WOKE AF and What the Neurologist Says

Today was our quarterly visit with The Neurologist.  This is generally something I prepare for by downing three Bloody Marys and a chaser of frozen vodka (see the other 4,321,896 posts I've written on the subject. They generally begin with a photo of the waiting room wall with the CONQUER and TRIUMPH sign over the list of wealthy donors), but I'm not going to complain today because -- you know -- I'm grateful.

We've got health insurance (for now) and The Neurologist is very helpful as far as getting those pesky pre-authorizations that Anthem demands every month for the drug that Sophie has been on for EIGHT YEARS. When the Fresh-faced Pharmacist of the Month rings me up at the CVS, he inevitably asks me do you realize how expensive this medication is? And I say I do but tell me again how much it costs. And the young man says, Today it's $435. And I say that should be covered by insurance. And he says, Well, it needs a pre-authorization. And I say, Again?We've been getting this medication for eight years! And he says, It's a controlled substance, ma'am. And I say, Yes, I know that but I'm trying to grift the system here and keep the drug wars going by having benzo parties with all my friends. And he says, May I see your ID? Reader, I'll leave it up to you to discern which of those were alternative facts and which were the real thing, but I have digressed from my point that The Neurologist always helps me with The System and for that I am exceedingly grateful.

I'm also not going to complain about today's visit with The Neurologist because Sophie has been seizure free for more than three weeks. Yes. We have found the sweet spot, I guess, at least for now. I figure I can cover any jinxes by readily acknowledging that we might have a downturn at any moment. Downturns and rebounds are equal opportunity dictators.

I posted this picture of Sophie on Facebook this afternoon, and my feed literally exploded. Everyone is, of course, thrilled that Sophie is doing so well and many asked why? Here's why, I think, at least for now: Sophie was overmedicated on Onfi (the benzo that needs the pre-authorization) and the CBD. We know that CBD can jack up levels of Onfi, so when Dr. Bonni (Sophie's cannabis doctor who recently published a great book all about cannabis medicine that you can order on Amazon) suggested we decrease either the Onfi or the CBD to see if she responded, I naturally chose to decrease the Onfi. Faithful readers might remember that we jacked up the Onfi back in the fall when we spent six hideous days in the hospital ripping off the Vimpat, and I guess after a month or so her levels of Onfi were enough to put her in what I thought was an overall DECLINE. I was scared, ya'll and also resigned to -- well -- you know.

To make a long story short, I took away some Onfi and do you know that Sophie perked up? She more than perked up, actually. She is WOKE. She is rowdy. She is ready to fight with the rest of us against those who would stand in our way (we're talking about you Drumpf, and you Sessions and you Price and you DeVos and all of you who condone and support them and their retro policies that will hurt her and tens of thousands like her). She is not having seizures. She takes Onfi twice a day, CBD twice a day and THC once a day.

I'm here to blow your mind

Speaking of being WOKE, what did The Neurologist say? She was thrilled that Sophie is doing well and took care of my pre-authorization needs, but she also had a few choice words to say about the current clusterf**k that is our country. She was walking out the door, scribbling on a pad, but she said, I will NOT be here if the ACA is repealed and we go back to the Dark Ages before it when I had patients begging me not to write diagnoses in their charts. I think she kept muttering that all the way down the hall before she disappeared around the corner.



WOKE AF
#resist

Saturday Resistance -- Hear Me Out If You Care About Sophie and People Like Her

I take care of Sophie at home with the help of her father and a part-time babysitter because of a Medicaid waiver that she qualifies for given her cognitive and physical disabilities.She has been "deemed" a person "qualifying" of "institutional care." I am basically paid to take care of her at home, saving the government -- taxpayers -- a considerable amount of money to care for her in an institution. Those are the bald facts. We are, in a capitalist society, reduced always to a number. It saves you money to honor this social contract.

If the Affordable Care Act is repealed, this ability to care for Sophie will be severely compromised. Please read the following email that I've cut and pasted in full to learn more about what's going on for America's disabled and chronically ill.

If you can, lend your voices to the resistance.

