# Interstitial Cystitis



## Friday (Mar 23, 2008)

I know that I am not the only person on the board that suffers from this. It's an inflammation of the lining of the bladder (there are no cysts involved, no clue how that got in there), and frankly Scarlett, it's kicking my ass right now.

I've read just about everything on the net, I've been through all the unpleasantness with the urologist (feet in stirrups while they catheterize you so they can go in and take pix is not my idea of fun. Then they tell you that you've got it (which you'd already figured out) and tell you that the only treatment is a surgery with a whopping 25% success rate. Oh fun, oh joy. They should tell you that first and you could just skip cooch crawling.

Anyway, why I'm bringing all this up is...have any of you found anything in particular that seems to sooth this beast? Something you cut from your diet or maybe something you added. I take Prelief when I eat. I've already cut any form of tomatoes or citrus (I squeezed a wedge of lemon over my vegies last night and boy am I paying today), I don't drink coffee and have cut way back on the DC (if I have to eliminate entirely I may never be fully awake again), chocolate has been pretty much eliminated, spices with any kind of heat are out (I'm not giving up garlic, you can just shoot me if that's what it takes). Alcohol is down to a minimum. I'm getting tired of scrambled eggs.

Ideas???


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## Risible (Mar 23, 2008)

I have nothing helpful to say other than ... I think I may suffer from this too. My trigger is alcohol. It seems like no sooner do I take a sip of beer, wine or any other alcoholic beverage than I can feel a burning sensation; weird, huh? Unfortunately for me, intercourse seems to trigger it too.  and . So, if this is a trigger for you as well, lay off the sex, Friday. 

BTW, cyst refers to bladder, I remember that from my medical transcription days. Latin term for urinary bladder is vesica urinaria, vesical referring to cyst.

The burning sensation I get doesn't bother me that much; at least, not enough to undergo testing like you had for an official diagnosis.


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## Friday (Mar 24, 2008)

Well that explains the cyst part at least, thanks Ris. Sex doesn't bother me. My issues are definitely up in the bladder rather than the urethra. Every time it subsides for a while I think that it's finally gone away (which it sometimes does as spontaneously as it shows up) and then Wham! It gets you right in the gut. The worst part is trying to sleep. You end up getting up every 30-40 minutes hoping that if you pee it'll settle down since it feels somewhat akin to a bladder infection. Never helps though and it's hard to get much rest in 30 minute increments.

Guess I just have to ride it out again. I tell you, this shit makes me watch what I eat a hell of a lot more carefully than my borderline diabetes does. 

ETA: Where's that light bulb smilie? I just figured out what may have kicked this up so bad this time. We had a potluck at work Friday. One of the guys brought General Tsao's chicken from his favorite take out. It was medium spicy and I ate it twice. Dumb, dumb, dumb. :doh: Won't do that again.


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## Miss Vickie (Mar 24, 2008)

First of all, owie. I'm sorry you're dealing with this. I've had numerous UTI's and I imagine the pain is very similar and... yeah... ow.

Do any of the lower urinary tract anesthetics work at all? Things like pyridium, released OTC as Uristat? I found it really helpful at the prescribed levels, but I don't think that the OTC levels work as well. And ya gotta love that "turn your pee the color of orange Easter egg dye" aspect, eh?

Also, not sure how open you are to homeopathy, but I used to get cystitis a lot (they quaintly called it "honeymoon cystitis" since I got it after... well... you know) and the Naturopaths I worked with gave me a homeopathic remedy called cantharis. I was totally skeptical at the time, so I know it wasn't placebo, and damn if it didn't help a lot. Later when I started getting UTI's frequently, it didn't work as well but if I caught it early and treated myself when it was inflammation only, the cantharis worked well. I'm sure you can get it at health food stores; it's a "cheap thrill" and bound to work. If you were a mind to it, you could even head to the Bastyr Clinic in Seattle and see what they'd prescribe.


