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.

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...

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.

Difficult Day

The most difficult part of my day (on a physical level) ranges from mid-morning to early evening, but can often include the wee hours, rounding back into the following late night...and everything in between.

Charming Bracelets

In honor of Multiple Sclerosis Awareness, I created a few charm bracelets to display along my left wrist throughout the month of March. One is a bangle, another an orange glass beaded, and lastly a chain with stamped lettering (a new metal working addiction I recently discovered).

When I finished the orange beaded bracelet, something kept swirling around and pinging my brain until I finally realized I made a charm placement mistake. The nagging simply would not end until I sat down and remade it correctly. Now I am able to rest easy.

Making charming bracelets sheds light on two prime points of my life according to MS:

1. Concentration levels are exhausted while utilizing fine motor skills to maneuver small items--such as beads, tools, and charms--because signals sent from my brain to fingers are often disconnected due to permanent nerve damage. Yet, this type of regular Motor Skill Therapy (or, what I term MS Therapy) becomes imperative for me to maintain proper function.
2. Cognitive dysfunction can interfere with even the simplest task, and may take minutes or even days to resolve.

So, I essentially become master of my inadequate "silly hands" with each bracelet I create.

I also discovered that mixing them together is not only adorable, but draws more attention and doubles awareness to Stay MS Strong!

My Constant Companion

"That was scary!" I instantly jumped with a spark that shot up my spine and pierced through my heart. My eyes blinked. Nearly immovable, it took a brief moment for me to realize I was still breathing, still alive. Sleep unsettled, hestitantly I slouched back into the comfort of my pillow and cautiously wound my way to Dreamland.

In the light of day, cognition fogged as I clumsily trampled among familiar mundane motions, yet most remain unremembered.

At last evening, sitting alongside the dinner table, ready to spoon a bite of food, vision compromised as my left eye smeared over with complete blindness.

*Sigh*

Multiple Sclerosis. My constant companion; my common foe.

Mimicking MS

It is possible that the biggest neurological nightmare is being referred to a neurologist who specializes in cardiology, practices in one state while living in another, and masters the art of confusion with no conclusion. In other words: This New Guy.

My first appointment left me yearning for a do-over. He heard not a word I spoke, so I simply wanted to go back and eloquently, through a mega-phone, blurt out the highlight symptoms for him to take notice.

The second appointment wrapped me in a state of total confusion. When I exited the Stanford Neurology Clinic 18 months ago, everything made sense. All signs, symptoms, and MRI images were consistent with Multiple Sclerosis. I was shocked at the diagnosis, yet found peace. I rejoiced, having finally learned the source of my many ailments from a group of doctors who obviously took care with me.

But, This New Guy approach was sassy, rude, and indecisive, telling me lesions (spots) revealed last April were probably just from diabetes. I assured him I am not diabetic. He said, "Yes you are; it says in your chart that your insurance mailed you diabetic information." No, my insurance did no such thing (are you looking at the right chart?). The only information ever mailed to me was a denial for the repeat MRI because it was coded improperly (by This New Guy). "Well then, they are because of your high blood pressure." I do not have high blood pressure. He snapped, "You did today!" That is correct. It was slightly elevated to 130/80-ish because my pain level sloped up to 7 on the scale (and then you shouted at me). But pressure today would not account for spots that have been panging my brain for 18 months. "I guess it's fibromyalgia." I guess not (it does NOT create lesions on the brain). 

Even my blood draws proved clean, with the exception of low Vitamin D (also consistent with MS). His marked confusion was confusing his own confusion.

This New Guy finally coded properly and, during our third appointment, the updated MRI revealed more spots. One, in particular, he admitted was again specific to MS.

During my fourth appointment, he said, "It used to be when any new spots showed up, doctors confirmed it as MS." Yet, he does not buy into such line of thinking because my spinal fluid appears clean. So, I questioned, "Then, what's causing all the lesions with my symptoms (reminding him of cognitive fog, fatigue, frequent urination, tremors, breathing/swallowing difficulty, loss of fine motor skill, gait changes...the list continues)?" He checked a few reflex responses, observed my struggle to gracefully walk the hallway, then literally scratched his head and produced no answer. We already ruled out diabetes and high blood pressure. We established fibromyalgia does not progress, nor does it cause spots. He mentioned the possibility of carpel tunnel syndrome. Seriously...?!? Even though the majority of my spots are consistent with MS, his last resort was to say they are from severe chronic migraine headaches, which I have endured since reaching puberty. 

