As Alanis Would Say... Isn't It Ironic?!

Kristy
Feb 26, 2023
4 min read

I have been sharing on my social all month long about Rare Disease Awareness Month. It occurs every February and the 28th is set as the official date for Rare Disease Awareness. If you're anything like me, you're probably thinking... what does a Zebra and their stripes have to do with anything? Well, let me share:

"The zebra was chosen to represent rare disease based on a quote from Dr. Theodore Woodward: “When you hear hoofbeats, think horses, not zebras.” and “When you hear hoofbeats behind you, don’t expect to see a zebra.”

Dr. Woodward used this metaphor to teach the diagnosis of diseases. When examining the symptoms of patients, he taught to think of a more commonly encountered hoofed animal, the horse, rather than a zebra, considered to be more rare and less encountered."

So, every year on the 28th of February, we wear our stripes in support of ourselves with a rare disease and even more, to support the thousands of other people battling a rare disease.

Now, about the title of this blog entry and the irony behind it. At this point, you all know I have a rare blood disease called, ITP (scroll back a few posts if you don't know what this is). I've been fortunate to have stable platelets for sometime now. I went in last week for my routine CBC blood work and like the old ride at California Adventure, Tower of Terror, that was my platelets. Granted, they didn't plummet to the point of a hospital stay but they did plummet enough for me to be shook by it. You know when that ride drops suddenly? When those doors open and you can see over the entire park and then BOOM, you drop in pure fear. I had been totally fine for months and then during Rare Disease Awareness month, they just so happen to board the crazy train?! Isn't it ironic... don't you think?! The Universe must be playing a silly (sickening) joke on me. I'm used to her shenanigans at this point in life but couldn't they just hold steady for a little while longer?! Again, oh the irony!

I've also come to realize that I have ZERO control over my body. No matter how many times I do yoga, no matter how much green juice I drink, no matter how much papaya leaf I consume, no matter how much sugar I cut out, no matter how positive or optimistic my thinking is... NOTHING helps or hinders my platelets. This is usually a very hard concept for most people to grasp. Especially people like me, if it's broke, I want to fix it and unfortunately, I can't fix me. The other struggle is the deep, soul sucking fatigue. Not just your everyday tired from work, kids, pets, sports, etc. but down right to the core fatigue. My body is just exhausted every single time this happens and it's SO annoying. Like when Ursula takes Ariel's voice from her in The Little Mermaid, that's what happens to my energy. Doesn't my body know I have shit to do?! Get with the program immune system!

If you've made it this far... I thank you. I know it can be a lot to process or take in sometimes. Most people have a hard time understanding that I have rare blood disease because it's considered "invisible". On the outside I look like you're average Jane and you can't see my body attacking itself, you just see me. I try to smile even when I'm exhausted. I try to offer help to others even when I can barely help myself sometimes. I try to be patient with those people that just don't get it and that's OK too. It's so very true when people say, you never actually know what people are going through. Lucky for most, they don't have any clue what it feels like to fight this internal battle. I remind myself daily to stay strong and to never lose hope. Kindness and compassion go a long way; not just towards others, but ourselves too.

If you feel like showing your support, I'll be sporting my stripes on Tuesday February 28th and would love for you to join me. Snap a photo of your stripes and send it my way OR if I get to see you in person, lets snap a photo together. Without the support of the people around me, I'm not sure how I would have gotten through this diagnosis and disease.

If you don't want to wear stripes but would still like to show your support, you can also make a donation in my honor through the PDSA here: https://www.pdsa.org/tribute-donation.html

I've been fortunate to partner with the PDSA (Platelet Disorder Support Association) and even facilitate their support groups for other ITP Warriors. Donations help with many things but especially research. We need more research. We need more Doctors and Scientists to study ITP. We hope to one day find a cure. Until then... embrace the journey and occasional irony, hug your loved ones a little tighter and whatever you do... NEVER lose hope!