Posted by Ilene on October 22, 2004, at 11:26:37
In reply to Be thankful for their honesty » Ilene, posted by yznhymer on October 22, 2004, at 10:55:03
> Looks like I'm in the minority here, but be thankful for their honesty. As a rule, honesty is the best policy and I don't see this falling into one of the exceptions.
>
> First of all, we all kow the liklihood of remission is small even before they lay the news on us. My understanding is only about a third of patients achieve remission from meds, and another third receive only partial remission at best. A third get no relief at all. You've been through umpteen drug trials. The math is not hard.
>
Right now I'm in partial remission. I think the drugs are working, but not completely.
> Second, would you really be better off having your docs mislead you? Would your depression be any better? Shouldn't you know the liklihood of success before you take on the discomfort and potential health risks of another drug trial? Drug trials are not benign activities. You may decide to go through them anyway. I do, but I pick and choose a lot more carefully now than when I started this journey.
>I think the drugs are keeping me afloat, but some of the SEs are getting me down. I've been gaining weight, which is depressing me.
> Third, your doc may be doing you a big economic favor. You don't want your doc mincing words when you're trying to access whatever benefits you may be entittled to. For example, I went out on disability retirement at virtually full pay three years ago due to my depression because my pdoc was willing to say (honestly)that my depression was likely to be permanent or last longer than a year. I can't tell you how huge that was in improving my life.
I haven't worked enough to get disability. My husband supports me. I'd be much worse off if I had to work.>
> Fourth, improving the quality of your life within your limitations is not a bad thing. Meds, therapy, exercize, nutrition, supplements, alternative treatments, etc. individually may not provide remission but cumulatively may provide significant relief. Instead of pinning all your hopes on drug cocktails and feeling like a failure when they don't work for you, you've got some motivation to explore a much wider range of treatment options.
>I've tried some of those remedies. Exercise triggers my chronic fatigue syndrome. Magnesium supplements seem to help a little. Fish oil was a failure. I will probably start psychotherapy soon, but my previous experiences with that were unsatisfactory. Drugs were what worked in the past.
> Fifth, in the final analysis, your doc's statement is just an opinion. You're free to accept or reject it, or find reason to believe you're going beat the odds, be the exception. People do that and I commend them for it.
>I'd like to prove them wrong.
> I know what your doc told you is hard news to take, especially when one is feeling vulnerable to begin with. (Like you, I was somewhat shocked when my pdoc shared his opinion about the liklihood of remission with me and it took time to process.) Hopefully your pdoc delivered it with some compassion or at least professionalism like mine did. You're entitled to those. Your doc is not giving up on you, he's not refusing to work with you, he's not encouraging you to give up. He's just acknowledging a difficult truth: you (we) have a difficult row to hoe.
>The pdoc who delivered the bad news supervises my regular pdoc, who is a resident, and I'm beginning to dislike her. She's just too inexperienced and "goes by the book". I'm questioning my decision to seek treatment at a teaching hospital, because I think my role as guinea pig is more important to them than treating me effectively. On the other hand, my previous pdoc was very supportive but worried too much about SEs and wasn't aggressive enough in treating me.
> My point is that honesty and compassion are not mutually exclusive, nor are honesty and hope. Despite the fact that your doc thinks you're unlikley to achieve remission with currently available treatments, there is hope that research and new things in the pipeline may be the breakthrough you need.
>Cymbalta seems to be the great hope right now, but it doesn't seem much better than Effexor, based on what I've read.
> Ultimately, we are responsible for generating our own hope. Pdocs don't cure us or even make us feel better. At best they can show us the way, provide us with tools.
>
> I wish you the best...
>
> MI often wish I could dispense with the pdoc and write my own scripts.
Thanks for your thoughts.
poster:Ilene
thread:404563
URL: http://www.dr-bob.org/babble/20041018/msgs/405873.html