ashbet: (Lacrimosa 2)
 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.
We need to raise $3,648 for her first infusion, and we haven't gotten the final bill for the bone-marrow biopsy yet.  Any extra funds will go to pay for her outstanding neurology bill, so that she can continue to receive injections for migraines every 90 days.
Please boost the signal far and wide, every bit helps!
Thank you so much <3

(Public, shareable post.)
ashbet: (Default)
Trying to remove a bunch of inactive journals from my FL, because Dreamwidth keeps choking on my import, and I'm now having to manually reset my FL over there for the second time in a few months.

I very likely may misclick somebody, so if you suddenly can't see my entries, PLEASE poke me here and I'll re-add you! <3
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: (Lacrimosa 2)
Originally posted by [ profile] kshandra at #TheResistance
Senator-Elect Kamala Harris asked her consituency for our priorities in the coming years. If you're a resident of California, you can fill out the survey here:

A friend shared his responses, and they were so well-thought-out I used them to frame my own.

As a member of a sexual minority, married to a disabled man, my first and most important priorities are as follows:

  1. Single-payer health care in this state, if not nationwide.
  2. Protections for the LGBTQ community in health care, housing, jobs, parental rights, and education.
  3. Protections for Muslims, Jews, and other religious minorities in freedom of worship and speech, housing, jobs, and education.
  4. Protections for all persons of color, regardless of immigration status, in freedom of speech and assembly, health care, housing, jobs, and education.

I realize this is a lot to ask for, particularly of a first-term senator. But if these issues aren't addressed, many people I love and care about - my husband, my family, my friends and colleagues - will be in grave danger.

This entry was originally posted at Feel free to comment in either location.

DW issues

Jan. 2nd, 2017 11:14 am
ashbet: (Default)
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*
ashbet: (Bastian 2015)
Originally posted by [ profile] jola at buy some perfume, save a kitty
crossposted to Tumblr for easy sharing

Perfumer (and long time friend) Astrid of Blooddrop is having a fundraiser perfume for a kitten that was dumped on her doorstep - kitty needs de-worming, spay and vaccines. Fundraiser is here: For $25 + shipping you get to help this adorable little kitten *and* get a wonderful bottle of perfume for yourself or someone you like "Her perfume is sweetened milk, rice flower, soft sandalwood, vanilla musk, peony, osmanthus, and a little perky blend of sweet citruses". If you live in or near Michigan and looking for a kitten this one will eventually need a forever home!

Any sort of signal boosting is really very appreciated if you would like to help but cannot afford to or you hate perfume (monster!! lol). Astrid already has tons of animals and just cannot financially handle the costs of one more, especially now w/ the holidays and trying to replace her beloved horse that recently passed away. This is a lovely fundraiser and i hope it gets some attention.

... also the perfume sounds pretty damn boss and i purchased one!
ashbet: (Bastian 2015)
Originally posted by [ profile] praxedes_osaka at Gatlinburg Fire Update Signal-Boost
There are plenty of organizations who are working to help those who have been displaced by the fires in Sevier County, obviously, but the Sevier County Humane Society had to be evacuated last night, and numerous animals are going to be impacted by the loss of property and the ongoing evacuations in the Gatlinburg area.

The Knoxville-area Humane Society has started a crowd-funding for the Sevier County Humane Society.

Sevier County Humane Society Fire Relief

More info )
ashbet: (Angel of Death 2)

How to call your reps when you have social anxiety (but the info is good for everyone, and there are scripts and contact pages and good links in here, so this is relevant even for people who have no issues with using the phone.)

* * * Here's what I wrote when I posted this elsewhere:

FWIW, I'm one of the people who will lose healthcare access if Trump repeals the ACA, as is my daughter.

Please speak up about the need for a national healthcare program, rather than a state-by-state patchwork of states that refused or accepted the ACA Medicaid expansion.

We're in a really bad situation here -- we can't afford to just move, we have secure housing in Texas, and there's no guarantee that another state would be better, if the ACA is repealed.

There are a lot of other issues that everyone should be contacting their representatives about (especially discrimination against LGBT people, people of color, and immigrants), and I hope you are doing so . . . but please give a moment of thought and a few words to the plight of disabled and/or chronically-ill people, as well.

Thanks so much <3

[Public, shareable]
ashbet: (Andi + Kira October 2016)
Concrete guide and excellent scripts to use when confronting bigotry and working to open the minds of potential allies. Good stuff!!

"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]
ashbet: (Ashbet)
My amazing friend Kali is working on an idea that might be able to provide direct help to vulnerable people most affected by the new administration:

"I have mentioned in a couple places that I am thinking about trying to put together something inspired by the Underground Railroad to help our LGBT community and (if the ACA falls) disabled folks relocate to more hospitable states. Whenever things get ugly, a lot of privileged liberals ask, "Why don't they just move?" They don't understand that for the most vulnerable folks, 'just move' somewhere safer feels about as likely to happen as 'just move' to the moon.

My plan has 3 key parts. First, we need a network of waystations, people who will give the people we're helping somewhere to stay for the night. Second, we need places for the people we're helping to stay in liberal areas while they get hooked up with social services (if appropriate) and find places to live. Third, it's going to take money and resources to run this all - gas cards, frequent flyer miles, any rental or moving companies that would work with us, relationships with motel chains or restaurant chains or gas chains that might give us discounts, money to help with deposits on new places to live, anything and everything we can use to help make moves easier.

