Finding Comfort in the Chronic Illness Community

by Anna Jeter: For Complete Post, click here…

My grandma’s favorite story to tell about me is when I was 5 years old and she was staying with my siblings and me while my parents went on a short trip.

A home nurse was summoned one morning to take care of my central line and prepare the medicine for my IV infusion pump. According to my grandma, I was diligent in providing instructions to the nurse, making sure she performed every step correctly, from washing her hands with the right solution to removing the bubbles from the syringe.

After a while, the nurse exclaimed, “You sure are bossy for a 5-year-old!” My grandma got a kick out of this and never let me live it down.

The truth is, my early diagnosis with pulmonary hypertension (PH) demanded that I grow up more quickly than others my age. Perhaps part of it is my nature, but I believe my illness contributed a great deal to my old-for-my-age demeanor, which was contradicted by my small-for-my-age stature.

I think this is a shared truth among those of us in the chronic illness community. While I had a wonderful, joyous childhood, I also had an inherent sense of responsibility and awareness. If something went wrong, I had to be able to respond. When going off to school or sleeping at a friend’s house, it was my responsibility to communicate what was needed for my care in the event of an emergency. With chronic illness, we must become our own advocates, regardless of age.

While I’m grateful for the ways that this has shaped me over the years, it also sometimes made it difficult to be on the same page as my peers. Even now, as an adult, I find that I connect more with people over things like hardship and life experience rather than age or other commonalities.

Check this Michigan map for childhood lead levels in your community

By Kelly House: For Complete Post, click here…

It looks like a public health success story. 

Overall, the percentage of Michigan children with elevated blood lead levels has been falling for more than two decades, from nearly a third of children tested in 2000 to just 2.5 percent of children tested in 2020.

But those statewide gains — the result of bans on leaded paint, leaded gas and lead water delivery pipes, along with decades of work to remove existing lead from homes and neighborhoods — can be deceptively reassuring.

As the adjacent map illustrates, the toxic metal continues to inflict an uneven toll in Michigan, afflicting the residents of cities, from Detroit to Grand Rapids, at far higher rates than the state as a whole. 

Is Affordable Housing Good For Public Health? A New Study Says It Could Be

By Ally Schweitzer: For Complete Post, click here…

The socioeconomic benefits of affordable housing are well-documented.  Research has demonstrated that increased access to affordable housing is the most cost-effective way to both reduce childhood poverty and increase economic mobility. 

But what about its positive effects on health? 

That question is at the center of a new peer-reviewed study by two professors at George Washington University, who set out to examine the relationship between cardiovascular health and a particular kind of affordable housing policy known as inclusionary zoning.

Local jurisdictions including D.C., Montgomery County, Arlington County, and Fairfax County have inclusionary zoning programs. The rules vary by locality, but they generally require developers of new multifamily buildings to set aside a certain number of units for housing that’s affordable to low-income residents. Or, they pay to create them somewhere else.

The study, published last month in the journal Circulation, shows a link between heart health and inclusionary zoning across the hundreds of U.S. jurisdictions that have policies on the books. In those places, residents overall had “uniformly better” cardiovascular health outcomes, including lower blood pressure, lower cholesterol, and lower rates of prescribed blood pressure medication, it says.

The association held up even when researchers accounted for other factors that could contribute to better heart health, says co-author Gregory Squires, a professor of sociology, public policy and public administration at GW.

Michigan private insurers no longer waiving costs for COVID treatment

By Robin Erb: For Complete Post, click here…

Nearly every Michigan resident with traditional health coverage will now likely face some medical bills if they get severely sick from COVID.

While COVID vaccines and boosters along with diagnostic testing remain free under federal law, private insurers are no longer willing to pick up out-of-pocket hospitalization costs, which can routinely amount to thousands of dollars, according to a recent study.

The change in policy represents a return to the pre-pandemic way of handling medical costs for the insurance industry. And it marks a dramatic shift from the first year-and-a-half of COVID, when insurers across the nation agreed to waive deductibles, copays and other costs for those sickened by the new coronavirus.

First of its kind website aims to provide resources about palliative care for kids

By Jill Macyshon, Alexandra Mae Jones: For Complete Post, click here…

When Carla Garrett’s son, Xavier, was diagnosed with a brain tumour as a baby, there were few resources to help her understand what it meant to navigate palliative care for a child.

