Unsteadyandready

Unsteadyandready Hey Erin here Diagnosed with ALS at 23
(13)

Fun pics
09/08/2026

Fun pics

I’m letting all my ALS insecurities show. Feeding port, bony back, muscle-less arms and shoulders. ALS is relentless an...
09/06/2026

I’m letting all my ALS insecurities show. Feeding port, bony back, muscle-less arms and shoulders.

ALS is relentless and it keeps changing my body in ways I just can’t keep up with..

But this weekend, when my mom asked me if I wanted to wear a T-shirt down to the beach, I shook my head no.

Something about being surrounded by 40 young incredible badass bi***es all going through ALS together, I felt safe enough to stop hiding.

Hey I’m Erin. I’m more than my disease. Thank you for following me and giving me a platform to try and help.

09/04/2026

You are in your twenties and you are told you have 3-5 years to live. You feel really isolated…. Then you find out you are not the only one. F*** ALS

Celebrating ourselves and each other. If you know, you know. ❤️

Scenes from the HAS retreat. Dayumm that was fun

***es

08/28/2026

What kind of weather situation happened to cancel this flight?? Traveling from CA to Boston for the HerALSStory Annual retreat. All I know was that we were 15 minutes away from boarding and boom cancelled.

Ok.. this isn’t what’s going to destroy me but…,What a pain! Because of my ALS it took a MOUNTAIN of effort from my Mom to get to the airport this AM. Feeling exhausted and defeated because we lost our first nights room deposit in Boston, and now we can’t get another ride to the airport tomorrow at 3am to catch the next flight they booked us on. So my mom will drive the van and park at the airport for a week.

That’s the ugly. Here is the good.

👍🏼 My mom just happened to be talking to the gate agent about my chair when she as notified by text the flight was cancelled. So she was first in line to rebook (and that line was huge)

👍🏼 when we arrived home our friend Denise sent us a DoorDash gift card so we could eat dinner without stress. If you don’t know Denise, her husband Darin Nakakihara was my buddy who passed from ALS this year 💔.

👍🏼my moms beau was able to take us to the airport this am (hour drive) and then luckily come right back for us an hour later to bring us home.

Currently waiting for our lasagne and chocolate cake to be delivered and then it’s lights out because I have to wake up at 2:30am for round 2

✈️

08/25/2026

Also currently in my non-movable period. Very exclusive.

45 books read on my kindle acct so far.

I miss the smell of a book so I have my mom crack open books and waft the old book fragrance towards me from time to time.

A random assortment of my existence. All leading up to the HerALS story retreat coming up next weekend. ❤️ ❤️
08/21/2026

A random assortment of my existence.

All leading up to the HerALS story retreat coming up next weekend. ❤️

❤️

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Brea, CA
92821 - 92823

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