Lupus & Me: The Mask

It’s one of those things that seems like it was forever ago and just yesterday all at the same time. I was sick and had a diagnosis.  I had lupus.  Finding information– that journey started off old school like– at the library. Not a digital library, the public library. I had overdue books and had lost them so I couldn’t check anything out. I sat there and read for as long as I could keep my eyes open.

I kept finding references to butterfly rash, the wolf and the mask. The two types of lupus I read about were discoid and systemic. You can have one or the other or both. I have both. After I discovered that my sad looking face was crusty with butterfly rash, I was disappointed. I had high hopes for something with the word butterfly in it. The shape of the rash sometimes resembles a butterfly. The body of the butterfly usually on the nose and the wings across each side of the face. This was not a beautiful butterfly.  My face looked blotchy red and the patches on either side of my nose would toughen up and take on a leatherly puffy texture that was as unbutterfly as you can get.

Growing up I was the only Mexican I knew that had freckles. My father and his father had the deepest blue green eyes. My sister and three brothers were all blessed with those eyes. I was the freckle faced brown one. I was freckled, loved and beautiful in my own way. When one isn’t blessed with apparent physical beauty, it’s not always a bad thing. As I was growing into my ears and teeth, I developed a talent for making people laugh. I would do the Pee Wee Herman dance or imitate one of my funny relatives. I could sit at the feet of the adults for hours listening to them talk. I knew that if I wanted to listen, I had to stay quiet. I loved the stories I would hear. They knew all us kids were listening and would throw in some of the old classics like the Llorona. Without fail, at least one of the adults present would tell of the time they encountered the Llorona.  There are many variations of the story but they all include a lady who haunts places while she cries a horrible wail.  She is crying for the children she drowned.  The Llorona divided her time searching for her children and fulfilling countless threats from my aunts, mom and older cousins to come and scare us if we didn’t behave.

Remedios, home remedies and speculation of what was causing illness among the family was another common topic after scary stories. Could it be Ojo or the unspeakable brujeria? My early days of lupus were filled with attempts from loving family and friends to cure me using remedios.

I was prescribed a tomato mask and tomato shampoo for the rashes and hair loss. Many prayers mixed in as the cures were applied. Eyes like hawks would ensure I was being a good patient. When the hawks left the room, I was left in the care of a glossy wooden frame graced with the Virgin Mary. I do not consider myself religious. My family said the Virgin wouldn’t mind and to this day she is on my wall. Did the remedios help? Who’s to say they didn’t?

8 thoughts on “Lupus & Me: The Mask”

  1. Oh, yes. I grew up with many remedies and surperstitions. Once, my mom put a raw egg under my bed because she said someone had given me the “Ojo”. I wish I could remember why she thought that was the problem.


  2. This is an amazing woman, full of energy and love for herself, and to share with others. She is a natural heat wave that will warm the coldest Hart. I am a fortunate human beeing, to have met her.


  3. Thank you my love! My angel, mi esposo, mi amor eterno ❤

    I am so lucky to have a partner in life like you to walk through the darkest times. You create a brightness in my day that I pray never dims.


  4. thank you for sharing as I have both lupus as well so I do understand and always nice to hear someone else story…sounds like you have a wonderful and supporting family…I have a smaller family now due to many things mainly my dad and my guy whom i wouldn’t change a thing on… my guy is my rock as well and my dad just wishes he could take the pain away my mother side of the family well not really in contact since mom passed but they never believed that I have lupus or anything wrong well it’s there loss on not being a part of our lil family… 😉 I think the one hard part about the butterfly rash as you said above is for me the looks I would get like I was a alien or they were afraid that they could catch what ever the heck was on my face lol.. We both are blessed as we have our rock in the darkest times and yes tried the homemade remedy as well with no luck but we keep on hanging in there… stay blessed my dear.. thank you for letting me share here… you have such a nice home here “i like it”… have a blessed day.. Suzette


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s