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Oct 4, 2020

MEGA TV, Buena Veda

MEGA TV – Buena Vida

Filed Under: Achondroplasia, Media

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My Not-So-Short Life: Why Limb Lengthening Surgery Was Right for Me

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Growth Awareness Day

hi, I’m chandler!

consumer of too much diet soda / human to beau / *tap my face to get to know me more*

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• dumptember 🚛 aka september photo dump 🎞️ september ’22, I’ll remember you ~

the month started by recovering (still am) from the announcement of #TS10 aka #TSmidnighTS and @taylorswift making me go bankrupt 🥲 (got that lavender vinyl as if my life depended on it 💜) and currently gatekeeping #vigilanteshit as my track, but we’ll see come 10/21 🌌

@notacorgijustachi got to experience the west coast with me as I headed to my first @globalgenes patient advocacy summit where I was nominated for the rare champion in advocacy (individual) award alongside 56 other nominees! the best part was seeing familiar faces and meeting internet friends in person 💞 FYI – “don’t befriend strangers on the internet” doesn’t apply to patient advocates 😝 I’m looking so forward to next year + other events and learning more about how to be a better advocate and organization 🦋 if you’re a patient advocate or a nonprofit, check out Global Genes if you haven’t already! 🧬

my time at #GGSummit22 was cut short due to an appointment I had. for the first time in a long time, I’m dealing with something completely unrelated to orthopedics – it actually threw me off that it wasn’t Dr. Standard walking through the door at the appointment 😅 and although I wish I could’ve stayed for the remainder of the summit, it reminded me that at the end of the day, taking care of yourself and health comes before patient advocacy 💜 and for those interested, I’m planning for a more detailed post about my overall experience at the summit – just need a min to get my ish together 🤗

finally – sweatshirts, leggings, and @ugg season is back 🍂 I got two new pairs of boots for this season that I’ll have to share because #lifeafterlengthening just hits differently in the fall and winter seasons…IYKYK 😉👢

will be sharing more all month long with it being #dwarfismawareness month, #midnightsmayhem, and so on – but for now…IT’S FINALLY FALL, Y’ALL! 🎃👻🌙☕️🤎☔️

#achondroplasia #dwarfism #skeletaldysplasia #limblengthening #patientadvocate #patientadvocacy #DAM2022 #DAM22 #travel #globalgenes #bekind #health #takecare #sweaterweather #spookyseason #feelslikeugg #uggseason #boots #taylornation #october

• spent the weekend doing end of summer cleaning

• spent the weekend doing end of summer cleaning + organizing – still have much to do, but was able to still find the time yesterday to get out with beau. while out, we ran into some pretty friends 🦋🐝🌸 (honestly, beau didn’t care at all) but it was nice to take a minute and just watch them explore and soak in the beautiful sunday summer evening while thinking about all that there is to come in september and fall in terms of adventures, health, work and so on 🧡

i’m beyond ready for august to slip away into a moment in time to start fresh in september…that was, of course, all before @taylorswift went and chaotically announced midnights 🕰

either way – no matter the chaos we live in, here’s your reminder to take time and go on a walk, blast taylor swift, and to stop and just watch the butterflies & bees care for this pretty place 🌎

#endofsummer #summerevening #summer #sunday #goldenhour #august #butterfly #butterflies #monarchbutterfly #nature #garden #flowers #baltimore #maryland #prettyplaces

• your new life is going to cost you your old on

• your new life is going to cost you your old one…all you’re going to lose is what was built for a person you no longer are 🦋

yesterday I came across this passage by @briannawiest while thinking about what I was doing 12 years ago at that moment to prepare for what was happening at this moment 12 years ago today – not even in the OR yet (and wouldn’t be for several more hours)

stumbling across the passage was one of those “wow, I really needed that” moments. I even said to myself, “damn, where was this when I needed it 12 years ago?”

at 16, I didn’t think I was getting a “new life” just new legs – but I was wrong, so wrong (it’s one of the very few instances in my life that I appreciate and admit that I was proven wrong)

now, not a day goes by where I think about what could’ve been. in my mind, knocking down the walls and demolishing the bricks of what some may feel was supposed to be my life vs the life I built on my own with the help and guidance of those who stuck through it with me and who I met on the other side — I wouldn’t change it for the world.

I knew openly sharing my experience was going to cost my comfort zone and at times my sense of direction. it’s a price I wanted to pay. I know there are people who don’t like me and at times, I can be hard to understand, but none of that matters.

what matters to me is knowing that I gained more than just height.
I gained self-awareness.
I gained a body & voice that I wanted to be seen & heard.
the ones with me today – whether there from the beginning, or later on, are the ones I know who love me and I know who understand me and see me.

I’ve dealt with a lot these past 12 years. I may have lost the life that was built for the person I was then, but I don’t miss it at all.

here’s to a dozen years of standing corrected. standing happy. standing straight. standing tall. and standing up.

truly, thank you to everyone who has stood with me through it all – you don’t always get to see what happens offline and your comments + support always mean so much - thank you 🥰

#achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #patientadvocate #patientadvocacy #limblengthening #LEGiversary #standbyme

• in honor of national #patientadvocacyday, here

• in honor of national #patientadvocacyday, here’s a #FBF recapping my recent trip to San Francisco 🌁

last week, the @chandlerproject – along with several other patient advocacy + community organizations, met with #QEDtx to discuss current events and what the future looks like for #achondroplasia. It was a much-needed and powerful conversation on what the community as a whole wants and needs that I feel is leading us in the right direction at this time 💚

next week marks 12 years since my patient advocacy journey began and at 17 years old, there was so much I didn’t know, but I knew deep down there was a certain radiance to being young, naive, and sharing things on the internet you knew others wanted to shoot you down for – and in some sort of magical @taylorswift universe fever of a dream, I like to think that myself today got to meet my 17-year-old self and gave her a map that led her to where she is today…to which I say, “I’m happy for her” 🥹 (comparing my life to Taylor Swift lyrics…again, I know)

…or maybe all along there was some sort of invisible string tying me to where I am today 🧵while going through my first lengthening, Dr. Jeffrey Young of @stanfordchildrens was performing a fellowship at @limblengthmd and was part of my care team…a few years after his fellowship, he and Carl (on my left) were colleagues together @stanford.healthcare ❤️‍🩹 from being a patient on the operating table to being an advocate sitting across the table with people who have the same drive and passion as yourself just feels full circle 🥰 but overall, the best part of the meeting??? running into my favs aka the Bray’s 🧡🌻

to my fellow patient advocates – I’m sending you cheers, fist bumps, high-fives, hugs, cookies, ice cream, and more this #nationalpatientadvocacyday 🎉 your advocacy, hard work, and dedication to your community don’t go unnoticed! I hope to see and meet (in person) a lot of you next month at #GGSummit22! 🧬

#patientadvocate #advocacy #achondroplasiaawareness #achondroplasiaresearch #dwarfism #dwarfismawareness #skeletaldysplasia #sanfrancisco #california #taylornation #limblengthening #globalgenes #flashbackfriday #foreverataylorswiftstanaccount

• 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

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