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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 14 of 14. This is the beginning of the thread.
Posted by Racer on May 1, 2004, at 12:26:57
OK, this isn't related to the liver masses, this is medication related. I know, been here before, but I need my hand held again. Damn, I'm pretty pathetic, aren't I?
Anyway, my therapist made an appointment for me to see the doctor, told me that the clinic had been reluctant to make the appointment, because I'd cancelled so many now -- you know, the oh-so-subtle, "better show up this time, or we'll just withdraw support from you" sort of message -- and I'm out of excuses. We have been talking about what to do and how to do it: what is really bothering me, and how to express it to the doctor. (Mind you, this all feels kinda like a simulator exercise, since everything else I've said seems to have made the rounds to everyone involved in the treatment team -- and the results all seem to come from what someone else says, not from anything I say to anyone. Hey, guys, can you make me feel any more powerless? Gotta start thinking hard on that one -- you've really shown a lot of imagination so far. I feel as if what the therapist says to him out of my presence -- whether or not it's a distortion of what I've said -- is probably going to have more of an effect than anything I say directly. Tell me again why it's worth the effort to try to say anything at all?) Now that it's "real" -- now that the appointment is made, and I know I have to go to it no matter what, I'm overwhelmed and terrified again. (Maybe my therapist could suggest to him that he not wear that red suit with the tail this time?)
I've got two main issues with all this: the communication problems, especially the fact that four other people have brought up my strong reluctance to start Effexor again -- but he hasn't mentioned it to me. Getting so much pressure second hand sure doesn't help me to trust him.
The second issue is my reluctance to go on any anti-depressant again. It seems like I'd give up so much, for so little in return. Yes, I recognize that that perception is part of the depression, and I even think I have a partial solution to the problem: a pdoc who works a little harder to EARN my trust. Oooh, maybe he could do that by, say, pretendting to listen and pay attention and consider what I have to say? And, just for fun, let's pretend that I didn't hear so many things from other members of the "treatment team" that totally negate what he says to me!
So, let's start with the first part: my problem with the communication. Here's what's happening in me over it. First I say, "OK, I *can* do this. All I have to do is be clear in myself what's bothering me, and what I want to convey to him." The problem is that doing that is really *not* as easy as it sounds. I have a really hard time defining my concerns, and an even harder time figuring out what I want. Or, at least, figuring out how to convey what I need from him. I can say here, "gee, I don't feel as if I can trust him, because there's such an inconsistency between what he says to me and what I hear from others." When I think of saying that to him, though -- yeah, sure, and don't get hit by that flying pig.
Insecurities? Sure. I'm convinced that if I say that he hasn't broken a sweat in trying to earn my trust, I can convince myself that it's not his responsibility to do so; that I'm at fault for not trusting him; that I'm at fault for thinking that trusting the doctor is relevant to my treatment in the first place! After all, it's the drugs that count, right? Whether or not I trust the doctor has no real bearing on whether or not the drugs work, after all.
So, then I'm back to wondering why it's worth the effort of trying to communicate any of this, when it's obviously my fault in the first place for being too needy (ie: wanting to feel some trust for the doctor), for needing the wrong thing, and for being unable to take responsibility for my own failure to respond appropriately.
(Yes, this is the sort of thing that therapy is supposed to help with. Guess what? I trust you guys more than I trust the therapist yet, especially since I think most of you have been through this so your understanding is not limited to an intellectual abstraction.)
Anyway, starting from there, can you offer suggestions and help clarify the issues and which really are relevant and which I should keep to myself?
Posted by Racer on May 1, 2004, at 12:32:30
In reply to Fear, anxiety, all the usual suspects..., posted by Racer on May 1, 2004, at 12:26:57
About the insecurities: I'm also afraid that all support will be withdrawn from me. You know, they'll abandon me entirely. It's not so far fetched, since that's what it sounded like when the therapist said that the clinic was reluctant to make the appointment. I'm afraid that if I say, "gee, Doc, you haven't exactly worked up a big sweat in the communication game with me..." he'll respond by saying, "you're so wrong about that, I've done more than enough for you, you want to much and don't do enough yourself -- get out!"
