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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 11 of 11. This is the beginning of the thread.
Posted by Racer on May 7, 2004, at 19:30:14
I know. It doesn't have to be this bad, and there is help out there, and all that. But damn it to hell, I don't have access to it.
I won't go into the latest. I made it to my appointment. I have a new drug. I have no confidence whatsoever in the doctor. I am afraid that it's just not worth it.
My husband promised to look into alternatives for me on Monday, because I just don't have it in me to try myself.
Posted by shar on May 7, 2004, at 20:15:25
In reply to Im ready to give up, posted by Racer on May 7, 2004, at 19:30:14
Racer--we all want a new drug [one that works]. Hang on or else! What is your new drug?
Reminded me of this song....
xoxo
SharI WANT A NEW DRUG
I want a new drug
One that won’t make me sick
One that won’t make me crash my car
Or make me feel three feet thickI want a new drug
One that won’t hurt my head
One that won’t make my mouth too dry
Or make my eyes too redOne that won’t make me nervous
Wondering what to do
One that makes me feel like I feel when I’m with you
When I’m alone with you [ok, I don't know about this part...Shar]I want a new drug
One that won’t spill
One that don’t cost too much
Or come in a pill [??? Shar]I want a new drug
One that won’t go away
One that won’t keep me up all night
One that won’t make me sleep all dayOne that won’t make me nervous
Wondering what to do
One that makes me feel like I feel when I’m with you
When I’m alone with you
I’m alone with you baby [well........Shar]I want a new drug
One that does what it should
One that won’t make me feel too bad
One that won’t make me feel too good [too good? what is that? Shar]I want a new drug
One with no doubt
One that won’t make me talk too much
Or make my face break outOne that won’t make me nervous
Wondering what to do
One that makes me feel like I feel when I’m with you
When I’m alone with you [see above, Shar]
Top 10: Huey Lewis & The News Lyrics
> I know. It doesn't have to be this bad, and there is help out there, and all that. But damn it to hell, I don't have access to it.
>
> I won't go into the latest. I made it to my appointment. I have a new drug. I have no confidence whatsoever in the doctor. I am afraid that it's just not worth it.
>
> My husband promised to look into alternatives for me on Monday, because I just don't have it in me to try myself.
Posted by Racer on May 8, 2004, at 8:27:22
In reply to A new drug » Racer, posted by shar on May 7, 2004, at 20:15:25
He prescribed Remeron. I guess it means that I'll have to restrict my eating to avoid weight gain. I was so upset over all this, especially since he told me that if this doesn't work, he's going to put me on an MAOI -- remember I said I'd rather die than have to do the dietary restrictions? Machts nichts, that's his plan. Sure, he must not have meant it as a threat, but it sure came across that way.
On top of that, remember I mentioned that I kept hearing things second hand? I mentioned that to him -- as in, "I keep hearing things that I assume have to come from you..." -- and he said, "oh, no, they must have read them in your chart." Well, no -- the people who have brought them up have said, "well, Dr EyeCandy has said to me that..." Of course, I can't confront him, and even if I could, that didn't come back to me until after my five whole minutes with him. Sure makes it hard to trust, but then it doesn't matter if I trust him or not -- just take the drugs no matter what they do.
Last night I went to bed at 6PM, just because I couldn't stand to be in the world anymore. I got up at 5:45 this morning, and it's 6:30 now, but I'm going back to bed, because the world isn't any better this morning.
Posted by SLS on May 8, 2004, at 10:20:48
In reply to Blimp inducer » shar, posted by Racer on May 8, 2004, at 8:27:22
> Last night I went to bed at 6PM, just because I couldn't stand to be in the world anymore. I got up at 5:45 this morning, and it's 6:30 now, but I'm going back to bed, because the world isn't any better this morning.
I know.
I guess if you were an optimist, you could say that you were one day closer to being healthy and happy.
Oh gosh. I'm not sure I even believe that for myself right now.
Well, anyway, I just wanted to say hi.