I know many of you reading this blog are conservative voters who live in states that are gung-ho bent on destroying the Affordable Care Act. Perhaps you don't realize that despite its imperfections, it has also lent stability to millions of families like mine. Yes, we do struggle with rising premiums. We do struggle with the systematic denial of medical claims. We struggle with the ungodly amounts of money charged for pharmaceutical drugs. I am paid minimum wage to care for her at home, an amount far inferior to that which I might earn in a full-time career. I also struggle to care for Sophie without going insane, to tell you the truth, because it's just brutally hard to do what we do every single day for decades. Sophie's recent 5-day hospitalization cost more than $150,000. That would have bankrupted us if not for the Affordable Care Act and her Medicaid waiver, and I live in a grotesquely over-priced tiny bungalow in an economically rich neighborhood in Los Angeles. I have family that helps me to pay for relief, too. Unlike most people in similar circumstances, I have enough money to get therapy to help me to deal with the caregiving, with the constant stress of seizures, with the possibility of Sophie dying before me or dying afterward.

I'm telling you this to emphasize just how life-altering it was when the Affordable Care Act passed, even with all of its absurd complexity and kow-towing to the big insurance companies. The pre-existing conditions component, the lifetime maximum component, the preventive care component, the birth control component -- shall I go on? Our family was careening toward serious financial difficulties and running the risk of going uninsured before the Affordable Care Act was passed. Sure, we might have been "saved" by family, we might have taken the risk to have no insurance at all. I don't know. What I do know -- again -- is that I have plenty of resources, both financial and emotional and that many, if not most, of my fellow caregivers, their children and families, do not. So I'm advocating for them, really, far more than myself.

Even if none of this comes to pass, if the draconian machinations of Eddie Munster, Drumpf et al come to nothing, if the "replacement" even happens, the psychological distress that many of us are feeling right now is really difficult to convey without sounding whiny, maybe, or privileged. Then I remember what the hell we've all been doing, how much we fought for the ACA to begin with and how we have to do it all over again, even as we continue to advocate for and keep our children ALIVE.

If you can, lend your voices to the resistance.

Read this:

ICYMI: ANCOR Urges Congress to

Protect HCBS as Changes Begin

 

Alexandria, VA – Yesterday, the 115^th Congress approved a budget resolution that sets the stage for the repeal and replacement of the Affordable Care Act (ACA), and allows for changes to the Medicaid program. In response to this action, ANCOR responded with a statement urging Congress to protect the HCBS Medicaid program, and to consider the widespread effects any alterations to the ACA and Medicaid would bring about for people with intellectual and developmental disabilities, and their loved ones.

 

ANCOR has also alerted its members – community service providers to people with intellectual and developmental disabilities – about the vote, and encouraged them to relay these consequences to their representatives and senators. 

 

ANCOR CEO Barbara Merrill responded to yesterday’s vote with the following statement:

 

"Now is the time we must weigh in and let Congress know that individual lives depend on the Medicaid home and community-based services system, and that no changes should even be considered until stakeholders like ANCOR see what the proposed changes are."

 

See below for ANCOR’s statement in its entirety.

 

 

“Today, the 115th Congress concluded their approval of a budget resolution that sets up the mechanism for Congress to repeal and replace the Affordable Care Act and also, through a process called reconciliation, make changes to the Medicaid program.

 

These changes include moving forward with proposals to transform Medicaid to a block grant or per capita cap program. Republicans, who hold the majority in both Houses of Congress, have indicated their intention to move forward quickly with this plan.

 

‘Now is the time we must weigh in and let Congress know that individual lives depend on the Medicaid home and community-based services system," said Barbara Merrill, ANCOR CEO, ‘and that no changes should even be considered until stakeholders like ANCOR see what the proposed changes are.’

 

ANCOR sent an alert this afternoon to its members – community service providers to people with intellectual and developmental disabilities – and urged them to contact their senators and representatives to ensure they understood that decisions to alter the Affordable Care Act or Medicaid as a whole have direct, and at times immediate, consequences for people with intellectual and developmental disabilities and their families who rely on home and community-based services.

 

‘The Affordable Care Act includes the creation of innovative and effective programs, like the Community First Choice Act, which have strengthened the Medicaid program and improved the ability of states to provide quality residential and day services for individuals with I/DD,’ explained Esmé Grant Grewal, Senior Director of Government Relations for ANCOR. 

 

‘The Medicaid HCBS program, while not perfect, is essential to making sure that hundreds of thousands of individuals with disabilities can live in the community. Historically, when states needed help in shifting children and adults with these disabilities out of large and isolating institutions, the HCBS program was created as a federal and state program to support that need.’

 

ANCOR urges Congress to engage stakeholders when considering changes to the Affordable Care Act and Medicaid, and offers itself as a resource to any Congressional office.”

ANCOR is the American Network of Community Organizations and Resources. 

