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Brielle Sullivan

@brielle_angeline

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“And I suddenly realized that every single thing in my life is fleeting, and only God is eternal.”

CRPS Journey: @brielle_crps

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if you’re going to spend 7 months in Arkansas, do it surrounded by friends <3

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An Arkansas Safari 🐴🐶🐐🐑🐓
Can’t be making any promises that the only animals I’ll be bringing back home will be jellycats…

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I’M OFFICIALLY FEEDING TUBE FREE BABY!!! 🥹🤍

I can’t even begin to express how happy I am to share this update! My stomach still has a long way to go, but we’re feeling confident that removing the tube is the right next step in giving my body the best opportunity to continue healing.

Unfortunately, my feeding tubes have been particularly prone to bacterial and mold growth (and mold can cause a heck of a lot of problems). My body had started rejecting my previous tube before it eventually fell out, which we believe was related to mold growth. This most recent tube started developing mold just 10 days after placement, and it has been an ongoing issue for the past five months. Getting it out became an increasingly important part of moving forward!

My list of safe foods is still pretty limited, and we’re slowly working on introducing new foods and liquids (a very specific smoothie is currently the only liquid my stomach will cooperate with 😂). BUT my weight has remained stable throughout the past few months of tapering feeds, including FOUR full weeks without formula!! That is a HUGE step in the right direction!

There is still so much healing ahead and so much I’m praying for, but today I’m just really, really happy to be celebrating this milestone! 🥹🤍

#NoLongerGettingCaughtOnDoorknobs

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My second birthday celebrated in Arkansas and I truly think nothing will top the last two🫶🏻
See you never twenTEA eight ☕️🍰🍓

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You know the tea party was a hit when your pinky is sore after 🫖

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I won’t lie, the last few weeks have been some of the hardest I’ve had in a long time. Old symptoms, new symptoms, two ambulance calls, hospital trips, feeling the most scared I have in my body since this all started nearly five years ago, and some big changes that have completely exhausted me physically, emotionally and mentally.

Yet, even in those darkest, most scariest of hours, I have been surrounded by the most incredible, supportive, loving people who I still don’t believe are actually real. These people are real life angels. The staff at Spero, the other patients and caregivers are the people who have gotten me through. There isn’t an hour that passes by where someone doesn’t make me smile or laugh. Where a few simple words of encouragement and love can change your whole day. Where a hug, squeeze of the hand or an ‘I love you’ reminds you that there really are people who care. I’ve spent my whole life believing I don’t deserve good things and that I deserve to suffer because I’m a bad person, but these people do everything they can, every day, for me, to remind me that those thoughts aren’t true.

I may still be working on a lot of things, but there are two things I promise myself every morning I wake up; I will not waste this opportunity of healing, and I will give it my all every day, no matter what that may look like. I’m stubborn, and I’m not giving in just yet.

My body is complicated and has a lot of healing still to do, but I am continuing to trust the process and believe that each day is a day closer to the day I can graduate. The day I WILL graduate from Spero and reclaim my life back. Healed. Ready to hopefully give back to the world what this incredible place has to me; hope, understanding, support, wisdom and love.

‘For a star to be born, there is one thing that must happen: a gaseous nebula must collapse.
So collapse.
Crumble.
This is not your destruction.
This is your birth’ 🌟

💛🦋🩷🌻

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Summer in FULL color🌈☀️

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A long overdue update (screenshots are in the post)🧡🎗️

We’re still untangling the necklace, sometimes painfully slowly, one tiny knot at a time. But when I look back, I can see just how many knots have already come undone.

Still praying. Still fighting. Still celebrating the wins. Still trusting the Lord with the timeline. And still believing for the suddenly!

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Two rodeos in the space of a month!? Someone hand me my American residency 🐎🇺🇸

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Proof I left GA for a minute 🚗

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Spring break visit!

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Rare Disease Day 🤍

If you had told 12-year-old me, who proudly said she’d “never been to the hospital except when I was born,” that hospitals and doctors offices would one day feel like a second home, I wouldn’t have believed you.

At 13, it started with “just stomach pain.”
At 15, it was “just a sprained ankle.”

Except it wasn’t.

Over the next few years my body became a mystery I couldn’t solve. Symptoms doctors called “impossible.” Pain that moved and morphed and made no sense.

I was diagnosed with CRPS…Complex Regional Pain Syndrome among a host of other diagnoses. I remember my doctor walking in and saying, “I have a really crappy diagnosis for you.” He wasn’t wrong.

The years that have followed have been filled with appointments, treatments, medications, and a version of survival that I don’t fully remember because sometimes dissociation is the only way through something that big.

For as long as I could manage I kept performing. I kept working. I kept smiling. I kept saying “I’m fine.” I stood on one leg to avoid weight on the other. I lived on pain meds. I missed out on more than I let people see. I pushed through my life as it was until I couldn’t anymore.

Choosing to pursue intensive treatment has been terrifying but it has felt like my last shot. There are no other options. But I will keep fighting till it’s over.

Healing has not been linear. It has not been quick. It has not been easy.

Rare Disease Day isn’t just about statistics. It’s about the people living in bodies that don’t follow the rules. It’s about the ones who look “fine” but fight battles you can’t see. It’s about resilience, advocacy, and hope.

If you’re living with something rare; I see you. If you love someone who is; keep showing up. And if you’re healthy, don’t take that for granted.

Rare doesn’t mean invisible. 🤍

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