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.