Annie Elainey

The AI Van Gogh style portraits. [Image Description: AI generated images using Annie’s facial features, portraits in the style of Van Gogh show Annie in multiple hues or yellow and orange. 1: wearing on braid, facing straight on, wearing red lipstick a swirly starry night behind her 2: wearing two braids, swirls of green and blue behind her 3: wearing an orange collared shirt and lose wavy hair with a swirly starry night in background 4: shoulders bare, hair loose and to one side of her neck, swirly starry night in background. 5: hair loose and wavy, blue t-shirt, starry sky and trails in background] https://www.instagram.com/p/ClsM02TsUrr/?igshid=NGJjMDIxMWI=

🎵 Feeling 32-ooh-ooh! 🎵 [Image Description: outdoors with palm trees in the background, Annie wears blue sunglasses, a yellow shirt, and a braid on the side, smiling] https://www.instagram.com/p/ChkSLGzOBjC/?igshid=NGJjMDIxMWI=

This is my last appointment with my primary doctor in Miami. I am moving from the house I’ve lived in on and off for the last 21 years in about a week and a half. I got emotional with her, she was the FIRST doctor that listened to me about my concerns about EDS when I was originally on my diagnosis journey. I let her know, when I made the decision to switch my primary doctor, I came into her office with the momentum of someone ready to push and fight after what I had been through for the past few years in and out of offices, and instead of a fight- she met me where I was with kindness, respect, and understanding. She was ready to listen. I am so grateful for her because she really was the crossroads for me. I think if she had betrayed me and harmed me like the others, I might’ve quit searching for answers. But she was there. And she gives me hope that there are still people in the medical field fighting the good fight despite what my past experiences have been. [Image Description: Annie with long black wavy hair and tan skin wears glasses and a black face mask, sitting on an exam table in a doctors office. Annie is wearing black boots, checkered pants, a beige halter top, and blue denim jacket] https://www.instagram.com/p/CZhuatTvEtG/?utm_medium=tumblr

I got my first Pfizer shot!! 
I am so excited to start this process! I’ve had a number of people tell me that they are eligible for vaccines but are concerned about sharing it because people will speculate as to why they were eligible. Y’all… Don’t ask people why they were eligible for a vaccine. As @painandcats_ put it, “Harassing people over why they got vaccinated before so-and-so has real “do you really need that disabled parking spot?” energy.” That is personal information that doesn’t need to be shared with you; whether it’s their own health condition, their profession, or their proximity with a high-risk person. And let’s say they just happen to be at the right place at the right time, like the folks who are at the pharmacy at the end of the day and there are leftover vaccines. That’s okay! We want as many people as possible to get vaccinated; this is a collective effort in order to save lives and get ourselves out of this pandemic. A lot of people are nervous about vaccines but hopefully by sharing that you were vaccinated you make someone feel more at ease about it, that is my hope. Hopefully sharing about being vaccinated gives people hope!! [Image Description: In their bedroom, Annie smiles and rolls up her sleeve to reveal a blue Band-Aid.]
https://www.instagram.com/p/CMfrM0cjHk9/?igshid=10ptuittx5hae

It’s #RareDiseaseDay. Sometimes I don’t know whether I should post on this day because technically #EhlersDanlosSyndrome is not a “rare” disease, it is just rarely diagnosed, however that second part is pretty important because the healthcare system often doesn’t acknowledge the damage this disease can do or often times I meet doctors who have no idea what it even is and when so many people have this condition and yet our healthcare systems can offer almost no support and on top of that gaslights patients into thinking that their pain and illness is all in their heads... then maybe EDS still has a spot at the table on rare disease day. I talk about #EDS so much on my social platforms in hopes of creating visibility for this condition and the various ways it can present and the various ways it can impact one’s life. I wanna thank you all for your support, for sharing my posts to increase visibility, and for sharing your stories online as well, I truly feel that doing so can lead to life altering changes, social awareness, and justice. [Image Description: a selfie of Annie in the sunshine against a tan colored wall, Annie has black hair in two braids and wears a zebra print mask and a black top] https://www.instagram.com/p/CL3RDZRjYd8/?igshid=1h8vmeznmojdr

Out of the house for a medical appointment yesterday🤘#ootd #EDS [image description: Annie standing with their cane, wearing two braids, a black face mask, blue and green plaid overalls with a black sheer leopard print button up shirt open and on top. The background is altered to appear like a galactic wall.] https://www.instagram.com/p/CKZdgGjD6is/?igshid=1n7by5yrg0bfu

