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Dignity Health
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Hello Humankindness

One woman's journey coping with unseen pain may change how the world sees disabilities.

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Dignity Health

When Annie Segarra goes about her daily life, it's not immediately obvious she's in pain 24/7.

Since she's so used to living with discomfort, she's able to walk around for a few minutes, but any longer than that, and she has to sit down and rest. However, the fact that she's not always in a wheelchair makes many passersby question wether or not she really has a disability and often results in judging looks and harsh words.

"They can't see that you're in pain because you look 'just fine,'" Segarra explains.

All photos via Annie Segarra, used with permission.

Segarra has Ehlers-Danlos syndrome (EDS), which is a rare connective tissue disorder that affects collagen in the body and causes joints to stretch farther than normal. While that may sound like some sort of superpower, it's anything but, and it's also just the tip of the iceberg in terms of the symptoms that people who have it experience.

Since collagen runs through the entire body, EDS acts as an umbrella for a seemingly endless list of disorders, including poor vision, chronic fatigue, and joint pain. It's also likely connected to postural orthostatic tachycardia syndrome (POTS), which causes a person's blood pressure to drop and heart rate to spike upon standing.

Segarra lives with all these symptoms and many others, but more often than not, they are invisible to the outside eye.

The discomfort and anxiety that accompanies this is enough of a strain, but when you tack on doctors and everyone else not believing you're in pain, everything's amplified.

"It feels like being at the bottom of a well shouting up and there's nobody there," Segarra says.

Annie with her cane dealing with a pain spike at the grocery store.

What's worse, a large part of why she went undiagnosed for so long wasbecause doctors continued to downplay and dismiss her symptoms and self-diagnoses.

Segarra actually started having symptoms as early as infancy, but she didn't realize they might be connected until she reached her early 20s.

She was working two jobs and taking care of her sister who has autism when she started experiencing severe pain in her feet while standing. One of her jobs at the time was as hostess at a restaurant, so she was confronted with that pain quite often, but she thought it might just be an intolerance to wearing heels.

When it got to the point where she could barely stand at all, she went to a see a podiatrist. He took an X-ray of her feet while she was standing, and it looked like she had flat feet. He assumed that was the root of her pain, so he prescribed orthotics. (Later Segarra would learn that people with EDS often appear to have flat feet because of how their hyperactive joints react to weight.)

After orthotics did nothing to help, the doctor suggested creating arches in her feet surgically. Not knowing what else to do, Segarra agreed.

The surgery left her in an unimaginable amount of distress and unable to walk for close to a year. But it also ultimately led to her diagnosis.

Annie in the hospital.

Segarra learned she was strangely immune to anesthesia — another EDS-related symptom. After six months in a wheelchair caused extreme back pain, she got an MRI that showed something unusual: She appeared to have dislocated joints all over her body.

By that time, she'd been documenting her journey with chronic pain via a video blog for about two years and was regularly communicating with other chronically ill and disabled people online. When she described her symptoms, EDS had kept coming up. However, every doctor she mentioned it to dismissed it until the moment she broke down in front of her spine specialist.

At that point, she had been managing escalating symptoms on her own for over a decade, and every time she tried to get answers from a doctor, they either had no advice or mocked her for self-diagnosing such a rare disorder. She was scared and exhausted and had finally had enough.

Thankfully, a doctor (who happened to be a woman) came in at that moment and really listened to what Segarra had to say. The doctor admitted to not knowing about EDS, but after looking it up on her phone, she turned to the primary specialist and said, "She could have this."

That was the tipping point. From there, Segarra was referred to a geneticist who recommended a chromosome blood test to find the genetic variant for EDS. Six months later, she had an official diagnosis.

After all that, Segarra still calls herself lucky because her diagnosis only took three years to get. Many people with similar "invisible" disorders aren't so fortunate.

The experience set her on a mission to change the misconceptions surrounding disabilities and educate others about the many ways one can be impaired.

Ever since middle school, Segarra's been an activist for one cause or another. As a queer Latinx woman, she always had a lot to fight for, but after experiencing years of blatant disregard for her disability, this fight reinvigorated the rest.

"Becoming disabled made me look at my activism real hard," Segarra says.

She uses her skills as a performer and storyteller to give a face and voice to her illness. On her YouTube channel, she confronts the prejudice people with less visible disabilities face on a daily basis.

Segarra has firsthand experience being called a faker simply because people don't realize that some disabilities don't require people to use an assisting device like a wheelchair all the time.

