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๐๐๐จ๐ฎ๐ญ ๐ฆ๐ : lexi / 24 / gad & ibs
๐๐ฅ๐จ๐ ๐ญ๐จ๐ฉ๐ข๐๐ฌ : chronic illness / disability / invisible disability / gut health / mental illness / advocacy
My face is having uncontrollable spasms. Great. It hurts really, really, really bad.
I think part of why I have trouble explaining pain to the doctor is when they ask about the pain scale I always think โWell, if someone threw me down a flight of stairs right now or punched me a few times, it would definitely hurt a lot moreโ so I end up saying a low number. I was reading an article that said that โ10โ is the most commonly reported number and that is baffling to me. When I woke up from surgery with an 8" incision in my body and I could hardly even speak, I was in the most horrific pain of my life but I said โ6โ because I thought โWell, if you hit me in the stomach, it would be worse.โ
There was a TikTok of an (American) woman who was documenting her husbandโs ICU room and expressing displeasure with the state it was in, it was generally unclean with broken equipment, rust stains, clipped flooring, things that can make a medical environment unsafe. I opened the comments expecting people to be like โWow, thatโs scary. And a huge infection risk. ICU stays often cost patients upwards of $100k and not enough of that money is going to maintenance and cleaning.โ But instead it was nurses being utterly vile to this woman. Not saying โYouโre right, itโs terrible that weโre forced to do our jobs in unsafe, unclean and outdated environments.โ they were telling her she was a prime example of why patientsโ families were the worst part of their job.
The hospital that charged my insurance $87k for a single endoscopy & colonoscopy performed on me was recently fined for having dirty equipment. If not on sanitation, if not on giving nurses and providers better wages, if not on updating the facility, where the hell did that money go? If nurses could band together to attack and criticize hospital administration and the American medical system in the way they band together to attack and criticize patients and advocates online, all of our lives could improve.
But of course it is easier to raise the sword against the vulnerable person dependent on your care, on the people often experiencing the worst day of their life when they are too frightened and in pain to treat you with courtesy. Itโs easier to lash out at the patient inquiring about their medication after waiting two hours than to lash out at the people responsible for making you responsible for 30 patients at once.
I donโt think anyone blames nurses for hospital rooms being nasty. Itโs not their job. Itโs the job of custodial staff and maintenance. Itโs the job of administration to fund those departments. Itโs a problem at the top. If we could all look upwards instead of down when it comes to who we criticize and blame, we could make progress.
Do people know about Vocational Rehab? If you're USAmerican they have this in every state.
It's a program that helps disabled folks access education, training, and employment. For FREE.
You only have to be disabled to qualify (autism, ADHD, mental illness, physical illness, etc) and they cover very broad categories of disability. You do NOT have to be officially diagnosed yet when you walk in - they will even help pay for your diagnosis if you are struggling w disability.
I applied with my suspected autism and fibromyalgia, and they paid for 100% of my formal autism assessment.
Once your disability is established they will give you career counseling to learn about your interests and skills, and depending on the plan you create with your caseworker they will then help with school or finding employment. They paid for 100% of my college tuition and books, and even provided a laptop for me to use.
You do not have to pay anything for this program. If you make above a certain income, you will have to contribute to educational costs but will still receive assistance.
They will also help with the cost of things like mental health counseling while you work towards your goals, clothing for interviews, etc.
They cannot discriminate based on your race, gender, or sexual orientation.
They won't make you do excessive meetings.
They will allow you to do meetings with your caseworker remotely.
They will not drug test you.
They want you to succeed.
I'm sure that individual experiences vary but my caseworker was exceptionally easy to work with and very kind.
Vocational Rehab is a phenomenal resource every disabled person should be aware of. Here is the list of offices in every state: