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Slowly Starving To Death Because Of Bladder(ic) Have A Question About Red Clover? Slowly Starving To Death Because Of Bladder(ic) Have A Question About Red Clover?

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  #11  
Unread 05-26-2003, 07:55 PM
THANK YOU ALL SO MUCH FOR RESPONDING

TO EVERYONE, THANK YOU, THANK YOU. I CANT DRINK CRANEBERRY JUICE BECAUSE IT IS ACIDIC AND ACIDITY AGGREVATES MY BLADDER MORE. AS WELL WITH ANYTHING THING WITH CITRIC ACID IN IT. MOST FOODS HAVE CITIRC ACID AND PERSERVATIVES EVEN DYES IN THE FOOD FOR COLOR. ALL OF THOSE THINGS ACTIVATE MY BLADDER.I DONT HAVE PAIN WHEN PEEING ANYMORE BUT THE PICKING AND ITCHING BELOW (PRIVATE PARTS GOES HAND IN HAND WITH THE BLADDER PROBLEM).I AM SO WEAK AND EXHAUSTED FROM NOT BEING ABLE TO EAT. I WAS TO MY UROLOGIST HE SAID I DONT KNOW WHAT ELSE TO DO FOR YOU..BUT HE GAVE ME AN INSTILLIATION INJECTION OF DHSMO. THE ONLY THING IT DID WAS TAKE AWAY THE PAIN WHEN PEEING BUT IT DOESNT HELP WITH THE FOOD SITUATION OR PRIVATE PART SITUATION. IF I SMELL CHEMICALS (AT THIS POINT I DONT KNOW WHAT TRIGGERS THIS) IT ACTIVATES THE BLADDER PROBLEM. IT QUIETS DOWN FOR A BIT (ONLY IF I DONT EAT..AS LONG AS I DONT EAT IT STAYS SETTLED DOWN ONLY TO RETURN WITH A VENGENCE IF I DO TRY TO EAT).I CANT TAKE THE ORAL MEDS HE GAVE ME FOR SURLY THEY WOULD DO THE TRICK. TOO CHEMICAL SENSITVE TO THE DRUGS AS YOU ALL WELL KNOW. I AM SO SCARED. I DID BUY WATER. I CANT DRINK MY TAP WATER.THAT BOTHERS ME.IF I DRINK ENSURE THERE ARE PERSERVATIVES IN THAT TOO WHICH I AM SENSITVE TO. I AM A MESS.I AM AFARID I WILL DIE OF STARVATION. I AM DEHYDRATED .MY MOUTH FEELS LIKE COTTON. I WILL GO TO THE ER TOMORROW AND HOPEFULLY THEY CAN GET SOME FLUIDS IN ME. THANK YOU ALL SO MUCH. WENDY SILVERFER(LYNN) SUFERBABE AND KIM AND NATURE FOR BEING HERE FOR ME AND CARING SO MUCH...ALWAYS ANGEL(CHRIS)
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  #12  
Unread 05-26-2003, 08:08 PM
Slowly Starving To Death Because Of Bladder(ic) Have A Question About Red Clover?

Angeleyes, Do take care and keep us informed. My prayers are with you. Nature1715
  #13  
Unread 05-26-2003, 09:53 PM
Slowly Starving To Death Because Of Bladder(ic) Have A Question About Red Clover?

Angeleyes,

There IS an answer for you, you just need to find it. Have you seen a Clinical Ecologist? There are a few places in the States that have special units that treat seriously ill people with chemical sensitivities. Maybe you need to find one of these, but in the meantime a doctor who deals with chemical sensitivities (preferably a Clinical Ecologist) is your best bet. I have been very ill with chemical sensitivities and have gotten better. I know many other people who were very very ill who have gotten better. This is not a permanent condition when treated properly.
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  #14  
Unread 05-26-2003, 10:18 PM
There Are Foods you can eat

Please visit this site www.ic-network.com They have an online handbook including what you can and can't eat to manage some kind of healthy life. There is really a lot of support on that forum from folks suffering IC and I think it is worth checking out.

Among the things you can't have are herbal tea and cranberry juice. Distilled water is fine and you should be drinking plenty of it along with and electrolyte supplement.

This site has message boards and support. You can survive this. Main thing is keep water in you to avoid dehydration. You will have a lot more health problems a lot sooner from avoiding water intake than you will have from not having enough food.
  #15  
Unread 05-26-2003, 11:33 PM
Slowly Starving To Death Because Of Bladder(ic) Have A Question About Red Clover?