Threads

Mirtha cutting Sophie's hair this weekend

I woke this morning at 5:15, anticipating the drive to Henry's school where he "conditions" three times a week for baseball tryouts in January. I lay on my back in the cold darkness, enumerating worries. Anxious about money. Anxious about Sophie and our ability to pay for, even continue to get, the medical marijuana that is, after nineteen years, the first treatment to help her. I glanced at my phone, at a thread on the pediatric cannabis therapy group on Facebook, a thread hijacked by a woman who insists on conspiracy. Something about seeds and growing it yourself and letting the seeds out. More about mold and pesticides, rumors that it will be another year before Charlotte's Web is spun in California. I felt the thread of worry. These people are all nuts, I thought, even as I get it. Get the nuts, that is. I've climbed into bed with people who believe that 9/11 is a conspiracy, who post about Obamacare in apocalyptic terms, who don't bat an eye at yellow journalism. But I get it. People thrown together, tied by threads, spinning. We do what we have to for our children. Who am I to judge? I will only accept another drug if Jesus himself offers it to me. I lie down, fully clothed, next to men who call Obama The Anointed One -- as an epithet. Mary Magdalene would do no less.

I forgot, though, of gratitude, that groping impulse toward it.

Gratitude is so close to the bone of life, pure and true,
that it instantly stops the rational mind, and all its planning
and plotting.  -- Regina Sara Ryan

Where parenting, politics, disability, poetry and politics intersect

So, yeah, go ahead and complain to me again about a (temporarily) glitchy website. Fact: many historic American achievements have been preceded by mistakes far more harrowing than a flummoxed website.

Bob Cesca (read the full article, here) 

In all this talk of miracles and healings, with postings of poetry and naked dancing, I haven't spoken too much of politics lately, except for the occasional jab at the difficulties we are facing in the epilepsy community with getting medical marijuana for our children and the draconian federal policies governing it.

So, where's the politics at a moon, worn as if it had been a shell? Now's the time for those of you who abhor them to click off, drop away, go back to your peaceful day. I'll give you a sec.




Peaceniks and Tea Partiers gone?

OK.

I want to talk about healthcare and the Affordable Care Act or Obamacare, particularly all this brouhaha over cancelled policies and the POTUS lying about it and the government comin' between me and my doctor (thick southern accent here, please) talk, etc. etc. First of all, there aren't many people who supported healthcare reform who weren't disappointed in how the Affordable Care Act shook out. Those of us in the individual insurance market who had any sense at all were perfectly aware that the Obama administration compromised mightily with the insurance industry in order to satisfy not only that Evil Empire but those who rattled their sabers about socialized medicine, about the slippery slope to European style government and hell and damnation. The Affordable Care Act was a HUGE compromise and far less than the universal coverage most of us on the "left" had hoped would happen. I perhaps cynically don't believe that real universal coverage will ever happen in this country because we're not sophisticated enough, as a rule. I'm in the group that believes the ACA made some monumentally positive changes, though, that will improve the lot of tens of millions of people, including our family.

Yes, we were one of those families that got the letter from Anthem Blue Cross stating that our policy would be terminated as of January 1st, 2014 because it was out of compliance with the law as outlined in the Affordable Care Act.

Let me translate that for you:

We at Anthem Blue Cross will no longer be able to provide you with one of the shittiest, most expensive health insurance policies that we offer because if we do, we will have broken the law. We can no longer deny that you add your epileptic daughter to your policy. We can no longer cap out our expenditures in the event another member of your family develops a disease or has an accident warranting millions of dollars of healthcare. We can no longer deny coverage for preventive care. We can no longer force you to pay ever-increasing premiums that buy you catastrophic health care ONLY. In fact, this shitty policy for which you've paid tens of thousands of dollars over the last nearly twenty years of your life only proved to us that you were as stupid and lemming-like as we could have hoped at the time. That time, sadly for us, is over. BUT, we're happy to inform you of your other choices, which might cost you more but be of improved value. 

Now, I'm as nervous as the rest of you, but I've been on the California website and have figured out that our family might qualify for a federal subsidy so that our monthly premium won't be as high as it is now. I've also figured out that if it is higher than what we pay now, it will be far more comprehensive with far more choices, and most importantly of all, Sophie's shitty policy can be cancelled and she can be added onto our own. I still think the Evil Empire (insurance companies) make out like thieves, and I still believe universal healthcare should be the rule of the land, but anything, anything is better than what we have now, and the ACA appears in many respects to be an improvement.

Now, I'm tired of typing. Read this article.

Tell me what your experiences have been.