/*Hi, tika!

Crystal Light is no great thing to drink either.
Check out if it has aspartame. It is a poison.

Congrats on the BP!

Peace and Blessings!
CoachRichie
http://www.InnerGameOfPKD.com

oh and btw, most tap water contains flouride - with has been proven to cause kidney failure even in those without kidney problems. Plus all the other crap it has.

And bottled water isn't all that great either because the chemicals from the plastic leak in to the water. Those chemicals disrupt our horomones and cause a world of problems.

idk what we should do... I'd say our best bet is to use non-plastic containers and go to natural springs and get the water ourselves. But I'm sure there's something bad in that water too. Unless maybe you also filter it. That's a lot of work for some water. I guess you gotta choose your battles. But yeah, watch out for that aspartame. Most things that have no sugar or low or reduced sugar have aspartame which is waaaay worse than sugar. You're better off just eating totally different foods that are naturally sugar free and have no additives - in other words - grow you're own fruits and vegetables and juice them yourself.

Stupid money grubbing society...

ok Coach and Alona, now I'm afraid to eat or drink anything.
we don't all have the luxury of living on a farm with a good clean stream so all our food and drink can be pure and natural.
water is still the best thing to drink and the amounts of fluoride are very low. foods should be prepared from scratch, fresh or veggies frozen without sauces are far better than canned, same with fruit.
we use Splenda for sweetening, Jim is diabetic and me with a transplant I am at risk for diabetes. I haven't yet heard horror stories about Splenda but I'm sure I will.
choose your battles is the way to go, unless you can grow all your own produce and collect rainwater, do the best you can.
good work Tika in staying away from the Pepsi, I'll be Crystal Lite is way safer and it doesn't have high phosphorous like Pepsi.

ok, if Crystal light isn't a good drink to have, what is - besides water? All I am saying is that I am taking your advice about the diet pepsi. Its not like I drink Crystal light all day long by itself. I do not over indulge with crystal light. I drink a glass at lunchtime and 1 glass in the evening. The rest is water. I do have my water bottle (not store bought) infront of me. Its just tap water out of the faucet (thats bad for me too, I am sure). There is nothing I can do about that, at least I am getting my water in. I live in a duplex and its out of the question to grow my own vegs!

Beginning to think everything I do is not good for me.

Thanks Coach, thats the nicest thing you said to me. Thanks for the congratuations.

Tika,
Congratulations on the lower blood pressure--that's fabulous!

And the Crystal Light, in moderation, like everything else, is just fine. I like their lemonade (I tend towards tart versus sweet). Water is fine but like you, sometimes I need a change and their lemonade fits the bill. Since I have to sip just a little throughout the day (my liver has my stomach so compressed I can't "drink" a glass of water; it takes the better part of 30 minutes to get 8 ounces down...and no food at the same time), Crystal Light works great as it doesn't spoil quickly and it tastes good at room temperature.

Even my nephrologist agrees we all need our vices, as long as we keep them in moderation. So enjoy!

Having spent 48 years drinking tap water (only a few of those in countries that do not fluoridate their water), I think it's just fine. There is some discussion about fluoride and kidneys, but not all of us can afford or have the room for reverse osmosis filters and bottled water is generally just tap water with a fancy label. I have a filter on my fridge, but that doesn't filter out the fluoride and in any case I tend to just fill my bottle (stainless steel) from the tap instead of the fridge. Besides, my stomach prefers room temperature water so I can drink more, which is always a good thing.

I think you're doing fabulous!
Lots of hugs,
Ruth

PS Isn't it a shame that hospitals, the places you go to regain your health, have the most atrocious, greasy, unidentifiable food, even in the cafeteria? What a difference it would make for the patients and the staff if they would focus on healthy foods as well as health care!

Be very cautious about sugar substitutes. They are very bad. Listen to Coach Ritchie's advice.

Congratulations on the BP lowering.

