ashbet

Since DW is taking a while to catch up on my archived entries:

I was in the ER on Monday morning, with what turned out to be a kidney infection. Also picked up a respiratory infection while I was there.

On Tuesday, I took these photos/wrote this post for Facebook, because I felt like it was important -- forgive my semi-feverish rambling, but so many people with invisible illnesses really struggle to be *seen*, so I thought this might help a little bit.

* * *

"But you don't look sick!" is one of the most frustrating phrases to hear, if you're a person who lives with with invisible illness or chronic pain.

Posting these as a direct example -- when you deal with pain and other symptoms every day, many people learn how to cover it up really, really well. But the act of doing so doesn't mean that they aren't genuinely ill.

I'm fighting a combination of kidney infection and respiratory infection in these photos, in addition to Ehlers-Danlos and its myriad bullshit comorbid conditions. I have a fever, and I'm getting hit by the leading edge of a migraine coming on. I feel like death warmed over.

But I *had* to leave the house to take Kira to her eye appointment (they were dilating her eyes, so she couldn't drive), and I chose to look cute and put on makeup because I had a Skype date with Cav planned for this morning, which I was very happy and excited about -- the smile is perfectly genuine!

(FWIW, yesterday, I looked *fucking awful* -- the IV antibiotics and pain meds helped immensely.)

So -- when someone tells you that they're in pain or dealing with an invisible illness... don't judge by appearances, and realize that someone who made an effort today may have only been able to put on pants and leave the house one day this week, so you're seeing them at their best.

(You guys are amazing, and I'm not pointing this at anyone -- but I've dealt with disbelief and dismissal even within my family of origin, and with doctors who couldn't be bothered to deal with a complex patient or a rare disease... and that's an incredibly common experience for people with invisible illnesses -- it happens to almost all of us.)

Thanks for listening -- this is a difficult and painful issue for so many people, and I thought a demonstration might be useful.

On a lighter note, check out Nurse Zuul keeping me company on the pillow in bed <3

http://www.medscape.com/viewarticle/868127

Medscape Medical News
US Health System Failing America's Sickest Adults

Megan Brooks
August 30, 2016

Twelve million US adults have three or more chronic illnesses plus a functional limitation that makes it tough to perform basic activities of daily living, and the US health system is not meeting their needs, according to new research from the Commonwealth Fund.

"The sickest patients have the highest medical spending but cannot reliably get the healthcare they need, even though they have insurance," Commonwealth Fund President David Blumenthal, MD, said in a news release.

"This is a sign that our healthcare system is failing its most vulnerable patients. Helping patients with the greatest needs should be among the very highest priorities for efforts to improve our current system," he said.

"We have known for a long time that there are very sick patients facing challenges in daily living and that our healthcare system has to do a better job of caring for them," added coauthor Melinda Abrams, Commonwealth Fund vice president for delivery system reform.

"This research shows us who they are, what their needs are, and how the system is, or isn't, working for them right now. This gives us a clearer picture of how to help them get and afford the care they need, so they're able to live their lives to the fullest extent possible," Abrams said.

Using nationally representative data from the 2009-2011 Medicare Expenditure Panel Survey, the researchers found that 1 in 20 Americans (5%) aged 18 years and older living in the community (or about 12 million people) suffer three or more chronic illnesses in addition to having a functional impairment.

Patterns of healthcare use and spending for this "high-need" group differ from those of other adults, including the 79 million with three or more chronic illnesses but no functional limitation, the researchers report.

For example, for high-need adults, average yearly per-person spending on healthcare services and prescription drugs is nearly three times the average for adults with multiple chronic diseases only (no limitations) and more than four times the average for all US adults.

High-need adults spend more than twice as much on average on out-of-pocket expenses as adults in the total population, yet their annual median household income is less than half that of the overall population. Out-of-pocket spending for adults with multiple chronic diseases and no functional limitation is about a third less than that of high-need adults, and their annual median income is about the same as adults in the overall population.

Table. High-Need Adults Have Higher Healthcare Spending and Out-of-Pocket Costs



"We are asking the sickest people to pay the most, when they have the lowest incomes," coauthor Gerard Anderson, PhD, a professor at Johns Hopkins Bloomberg School of Public Health, said in the news release.

The report also notes that 20% of high-need adults went without or delayed receiving needed medical care or prescription medication in the past year, compared to just 8% of all Americans.

According to the authors, more than half of high-need adults are older than age 65, and nearly two thirds are women. They are also less educated than US adults overall and are more likely to be white, low-income, and publicly insured.

Improving Care for High-Need Patients

A separate report released today by the Commonwealth Fund looks at health system performance for high-need patients and finds significant room for improvement.

For example, it notes that the vast majority of high-need adults (96%) have some kind of health insurance, but that doesn't always guarantee access to care.

Thirty-two percent of high-need adults with private insurance have unmet medical needs, as do 28% of those with Medicaid, 15% of those with Medicare, and 14% of those with both Medicare and Medicaid. High-need Medicaid beneficiaries have a harder time getting referrals to specialists compared to high-need Medicare beneficiaries or individuals with private insurance, the report notes.

The authors say that efforts to improve healthcare and rein in costs have centered on patients with multiple chronic illnesses, and they say even more priority should be given to people with multiple chronic conditions and functional limitations.

"The health care system needs to work better for the highest-need, most-complex patients. This study's findings highlight the importance of tailoring interventions to address their needs," the authors write.

Specifically, they recommend that private insurers consider how benefits and provider networks can be improved to help high-need enrollees. State policy makers should consider how to ensure that high-need adults enrolled in Medicaid are able to access needed specialty care, they advise. Also, initiatives that seek to improve care for high-need patients should target those most apt to benefit and tailor programs to their unique characteristics and needs.

The Commonwealth Fund. "High-Need, High-Cost Patients: Who Are They and How Do They Use Health Care?" Published August 29, 2016.

http://www.commonwealthfund.org/publications/issue-briefs/2016/aug/high-need-high-cost-patients-meps1

The Commonwealth Fund. "Health System Performance for the High-Need Patient: A Look at Access to Care and Patient Care Experiences." Published August 29, 2016.

http://www.commonwealthfund.org/publications/issue-briefs/2016/aug/high-need-high-cost-patients-meps2


*Please feel free to share/signal-boost*

Given that concerns about "opioid-induced hyperalgesia" are one of the drivers behing legislation and medical-policy decisions that affect pain patients, it's important to be aware that it *has never actually been proven to exist in humans*, and that rodent studies should not be extrapolated to a patient population without, you know, *actual research on human subjects.*


***

"Complexities of Opioid-Induced Hyperalgesia Poorly Understood"

NATIONAL HARBOR, MD — Opioid-induced hyperalgesia is among the most pressing concerns in the national discussion of opioid addiction, underscored by the US Food and Drug Administration's (FDA) call for clinical trials to better understand the risks, but the issue is mired in more complexities and confusion than many may even realize, an expert says.

( More )

http://m.washingtonpost.com/national/health-science/when-flexible-becomes-too-flexible/2014/03/07/4d669e30-69c5-11e3-ae56-22de072140a2_story.html

Wow -- reading this was a punch to the sternum.

It's sometimes hard to read about other people's journeys with EDS, especially if they got earlier interventions that have helped them significantly, rather than spending decades without knowing that all of their "disparate" conditions shared the same underlying cause, as I did. (Glad that they're getting help, though. Just wish that someone had referred me to Dr. H while I was still living in MD -- I might be better-off now.)

#eds #ehlersdanlos #ehlersdanlossyndrome #hypermobility #raredisease

(including hashtags for ease of reposting)