What do you do when the government hates you (sing to tune of “Drunken Sailor”)

This administration – actually, the entire GOP with few exceptions – has been, and is, conducting a systematic campaign to dismantle protections and supports for people with disabilities. Of course, they have other targets as well – immigrants, people of color, Muslims, LGBTQ. But I’m going to focus on the disability aspect, because it doesn’t get as much attention, and of course, it has a very immediate effect on my life.

Let’s look at a list of changes the administration has made, or attempted to make, specifically targeting disabled people:

  • Block grant or per capita caps on Medicaid (attempted)
  • Allow health insurance to discriminate against/price out of the market people with preexisting conditions (attempted)
  • Destabilize the insurance markets so that only people with preexisting conditions will remain buying full insurance packages, at unaffordable prices (accomplished by executive order)
  • Cut Medicaid by trillions of dollars (in process – budget resolution passed by House and Senate)
  • Cut Medicare (in process – budget resolution passed by House and Senate)
  • Cut SSDI (in process – budget resolution passed by House and Senate)
  • Cut SSI (in process – budget resolution passed by House and Senate)
  • Weaken IDEA by getting rid of established guidelines for implementation (accomplished – rescinding of 72 Dear Colleague letters relating to special education)

Regarding the last one – the rescinded letters are already in the process of disappearing from the department of education’s website. You can find a list here: Dear Colleague Letters  Since last night, many of the links to the letters have become unavailable. There’s a good chance that by the time anyone reads this blog post, they will all be gone.

Remember when the White House page on disabilities mysteriously disappeared?

I wish I could muster up a bitter joke about all of this, but truthfully I see no humor in it. There’s nothing funny about the people in control of the government having it out for you and your child. There’s just a continual ebb and flow of anger, grief, and fear, and a persistent chill.

The White House says this is about trimming away unnecessary bureaucracy. That’s not what it is. I dislike bureaucracy as much as anyone (maybe more than most, since I have to deal with it every day in the medical and school systems), but this is simply a stripping away of protections and supports from a particularly vulnerable population. A population that has fought hard, for decades, to have these protections in the first place.

I can’t get my brain around this level of selfishness, greed, lack of empathy. Sometimes I find myself staring into space asking no one in particular “Why do they hate us so much? Why?”

In reality, they probably don’t even care enough about us to hate us. Hatred expends too much energy.

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Not a fan of #MeToo

Trigger warning: Ironically, this post is about the need for trigger warnings.

My Facebook feed was flooded yesterday with “Me too” posts. Some had no details, others were graphic and triggering. Really the whole thing was triggering. I’m not sure what this campaign is going to do, other than trigger some already traumatized women to relive their experiences and/or become depressed. Or maybe it’s just me.

Yes, sexual abuse, harassment and assault is rampant. Why is the onus on women who’ve experienced these things, and survived them, to open up to the world about it in a very exposed, impersonal forum like Facebook or Twitter – possibly upsetting other survivors in the process? Who does that really help?

Don’t get me wrong. There’s bravery in sharing one’s story. There are survivors out there doing powerful advocacy work.

But this kind of viral media campaign isn’t that. Most of the women (and MEN – why aren’t male survivors being encouraged to join in?) who I personally know have complex PTSD from ongoing abuse, did not post, or simply copied and pasted the original post. Probably because to do more than that was too triggering. Or maybe they don’t want everyone to know what happened to them (and you know what? That’s OK too!).

Is it just me? I looked at my feed again this morning and immediately felt the panic and depression setting in …

Who is this helping? Who is it supposed to help?

And please, if you’re going to do this and post details, PUT A TRIGGER WARNING.

The opioid crisis scares me – but not for the reasons you think.

I’m very concerned about the rhetoric I’ve been hearing around the opioid crisis.

People who use opioids for chronic pain have been talking, for a while already, about doctors suddenly cutting their dose, dropping them as patients, or subjecting them to questioning every time they need a prescription refilled, due to the new guidelines and restrictions. As the opioid crisis is proclaimed to be a national emergency, people who live with disabling pain are being stigmatized as addicts and drug-seekers, even by the medical establishment on which they depend.

While there are some valid questions about whether opioids are the best way to treat chronic pain, this is absolutely the worst way to address that issue. Better ways would include improving access to medical marijuana and to therapies like acupuncture and biofeedback that are proven to reduce some types of chronic pain. But even if we were to do those things, there would still be some people who need opioids, and they shouldn’t be shamed for that.

But it’s not just about chronic pain. It’s also about acute pain – particularly acute pain in people with mental disorders and/or histories of psychiatric care. Like me.