A note someone left on the car of a person with an invisible disability.

She also explores how having a disability affects things like body positivity and being in the LGBTQ community.

Unsurprisingly, Segarra's passion and strength is affecting a growing number of followers, but she knows there's still much more work to be done.

Right now, there's hardly any representation of people like her in media, which makes it easy for the world to remain ignorant about them. For example, Segarra had a heck of a time finding a character to be for Halloween because people with disabilities barely exist in pop culture.

But her activism is slowly but surely changing peoples' perceptions. She says she gets lots of comments like, "Thank you for saying this because I was one of those assholes who thought like this."

She's also helping people who are still searching for a diagnosis realize they're not alone on their journey.

Segarra hopes that one day, no one will be discounted for having a less visible disability. However, for that to happen, we have to learn to quell their snap judgements, and that starts with admitting we don't know what all disabilities look like.

Learn more about how to spot disabilities (spoiler alert, you can't) here:

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Science

Researchers dumped tons of coffee waste into a forest. This is what it looks like now.

30 dump truck loads and two years later, the forest looks totally different.

assets.rebelmouse.io

One of the biggest problems with coffee production is that it generates an incredible amount of waste. Once coffee beans are separated from cherries, about 45% of the entire biomass is discarded.

So for every pound of roasted coffee we enjoy, an equivalent amount of coffee pulp is discarded into massive landfills across the globe. That means that approximately 10 million tons of coffee pulp is discarded into the environment every year.


When disposed of improperly, the waste can cause serious damage soil and water sources.

However, a new study published in the British Ecological Society journal Ecological Solutions and Evidence has found that coffee pulp isn't just a nuisance to be discarded. It can have an incredibly positive impact on regrowing deforested areas of the planet.

via British Ecological Society

In 2018, researchers from ETH-Zurich and the University of Hawaii spread 30 dump trucks worth of coffee pulp over a roughly 100' x 130' area of degraded land in Costa Rica. The experiment took place on a former coffee farm that underwent rapid deforestation in the 1950s.

The coffee pulp was spread three-feet thick over the entire area.

Another plot of land near the coffee pulp dump was left alone to act as a control for the experiment.

"The results were dramatic." Dr. Rebecca Cole, lead author of the study, said. "The area treated with a thick layer of coffee pulp turned into a small forest in only two years while the control plot remained dominated by non-native pasture grasses."

In just two years, the area treated with coffee pulp had an 80% canopy cover, compared to just 20% of the control area. So, the coffee-pulp-treated area grew four times more rapidly. Like a jolt of caffeine, it reinvigorated biological activity in the area.

The canopy was also four times taller than that of the control.

Before and after images of the forest

The forest experienced a radical, positive change

via British Ecological Society

The coffee-treated area also eliminated an invasive species of grass that took over the land and prevented forest succession. Its elimination allowed for other native species to take over and recolonize the area.

"This case study suggests that agricultural by-products can be used to speed up forest recovery on degraded tropical lands. In situations where processing these by-products incurs a cost to agricultural industries, using them for restoration to meet global reforestation objectives can represent a 'win-win' scenario," Dr. Cole said.

If the results are repeatable it's a win-win for coffee drinkers and the environment.

Researchers believe that coffee treatments can be a cost-effective way to reforest degraded land. They may also work to reverse the effects of climate change by supporting the growth of forests across the globe.

The 2016 Paris Agreement made reforestation an important part of the fight against climate change. The agreement incentivizes developing countries to reduce deforestation and forest degradation, promote forest conservation and sustainable management, and enhance forest carbon stocks in developing countries.

"We hope our study is a jumping off point for other researchers and industries to take a look at how they might make their production more efficient by creating links to the global restoration movement," Dr. Cole said.


This article originally appeared on 03.29.21

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Pop Culture

American mom living in Japan shows her son's adorable required school supplies

Okay, these are so freakin' cute.

Photo credit: Canva

We all need those adorable hats and loafers.

July is almost over, which means that a return to school is just around the corner. That also means that back-to-school shopping has begun.

But what might that look like in other parts of the world? Thanks to the internet, we need not wonder.

Moriah is an American mom who began living in Okinawa, Japan, in January 2024 after her husband got stationed there. She regularly posts videos showing just how different daily life is in her new home, not least of which being her son’s school.

In a now viral TikTok clip, Moriah shared her son’s latest school supply haul. And let’s just say…it looks a little different than what we normally see in the U.S.

