our story

As is the case with many people with chronic illnesses, our story is a long, messy one, so this will have to come in parts. I'll try to post updates when a new section is completed.


Part One: how it began...

Late summer of 2001: I spent two wonderful weeks camping and hiking in Sequoia and Kings Canyon National Parks, located in the Californian Sierra Nevadas. One week in July, and another in August. A thriving 16 year old, I frolicked through meadows, climbed huge redwood stumps and boulders, and meandered through tall brush.

Here's the area I spent that time in:

View Sequoia & Kings Canyon National Park in a larger map

The symptoms began during my final week in the Sierra Nevadas. In the evenings, I experienced nausea and night sweats. I vaguely remember feeling "off" that week, but brushed it aside.

A week later, in mid August, an unusual rash showed up on my upper ankle. Being a typical teenager, I laughed it off as a weird bug bite or reaction to something. It was deep red in color, blotchy, itched horribly, and had a central clearing. I NEVER would have described it as looking like a 'bulls eye.' It went away after a day or so and I thought nothing more of it.

Several weeks later, I was slammed by severe headaches and debilitating nausea. I distinctly remember the day that it began. I was playing my flute in band practice, the day before 9/11, when a sudden powerful surge of nausea forced me to flee the room. I didn't vomit, but I felt miserable and my headache was excruciating.

The intense headaches and nausea persisted and significant sleep disturbances began because the nausea was worst at night. I was kept awake until nearly dawn with intense surges of nausea, spending many dark hours dry heaving over the toilet or lying miserably in bed, so tired, but unable to sleep.

Relentless, crushing fatigue quickly followed, along with general achiness. I began to lose weight because of my poor appetite and began blacking out and fainting. I truly felt like I was dying.

I became sensitive to sound - so much so that I couldn't bear to sit at the dinner table with my parents and brother because of the usual clanging and clinking of forks and dishes.

In a matter of months, I deteriorated to the point of being too weak to do much of anything besides lie in bed/on the couch, too fatigued to function, but unable to sleep. I had to pull out of school and struggled to even keep up with homestudy because of my severely decreased ability to concentrate.

Very early on in the onset of my symptoms, my excellent parents took me to see several doctors. Those details will be included in part 2...