Now, Garrett, along with other parents who have lost their children, care providers and medical experts, are launching a website designed to support parents going through the terrifying ordeal of caring for a child who may have limited time.

Garrett told CTV National News that when Xavier was diagnosed with an incurable tumour, it was difficult to understand what it all meant.

“It’s really hard to process that information,” Garrett said. “It just doesn’t sink in. And it really didn’t sink in for me until I had another mother explain all the supports we could get with paediatric palliative care, if we accepted the care.”

Xavier, who died a few years ago just shy of his eighth birthday, had a rare form of brain cancer which had survival rates just between five and 25 per cent.

His parents spent years travelling a painful and often lonely journey through the medical system in search of the best care for him — and they are far from alone. In Canada today, as many as eight thousand families are caring for a seriously ill or dying child.

The aim of this new website, is to provide those families with support that wasn’t accessible back when Xavier was first diagnosed.

Called ‘’, the website is the first of its kind for child palliative care, based off the model of the adult version for Canadian Virtual Hospice, which provides information and support on palliative care and advanced illness for adults.

ERs are now swamped with seriously ill patients — but many don’t even have COVID

By KATE WELLS: For Complete Post, click here…

Inside the emergency department at Sparrow Hospital in Lansing, Mich., staff members are struggling to care for patients who are showing up much sicker than they’ve ever seen.

Tiffani Dusang, the emergency room’s nursing director, practically vibrates with pent-up anxiety, looking at all the patients lying on a long line of stretchers pushed up against the beige walls of the hospital’s hallways. “It’s hard to watch,” she says in her warm Texan twang.

But there’s nothing she can do. The ER’s 72 rooms are already filled.

“I always feel very, very bad when I walk down the hallway and see that people are in pain or needing to sleep or needing quiet. But they have to be in the hallway with, as you can see, 10 or 15 people walking by every minute.”

It’s a stark contrast to where this emergency department — and thousands others — were at the start of the coronavirus pandemic. Except for initial hot spots like New York City, many ERs across the U.S. were often eerily empty in the spring of 2020. Terrified of contracting COVID-19, people who were sick with other things did their best to stay away from hospitals. Visits to emergency departments dropped to half their normal levels, according to the Epic Health Research Network, and didn’t fully rebound until the summer of 2021.

But now, they’re too full. Even in parts of the country where COVID-19 isn’t overwhelming the health system, patients are showing up to the ER sicker than they were before the pandemic, their diseases more advanced and in need of more complicated care.

Disability Visibility anthology for young readers

By Alice Wong: For Complete Post, click here…

Storytelling itself is an activity, not an object. Stories are the closest we can come to shared experience. . . Like all stories, they are most fundamentally a chance to ride around inside another head and be reminded that being who we are and where we are, and doing what we’re doing, is not the only possibility.

—Harriet McBryde Johnson, Too Late to Die Young: Nearly True Tales from a Life (2006)

I’ve loved reading ever since I was young. Books were my friends, and libraries were safe spaces where I felt like I belonged. During gym in elementary school, I would sit on the sidelines and read a book. No one seemed to notice, and that was just fine by me. Writers such as Judy Blume, Laurence Yep, Madeleine L’Engle, Beatrix Potter, and Beverly Cleary and their characters made life fun and exciting even though that wasn’t the case in real life.

Having had a physical disability from birth, I knew I was different from my classmates. It took me longer to get around when I walked; I fell and lost my balance easily, which made recess scary rather than a time for play. I had some friends, but I felt alone at the same time. There were many activities at school I couldn’t participate in, but I had an imagination that unlocked universes and showed me alternate realities where I could exist in new, daring, and unknown ways.

Fast forward to 2021. I am a forty-seven-year-old disabled writer, editor, and activist and a big-time troublemaker! Being middle-aged sounds ancient, but I am a total kid because so many things give me LIFE and I find deep joy doing what I want to do. I don’t think I’ve “made it” yet—I’m still figuring stuff out—but I can say for sure that my life got better. Two things helped me: telling my own story and finding my people.

