Lupus Awareness Month: K(NO)W LUPUS

Since May is Lupus Awareness Month, I’m planning two posts on lupus. The first is what it is, and the second is how I cope with it. To begin, this is the lupus that I know.

Lupus is:

  • being told you’re lazy because no one knows you’re sick – not even you.
  • not knowing that bad case of acne is really a malar rash and wondering why it itches so bad and how it got infected.
  • looking in the mirror and seeing the scars and wishing you’d known sooner what it was.

Lupus is:

  • losing words. Using the wrong word. Trying to explain something over the phone and hearing yourself saying things you know aren’t right, and wondering what the person at the other end of the line thinks of you.
  • not being able to find your keys when they’re six inches away from where they’re supposed to be.
  • leaving your house to go somewhere and not remembering where you were going.

Lupus is:

  • not being able to make dinner without your waist-length hair falling in your food.
  • cutting your beloved hair off and not being able to make dinner without your inch-long hair falling in your food.
  • trying to hide bald spots from chemo by doing a comb-over.

Lupus is:

  • yet another root canal.
  • catching every cold, virus, pink eye, case of the sniffles, stomach flu, and ringworm that comes along, and being sick twice as long as everyone else.
  • Bronchitis. Laryngitis. Asthma. Not being able to breathe in the middle of the night and running the shower full blast and forcing your breaths to come slow till you can inhale again.

Lupus is:

  • numb toes. Numb fingers. Numb face. Numb anything.
  • ants crawling up your arms and legs but there’s nothing there.
  • not being able to wear heels anymore.
  • not being able to wear flats anymore.
  • bruises from bashing into furniture and grabbing onto walls so you don’t fall down.
  • bruises on your legs that won’t go away.
  • wearing shorts anyway and pretending other people don’t stare.
  • playing connect-the-ecchymoses-on-your-legs with your kid to entertain her.  (Washable markers are a great invention, aren’t they?)
  • not being able to tell whether you’re moving or not.
  • needing a cane to keep you from going splat on the ground when you’re carrying your baby.
  • splinted wrists and splinted elbows and steroids to chase the pain away.
  • fingers that won’t bend.
  • fingers that won’t unbend.

Lupus is:

  • falling asleep any time, any place, with no warning.
  • missing out on the end of a movie because you fell asleep.
  • worrying whether you can drive home without passing out at the wheel.
  • wearing a medical ID bracelet in case you pass out at the wheel, so the babies in the back seat can be identified.
  • barely staying awake long enough to work part-time and being tied in knots every month because there’s never enough money.

Lupus is:

  • preeclampsia threatening to take you and your baby.
  • a tiny baby in an incubator with tubes and wires.
  • nurses coming in at all hours and poking you again and again because your blood counts are dropping crazy fast.
  • doctors criticizing you because your blood pressure is still too high, even when they’ve tried every drug they’ve got, and telling you it’s your fault, you need to relax.
  • wondering how the babies ever survived with you as their caretaker.

Lupus is drugs that:

  • give you nightmares.
  • keep you awake.
  • knock you out cold.
  • cause your heart to beat too fast.
  • make you bleed.
  • make you go blind.
  • increase your chances of getting cancer.
  • shred the lining of your stomach.
  • can hurt your baby so you don’t take them.
  • don’t help but you take them anyway because there are no other options.

Lupus is:

  • wearing socks, slippers, sweatpants, leg warmers, a shirt, a sweatshirt, a hoodie, fingerless gloves, and three blankets and still being so cold your teeth chatter when you try to talk.
  • having to run warm water over your hands to thaw them out after going grocery shopping.
  • running fevers for no reason.
  • never being able to tell whether it’s warm or cold and not knowing how to dress appropriately.
  • wearing sunblock and carrying a hoodie every time you leave the house.
  • trying to find sunblock that doesn’t make you smell like a swimming pool or a piña colada.

Lupus is:

  • bleeding retinas.
  • being terrified of losing your eyesight.

Lupus is:

  • bad dreams and no one to tell you it’s alright.
  • panic, can’t breathe, darkness closing in, no escape.

Lupus is:

  • being left out because their plans don’t fit your abilities.
  • being ignored because you’re too much trouble.
  • watching the world go by without you.

Lupus is:

  • not being able to tell anyone you’re sick so they won’t discriminate against you.
  • hoping whatever is wrong gets better on its own because you have no insurance and no money.

Lupus is:

  • explaining again and again and again what lupus is, hoping that maybe this time someone will understand, but knowing they probably never will.

 

 

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  1. #1 by Rachel Block Smith on May 15, 2015 - 1:41 pm

    Thank you for sharing this list. You’re right, no one will ever completely understand, but your effort to communicate it does make a difference. Even other lupies might have a different spectrum of events that you. I CAN relate to having a chronic autoimmune condition with a broad array of symptoms that never go away. Most of the time I don’t tell my friends and family and just suffer in silence. It sucks.

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