Wednesday, December 17, 2008

Open letter to doctors and the D.E.A.

Warning: If you are easily upset, worrisome, or offended, do not read this.

Dear Doctors in the U.S.A. and the Drug Enforcement Agency,

Please explain something to me. Why do you deny pain medication to people in pain? Yes, I know you are afraid we may become addicted. Let me ask you a question: SO WHAT?

Next week, I'm seeing a new doctor. I was told that their office doesn't prescribe pain medication. Think about that for a moment. Isn't that crazy? Well, it's not, because the DEA has made it very difficult for doctors to prescribe pain medication. My old doctor told me that this was a big problem. They have to register with the DEA. They have to report patients that they think may be misusing or selling their medication to others. Doctors did not set out in life to become cops. My old doctor hated being in this position. And most doctors feel the same, so that some have decided to opt out of prescribing pain medication entirely.

Honestly, until today, I thought the case for not prescribing because of addiction, at least, was a good one. I've changed my mind. Doctors tell patients not to worry about taking loads of medications for life. Pills for depression, anxiety, high blood pressure, high cholesterol, etc., ad infinitum. Well, if it's for life, how come that's not an addiction? Almost everything can be controlled to some extent through lifestyle changes, but no, only pain seems to be singled out for the big lecture. Listen, I used to do everything one is supposed to to manage pain. I meditate. I get enough rest. I used to do yoga and excercise. Why did I stop? Too much pain. I don't like not doing yoga and exercising. Did I choose that? No. So, you who judge, I'm sorry, but fuck you.

And what if it is an addiction? Is it wrong to want something to relieve pain? Let me tell you this: there's a doctor around these parts who does colonoscopies and he undermedicates his patients. I had a colonoscopy from this guy and I was screaming for mercy. You would, too. I met a few other people who'd had the same experience. What did the doctor say about this? "Well, if you have a high tolerance for pain medication, you'll have to withstand some pain."

Ah, now we're being punished! Like it isn't bad enough living with chronic pain. This is sadistic, truly.

Every day I have to think, "Can I tolerate this?" Okay, I have times when the pain is background noise. That's most of the time, and I can deal with it. But it isn't now, and if I want some relief, here's what I have to do: I have to go to an emergency room and make a fuss. I can't just state how I feel. I have to prove I'm not just a drug addict. The hospitals and doctors call people who do this chronically, "drug seekers." I'm wondering just how many of these people just might be people in pain. Not mental pain, but physical pain. We are not getting treated properly. Period. I read the boards on fibromyalgia and arthritis sites. Noone is being treated properly. I won't say it again, I promise.

Please, DEA people, why do you make such a problem for us? Don't you have better things to do, like keeping drug dealers from shooting people or something?

I'm spending my day trying to keep calm. Laying on heating pads, distracting myself. I can't concentrate much. I can't even knit, something I love doing. Writing seems possible, for some reason. Maybe that's 'cause there's already a dialogue in my mind. I dunno. I'm feeling kind of stupid today. Pain does that.

I'm really quite angry. I've been brainwashed, y'know. I used to take painkillers on a regular schedule and I stopped because I thought "I am a drug addict." Then I tried to get some help to deal with going off of them and coping with chronic pain, but I was laughed at! Really, my old doctor and another doctor thought it was a regular laugh riot that I thought I was a drug addict. I was told, "Do you realize just how much of that stuff other people take?!" So, I didn't get any help. I wound up faking that i took too much to get some help, but that wound up as a disaster, 'cause they put me on Seboxyn and it made me feel horrible. I wasn't a drug addict after all, 'cause if I was the Seboxyn would have worked. It didn't.

So, I screwed myself royally. Now I'm on the drug seekers list. I am pissed off. No, I'm enraged.

I'll admit I tried some marijuana the other day. Y'know, all these people in pain use pot to help them out, so I figured I'd try it. It sure didn't work for me. I suspected as much, but I had to try. It made it worse, far worse. Everything that's background noise came screaming to the fore. What kind of pot do you folks who smoke medical marijuana smoke??!! I'm not sure I believe you.

Why the hell are drugs illegal anyway? Could someone please explain this one to me? Isn't it a social problem? Didn't prohibition prove that prohibiting substances only turns people into criminals and increase crime? You think people would be shooting each other in the streets if it weren't for illegal drugs? It's totally ridiculous.

It's about morals. I don't recall any passage in the bible that said "thou shall not take an opiate but thou can take a tylenol, which is far worse for your health and causes liver damage."

And lastly, people show up at doctors like Kevorkian's doors because they can't stand the pain. So, it's better to kill yourself than get some pain relief?

This society is insane. I'm sorry. I'm angry. I'm really, really angry.

Image note: American Opium Smokers-Interior of a New York Opium Den," drawn by J. W. Alexander from Harper's Weekly, 1881. Is this what people are afraid of? For your edification, most people who are in pain will have more energy to do things, not less, if properly medicated. I'd sure get up from my heating pads if I was. I recall two summers ago I could do gardening. Last summer, I could not. So, you tell me which is more "moral."

