ANA Discussion Forum
General Category => AN Issues => Topic started by: Lorenzo on June 18, 2008, 01:09:52 pm
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Hi all,
Ok, apologies if I'm doubling up, I may even have posted about this before, but frankly I can't remember. Simple question: I have now high blood pressure (alarmingly so), and must have had it for at least three years or so. Doc prescribed first type of meds in increasing order of strength, but I might as well be swallowing pure (organic of course) bread flour for all the effect this stuff has. Needless to say, I now wonder if any of you have come across, in your wide an learned readings, any reference about correlations between ANs and high blood pressure. As my GP wouldn't know anything about ANs, or not much, and sadly any An specialists in thsi country seem to have left me to one side, I need info from your side of the world.
Any info you guy may have would be really appreciated. Living with an average of 160+/90++ BP is no fun, even just on a worry level!
Ciao a tutti e grazie
Lorenzo
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Ciao, Lorenzo-
I don't know much about blood pressure - but isn't red wine supposed to help?? ;)
Seriously, I'll be interested to see if anyone has seen a correlation between ANs and blood pressure.
Debbi - grazie mille
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Hi Debbi,
Red wine works! I can testify to that!! Never measure BP post wine or any alcohol, pointless. Serious changes in readings! BTW, decongestants, same thing, lowering blood pressure, but to dangerous levels! I nearly sent myself to hospital the last time I had a cold!!
:) I think I'll have a glass of Sangiovese.
Ciao, Lorenzo
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I think I read a post by lori67 earlier today about blood pressure and ANs.
Lori, where are you ???
Jan
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Which Lori are you talking to, this one or that one? :D I get confuse with all the names stuff...
Ok, if anyone finds it, let me know, I'd be interested. In the meantime if I hear back from my docs at Stanford, I will let you know what they say.
Ciao, Lorenzo / Lori
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Lorenzo/Lori -
Just plain Lori here. I had been treated for very high blood pressure for a few years prior to my AN being discovered. I also had an irregular heart rate. My resting blood pressure was usually about what yours is - 140/90, occasionally even higher. My resting heart rate was 110. Needless to say, exercising was a real challenge, because I was already out of breath before I started doing anything. I had EKG's, Echocardiograms, 24 hour Holter monitors, you name it - no one could figure out why I had these problems, so they just put me on meds to treat them.
When I had my MRI and found out there was a golf ball stuck in my brain stem, we started to wonder if that had anything to do with my problems. After they took the AN out and my brain stem returned to it's normal position, the blood pressure went back to normal, almost a little low and my heart has slowed down to a normal level. As I mentioned in another post, I still take the meds to regulate my heart rate because it's a low dose with no side effects and I'm afraid of going back to what it was before. Besides, my family has a history of wacky heart things anyway, so I don't know if that was an AN related thing or not.
So, I'm not sure a doctor would say the two are related, but I think they are. They also say they are not genetic (except NF2), but my Dad and I both had AN's so, I'm beginning to think the docs don't actually have all the answers yet.
Hope I didn't confuse you. I think I need a glass of wine - which, by the way, is good for your cholesterol levels too!
Lori
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Lorenzo:
I had slightly elevated BP prior to my diagnosis but not high enough to warrant medication for it. I was also about 30 pounds overweight. Prior to my AN diagnosis, my sensation of taste went south and I began eating much less - and lost over 30 pounds within about 6 months. Following my diagnosis and subsequent surgery, my BP (in the hospital) was perfectly normal and my pulse rate was also excellent (between 65 - 70). I checked my BP a few weeks ago (at a drugstore monitor) and it was 178/78. Not perfect but quite reasonable for a fellow my age. I haven't gained back the extra weight I was carrying so I've always attributed the improved BP to that, but of course it could be the fact that I had a large AN pressing on my brainstem that elevated my BP, pre-diagnosis....or both Frankly, I don't care all that much as long as my BP remains stable and relatively normal. Interesting question, though. Thanks for asking it.
Jim
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Lori (The one) & Jim, :) thanks for all that!
