Prism Lights

I snapped a shot of my most favorite place while sitting behind the wheel of my car during a recent rainstorm. With a few editing tweaks, I was able to create this amateur sampling of how my vision gets distorted during a migraine aura. I always describe one as big, flat raindrops pounding down on a car windshield, often intertwined with ricocheting prisms of light reflection. The blinding aura generally lasts 45 minutes, then gives way for an excruciating headache. The kaleidoscope of colors is a beautiful thing...

I Am My Own SUPERHERO!

Four years ago today, I patiently waited for chief neurosurgeon, Dr. Park, to enter the Stanford University Hospital exam room so he could review procedures and instructions prior to my reconstructive neck surgery. The plan, I am pretty sure, was to build me a bionic neck. 😉 His assistant first took me through a series of odd neurological testing (which I failed), then waited in confused expression with me. When Dr. Park finally joined in to hear the fresh test findings, he paused. He asked me one simple question, which I answered. He again (at length) browsed results of my previous surgeon reports, PT progress, blood results, scans, and X-rays. Confidently, he canceled surgery. Although my neck is severely damaged, he said that stenosis is not my underlying problem. He referred me to the neurology staff, ordered more X-rays and another MRI, this one to include my brain and spinal cord with/without contrast. Days later, I received confirmation that I have Multiple Sclerosis. What? Oh! The disease where my own cells attack my own Central Nervous System. Sooo...I can (essentially) kick my own butt! How is that for SUPER POWERS...?!? #msawarenessmonth #mssuperhero #mstryme #antiquatedneurologicalscribble

Migraine, My Graine

Migraine, migraine, who has the migraine? I do! Even as I write, the aura of a colorful kaleidoscope lightshow hinders my vision. I must shift my gaze beyond the screen just to see it with partial clarity.

Migraines used to debilitate me. My initial attack was exactly 40 years ago, in fifth grade. The nausea with vomiting, the flashing lights, and the immense head pain would keep me at bay (usually in a dark room) and render me lifeless. Sometimes I would get reprieve a couple days or weeks before the next strike, while other times I would only get a few hours. Brainwave testing, hormone tracking, and diet control provided no assistance in discovering their cause. Varieties of strong medications did nothing to deter symptoms. No migraines displayed any rhyme or reason for their existence, but I eventually discovered mine do follow strict patterns. Over the years, that understanding has helped me embrace migraine headaches as a permanent feature embedded in my physical being, and allowed me to continue functioning.

So far, there are four patterns I have discovered:

·         Unusual, Yet Specific Warning Sign

o   Roughly two days prior to a migraine, the fullness and hunger signals in my stomach will glitch. They temporarily paralyze. A ravenous hunger possesses my body (like the voracious appetite of a nearly hatched silkworm, aka Graine) with strong cravings, severe pangs, and uncontrollable growling in my gut. The priority: find food and eat it! By the time I finish downing a whole pizza, a big salad, and dessert, the cycle is on repeat. It is best to not judge me during this phase; I am hunting prey. Once I finally do start feeling satisfied during a meal, I am approachable and know to prepare for an aura.

·         Auras Develop, Then Travel

o   An aura begins as a tiny blind spot off-centered in view. Over a period of 45 minutes, it continues to develop from a small circle to a large greater than (>) or less than (<) shape, eventually disappearing. For example, if the spot begins to the right of view, the circle of glistening lights gradually expands, develops an opening on the left (creating a > sign), then travels across the right plane of vision until it rounds to the right temple and disappears. By contrast, if the spot begins to the left of view, the circle of glistening lights gradually expands, develops an opening on the right (creating a < sign), then travels across the left plane of vision until it rounds to the left temple and disappears. The background during this incredible phenomenon looks like big drops of rain splashing down on a windshield, which inevitably causes the onset of nausea.

·         Auras Always Shift Sides

o   If an aura travels across the right plane of vision, migraine pain will always land and stick above the brow on my left side; if an aura travels across the left plane of vision, migraine pain will always land and stick above the brow on my right side. And auras always shift sides, like a pendulum swinging back and forth. If the last migraine aura started on the right side, the next one will start on the left side, then the one following it will shift back to the right, and so forth. Always.

·         Auras Are Not Necessarily Singular

o   Auras do not necessarily occur one at a time. In general, once an aura begins, it travels the entire path until the migraine pain sticks, then there is a break before the next strike, giving me ample time to breathe. However, on numerous occasions, a second aura began before the first aura pattern completed. The most I ever encountered at one time was three auras…left, right, left or right, left, right…leaving me hunkered over in a terrible state of confusion.

I am confident there are more patterns to be discovered as migraine headaches are quite a spectacular mystery. They have been my constant companion, my undying friend. I cannot imagine life without them. Literally, I do not recall what life without them offered me. Doctors assumed I would “grow out” of them. But no matter how extravagant they may appear, I chose early on not to let migraine headaches define me, nor excuse me.  

MS Awareness Glitch

Kickin' off Multiple Sclerosis Awareness Month in Disney style, and (of course) with an editing glitch which accurately depicts my journey with MS: frequently disconnected, perhaps separated, and occasionally beside myself. Believe me, I am fully aware of my dysfunctional disease...

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!

To Ponder

Why does the transfer of energy, especially warmth radiated through another person's touch, cause me electric shocks when I am on the verge of twitching?

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.