National Long-Term Care Ombudsman Resource Center

From Resident’s Voice Door Hangers – Pack of 50 (10 of each design): For Complete Post, click here…

Long-term care consumers from across the country submitted artwork for this year’s Resident’s Voice Challenge, a part of Residents’ Rights Month held every October. Several pieces of art were selected to display on door hangers. These door hangers remind anyone who enters a resident’s room that this is their home and assert residents’ rights. The pack includes 50 door hangers (10 of each design), printed in sharp, full-color on sturdy card stock with glossy UV coating on one side.

Featured artwork by: Carole Luker in Fulton, KY; Matthew Blackwood in Okemah, OK; Residents at Hackensack Meridian Nursing & Rehabilitation in Ocean Grove, NJ; J. Wick in Fort Thomas, KY; and Residents at Waterview Hills in Purdys, NY.

Available for pre-order. Will ship in two weeks.

Why Do We Wake Around 3am and Dwell On Our Fears and Shortcomings?

From Neuroscience News: For Complete Post, click here…

ummary: Researchers investigate why many of us wake in the middle of the night and dwell on our fears.

Source: The Conversation

When I wake at 3am or so, I’m prone to picking on myself. And I know I’m not the only one who does this. A friend of mine calls 3am thoughts “barbed-wire thinking”, because you can get caught in it.

The thoughts are often distressing and punitive. Strikingly, these concerns vaporise in the daylight, proving that the 3am thinking was completely irrational and unproductive.

So, what’s going on?

I’m a psychology researcher with expertise in mood, sleep, and the circadian system (the internal clock regulating sleep). Here’s what the research says about what may be behind this common experience.

What’s happening in your body at 3am?

In a normal night’s sleep, our neurobiology reaches a turning point around 3 or 4am.

Core body temperature starts to rise, sleep drive is reducing (because we’ve had a chunk of sleep), secretion of melatonin (the sleep hormone) has peaked, and levels of cortisol (a stress hormone) are increasing as the body prepares to launch us into the day.

Remarkably, all this activity happens independent of cues from the environment such as dawn light – nature decided long ago that sunrise and sunset are so important that they must be predicted (hence the circadian system).

We actually wake up many times each night, and light sleep is more common in the second half of the night. When sleep is going well for us, we are simply unaware of these awakenings. But add a bit of stress and there is a good chance that waking will become a fully self-aware state.

It’s Time the Behavioral Health Field Expand Their Definition of Lived Experience

From #CrisisTalk: For Complete Post, click here…

In anticipation of 988—the three-digit number for mental health, substance use, and suicidal crisis telecom companies must make live by July 16, 2022—communities throughout the United States are examining their crisis systems. “They want to ensure there are rapid and appropriate responses in place that match people’s needs,” says Amy Watson, Ph.D., professor of social work in the Helen Bader School of Social Welfare at the University of Wisconsin. She’s also the president of CIT International. The Crisis Intervention Team model is a first-responder, police-based crisis intervention designed to reduce the role of law enforcement in behavioral health crisis response. 

However, as leaders tighten their lens on behavioral health and quality of life crises in their community, there’s a glaring concern they must also simultaneously address: workforce shortages. Dr. Watson says the solution isn’t simply to increase staff in existing positions but rather to develop a community behavioral health crisis responder role. “That means identifying the skills needed to best resolve crises,” she notes, “and make sure there’s an accessible career path for people with a diversity of lived experience.” 

In behavioral health, the term “lived experience” is often synonymous with people who have faced mental health or substance use challenges. “That’s a vital but narrow perspective,” says Dr. Watson. “There are many additional experiences—like being from a disadvantaged or marginalized population—that would be valuable to this role and can help provide a better, more culturally competent crisis response.” This includes the need for crisis responders who are Black, Hispanic, American Indian, have been incarcerated, experienced houselessness, identity as LGBTQ, are veterans, or have developmental disabilities.

Non-law enforcement responses to behavioral health and quality of life concerns—like the need for food and shelter—are critical for diverting people from the emergency department and jail. And because interactions are with civilian responders and not police, it can be far safer for people in crisis, especially among marginalized populations at risk of a police interaction turning deadly. Of people killed in the United States by a police officer in the line of duty since January 1, 2015, 24% were Black, 16% were Hispanic, and 23% were identified as having a mental illness.