I'm not sure how long I have HBP. Discovered it in November when I was at Stanford, they though I had White Coat Syndrome. Ya, right I thought so too, there's a first time for everything. But, thinking back, I think I have it for longer. Sadly here, there's no investigation as to why i have HBP, but instead they just give me meds. For a person that never took meds, at all except for the occasional tylenol, this is a big deal.
Mine sky rocketed to 180/105 at it's worse, then the next day it could be back down to 138/80. No rhyme nor reason. Meds made it level, at a higher rate. I'm only 48 (no comments please) and there's no history of blood pressure problems in the family. I could loose a few kilos alright, like about 10kg, and have started cutting back on fats and taking more walks too.
In the end, I agree, as long as the pressure stays at a reasonable level, that's fine. I'm jsut trying to understand why it is not normal, and if there's anything else I can do other than the usual modalities that don't seem to have much effect so far. If it something to do with the AN, then there might be little one can do.
I dunno.
Anyway, it's not a crisis, just a point of interest and something I would liek to solve one way or another.
Thanks again.
Ciao, Lorenzo
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Hi again-
You mention white coat syndrome, which for some is very real. My hubby was medicated for HBP for years - only to find out that what he is is white coat syndrome!
He recently wore a blood pressure monitor for 24 hours (orderd by his cardiologis) to see what happens during a "nornal" day - although there were quite a few spikes, the doc decided that my hubby didn't need to medicate.
So, that's all along way of saying -- have a glass of sangiovese and call your cardiologist and see if you can/should be monitored for 24 hours. Of course, everyone will tell you (and they are correct) that losing a few kilos/pounds can knock points off your BP also. I was borderline a few years ago, lost 15 -20 pounds and - voila - excellent BP now. And, of course, red wine and dark chocolate! (If it's good for cholestrol, I figure it must be good for BP too!) BTW, my very favorite dark chocolate is an Italian brand called Venchi, and it is specifically the Ripiene one (dark chocolate filled with dark chocolate granache). I special order it ... sad, but true.
Ciao!
Debbi
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Debbi,
I have a couple of friends that have White oat syndrome, and very real it is too! However, I don't usually go mad when in the presence of a doctor. Ok, last visit to Stanford was different, it was my 3 year check-up. But still... anyway, I have a monitor here and check my BP every day, twice a day. So, I ahve it consistently, not jsut spikes. I shuld get the doc to have this investigated more.
But, more importantly, I know about wine being good for bp and cholesterol, but chocolate too?? Oh heaven! Angels be praised! Grazie, grazie, grazie! Now i can feel less guilty about having my preferred 70% cocoa with almonds from Lindt or Greens and in fact feel good about it! How about that. The other one I have from time to time is the 99% coca, on special occasions only. It requires concentration that one.
Fortunately I can get my choice brand up the road in our local gourmet store! Bliss!
Ciao di nuovo, Lorenzo
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hello Lorenzo,
I had never had high blood pressure until after surgery. I am taking meds for it. I do have a blood pressure machine and I use it every so often when I feel there is something weird acting up inside me. I sometimes wake up with blood pressure up.
My husband is one that he was told he had White Coat Syndrome before he had heart surgery.
eve
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I always had fairly low blood pressure and now mine is higher than it should be. I never thought it had anything to do with my AN being removed I just thought it was because I am getting older....I think now I will say it is higher because I had a brain tumor....
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Lorenzo
Interesting topic and timely for me. On my last visit to the Internist a little over a week ago, my Blood Pressure was 160/110. He kept taking it and that was the best he could get. I wasn't surprised as I am in a daily battle with the IRS, the Social Security Admin, and very loud neighbors. But what concerns me is that prior to the surgery, I was very athletic, had very low body fat, ate very well and my blood pressure was 120/80. I don't what has led to what, but I am no where like I was a little over 6 months ago. The Internist was so concerned that he gave me a two months supply of Hyzaar 50 (losartan potassium-hydrochlorothiazide). By the way, I still eat well. And I walk daily. Maybe I should drink more red wine. We have "Two Buck Chuck" here in California. Could be a way to an inexpensive recovery.
David
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Which Lori are you talking to, this one or that one? :D I get confuse with all the names stuff...
