Lyme: It Runs in my Family

Life got busy after my last entry, in both good ways and bad. In the midst of a worrisome few weeks involving a family member being hospitalized, I turned thirty. The weekend of October 14th reminded me that (a) my friends indeed care about me more than I'd realized, and (b) I can have a lot of fun on the town while staying 100% sober—as long as I have the energy. And thankfully, I did, making for a very fun weekend of celebrations (albeit small and intimate ones).

Unrelated to the family member being hospitalized, details of which I'll spare you, I do have some major Lyme-related news. Every member of my immediate family has now been tested for Lyme, including myself, my sister, my brother, and both my parents, and every one of us has tested positive for late stage Lyme.

This confirms what I've been suspecting for months: I was born with Lyme disease. I contracted it in utero from my mother. The same is true for both of my siblings.

It's not likely both of my parents were born with Lyme. Rather, what probably happened was that one of them got Lyme as an adult and gave it to the other, since Lyme is sexually transmitted. My suspicion, although I can't prove it, is that my father gave Lyme to my mother, considering it's easier for a man to pass it sexually to a woman than vice versa. My parents were together for six years before they had any children, giving my mother ample time to disseminate and breed the borrelia spirochete prior to pregnancy.

There's no doubt that we children were born with it. We didn't all get Lyme independent from each other. And, looking back to our youths, it's clear we had it very early in our lives.

Still, it takes fully understanding the inner workings of borrelia to comprehend how we've managed to live relatively full lives with Lyme, and why some of us are sicker than others.

This is where I draw my seedling comparison: Lyme is like a seed. It requires the right environment to thrive and grow. The sunlight, temperature, moisture level, soil nutrients and other factors must be correct for the spirochetes to thrive. If these factors are not aligned proportionally, Lyme will lie dormant and the carrier will remain relatively unsymptomatic until the time comes—if the time comes—that the environment changes.

All five of us do indeed suffer from Lyme, but some of us suffer much more than others. Lucky for him, my brother is the least symptomatic. While his natural killer (white blood) cells are low and he has mineral imbalances, his health is generally good. Like my brother, my father was in generally good health as a young adult and middle aged man. Now that he's 70, a lot of very typical Lyme symptoms are flaring pretty aggressively.

Anyone can have Lyme and be healthy. But a traumatic event such as divorce, or a debilitating illness such as mono, or a move into a moldy apartment—or a number of other triggers—can cause the borrelia to suddenly replicate. Bam. It's called a Lyme flare.

Unlike my brother and father, I've been sick since I was a young child. Interestingly enough, two events coincided at exactly the time when I transitioned from a healthy baby to a sickly kindergartener: we moved to the United States, and I got bitten by a tick.

1987. That was the year everything changed for me. About six months after we moved from Saudi Arabia to Texas, I remember suffering from anxiety because I missed Saudi Arabia and I wasn't fitting in at my new school. But that summer, I recall a tick bite that became engorged on my hand. Did I start feeling sick before or after the tick bite? I don't recall.

I'm not suggesting that I wasn't born with Lyme. I most certainly was. But I may have been re-infected. It may have even been that the Lyme I carried would have remained dormant if I had not been re-infected. The tick bite may have been just the boost needed to make all the borrelia inside of me swim in synchrony.

In any event, it's fascinating to solve this mystery... a sense of closure, for sure.

Music: My Proud Moment

Hi everyone! This post is going to be a little off-topic, but I want to take a moment to share a personal triumph with you guys! As some of you might know, although I don't highly publicize it, I sing in a local band. It's one of my biggest passions and hobbies. I've been writing songs & lyrics consistently since I was about 14 years old, and in the last two years it's evolved into a full, five-person band.

Anyway, I'm here to tell you guys about three new songs we recorded and mixed this summer.

If I may, I'd like to take a moment to not only applaud my band for this accomplishment, but to applaud myself for reaching this deeply-meaningful goal in spite of my horrid physical state over the summer.