Don't much matter what anyone says, that fear is there and it is REAL whether or not it's reasonable.
Posted by shar on May 1, 2004, at 19:37:19
In reply to Fear, anxiety, all the usual suspects..., posted by Racer on May 1, 2004, at 12:26:57
Racer,
What we have here is emotional stew. Carrots, potatoes, onions, broth, maybe some beef if you're not vegetarian. All of it swirling around. The only difference is that real stew turns out tasty, and emotional stew just leaves us confused or paralyzed or fearful.You brought up a number of issues, very important ones. First, about trust. You've had a relationship with this doc now for a while. Unless a miracle occurs, I wouldn't expect it to change in nature. Or I could be WAY wrong. But, it seems likely he's not going to change, and the question is, given that, how can you convey to him your concerns (which you have every right to do, and he is not being altruistic in seeing you; it is a partnership).
Before their conveyance, you have to know what your concerns are. I think that is sort of like taking the stew off the stove and separating out every carrot, onion, potato (and maybe beef) and putting it into its own identifiable little pile. When it is all swirling around, it's hard to identify the carrots/fear, potatoes/trust, onion/what you want. Especially when there is broth involved.
It seems you have been on Effexor before and it did not do much good, except to make you feel sort of numb and give you weight gain. If that is correct, he needs to hear just the facts. And then, I think, you get to ask what else he could suggest. Something with a different mechanism of action perhaps, so you are not just repeating the past.
I know you are caught in a milieu that is not good--secondhand information, statements of the 'he-said/she-said' variety, etc. Not a good situation. So, I would want to clarify as much as possible, who said what. If you can walk in more or less matter-of-factly, I think you might have a chance to get some clear information. I would want to know, is Effexor the only drug I can take? Given my history, I'd like to know if there are any alternatives.
Well, you get the idea. If my T alluded to this or that, or he said-she said stuff, I would probably be rather point blank in asking "is that my only option?" In other words, what ARE your options?
Well, these are just my insane ramblings on an empty stomach. I do believe you have the right to know what your treatment options are; surely in all of medical history there has to be more than one--which has not worked in the past.
Good luck.
I wish I had some stew.
Shar
Posted by SLS on May 2, 2004, at 9:06:28
In reply to Re: Fear, anxiety, all the usual suspects... » Racer, posted by shar on May 1, 2004, at 19:37:19
Hi Shar and Racer.
> What we have here is emotional stew. Carrots, potatoes, onions, broth, maybe some beef if you're not vegetarian. All of it swirling around.
What a great metaphor.
I know what that's like. You don't know where to start. It's even hard to identify the vegetables because they move and mix too fast in the roiling brew. It's just a mess.
> The only difference is that real stew turns out tasty, and emotional stew just leaves us confused or paralyzed or fearful.
This produces great anxiety and overwhelming stress. This alone can prevent one from identifying, organizing, and processing issues in a meaningful way. Addressing the anxiety should probably take priority. It's no fun being in a perpetual state of anxiety in anticipation of an impending doom. Nothing makes sense. Life does not seem "do-able". I've been there too many times. Actually, I'm afraid that I might be heading in that direction right now. It's a very scary place.
Racer, you've got a bunch of stuff going on in your life that I wouldn't have a clue how to help you with. It is obvious from your writing that you have a very strong drive to survive and overcome tribulation. I'm sure that it will help get you through this difficult time. The only thing I know how to do for you is pray, so I'll get right on it.
- Scott
Posted by Racer on May 2, 2004, at 9:23:23
In reply to Re: Fear, anxiety, all the usual suspects..., posted by SLS on May 2, 2004, at 9:06:28
Thank you. I guess you've read the earlier posts, so you know about my medical concerns? They're actually kinda easing this right now, because they're immediate and I can see the problems. Having a focus is always good. I'm fortunate enough to have two: one being the really sucky patient care; the second being the worry that it is cancer.
