Diagnosed with lupus in 2010.
I was diagnosed with lupus five years ago at the age of 40. I remember feeling like my life as I knew it was over; all I wanted to do was sleep. It hurt to bear weight and even to get out of bed. I have always been an advocate for others, especially my son with autism, but suddenly I had to become my own advocate. It was up to me whether I would allow this disease, with no cure, to control my life. So, “out of the closet” I came, boldly sharing my diagnosis of lupus. I found that most people had no idea what it was. So as an educator, I’ve made it my goal to teach others about lupus. More importantly, I strive to give hope and encourage others that life does not end with a diagnosis.
I have always been an advocate for others, especially my son with autism, but suddenly I had to become my own advocate.
Lupus made me feel like I had lost myself. I was at a crossroads in life and had a decision to make—I could lie in bed, be depressed and bring those around me down, or I could take hold of my life, my future and my disease. I chose the latter. I knew I needed to rediscover who I was and what better way than entering a beauty pageant? I must have been crazy! I was overweight, out of shape, and had thinning hair, but this opportunity turned out to be life changing. Over the last couple of years, I changed my diet and starting working out with a personal trainer who I educated about my disease. I have since lost 50 lbs. and am in the best shape of my life at age 45.
Part of my Pageant Platform (the cause or organization a contestant promotes through her title and involvement with the pageant) is empowering those who have lupus and autoimmune diseases. Like so many others with lupus, I have overlapping conditions of Sjögren’s and Hashimoto’s. In May of this year I had a total thyroidectomy (surgical removal of the thyroid gland) and as a result now have total paralysis of my right vocal cord. I contemplated cancelling competing earlier this month for a national pageant—after all, how could someone without a voice possibly win? But as someone who tells everyone else they can “do it” despite having physical or health challenges, I knew I had to go forward with the competition.
Lupus made me feel like I had lost myself. I was at a crossroads in life and had a decision to make—I could lie in bed, be depressed and bring those around me down, or I could take hold of my life, my future and my disease.
I am honored to say that I won the title of Mrs. U.S. Continental on August 8, despite having lupus and no voice. I now feel even more empowered to encourage others like myself to get back in the game of life. I still have flares and times when I just don’t have the energy to make it through the day or even start it, and that’s OK!
My journey is unfortunately typical for many who are living with one or many autoimmune conditions. Trying to get to the right specialist to help uncover what is truly going on in our complicated bodies can often take many years. My story is no exception.
My challenge to you is to look at your life and decide who is choosing which path you walk: you or your disease? You are still the same beautiful person inside and out. You may just need to give yourself permission to be that person again. And by all means allow yourself grace. Pamper yourself, allow yourself time to exercise, meditate, and get back in the game of life. Don’t be afraid to let others in. If you are confident and open, people will be receptive. Who else is going shine your light, if not you?