Monday, December 31, 2007

What is your Doctor really writing in your health record?

I often wonder how many Chronic Pain Patients lives have been destroyed because of a doctor putting, not what you are telling him, but what he perceives that you are saying, in your medical records. As a person who has lived in Chronic pain for 25 years, the last 5 years being absolute torture and has been down this road many times, I can tell you, it happens every day. It has happened to me and if you are living in Chronic Pain, I can just about promise you that it has happened to you. Do you have a copy of your medical records now. If not and especially if you have been to several different doctors seeking treatment as most of us have, I would strongly advise you to obtain and keep as many of your records as possible. You might want to prepare yourself to be shocked!!, as to what you may find in them.

While a doctor's office should be a haven for the sick, that is no longer the case, especially for the person suffering from Chronic Pain. They still take your money, as they always have, and they will prescribe you anti-inflamatory, antidepressants, etc, but the minute you mention something stronger, for example, some type of opioid, you have just entered into an aggressive, non trusting relationship with your doctor. All of a sudden, you have become a drug addict, just looking for drugs. Never mind that you are in so much pain that you don't feel that you can go on any longer. Opioid phobia has just kicked in with your doctor and you have committed the unpardonable sin of asking for the only thing that will control your pain, especially if it is at the levels of mine.

Its not enough that people like you and me have to go through this demeaning process with the medical profession trying to find someone with the compassion and education to help us, we usually end up with junk and outright lies placed in our medical records that will haunt us the rest of our lives. Maybe that is one of the reasons that approximately 17,000 people suffering from Chronic Pain kill themselves every year.

Even though this happens everyday all over America, and even though it is a violation of Federal laws, State laws, its unconstitutional and certainly a violation of "human rights" it keeps happening. Why? Because in 1999 some accountant in the GAO reported that opioids especially
Oxycontin was being prescribed to much. Now what in the hell some accountant knows about what is to much to prescribe a person in Chronic Pain, I will never understand , but the committees and sub-committees in congress started holding hearings and hence President Bush and John Ashcroft started the "War on Drugs" with the help of the DEA.

Of course the doctors are now afraid to prescribe any type opioid for fear of the DEA. So what is going to happen to people like you and me? Nothing until we all get together and start demanding our rights. So do you want to be part of the solution or spend the rest of your life in pain. Personally, I hate doing this blog, because its talking about a subject that is my life, and I sit up late at night to write it and I am in pain. I spend a big portition of my life writing congress, working with advocacy groups and writing this blog. You may not be in pain now, but all it takes is an auto accident, a fall and you will find yourself in my world. So step up. We need you!!


Anonymous said...

I started having chronic pain in my teens. Years later they diagnosed me with fibromyalgia. So, for years, I took basic otc and used alternative treatments. I was so proud of the fact that I had chronic pain and I didn't need strong drugs. I had developed this 'attitude' that you could get better if you just wanted to! I hate to admit it, but I was quite smug about how I didn't need drugs!

Well, the next thing I knew, my pain was getting worse in my neck. I had an MRI and it showed problems, minor to moderate in 5 different levels. So, I had my first neck surgery for a herniated disk. My surgeon gave me all sorts of drugs to try, but I proudly threw them away! Bragging that I didn't need them.

Then, another level [C4-5] gave me problems again, and I had another case of myelopathy and had another surgery. happened. The pain, the headaches, the nausea oh my! The surgeon didn't mess up, but something changed after that surgery. Then a disk that wasn't repaired because it wasn't 'bad enough' ruptured and the pain got worse. Finally, nothing worked...except painkillers. And after I had exhausted all natural methods and even tried injections...I found myself one of 'those patients'. One request for a painkiller and I am treated like a crack dealer. The only drugs I have in my whole house for my present pain situation is some Lyrica and a bottle of Ultram...and no refills. I was only suppose to take 3 50mg/day--it doesn't do anything.

But, I am suddenly treated differently, looked at suspiciously, and whispered about. I feel like I'm part of some sort of underworld. It's weird.

Anyway, I wrote all of this to say that you never know when it will be you! You can be in pain right now and be proud of how you don't need drugs. All I can say is good for you. But, one day, it can change. And what you thought was pain, you realize was nothing! I only thought I was in pain until this new pain hit me. And the only thing that kills this pain so I can at least sleep, are painkillers. Just like the name says! Kills Pain!

So, please don't judge us. One little accident, and you could be one of us!

Jerry said...

I don't know where you got the idea that I was talking bad about chronic pain patients. I have personally been in severe intractable chronic pain for 25 years due to spinal cord damage from a medical procedure. I am a member of several Chronic pain organizations, I write my senators and congressman constantly. I know pain. It has consumed my life. I still don't know where you got that I was against chronic pain from the post I wrote. I was simply talking about words that doctors consider "red flags". You should read some of the other posts.


Anonymous said...

Jerry, I am so sorry for the misunderstanding. The 'you' I was referring were people reading the post.

I just started writing about my situation and I got lost in it. I forgot that I was commenting on what you had said. So, 'you' appeared to be directed at you! [I had just come from a bad doctor experience , I was upset.]

Anyway, I read and agreed with what what you little accident and it could be you and that 'you' was me, so I totally agree with you!

Anyway, I got lost in my speech...I am so sorry!

Okay, let me re-phrase...

---Anyway, I wrote all of this to say that a person never knows when it will be them! They can be in pain right now and be proud of how they don't need drugs. All I can say is good for them. But, one day, it can change. And what they thought was pain, they realize was nothing! I only thought I was in pain until this new pain hit me. And the only thing that kills this pain so I can at least sleep, are painkillers. Just like the name says! Kills Pain!

So, people shouldn't judge us. One little accident, and they could be one of us!---

Again, I apologize for the misunderstanding!

Anonymous said...

Thank you for clarifying your statement and that is quiet alright. Chronic pain is the most dehumanizing and stigamized disease in the country. Usually after a while your friends stop comming around, then your family. It is hard on your spouse because they can't relate to it. It can be the most lonley existance in the world. I have a little dog, a Bichon Frise, and I don't know what in the world I will do when he is gone. We can thank the Bush, Ashcroft, and Gonzalez administration for their "war on drugs" which has turned out to be a "war on pain patients". Don't think that congress doesn't about it also. They do. I don't think anything is going to change until until the 60-70 million people get together as a group and demand change. What is going on now is not only unconstitutional, it is profiling, and a violation of human rights. Thank you for your comments. That is the only thing that gives me the courage to keep writing this blog.

Good luck and May God bless you.


wolfy/monkeyboy/caspar said...

ok---logistically----how do we become the juggernaut we need to be? Pain forums and blogs do little but offer sufferers of CP a place to gather, educate themselves, and support each other--granted, completely invaluable to the CPP who has been isloated, economically decimated, and completely demoralized (not to mention the unwilling victim of unrelenting poke-your-eye-out pain)---but as for becoming a force to be dealt with, to foment the cohesiveness and direction that is desperately needed, it is lost in the individual medical history, commiseration, and general pissing and moaning that is done----we hear "write/call your political representatives", but its like trying to bring down the russian government by throwing beets at it from india----poor planning, poor participation, poor turnout is killing us (as is poor understanding of CP, poor education of the "caregivers", lack of moral fiber on part of same, lack of research---but thats a whole 'nother post...)---WE DESPERATELY NEED A UNITED, FEARSOME VOICE, or i'm afraid it will be exactly the same for us, our families, and the poor bastards who are destined to join us on this road....