Sorry, Lorenzo - didn't think of the name stuff. I was referring to Lori (the one) or just plain Lori - although I don't think she's plain at all ;)
David - "Two Buck Chuck" that's a new one on me. But then again, I don't get around much. I'm probably dating myself, but back in college the cheap stuff we drank was called "Thunderbird" and as I recall it was pretty nasty :P
Jan
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LADavid,
We have some cheap gut rot stuff here too, but I fear that the cure in that case would be worse than the actual HBP. Better to get some decent wine, after all, only a small glass is needed, so the good bottle can last a bit... Cheaper than drugs too!
Jan, I knew you were talking about LoriFarFromPlain. lol
Ok, I e-mailed my doc at Stanford, and I have been told that HBP is NOT something I can blame on my AN. So, I guess that's the official word. So I presume it's me, need to exercise more again and get into a walking routine! Being a naturally lazy person, made worse by a brain tumour, I guess I can be blamed for this HBP lark on me! Of course stress is also a factor, but I can avoid that as much as possible.
Of course it could also be age related. Who knows.
Thanks all!
Ciao, Lorenzo
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Yes Lorenzo you are sooooooooooo OLD ;D
Bella
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well, at 24 one IS old! :)
Methuselah
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Hi Lorenzo,
Were there any "symptoms" associated with your HBP? Sometimes I feel like I get winded a lot easier than I used to -- and that my heart is working a lot harder during my workouts. I wonder sometimes if this is related to the treatment or perhaps the decadron course I took for three weeks in January.
Thanks,
Francesco
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HI Francesco,
Symptoms... not really, othet than being overly stressed and cranky and generally 'worked up' about things. Relaxing came a lot harde to me. Sleeping is disrupted too, but that could also be AN related, or tinnitus, or weather, or stars in the wrong alignment... Can't really say I had problems with being winded. Then again, I don't work out in any particularly strenuous way anyway. I never had the stamina for that.
Not much of answer, sorry! :)
Ciao, Lorenzo
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Lorenzo-
If you were a woman, I'd suggest blaming everything on menopause - but in your case, since you know women, you can still use that excuse... ;D Sleeplessness, crankiness, lack of energy, weight gain ... yep, sounds like menopause to me! ::)
Debbi
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Going back a few posts ago when some of you chose to denigrate "Two-Buck Chuck" wine and put it in the league of Thunderbird (my college favorite was Boone's Farm). Two Buck Chuck actually wins legitimate awards. Take a look at this link.
http://en.wikipedia.org/wiki/Charles_Shaw_wine
There's not much to say good about living in California (trust me), but at least we can get a decent bottle of wine for $2. And I do know wines. ;)
David (adding to his Trader Joes shopping list for tomorrow)
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Mea culpa, David.
I mentioned Thunderbird, but didn't mean to denigrate Two-Buck-Chuck. (Hmm, denigrate - we are talking like Jim Scott now :D )
I have actually never heard of Two-Buck-Chuck which was why I asked if it was similar to Thunderbird - which I am somewhat familiar with ;)
$2 for a good bottle of wine is very impressive. Perhaps you should mention this to Steve so he can stock up before the Symposium. He's buying all the drinks for the forumites, you know ;)
Jan
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I'm going to chime in on the "2 buck chuck" discussion in my newly anointed role as the forum's Northern CA wine snob ;D (perhaps I can sign onto the good ship PBW in that role)
Certainly what people like in wine is very individual, but it is important with $2 chuck to understand that Franzia ( the same people who bring you that wonderful stuff in the box) don't grow much of the fruit, but rather buy excess from other vineyards. In some cases they get grapes from some very top end wineries and in others they get low end stuff. So LA David is partially right that you can get some very drinkable wine from them, however you can also get absolute swill more often than not. There simply is no consistency from case to case. The rule for most of my friends who shop at trader Joe's is to go in an buy a bottle , take it to the car and try it. If it's drinkable, then go back in and buy the case assuming it's all from the same batch :o
Now for tonight's wine trivia question
The Cabernet Sauvignon grape is the offspring of what 2 varietals? For those who don't know and want to cheat, here's the answer :D
http://en.wikipedia.org/wiki/Cabernet_Sauvignon
Who says you can't learn unusual facts for your next party here ;)
Mark
Mark
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Well, I presume Cabernet would be the Cab Franc and the Sauv bit would be Sauvignon Blanc. Had some wonderful wines while being in CA to get zapped. Even visited Trader Joe a few times. Didn't do the drink in the car trick, but will the next time! Ya. nice wines... Especially some nice Petite Syrah and some lovely Cabernet Franc. Two buck chuck? Shall look out for it the next time! lol
Debbi, menopause? I KNEW there was a reason for all this! Now I have another excuse, as well as blaming the AN I can blame menopause. Excellent. Thank you!
