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I was born in the 90s and grew up with the ADA. I remember listening to my mom bringing up the ADA and Section 504 when fighting for me. But I was never directly taught what they were.

I grew up in a world where they already existed and took it for granted. Though as a child, I didn't realize that I did.

It wasn't until I was in my late 20's and early 30's that I started to really learn disability history. And that scares me, because that is my history, and on a fine thread it could become our reality again.

To be honest...

I know (and believe) that all disabled peoples' experiences with their own disabilities are valid.

I know (and believe) that all stories deserve to be told.

But--

I still struggle knowing there are disabled people who "Struggle with Disability Pride"

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I'm Free!! It's been 9 days since I was released from the hospital!

So rewind a bit ...

In May I had my supervisor drive me to the hospital from work because my oxygen and heart rate kept getting bad. I was hospitalized for acute lung failure and tachycardia.

To be honest, it had been going on for months. The feeling of suffocation and dizziness had started causing panic attacks that my therapist was helping me work through.

"Why didn't you see your doctors?" Because I had messed up my health insurance. My doctors were aware and we were waiting for SSA to finish processing my request to reinstate my Medicare Part B so I could schedule the needed appointments. But the process was taking forever.

The day I was admitted I was supposed to be going to a local disability conference. Instead I was taken to the ER. After 2 weeks I was medically stable, but my Medicare plan wasn't reinstated yet and we couldn't guarantee I'd have access to the life sustaining equipment I need. The hospital gave me the option to stay until my insurance was fixed and I took it.

They tried to help move things along but unfortunately hit a brick wall. In the end, friends and family convinced me to reach out to politicians for help, and it worked! On day 50 of being in the hospital my Medicare Part B was reinstated! Two days later I was released and have been staying at my grandmother's since.

Now I'm adjusting to my new normal. My oxygen bottles have gotten larger, my liter flow has gone up, and I have some weight to lose to help my lung.

Wish me luck 🤞... 7/21/24

And a HUGE shoutout to my best friends! I wouldn't be able to live wild in the world without them <3

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Two Sides of One Week

Below are two pictures.

The first is from Feb. 20, 2024 while I waited to participate on a disability panel. The second is from Feb. 23, 2024 while I laid on my couch because I was too tired to sit up, and holding my camera in front of my face was a struggle.

I like what the quote in the first image is saying, but I don't I agree with it completely.

Unlike the quote, I do believe that disability reside in the individual person. The elimination of barriers does not make our conditions vanish.

But the elimination of barriers does lower the amount of struggles, frustration, and deteriorating health that we have to deal with. I don't believe that society causes disability, but it does greatly influence how much our disabilities effect our lives. And the quality of life we live.

As for the Government:

Policy makers, and society, want to think that disability is an all or nothing bubble. That we can either live independently like an average person, or we can't survive 5 minutes on our own. That we can either be a working, contributing member of society, or we're a total shut-in.

I'm sure those meeting me at the panel saw a person who gets out regularly, loves socializing, and lives a pretty average life with a mostly average body.

If they had met me a few days later as I laid on my couch, struggling with my oxygen levels, and crying as I wished for the feeling of crumbling muscles to go away, they probably wouldn't have imagined me as someone who works, drives, and enjoys socializing.

Disability isn't all or nothing. Disability is complicated, and its part of life. Disability is an umbrella term that encompasses all the different ways that people's lives are impacted by their conditions, and I don't see that as a negative or positive, it just is. The amount of impact varies person to person, and the amount of assistance a person needs varies as their life requires. Life isn't all or nothing; life is fluid and complicated, and society should be built to recognize that.

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Stardew Valley - Year 4

My Gameplay Style:

I'm not good at following quest lines or progressing through games. I like open world because they allow to me wander around, and that's what I do. I wonder the map, doing random things and collecting items to sell.

Stardew Gameplay:

I've been playing Stardew Valley on and off for over a year. My character is now four years into living on her late grandfather's farm, and not much has been done with it. She's the reclusive weirdo who rarely leaves her tree farm, and except to forage in the wild or rummage through people's trash.

Reclusive, nature, and enough money to keep it going: I'm living my ideal life.

