I've been feeling a deep sort of calm happy feeling lately.
What if, everything works out? What does that even mean? Is the fact that I'm alive right now proof that everything is already working out?
I have one of those people who doesn't believe bad or tragic things happen for a reason… I couldn't get through the show Ozark but there are some lines where the main character expres...
2023-01-26 04:51:36 +0000 UTC View Post
Just thought I would share this on here in case it will help aid in the search:)
Fun facts about what my caregiving looks like based on the Colorado Medicaid, which does not give me a 24 hour caregiving assistance despite the fact that I am depending on either the ventilator or the diaphragm pacer to stay alive.
1. I get 12 hours of paid Medicaid care each day.
2. The shifts f...
2023-01-26 03:03:59 +0000 UTC View Post
My first live, so obviously I didn't tell any of you about it because I just wanted to save it and put it on here and… basically I am feeling frazzled and frustrated because I have this issue, but it looks like we may be getting answers soon. I'll be going live again tonight around 6 PM Mountain time, so if you want your ears to bleed while you watch me try to sing and drink glasses of wine y...
2023-01-24 22:23:41 +0000 UTC View Post
I'll be making a video updating about the situation with my pacer. It's extremely frustrating and I'm hoping that we will have it resolved by this week end, but there's no way of knowing right now if it's going to be a big problem or something easily handle it.
I guess it's supposed to get cold and Snow again, and between that and the stress of having to be dependent on a ventilator again...
2023-01-24 21:28:34 +0000 UTC View Post
The diagram pacer is still not working correctly. As soon as we plugged in the cord this morning my body had an instant reaction and my blood pressure went dangerously high again.
I am still saying fuck. Under my breath.
My caregiver also might not be coming in tonight because of the baby, she hasn't had it yet but she's about to, and that just adds to the stress I already hav...
2023-01-22 23:56:24 +0000 UTC View Post
This explains more of what I think happened and shows me breathing off of everything.
2023-01-21 23:45:31 +0000 UTC View Post
Every morning, we plug me into the diaphragm PACER after being on a ventilator all night. Usually I have no problems with us, but today as soon as I was plugged in, my heart rate and blood pressure skyrocketed too dangerous levels. Somehow, the area seems irritated and maybe the wires were polled on somehow. I'm too frustrated and anxious to correct my typos, by the way whenever you see a post ...
2023-01-21 23:43:23 +0000 UTC View PostI save all my songs about California
Maybe it's because I can't say
It was nice to know ya
And all the ways I've grown I wish I'd shown yeah
I miss you but I'm not alone here.
You push and pull the telepathy
Wish you could just say I'm your destiny,
But that's just a wish, this is poetry
You can't leave her now, and you desperatel...
2023-01-19 21:40:26 +0000 UTC View Post
Pet peeve's: being manipulated and controlled
Disabled women still have these. Disables women's sex lives still exist in matter. Well mine doesn't exist yet, but it fucking matters. Unapologetically.
I might be a slut, I might be a family disappointment. Hi. Don't. Care.
Do you know the amount of pain I have been through? Didn't think so. So don't judge.
Sex isn't sinful. Nature is the purest thing there is, and every single...
2023-01-19 04:50:28 +0000 UTC View Post
I'm so overwhelmed.
Not sure why the voices in my head have to get so loud all the time.
Not sure why I am constantly reminded by my parents that all of this is all my fault.
Maybe it is.
Here I am. Your favorite family disappointment. I'll be here as long as I can.
Calling all the guides and angels and good thoughts. I seriously need to find more caregivers. Ones that are young, want to do fun things, and approve of the fact that I'm starting to date people. Today one of my caregivers said she couldn't take me to my date next Sunday because she's afraid he's a psychopath and her husband won't let her.! I highly doubt that a sweet over thinking ultra athle...
2023-01-12 05:05:21 +0000 UTC View Post
And over there on my scandalous Tier I'm uploading sexy videos of me vaping and eating chocolate…
Tell your friends…
I've been in a bit of a slump mentally fighting Demons I can't give names to, and the only thing that helps is listening to Grimes full blast in my room while I wait for a mythical relationship to save me from a lifelong tragic lonely cannabis infused quadriplegic...
2023-01-10 04:47:10 +0000 UTC View Post
I love collecting quotes from the books and reading. Here's a short one from the hitchhikers guide to the galaxy. Props to this author you're making me laugh out loud.
2023-01-10 04:29:05 +0000 UTC View Post
… worried about finding new caregivers but also simultaneously ready to enter the next galaxy…
2023-01-09 04:45:08 +0000 UTC View Post
I have one week to read 35 chapters… Reading 1984 in five days kind of wiped me out mentally. Someone cuff me already and cuddle the heck out of me in cold Colorado for cuffing season. I promise your vocabulary would improve.
e
2023-01-09 02:40:04 +0000 UTC View PostSo, podcast names?
Paralyzed and polyamorous? Paralyzed and paranoid? Paralyzed and practically perfect in every way?
Decisions decisions.
Love,
e
2023-01-08 22:54:06 +0000 UTC View Post
I'm going through a creative dry spell, so I'm thinking in the interim Time before I receive my new outfits to try different Photo shoot ideas, I'll be doing some audio files describing all the events of my accident and injury. I know a lot of you have asked me and it's an extremely complicated and traumatic story.
Also I was sick yesterday or at least feeling sick to my stomach because I at...
My 92 year-old grandma, ruth, is in the hospital with pneumonia. She usually lives with us, thankfully my parents enjoy having her around and don't want to ever see her in a facility. We are all pretty worried about her but it looks like she has an enlarged heart that is more of a problem then the pneumonia. Please keep her in your prayers. The hospital she is at is a local one, I've been there...
2023-01-06 04:35:01 +0000 UTC View Post
Somebody in the disabled Community referred to 2023 as the year of more accessibility. I hope I can be a part of making that true in someway.
Meanwhile…
I resolve to continue being me and finding new ways to enjoy myself.
Happiness,
e
2023-01-01 22:16:41 +0000 UTC View Post
You should feel lucky you get to look at my feet.
2023-01-01 01:46:13 +0000 UTC View Post
It's a little absurd. As someone who is dependent on other Devices to breathe, I should automatically qualify for 24 hour caregiving paid by Medicaid. However from the very beginning I have only qualified for 12 hours daytime caregivers, and my parents have to take care of me at night. When you see a lack of content, it's because either my current caregivers are too exhausted to help me with vi...
2022-12-31 05:16:11 +0000 UTC View Post
This place was far out and artistic, however I must say for a power wheelchair it was barely accessible. Maneuvering the narrow walkways kept me focused so much on driving my chair and avoiding bumping into people or rolling over toes that I did not get to appreciate the art as much as my able-bodied caregiver.
I'm glad I made it through most of the sections, however I did avoid the strob...
2022-12-30 01:41:01 +0000 UTC View Post
Here's a sneak peek… for some reason I didn't realize that to go live I have to certify my account 24 hours in advance. So I did not get a lifestream last night:/ I did get a lot of video footage though and I am working on putting it all together for a longer video.
Hope you enjoy this one in the meantime,
e
