Journal 2014-2017. I'm an artivist/advocate, music artist, writer, mom, autist, fighting a rare/complex genetic condition (Ehlers-Danlos) on a mission to live. This is a journal of my reflections on experiences and/or discussion topics, for the purpose of social activism, self-expression/advocacy and increasing awareness. I consider myself moderate/independent, neither far left nor far right. You may not agree or understand. That's fine. Please be respectful. Enjoy.
Tuesday, July 11, 2017
I will never stop dreaming
Below. A pic of me at the #park with my kid #theotherday. I'm #dressedup and wearing my #pumps. I'm #outinthesun amongst the #flowers. I am #grateful. I may not be able to go camping yet, or to big loud concerts in a mosh pit, or ride scary rides at the midway, or go on big trips on planes(unless its for medical) but every little thing i get to do is an #adventure for me. At least I'm not totally housebound and bedridden and super weak like I was before. Like some of my #zebra friends are. Due especially to #medicalnegligence Near dead i was. Drs barely helped so i took matters into my own hands. I survived it. I managed to get myself at least partly better, tho it was scary and traumatic, and i still fight to manage this illness daily and I'm still #lifelimited. I could possibly fall back and sometimes i do a bit, into flares, but i can eventually get up again. Many of my body systems, including pancreas, liver, neuro, cardiac, are damaged, messed up. But I managed to turn back the clock a fair bit, so I can #stealjoys more, and do my #bucketlistdream things.. I am gradually working on reaching my bucket list dream. I will be the queen 👑 of my dreams somehow, someway. One dream is get out my music, another is to, in my own way, make an impact so people like me, zebras, autists, get treated better and get the help they need so they dont end up damaged and suffering, and more. People who don't know my story and don't know what it's like to be fighting a major illness may see me as somehow indulgent and/or conceited in what i do. They're rude and disrespectful because they're #ignorant. I'm just trying to enjoy the hell out of whatever out of life I can get. I will never stop trying. I will never stop dreaming. Because I do, after all these years, finally love wnd respect myself for real. enough to know i deserve happiness however i can get it. I deserve joy. I give out love to others and causes i care for but i can believe i deserve it too. I don't need to keep being a "wounded healer" .. lets rid of the first word there! I don't care who is threatened by my light, offended by my self assuredness, by my journey to love myself for who I am and play as I never could before, even as a child/teen. I deserve to be like this for my last phase of life. For my last fight for life.I am a #survivor and I am going to #thrive - and be DreamerQueen - whether you like it or not. "I don't care what they're going to say. Let the storm rage on..." - (well, u know where that's from)