I’m Free from the Hospital!!

 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

  

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.

Stardew Valley - Year 4

Originally posted by angelhides

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.

Originally posted by moviequotiq

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.

Originally posted by thelambliesdown1974

Wish me luck!!

SANYS Statewide Conference 2023

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!

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 an appointment for his own equipment too 🙃

Fingers crossed for both of us 👍

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.

Let me know where you went on your first road trip!