(For an idea of the second one, no one will give me any hard information. I called someone I know at the NCI, and even he wouldn't tell me more than, "Gee, don't think about it!" Hello? How can I not think about it? I do know that a malignancy on the liver is a Bad Thing, and that the timing of the diagnosis doesn't matter much because most primary liver tumors are inoperable, and if it's a secondary tumor, well, that means it's pretty well metastasized. Guess what? I can figure out what that means all by myself without even having that MD. I'd feel better having hard facts.)
And Scott -- I'll take all the prayers I can get, with thanks. I also appreciate your support with the med questions. (Especially since it's deeply ingrained in me that symptoms like anxiety are "only" psychological, so they don't count. I never realized how much anxiety I suffered, but I'm finally starting to see it now. You helped a lot with that. Thank you.)
Thanks for everything.
And what's going on with you? Anything you could use a little support for? It doesn't sound as if you're in a great place right now? I'll offer you anything I've got -- except the cat.
Posted by Racer on May 2, 2004, at 14:38:31
In reply to Re: Fear, anxiety, all the usual suspects... » Racer, posted by shar on May 1, 2004, at 19:37:19
You can be my bay leaf, Shar. May not be large, but somehow makes it all come together.
Thank you for your analogy, your post gave me some ideas. The biggest problem right now is that I'm being hit from so many different sides, I can't tell you which way is up. It's like being caught in an avalanche -- only I can't spit to see which way is up.
What I'm going to try to do is to sit down later -- after I do the housework (alone) and a rearranging project (alone) and the laundry (alone) -- I'm going to try to write some of it down. I'm going to try to pick out the carrots and celery -- which I don't like anyway -- and try to separate the meat, which I'll take in to therapy this week.
(Biggest problem, of course, is that this fear of the doctor is a microcosm of the rest of my problems. Solving this one will solve EVERYTHING -- if you know what I mean -- so trying to do it in two sessions this week? Sure. Right. I'll still be in major turmoil by the time I get in there. Still, if we can get SOMETHING accomplished to get a good result when I see the doctor, and then we get a good result from the doctor, maybe it'll help build that flight of stairs to get me out of the cellar again. Cross your fingers, eh?)
Posted by SLS on May 3, 2004, at 11:12:16
In reply to Re: Fear, anxiety, all the usual suspects... » SLS, posted by Racer on May 2, 2004, at 9:23:23
Hi Racer.
> And what's going on with you? Anything you could use a little support for? It doesn't sound as if you're in a great place right now?
I suffer from depression that is most likely associated with a bipolar spectrum disorder.
I began to respond to the addition of a drug called memantine to the other drugs I am taking. For over a week, the whole world was different, and my mind was awakening from a very long hibernation. So many times in the past, I have shown a positive response early in treatment, only to watch it disappear within a matter of days. It has been 22 years since my illness was first diagnosed and treatment begun. With the exception of a 9 month period in 1987, my only experience with the real world of healthy human experience has been these brief transient responses. Over the last few weeks, I was convinced that the nightmare was over and my life begun. I was able to see and feel life with new perspective, and I started to make plans.
I have tried almost everything. I know that many people say this, but the only standard antidepressants I haven't tried are Serzone, Celexa, Luvox, and a few tricyclics. After adding in mood-stabilizers and investigational drugs, the number exceeds 60. The list represents only the individual drugs, and does not include the many combinations of these drugs that were tried.
I'm pretty upset right now. Depressed. Deflated. Despairing. The meds just stopped working. It has been four days since I last felt anything positive. I know that in the grand scheme of things, four days is not enough time to come to any conclusions, but I feel that to hope for the return of an antidepressant response is just fooling myself, especially in light of my treatment history. I genuinely thought that I was on my way to wellness. I am demoralized and resigned to another failure. I feel like lying on the couch and disappearing. I wish it were that easy.
