I have been encouraged on this journey by reading and watching your stories I've cried with you and laugh with you even celebrate with you lupus Warriors.
You have encouraged me to fight even harder and I want to thank you for sharing those private moments.
Sometimes the smile hurts.
I never knew having lupus would push me to make every tear, laugh and Scar beautiful. It's not the life I planned for but it's an amazing life and a beautiful Journey.
My name is Lavida Medellin. Maiden name Rainey. I am 45 with 4 children and now 4 grandchildren. There was a time I didn't even know if I would see my children grow up and now I have grandchildren it's amazing.
I was diagnosed with lupus in 2007 sadly I had no idea what lupus was and had to try and look it up the best I could. I have done so much time in the hospital that nurses started to know my family better than I did. Even though my children are grown now when they were little on my painful days I would have candles lit in my bedroom and have movie night where the kids would jump in and we would eat pizza.
It was always hard watching mothers take their children to do activities that I couldn't do it was hard enough for me to even get out of bed to go to the kitchen much less take him to the park and play or go swimming. Our Saving Grace was music and movies. I did the best I could it wasn't perfect but I tried to make the good days special. Painting, telling spooky stories or adventures. Which were sometimes just to the river or trees to find out own magic.
Never underestimate dancing around silly in your pajamas with your kids those are the moments they remember.
Some days I would soak my pillow in tears because my body had a mind of its own. Losing my hair was one of the most humbling moments of my life. I could tell that it scared my children so I kind of giggle and say I've always wanted to try scarfs anyway. Like I said sometimes the smile hurt.
If you get really sad or have mood swings a journal is a great idea because you can be honest in there nobody ever has to read it but you but at least you can go back and forth and see if it's gotten better or worse.
Take a lot of pictures so you can remember the good days and even the bad days or things that go on with your body that you may not be able to explain to your doctor pictures will always help.
Lupus is completely out of your control but always remember I can't touch your beautiful soul.
I'm very happy to be bringing awareness of lupus out to the public it's a painful disease that should never be suffered alone.