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Sep 13, 2020

In Love with a Couch

So, I got a pink couch and I love it so much that I had to make a post about it. Here’s the story – At the beginning…

• just a little cutie for the gram 🍊 #bigora

• just a little cutie for the gram 🍊

#bigorange #velvetorange #littlerock #littlerockeats #eatlocal #drinklocal #drinkstagram #rocktownvodka #visitinghome #littlerockarkansas #arkansas #arkansasmade

･ next week marks a dozen (12!!) years 🤯😳

･ next week marks a dozen (12!!) years 🤯😳 since I made the decision that completely changed my life 🥹 the #1 question I get is “do you regret it?” and the answer is always a quick “no.” At the time (2010) yes, I repeatedly said, “I wish I had done this sooner,” but had I done so, the experience would’ve been totally different especially when you factor in the internet and social media – in ‘07 or ‘08 (when I wish I had started) I probably would’ve been chatting about it on MySpace with the various “official @mileycyrus backup account” I was friends with 💀 unfortunately for @myspacetom, @zuck came along 👤 and my favorite space on the world wide web became “Chandler in Baltimore” 💜

sharing my experience through #limblengthening, living with #achondroplasia, and my overall life, in general, has been the most amazing and terrifying thing I have ever done. It has connected me with amazing people, given me wonderful opportunities, started my career path, and introduced me to the world of #patientadvocacy…and with that being said, I’m SO excited to be attending the @globalgenes Rare Patient Advocacy Summit in September as a social media ambassador for the event! 👩🏼‍💻 this is my first time attending in person and I’m beyond thrilled! 🤩

come join me and others – from individuals to #healthcare professionals in the #raredisease community for a chance to connect and attend educational sessions 📚 I’m most looking forward to finally meeting so many advocates from other patient communities that I have been connected with on socials for so long in person for the first time 🥰

more information about the event, registration, and #GlobalGenes is available through my link in bio 🧬 make sure to follow along as I share more details leading up to the event 🤗

fun fact: the jacket I’m wearing was my brother’s from when he was around 12 in the mid-90s when we initially started seeking information on limb lengthening 🦋

#patientadvocate #achondroplasiaresearch #dwarfism #dwarfismawareness #skeletaldysplasia #careaboutrare #pas2022 #rarechampions #championsinrare #championsofhope #rarecommunity #patientcommunity #healthcareprofessional #community #socialmedia

• me whenever there’s a new trend and I obnoxi

• me whenever there’s a new trend and I obnoxiously think of ways I can relate it to limb lengthening: girl, don’t do it. it’s not worth it
me: I’m not going to do it, girl. I’m just thinking about it…I’m not going to do it
* 5 mins later *
me: …I did it 😏

#limblengthening #itsathing #armlengthening #limbalignment #heightdifference #limblengtheningsurgery #orthopedic #orthopedicsurgery #limbdifference #limbdifferenceawareness #achondroplasia #dwarfism #skeletaldysplasia

• another mirror selfie and life update that no

• another mirror selfie and life update that no one asked for ✌🏻😙 this week, I took my 100th @corepoweryoga class 🧡 today was 103!!! I have definitely seen an improvement in my core & overall muscle strength + definition – especially in my arms 💪🏻 & glutes 🍑 which if you’ve been following for a while, you know my glutes have been a pain in the butt [ pun intended ] because of #coxavara/#hipdysplasia (re: #troCHANter saga ‘15-‘16)

I’m still actively taking @pure_barre (recently hit 750‼️) but have committed to myself to take at least 15 CPY classes a month 🥵 this year alone I have taken a total of 93 classes – I barely started my journey in ‘21, obviously 😅 but I’m loving it and I especially LOVE sweating (as in drenched) 🫠 because when I sweat, it just makes me feel like whatever I’m doing, I’m doing it right ☺️ above all else, it has been a tremendous stress reliever for me – which this may not be the case for everyone, but it has helped me a lot mentally and physically the past six months 💗…and of course I love any excuse to buy new bras and leggings 😅

if you have a CPY in your area, I highly rec!!! Especially if you have #achondroplasia or any form of #dwarfism/#skeletaldysplasia. Like #purebarre, the exercises, flows, and movements are easy to modify and I feel it helps my core + spine sooo much which is SO important ❤️

and yes, my mat is held together by a ponytail holder which is more support than the government cares to give anyone who isn’t a heterosexual white male 🤷🏼‍♀️ so other than that, there’s no more life update other than please go vote for those who believe individuals should have the rights to their own reproductive systems and have CHOICES for how they choose to live their lives and do what they want with their bodies because seriously what the f is going on? 😶

#achondroplasiaawareness #dwarfismawareness #limblengthening #ICLL #patientadvocate #patientadvocacy #yogasculpt #corepoweryoga #powertogther #powerup #sweatsesh #postyogaglow #liveyourpower #lifttoneburn #inmyalo #caliafitness #thesweatlife #fuckthepatriarchy