Chris:

I posted this earlier in the week about Prelief. It is a product that you can buy that reduces the acidity in foods so that those with extremely acid-sensitive bladders (that would, I think, apply to you ) can tolerate common foods. We don't realize, until something like this occurs, just how acidic our normal diets are.

As far as foods go, I second Joselle's advice about a clinical ecologist. Sometimes our bodies become "hyper-vigilant", reacting to even the mildest of stimuli (such as scent) with the strongest of responses. They often use a combination of disciplines (acupuncture, diet, herbs and supplements) to help "de-sensitize" the body and lower this stimulation level. Someone who is versed in "integrative medicine" or an osteopath may also be more likely to understand alternative means to help you out with this. If I remember correctly, your area of Pennsylvania has a number of osteopaths (they're "D.O." and have done all the same residencies as an "M.D.").

In the meanwhile, you do need hydration! Distilled water has a Ph balance that you should be able to tolerate; also, look into a filter for your shower (my DD and I HAVE to have these where we live, or our skin is constantly in upheaval). I don't know what to tell you about emergency needs, other than it's quite dangerous to get that "dry" and that I hope, holiday weekend or not, that you've gone to an emergency room for re-hydration, if nothing else. Lack of potassium (as (((Kim))) points out) is quite dangerous, as is lack of magnesium.

I hope you find some answers and soon! It does sound like you need some healthcare options that are somewhat "out of the box"...and that you'll need to do much of the research yourself.

-- and I pray that you're getting the help that you so badly need as I type this...

Audrey
  #16  
Unread 05-27-2003, 05:23 AM
Slowly Starving To Death Because Of Bladder(ic) Have A Question About Red Clover?

Hi,

I am having a bladder diversion on Friday. My bladder may or maynot be removed depending on how bad it is when my uro gets in there. I will have an ilieal conduit. If you look up urostomy on the web there is more information. I do not have IC but notice that some of the urostomates do have it.

I am not suggesting that this is your only option but merely throwing it out there to talk to your urologist about. I am choosing this route because I am tired of messing with my bladder. It was not an easy decision.

Hope you get some relief.
Terry
  #17  
Unread 05-27-2003, 06:36 AM
Slowly Starving To Death Because Of Bladder(ic) Have A Question About Red Clover?

Oh Chris

I am sooooo sorry I did not see your post sooner!! You know I would have replied if I had seen it. I have not been on in a few days and when I did get on I did not see it!!

I am so sorry that you are still not doing well!!! I have been praying for you though. Maybe I need to pray a bit harder for you and Terry!!!

I wish I could be right there to take care of you and hold your hand through all fo this or go to the Dr with you and MAKE them do something for you!!!!! They would kick me out, but I would fight for you tooth and nail!! I hate to see you doing so badly and wish I could do something to help!! All I can offer is moral support, a huge and ALOT of prayers!!

Please make them get you on some IV fluids and get you rehydrated!! I bet you dont even cry tears.

Just remember that I ya and am thinking about you and praying everyday for you!! Please keep us updates on how you are, we DONT want to lose you!!!!!