Moriah began her clip by saying that everything cost 65,000 yen, which roughly amounts to $420. That’s a pretty hefty price for just one kid, but wait til you hear what was purchased.

For the first item, prepare to be overwhelmed by cute kid fashion. Moriah showed off an adorable black and white “summer hat,” to match his summer uniform. In winter, he’ll have a different uniform, and a different matching hat. Plus an outside hat…Japan has their hat game down pat.

But wait, there’s more! Moriah’s son also gets a name tag that looks like it was plucked right out of a wholesome anime, which will be pinned onto his uniform each day, in addition to two gym shirts with his name in Japanese sewed onto the front, three pairs of gym shorts, two sets of the blue short overalls, two of the button-up shirts, an art smock and last but not least…a bow tie.

“They wear this during formal events,” Moriah explained.

Of course, the boy needs matching shoes for all these outfits, which are also part of the supply haul. Then his school outfit will be complete with an “itty-bitty” backpack.

And now, we get to the actual supplies.


@momentswithmoriah Japanese school supplies 🤩 #okinawa #okinawajapan #japanese #japaneseculture #shoppinghaul ♬ sonido original - SONIDOS LARGOS


First up: a pianika, which is a small, portable breath-powered keyboard that’s standard for most Japanese elementary schools.

“All of the kids get these and learn how to play them and then they'll have a school event where we get to watch and see what they've learned,” Moriah explains before playing a couple of notes.

Then there’s the drawing pad, a jump rope, art supplies like scissors, glue pastels, markers and clay, all of which fit into a nifty supply box that’s top also acts as a mold for the clay that they use. There’s even a pouch that holds onto all “communications for the parents.”

Because organization is clearly a priority, Moriah says that she has to label each and all of these supplies. But she luckily has her kid’s name in Japanese on a stamp to make that task a little easier.

And that’s it! At least, for brand-specific school supplies. Moriah said her family would later go out to stores to get things like her son’s lunch mat and water bottle, which could allow for a little more personal flair.

The mom then shared that when she first attempted this three months ago, it felt really “daunting.” But now with a bit more experience under her belt, she’s “actually excited to get everything organized and ready for the start of the school year in September.”

Though Moriah and her family might only be in Japan for 3-6 years (according to her follow-up video), she’ll certainly have racked up quite a few memories while there, in addition to fun videos for us! It’s always cool to see how different cultures navigate life. Granted, even within Japan, different schools are bound to operate differently, but still, this is a prime example of how the internet is a great way to celebrate and explore differences.

To follow along on more of Moriah’s Japan journey, follow her on TikTok and Instagram.

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Naming twins is an art. Here are some twin names people say are the best they've ever heard.

With twins, all the regular pressures of having a baby are doubled, including choosing a name.

Photo credit: Canva

Are you in favor of rhyming twin names? Or is it too cutesy?

Having twins means double the fun, and double the pressure. It’s a fairly known rule to name twins in a way that honors their unique bond, but that can lead to overly cutesy pairings that feel more appropriate for nursery rhyme characters than actual people. Plus, it’s equally important for the names to acknowledge each twin’s individuality. Again, these are people—not a matching set of dolls. Finding the twin baby name balance is easier said than done, for sure.

Luckily, there are several ways to do this. Names can be linked by style, sound or meaning, according to the baby name website Nameberry. For example, two names that share a classic style would be Elizabeth and Edward, whereas Ione and Lionel share a similar rhythm. And Frederica and Milo seem to share nothing in common, but both mean “peaceful.”

Over on the /NameNerds subreddit, one person asked folks to share their favorite twin name pairings, and the answers did not disappoint.

One person wrote “Honestly, for me it’s hard to beat the Rugrats combo of Phillip and Lillian (Phil and Lil) 💕”

A few parents who gave their twin’s names that didn’t inherently rhyme until nicknames got involved:

"It's the perfect way! Christmas cards can be signed cutely with matching names, but when they act out you can still use their full name without getting tripped up.😂"

"The parents of a good friend of mine did this: her name is Allison and her sister is Callie. Their names don’t match on the surface, but they were Alli and Callie at home."

“Alice and Celia, because they’re anagrams! Sound super different but have a not-so-obvious implicit connection.”

This incited an avalanche of other anagram ideas: Aidan and Nadia, Lucas and Claus, Liam and Mila, Noel and Leon, Ira and Ria, Amy and May, Ira and Ari, Cole and Cleo…even Alice, Celia, and Lacie for triplets.

