That is one of the oddest things with RLS, it's so hard to explain, but when someone else explains it, I'm always like, yes - that's exactly what it feels like. That's the only way I know if someone else has RLS - only those who have it know exactly what it feels like.
Printing information and giving it to my dr. really helped me, we basically learned about it together. You'll get there but it's your body so you need to inform the dr. not them inform you. I definitely know more about my body than my dr. does, unfortunately though, I need her to write the prescription!
Shelley
Docs always say everything is normal
I survived
Well, my thanks to Horsehead and View for the support and the hugs.
I SURVIVED THE APPT., of course it's never an easy task.
I speak all the time about making sure that your doc is on your side. You can talk easily with them. Go in with a plan. Know your facts. I did most of that as it turned out.
I still don't like that the asst. does a long extensive interview, makes me feel like he doesn't have the time to do it himself. She is a nice lady and I speak easily with her, but some of this stuff is personal. *note, my doc has a dr's degree in Psychology as well. Totally smart, but lacks some social skills.....I don't mean that in a bad way mind you. Just not chummy, warm and fuzzy, get to know you, kind of guy. Sorry had to be said.
"So I hear your having a rough time?" "'yeah, reads like a sick book!"
I first had to make it clear that I did beautifully up until Feb...There were even days that I did not take any Percodan, but kept the Ambien. Yes, I still use 1 mg. of Ativan 5 out of 7 days a week. So, this was important for him to know. I could and have managed the RLS for the most part.
So I start with Feb., tell him some of whats happening. Then hubby's open heart thingy next week. Told him I think that this year we might need to order a sleep study, nope never had one. But feel that it's possible that I am out of control with PMLD. Hubby say's attacking a man at night with a heart condition is not right. LOL
Here's the goofy part. He like's to advise and I listen, and I usually have an opinion. But that upsets his process. The games begin. "I think we should try you on Clonazepam (sp?). Have we ever tried this?" We had and it did nothing for my RLS, just drugged me the next day. "It has a longer life and I think your going to need it the next couple of weeks." NOPE. "I can't really afford to be drugged for no reason the next several weeks. I understand why you'd like for me to try it, but I will be driving much more than I would in any given year, in the next two weeks and I don't trust that I could do this easily, drugged that way." *the hospital is in downtown Dallas and I live 35-40 minutes away in good traffic.*
"Ok, well then your fine with what we are doing now!"
"No, but I'm hanging on by my fingertips. I can't expect to be 100% symptom free, but I can still manage with some help. I'm going to be the #1 caregiver, driving tons, at all hours and I will need rest. I'd love to be numb the next week or so, but that is not possible or right to do."
Tell me why this has to be a game? uuuufffffaaaa Did I read that wrong?
It came down to this. Upped meds...............
I was honest and told him that I couldn't take them the way he wanted. I want to walk, but still don't want that messed up feeling. I just want the ability to function.
So, trying it out today and it's messed up already.
I took the 1/2 percodan this morning, maybe an hour ago. I'm am loopy now. So that plan sucks. Maybe 1/4 in the mid morning, no more half.
Maybe none til afternoon, who knows I've got a few days to play with it.
1/4 to 1/2 in the evening (regular dose), adding 1/4 to 1/2 at bedtime. Also, he wants to up the AMbien to 15 or 20 mg....I personally, don't think I wish to do this. That's alot for me. Tried the 10 mg last night + the 1/2 percodan and did not wake up. So for now sleep is protected I think.
View, I know and you know, you word things wonderfully. There are just days that we take turns. I almost deleted that post and just thought .....Nope, own it.
It's terrible to feel like you so need a doctor that you are willing to put up with less than personal service. I feel like I'm a drug ho some days, not someone with an honest disorder. I know theres tons of us that feel this way. I'm determined to stick with this doc.. I found him with me own research, reading medical journals for two years while awake at night. He's one of the best, but I think that many "specialist" lack personal skills that could make them over the top wonderful doctors. It's just my opinion.