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## Friday (Mar 24, 2008)

You know Vick, I have some Azo (OTC version) from when I had that damn kidney infection (which may also have helped start this most recent go round), so I'm going to try it. I don't know what the prescribed levels would be so I'll go with the 'as directed' for now. I DO know I don't want to take any more Vicodin or I'll have whole 'nother set of problems...besides, it's not really helping that much. I'll make some oatmeal to take the Azo with as Rx strength made me sicker than a dog without food (that's when I figured out how much more pleasant it is to use a sink with a garbage disposal to upchuck into than a toilet...I couldn't make it to the toilet). The screaming orange urine is hard on undies, but at this point I'll buy new ones if it will just quit hurting.


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## moore2me (Mar 24, 2008)

Friday, Having just gotten over another bladder infection myself, I know how bothersome these things can be. I can only imagine the torture of going thru that as a chronic condition type of feeling. Yikes!!!

I looked "*Interstitial Cystitus*" up in Merck this morning and have pasted their info below along with a link to the article. Hope some of it helps.

From Merck Manual at
http://www.merck.com/mmpe/sec17/ch228/ch228e.html?qt=interstitial cystitis&alt=sh

*Interstitial cystitis* is noninfectious bladder inflammation that causes pain (suprapubic, pelvic, and abdominal), urinary frequency, and urgency with incontinence. Diagnosis is by history and exclusion of other disorders clinically and by cystoscopy and biopsy. With treatment, most patients improve, but cure is rare. Treatment varies but includes dietary changes, bladder training, pentosan, analgesics, and intravesical therapies. 

Incidence of interstitial cystitis is unknown, but the disorder appears to be more common than once thought and may underlie other clinical syndromes (eg, chronic pelvic pain). Whites are more susceptible, and 90% of cases occur in women.

Cause is unknown, but pathophysiology may involve loss of protective urothelial mucin, with penetration of urinary K and other substances into the bladder wall, activation of sensory nerves, and smooth muscle damage. Mast cells may mediate the process, but their role is unclear.

Symptoms and Signs
Interstitial cystitis is initially asymptomatic, but symptoms appear and worsen over years as the bladder wall is damaged. Suprapubic and pelvic pressure or pain occurs, usually with urinary frequency (up to 60 times/day) or urgency. These symptoms worsen as the bladder fills and diminish when patients void; in some people, symptoms worsen during ovulation, menstruation, seasonal allergies, physical or emotional stress, or sexual intercourse. Foods with high K content (eg, citrus fruits, chocolate, caffeinated drinks, tomatoes) may cause exacerbations. Tobacco, alcohol, and spicy foods may worsen symptoms. If the bladder wall becomes scarred, bladder compliance and capacity decrease, causing urinary urgency and frequency.

Diagnosis
	Clinical
	Cystoscopy

Diagnosis is suggested by symptoms after testing has excluded more common disorders that cause similar symptoms (eg, UTIs, pelvic inflammatory disease, chronic prostatitis or prostatodynia, diverticulitis). Cystoscopy is necessary and sometimes reveals benign bladder (Hunner's) ulcers; biopsy is required to exclude bladder cancer. Assessment of symptoms with a standardized symptom scale or during intravesical KCl infusion (K sensitivity testing) may improve diagnostic accuracy but is not yet routine practice.

*Treatment*
 Diet modification
 Bladder training
 Drugs eg, pentosan (such as ELMIRON) , tricyclic antidepressants, NSAIDs, dimethyl sulfoxide (such as RIMSO-50) instillation)
 Surgery as last resort

Up to 90% of patients improve with treatment, but cure is rare. Treatment should involve avoidance of tobacco, alcohol, foods with high K content, and spicy foods as well as bladder training, drugs, intravesical therapies, and surgery as needed. Stress reduction and biofeedback (to strenghten pelvic floor muscles, eg, with Kegel exercises) may help. No treatment has been proved effective, but a combination of &#8805; 2 nonsurgical treatments is recommended before surgery is considered.