• 5, 6, 7, 8...I have *bean* waiting to *reflect

• 5, 6, 7, 8...I have *bean* waiting to *reflect* on this past weekend & now that I'm literally in the ☁️ clouds ☁️ and not in front of one, I can – since 2019, the @chandlerproject has been hosting the annual @achondroplasiaresearch conference & this weekend marked the fourth one 🍀 in ‘19, I honestly wasn’t sure if this would be a continuous thing or not, but given the response + constant "when's the next one?!" 🥺 it's safe to say this is forever — not only for #achondroplasia, but for other forms of #skeletaldysplasia, too 💜

thank you, thank you, THANK YOU to @childrensnational, #InnoSkel, @murdoch_childrens, @nemours, @davidsfeldman, @paleyinstitute, @orthodocphil, @limblengthmd/@lifebridgehealth, @hspecialsurgery, @uwmadison/@waismancenter, @pfizerinc, #QEDtherapeutics, #AscendisPharma, and @biomarinofficial for not only your participation, but your compassion and dedication to this particular patient population — what you’re doing means more to parents than you will ever know 🥰

and lastly, in the midst of all the chananigans, I almost missed the notice letting me know I’ve been nominated for @globalgenes RARE Champions of Hope Award among 190 other nominees! 😭 I just…no words — whoever nominated me, you have no idea how much this means to me 🥹 all I can comprehend to say right now is thank you 🙏🏻

oh, I love my life and all. THAT. jaaaZzZz 🤗

#achondroplasiaresearch #chicago #cloudgate #intercontinentallife #interconchicago #patientadvocacy #patientadvocate #limblengthening #careaboutrare #COH2022 #cohnominees #rarechampions #careaboutrare #championsinrare

• on Wednesdays, we tuck to 750 - especially dur

• on Wednesdays, we tuck to 750 - especially during #womenshealthweek 💜 since summer 2018, @pure_barre has been the best thing for me both mentally and physically. 💪🏻

Having #achondroplasia affects your whole body, not just the arms and legs. At 16, my legs were beginning to affect me so much that it was just a matter of time before my whole body followed in suit. ❤️‍🩹

After going through #limblengthening and two hip surgeries (trochanter transfers), I began to take advantage of my body because my naive self thought the surgeries and #physicaltherapy were enough until one day I told myself that I needed to get my ish together and take care of the body that I, my doctor, and physical therapists had put so much time and effort into. Treatment for limb lengthening is only about 6 months to a year depending on how you look at it, but it’s up to YOU to continue to maintain those goals you set for yourself and the rest of your life. ✨

Since starting #PureBarre, it has made me not take for granted the body I worked so hard for and more. Going into the studio to lift, tone, and burn with the other members is my favorite stress reliever and makes my mind and body happy. 🥰

#nwhw #womenshealthmonth #mentalhealth #mentalhealthawareness #mentalhealthmatters #mentalhealthawarenessmonth #physicalhealth #powerofshe #purebarrebaltimore #purebarrestrong #purejoy #purehappiness #lifttoneburn #dwarfism #dwarfismawareness #skeletaldysplasia #patientadvocate #patientadvocacy

･ 9 years ago today, my momma spent 11+ hours in

･ 9 years ago today, my momma spent 11+ hours in a waiting room while I was undergoing my second leg lengthening – the longest, hardest, and most unforgettable surgery I’ve ever had. She’s been with me through it all – every single step forward and back, every achievement and fail. No matter what, she’s always been by my side. 💞

I originally had this whole spiel or as my mom calls it, a “chant” (Chan rant) or a “chantrum” ready to go, but decided it’s for another day… 😅

But I do want to say this…I have never ONCE doubted my mom’s love for me and I have never once felt in anyway disconnected from her despite my diagnosis of #achondroplasia or how I choose to identify. I don’t see my mom and I as different from one another. I see her as I’ve always seen her which is my mom and my best friend. My having achondroplasia doesn’t disconnect us in anyway because my diagnosis is something we have dealt with together since day one. 👩🏼‍🍼

I have the condition and carry the gene, but we have BOTH lived and dealt with the consequences of the condition and are affected by it daily – always have & always will. But in actuality, my mom was affected by it long before I was. When a child is born with a rare disease or life threatening condition, it’s the mom (parents) who deal with it first…before their child is one, they have already read every single medical article and met with any and all experts they can. And never once do they “think” they’re doing it out of love…they KNOW damn well they’re doing it out of love despite what some may think – see: @bbc ‘Ellie Simmonds: #AWorldWithoutDwarfism’ at time mark 49:03-49:20 🙃

to all the mommas + maternal / female figures who have become the experts on your child’s condition, who have become strong advocates and who have had to make life changing decisions without much time to process your thoughts, and while doing it all out of LOVE — happy #mothersday to you! 💐

…okay, so obviously I did end up going on my little chantrum for a little bit 😅 but I know I make my momma proud and that’s all that matters and as @taylorswift so eloquently puts it, “and here’s to my mahhmuhh, had to listen dRaMaH” 🥵 #tiwwchnt

© Chandler Crews

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