Yup. He's a quack. Never before have I heard such nonsense, but at least he threw me a bone to chew.

After humbling my pouting to take a more pro-active stance, I researched all sorts of stuff from This New Guy patient reviews to migraine headaches. I discovered that recent studies DO suggest migraine with aura (my kind) CAN cause white brain matter lesions. However, it is not evident they cause the multiple symptoms I experience. 

Excerpts from the article White Matter Lesions in Migraine by Timothy C. Hain, MD, Chicago IL., May 2016:

 "Hamedani...(2013) suggested that [lesions] are...not especially progressive in adults..."

"These can be and often are confused with white matter lesions due to multiple sclerosis..."

"We have seen several patients in whom we believe MS was misdiagnosed, based on observation of white matter lesions."

"While these lesions can appear alarming in persons with migraine...generally they are not associated with any neurological disturbance. According to many authors, the clinical significance of these lesions in migraine is unclear (Evans 2003; Dahlof 2005; Bashir et al, 2014). This was also the conclusion of Palm-Meinders et al (2012), who reported that there is no cognitive decline."

Since I have progressive lesions and cognitive decline, along with neurological disturbance, it appears chronic migraine is not the sole criminal in my case...or is it?

An article in the Neurology journal (2013) claims "the researchers found that people with migraines ran a higher risk of brain lesions, abnormalities in brain white matter, and altered brain volume. The latter two have been associated with...multiple sclerosis..."

The billion-dollar question then: are my lesions migraine mimicking MS, or are they MS mimicking migraine?

The idea that migraine lesions may be mimicking MS symptoms is curiously real to me. So many puzzling questions to disect and scatter-brained answers to piece together. Aren't white matter lesions still lesions, regardless of the mechanism causing them...? Shouldn't there be concern as to what the short- and long-term effects of such lesions are...? Is a Swiss cheese brain fully functional...?

Oddly, This New Guy may or may not be on to something. So, I won't fire him just yet (even though his reviews were less than stellar). At the close of our last appointment, he said, "Let's just see where this goes," then prescribed a medication (topamax) for me to try. My final resort is to settle on what makes sense and for now accept that I have both: MS with lesions causing debilitating symptoms AND chronic migraine with white matter lesions.

With an ice-cold can of Coca~Cola and a six week follow-up scheduled, I will allow time to eventually solve this mystery. Until then, I will continue to be an antiquated neurological scribble who loves to color.

Silence, To Honor

Yarn Work

Since committing to making an altar cloth, I temporarily set aside the lace project to hone my basic crochet skills. I have been doing plenty of yarn work the past few weeks that will all be donated to the refugee center in Boise: soft, warm afghans (for children) and extra thick pot holders (to accompany kitchen cooking sets). I also crafted a chunky cowl scarf for my oldest daughter.

The angle and speed with which I stitch does not seem to compromise fine motor ability, so maneuvering the hook has been therapeutic for my "silly" hands. Ultimately, my crochet time has been a super fun venture, boosting my skill ego while bringing me one step closer to a finished altar cloth.

Body Tremors

Last night will be pegged as one of the worst episodes in the history of my body tremors.

It was a slow, but steady pace of being on my feet all day long: the usual morning shower, a journey to the library, grocery shopping, play time with my kindergartener, light house cleaning, a special Family Home Evening where the missionaries came over and helped grill up some delicious grub and then we played a couple rounds of Kinect Sports bowling. The day drew to a close with some Level 1 Easy reading. As I helped my kinderboy find sight words on each page, my own sight fled. My left eye went blank. Scary! I automatically cleaned my glasses, hoping it was just a dirty lens. It was not. Fortunately, the black-out was brief, and sight restored.

After prayers and good-night squishies, I cozied on my own bed with a big sigh of relief. Immediately, the adventures of the day took their toll in the form of uncontrollable shivers, shakes, tremors, and twitches from head to toe, for near an eternity. I finally stumbled to the couch and cued some old Seinfeld episodes to occupy my mind. At one point during the tremors, I could only yawn to keep my breathing consistent. I feared I would pass out otherwise.

Eventually, I awoke. Not sure if I actually did pass out or if the body tremors wore me to complete exhaustion. Needless to say, I am feeling like an antiquated neurological scribble again today.