When I read or hear things about doctors prescribing “a week’s or month’s worth” of Percocet after a major operation when a few days’ worth “should” have been “enough” – I think of the aftermath of my c-section. I had a particularly nasty type of c-section after a prolonged and painful labor. I was prescribed two weeks’ worth of Percocet, and I took every precious pill. And I needed every one.

I was also on high-dose ibuprofen, but the Percocet was what made the difference between functioning and not functioning. The Percocet meant I could get in and out of bed, with help, without fainting from pain. The Percocet meant I could walk without feeling like my abdomen was starting to tear open. The Percocet meant I could take a shower without ending up in a sobbing huddle on the floor (although I was still close to that at times). And it meant that I could visit my newborn son in the NICU, hold him, and pump milk for him.

 

I did not become addicted to Percocet. But according to articles like this one, I was highly at risk of doing so, because I have a longstanding mood disorder and I had severe postpartum depression after my c-section.

Furthermore, I currently take a benzodiazepine (low dose, PRN) for acute anxiety, and combining opioids with benzodiazepines increases the likelihood of an overdose.

All of which makes me wonder. In the future – as reaction to the opioid crisis intensifies – if I were to have a serious accident, or another major surgery, would I be denied an opioid medication, because of my history of depression? Would I be under-medicated for pain, because of my responsible use of a prescribed anxiety medication?

I am NOT suggesting that it’s not a good idea to label things or to warn patients about the danger of using both drugs at the same time. Awareness is good. Increased availability and quality of mental health treatment would also be good, not just for people who are already addicted, but for those who are at risk of self-medicating with pain medications because their insurance won’t cover a decent psychiatrist.

You know what else would be good? An economy that doesn’t constantly punish people by making them work longer hours for less pay and less benefits while their living expenses steadily increase, only to see their jobs one day disappear.

A caller brought up the economic aspect of the problem on an NPR program I heard last week. Bertha Madras, one of the five members of Trump’s commission on the opioid crisis, responded that the solution to difficult conditions is to work harder (because that worked for her), and that we have to change “a culture that normalizes chemical coping”.

Which, to me, sounds like a call for more stigma. Let’s stigmatize the poor so that they work harder. Let’s stigmatize addiction more. And how do you deliberately stigmatize “chemical coping” without worsening stigma for people who take psychiatric medicines, especially ones with addictive potential?

What I fear is a world in which a postpartum woman can’t hold her newborn because of poorly controlled pain, and is stigmatized as a drug-seeker when she asks for something more effective, because she has a psychiatric history. And I wish someone would talk about that.

Why poor people have iPhones

This post is dedicated to the asshole doctor who said on the radio this morning that Medicaid patients can afford copays because he sees them using iPhones in the waiting room.

Full disclosure: I don’t have an iPhone. I have a cell phone from the Paleolithic era which has never heard of the internet, takes smeary pictures that may or may not be images of human beings, and has absolutely no clue what to do with an emoticon. This is because I love-hate technology. I do have an iPad, sort of. The iPad, which was given to me by a relative, who bought it used, appears to be one of the first iPads ever made. Half the apps don’t work on it. I use it to entertain my autistic son during doctor’s appointments (it has some of his favorite videos downloaded) and to access the internet during his surgeries/hospital stays. It also serves as our family’s camera. My laptop is only a little bit broken; as long as the screen is at a certain angle, it works just fine.

I have, however, worked alongside other poor people who do have iPhones and I think I may be able to offer some explanation to those who are confused by this phenomenon. (Not that I’m the first person to explain it, but whatever. Obviously it needs to be said over and over.)

First of all, some people buy themselves an iPhone while employed and then lose their job and have to apply for Medicaid. The organization that instantly confiscates iPhones from people who’ve just lost their jobs or otherwise encountered hardship has not yet been invented, although I’m sure someone somewhere is working on it.

Other people, like my former coworkers, still have their jobs; their jobs just don’t pay them much of anything. Often, they are single moms (for a variety of extremely legitimate reasons). Sometimes they’re also supporting grandchildren or extended family. They are putting food on the table (possibly with help from SNAP or WIC), they are paying rent (possibly with help from Section 8), they are (mostly) paying the utilities, but paying for medical care is just beyond them. They are stretched to the financial breaking point. At any given time they are likely to have all of $3 in their checking account – if they have a checking account.

So what are these people doing with iPhones?

