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I'm not sure why it is that Dr. Jerome Groopman keeps coming up in blog posts, other than that I really enjoy his writing, and I still appreciate his excellent article on RSD in the New Yorker (October, 2005, around the time I was on Neurontin, so you know it's good if I remember it.) But today CNN had a piece about
When it's time to fire your doctor

I've only had two doctors I've ever decided not to go back to. One, I honestly thought was an ***. The other one and I don't see eye to eye, and don't communicate well. That's okay, I don't expect to love every doctor... Oh, and there's the one doctor who was a bit too rough with a needle, but I still feel bad, because that doctor was nice. The one doc I really wouldn't go back to if my life depended on it, prescribed an EMG. An EMG is really hell on earth for an RSD patient.

It involved, at least for me, having electrical shocks to my painful foot and leg, and then contracting muscles against needles. That doctor, despite specializing in neurology, did not figure out that I had RSD. And that doctor spent more time asking about blindness than anything. Here's a very helpful hint: If I come to you for foot pain, I am probably not asking you to resolve my blindness.

I suspect that now, I would have been much more rude, but, believe it or not, I was a somewhat nice person back then. I also suspect that an EMG now would make me pass out, since the RSD has gotten so much worse. I'm thankful that all of the doctors who treat me are close to on the same page, and actually respect me as a whole person. They listen, even when they disagree. They really seem to care about what is important tto me.

I noticed a quote which exemplifies why I love my doctors. It is because they don't make me feel bad. Even when they're telling me something I do not want to hear, they don't make me feel bad. And that's exactly what the neurologist did do. Here's the quote, but go to the article I linked above for the whole thing because it's definitely worth it.

DiMatteo says sometimes you just have to go with your gut. "For example, if a patient
says, 'My pain is still there,' and the doctor says, 'It shouldn't be -- this treatment
works for other people,' and you walk out of the office feeling badly, I don't think
you should stay."I bring this up not to just complain about a doctor and then talk about how much I love my current doctors, I think it has validity for people with RSD, of course, and also for those who are blind. we should never automatically accept that there is no way to help us with our pain. Other people might get better with Neurontin, but because I didn't get better doesn't automatically mean that other things won't work. I can understand the frustration doctors must feel when a patient doesn't get better, but for the most part, that is not our fault. There may be people who enjoy sitting in a doctors' office for an hour, spending money on medications and treatments that have side effects or undergoing procedures, but most of us wouldn't do it if we felt good. Because, you know, it's just so much fun to go through multiple tests and blocks and meds and such (sarcasm).</p>

It is easy to feel that things can't get better, and take a doctor's comment like that at face value. And, in some cases, there aren't a lot of treatments available, but there can be ways to achieve goals. It's not realistic (not like I'd want it anyway) to expect to walk into the eye doctor's office and get 20/20 vision, but it might be reasonable to find ways to relieve the eye pain and prevent further vision loss. In my experience, the best doctors don't just treat a pathology, they work to achieve goals with you. And, for me, that's the primary quality I'd look for if forced to find a new doctor ever.


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Aug. 17th, 2007 02:41 am (UTC)
that quote
It reminds me of a doctor's response to my reaction to statin medications for cholesterol. "Fifty million people can take Lipitor!" I walked out and never looked back. Apparently I am not one of those people. I lowered my cholesterol with supplements, which he was yelling at me about. (I learned later that he was exaggerating about the fifty million people anyway.) It's really important for doctors to be open-minded and think outside the box sometimes. Medicine might be a science, but people are not.
Aug. 26th, 2007 09:55 pm (UTC)
Re: that quote
That doctor's comment has a huge gap of logic, even if 50 million people could take it, that says nothing about the other 200 million. How frustrating!
Aug. 17th, 2007 06:58 am (UTC)
Hey. I found this rather interesting given the recent events of my life. When I was being seen on Sunday night in the emergency room the neurologist that was treating me asked me who took care of me. I told him that I lived alone. He asked me how I could prepare my meals, how much education I had, stuff like that. If I'd been able to talk more easily I would have asked him what those questions had to do with my current situation. Actually, this brings up another point. What happens when you're in a situation where you really can't advocate for yourself or communicate with the people you're working with. I found, and am still finding, it really hard to get across my needs, simply because the words just aren't making it from my brain to my mouth. It's frustrating, and when it takes me 30 seconds or more to get out a couple of words it just is really innefective. At least I'm starting to be able to manipulate my hands a little bit better so that I have a little more control of the keyboard. Now if only I could handle silverware ... SMILE!
Aug. 26th, 2007 09:59 pm (UTC)
I'm sorry it's taken me so long to reply to your comment, my email inbox has won the fight, and I just don't want to admit it (smile). Anyway, as to your question, I'm not sure what happens, only that we aren't really prepared for the reality of it being hard to communicate when we're sick. One of my goals is to create a "hospital packet" with my information on the top, info on RSD and some hospital protocols for RSD and basic info on blindness. But I also have heard the suggestion to have a family member or friend advocate for you. That isn't always an option though.
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