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Old 10-22-2009, 02:45 PM   #241
JustAKid
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Originally Posted by bumbershoot View Post
Just read this...it amused me...

Might not be a surprise that when someone in my household is going to take a drug, I research it. OK, that means western medicine drugs...I often do NOT want to research homeopathic remedies b/c they come from really really disgusting things (though there's no "findable" amount of the thing in it by the time it's prepared)....but anyway, from the age of 18 when I read the package insert of an eye dilation drug in the waiting area of the optometrist's office (he was angry with me for asking about it, and sent me out there, where I, you know, read it out loud to people along with the risks of cardiac involvement in the drops...he made a mistake...BIG mistake) through now, I read inserts, I go to drugs.com, I look into it.

So the article on MSN today about how drug labels are made by the maker, not the FDA, and how they hedge the truth and hide unpleasantness as much as possible, didn't surprise me. But for some reason, this did:



So users *still* fit into the definition of insomnia, eh?

I remember hearing this GREAT skit by Steve Martin, where he's describing this amazing drug, it does all these crazy things (note: he's talking about an illegal drug, so the effects aren't things like "gets rid of stuffiness" etc)...then he goes to read the name....plaaaaaa ceeeeee booooooo.....

Heard that skit in chiropractic college, loved it then, love it now! Placebo effect is possibly the most powerful and *wonderful* effect there is, IMO! All the positives, absolutely no side effects. What's not to love????
I'm going off topic with you for a second...

You know, having read some of your posts and your dealings with E and so forth, it does not surprise me that you look into your "western medicine" medications at all. What DOES surprise me, though, it that you read something and accept it as fact (re: MSN article, not the doctor visit).

See, the thing with me is that I don't question, and I don't think long term (well, in terms of most things. DL planning is a whole nother ball game!! ). My doctor tells me to take this medicine, I do. I know this about myself and I accept whatever consequences come from those decisions. You, on the other hand, seem to question - investigate. That image I have of you in my mind lead me to think that you would understand that every thing that is written has an angle, an opinion, a point. The point of this article was that, quoting you as I didn't read the article myself, "... drug labels are made by the maker, not the FDA...they hedge the truth and hide unpleasantness as much as possible..." I'm sure if I wanted to, I could find much evidence to not only prove this point further, but also DISPROVE it. I find that the truth ALWAYS lies somewhere in the middle, that any person saying anything will sway it one way or another.

So, me being the nosy rosy that I am, I'm wondering what your philosophy about western medicine is? Do you find it to be unhealthy and that's why you don't like it? Do you agree with what the article was saying, that medicine makers try to fool the general public? Do you use homeopathic medicines more? Why?

Please know that I am not attacking you, saying your way of thinking is wrong, or any other such unpleasantry. I'm merely stating that I was surprised, and thinking perhaps I can learn something from you; that you might teach me something that isn't Disney related.
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Old 10-22-2009, 05:49 PM   #242
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health "care" vent, ignore if you wish!

I'm having a pretty serious personality conflict with the ND we hired for E. And the conflict is...I enjoy logical discussions of things, and she enjoys the party line. She also doesn't listen. Which is a pretty big problem for me.

I'm working on going back to my mindset over a week ago, when I was tremendously concerned about E. But his lymph nodes have gone down by half in under a week, he doesn't hurt anywhere, his nose is almost clear, and his lips are gorgeous and not clowny anymore, so when she talks about "his symptoms", she's going on week old information. And the lab results are a week old.

By the way Tracey, turns out E has strep...so...I'm sorry, and...watch for it? Though honestly I don't think that's what he's had this whole time. I think it was a "omg I'm so tired of fighting things off, oh hey, there's strep on this chair that I just touched with my hand then licked something off my hand, mmm, streppy goodness, party party" type of secondary infection, I don't think he had it when we saw you...

Note to self: trip insurance in the future. So I can cancel if we're as sick as we got, even though we were feeling better by the time we went.


So anyway, I understand their reasoning for antibiotics with strep. I've taken the classes, I get it. What I don't get is the reasoning that they are soooo concerned about him. And not concerned about me. Logically I would think they would want me to make an appt. However, they don't. And they are only concerned about people 5-25. Which causes my brain to say...what about the body changes that we are sooooo worried during THOSE ages about strep going bodywide and cozying up to the heart, but as soon as you have your 26th birthday, nope, no concern? What changes? Why is this? HOW does this make sense?