While I could have skipped out on band practices, I made myself show up every Sunday, albeit drugged, faint, nauseous, or in a lot of pain. Through my bed-ridden state, I managed to book the recording studio dates, find and hire a guest cellist, and coordinate our rehearsals. Herxing my butt off and full of biotoxins, I pulled myself out of bed when all I wanted to do was sleep, and I showed up, sang, held it together, and attended two very full days of recording. I didn't know if I'd be able to do it. But I did. And it feels wonderful.

My bandmates were supportive, responsive, and well-rehearsed. They showed up, did their thing and did it well, and I'm so proud to be involved in making music with them. Together, the five of us (six, including the guest cellist, and seven, including the studio producer) put our creative juices together to create three deeply touching, symphonic alternative pop-rock songs that showcase how far the band has come since we made our EP in 2009.

So, if any of you would like to buy these songs off iTunes, they're for sale for 99 cents apiece. The band name is Opal Axis and the songs are entitled Aperture, Halmahera Ride, and My Bane.

While we're not in this for the money, every purchase supports our mutual passion. Earlier today, my bandmate sent out an email to a list of several hundred fans we've acquired over the years, to inform them of the availability of these new songs. Our work is done for now. We're hopeful the songs sell well, but moreso, hopeful that no matter how many sell, the response is positive, because hearing that people like our music is the highest compliment we can receive.

Many thanks to you all.

Yosemite FAIL.

Last week, a few family members came to visit from out-of-state. The trip to Yosemite we'd been planning for months was finally upon us. As a nature lover, I've been wanting to get myself out to Yosemite for many years, so I was excited to finally have an opportunity to do so.

I don't quite know how to explain what happened, as the sequence of events are all a blur. I think I started to regret my decision somewhere along the five-hour road trip, as the winding roads and conversations layered over drab music were compounding my neurological symptoms. But I didn't fall truly ill until we arrived at our lodge at 5,000 feet altitude.

Even though I knew before we arrived that this trip was a mistake, it was too late to turn back; besides, I wasn't going to ask to turn the car around. But as soon as we arrived (and the altitude sickness kicked in) I did start looking for a way to get home. While we were only slated to be there for two-and-a-half days, I was sure I couldn't stay that long without paying a heavy price.

So I rallied the troops on Facebook. In just a few hours, I had lined up a ride for the next day with a friend of a friend who lives in central California. My Lymie friends are the best.

That night--the only night I spent in Yosemite--I slept on and off with pressure in my head, and awoke at 7 a.m. with an unusual discomfort in my stomach. Then, very suddenly, I was overcome with violent nausea, to which I swallowed a charcoal pill in hopes of it absorbing what I had presumed to be bacterial. But just moments after it went down, it came back up along with the water I'd drunk. Definitely the strangest vomit I've ever seen: it was black. Ha!

Soon thereafter, a medic on staff brought me an oxygen tank and took my vitals, pronouncing that he presumed me to be suffering from altitude sickness (no sh*t, Sherlock). A few hours later, my ride showed up and I was gladly on my way home.

This experience produced inter-familial accusations that I'm too obsessed with my Lyme & related diseases. Yes, I guess you could say that in a sense I'm "obsessed" but I think I've got two great reasons to be:

1. I went 29 years feeling consistently ill before I knew what was wrong with me, and

2. I'm trying to get the word out on this vastly-unknown epidemic. People should start learning about it.

In that sense, I'm focused on Lyme. But in another sense, I'm far from it--sometimes I forget I'm sick and put myself in situations reserved for the healthy, like, err, traveling to Yosemite, when I ought to do my body the favor of avoiding these situations.

But I like to live a full life, so I still participate in activities that wear me out but satiate my hunger for excitement. Fellow Lymies regularly tell me they're surprised at how much I do, like produce and record music, landscape my garden, and travel.

Obviously I'm biased, but I think I've got a good balance going between not dwelling on my illnesses but actively researching them and engaging in dialogue surrounding them. Call me crazy, but that's my opinion.

What particularly frustrates me is precisely what took place in Yosemite--I went, it was an epic fail, and I came home, but I tried. And my family, while meaning well, thinks I would have fared better if I'd not been so focused on being unwell.

I guess some people will never understand what it's like to be in the shoes of a young woman whose mind and heart lusts after so much while her body can't keep up.