I'm hoping this finds you all well today.
I'm hanging in there. No other choice.
Thanks for all the love and expect it all right back to everyone.
I SURVIVED THE APPT., of course it's never an easy task.
I speak all the time about making sure that your doc is on your side. You can talk easily with them. Go in with a plan. Know your facts. I did most of that as it turned out.
I still don't like that the asst. does a long extensive interview, makes me feel like he doesn't have the time to do it himself. She is a nice lady and I speak easily with her, but some of this stuff is personal. *note, my doc has a dr's degree in Psychology as well. Totally smart, but lacks some social skills.....I don't mean that in a bad way mind you. Just not chummy, warm and fuzzy, get to know you, kind of guy. Sorry had to be said.
"So I hear your having a rough time?" "'yeah, reads like a sick book!"
I first had to make it clear that I did beautifully up until Feb...There were even days that I did not take any Percodan, but kept the Ambien. Yes, I still use 1 mg. of Ativan 5 out of 7 days a week. So, this was important for him to know. I could and have managed the RLS for the most part.
So I start with Feb., tell him some of whats happening. Then hubby's open heart thingy next week. Told him I think that this year we might need to order a sleep study, nope never had one. But feel that it's possible that I am out of control with PMLD. Hubby say's attacking a man at night with a heart condition is not right. LOL
Here's the goofy part. He like's to advise and I listen, and I usually have an opinion. But that upsets his process. The games begin. "I think we should try you on Clonazepam (sp?). Have we ever tried this?" We had and it did nothing for my RLS, just drugged me the next day. "It has a longer life and I think your going to need it the next couple of weeks." NOPE. "I can't really afford to be drugged for no reason the next several weeks. I understand why you'd like for me to try it, but I will be driving much more than I would in any given year, in the next two weeks and I don't trust that I could do this easily, drugged that way." *the hospital is in downtown Dallas and I live 35-40 minutes away in good traffic.*
"Ok, well then your fine with what we are doing now!"
"No, but I'm hanging on by my fingertips. I can't expect to be 100% symptom free, but I can still manage with some help. I'm going to be the #1 caregiver, driving tons, at all hours and I will need rest. I'd love to be numb the next week or so, but that is not possible or right to do."
Tell me why this has to be a game? uuuufffffaaaa Did I read that wrong?
It came down to this. Upped meds...............
I was honest and told him that I couldn't take them the way he wanted. I want to walk, but still don't want that messed up feeling. I just want the ability to function.
So, trying it out today and it's messed up already.
I took the 1/2 percodan this morning, maybe an hour ago. I'm am loopy now. So that plan sucks. Maybe 1/4 in the mid morning, no more half.
Maybe none til afternoon, who knows I've got a few days to play with it.
1/4 to 1/2 in the evening (regular dose), adding 1/4 to 1/2 at bedtime. Also, he wants to up the AMbien to 15 or 20 mg....I personally, don't think I wish to do this. That's alot for me. Tried the 10 mg last night + the 1/2 percodan and did not wake up. So for now sleep is protected I think.
View, I know and you know, you word things wonderfully. There are just days that we take turns. I almost deleted that post and just thought .....Nope, own it.
It's terrible to feel like you so need a doctor that you are willing to put up with less than personal service. I feel like I'm a drug ho some days, not someone with an honest disorder. I know theres tons of us that feel this way. I'm determined to stick with this doc.. I found him with me own research, reading medical journals for two years while awake at night. He's one of the best, but I think that many "specialist" lack personal skills that could make them over the top wonderful doctors. It's just my opinion.
I'm hoping this finds you all well today.
I'm hanging in there. No other choice.
Thanks for all the love and expect it all right back to everyone.
-
Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
(((((penguin))))))))
Penguin you do rock. Thank you for the love. You know I do the same for you anytime. It's just life I guess. And I have been cutting my losses all day......priorities you know!
Thanks for the love.
Thanks for the love.