Saturday, 10 May 2014

Lupus Bites!

Today, the 10th of May, is World Lupus Day.

This year, I've been asking lupies to complete the sentence:  

Lupus bites because...

  • it shows no mercy and does not care who it destroys. (Elli)
  • the symptoms (major or minor) can hit with no warning. they can affect every waking moment and everything you do in some way or other. (Sal)
  • it interferes with my active family lifestyle. (Elizabeth)
  • there is no cure for this invisible stranger. (Roz)
  • it tears me in two... I am no longer who I was. My body and mind don't match my identity. I have a life half lived and dreams pass me by. I seek a way to find myself amidst confusion and pain. I look for a way forward and try not to loose hope... yes lupus bites, an unseen enemy with fangs bared. I fight on and pray for a cure. (Tammy)
  • its insidious, invisible nature destroys the body long before you know you've been bitten. (Roz)
  • no one knows how to kill the invisible beast. (Roz)
  • it's painful, tiresome, not understood by others, and makes day to day hard to get through sometimes. (Donna)
  • it zaps your energy. (Lisa)
  •  Lupus bites off more than it can chew! Invisible to the naked eye, it destroys each and every part of our bodies, bite by bite and no one can stop it. (Dianne)
  • it makes me feel like I have lost a huge portion of my identity. I am not who I used to be and truly miss being able bodied and energetic! I will always be strong, but won't always have the energy to back it up! (Stephanie)
  • I'm sick of being sick. (Janine)
  • it makes you feel older than you are. (Cassy)
  • my disease is not a joke from a TV show. (Eryn)
  • you create new Olympic sports called body tossing to make it 5 feet to the bathroom. (Bree)
  • I don't look sick but I AM sick. (Nicky)
  • its hard to enjoy summer not being in the sun. (Julie)
  • it steals your life. (Claire)
  • we have to take so many different medications to treat our chronic illness. (Cheryl)
  • it's aptly named the wolf because it sneaks up & attacks the mind, body, & soul. It tears a person to shreds until there is nothing left. The more pain it inflicts - the better it seems to enjoy it.When you think it's finished with you - it returns to inflict more pain and suffering. Lupus bites???- It sure does..... (Cheryl)
  • it nearly killed me. (Scott)
  • I wanted to be a doctor but who wants a doctor that can't be around infectious people? (Kate)
  • it's extremely unpredictable! (Teresa)
  •  it is hard to diagnose and it took 3 years of pain, belittling, and exhaustion for someone to finally hear me. (Hollie)
  • I'm sick, but I don't look sick; I felt 70 when I was 17; none of my family or friends can really understand what I go through. (Joyce)
  •  it robs  me of what tomorrow might be. Everyday before I open my eyes I take inventory of my body. What moves, hurts and what doesn't. (Mary)
  • I like going outside, I like having fun,
  • but the rays are bad from certain lights and the Sun,
  • it hurts so bad when there's so much to do,
  • it doesn't always growl to warn, that it's about to hurt you.
  • Lupus bites.
  • I'm too young to feel this old! (Patricia)
  • it has taken friends away from me, and taken their lives away from them. (Beth)
  • there's only so many times you can cancel at the last minute before people stop asking you to do things. (Iris)
  • it causes pain! Lupus bites all my joints. (Cheryl)
  • everyone doesn't believe the horrible pain I go through.Lupus bites when lupus wants to cause pain. (Valerie)
  • sometimes you forget you have it and pay the price later when you can't get out of bed or worse have to be hospitalized. (name not given)
  • I leave in my car to run errands, and get a mile down the road and forget where I had plans to go. So then I go through the coffee stand and treat myself. (name not given)
  • I have a great boyfriend but I'm married to my many pills and insurance. (name not given)

This one didn't fit the dot points (because it's a poem)
Lupus bites because
  I like going outside, I like having fun,
  but the rays are bad from certain lights and the Sun,
  it hurts so bad when there's so much to do,
  it doesn't always growl to warn, that it's about to hurt you.
  Lupus bites.

And finally, my response.... Lupus bites because it does't just affect me.  It also affects everyone who cares about me. It means I am unreliable. I let people down, and I hate that.

Keeping with the theme of today's post, I've added a new design (well, a variation on an older design) to the Shirt Shop.

1 comment:

  1. This is such a cool post.
    Its so nice to see so many different perspectives, and to know that there are other people who understand what lupus is like


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