The most commonly used drug is pentosan (SUCH AS ELMIRON) , or a heparin (such as HEPFLUSH-10) similar to urothelial glycosaminoglycan; doses of 100 mg po tid may help restore the bladder's protective surface lining. Improvement may not be noticed for 2 to 4 mo. Intravesical instillation of 15 mL of a solution containing 100 mg of pentosan (such as ELMIRON) or 40,000 units of heparin (such as HEPFLUSH-10) plus 80 mg of lidocaine (such as XYLOCAINE) and 3 mL of Na bicarbonate may benefit patients unresponsive to oral drugs. 

Tricyclic antidepressants eg, imipramine (such as TOFRANIL) 25 to 50 mg po once/day) and NSAIDs in standard doses may relieve pain. Antihistamines (eg, hydroxyzine (such as ATARAX OR VISTARIL) 10 to 50 mg once before bedtime) may help by directly inhibiting mast cells or by blocking allergic triggers.

Dimethyl sulfoxide (such as RIMSO-50) instilled into the bladder through a catheter and retained for 15 min may deplete substance P and trigger mast cell granulation; 50 mL q 1 to 2 wk for 6 to 8 wk, repeated as needed, relieves symptoms in up to ½ of patients. Intravesical instillation of BCG and hyaluronic acid are under study.

Bladder hydrodistention, cystoscopic resection of a Hunner's ulcer, and sacral nerve root (S3) stimulation help some patients.

Surgery (eg, partial cystectomy, bladder augmentation, neobladder, and urinary diversion) is a last resort for patients with intolerable pain refractory to all other treatments. Outcome is unpredictable; in some patients, symptoms persist.


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## Ruby Ripples (Mar 24, 2008)

Risible said:


> I have nothing helpful to say other than ... I think I may suffer from this too. My trigger is alcohol. It seems like no sooner do I take a sip of beer, wine or any other alcoholic beverage than I can feel a burning sensation; weird, huh? Unfortunately for me, intercourse seems to trigger it too.  and . So, if this is a trigger for you as well, lay off the sex, Friday.
> 
> BTW, cyst refers to bladder, I remember that from my medical transcription days. Latin term for urinary bladder is vesica urinaria, vesical referring to cyst.
> 
> The burning sensation I get doesn't bother me that much; at least, not enough to undergo testing like you had for an official diagnosis.



Not that it's of much help, but cystitis is also known as "the honeymoon disease" because.. well you can guess, lol. So, yes intercourse can bring it on, definitely.


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## LillyBBBW (Mar 24, 2008)

Nothing beyond the usual suspects. I beef up my water intake and buy natural cranberry juice. If I know I'm going to eat Mexican or engage in honeymooner activity I beef up the water intake (and make sure I hit the loo immediatley after). I hate hate hate to drink water. It is a concerted effort for me but I find it is what helps. A relative of mind swears by aloe vera juice she buys at GNC. *shrugs* I've never tried it though.


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## Risible (Mar 24, 2008)

Oh, that's right, I have heard of that - honeymooner's disease. Well, the honeymoon is long over, so I guess I've debunked that term. 

Vickie, thanks for that recommendation on cantharis; I'm going to check that out. There are times when I'm more sensitive than others, when it feels, for a few days, like it may develop into a UTI (it's been a couple years since I had a full-blown UTI, though), and it'd be helpful to take something beyond drinking cranberry juice to get through it.

And, Friday, yeah, the pain is very sobering. Relentless and all consuming, *nothing* can make me comfortable when it gets bad. I'm sorry to hear that's where you're at.


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## Gina (Mar 24, 2008)

I know I rarely post on these boards, but I must post about this. I have suffered with IC now for a couple of years.

IC is different than a UTI, and must be treated differently. For example, for UTI a doctor will recommend drinking alot of cranberry juice. For someone with IC, it is one of the worst things you can do. While everyone who has it is different, and can have symptoms relieved with a myriad of drug combinations, there is definitely a diet component that will lessen your pain. It's pretty universal that anything citrus is a trigger. Boy I know I miss oranges.. Coffee, sodas, artificial sweeteners, chocolate, soy... all these can trigger a flare. Anyway what I did want to say was the place that I have found the most support and information about IC is at the ICN located at: http://www.ic-network.com/

There is an amazing amount of information there, as well as a hugely supportive board, found at the top of that page under get support. 

