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Hi, it’s been a minute, new blog post. Link in bio.
Gotta get back to Hogwarts Gotta get back to school Gotta get myself to Hogwarts Where everything is magicooooool
Mischief Managed.
I solemnly swear that I am up to no good. #leakycon #leakycon2018
Y’all, check out my friend Baileys announcement!! I’m so excited for her and super pumped to watch this series she’s a part of! #Repost @catchingbreaths with @get_repost ・・・ The concept is simple: follow someone’s journey from surgery to stage. Showing the life of a mucus mutant. Showing the life of a bilingual Deaf family. Showing the life of a dancer and @companythreesixty dancers. It technically hits all the hashtags: #spoonie #deaf #adultballerina #bodypositive #chronicillness. It hopefully connects with many communities and provides another voice in the chorus of those wanting representation in media abound. It is positive: a positive network with a positive focus wanting to counter the negative swarmy troll farm that is most modern media to date. But... what if the concept becomes a reality? What if I show not just the recovery from latest rounds of surgeries... but the pain and swelling and funk between? What if I don’t fulfill some sort of diagnostic paradigm being that I am an Atypical diagnosis (and someone who hopes not to be defined by that anyways where I can)? What if we capture not just the invigorating process of putting together a show with women I ferociously admire and protect... but also, how totally messy dance life can be? What if we showcase a family that’s equal parts Deaf as hearing... yet our variable mix of signing, reading lips, caption and speech isn’t in keeping with what the world wants from us? Choosing to share our story has come with a lot of IFs... but we are braving it none the less. Although I can’t believe our pilot episode premiered TODAY and that I can finally announce the news... fear of judgement subsists. Can perspective, positivity and living an imperfect life as openly as possible actually be of benefit? The verdict is still out... but I’m excited to try. I’m excited to see. And I’m excited to get started.▪️Click Link In Bio To Watch The Pilot Or Go To:▪️#CatchingBreaths
The builders weren’t out today, so I decided to have one last hoorah in our still empty, hurricane Harvey-Ed house. They’ve finally begun repairs, and I’m super pumped for it to be fixed, but also a bit sad at the loss of the house as we knew it and how it was growing up. Here I’m in our game room, the red wall is my bathroom, and to the right is my old bedroom, where I was the night before the storm came. The bed I slept on had ceiling and insulation fallen on it the next day. Still pretty surreal almost a year out. TL;DR I love my new @sodancausa dance sneakers I got from @cinqdanceessentials ! Super pumped for the new year!

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The Backstory

This blog has been around to some degree since 2012. So much has happened since then that trying to link all the blogs to new ones that explain where I am now in my story has become exhausting. Instead, here is a summary of where I am and where I’ve been. (For more details, please feel free to poke around and read posts at your leisure.)

I have been sick since I was 14, with doctors unable to explain why. I did what I could to avoid pain and discomfort, all while trying to live my life. In 2014, I had to have my gallbladder taken out, with no real reason (except for the terrible pain any time I engaged my abdominal muscles.) This added additional dietary struggles since my body hasn’t figured out how to function without it.

In October of 2016, I started noticing that I seemed to be more tired than usual. It was a slow fade, but I began to notice that I wasn’t able to do as much in ballet, so I stopped wearing pointe shoes in class. Then I cut out the extra classes. Before I knew it, I was struggling to keep up at rehearsals, having nausea daily and near fainting spells and dizziness becoming more common as the time went on. By Spring Show 2017, I realized it would be my last. The fade had become so drastic, I could no longer get through rehearsals, and show was a struggle. My heart shattered.

In May 2017, my bloodwork finally showed something abnormal, and I was diagnosed with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.) It didn’t make sense for me to come down with this, as the typical way wasn’t something I was exposed to, as far as I’m aware. Still, blood doesn’t lie. The blood work had to be at a 66 to be considered positive, and mine was at a 470. Essentially, my body is perpetually “fighting off a virus,” leaving me with the same energy as someone hungover, with the flu, trudging through peanut butter.

While this gave me some comfort that finally at least something was showing up, it became infuriating to realize that there is next to no research done on ME/CFS, even though there are double the diagnosis every year than there is for MS. (Check out the documentary “Unrest” on Netflix if you’re curios on more details.)

We still don’t know the cause of all the other things that have made me sick since high school, and I’m back to square one on the medical side of things, leaving me frustrated and pretty hopeless that I’ll get answers. Instead of focusing on grasping at very expensive straws, I’m focusing instead on doing as much as I can, while I can, while also listening to my body as it tells me things I’m not used to.

I had to quit dancing in shows after the 2016-17 season, though I am still able to teach as of writing this, which gives me such great joy. I had to quit my full time job in the Spring of 2018, which has been quite a financial adjustment.

For now, I’m doing what I can to try and do as much as I can, while also not doing too much. Some days I can get through okay, and some days sitting up in bed is a struggle.

Still, I’m beyond grateful for the dance community, the beautiful people I’ve met through it, the encouragement I find in it, and the memories I’ve made since I began dancing in October of 2011.

I don’t know if I’ll get better, it’s possible I can get worse still. Regardless, I’m doing my best to be appreciate what I have, while I have it. I encourage you to do the same.

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