At this point I realize I need to start progressing through the game. I've learned there's other areas of the map, and how to socialize and romance the villagers. Year 4 is going differently!

I've started romancing Harvey and Leah. Harvey is kind, and likes to keep to himself; he seems like a sensible choice. But her heart prefers Leah and her luv for foraging and nature.

My character wants to make her grandfather proud! Spring just started and I'm really expanding the farm. I've planted some maple trees on the side that will be for syrup, I'm trying my hand at a proper garden, and the rows of trees were planted on the first day. I also bough a few more cherry trees and made a row of those.

Wish me luck!!

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I'm excited to be at this advocacy conference, the travel here knocked me out.

Check-in = ✓

Find my people = ✓

Dinner = ✓

Get hotel wifi = ✓

Attend a colleague's zoom event while I sit on my vent = ✓✓

Now it's time for movies and sleep. So much planned for tomorrow!

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You know your boss understands the struggle when:

You ask to work from home so you can get some medical equipment fixed, and he has a tech appointment for his own equipment too 🙃

Fingers crossed for both of us 👍

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Car Camping for the First Time

In February a friend and I went on a road trip which landed us in West Virginia, Tennessee, and North Carolina.

The first two nights on the road we car camped at Walmart and the rest of the trip we stayed with the people we were visiting.

Neither of us had car camped before so we didn't know what to expect. Staying at Walmart worked out just how I expected! We made sure to park in well lit areas near the semi trucks, but far enough away from the building that we weren't in the way of customers the following morning.

I can confirm that Grey Lady can easily sleep two people. To make things simple we kept the bed set up at all times, and just moved stuff between the front and back as needed. I had window coverings made out of reflectix and duct tape that worked out really well for the back windows. We used a black blanket to cover the items in the front seats, which also that blocked the front view.

Our first stop was Morgantown, WV because I'm a Fallout Nerd and I was way too excited to visit. I'm not sorry.

The Andy Griffith Show was one of my favorite shows on TV Land as a kid, and I always liked Don Knotts as an actor, so it was pretty cool to learn he was from Morgantown.

I didn't realize how much they love their cryptids. The town has begun a yearly event called Cryptid Bash and I'm hoping to attend in the near future.

They also have beautiful street art!

While in town we decided to visit Dent's Run Covered Bridge. We missed a turn and got slightly lost on winding dirt roads for a good hour, but we found it and it was awesome!

When we pulled over to check out the bridge I grabbed this beautiful shot of Grey Lady. She held up so well on those roads, especially for a newbie like me. Thankfully we got back to the main roads before darkness hit, or I don't know if we would have gotten out.

Next up we visited a friend in Chattanooga, TN. The morning after we got there she took us to a diner called Aretha Frankenstein.

We loved the décor and enjoyed the food. I grabbed chicken and biscuits which was delicious - at least to a Northerner like me. The friend we were visiting with got the pancakes and they were huge! She compared them to cutting the top off a cake before you frost it - it sounds accurate to me.

If you want a good view of the city check out Lookout Mountain. We went up both at night and during the day. There's "train" called the Incline Railway which take you up and down the Mountain. We didn't go on it, but to look at it reminded me of a roller coaster.

Our second day involved a trip to Nashville. Did you know they have a replica of the Parthenon ? I didn't before this trip.

As a person who loves world building, history and architect, being able to stand in a life like "ancient" temple was mind blowing. I've walked through replicated rooms at museums before, but nothing to this scale.

When we got to the main floor I went from feeling like I was in a dream to hyper focusing on all the details; comparing the size of the people against everything there and making mental notes so I get the scaling right in my stories.

After Nashville we headed into North Carolina and visited with family. If you're in or near Raleigh, NC I highly recommend the North Carolina Museum of Natural Science. Unfortunately I've reached my max on pictures for this post, but know that its an amazing museum and its free!

I also recommend checking out Apex Wings in Apex, NC if you enjoy laidback local food. They have what they call "egg rolls", but they're more like crispy wraps. Your choices are "reuben roll" which is a reuben in a crispy wrap, "italian roll" which is like a pizza in a crispy wrap, and "buffalo chicken roll" which is like a chicken finger wrap but crispy. We chose the assorted option so we could try all of them, and I look forward to doing it again!