Happy New Year from my bedroom! First I wanna say, I want you to see this aesthetic and remember that the person that looks like this needed someone’s help at dinner to cut their food because their hands have trouble working sometimes (ok a lot of the time), this person messed up their jaw and triggered facial and head pain from food that was hard to chew, this person got tachycardia from cleaning and myalgia from just a few minutes of dancing. This is a #DisabledAesthetic, this is what disabled looks like 😎♿️ Now that that’s out of the way, it’s 1:11am and I am wide awake and ready to do NYE rituals! Gonna journal, dance until I sweat like the old club days or until my legs give out, whichever comes first, probably the latter 😆, and then wash 2020 off in the tub. Do you do anything special NYE or New Years Day?? [Image Description: Annie with long black wavy hair, smiling standing with their cane, wearing a black choker necklace, black faux snakeskin halter top, blazer and black pants. The background is her closet curtains altered to appear as a wallpaper of fireworks.] https://www.instagram.com/p/CJffO4jjitK/?igshid=fkqi11zcvgp3

This year felt like a psychological marathon! So much happened and is ongoing as I write; it’s hard to feel like the year is even ending because there is no real feeling of “Now I get to catch my breath and shut the door.” it’s a marathon, you get a cup of water as you pass by the hand that holds it out for you and you keep going. Today is just that cup of water as I keep moving forward. And in the midst of it all, it is important to me to find sparks of light in the darkness. My mental health is a tight rope walk but therapy, gratitude, meditation, and tapping into the things that inspire me and being me joy have been so helpful to me this year. I’ll be spending the next couple of days reflecting on this. [Image Description: 9 photos in a 3 by 3 grid. From left to right and top to bottom, Annie in her wheelchair at a conference, Annie in her wheelchair with a lit up “the future is accessible” sign at a dimly lit bar, Annie with her cane edited to look like Loki’s scepter, Annie in her wheelchair with a rainbow painted on her cheek and rainbow decorations, Annie in a rainbow skirt and wheelchair in her backyard, Annie as Wall-E and Eve in her powerchair, Annie as Lexa from The 100 in her powerchair, Annie in a red dress with her cane, Annie in front of a Christmas tree wearing a suit and standing with her cane] https://www.instagram.com/p/CJeSlrlDNNR/?igshid=1nz4tl33bopwu

CN: discussion of NYE weight loss pressure, body dysmorphia/ED, and weight changes in the past year Somehow the topic of weight came up around me recently and my brain spiraled a little. I have body dysmorphia and a history of disordered eating so I do not weigh myself on a scale or count anything (calories, hours of eating, etc) but I have felt a bit of that “too big for my skin” feeling when I look in the mirror; this “is that really my face right now?” feeling that often comes with body dysmorphia. And with a quickness a different voice came up inside of me, similar to the voice that appeared about a decade ago when I initially recovered, “You better hold onto your tummy and comfort that inner child!” What would you say to yourself if you were your own child? What would you say to yourself if you viewed everything you went through from an outside lens and you loved yourself unconditionally? “Baby, you are here. You survived every day to get here. You are here and you are alive and that is all you need to do. This body is holding you inside and that is enough. This body held you through all the trauma and grief, hold your body, hold yourself in return. I’m so proud of you and I am grateful to have you here with me.” Angels, please don’t let anyone or anything pressure you into anything but just existing right now. Not just because we’re done with 2020 and it was such a difficult year all around but any year moving forward. Just exist and be here with us, that’s enough. You truly are so so loved! I am grateful for you! [image description: an altered background appears as an impressionist painting of water and lily pads, Annie stands leaning against a wall wearing a black camisole and underwear, with long black wavy hair, holding her round belly and smiling]
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Thanks to @plazadeaubrey for the Noche Buena outfit inspo this year. From our mixed “shelter-in-placed” and “essential worker” family to yours. ¡Feliz Navidad! Wishing you a peaceful season and a gentler 2021. May the future treat us with care and tenderness and may we move through pain and adversity with grace and kindness. [Image Description: Annie stands with their cane in a living room in front of a Christmas tree wearing black high waisted pants, a shiny black top, and black blazer] (at Miami, Florida) https://www.instagram.com/p/CJNVsZGj33l/?igshid=1vuewiusqw7ur