Please, anyone with IC, if you haven't already been there, please go and look at the information found there. 

After following the diet there, and with the help of a very understanding doctor who was willing to try various medicine combinations, I am now mostly pain free. And for someone who was in excruciating pain for almost a year and didn't know why, this is a blessing.

Gina


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## Miss Vickie (Mar 24, 2008)

Friday said:


> You know Vick, I have some Azo (OTC version) from when I had that damn kidney infection (which may also have helped start this most recent go round), so I'm going to try it. I don't know what the prescribed levels would be so I'll go with the 'as directed' for now. I DO know I don't want to take any more Vicodin or I'll have whole 'nother set of problems...besides, it's not really helping that much. I'll make some oatmeal to take the Azo with as Rx strength made me sicker than a dog without food (that's when I figured out how much more pleasant it is to use a sink with a garbage disposal to upchuck into than a toilet...I couldn't make it to the toilet). The screaming orange urine is hard on undies, but at this point I'll buy new ones if it will just quit hurting.



I hope it helps, darlin'. Just keep drinking lots of water to get it where you need it. And seriously, check out the cantharis. I bet it'll help a little. 



Ruby Ripples said:


> Not that it's of much help, but cystitis is also known as "the honeymoon disease" because.. well you can guess, lol. So, yes intercourse can bring it on, definitely.



Oh yeah. I learned early on to pee right after doing the deed 'cause otherwise I'd be in misery. Interestingly, once I stopped having to use a diaphragm for birth control I stopped having them; I think something about the edge of it pressing against my urethra didn't help. My gynie naturally denies this but I think the evidence is pretty clear.



Risible said:


> Vickie, thanks for that recommendation on cantharis; I'm going to check that out. There are times when I'm more sensitive than others, when it feels, for a few days, like it may develop into a UTI (it's been a couple years since I had a full-blown UTI, though), and it'd be helpful to take something beyond drinking cranberry juice to get through it.



Yeah, I figure it can't hurt, right? You probably know this but with homeopathic remedies you let them dissolve under your tongue and don't eat anything before or after because it can inhibit their effectiveness.


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## love dubh (Mar 24, 2008)

Hm...maybe not the place to bring this up, but it is somewhat related. After having a few beers and having sex (has to be one after the other), my boyfriend gets what he describes as a UTI. It only lasts a few hours, but it sounds like the murderous urinary death that you're describing.


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## Friday (Mar 24, 2008)

The difference is that the pain (at least for me) is strictly confined to the bladder itself. There is no burning sensation when I urinate which is common with UTI's, or increase in the symptoms after sex. I think sex can definitely irritate the urethra in both sexes, but it is rare I think for sex to cause pain in the bladder itself. Likewise, this stuff isn't going away.

Thanks for the article Moore. I'm going to call the doc tomorrow and ask about the drugs mentioned. As far as the cystoscopy, btdt. It was what I so affectionately refered to as cooch crawling. In light of the fact that it produced zero results improvement wise, I'm in no hurry to repeat the experience. I've already made the diet modifications and as far as I know I've been bladder trained since I got out of dyddies. I'm not desperate enough (yet) to have my bladder 'flushed' and a surgery with a 25% success rate is as they said 'a last resort'.

I must admit that the use of Heparin puzzles me since I've always thought of it as a blood thinner, but I am assuredly asking about that and the Pentosan. I'm already on antihistamines for allergies and Ibuprofen doesn't seem to dent the pain, nor did the Vicodin for that matter so I think it's time to bring up other options. My doc is easy to work with.


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## Friday (Mar 25, 2008)

Gina, thank you so much for delurking to post this link. They have a wealth of info I've never heard before (I haven't researched in the last couple years because my IC was pretty much dormant). I had no idea that muscle relaxers could help and had pretty much eliminated taking them after my back strain healed up. I still have a whole bottle full that evidently will come in handy now. No more vitamins for me since there's plenty of D in my Calcium supplement and my iron levels are above normal. 

