Ibs-qveen - Chronic Illness

There was a TikTok of an (American) woman who was documenting her husband’s 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 “Wow, that’s 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.” But instead it was nurses being utterly vile to this woman. Not saying “You’re right, it’s terrible that we’re forced to do our jobs in unsafe, unclean and outdated environments.” they were telling her she was a prime example of why patients’ 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. It’s 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 don’t think anyone blames nurses for hospital rooms being nasty. It’s not their job. It’s the job of custodial staff and maintenance. It’s the job of administration to fund those departments. It’s 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:

May is a HUGE spoonie awareness month! 💙🥄

#als #lymedisease #lupus #asthma #mentalhealth #cysticfibrosis #arthritis #celiac #huntingtonsdisease #ehlerdanlossyndrome #multiplesclerosis #fibromyalgia #bechets #bpd #stroke #braintumor #mecfs

Another free Notion template! This one is a digital medical binder to keep all your medical information in one place, to make the medical system easier to deal with. A minimalist and mobile friendly version coming soon!

Gumroad

Aesthetic Digital Medical Binder Notion Template

This Notion template is meant to help organize all your medical information to help make navigating the medical system easier! It contains t

[Text ID: "Just in case you needed to hear it, you deserve to be treated by a medical professional who listens to you, believes you, who never makes you question yourself, and who dies everything they can to help you."

By: chronicloveclub

End ID]

and ibs otter, which i made mostly for me lol. i really want her name to start with cy…. cypres…. cyril….. hmm

𝐍𝐀𝐕𝐈𝐆𝐀𝐓𝐈𝐎𝐍