Since realising around age 14 that I can’t sing, I switched to ‘thinking’ in the shower, and that is where I do some of my best thinking. During this morning’s wash-and-wax I got to thinking of the events of the past week, and it riled me.
Here’s the thing. I have multiple chronic pain conditions. (By multiple I mean “two”.) Because of living with these for years, I’ve developed allergies and/or holes in interior body parts that prevent me from taking most over-the-counter pain meds. I’m very self-conscious about this, because I feel like one of those people that the doctors on “ER” are always mocking behind their backs. (“Oh, she just wants the pain meds.”) The thing is–I do. I DO want the pain meds. Not to float off on some glorious cloud of euphoric high like a disenchanted film student, but to be able to walk from the bed to the bathroom without passing out. To be able to actually do work instead of laying on the couch with a heating pad and whimpering. I don’t love the pain meds. They often make me queasy or sleepy, but if it’s between feeling like I had a big day at the mall or like I’ve been gutshot in an Old West mining camp and left for dead by savages, I’ll take the pain meds.
Here’s where the DEA comes in. (No, I haven’t forgotten the premise of this post.) This week I was having a bad endometriosis flare. My doctor prescribes 12 Lortab a month for this purpose. He will not prescribe any more because of the “danger for addiction.” I’ve told him that since I’ve been told I can no longer supplement the Lortab with Anaprox (an NSAID), I need an alternative for pain management. His office’s official alternative?
“Go to the ER.”
Well, I’ve been to the ER, gang. More times than a 25 year old ambulance rig. I know my ER bills by heart. My average trip to the ER costs me (and my insurance company) around $890. Had I an extra 12 pills–all it would take to manage the flare–it would cost me and the insurance company around $22.50.
On my last visit the ER physician said that my gynecologist “needed to do a better job of pain management for [my] condition.” My gynecologist wasn’t impressed with the criticism. Because of the DEA he sticks hard and fast to his self-imposed perscription limits. I can’t say that I blame him, really.
I know this is a topic I’ve whined about before. I know there’s precious little I can do. I’m deadly embarrassed whenever the topic comes up, but I’ll be honest. In a world flooded with press about addicts, where a good junkie-in-the-family story can net you a million-dollar book deal (whether the story’s true or not) I think it’s important for pain patients to speak up. We’ve been ghettoised by the bullies who abuse the medication we need for survival. By being so vocal they’ve turned anyone taking a course of pain management into craven, wasted blues musicians in the eyes of society.
Guess what, society? It’s starting to cost you. Remember next time your insurance premiums go up at work. Don’t blame the poor immigrants. Blame the DEA which has a hand in making folks like me pay monthly visits to emergency rooms for basic treatment.
This month? I stayed home and gutted it out. I’ve been gutting it out for a lot of years. It would be nice if instead of writhing in pain I’d gotten to go to the Eddie Izzard show at the Ryman. Just once I’d like the cake instead of the death.
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Kat, are all NSAIDs ruled out as a supplement, or just the Anaprox?
all oral NSAIDs are off the table because of intestinal ulceration. Injectibles can be given on occasion but I’d developed an NSAID toxicity over the years that caused the bulk of my sun sensitivity. So they try to limit the amount of injectibles. Which breaks my heart. Yesterday I would have paid a thousand bucks for toridol.
Dang. That’s just insane.
I can’t believe the timing of this story. I’m writing a story next week about invisible disabilities and pain and the use of pain meds.
You need another doctor. I’ve given you the name of mine, and I really suggest you use him.
As a TennCare advocate, I am very upset with people who abuse prescription drugs because it costs the taxpayers money and makes them, understandably so, not support generous health care programs.
As you know, I have Rheumatoid Arthritis and Lupus. I take hydrocodone daily.
Not once have I abused it. Am I dependent on it? Well, yes. It would take me a few days to come off of it without complications. So?????
There is a vast difference between dependent and abuse.
I’m also dependent on a blood pressure medicine that can cause me to have a stroke if I miss one dose, yet no one bitches about me taking medicine for my high blood pressure every day, but I’m supposed to be in severe pain every day? Tora Caca!
You need to find a respectable doctor that will prescribe hydrocodone for you as a regular prescription, and just be sure not to refill it early.
Unfortunately, I can’t give you the extra 12 pills a month because it’s against federal law and I’d go to jail. So I’d be a criminal for helping you when the doctor won’t, and the system failed you.
No wonder you’re a libertarian!
Kat, I was called away by a plumbing emergency yesterday, didn’t mean to ask and run. This is just awful. And I know that it isn’t new for you, or for people generally. And I know that when I was on Darvocet over the winter it not only helped me deal with the pinched nerve but was also the first time in over 30 years that I had no joint pain. Would I love to be on Darvocet for the rest of my life? You betcha. Do you know what any doctor would say if I went in and said that? I’m sure you can guess.
Katherine, this is such an important story. I put it up on Friendfeed because I wanted people to know it.
And you are absolutely right.
[...] Just read all of her post because it’s insightful. [...]
I can’t believe the timing of this story. I’m writing a story next week about invisible disabilities and pain and the use of pain meds.
I look forward to reading it…sounds interesting.
You need another doctor. I’ve given you the name of mine, and I really suggest you use him.
