Purple is the color of royalty.
It is also the color of Lupus Awareness.
May is Lupus Awareness month and I’m kicking it off with a brand new purple mani/pedi.
Next weekend, my daughter and I will go get purple streaks put into our hair (possibly my son as well) and on May 20th, Aaron will be running his very first half marathon which isn’t an official Lupus run, but we’ve decided to make it our own Lupus run.
Why?
Because we’re raising money for Lupus research, education, and advocacy. Life-saving research, and that is no lie.
I was diagnosed in 2010 and we are still working to get this disorder under control in my body. We are close. We are so, so close. But understand this has been the hardest, most frustrating, most humbling, most earth shattering thing I have ever done…and I have not done it alone.
Aaron and the kids have been there with me every step of the way and have honestly had the harder job. My job? My job has been to rest and to lay around a lot. I mean a lot. Much of the time with an IV in my arm giving me infusions of IVIG and, now, Rituxan.
Life still goes on around us, despite all of my doctor appointments and treatments. There is still laundry to be done, lunches to be packed, dishes to be washed. And I spent the first year or so of this diagnosis fighting back the wrong way, making myself sicker.
I wanted to still be the best Mom, Wife, Co-worker anyone could ask for despite losing organs left and right. Another reason Lupus education and advocacy is needed. So other women and men do not make the same mistakes I made.
I am learning to live with a chronic illness and admittedly suck at it, but I am getting better. But it has been very hard, and there has been a lot of damage along the way.
More people need to learn about Lupus. More families need to hear our story so they don’t do what I did, and everyone needs to donate what they can so a cure can be found.
You have also helped me and my family along this journey. Lifting us up in spirit with laughs, with love, with meals, with hats, with gifts…for what seems like so long now. But that is the way of Lupus, it does not go away. It does not disappear after surgeries and medication. It is always there.
Which is why I am thankful YOU are always there too.
So Put On Purple, and continue to walk this journey with us.
With all my heart I thank you because I want to be around to be a mother to my children, a wife to my husband, and a friend to you.
I’m there with you. I’ve never had any idea how devestating lupus was until I started following your journey. Another friend had it but never really detailed it. I’m sorry that you and your family have to deal with such a shitty process, but I’m glad you’re FIGHTING it. I’d have given up long ago, I think.
I was diagnosed with Lupus in 1999, after a nagging pain my knee just wouldn’t go away. My doctor at the time (he’s now retired) took one look at me, saw the all-to-familiar butterfly rash on my face & sent me for the first of many sessions of bloodwork. I was terrified when the diagnosis came back, because I had no idea what Lupus meant. But I’ve educated myself and live a relatively normal life… with the occasional flare-up. I’m quite lucky to not have the more extreme symptoms like you, Erin, but I still suffer from the disease, in my own special way (photo-sensitivity, joints, eyes and blood issues) . I want to see a cure in our lifetime so people don’t have to live in fear of ‘what next’ and have fulfilling ‘normal’ lives.
Good luck with all of this!
I will most certainly wear purple for you. My FIL has lupus, but I have to admit that I’m not really that familiar with the disease. Time to educate myself!