“..it….felt like my body and brain were conspiring against me to do something terrible, that I logically did not want to do, ever in a million years. It’s not about self control. It’s about taking those thoughts seriously, and seeking help, and getting treatment.
But so many people just can’t.”
You guys are in for a treat. My lovely and brilliant Bipolar friend recently dug her way out of an insurance shit show and I had the honor of following the story and listening to her rant….she was saying awesome stuff and I have had a writing lull so I said… “Hey write a post for me” and she said she would because this needs to be said. I’ve gone off about the doctors but we haven’t talked about meds and insurance yet and quite frankly I’m a touch burned out on all of this shit so I gladly hand her the mic……………………………..
This post is about how I had to briefly stop taking seroquel xr, not after talking about it with my psych doc and coming up with a coping plan to wean off, but after my refill turned out to be NINE HUNDRED DOLLARS for a 90 day supply.
That’s right. Ten dollars a day. For one, 50 mg pill.
I struggled with postpartum anxiety and depression with my first kid and that’s how I ended up diagnosed as “mildly” (ha) bipolar II, rapid cycling, with primarily mixed features. Unfortunately baby #2 had a complicated birth and some medical issues after, and screamed almost 24/7 for most of her first year. I was not sleeping. Everything seemed dark and in slow motion. My world revolved around trying to calm a screaming baby that simply could not be calmed.
And, ironically, I thought I was doing pretty well, considering I was experiencing almost every exacerbating factor in existence for bipolar disorder.
Then I had the random intrusive thought of wanting to hurt my baby. One night while I was up with her at 3 am yet again, having not gotten a solid chunk of more than 10 minutes of sleep in a week or more. It shocked me. I would never do that. It was fleeting…it no more than popped into my mind and it was gone. I was disgusted with it. Good riddance.
Then it happened again. Such a brief little flicker of a thought you would never engage. And again a few days later. And again, except this time I felt it in my hands. I had to clench my fists. It felt physical. I called my Pdoc immediately. He upped the Lamictal and added 300 mg of Seroquel xr and told me to tell my husband I wasn’t allowed to get up with the baby anymore at night. I saw him every few days after that, then every few weeks.
Seroquel is powerful stuff. I definitely started sleeping again. I was shocked at what bad shape I had been in just a few days prior without even recognizing it. I also saw now how I had been sleeping with the proverbial one eye open. I couldn’t remember the last time I slept so deeply, without waking with my heart pounding every time a sigh came from one of the kids’ rooms.
I eventually was able to get down to 50 mg a day in conjunction with the Lamictal. I felt better than I ever had in my life. I decided to stay on the 50 mg/day at least until my baby was solidly sleeping through the night consistently.
So let that sink in. I was prescribed Seroquel because I thought about HURTING my BABY. And it worked. Not only did it work for the original reason for which it was prescribed, it also made me possibly more functional than I had ever been in my adult life. I no longer had to wonder when crippling anxiety would hit me. I felt like a normal person.
So here I am, recovering from what was at least borderline if not acute postpartum psychosis. I had been on the Seroquel for 12 weeks. Which is psychiatric illness time is barely enough time to get to a point that might be considered “stable.” And yes, I felt stable.
So why, when a patient is so stable, and feeling well, and able to live a normal life, and able to enjoy and bond with their baby, would an insurance company want to take that medication away by making it prohibitively expensive? I have a good job, a very good job in fact, and so does my husband. We have a major national insurance company. We are well resourced.
I called my Pdoc to see if I could get any samples and she said they were out but she would put me on the list. Then told me of the other patients their office had, that had run into similar situations, patients that were far less functional than I was. Patients who legitimately needed this medication on a daily basis to keep them from hurting themselves or others. Patients who hadn’t been able to hold a job until they were prescribed this medication. And, she wondered aloud to me, how much of the crime and abuse and hate in our society was a result of people unable to get the meds or services they needed?
I talked with my bipolar friend, who is the author of this blog, about this. I was so angry. Not just for me – but for all of the people who need these meds to stop the voices in their heads from telling them to kill people. Or shoot up movie theaters. Or drive their kids into a lake. People who need it to stop hallucinations or delusions. People who need it to hold jobs, or care for their children, or just function as a healthy person in society. Which, shit, might include me too! I have missed a dose a few times and felt fine, but no one, including me, really knows what will happen when I quit taking it, if I do.
Then the following day, a friend (not bipolar) of mine, who has been struggling with anxiety and depression for almost a year (coincidentally since just after her 1st child was born) posted in a fb group we were both in. She has been posting a lot over the past year about how hard it has been for her to get mental health care. She has Medicaid and the list of providers who will see her is short. She has debated going inpatient several times, because she’s desperate. Her GP will give her xanax, and antidepressants, but she suspects there might be more going on. And on this day, her post was about how while driving down the highway with her small child, she had gotten an inexplicable, random, sudden urge to swerve into the path of an oncoming semi.
My heart broke when I read that. Her conclusion, to the fb post, was that she was so glad she had “self control” and hadn’t done it. But I’ve been there. I’ve had that intrusive thought, that seemed so ludicrous. And then had it again, and started to get scared. Then had it again, and felt like my body and brain were conspiring against me to do something terrible, that I logically did not want to do, ever in a million years. It’s not about self control. It’s about taking those thoughts seriously, and seeking help, and getting treatment.
But so many people just can’t. She has been trying for almost a YEAR to find a therapist or psychiatrist. I am a well educated, financially capable, woman with money to spend out of pocket if needed, readily available transportation, widely-accepted insurance and endless resources available to me, at the click of a mouse or a phone call away.
And even I…after admitting I wanted to harm someone else, and with a history of mental illness and postpartum depression, cannot get the medication I need for less than 10 dollars a day. How exponentially more difficult it must be for people without those resources, and/or who are in or on the verge of an acute bipolar/schizophrenic/depressive/panic episode.
The system is failing all of us. Because for every person who cannot access the services and medications they need, there are families and friends, and coworkers that are affected also. Total strangers can also be affected, especially if the mental illness is one resulting in violent or delusional thoughts or actions. We are not just failing the ill or the suffering, we are failing ourselves as a whole. We need to be treating mental illness, especially acute, like any other illness, and giving it the treatment it deserves.
I finally was able to find some savings cards direct from the pharmaceutical company that got the medication down to $2.60/day. Which I can swing.
But I can’t help but think of the people who can’t. Or the people who could, maybe, if they knew that was available, and were in a position to spend 2-3 hours (like I did) calling their doc, and their pharmacy, and their insurance company, and then had a computer to look it up, and a printer to print off the coupon, and a car to drive it to the pharmacy.
What happens to the people who don’t have $10/day, or $2.60/day, or insurance, or a Pdoc, or the mental resources to just deal with the stress of all of this?