Hello, Arthritis World!
Written by Kristin 2.0 on September 22, 2009
I remember the exact moment when I was first told I had scleroderma.
I felt relieved. Vindicated.
It was a typical, sunny California day (April 21, 1996, to be exact). I was on top of the world — excited about prom, my final choir concerts, awards banquets, and the acceptance letter I had just received from a prestigious university.
My mom was driving me to a new doctor in Los Angeles, somebody I prayed would turn me from a hypochondriac into a legitimate patient. I still recall the exam room table paper crunching beneath my legs as I waited.
She walked in the door, sat down in front of me, and — wasting no time on idle chit-chat — told me I had scleroderma.
“Yes!” I thought. “My aches and pains are real! Sclera-what?”
I felt empowered. I could go home that night and tell my brothers and friends that I wasn’t just a drama queen — I was in fact really sick. However, as I shifted my gaze to my mom, and then the doctor, my stomach quickly turned to knots and I froze. As a nurse, my mom knew immediately what I did not.
I had just been given my death sentence.
I ache, yawn all day long, snap, crackle, and pop, can be irritable and cranky, and am most definitely creaky. I’m Kristin and, no, I’m probably not really “doing great,” even though I’ll tell you I am.
It would take many years before the gravity of my diagnosis settled in. And in the years since my diagnosis, I have executed a precarious dance between The World of the Sick and The World of the Healthy. As I embarked on my professional opera career and was finally beginning to understand the tricky footwork of scleroderma and spinal stenosis (my first arthritis diagnosis in 1994), I was diagnosed with narcolepsy, a sleeping disorder. And as if the twirling and spinning from three diseases weren’t enough … I was soon after diagnosed with Meniere’s disease, systemic lupus, and most recently fibromyalgia.
So pull up a chair, grab your favorite drink, and let’s get comfy!
Because I’m just like you. I ache, yawn all day long, snap, crackle, and pop, can be irritable and cranky, and am most definitely creaky. I’m Kristin and, no, I’m probably not really “doing great,” even though I’ll tell you I am. An average day in my life means that I can’t sit for too long, I can’t stand for too long, I can’t be cold, I can’t be stressed, I can’t stay awake, and I never stop hurting. I have to monitor every morsel I put in my mouth in order to exert some control over my unpredictable stomach.
I once was a little girl with big dreams — as evidenced by my early rock concerts in the backyard using my mom’s long handled sprinkler as a microphone, or my dinner serenades with my blue Smurf guitar — often performed naked, after a bath (aptly named “The Naked Show”).
But my dreams of singing on the great stages of the world have been challenged by each and every one of my symptoms — forcing me to adjust my dreams to include my limitations.
I used to be That Girl — the one to whom everyone would say, “At least you know what you want to do with your life.” But now I’m just a girl searching for her voice and wading through the murky, chaotic, and uncertain waters of a life with arthritis (and a few other illnesses to boot).
An average day in my life means that I can’t sit for too long, I can’t stand for too long, I can’t be cold, I can’t be stressed, I can’t stay awake, and I never stop hurting. I have to monitor every morsel I put in my mouth in order to exert some control over my unpredictable stomach.
About 13 years ago I became involved with the Arthritis Foundation — first as an attendee at the Juvenile Arthritis conferences and then as an event and conference volunteer, camp counselor, public speaker, and public policy advocate. It was through this work that I first heard about Seth and the CreakyJoints community. Over the years, CreakyJoints has been a refuge for me, a place where I can find comfort and inspiration. And that’s thanks to all of you.
I now extend my hand to you and invite you into my world — I’m just a single gal living in a big city, working a fast-paced job and trying to live a fabulous life. I’m a little bit Texas, and a lot California. Many of the things and people I love most — the mountains, the Pacific ocean, my favorite Mexican food, my family — are many, many miles away. And the life I had mapped out for myself when I was a teenager is a distant memory.
But I do the best I can, armed with my Plaquenil, Topamax, and 20+ other medications — and hanging on tight each day. I may not be the Kristin I once was, but that doesn’t mean I can’t be an even better or more distinct Kristin.
George Bernard Shaw couldn’t have said it better: “Life isn’t about finding yourself, life is about creating yourself.”