2020

Reserving this post/year to potentially come back to in the future.

2019

Reserving this post/year to potentially come back to in the future.

What Year?

Funny, I thought 2016 was THE year of my diagnosis. Well, I was wrong.

This past spring I received a new and improved diagnosis called Chronic Inflammatory Response Syndrome, complete with a C4a lab marker demonstrating high levels of inflammation (more than 6xs that of a healthy individual) and a Neuroquant MRI, revealing my brain is inflamed and swelling at the micro level.

The good news is, with these newer clinical findings and the help of doctor in South Pasadena, I’ve been able to establish causality between the p vivax malaria I was infected with on my work trip and the health complications I’ve been up against. The bad news is, after trialing over 20 different treatments over the past several years, I’m still nowhere near landing on a treatment regimen that will allow me to return to work.

At the beginning of 2018, after 7 rounds of interviews, I had been offered a position in Pasadena. In faith, I had pursued the job opportunity, and transferred my residency and medical care to CA. Sadly, my body never allowed me to accept the job offer, and though the South Pasadena doctor was an answer to prayer for my workers’ comp claim, I still haven’t received a dime from Campus Crusade for Christ’s insurance carrier. The last of my retirement has been cashed in and I’m on track to financially implode this April.  

I understand there are skeptics, who will never get what it’s like to live in a body that only operates at 15%, but I know my body’s limits, and pushing past those limits always comes with consequence. It’s true, on occasion I splurge, but I can only do this from time to time and ideally at the right time in my menstrual cycle, when the post-exertion impact isn’t as severe. I hope to at least pursue part-time work once effective treatment therapies are in place and I'm able to acquire a laptop that doesn’t shut off at random, like mine does now.

I continue to face each day with already-zapped energy levels. My migraine-medicated days have doubled from 10 to 20 days a month since I started this journey. Tinnitus, asthma, bruxism (aka gnashing of teeth), along with hypnic headaches that wake me up at night are all a part of my biotoxin illness, as is POTS, which preliminary research indicates is autoimmune related.

Currently, the “work” I do is focused on navigating the health care system. I fight for medications & referrals, attend doctor’s appointments, and test medications like a guinea pig, with side effects including but not limited to blood in my stools, hair loss, and psychiatric nightmares, accompanied with real pain sensation of being stabbed. I also continue to plug away at my Workers' Compensation claim, hoping and praying that it will be honored soon. I trust that financial redemption is near.  

In April, a charismatic person assured me THIS was “the Year of the Lord’s Favor.” I believed him, but I think he may have been off a year. Perhaps, instead, 2019 will be THE year of turn around, from ashes to beauty, from despair to joy.  Or, maybe it won’t be, but what I’ve come to realize - since losing my life energy in Africa six years ago - it is far better to hold onto Hope and be wrong, than to have no hope at all.

2017 Almost Home

Home is where the peacocks roam.

Or so that's what I wrote on a lime-green sticky note earlier this year.

Let me explain...

(* Reflections on 2017 coming soon...)

2016

If I recall correctly (which I'm probably not), the Chinese have years of cats and dogs, and cows, and a few other farm animals, I think.

I don't have an associated farm animal that fits my 2016 profile.  But this past year will go down in my personal history book as the Year of my Diagnosis.

Through Crossfire

I'd been waiting for five months for this day. Finally, it was here. The ceiling sky attempted to assure me that I was fine, and everything was normal. A large print of treetops was displayed overhead, similar to the trees I looked up at while lying on a yellow and white checked blanket in Central Park with my last boyfriend.

But I was underground, on floor B2, double below street level, just like I was when I worked in the Empire State Building three years ago. Except rather than sitting at my cubicle laughing with colleagues, I was lying down on a table, seemingly too close in shape to that of a coffin.

But I had asked for this; I had placed the request on November 16, 2014, to be rolled into an MRI machine to see if the imaging might be able to find abnormalities in my brain contributing to the health issues I've been battling since my return from Africa. A Stanford study recently revealed that there are three distinct features differentiating the brains of those who battle chronic fatigue syndrome from those who are healthy. In hearing about the study, I felt compelled to find out if my brain fit the profile of typical CFS cases. That's why I pushed for this MRI to be done.

But suddenly I was scared. And I hated that there was no one to hold my hand through all of this. While in the waiting room, I envied the couple sitting across from me. I didn't know their story - who and why they needed an MRI at University of Michigan's hospital - but by their wedding bands I knew they were married, and by their interactions, I knew whatever health issue they were up against, they were in it together.

After boxing in my head, and covering my gowned body with a blanket, the technician placed a squeeze ball in my hand. He instructed me to squeeze it as an emergency out to the MRI machine. I had been asked on a questionnaire and by the technician if I had problems with enclosed spaces or claustrophobia. I proudly answered that I had been spelunking (caving) before, and should be fine.