Joni

thanks Ruth, everything in moderation. Just gotta aim for the plain ole H2O as my main sorce of beverage. Maybe I should just put in 1/2 tub of crystal light in the 2 quart container instead. Kinda just to flavor the water? Some flavors are pretty strong even when you make the 2 quart container. Just a thought.....I know its bad either way.

I know I mentioned this on another post, has anyone tried that Fuze juice? Was wondering what people thought of that.

Thanks for the kind words of encouragement. I don't see my primary until the end of this month and will see what she has to say.

Tika,
My brother, who also has PKD, is an avid hiker and sea kayaker, who uses and abuses his stainless steel water bottles to extreme degrees (cooks soup in them, etc.). Based on his experience, he recommends keeping one of them for water only. Apparently he tried iced tea, Crystal Light or some other beverage mix in one of his water bottles and the container has never been the same (thus it's become the "use and abuse" container). As such, I'd recommend sticking with water only in your water bottle and perhaps bringing a glass (versus the styrofoam or plastic containers available at the hospital) to work for you midday Crystal Light (16 oz glass or use a regular glass and only drink 8 oz and save the other half of the single use container for the next day).

At home you could just make 2 quarts of the Crystal light (ideally in a glass container) and use for that for dinner; covered it should last a full week and won't take on any of the flavors/scents of whatever else is in the fridge.
Hugs,
Ruth

For all,
Dealing with a new diagnosis of PKD is hard enough, then there's a new way of thinking in terms of diet to consider; for some it's major changes, for some it's only little tweaks. Nonetheless, there is no need to attack an individual when their changes don't meet YOUR preconceived standards, when they haven't gone as far as YOU think they should have or they are doing something YOU don't think they should be doing. No one on this board is perfect, not a single one of us, and we each make our decisions based not only on our knowledge, but also on the availability of fresh wholesome foods in our community, and our budgets. None of us live in Eden and have access to pure spring water (if such even exists anywhere in the world), with pure organic food brougt to our tables everyday. And even if we did, someone would inevitably lambast us for our choice to make a small amount of full-fat organic ice cream as a summertime treat!

Support and educated instead of frighten and alienate. And if you're going to educate, be sure you have your information straight first and then use sources. The following website is an excellent reference for the issue of fluoridated water: http://www.kidney.org/atoz/content/Fluoride.cfm

Ruth

tikasiamese,
Lucky me, I live if Florida, land of springs, so I can get local spring water, the real deal. When I put a glass of it next to a glass of my tap water, gross, the tap water has a color and the spring water is perfectly clear. But, it does come in plastic..... To add to the water alternatives, I've found that a splash of pomegranate juice in mineral water is yummy. Puhlease don't tell me mineral water is bad! As per your lowered BPs (and yea!!), here's a little something that Dr Rahbari (Emory, HALT study) shared with me when we talked about my husband's cancer and BP. Dr Rahbari found that if his HBP patients developed cancer, they had a very hard time controlling their previously under control BPs. Maybe, in your case, this means your cancer is really gone!!
Ruth, I didn't perceive any of the previous comments to be attacks, just strongly held beliefs.
Lisa

Lhanley - You know, I never really thought of that. The thing is that whenever I had my BP checked during all my cancer appts, it was really high (138/94). I hope your right. I will have to check it in a few days, going to a rite aid or walgreens store and see for myself.

thanks for the positive and uplifting reply. I really needed it - it means a lot to me.

Jen

Ruth, I love your story about your brothers waterbottle. LOL!!! Too funny. I do have a "water" only bottle at my desk and my 2 quart crystal light container for just that. I have been taking all this advice about it and trying to cut the crystal light down to 1 8 oz glass at dinnertime (or afterwards). Water as my main sorce, others secondary...there you go!

Thanks so much for the website. There is some people on here that sound so discouraging. I am a sensitive person. People like you really make me think about how I need to deal with this disease. I just got over breast cancer for god sakes.

Its funny how you mention living in Eden. I am actually from Angola NY and Eden NY is only about 10 miles away..LOL!!!

Jen

Jen,
You're more than welcome!
lhanley