I was first diagnosed with Lupus SLE in 2007. I was very ill at that time and had all symptoms of Lupus.

My diagnosis was easier than most because Lupus runs in my family. My sister who also has Lupus was diagnosed when she was in her early 20′s and it was through her experience that I knew about Lupus and its symptoms. I had to see my sister go through a Kidney Transplant in 2002 due to Lupus. My sister was 31 at the time.

When I was diagnosed I was not only having a Lupus flare but I was also having Liver failure. I was diagnosed at that time with Autoimmune Hepatitis. It was a shock to me but also extremely hard on my husband and foster kids that we had at the time. It was at this time I learned that some autoimmune disorders run together.  When I was a child I diagnosed with Hashimoto’s Thyrioditis not knowing then that it would be connected to anything else down the line. Since the original diagnosis I have been diagnosed with an additional autoimmune disorder called Antiphospholipid Syndrome which is a blood clotting disorder.

Living with Lupus has been a struggle for me. I am un-insurable and though my husband makes a good wage he is self employed and I do not qualify for insurance. I will never be able to be a stay at home mom with my daughter with the current healthcare system in place. Some days I feel like I can’t get out of bed but I need my job to pay for my insurance to provide for the life that I living.

Each day I struggle with the simplest of tasks but the hardest part of all is no one has a clue that you are sick. “Spoonie”  where I draw my Stringer’s Spoons name from is a term created by Christine Miserandino for all of us who live with an invisible disease. You can read about the Spoon/Spoonie Theory HERE. It truly defines what it is like to live with Lupus.  It seems like with Lupus we are always putting together a if/then scenario in our heads. If I take my child to the zoo then I will not be making dinner tonight. Also, on the flip side if I get a nap maybe I can go to my daughters school program that evening.

Being a normal parent is tough but with Lupus the expectations are not just tough they are just flat out exhausting and no one can see it except for the one who is coping with lupus.  My goal this year and as Mrs. Oklahoma City is to let people know that Lupus is affecting people every day. Hardworking  and friendly people who want to have a voice for research, affordable healthcare and  a cure.