- Scott
Posted by judy1 on May 3, 2004, at 11:41:48
In reply to Add bay leaf » shar, posted by Racer on May 2, 2004, at 14:38:31
and hope you have some good news to share soon. please let us know how it goes with your dr. and I think your therp should be able to help you sort through things so you don't feel so overwhelmed.
take care of yourself- judy
Posted by Racer on May 3, 2004, at 22:47:52
In reply to Re: Fear, anxiety, all the usual suspects... » Racer, posted by SLS on May 3, 2004, at 11:12:16
Oh, how rotten. I won't say I know how you feel, because obviously I don't, but I will say that I do share your frustration and fears about medications and failures. I complicate things by wanting so much to please the doctor that I convince myself that I'm feeling better and starting to respond, even though I'm not. That conflict between what I actually feel and what I'm trying to convince myself I feel is a real killer. And it's scary as hell to think that "nothing" will help.
I'm too tired to write much now, but I will try to get back and finish this tomorrow. Until then, you have my bestest best wishes.
Posted by SLS on May 4, 2004, at 7:03:20
In reply to Re: Fear, anxiety, all the usual suspects... » SLS, posted by Racer on May 3, 2004, at 22:47:52
> I complicate things by wanting so much to please the doctor...
I can't tell you how many times I've apologized to my doctors for not responding to their treatments. Silly. I still do it.
- Scott
Posted by Racer on May 4, 2004, at 8:52:59
In reply to Re: Fear, anxiety, all the usual suspects..., posted by SLS on May 4, 2004, at 7:03:20
You know, I have cancelled all my doctors appointment for months now. I'm too afraid to go in there. This time, I've been told I *have* to go, or I won't be able to make another appointment. Guess what? I'm terrified, and this is just added pressure that makes it worse. I can't even tell you why I"m so scared.
But I feel a lot better knowing it's not just me. Thank you.
Posted by NikkiT2 on May 4, 2004, at 9:07:06
In reply to Now *that* makes me feel better... » SLS, posted by Racer on May 4, 2004, at 8:52:59
If you knew HOW many docs / psychologist appointments I have cancelled.. I'm so bad at it.. I put it down to "social phobia" and me playing the avoidance game..
I'm getting better at it now.. but especially if they're in the morning I still cancel occasionally..
Nikki xx
Posted by Racer on May 4, 2004, at 11:31:22
In reply to Re: Now *that* makes me feel better... » Racer, posted by NikkiT2 on May 4, 2004, at 9:07:06
It's just when I have all that time before hand...
Actually, though, I've been cancelling a few days ahead, so at least they have warning. And I do have a legitimate reason for cancelling a few of them: those liver troubles. I even made it really clear when I cancelled the last one: "I'm having some tests done because of some possible problems with my liver, and I know that these drugs are metabolized in the liver. Since I don't want to complicate the testing by adding drugs that affect the liver, should I come to that appointment or cancel?" The nurse said that she didn't expect the doctor to be in anyway, so it was no big deal.
It was only later that I found out it was a big deal.
Gee, do I feel the trust necessary to work with these people?
Posted by NikkiT2 on May 4, 2004, at 11:58:21
In reply to I think I could make it first thing in the morning » NikkiT2, posted by Racer on May 4, 2004, at 11:31:22
Remember that trust can take time.. I don't trust easily what so ever, and it always takes time for me.. But many people gain it from me eventually. Maybe this doc can earn your trust eventually??
Please, tell him that the reason for your appointment problems comes down to trust.. explain about the last apppointment too.. and then he can work on winning you over.. at the moment he might just see you as someone who is unwilling to help themselves in anyway and that is NOT true at all.
let us know how everyhting goes OK??
I told Scott I thought he rocked.. so I'm gonna tell you that I think you are remarkable.. You have stood up to SO much and you're still hanging in there.. I know you feel like you're in a hurricane at the moment, but remember that alot of us here think you're too damned good to lose.
Nikki xx
This is the end of the thread.
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