Pain Changes Things

I'm back from a small blogging break. It's been a frustrating time. I've made the choice of Hopkins for my care and that has meant weeks and weeks of waiting. Members of my family came for a visit and thought cleaning, buying some new furniture would change something for me. It didn't. They want to blame my frustration and anger on "drug withdrawal" when in reality, I'm just frustrated and angry. Period. But, it's easier to blame "drug withdrawal" than accept and discuss that the family member you know and love has been changed by months of pain, frustration, isolation and having to go against most doctors to get the help they need. I've had to take charge of something that I'm not qualified to take charge of. Constant pain is maddening. Dealing with these doctors, almost equally as maddening.

My decision to go off all the drugs -- turned out to be a good one despite the fact that my pain doctor (number 2) told me this would put me in more pain, I would be doing harm to myself, and that it was completely against his medical advice. As I sat in his office a patient came in to get a refill of her Methadone prescription. She was so doped up I'm surprised she could even find the office. She even waved to us like a drunk person. That's how much Methadone I would need to be out of pain. And I do believe Methadone would take me out of pain. I'd never get a diagnosis though and I certainly wouldn't be "functioning" in any real sense of the word. It's frustrating to know there's something out there that could take me out of pain but at this point I have to keep enduring if I want to get any answers. Even at the starter dosages I was falling asleep in the middle of conversations with my Husband. I am not a doctor; how are people supposed to make decisions like these? Even my Husband tells me I need to trust my doctors. But I can't do that. Particularly when I seem to be doing better distrusting what they say. All the drugs that I was on were only giving me the negative effects -- constipation etc. which I think made my pain WORSE-- and weren't helping one single bit with my original pain.


I'm waiting for my return visit to Hopkins which will be just another one hour consult before I can have even my first diagnostic nerve block there. It will likely be a month wait after that consult. People die waiting for doctors, procedures, organs. My family seems to think I should get moved up in the line just because I'm in pain. I may be in pain but I'm not dying. I'm certainly not going to get moved up in the line. Dying people don't get moved up in line. I called, pled my case, and was told "go back on your drugs" if you can't wait. Nice.