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.

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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.

Dear medical staff: can we have the stickers without the gendered assumptions, please?

Monkey’s favorite show right now is “Sofia the First.” He loves the flying horses and the woolly wombeast. He particularly loves Cedric the evil sorcerer, and the dude with the magic show who kidnaps Clover and renames him Mr. Cuddles. (Monkey’s stuffed bunny is now named “Mr Cuddles” and is forced into servitude multiple times a day.) He got really excited a few days ago when he saw Sofia in her purple dress on a puzzle at the library. He also loves to watch the songs from the movie “Moana” (he has a name for each song: “How Far I’ll Go” is “the pig”; “You’re Welcome” is “the big rock”).

So it bugs me when, as this morning, we are at a doctor’s appointment and the doctor or nurse, who is kindly fanning out a handful of stickers for Monkey to choose from, shuffles rapidly past the Sofia and Moana stickers and go straight to Ninja Turtles and Spiderman.

OK, maybe it’s not a big deal. They’re just stickers, right? But you know what, screw that, it IS a big deal. My 3 year old just went through an uncomfortable and scary procedure (which happens to him A LOT) and he should get to pick a sticker that he really wants, not what YOU (well meaning adult) think he should want. I mean, at least let him LOOK at the stickers you would show if he were a girl. Just show all the kids the same stickers! I’m sure there’s a little girl out there somewhere who loves Ninja Turtles and would be thrilled to have the sticker Monkey somewhat reluctantly took for lack of options.

I’m trying to come up with a quick, polite way of letting these medical professionals know that they need to show him the “girl” stickers too. I’m just not sure how to phrase it. I did speak up once, and Monkey delightedly chose, from a full drawer of stickers, one with Dora on it, which was his favorite show at the time.

This is 2017, folks. It’s not even about gender identity or sexuality at this point, it’s about acknowledging that human taste doesn’t fall into neat stereotypical boxes along arbitrary gender lines.

When I was little, I loved dinosaurs (still do). I put bows on my dinosaurs and made them marry each other. I played with a “boy” thing (dinosaurs) in a “girl” kind of way (weddings), just like Monkey enjoys a “girl” thing (Sofia) in a “boy” kind of way (evil magician). (Even these designations are arbitrary; I love a good evil magician as much as the next person.) But it doesn’t occur to companies to sell shirts with dinosaurs wearing bows in the girls’ section of the store, or with Cedric and his evil crow in the boys’. I can’t decide if this is prejudice, or capitalism, or a lack of imagination. Maybe all of the above.

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.

Bubbles in the sun

I write a lot of angry posts, because I’m angry a lot. I have reasons to be angry. But there are reasons to be happy, too, and this is a happy post. Today I watched my son and a little girl who’s spent most of her life fighting for it, play outside together.

I’ll back up for a moment. Earlier in the day, I took Monkey to a group activity with other children his age. During the hour we were there, he did not talk to any other children and none of them tried to talk to him. He spent a large chunk of his time waving a stick in front of his face and scripting, which is his favorite activity right now. At one point another little boy ran into his stick and decided that Monkey was “mean.” I then got to hear his mother’s comments about how my son shouldn’t be waving a stick around (probably true, but good luck stopping him).

This is pretty typical of our social interactions lately. Monkey hasn’t had a play date in months, since my last mom friend left the area and then (for bonus points) told me she didn’t want a friend who talked about her kid’s health problems all the time. When he is around other children, he doesn’t know what to do, and they don’t “get” him.

Anyway, we ran some errands and went home. Monkey relaxed with his favorite TV episodes and waved his stick without constraint. It warmed up outside, sort of; it was sunny enough to pretend it was warm. We went out into the courtyard of our apartment complex to play with the giant bubble wand, and were joined by a little girl who lives in another apartment with her grandmother. We’ve run into them several times before.

Monkey and the little girl took turns with the bubble wand for a while. Then I made bubbles, and they chased them. Then they chased each other. While they ran around, I learned from her grandmother that, although her hair has recently grown back in, the girl has been battling cancer since she was a year old. I then shared Monkey’s medical history, as best I could with the language barrier we were dancing around. We watched our children, both of whom have spent too much of their short lives in hospitals, and in pain, and isolated, and hooked up to medical equipment, run and scream and laugh together on the sunlit grass.

Soon they had to leave, although the girl didn’t want to. The moment broke like one of Monkey’s bubbles, but that unexpected human connection, so close to home, stayed with me. Monkey kept telling me, excitedly, that the girl had played with him. He felt it too.

I hope they’ll get to play together again.

How to lose a friend (when you have a child with special needs)

1) Start out with a baby with unexplained delays. Befriend a mom whose baby also has unexplained delays. Talk a lot about your babies and their delays.

2) Live in affordable housing, in an apartment that’s not big enough to put all your stuff away even on those days when you have the energy to try. Make your living space look like a disorganized hospital by lining up oxygen tanks in the entryway and hanging nasal cannulas off chairs.

3) Find ways for your child to be in the hospital a lot; it interferes with scheduling play dates, and also makes your friend feel obligated to care even after the novelty has worn off (like, really? the hospital again?). Ideally, this should start happening right around the time that your friend’s child is outgrowing her delays and needing fewer services. It also helps if you can get a few new, unexpected diagnoses during this period to stress over and talk about in detail.

4) Share hilarious anecdotes, like how you once splashed yourself in the face with your child’s lymph fluid while emptying Jackson-Pratt drains. (Also a great way to avoid making new friends, should you find yourself in a group of moms.)

5) Keep venting about therapists, doctors, DMEs, and your concerns about your child’s development, while your friend has nothing to say in that area because her child is basically typical now and this stuff is no longer a significant part of her life.

6) Try to convince yourself she’s not passive aggressively telling you something when she cancels play dates at the last minute “because she has to do laundry”, or leaves food on your doorstep after you get back from the hospital instead of coming in. Keep texting her to ask how she’s doing and if she wants to get together, even though you’re always the one initiating it. Let your suspicion and resentment simmer quietly.

7) Stop texting her for a while because you are completely overwhelmed with illness, ER visits, pediatrician visits, another sleep study, trying to get your child to tolerate a nebulizer (no really, it’s an octopus!), trying to figure out the whole process of transitioning from early intervention to preschool, and scheduling two different autism evaluations because the people from the first place stopped calling you back and still haven’t given you a date. Notice in some part of your subconscious that she hasn’t commented on any of your medical updates on Facebook, even when your son was in the ER on Christmas Eve.

8) Ask how she’s doing. When she doesn’t respond within ten minutes, ask if she’s ignoring you.

9) Get a lecture about how you haven’t been contacting her either, and how she’s been really busy with buying a house in an upscale neighborhood so her daughter can go to the best preschool.

10) Drawing on months of carefully controlled, slow-simmering resentment, say something sarcastic implying that your life is harder than hers. Be told that you’re a crap friend because all you talk about is your child’s medical issues and she doesn’t want to hear it.

11) Completely explode. Use profanity. Be as insulting and mean as you possibly can. It’ll feel good for about 10 seconds. Maybe a full minute. Make sure there’s no possible way she’ll ever want to hear from you again.

12) Take a benzo so you can settle the adrenalin enough to get some sleep, because you’re touring the special needs preschool in the morning. Feel guilty and analyze the reasons why you’re a horrible person.

13) Realize that you should have let the friendship die quietly months ago, and the main reason you didn’t was because it was your only shot at play dates for your socially challenged son.

14) Decide to do better next time.

Trust me, this works really well. I think it might actually be impossible to keep a friend if you faithfully follow all these steps. Good luck!