The Perils of Pain...Caution or Cruelty? Whats do you think...

Do you remember that scene in "Terms of Endearment" when Shirley MacLean's character is losing it...well if you don't remember watch the clip below...

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I think when anybody gets the diagnosis of a terminal illness their biggest fear is how they will deal with the pain...it's the pain that is more scarey than the actual dying part, and they would be right. So what is our best hope for a peaceful death? One without pain, or at least with pain well controlled. But there's a possibility that may not be the case, as celebrities and the like are dropping like flies having overdosed on amazing combinations of drugs, legal and illegal. We who suffer with chronic pain do so at our own peril. There is a "Patient's Rights" document regarding chronic pain, that lays out the rights of a patient to be given good pain management...but does it happen? My experiences have been very dodgey to say the least. The whole idea of administering narcotics has become a sinister affair...I feel guilty for asking for pain relief! As if I am under some suspicion of being a "drug addict"! I wait for an hour in the waiting room on not so comfortable chairs, while every bone and muscle in my body, neck and head are pounding to the point of nausea. When I meet with my practitioners, we go through all the typical questions, and I'm met with of course information about other therapies such as naturapathy, and accupuncture that I cannot afford anyway, and there is an air of tension in the room. It's palpable! This previous week we had changed my pain medication because of breakthrough pain, but I could not tolerate it. I was wretching, unable to eat, unable to go grocery shopping (we had run out of food) and so totally spun out, I had to go to bed for 3 days...but it was suggested that maybe the dosage was too low?! I am very close to losing my temper when she announces that there really isn't anything they can do until a week on Monday...a week more with no relief from pain, but I am responsible for the care of a 12 yr old boy with ADHD and I don't have relatives just down the street to come in and take my place. I have been ill for 9 years, unable to work for 7, and started narcotics maybe 5 years ago. I have never received the full dose as decribed on the jar, actually 50% less!!
When she tells me again that they can't help me (I had called the office 3 times describing my reaction to the dilaudid and requesting help)and I finally let go and tell her that is unacceptable...there is no way I can go through March break, or any other break, without proper pain management. I understand they need to be cautious and I don't want to become addicted. I have, in the past, stopped taking narcotics, voluntarily, to see if I could function without them, and avoid this awful struggle of aquiring and managing narcotics...but until someone can provide me with a maid to clean the house, do laundry, groceries, be a mom/dad, and do yard maintenence...then they HAVE to properly address my pain without making me feel like a criminal!
This life is a struggle and having your care team on your side is paramount...they just have to get this...rather than assume that someone in chronic pain can just wait...and wait...and wait! Not anymore. This has to change and I'll use my patients right documents if that's what it's going to take. It's funny but we "disabled" people sureley have to fight hard for everything we get.