ashbet: (Secret)
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



ashbet: (Abigor)
Not a surprise, but I'm glad that physicians are talking about this -- might lead to better treatment of EDS pain.

(I have peripheral neuropathy and trigeminal neuralgia, and was aware that EDS is linked to neuropathy of various kinds, but the mechanism is poorly-understood.)

http://www.medscape.com/viewarticle/869008?nlid=109626_865&src=WNL_mdplsfeat_161004_mscpedit_rheu&uac=78921BX&spon=27&impID=1209176&faf=1

[Public and shareable]
ashbet: (Abigor)
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*
ashbet: (Abigor)
Originally posted by [livejournal.com profile] shinga here.

So I know there are people talking "behind my back" (probably not in a purposefully mean way, just talking) about the fact that I post a lot or "too much" or whatever on FB.

Well, to those people...

Deal with it.

I don't have a workplace. I don't have the option to drive and go out during the day. I don't have SOCIALIZATION. If friends can come over, they do, but my friends have busy lives and it's a rarity. I have Will but he works all day and has his own social obligations outside the house.

I do not talk to anyone, all day. Facebook is my way to keep in contact with friends, with the world. It's one of the only ways I can share my life with them and vice versa.

So get the fuck over it and unfollow me if my frequent posts are so annoying to you... if you find me "pathetic" for being too disabled to find some other social outlet besides social media.

I won't miss you.


* * *



I shared [livejournal.com profile] shinga's post on FB (she had originally written on FB, but was generously willing to post it as a public LJ entry to make it easier to reblog), and one of my friends said (very kindly!) that I didn't need to justify or defend, and that I had the right to speak my truth and have my friends stick with me.

I started to write a response, and, well . . . it wound up being fairly long and passionate.

I'm sharing it here, and making it public, because it means so much to have friends who *do* listen, and who will stand up for me when others use silencing tactics to try and shut me up.

* * *

Just to be clear, I wasn't feeling defensive, I was sharing the words of a friend because they resonated with me.

This IS my life that I talk about, here and on LJ. It's not "dwelling on negativity" or "TMI" or "identifying with my illness" to say, hey, I deal with a lot of medical stuff in my day-to-day existence.

And being disabled does kinda suck, even before you add the terrifying financial uncertainties and realities, the lack of human dignity when dealing with the leaky mesh of the supposed social safety net, and the dependence that the system creates on getting insurance through an able-bodied partner, rather than being ALLOWED to purchase it on our own.

It's not my WHOLE life -- there's a lot more to me than EDS -- but I don't ever get a single day's vacation from living with this disease, and I don't have the ability to just overpower it with the strength of my will, or else I'd have done it by now.

Every day, I overcome.

As I was just saying to a friend who is dealing with a life-altering diagnosis and a terrifying prognosis -- sometimes, I'm riding the tiger. And sometimes the tiger is riding me.

But I don't stop fighting to get on top, I do my best not to surrender to despair (and if I do fall into that pit, I keep clawing my way out again.) I've lived with this long enough, and made those changes, and forced myself to accept repeated "new realities" that are different from my hopes and aspirations . . . because I know that I can get back on top of that fucking tiger.

And when I'm riding it, instead of it riding me, I have the capacity to find joy in my life.

I can love fiercely, I can stay loyal and faithful to my friends and loved ones, I can do amazing things, even if they're different from what I accomplished before.

They're not less. *I'm* not less.

And that's how I keep fighting, when the tiger is riding me -- I know it's a cycle. And I can get on top again.

But I need friends who can love and respect me *while* I talk about these things, *while* I grieve for my losses, as well as celebrating my triumphs and the things and people that bring me joy.

I can still help people. Tonight, I started work on helping a friend with no insurance to get access to the meds she needs.

It's something I know how to do. It's something I can give.

And that's the kind of thing that I want and need the space to share, too.

*YOU GUYS* are fucking awesome. The friends who stayed with me, and the friends who joined me along this journey -- you are literal lifesavers, and I love you all.

But I've also heard all those hurtful things that Amanda talks about, sometimes from people I thought would understand, people who I'd been there for.

Having this space to express myself means so much to me -- but it's important for everyone to know that *every* person who opens up about their disability or pain or chronic illness -- we have all had people try to silence us, because our stories make some people in our lives uncomfortable.

Sometimes, it's someone as close and trusted as a partner, a parent, a child, a best friend.

So -- when you listen to me, and you still care, and you don't disengage or bitch behind my back about how I won't shut up about my boring struggle with disability -- you're counteracting those silencers, healing those betrayals.

You're making me (and everyone else fighting this same battle) remember that we didn't lose our humanity by acquiring (or being born with) an illness or disability.

You matter, so very much.

Thank you. <3
ashbet: (Abigor)
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 )
ashbet: (Abigor)
FYI for headache/migraine/facial-pain patients -- Red Lawhern has been a tireless advocate for people with trigeminal neuralgia, and the show will likely apply to others with rare diseases and pain disorders, who are often abused by the medical system:

Dear friends,
I have been invited to interview online with Dr. Peter Breggin, MD, from 4-5 pm eastern time on August 6th. Dr. Breggin is a prominent critic of mainstream psychiatry and the excesses and dangers of psycho-active drugs. The hour will revolve around my September 2013 editorial published on Mad in America and re-published on the Rxisk blog of Dr. David Healy, MD. "It's NOT All In Your Head" [http://www.madinamerica.com/2013/10/head/] speaks to the abuses suffered by chronic pain patients and others with rare medical disorders who have been written off as "head cases" by medical doctors who have failed to understand, diagnose, or treat their real medical disorders.
The program will be available live via Progressive Radio Network on the internet at: http://www.prn.fm/ . It will not be broadcast by conventional radio.
Following the program, it will also be archived here as well as on prn.fm : http://drpeterbregginshow.podbean.com/
All are welcome
Sincerely,
Red Lawhern, Ph.D.


* * * An excerpt from the linked Mad in America article * * *

In the volunteer work that I do with pain patients these days, I’ve taken time to ask them about their experiences with medical doctors who referred them for mental health evaluation for symptoms that the doctor couldn’t put a disease name to. In an alarming number of cases, females among this population are written off as “hysterical” — a common rejection or shunning that is quite well established as an issue in both lay and professional literature. The same kinds of referral also occur with men, but significantly less often. For many patients, a better course of treatment emerges later with a different doctor who finally recognizes what is going on after several others have missed the diagnosis. For some, the light never appears at the end of the tunnel. Suicide is a real risk among those who have been told “it’s all in your head.”

The term “hysteria” casts a long shadow over issues of chronic pain. The contemporary roots of the term go back to a French neurologist named Charcot and to one of his students, Sigmund Freud. In my studied opinion, Freud’s theory of “female hysteria” is one of the most widely accepted mythologies ever invented out of thin air and academic surmise. Professionals who regard themselves as learned have invented an entire field of psychological practice around the term. We call that field psychosomatic medicine, and politely ignore the reality that its practitioners are rarely able to help their patients get better in any consistent way.


http://www.madinamerica.com/2013/10/head/
ashbet: (Abigor)
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)

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