Alexithymia Sucks. This Chart Helps!

Chronic pain things😎

It's too hot to exist. 🥵

Stay safe, SpoonieStrong fam. 💙🥄

[text:

"Just because a doctor hasn't found something, doesn't mean that something isn't there.

Read that again."]

what are your thoughts on ibs diagnosis

78% of people reporting to ERs due to IBS have chronic gastritis.

population studies on microscopic colitis are rare, but have found that rates are much much higher on a population level than previously assumed

the symptoms labeled as ibs (diarrhea and constipation with no obvious flags for inflammatory bowel disease) are often treated as an issue of simple dietary intolerances, or as a psychosomatic condition, and people with ibs are told to follow various diets, or to "reduce stress."

these diets tend to be high fiber, which could literally kill someone whose actual issue is gastroparesis, or could severely aggravate microscopic colitis. i know that when i was trying to eat high fiber, my symptoms were completely unmanageable, and switching to a low fiber diet is the only thing that's helped at all. the food intolerance stuff can be really helpful for people who do have rare food intolerances, but for people who actually/also have autoimmune gastritis, it wastes time that could be spent monitoring for gastric atrophy, metaplasias, and precancerous lesions.

the worst part of this is that things like microscopic colitis and h-pylori related chronic gastritis are treatable, either with steroid medication or antibiotics to kill the h-pylori. but if you're dismissed with "dietary changes" or "reduce stress," then you're not getting treated for conditions that can cause really serious tissue damage and increase your cancer risk.

basically ibs is a "fuck you get out of my office" diagnosis

𝐏𝐈𝐍𝐍𝐄𝐃

𝐚𝐛𝐨𝐮𝐭 𝐦𝐞 : lexi / 24 / gad & ibs

𝐛𝐥𝐨𝐠 𝐭𝐨𝐩𝐢𝐜𝐬 : chronic illness / disability / invisible disability / gut health / mental illness / advocacy

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.

Ah yes, my favorite chronic illness game: is this normal, is this new, or am I dying?

Before you pay that not-covered hospital bill:

I want to take a min to spread awareness for the No Surprises Act after noticing a reddit post earlier.

This protection for patients just popped up in the past couple years, and the one major downside is that it's up to the patients to speak up to make use of it, but not everyone knows what it is.

"If you have private health insurance, these new protections ban the most common types of surprise bills. If you’re uninsured or you decide not to use your health insurance for a service, under these protections, you can often get a good faith estimate of the cost of your care up front, before your visit."

Consumer fact sheet

Typically, health insurance companies will help pay for bills from "in-network" providers, AKA their VIP inner circle gang turf. They won't help pay if you get medical care from another gang's henchmen (out of network).

This means that sometimes, a person would go to the hospital, which they knew had been covered by their insurance before, so they expect it's going to be relatively affordable. But they didn't know that multiple medical "gangs" were working in the same hospital. Their anesthesiologist, for example, was from a different gang. That specialist was out of network even though the surgeon and nurses were all in network.

Boom. Big bill for thousands of dollars and their insurance refuses to help pay it.

But now we have this law! The No Surprises Act means that insurance companies need to cover "surprise" expenses (under certain conditions).

If you don't have health insurance, hospitals and clinics need to give you an accurate quote before you get services, then foot the bill if they were too far off the mark.

The Fact Sheet section of the Centers for Medicare and Medicaid services have some wonderful user-friendly resources for you about health insurance and how this act works.

Keep in mind that Medicare and government-run programs always have weird rules for everything, so you might have different (yet similar) protections through those programs.

If you have a medical bill that wasn't covered by insurance and you think it might count as a surprise bill, please check out your rights and consider fighting it instead of letting it become a stressful expense or debt you can't repay.

Go here to start figuring things out for your situation:

Health insurance companies have way, waaaaay too much power over our lives. We need every drop of protection we can get - but it only counts as much as we can understand and use those protections!