Ok, off to find a bottle of nice Chinati riserva for lunch. I think there's one lurking in the stash...
Ciao, Lorenzo
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Lorenzo gets the prize! well done ;)
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Let me guess, prize is a bottle of Two Buck Chuck, right? :)
All this wine talk is lowering my blood pressure, I can feel it!
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Lorenzo, sorry to hear about blood pressure. I posted last year after OP on this subject because I also had high blood pressure post OP and only got it under control after about a month in reha with meds. I had elevated blood pressure for about 15 years but the Drs always said it was to low to start meds. but after surgery it didn't get under 160/95 without meds. When I posted I recieved a post from Gennysmom that I thought was very interesting.
Re: High blood pressure since the OP!!!
« Reply #15 on: 31 October 2007, 01:06:34 »
Reply with quote
Sorry I didn't see this one earlier. One cause could be that cranial nerve #10 is the vagus nerve, in charge of your heart function and digestion....my tumor was involved with #10, but did not have BP problems at all, but I've spoken with a cardiovascular surgeon who's a friend, and it's not outside the realm of possibility that any AN with BP related issues could be related to CR10 involvement.
Maybe AN could be the cause with some people.
Dan in Germany
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Debbi - that's funny - I was wondering if Lorenzo was suffering from a little PMS! But considering he is SOOOOOO old, maybe menopause is more accurate! :D
David, ah... Boone's Farm.... now there's some good stuff :P
Lori
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pms... PMS. PMS ME?!?!?!? NO, mamma mia! Ok, maybe just a little. That could certainly be the excuse. Good one. Somehow though, I don't think it would be taken seriously. Menopause sounds much more plausible; I think.
Dan, Thanks for the post and Gennysmom quote. Missed that somehow. Sounds interesting. hemmmm Something to think about.
Ciao, Lorenzo
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Lorenzo, I can see that you and I will need to compare wine notes. Personally, I am quite partial to the Willammette Valley (OR) pinot noirs, especially the 2004s. Heaven in a bottle. Of course, I am also quite partial to Chianti and applaud your decisoin to have a glass with lunch...
Lori - step away from the Boonesfarm, Thunderbird, etc - it could hurt you! It is meant for teenage experimentation, not for adults!! :P
So glad that Jim is buying all the drinks at the symposium - that Jim, what a guy!! (whoever he really is...) ;)
Debbi
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All you wine lovers....you should taste my husband's wine. His personal favourite is Petite Syrah. I've got a special bottle for Il Magnifico!! ;D
My husband makes White Zinfandel for me and a lovely white Pinot Grigrio.
Salute ;)
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I'm partial to good Rioja Reserva, lots of the super tuscan ones that cost an arm and a leg and I can't afford, some french from the south that we discovered on our last trip, and then some of the CA ones we had this time around. Discovered some nice Petite Syrah from the Santa Ynez Valley, had some really nice Coppola from around Napa area i think, and then some Cab Franc from near Palo Alto. :) But, I have a bottle of Sassicaia from the Chianti region that I'm keeping for a special occasion. Not even the three year anniversary of treatment was special enough for that. I think I'll wait until my 50th.
OR wines are unknown to me, can't get them in this part of the world. Sadly. Willamete Valley? Google, here I come.
Yardtick, I can't wait! I think it won prizes... slurp
Ok, maybe we'll be told to shift this conversation to a different thread... Although of course, wine is VERY relevant to blood pressure. In fact, I'm about to go and experiment with some prosecco shortly.
Ciao, Lorenzo
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Hhhmmm - well, since there's a book club on the forum, maybe we should start a wine club???
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hey, there's an idea. And maybe we could get discounts on bulk orders! lol Or, we could shift this into a new 'Alternative therapies' section.
