I try to manage my time to conserve energy.
A lot of people asked me if it was frustrating not having a clear specific diagnosis, but I didn't mind, I just chose the most optimistic diagnosis.
Concealing an illness is like keeping a beach ball under water.
I am enormously honored to be one of the spokesmen of the New Age Womens Health Campaign, so you'll be seeing me in public service announcements and public appearances supporting the campaign.
I did as much research as I could and I took ownership of this illness, because if you don't take care of your body, where are you going to live?
I don't have feeling in my feet to my fingertips; I also have active lesions in my bone marrow and in my eyes.
I just had that conversation this morning with my doctor. I just got back from the hospital a half-hour ago, and nothing will make me happier than to replicate the DNA of my amazing husband. I'm optimistic.
The lesion is in the area of my brain that is responsible for motor function, so I have continual chronic pain in my left arm from elbow to fingertips and the right side of my body from my ear to my breast area.
I still when I wake up hit the ground running; and having an illness, I'm only one of hundreds of thousands of people that live with an illness, and I'm just in awe of the bravery and dignity of the people I see at the hospital.
In a way, I have simplified my life by setting priorities.
In addition, I'll be attending women's health expos and medical conferences with the goal to promote dialogue between women and their health-care providers.
In the beginning, when I first found out I had a disease that was incurable, emotionally I had to get used to the idea of being sick before I could think about making any other major decisions in my life.
My family has been amazing, and they understand how blessed I am. They've been able to keep my sense of humor.
My friend had a funny remark; he told me everybody has something - some people have a big butt, some people are insecure and at least you know what it is, even if it's a lump on your head. I know I have a lump on my head.
I never expected in a million years that I would have the honor to become an advocate of women's health care and education, and I'd dive on a live grenade to get this message out, so thank you for this forum.