Okay, so I don’t really heart lupus. But, it is something that is kind of part of me. And the challenge that it has put me through has led me to be the person that I am today. So, in a way I am grateful.
In April 2010, I had to look mortality dead straight in the eye. And we battled it out. I now knew with certainty that I wasn’t going to live forever. My carefree, invincible spirit flew out the window never to be seen from again. And on top of that, there was a chance that life, as I knew it and imagined it, would be cut short prematurely.
Death? Afterlife? Heaven? Hell? Earth? Worms? Eternal sleep? Rainbows and puppy dogs? Not being alive anymore? What?!
All I knew was that I wasn’t ready to die, at least not anytime soon. I still had things to check-off my list. But, after that phone call from my doctor with the diagnosis and as I lay suffering in muted pain, I knew that I couldn’t pretend anymore. As much as I didn’t want to admit it, I knew I had to accept the inevitable. I wasn’t going to live forever.
During the course of my first lupus flare I did a lot of research because that is what I do when I do not understand something. I research the hell out of it in hopes to get a grasp around it. And since lupus is not even understandable to doctors, I had to overturn a lot of stones and and in the process came across a lot of invaluable resources that has helped me in some way or another.
The Lupus Recovery Diet – Jill Harrington recovered from systemic lupus over thirteen years ago, by changing to a whole-foods, plant based diet. The book includes her story, as well as the stories of 12 other people who overcame autoimmune disease through their diet and lifestyle. This was one of the first lupus books I read all in one night. (On 60mg of Prednisone a day, you don’t get to sleep much.)
Lupus LA – Lupus LA, the West Coast division of the S.L.E. Lupus Foundation, promotes lupus research, awareness, and education, and serves the needs of people with lupus and their families in Los Angeles County. Lupus LA hosts an adult support group in the Thalian Auditorium of Cedars-Sinai Medical Center on the second Wednesday of every month. Guest speakers are scheduled every other month to discuss topics related to lupus including dental care, alternative therapies and coping with stressful situations. On average, 20 people with lupus and their supporters attend these meetings.
Time and Location:
Second Wednesday of every month from 7pm to 9pm
Thalians Auditorium, Cedars-Sinai Medical Center
8730 Alden Drive, Plaza Level, Los Angeles, CA 90048
Despite Lupus – Sara Gorman was diagnosed in January of 2001 with systemic lupus. She was 26 years old. Determined not to let a chronic illness dictate her plans for the future, she refused to admit that her busy lifestyle and indomitable attitude were hindering her chances for a long, productive life. After four years of running her body into the ground, she realized she was fighting life, instead of living it. Thus, she made it her top priority to start living well, despite lupus. The steps she took to regain the health and wellness she’d lost are outlined in her book, which my fellow lupite friend, Christina, had sent to me autographed by the author herself with a note of encouraging inspiration.
Still In Bed – My fellow lupite friend, Christina, on her personal journey living with lupus. She is a beautiful and strong soul and I find her will to fight and live the best life possible awe-inspiring.
The Lupus Book – A guide for patients and their families containing detailed illustrations and charts similar to those found in medical texts. Everything you need to know about lupus from a scientific perspective.
Crazy, Sexy, Diet – Kris Carr’s book helped ignite my healthy eating kick and introduced me to healing world of juicing. Carr lays out the fundamentals of her Crazy Sexy Diet: a low-fat, low-glycemic, vegetarian program that emphasizes balancing the pH of the body with lush whole foods, nourishing organic green drinks, and scrumptious smoothies.
But You Don’t Look Sick – The mission of ButYouDontLookSick.com is to help everyone with a chronic illness or invisible disability, in order for them to live their lives to the fullest and not feel isolated and alone.
And of course, my own personal journey that I am still slowly capturing in retrospect bit by bit. Follow me as I learn what it means to lead a healthy lifestyle. Or at least a clumsily attempt=)