I know I'm a practicing Buddhist, but sometimes one has to speak truth to power, and that might entail some cursing. Cursing, I believe, is not breaking any vows. If I'm wrong, tell me.


Anonymous said...

Julie I think your comment was well past due. I have lived in chronic pain for over 35 years and the pain can be unbearable. I began when I was only 29 and believe me I do take care of myself and have done nothing to bring it on. My spine has been deteriorating for all these years and now am dealing with spurs, scolosis, DDD, Neuropathy, and have had fusions both upper and lower spine. If I don't go to pain management the doctors will not prescribe for me and the pain is so bad there are no words to describe it. I possibly have 3-4 half decent discs now and am told one day to expect to be bed ridden. If you wonder if I am angry, yes I am. The last neuro I saw set up an appt. for me to come back so he could check on a spur growing in my neck. When I got there he gave me a look and asked me just why I was there. I explained why he had asked me to make the appt and then he denied it and started yelling at me. Everyone heard it including his office staff. I went back only to gather my records. This is only just one of many experiences I have had. I have no problems going without meds and do not take them on a regular schedule as they tell you to, but as I feel I need them and can't function without them. I presently have my own website and work as an advocate for all those in chronic pain. I want to thank you for posting what you have. My experience was just one of many. I had surgury one time for a precancerous condition and had a doctor tell me he did not understand why I had the surgery. We are getting treated badly by more people than is known and it is time for this to stop. We are humans and I fully believe we need to begin to take control and maybe ruffle a few feathers here. Bless you Julie and I hope you get the help you deserve. Sincerely, Billie

Julie H. Rose said...

Thanks, Billie, for leaving a comment here. I had already put your Website on my links list. It'a great that you provide a place for folks to air their feelings and experiences. I could write an even angrier piece than this one after yesterday's awful experience with a new doctor. She shamed me about not getting proper care: "I couldn't get an appt. for six months!" Why did I have this (fill in the blank) surgery?: "Because I was told it was imperative!" Why did I go to the emergency room? "Because I can't find a new doctor and I couldn't even sit up without overwhelming pain!" Why didn't you get this (fill the blank) test? "Noone ordered it!" Etc ad nauseum and I know you get the picture 'cause you've had the same experiences. I now realize my "nice" ex-doctor (who moved on to a higher paying job) was completely irresponsible.

There needs to more advocacy and public awareness. I'd nominate myself to do something in this arena, but I don't know what it would be!

Anonymous said...

Julie, first I'll tell you I agree with you 100%. Before I go on, I'll tell you that I'm not very good with words or writing to express my feelings.
I'm one of the lucky ones that has a pain management Dr. who truly cares about her patients. Right now I talk 480mgs. of morphine a day. (I did write the mgs. wrong in another post). I have diabetes which causes neuropathy, a very painful condition, and I'm in remission from cancer. Plus other things which I won't go into now.
I'd like to see some of these Dr.'s take our place for a week. Would they be drug addicts because they took something for the pain. No, of course they wouldn't. They have no idea what we go through each and every day.
God bless you, Julie, for speaking up and I wish you well in finding a Dr. that will help you.

Julie H. Rose said...

Hi Anonymous! Thanks for your comments. You express yourself perfectly well, in my opinion.

I'm sorry to hear what you've gone through and glad to hear someone (you) has a good doctor.

Though I wouldn't want to wish pain on anyone, I understand your comment completely. It's too bad that people, especially those in a "helping profession", can't empathise without having walked in another's shoes. We don't have to feel what others feel exactly in order to have compassion, so it's a bit of a mystery.

I'm guessing that a heck of a lot of doctors suffer from burnout. I'm not excusing them because of that - don't get me wrong. It's just that I like to try to see what's at the bottom of people treating each other without the proper dignity we all deserve. When people are burnt out, they stop seeing others as individuals. And the healthcare system in this country is so broken, that it makes sense docs would be more stressed out than ever. Unfortunately, some of them take it out on their patients. Patients with chronic pain are ones docs don't want. They want people who are easy to fix, I'd say. Instead of dealing with this problem appropriately, we get consigned to the dustbin and are improperly treated. But not all, so I need to remind myself of that. Walking around with a lot of anger is not good for my health!

I have neuropathy too, which is a new development. So far, noone knows why. I've gotten so used to problems where "noone knows why". . .most of the reason for this is noone bothers to find out and I'm just to tired to follow through and wade through the mire.

Well, I could go on for hours writing about this. I'll stop here. Thanks for sharing your thoughts. Take good care of yourself.

Abbie said...

God bless you Julie! And You are so right, this is truly sadistic. I too am in unbearable pain, every day, every hour, every minute! and no one can help, doctors continually under medicate in out of control fear to comply with regulations, and it is getting worse every year. I have had 6 back surgeries, now after lower spine fusion have been living in pain for close to 20 years.

Julie H. Rose said...

I'm sorry to hear you are in so much pain. I've heard "your story" too many times!

Take care of yourself. Be your own advocate.