The conversation where I was saying "if penicillin is the most effective one, let's use that, because there's NO allergy to it in ANY family members" and she kept responding with nonsequiters could have been used in a Candid Camera skit, it was so circular and ridiculous. It's like she had earplugs in and just kept saying versions of the same thing which had NOTHING to do with what I was saying.

Seriously, if I wanted this sort of thing...I'd have just gone to the MultiCare Urgent Care. What's the point, seriously....


AND...every pharmacy in the area takes what the companies send them. And they are sent in one of two forms. Capsules made of gelatin, or powdered drug+artificial flavors (and colors, I believe he said). Nope, neither of those is acceptable!

So we get to pay out of pocket, no reimbursement possible (but I will be following up, oh yes I will), because we have to use a true compounding pharmacy to have it put into a cellulose capsule. For my 5 year old to take. Let's see...are 5 year olds known for their vast abilities to swallow pills??? Guess he gets to be extraordinary in that! (he can swallow pills, he's done it...I'm not concerned, but 4 times a day for 10 days is a LOT of pills)

And when I called the ND to have her fax the prescription to this compounding pharmacy, and explained why...it was news to her, that he couldn't have these things....oh gosh, I guess the 5-10 minutes where I described his diet and things he has to avoid was useless then? Once again, if I wanted people to ignore what I was saying so that their own agendas could be followed without all that pesky "what the patient is telling me" business, I would have seen an MD.

Gauuuuugh.

And so my utter inability to choose GOOD providers continues. The one exception is E's dentist. And...maybe my own dentist (though Robert hates the dude, and I'm starting to have some questions about him).


I'm exhausted.
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Old 10-22-2009, 06:19 PM   #243
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Oh hi JustAKid, didn't see you there in my rant!


The main part I was reacting to in that article was the very little amount Lunesta helps from clinical trials, vs what people think it does. Especially given the freaky freaky side effects that drug can have, if you're going to take it it should at LEAST help a whole lot more, IMO.

For instance, the cabergoline Robert takes has some icky side effects, but it helps shrink pituitary tumors (the exact reason he's taking it) and the side effects don't involve eating a fridge-ful of food while sleeping, or driving while sleeping, etc. So the negative stuff (horrible sickening headaches for a day, for one) is taken over by the good stuff (shrinks the tumor that has been throwing out symptoms for *at least* 3 years, and MDs, NDs, and acupuncturists have been *ignoring* until we absolutely insisted that his hormone levels be checked).

In the case of E right now, as long as we can find something that is as close to pure drug as we can (hence my unsuccessful request for penicillin (hell, I'd get some moldy bread and give it to him if it worked better!) b/c it's the first, and IMO if you're not allergic, the best), that won't cause other problems, I'm willing to take the good (it should eliminate the strep that his tired body has acquired and has reacted to quite strongly) and deal with the bad (well, I don't know how his body will react to it, but I know how MY body reacts to antibiotics, and it's not pretty, but the bad also includes worries of his not being sensitive to abx, etc).

Now in this particular case, if I'm taking it (meaning me or E), I'm taking it. He will have the entire dose of it, not just until he feels better. If you're taking a drug, do it right, right?



My FIL was, in essence, killed by the MDs and nurses. Their inability to find a proper drug for him, and their inability to keep him taking the antibiotics (nothing feels quite like hearing the nurse swear b/c she didn't know she was supposed to continue the abx when the patient has a raging infection through his body), and then their inability to deal with his violence as they took away the sedation so they could take out the vent caused his death.

My mother died due to a drug she was taking and two different types of medical offices scoffing at her symptoms of a bleeding ulcer. Blood thinners don't mix with such things. I still don't know if anything could have been done for her, but I imagine taking her OFF the drug while she healed up the ulcer could have been something to try, so she didn't die like she died.

MDs at the same hospital that my FIL died in nearly killed me...surgery for no good reason (they kept crying "emergency emergency!" but my records show that it was requested by me, NO indications of the problems they were talking about at all in my records)... and let me go home with a hemoglobin level of 7 and NEVER told me it was that low...I was having a problem once home and the nurses there wouldn't give me the on call guy's office phone number when we couldn't find the *post it note* he'd written it on (not even a card)...

Useless.