There are some no-no foods on the dietary list that really surprised me. I would never have thought that nuts and most cheeses would be a trigger. I don't know what I'll do about the fruit. I like pears but don't love them and I despise blueberries. Everything I love is in the red column. That's going to be tough. If it doesn't calm down in a few days I may be calling the doc about the Elmiron even though I already have hair loss issues. I know that I miss tomatoes as well as citrus and I definitely miss being able to eat anything at all spicy. That caveat about soy sauce may be a problem, we do a lot of stir fry at my house to get in more vegies and less meat (and because it's easy and I'm lazy), but I think once I get it under control again and eliminate some of the daily stuff that causes flares, hopefully we (the bladder and I) can co-exist in a state of uneasy peace.

Again, I thank you very much.




Gina said:


> I know I rarely post on these boards, but I must post about this. I have suffered with IC now for a couple of years.
> 
> IC is different than a UTI, and must be treated differently. For example, for UTI a doctor will recommend drinking alot of cranberry juice. For someone with IC, it is one of the worst things you can do. While everyone who has it is different, and can have symptoms relieved with a myriad of drug combinations, there is definitely a diet component that will lessen your pain. It's pretty universal that anything citrus is a trigger. Boy I know I miss oranges.. Coffee, sodas, artificial sweeteners, chocolate, soy... all these can trigger a flare. Anyway what I did want to say was the place that I have found the most support and information about IC is at the ICN located at: http://www.ic-network.com/
> 
> ...


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## Gina (Mar 25, 2008)

Quite welcome!

Like I said, there are so many different drug combinations that are available, and everyone responds differently. For example, even if you already take an anti-depressant, it may not be the right one, as the one that helps IC is specifically a tri-cyclic. I too have the majority of the pain in the urethra, and for me giving up my diet coke was the worst. 

After you get calmed down, you can slowly try to add things back.. One at a time, to see if it irritates you specifically. Some people can eat chocolate, drink coffee, or have soy quite successfully. You just have to see how you respond. 

As far as the Elmiron and hair loss, I really didnt notice any significant loss, and Ive been taking it for a couple years. Prelief is a godsend for me. I will take some if Im eating something that is Iffy.. Also, in conjuction with the Elmiron I take the Desert Harvest Aloe Vera. It has to be this brand specifically because other manufacturers do not process it in the way we need it, and on top of that they leave compounds in it that can cause gastric issues, and who needs that? There web site is: http://www.desertharvest.com/

I also found that a very small dose of valium helps relax the muscles in the pelvic floor, and that in turn made my urethral pain almost non-existant.

Anyway, there are tons of caring people over there, and their boards are quite warm and welcoming. It really is nice to be able to go there, and ask question after question and not worry about looking stupid or ignorant. 

Gina


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## Friday (Mar 26, 2008)

The doctor actually gave me Xanax when this first started flaring this time. You always notice it at night first and there were some of those lovely speed bumps in the road of life that we all get I was trying to deal with at the time so we thought it might help, and it did until the last week or so. Is there any reason to think Valium might work better because he'd switch me if I asked.

I've spent a lot of time the last 48 hours going over in my mind what might have triggered this. There were several things out of the ordinary that I consumed last week that I usually wouldn't, like too much Easter chocolate and beer (a friend of mine was filling in as a bartender so I stopped in several nights after work), plus like I said, I foolishly ate that spicy Chinese even though I could SEE the peppers in it before I even took a bite. I also had just started taking vitamins again. Too many screw ups at one time.

I've cut out vitamins and even though it may kill me I'm going to stay off the Diet Coke until this clears up and then limit myself to 1 a day in the AM. I'm definitely off most everything in the no-no list for a while...at least until the peaches come in. I must have peaches.  I'm going to put the Elmiron on hold at least for a bit because I really do have hair loss issues already and I've been fighting the Benji Franklin look since I was 30. I'm in a holding pattern there and I'd like to keep it that way if I possibly can. I am going to try the Aloe Vera though and I'm going to try the Vickster's cantharis. Natural appeals to me and I take too damn many pills already anyway.

Thanks again. I wish you'd pipe up more often.

ETA: What form of the Aloe Vera are you using?