- Scott
Posted by SLS on May 8, 2004, at 10:26:21
In reply to Blimp inducer » shar, posted by Racer on May 8, 2004, at 8:27:22
> He prescribed Remeron. I guess it means that I'll have to restrict my eating to avoid weight gain. I was so upset over all this, especially since he told me that if this doesn't work, he's going to put me on an MAOI -- remember I said I'd rather die than have to do the dietary restrictions? Machts nichts, that's his plan. Sure, he must not have meant it as a threat, but it sure came across that way.
What things would you want to eat that you would be denied by the dietary restrictions? You know, you can lose weight on Parnate.
- Scott
Posted by Racer on May 8, 2004, at 12:10:35
In reply to Re: Blimp inducer, posted by SLS on May 8, 2004, at 10:26:21
Well, what would I want to eat? Pepperoni pizza is the first thing to come to mind, with a couple of glasses of red wine. Sour cream in almost everything -- a staple of hungarian cooking -- and liverwurst, hard cheeses, a couple of beers with friends. You know, most of the things that are listed as Do Not Eat.
The bigger issue, though, is the lack of support. The doctor doesn't even seem to care what's going on with me. I get my five minutes per month, and if something goes wrong in between -- well, best of luck, duckie, and it's only because she's hypervigilant anyway. He doesn't even try to listen.
Yes, I'm really and truly spooked out of my skin by drugs and doctors at this point. But I still feel as though a little bit of hand holding through the starting process would be enough to make it work, you know? Instead, what happens? How am I supposed to tell him if Remeron doesn't work? I'm somehow supposed to get past my fears enough to say that it's not working -- if it doesn't -- when he's already stated that he's just going to make it worse? Somehow, that isn't exactly reassuring.
And I think the dietary restrictions are more of a psychological block, both because I feel as if everyone involved is telling me to give up more and more and more of my life without anything to replace it with, and because food is about the only comfort I have in my life. It's like, "OK, we've made you give up everything else, so now give up that one last thing, and maybe then we'll make life bearable for you." So, the restrictions themselves are probably less of an issue than the psychological baggage and the lack of support. (I'm 5'9", and I weight 113#. I already restrict my eating. It wouldn't be that different, you know? It's just that the special treats I give myself -- like pepperoni pizza -- wouldn't be allowed anymore. No special treats anymore would be hard to take.)
Thanks for speaking up, though. I know you're in a similar boat, and so I know you do havea good idea how it feels.
Posted by SLS on May 8, 2004, at 12:46:11
In reply to Re: Blimp inducer » SLS, posted by Racer on May 8, 2004, at 12:10:35
I understand that you are in a foul mood today.
:-)
That's ok. Let me piss you off some more:
> Pepperoni pizza
Pizza, you can eat. Pepperoni, no. Most other toppings, yes.
> with a couple of glasses of red wine.
What about white or Zinfandel? I think most red wines are OK, but I'd want to double-check that for you. I think chianti is now considered OK.
> Sour cream
You can eat as much as you would like.
> and liverwurst
> Probably restricted. Fresh beef liver is OK. Chicken liver is not.
> hard cheeses
Which ones?
> a couple of beers with friends.
Bottled beer from the major brands are OK. Draft beers and microbreweries are discouraged.
What else?
- Scott
Posted by Racer on May 8, 2004, at 13:00:40
In reply to Re: Blimp inducer » Racer, posted by SLS on May 8, 2004, at 12:46:11
How about it doesn't matter if it wouldn't be that much more limited than what I eat now. How about it feels as if I'm giving up too much of the little left to me? How about it feels as if taking away one more thing would be the end of the world? How about if they were prescribed, I would use them to kill myself, because it would be the end of the world? Isn't that enough? I can't see giving up one more thing -- too much has been taken from me already. I would rather die than give up more.