Spinal Tap

Here I am, just chilling in my bed, waiting for the spinal tap-induced headache to dissipate (think I'll watch "This is Spinal Tap" to continue with the day's theme...ha~ha!). The doctor instructed, "lay flat and give it a couple hours; no activity today." Wise advice. Any upright movement immediately increases pressure on my brain and invites an intense pain I have not experienced in three decades.

The last lumbar puncture I had was in conjunction with a myelogram, and both were performed with highly archaic flair. I swore I'd never do it again. But advances in technology made this go-around more comfortable. I was even able to crack a few jokes during the procedure. And through the course of conversation with medical staff, I now have "Wayne's World! Wayne's World!" tapping my brain.

I'm not sure which pain in the brain is more unbearable...

My MS Odyssey

I survived another wild launch into a 3T MRI machine, only to return in T minus two hours (and some loose minutes).

Tight spaces, such as that of a tubular MRI machine, are usually no bother to me. But when a bulky face mask is required as part of the apparatus for stabilization during testing in that confined space, my heartbeat skyrockets at a rapid pace. No amount of consolation to myself--taking deep, oxygenated breaths or calmly reminding myself that I AM a super hero--stops panic from over-riding relaxation within the initial five minutes. Hence, it has become prudent for the neurologist to prescribe a generous dose of Xanax to sustain me during the 2-hour imaging procedure.

This week was no different. The little blue pill temporarily became my best friend, my saving grace, as I prepared to enter the cold, loud imaging shuttle.

Fortunately, I had friendly technicians who successfully inserted my IV on first attempt, surrounded my ears with familiar sounds of classic 80's rock, secured my arms against the machine walls with cozy padding, and covered my body in a toasty warm blankie. The only thing missing was a pink binky.

Somewhere around the midway point I briefly dozed off, startled myself with a quick jolt, then apologized for the unnecessary snort. I was assured it did nothing to hinder the images, thankfully. Once ejected from the dark abyss, back into reality, my stomach demanded a Smashburger combo, which I nearly inhaled from starvation.

Later, the neurologist and I reviewed my updated MRI report. Although my spinal cord looks good, more "spots" exposed themselves on my brain: a couple of them appear consistent with severe migraine, while yet another is of major concern to Multiple Sclerosis.

Progression in time and space warrant the scheduling of another spinal tap, a procedure which, the first time, bruised my entire lumbar spine and twisted my dreams into nightmares. I am somewhat hesitant to do it again (especially since I have to refrain from taking any pain relievers), but understand the necessity for it.

As with all things, I will embrace the obstacles life encounters and enjoy the ride along my own personal MS odyssey...

My Life According to Def Leppard

Def Leppard is my all-time favorite band. Ever. But, somehow our paths never managed to cross, so I have waited over three decades to see a live performance. Still, I continued as a loyal fan, hopeful that one day we would meet. A while back, I posted a fun note on Facebook about My Life According to Def Leppard. I share here:

1. Are you male or female?
"21st Century Sha La La La Girl"

2. Describe yourself:
"Two Steps Behind"

3. How do you feel?
"Excitable"

4. Describe where you currently live:
"Hello America"

5. If you could go anywhere, where would you go?
"Back in Your Face"

6. Your favorite form of transportation:
"Rocket"

7. Your best friend:
"Miss You in a Heartbeat"

8. Your favorite color is:
"White Lightning"

9. What's the weather like?
"High 'N' Dry"

10.  Favorite time of day:
"Only After Dark"

11. If your life was a TV show, what would it be called?
"Hysteria"

12. What is life to you?
"Unbelievable"

13. Your current relationship:
"Love and Affection"

14. Looking for:
"Truth?"

15. Wouldn't mind:
"All I Want is Everything"

16. Your fear:
"Billy's Got a Gun"

17. What is the best advice you have to give?
"Stand Up (Kick Love into Motion)

18. If you could change your name, you would change it to:
"Lady Strange"

19. Thought for the day:
"Rock, Rock ('Til You Drop)

20. How I would like to die:
"Turn to Dust"

21. My motto:
"Action! Not Words"

The answers remain the same, but one question still begs: Do you wanna get ROCKED...?!?
"Yeah!"

And I FINALLY did!!!

Thank you, Def Leppard, for performing an AMAZING concert (opened first by Tesla, then REO Speedwagon)!  The repercussions of immobility, nerve twitching, and full-body muscle throbbing today were worth EVERY moment I shared dancing and singing with you at Taco Bell Arena in Boise on Wednesday night!

Consider my Bucket List checked.