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## Gina (Mar 26, 2008)

Oh Diet Coke... you know that was the hardest thing for me to give up.. If you must have it, try to put it in a glass with lots of ice, or drink alot of water afterwards to help dilute it in your system. 

For some reason, the valium works on the pelvic floor, when none of the other relaxants do. I take the smallest dose, 2mg.. and I felt the difference almost immediately. I also take Imipramine ( the generic for Tofranil) 10 mg , 1 or 2 tablets at bedtime. This is a tri-cyclic antidepressant. I was taking 20mg of Prozac until I read on the boards that Imipramine can help, so I asked my Dr and he was willing to give that to me, but wanted to keep me on the Prozac too, so he dropped the dose of the Prozac to 10mg. You also might want to inquire about Atarax or Vistaril (Hyrdoxyzine HCL) which is an antihistamine. I take 1 25mg tablet 3x a day. I dont have hugely bad allergies, but this particular med takes on any mast cells found in your bladder. Like I said, there are a myriad of drugs available, and taken in various stengths and combinations that can help manage IC. These are what works for me. 

As far as the chocolate bunnies, the beer, the chinese food, the vitamins.. wow yeah thats alot of potential triggers at one time. Many people with IC however swear that drinking a vanilla milk shake ( has to be a real one with real milk etc in it.. some fast food places do do that) will help calm a raging bladder.

I know the IC site has a lot of information and it can be intimidating to try to get through it all. But it sure helped me. The people on the boards over there are so nice and helpful too, like I said. They arent shy about answering any question, no matter how.. um.. personal it might be. 

Give your bladder some time to get over the triggers. It could take some time. In the meanwhile, drink alot of water. If your tap water where you live is more acidic, you might wanna drink some bottled water for a while. There are some of those that are better than others. Or you might wanna consider some kind of filter for your tap water. We have one of those under the kitchen sink reverse osmosis ones, and it works wonderfully. I think there are other types that will work as well. 

Hope Im not driving you nuts with all this info.. I just want to share what I know so you can stop hurting faster.

Gina


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## Friday (Mar 27, 2008)

I appreciate it all Gina. Just cutting the vitamins, going back on the muscle relaxers I'd stuffed in the back of the cupboard, switching my antihistamine from am to bedtime (I have tree pollen allergies), cutting out the DC and pretty much eating chicken, whole grain bread, cream cheese, scrambled eggs and oatmeal (and not much else) for several days has done wonders. I actually only got up to piddle once last night. That in itself is a freakin' miracle. I went ahead and ordered some of the Aloe Vera capsules last night. I reread what you'd written and some of the stuff on the IC message board and it sounded like most preferred the caps to the gel stuff you drink. I'm going to call the doc tomorrow about Urised which can be taken longer than pyridium without endangering your kidneys. It would be nice if I could use that rather than Vicodin as an analgesic. I deal with math and large sums of money at work and I really prefer to do it with a non-narcotic fuzzed brain...fewer fubars. Well...and I'd rather go blue green than orange. I'm not an orange sort of girl. 

ETA: I went back on the Glucosamone/Chondroitin too. Another item that had been shoved to the back of the cabinet. I think that I am extremely fortunate in that mine (for now at least) seems to be fairly easily controlled. I remember when I got my first flare, had not an effing clue what it was and the doc just kept telling me I didn't have a UTI. It was hell. This in comparison is just a pain in the butt. I can deal.


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## moore2me (Mar 27, 2008)

About Diet Coke - I read where caffeine is a trigger for IC, so I thought about Caffeine Free Diet Coke. But the triggers are also acidic foods (diet coke is acidic) and has artifical sweetners too - so I guess its a no-go?


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## Friday (Mar 29, 2008)

They say the artificial sweeteners are a no go too and I don't like sugar sweetened pop, not even when I was a kid. I drink too much of it anyway so cutting back is a good idea. If I can have just one when I get up to kick start my brain, I can live with that. My real carp (no, not the fish) is that they don't have much of a choice on that green list for beverages. Water and peppermint or chamomile tea. That's it. So I'll definitely be trying to find other beverages I can tolerate.


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