September 15th, 2009
Dearest friends and family,
Yes, it is past 3:45 am and I am still up. Don’t be mad, it’s the steroids’ fault. It doesn’t let me sleep sometimes. Tonight is one of those nights. I just wanted to tell you that I have started a blog about my journey living with Lupus. This is a big step for me. I’ve found it hard to share my struggles or even the fact that I have this disease, but I was inspired by an actress named Lisa Ray. She was in the Canadian film “Water,” which I saw and I was captivated by her performance. I found out the other day that she had been diagnosed with a rare form of bone cancer and that she had started a blog to share her experience with the world (lisaraniray.wordpress.com). I went to the blog and was surprised to see that she is undergoing chemo and taking steroids… just like me. I read in amazement as she talked about her sleepness nights and her weight gain and her “moon face.” It gave me so much comfort to read her blog, to see how strong and beautiful she is and to know that right now she is probably wide awake in Toronto, just how I am here. So I started one, too, and I hope I can inspire other people with lupus and show them that they can get through it, that they aren’t alone. And maybe it will help the medical community solve this mystery called lupus or even solve some of the mysteries of the brain. I am offering myself up as a lab rat to the world and the best thing is that no animals get hurt (PETA would love me!). This blog also serves as a way to keep my family and friends informed and updated on my medical condition. It gives me a way to post questions as I do my research and empower myself by finding out more about my disease.
I used to be scared of the “blogger universe” with all the personal sharing and all that, but now I see it as a powerful tool that, if used correctly, can instigate powerful change if only in the form of one girl finally realizing that she is not alone. There is someone else who feels the way she does and look at her – she’s still here. And I am still here, people. I’m not going anywhere.
I love you all. I hope you enjoy reading it because I really enjoy writing it.
I wrote this email during a severe flare-up of Lupus Cerebritis (brain tissue inflammation), which, in combination with a high dose of Prednisone, resulted in a period of psychosis similar to that of bipolar mania. For eight years, I was very private about my struggles living with Lupus. When my lucid mind returned, I was horrified to realize that I had been broadcasting my very personal, and at the time, very manic experiences for the entire internet universe to see. Ultimately, I chose to continue telling my story, because although I was not entirely myself when I wrote the letter above, my desire to reach out and connect with people remains the same. Originally called “Lupus Face: One in a Sea of a Thousand,” now titled, “Face Forward,” this blog is meant to be a meeting place, a virtual hug to my readers (lupus and non-lupus warriors alike), and a way of keeping myself accountable in my journey to live a life of balance, health, and epic adventure. The domain name, lupusfaceforward.com, merges the original and current blog title. It reminds me to move forward, but to never forget the lessons of the past.
Thank you for coming by and being part of my journey and hopefully, sharing some of yours with me.