smile.
And then...
(What was suppose to be) a relaxing, hot shower--in preparation for a fine dinner at Pad Thai that same night--sent the bathroom twirling in a vertigo dance of delusion: the heat, the water stream, the slippery soap all swirled into a single entity across the walls as my hands stumbled to turn the shower knob to the "off" position (oh, what irony!). My struggled breathing, dizziness, and bobbling eyeballs left me in a state of complete exhaustion when my vision finally returned to a blurred focus.
Dinner was delicious, but cluster migraines settled as I remained partially immobile and disconnected from reality for the next three days. Some might argue that I became a permanent fixture on the loft sofa while watching mostly 80's chick-flicks and The Middle episodes (don't judge).
Three days out was simply the calm before a raging storm.
When I returned to the gym yesterday, I purposefully performed an easy, low-impact/low-intensity cardio drill on the treadmill: walk programmed rolling hills, ranging from 2.8-3.2 incline at a 3.0 speed.
Perfect.
(Not).
Lying in bed last night, my internal temperature seemingly dropped as if my nerves took a vacation to the Arctic Tundra. I was ice cold. My body shivered, my teeth chattered, I began to smell fried nerves, and my cognition quickly failed. When my limbs went completely numb, I slowly hobbled down the hallway and retired to the loft sofa once again. I wrapped myself in the security of the super soft MS quilt my aunt made me, then I checked the time on the clock. My body continued to shiver, quiver, and twitch uncontrollably for 40 minutes.
Solely based on my limited knowledge of hyperactivity, I would suspect that I encountered a faux myoclonic seizure.
Saturday, July 22, 2017
Fun Summer Days!
It was a fun week with my Li'l Guy! We splashed for hours in the Lakeview Water Park, ate delicious theater popcorn during Dollar Day double feature at Overland Park Cinema, walked the dirt paths to learn about various fish and wildlife at the MK Nature Center, drank ice cold Coca~Cola from a glass bottle to complement our peach tacos at Tin Roof, painted rocks, and giggled...a whole bunch!
But all our fun came with a hefty price of heat exhaustion, nightly body twitches, fatigue and nausea. Ahhh, yes. One must inevitably pay the MS piper.
So. Worth. It.
No Exit Point
My brain activity races at lightening speed, yet the signals are not exactly making it to their designated destinations. They zip, zap, and ricochet around the membrane walls, which makes for highly congested pathways, sending jammed ideas into rapid circular motion. The signals quickly become trapped, with no exit point.
I often picture my brain activity like Clark Griswold in the movie National Lampoon's European Vacation, repeatedly circling the roundabout, "Hey, kids. Look! There's Big Ben! Parliament!" And by sundown, his once calm, chipper demeanor reaches frantic, looney bin status...
I often picture my brain activity like Clark Griswold in the movie National Lampoon's European Vacation, repeatedly circling the roundabout, "Hey, kids. Look! There's Big Ben! Parliament!" And by sundown, his once calm, chipper demeanor reaches frantic, looney bin status...
Wednesday, May 31, 2017
World MS Day
"Life with MS" is capricious. On a daily basis, the legions of lesions which infest my brain offer any painful variation of cognitive function distortion, dampened mobility, and/or skewed fine motor capacity.
I often miss the ability I once possessed to perform as a competitive-level figure skater and skilled pianist. Now I give three cheers if I make it through a 24-hour period without 1) slamming into the wall as I round a corner or 2) dropping everything I try to grasp.
Embracing this new version of me is not a simple task because most days my existence is seemingly refined to being an antiquated neurological scribble.
I often miss the ability I once possessed to perform as a competitive-level figure skater and skilled pianist. Now I give three cheers if I make it through a 24-hour period without 1) slamming into the wall as I round a corner or 2) dropping everything I try to grasp.
Embracing this new version of me is not a simple task because most days my existence is seemingly refined to being an antiquated neurological scribble.
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