Where shall we start...

For years, my mother has been "suggesting" (read: bugging) me to write about this. She thinks it is an issue of public health, and that my story could help other people. I'm hoping that my story can help me. Not that I don't love all of you, but I really could use some help.

I've never written about this before mostly because I could never figure out where to start, and frankly, because it's really painful for me. But I'm hoping that if I go back over my story, maybe I can find my own answer. And for that, I need to find my own beginning. Here are some options…

DRAMATIC: I found myself lying on the floor of the bathroom in another hotel, crying, screaming, begging my mother to kill me, because I was having another heart "attack", just hours after winning my first National Specialty with the Marge.

It happened, but it seems like a little much to ease into this story.

I could start funny...

HUMOROUS: I named all of my PICC lines. First was Geronimo, and every time I would attach my IV Rocephin drip, I'd yell out "Geronimooooooooo". A few PICCs later was Charlene, and let me tell you, she was a bitch. She was always stingy, causing problems at the site, just a general pain in the ass....etc, etc, etc.

The only problem is that I'm not finding all of this funny right now.

I could start griping...

MOAN-Y: There are things that someone inevitably says to me at least weekly. And I know that these comments come from a place of "love", or more likely, wanting gossip, but every time someone says it to me, it turns another little piece of my soul black and writhing to get out and strangle someone. Things like, "oh, aren't you done being sick yet?", and, "goodness! You STILL have that lyme thing?!?”, also, "well, I guess you'll never have kids", or my personal favorite, "oh you must be feeling better, because you look so good". If the day ever comes that I don't have to deal with this, I'm going to hire a sky writer to tell every single person I ever met, so please just assume I still have it until you see something else scrawled across the sky.

Or I guess I could just start somewhere near the beginning of this all going wrong...

My freshman year of high school, my knees started giving out from underneath me, and I was tired all of the time. I had been someone who bounced out of bed every morning before my alarm, eager to greet the day, and I increasingly became someone who would have to get prodded and yelled at repeatedly in order to peel myself out of bed.

My knees got to be so painful, as did my hands, that I went to UMASS to see a rheumatologist. He shrugged it off as growing pains, and said that since I wasn’t a basketball player or anything, and I was "just a pianist" that it didn't really matter, and I would outgrow it.

The fatigue became overwhelming. I had all manner of blood work run, and I was told that I was "just a teenage girl".

As high school wore on, and I wore out, my grades started to plummet (from an A average to a C average). My teachers called me lazy. As I was getting kicked out of AP English, I told my teacher that I wasn't lazy, that trying to read was impossible, because all of the words just floated around and didn't make any sense. He told me that if I wasn't lazy, then I was just stupid.

I told my doctor that I wasn't sad, but I just started bursting into tears all the time, for no reason. She told me that I was "just a depressed teenager", and prescribed anti-depressants, which I took. And then I was bursting into tears, exhausted all the time, with an angry edge of someone taking crack. My mom and I were getting along fabulously then!

I faked my way through high school, which was no small feat, and that preparatory school did prepare me for the future of having to fake it through college.

I went to college, and my mystery "disease" progressed to the point that I named it "The African Yellow Bellied Eating Sleeping Disease". It was awful. My clothes hurt on my body, I had uncontrollable muscle twitches, I had word retrieval problems, sensitivity to light and sound, and on and on. And it was really in college that this disease started taking away my life, piece by piece.

The first thing to go was my ability to play the piano (I started school as a music major). My hands burned all the time, and hitting a key was blinding pain. So, I thought, "that's okay, I can sing nearly as well as I play", so I sang, and sang, and sang, until the beginning of my sophomore year, and I developed vocal chord dysfunction. Basically, I would sing a note in my brain, and something entirely different would come out of my mouth. So fine. Fine, mystery disease, I'll just act.

Now, I was good. I mean nominated for the Irene Ryan Kennedy Center Scholarship twice kind of good. Asked to go intern at the Royal Shakespeare Company sort of good. I got every part I ever auditioned for. I'll say it to you now, even though it's hard for me to think about, I was downright brilliant.

I didn't know what true love was until I found myself wrapped up in Shakespeare in front of a live audience. And yes, I'm crying while I write this. I didn't know what it meant to give yourself, to bare yourself, to be yourself, to be everything outside of yourself, to be whole, and to accept that you find yourself in pieces. My god, I loved the stage. I loved creating with reckless abandon, getting to be evil, and good. I loved the parts of me that are Juliet and the parts that are Lady M.

And then one day, I walked out on stage, almost to the end of a run of Midsummer Night's Dream, and all the words were gone. Every single last one of them. I had no idea where I was, or what I was doing there. And it only lasted a few moments (which seemed like an eternity), and I realized then that the mystery disease had taken this too.

I muddled my way through my last year and a half of college – mostly with the help of my roommates and sister. And every day I would wake up worse than went I went to bed. And every one had an answer – stress, chronic fatigue, MS, brain tumors, rheumatoid arthritis – but none of them would ever hold up.

So, I went to Brigham and Women's to see one of the countries top Rheumatologists (since the only thing anyone could ever find on my blood work was an elevated rheumatoid factor). She declared that I had rheumatoid arthritis, and put me on prednisone. When that didn't work, she increased the dose. When that didn't work, she put me on Humira -- an injectable immune suppressant. All well and good, except that it says on the box, "do not use if patient has an active infection". We used the hell out of it. Sigh.

Fast-forward a few months, and I'm sitting in the Rheumatologist's office, and I say, "you know, my joints do feel better, but I poured an entire pot of boiling water on my hand, before I even noticed." She said, "that's not my problem. I only deal with bones, you need to see someone else". When I asked her who I should see, because I'd already seen Neurologists, Internists, Rheumatologists, Psychologists, Physical Therapists, psychiatrists, shamans, acupuncturists, traditional Chinese medicine practitioners, chiropractors, and dozens more, she just said, "well, someone else."

Which I suppose is the start of Chapter Two...Someone Else.