  #18  
Unread 05-27-2003, 06:50 AM
HI ALL..AGAIN THANK YOU

I THINK AN OSTEOPATH AND ECOLOGIST IS A GOOD IDEA..I WILL LOOK INTO THAT.ALSO I DID ORDER A COOK BOOKFROM THE INTERNET FOR PEOPLE WHO HAVE IC AND ITS CALLED "A TASTE FOR THE GOOD LIFE".BUT MY LUCK..THERE ARE ONLY A COUPLE OF THINGS IN THERE THAT LOOK SAFE OTHER THEN THAT ALL THE FOODS IT MENTIONS I TRIED BEFORE I BOUGHT THE BOOK AND THEY ARE NOT FRIENDLY FOODS FOR ME.I EVEM AM TRYING A LOW OXALATE DIET..OXALATE ARE CRYSTALS IN URINE AND WHEN THEY ACCUMULATE THEY CAUSE BURNING AND TICHING DOWN BELOW(FEELS LIKE YEAST BUT ITS NOT. WELL ALL THE FOODS THAT ARE LOW IN OXALATE..I TRIED AND CANT EAT THOSE EITHER..AS YOU ALL CAN SEE I AM ON TOP OF THIS MONSTER.THIS IS TOO HEAVY OF A CROSS FOR ME TO CARRY. I AM WIPPED OT. I KNOW ALL THE INFORMATION YOU ALL GAVE IS GREAT AND I THANK ALL OF YOU SISTERS SO MUCH. I TRIED JUST ABOUT EVERYTHING AS YOU CAN SEE. HOW DOES ONE SURVIVE? I AM GOING TO GET A FILTER FOR MY SINK..I CREID MYSELF TO SLEEP LAST NIGHT. I FEEL LIKE I AM IN A DARK WHOLE AND GET GET OUT. I NEVER HAD THIS IN MY LIFE. NOE HAVE I EVER FELT SO HELPLESS. I HAVE ALWAYS BEEN A VERY STRONG WILLED AND MINDED PERSON.I SIT AND WATCH EVERYONE ELSE EAT AND IT KILLS ME. MY FAMILY CARES SO MUCH..BUT THEY CANT DO ANYTHING FOR ME. I DONT EXPECT THEM TOO. MY HUSBAND LAST NIGHT EATS THIS BIG ROAST BEEF SANDWICH(HE HAS BEEN UNDERSTANDING) AND HERE I AM LOOKING AT HIM AND SMELLING THAT SANDWICH!! AND HERE I AM STARVING.I HAVENT EATEN A MEAL IN A MONTH. I AM DOWN TO 110 PDS.I AM GOING NOW TO MAKE SOME CALLS TO SEE ABOUT AN OSTEOPATH AND LOOK TO SEE IF I CAN FIND A ECOLOGIST.. I JUST WANT TO LIVE TO ENJOY LIFE AGAIN. I AM JUST AFRAID THAT I AM LIKE THIS FOREVER AND I AM AFRAID I AM GOING TO DIE.. I LOVE U ALL AND YOU ALL HAVE BEEN WONDERFUL TO ME ..THANK YOU FOR ALL YOUR SUPPORT..ANGEL
  #19  
Unread 05-27-2003, 07:39 AM
Slowly Starving To Death Because Of Bladder(ic) Have A Question About Red Clover?

Angeleyes,

I can so much relate to your situation. I was so afraid when I was that ill. I couldn't eat or drink anything either. It's absolutely overwhelming to be in that situation. But I got better. It was through my own perserverance and hard work and the support of my family. As weak as you are, you still need to be your own advocate and find what works for you. One of the things I did when I was very ill was to make vegetable broth and chicken broth and drink them a little bit at a time. I went through a lot of doctors and many changes to my environment before I got better. It really was a hard road. My dh was so supportive and we worked at making our house a safe place. There was a time when we lived in a three story house that I could not tolerate a newspaper being in the house even if it was on a different floor from me. Now I can have newspaper in the bedroom!! (Well, only certain ones - there are still newspapers I can't have in the house.) What is happening to you is an accumulation of things and every toxic thing you can remove from your environment will help you get better. One of the Clinical Ecologists I saw always told his patients that if they could smell something it was affecting them. You can probably smell things other people can't. I still can't go into a lumber store. I can't stay in a hotel that is renovated. I can't live in a new house. I can't have carpet in my home. I can't have any particle board unless it's been sealed with four coats of a special sealer. I have to wash my clothes before I wear them and can't have anything done at a laundry because I don't tolerate their soap. I could go on but it does get overwhelming. If you want to hear more about what I've eliminated that is suggested in general for this situation, let me know. I'd be happy to tell you what I know. In the meantime, please know that there is an answer and you will find it. This may be something you live with forever, but it will not be this extreme. You will learn to control your environment, which includes food, and you *will* get better. I know you can do it.
  #20  
Unread 05-27-2003, 08:02 AM
Slowly Starving To Death Because Of Bladder(ic) Have A Question About Red Clover?

{{{Chris}}}
I see an Osteopathic doctor and she is the first doctor that has actually helped with some of my GI problems. An Osteo doc looks at the whole picture and usually knows of tests, etc that may help you figure what you can and cannot eat.

Also, do you have any natural food stores in your area? When I was initially diagnosed with all my food allergies I started shopping at Whole Foods. I actually found stuff that I could eat there! I still have to read the labels but alot of the foods are natural with no preservatives, etc. I believe most of their meats are also preservative free. The staff is usually very knowledgeable also and if you'll explain the problem they may be able to help you choose some foods.

I'm sending lots of s for you Chris. I hope you find some help and some relief soon. I know what it's like not to be able to eat something and watching someone else eating it can be very hard.
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