ashbet

 Hey, guys -- after yet another coverage denial, and no clear path forward for our appeals (we're pursuing multiple avenues, but nothing is guaranteed, and Kira can't just wait indefinitely for treatment), I'm starting a GoFundMe.
https://www.gofundme.com/help-kira-get-feraheme-infusions


(Public, shareable post.)

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

When I backed up my LJ, DW unfortunately tried to import my entire LJ friendslist (which is good, in some ways -- but most of those people don't have DW accounts), and that's why I'm running into the "can't have more than 1000 accounts in your circles" error that prevents me from adding anyone new.

(Also, TBH, I'd be leery of switching to a service that tops out the number of friends you can add, bc I do have quite a few people on my LJ, and am happy to keep it that way -- some stuff just gets filtered a little more tightly, if necessary.)

Ugh, it's going to be *fun* trying to figure out which of those 982 "DW friends" listed actually even have DW accounts under the same name!

So, I'm about to do a mass unfriending and then start adding people back -- I've taken a screenshot of my few friends who I'd already added as DW accounts, so if you see yourself removed and re-added, that's why.

*rubs temples crankily*

Originally posted by praxedes_osaka at Gatlinburg Fire Update Signal-Boost

Concrete guide and excellent scripts to use when confronting bigotry and working to open the minds of potential allies. Good stuff!!

https://captainawkward.com/2016/11/21/guest-post-a-post-election-guide-to-changing-hearts-and-minds/

"Many of us are grappling with how to use our skills and influence to resist the upcoming Trump administration and the hatred and violence that it inspires. As Captain Awkward readers, we’ve been practicing setting boundaries, standing up for our values, and making it awkward for the right person. We are uniquely prepared for a crucial part of the next few months or years: changing the minds of people who support the Trump administration, and standing up to the abusers they are empowering. This post teaches scripts and techniques to do these two tasks, along with the theory behind them. It’s for people living in the U.S., but it may be useful to people living elsewhere as well."

[Public & shareable]

Signal-boosting for my friend Trish -- if you have any questions, contact info is in the text. Please repost to help two DFW-area kitties who need new homes!

>>>I have been pet sitting for two wonderful cats who, unfortunately, are in need of a new home or homes. They are both sweet cats with very different personalities, so I will write each up by itself. They CAN go to different homes since they are not bonded to one another.

Rose : Rose is a very sweet, small kitty around 4 years old. She is spayed. She's the most gorgeous cream with light orange markings and crystal blue eyes. She has a little bump on her nose that has always been there, and it adds to her character. We often called her squeaker, because she has this soft squeaky little meow. Once she warmed up after a few days, she slept with me on the bed every night. She's a little lap cat!

Sky : I had been told Sky was 'aloof', but once she gave us a few days, she became an attention HOG! She is also spayed, and is a tabby with beautiful green eyes. She is around 6 years old. Sky would probably do best as a single pet, or at least single cat. For the first week, if she felt threatened (by another animal or by being unsure what you were doing), she would lunge and swat at you (claws not out) as a warning. Now that she feels more secure and we are used to what she likes and doesn't, that rarely happens (this is our 2nd week sitting for them). She purrs like a machine, rubs against you, and even gives kisses. She isn't exactly a lap cat, but at night if there are no other cats on the bed, she will come sleep next to you. She loves to be around people.

If you are interested in either of these cats, feel free to contact Al and Donna Baron, who run the Plano Pets Are Inn business, at 972-424-8400 so they can arrange things.

Please open your hearts and homes to these sweet kitties! Believe me, if my husband would allow us to have more animals at least one would be staying with us. It's not an option for us, but a great opportunity for you!





( More pics: )

Originally posted by ext_3730619 at post

https://www.gofundme.com/2jw2jj8

Ryan is a close friend of my lovely friend kittytoes, and he could really use some help right now with the costs of cancer treatment. Please donate if you can, and/or boost the signal -- both are really helpful!

Thanks, everyone! <3

* * *



If you know me, then chances are excellent that you know Ryan. He's every member of my family's best friend. He's wonderful and funny and amazing and right now he's got some things on his plate. In April, he was diagnosed with stage 4 nodular lymphocyte predominant Hodgkin lymphoma. Though stage 4 anything is terrifying, this type of cancer is very treatable and, in fact, Ryan is nearly through with what he hopes is the last of his chemo, with radiation therapy to follow. But here's where it gets tricky. Ryan was a research coordinator and has been on medical leave. However, the study he was working on has ended and his leave benefits will expire, so he will soon be unemployed. He is not quite done with treatment nor has he been cleared to work. (He's been handling chemo like a champ! But the multiple meds make him unpredictably nauseous and tired. He also has radiation therapy coming up for a spinal mass that currently makes it difficult to walk, stand, or sit for long periods of time.) He will face a gap in coverage before the end of his treatment and the beginning of his next job.

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*

Originally posted by nonnycat at [unfiltered] Trans woman needs temporary housing in Boulder/Denver ASAP