Things are hard. Diagnosed with Lupus, I am weak and irritable. It’s the diagnosis I expected in 2021, when positive ANA and other results pointed to its likelihood. So many flares since 2018! Maybe we would have known sooner were I less allergic to hospital admissions. How bad can the pancreatic pain be if b!tch isn’t wheeling into the ER, right?
BAD BAD B!TCH & The Wolf Bite
Lupus is known as a cruel mystery that flares and can damage any part of the body. From the Latin word for wolf, it is attributed to the thirteenth century physician Rogerius, who used it to describe facial lesions reminiscent of a wolf’s bite.
Ahhhh, it’s as charming as it sounds. Lupus explains four gnarly years with Raynaud’s, weight loss, and increasing skin and pancreatitic woes.
I started new medicine, and all my feelings are amplified. Yesterday I didn’t like my husband’s driving as wild turkeys crossed the road, and I may have threatened to pound his wattle. These are strange days. My sense of humor is secure, but everything feels awful so I consume music and magic.
My overactive immune system and sensory integration problems keep things interesting. YOU HAVE EATEN AVOCADO TOAST, AND NOW YOU MUST DIE. This isn’t neurotic; just reactive, just pathology. It could take months to feel better so for now, rage adds colorful manic energy to my writing. Physically, I’m very frail.
The other night I left the house for sushi, and each footstep from the parked car to the table was slow motion. I’m always preaching slower living…we could maybe make slowmo a sexy vibe like this:
Is new life coming to blood, tissues, joints, and bone? Will disease turn to ease? Is this a descent? Will I be rearranged only to flare then flare again? I don’t know.
My mama says, It’s okay, God knows.
This is new terrain where the wolf bite has turned my feet to stone, where I’m inflamed with rage and curses. To survive, I have become BAD BAD B!TCH. It sounds harsh I know. Making the big bad wolf my petite chienne is absolutely critical. Don’t judge the drama of my trauma. Or go ahead; the B!TCH is unmoved.
She is not singularly bad; she is bad bad in the best ways.
Am I slaying this invisible wolf or taming it? I’m tired of warrior metaphors dominating Western medicine. I don’t need mindfulness as much as Bodyfulness right where I am. Also Bible.
“We don’t know what to do, but our eyes are on you.” – 2 Chronicles 20:12
BAD BAD B!TCH has x-ray vision and isn’t purely persona; she’s alternative medicine. A second wind. She’s lunar. Fierce. Not unlike an escape artist entering a portal of cosmic quantum energies. There’s no time for small talk or any more shrinking.
So she takes up a lot of space and looms large with atmospheric presence. The culture mostly discourages such unapologetic looming.
I like the B!TCH’s algorithm. She’s got nothing to prove and nothing to lose. She’s got tickets to Iron Maiden…
She won’t apologize for feeling rage all the way through and allowing it to exit the drainpipes of her arms and legs. (Thank you, Galina Denzel.) She’s all about traveling light. Oh my gosh. TRAVELING LIGHT? As in light traveling my way? How beautiful.
I have fought battles without BAD BAD B!TCH, but not this wolf one. I’m grateful for help from unseen realms coming to wolf-bitten, eighty-eight-pound ballet bods like mine.
I’m talking to God. Always talking to God. I am rocking out and dancing in unicorn rainbow pajamas. Turns out the wolf isn’t crazy about provocative, liberated postures.
I’m writing from bed and missing time composing at the piano. It’s a lifeline. If you’re the praying type, please pray strength returns so I can sing again.
Lupus may be a cruel mystery, but I’m no stranger to wolf bites. I can still be fruitful and enjoy fullness. It’s okay to not know everything I need in this moment. God knows. I’ll rest. I’ll seek grace.
With BAD BAD B!TCH energy.
Peace to you right where you are.
-BAD BAD B!TCH
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Michelle, you are in my prayers. God bless you.
Author
thank you
Am so sorry that you are facing these circumstances and challenges. Difficult to select the words that could provide some comfort. Please know that prayers are being said with the firm conviction that He hears all prayers, succinct and otherwise. Meanwhile, let that inner voice rage, it means you’re still in the fight.
Author
yes. thank you so much
Oh, I’m so sorry to hear this. Hoping you will get some relief from the new meds soon. Sending love from California.
Author
thank you 🙂
I just prayed for you, as you go through this horror. It is only by the grace of God that you can still be so creative and maintain any amount of humor. Thank you for sharing.
Author
thank you. it’s a nightmare i just hope to live through at this point
I am sending healing vibes and prayers your way.
Author
🙂
Michelle, I read this and immediately identified with what you are going thru. Even though I haven’t been diagnosed with Lupus I have many of the same symptoms as you, along with a positive ANA, Reynauds, lymph issues and many more. Just no facial rash that I can remember. BUT I have other autoimmune illnesses that are more than enough to put me on immunosuppressants which have helped considerably. I lost about 40 pounds over a few months and I too had a lot of anger and anxiety. Everything my husband did was wrong and I let him know it. Hang in there, it will get better and the meds will kick in. Get lot’s of rest and give yourself time to adjust to the meds. Sending prayers for your speedy healing. It’s a daily walk with God. big hugs, Debra
Author
I am so sorry to hear but I feel so joined all the same, and it feels so comforting to be in it with others. Thank you for the hope and encouragement and love. xox
I pray for you to be healed completely. You bring joy to so many of us and thank you for that.
Author
thank you for your kindness and taking the time to be here. i appreciate you and welcome the prayer.
My heart goes out to you and Bill. You are in my thoughts and prayers. You are a beautiful bad a$$ and warrior! You’ve got this!
Author
thank you, Amy. i’m smack dab in the messy middle of acclimating to medicine and weight loss, hair loss, skin changes, and rage and wondering if i will live through these changes while at the same time making progress with the pain and feeling that everything is being re-arranged yet fluctuating hour to hour. crazytown. i’m a mess. of course my body is responding violently after years of attacking itself. 🙂
I had to wait a couple before I could read this post once I saw the diagnosis. I knew it would be hard to read and you would be where you are. Rage can be a good thing when dealing with physical attacks. Perhaps bringing strength to fight from so far within us we didn’t even know it was there. Your mom is right you know, you will bounce around for who knows how long but you will bounce back. It takes someone else to believe in our healing when we have become undone. Someone did it for me so I know this to be true. I’m joining the ones who will believe FOR you until you can. The Wolf really does come to kill and destroy the sheep, this is not a fairy tale, it’s all too true. but you have a Shepard and you are not alone in your fight. I am deeply sorry, deeply. 🙏🏻
Author
you get it. yep. thank you for believing. there’s something so terrifying about the body turning on itself as mine has done for so long. to become your worst enemy and feel powerless. i have the shepherd. xox