Others remembered name pairs that managed to sound lovely together without going into cutesy territory.

twin names, twins, babies, baby namesThese matching bunny ears though. Photo credit: Canva

“I know twin toddler boys named Charlie and Archie and they go so well together,” one person commented.

Another wrote, “Tamia and Aziza. I love how they follow the same sound pattern with the syllable endings (-uh, -ee, -uh) without being obnoxiously matchy matchy.”

Still another said, “Lucy and Logan, fraternal girl/boy twins. I think the names sound so nice together, and definitely have the same 'vibe' and even though they have the same first letter they aren't too matchy-matchy.”

Other honorable mentions included: Colton and Calista, Caitlin and Carson, Amaya and Ameera, Alora and Luella, River and Rosie, and Eleanor and Elias.

One person cast a vote for shared style names, saying, “If I had twins, I would honestly just pick two different names that I like separately. I tend to like classic names, so I’d probably pick Daniel and Benjamin for boys. For girls my two favorites right now are Valerie and Tessa. I think Val and Tess would be cute together!”

Overall though, it seems that most folks were fans of names that focused on shared meaning over shared sound. Even better if there’s a literary or movie reference thrown in there.

twin names, twins, babies, baby namesMany adult twins regret that their names are so closely linked together. Photo credit: Canva

“My mom works in insurance, so I asked her. She’s seen a lot of unique ones, but the only twins she remembers are Gwenivere [sic] and Lancelot... bonus points... little brother was Merlin,” one person recalled.

Another shared, “If I had twin girls, I would name them Ada and Hedy for Ada Lovelace and Hedy Lamarr, both very early computer/tech pioneers. Not that I’m that into tech, I just thought it was a brilliant combination.”

Other great ones: Susan and Sharon (think the original “Parent Trap”), Clementine and Cara (types of oranges), Esme and Etienne (French descent), Luna and Stella (moon and stars), Dawn and Eve, plus various plant pairings like Lily and Fern, Heather and Holly, and Juniper and Laurel.

Perhaps the cleverest name pairing goes to “Aubrey and Zoe,” since…wait for it… “they’re A to Z.”

It’s easy to see how naming twins really is a cool opportunity for parents to get creative and intentional with their baby naming. It might be a challenge, sure, but the potential reward is having the most iconic set of twins ever. Totally worth it!

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Pop Culture

Hugh Jackman and Ryan Reynolds deliver the most entertaining 'Hot Ones' interview ever

They reached whole new levels of spicy silliness.

Credit: First We Feast/YouTube

Watching Reynolds keep a brave face while Jackman hopelessly struggles is everything.

Ryan Reynolds and Hugh Jackman ended their promotional journey for “Deadpool and Wolverine” truly in the spiciest way possible.

The superhero duo appeared in the latest episode of “Hot Ones,” the internet’s favorite interview series where guests eat increasingly spicier hot wings while answering burning questions. And boy, torture never looked so good.

At first, each held their own as they discussed how the movie actually began as a fake-out plan.

“The original idea with this movie was to shoot a fake movie called 'Alpha Cop,' that was intentionally bad… It was about two guys that were sharing one brain and together they make the perfect cop…and the poster says ‘Alpha Cop: two cops, one brain, all balls,’” Reynolds explained to “Hot Ones” host Sean Evans.

“And it was meant to be kind of like horrible. Like 10 people in America would go to see this movie on opening weekend and five minutes into the movie the Marvel logo would flip up and it would actually be ‘Deadpool & Wolverine.’”

There was also a chat about former jobs, where Jackman (already beginning to tear up from the heat) recalled being a clown-for-hire.

“I literally rented a clown outfit…and we had no skills, literally no skills…I broke my rule and I did an 8-year-old’s party. I always knew they were going to find me out and he found me out and this kid yelled to his mom, ‘Mom, this clown is crap.' And I’m like ‘Shut up, kid.'”

Then around the halfway point, hilarious chaos ensued. Though both suffered through the latter rounds, poor Jackman was clearly more victimized. Poor fella goes though all the stages of spice grief—tears, sweat, uncontrollable shimmies, delirious laughter…even bargaining.

Ryan Reynolds and Hugh Jackman Go Claws Out While Eating Spicy Wings | Hot Oneswww.youtube.com

"It tastes angry," Jackman said of the sixth hot sauce. "You know what I'm gonna eat? A bag of rusty razors that's what I'm gonna eat."

