I attended a boarding academy for high school. The campus was located down the coast from Santa Cruz and was amazing. We were nestled between a serene private beach and a lush wooded area. We had a dairy (complete with aroma) along with strawberry and kiwi fields.
As you might imagine, the potential for teenage escapades was huge! My memories are full. Sliding down the ice-plant bluffs on cardboard remnants, beach fires, romps through the woods to secret forts... I fondly remember hiding in the brush on Zill's (Zell's?) road with my best friend, waiting for our ride for some off-campus play. Some of my most treasured memories are of my close-knit group of friends (we called ourselves the Ferts - long explanation). We loved climbing out Dawn and Allysa's window at night and ferting around the campus. We inevitably ended the night, or morning, with a "Bitch Fire", our description for our girls only beach fires.
Early in my senior year I was hit with the most unholy of head pains. I sincerely thought I had a brain tumor or an aneurysm of some sort. I remember sitting in the nurses office, begging for relief. The headaches continued throughout the year and joined forces with extreme fatigue, episodes of blacking out, and anorexia. The nurse took me to the local doctor who just figured I had migraines and sent me home with a prescription for Cafergot.
The headaches, and prescriptions, continued to plague me over the years along with other mystery ailments. I even had surgery in 1995 in an attempt to find relief. None was found. Doctors labeled them as Severe Episodic Cluster Headaches with a Migraine element. Many doctors were seen and tests run. TOO MANY. They said I had some sort of idiopathic dysautonomia. It means my autonomic nervous system isn't working properly and they don't know why. They offered me little that helped, but I eventually discovered that antibiotics seem to keep the headaches at bay.
Over the past few years, my dear friend, Leanne, has been encouraging me to go see a doctor in Chico who, she thought, could help me. I've been to many doctors over the years and have developed a deep cynicism in regard to the practice of medicine. I was attempting to manage my mystery illness on my own, but in the midst of another flair of symptoms, I contacted Leanne for that doctor's number.
After some long phone interviews, I made the trip out to Chico and donated some more vials of blood. The consensus? Lyme Disease. Apparently, Lyme Disease is endemic in Santa Cruz County. It would seem that, at some point during my campus rompings, I picked up a small tick. A tiny little speck of evil which proceeded to steal huge portions of my youth away from me.
I remember a classmate of ours giving a presentation to the school about the dangers of Lyme Disease and it's presence in our own beloved woods, and yet, it never occurred to me or any of my doctors over the years.
So now, I'm attempting to kill the beast. Many shifting antibiotics and other meds are at play. They, and the Lyme, make my life... well... entropy. Doctor wants me to go on IV antibiotics. He says it may be the only thing that will do the job since I have many neurological manifestations of the disease (after 20 years of hosting it's party). Of course, insurance doesn't want to cover it because, turns out, Lyme and it's treatment are highly debated issues in the medical and insurance communities. Great.
Frankly, I have my doubts that I'll ever get better with these treatments. I've had this for so long and have tried so many remedies... just don't know anymore. All I know is, I'm 36. I'm too young to be this old. So, I'll take the magic potions and hope...
Was it worth it? All the misadventures which seem to have paid off in 20 years of ouch? I don't know. I guess I'm still glad I didn't behave. I figure, I could have just as easily picked that tick up on a nature walk.
Beautifully written. Wish I could give you a hug.
ReplyDeleteYou just did.
ReplyDeleteDid you ever remember finding a tick on you during that time? I've heard of this on Mystery Diagnosis (which I watch all the time because of my mystery pains). I REALLY do hope you can find some relief now that you may have narrowed this down. That must explain why antibiotics helped with the headaches! xoxo
ReplyDeleteI don't remember THE tick. I don't even remember a bulls-eye rash. I guess, less than 40% of people with Lyme disease recall a tick or rash. Ticks can be very small - like a freckle. They don't hurt when they bite. They're easy to miss.
ReplyDeleteWow wow wow. That would be both fabulous and frustrating to find this was/is the answer.
ReplyDelete