My husband was diagnosed with a benign but fast growing tumor in his brain in his 20s. Growing so fast they gave him 6 months. He took some time to look into it, as they wanted radiation; surgery wasn't possible. Radiation directed at that spot caused problems that he felt were worse than death. He refused. They threatened committment. He had to retain a lawyer. He found help in NDs and a now-former MD. He paid out of pocket for two years for things that started shrinking the tumor immediately, and 2 years later (a year before I met him) it was gone. He'd had MRIs, paid out of pocket, throughout. If he'd had the radiation they might have gotten rid of the tumor, but he would likely be blind, with perhaps no sense of smell, and some other mental changes...and of course he owuld have had radiation which isn't benign. Instead...he healed himself, no side effects (except for winding up in the hospital with kidney failure when he went on a month long meat binge after 2 years of macrobiotics).

And of course now, he's accepting western medicine, because it's acceptable for his current problems. But in this case, we take what the endo says into consideration, and decide if we will go that route. In every case except the metformin (which has blown his endo away, that such changes can be made in a diet) what he's wanted has gone along with what Robert is OK with (and me, too, as R asks my opinion). After looking into the drugs for the prolactinoma, I felt that one was better than the more commonly used one, and was going to request it...and the endo had already chosen my preferred one. (the common one has fewer side effects, but if it doesn't work and the patient needs surgery, it does something to the tumor that makes surgery not as effective, bleah!)

And with E, I'll accept this drug, if we can dump the junk they put into it, and as long as the ND can stop getting on my nerves long enough for me to remember how concerned I was and that I knew he had either staph or strep by the time I made the appointment and knew that he'd have antibiotics.


We just need to be in charge. Sometimes our hired help forgets that...


Oh, also, when I was a practicing chiropractor, I always knew that I was the hired help. Sometimes I couldn't or wouldn't do what they wanted me to do, and I always had someone to refer to when I c/souldn't do something. So I practiced what I want others to practice, most definitely!
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Old 10-22-2009, 06:34 PM   #244
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Hi Molly. Poor you and poor E. There is nothing worse than a medical provider that won't listen. I know all about it, you have my sympathy. I am loving your trip report. I haven't been on Disboards for a few days at least and I sat and read 3 pages worth today. I love the fact that you guys are running an hour ahead, you would think you were from a different time zone.
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Old 10-22-2009, 06:38 PM   #245
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continued off topic

I'm now seeking out the FDA review of Lunesta. Already confirmed that the drug insert does have just the info that they were better than the placebo, which hardly means anything.

Realized after replying that you were likely wondering why I trusted the APs quote of what the FDA thing says.... It seemed to be a full quote, not an obvious "they're only putting in half of the words actually used" like they seem to be doing in the first 4 paragraphs of just about any H1N1 article (oy). It seemed easy to check, and since they were talking about the FDA I doubt they'd want to misquote/misparaphrase them.

So that is why I trusted what they said about how little Lunesta actually helps, and that someone had checked out the definition of insomnia to see if the people taking it clinically were helped enough to bring them out of insomnia or not.

Now you got me all curious though....

Hmm, where to find a good definition of insomnia.... Definitions change over time...for instance, I once knew a woman who was a new nurse *just* before Salk and Sabin were doing their thing. In school, she learned a certain set of signs and symptoms that they called polio...shortly after Salk and Sabin came out with their concoctions...the hospital she was working in let them know of the NEW definition...higher fever than before, longer duration than it was before, and you pretty much *had to* have the paralytic version for it to be called polio...interesting way to get your numbers of diagnoses down, ain't it?


Off I go, seeking out that document!
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Old 10-22-2009, 06:41 PM   #246
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Originally Posted by kaoden39 View Post
Hi Molly. Poor you and poor E. There is nothing worse than a medical provider that won't listen. I know all about it, you have my sympathy. I am loving your trip report. I haven't been on Disboards for a few days at least and I sat and read 3 pages worth today. I love the fact that you guys are running an hour ahead, you would think you were from a different time zone.
Thanks!

Yeah, that time thing was weird.



OK I'm officially off the healthcare topic now. Unless Brandy (the nd...oh, since I myself can, by degree, call my self "doctor", I don't call others that unless they're going to say it back...this generally doesn't come up face to face as I do almost anything I can to avoid using their name or title while chatting...very similar to what I do with my MIL...but just in case it weirds someone out that I don't use "doctor", that's why) does something else that bugs me, LOL. Or if I find the FDA document and the AP drastically mis-quoted it, then I'll come back and say "whoopsie!"
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Last edited by bumbershoot; 10-22-2009 at 06:48 PM. Reason: parenthesis
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Old 10-22-2009, 07:12 PM   #247
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Thank you, so much, Molly, for taking the time to go into your medical woes, and your thoughts on health care. It's alway interesting to see how others life experience shapes them as human beings. I can totally see, given your family medical history, why you're a bit....iffy....on the whole thing.