For many people, an iPhone serves as a cell phone AND a land line AND a computer AND a camera. Phone and internet are basically essential to maintaining a job in our society, and it’s actually cheaper to have an iPhone than to buy all of those things separately. The iPhone might be a gift or a hand-me-down from a relative, they may have bought it used from a friend, or it might be something that they thought about and decided was a good investment for their family. The iPhone might be the thing that helps them stay awake during 12 hour night shifts, or allows them to communicate via FaceTime with their teenage kids when they have 36 hours of back-to-back shifts at different jobs. (Yes, people do that. It’s insane, it’s probably dangerous, but they do, because they’re trying to survive and take care of their families.) And finally, handing that iPhone to their child might be the thing that saves their sanity on days when they feel utterly, utterly exhausted, and yet they still have to drag their children to an appointment with a shit doctor who is judging them from the moment they step into the waiting room.

Blargh

I have things to say, I just can’t access them past all the rage. So, all I can really say is that with regard to myself, my son, and various other people that I love – I feel that our right to exist, to live, our worth as human beings is under attack by the government right now.

Shocker? Maybe, maybe not. I’ve just never felt it so keenly. I guess that says something about my own privilege.

Things that go bump in the night (weighted lap pads, health care bills)

Well, I’m back. Back from a refreshing, wonderful, not-long-enough vacation to – whatever this is. “Real life”?

Monkey did much better on this trip than the last one we took (which involved self-injurious meltdowns, regression and dehydration). This time, we were prepared. We brought a binder full of visual supports, headphones, an iPad with his favorite games and videos, fidgets, a weighted lap pad with farm animals on it.

The lap pad was very calming for him on the plane. Unfortunately, it had the opposite effect on the TSA agents. On our flight out, they searched my carry on, questioned me about it and then tested the lap pad for explosives. On our flight back, I removed it from the carry on before sending it through the scanner. They still questioned me and tested it for explosives. (Behold the terrifying object: Find Me Lap Pads) Despite the hassle, I will definitely bring it the next time we fly, because aside from lowering his stress level, it’s the ONLY thing that keeps Monkey from continually kicking the seat of the person in front of him.

I tried hard to avoid thinking about Monkey’s doctor’s appointments, therapies, etc, while on my vacation. However, I have been following the progress of the AHCA in the Senate and have been continuing my healthcare advocacy on and offline, contacting legislators, speaking with human rights organizations. I saw the footage of protestors being dragged out of their wheelchairs and carried away by police. That’s our future if we don’t fight back – except that, eventually, the cameras won’t be there. So, once again …

CALL YOUR SENATORS! Especially if they are Republicans. Tell them to vote NO on the AHCA.

I need a vacation.

Like, really really bad.

I’m beyond burned out. It feels kind of like depression, but it’s not, because if I spend a whole day sleeping I actually feel better afterwards. I keep starting things and then stopping them because I don’t have the energy to see them through. I don’t even have the energy to be effectively angry about the AHCA and all the other garbage the GOP is inflicting, or trying to inflict, on us.

Half the time I can’t remember what I’m doing. I know I’ve done some hilariously silly things lately – of the putting your keys in the refrigerator variety – but I can’t remember the specifics of what I did. So that’s not very funny.

What I know I’ve been doing – taking Monkey to doctor’s appointments and therapy and school evaluations, making complaints to the school district, scheduling more appointments, rescheduling them, grocery shopping and cooking (why do our bodies require so food so frequently? WHY???), deep cleaning the apartment (I seriously need a maid – I can pay exactly $0 per hour, anyone interested?) and of course making sure Monkey is washed, fed, medicated, clothed, intellectually stimulated etc. He just got his first pair of eye glasses, which look incredibly cute on him. We had a last-minute trip to the pediatrician today to try to decipher this cough he’s had for a while – to figure out which of his conditions might be causing it and whether it’s a serious one or not so much. He’s got a sedated MRI coming up. I can do all that stuff, I just have nothing left over. I’ve been dealing with my own health issues as well.

Fortunately, Monkey and his dad and I are going on a trip, very soon, to visit family. This means that for a while someone else will prepare my food and play with my child. It’s going to be fantastic. Maybe when I get back, I’ll have the mental energy to write a blog post about something other than how tired I am.

In the meantime, if you’re reading this and you DO have energy, PLEASE tell everyone you know how horrible the AHCA is. I’m not sure why the GOP is so determined to deprive kids like my son of decent medical care by segregating them into under-funded “high risk” pools; I suspect it has something to do with those big corporate tax cuts they’re handing out. Whatever the motivation, it’s not OK. It’s evil, actually.

So tell your senators, especially if they’re moderate Republicans. Yell at them for me, because I’m too tired right now to yell.