I now, you're hoping to help, and I really and truly do appreciate the information and your generousity in offering you knowledge. I know it sounds as if I'm slapping you for offering anything to me. It's even probably what I'm doing, but I really and truly do not mean to do it to you. I like you, a lot, and I am so grateful that you post to me that I'd never want to slap at you and make you regret having bothered. I'm like an injured animal right now, though: in pain, in fear, and lashing out all around. I'm really sorry that you're getting to feel the claws, and if I ever feel better I'll probably come purring around you to make it up to you. (Cats are notorious for never apologizing, though.)
I'm trying to hold on to the idea that my husband will start a new job soon, that new job will come with medical insurance, and if all goes well they'll cover me, as well. In that case, maybe I can get a doctor who actually listens to his patients? They must exist, right?
Posted by SLS on May 8, 2004, at 14:10:49
In reply to Not what else... » SLS, posted by Racer on May 8, 2004, at 13:00:40
Dear Racer,
You are in such a bad place right now. I wish I could somehow make things better for you. It frustrates me that I can't. I am very, very glad that you responded to my post the way you did. It gave me a better appreciation for what you are going through right now.
What do you need from people right now in order to help you get through this difficult time?
For now, the only things I can think of to offer you is friendship, respect, warm feelings, and a listening ear.
- Scott
Posted by Racer on May 8, 2004, at 14:48:06
In reply to Re: Not what else..., posted by SLS on May 8, 2004, at 14:10:49
>
> What do you need from people right now in order to help you get through this difficult time?
>You know, apparently I want too much -- but I really think that feeling as if anyone on my "service team" actually listened to me would help. Having my hand held through the adjustment period with drugs. Feeling as if the doctor gave a damn about helping me. Seeing consistency between their saying -- ad nauseum -- that they care and their actions that show they don't, that they're so overwhelmed that I just slip through the cracks. Mostly, though, listening and being heard and having support.
Here's one for you: if I have a problem with meds between visits, I have no place to turn. Nope, the doctor won't talk to me, even over the telephone. What gets back to me via the clerk doesn't usually have a whole lot in common with what I'm calling about, so that kinda destroys my trust. And here's the kicker: I have a hard time speaking up for myself anyway, so they have an easy time making me believe that I'm at fault. You know, "Oh, well, you're so hypervigilant about side effects..." "Who me? No, I never said that to anyone, they must have misunderstood something in your chart..." (that last is the doctor, when I tried to bring this up to him.)
And because they're all part of the same agency, I really feel unsupported all the way around, as if I have no one I can turn to for help. Any time I try to tell someone there how I'm feeling, they tell me again how much they care and how much they're doing for me and how it's my fault I'm not responding. Whew... Aren't you sorry now you asked? Want more? I got more, trust me...
So, in general, being listened to would be a good first step...
> For now, the only things I can think of to offer you is friendship, respect, warm feelings, and a listening ear.
>
>
> - ScottScott,
You are doing more than you probably can see. Writing that did help get some of it out of my system. Seeing that it's really the patient centered part of care that's missing helped -- I mean, they keep saying that I'm asking too much, but maybe they're just offering too little? Or offering only one side of the treatment they're supposed to be providing? Just the fact that you heard me helps. Just the fact that you post to me helps. Just the fact that I think you probably understand this all the way into your bones helps.
So, you help.
Damn, if it's that easy, why can't anyone at this agency do it?
Posted by shar on May 8, 2004, at 21:35:18
In reply to Im ready to give up, posted by Racer on May 7, 2004, at 19:30:14
Please don't give up! This time may suck, and I hate it that it is so bad for you, but I know for SURE I want you to be around for a while. For at least as long as I am, that's for sure!!
Could be the 'misery loves company' part of my brain (envision a pie chart...), but I know I want you here, in the physical world.
AND, I think, eating a LOT more of what you are allowed! You weigh less than me and are almost a foot taller! That just can't be good. So, for whatever IS on your 'ok to eat' list, please take advantage of it!
K?
xoxo
Shar
This is the end of the thread.
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Dr. Bob is Robert Hsiung, MD,
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