Now that that is explained and out of the way....what about that trip report? Last you left us with a beautiful picture of your wedding day, and the assurance that R is not waiting to be sprung from the DLH dungeon.
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Old 10-22-2009, 07:19 PM   #248
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That was something I forgot to mention. I think your wedding picture is wonderfully romantic.
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Old 10-23-2009, 03:36 PM   #249
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Hey Molly ! Finally catching up after getting back from out trip. If you haven’t seen me do a “catch-up” post before you’ll want to brace yourself – I tend to go really overboard with details/responses. And I don’t expect a detailed response from this. Just know I'm enjoying your TR ;-]

Cool that you got a couple of moments at the beginning and end of the trip to post while at DLR :D Hey, you were above Naples? We walked past your room several time ...hehehe

Yup, you had the standard getting ready to go - pack too late, get up too early scenario. Hehe, love your interview questions for Grayline drivers. I found LAX pretty hassle-free also, easy baggage claim and short walk to DLE bus pickup island (we stayed at Terminal 3). Sorry your driver was in rant mode :-[ And what’s the deal with the plain white bus??? That stinks.

Still funny that both of our busses stopped at the other’s hotel first. Interesting look into the inside of tipping. I am usually a 20% tipper, just my nature. Too bad that the place you worked at factored things so badly. Good that you had ready cash for it though. I remembered to have it ready for once too!

The “welcome home” thing is very cool, it is a bit cheesy but I think it is a cool thing for DVC members. Yeah, the weather was weird, but the kids still swam several days ;D Too bad they couldn’t get you into your room early – we were shocked when they said our room was ready, it wasn’t even noon yet.

Great pic of E at lunch, good pirate face. Nice that they didn’t charge for the water at WWS. Weird that they stamped your hands when you entered DCA, we got stamps as we left but never as we entered. Ohhh, interesting about the capacity thing – guess I can see the logic in that.

I still have to do the token grumble that they didn’t build a FP lane when they put together TSMM, but it is a LOT of fun. Awww, poor E cut his mouth. Glad it wasn’t too serious and the bleeding stopped quickly. I hear ya about not feeling well. I skipped several rides during our trip for fear of tweaking my neck or just feeling woozy.

Blah blah, shop – lol. Yay that your room was ready for you though. Cool that you got a quick meet with Tracey before hitting Grizzly. And you may have worn a poncho, but you’re one up on me – I didn’t ride it at all ;-]

Great lamp pics! Really too bad that your neighbors smoked, what a bummer. Nice room though, looked very comfy. How convoluted for you to get in/out of the hotel. Next time pack one of those emergency rope ladders and just climb up and down – lol

Great gift from E and so cool that he knew exactly what he wanted to get you. Nice score getting seated so quickly at the PCH Grill. Nice slow-mo fall by E, he really keeps you jumping sometimes, doesn’t he? And I agree about the early morning flight/long day first day. For us it didn’t set a good carefree tone and by the end of that first day we were just cranky zombies :P

Cool that you were able to coordinate with Tracey for the fireworks – it is such a cool show. We had a tree in the way of the projection ball too, but still lots to see. Very long day indeed. I had the same issue for the wakeup call – not easy to get Bean or Kyra awake enough to answer the phone - lol

ROFL! Nice “face” when you realized what time it really was for your magic morning and that you were early. I don’t know why they sprint in that situation, but so many people want to be “first”.

Nice that Robert got to ride SMGG before it got too crowded, and yay for Peter Pan’s Flight – love that ride. Good self control in not going off on the Bjorn users – not much you or they could do about it in a windy ride line. Sounds like a nice tour of rides through Fantasyland. Yay for the T-shirt transfers working out – looked great on E! Great idea with the canvas bag to match it – hadn’t thought of that.

Nice that you were right up front for the Frontierland rope drop. We dawdled a bit too much in Fantasyland and missed it, heading in to the Frontierland/Adventureland area with the teeming masses. Yay for getting to HM and that E enjoyed it. And great that you got a random DISer encounter while the guys rode BTMRR and then another right after – Whoohoo!