I’m really happy with my rheumatologist, though. He’s always been receptive to my pain mgmt needs, and I’m very happy with the results of the Tramadol for RA/Fibromyalgia pain management he’s got in place. The problem is my OBGYN. The problem with my problem OBGYN is that I LIKE him. Other than the pain management issue he’s a great doctor. He’s one of the most highly recommended GYNs in my area. He just doesn’t grok pain management. Or so I keep telling myself.
The other problem (as I see it) is that he has a solo practice.
I think I’m making excuses because the thought of finding another GYN and going through that hell is something I’d like to avoid at all costs.
Kat, I was called away by a plumbing emergency yesterday, didn’t mean to ask and run.
Few things are as frightening to me as the concept of “plumbing emergency”. I hope all is well and came out relatively inexpensively.
Seeing as this is a blog, I didn’t think twice about the “ask and run” thing.
And I know that when I was on Darvocet over the winter it not only helped me deal with the pinched nerve but was also the first time in over 30 years that I had no joint pain. Would I love to be on Darvocet for the rest of my life? You betcha. Do you know what any doctor would say if I went in and said that? I’m sure you can guess.
Everytime I hear a story like this it breaks my heart and makes me angry. The only thing that makes me angrier are the people who say that chronic pain is “in your head” or “a punishment for sin”.
Katherine, this is such an important story. I put it up on Friendfeed because I wanted people to know it.
And you are absolutely right.
Thank you, thank you. A thousand times thank you.
I really am very embarrassed about this story, this turn of events in my life. I’m ashamed often of being this person instead of the kind of super person who gets written up in magazines and smiles on TV and Makes The World Better by just getting out of bed in the morning.
I guess I figure if any good comes of it, that redeems my experience a little.
It was just a small plumbing emergency. Kitchen sink leaking. All over all the things one keeps underneath the kitchen sink. Then there was the cheerful task of finding a plumber to look at it on the weekend. The result is that we had a “my, isn’t Nashville a small world” experience and have found the plumber we will use when we put in a new sink and go to copper pipes in the kitchen. Good for the endorphins, which is also good for joint pain.
[...] Katherine Coble shares a personal story about the DEA’s regulation of prescription pain medication: I think it’s important for pain patients to speak up. We’ve been ghettoised by the bullies who abuse the medication we need for survival. By being so vocal they’ve turned anyone taking a course of pain management into craven, wasted blues musicians in the eyes of society. [...]
[...] by Rachel on June 23, 2008 Katherine Coble has a blog post detailing her personal struggle for adequate pain relief. She says: Here’s the thing. I have multiple chronic pain conditions. (By multiple I mean [...]
I don’t think that you should be embarrassed about your pain. I do understand the whole power issue of having to ask someone (doctors, pharmacists, etc) for help, but I think you should look at this from a different perspective.
What if you went to the grocery store and you had a coupon for a free 12 pack of Pepsi and when you got there everyone told you that they did not have Pepsi. You could have Lemonade(no) or Water(no) or sugar free juice (no), then they told you that you could get your Pepsi if you would only drive to the other side of town to get it, but that the store would be closing in 5 minutes, so maybe you should just go to the convenience store across the street and pay full price.
You would not put up with this type of treatment in any other scenario or establishment, why do you accept it for your pain? Be an advocate for yourself and (several expletives deleted) anyone who is not willing to work with you and for you for pain management. Do you have a way to work with a Physician or group strictly for Pain Management? Someone whom might coordinate between your various Providers for better medication management across the board? I am convinced that there is a better solution than you personally suffering for lack of 12 tablets. I am going to think on any resources that I come across that might help.
Ok, sorry that got a little rant-ish, but you know what I mean.
Totally agree with Sara. There’s nothing to be embarrassed about and you have a perfectly valid issue here that badly needs to be addressed in today’s society.
I just hate like hell, as a friend, that you are forced to go thru this.
saraclark, I know you’re right. I guess that there’s such shame in being a pain patient these days, the me who is normally so assertive just quavers in the face of sour nurses.
In thinking about it, I’m realising that most of my conversations about the topic have been with the nurses who answer the phone. Any time I’ve ever gotten to speak with an actual doctor, the doctor has been–or at least seemed to be–very sympathetic with my needs and aims.
I’ve got two appointments coming up, one with my rheumatologist and the other with my gynecologist. That’ll be the first face time I’ve had with doctors in a few months, and one of the main topics of conversation will be the best way to handle my pain management.
Back to the DEA side of things, the whole Pain Management specialty is constantly under fire. The patients I’ve known who’ve been in PM clinics are finding themselves without doctors many times, or with their prescriptions altered as the DEA “investigates” and shuts the PM clinics down. I know there are shady clinics and Rx drug addicts out there. I just would love for people to realise that there are, however, actual pain patients suffering. And causing a great expense to the health care system because of our lack of ongoing treatment options.
And don’t forget the problem that many people with chronic pain have the pain as a result of medical conditions that make it impossible for them to get proper medical insurance, so that they don’t have regular physicians or can’t afford the medications anyway.
I see PM studies and trials all the time, legitimate large hospital affiliated ones. I just need to research more. I have my fingers crossed for you and your Dr. visits. Good thought about the nurses, sometimes they act more as gatekeepers than care givers. They get kicked around the by same system.