PLFreitag

I had migraines starting at the age of 16. I went to nursing school and worked for 14+ years with them. I used my FMLA time if I needed a day off now and then. 2 1/2 years ago, I woke up with a headache that never went away. I have been diagnosed with Atypical Facial Pain, allodynia, photosensitivity, phonosensitivity, chronic migraine, generalized anxiety disorder, and major depressive disorder. I can no longer work. After finally finding a job I loved, I can't work. I can barely go outside without a hat and sunglasses on because of the sensitivity to light. There are days I can't do anything, and even on my good days I can't do more than 3-4 hours of anything productive. I fought for, and was granted at my administrative law judge hearing, Social Security Disability. I hate being on it, but I can't work. Other than the intolerance to light and sound, and stress being one of my migraine triggers, I take Methadone, Lexapro and Xanax for my nerve pain, and I am not very confident about working and taking responsibility for patients while I am under the influence of these meds. It would not be safe for any of us. I miss working. I miss my job and feeling like I was contributing something worthwhile to society. However, I had to decide I had to take care of myself. Part of that decision was assisted by my inability to drive an hour to get to work without being in tears from the pain. I now sell eggs from my chickens, a few aprons I make when I can, and a few other craft-related things. I look at each day as a gift. I am thankful for every day I can get out of bed and do even the minor things in our home to keep it running. I couldn't work now if I tried, and it's sad. Please take the time to think about the stress aspects of the career if you choose it. Nursing is very stressful, especially in the hospital setting. I wish you well. Trisha

Hi: I'm an RN. I also have Atypical Facial Pain, Allodynia, Occipital Neuralgia, Chronic Migraine, Photosensitivity and Phonosensitivity. I have had to stop working and am currently on disability because the level of pain medications required to keep my pain at a tolerable level is too high for me to feel I can safely provide patient care. I have gone to the ER several times for breakthrough pain because until we got my pain under control, I would have times where the pain was at a 9 for hours. I couldn't sit, stand, lie down, walk, or do anything to ease the pain. In fact, the pain from the AFP got so bad at times that even with my extreme sensitivity to sound, I actually had to scream to make the pain not feel so intense. I have been called a drug seeker. I was refused the meds my neurologist approved for my pain. How much, you may ask? 2 mg of Dilaudid and 50 of Phenergan, both IM, not IV. The Phenergan wasn't to potentiate the Dilaudid. It was to keep me from throwing up all over the ER. The staff was very kind the first few times, taking me immediately to a darkened room and talking quietly. The fourth time or so, I was made to wait in the waiting room with a blaring TV and poorly supervised kids. I was put in a curtain next to a screaming toddler getting stitches. I was informed that there were no rooms with doors, despite me being able to see them from where I was sitting - not to mention the fact that I had been in those rooms before. I heard the staff, both nurses and doctors, talking about me where they thought I couldn't hear...apparently they forgot about the phonosensitivity thing. I was a drug seeker. I was nuts. I was a junkie looking for a fix. It didn't matter that my neurologist approved the small dose of Dilaudid and Phenergan. I had one doc offer me Toradol despite the fact that I have a documented sensitivity and intolerance to NSAIDs. He said that even if he called my neurologist and got approval for the drugs, he wasn't going to give them to me because I was already taking narcotics. I left rather than be treated like that, and he promptly billed me for "services rendered," though it was more of a services denied situation. I have worked with chronic pain patients who are addicted. I've had them scream at me because I wouldn't push the Dilaudid, Benadryl and Phenergan through their central lines rapidly so they could feel the buzz. I've watched them get up after 3 minutes and head off downstairs for a smoke and goodies from the cafeteria or gift shop, and known they would be back up to their rooms 15 minutes before the med was next due, acting for all the world as if they were in excruciating pain. I've seen them get their IVP drugs, pick up their IV poles and jog down the steps for a cigarette. I know the games they play. However, I have also been on the side of the fence where I was in pain that had me begging God to let me die, and I have been treated like I was stupid and unaware of the patient bill of rights and my right to be treated with dignity and to be treated for my pain in a humane manner. I've been dumped by doctors for being in too much pain to ride for an hour to an appointment. I've had docs write me off because I have a diagnosis of anxiety secondary to my chronic pain. I've been denied proper treatment because my disability doesn't show up on any CT, MRI, or MRA scan, and because, "You don't look sick." When I was able to work, I saw my responsibility as a nurse as following the orders of the prescribing physician. If the doc wrote the orders for the pain meds, regardless of how I felt personally about the patient and their pain or lack of it, I treated them as prescribed. It is not our job to decide who is in pain and who isn't, or who is addicted and who isn't. I can usually tell the difference, but that isn't my place. My position is advocate, caregiver, helper. For statistical purposes, only 3% of chronic pain patients on narcotics become addicted to those drugs. 3%. That's not a lot of people. Unfortunately, we let those people, who are usually the ones we remember the best, affect our attitudes and perspectives on most, if not all, chronic pain patients, and we don't realize that our attitude shows and that the patient sees it and feels it. As one who has been on both sides of the fence, I am ashamed of many of my peers and the way they treat people in pain. I was taught that if a patient says they're hurting, they're hurting - no matter if we agree with their complaint or not. Pain is a subjective thing, not objective. There are no hard and fast ways to determine if John or Jane is really hurting or if they're lying in order to get drugs. It is our obligation as caregivers to provide compassionate, competent care for them and not let our personal feelings get in the way. I just pray to God that the people who think that all chronic pain patients are a bunch of cranky, demanding junkies are never on this side of the equation. Being denied adequate care, including meds, because of prejudice, presupposition, and archaic attitudes is not something I'd wish on anyone. We all deserve to be treated with respect and to have our dignity maintained.