Don't think this trip was without its bumps and bruises. It wasn't. We gained some stories and some lessons, but I'll save those for another post.

Reblog and let me know where you went on your first road trip!

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Continuing New Chapters

As I said in my last post: "a lot has happened" ... a third thing is that I bought a van!!

Its a 2014 Chevy Express passenger van, with all wheel drive, a factory back up camera, a tow package, and has only been in NY for a couple years. I'm not planning on towing anything, but the backup camera was on my list, and AWD was a bonus.

The previous owner kept excellent care of it, meticulous maintenance records, and it was stored inside when not being driven. The motor is only a year old, along with many smaller things that were replaced or upgraded to ensure its safety and reliability.

The day it was posted I called the seller and arranged to drive the two hours to see it; my dad wasn't thrilled, but was blown away after we checked it out. In his defense, the last van I asked him to check out ended up being a death trap. (I made notes and asked better questions this time around.)

Thankfully, he's been keeping it safe since I don't have room at my place. My house search includes having space for my van.

You're probably wondering, "why was he selling it?"

Unfortunately the owner had passed away. He had a small taxi business, which often included interstate adventures. This van has seen miles! And its why he kept such good care of it. One of his wishes was that the proceeds be denoted to charity, and that's what his estate was doing.

When I first talked to the seller he let me know the van had a salvaged title for unknown reason, and gave me the VIN number so I could look it up. We learned that it had been rebuilt a couple years after it was made and sold soon after. In this case living in NY came in handy - its originally from out of state and bought by the NY dealership who sold it to this last owner. Because NY has stricter requirements for dealerships than private owners, the frame would have been examined before the state issued a new title.

The executor and I helped each other navigate through the sale since neither of us had done one as an estate before. (The hold time for the DMV help line is no joke lol) He was so patient and helpful, and I'm thankful to have gone through the process with such a person.

I don't know if he'll ever see this, but if he does: Thank you for your kindness. You and your family deserve all the best!

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Closing Old Chapters to Open New Ones

A lot has happened since my last post, so I wanted catch you up before there's more to add.

Back in May I had started fostering this five year old southern gentleman. I've never had a dog who wasn't used to the snow before; its been fun watching him grow from being terrified of it to easily leaping through piles as he refuses to go back in the house.

He's not doing snow angles yet, but he'll gladly sit outside for what feels like forever and watch for squirrels (that don't exist because its winter).

Another big thing is last month I pulled the trigger on selling my house. This week I started packing, which is both stressful and calming.

I'm taking the opportunity to declutter as I pack. Its something I've been doing for a while in preparation to moving out, but at that time there was no urgency; it was just the idea that I wanted to move in the near future. But now its not a hypothetical, its a reality.

If you're wondering about the knobs in my kitchen that I posted about last time: I've taken them off so I can bring them with. I did the same with the shelves that I wanted to put up in my office space.

I guess the rule of thumb is that when you show the house, if its attached it goes with the house. I'm currently glad I dragged my feet with mounting my chandelier and replacing the bathroom mirror.

I always knew it would come to this, I just had to fully accept it.

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A New Winter Means a New Beginning

This week has felt freeing, and for the first time in a long time I'm not feeling stuck. I've been taking steps towards the life I want for myself and in the process gaining the skin I need to keep going despite obstacles.

I imagine in the not so far future I'll be at a fork in the road, but I'm trying to not look too far and worry about it. That fork involves the house I'm living in and the fact my future with it has felt so uncertain for so long has kept me from taking the steps to make it feel like home.

This year I've been trying to get out of that mindset and have begun doing/buying things to improve the house and how I feel in it. Yesterday that involved buying the drawer knobs below.

When ever I picture my ideal kitchen, it has colorful cabinets with mix-and-match door knobs. Well yesterday while I was shopping with a friend I found a pile of random drawer nobs in the clearance section, and immediately started digging. The picture only shows 1 of each style, so these aren't all of them.

At 11pm at night I was trying them out. They fit perfectly on the drawers, but I need shorter screwed for the cabinet doors. I'm sure I have the right size around here so I'll be going through my inventory this weekend.

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New Bullet Journal Setup

I started bullet journaling before I knew what #bulletjournal was. My dad keeps a pocket journal to write lists and reminders, and in college he encouraged me to do the same.

