did you ever have those dreams as a kid where the alarm was going off and you had to get up and get ready for school? the calvin and hobbes “my dreams are getting way too literal” scenario? my adult version of that is to dream that i can’t sleep. i wake up exhausted, my bones feeling like they’ve shed my skin and wandered the night in a sandstorm. my muscles feel like i’ve transported back to 1996 and am sitting slumped over a table at a village inn, waiting for the clock show me an acceptable time to go home so i can pretend i really did spend the night at a friend’s. last night trumped all of those dreaming-i-can’t-sleep moments.

first, i really couldn’t sleep. no dosage of pain killers or muscle relaxers seemed to touch the ridiculous pains radiating from my neck and shoulders. flipping around, readjusting my pillow time after time, i couldn’t figure out why they hurt so badly. my physical therapist had done some hefty adjustments yesterday but this pain felt disproportionate. the last time i looked at the clock it was 4:15 am.

i guess i drifted off into a dream about how i was in pain and i couldn’t sleep. it sucked just as bad as the real thing. in the dream, i started hearing a soft thumping noise. i made myself stiff, held my breath close to my chest and peered out into the darkness of the hallway. i heard it again, started to get out of bed but reached back under my pillow for a hori hori, a japanese gardening tool that’s essentially a 10-inch long serrated knife/trowel. and yes, in real life, i do sleep with one under my partner’s pillow when he’s not home for the night. i started to creep out of the room, wondered if i should grab the home alarm panel with it’s little red panic button, and then heard my cat shrieking. i looked up and saw a man running in a crouch after the cat, the most terrifying laugh bouncing down the hallway. i froze like a fainting goat, and fell over on my side. dream me was thinking “really? i’m going to go out like this? paralyzed with fear?”

i moved into lucid dreaming, hearing a noise that i thought was the burglar/serial-killer but slowly started to realize it was my panicked, little, thumping heart. i used my heartbeat to find my way out of the nightmare and once situated back in reality, i started to mull over the dream details. dream analysis obviously isn’t a science. i’d be ridiculed out of my academic family if i tried to argue that it was, but i definitely believe our dreams are telling us something, even if it’s just echoing our fears from the day before. in a lot of dream analysis, if you dream of a house, that house is you in some form or another. i interpreted this dream as the house being me and the murderer/robber to be the bartonella and spirochetes (aka: tick-borne diseases) that have infiltrated every major organ of my body. all these years i’ve wondered why my body turns on itself in this complicated and quiet hara kiri. it seems like my antibodies are trying to beat the universe to the punch, push me down before i can even try to fail, thereby saving me all the embarrassment of giving something my all and not quite making it. i’m not saying that i don’t actually have these autoimmune diseases i’ve been diagnosed with my entire adult life. i’m just saying that this (lyme disease) is different. it’s not just my body making war with itself. it’s a foreign enemy that has entered through my skin and actually enmeshed with my dna. it has burrowed into my red blood cells, replicated and forced out my healthy ones. now that i know it’s there, i feel like it’s filling up my body. i feel like i’m drowning in parasitic-like bacteria.

as a child, i did love  bill watterson’s calvin and hobbes but my real love was science fiction. ray bradbury’s short story, the veldt, is still, by far, one of my favorites (though you can’t imagine my disappointment when i met him as a pre-teen and discovered he was a sexist, old coot). i don’t know much about borrelia burgdorferi, but right now it feels like a sci-fi thief in the night, come to kill me from the inside out. at least that’s what my dreams are telling me.


i don’t want to be writing this.

i want to be laying on the couch with the lights off, both dogs asleep in their beds (instead of fighting over an unstuffed toy frog). i want to be watching something embarrassingly mindless on television, and eating delicious food that someone else cooked for me. but i’ve been watching t.v. for months, for years, actually, and i feel like i have to start writing about my experiences. maybe it’s so i don’t feel like i’m the only one out there suffering from “multiple chronic infectious disease syndrome” and “co-occurring autoimmune disorders.” statistically, it would be impossible for me to be the only person with the internets who can use these two long-winded terms to describe her current state. the reality is that i sure as hell feel like i’m all alone. this blog is my way of reaching out to anyone who might be afflicted in a similar way but it’s also my way of burning the white flag. if pathogens or bad blood are going to take me, they aren’t going to get me without a serious throw-down. the gloves are off, and i’m starting the fight of my life.