Ahh! Y’all know how much I love disability fashion! I love these Chronically Chill shirts from @NeverLessApparel, almost anything with fun skull stuff is my aesthetic PLUS disability culture? It’s a win for chronically ill folks! They also have an “Anxiety” shirt with skeleton aesthetic, one with Death lurking over a tombstone that reads, “RIP all my spoons”, and No Focus Club; all with this dark aesthetic I like, but they also have a few bright, fun, and positive shirts as well relating to disability and LGBT! You also can find GORGEOUS stickers (some holographic ones) and decals in their shop as well. Go check them out! Never Less Apparel is a small business and sustainable brand,owned by a disabled & non-disabled LGBTQ+ couple, and they are partnering with people in the chronically ill and disabled communities to help fundraise for medical-related expenses (disability aids, medication costs, surgeries, etc)." #AD [Image Description: Photo 1: with an altered background of a blue sky and tree branches, Annie wears a sparkly black mask and a black shirt that reads, “Chronically Chill” with an image of palm trees on the upper left chest. Photo 2: with the same background, the same shirt from behind, reads “Chronically Chill” and an illustration of a skeleton in a hammock in a tropical environment] https://www.instagram.com/p/CIy7tCNjEQ8/?igshid=y5x39k9di26d

Happy International Day of Disability! Here are some things to keep in mind: -“Disabled” and “Disability” are not bad words. -A disability is any physical or mental condition that limits a person’s movements, senses, or activities. -Disability doesn’t have a “look”. Disabilities won’t always be apparent to you, that doesn’t make it less of a disability. -Disabilities can be fluid, not the complete absence of a certain ability but different accessibility needs and capabilities. -Professional diagnosis is a PRIVILEGE. Treatment is a privilege. Economic privilege, location/ability to travel, access to doctors that are well informed and without harmful biases (sexism, racism, ableism, fatmisia, etc). Self-diagnosis is often needed for SURVIVAL. -Our accessibility rights need more enforcement and accessibility needs to be everyone’s PRIORITY, not an afterthought. -We don’t have marriage equality until we ALL have marriage equality and that includes disabled people! -We ALL have ableism that we need to unlearn. -Disability rights, awareness, equality/equity still have a long way to go! Recently I was struck with an emotional moment where I cried with gratitude for my life, for being disabled and being part of this community. I love you all so much, I appreciate and am so thankful for you. And though the world seems to constantly throw us under the bus, know that we deserve better, you are worth it!! You are loved!! Chair info: bit.ly/AnnieWHILL [Image Description: Annie stands in front of a floral bush wearing a T-shirt that reads “Ambulatory Wheelchair Users Exist”with an image that depicts a wheelchair user standing up to walk. Next to them is their Whill model CI power chair with a gold side plate.] #DisabilityDay #InternationalDayofDisability #IDPWD #IDDP https://www.instagram.com/p/CIW0YbJDMZY/?igshid=pbtggce519qi

Happy Halloween from the gardener and the au pair of #BlyManor! [Image Description: Two Annies, one dress in overalls, a plaid shirt and brown jacket, and the other dressed and a light pink shirt, denim jacket, and jeans. The background is edited to look like a woodsy path] #TheHauntingofBlyManor #DaniXJamie https://www.instagram.com/p/CHBp9CKDkJk/?igshid=1ton8pt3bsr4p

"Representative Yoho put his finger in my face, he called me disgusting, he called me crazy, he called me out of my mind, he called me dangerous. Representative Yoho called me, and I quote: "A fucking bitch". I am here because I have to show my parents that I am their daughter and that they did not raise me to accept abuse from men." - #AOC (@aoc) ALSO PLEASE VOTE!!!! 🔵 [Image Description: Annie with long straight black hair, red lipstick, and a red blazer. Edited into the background are campaign posters for Alexandria Ocasio-Cortez] https://www.instagram.com/p/CG-71JHDQMI/?igshid=1wrq88by0nb1x

Call me, beep me, if you wanna reach me! 📱 [Image Description: an altered image of two Annie's, one dressed as Shego in leggings, a lime green top, and big wavy hair, and the other Annie dressed as Kim Possible wearing a long sleeve black mock neck top, and army green pants. Both Annie's stand with a cane in front of a teal background] #halloween #kimpossible #disney #disneychannel #wlw #shego #cane https://www.instagram.com/p/CG8XH9DDdHq/?igshid=12z30ua633ki9

💃🏻The Red Dress Dancing Emoji 💃🏻 [Image Description: on a beige background, Annie stands with their cane, they have long wavy black hair, and a red flowy dress swished upward mid dance] #halloween #emoji #emojicostume #reddress #cane #babeswithmobilityaids https://www.instagram.com/p/CG5vli4j18E/?igshid=1q0luvvcxkh43