Ewww, sorry Minnie’s was so bad, what a mess. Looked like some great character interactions with E though. What a loser jumping the rope to steal breakfast. Glad they caught him. How fun that the guys did the canoes. Poor widdle stuffed animal – Bean would have been enraged or started crying had she seen that.

Nice being able to walk right up with your FPs on Splash. I sat up front too and am not a small guy, but I’ve learned that you just have to choose a direction and lean – I leaned left and Bean (right behind me) leaned right. Unfortunately Kris didn’t hear us so he stayed straight and I blocked half of him. Funny that you didn’t realize the train went right through Splash.

Nice shot of E with Brer Bear. And at least you got to see Jack and Sally – we were looking and never saw them the whole trip. Should have asked somebody. Their costumes were kind of lame from the pics I saw, and what was up with his “alien” shaped face?

Yay for Disney being good for Robert’s blood sugar! Good call heading back to the room for a rest. We tried for that but didn’t get as much rest as we should have.

You’re really doing that park hopping with FPing Soarin’ and Grizzly, then heading back to DL. I didn’t have enough family support to do Fantasmic, so we didn’t do it at all. Some regret there, but not as much now since I’ve read your thoughts on it. What a quirky Jungle Cruise experience – lol. No turndown service aye? We never got it as we kept the Privacy Please placard up and just got fresh towels and tp from the maids. I’m paranoid about all of the computer and camera equipment that we leave in there and would rather not have the traffic.

Oh yes, and Eddie Izzard rocks!

Interesting method with the bedding baskets at GC. Too bad breakfast wasn’t better and that E started reacting to the milk, but at least you got some food in ya to keep you moving. And BIG YAY for Robert getting you your B-Day button! Uh oh, hubby in room with no key and the wrong last name, oops!

Great wedding photo, even if you are a bit out of focus. But you are right …there were a lot of good looking families there. I think it had to do with the Arizona thing – lots of Arizona families there, and I remember seeing a lot of “beautiful people” in AZ. Great story from you wedding – love that you did your recessional to the IJ theme :-D

How funny about him having security called on him, but he handled it very well and it sounded like the Disney security people were very professional (I soooo want one of their badges).

Nice aside about drug facts and labels, just hearing the disclaimers they have for some of this stuff is staggering. And I remember that Steve Martin skit. He was such a brilliant/wacky comedian, I wish he still did stand up.

Sorry about E getting strep, but sounds like he is doing better otherwise. I can’t stand it when a medical professional won’t listen. You want to grab them by the shoulders and just shake them sometimes. I understand the need to rant – I know so many people who have had bad experiences with the medical establishment. You really need to do your own research and keep your own counsel to make it through some of this stuff. We are lucky in having a good NP for the girls, which has made all the difference for us. My doctor is okay and at least listens. Roxy still hasn’t found one that she likes. Ah well.

Looking forward to your further Disney adventures!!!
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Old 10-23-2009, 05:03 PM   #250
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Old 10-23-2009, 06:15 PM   #251
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Holy Cow - Mustard Man! Do you know how to post!
It was rather impressive wasn't it?
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Old 10-23-2009, 08:38 PM   #252
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It was rather impressive wasn't it?
What I find most impressive is that he remembered all those details!

I mean, I read the report posts, then the comments, so I forget half of the report post by the time I'm to the next one.

Kudos for mnmrmustard!
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Old 10-23-2009, 08:41 PM   #253
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What I find most impressive is that he remembered all those details!

I mean, I read the report posts, then the comments, so I forget half of the report post by the time I'm to the next one.

Kudos for mnmrmustard!
I was thinking the same thing. I actually got post envy.
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Old 10-25-2009, 06:58 PM   #254
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Holy Cow - Mustard Man! Do you know how to post!
LOL, thank you Shannon. I tend to fall behind and then do these massive catch-ups

Quote:
Originally Posted by kaoden39 View Post
It was rather impressive wasn't it?
Hehe, thank you thank you

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Originally Posted by JustAKid View Post
What I find most impressive is that he remembered all those details!

I mean, I read the report posts, then the comments, so I forget half of the report post by the time I'm to the next one.

Kudos for mnmrmustard!
Well I kinda cheat. I mostly do my catch-ups with a two monitor scenario. I open up a new e-mail and do a running commentary as I read and then post the whole thing when I've finished catching up

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I was thinking the same thing. I actually got post envy.
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Old 10-26-2009, 01:29 PM   #255
JustAKid
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Ooooooh Mooooooolly, where arrrrrrrrrrrre youuuuuuuu?
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