Monday, April 23, 2012

Can You Be Your Own Advocate?

I wrote this post back on June 1, 2011. Almost a year ago. I invite you to go read it here.

If you want the condensed version, I talked about how humbling and shaming it is to have to go to the psychiatrist's office, where they all look at you like you're going to do something "crazy." How the med students are giving you glances they think you can't see. How it makes you feel like less than a person.

For all of the work of all of the people who are trying to put an end to the stigma of mental illness, I'm afraid there has been absolutely no progress. Well, you might say, it's only been a year. But I once again find myself having to address this issue.

To be honest, I don't want to address this issue, because the incident that occurred on Friday made me feel so small and so ashamed that I wasn't sure I wanted to ever write anything about my illness again.

But here's the thing. There is such a thing as the Mental Health Patient Bill of Rights. It comes in various forms, but in every case, the number one credo of the Bill is "You have the right to be treated with dignity and respect."

I assume that this means not only by your psychologist or psychiatrist, but also by their staff. Apparently, my psychiatrist's staff did not get the memo. And if I didn't love this psychiatrist so much and think he was worth the effort to drive to another state to see him, I would be doctor searching right now. Because it's the staff at the mental health center that makes me feel the worst about my mental illness.

I have written in the past that my psychiatrist, "Dr. J." is a brilliant, intellectual, educated, compassionate man who is willing to "talk shop" with me about my illness. He never sticks to my 15 minute med check, because he enjoys talking to me. He takes my input about what I think my medications are doing for me and what needs to be changed. He respects me when I say "no" to a medication and doesn't try to force it on me. Basically, he makes me feel like a human being with an illness.

Not so his staff.

When I see that I am getting low on my medications and they are going to need a refill, I make sure that I have an appointment so I don't have to go through his staff to get them refilled. Last week, I made an error in judgment by asking the pharmacy to call in for a refill on my ambien the day before I had an appointment. If I'd thought it through, I would have waited and just asked him to refill it when I went the next day. I would have walked out of there with the scripts in hand and not had to deal with the woman who says she is his nurse, but who I suspect is actually a minion of Satan whose only job is to demean the patients and make them need years of therapy to recover their self-esteem after she destroys it.

When I went to see Dr. J. on Wednesday, he wrote me a 6 month prescription for my anti-anxiety med, sent a six month prescription for my anti-depressant to my pharmacy, and said, "Oh, I see we refilled your ambien yesterday."

What would that mean to you? To me it meant that he had either called it in or sent it electronically, so I didn't question him. I didn't even think to question how he had conveyed the prescription to the pharmacy, because I totally trust him.

Except the times that he forgets. He readily admits he has a touch of ADD and sometimes he will write a prescription and forget to fax it to the pharmacy. I should have remembered that.

I saw him on Wednesday. On Friday, Justin went to get my prescriptions. One of my fibromyalgia drugs was there. The ambien was not. So, I had to call the office. At 3:00. On a Friday.

My primary care physician has told me that they get nervous about prescribing narcotics to people who call late on Fridays claiming to have "lost" their prescriptions or "just realized that they ran out of their prescriptions" because weekends are when people are looking to sell and buy narcotics. I would never have thought of that, because I don't think of my narcotics as being a commodity. But I do keep this in mind when I am looking for refills because I don't ever want him to think I am drug seeking.

I never thought someone would accuse me of drug seeking for ambien. Who sells or buys ambien? Is this even a thing?

Call to psychiatrist's office:

Recording: If you would like to have a prescription refilled, press three.

Me: Pressing 3.

Recording: This is K, Dr. J.'s nurse. We are no longer doing routine medication refills at this time. If you need a refill, please contact your pharmacy or come in on Monday when we have walk in clinic hours. If you would like to leave a message, please leave your name, phone number, mental illness (note: I made that one up), and I will call you back.

Me: Left name, phone number, pharmacy phone number, explanation that Dr. J. had told me he had refilled it on Tuesday but it wasn't there, please call me back.

Return call approximately an hour later:

K: Yes, this is the nurse from Dr. J.'s office returning your call.

Me: (Explanation of what had happened.)

K: Well, it's impossible that Dr. J. sent your medication to the pharmacy. He has to write the prescription.

Me: He told me on Wednesday that he had filled the prescription on Tuesday. Can you check with him?

K: He's not available. And he's out on Monday. There's nothing I can do for you today, since it's close to close of business on Friday.

Me: (Getting really annoyed) Look. Dr. J. told me that he refilled the prescription on Tuesday, but the pharmacy doesn't have it. Can you please check with him and find out what happened to it?

K: You should have asked him when you were in on Wednesday.

Me: I did ask him and he told me that he had refilled it on Tuesday. I assumed that he had sent it electronically, but maybe he meant to call it in and forgot. I need you to check the status of it with him.

K: Well, we aren't allowed to send prescriptions electronically (excuse me???) and if it's here, you would have to come and pick it up.

Me: Well, say it is there. Could you mail it to me? I live in Winchester and you are in West Virginia.

K: Oh no. It's illegal to mail a prescription. We couldn't do that. (Again, excuse me? My primary care doctor mails me a prescription every month because it has to be filled in person and I live an hour away from his office. I doubt he would break the law.)