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HHmmm - alternative therapies ... I like that. And, it could apply equally to pre-treatment, Wait and Watch, and Posties ... maybe we need to get Lori on this as an extension of the Garage Brain Surgery business...
Debbi (with apparently a little too much time on my hands this afternoon...)
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One has never too much time on one's hands! NEVER! It's good for recovery digressing into other non-AN subjects!
Well, there are garage wines, so why not garage brain surgery! Sounds good. That Nelgish Surgeon performed barin suregry using a Black & Decker drill, so why not do it in a garage... THE ultimate experience for those DIY nuts amongst us.
Now, about those bulk wine orders... I wonder. Yardtick, does he do bulk orders?
:)
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Why, yes, I'd be happy to store all the wine here. ;D How much of it do we need to have left to sell anyway? Just wondering. Not like I was planning on drinking all the profits. I suppose I could kick a few kids out of their rooms and make a storage room or two.
Don't worry, Debbi, the closest I come to the Boone's Farm any more is to point at it and laugh as I walk past it in the store. Ah, good memories - that and the Pabst Blue Ribbon beer. Teenagers must not have fully developed taste buds. :D
Lori
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Oh but teenagers do! For alcohol; any alcohol. Taste? Nah, that's for adults and fuddy duddies.
Ok, the last I know is that a minimum order of wine from a european winery is a pallet, ie around 200 bottles. Not bad, should last us about 2 months, maybe 3 at push. All under therapeutic expense of course. Wonder if the insurance would cover it? Problem is, I'm here, and your garage / store rooms are over there!
Boy, that Fitou (not prosecco after all) was good! :)
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Well, if you'd be willing to foot the bill, I'll gladly fly over there as many times as it takes to sneak a few bottles at a time into my suitcase. ;D The way the airlines are now, I'd probably wind up paying more for the suitcase to fly than I would for me to fly!
When my husband is out to sea (Navy), he always brings home LOTS of good Italian wine - maybe I'll have him float past you and pick some up on his next trip. Watch for him - he'll be on that big haze grey thing floating past dressed like the other 5000 people on board. You can't miss him.
Lori
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None of the harbours are big enough for of those cities to float into, and anyway, this is a neutral country, so warships are not welcome, generally. Unless of course they are on a visit, which this mission of picking up wine certainly is! :) Just arrange for them to drop by Dunmore East, but tell them to keep out at the 200 mile limit. I'll find a fishing vessel here locally to bring me and wine out. I'll get them to launch a flare, green one. Would that work?
Gees... what di thye put into that Fitou I just had??? French, can't be trusted with their freedom wine. :)
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Tell you what, I'll pack an inflatable raft for him in his seabag - then he can meet you half way for this international exchange of good will. It is in the interest of science afterall - we can use the profits from the sale of the wine to upgrade to the cordless power tools and a few extra rechargeable batteries. I hate when your drill battery dies on your right in the middle of drilling through a skull. :D
Lori
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SELLING the wine??? What are you talking about! This is for personal consumption! We all chip in in buying it, and then we share. Ok, drill bits and drills and batteries. Right, those are vital, but a different fund will have to be used for that. Capital Equipment maybe. Wine fund is R&D. Sorry.
He better get a zodiac organised, wine bottles are heavy. :)
PS, we haven't been told off by anybody yet... odd.
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AN international wine company. Maybe there is someone on the form that works in customs and could help, or we could make it into a military operation. I still have all my old
uniforms and can go onto all the military bases. I live in a wine region here in Germany and can buy French, Italian, Spanish, and German wines in just about every supermarket.
Dan in Germany
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so we could use all those great US military flights that stop over there to ship stuff back? Excellent! Good idea Dan. Where are you in Germany? I grew up in Switzerland, so wonder if I'm familiar with it. :)
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Yikes! What did I start with the 2Buck Chuck thing? And Mark, I do stand corrected. I've been fortunate in my purchases of TBC to get decent bottles. I was unaware of the inconsitencies. In my taste experience, I've put Shaw in the middle- range winery. Nothing to rave about but then nothing to find disgust in. I'll have to be less trusitng.
