A letter I sent

To whom it may concern:

I have been diagnosed with atypical facial pain, allodynia, occipital neuralgia, and chronic migraines. My PCP is Dr. M***, and I see Dr. M** B****, a neurologist at ***** Hospital, but because I live in *****, when I have breakthrough pain that is not controlled by my medication, which is at this point Vicodin ES 1/2 - 1 every 4-6 hours as needed, I went to your emergency room for treatment because it was close and I had been treated well there in the past.

In the past I have received 2 mg of Dilaudid and 50 mg of Phenergan IM for this breakthrough pain and it has been effective. Until recently, there were no problems getting treatment so that my pain was at a manageable level. By this I mean bringing it down from an 8-9 on a 0-10 scale to a 4-5.

On Tuesday, July 1, I went to the ER. The staff declined to put me in one of the rooms in the back, putting me instead in a curtained area despite my informing them that I have hypersensitivity to sound and light when my pain level gets to this point. They also left me sitting in the waiting room with the TV volume up and people talking loudly despite me asking if there was anywhere else I could wait. The doctor I saw that day was less than compassionate. The only reason I got the medication I needed was because I insisted on it.

On July 12, I returned to the ER. This time, the physician - the one who had seen me the time before - once again made an issue about the dose of Phenergan and tried to have the nurse give me a lesser dose without informing me that there had been a change. They put me, once again, in a curtained area, and on the other side there was a child getting stitches in his face, which I understand happens in an ER, but they also told me when I asked for a room that there were no rooms in the ER, only curtains. Now I've been going to this ER for over 6 years and I know better. The physician never even saw me until after I got medicated. He never listened to my heart or lungs. He never touched me.

Tonight, September 1, I found myself in need of the emergency room once again. I have been fighting returning to this ER for 4 days because I remembered the treatment I got the last 2 times I was there and was concerned about things getting worse. When I got there this time, I overheard one of the nurses making a snide comment about me. See, one of the side effects of this disorder is that I have very sensitive hearing. I've overheard staff talking about me in a derogatory manner more than once. They put me in a room, and when this male nurse came in and asked me what I'd done for the pain, and I told him I had seen the neurologist today and that I had an appointment at the W*** clinic on the 14th, he remarked that I had told him that the last time he took care of me, rather like he didn't believe me. The doctor, this time a different one, came in and showed no consideration at all for the fact that I am increasingly noise and light sensitive when my pain levels are high. He informed me that he was not giving me what I had requested, but rather Toradol, Benadryl, and Phenergan. I told him that Dr. B**** had told me to have them call if they had a problem with the meds, and he said he'd call, but he wasn't giving me narcotics if I was taking narcotics already. Despite me telling him that I had pain on the right side of my face, he insisted on palpating my neck in a manner that induced me to cry out in pain, at which point he asked, "Did that hurt?" I don't ususally yell if I'm not in pain.

I have been an RN for 15 years, and I know some things about chronic pain outside of what I've experienced on a personal level. I know that people on narcotics for chronic pain are often treated with other narcotics for breakthrough pain. If the pain is bad enough that Vicodin doesn't help, then it is highly unlikely that Toradol is going to help, especially if it hasn't helped in the past.

I chose not to stay and be treated by someone who obviously thought I was engaging in drug-seeking behavior. It is humiliating enough to lose a career and my independence due to this situation; I don't need to be looked at as less than anyone else simply because I am in pain 24 hours a day, 7 days a week, and have been since October of last year.

I will not be utilizing any of your facilities in the future if this is the kind of behavior you accept and condone from your staff and doctors. It violates the patient bill of rights that states:
"Respect and Nondiscrimination. You have a right to considerate, respectful and nondiscriminatory care from your doctors, health plan representatives, and other health care providers."
and:
"Complaints and Appeals. You have the right to a fair, fast, and objective review of any complaint you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about...the conduct of health care personnel..."

In the future I will choose another non-affiliated facility for any necessary visits, even though it most certainly will involve more travel and a longer wait to be seen and treated. I did not deserve the treatment I received at your facility and I will not tolerate it any more.

Me, RN