I just finished watching a series called The Night Of on HBO. One of the main characters in the show suffers from severe eczema. In the last episode he is under serious pressure to meet a deadline and the stress from work sends him into (what us lupies call) a flare.
“I’m going to be honest with you. This isn’t what I normally do. I mean, obviously someone who looks like this doesn’t make his living doing public speaking. I’m sorry you even have to look at this.”
This hit way too close to home for me; feeling like a monster with wounds and scabs on my face. Nothing to hide behind so just growing a pair and facing it all head on with no shame. What else can I do? Pretend like its not happening? What good does that do? So I go on with my everyday routine, praying that it heals up and just try to take care of myself.
Sometimes its presents itself as impetigo, usually on my nose in and on my nostrils.
Out of all the creams and ointments the doctors have given me to use, I have found the best thing to heal it up is simple anti-bacterial soap. Keep my hands off and no picking! The more I touch it the bigger chance of it spreading my other parts of my face … like my mouth or lips …
It can also present itself as the butterfly rash. Which, when it really acts up, can spread down my neck and chest like so:
My most recent ‘show’ of lupus has been these stretch marks caused by my use of prednisone. It looks like I am a body builder! These really bright red, wide marks all over and around my arms and armpits. Also on my hips and legs.
At first, it was really upsetting to me. Why was my body doing this? As soon as I start to feel better, these permanent scars pop up all over. Its hard to feel sexy or even normal when literally everyone notices them. First thing. Some people can’t help themselves, strangers will ask me “What happened to your skin?” Family members ask, concerned “What’s happening?” … Its impossible to hide from unless I plan on wearing long sleeves for the rest of my life (which I have no intention of doing!) So rather than hide from these imperfections happening to my body, these things that I simply cannot control, I wear them proudly!
I am alive and I have a story to tell. I wear my scars like a badge of honor, because they truly show how hard I’ve had to fight for my life. I am a lupus warrior ❤
All my love, your favorite spoonie