If I'm going to do this, I guess I'll have to put together a nonprofit for this purpose. I'm tentatively calling this entity Come Home Safe. Obviously, I can't do this alone. Even if I was healthy, there's so much to do! So I figured I would ask if any of my friends would be interested in joining me to put this together."


There's more, if you click through. I'm absolutely willing to serve as a Texas waystation, although my own finances are such that I could provide a bed and food, but not financial donations at this time. Still, if people who can't provide housing are willing to kick in to help fund the movement, I think this is something that could really help people in need directly.

Please comment on Kali's post, so that she can get notified of the responses.

(BTW, she does have a legal background, and has worked for legal nonprofits in the past, so she's not just a layperson offering to set something like this up -- she does have relevant contacts and experience in the field.)

It's not a one-person job -- she has the same genetic disorder that I do, so spoons are limited -- but she's someone I'd trust to bring this movement to life :)

[Public, shareable]
ashbet: (Bastian 2)
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: )
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.)

[Public and shareable]
ashbet: (Andi + Kira New_2016_3)
Originally posted by [ profile] ext_3730619 at post

If you are a band, DJ or have a special talent to offer CONVERGENCE 23 DALLAS, submissions are now OPEN!
Local – National – International
The submissions period for bands is between September 20, 2016 – October 20, 2016. The submissions period for DJ’s and other talent is between September 20, 2016 – November 20, 2016.
Enter here:
This will be the first time Convergence has come to Dallas. Please help us make this an unforgettable event by sharing this post with your friends.
Thanks! :)
ashbet: (Bastian 2013)
URGENT - DFW-area people, please signal-boost! These sweet kitties need homes ASAP!

If there is anything I can do to help them get to new owners, just ask -- I can pick up, drive, etc.

I'd foster them myself, but my own kitties' health needs make that impossible -- but I really hope they can find loving homes!

They are about 3 month old (litterbox trained and all), and really are in desperate need of a home. My apartment won’t allow us to keep them, and I really don’t want them to end up in a shelter or on the streets. They are by far some of the most intelligent, most playful, and most loving kittens I have ever seen in my life. They are very sociable and would do well with other pets and/or children.

There are 2 females and 2 males.

The first two pictures are of Jett, a calico female with green eyes. The second two are of Dio, a white, brown, tan, and golden male tabby with blue eyes. The next are of Jagger, a tan and brown male tabby with grey blue eyes. And the last two are of Rose, a pale calico/tabby female with bright blue eyes.

More details about each kitten on the Tumblr post!!

[Public entry, feel free to reblog]
ashbet: (IntenseEyes)

Ryan is a close friend of my lovely friend [ profile] 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.
ashbet: (Abigor)
As part of the "control group" (living in a state that opted-out of accepting ACA funds for Medicaid expansion), these results do not surprise me.

I very much wish that every US citizen had the benefit of this law and program, rather than having harsh geographical inequalities.

"Extension of Medicaid eligibility under the Affordable Care Act (ACA) has not only shielded low-income Americans from out-of-pocket medical costs, but has also improved their overall financial health."

-- National Bureau of Economic Research
ashbet: (Abigor)

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.

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.

*Please feel free to share/signal-boost*
ashbet: (Lacrimosa 2)

Please help my friend [ profile] alumiere pay for the pain meds that DON'T make her vomit -- she's below 95 pounds now, and struggling to get pain control.

The manufacturer discontinued their Patient Assistance Program, and she is really struggling to keep her weight at a level where she can function.

More details are here -- she also has items up for sale to try and raise money:

Please help if you can, and signal-boost regardless -- thanks so much <3
ashbet: (Angel of Death)
Originally posted by [ profile] nonnycat at [unfiltered] Trans woman needs temporary housing in Boulder/Denver ASAP
My friend "Kit" is a trans woman in dire need of temporary housing. She is recovering from complications of major surgery, along with a "surprise" blood clot. Just as she got back on her feet, she was let go in a round of company lay-offs earlier this month.

Kit has to be out of her current residence by May 9th. She has a rental lined up to move into June 1st, but she has nowhere else to go during the time between. As a trans woman, options like homeless shelters are extremely dangerous and not an option.

This is why I'm asking for help. Kit needs a queer/trans-friendly place to crash between May 9th and June 1st. She has money to cover food for herself and other personal necessities during her stay.

Other things of note: Kit has no pets and is severely allergic to cats. She is also allergic to cigarette smoke, which causes breathing issues and migraines -- but, she's noticed she's okay if people smoke outside. She's 420-friendly.

Kit has no special requirements when it comes to sleeping arrangements; she's fine with a bed, a couch, or even a sleeping bag on the floor. The WiFi password so she can job hunt on her laptop would be great, too. ;)

Kit lives in the Denver/Boulder/Longmont area.

If anybody is able to assist with space for her to get on her feet again, please contact Kit at

Thanks all! Please signal boost!

This entry was originally posted at Please comment there using OpenID.
ashbet: (Abigor)
Originally posted by [ 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 [ 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

August 2018

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