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!

On My Treatment at the U of MN


I saw Angie Brucker in the pain management department at the U - I didn't see someone who was trying to treat the problem (i.e., trying to resolve the underlying issue). I recommend steering clear of her. My experience with her was that she was interested in getting me off pain medication while advising me to seek more therapy (I see my analyst twice weekly) with their therapist and just accept that "sometimes people have to go to work when they're sick." After all, she goes to work when she is sick sometimes.


Dr. Frank Tu

The doc in the Chicago area to whom I referred in my last post is Dr. Frank Tu.

I am not certain this is his most recent contact information, as I have not yet looked into seeing him. He's not terribly far from me (at least I would not have to fly), so he's next on my list, after Goldstein. Based on internet discussion of Goldstein, I may wish I had gone in reverse order, but I figure I'll end up with both of them some time or another, so perhaps order isn't terribly important.

We increased my pain meds by 50% yesterday (from 10 mg oxycontin X 3/day to 15 mg x 3/day), so I may be less coherent than I think I am. I am sleepy and sad and I want to go home.


State of Things/Anyone Know the Gynecologist in Chicago Area?

Higher pain level lately. Hard to tolerate psychologically. It's tough not to hide in my bed with an ice pack and retreat.

I have made an appointment to see Dr. Andrew Goldstein in Washington, DC in late April. When I told the NP who manages my pain meds that this morning, he was encouraging and said there is another man who is known in the (small) circle of people who treat pelvic pain competently - one in the Chicago area (might decrease travel cost, as I could drive there instead of flying). He's tracking down the name for me, but doesn't have it yet. He thought it was "Fong" or something like that. Anyone happen to know?




I didn't realize it yesterday, but noticed this morning that 1/11/11 is the fourth anniversary of the sudden onset of constant, intense pain.