And Lori, I thought PBR was the choice of brews in the South. It seemed like when I lived there the back of every pick-em-up truck was piled high with crushed cans of PBR. Ah the memories.
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Lorenzo,
Great plan to use vino theraputically. I knew there had to be more good reasons to drink wine. My favorite, if money were no object, is Chambertin clos de beze. I used to be able to buy Chambertin futures at 10 dollars a bottle, yes, yes, that was some time ago. I've been "researching" New Zealand Pinot Noirs, some of these are quite good at a reasonable price. I have to admit I don't drink Italian wines too often, but I do buy Barolo (by Pio Cesare) to age. Wow, Barolo can be impressive. Good luck with your "treatments". ;)
Regards,
Rob
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Ah ya, Barolo. Lovely.... Vino Nobile? Brunello? Flaccianello? Tignanello? Sassicaia? Montefalco? Some of the reds from the Franciacorta, and maybe some of the Salice Salentino wines. Also some of the more carefully made Valpolicella Classico, and the really good Chianti Riserva or Rufina. Yum. Or Rubessco from Umbria, the good years I like New Zealand whites, some of them anyway.
I think this is a good excuse for wine drinking! Salute! :)
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*temporarily comes off moderating hiatus*
Um, folks... can we continue the grapely-wine talk to "AN Community"? I'll join you all there! ;)
*goes back to moderating hiatus*
Phyl
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She's baaaaaaccckkkkk! :D
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Just started reading this - what a fun time I've been missing! These are my obsevations:
#1 Debbi~
I think it is STEVE buying the drinks in Chicago, not Jim!
#2 If you are going to have a wine club then I could be in the wine club AND the book club and I wouldn't care if we read non-fiction books!! ;D
#3 Does anyone else think that it is strange that we hear NOTHING from Phyl until we start to mention ALCOHOL????
K
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Ooops, my bad - Since we don't really know who Jim is, is it any wonder I confused him with Steve??? Hey, I still have Ethel's toes in my head - don't blame me!
Phyl - sorry, some of us got carried away with the wine talk.
Kay, yes, let's drink AND read...
Debbi
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Geez, I leave you guys alone for a few hours and look what happens :o Now I know how Phyl feels ::)
K - you are right, it is STEVE who is in charge of buying drinks at the symposium, not Jim. BTW it looks like Debbi has picked up Jim's "my bad" expression :D
As for the AN International Wine Company, count me in (burp).
Okay, now who's going to listen to Phyl and move the thread ???
Jan
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Jan, probably not you - you tatooed rebel, you! ;D
And, Kay, that is a very astute (Maytag Jim would be proud) observation about Phyl... :D Won't she be disappointed if our "research" proves that wine is a cure for AN's? Hey, you never know!
Lori
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Sounds like a good cure to me! ;D ;D
K *off to pop a cork...*
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Lori, I would be delighted to move the thread - I always listen to Phyl and can't even believe you'd imply that I wouldn't :o you know how accommodating I can be.
Now, if I only knew how to move it. Where's a moderator when you need one? Maybe we should mention the word "alcohol" again ;)
Jan
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Don't ask me - I still can't figure out how to get a picture into a post...
Debbi - officially having my last IV "cocktail" -- Yippee!!!!!!
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*grabs thread.... and a lovely bottle of **Henri Giraud, a lovely Pinot-led Champagne with excellent Prestige Cuvee fermented in Argonne oak, over to the "AN Community" new thread entitled... "ANA Wine Club"*
See you all there!
(**Google or pick up a copy of Hugh Johnson's Pocket Wine Book 2007 for reference :) Bloke brought us a bottle from the UK... good stuff! :) )
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Thanks, Phyl.
You always seem to be there when we need you.
How do you do that ???
Jan
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Right. So, just to prove the point I started with: my readings have been in the 150s / 100 or so. Last couple of days I had a glass of wine with meals, and hey presto, my BP was down to 129/78. If that doesn't prove the beneficial properties of a good Chianti / Cab Franc / Petite Syrah / plonk, then I don't know what does!
Ok, end of wine talk here. Over to the other thread, as per our invigilator's request. Right she is too. Sorry Phyl.
Ciao, Lorenzo :)
a little later: this morning's reading were back to a respectable 143.96; wine works short term.