Elle Rose
patreon
The reality of life with a disability
🕑 Added 2022-12-31 05:16:11 +0000 UTCIt'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 videos or photos, or they had to call in sick and my parents had to take care of me. Especially this time of year. One of my caregivers is about to have a baby and she still comes in nearly every day even though she is so tired and is the sole breadwinner in her family. But the point is, I need more hours justified anyway to add nighttime caregivers… and for some reason it's a nightmare finding caregivers in Colorado. I'm really really really hoping that when I move to Seattle next year this process will be easier.
As somebody pointed out to me recently, I am not a contente making machine. I'm a woman with a very very high spinal cord injury and if you research most people with my injury, they are not living a fast paced lifestyle or trying to make the people around them happy because simply existing is a huge job. I love creating material for everybody on here who is supporting me, and I intend to continue, however please have patience with me as a lot of big changes are going on and I cannot always create the way I want to because I rely 100% on my caregivers. Without them, this Patreon would not exist. I have used more than half of the funds I have earned to pay for their bonuses and salaries in an attempt to keep them as my caregivers because I cannot offer them health insurance through the agency that I use and I'm always worried that they will leave for another job.
When you look at me, remember that I am not just a baby doll looking girl in a wheelchair posing for you. Being only able to barely move my neck is not easy and dealing with the daily frustrations as well as trying to be productive and useful, at the same time battling depression and stigma, it's really fucking hard. I'm in almost constant pain because I have hardware in my neck where my vertebrae was fractured, and I never know if the hardware Will stay stable or at some point will need surgery again. Lately I've been getting headaches and more pain so in the new year I have to have it checked out because I don't know what will happen if the hardware loosens. I would like to live my life a little before that happens… I would like to get my own house and a bunch of dogs and a full caregiver team and maybe fall in love at least a couple times. When you see me, you only see what's on the surface. There's a whole world that you don't see behind the scenes which is very stressful. I appreciate everybody who encourages me end thanks I am Worth something. When you believe in me and helps me to believe in myself. It helps me to envision a future that is not Limited to the stigma of how disabled people should live, or rather the death that society subscribes us to..
Comments
Zoni
Your amazing