Me: Well, can you please check with him and see where my prescription is?

K: You should have asked him about it on Wednesday. I don't think there's anything I can do about it until next week.

Me: Find my prescription or I will drive to Martinsburg and cut you. (In my head.) Can you please look for my prescription and call me back?

K: I can check and see if he left it for you, but it's pretty late on Friday (3:00 is late???). You probably wouldn't be able to get here in time to pick it up. If he filled it.

Okay, stop. If he filled it???? Are you freaking kidding me????

At what point in this conversation did I start to feel like a little kid being scolded by her mother for putting her hand in the cookie jar without permission? And what happened to the being treated with dignity and respect portion of the mental health bill of rights? Does this only apply to the actual treating physicians and not their staff?

I understand that there are people who try to get multiples of their prescriptions. I understand that they deal with people who are made unreasonable by mental illness. I understand that they feel they have to "protect" the doctors from us crazy people. I don't like it, but I understand it. What I don't understand is why I couldn't possibly be right in that the prescription got lost somewhere and maybe she should get off her butt and try to find out why.

We left it at she would check and see if she could find it but for me not to expect anything to happen on Friday. Luckily, I was assuming this would happen when Justin didn't get the refill when he picked up my other prescription and had enough ambien to last me nine days. What if I had been out?

Dr. J. has told me that he believes that the most important thing in keeping a bipolar person stable is getting a good night's sleep. I am finally in a good sleep routine and getting the sleep I need. I don't have insomnia for the first time since I was six years old. I'm stable and rational. And I am just as much a human being as this "nurse" is. Which is why it infuriates me that she tried to make me feel as if I am six years old and asking for something I'm not allowed to have. In other words, she made it very clear that she didn't believe me and that I was a drug seeking mental patient who just wanted to get high or sell my drugs to someone else to get high. High on ambien. That's pretty funny, when you think about it.

When I hadn't heard anything by 4:00, I called the pharmacy and had them check. They still had not received a refill request from the doctor. So I called the doctor's office back.

Me: I would like to leave a message for Dr. J. personally. Not for K. For Dr. J.

Receptionist: Oh, I'm sorry, hon, but Dr. J. does not return patients' phone calls.

Me: Explanation of why I needed to talk directly to the doctor.

Receptionist: Oh, yes. Ms. Newton. K found your prescription on his desk. She asked me to tell you that she will see if we can make an exception and call it in for you.

Make an exception? Again, excuse me???? This is not a controlled substance. It is called in routinely. When Justin was having trouble sleeping last year, he called his doctor to explain the circumstances and they didn't even ask to see him. They just called it in.

Again, dignity and respect. Simple dignity and respect.

I got a call from our pharmacist, who is wonderful and knows all of my medications, around 5:00 that the prescription had been called in and was ready for me.

This is what I have to go through to get my regular prescriptions filled. It's ugly. It's demeaning. It makes me feel less than human. It makes me feel ashamed. It makes me feel as if I am seen as a drug seeking patient.

I am none of those things. I have the right to dignity and respect and to be treated as a human being. I don't care if I am raving and out of my mind. I still have the right to those things. I have the right to be listened to. Having bipolar does not make me less than a human being. It does not make me less than that "nurse" who lied to me and refused to help me.

They made the mistake and I paid for it by feeling awful about myself.

And I didn't get an apology. Of course. Why should they apologize to the mental patient?

I am going to close this with a quote from John McManamy, author of the blog Knowledge is Necessity that I found this morning:

"Keep in mind," I told my audience, "a lot of us view the world through the eyes of artists and poets and visionaries and mystics. Not to mention through the eyes of highly successful professionals and entrepreneurs. We don't want to be like you."

It was as if I had let rip a roof-rattler and everyone was too polite to laugh. Then I blurted out: "To me, you all have flat affect."

Kelvin grade frozen stony cold silence.

Really, why would I want to be like my psychiatrist?

This struck a chord in me. Only in this case, why would I want to be "normal" like the "nurse" who was so nasty to me? I'm fine with being like my psychiatrist, because he gets me. And he treats me like a person.

His nurse. Not so much.



  1. I don't know what the laws in your state are, but in California I get ALL my prescriptions via mail. Ridiculous. I'm sorry you had to go through that. In 2009 I hurt my neck SEVERELY. I woke up, something in my neck popped, and I couldn't move. Nothing. It took me about two hours to crawl FOUR INCHES to get to my phone and call someone for help (I lived alone at that point). I couldn't get in to the doctor for a few days, at which point my neck was significantly better, but not perfect. My doctor took a look at me, barely did anything, and then said, "Well, I COULD give you some Vicodin, if you WANT" with a "uh-huh, I'm SURE it hurts SO much" look. I find that if a medical practitioner is there because it's his "job" not his "passion" he's usually an ass (pardon the language). I'm so sorry you had to go through that.

  2. So sorry that you had to go through that experience. I know you said you really like your doctor and personally, if he's as great as you say, I think you should mention the way you were treated and the effect it had on your health next time you see him.


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