But suddenly I was terrified, and I feared I might have some sort of panic attack any moment. One last glance at the tree canopy overhead, and I closed my eyes as the technician rolled me into the machine.

I had been given ear plugs and headphones, yet the noise of the machine was only muffled. The shotgun sounds of the MRI suggested that I had entered a war zone, yet I couldn't move an inch to escape the crossfire.

Visualize good memories, I instructed myself.

With the squeeze ball in my right hand, I borrowed my last boyfriend, even though he was no longer mine. We walked the mall of Central Park, holding hands, the way we had last Memorial Day weekend.


The Mall

"We're going to get you better," he insisted. And suddenly we were on that same yellow and white checked blanket that we had grassed stained in Central Park, gazing at the dome of stars over my lake in Michigan.

With a shooting star, we wished together that I would get my health back. Having him there by my side, holding my hand, made everything better, even though my health wasn't.

Stop. I reprimanded myself. You can't keep thinking about him. He exited your life months ago. He's not in this health journey with you anymore. You're on your own.

Visualize good memories, again I instructed myself.

And so I visualized my day at Malibu Creek State Park, rock climbing with a great crew, and traversing the rocks around the creek with a lawyer far too young for me. We were both Michigan-raised. As we entered a cave he shared, "Sometimes I ask myself, 'am I in L.A., or am I in paradise?'"

That day we were in paradise. And as our group hiked out of the park well after the sun had set, the crescent moon smiled down on us. But that day ended, and so did my visualization and I started weeping. Mid-MRI tears streamed down my face.

It felt too near death to be thinking the way that I was. My good memories suddenly haunted me, as if I was allowing my life to flash before my eyes - the way one might as they pass from the now into eternity.

With tears still streaming, my thoughts took me back to New York, this time to Bryant Park. Sitting at a table on the north side of the green, under the shade of the trees, I told my last boyfriend, "I'm not going to let you date me until I have stuff figured out with my health." In speaking, tears well up in my eyes and escaped their holding place.

He gently wiped the tears that had slipped down my face. "You're going to get better," he assured me, speaking with a confidence that I lacked after fighting for so long already.

The crossfire suddenly stopped.

Still inside the machine, I opened my eyes and was blinded by the light shining down on me.

The Journey IV

"I want to date Taylor Swift so she'll write a song about me," my friend Bryan wished aloud as we drove back to his place. Taylor wasn't playing on the radio, so I'm not exactly sure where his dream thought derived from, but we both laughed at the ridiculousness (i.e. unlikeliness) of his idea ever happening.

But his statement prompted me to deliberate: Should I admit that I had written a song about him? I mean, it wasn't exactly about him, but it involved him, and a day we spent together... titled... That One Day... with simple chords, mainly the E to A to B slide on my guitar. I wrote it 13 years ago, but I could probably still play it - maybe. Ah, no, I can't tell him. He'll insist I play it for him, and it was one of the first songs (out of a half dozen) I've written so it isn't very good. In fact, it is bad.

Instead I shared what I recalled him telling me on That One Day. "We were at Doheny Beach, putting wax on our boards, and you told that someday you wanted to invent surf wax scented perfume for women. Surfwax and campfire."

But rather than starting a perfume business, Bryan took up professional poker playing. After a stint in Vegas, he moved to Colorado where, in the warmer months, he guides white water rafting excursions down the Blue River. https://www.youtube.com/watch?v=lOMuc9OcZh8

Our conversation wandered as we drove along that river. "For my birthday," Bryan explained, "my girlfriend asked, 'What do you want to do? It's your birthday. You get to do whatever you want.' And I told her, 'I already do what I want every day.'"

It's true. Most days he really does do whatever he wants. He lives the adventure so most days fall in the exceptional category rather than in the mundane.

I suppose that's why I was nervous about my birthday this year. I tend to live a lot of adventure, and especially so when I'm in California, where the adventuresome life seems far more accessible than in rural Michigan. In the weeks leading up to my birthday I had several perfectly amazing days - days where I did whatever I wanted. I feared my actual birthday would be a disappointment in comparison to my beach day and volleyball at Venice Beach, exploring and rockclimbing at Malibu Creek State Park, and my hot springs getaway at the Miracle Manor.

When you're single it's up to you to figure out how to make your birthday special, and it's the only holiday you get (no anniversary, Valentine's Day, Mother's Day, etc.). I had wondered in leaving CA a week early if I might be fated to spend my birthday alone. My four closest female friends in Colorado were already booked with other plans on my birthday evening. But thankfully, Bryan, wasn't. After two rather dismal birthdays in a row, this year my birthday was epic, and I couldn't be more grateful.

But as my friend Bryan pointed out, we shouldn't wait for our birthdays to embrace the goodness that life has to offer. Our time on this planet ought to be filled with friends and adventures that awaken our spirits. Perhaps it ought to feel like our birthday, where we celebrate life with others over a meal or adventuresome fun, at least once a week rather than once in 12 months.