Thursday, July 3, 2014

Functional (But not Good) Days

2009:  That was the last time I had it all going for me. My dream job—a senior position in design and communications I had fought my way up the ladder to get. A loving, doting and extraordinarily successful boyfriend. And my band, Opal Axis, finally establishing a local presence through a series of Bay Area shows, radio interviews, and our EP release on iTunes.

I lost it all.

Can't work, no income. No boyfriend for five years now. No band, no performances. No advancing or progressing.

I've reached that point of not having good days anymore. At some point over the last three and a half years, they stopped happening. I remember feeling that, on these good days, my body and brain worked as they should. There used to be days, special as they were, when I could eat healthily, get a good night's sleep, and my body thanked me by serving me well.

Instead, I now alternate between functional—which is hardly comparable to what used to be "good" days—and complete, utter dysfunction. 

On my functional days, while I'm able to cook, clean, and run errands, I do so in a state of discomfort, pain, fatigue, and brain fog. On my dysfunctional days, it's difficult to use the toilet or watch the TV. I'm in bed, hopefully sleeping, but often languishing in sheer survival mode.

By God's grace, superhuman willpower, or random surge of good health, I was able to make the cross-country move in my RV last year. It's not something I could even think about doing in the state I'm in.

Living with undiagnosed Lyme disease for 25 years, I was mostly functional. I wasn't great, and my health never measured up to what it should have been for someone of my age, but I was able to function on a normal level most days.

In early 2011 I entered the dark tunnel of doom—antibiotics, antiparasitics, antimalarials, hormone modulators and immune modulators—and it's been hell trying to achieve homeostasis again.

Over the three and a half years since I started Lyme & co. treatment, I made some small but temporarily significant improvements that ultimately landed me in a worsened state. Each time it was one step forward, two steps back.

The more supplements I tried—no matter how benign—the more inflamed my body became. Because of my leaky blood brain barrier, every protocol every specialist put me on gave me more debilitating and longer lasting encephalitis.

When I refer to encephalitis, which I often call "having a reaction [to something]", I'm describing the absolutely debilitating feeling of brain swelling, a migraine, nausea and dry heaving, the inability to sit up or stand up, cognitive impairment, severe agitation, a fever and sweating.

Over time, these "immune reactions" have increased in frequency, last longer and are more difficult to put an end to. I'm exploring the possibility that I've developed what's called Lyme-induced Lupus, which occurs when the immune system becomes so burdened by a constant state of fighting infection (i.e. Lyme) that it ultimately falls into a constant autoimmune state, attacking the entirety of a person. Essentially, the treatments which are meant to help the immune system fight Lyme and its coinfections can actually exacerbate an already hyperactive immune system. The immune system loses its ability to differentiate between the bad (infections and allergens) and the good (your organs).

Next time I write, I will have returned from seeing a highly acclaimed immunologist and rheumatologist in Baltimore, Maryland. I anticipate he'll run a lot of tests I've never done and I may be closer to understanding what's going on now.

As much as I try not to allow feelings of envy or self-pity enter my headspace, I can't keep them out. There are times when I notice how fast the world seems to move around me, without me. I feel the years flying by and notice everyone else's successes.

I suppose a part of me used to enjoy the competitiveness of achievement. At a young age, I tended to excel in many ways, compared to peers. I graduated high school and college with honors, in both cases one year younger than my classmates. There wasn't much I couldn't do if I put my mind to it.

Now I'm 32, and everybody my age has multiple children, masters degrees and Ph.Ds, and I'm no longer achieving anything, which goes against my nature. Whatever disease I now have is definitely a challenge on so many levels.


  1. I started reading your blog with this entry. At some point I'll read the old entries as well. What a great writer you are! Indeed it's extraordinary that you finished your RV journey alone and in such a state. (s"states!" Go USA!lol) It was meant to be!