I'd always failed at using an agenda but as a young adult I needed some way to stay organized; I took his method and made it my own. Instead of using a small pocket journal I chose A5 as my preferred size. Instead of filling it with only lists and reminders, I included memories, doodles, and taped in scraps.

A couple years later I stumbled across a friend's blog post about her "bullet journal". It was much more artistic, but still resembled what I had been doing. I'd never seen anyone else use a notebook as a planner, but after searching the term I was face to screen with a whole community! I jumped into the rabbit hole - I watched all the videos, tried different styles, modified some and discarded others.

That was 8 years ago. Now in my 30's I'm pretty secure in my style of journaling, but I still like to try new things. That means this month I'm trying a health tracker. I've learned that monthly layouts don't work for me, so I've planned it out as weekly. Lets see how long I can keep this up ... {Update: One week if I don't draw them all out ahead of time.}

Happy Journaling!!

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My Basement Workshop

When I was in high school I enjoyed taking shop classes and being on stage crew, and have missed it since graduating. When I saw the workbenches in this basement I swooned.

I've been collecting tools for years in the name of "incase I need this", but never had anywhere to keep them accessible. Then I'd lose something and buy another, and before I knew it I'd have multiples of many things.

Fast-forward 4 years and I've yet to use my workshop; but I have a project coming up. Everything had gotten packed up when I had my drain tiles were replaced, but now they're all out again and waiting to be used!

All the things have memories attached. This house is filled with my mom, and the tools and storage drawers bring memories of my grandfather. And still all of it reminds me of the hours spent at the hardware store with my dad - one of my favorite places to wonder around and dream.

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My Farthest Road Trip So Far

Last month I went on my longest road trip! Broken over three days each way, I went down with my dad and then back up with a friend. We spent most of our time in Florida but also made a few tourist stops in Georgia, and visited family along the way.

On the way down my dad and I each chose places we wanted to visit, and my choice was the Ocmulgee Mounds National Historical Park. The picture of the giant hill is actually a picture of the Great Temple Mound. The remains of it were found during excavation in the 1930’s and was restored along with other mounds at the park; the floor in the temple is over 1000 years old. It was breath taking, seeing a structure that has so much history and imagining the city that was built around it. It’s a huge park and I’d like to go back for a couple days so I can explore and read everything.

One of the places my dad chose was The Allman Brother’s Museum at the Big House. The stained glass above is the front entryway to the museum; not original to when the band was living in the house but an awesome tribute to their time spent. There was a former roadie who was giving someone a personal tour, and every time we crossed paths I enjoyed listening in on his stories.

While in Sarasota FL I took a day to explore by myself. A family member had told me about the Tamiami Trail, so I grabbed my water and set off. I took a wrong turn and landed in downtown Sarasota, so I pulled over and walked around the city before trying a second time; again I got lost but I found a plaza with two antique stores so I pulled over and checked them out.

The pink flamingos where at a store called Todburn Antiques in Sarasota. I hope to go back again because it had such cool stuff, and the owner and his friend were awesome people. (Shout out to Don & Janet!)

My third attempt got me on the Trail and I got to drive down it in time for a rain storm.

The ride back home was an experience, and I definitely came home more confident about my driving than I was when I left.

The giant sombrero is called Sombrero Tower at a place called South of the Boarder. It’s a tourist trap that we didn’t get to stop at this time, but my friend and I agreed we have to go back. The amount of money they spend on billboards must be crazy, but they catch your attention! After telling family about it I learned the place has been around for decades, and at one point everyone had known someone who’d been there.

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"Shut up legs"

Today's going to be a slow day at the gym; I'm so tired from yesterday. But it was such a good day ^.^

- 9/15/19 -

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Food Goals

To not rely on frozen and canned foods

Create a meal plan

Updated: 8/18/19

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Fitness Goals

Do 1 hr on treadmill without getting dizzy

Do 10 pushups

Sit on the floor without my knees bent

Updated: 8/18/19

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ADHD culture is saying “what?” when you heard the question someone asked you but… It didn’t fucking… Register… In the brain? And then you hear the question before they ask again and interrupt them when they’re talking because now you’re An Asshole™ who understands