In the Beginning…
A breach-birth baby came flying into the world not only butt first, but folded neatly in half (there’s a great picture of my legs flying up and kicking myself in the head), I’ve had an unfortunate series of medical mishaps ever since. However, the pig-headed stubbornness of my Puerto Rican ancestors was passed down to me in spades and once in my nearly-crippled-with-arthritis teenage years, I made myself a promise. A really big promise.
I was going to have an awesome life. No. Matter. What.
So after my first “adult” office job left me hospitalized, on chemo and with only 40% of my kidneys functioning, I remembered that promise and have been busting my butt ever since to create a new way of life – my way, where fun, work, love and everything else conforms to my health, not the other way around. It hasn’t been easy; just in the past 8 months, my kidneys finally gave up the ghost and I got a crash course in dialysis. However, unlike the thousands of others still chugging away on dialysis like troopers, a living donor stepped forward and I was able to get a life-saving (not to mention sanity-saving) transplant. Who knows what tomorrow might bring?
Such a path is not for the faint of heart; for me it meant moving back in with my mother and listening to her complain about my not wearing lipstick or perfume every day. It means acknowledging my limits and building ways around them. It means screaming joints and wreaths of bruises and fractured bones. I’m currently cobbling together a viable living hawking my writing and design skills along with photography, and whatever else I can get paid for. I’m a certified Peer Leader for the Chronic Illness Self-Management Program from Stamford and a certified Lakshmi Voelker Chair Yoga teacher. Occasionally, I sell handicrafts such as stuffed dolls, handmade notebooks, jewelry and embroidered goods.
Why Write About Lupus?
As a chronic patient, I’ve been in more hospital beds than boyfriend’s beds (sad, but true). Growing up with a body like a ninja – and by ninja, I mean it was lying in wait to try to kill me – meant that my views on myself, my career, my love life and my health were challenged early on. Being a rabidly curious guinea pig who’s up for trying just about anything, I’m always keen on experimenting with new medications, holistic treatments and other things. And being an opinionated woman from a long line of opinionated women, I decided to chronicle any interesting tidbits, not only for myself, but to hopefully inspire other people with lupus to find sneaky, clever, wickedly lazy ways to have more fun, get ahead in their career (or start their own) and live a fantastic life – on your own terms.
I’m not a doctor or medical professional. I’m not some fitness or health guru who’s been pumping weights since I was fetus. I’m not a life coach or therapist. I’m just a girl looking to have some fun. So think of me as that mouthy friend who rolls her eyes when you complain that something is impossible and way too hard. The one who then tells you “So, take a nap and try it again.” You know…the one you want to smack sometimes, but in the end you know she’s right. Because, no matter how “impossible” everything might seem, it can still be done.
What will you find here?
Aside from Lupus information and resources, you’ll find tasty tidbits on eating sensibly, traveling tips (I inherited a mean travel bug from my gallivanting mother), health ideas, some goofy stuff that I think is funny and interviews with some big bad lupus ass-kickers. Suggestions are always welcome – if you have lupus and are doing some awesome stuff, I’d love to interview you for the blog. Have an embarrassing question? Ask me! I promise to keep your name out of it.
Kudos, Interviews and Other Ego-Stokers
Article I was featured in for The Freelancer