it’s entirely possible that i’m going to bore you away with this first post. even though i believe that will happen regardless of whether or not i say this, i’m going to say it anyway: i’ve just been diagnosed with chronic lyme disease and have been told by a lyme disease specialist that my treatment is going to be unpredictable, complicated, dangerous, and possibly ineffective. that’s the eventual focus of this blog, but i’m starting at the beginning.

i’ve been sick ever since i can remember. as a child i had ear infections, chronic colds, bald spots (alopecia), and floating joint pain and swelling. even so, i was a rough-and-tumble tomboy who camped in the boundary waters every summer, climbed trees and played until the last ounce of energy had slipped from my stick-skinny body. my parents were teachers and up until they could no longer physically keep my brother and me in the van on family vacations, we spent our summers driving around north america, camping in every national forest and stopping at any historically significant spot. in high school i played varsity sports, traveled the country to lead conferences and to teach other kids how to engage in politics, worked a couple of jobs for spending money, got good grades, starred in plays and sang solos in the select choir. i graduated early from high school, took classes at the local community college, sat on the board of our community’s glbt organization and even managed to book a few shows as a musician. as a teenager, i did it all, and even though i had more than my fair  share of illnesses, i thrived under pressure. i was at my best when i had five deadlines looming overhead and only four hours to sleep each night.

a few weeks before i started my liberal arts education at a small private school in minnesota, i went on a two-week hike in the bighorn mountains. i started school feeling like i was on-top of the world, but a couple of weeks into my first semester, i got sick, really, really sick, and i never got better. i could no longer outrun my illnesses. to my parents’ enormous dismay, i dropped out of school after the fall semester, worked three jobs through the spring and summer to pay for my first real apartment. the next fall, i pulled my health together enough to enroll in classes at the university of minnesota. my girlfriend and i were accepted into a government subsidized artist’s cooperative. i felt like complete shit, but i had sweet digs and a supportive partner. i was making amateur art, clocking hours in my darkroom and writing a lot. but by the end of my first year on my own, i couldn’t bend 7 out of 10 of my fingers, my right arm was practically paralyzed and i couldn’t lift my left shoulder above my waist. i’d had bronchitis for months, was wheezing and out of breath, exhausted beyond explanation, vomiting and trying to laugh off the longest lasting case of the runs i’d ever had.

in the spring of 1999, sitting in a doctor’s office with my ass hanging out of the back of nubby hospital gown i heard the doctor talking to a nurse outside the door.

“oh great,” he said loudly. “did you see this check list (of symptoms)? she’s marked every single one. i’m so tired of hypochondriacs.”

ten minutes later, as i was putting my clothes back on (which was incredibly hard to do since none of my appendages actually bent and i couldn’t even button my jeans.), there was a soft knock on the door. a nurse poked her head it.

“i overheard what the doctor said, so i took a look at your chart. you know, my sister has lupus and the symptoms that you’re describing are a lot like what she goes through when she’s having a flare-up. let’s just take you down to the lab and run a couple of tests.”

the tests came back positive. after a pulling a few strings with family connections, my mom came up to minneapolis, packed my feeble, broken body into her car and drove me down to the mayo clinic. a week after my nineteenth birthday, i was diagnosed with a mixed connective tissue disease with overlap features of sle (lupus), polymiyositis, scleroderma, and tenosynovitis. i remember asking my primary care doctor, a sweet old man with soft, liver-spotted hands, “what in the body isn’t connective tissue?” i don’t recall his answer. in my mind, they handed me an umbrella with the explanation “at some point it will rain.” i was relieved to have a reason for all of the pain and problems i’d been having, but i also thought it was a bullshit diagnosis. it seemed to me that anything that was to go wrong with me and my health would just get swept under the mixed connective tissue disease (mctd) rug.

at the age of 31, i can look back and say definitively, i was right. i believe my lyme disease could have been diagnosed and treated a long, long time ago, but my doctors either thought my symptoms were somatic or just another mysterious piece of my mixed connective tissue disease puzzle… and now i know that being right is often an empty victory.