This is a wildly unreasonable amount of pain. I would go to the hospital if I had any reason to expect to be taken seriously, but the one time - the one time in seven years of constant pain - that I went to the ER because of increased pain that I could not tolerate, the first thing the ER doctor said to me was "We can't give you anything intravenously." Being a chronic pain patient in the ER for pain is not a positive experience.

I don't actually know what it feels like to be simultaneously impaled rectally and vaginally, but that's the best description I can give. It woke me last night, and the pain was so intense I thought I would vomit. In the morning, it had calmed some but was still far above my average of 7 on all of our favorite pain scale. Since 9:00 this morning, it has fluctuated between that and "someone is shoving the spike farther up my rectum." It is truly not okay.

Why is it that I do not have something to take that simply knocks me out on the infrequent occasions this happens?

My state needs to allow medical marijuana. Or medical cartoon anvils to the head.


Oxycontin Decrease

At my last med appointment, I asked my NP to decrease my oxycontin back down to 10 mg 3x daily. It's too damn expensive - went way up six weeks ago for no apparent reason (it was an increase of 24%, if I remember correctly). It's not that we can't afford it. We can. It squeezes other things, but I don't think the benefit I realized was worth the cost differential. I doubt oxy would make a significant dent in the pain unless I took a high enough dose that I couldn't function. I would rather function. You know, most days.

I fucking hate the pharmaceutical companies.

Hypericum Perforatum (Common St. John's Wort)

No idea if I ought to expect anything, but I am trying it. I expect the worst thing that could happen is some gastro-intestinal upset. Big deal. If I expect nothing, maybe I will be surprised?



I fucking hate this disorder. It needs to stop.

About Dr. Andrew Goldstein

I already posted this as a comment in response to Claudia's question about my experience with Dr. Goldstein in Washington, D.C. So if you've read that, this contains nothing new.

I really liked him. He's got about a 50% bad rap online, if one searches around, but I went anyway. I have so much pain I decided it doesn't matter if he's a complete ass, so long as he doesn't hurt me unnecessarily. Maybe he's an asshat who can help, right?

But...I liked him. A lot. He's quite direct, very bright and knowledgeable, and he doesn't screw around. He knew I wasn't coming to him for treatment - just for direction, and he didn't try to "sell" me on having him personally do any of the things he recommended. He was empathetic about the pain and my anger and despair around it without being "mushy." The man hugged me in the hallway as I was leaving. (It felt, and was, appropriate.) He spent a good deal of time with me. Hardly an ass.

Now, if one went to see him wanting only to hear what one "wants" to hear, then he'll come across as bossy/pushy/arrogant. He talks fast and doesn't talk "down" (maybe because I'm a professional and talk like I am, but maybe he talks to everyone like that, and some people experience it as arrogance or showing off?) Don't expect to be treated like a child or royalty, and you'll appreciate him for treating you like a patient with awful pain who has tried lots of things and doctors already.

I actually asked him about his reputation online, in the middle of the exam portion of my visit. Hard to believe I did that, but I was really liking him, so I asked what he thought it was about. His thoughts matched mine, though he added one thing. He said his wife (a dermatologist) once told him that if he was going to specialize in something so narrow, where there is a handful at best of treatment possibilities, he'd "damned well better be the best at it." Maybe that's arrogance, he said, but he figured if he could not be the best at this, he should do something else. I can appreciate that.


Washington DC & Dr. Goldstein

I feel an obligation to readers to detail my visit with Dr. Goldstein, and I am dragging my heels because my mood has plummeted. My husband asked me why last night, and I don't have a good answer. It's counterintuitive: the meeting with Goldstein went well, and I came home with things to try, but since the trip I have been feeling distraught, exhausted, moody...slow.

More when I feel up to it.


Where's My Pain Decrease?

It seems only fair that if I increase my pain meds by 50%, the pain should decrease by an equal amount. Stupid world. My cognitive clarity has decreased by about 30%. I would take that much less pain. I'm willing to negotiate!