Reynolds, on the other hand, was doing far better at keeping his cool. As well as his sarcasm.

"Hugh has never felt physical pain so for him as a pampered starlet, this is important, an important rite of passage," he quipped.

This dynamic was, undoubtedly, everybody’s favorite aspect of the interview.

“The funniest part is watching Ryan provide deep, in-depth responses to Sean's questions and Hugh just fighting for his life in the background,” one viewer said.

Another echoed, “Ryan cracking jokes and Hugh just fighting to survive is funnier than it has any right to be. This is one of my favorite ones to date.”

Some else astutely wrote, “You know the friendship is real by how much they enjoy seeing each other suffer. Like brothers, really.”

But of course, even though Reynolds and Jackman have projected animosity toward each other for laughs, underneath all those jabs is a true friendship.

"Most of our conversations are very vulnerable,” Reynolds revealed.

Jackman even praised Reynolds as a “great father, great family, great family, loves his job, loves his work.”

He continued, “and I don't have anything -- apart from making me do this and he said if you don't I'm gonna just disparage you and make fun of you and tell all of Australia that you just didn't have the guts and Canada is better -- but apart from that, I have nothing. There's nothing [bad to say]."

As Evans put it, they bravely “climbed the hot sauce mountain together,” and we love them all the more for it.

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Family

Wife has the perfect response when husband introduces her to coworkers as 'The Housewife'

She began by laughing hysterically.

via Artur Voznenko/Unsplash

An anry wife shares her thoughts with her husband.

A husband invited some new coworkers over for dinner and instead of properly introducing his wife, he made a sexist joke that she felt was belittling. The wife, who goes by the name Sadie on Reddit, shared the story on the AITA forum to ask if she responded correctly.

Spoiler alert: Yes, she did.

“My husband invited his new coworkers over for dinner. When they arrived, he introduced me by gesturing at me and saying, ‘This is Mrs. Smith (he didn't even say my name)...the housewife!'" Sadie revealed.

“I looked at him for a second, then I started laughing hysterically,” Sadie continued. “I then told said, ‘No, honey, I work full time, and YES I still act like a housewife when I'm home because you simply can't bother to help.’” After Sadie’s remark, the guests stared at the husband, who tried to laugh it off and then changed the subject by asking them if they wanted a drink.

The rest of the dinner was awkward, with the husband and wife exchanging angry glances. After the guests left, the husband blew up at Sadie, saying that she laughed like a “lunatic” and that she ruined “his image.”

“I told him he was wrong to lie about my status and deny my degree, to begin with,” Sadie continued. He said I could've talked to him about it privately later but not like this, and making his coworkers think he's useless.” Sadie asked the online forum if she was out of line, and they responded with a collective no.

People overwhelmingly supported the wife, raising an issue far beyond the fact that her husband was seriously inconsiderate. It’s a big red flag in a relationship when one spouse diminishes or belittles the other in public or private.

“Men who diminish their partners to look better at the office are gross. He only seemed to care about his embarrassment and not yours. I'd be mortified if my husband used a lie that robbed me of my success and accomplishments to prop himself up," Geranium27 wrote.

“It's a red flag for the relationship. He doesn't want a partner who is an equal. He wants a dependent woman who he can provide for completely so he can feel like a man," RedWanderingLizard added.

Some also noted that it was wrong of him to disparage homemakers.

"He diminished (being a housewife is not a ‘low’ role, but he meant it that way) you in public, you corrected him. In public. As he deserved,” LetThemEatHay wrote.

The viral post received over 24,000 comments, highlighting the idea that belittling your partner is a serious sign of a dysfunctional relationship that should not be ignored.

According to Psychology Today, backhanded compliments, digs and subtle put-downs are attempts by one partner to make the other feel small and themselves feel big. “Although cleverly disguised as a joke or a compliment, these comments may qualify as ‘toxic’ if they sting, cause confusion, and replay in a person’s mind for days, disrupting their peace,” Erin Leonard, Ph.D. writes.

Ultimately, commenters overwhelmingly agreed that Sadie was right not to let her husband's belittling compliment go unnoticed. By sharing it online, she opened up a meaningful discussion about appropriate humor in relationships. Studies show that it’s healthy for partners to joke around with one another, but when the comments are thinly veiled put-downs and backhanded compliments, it’s no laughing matter.


This article originally appeared on 5.9.24

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