educate yourself

and learn about pediatric pain



Hi my name is Shira, I’m thirteen years old as I write this (February 21st) but I’m turning fourteen in a month (March 29th!) and who knows when you readers will see this! I’m a dancer, and even though I don’t dance much anymore because of medical challenges, I will always be a dancer because a dancer is who you are not what you can or can’t do anymore. I love music and play piano, the cajon, and sing. I have what I call the “rare disease trinity” EDS Type III, RSD, and Dysautonomia. And no matter what spell check and unintelligent doctors say, Dysautonomia is real. I also have a delta granule storage platelet pooling deficiency – that’s a fancy way of saying my blood doesn’t clot – Mast Cell Activation Disorder – a.k.a “have an allergic reaction to every substance in the world and not be allergic to anything” disorder – Hyperactive Immune System – my white blood cells think my body is a free for all and love to attack everything in it. Oh, and I have gastroparesis (another one that doctors and spellcheck don’t believe exist) which means most people break down food in 20 or so minutes and I do the same process in 160 minutes. Basically my body doesn’t like me.

I’m a big advocate for patients advocating for themselves. I believe that the best thing you can do as a patient is speak up! It’s your body and it’s your health, so take control! There is so much in your life that you can’t control so take an opportunity to take control of something that you can!

I’m likely the most stubborn person you’ll ever meet (or read about) if someone tells me I can’t do something it’s my mission to do it so I can prove whoever said that wrong. I live by these two quotes; “The best revenge is to accomplish what others say you cannot. So go and do it,” and “When life gives you lemons make orange juice and leave the rest of the world wondering how the hell you did it.” For anyone with a chronic illness of any kind I recommend looking to these quotes for inspiration because they’re true. As I mentioned earlier I love music. I don’t know what I’d do without it because it gets me through a lot of things. Here is my ‘for every mood of the week’ playlist.

  • GSY by Avery
  • Paris (Oh La La) by Grace Potter and the Nocturnals
  • You Can’t Always Get What You Want by (who else?) Rolling Stones
  • Breathe by He Is We
  • Unwell by Matchbox 20
  • The Cape by Eric Bibb
  • Don’t You (Forget About Me) by Simple Minds
  • Believe in Me by Demi Lovato
  • Landslide by Stevie Nicks
  • Change by Taylor Swift
  • Little Wonders by Rob Thomas
  • Soldier by Gavin DeGraw
  • Breakaway By Kelly Clarkson
  • These Are Days by Natalie Merchant
  • I Hope You Dance by Lee Ann Womack
  • Unwritten by Natasha Bedingfield
  • Just Like A Pill by P!nk
  • White Rabbit by Jefferson Airplane
  • Beautiful Day by U2
  • Big Yellow Taxi by The Counting Crows
  • Rehab by Amy Winehouse (make it your own!)
  • I Won’t Back Down by Tom Petty
  • Superman by Five for Fighting
  • Because We Can by Bon Jovi

Whatever emotion you go through there’s a song to fit, people underestimate the power of music and what it can do to help heal you. There are two types of music listeners; ones who listen to lyrics and ones who listen to the beat of songs. No matter which type of listener you are I guarantee you will feel better from just listening to some of these.

By the way – Check out my version {The EDS/POTS version} of Amy Winehouse’s Rehab! I wrote it and sang it. I hope you all like it.