15/06/2024
This. This right here is why I keep going.
The joy and sheer pride I get from watching performers like light up the stage in my art is like no other. Even with all of the sleepless nights, the worrying, the day to day stress that comes with being a small business owner and having a full time job - this makes it all worth it.
Yesterday I was talking to a friend very much in the PANS/PANDAS space, and she said that for me to be doing what Iām doing, as well as Iām doing it, is nothing short of a miracle. That patients with untreated AE oftentimes donāt make it past 25, and if they do, are hardly functional at all. And if thatās you, just know that I see you. I donāt say any of this to disparage anyone who has my disease who is confined to their home, being cared for, or taking time away from work in order to heal themselves. If I could do that, I would, and if Iām being honest, Iām always one bad infection or relapse away from it. So this isnāt to shame anyone in that position - itās just to take a moment to reflect on the fact that itās a miracle Iām alive at all, let alone able to even make one sparkly outfit for such a cool person. And work full time in social media. And be engaged to an amazing man. And have so many amazing friends.
I truly want that for every single person struggling with AE, but know that even though I look āfunctionalā on paper, itās only due to massive amounts of medical and pharmaceutical intervention while I wait for my infusions.
As I push through my illness and get steadily closer to my first IV treatment, these little moments where I get to see someone enjoying the spot of sparkle my enflamed brain made for them means everything šš«¶š»š§